 
178

Lucy Blackman Lucy Blackman

Carrying Autism, Feeling Language:

Beyond Lucy's Story

by the author of

Lucy's Story:

Autism and other Adventures.

Edited and with contributions by

Mary Jane Blackman ("Jay")

Published by Book in Hand, Brisbane, Australia at Smashwords

Copyright 2013 Lucy Blackman

This book will be available in print in 2014

internationally through major on-line stores and

within Australia from http://www.bookinhand.com.au

Smashwords Edition, Licence Notes

This ebook is licensed for your personal enjoyment only. This ebook may not be re-sold or given away to other people. If you would like to share this book with another person, please purchase an additional copy for each recipient. If you're reading this book and did not purchase it, or it was not purchased for your use only, then please return to Smashwords.com and purchase your own copy. Thank you for respecting the hard work of this author.

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# Contents

Meet the Author

Preface. \- Hi! It's Lucy Here! d.o.b. 1972

Introduction

PART ONE - FINDING WORDS (Teens to 20)

1.1 - Touching On Triangles 1987

1.2 - Words and Deeds (Written 2012)

1.3 - A Patchwork of Phrases 1987

1.4 - Hands, Knees and Wriggly Brain (Written 2011)

1.5 - Chapter and Verse - An Achiever in Embryo 1987-1992

1.6 - Tentacles of Thought (Written 2011)

1.7 - Typing with Touch - The Role of the "Partner" (Written 2012)

1.8 - A Sense of Wonder - Knowing My Hand (Written 2012)

1.9 - Beamed Down From Syracuse - A Pen Picture of Me 1989

1.10 - Connecting with Queensland 1990

1.11 - Speech without Communication: The Old Me circa 1991, (Written 2002)

PART TWO - EXPLORING SENSATION (20 to 30)

2.1 - Touch-Free but Still a Partnership 1991

2.2 - San Diego to Seattle - Jay's Version Dec. 1991-Jan. 1992

2.3 - Sensation to Word - Responding into a Vacuum Jan. 1992

2.4 - Sidekick to a White Rat - What Jay Saw Jan-March 1992

2.5 - Sensory Changes 1992 (Written 2002)

2.6 - Explaining the Eureka moment 1992 (Written 2013)

2.7 - Speech and the New Me (1992 - 1999)

2.8 - Feeling Sound, Seeing the Dark 1992

2.9 - Partnering a Partner, Touch or Not (1992 - 1999)

2.10 - The Beam of My Eye (Written 2011)

2.11 - Exchanging Views, Sharing Information 1993

2.12 - So Much World, So Little Time 1994-1996

2.13 - Correspondence about Perception 1995-1997

PART THREE - MESSAGES AND CONVERSATIONS (30 to 40)

3.1 - Conversation as Theory 1999 to 2013

3.2 - Meeting with Me 2007

3.3 - Lucy's Song 2007

3.4 - Thinking, Typing, Behaviour, AAC* and Me 2008

3.5 - Just a Glimpse at What Makes "Typing" Work 2009

3.6 - Moving to Language 2010

3.7 - HEY, Are You Talking To ME? 2010

3.8 - As the Colors Swirl 2011

3.9 - Questions, Answers, Memory and All That Stuff (2013)

3.10 - Picturing Conversations 2013

3.11 \- Cards, Information and Anticipation (2013)

3.12 \- Echoes, Images and Practical Stuff 2013

PART FOUR - FROM LANGUAGE TO SPEECH (40 y.o.)

4.1 - Outside My Skin, Outside My Orbit (Written 2013)

4.2 - Speech Driving Action 2012 (Written 2013)

4.3 - Pots, Pans and Prompts 2012-2013

4.4 - Linking Things With Thought 2013

4.5 - Experiment STILL in Progress

Appendix 1 - Picture Gallery

Appendix 2 - School Scenarios- Enter the Heroes - Grania 1988

Appendix 3 - School Scenarios - The Determined and the Brave - Jaime 1988

Appendix 4 - School Scenarios - Mapping the Classroom with Pauline (Sue) 1989

Appendix 5 - School Scenarios - Concentrating on Communication - "Petra" 1990

Other Writings by Lucy Blackman

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# Meet the Author

1990 with Tony Attwood

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1998 Newspaper photo

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2005 Celebrating Graduation

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Lots more photos in _Appendix 1 - Picture Gallery_

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# Preface - Hi! It's Lucy here.

I was born in 1972. I have autism without speech, so I function as if I have an intellectual disability. I have an MA, have written a book and been quoted in other people's books.

When I was 14 I didn't have language – at least none that anyone had observed

Five years later I completed High School and went to University. How? Well, I didn't "recover" from autism. I didn't suddenly become so competent I could do this on my own – I certainly didn't learn to speak.

What I did learn, with the help of some wonderful people, was how to create interdependence, so difficult to achieve when one has autism. I learnt deliberately to attune my movement and vision to connect with written language I can see in my head.

With a patient partner I could type coherent language, and in turn these heroes could impose the kind of control I needed to be a companion.

Now I have travelled overseas and to dozens of places in Australia. I have met lots of people, and I try to explain that (as an adult) having autism isn't about "getting better" but about trying to make the rest of the world and autism accommodate and come to terms with each other. What an interesting concept!

If you don't know me, you can read all about me (at any rate up to the age of 20) in my autobiography. It's called _Lucy's Story: Autism and Other Adventures_ and describes my life up till just before I turned twenty. It isn't every teenager who creates her own case study, but I did. When I drafted the first version of _Lucy's Story_ in 1992 I was still learning about myself. And of course I went on learning over the seven years it took me to write the final version. And I still am learning.

I am only joking! You don't have to read all 180,000 words right now - you can do that later. Here are the basics.

I was born with autism. I couldn't speak except in odd words. If you had spoken to me, I wouldn't have been able to blend your words together properly either. I had learnt to read very young, but nobody knew that for years and years - not until I was a teenager. And then suddenly when I was nearly fifteen, someone helped me to use language in a completely different way.

I need to explain the title of this book, _Carrying Autism, Feeling Language_. When I refer to something _within_ myself, I often use the word "carrying" as an adjective just before the word for the emotion or whatever. So when I draft what I want to say, the word "carrying" frequently appears but I usually edit it out so it doesn't confuse or distract other people. I also use the way I feel about something in the same way. A little further down I talk about "nice-feeling, happy Just Jeans" when I try to describe skin sensitivity.

I have left "carrying" in place as an illustration in the paragraph in this chapter where I talk about my "carrying vibrations". Hopefully that passage will help you understand what I mean by feeling language! Anyway, I think of myself as being autistic in the way I am female - I don't have "femaleness". That is not an original thought but comes from the autistic Australian academic and writer, Wendy Lawson. Thank you Wendy!

In the first chapter of _Lucy's Story_ I describe how my family noticed that when I was a baby it was a fight to make me tolerate any kind of clasp or hug. But I loved my family (and of course still love them). But I seemed not to. This is because I hurt all over when I was cuddled. So I seemed to push them away.

The problem with words like "defensiveness" is that they encourage people to focus on the behaviour and not on the cause. No one can call pain a "behaviour", and responses to pain are not usually blamed on the patient. If the cultural response to pain varies, it does not alter the treatment of the condition that caused pain.

Some people with autism like lots of cuddles, much more so than typical children. I guess the deep down neurological reason is much the same as my discomfort. It's just that the mixed-up signals cross over differently.

Right up to my twenties, all I realised about hugs was that they successfully penetrated my pain barrier. The skin that was touched felt as if it were being peeled from the underlying flesh. Skin which was protected by shirt or nice-feeling, happy Just Jeans had a horribly similar burny feeling, but more like a scald.

So really when I was a toddler the notion that a hug or cuddle was for affection would never have made sense to the small person whose body was arranged over my skeleton and powered by my brain. This same brain both produced and then received fearsome messages from the person cuddling me and whom I should have cuddled in turn. I wonder what would have happened if my body had given people feedback that I found the comfort in cuddles that I didn't.

Because I couldn't snuggle in to my mother (AKA "Jay"), it may have been a natural conclusion on her part that my odd eye contact was only part of how I was acting. But this would have been an oversimplification. Of course the two behaviours are most probably linked. However for a moment imagine the small person that I was had cuddled and babbled interactively but not made typical eye contact. It is likely that someone would have investigated my visual processing, even though that kind of approach may not have been easy in the seventies. It would not have been so difficult today.

I also wrote in _Lucy's Story_ that when my four big sisters looked at me, all they saw was a non-communicating and distant child. If I were talking directly to them right now, I would say, "In the photos I look like a changeling among you lot, but in fact I experienced a feeling of expectation and warmth in my heart. I was happy to be included, though I think probably I jumped up and ran away as soon as I could. The lack of expression on my face is because my facial muscles don't work quite like the rest of you, and my eyes don't signal my brain quite the same way. Dreadful to think that in the picture it looks as if I am not happy when I really think I was."

People often mention how kids with autism respond to the rustle of sweet papers, and parents see this as an interest in food. But for me this rustle was more audible than the human voice. Although of course I came running when I heard that sound because I loved "lollies" - not that we got them that often - I was able to respond that way because I heard the rustle clearly.

Now, when that paper-rustling noise was close it sounded very loud. Later in my teens when I carried plastic shopping bags, that experience was also very noisy because I could hear the friction of the bits and pieces in them, as well as the sweeping of the outside of the bags against my jeans.

In a later chapter of this book you are going to read a passage which I wrote to show some very important differences in how I use language, but what I say there is also important in many other ways so I am putting it in twice. "My body and its 'orbit' includes my thoughts, my real emotions, and what I call my 'feelings'. These are not the same as what you people, i.e. neurotypicals, call 'feelings' but are my carrying (i.e. internal) vibrations, flashes, visual-blocks, touch-horrors, smell-tickles and the cross-over that comes from them. As memory does impact on these, that is a 'feeling-trigger'. However the world outside my skin, and through which I move, is not part of my orbit, and my memory of that world is an intellectual process which is independent of my language memory."

So from my perspective, I would describe as the "feelings" (i.e. sensory processing) of others as weird to me. On a very few occasions in my life I have been aware of a sensation where there is an instant of visual clarity or sound-deadness with clear brain-processing in the middle of autistic buzzing and haze. I guess this is what things are like for the rest of you (most of the time).

According to "experts", one of the features of autistic spectrum disorders is a problem understanding what others feel when they are involved with people and situations. From your perspective what I experience looks like that, but actually one can explain it in terms that make it an information-processing and sensory issue.

You see, the information processing is related to the problem of multi-tasking. Really, interaction between most humans is composed of drawing on previous experience, matching that experience with what is happening now, and then factoring in the additional differences. So whether you are a grown-up or a little person you are making an informed guess about what is happening. But - all this is meant to be a matter of simultaneous processing, and we with autism are known not to multi-task!

Any reasonably observant person would describe my interaction as "unusual", but to attribute it to an obscure condition called "She Doesn't Want To" would be more than inaccurate. However it upsets me how often people say that!

Even before we start interacting, we are handicapped. Our eyes and brain don't always process colour and depth very well, and these are the basis of "reading" faces. And then we have problems with sequencing movement, and this is how most people interpret body language and expression.

When I was small, I don't think I realised that other people's eyes were the same thing as the bone and flesh out of which I looked. Their eyes were simply vari-coloured blobs that moved in changing surrounds of skin. I think by the time I was school age, I had taken in the idea that we had the same structure, but still in my mind it didn't translate into our having a shared ability to see and enjoy the same thing. So if I showed something to myself it was so I could see it, not for someone else to look at it.

This is puzzling because I had no notion that another person didn't know the same things I knew, or exactly what I had done. Only later when I had grown up did I realise that most people work out the motives and thoughts of other's from their body language, from facial cues, from environmental pressures, and (as importantly) from good guesswork based on prior experience. My inability to do this myself as an adult may in part be because I didn't have this experience it as a child.

I think this is what Professor Simon Baron-Cohen really means by "mind-reading". (http://www.autismresearchcentre.com) Perhaps my own inability to realise the need for this kind of skill is in itself part of the deficit he describes, though really the term "mind-reading" is highly inaccurate, not to say unscientific.

So already the baby who later will be diagnosed with autism is behind the eight-ball. Touch and smell is confusing for us so reinforcement through affection is not going to happen, and then speech, which is the basis of human communication, will be corrupted to some extent. I talk about this a little bit later.

Some people with autism do develop good, fluent speech, though they have an unusual way of using it in interaction. I guess they have the same kind of package I am describing here, but maybe in a lesser way, or only at a certain point of their development.

To live in a family with autism involves a lot of disruption. There can also be a lot of laughter. Of course we are not monsters, though a number of us live in a state of confusion which is generated by atypical processing of time, space, balance, light, colour, sound and the whole sequence of those in the memory process. So that will mean that some children, men and women with what is known as autism may lash out at those surrounding them.

Where another child would look at you, grin and giggle when you call and the kid runs away, I didn't do that unless I was really hyped up. This was because I found no purpose in expression. So it looked as if I were escaping rather than creating a game.

Another problem was that, even when I was older, I didn't ever work out the difference between the right time to play and when it was important to be obedient. I simply didn't work out the cues.

Eventually as an adult I came to understand that other people could stand still because the world around _them_ was triangulated. That is they could work out distance from something from their own depth perception. They could then feel their feet (or their bottom if they were sitting down) as another point in this metaphorical triangle.

Then above and beyond them was their skin which was balanced against the pressure in the system behind the ears which is known as "the vestibular system". And this whole kit and caboodle was tied together by an integrated sensory and temporal awareness. I can only say, what an extraordinary platform for certainty these people have.

In my short story Dragons of Bass Strait (in my book Talking of Macbeth) which has a character based on me, "Lisa" describes this. I have incorporated this passage into this book because it explains a lot of my problems with autism. (It comes near the end of Appendix 4 - Mapping the Classroom with Pauline (Sue) 1989 where you can see me in a fictional Year 10 class.)

In my case how I move is also a problem, though it looks as if I walk normally. I know that my gait is a result of going on the long hikes which I talk about in _Lucy's Story_. So I guess that practice is a factor here.

Possibly it was my ears, but I heard sounds differently from how other children do. As an adult I found out from an electronic test that one ear heard sounds a lot slower than the other. That is called "latency". The other discovery I made then was that I had gaps in what I heard, so in a funny way other people speaking didn't have a normal human flow, but was more like a Bugs Bunny cartoon. I could not hear most speech directed at me in the kind of way most children do. How one hears naturally translates into how one speaks.

Speech grows in one for a number of reasons. For some reason, during the development of humans as a species we have all acquired a speech centre in the brain. The way each of us uses that may be different, and that is partly environmental and partly social.

The environmental factor is how we hear speech. In most children this appears not to be a problem, and if they are exposed to talking adults and babbling kids, they are tuned up to do the same. However reality is what you experience. People like me who have fluctuating or abnormal hearing, and who don't perceive faces in the same way as most human beings, will probably develop odd or unreliable speech.

I therefore think it is most likely that people on the autism spectrum who are more competent than I am, at the very least at some time in early childhood had unusual or chaotic hearing and perception. Maybe this was at the window in time when interaction makes pathways in the brain.

Language is part of the human condition, but what we humans did with it once our brain grew that ability and our mouths and throats adapted to create sounds that synchronized with the output of the language in our brain is part of the social factor. Social interaction is better understood than what speech is, which is totally fascinating.

I believe that another reason I had problems as a small child in making the connection between people and myself, and even understanding that I was also a person, was visual. Even as an older child I saw in segments. In that mode there are differences from how typical people process cause and effect, how they understand sequences of movement and even see the subtle movement of faces at rest.

I now realise that ordinary people process faces and expressions and body movement alongside and simultaneously with the immediate cause of these reactions. That is they understand the response-thought of the other person through a subtle interplay.

However for me it was different from how it is for most of you. I believe that my differences with social interaction were bound up tightly with the sensory chaos in which I lived as a small child. So one can make a case for my extreme social naivety being in part a direct consequence of this.

When an ordinary child observes an expression, sometimes you see their face mirroring it. But this urge didn't come to me until I was an adult. Even now usually it doesn't happen. That means for me interaction is irregular and not inbuilt. Also the way that I hear is different enough to ensure that, even if I try to imitate, I can't actually model how someone else uses speech in interaction.

Anyway it seems to me that the way we human beings are nurtured has direct input into interpersonal timing as well as affection. Well, that is fine for most of you, but what if one's skin and vestibular system, etc., doesn't meld with the person cuddling or stroking one? Then obviously the whole tangle of nerve ends and the cocktail of internal chemicals are not going to follow the same paths and patterns as in other children.

Conversations are social, and the purpose of conversation is to create a framework. So introductions ("Hello", "Goodbye", etc.) are not as important as interaction, though of course they are part of the ritual.

A great part of any conversation is spacing and the subtle shifts that create an engagement. That is, the actual content of conversations is very slim compared with the number of words used. If the content is more than this, the amount of concentration required by the listeners may make social interruption more of a nuisance than a help. (For example if someone is giving instructions, at that point it really isn't a conversation.)

These observations relate to conversations between people who socialise typically. Now when I watch adults with Asperger's and high-functioning autism going through these motions, I realise it is very hard work for them. This may be why some people with autism think purely social interactions are irrelevant. In my case I particularly would link this irrelevance to childhood sensory experience, in the same way that resistance to affection in my case comes from sensory defensiveness.

Obviously what you have just read only covers a tiny fraction of the experiences and family dramas of the first eighty pages of _Lucy's Story_. Also some of this stuff I have learnt since I wrote that book. Of course a lot of my childhood was happy, but by the time I was fourteen, I was on anti-depressants and also knew that my family was hoping to find a residential placement for me. Chapter Five of _Lucy's Story_ ends with the words,

"At this time I was continually grappling with another and more subtle anxiety. I believed that I understood language and the world around me, but I lived in terror that this was a delusion and that I truly was a chaotic mute. The truth was not far away. My terror was suddenly to be scattered like so many dragon's teeth, to sprout and multiply into wonders and difficulties of which I had not dreamed."

So what changed? To find out, go to _Part 1 - Finding Words_!

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# Introduction

_Mary Jane Blackman ("Jay")_

This is not the "story" of a "cure". It is a collection of personal observations by and about one adult with a diagnosis of autism, and extends over twenty five years. It about the experience of living with autism. It is also a book about language from the point of view of someone who uses hardly any speech and only rudimentary social skills.

The sections of this book are arranged in four "Parts".

_-_ Part One _covers roughly the same time frame as the second part Lucy's first book,_ Lucy's Story: Autism and Other Adventures _, and starts a few months before Lucy turns fifteen. It includes a few abridged extracts from the earlier account. These are intended to give context to later writing which explains how Lucy was, and is, able to write this kind of material._

\- Part Two _documents Lucy's growing understanding during her twenties of the impact of sensory issues typical of autism on her language use and on her other difficulties. It also includes transcripts of meetings with other people at which these were discussed._

\- Part Three _includes material relating to Lucy's social and other differences, and, like the rest of the book, is relevant to "message passing" difficulties in relation to non-speech communication. Many of these differences are typical of autism, and relate to topics well beyond pragmatic communication._

\- Part Four _is still a work in progress, an examination of the differences between Lucy's complex internal language and her rudimentary spoken expression and how these affect how she functions in all aspects of her life._

_Even if she had spoken fluently, Lucy would have probably have interacted in a way that the rest of us might find rather disconcerting. As she says in the last section of this book, "The average Muggle is pretty confused when faced with a flying Vauxhall - no matter what the colour"! (_ 4.5 - Experiment STILL in Progress). _So in one way this is really a book about autism and its effects, illustrated by some very specific difficulties. Lucy's own approach to using language accommodates some of these problems._

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Lucy's Story _(1999, 2001) told the story of how Lucy grew up as a child and teenager without speech. She then was offered a way to use language. She completed High School. By chance she came to understand some of the reasons behind her problems._

_In 1999 Tony Attwood wrote a "Foreword" and "Afterword" to Lucy's autobiography,_ Lucy's Story: Autism and Other Adventures _. In the "Foreword" he said that Lucy had taught him "_ _more about autism than any academic text_ _". Tony (_http://www.tonyattwood.com _) is internationally recognised as an expert speaker, writer and clinician in the field of Autistic Spectrum Disorders, and has known Lucy since she was seventeen years old. (See_ 1.10 - Connecting with Queensland _)._

_In 1992 when Lucy wrote the original draft of what became_ Lucy's Story _, it was to be only one "chapter" in someone else's book and was never published. "The Chapter" talked about what Lucy believed to be the impact of sensory differences associated with her autism on her movement and language development. It also described why she had identified some of these as a result her receiving auditory therapy at the age of nineteen. She then went on to complete a BA (Hons) in Literary Studies. At the same time she wrote about how she was affected by her autism. This writing expanded "The Chapter" into a full-length autobiography._

_In his Afterword to_ Lucy's Story _, Tony Attwood discusses in some detail how Lucy's descriptions explain the reasons behind her behaviours and difficulties, and how these were "_ _consistent with our theoretical models and the research literature"._ _He went on to say,_ _"This autobiography describes Lucy's development up to 1992. Since 1995 she has typed freehand but still requires someone to help her control her autistic behaviour and to provide verbal feedback, i.e. to read aloud her completed text. The question of who is typing is no longer an issue. However it is inevitable that this book will be considered in the debate and argument regarding the validity of Facilitated Communication"._ _(_ Lucy's Story _p. 284-5)_

Over the years from 1992 to 1999 while she worked this detailed narrative Lucy found she had to address two topics closely associated with Facilitated Communication. One was why for some years she needed some kind of physical contact while she was using a keyboard. It was only by achieving "independent" typing that she eventually was able to analyse and explain this interdependence to her own satisfaction.

_The other issue she addressed was why she had problems with pragmatic expression and functional communication. Related to this were the differences between her atypical and very rudimentary speech on the one hand, and her complex and sophisticated typed language when dealing with theoretical concepts on the other._ Carrying Autism, Feeling Language _continues these themes._

_Lucy is now forty one years old and graduated MA in 2005._ Carrying Autism, Feeling Language _is a collection of writing which overlaps with her first book and transports us through her twenties and thirties to share her experience of autism as she moves towards middle age. It also includes descriptions by other people of how Lucy appeared to them and includes a collection of photographs relating to the text. (See_ Meet the Author _and_ Appendix 1 - Picture Gallery _)_

_As Lucy says, you do not need to read_ Lucy's Story _before starting on this book. However if you have already done so, this collection may answer some of the mysteries she first tried to unravel twenty years ago._

Once again Lucy is trying to answer the same questions which have fascinated her all her life. She does so by talking about what it is like to have autism and to have "behaviours" which make it seem she doesn't understand the world around her. This is because she inhabits the world in a way that most of us never experience.

Carrying Autism, Feeling Languag _e is probably interesting for anyone involved in ASD, not only those living and working with people with little or no speech. It is also a resource for the wider world of people involved in augmentative and alternative communication (AAC), no matter what their background may be._

_As Tony Attwood says, Lucy has benefitted from "_ _conventional and unconventional programmes designed for people with autism_ _" (_ Lucy's Story _p. vii). In this book the characteristics of autism are discussed mainly in relation to achieving physical "independence" and some kind of functional language in "typing" (i.e. accessing a keyboard in the company of a partner, but without physical contact from that other person). However that is only one facet of Lucy's life. Most people involved in ASD will realise that her "peculiarities" described here affect all aspects of living with autism. For example there is relatively few references to the crippling and pervasive anxiety which is part of life for many people with autism, including Lucy. Accommodating this anxietyand its effect on her behaviours is one of the many benefits of the type of physical contact and other activities that Lucy describes in this book._

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# PART ONE - FINDING WORDS (Teens to 20)

Sorrento Back Beach, Victoria, Australia. March 1987

_Carrying Canon Communicator_ ®

borrowed from Rosemary Crossley

(See 1.3 - A Patchwork of Phrases)

# 1.1 - Touching On Triangles 1987

**Adapted from Chapters 6 and 7 of** _Lucy's Story_

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I was fourteen years, four months and nineteen days old. The hot early-February summer sun saturated the main arterial road outside the converted old single-storey shop.

From what would have once been the living quarters behind the shop plunged a stocky plump person who took one look at us and swept us through the door from which she had emerged.

"Hi, you must be Lucy. Good afternoon Mrs. Blackman. Sorry to keep you waiting. I'm Rosie Crossley ..."

Tests usually depend for their outcome on the child carrying out the nominated activity or speaking the word which represents the answer that most people would give, or on the onlooker observing the child pointing to or picking up the symbol or object required.

This woman had developed another approach. She watched my hand very closely to see if I were initiating the correct movement, or she touched my hand or wrist to feel from the action of my finger whether I was attempting to touch the correct symbol. She then prevented my losing the sometimes fleeting impulse to reach in that direction.

Symbols were spread out in front of me. To my right a voice called out names, and under her touch I pointed with what felt to me like practised ease. But at some later point in this sequence I knew that I was achieving a slightly different goal from previously and that this was completely different from having my hand moved to train me to touch some sign. Here the action was initiated by me, much as I had once taken my sisters' wrists in my own toddler hands and placed their hands on the snack I could not unwrap.

For example, early in the session I was asked to indicate which was the symbol for the word "triangle". Paradoxically this was a shape whose name I could speak, whose shape I could indicate by the outline of my steepled forefingers and thumbs, and which I could even draw. So in most teaching situations, if I used any of these when I was shown a diagram of a three-sided figure, the person with whom I was working would think my answer meant, "That is a triangle".

That was not quite true, as I was making an answer that I had incorporated into my repertoire of automatic responses. Even if I had originally been taught to produce this response to approximate the expression, "That is a triangle", it had entered my non-language activities, and was something I simply understood as the thing to do if I were shown a triangle.

However I did understand a lot about triangles. On this occasion it was the language stream which was self-taught through reading that I was processing, and it was in this convention that I was reaching for that symbol, to show that I understood what I heard, not as a knee-jerk reaction to completing some exercise. It was a communication rather than performing a skill.

The adult hand on my immature adolescent wrist steadied it, and stopped when I stopped, following as smoothly as an oiled pulley when I tentatively tried to reach forward. So I was not frightened by my own lack of control. More importantly, I was aware that my message was processed instantaneously. It was five years later that I suddenly even suspected that this was part of normal spoken language and gesture, and that if one says something it is not communication unless one also has an innate understanding that the person on the receiving end is (and also should be) coded into the same convention. I did not have any idea of this, just as I lacked the automatic responses that should flash around the body, bringing one's breath and gesture and eye direction together into that uniquely human characteristic — speech.

The sense of reciprocity my new partner managed to impart was captured while the communicative movement which I was making was still flowing. After all, in normal conversation you do not wait for the other person to complete the word, then analyse it, and give your permission to go on with the next. So the answer to the question, "Which is the triangle?" was mine, and my own signals were uncorrupted by uncertainty because her response was so natural and instantaneous that in turn it cut off the urge to change my wavering hand-direction into a stabbing movement towards shapes at random or to perseverate on any symbol occupying a certain position in each layout.

For the way this large, kind, noisy person touched my shrinking hand and anticipated in her own where my finger wanted to go, as if she could feel the muscles and tendons start to contract, was itself a code breaker. Physical touch and affection had always made me freeze slightly, but this whirlwind made me respond in the same way that a ride in a dodgem car leaves one so relaxed and stressed at the same time, or in the way that the deep water of the swimming pool had released me from the thrall of gravity as a small child, so that I had been able to make eye contact with my sisters, and had been happy to be caressed. The same lack of stress was present now when my arm was held, not to restrain me, but to give me control of my own hand in a partnership of body and will that most people take for granted.

On some cards were words at which I pointed. Some of these I had even learned to mouth in reading instruction when I was younger, but here I did not have to struggle with the incomprehensible mystery of why people wanted me to make noises in response to clear written words.

Then there was a pause. Early in the session I had been shown how to work a toy, a structure on which plastic penguins could move up and down in an endless clattering queue. Rosie had now moved to shelves surrounding us, and, with her back turned to me, was sorting out bits and pieces of equipment. The opportunity was not to be missed, so, like an iron filing to a magnet, I arrived at the opposite shelf so that I could again lay hands on this piece of enchantment. My new teacher sat down again, glared, growled me back to the table and propped up in front of me a Canon Communicator, a very small simple typing machine that worked by printing on heat sensitive tape.

My partner placed her hand on mine again. This time I was not taken through as many steps. I pressed single keys through the little holes, and suddenly my finger felt again as if it were a willing agent of my mind. In stabilising my hand Rosie had given me another gift. My hand and my mind were connected. The eyes are in some ways a periscope between the mind and the outside world. As with a periscope, their effectiveness depends on compensating for wave movement and also the judder of on-ship activity. However my body, my mind and my senses had never interacted in quite the same way as my sisters' so I had some difficulty in knowing exactly what I could expect of all my bits and pieces, especially if I were trying to focus on, and also use, my hand in conjunction with abstract thought. The steady touch on my own hand and forearm somehow made me bring it into focus, and at the same time feeling the point of contact gave me an accurate measurement as to the distance between my fingertip and my sensation of that touch.

The wavering end of my forefinger moved, prodding at the keys. My own first name, which I could already write accurately, came slowly through the slot as the tape jerked letter by letter as I pressed each. In my ear a voice asked me to tell her my surname. The voice was not confusing because she did not want a spoken response.

I typed the eight letters of my surname, a sequence I usually had to copy. I worked through some questions fumblingly, with no spaces and many wrong letters but in words that were mine. Then in response to what I think Rosie would describe as 'hassling', my first real sentence. The words arrived at my finger slowly - "IWANTSMOOTHLIFE" - a form which surprised me as much as my mother, tousled and flushed, facing us across the table with an air of combined excitement and scepticism.

The edge of Rosie's face filled the corner of my eye. She now was insisting that I answer a personal question which I really cannot remember. Whatever it was, it resulted in the second sentence of my life. I, who could not speak my own thoughts, use pronouns or make comments except with concrete naming words, blurted out, letter by letter, an observation that I now see is as accurate as it is typical of autism: "IRUNTIMEMYWAYNOT YOURS!"

**********

Later Jay and I took home a borrowed Canon, a battery and a supply of thin white tape: a passport to language and to more problems than I ever dreamed.

**********

# 1.2 - Words and Deeds (Written 2012)

The word is a human thought in sound

(ourselves excepted)

But thought gets lost in wordy clutter

Not political thought only

But that's a good illustration, isn't it?

See what I mean by 'wordy clutter'

Let the Tea Party cups rattle

Against the flying saucers

WHOOPEE – a word on the wing !

**********

_Lucy's Story_ was written between 1992 and 1998, and was published in 1999. I do know a lot more now about the process of non-speaking people producing typed language with a partner in the same way that I do ("facilitated communication"), and, guess what? This highly controversial process has produced a dialogue which puts sixteenth century theologians to shame – but both sides are right!

So my aim is to suggest that the differing views don't mean that this isn't a powerful and transforming strategy. It just means that we all need to exercise common sense.

As speech is the defining human characteristic, it follows that intentional non-speech communication is both referenced to it and judged in its light even if the gestures are independent of it. So think about these examples which are understandable across cultures,

\- pointing

\- coordinated smiling or eye direction

\- conscious movement like dancing

These all employ some of the same innate mechanisms which include

\- conscious intent

\- shared attention

\- physical awareness of your own body

These are often lacking to some extent in the kind of people who find some access to language through what we call "FC". - that is, people like me!

Other non-speech communication strategies _are_ linked with speech (i.e. to a language common to both parties) and include

\- the use of language-based sign

\- writing (and its later development, typing and print)

\- deliberate acting (as in Charades, Theatre, etc.) which is dependent on mutual understanding of language, memory and shared culture, even if there is no dialogue.

These activities develop from speech. For most people "non-speech communication" is a combination of both kinds of non-speech strategies I describe and of other methods of expressing ourselves without using our mouths.

Words are not necessarily speech, though they derive from it. For example at some stage our ancestors decided that they could draw a representation of an animal and that it would fit with the word for the beast. The way that the painted animal was posed gave anyone who saw the picture another word to speak, "running", "walking", etc. and this linked to the same action in a person or other entity (for example, "running water"). Sorry to state the obvious, but this brings us all to the point at which I started to think this out.

Of course it took the invention of ideographic writing, and then the reverse process, a fairly phonetic script, to give people who use it the same flexibility as in speech. This is where it becomes possible for someone to either acquire language even if hearing is distorted, or at least to use it internally (if one can read, that is).

So although typed language can't be an exact substitute for speech because it is acquired through different channels, it can make a kind of bridging process for intelligence.

Using language is part of being human because it is part of overall brain connectivity. Language is needed to drive the engine of intellect and even bodily well-being. This is so whether or not we are socially interactive. Language and communication are not the same thing.

What I would say is that communication is usually taken to mean passing on

\- information

\- messages

\- attitudes

\- other emotional or practical data

For most people spontaneous body language and speech (whether conversation or just talking) perform this role, so long as all are in the same cultural group and taking into account age, ability and other factors.

If for one reason or another no-one

\- observes these activities

\- is able to read what is written

\- can understand the references made by either a spontaneous gesture or an acted scenario

then these are not communication. They are simply activities in which the individual indulges though they may have "meaning".

This is also how it is for people who don't have speech or controllable body movement. So people who can't make intelligible sounds, and who also can't interpret other people's actions and who at the same time can't deliberately move their bodies in the same way as others, are effectively non-communicative.

With people with uncontrolled body movements, care-givers become skilled at interpreting some responses. In my case, and with some other people with autism, their knowing the trigger for chaotic echolalia can perform the same function. This applies to the weird situation where short chants are linked to my memories of many decades ago, but relate to a contemporary event happening in front of my eyes.

When possible, therapists and parents attempt to make some kind of progress with different strategies to help people communicate coherently at some level. Such interventions may involve both physical support and pro-active encouragement. They will also try to give observers some idea of what the non-speaking person is "saying".

The strategy called "facilitated communication" is one such approach.

There have been parents and teachers of people with severe cerebral palsy and other physical conditions who have found that by cradling the young person in their arms, or by giving access to a keyboard, or an opportunity to touch an alphabet board, the kid was able to make deliberate movements which showed the person with whom they are in physical contact that they

\- understood the concept of written language and

\- had learned to read.

Sometimes an observant onlooker can also see

\- that the body movement originates with the disabled person, not the other person and

\- that the supporter is just following through and ensuring success.

Long before the term "facilitated communication" was used for this kind of activity, the Irish author Christopher Nolan had written his best selling _Under the Eye of the Clock_ with his mother supporting him while he used a head-pointer. _(Editor's note: Apart from this autobiographical account, you can find a description of Christopher's early education and exposure to print on Wikipedia)._

At times there have been reports of people with autism who either wrote or typed language much more coherent than their disordered vocalisations. A Canadian, David Eastman in the early eighties accessed a keyboard with shoulder support, wrote poetry and took college courses. His poetry under the title _Forever Friends_ is published with his biography _Silent Words_ written by his mother after his death in 1988. In the eighties before I typed myself, I heard people talking of a man in Melbourne who claimed that a seven-year-old with Down syndrome could use a computer keyboard when sitting on the man's lap.

I have been told that the term "facilitation" is drawn from practical therapy with people with cerebral palsy, and relates support and assistance in activating muscles and nerves through touch, coactivity and prompt. Even for someone like me who seems not to have problems moving, touch may unlock purposeful movement.

One particular problem for me is that I was sometimes taught practical skills and handwriting hand-over-hand, but unless the job or message was food-related I didn't see the point of the activity once physical connection was removed.

However, later the use of "facilitation" in the wider sense was to bring my mind and body together in much better understanding. "Facilitating" someone in the sense I mean allows the "typer" to take the lead and helps to inhibit involuntary movement. As the thought is new with each sentence, there is no opportunity for hand-hand teaching as this presupposes a set repertoire of skills that I will learn to sequence exactly. Though, of course, I have learnt some automatic movement control over the years.

I would say that movement is a means to communication, in itself it is not communication. "Sharing" information implies a connection which is sometimes not there in autism. In autism we spend a lot of time decoding other people's conversation and then giving off a parallel response, or we may have a physical reaction which may lead to something we need. Now this may not be exactly the same with all "FC users".

Speech is a common human characteristic, and to suggest that all, or even most, speech is practical is ludicrous. Just walk through any crowded public space and listen! That is why using "facilitated typing" can enrich lives, but it certainly does not exclude simpler communication, e.g. typical gestures like arm pointing, sign with some speech and so on. It is the intelligence of the assistant who creates the opportunities for interaction.

"Typing" for me is really an adaptation of the written word which relates directly to speech, but does not weave back and forward between concept, interpretation, picture, sign and internalized word thought as speech does (or at least as most speaking people do).

Actually motor movement in speech is involved with a lot of complex intellectual processing. Most people are unaware of these even as they happen. Of course some, like putting one's tongue up to make the final bit of an "ell" are fairly easy to identify (even if one can't do it. I can't produce "ell" in the middle or at the end of the word, even if someone models it). Then there is the "mmmm" movement, but how does "lam" (as in "run away") or lamb, or even "Lambeth Palace" (the residence of the English Archbishop of Canterbury) come into that equation? There is no way that a "typical" speaking person can just recall exactly what every part of her mouth did to form those sounds.

What fun to work all this out! Of course this is only an approximation and I may be a bit rash, but I think it is the clearest way to describe it.

When you read the last chapters of this book it may be clearer to you why I find this is a good way to look at how I communicate.

**********

# 1.3 - A Patchwork of Phrases 1987

**Adapted from Chapters 7 and 8 of** _Lucy's Story_

**********

Jay looked warily at me. My hand was in hers. "What shall we talk about?" she chirped. Irritated I began to wriggle and her hand tightened to stop me pulling free. Suddenly I had that same sensation of mind and hand being compatible as the pressure on my hand gave it coherence in my lost personal view.

There was a pause while I indulged in a mini-tantrum. Then, as often happened after I had pressed my open jaws hard against my hand, my perception briefly passed over the divide into coherent understanding. The language in my mind rearranged itself, and I had something that had to be said:

"I#BITEMYHANDBECAUSEIAMCROSS"

My finger moved on the keyboard and the tape printed the letters that I hit, with only one blob left by the erase button. Of course for my mother, who saw my finger linger on and depress the key, the symbol was instantly apparent, and I was aware each time meaning was starting to be formed from each group of letters.

Over the years she came to connect some episodes of sudden distress while typing with my not being able to answer a question. I had a means of expression and (yet I still could not) give the answer to a question.

What I did not realise then was that when I tried to plan its movement, I was unaware of the exact position of my fingertip in time and space, much as I was uncomfortable walking on slopes because my foot and my sight were sufficiently out of sync to make me uncertain as to the exact moment my sole could start to bear my weight. I was not learning to type. I was learning to help other people to enable me to stumble around the keyboard so that I could use my underdeveloped internal language in the way I thought speech and writing were used by everyone else.

Jay often churned out chatty little missives in my Special School Communication Book. (She wrote), "Not to do with day-to-day routine ... Deal Communication Centre ... appointments late in the holidays and last Monday ... my scepticism ... expressing herself relatively fluently ... not a smooth session ... Keyboard ... Just doesn't use spoken language this way ... By the way, what did they make in Home Crafts on Monday this week?"

The answer was a crashing disappointment: "Pancakes and fruit salad."

Jay stopped in her tracks and redeployed her enthusiasm: "When we asked her on Monday, 'What did you make in Home Crafts today?', Lucy keyed in 'Just sandwiches.' Obviously not the right answer, but I have never heard her respond like that or use that kind of phrase, and 'sandwiches' was spelled right." It is not surprising that I could not make my answers fit the facts. My fourteen years without useful interactive conversation had meant that I had grown up with overlapping craters in what I did with statements, questions, suggestions, speculations and negatives.

Home Crafts was fun. However I often did not like the food. I had fixated on my own plastic-wrapped sandwiches. I made these myself every day, and always carried them to school, even on cooking days. This avoided the terror I felt when something was missing. So when Rosie and Jay had posed this question, my answer was fine, but it did not occupy the same area in my processing as what had really occurred in my day. After all, I had never acquired a language key to remembering how things had been, except in the most chaotic and unformed sense.

I had not learned that questions were asked so that someone else could reconstruct a real-life scenario from words that I formed. Conversation among other people, stories read aloud while I was shown the pictures, television serials and movies often overlapped in the same imaginary world, and when I had started to construct stories in my own head during our long walks, it was simply opening another door into that world. I had little discrimination as to what was my invention, what was the fiction of others, what was my understanding of the real world as I knew it, and what was the factual information so valued by my new communication partners.

My own mental processing of words and their relation to meaning was sadly awry. When I fumbled for the lettered keys after someone asked a question, I foregrounded what I immediately thought of, and it landed in whatever spot it was inside my skull that my typing urge was starting to develop. That snagged image promptly became my answer. I confused the word which I saw in my mind's eye and what I wanted to express.

Intentional pushing on my hand only served to confuse me, because I could not understand that other people thought that I would learn to communicate by being shown what to do. This had not worked in practical things, and speech had not developed when others modelled words, which is why conventional speech therapy had created communication problems of its own. This skill was no different. Special education myths seem to have a high casualty rate when confronted with autism.

I think that (my teacher) believed that she was teaching me, so she did not allow herself to be used as a crutch and a reflection of my movement. She was so much a teacher that I was never in control. She asked Jay, "Do you direct her hand, or let her go? I have supported her wrist or forearm, but little direction."

Jay replied, "I asked Lucy about where she liked her arm held, and in effect she 'said' with the supporting hand flat under her forearm or elbow. ( _Picture Gallery_ 1987). When she really has steam up, or when I want to be sure I am not 'leading', I put my hand under her elbow, rather like helping a frail person who needs balancing. However she cannot go on for long like this. In the beginning I held her wrist firmly, so it might pay to try this. Don't let her continue with 'rubbish' if possible."

(Typing with Jay) once I started to see my own sentences as they rose out of the depths of the typewriter, I typed visualising myself as another person talking to the Lucy who I had been for so many years. I had often felt as if there were a second person within my own head when I had imagined using speech. Typing fell naturally into the same pattern. When Jay saw this conventional written language appear, she thought I was using it as other teenagers do. She did not realise that I typed more fluently if I imagined I was sitting above my own body, watching as another Lucy would, a new character, also called Lucy, going through the motions that all other literate people did. It was as if I were role playing.

(My teacher met with Rosie) to see me working there, and to find out more about the process of dragging language out of my jabbing finger. Jay continued to pour out typed exhortations. (My poor teacher) replied conscientiously, but after a while we seemed to have reached an impasse. At home I was using more and more language on the keyboard, or even on home-made letter boards, but was only copying set work at school. When the teacher held my hand, she expected me to crave to communicate as if I were an ordinary person who had been prevented from talking. However I really had no speech structure and conversational impulse. My language was a patchwork of phrases which I sampled, much as a wine-taster does a group of glasses. When I managed to produce them, I felt instinctively when some of these typed expressions fitted smoothly into the slot in which I had dropped them. It seems to me that it was at the instant that the other person recognised this success that we achieved some kind of reciprocity which was not unrelated to "normal", non-autistic conversation, an experience that the toddler Lucy had never had.

In those sessions with (my teacher), the hand on my wrist was calm, firm and self-contained. In real terms my social impairment is still so severe that I doubt whether I would ever have responded to this approach. She did not excite and irritate me to the point that the internal language spots could enter my visual processing and motor movements. Rosie had exhorted and laughed, and Jay now bribed, giggled and growled in a tempo she had deliberately invented. I could almost borrow their reactions to enhance my own awareness of what my body and mind was doing. This liberated my attention just the right amount for at least some of my typed words to be intentional.

As it was, I did not particularly want to type with anyone at Special School. All I wanted to do was to shake the dust of the place from my shoes forever.

That winter I was to feel terrible in myself, in spite of all the wonderful things that were happening. I had come off Tofranil, and was now taking Clomipramine which was less unpleasant than Tofranil. However it did not seem to have stopped the cycles of nausea nor my general terror either. I was beginning to realise that I was suffering pain in my joints at the time I was frightened and vomiting. When I was younger I had not identified this disconcerting feeling as pain, possibly because when I indicated the general area below my hip, and spoke, "Dore leg!", the other person would check it and, when she found now cuts or bruises, would look at me and say, "No, Lucy, you have not got a sore leg". In typing I could express it with much more accuracy because my typed vocabulary included verbs, tenses and prepositions, to say nothing of pronouns.

I have a piece of Canon Communicator tape from about this time which must be my answer to Jay saying, "How do you feel?" "WORSE HAVE A REAL HEADACHE MOR REAL PAIN IN MY THROAT LOTS OF ACHES IN MY JOINTS SORE Y AWFUL."

I had placed the unpleasantly painful sensation in context, and my brain had shunted the result through whatever channels create a filing system for subjective expression of a conscious experience. For the first time I knew that my stiffness and clumsiness at certain times was not simply a result of something that only happened in my lost thought-processes. My language had made discomfort real because I had had an appropriate response from someone else.

(My grandmother made her annual visit that winter) Jay brought her up to date on what had happened within everyone's lives since her last trip. It was partly these repeated annual recitations of the year's events, and Jay's and my sisters' success in bringing our daily activities alive for our visitor, that brought home to me some sense of the narrative quality of ordering one's own life against that of other people, and that stories differ when they are told by different people, and even when they are told several times by the same person.

**********

My teacher, Mrs. Wong set me the task of keeping a holiday diary. It was Jay's job to see that I wrote it. In doing so, she finally jettisoned the idea which I have heard people express, that writing about personal things was something that I should only do when I "needed to". I think she came to the conclusion that having language was a privilege which brought certain obligations. I had started off ungraciously, but after a few days developed a declamatory style that I thought was very appealing.

We could scarcely take our little yellow car the eight or nine hundred kilometres to Sydney, so Jay twisted (my brother-in-law) Laurie's arm and borrowed the rusty Kombi:

On 26 September 1987, my diary read: "Today I write this from Lakes Entrance (300 Km. east of Melbourne). We are on the road to Sydney, and only have got here (i.e. have got no further than this) because Laurie phoned this morning to tell Jay that his campervan had a broken fuel pump. There was nothing wrong with it according to the man who was the expert (the mechanic), but Laurie wanted Jay to drive to Sydney with the back open, but Jay refused because she did not want to be aphyxiated (asphyxiated).

"(Then) Jay helped Laurie fix the brakes. When we finally got going, Jay drove really fast until past Yallourn, when we stopped for a snack and I said I was frightened.

"We had dinner at the pub, and Jay made me eat a whole plate of chicken snitchel (schnitzel) by not letting me drink my Coke until I had finished. She had whisky for her nerves."

The word "said" did not exactly mean that I had spoken or typed that I was frightened. I had sat in stunned, rocking, smiling terror as the bitumen slid beneath the box front of the Kombie, but when we drew to the side for a cup of tea and Jay wrestled with the gas burner in the van, I opened my mouth and warbled my feelings across the picnic ground, so that small children swinging in the distance scurried back to the next barbecue, and then their father's car scrunched back to the highway in very quick time. It was only when my embarrassed mother pulled the Canon communicator from one of the bags, and stood over me glowering that I managed to use enough language to ensure that the rest of the trip would proceed at a snail-like pace.

The next morning we were on the road by a little after sunrise. We drove through a very beautiful section of the temperate rain forest of East Gippsland. The eucalypts glowed gold and silver, and the air was like spun sunshine but soft enough not to stun me. I was suddenly aware that Jay was talking out of the golden light.

Her voice flooded and fluttered, "After seeing you type that paragraph, with its clear introduction and ending, with the thread of understated humour running through, and having such fun in writing like that, I don't think we can go on like this. If you like, I'll apply for funding for integration into a High School."

**********

# 1.4 - Hands, Knees and Wriggly Brain (Written 2011)

Let's time-travel a quarter-century. It is 2013. As I type this page I am using one finger, the right forefinger. I am looking at my hand and my mother sits on my left. Sometimes she puts her arm around my shoulders. This way my body can register where I am in space while I focus so that my hand and finger are completely part of my movement-driven language. If she does this today it will be because I have started describing subjective experiences and the stress of that makes me giddy. When I am particularly distraught she may lean her leg against my knee.

However now often I type with no physical contact. As a rule that only happens when things are very quiet and I am comfortable with what I want to say. I may also use free-hand typing when I have to show someone else how my hand is moving of its own volition. This kind of demonstration is also a good way of asking someone to look at the additional roles of the communication partner over and above physical support. I will get to that a few thousand laboriously typed words further on.

But in 1987, when the teenager that I then was, first used coherent language, I needed the most familiar helping link in the life of any child. I did so hand-in-hand with someone else. A few months later I moved on to having the other person touch me on the forearm, but the impact was pretty much the same as being supported on the hand or wrist.

I had always fought being led by the hand, but here I was leading the person supporting me. I was in control of the movement.

This kind of activity is often called "facilitated communication." (FC) but I prefer to name it "typing with a communication partner" (TWACP - Oh, only joking! The world has enough weird abbreviations, don't you think?)

Now I need to explain that although some people who have physical disabilities, including deafness and visual impairment, also can have an autistic disorder as well, autism itself is defined as a disorder of the brain. There are some actual physical differences which may be described in some people with autism, such as sound sensitivity, toe walking and clumsiness, but the key diagnostic points are the way we use language, relate to other people and organise ourselves.

That is, autism is seen by professionals as a problem with brain function and is diagnosed and assessed by behaviour. In this sense "behaviour" means things that a person does, and how she or he carries them out. It is a psychological term, not a way of saying someone is "good" or "bad".

Of course these days, (2013) there is a lot of weird medical stuff in the research world, and lots of people are working with sensory therapies and diet. I have had good experiences with both. However the main "scientifically proven" therapies for autistic disorder concentrate on creating behaviour and communication strategies to make the person operate more like other normal people.

Now even for someone with an autistic disorder in what is known as the "lower functioning" end of the spectrum, I could be very mobile and that still is so even now I am forty.

Very active and occasionally competent people with autism (as I was and am) are not seen as needing ongoing physical assistance. Even back then in 1987 I could also do things like make a sandwich and tie shoe laces. Of course some of those skills had taken a lot of training. In fact some hand-on-hand work forms part of many therapies for people like me but that is slowly withdrawn as the student masters each step. Support is considered temporary. The objective of any therapy is independent actions and ultimate mastery of the task as a whole.

So for people with autism and some other "intellectual disabilities" hand-over-hand instruction and other physical contact is a teaching tool. It is not an ongoing and permanent strategy to counter the continuing movement and perceptual oddities that I now know I had always lived with.

That is where I lucked out. In February 1987 everything changed for me. As you have already seen, I met Rosemary Crossley, (http://www.annemcdonaldcentre.org.au ) an enthusiastic maverick who thought of communication partly in terms of using written symbols as targets for hand movements that she enabled people to make towards letters, those building blocks of language. Where the person could not reach the target on their own, she provided some ongoing physical support.

In _Lucy's Story_ (p. 61-2) I describe how I had seen Rosemary Crossley on television when I was a small child.

"I was also aware of various news stories, and clearly remembered what was a big media occasion in Melbourne when, through her introduction to an alphabet board, Annie McDonald, a young woman with cerebral palsy, was found not to have been severely retarded, but indeed very intelligent. I was only about six or eight at the time, so did not understand what this implied about the connection between speech and reading, though her friend, Rosie Crossley, remained in my visual memory, along with Ernie, Jimmy Carter and Humphrey B. Bear, a human dressed in a bear costume, who had his own show on television each morning and whom I particularly loved because he did not speak and his face never changed, so I found him easy to understand."

So when I described first meeting Rosie, the unabridged version includes this passage.

"I puzzled briefly at the expression of enthusiastic determination framed by straight shoulder-length black hair. Then my memory reached back, positioning me on the carpet in the living room of my now totally destroyed childhood home, my father's cigarette smoke in my nostrils and on the television screen before me the same face. Eight or ten years had not made her any less striking, and, even though she was not enclosed and diluted by a square glass bubble, I had no difficulty in understanding who this person was."

Rosie was experienced in supporting people with cerebral palsy who had very little movement, or had a lot of uncontrollable spasms and other jerky movements.

So in the way she had always worked, failure to communicate may just as well have been an inability in the body to express language. From that perspective a lack of speech, or speech that was different from that of typical people, may have been from some physical inability rather than a brain disfunction (even though it may originate in a brain disfunction which involves movement). That is a gross oversimplification, but is enough for the moment.

Now, when I see Rosie and other people supporting clients with Cerebral Palsy as they access various communication devices, I see the first concern is to place the client's arm in a position where that person's hand could reach the letters.

There are so many problems with movement in CP, and I really know so little about it. I do know some people seem to be in uncontrolled motion and need to be supported on the arm in a way that allow them to make wide gestures to bring their hand to a very big board with fist-sized letters. Others have very little movement with a droopy, rigid look to the hand, so the partner covers it in hers and holds the board very close. Then recently I saw a video of someone with a static board on a table. Her fingers were not easy to control and so she needed someone to hold her wrist while she worked on her device and each touch on a letter could take some time. I know that she does use typing sometimes without touch but like me on occasion she needs help. So in each case these people need support in many situations to actually have the board in reach.

So the first issue is for the keyboard to be in the reach of the typer. That is not an issue for me now, but for the first few years it was. That is because, in spite of not having a problem with finger isolation nor with reaching out, I lacked the three dimensional understanding that I needed. In some of the photos in the picture gallery at the end of this book _(Appendix 1)_ you can see my hand, wrist or forearm is supported in a position which is in reach of the device. So I do understand this aspect of what is happening. The placement of the board is important, and because the typer has an unusual range of movement, restraining or lifting his or her hand is part of the way in which the board is positioned.

Of course this is a coactive support. When Rosie was helping people like her most well-known student Anne McDonald, to be in a position to touch a keyboard, Rosie was doing so naturally and in cooperation with Anne. Ordinary people use the muscles, ligaments and tendons of their arms, backed up by the way the rest of their body moves, to reach what they need or what they see as meaningful. Some of us need a little help.

For Anne and the other people I mentioned, with this support they are now in a position from which they can make a movement towards the letters they choose, and their partners follow their lead while supporting their arm. To make that clearer, the supporting hand is moving to follow the muscle impulses of the typer.

One can see that the support totally is important and probably essential for someone with limited movement whose main disability is cerebral palsy. So this would seem to mean that this intervention is not necessary for someone like me. I appeared to be able to do so many things with my hands. I could even type on an electric typewriter we had in the house, churning out words like "Just Jeans", "Vegemite", "Coke" and "Safeway", all of which meant something to my obsessional, image-spurred autistic persona. However, very sadly, they simply didn't link into requesting. That is, the words I typed free-hand didn't have a function. I had no visual link between them and what they represented for other people. Therefore "Vegemite" was a picture of the word on the label. It simply didn't link with the black and delicious goo in the jar.

You are totally confused by this stage? Good - not the only one! I was a very mixed up kid. By the time I was fourteen years old, I couldn't see (in both the literal and figurative sense) why I couldn't think-talk like others. And, in any case, why were they so obsessed by being communicative? The reason for my difference probably permeates all corners of my rather wriggly brain.

Let's return to my teenage self and the chaos which I caused!

**********

# 1.5 - Chapter And Verse – An Achiever in Embryo 1987-1992

Doesn't going to school and coming home

Give anyone some simple aim down the years?

No, because to learn how doing can be achieved

One must be seen to be an achiever in embryo.

**********

Editor's note.

_Lucy wrote that verse one afternoon at the end of March, 1988._ Patchwork of Phrases _ends at the beginning of October 1987 with my offering to explore options for Lucy to leave Special School and attend a High School. A few pages further on in Lucy's Story she wrote,_ "The week after our holidays ... Jay, feeling a bit of an idiot, reluctantly got the wheels moving towards my changing schools, cramming phone calls and other preliminaries into her lunchtimes."

Well, by March 1988 Lucy was enrolled in our local 7-12 Secondary College which then had about 900 students. Glen Waverley Secondary College was a conventional state high school of its era. It offered an academic curriculum and its students tended to be successful in achieving university entrance. At that time it did not have a Special Education Unit.

_Lucy was a student there for four years, she attended classes on a full time basis with "facilitators" who were members of the school staff (_ See Appendix 2 - 5 _) and then in 1992 entered Deakin University entirely on her academic merits as an undergraduate BA student._

_In that first year at Deakin, in the intervals between university assignments Lucy wrote what was intended to be a chapter in a friend's collection of case studies on autism. That book didn't get off the ground, but in November 1992 Lucy sent "The Chapter" to a number of people who knew her, including Dr. Tony Attwood and the late Dr. Bernard Rimland._ (See 2.2 - San Diego to Seattle).

_A short section of "The Chapter" related to her time at High School. Later Lucy expanded it to the middle eight chapters of_ Lucy's Story _, including letters, diary entries, transcripts of videos and interviews, and teachers' comments - to say nothing of her own memories. By that time Lucy had learnt the skills to incorporate other people into her scenes and even to create direct speech in her writing. However because of the excitement of this first, introspective draft written less than a year after she finished High School we would like you to read this part of "The Chapter" in its original form and phrasing, along with this poem celebrating her first successes in the mainstream classroom._

**********

Rare Bird Flies High (10 April 1988)

Mere being is not enough,

Having meaning to being is all.

Aiming high hurts less,

Because being boosted to incredible heights,

Is being allowed to fly on the winds of life.

Kind people should not fear for me

As I hover above the fearsome marshes of my handicap

Living life as I never dreamed.

**********

So there I was, aged fifteen and seventy kilograms, as autistic as ever, embarrassed, resentful and with with my food obsessions unchecked, singing fragmented nursery rhymes in a Year Nine mathematics class. And I passed, and did well in all the academic subjects though socially all would have been a disaster if the autism had not been allowed for, and had I not had structured supervision in as many situations as possible.

The way that High School put up with me and allowed me to learn and grow to at least a less chaotic person, and the contribution of the people who sat with me in class and put up with my peculiarities was so wonderful, for the underlying problems of my disability were always there and the fact that the environment had so many and other problems for me was not recognised, even by me.

While still at Special School I had typed to my mother, for the first time telling her about the agony of noise during the assemblies in the brick walled quadrangle in the days before my periods, and so my sensitivity to sound at that time was recognised, but I did not then realise that a lot of my need to move or make noises was to counter noise.

That did not only mean loud noise, and there was plenty of that as the High School buildings were clad-timber and echoed, and the lockers on each side of the corridors vibrated with every footstep of each of the thousand or so people who galloped through them so many times each day. I still was unable to spontaneously identify the discomfort (I had from) very soft noises like fans and other continual background noise.

So on occasion my behaviour was quite inexplicable. Also I had total ignorance of the fact that although I was getting most of the information from the teachers, I was missing the nuances of inflection and expression, and was relying on a dual input of experience and the written word to cope with the challenge of the curriculum.

Of course the instant absorption of a printed page was a kind of advantage, but that left an enormous amount of empty time to fill with countering boredom and sound. I never once regretted the decision that I had made when my mother gave me the choice to change schools, anticipating as we did that the pressure to accommodate my problems and behaviours might have led to failure.

This difficulty was compounded by my unrealised yeast allergy (later identified as much wider food intolerance) and appalling bouts of nausea, and what appeared to be stress-related illness made the whole thing into a regular nightmare for all the people working for me.

This sensory peculiarity was eventually solved, but the experience gave me a fresh insight into the relationship between nausea and balance and vision, because like most people I feel giddy when I am nauseous, but before (my hearing changed in 1992) the way my balance usually worked meant I never became giddy from motion.

That was a surprise, and also the fact that (a few years later) having a session of facilitated typing could help with that sensation when I was frightened. The funny thing is that when fear and nausea strike I have an urge to fight any kind of facilitation and the requirement of language expression.

However if the facilitator is insistent and assertive, a long monologue in typing on my part not only relieves the fear like any other conversation would, but also the discipline of the touch and my concentration on my own finger hitting the key gives my vision less flatness, and the strained feeling goes. That was always present, but I only recently noticed it. Strangely though if I simply type with a copying obsession (i.e. copy without support) and no coherent language, I am totally unrelieved and if anything I feel worse, though I may seem calmer.

**********

In the early days of using a Canon my mother totally boosted my confidence by admiring and expressing surprise at my comprehension and general knowledge as I typed. That had a later impact as the fact that she learnt through that that I waited for such acknowledgement to boost my wavering self-confidence. From this she became aware of the fast comprehension that I had of the almost imperceptible reactions of others to my success and failure.

As a secondary teacher my mother realised that the ethical requirements for the facilitator in making it possible for me to type school work for another teacher was quite different from making me experience success in using language. (So when I did homework) she did not speak and was particularly careful to keep her facilitating hand as still as possible and her face and body unresponsive. I found this very stressful but it was a demanding skill that she and I benefitted from later.

So she also reviewed her approach to practical tasks in the home where the environment was far more stable and my incoming information was less subverted by the demands of the wider world. When there was a need for reassurance that I was satisfying a demand, the way that I was able to analyse the slight shifts in the lines of a face was the cue that I needed. That did not mean that I was looking for approval, but the slight slackening or tensing of the mouth could be sufficient to make me work out that I was doing the right thing.

That also was a factor in (my) easy answering of a question by using a spoken word that was usually an affirmative (even if I didn't mean it), or a demand for food, as that was what was expected (by the other person). After I began to use typing, the way that my mother started to understand that I understood what I was being asked to do but that I had no automatic response, made her simply stand and wait woodenly to see if I could work it out, or consciously vary the words or gestures or even the direction of her eyes when asking me to do something.

That was a slow and often exasperating method, but I did get a bit less dependent in the way I made decisions. At school (this applies to High School) this was not as successful as each person very slowly had to get to understand the problem, because it is almost impossible to explain it until the other person has experienced the whole strange difficulty herself.

By the end of my fourth year at High school the way that I had been supported and encouraged had resulted in being tolerated and accepted as a full, if odd and disruptive member of the school community. The pass I scored in my Year 12 course (1991) met the entrance requirements for Deakin University in Geelong which was about one and a half hours drive from Melbourne.

**********

To read about people who worked with me at High School, please go to the end of this book to
_Appendix 2 - School Scenarios - Enter the Heroes - Grania 1988_ (Interview)

_Appendix 3 - School Scenarios - The Determined and the Brave - Jaime 1988_ (Classroom strategies)

_Appendix 4 - School Scenarios - Mapping the Classroom with Pauline_ (Sue) 1989 (Fictional reconstruction of classroom participation)

_Appendix 5 - School Scenarios - Concentrating on Communication - "Petra" 1990_ (Interview)

**********

# 1.6 - Tentacles of Thought (Written 2011)

We are the tentacles of thought.

The folds of our palms are the history of our grasp

We are the definition of "human".

Long live the opposable thumb! (From _Hands_ \- written 2010)

**********

"Facilitation" is linked in most people's minds with typing, so I will use the term "typing" and "supported typing" as well as "facilitated communication" when I am talking about using a keyboard.

However I think the lessons from our experience are applicable over a much wider range of activities. For several years after I first started using "facilitated" typing, I also used "supported pointing" at food and so on. Before this, as do many people with autism, I had simply reached impulsively at objects about which I had an obsession, whether or not I really wanted them. So this gave me real control over choices.

"Facilitation" is different from "prompt". "Facilitation" is an enablement. "Prompt" in this sense is intended to steer the disabled person's hand to make a movement which will eventually become part of an unassisted skill. This needs good muscle-memory in the person who is being taught the skill, as well as a real understanding of the purpose of the task!

I have always learnt self-help skills better through deliberate backward-chaining or by parallel-movement because both of these can accommodate visual and intellectual processing, even when they are as odd as mine. In _Lucy's Story_ (p. 18) I have tried to explain why I didn't retain skills people tried to teach me in this way. I wrote,

"(As a child) each time I was introduced to this kind of practical skill by new baby-sitters, and later by teachers, it was as if it were the very first time, because the concrete movement in my own body was in a completely different universe from the world of chaotic artefacts which I was expected to place in some kind of arbitrary order. In the fullness of time some of these tasks became comprehensible, but this did not mean that I was motivated to perform the jobs that all these people considered important. Once my universal view began to expand as I got older, I found their irritation satisfying."

I don't know how this applies to non-autistic people with severe movement disorders which prevent them from using fine motor skills. However I expect that there are points in common in our understanding, even if we use our bodies differently. In the sense of enabling expression, or even practical skills, "facilitation" means allowing the user to take the lead in the first place. Touch may unlock movement.

**********

In "The Chapter" (see above in _1.5 - Chapter and Verse_ ), as well as talking about childhood and starting at High School, I tried to describe using "typing"

"The description of the sensation of receiving that help is very difficult, so I think that the easiest way around it is to say what it feels to type without "facilitation". The typed words that for a few years I had been in the habit of bashing out on a mechanical typewriter had been obsessive trade names, mainly of food shops and of any shop which I believed to stock denim jeans. To this day I cannot be left at a keyboard without supervision, or the same activity will result.

The lack of meaning in the output far more than I know carries frustration, because the seeping-away and wasted intelligence totally is frustrated. A hand on my arm or wrist makes a comfortable control, and a continual challenge by the difficulties of sustaining my concentration makes coherent language overcome the intellectual cascades of my internal thoughts. The mystery is why that is so, and what underlies the interchange of the communication.

The way that some years later I could get the same effect without a touch if a very experienced facilitator holds the keyboard still, makes me believe that there is a need for reciprocity to shore up the problem that my own fragmented internal language did not allow me to develop in my own soliloquies. Whether this is true of anyone else, and whether even in my own case there is more than overheated imagination in that description, I do not know. All I know is that some kind of touch or reciprocity makes me calmer, and the greater certainty of success in hitting the key that I visualise means that I can express the visual language which for so many years I had been cherishing."

So the word "facilitation" in this sense isn't the same as in the expression "to facilitate a meeting". Nor does it just mean to create a path (metaphorically speaking) for reaching certain objectives. It means to make it easier for the typing person to feel and see their hand or the part of the body they are using through the coactive sensation of touch.

At that time (as a teenager) I needed someone to hold my hand in this way because my body was so distant from my mind, and also so indistinct in my vision. The effect of someone supporting my lower arm or hand was to make my brain, eye, very embryonic written language and my undeveloped words come together. I needed the physical interaction.

More peculiarly, although I was responding to people who spoke to me, at this stage I used language as if I were reading words in my brain. It was as though I were copying the words I fingered on to the keyboard from something I had seen.

**********

Now remember, I was nearly fifteen, and if anyone, whether it's me, you or someone we can't even imagine, starts using any kind of complex language for the first time when they are nearly a grown-up, there are going to be problems. And, WOW, were there problems! You will see some of them as you read the book.

As I got better at predicting and understanding my hand movements, my mother and other partners were able to create different physical accommodations. I began to type with my facilitator's hand under my forearm, and later under my elbow. Many years later we achieved my current style of typing.

However in essence the thought processes of how I bring my language to a keyboard are unchanged over the last quarter century. When I think about a word, I still have to track my thought over a mental screen. That is rather like an imaginary laser pointer on a paragraph projected for an audience of one, and my hand kind of replicates that.

That is, in my mind I feel as if my hand is moving in the direction of each letter-key, but that impulse doesn't transfer itself to my real hand unless something is triggering the movement. By trigger, I don't mean a jerk or push.

If you were to point at something, the trigger would be your intent. However the intention or motivation in my mind somehow gets lost in my body. For me, touch is the conduit that gets some kind of impulse more organised. (Check out _Appendix 1 -_ _Picture Gallery_ for "1989 Newspaper Clippings". There is a description of what was happening about three paragraphs further on.)

The majority of people with autism become incredibly physically uncomfortable if they feel someone touching them lightly. This is true of me too. However a firm hand following my movement is like how I feel when floating in water. Like many of my expressions, this image has a completely different connotation from that which it has for most people.

As a rule you would probably think of this as meaning being relaxed in water. For me water is a support that makes my body really know where it is. I am more accustomed to feel fairly coordinated now because I have developed slightly better skin and balance sensation, but that has happened fairly recently.

In the _Picture Gallery_ , there is a picture from a video we made in two years after I first took a Canon Communicator home. It is 1989 (Year 10 at High School). I am creating a folder of newspaper clippings for a homework assignment. This photo shows my facilitator, Jay, holding my left hand though I am not using that hand. She was doing this to be a "support" for me to make a cutting action with my right hand. She was making it possible for me to tape down newspaper articles. I had already chosen them by pointing and typing their headlines. Then I had cut them out by following black lines she had drawn round the ones I wanted.

(Editor's note: On this occasion Lucy had not needed this kind of "support" to follow the black lines that I had drawn as it was a mechanical skill - although she probably had not been very precise in how she cut. However in chopping off a piece of tape, she was making an independent judgement as to the length she needed. For some reason although the act was simpler, this kind of decision-making adds to the complexity of a task. It took at least another twenty years before she sometimes spontaneously made fairly accurate decisions as to length, size and so on although she had the manual skills to carry out this kind of task many years earlier.)

Jay knew that once my tape-cutting movement had begun, she would tighten the grip of her own hand on my left hand and I would move the scissors to the roll of tape with my right hand. However she didn't realise that I could not see the scissors at that moment.

On the video from which this is taken one can clearly see that I rather clumsily sign "scissors" which is what you see in the photo. However Jay did not realise that I had done so until she saw the video because my hands were not in her direct line of sight. I wasn't trying to communicate. I was signing to myself ("where on earth are the scissors?") though as a rule I couldn't use the signs I had been taught. The sign was almost certainly triggered by her holding my hand. This was natural facilitation, definitely not prompt, and the action is definitely all my own.

Now the same kind of thing happens in typing. "Supporting" someone in this sense allows the "typer" to take the lead while inhibiting involuntary movement. In principle it doesn't matter if it is hand-over-hand when the person needs help to reach out (see _1.4 - Hands, Knees and Wriggly Brain_ ) or whether it is just a light touch on the shoulder. The touch component is important for:-

\- triggering movement

\- getting some awareness of what one's body is doing and

\- knowing what it has just done

With an accustomed partner and with a lot of practice I have been able to get something of the same effect with no direct touch. That took nine years for me, working on this with one person only. Sometimes I need spoken re-inforcement right after I have keyed in each word or phrase. This is a memory issue. I also need my partner to be close enough to me for me to picture her as a surrounding presence within which I can moderate my visualised body movements. More of that later!

Jay tells me that it is easier for her to be sure that she is not influencing me and that I am producing the language I wish to use when I have my hand or arm in her hand. That is because she can feel me pull towards the letter or symbol and _against_ her fingers. When she is not in contact with my typing arm, it is only through deliberate visual monitoring of my finger-movement and awareness of my whole-body-movement that she knows, or can attempt to predict, where I am going.

Although I think of "facilitation" as being more about language than communication, one feature of typing with a partner is that it involves two people, so there is communication even if it is not intentional. There are all the strengths and problems that occur with close-contact communication. An example of this is subjective understanding on the part of both parties. This is relatively normal in speech communication. I tried to work this out for myself in writing _1.2 - Words and Deeds_.

When my thought-finger hits the key and a letter comes up on the screen, or when I get feedback from my arm moving against support and sometimes from spoken follow-up from my partner, somehow I have an approximation of what I think is a slow-motion effect of speech production in those who converse normally.

But there are differences in this kind of language because the "facilitator" contributes another dimension. She acts as technical advisor and intermediary. She deliberately substitutes her own actual person into the social role the "typer" cannot perform. She also acts as advocate.

Experienced "facilitators" learn to multi-task, whether in the classroom of somewhere else. This is because they are working with a person needing intellectual and behavioural back-up and sometimes physical care. At the same time they have to explain - or at least pass on - what the "typer" intends, and also produce an environment in which this rather unusual exchange can take place.

**********

# 1.7 - Typing with Touch - The Role of the "Partner" (Written 2012)

"Facilitation" (in the sense it is used in this book) is the act of someone making it possible for me to type the word that I intend. That is the general principle, whether or not I am doing a set exercise or raving on about some undetermined topic.

In _1.6 - Tentacles of Thought_ you read, "'Facilitation' is different from 'prompt'. 'Facilitation' is an enablement. (Whereas hands on) 'prompt' in this sense is intended to steer the disabled person's hand to make a movement which will eventually become part of an unassisted skill".

In _1.3 - A Patchwork of Phrases_ _1987_ there is a quote from _Lucy's Story_ (p. 94) "What I did not realise then was that when I tried to plan its movement, I was unaware of the exact position of my fingertip in time and space, much as I was uncomfortable walking on slopes because my foot and my sight were sufficiently out of sync to make me uncertain as to the exact moment my sole could start to bear my weight. I was not learning to type. I was learning to help other people to enable me to stumble around the keyboard so that I could use my underdeveloped internal language in the way I thought speech and writing were used by everyone else".

I really only began to understand this several years later. When you get to the last paragraph of _2.4 - Sidekick to a White Rat - What Jay Saw Jan-March 1992_ , you can share this **Eureka** moment.

As I described in _1.6 - Tentacles of Thought_ my need is for inhibition of (some of) my hand movements as well as help with awareness of where my hand is going, and what it has just done.

As I have said, "facilitation" in this sense involves assisting the "typer" to increase movement, and in some senses I guess this applies in some way to most people using a keyboard to make sentences the way that I do.

However an equally important component in movement issues in autism, and Cerebral Palsy and I understand, some people with Down syndrome is inhibition (of unwanted movement). That gives the other person a fairly dynamic role and implies a partnership.

Because part of "facilitation" involves inhibiting my unwanted movement, there is always room for error on the part of my partner. Of course I can make mistakes too, but you won't find me admitting it (Joke!). I prefer to consider myself perfect - but then who doesn't?

As a rule people growing up with so-called "normal" speech are able to reinforce practical skills, learned sequences and interactive social encounters, including affection, by repeated vocalisation not spoken in recitation ( _Editor's note: i.e. which is not a ritual_ ). Unbelievable to say, I have real problems imposing my will on someone who doesn't know me really well.

For me, being "facilitated" by someone who is sure she knows what I want to say can be worrisome, but my most efficient partners will have learnt my hand-intentions and movements in formal writing tasks. So if an informal real-life topic comes up, they usually have the experience to make sure my contribution is in a similar tempo to how I type when happy and relaxed.

Of course it is important to make sure that intention, significant narrative, assessable academic work, etc. does originate with the "typer". That is where the skill and deliberate self-control of the "partner" comes in.

For example, one way a practiced "facilitator" can double check is by deliberately making it difficult for me to reach keys which give a similar reply to the first one I type. Then I have to work out another way of expressing an expected statement which is a good intellectual challenge. ( _Editor's note: i.e. Lucy will use another word or compose a different sentence which indicates she is expressing the same thought as the first effort._ ) Intervention is part of a "facilitator's" job.

Influence is part of normal interaction during the instinctive choreography of conversation. When you get as far as _3.10_ \- _Picturing Conversations 2013_ , you will see "I talk about the overlap in speaking people's conversation. Somehow when interacting with people in the same cultural enclave, we as a species have an ability to anticipate and respond to cues that have hardly begun to form. Can this be related to the interaction involved in my kind of typing?"

The only odd thing about it coming to notice in research on "facilitation" is the population in which it has caused the most concern - those of us who have autism. Further on in this book in _Lucy's Song - 2007_ you will read the following two paragraphs, but yet again I am giving you a preview because I think this is very important.

"For many people facilitation – that is assistance in concentration and making sense of body movement – is the nearest they come to interaction. And it is ... funny ... that the principal objection – but have to say not the only objection – to hands-on support is the possibility of influence, and the likely feeling of close emotional connection, both of which are typically deficits in autistic relationships!

Can you imagine the excitement if a non-speaking man with severe behaviour problems reacted to affectionate touch or subtle communication prompts? That is the response which facilitators report, and yet is disparaged as having a deleterious effect by the people who demand communication without facilitation."

Now, being a "partner" is not necessarily a complex job as far as I can make out, ( _Editor's note: Oh Yeah!?!_ ) but to make this activity rewarding and productive, not only does it require

\- training (even self-training), but also

\- practice between the two individuals involved and

\- real understanding, particularly by the "facilitator" (of what is expected of the person in this role).

This is because she or he is operating in many different roles in relation to

\- the "typer"

\- the other people involved in the overall situation

\- the scenario, for example - classroom, - home setting, - agency, - work place etc.

Some dyads take a long time to skill up, and some people just don't seem to make the partnership connection, even if they like each other. This can include parent and child, which is puzzling, but I guess is no more puzzling than other aspects of this conundrum.

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# 1.8 - A Sense of Wonder - Knowing My Hand (Written 2012)

In the early days of typing, I didn't distinguish between just being touched and what in this book I call the "support". It was only after about ten years, and when support was almost always unnecessary, that I understood that several things were going on. It was then I began to realise that my own hand movement cued my brain as much as my eyes and brain cued my hand.

That had not happened with the kind of spontaneous actions like flapping or twiddling which, like many autistic kids, I did a lot when I was small, and still did until very recently. One reason was that because when I flittered my fingers I had got good feelings. That was also from a kind of visual feedback but different from the meaningful movement of "typing". The good feeling had happened even if I was only seeing my movement in the very corner of my eye.

Of course I had thought about actions when I had to do what I was told, for example picking up things I had dropped. However my response to that kind of instruction was much slower and more like a problem solving exercise. It wasn't only the difficulty of making the movement itself. It was also planning the action, then making my hand do it and (above all) working out what it was doing while it was moving. It was all a bit more complex then without the touch stuff. These days doing practical stuff is a little better, especially in the last few years.

However even after using a keyboard for twenty five years, often the urge in my brain is still very slow to drive movement if I am not touched when I need to point at something. Occasionally a spontaneous gesture or point can be triggered by a sense of urgency or a visual impulse. I have got to say that is very rare even now, and usually it only involves a single letter, item or direction.

For example when selecting stuff in a supermarket, I didn't learn to point with my arm until quite recently. Up till then I would just stare at something, and hope my companion caught on. When that happens (whether I am pointing or looking), unless my companion is already watching me, it is likely that this isn't particularly communicative.

Communication, by the way I define it, must be both intentional on my part (even if it is a subconscious intent) and actually be accurately received by the other person, else it is a mis-communication. Because all my attention is on my own movement, with perhaps a little spilling over to what the gesture means to me, the effort of doing these tasks excludes my being aware of what the other person may be seeing.

I should add here that although I have always had some spontaneous eye contact in a way that other people consider more "normal", this has got more so since I had a very restrictive diet in my late thirties. Also although I do have some indistinct spoken words, I can only produce what I call "embedded" phrases if I am in contact with someone's gaze. In much the same way, even these days, although I can follow the gaze of someone very, very well (shared attention), I don't have the ability to use my own eyes to signal someone else. This is because, unlike my pointing finger, I can't see my eyes!

So, what was different when I began to use a keyboard with support was the sensation that I knew what my own hand was doing in relation to my thoughts. The main thing I remember from being supported on my hand in the first days of using a keyboard was a sense of wonder that, not only was I able to make sensible words, but that I knew what my hand had done and that I could plan myself where I was going to try to aim for next.

Of course I wasn't very good at it, and that was partly lack of practice. However over time I got better. So I do know the benefit of some degree of support for countering some of my proprioception problems. In fact many kinds of physical support have been part of my road to using typed language. However in my case the reason for the kind of way that I processed that support is obviously different from the way that someone with a severe physical disability does.

For now all I will say is that another of the simple components I have noticed with this physical assistance is a kind of cradled-lifting. And so, in the process of supporting her friend's arm near an alphabet board, Rosie also was providing a second benefit, that of being touched or held by a human hand. Sometimes, but not always, this involves skin-on-skin contact.

As I have pointed out, "typing" is only communication if the message is passed on. One feature of "facilitated communication" is that it involves two people, so there is communication, whether there is physical contact or not, that is even when the "typer" is working without touch with someone mentoring her, as I now do.

So, one component of this activity is the person-to-person contact which is implicit in this one-on-one exchange. There are all the strengths and problems that occur with close-contact communication. One that is relatively normal in speech-communication is a subjective understanding on the part of both parties.

The "touch" question is the underlying element of this whole strategy. Touch is an underlying component of human interaction, probably (and even especially so) because we have evolved without much fur, and receive a lot of contact in the first few years. Imagine early-human Mums carrying little naked kids in one arm clasped to their side, while traipsing across the Savanna or whatever! So, some of our body image derives from that experience.

Many facilitation users still have rather childlike body movements, either through life experience or as a product of their difference. I wonder if that means that the framework of the other person's body may actually provide a scaffolding within which one can produce controllable actions, or understand what is an expected response.

Some people have better involuntary responses when human touch is offered. For example there is the interesting fact that if I am in close contact with another person's body, I can interpret their voice better. That is because for me conductive hearing is more reliable than the ear-canal variety.

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# 1.9 - Beamed Down From Syracuse - A Pen Picture of Me 1989

In 1989 in that weird yellow-fronted shop where Rosie hung out along with her keyboards, her thought-provoking communication devices and her penguin-toy, I was part of a group which met with a visitor from Syracuse University in New York State.

Now it was our turn to transform a life and career. A year later an old school friend from my primary age autism centre, here identified as "Amanda", two new acquaintances labeled by Doug as "Peter" and "Bette", and me, for some strange reason tagged as "Polly", entered the professional literature. This peculiar theatrical script is on display in an article in _The Harvard Educational Review_ of August 1990, called "Communication Unbound: Autism and Praxis". Since then, for the last two decades and probably well into the future, the words "facilitated communication" and the name "Douglas Biklen" have been bracketed.

Wow! A Year Ten Melbourne kid in one of the most prestigious educational journals - Ooh - wait a minute - I have to show you his pen picture of me before we all applaud.

He had written,

Polly has several behaviours that are not uncommon for a person labeled autistic, including a tendency to walk on the balls of her feet and sometimes clap her hands together. At school she will occasionally pace from her locker about fifteen feet to the top of the steps and back. She has had a habit of picking up items such as a wad of dried gum off the ground and putting them in her mouth; if asked, however, she'll stop this particular behavior. When she's seated, she sometimes places her hands between her legs and rocks forward. When she types on the Canon or on an electric typewriter she frequently appears to be looking off into space, horizontally rather than forward. When I would meet her at school or at DEAL, I would extend my hand to shake hers. As I grasped her hand, she would pull back smiling.

However I am truly grateful that he wrote this because it is so difficult to show people who have read my writing the shell from which my typing finger protrudes.

In introducing me he had also said,

Polly is a fifteen-year-old high school student who attends regular tenth-grade classes. Before being mainstreamed for the first time in ninth grade, Polly had attended a special school for students with severe (sic) disabilities. As her mother rushed to catch her up on math and other school content areas, Polly grasped concepts quickly. Given a subtraction problem that would yield only a negative answer, Polly hesitated momentarily and then typed "BUT IT IS LESS THAN NAUGHT".

He was wrong on a few counts in what he wrote. Firstly my Special School was for kids who had a mild intellectual disability. The object was to offer practical skills and in those days some would go on to real life and employment. So the problem was that, although I had an overall measured IQ of just under 70 - that was even taking my abysmal verbal skills with a verbal IQ score of about 50 into account - I had behavioural and language processing problems that did not let me achieve in that environment.

Actually that school had been selected as being the least unsuitable when I left the specialist autism centre when I was eleven. I did learn some really useful skills there.

He went on,

_I asked one of the teachers to describe Polly's best and worst days at the high school. The teacher explained that Polly had attended the school for three months before being willing or able to communicate with her, and that her "best day" was "when she typed for me!"_ You can read Grania's account of that in _Appendix 2 - Enter the Heroes_.

The "worst" day was when Polly climbed a tree and pulled her skirt up over her head. Another bad day was when Polly urinated in the playground. Her mother believes Polly was testing whether the school would accept her and that she was saying, "look, I'm retarded - do you still want me??

That is probably a good way of sketching me to an onlooker, but he was wrong on a few counts in what he thought was going on.

Now, what was really happening, particularly in relationship to movement and behaviour? Well the skirt and widdling in the playground stuff wasn't what he thought. Putting my skirt over my head while sitting up a tree was genuine confusion.

The urination thing was because I had heard one boy telling another that he did not think I was very disabled, only badly behaved. I was so angry about having my autism not recognised that the effect was a crossover as strong as I get from very new polyurethane backed carpet - ask my mother why we only have cotton rugs!!! In spite of this he was able to add,

Students in Polly's high school English class regularly volunteer to be in discussion groups with her; the teacher says they recognise that Polly has creative ideas about the readings they discuss.

I had described this when I had written to Canada, to Sally Borthwick who had been one of David Eastman's teachers. In the letter I had said, "At Special School the (intellectually disabled) children did everything better than me, autistic behaviours being what they are. Now the kids at High School like me for being bright, because they know that my funny way of doing weird things is not the real me". (August 1989)

Doug also wrote,

But she still does not have classmates who she considers her friends. Polly told me that she worries about the idea of possibly having friends. She has not yet had one, other than her mother, her siblings, Rosemary Crossley, and people like herself who use facilitated communication. She is afraid. "I don't know what to feel," she told me.

The word "feel" (in my sense of the word - see the Preface, _Hi! It's Lucy Here_ ) is most important in that context because (other than stupid Facebook, of course) the idea of "friendship" as opposed to "acquaintance" is dependent on spontaneous interaction and having common ground.

Later as an adult I wrote a description of friendship as I understood it, but transposed it in my autobiography to the months after our meeting with Doug. Here is what I said.

"Friends came in different categories. The kids at school who spent time in my classes, and stood up to other kids who did not see how bright I was, were one category of friend. They worked across my warblings and screechings in class, and ignored the noise when I felt nauseous and vomited into the plastic container which had become a regular part of my school equipment. A couple of girls, Jodi and Tracey, even wrote me letters full of the latest 'goss', to which I replied with pompous notes on 'the Meaning of Life'".

I than revisited an observation I had made early in _Lucy's Story_ (p. 27) where I wrote that as a young child to me "faces consisted of shadows. A pair of small, circular shadows inside the eye, ... long mouth to inner eye shadows which ran along the nose, ... the mouth was a comfortable slit-shaped shadow ... the rest of the space ... was not shadowed enough (to) jerk the string which triggers the mechanism by which one member of the human species relates automatically to another".

So later, when I wrote about friendships at High School I said, "I was still bedevilled by my visual processing when it came to faces. Lines (i.e. shadows) had faded, but the contours of flesh were still invisible so that I had no instinctive person-to-person visual signal to compensate for my odd sound processing. So the image that I visualise when I think the word 'friends' is the written word 'friends', the people with whom I exchanged letters without the hassle of real contact, and who, in many cases, I still write to.

"The most special people were beyond the word 'friends'. They are the people who have helped me be a person, some of the family friends, carers, volunteers and teachers to whom I was close when I was young, and especially the people who gave me language — Jay, my sisters, Rosie, LO, Jaime, Pauline, and the others who since that time have sat with me, helped me control myself, and shared my minute by minute responses". ( _Lucy's Story_ p. 147)

If ever there is a rationale for someone like me typing and performing other activities with someone in close contact, surely this is it!

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# 1.10 - Connecting with Queensland 1990

A year later in June 1990 I met another visitor to Deal, this time from Brisbane. Dr Tony Attwood at that time was Coordinator, Specialist Services for the Queensland State Government Division of Intellectual Disability Services.

In _Lucy's Story_ (pp. 180-182 from which parts of this chapter are taken) I start off my description of that afternoon with the words, "I met Tony in the back room at Deal. We sat in a row, me in the middle, Jay being careful not to touch me but holding the Canon in front of me". Tony had just spent time with three other "typers" and was already impressed with how they used language when using a Canon. This is his version of our meeting.

The fourth person was enrolled at an ordinary school and was undertaking a school project on autism and wanted to interview Tony for her project. She was accompanied by her mother. Lucy was in her teens and upon meeting her, one was immediately aware of many of the behavioural signs of severe autism. She gave rare fleeting glances at people, did not show a range of emotional expression in her face and had several ritualistic mannerisms such as flapping her hands and gently rocking from side to side. She did not use any speech.

When seated, her mother held the Canon Communicator a few centimetres from Lucy's hand and without any point of physical contact between mother and daughter, Lucy used her index finger to type (see photo in Meet the Author "1990 with Tony Attwood").

_Throughout the hour of conversation (which was recorded on videotape), Lucy made an occasional nod to confirm her agreement but did not use any spoken or gestural means of communication. It was also apparent from the observer's point of view that although her mother held the Canon Communicator, Lucy's hand and fingers clearly moved independently from letter to letter. However, the staff explained that it had taken several years to achieve this level of independence._ (Queensland Report on Facilitated Communication, _Department of Family Services and Aboriginal and Islander Affairs (1993)_ _pp. 16-17_ ).

As I have said further on in this book in _3.10 - Picturing Conversations 2013_ , when I wrote about how I appeared that day and also how other people reacted to me, I did so "much as any researcher does when writing biography. I could use written sources and also video and sound recordings". Tony and I had both viewed the same video several times when talking about that meeting, though we describe it from different perspectives. This is part of what I said in my version.

"Tony went into a long spiel on autism, and how professional people used conversation and other tests as a guide to someone's intelligence, and ended up,

'It may be that some people with autism have a problem with communication, not that they are not intelligent. Did that answer your question?'

'NO.' I tried to explain that I could not speak, rather than not having language. 'BEING UNABLE TO SAY SOMETHING, ACTUALLY IS THE SAME AS NOT BEING ABLE TO MOVE IN RESPONSE TO AN INSTRUCTION!'

At this point, Tony lost track. He gathered up the paper tape, which by now had about a metre of words printed on it, and stretched out his hands to read, as though winding skeined wool."

**********

"There was a little fan-heater going. In blatant disregard for the comfort of our visitor, who had just jetted in from Brisbane, 1600 kilometres nearer the equator, I indicated I would like it turned off as I was pretty uncomfortable with the sound. However when Tony started to talk about his meetings with autism, both my hands went to my ears again because I was sitting next to him, and would have lost the sense of what he was saying in the rush of syllables and pauses had I not filtered them".

(Editor's note: In 1995 while writing her autobiography Lucy again watched the video of her first meeting with Tony. It includes her standing up and switching off the fan heater, and also her sitting with her hands in her ears while he was speaking to her. It was after this that she typed the previous paragraph.

This (1995) was the first time I ("Jay") had realised that blocking one or both ears was not only a way of shutting out certain noises, but also allowed her to listen to others when she needed to hear them. In other words it was a positive accommodation in more ways than one. (Try it yourself - it works on some frequencies.).

Although I was sitting with her at the time she typed this, Lucy didn't tell me this on a person-to-person basis. She was commenting on what she saw in the video as part of a description for an imagined audience or reader. This is pretty typical as Lucy very rarely "tells" her communication partner, or even another participant in a three-way meeting her reasons for acting a certain way.

In this case she may not have even thought it out for herself until she actually wrote this part of her narrative, putting what she saw herself doing on the video into language, much as she was describing Tony's movements when reading the long tape produced by the Canon.)

**********

"(Tony continued) 'My thoughts are that people with autism have difficulty understanding the feelings of other people, and expressing their own feelings in ways that other people understand,' he said.

"That seemed to me to be letting people without autism avoid responsibility both ways, but I let that go. Instead, because people in general seemed to have social problems relating to people like me, and as Tony had said that he knew hundreds of people with autism, I thought I would try the other track.

"'HAVE THE LESS SEVERELY DISABLED PEOPLE TOLD OF FEELINGS THEY SEE IN OTHERS?'

"I was talking about watching other people socialise among themselves, not others talking directly to me. When I was approached by someone, I often had some confusion because not all parts of their face were consistently in the same perspective. Sometimes I picked up the underlying sign and I got confused. So, if someone was tired but happy, I might see the tiredness and hear the happiness in her voice, but not realise I was missing something. However I could be in the presence of people who were not interacting with me, and observe them as if I were the researcher. I had the impression then that I understood interactions pretty normally in that sense. When I questioned him about feelings, I meant the latter situation, but he replied in relation to face-to-face encounters.

"'Some of the able people with autism who can speak have said, 'People give messages with their eyes, and I don't understand them',' he said.

"I tried to explain the difference (between understanding people face-to-face and observing those talking among themselves at a distance), but I was stymied because I had not then learned that my visual processing was a mystery to everyone else.

"I realised though, from what he was asking, that he knew a lot about the kind of experiences I had in everyday life. I learnt more from my attempts to answer him in the hour and a half we spent together than from all the years of eavesdropping or from occasional articles on autism I had glimpsed."

**********

And then in August of the same year, 1990, there I was, sitting restlessly in sub-tropical winter warmth in a restaurant called "Jimmy's on the Mall" in Brisbane. We were on holiday on Queensland's Gold Coast and had come into Brisbane by bus. We were waiting for another appointment with Tony, this time in a big old grey government building. When we got in there, I remember that it was divided into depressing rooms. Now Jay and I were an opportunity for him to let a couple of his colleagues to know what he had experienced at Deal because I was using the Canon in the same way he had already seen. I guess that, together with my watching the video, this is when I first thought seriously about what I had to do to show people that my hand was my own voice.

**********

We kept in touch and that Christmas Tony wrote, _"I would like to ask Lucy's opinion. I seem to remember you making a comment about making the wrong word or action from the one you intended, such as indicating 'no' when 'yes' was what you meant. A family I recently saw were concerned that their autistic daughter was lying. She was saying things that were obviously untrue, such as answering 'have you tidied your room?' with, 'Yes!' She may wanted to avoid the chore, but I wondered if sometimes she couldn't help saying the opposite of what she intended. Do you think this could be the case?"_

In my reply I was referring to the way that I produced speech, but I might as well have included typed answers (because there are similar factors in play when I try to answer questions on a keyboard).

I said, "The question that you ask about the saying of 'Yes' is desperately awful, because that kind of thing is something that has made my having autism so difficult.

"The expectation (by others) is that the simple answer will nearly match the way other people would think. (This) is really stupid, because the whole basis of my difference is that the processing of my information goes out (of sync).

"The question about a 'tidy room' is terribly difficult to work into my speech, and I would possibly do what that girl does, or echo, 'Tidy room' to show that I had received the question (not that I had actually tidied it up!). My mother would feel better if she had made sure actually what I had done before she had opened the subject. The question ('have you tidied your room') is so vague!"

What I meant was that not only was the question about room-tidying vague, in that it did not relate to something that was important to me (or to any other adolescent that I had met), but it did not refer to a concrete result that impacted on my own body or to something so obsessional that it was a part of me. That is why I had said that I could not work the question, rather than the answer, into my speech. ( _Lucy's Story_ pp. 195-196)

That is, to put this in context, once again you all need to remember what I said about "feeling" and how I process information from outside my own body!

**********

Tony must have found this kind of stuff useful because many years further on he read my autobiography and wrote a foreword which said,

_Lucy provides the point of view of someone with autism who has never used speech. I first met Lucy in Melbourne in 1990 and over the intervening years she has taught me more about autism than any academic text. During our first meeting I was immediately aware of her behaviour being consistent with the description of a person with classic autism. She appeared to live in her own world, made few intelligible sounds and at times her behaviour was quite bizarre.... Professionals who specialise in autism will be interested in how her descriptions are consistent with our theoretical models and the research literature._ **(** _Lucy's Story_ **p. vii)**

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# 1.11 - Speech without Communication: The Old Me circa 1991, (Written 2002)

Adapted from "Reflections on Language" originally published in _Autism and the Myth of the Person Alone_ by Douglas Biklen _et al_.(2005)

Editor's note: This section and other extracts from this book give Lucy's views on some of the long term effects of changes which arose from Auditory Integration Training, both in terms of skills (or lack of them) and in how she gained better understanding of her differences. Lucy's comments about "now" obviously refer to 2002. You may like to compare them to what she has to say about herself ten years further on in sections written 2012-2013

**********

( _Written in_ 2002) If I speak the words I type, I am reading them off the computer or from an imaginary screen in my head. If I link this to my language I can see the same process at work, but somehow it is reversed. Language in humans has many functions, of which communication with others of our species is only one.

That is I can see that using language also creates self-image and places one in space, time and society. That also allows self-monitoring and analysis within cultural norms. On a personal level, I don't believe I would have understood the lessons I learnt from becoming aware that my sensory processing was so out of whack if I had not undertaken to describe this on a daily basis. Using language allows relative understanding to become part of memory.

We often use the term "communication" when really we mean that we have observed in another human being a behaviour from which we derive meaning. So if my mother is deliberately angry with me to make a point to modify my behaviour, she intends to _communicate_ that anger. If she is angry (even though she) does not mean to show it but she is so angry that her behaviour is indistinguishable from when she is acting (i.e. pretending) her annoyance so I can get a message, that is a communication she did not mean to make. If she has enough self-control to wait until she is out of the room before she blows up, I don't receive the communication.

What is speech? I laugh to myself when the scientific community privileges our interaction over (that of) the animals. Perhaps the very complexity of the human brain makes us humans as a species having to work harder at abstract things. How can we say a sardine doesn't know the meaning of life? They don't necessarily become part of a silver flowing school by chance. To suggest that a cat doesn't know what death is would seem to be downright totally unobservant. But we big brained apes, because so much else is going on in our heads, have to work so hard at this, using different social construction to do so.

Where does this fit with the topic of vocabulary, autism, speech and communication? How much time have you got? I thought a lot of this out when I was writing _Lucy's Story_ , and some of the descriptions I have used in this piece of writing (i.e. _Reflections on Language,_ from which this is taken) are comments on the writing that went into creating Chapter 20 (of _Lucy's Story_ ). As this was five years on from my experiencing these realisations, and now (2002) I am a further five years down the track, it is reasonable to think that I have changed again, and I have!

Many of my stereotypical utterances have disappeared, though others have taken their place. In 1995 I wrote:

"In fact, the small amount of spontaneous speech I carry today had all been laid down before I was ten. That is, the basic words of my post-AIT speech were laid down at the age that I have been told that verbal autistic people develop speech. As a result the same things are tagged with the words that I used for them in my childhood world. For example, if I find my mother is packing clothes, I say "Camp" as a way of saying, "Where are we going now?" If I do something really nasty, and want to apologise, I say, "Better," which comes from being asked were things "better now" because "they" realised that often I was awful when distressed. That is, neither am I asking, "Are we going on camp?" or saying, "Things are better!" Rather, those words, "better" and "camp" have become meaningless sounds that are triggered by certain situations. (Presentation, Toowoomba, Queensland, 1995.) ( _Editor's note: None of these expressions are set in stone. For a different way of apologising for a tantrum see_ 3.10 - Picturing Conversations 2013).

**********

As I came to write more fluently, I learnt something particularly important. The speaking world expects abstract thought to be expressed in a way that readers and listeners can decode. The personal narrative is the most common framework for experiencing this, so here we go! I had used spoken words in a way I don't consider to be language since I was a toddler. When I started to use typing, my speech continued to be more of a handicap than total muteness would have been.

My speech really just bulges out of my mouth like a balloon, and the real thoughts in my head just keep on a direct line. The direct line and the balloon are related, but they do not correspond, and the more the balloon bulges, the less sense it makes, until it bursts, leaving all my thoughts scattered and me wild with anger and shame. (9 July 1988, quoted in _Lucy's Story_ p 135)

This confused me an awful lot. Later I described this kind of thing (using an example from my teens).

"For example, for years I have used the spontaneous word, 'Bertie!' to say how I feel. Although 'Bertie' the word is flourishing, Bertie the long-haired dachshund dog has been dead for about fifteen years — a problem, as no one apart from my family remembers him. 'Bertie' underpins several emotions, and the other person has to understand exactly what his link with the present is to be able to respond meaningfully.

"'Bertie!' I will snarl at Jay when I think she has been neglectful or unsympathetic towards anyone (not just me). She struggled unsuccessfully with Bertie's summer eczema for years before she had him put to sleep. I am simply having a memory-jerk into the mood that I personally was in when I saw him being led out of the door for the last time.

"'Bertie' is also my generic word for canine. That is the second use of the word. 'D-o-g' is an exotic import which has only recently come easily to my lips, though I had been taught it for many years. So if I see a dog my mouth flaps, and I speak.

"'Bertie.'

"When I stand without distress, and gaze over a large walkway flooded with people and completely dogless, one would think that this should be a 'Bertie'-free zone, but the furry long dog is still floating around somewhere in my speech processing.

"'Bertie.' My tone is interested, conversational even. Across the furthest corner I have spied a slightly built, dark-haired man with horn-rimmed glasses. What I am saying is, 'Oh, is that Dad? No, it can't be, but he is very similar to how Dad looked when I was small.' This was true of course of how Dad was when Bertie, his little mate Alex and, for two brief enchanting seasons, luscious litters of sausage-shaped puppies competed with Dad's feet, Jay's discarded reading matter and us five girls for space in front of the gas heater. (This blasting warmth was almost silent to the rest, but bombarded me with hissing jets and continuous vibration from the fan.)

"To understand the word 'Bertie' in all its glory, one has to be an initiate. ( _Lucy's Story_ pp. 44-45)

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# PART TWO - EXPLORING SENSATION (20 to 30)

Beside Niagara Falls July 1996

Leaning on rail and holding post

to help with sound of river

# 2.1 - Touch-Free but Still a Partnership 1991

_Editor's note: This section is an edited and abridged version of pp. 204-208 of_ Lucy's Story _, with a sentence added from pp. 271-2._

_Because_ Lucy's Story _ends only about six months after what Lucy describes here, some of her comments were "wise after the event". They will make more sense if you read them a little later._

_To visualise these scenes, check out the_ Picture Gallery _photos tagged "1991 Onwards"._

Most of these tactics were designed

\- to decrease Lucy's need for physical contact,

\- to increase concentration,

\- to encourage her to turn her head towards the keyboard and

\- to allow for problems that Lucy had in moving her right (typing) hand over to where an ordinary two handed typist would use the little finger of her left hand on the left side of a full-size keyboard.

**********

Since I had started typing on a typewriter (with my forearm resting on her hand), Jay had worked hard to encourage my hand to move spontaneously, in the same session swopping from holding my wrist to touching my shoulder, to stroking my arm rhythmically. As a rule the palm of her hand rested lightly below my right elbow, with her fingers tickling gently about five inches from my wrist.

She had never allowed me to hold her hand, except when I was very upset and she had to find out the problem in a hurry, or except when we both knew that I was being 'silly'.

Working with Pauline and Petra, ( _Appendix 4_ and _Appendix_ 5 and at home with Jay, I usually moved my hand, finger and wrist fluidly from a pivot provided by touch on my elbow that tightened (probably unconsciously) when my movement became perseverative, and which lightly signalled me when I should stop typing. Sitting with Grania in maths (see _Appendix 2_ and _Appendix 3_ ), I could point freehand at mathematical symbols, because they were part of an on-going exchange.

This was a different sensation from how I typed (freehand) on the little three-inch-square alphabetical keyboard of the 'M' model Canon when it was held in front of me. The Canon was narrower but I still had no idea of the exact instant in which my finger should depress the key. The Canon keys were smaller, so that the benefit of the smaller keyboard was discounted to some extent.

(My partner) was still indispensable in this kind of typing, because she would make me concentrate by pulling the Canon back from my reach every four or five key-strokes. This was not always obvious to the other party in the conversation, which sometimes gave the impression that I could have managed fine on my own. However no one could have missed Jay turning the little machine upside-down every now and again. I suppose I had given some involuntary signal that I was fixating on certain letters and combinations, probably because the stroke of my finger changed.

We had consciously developed this partnership, so that when I had to speak with our family doctor, or during the long counselling sessions with Nicky, all three of us would be reasonably comfortable that I was typing words that I chose myself, because my own hand was moving unsupported from letter to letter.

However on the standard size QWERTY keyboard I still needed touch, and I did not know why, though I suspected that part of the problem would be solved if Jay could hold it for me, as she did the Canon. This did work occasionally, if Jay had the strength to balance the light-weight plastic typewriter on her hand. However she had to draw it to my right if I attempted to reach into the uncharted area to the left of

E

D

C

As that end of the keyboard came towards my hand, I could recognise 'S' and 'W' and the rest of that little cluster for what they were. In the original position they were clear in my vision, but not part of my spelt language.

From late 1990 Jay had been drawing her hand further up as a matter of course, regularly making me tolerate her placing her hand on my upper arm, or right against my ribs when I used the typewriter or laptop. As a result the shot taken of me in April, 1991, was rather different. It shows Jay sitting to one side but behind me, holding my right shoulder while I typed for over an hour about _Hamlet._ She is occasionally pulling back on my shoulder, but otherwise there is no obvious interaction. I look as if I am completely self-absorbed.

In other sessions Jay deliberately moved her hand around on my back and shoulders, while my finger searched for sensible words on the keyboard of my laptop. She would lift her left hand from its grip just above my right shoulder socket, and, holding her arm in an arc so that it did not touch my back, hold my left shoulder.

Then she rested her hand on the bone at the base of my neck, and while I typed ran her fingers up and down my spine, or in great firm sweeps round and round the top half of my back.

And then Jay went back to an old trick from my childhood. She turned me towards her, pushed my arms up, and tickled me with gusto. As I started to giggle, she pushed me round to face the typewriter again, placed her hand in the middle of my back

(In late 1991), Jay bought an Apple Classic computer, because it had a keyboard short enough for her to lay along the flat of her forearm between elbow-fold and curled top-finger joint. ( _Editor's note: PC keyboards were much larger at that time_ ) I used it much as I did the four-inch Canon when she held it, relying less and less on my arm or body being touched.

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# 2.2 - San Diego to Seattle - Jay's Version Dec 1991-Jan 1992

**Lucy's version of these events are to be found in** _Lucy's Story,_ **Chapters 15-17.**

One day in early January 1992. Lucy and I ("Jay") went for a walk by the sea. Nothing new there! What was different was that we were in North America and had got to this coast via Los Angeles and a side trip to San Diego. A few years later this is how Lucy described the two of us that day.

"'You know, Lu,' Jay's voice lilted excitedly as we slid over the grassy bank which led to the stony beach. She was still wondering what on earth we were doing there, and trying to persuade herself that something was changing. 'You are moving quite differently.'

I (that is, Lucy) grinned. I had noticed this already. My body felt quite different, as if for the first time it had been tailored specifically for me. The ends of my fingers and toes felt real. The whole of my body made sense. Jay noticed my ankles flexing more when we walked along the beach. She asked me why, and all I could 'say' (on my Canon) was that I felt as if my feet belonged to me. I suppose to an observer it would seem that I no longer skittered loosely, nor stomped as if balanced on two strung tin cans."

Okay, what were we doing here? In the previous chapter Lucy and I were safely in Melbourne, Australia. Since then winter 1991 had taken place in its right-minded southern hemisphere slot of June through to August. Six months later in January 1992, not only should we have been swimming under brilliant sunshine in the sea off a sandy beach, but Lucy should also have been more interested in what her end-of-school exam mark might be and whether or not she would get an offer of a university place. (Yes, as she describes earlier in "The Chapter" she did pass and went on to university, so you are one ahead of us there - for us at that time this was unknown and very scary territory).

Anywhere, here we were walking on a pebbly beach in mid-winter with flat grey sea lapping at our feet. In front of us was Puget Sound off Seattle, USA, and behind us a row of comfortable Vashon Island seaside homes, in one of which a new friend, Michael McCarthy and his wife had just set up a practice in a still unproven therapy known as Auditory Integration Training. Six months previously we had met Mike in Melbourne. A developmental psychologist, at that time he was teaching young children with autism, and like Doug Biklen and Tony Attwood before him had been fascinated by the relatively functional language produced by Rosemary Crossley's clients.

_During his visit to Melbourne, Lucy and I spent time with him. Statements that Lucy had typed and that I had interpreted as being "poetic" made sense to him in the context of his work. For example, much later Lucy wrote,_ "I was so carried away by all this, that I suddenly expressed something that I had never described before. When I looked at an incandescent light globe, and spoke the word 'rainbow', I was saying exactly what I meant. I could see the whole colour spectrum in certain light conditions. For some strange reason, this silver-haired, low-voiced foreigner seemed almost as enchanted as I by this phenomenon."

_Mid-September Michael wrote to her from the States,_ _"If you are interested in going through Auditory Training, I would love to provide it. I would however like a small favour in return. If you do come here for Auditory Integration Training, would you consider keeping a journal of your reactions? I have found a comfortable bed-and-breakfast at a concessional rate if you come in January. If you decide to take the plunge, that is when my facility will be fully operational. Lucy, if you want to come here for auditory training, one way or the other, we will make it happen."_

Okay - ra-a-ight. That very week I had walked away from my job because Lucy was going to need a full time coordinator even if she did get some cover from the university for lectures and tutorials. We were planning to live on the proverbial "sniff of an oily rag" and half an hour before she opened the letter from Mike, I had given her a lecture on how we would only use the car for absolutely essential trips, and if it broke down we would have no car at all.

_Of course Lucy saw it quite differently. As she wrote,_ "No way could Jay say that a few car repairs were more important than this. I don't think I was in any doubt as to the outcome. I was going to America."

So why did I go along with this? In July we had been to Michael's presentation on "Berard Auditory Integration Training" and some weeks later to another session by a local practitioner of a related therapy created by a Dr. Tomatis from which the Berard protocol had developed. Both of these involved listening to recorded and modulated sound (usually music) with a view to changing the way the ear processed sound. Since this time there have been a number of other variations on the Tomatis method developed, and a web search will give you a good overview of them - and the fact that the jury is still out on whether any of them, and especially the Berard treatment, is "effective" in autism.

Anyway, after hearing Michael, Lucy started typing about her sensory differences. When I read some of her remarks and then watched her in various settings that winter, I had realised that her observations about the effect of some sounds on her own behaviours, and especially on her attempts at speech, probably were valid. She had made some comments over the past five years which had helped me to modify her environment and so reduce her distress and apparent behavioural problems. However this new "special interest" brought her use of typed language into a whole new dimension. Not only was she trying to explain to me why she thought certain things were happening but she also was attempting to put them into terms I could understand.

_From mid-1991 there is a different quality in the transcripts of her typing about sensory processing when compared with those exchanges relating to sensory discomfort earlier on. Instead of simply listing what she thought I should be aware of (usually preceded by the phrase,_ "you stupid woman! _"), Lucy was now noting that her own speech sounds probably reflected what she could hear. She was also recording that she had just realised this. I assume that for the first time she was beginning to understand that what happened inside her also was not immediately apparent to other people. So this topic was one which she was finding very motivating. Yay!_

From my point of view this made sitting next to Lucy while she typed a lot more attractive than when she was whinging on the keyboard about how hard her life was, and was worrying about what would happen when she left high school. This of course involved her biting her hand and occasional screaming. Yuk.

However Lucy's new enthusiasm had not made the theory of Auditory Integration Training any more plausible from my point of view. There was also one specific problem. Interest in this treatment as a therapy for autism had risen as a result of a best selling memoir by Annabel Stehli which recounted her daughter, Georgie's positive experiences after sessions with Dr. Berard in his French clinic. Reading this account, it was clear that Georgie's speech was a lot more accurate than Lucy's speech or her typed language. This was relevant because at that time it was believed that an accurate "threshold" audiogram was essential for a successful outcome. Lucy explains the concept of a threshold audiogram a little further down, so I can pass on that, thank goodness. Sufficient to say that, given the difficulties Lucy had - and still has - with passing on precise information relating to practical experiences, this probably was going to be an issue.

However in his letter, Michael had used the magic words, "would you consider keeping a journal of your reactions?" Now, Lucy has always preferred formal writing which she produced to be read by a third person such as a teacher. She becomes bored or obsessed with drawn out person-to-person communication about life experiences. So I had been concerned about how to motivate her to continue to type meaningfully during the long university vacations, etc. - presuming university enrolment became a reality. And here someone wanted her to type about something she thought was important!

_In_ Patchwork of Phrases _she refers to the holiday diary she had been asked to keep in September 1987. There you will have read_ , "Mrs. Wong set me the task of keeping a holiday diary. It was Jay's job to see that I wrote it. In doing so, she finally jettisoned the idea which I have heard people express, that writing about personal things was something that I should only do when I 'needed to'. I think she came to the conclusion that having language was a privilege which brought certain obligations. I had started off ungraciously, but after a few days developed a declamatory style that I thought was very appealing." (From _Lucy's Story_ p. 115).

This journal had been an extraordinarily successful device, not because Lucy wanted to record what was happening (to her back in 1987 it was a pointless activity), but because I was embarrassed enough by the situation to insist she do it every night and take it to school at regular intervals. I had learnt an enormous amount from her writing and this had helped me to work with the high school the following year.

As a rule I had been present during the events Lucy chronicled. However her throw-away lines relating to her motivation and the impact of the environment had been most informative - Remember, this was a fifteen year old who had only been using complex expressive language for six months and in late 1987 I still had a lot of catching up to do.

Michael was offering the cost of a ten day AIT programme in exchange for an on-going narrative. This meant Lucy not only would be writing about her experiences while being treated, but also about her day-by-day responses over several months after treatment. And she would be obligated to do so! For me this solved a major problem. So bang went the budget for the inevitable next big car bill - and a lot of other essentials - and in their place we bought two tickets to LAX, with six free nights stop over in California at hotels of our choice, and a connection to Seattle (and back).

We took some of those nights at a hotel by the harbour in San Diego, travelling down there by train from Los Angeles. Lucy not only waxed lyrical about Union Station in her book, but also incorporated it and the station at San Diego in an exercise on script writing she later produced as part of her university work.

_Apart from dealing with jet lag, the detour to San Diego was an opportunity to demonstrate Lucy's keyboard use to the late Dr. Bernard Rimland (founder of the Autism Research Institute - see_ http://www.autism.com _). We had a fun meeting and ate lunch with him, Lucy using a Canon in the same way she does in the photo with Tony Attwood in_ Meet the Author _. Over the years we kept in touch. In spite of outspoken criticism of some aspects of the introduction of "facilitated communication", Bernie retained an overall interest in the concept of people with autism using written language. At that time he was already in contact with people such as Margaret Eastman whose son, David, had used a similar strategy for many years before his death in 1987. David's father was a member of the Canadian diplomatic service, and they had met while the Eastmans were posted in California._

_Also at that time Bernie was investigating Berard AIT so at the end of 1992 we sent him Lucy's observations in "The Chapter" and later her detailed 45 page account in the final draft of_ Lucy's Story _. He wrote,_ _"When we met again in 1994, I observed changes which confirm her account of Auditory Integration Training. This account also is consistent with the reports of other more able autistic people. Although Lucy's experiences may be exceptional, her self-portrait of a person with autism is a treasury of information for parents and professionals."_ _(Personal Communication, 1999)_

So already meeting with Michael had brought about two very good things in relation to Lucy's use of "typing". Firstly she was starting to try to explain her experiences rather than to comment on what she assumed (often wrongly) I already knew \- or should know - about her sensory processing. Also she had now been able to demonstrate the process by which she could access a keyboard to someone involved in autism and who was interested in some aspects of the general concept.

And within a couple of days lots of other exciting things were going to happen.

**********

# 2.3 - Sensation to Word - Responding into a Vacuum Jan 1992

_(Editor's note: This section is reproduced unedited from_ Lucy's Story _pp. 237-239. We include it here because it addresses a number of reasons for Lucy's difficulties in pragmatic communication. Even if you have read it, you may like to revisit it in the context of Lucy's discussion of language in this book._

_Without our realising it at the time, this procedure may have been as successful as it was because it avoided the problems she mentions in_ 3.10 - Picturing Conversations _relating to_ "telling people things which happen outside my (Lucy's) body (which) is a chaotic, simply awkward approximation of nothing I (Lucy) can describe" _. At the same time Michael was able to validate her responses, both within this session, and at other times during our visit.)_

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To summarise the theory of Auditory Integration Training at that time, the filters on the equipment are set to train the ear to ignore those frequencies which are the most sensitive, as shown by the subject saying whether or not she hears faint tones delivered through enormous earphones. The audiogram is a chart on which these responses to almost imperceptible sounds are graphed.

The first step was this damn audiogram. We were all on tenterhooks to see how I would manage this. What use my typed responses would be in charting the faint tones of the upper reaches of my weird hearing, goodness only knew. This audiogram was to be a threshold audiogram. That is, rather than finding out whether the subject can hear in the normal range, the audiologist is discovering at what points he or she can hear outside the normal range.

This would not be like criticising a Shakespearian sonnet. It was to be the unbelievably incomprehensible and abstract task of transferring a sensation into a word-thought, and then removing it in time into either speech (which I could not do), or into a finger-thrust towards the "Y" key, which was as much a matter of luck as anything else — and he wanted me to "say" when I heard nothing! That was something no one had ever asked me, or, if they had, I had not made an accurate response, so it was unprecedented in my experience.

"Well," chirped Jay. "Here we go!"

Mike handed me a pair of earphones. I grabbed one of the string-like cords to take them from his hand.

"No-o!" he squawked, with the first crack I had seen in his professional exterior. I don't suppose he had thought that one of his first clients would rip his equipment asunder before she had heard a single tone. With a new tenderness, which I suspect was as much for his investment as for my skull, he settled them on each side of my head, and sat down opposite at a little console which pretty well hid his hands and wrists. I was still worried, because I suspected that I would pick up the flicker of his tensing and relaxing fingers in the shape changes of his upper arms. However I did not have to worry. The three of us were to have a pretty torrid time, but this was not going to be one of our problems.

There I was with earphones on, and Jay holding the Canon and not able to hear what I could hear. The first audiogram was terribly difficult, but then so were all subsequent ones! We found that working with my own typed language was closer to what the other two used their speech for than my own voiced words would have been. It had the potential to be accurate, but what pitfalls there were. Typing made me concentrate both on why I had to express what I heard, and on whether what I was expressing made sense to Jay, who relayed my answers to Mike in total ignorance of whether they were right or wrong. She had no more idea than I of what sounds and silences he was playing.

As the electronic tones peeped through, I started to respond. Mike's face at the console was no help, and he was craftier than me in the business of double bluff. I did not realise that the movement that his hand was making was not on the key which gave the tone. That key he had under his other hand in such a way that I could see neither his wrist nor any of his hand, and his arms seemed motionless under his sleeves, even to my normally cue-sensitive glance. This appallingly perceptive man was playing not only soft and loud sounds, but also spots of silence.

"YES," I brought myself to type as a faint tone whirred into my ear.

"NO," when he signalled that he had pressed the tone button, and I had heard nothing.

"YES," I typed, and "YES" again, though in my ear was nothing but the hollow sound of the cup of the earphone. Perseveration had come to the party!

He double-checked all my responses several times. Then he glared at me.

"What do you think you are doing, Lucy?"

Strangely that gave me confidence. Mercifully he had cottoned on to the fact that Jay's rather abrasive, tongue-in-the-cheek approach had resulted from my adolescent-autism-with-attitude response to all more conventional forms of encouragement. I became more verbose as, without being asked, I fell back on my experience in answering multiple-choice questions in Economics at High School. The way we had solved the perseveration problem then was to make me answer each question in a full sentence, giving a reason. So my forefinger started to chatter. This put more pressure on Jay to make Mike take time. She had also to insist that he wait, and not interpret my answer before it had run its course. For example, the expression, "NOT THAT LOUD, BUT CAN HEAR IT" had to be allowed to continue to the end if it were not to be translated as "NOT".

Essentially the whole thing was a microcosm of all the skills I had used over five years. The biggest hurdle was that I was responding into a vacuum. What a funny way of describing the problem that I have with answering questions without the reassurance that other people will not let me get it wrong! Someone who has used spoken or sign language all their lives might interpret that as my saying that I have so little confidence in my ability to be right, that this uncertainty was because of a need for emotional and empathetic support. That is not what I mean. It was to be yet another two years before it struck me what made this so difficult. In spite of sitting exams and school, and reading accounts of validity tests for augmentative communication users, I still had not instinctively grasped that only I knew whether or not I heard each tone or pulse as it sounded.

Of course Mike knew if I were answering inaccurately when I typed "YES" at a time when he was making a dummy move on the controls and there was no tone. However only I, Lucy, knew if the sounds which he did make got through to my consciousness, but Mike continually made my errors unimportant by checking and rechecking.

**********

So, what did Michael see? He eventually wrote a full report in July after we had spent more time together. You can find the second half in _2.8 - Feeling Sound, Seeing the Dark 1992_. Talking about the audiograms I have just described here is some of what he said,

Clinical history, audiometric evaluation and direct sampling of behaviour confirm both frequency specific hyper-acute response to sound, as well as difficulty in auditory processing of spoken language.

Test protocol included testing on all octave and half octave test points to threshold. All threshold values were subjected to test-retest format, with a minimum of three retest presentations. Blind false positives were randomly presented to ensure reliability. Examination times varied from two to three-and-a-half hours (!)

_Lucy presented a number of unexpected responses and demonstrated a number of anomalies. Lucy has numerous frequencies wherein there are two thresholds for sound. These frequencies amount to perceptual "holes" where no sound was registered._ (What that means is that I could sometimes hear a sound when it was soft, but when it was louder I didn't notice it at all. So that sometimes I didn't understand the same words when spoken by different people or when the same person was speaking more loudly or in a different tone of voice, even in the same conversation)

During the January assessment procedure, Lucy was asked to type a series of nonsense words to determine if these perceptual dead spots were having an impact on the registry of spoken language. Luc consistently deleted the final sound in any word that ended with a consonant, especially (but not only) if it were preceded by a vowel. This difficulty was not resolved during the January treatment.

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# 2.4 - Sidekick to a White Rat - What Jay Saw Jan-March 1992

**A detailed account of Lucy's experiences are in** _Lucy's Story_ **, Chapters 17-20**

After this audiogram, twice a day over ten days Lucy then spent half an hour listening to modulated music (or what she called "mutilated reggae") through headphones. She had two more audiograms and then we were ready to leave for Australia

**********

What was the result of all this? First of all, I'll talk about what did not happen in either the short or long term after Auditory Integration Training!

\- Lucy did not start speaking fluently or interactively, though she did lose some of her ritualistic nonsense verbalisations and some of her single spoken words were clearer.

\- She still needed supervision, though she did eventually become more competent in some ways.

\- She did not start to use her typed language pragmatically, though there was a change in how she expressed herself.

\- Lucy still put her hands to her ears sometimes.

\- She wasn't any easier to live with. One of the many long term plusses from AIT was better physical coordination. As a result I had to plan for confrontations more carefully. This was quite a problem because for a period of at least several months she was extremely anxious and prone to sudden outbursts of agitation. This was consistent with Annabel Stehli's observations of Georgie.

However almost immediately I saw for myself dozens of "good" changes". Many of these are important for what Lucy wants to explain in this book. For example these three were good starting points for what was to come.

\- You have already read that her gait changed, but her manual dexterity did as well.

\- On occasion she followed fairly detailed spoken instructions and sometimes she laughed at television programmes in appropriate spots.

\- Her eye contact was more "normal", and when she looked at something she appeared more attentive.

**********

_Later Lucy wrote about what Michael asked her as we flew out of Sea-Tac._ "'Don't forget to keep up the diary, Lu,' he said. I suppose he saw his laboratory rat whisking her long pink tail, and sailing off into the Pacific sunset with a skinful of unprocessed data. I (Lucy) thought he deserved a little bonus, so, after Jay had packed, I sat down at the computer, and launched into a 'thank you' letter.

"Dear Mike,

Auditory training has caused the world to become a different place, and that is very difficult to explain. The television program that I am listening to is not the same as it would have been. The screen is the main information, and the sound can direct my attention to the actual reality that they are trying to create. Before the commentary was interesting but parallel, as if they were not connected, but as if one had to refer to a footnote in one's mind."

. ( _Lucy's Story_ p. 247-248)

Great - now we knew the reason (or at least part of it) for why she was now laughing in appropriate places

**********

So once we got back to Australia, we faxed regular "diary" printouts to Mike. We went for a lot of long walks so Lucy had plenty of structured exercise. Sometimes she unexpectedly responded to a situation, sound or scenic view with an expression of surprise, pleasure or distress. Whenever it was possible I would get Lucy to "say" something on her Canon keyboard immediately, even if it was only very short. Often she produced quite a long strip of tape printed with rather incoherent words. This seemed to "sort out" her memory enough to prime the pump for a typing session later.

_Halfway through 1992 Lucy started to write "The Chapter" which looks at some of the changes she experienced, and then "matches them up" with what she remembered of herself as a child, observations of other people, discussion of her behaviour at High School and why she needs a partner to produce typed language. You have seen the "High School" section earlier in_ 1.5 - .Chapter and Verse _. "The Chapter" was introspective and fairly monotonous in tone, but things were about to change. This was partly because she developed new skills, but also because of changes resulting from AIT._

_About six weeks after we got back to Melbourne, Lucy began her university courses, which included some on the theory and practice of writing narrative. Two years later in 1994, and in the middle of writing an essay on an unrelated topic, Lucy launched into what seemed to me to be a totally irrelevant digression and (in spite of my grumbles) whipped out a structured narrative paragraph of about 200 words. When I read the printout of what she had typed, I realised she had begun writing her autobiography and taken as a starting point her experiences with Auditory Integration Training. These are the basics of that paragraph, later to be repositioned in Chapter 16 of_ Lucy's Story

"So the first frame of a slide show of our Grand Tour would have shown me on a Saturday morning in the centre of the City of Melbourne ... In my hand was the Canon, which I was pushing in Jay's direction. ... This unprecedented action was easily explicable if one glanced at the tape dangling from the keyboard: 'DARE I ASK TO GO TO SEE DR RIMLAND'"

**********

Over the next year Lucy then wrote a detailed description of about 24,000 words covering four months of her experiences from the time she wrote her Year 12 exams through to about two months after we got back from the States. She incorporated letters, printouts of Canon tapes, memories and some of her "diary" writings. In doing this she produced in herself a better understanding of who she is and what she had experienced as a child. Afterwards she went back and created the rest of the book, starting with her birth, giving a detailed description of being a child without speech and including how she began to use language.

From what Lucy typed, her immediate hearing changes after AIT involved

\- Reduced impact from some background noise, though many frequencies remained a problem.

\- Realisation that there were sounds she had not always heard but that are in the normal hearing range of others

\- Less sensitivity to some sounds which are too soft for most people to hear them

\- Appreciation that there were frequencies to which she was sensitive, even though most people are not aware of these

\- A better understanding of what other people were saying and how they were saying it (though in retrospect she realised that she still didn't decipher speech as the rest of us do)

Apart from what I had already observed, Lucy described tactile and proprioceptive changes which were consistent with how she now behaved. For example, she was slightly more tolerant of touch on her body and typed that now it was less painful. On her "good days" she started responding to other people slightly more interactively, and while typing even speculated in a rudimentary way on what they were thinking.

During some very fraught and difficult typing sessions she had emoted about the difficulties she was having, and through this came to realise that in her case this kind of distress, anger or confusion caused sensory discomfort of various kinds, though she had never realised it before. As these episodes often happened in the middle of the night, she was not the only person in distress!

One thing she has made clear is that she only really understood and remembered the before-and-after effect of all these changes because she used words to describe them, both at the time they occurred and later when she worked so hard to use new skills to try to bring them alive for the people she wanted to read her book.

Some of her observations are beautifully phrased, but (rather like Jaime's problems with Year 9 Mathematics), many of them leave me completely bewildered because I simply live in a different world. Here is an example - I am happy for Lu, but I simply cannot share what she experienced.

"The most wonderful thing had happened, though. I could not speak myself, but for the first time I now could understand what speech was. (I do not mean that I understood the content of speech better. That did happen, and was a consequence of the hearing changes.) The phenomenon of speech as a human attribute suddenly became explicable, in the way that swimming may make the phenomenon of gravity explicable." ( _Lucy's Story_ p. 244)

**********

On a more practical level, Lucy had also worked out that better depth perception, colour discrimination and ability to synchronise other people's speech sounds with their lip movements were reasons for her slightly more social response to people when they approached her.

In fact one way and another many of the "discoveries" she later described in detail related to visual processing. In various "conversations", and again in "The Chapter" Lucy identified depth perception as a problem in knowing when she was touching something, including a keyboard. However it was two years after the event, and only within the structure of creating narrative and imagining a reader, that Lucy was able to put the following paragraphs into coherent words for the information of someone else.

"It was also about this time (March 1992) that I (Lucy) suddenly registered in my own mind that it was easier to see and track my own finger movements when my arm was held. I was also more aware of exactly what point in time my finger was likely to touch the key of the computer. Here was part of the solution to why touch and typing had gone together. These days Jay only had to grasp my wrist when I was too distressed to type in any other way. For the first time I was consciously aware it was because at those times my visual processing was even more broken up than usual.

I learned this by comparing how I felt when I prodded the keyboard while someone held it for me in a 'good' session. I had changed so much in these two months that I was far removed from the rather fuzzy perception I had previously had of my hands. Though it was much better than before, for the first time I realised that my knowledge of my own touch was, and that it always had been, corrupted in relation to when my finger hit the key. No wonder I could only type in the company of someone who knew me very well. **Eureka!** ( _Lucy's Story_ p. 277)

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# 2.5 - Sensory Changes 1992 (Written 2002)

Adapted from "Reflections on Language" originally published in _Autism and the Myth of the Person Alone_ by Douglas Biklen _et al_.(2005)

Editor's note: This section and other extracts from this book give Lucy's views on some of the long term effects of changes which arose from Auditory Integration Training, both in terms of skills (or lack of them) and in how she gained better understanding of her differences. Lucy's comments about "now" obviously refer to 2002. You may like to compare them to what she has to say about herself ten years further on in sections written 2012-2013

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To work out a difference between an autistic understanding and what might be a more typical one, it helps to have a point of reference. Mine came in that year when I first underwent Auditory Integration Training (AIT) (this was in 1992 when I was 19). Which is not to say that AIT had a major effect for practical purposes, but that within a space of a very few weeks it gave me a glimpse of the differences from growing up with more ordinary responses. By coincidence, at that time I was regularly taken to visit my sister's children who were aged four, two, and about twelve months. "In their language exploration, manipulation of their parents, discovery of themselves and their furious tempers, I thought I could see what I might have been in a calm, coherent and stable world" ( _Lucy's Story_ p. 269). I drew on them and my own memories to write the first draft, in November 1992, of what eventually was published as _Lucy's Story_.

AIT in me created changes in balance and perception, so that I could compare what I had endured before with the rather improved environment I now experienced. It was this which I tried to bring out in my book. For example (I wrote):

"That was when I had realised that I did not always process information at the moment that my skin, balance, sight or hearing presented it to me, and that sometimes touch and sight were not in sync. Once again I learned this by comparing the Old and New Lucy ... No wonder I had psyched myself up by bouncing around. (In generalising this discovery, I had a great feeling of relief. I realised that sometimes I had not reached the bathroom in time simply because I had not known that my body was giving me a signal.) In hearing I realised that a temporal gap substituted for (the) difference between body movement and visual measurement ...

I had discovered a trigger for both my echolalia and why I threw up apparently nonsense words. So the way that I used speech was a reflection of what I gleaned from my hearing. This was only apparent to me because I was learning to accommodate to a new and slightly less distorted environment. However I had changed from one set of problems to a different version of the same. ( _Lucy's Story_ p. 278)

Some time after AIT, I wrote to Donna Williams (http://www.donnawilliams.net) in answer to a question she had asked,

"Auditory training has made some difference to my perception of sound and, though some changes were not massive, they allowed me to see some of the reasons for (problems with) both speech and initiation were completely sensory ...

"The nearly intolerable loudness of some sounds died and the queer blanks diminished as the time passed. However a break in the way I distinguish speech remains, though it changed enough for me to be aware of it. That makes me totally understand what the fluctuations in pitch and processing problems mean. However there is more (yet) to change than has changed as the shifts are very slight.

"The feeling that I have is that written language is real and spoken language a pit of misconception. AIT has cleared some of that up, but differences may be very slight as the reaction of each person (may be) less obvious than their internal comfort if that (i.e. the comfort) is augmented by changes in hearing.

"The anger reported in some people (during the period after AIT) may (as happened with me) be partly due to a physical response that lasted a few weeks, and partly due to a false hope in a major and immediate change in competence as there is a real change in perception of oneself and the world. (Correspondence, 18 November 1992)

It was this improvement in problem solving which led to my typing in this way, that is without touch.

In 1992 when I underwent Auditory Integration Training, there were a number of issues which arose out of AIT which are relevant. The first is that the practitioners who treated me asked me to keep a record. The thoughts that I wrote down for the first time were an account of my experiences which gave the "before and after" Lucy as a basis of comparison.

That is best illustrated by asking each reader to describe the cultural or emotional characteristics of their own sex, whether man or woman, without any reference to the opposite, not even by implication, as if you were completely unaware that there is another set of options available. If you are uncomfortable with this particular sort of difference, think instead of a kinship-based, preliterate society and an American academic meritocracy of the twenty first century, and compare the thought processes in either of a thirty-something woman asked to make a value judgement - that is not the moral basis, but the way in which the brain processes the decision. That is just an exercise in the kind of internal difference bound up in language processing - just an intellectual amusement aimed at "the rest of you", a reminder not to create meaning where none is meant. Autistic people aren't meant to find their therapists funny ... but guess what!

When I had first learned of auditory training I had hoped it would enable me to make speech sounds comprehensible to both myself and others. I had thought that if people understood each word I spoke individually, I could build on this to make full and conventional sentences. I had assumed that unclear consonants were my major problem, but now my reshuffling of the world briefly showed me possibilities of human life I had not dreamed. By this I mean that my entire environment had changed, and so I underwent a process of intellectual change as well.

I was beginning to realise that my understanding and processing of both spoken and visual language was far removed from that of other people. I was also beginning to wonder if this kind of thing resulted in part from how I had experienced my family in babyhood, distorted as that must have been by the discomfort of being embraced and the horrors of people looking at me or speaking to me.

That is because I had improved to some extent in how I processed other people's speech. Parallel to this I changed my understanding of what I should be hearing. So now I knew that words which were spoken to me should have far more impact on me, when in fact they still fluttered around fairly randomly. So I was more intolerant of other people's lost conversation, that is the way that people assumed I understood what they were addressing to me, especially if they looked at me in the face, which always makes me lose all auditory processing.

This made life very stressful. I could no longer simply sit and flap, or rock from foot to foot while being flooded with information in a kind of hit-and-miss manner, because now I automatically was starting to create coherent information from this sound maze. The sitting, flapping and rocking had made my body able to tolerate the flood of stimulation. However I can only do it when I feel well as I don't seem to have the coordination to process this comfort when I am ill.

I knew that I was not hearing some parts of voices other people found clear, and faces still occasionally decomposed, along with other focal points, and when that happened my embryonic understanding of what was happening could not prevent full terror sweeping in:

"I suspected I was even transposing some sounds from the moment at which they flowed from another person's lips. From my new way of looking at faces when all was quiet and calm, I had learnt that mouth movements should invariably synchronise with spoken words, but that was not always so for me, even with my improved sensation. The sight of someone trying to be friendly, chatting away with the relationship between the features slightly awry, speech noises a little blurred, and having no idea myself at what instant my own feeling of anxiety would transform itself into a full panic was not new. I simply had not realised that most people did not have this experience. Now I recognised that there was a reason for my confusion, and consequently for my terror." ( _Lucy's Story_ p. 276)

On those occasions that my real language processing problems in speech had been obvious even to me, I had assumed that the way I had not been able to make the words that others do in certain situations had been because of some lack of intelligence or a cognitive problem, because I could not see what I was doing wrong.

The old me (pre-AIT) had lived totally drowned in sound. I realised this because I now had a basis for comparison. However in most situations my family and friends saw little change. I became aware that my rudimentary attempts at speech were most effective in a quiet environment, not very useful in a room where there were two or more people, and very basic in such places as shopping centres, or in fact any of the places that one would be expected to go to meet with other people.

That made me realise that my vocalisations were responsive to sound input. I realised also that the spontaneity with which I started any action, my initiation, was progressively less under each of these conditions. I was distressed because this seemed to indicate that although I had changed a lot I was always going to seem very odd in the very places where I wanted to be accepted.

At home when we had no fans on, now my body was much more comfortable so I was more relaxed and alert, with fewer odd movements. However in other places, especially in busy environments with forced air-heating or cooling and other small motor noises such as (desk top) computers, I was often distressed, and my behaviour was rather erratic and even slightly threatening towards people whose speech I still found confusing to my new form of processing, even university lecturers! (See _Lucy's Story_ p. 275)

I had been so swamped in sound that I could not bring short-term memory and language together. (That also happened) in places like shopping malls. (In crowded restaurants)I reverted to asking for food that I associated with that kind of interaction, but this was less a request for what I really wanted to eat as a memory process. I had to make do with what I had pre-programmed, much as the way I would ask for a hamburger if I saw a McDonald's.

I learned this was involuntary the day we were standing on a pedestrian crossing in sight of the big gold M. We were talking about where we would have lunch, and I typed, "PLEASE DON'T LET ME MAKE YOU GO TO MCDONALD'S!" As I got to "the M word", my voice cut in and I declaimed "McDonal'!!" while physically tugging at my bewildered companion so forcibly that we ended through the sliding doors and in the line of surf-crazy youngsters almost before she was aware of it, and certainly before she could begin to analyse her own responses.

It was the first time I had seen clearly how often my obsession overcame what I really wanted to do. Previously I had believed it was just a matter of self control.

I often still make a statement by answering an unasked question. For example, something alarms me. I assume in my mind that my companion is my anchor. My mind creates an unspoken question from the other person.

"Is something worrying you?"

"Yes!" I should then say (but do not).

"Don't worry!" my imaginary mentor should have answered.

My mouth flaps suddenly in the first sound of this unspoken interchange.

"Don't worry!" This other person has spoken with my mouth, much to the confusion of whoever is standing beside me, and who has provided me with the puppet for this shadow play.

It is almost as if I am making an imaginary documentary. But then, as I said at the beginning, I see language as an interesting phenomenon which does not always relate to me in all my senses.

**********

# 2.6 - Explaining the Eureka moment 1992 (Written 2013)

When we got home from America back in January 1992, I learned that I had changed to a more typical way of processing depth. My colour discrimination was better. I relied a little less on peripheral vision.

These days I use occasional glances down in the middle of a few words when sitting at a keyboard, but since AIT, and to some extent before, basically my most effective typing-with-meaning is with peripheral vision from the bottom of my eye. Before AIT I used side-of-right-eye vision on the hand-held Canon. This got more centred after AIT

Now I could understand, and to some extent can make my mother aware of difficulties like being in an unconfined area, such as in a large outside space where ball-catching or even standing still is so difficult. As you can read in the second last paragraph of _2.7 - Speech and the New Me (1992 - 1999),_ "chaos still lurked in the wider world".

Also, although my eyes were processing things a little differently, my brain patterns seemed to be not much changed. That was why I could begin to see what some of my reasons were for the need for touch when I typed, and why I needed behavioural monitoring when I typed without being touched.

As I said a few pages back, **Eureka!** So now I know why I had felt language in my hand when Rosie first held me. Nothing woo-woo about it! I could make the whole lot integrate just enough to be helpful.

Although I can now move my hand on the keys without wrist or elbow support, and have done so for many years, "facilitation" in one form or another is still necessary if I am to use language. The most obvious reason for this is my vision (though certainly it is not the only one - that is one of the things that this book is all about).

However in most applications, particularly in complex social environments and where language relates to real life rather than when I am doing academic work or writing a passage like this, when I am using a full keyboard there is a need for some physical contact.

In the mean time, all I can say is, why don't other people really think more about how so many of us "typers" have eyes which are widely non-convergent, or rely on "peripheral vision"? I mean, don't just discourage people like me using this kind of vision, but think about really what it may do to brain function.

This is a characteristic of autism that is most widely observed. People like me often are said to use "peripheral vision". That is, even now I see more clearly out of the edges of my eyes than the centre. That is still so, though my eye direction is more like that of typical people than it was. Even before AIT in comparison with my contemporaries at a primary age centre for children with autism, I was described as having "good eye-contact". Later I wrote, "As a child, at least sometimes I appeared to be looking more or less in the direction of what I saw. Later I met children with autism who always avoided gazing. Their eyes seemed never to flick in the direction where they were expected to look. As a result I think I may have been less impaired than some of these, and that this may be why I acquired some simple self-help skills." ( _Lucy's Story_ , p. 29).

Over the years I must have met more than a hundred facilitation users. Some belong to groups where we type, and some I have visited in their schools, day placements or in their homes and have seen them use keyboards. Others I have not seen type but have met them in the company of people who have described them as using facilitation.

In all these different places, one can see the kind of movement I have to some extent. Among these are

\- finger movements to give focus

\- swaying that makes boring stuff into a magic slide show

\- being frightened to walk down stairs or slopes

\- odd head movements

\- difficulty in sitting still

\- and lots more, such as someone tapping furniture as he walks past it.

These are things that people working in the field of behavioural optometry describe as associated with visual differences.

Some of the "typers" I have seen have obvious differences in how they move their eyes or have identified eye problems. Others like me have subtle difficulties. Mine are related to problems with central focusing, depth perception, colour discrimination, convergence and bright light. I also have a subtle distortion (or I think it is subtle) from the other senses which might be related to synesthesia.

For whatever reason, when someone sees blurrily and has problems with depth perception, when their hand and (key)board are in front of their eyes, it is important that the facilitator makes adjustments to what she is doing so as to make the "typer" "choose" to access the keyboard or other device. Factors that help are

\- The partner moving, wiggling or occasionally briefly obscuring a low-tech device

\- Having a device with feedback which is meaningful to the "typer". (For me it is a screen, for others it may be voice-output)

\- Additionally making sure the colour of the device is compatible with the person's vision (I do better with a dark keyboard and find the bright yellow of some low-tech boards uncomfortable)

\- Making sure that surroundings, lights and ambient noise don't impact on the person's visual and auditory processing and

\- Of course the topic has to be rewarding enough to make the effort worthwhile

One thing that some people who have a lot of hand support sometimes do is hit keys far quicker than seems reasonable. This can happen both with people obviously using peripheral vision and also with those with the letter display in front of them. I have some idea why this happened with me and it may not be the same for everyone, so I will come back to it a little later.

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# 2.7 - Speech and the New Me (1992 - 1999)

Adapted from "Reflections on Language" originally published in _Autism and the Myth of the Person Alone_ by Douglas Biklen _et al_.(2005)

Editor's note: This section and other extracts from this book give Lucy's views on some of the long term effects of changes which arose from Auditory Integration Training, both in terms of skills (or lack of them) and in how she gained better understanding of her differences. Lucy's comments about "now" obviously refer to 2002. You may like to compare them to what she has to say about herself ten years further on in sections written 2012-2013

**********

Before AIT, when I tried to catch someone's attention spontaneously I usually said a descriptive word in the way most people would consider accurate only to ask for something.

For example, if the shower would only run cold, I would call out a single word (hot), without coming out of the cubicle to see if someone had heard. "Ho'!" in that situation was asking my companion to make the water warmer, not saying it was too hot. (Unsurprisingly, most of the time I did not get a satisfying response!). If the water ran too hot I might show my red skin to my mother, and say "dore" (sore) or "burn". For me a comment was always bound up with my own subjective experience rather than an accurate description of something that had happened for someone's interest.

As soon as I started AIT, I had suddenly had a shift in my language perspective. The second night after I had started sessions of tortured reggae, my mother looked up to see me nude and dripping, looking at her.

"HoT!"

In that moment she only registered that I had sounded the final "T". She came to turn on the hot tap, and found the whole bathroom billowing steam. It was only later when I read her notes that I pointed out that I had said that word in a different sense from before. I was describing something accurately for someone else's information!"

What I could not learn at nineteen, even though for the first time I could visualise it, was the requirement to describe the past, the non-meaningful and the invisible for the information of my partner, either in speech or typing. I am reconciled that this will never now happen. Language became explicable to me, but I did not burst into conversational speech. However (for a few weeks) I was just about bursting to speak, not just to say the items of words of items which I wanted, but to converse in a reciprocal sense. This wasn't a learned skill but something like a biological urge that had developed two decades too late. Even ten years later I look at someone, and find my sensible words expelled as a single grunt. If I try to make speech, my mind goes blank - literally. This is one example of what Donna Williams calls "mono", and awful, catastrophic cause of misunderstanding what autism is all about.

(At the time) this made me think anew about how I had grown to adulthood without speech, because to me this new impulse looked very much like the social urge that my one year old nephew, Aaron, had developed. Because he learned to smile and babble, he and his family tossed this back and forward in even the most unconscious encounter, so that I could see the building blocks of language in place before he had the words with which to cement them.

I decided that my strange combination of sensory misinformation had somehow scrambled this urge when I was a toddler because when all this stuff happened now that I was an adult, I had some very real physical reactions that made me wonder even more about which comes first, ability to do something or the slow building of that ability by experience. Suddenly over those few weeks in 1992 I found my tongue moving in my mouth in some kind of mobile, lashing motion with the normally bulbous tip pointed and cupped. Like my new gait and dexterity that were other side effects of these changes, this was a kind of interim effect. None of these made a lasting change in how I could interact with other people in a way that they understood, possibly because they were prerequisites for the skills I should have developed as a toddler.

When people had tried to make me enter into a conversation at school, or even at home, it had seemed to me to be for the amusement or pleasure of the other person. It usually was of no significance to me except as a game of the peekaboo variety. As I got older, I had learned to extract information from conversations between other people, but as soon as they turned to me all meaning went from what they were saying. So I would (and still do) make the answer that experience had taught me made the exchange worthwhile as a social activity.

For example most people talk to a comparatively speechless person with a face shaped into a smile of comprehension, even if the answer does not make sense! So in my case I smile and look pleasant and say "Yes", or echo. This may be quite the wrong response in terms of what I mean or want to say.

That is, the worthwhile social activity mentioned above takes place without, or rather at the expense of my being able to say what I mean.

On the other hand, if I speak the word "No", it is not the answer to the question, but may indicate that there is something very wrong with the whole situation. For example someone may ask a question.

"Do I need to go to the supermarket?"

"No!" I reply, because I wrongly believe the shops are closed, even though I know we have just run out of my favourite frozen popsicle. At that time I cannot change tracks to make an alternative suggestion either.

"Convenien' store," I will echo only if the other person had suggested this as an alternative, but otherwise I have no useful contribution to make. Meaning is bound up in what I think the (other) person wants to extract from my lips. I simply cannot negotiate by speech even now, though I do understand what is expected.

The non-handicapped person is really in a "no-win" situation, because what I always find, even today is that any second attempt I make at using speech or at a socially based task even when using typing, is accompanied by problems in interfacing different time senses. So if I start to try to make things clearer, it only makes me confused as well.

Timing is always a problem, but it is worse when there is any noise, such as water in an air conditioner or another person breathing or wearing perfume.

Donna Williams has talked about how she can only handle one task at a time. To make conversations is not to use language. Unbelievable to say, it is a complex interaction which involves about twenty tasks on the part of each participant. Some of these are the flicker and blinking of appropriate eye contact, control of breathing or stance. Then there is the content. Is one intending to bring one's own interests to the exchange, or just to reinforce the interest of the other? Watching the rest of the world I see them combining these two techniques in, I think, a spectrum of exchanges. Then one has light, noise and the unpleasant thought that one is sharing one's thoughts, and that in the head of the other party they will be slightly different.

Thought is easier however. To think intellectually one has to use words. Temple Grandin thinks in pictures. I have substituted printed words and phrases for pictures. That is, I see a label which is related to the item, intellectually or in memory. That relationship is not "rational" but sensory or some kind of sound- or time-shift which links with that printed image in my head.

Back in 1992 I was just working this out, and my diary shows I was only scratching the surface. I typed, "Very strange things start when I try to express anything in words whether spoken or typed without facilitation. The intention gets lost in a welter of unknown impulses that are likely to take over."

If I were asked a straightforward question like what did I want for lunch, which is a much simpler concept than "Do we need to go to the supermarket?' I was beginning to make pretty exact one-word answers. However often I had to admit failure, because my mother simply could not understand what I was saying.

I was also now making sudden spoken syllables to occasional words as I typed them. So we decided to try making me speak the words as I typed so that I could see the reason that I should make certain mouth movements. We had seen only too clearly from my counting and chanting in ball games that my speaking in imitation of the other person made things worse rather than better.

"Jay started to get me to use a couple of tennis balls to get me to focus on my left and right hands.

"The ball left her hand.

"'Catch-and-throw!' I chanted, in memory slotting into playing with Jenny and Kim. The ball flew from my hand vaguely into the quadrant where I knew Jay would retrieve it.

"'Do concentrate, Lu! You threw more accurately than that in PE at school.' She tossed it back at me, and my cupped hands gathered it to my chest.

"'Now,' said Jay. 'Think about what you are doing. Which is your right hand? Yeah ...?' sarcastically, as I put the left one up. 'Try again!'

"I fixed the word 'right' onto the hand I type with, and which I knew perfectly well was pronounced that way, and raised it. The ball by now had dropped to the floor. There had been no extra hand to hold it.

"'Right!' said Jay, confusing herself almost as much as me. 'Pick up the ball in your right hand,' nodding. 'That's right. Now throw — wait for me to finish! — throw to my left hand,' and she raised the hand opposite my own raised right hand. The ball flew vaguely towards it.

"'That's fantastic!' said my uncoordinated, sans-ball-skills parent. From her I accepted this as real praise, unlike how I had wrongly assumed that teachers had been talking condescendingly to me when I had shown confusion in chucking projectiles at school. Also I realised what an effort this was for her. She was not only disinterested in most sport, but visibly curled up inside when people produced even a beach ball at a barbecue.

"Ball to me — fine — then ball to her. Nothing new about this. Of course, I had heard people say how good this kind of thing is for co-ordination. What these well-intentioned, enthusiastic rationalists had never realised was that I had had no idea what co-ordination was. The fuzzy and overlapping limits to my body had seemed to have a life of their own. As the New Me reached for that virulently yellow-coloured, fluffy ball, I now saw why. I could see multiples of both fingers and palm as I stretched. In some way, probably because I was not fighting to maintain my place in space when I sat or stood, I was aware of this phenomenon consciously for the first time. Maybe also it was slightly improved. As I moved bits of me through space, I had slightly more understanding of what was happening, and my hands made movements that were in some ways more in sync with what I was trying to achieve.

"Jay's voice would snap.

"'To left!'

"'To right!'

"And occasionally I was told, 'Both together!' So strange to find my cupped hands not just wrapping round the ball, but my fingers starting to move, each as cooperative as a strand of sea-anemone.

"I also started to nominate which side the ball was to be aimed. The first time Jay looked clucky in a proud-mother kind of way, and the second she beamed like a Cheshire Cat, which she certainly did not resemble — more like Hobbes of Calvin and Hobbes fame, I would say, endlessly floating along in the trail of my enthusiasm.

"She was not very impressed though when my speech-urge lost all contact with the reality of the situation. Whatever improvements Auditory Integration Training had made to movement, hearing and behaviour, the Old Lucy pathways between speech, excitement, fear and obsessions had been so deeply planted that they were to sprout again and again at the slightest encouragement.

"The link between word and movement loosened.

"'Le, righ,' popped from my mouth in a chant. My catching was suddenly frantic, and drowned in the repetition rather than catching with any kind of focus on the task of concentrating on left and right when instructed to do so. Nevertheless, we went on doing this kind of thing, but Jay would cut me short whenever I started to spin out into my own world.

"I learnt to bounce balls with the hand that she nominated, and throw them into the air and catch with the same hand. However we found that I simply could not throw a ball from hand to hand, unless one of those hands was nearly the centre of how I saw my body. Even then letting go of the ball was terrifying. I would pass it from hand to hand unless Jay screamed encouragement and extravagant praise at me. I was not aware that I could not track the ball across the midline. When it moved into that area, it disappeared momentarily, and I think my visual memory had to reinvent it. That was not such a problem inside or in enclosed spaces, but chaos still lurked in the wider world." ( _Lucy's Story_ pp. 250-252)

We had got into the habit by now of my mother holding the board of the computer as a palette and with some eye contact between us. This made it easier to make typing into conversation practice. The collection of letters came from my finger and, as soon as Jay was sure of the exact word, she would speak it so if possible, I could model it orally before I had lifted my finger from the last letter. Over-optimistically I was determined that I could, and indeed had to, learn to match what I understood my spoken language to be to my typed language. For the first time I did hear my own full language from my own lips. However I never managed to follow through with more than one word at a time.

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# 2.8 - Feeling Sound, Seeing the Dark 1992

In the dark I float

In the dark I have body feeling

In the dark I fall down stairs

In the dark I have no thought of feet

In the dark I hear bats on leather wings, mammalian pterodactyls

In the dark the possum leaps

In the dark the dogs bark

In the dark I hear angels in the trumpets of my ears

In the dark I am safe from light which flashes across the brain like glass (2012)

**********

Of course this book is really about why I need help to think with a keyboard. That is a funny way to put it!

It is in this chapter that a few of the questions were answered for me. This is why I am sharing some of the information I took home from this trip.

Think about this! If one doesn't know where the bits of one's body have just been, and if one is uncertain about where each little surface area will end up, obviously there is a lifetime problem with cause-and-effect, with memory, and with hard-wiring the brain for narrative. So read this, and then think about what I learned from using my own typed language to discuss these experiences, because it is through language that we shape intelligence.

**********

What I had really wanted to do by the end of February 1992 was to tell the people who had suggested that partnered typing ('facilitation') was a load of rubbish what I had now discovered. However there were a few little problems.

One was that I could still not "pass messages" about things that I saw or which had occurred in my presence (which meant I could not pass "scientific" tests). This was even though I now understood in a vague way what was required, having learnt a bit more about how speech worked.

What I mean is that now, at the age of twenty, I became better informed when someone told me a fact I had not previously known. Sometimes conversation was not just a pleasant background noise or a theoretical discussion of other people's preoccupations. It could occasionally describe to me an event that I had not observed. However I still could not produce this effect myself in either typing or speech. The old feeling of my brain freewheeling was still dominant, particularly if the subject involved the concrete information of time, place, actions and objects so dearly valued by researchers in communication.

Also the nice feeling of the immediate after-effect of experiencing auditory integration training went away, and I became sound sensitive again, but in a different way to before. This was partly because now I had more interest in my surrounding. So for the first time I could understand what was causing discomfort or making visual processing break down. I now noticed that the way that I developed my movement towards the keys was in direct relationship to this discomfort. If there was a sudden loud noise, both Jay and I could see my hand shake. Real quiet contributed to clear touch. However we do not live in a quiet world. A fan, the refrigerator, a fluorescent light, coordination of breathing with blood flow, a car a mile away, or even anticipation, produced tremor. This was not muscular but because my vision blurred.

Before this I had not understood that this had always happened. After we came back to Australia at the end of January I had changed because now the body image and balance was better. So the effect of the environment was the same, but now I understood what sound did to me. However I thought that I had just become more sound-sensitive. At that time I did not realise that my brain was putting sound to different use.

Only by an audiogram could this be worked out. This was more easily said than done. At that time there were no therapists in Australia who offered threshold audiograms.

So that July we went back to Vashon. We scraped up a special air fair to Vancouver, Mike's wife, Marcie, who had now joined the practice, picked us up and drove us south to the US, and we stayed with Marcie and Mike in their home. Several things happened during this visit which helped me work out why I use language differently.

\- I told Mike about the "buzzing" noise which I often hear.

\- I began to understand that I have some sort of synesthesia.

\- Also Mike addressed what I had said about better depth perception and more understanding of colours in the diary entries I had made in January and February.

\- Equally importantly we now had some kind of proof that the way that I feel when I am not well changes how I process sound and how I see and move. (I describe this in _1.5 - Chapter and Verse_ , and again later in this book in 3.8 - _As the Colors Swirl 2011_.)

\- Finally - and for the first time - I was examined by a "behavioural optometrist" who was experienced in associating movement and behaviour with visual processing.

**********

Among other things, this optometrist wrote in his report, _"Lucy experiences a number of unusual visual disturbances. It is unclear which of these are caused by ocular (eye) problems, and which are the result of her unique perceptual problems._

"In my opinion her diplopia (double vision) is probably caused by persistent eidetic images, i.e. her brain holds an eidetic image longer than is normal so that images overlap temporally rather than spatially".

This explains why, in spite of better body image and balance, when I try to catch a ball, I still have problems with some hand movements. "The fuzzy and overlapping limits to my body had seemed to have a life of their own. As the New Me reached for that virulently yellow-coloured, fluffy ball, I now saw why. I could see multiples of both fingers and palm as I stretched (forward). In some way, probably because I was not fighting to maintain my place in space when I sat or stood, I was aware of this phenomenon consciously for the first time." ( _2.7 - Speech and the New Me (1992-1999)_ ).

**********

In his own report, Mike wrote,

During the June treatment, Lucy experienced varying degrees of tinnitus, which she described as "buzzing".

**He also talked about "Feeling" -** _During the June treatment, Lucy was able to describe the experience of tactile sensation associated both with certain frequencies and with certain volume levels. This was described as a separate sensory phenomenon from either hearing or sensing vibration directly in the external meatus (i.e. the tube running from the outer ear into the middle ear)_

There was considerable variation between the January and June audiograms (over and above the outcome of the January treatment).

_Lucy experiences a fairly regular cyclical viral infection (_ **which at that time was** _) on a roughly 34 to 36 day rotation. It would appear that the presence of this infection has significant affect on Lucy's hearing, since the greatest variations in her acoustic profile occurred during the peak of the infectious episode. Other anomalies such as the "pockets" of non-response also were exacerbated during this time. This did not appear to be a problem during the January treatment since Lucy was here for a comparatively short stay, and that had not included her period of vulnerability._

As stated above, during the June treatment period, Lucy began to describe the sensation of "feeling" associated with certain frequencies and volumes of sound. These sensations were described as tactile in nature, and seemed to be affected by the degree of viral influence.

The exact nature of this is not clear, but may be related to the possibility of synesthesia. Lucy has already given other indications of synesthesia in her descriptions of specific sounds producing both acoustic response and visual response in the form of flashes of colour.

After the January treatment, Lucy acquired visual depth perception for a period of approximately two months. One purpose of the second treatment was to determine if that particular gain could be recouped and made permanent. However results of the second (July 1992) treatment vis-a-vis depth perception and figure-ground separation were not encouraging.

Mike also wrote,

_Based on the work of Harold Levinson MD_ (see Wikipedia) _, administration of low doses of Meclizine (an anti-nausea medication) were attempted with rather surprising results. Per Lucy's reports (and behaviour) depth perception and figure-ground were restored to their post-January levels, in addition to the elimination of night terrors experienced when Lucy closed her eyes_ ( _confirmed by observation_ ).

Because of the effects of this medication I had a kind of "before and after" understanding. When I wrote "The Chapter" a few months later, I could talk about how things had been for me in the early stages of puberty, and I said, "The terror of the sensations I was getting when I went to bed was such a feature then (i.e. as a teenager) because of the sudden sensation of flashes and of falling just as sleep almost overcame me. I had always expected this sensation, and thought it normal. After all, people "fall asleep", don't they?"

Editor's note: Lucy continued to take Meclizine for about a year until she started to use tinted lenses. However, even when she discontinued the tablets, the night terrors and the sensation of falling did not reappear.

**********

The information contained in these two reports was helpful because it was clear now that a lot of the behaviour "problems" Lucy experienced, especially those which seemed to be without an immediate cause, were probably the result of complex sensory experiences. Also she began to realise there were probably good reasons for some of her other differences. For example, in "The Chapter" she also wrote, that in her teens,

"I also received less tickling and physical play as people felt it inappropriate due to my physical development. In retrospect I think that I needed that more than ever as I was starting to have rather unpleasant sensations that may have very likely been caused by allergy and food intolerance, as well as the other stresses of adolescence and my own undeniable worries. The whole confidence in my own balance went, especially in winter, and this was not addressed by the medication for depression

( _Here Lucy is referring to that July visit to Vashon Island four months earlier_ ) "Recently ... dreadful memories of that time came, but there were also difficulties that I easily remember from earlier. They were something that were always with me, but were more obvious when I was unwell. The way that I responded to fear - and lack of balance is a cause of fear - was to be only able to see the world that was the subject of my vision as a multiplicity of slides. These could either be side by side, or giving a spread of progressive images at one time.

"That occurred in good times when I could readily make access to such entertainment possible ( _by swaying, bouncing or jumping around_ ) but it would also strike in moments when I can remember panic and that helped to make me completely out of control. This year (1992) I was made aware that other people can hear or touch without a change in the depth of colour and a change in depth perception in sight processing, and not only was I unaware that there was such abnormality through my senses, but I had underestimated the impact of the intensity of direct enthusiasm on the basic volition of my activity.

"So if I am stimulated by touch ( _including being tickled_ ) or movement, these can sometimes make me more competent as, not only is vision more coherent, but the hues are slightly brighter. Now when I type there is slight carrying of more coherence in the image as I hit a keyboard. That is not the image that I see, but how I have a "feeling" that it is relevant." ( _From "The Chapter" November 1992_ )

I was only just starting to realise some of this. Five years and many hundreds of hours of partnered typing later I was able to write, "Now I can understand that ( _back in February 1987_ ), even with my newly coherent touch ( _resulting from physical contact_ ) I saw the air as a barrier between my fingertip and the key as I still do today to some extent - a barrier which could be slipped through when it was viewed obliquely. It is only when I copy meaninglessly that I see with crystal clarity the path my finger is to travel" ( _Lucy's Story_ p. 86)

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# 2.9 - Partnering a Partner, Touch or Not (1992 - 1999)

Adapted from "Reflections on Language" originally published in _Autism and the Myth of the Person Alone_ by Douglas Biklen _et al_.(2005)

Editor's note: This section and other extracts from this book give Lucy's views on some of the long term effects of changes which arose from Auditory Integration Training, both in terms of skills (or lack of them) and in how she gained better understanding of her differences. Lucy's comments about "now" obviously refer to 2002. You may like to compare them to what she has to say about herself ten years further on in sections written 2012-2013

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I have been asked whether it was that AIT itself had made some difference, or whether it was the task of reflecting on sound and language enabled me to focus on language and communication in a way I had not previously. I think that the notion of focusing is a teacher's concept. One can only focus on something one has learnt to see as relevant, and really I remain an observer rather than a participant.

In December, after AIT (and having completed "The Chapter"), Tony Attwood showed me an article by Teresa Joliffe in the December 1992 issue of _Communication_ , the journal of the National Autistic Society, UK. Not only had she written of similar differences, those of which I had just become aware, but even some of her phrasing was almost the same as mine. What a thrill!

I am aware as I type of (the) long-suffering parent-facilitator raising her eyebrows, now sandy grey on a summer-tanned Australian face. "The Hag" is my pet name for my mother, though in Lucy's Story I call her "Jay". I did not want my dependence to be seen as childish, but more of an adult-to-adult co-operation which it has become over the years. Well, the way that I compensate for my major problems is partly by mirror imaging. That may not be a familiar concept to non-autistic people who confuse it with dependence, and certainly it is not used by many with autism. However in the past I have seen others do so.

I think it is very irritating that a person with little vision or (with) mobility problems does receive acknowledgement that someone might have to do library searches (on their behalf). An ordinary student who has Asperger syndrome won't be forced to socialise. I depend on an accustomed companion for negotiating these (situations), but really I don't feel that I can go into detail. I find it really difficult to understand why other people are more interested in the process of what I produce than the content. I have sometimes felt that being a demo is not the point of my being a student, and really that this kind of discussion is more about wanting to be "normal" (which I don't) than about what I am achieving in terms of pure intellectual thought. After all, that is why I went to High School and university (to access the academic curriculum), not just to be with a whole lot of other people.

In making it possible to do assignments based on research, the person who supports me has to compensate for a number of factors, such as my inability to turn to a certain page, my intense distaste for rewriting and my terror if I have to search for a book on a library shelf. I simply read, then type, and later go through several drafts and dictate changes. I cannot word process at this level of complexity because, if I can't see my thoughts static on the screen, I lose all memory of them.

The issue is not one of emotional dependence. From my visual fluctuations and thinking about how they affect me now, I deduce that in childhood I had real problems in knowing exactly where my connectional limbs and trunk were, where they would move to next, and, even more frighteningly, where they had last been positioned. (For me) the solution is to make the other person part of my visual field.

For example, is the pedestrian in front of me, a hypothetical little old lady walking in the same direction as I am, too far away to mirror? My solution is to walk close to her. The miserable little grey haired woman is nervously looking over her shoulder. Then suddenly she scurries forward as I latch onto an arms-length distance on which to forge an invisible chain. As she moves, so do I because her body is now mine - that is until her movement is out of kilter with what I project as the future. In that event I float off, or if really terrified, in that I scream then bite my hand on the existing scar below my thumb.

If the little woman isn't already a speck on the horizon, you can bet she now has gushing jet vapour coming out of her sensible shoes. When I was younger I found this kind of reaction massively amusing, but as an adult I am irritated both with myself and with the non-autistic world, for I can't see why other people cannot understand that people with autism need the other partner in an interaction to do what my mother describes as "socialise for two".

If for example I see a doctor, I type my contribution on a keyboard. However all I am contributing is words and spaces. The other two people present have to produce the cotillion that is the structure of a medical consultation. That is, although I no longer am touched when I produce typed language, I still need a personal facilitator as well as the natural facilitation which is the job of the consultant.

That is not to say that I don't give the impression of interacting. I have been asked (by Professor Douglas Biklen, the editor of the book _Autism and the Myth of the Person Alone_ for which this was originally written):

"I've seen you be assertive in your conversations through typing. You pushed your point of view, took issue with mine, and seemed to engage in a _real give-and-take_ (emphasis by Lucy). Is that different from what a so-called typical person would do in a medical consultation situation? I do understand that you say you need the facilitator with you both to keep (you) typing and to negotiate everyday events like walking to a particular location, but are your words really just words and spaces? One person who communicates by typing and also by speaking slowly (syllable by syllable and word by word) told me that the facilitator helps him have the right environment for communicating. Does it work that way for you?"

However for me it is almost like my being an angel sitting on my own shoulder. I can see myself in this interchange (with the doctor). If it goes on too long I have no interest in it as a social occasion. I really am more interested in why I am typing than the opinion I am trying to express. In fact it isn't a "give-and-take". I am able to understand that gavotte when I observe it in others, but I would rather read a paragraph and comment.

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I still cannot operate effectively in language or independent movement in the community without someone who is involved in most aspects of my life. That is, not only do I behave oddly and not interact when people need me to create a bridge so they can behave in an appropriate way to me, but also if there is not absolute certainty nor a lack of ambient sound, I can't sequence. So places like supermarkets or even the street require a one-on-one companion.

I still have sudden changes in obsession and avoidance which assert themselves at the most inconvenient moments. For example, in the middle of doing an assignment which was worth a full semester's work for a postgraduate course, I suddenly had an irresistible compulsion to replace every noun with the phrase "that word", and every proper noun had to be struck out as soon as it was typed. As this assignment was already late due to cyclic immune problems, this is an autism issue which happens to spill into language, whether typed or spoken. That is, illness may appear as "behaviour", which makes any kind of achievement so difficult. That is one for the linguists. (Of course, ASD (Autistic Spectrum Disorder) is a biological condition - can't help a little missionary work here.) ( _Editor's note: For more on this "cycle" see 3.8 -_ As the Colors Swirl 2011).

My dreadful fluctuating visual processing is a side effect of this unrecognised illness which I believe to be part of my autism. Although we have caught many of the worst aspects through vitamins, etc., the fluctuations in personality and performance will always be there. That is why physical "facilitation" is so useful, and I am often deeply sorry that in changing how I have made use of a keyboard, I can no longer use it (physical facilitation, that is). Long ago I thought this through, and I now believe that continuing touch which does not interfere with output is both therapeutic and also a help with creating a bond within the partner. After all it is very difficult for ordinary people to interact normally with us.

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# 2.10 - The Beam of My Eye (Written 2011)

As I said before in 2.6 - _Explaining the Eureka moment 1992_ , although I can now move my hand on the keys without wrist or elbow support, and have done so for many years, if I am to use language "facilitation" in one form or another is still necessary, even if it doesn't involve my being touched.

I also said that the most obvious reason for this is my vision. This is because I now realise that I can't look at the keys and see my fingertip as most people would. Instead I "see" my hand in my head, and re-create the keyboard in the same perspective. It is difficult to conceptualise words when I stare fixedly at the combination of my hand and board in real-time-dimension. My hand is also blurred.

The blurred effect is in my vision, but it is also in my brain. I should explain it is as if my hand changes shape and perspective constantly. I am probably one of the few people who decode Dali as a realist (That Is A Joke) and the effects in _The Matrix_ as literal (Another Joke!)

I know that this is not only something to do with my eyes but also my brain as a few years later when I used some configurations of prismatic lenses the effect was less, but it was not gone so there must be another factor at work. Also unfortunately using prismatic lenses in this way removed meaning from words as I typed them! I will come to this later.

I first started to work this out on Vashon Island in January 1992 when I noticed my body image had changed. Later I realised my visual processing was different from previously in a number of ways. So in the first draft of "The Chapter" I wrote that when I was a child "the difference in inversable and tunnelled appearance of people and small actual spaces achingly was horrifically pleasurable". In _Lucy's Story_ (p. 26) I also added that the way that I could perceive people was slightly distorted, not in shape but in the composition of their components in my visual imagination.

So you can understand that, if I could have done so back when I started "typing" in 1987, I would have chosen to use the simple Canon keyboard with someone touching my hand but without the Canon necessarily being in my field of vision. However this only happened when I was very unwell and so was giddy and nauseous, and so kept my head under the blankets. That is, if my mother could see that I was not able to cope with sitting up, she held my wrist in one hand so the Canon was close to my fingers but my hand could flex by itself. So once my brain had processed the actual "box" within which my hand would move, I could make simple phrases.

Of course usually I was not allowed to use a keyboard without looking towards it. That does not mean that I looked at it directly when my arm was not supported, even though I seemed to. I glanced at the keys, and poked from the end of my extended arm. (See photo in _Meet the Author_ "1990 with Tony Attwood".) So I was seeing it as a kind of "box" anyway, because I could blur my vision at that distance. Alternatively my "facilitator" held the Canon a bit nearer ( _Picture Gallery_ "1990 Using Canon in Meeting"), and moved or wriggled it after every few letters that I typed. As a result my eyes re-focussed every time this happened.

As I have said, my "facilitator" might hold the Canon and move or wriggle it every word or so. As a result my eyes re-focused each time this happened. Later from about 1993 onwards, when I was trying to use a larger keyboard, she would move it slightly while I typed, or place it on a water-filled hot water bottle so it was shaky. We also deliberately used a light weight bent coat hanger bent into a kind of stand which quivers each time I hit a key. We still use this sometimes and find it better than a properly designed stand!

And as I have also said, one thing that some people who have a lot of hand support sometimes do is hit keys far quicker than seems reasonable. I have the impression that these "typers" also have a visual processing difference that involves seeing still images in rapid sequence rather like I do, so that if they don't finalise the decision of which key or letter to strike, they can't act on a longer term plan.

In my personal experience, very fast typing can be countered to some extent by my partner insisting that I balance (for example stand on a balance board) or by her providing a rocking motion or by her creating the characteristics of spinning, tickling or other excitement. This may be peculiar to people who like me have characteristics associated particularly with autism. However someone being non-autistic doesn't mean that this may not exist in other people.

_2.1 - Touch-Free but Still a Partnership 1991_ describes the practical aspect of my using the Canon without physical contact as a prelude to using a full size keyboard without being touched. The full text of that description drawn from Chapter 14 of _Lucy's Story_ is a bit longer. It reads,

"(Back in 1991, if I used a standard QUERTY keyboard) it was a different sensation from how I typed on the little three-inch-square alphabetical keyboard of the 'M' model Canon when it was held in front of me. Because the Canon was narrower, there were fewer ... booby-traps, but I still had no idea of the exact instant in which my finger should depress the key. The Canon keys were smaller, so that the benefit of the smaller keyboard was discounted to some extent. Nor was the keyboard as clear when the Canon rested on a table, without my knowing why. Unless it wavered spasmodically, and my partner closed the minuscule gap when my finger did find the key, I was frozen in a small, panicky instant of immobility, or once again was lured by a letter which flashed at me from my internal fantasy.

"However, after years of practice, Jay no longer had to move the little keyboard to meet my reaching finger when I ear-bashed people like Nicky and Tony Attwood. She was still indispensable in this kind of typing, because she would make me concentrate by pulling the Canon back from my reach every four or five key-strokes. This was not always obvious to the other party in the conversation, which sometimes gave the impression that I could have managed fine on my own. However no one could have missed Jay turning the little machine upside-down every now and again. I suppose I had given some involuntary signal that I was fixating on certain letters and combinations, probably because the stroke of my finger changed. When the Canon was turned over, the keys abruptly vanished, and the sudden tunnel through which I had started to make a swooping, homing motion decomposed. When the keyboard was turned up again, I was back to the usual slight confusion. So I needed my companion's help to focus my attention and know what I was saying, but I was no longer in thrall to the wizardry of enchanted letters."

( _Editor's note: As you have seen in my notes to that section, back in 1991 I realised that Lucy's problem in moving her hand to the left of the larger keyboard was related to movement, but I had not connected this to difficulties in crossing the mid-line and other visual issues. After observing Lucy, Michael McCarthy suggested a number of strategies for investigating this, of which the ball-throwing exercise in_ 2.7 - Speech and the New Me (1992-1999) _was one. This exercise was of limited use in terms of remediating these problems, but like many of her comments on the after-effects of Auditory Integration Training, Lucy's diary entries were illuminating and helped us to problem-solve later. In other words, our trying things and then Lucy saying why she thought they were not successful was as useful as when things went right.)_

Now I understand that back when I started using a keyboard, the main thing touch did was to make my eyes beam on my hand. That is comparable to the static position of a lamp shedding a beam on the surface you want to see. When I first typed that early this year, I suddenly added, "What have I just said? Whoops!" All at once I realised that this is not just a picturesque expression, but a real WOW moment for me.

This is because over a year ago when I wrote my first draft of the section of this book called _1.4 - Hands, Knees and Wriggly Brain_ , the sentence which starts "Now, when I see Rosie and other people supporting clients with Cerebral Palsy as they access various communication devices..." read rather differently. Originally I had used an image which seemed to me to illustrate the coactive nature of "facilitation". That first version read,

"Now, when I see Rosie and other people supporting clients with Cerebral Palsy as they access various communication devices, I am reminded of the various designs and configurations of "Anglepoise®" brand lamps. In this invention, first developed in the 1920s, the basic idea is of two parallel arms which support each other. Different configurations are designed for different kinds of lighting. They are regulated by a spring and the spring is rigid once it has been set in the way the owner wants the light beam to go. That is a completely static model for an interactive motion, but it does express the idea that with someone with the kind of difficulties that Rosie worked with, the first concern was to place the arm in a position where the person's hand could reach the letters on a communication device."

But now that I have written down that being touched helps me look at my hand with meaning, I realise that, not only does the rigid lamp make the distance to the target consistent, which is different from the way a swinging lantern would work, but for some reason the angle directs the "sight". That is, I realised that this "beam" from my eyes is rather like a lamp which is focused by position as much as by aperture.

Before I leave this section, I need to explain there is a difference between what I mean by the words "beam" and "focus". "Beaming is a more space-drawing, which is rather like making-the-shape-within-which-I-move. (This is not the same as a shape around a movement, i.e. outlining a space within which I move.) (See _Lucy's Story_ Ch. 2 and also in this book 3.8 - _As the Colors Swirl 2011_ )

"Focus" is pinning on the pointing finger, and that is what my eyes do. However my brain is not quite developed properly that way either. That is interesting - until I typed that, I had not thought about this at all.

**That is what was behind the Eureka moment**!

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# 2.11 - Exchanging Views, Sharing Information 1993

In _2.3 - Sensation to Word - Responding into a Vacuum Jan 1992_ you read about how I gave the equivalent of accurate "Yes-No" responses to whether or not I had heard a single tone even when my facilitator did not know what sound was playing. Now we had to tackle a different problem. In this exchange I and my "facilitator" both knew what I was looking at, but I had to describe how using certain lenses might change depth perception, body image, how I saw print and other things.

Chapter Two of _Lucy's Story_ is called "Little Lucy - Visions and Voids". It outlines differences in my visual processing as a child, though I only became aware of these when I was a grown-up. In the last paragraphs I say, "(My) personal world-reality and the-world-as-processed-by-the-eyes are continually confused ... I was an adult before I could explain to anyone the dreadful instability of a scene that could sparkle one minute, and simultaneously have some components of a pastel haze." ( _Lucy's Story_ p. 33).

_Lucy is talking about what she learnt from using Irlen tinted lenses These lenses are tinted in a number of overlaid colours and are designed to filter out white light in people who have reading problems. (_http://www.irlen.com _) About this time they started to be used by people who had autism. We were already in contact with Donna Williams (See_ 2.5 - Sensory Changes 1992). _Donna had sent Lucy a description of her first impressions when using these lenses. These seemed very like Lucy's experience immediately after Auditory Integration Training. In_ Lucy's Story _(p. 250) she says,_

Then (in late January 1992 after flying back to Australia from America) I was at home in our little house ... the Bay showing briefly in the V between the trees in front. But to me it was not the same Bay. For one thing it was bluer, and the trees greener in the way that coloured slides are more intense than photographs. Reality was no longer at a distance. When I stretched out my hand, it seemed to arrive at the expected point at the same instant that I saw it do so. The depth through which I saw my hand reach to rest on an object was reassuringly close to what touch assured me was actuality.

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When testing for Irlen lenses, the client holds round, unframed lenses one in each hand up against her eyes while she looks at printed pages and other material and tells the practitioner what she sees. The practitioner then adds (or substitutes) additional layers of coloured lenses to be held by the client, who once again describes the effect on how the print or patterns now appear to her.

There are technologies which involve the client looking into equipment which displays the colours. However the practitioner still depends on subjective but accurate feedback from the person on whom the tests are performed at the same time the colours are displayed.

_One advantage of the lower-tech approach involving placing plastic lenses in front of the person's eyes, is that an experienced tester can see if the reader's eye movements are consistent with the reported effect. However there is no opportunity for "double bluff" on the part of the practitioner in the way that Michael did with the audiogram earlier in this book in_ 2.3 - Sensation to Word - Responding into a Vacuum Jan 1992 _because of course she or he can't control exactly what the client sees. whereas an audiologist can control whether or not a tone is being played._

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Most of this section is based on notes I made in late 1993. At that time the Irlen Clinic in Melbourne was operated by Sister Judith McGowan, who had told me she had no previous experience with autism so I explained:-

\- That autistic people may have atypical responses to any form of questioning

\- That even with "facilitation" Lucy's answers might be idiosyncratic

\- That her response to stimuli and to her own emotions was often disconcerting for other people (a little understatement there!)

\- That if the assessment were to have any hope of success I would have to be closely involved

\- That I would have to sit permanently on Lucy's right, which is the position usually occupied by an optometrist or anyone else doing vision tests

\- That I realised we would probably need more appointments than usual.

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In spite of background noise from outside which penetrated the practice offices and which Lucy found very uncomfortable, we did get some preliminary feedback. Sister Judith offered stiff, page size plastic coloured sheets for Lucy to look through at words and diagrams, and asked questions. I monitored Lucy's behaviour and movements. I also "encouraged" her to persevere at difficult moments while acting as a kind of interpreter. Lucy's comments relating to obsessions and excitement were strongest when looking through red and yellow sheets.

_For example using the Canon she typed_ THE RED ONE IS MAKING IT SIGNIFICANT _._

_Then she typed the words,_ MARS BAR _, which was something she often says when excited or upset._

After checking with Lucy, I had to explain to Sister Judith that this was not a reference to the colour of the wrapper,

Lucy was "saying" to me through "typing" that she linked the general "feeling" from this colour with the kind of experience which usually led her to verbalise the words "Mars Bar" at moments of high drama.

That is her typed words did not refer to what she was seeing. This was a "shorthand" description of a pictorial symbol for one of Lucy's own behaviours, and for my information. It was as if she were saying "This is the kind of "feeling I have when I chant 'Mars Bar'" - and by in my experience possibly biting her hand, jumping up and down in the early stages of a tantrum together with other nasties!

Obviously red was a tint to avoid, at any rate as a base colour!

_Purple for some reason she found_ TERRIFYING _. Orange resulted in her typing_ ACTUALLY WOULD SELL MY SOUL - BEASTLY OBSESSION _._

_With the blue sheets she typed that the shapes at which she was looking were_ IN ONE BLOCK AND IN PERSPECTIVE _as well as_ MORE CONTINUOUS IN THE SENSE IT GETS LESS VIBRANT _. Lucy also typed that the grey sheet made her feel_ EMOTIONALLY VERY NEUTRAL.

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We took home some of the coloured plastic sheets. I rigged up a frame hanging off the front brim of an old hat to which we could attach each sheet as required, rather like a welding mask. So Lucy could move her hand on the keyboard while looking at them through the coloured plastic while I watched to see whether there was any difference in how she touched the letters. This was great because she could give me simultaneous feedback.

I wrote a description of how Lucy and I interacted while using the plastic sheets. Among other things, I said, "Apart from reading, she has typed while looking at her own hand through each sheet. I got her to comment on depth perception and to look at a familiar photo, at people on television and at me."

_Lucy and I know that panic and problems with food are sometimes triggered by some kind of visual thing. (Lucy had talked about this in the original version of "The Chapter", and she developed it in Chapter 2 of_ Lucy's Story _.) So I asked her to look at photographs of food through the sheets_

I got feedback not only from her more conventional responses, but by drawing on my own experience with Lucy and "discussions" we had previously had about her behaviours. I know that her showing discomfort and drawing away from either the task or from contact with her "facilitator" is not necessarily a negative response.

I have noticed it in Lucy on other occasions and also in other people if they are asked to type without prior warning or when a keyboard is just thrust at them. Lucy has made very similar noises and movements when unsure about her balance, when on a high bridge, during undergoing AIT and so on. (This is similar to Lucy's reaction to Doug Biklen approaching her face to face and wanting to shake her hand. She has real problems when someone tries to interact with her face to face).

So if she types a positive statement but seems to show distress at the same time, I know that it may be because of surprise at her own emotions or discomfort caused by what she is experiencing. It may not relate to what she is trying to type. On this occasion I assumed that the cause was whatever it is she was seeing through the coloured sheet. For example I was surprised at the strength of her reaction at her own drawings of people when viewed through the blue sheet as compared with other colours. Then when I read her comments about people and her drawing, (below) it is obvious that this difference is more 'normal' (in our sense of the word), when compared with her usual visual processing.

_Over several days of typing about this for a few minutes at a time, the best colour was blue. Of that Lucy typed,_ "This is the best I have seen my hand" _. On looking out of a window at our garden she added,_ "Really the feeling is that I am not so separate - silly! - but the outside is further away - so not so flat" _._

_When I asked Lucy to look at her own drawings of people (_ Appendix 1 - Picture Gallery _1993) she got extremely agitated and pulled back. Referring to these drawings, she typed,_ "That no longer means what it previously did. That is observably not a normal message". _From her behaviour and from this comment I realised that what she was seeing now was not what she had "seen" when she made the drawing._

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The second appointment, which is when the lenses were chosen, took place in a large, very quiet room in the grounds of the Sacre Coeur Convent where Sister Judith lived. The layout of the practitioner's table was ideal for Lucy. I wrote, "Lucy sat at a wide desk facing the window (with a view of a garden and trees) and I sat on her right. The case with lenses slotted in order was open and in front of Lucy to her left, and on the right was a white cloth on which each lens was laid in order as it was used and after Lucy had commented on it. Because of this she was not confused and the sequence of events was very clear."

We held the lenses up to Lucy's eyes for her and used the information from working with the coloured sheets at home both to create a conversation and to monitor her responses. The first session was to choose the "base colour" - as expected it was a blue - and after a break there was a second session to fine tune two additional tints.

These are very brief examples from the three pages I transcribed from her Canon tapes.

_\- (Blue)_ REALLY MORE NOT FRAGMENTED

_\- (A lighter blue)_ MORE CLARITY BUT FLATTER SO NOT RIGHT

_\- (Original blue)_ MAKE ME COMMENT EASILY ON DEPTH OF FACE AND COMPLETE TREES

_\- (We followed her instructions)_ THE TREES IN THE WIND ARE TERRIFYING AND SO THAT IS LOSING THE EFFECT WITH BLUE _(She confirmed that she meant they were now less terrifying)_

_\- (After the break Lucy walked outside holding additional tints)_ THE TREES ARE STEADY AND THE ROSES MORE LIKE A PICTURE AND YOUR FACE IS A WHOLE.

I finished my notes by saying, "This examination would not have been productive if Lucy and I had not been allowed to conduct a dialogue between us, and if I had not been able to say what I thought was going on so that Lucy could then confirm whether I was on the right track or contradict me. As usual her body language was not useful, and on occasion was very misleading.

"Whether or not Lucy could have participated as usefully two years ago (i.e. 1991) I am not sure. She might have been so startled and confused by the differences made by the lenses but without understanding the implications that her feedback might not have been as critical and perceptive"

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Would this approach have worked with another "facilitator"? In Lucy's case the answer is both "yes", with the right person, and "no" if there had not been common ground.

_Grania or Pauline had been able to have similar exchanges with Lucy in relation to her behaviour at school because they had learnt to identify triggers and also situations with which she was comfortable, and they knew the context. Teachers had worked directly with Lucy in terms of academic content and been aware of the role of the aide as a member of the team. The fictional teacher (a bit of a caricature too!) in_ Appendix 4 _"School Scenarios - Mapping the Classroom with Pauline (Sue) 1989_ " _deliberately draws attention to a breakdown in this process!_

_So the Irlen exchanges were conversations involving common ground. I had been in Lucy's company while she experienced the sensory shifts following AIT. The third party (Sister Judith) was practised in administering the tests. It was a dialogue in which we built up a common understanding in the same way that Lucy needed someone who enjoyed mathematics to work with her at school (_ Appendix 3 _)._

_Nearly two years before in 1992 Lucy and I had learned that visual processing could be changed, and that it impacted on how she "felt". Together we had read Donna Williams account of Donna's own experience with coloured lenses. Also we had corresponded about testing protocols with Sandra Attfield, the mother of Richard Attfield, an English poet who later was to be one of the co-authors of_ Autism and the Myth of the Person Alone _which is mentioned in the Introduction to this collection of writing. Richard uses similar lenses because he has a very severe sensitivity to white light. So to some extent Lucy knew what kind of information would be useful, and did her best to help me understand what she was experiencing._

Our brain storming how to work with Sister Judith McGowan, our discussing these tests together and using various tints in typing, in combination with attempts at vision therapy certainly made both of us think more clearly about the role of touch in Lucy's keyboard access as well as how she processes written language. This is why we have worked on trying to modify and understand her need for "facilitation" while reducing hands on contact, rather than "fading support" as if using a keyboard were purely a physical skill.

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# 2.12 - So Much World, So Little Time 1994-1996

As you have read in _2.2 \- San Diego to Seattle - Jay's Version Dec 1991-Jan 1992_ Dr Bernard Rimland had written, _"In 1992, I observed Lucy typing on her own. Since then she has clearly come a long way in communicating effectively and convincingly. When we met again in 1994, I observed changes which confirm her account of Auditory Integration Training. This account is consistent with the reports of other more able autistic people"_.

Yes, in 1994 we had been back in North America and before we flew home we went to Canada and spent time with Sally Borthwick and the people with whom she worked in Ottawa. (see _1.9 - Beamed Down from Syracuse - A Pen Picture of Me 1989._ ) Her students in the Autism Units at Featherstone Primary School and McArthur High School were using "Facilitated Communication" in regular classes. ( _The High School students were also using old manual typewriters in the unit with support on their typing arm, which seemed to work very well with these strong young men._ )

Then in April 1995 I had written to Sally, "More than ever I am sure that typing with touch, or some other kind of compensation, is bound up with hearing, balance, sight (especially) and skin sensation. I also think that the need for control and feedback is due at least in part to language streams in my early childhood not being exercised, so I "sound" ( _i.e. if someone reads my words aloud_ ) as if I am using typed language, conventional or otherwise as others do, but really it is quite different so that I am manipulating something visual from another process. That is why I do not easily type of concrete things and tests are not productive.

However unbelievably, physically I am a step closer to fluent "independent" typing, which is why I am beginning to wonder about the language component and my problems with self-monitoring."

**********

Then came my big memory of 1996, my "Grand Tour". So much world, so little time! We were due to appear with Mike at his presentation to the Autism Society of America Annual Conference in Milwaukee, to back him up with video of me typing without physical contact, and with information about how I had learnt about myself from changes in my sensory system. Mum ("Jay") also decided this was the time to revisit her homeland, England, for the first time in thirty five years. So the trip was hectic.

We decided to go to Milwaukee via San Francisco for a stop-over to get rid of jet lag and for my obsessive mother to make me walk off my anxieties. From our hotel in San Francisco we could walk to China Town and catch a tram to the waterfront. That was fun! It actually was like being in a movie - the steep road that Babra Streisand made world famous is a real place! The wharfs of San Francisco, developed now for tourists, were awash with the Great American Public on vacation. What was interesting to me was my own response to all this. Whereas four years earlier on my first trip to California I had simply let time and space position me as an observer ( _Lucy's Story_ ), this time I moved with a group of fellow humans.

The idea that I was similar to other people was beginning to become part of my self-image, even though I was still not speaking and not interacting. The difference was that I could see them doing speaking and interacting with each other, and essentially I could enjoy the differences in the behaviour of women waiting in some toilet queue.

**********

Then we flew to Milwaukee. From my point of view the most important thing that happened at that conference was playing with Temple Grandin's "Hug Machine" in the Trade Exhibits. (http://www.grandin.com) Not only did it make me "feeling-calm", but I suddenly had the experience of pre-planning in my head.

Editor's Note: I had muttered that after we had finished in the Exhibits hall, we would go back to our room. This would involve a complex route to the connecting door to the adjoining hotel. After the Hug Machine, Lucy and I went on walking round the stalls, so I could browse and chat. Suddenly no Lucy!

Up till that day, when that happened in a crowded, public place she had always simply and invisibly floated away, had got completely and frantically lost as soon as her companion was out of sight, and then became panic-stricken until she was found. She had certainly never followed spoken directions as to where to go nor had she ever waited in a pre-arranged place! After rushing all all directions for about half an hour, I found her waiting at the hotel door looking very impatient rather than anxious. This was a first! At the age of 24 she had spontaneously pre-planned from someone else's spoken information based on a throw-away, almost unconscious remark.

That is interesting because until I actually tried to remember that conference while typing about it, I had not realised that this single sensory experience had changed my way of processing spoken information, and embedded in my mind a specific response when I heard someone say what we were going to do in relation to a place.

And even more interesting, since then this response has endured pretty much in the same form over nearly two decades - although of course Lucy doesn't communicate to me she is leaving, she may not always end up where I think she is going to be standing, and she usually expects me immediately to break off what I was doing in the shopping centre or wherever we may be when she, Lucy, decides to leave, and then presumes I will turn up instantly at what she believes to be the appropriate exit door!

**********

Also it was at this conference I started to realise is that influence is part of social interaction between typical people when they are together but are not touching and that there might be a good reason why this does not happen with me. This is because we heard a presentation by a Dr William Condon ( _you can find him on Wikipedia_ ), one of whose films showed clearly the instinctive choreography of conversation in "normal" people. Part of the abstract of his presentation reads,

When a normal person speaks, many parts of the body may be moving at the same time... Both speech and body motion obey this hierarchical rhythm and are simultaneously synchronized across multiple levels... The speaker's eye blinks, which might seem to occur randomly, actually occurs synchronously with the rest of behaviour...

The listener's movements are also synchronized with the speaker's speech almost as well as the speaker's own body is synchronized with his speech... The process movements transform smoothly into each other and cannot be seen by the naked eye. They are part of the flow of ongoing behaviour.

The abstract then moves on to _Sound-Film Analysis of Behavioural Disorders - Asynchrony_. The film to illustrate this suggested that, instead of the "normal" auditory-motor reflex system illustrated above, in people with autism the system might be disordered itself, or it might reflect disorder elsewhere.

These images had been captured on 16 mm film that was then not "timed" but counted frame by frame, i.e. slowed down in visual terms. This was a concept I could understand. It showed in very simple terms that people with autism have delayed reaction to auditory stimuli

In one film ... a 4-year old girl with autism is playing with blocks ... her mother drops a block ... which makes a loud sound. The child responds only minimally to this sound at the time ... but approximately 1 second (23 frames) after the sound occurs, she jerks her head sharply as if slapped. ... The film showed a marked movement organisation change ... exactly 23 frames after the frame number of the onset for most of the sounds occurring around her.

The abstract goes on to say that as well as this delay there is another problem in severely affected persons with autism. _"Sound-film microanalysis indicated that ... they look around many times to the same sound as if it were repeating and coming from several directions."_

(Condon, W. S. (1996). Sound-Film Microanalysis: A means for Correlating Brain and Behaviour in Persons with Autism. _Proceedings of the 1996 Autism Society of America National Conference_. Milwaukee, WI, July 1996, 221-225)

This may be why it was only when I first used a Canon with Rosemary Crossley that "the sense of reciprocity my new partner managed to impart was captured while the communicative movement which I was making was still flowing ... (and that) I was aware that my message was processed instantaneously. It was five years later that I suddenly even suspected that this was part of normal spoken language and gesture, and that if one says something it is not communication unless one also has an innate understanding that the person on the receiving end is (and also should be) coded into the same convention." ( _1.1 - Touching on Triangles 1987_ )

**********

We went to New York and queued for the Statue of Liberty for three hours because "Jay" hadn't thought about it being Independence Day - only to find the metal interior was too noisy for me so we left at once. For a few days we walked the streets with the familiar names, and watched busy, tired urbanites in their natural world

We did a bus tour up to Niagara Falls, to Washington DC and other places. From there we flew to Lisbon, went to Berne in Switzerland - big mountains but only in the distance - caught a train to Paris and then on through the Chunnel to Britain. We drove a great circuit round England and Scotland and met lots of relatives and new friends.

One day I will write about my "travels with my autism" and talk about places I have been and the many people I met on those trips including Patrick Frey in Switzerland, Richard Attfield (see _2.11 - Exchanging Views, Sharing Information 1993_ ) and his family, and Sue Rubin, who later was an Oscar nominee for her autobiographical documentary, _Autism is a World_. However that will have to be a separate book!

**********

We spent a few more weeks in Britain than I had hoped, because we had arranged to meet with Dr Lorna Wing and Dr Judith Gould at what is now the National Autistic Society Lorna Wing Centre, but then was called Elliott House Centre for Social and Communication Disorders. However they were not available to see us until 12 September.

_When we did get together, the "conversation" at that meeting at Elliott House is a good example of Lucy using a keyboard for what would in other people be a "discussion". A little further on in this book, in_ 3.1 - Conversation as Theory 1999 to 2013 _Lucy writes_ , When you look at the "conversations" that I had with Petra in 1990 (Appendix 5), the actual interchange is of information and opinion. We are kind of instituting a commentary on each other's words, not the stroking and connecting of intellect that happens in the most basic neurotypicals' (spoken) interchange. _Even though at Elliott House the other people present are asking questions and Lucy is replying and appears to be interacting, the emphasis is on content and how she is using the equipment, not discussion in the usual sense._

Back then I usually created a record of any meeting involving Lucy. Afterwards I sent a verbatim printout of Lucy's output to Dr Gould, Dr Wing and the other two people present. I also sent with it a punctuated transcript of what Lucy had typed, together with an approximation of the conversation of which it was part as being easier to put into context.

Below are extracts from a copy of the printout of this meeting, together with a preliminary paragraph (underlined below) describing what equipment was used, how it was set up, what kind of physical contact was involved, and what other intervention had been needed.

"12.9.96 Lucy used full size QWERTY keyboard propped against lap-top screen. (This was because the keys had more "bounce" than the lap-top keyboard). No touch (by MJB).

Most words were repeated by MJB as soon as Lucy had finished each, and in some cases it was necessary for single letters to be read out before she could go on to the next (letter). Occasionally Lucy spoke a single word as she completed it."

**********

During the first part of the meeting Lucy typed with few questions or comments from the rest of the group.

_Lucy_ : This is the most happy time – have had such anxiety and worry about this time together, and have worried that I could carry more difficult behaviour because the computer became so unreliable. ( _It had been some weeks since Lucy had typed much because of problems with equipment_ ).

In response to a question about whether it is more difficult to use a keyboard without physical support, she typed,

_Lucy_ : That, I think, is the compensation that touch finds – basically not 'finds' – gives to self awareness, and therefore (to) memory. ( _This comment related to her sometimes needing someone to repeat her typed words since she started typing freehand_ ).

There was a general discussion about the difference between written language and speech. MJB made some remarks about Lucy not using a keyboard for day-to-day requests, and also that she did use some spoken words, etc. in a quiet environment. This had become more accurate since AIT.

_Lucy_ : That is very true, and the sort of thing that I type at home, unbelievably, is about things that interest me, like having letters to write, and essays, and saying what, in fact, I think about my own difficulties and autism.

_Lucy_ : Want to try to explain that I am not usually this strange, but I am sick and tired which make me sensorally ( _sic_ ) – no such word – challenged – that (i.e. "challenged") the States can be blamed for. ( _Bit hands_ ).

_Lucy_ : That bite was mild irritation at linguistic stupidity. ( _Lucy dislikes some disability terminology, and saw the word "challenged" as both jargon and an Americanism_ ).

Discussion about more accurately interpreting behaviour, e.g. handbiting, since Lucy used typed language.

_Lucy_ : That is what is very nice about typing, because people see good as well as bad in that kind of thing ( _i.e. handbiting_ ).

She was asked what she had studied at university.

_Lucy:_ The major was Literature, and that had the advantage of being suitable for imprecise waffle.

Had she had to read a great many books?

_Lucy_ : The problem is that I screen-read and then recall – that may be difficult for some... (?to accept?) – all this I think is part of my main problems – and I see that I have not answered (the question about reading) – Yes!

_Lucy_ : And (reading was) not the problem – unbelievably the lectures and, especially, tutorials were difficult, carrying lots of people breathing, speaking and chatting.

General discussion on what Lucy meant by 'screen-reading', and how she had learnt to read.

She was asked, did she also "see" people and places in the same way as "reading", that is by "photographing" them and recalling the scene later?

_Lucy_ : Unbelievably that, in fact, I do not think I have been asked before – this is carrying variability. There is no guarantee that I will (remember them this way) and if I try, it does not happen.

General discussion on the benefits of touch.

_Lucy_ : The touch is good, and this is hard (to answer) – feel that I could benefit from touch in maintaining gains in self-awareness.

Lucy was asked what she did with herself at home.

_Lucy_ : That is where the problem with action and the intention comes in – I think many people would say I am making this up, but I seem to need 'time-out' a lot, and I type for university and myself, and cook a bit.

After this Lucy used the Canon to answer a question about "seeing" colour when certain sounds were present, rather than hearing the noise that was being made. Unfortunately there is no record of what she said because the tape was discarded.

**********

_Over the next few months Lucy must have been thinking about some of these questions, because in the letter to her optometrist in the next section (_ 2.13 - Correspondence about Perception 1995-1997 _), she goes into more detail about reading and about the benefits of being touched._

**********

# 2.13 - Correspondence about Perception 1995-1997

_Earlier on in_ 2.8 - Feeling Sound, Seeing the Dark 1992 _you read how Lucy had been examined by a behavioural optometrist in the United States. He had suggested a number of exercises. Both then and later Lucy would attempt the physical actions, but was not conscious enough of her own eye movements to follow the optometrist's directions._

Over the years, with the help of an extraordinarily patient Melbourne behavioural optometrist, Lucy was able to give reasonably accurate answers in regular eye examinations. There were also various physical activities during the assessments because behavioural optometry involves body image and movement.

In 1995 the optometrist, Francoise Rateau, prescribed "yoked prisms" for Lucy. These lenses have a thicker section either at the top or the bottom. Lucy tried a number of configurations, and at one time had two pairs so she could compare them. Of course, unlike most people who use these glasses, Lucy and I had one specific aim - we wanted to see how they affected her typing when she was not touched by her "facilitator", including anywhere on her body or leg at the same time as as she was using a keyboard which was resting on a table and not held by her partner. Lucy had achieved this in early-1995.

Once again Lucy discussed the effects of yoked prisms in terms of her previous experience with changed sensation and her evolving awareness of how different from the rest of us she is in relation to visual processing, to her response to sound and to how her vestibular system works.

_Because Lucy also changed her Irlen tints several times, she did not have the tints overlaid on the prescribed lenses, but bought clip on frames so she could mix and match as we experimented with more "independent" keyboard access - though she still needed someone sitting near her and reading her words or sentences after her finger came off the final letter. (There is a photo illustrating this in_ Meet the Author _"1998 Newspaper Photo")_

In part this new skill was because she was "problem solving" how she had to change her movement. Shortly after the "newspaper interview" she discarded the prisms. She continued to show the same level of skill with no glasses at all.

_Once she had worked out that the rest of us processed space, movement and language differently, she realised that this was almost like a physical problem she had to accommodate. This is much the same as her working out why she needed her hand held by Rosemary Crossley back in 1987, and eventually substituting her own left hand on her right wrist so she could see her right hand more clearly. (_ Meet the Author _"2005 Celebrating Graduation")_

**********

_There were a whole lot of other subtle benefits from this approach, including some of the ideas that Lucy developed while writing her autobiography. From 1994, Lucy had been re-drafting various parts of_ Lucy's Story. _As she has said several times in this book, describing herself while typing helps her understand her own sensory experiences. You will have seen examples in this book where she suddenly inserts the phrase_ "That is interesting!" _or a similar comment in her own observations._

In November 1995 after the end of the University semester Lucy sat down next to me at the computer to start writing about High School. She suddenly started laughing. I probably growled at her - mothers are like that! This is what she said.

This is a carrying-amusement (i.e. I see the humour of this).

By this time she was typing at home with no touch, but in the more complex environment at University she needed her elbow to be touched by Barbara who was her University "facilitator" from 1993 to 1995.

The typing about the years at High School should challenge a number of theories, and I want to look at the relationship between the (physical) closeness of each facilitation partner and the social observations that in the classroom and corridor I was able to make. (That is I now understand that I was) carrying-an-actual-self-image of where I was in relation to that person.

The sight of my companion on my right periphery was as clear as a mirror in a periscope, so that using the familiar face in profile made it possible to position reality in relation to myself.

I became the apex of a triangle myself, the fixed person and the point on which (it seemed to me) other people would focus as a matter of course. That is, the visual image was made coherent because I could position myself in space, and the person next to me was like a reflection of myself, just as when I made my fingers flick I could see the world in relation to the distance between my fluttering hands and my eyelids.

That is something I realised only last month (October 1995) during learning to work with prisms with Barbara. Thinking of it, only now could I understand why the sound and sight can (i.e. sometimes do) work out of sync for me, and why suppressing behaviour and directing attention can make one able to then use someone as a point of reference.

That makes the carrying information (i.e. my newly acquired knowledge about myself) so important when we think about why behaviour management and modification is crucial.

_These particular paragraphs did not appear in the final version of_ Lucy's Story _, but form the scaffolding for several other descriptions in the book relating to her behaviours and her interaction with other people over and beyond needing a partner when using a keyboard. They seem to provide some kind of "physical" explanation for why Lucy is so dependent on other people in complex situations._

**********

A behavioural optometrist works through observation as well as from feedback from the client. In Lucy's case written queries could be answered from home and validated in part by Lucy's movements during consultations. So writing letters is a third way Lucy uses typed language in sensory assessments. Here is an example.

Francoise sent these questions to Lucy sometime in 1996. Quite a long time later, in February 1997 Lucy responded.

_Optometrist_ _:_ _Could you please define "typing"?_

_Lucy_ : "Typing" is my expression for resting my finger on the key where I can see the symbol which matches the need in my head. This may sometimes be overshadowed by another symbol, and I lost the image of the pathway down which my fingertip should travel to reach the original choice.

Having someone's hand on my wrist, or even their knee resting against my thigh, seems to reduce this effect. This is what I mean by "typing with touch".

Since she ("Jay") started to hold the keyboard (see _Appendix 1 - Picture Gallery 1991 - onwards_ ), I have worked hard on reducing this touch, and I know that when this - i.e. losing the image of the original choice - is about to occur, she makes it difficult to hit nonsense letters, because she can inhibit the swing of my finger due to the very infinitesimal vibration of the keyboard, so that I have to re-invent my typing finger, and look again for the passage it should pass through.

When I use a keyboard resting on a table and without touch, I simply cannot remember what I have just done in terms that link with meaning. I can only continue if she ("Jay") says each word just as I end it. That wipes the nonsense to movement to one side (metaphorically speaking).

_Optometrist_ _:_ _Explain the role body-image plays in "typing"_

_Lucy_ : That is difficult. I know that it does matter for three reasons.

\- (a) One is that touch (by the other person) makes my typing mean more to me. I thought originally, as most people did, that the support on the hand or elbow was important because of motor problems. Really I worked very hard to get rid of these, and I found that then I still needed touch, even if it were on the other side of my body.

\- (b) Then, after the visual changes with AIT I realised that my uncertainty about where my hand was, was governed by my eye-sight, and that I think the prisms address.

\- (c) The third reason is that the Irlen lenses showed me my hand movement more clearly, and my typing improved slowly when I had the right match of tints.

Lots of other things were pointing the same way (at the connection between touch and visual processing). I can be more accurate on the keyboard when I deliberately touch my own right wrist (see _Meet the Author 2005_ ). However if I touch my old "self-stim" bits, I get visual breakdown when I type, even though usually (when not "typing") I find things less disorientated when I prod and poke those places.

_Optometrist_ _:_ _When you type, do you see the words in your head, or do you hear them, or does something else happen?_

_Lucy_ : That is interesting! I was always under the impression that I saw the words, for I certainly see the full screen of a page when I read, and then I take the words out of it at random.

(It is) kind of different with "typing". There are words and passages that I do see, and originally the whole of my typed language was like that. This is a bit more complex now (1997) because in fact I don't think quite the same way since AIT.

Now can best suggest that I have started to use and to develop pathways to that part, (but) that it is all higgledy piggledy, so I can't make the next step in finding out how to benefit from it.

_Optometrist_ _:_ _How do the original glasses ("base up", i.e. with the thicker bit at the bottom) make typing different from the new "intermediate" glasses you are trying, and ones which are for distance_

_Lucy_ : The "base up" glasses (which were prescribed for "typing") might be happy for a child learning to read aloud, but for me were like shackles on the mind.

_Optometrist_ _:_ _Is your body image more important in social contact than your seeing the person's face with great emphasis?_

_Lucy_ : The thing (you have asked) about body image, I think is true. I can't be certain but I now suspect this, because with the "intermediate" glasses I see faces better than before. However these glasses don't change whether the (i.e. my) social urge takes over or not. I can see that I still find my own body floating off, away from the other person, or diving into a space which is really part of their surround.

***********

# PART THREE - MESSAGES AND CONVERSATIONS (30 to 40)

Graduating Master of Arts (Literary Studies) 2005

Companion to right at rear (obscured) resting hand on shoulder

to help with eye contact and initiation of hand-shake

# 3.1 - Conversation as Theory 1999 to 2013

Now, just because I understand the theory of something that involves language doesn't mean I can do it myself. For example in _Picturing Conversation 2013_ I talk about only recently recognising the to-and-fro of conversations in real people, and say that this is a new concept for me.

That is true in my world view that involves real people, but for years I have been able to describe this as an abstract phenomenon. That is really a kind of weird extension of how I learned written language from reading my sisters' Enid Blyton books and my parents' newspapers while they lay on the floor (the papers I mean!) while the television commentary was going on in the background.

When I started typing, the "Lucy" that I visualised as being the person behind my moving finger eventually learned to synthesise this effect. In the end I could see conversation as a theory but not make the connection with it being an unbelievably good thought-generator, a kind of turbo-charger for learning cause, effect and intention.

When you look at the "conversations" that I had with Petra in 1990 ( _Appendix 5_ ), the actual interchange is of information and opinion. We are kind of instituting a commentary on each other's words, not the stroking and connecting of intellect that happens in the most basic neurotypicals' interchange. For example,

"Nice day!"

"That' right."

"See you later."

"Yeah."

That has no information in the real sense, but it tells a whole story.

My comment there is touching on two different types of understanding. Since developing a better knowledge of how people process speech through the changes in my auditory processing and thanks to the Literary Theory courses at Deakin University, I can now appreciate in a rudimentary way that the two participants in that greeting ritual are not simply going through the motions. They are exchanging signals or reinforcing pre-existing contact. That is so like David Attenborough's segment on Gelada monkeys in the television series _Life in Warm Blood_ where he refers to their vocalisations being a substitute for grooming because for much of the time their hands are occupied with plucking grasses. That is neurotypical thought-stroke in sound - we humans are actually in the primate world!

If I were putting that exchange I have just invented into a story, it would have the function of indicating two people, probably male - women have a different casual greeting ritual - who see each other regularly as passers-by, touching base so that they are not ignoring each other. They have left the door open to further conversation or can pass on until the next time they meet. In 1999 I wrote a B.A. Honours thesis called _Speech and Wordlessness: An Examination of Assumptions of Direct Speech in Narrative_. The "story" which includes the description of me as "Lisa" in a classroom in 1989 is part of that exercise. In the appendix to that exercise I describe how what I had read, been told and had to some extent observed about conversations was not the same as conversation in a literary work. This is what I wrote back then,

"Language produced by the formation of sound is sequential in the head and mouth of the speaker, and is heard by the other party sequentially, but that does not mean that it is heard in respectful silence. In real life conversation both participants communicate simultaneously at all times, by body language, small sounds and often impromptu small phrases for the reinforcement of the other person's communication. Also in real life the second speaker may often pick up the baton early, and begin a sentence which is spoken in the same time frame as the other person's conclusion. It is worth considering the problem of showing timing in conversation, because in real life speech the interplay between speakers defines and creates their relationship. In narrative, building up characters is to some extent the product of synthesising that relationship. In the absence of any relationship with the reader, or the world in which he or she moves, the speaker herself may be without meaningful personality.

"Conversational speech not only takes place in a certain space, but also lasts for a period of time. At any one point in the conversation it is 'now'. The words which have been spoken and the thoughts which will be expressed are in a second dimension of time that is in the 'past' and the 'future', familiar to most people in the form of an historical time-line. However, because conversation implies many kinds of communication happening simultaneously, even when there are only two participants if one were attempting to draw a comprehensive diagram of such an exchange, one would have to sketch a number of parallel lines. When I first considered this notion of time-in-narrative as being a variation on the linear view of time with which most of us are familiar, I was unaware of recent scientific writing on the nature of time, in which 'the now' is at the point of contact between converging dimensions of time...

"However the constraint of the written word remains. The speech, which in any other medium would take place in conjunction with simultaneous non-verbal communication, and often overlay the utterances of other speakers, is codified and sequential. However it still remains a powerful and pliable tool which renders prose, and sometimes poetry, a more three-dimensional artifact."

But now (2013) I have recently acquired a "feeling" (i.e. some kind of instinct) that for the participants this is far beyond a simple social stratagem. This is still based on observation, not personal experiencing. Note that I can't see this intuitively. I had to work this out as you lot do Spock's idea of empathy.

So what do I mean by this? To me, I can make a connection between how this brief exchange works, the slight relaxation in facial muscles that I imagine happening in both of these people, and a slight eye-flick as they stride past each other. These are not social skills as taught, but the cement of social cohesion. Being at High School and in shopping centres has allowed me to watch _homo sapiens_ in his normal environment rather than being forced to imitate movements that I can't see as my own. However even now this is still theoretical.

In 1999, at the time I wrote about conversational speech in space and time, I was describing the way that conversations appeared to me as a distant skill that other people used in daily life. I tried to reproduce them but only as a literary device when I wrote stories to show that I understood the concepts required by the various units for my university studies. Reconstructed conversations were also the devices, along with quoting transcripts and letters that I used when transforming "The Chapter" into _Lucy's Story_. Of course then I was not aware that I was on such a distant observation point.

Now these days I can see in a vague kind of way the difference between two people in flesh and blood having a conversation in real time and two characters, whom I have invented and whom I have jigsawed into a conversational narrative.

**********

# 3.2 - Meeting with Me 2007

_Prepared by "Jay" at the request of the organisers of Agosci* National Conference Melbourne 2007 who provided information for the staff at the Conference venue on how to interact with each AAC user attending._

*(formerly Australian Group on Severe Communication Impairment)

Lucy presented at the 2009 Conference

**********

Several people at this Conference will have known Lucy over the years she lived in this city or have met her in other places. Lucy has attended dozens of Conferences over the past 15 years and is used to this kind of environment. She is a presenter at this Conference

Lucy will walk around the Conference venue by herself. She may move into other public areas at the same level of the building where the Conference is being held.

However she does not "run away". She simply needs a much larger area to move around than most of us. By doing this she can avoid feeling giddy or unwell due to sensory overload so that she can enjoy this Conference.

Lucy cannot filter out noises to concentrate on speech. In an environment such as this, she will hear fluorescent lights, air conditioning ducts, people talking into a microphone or background conversation far more clearly than the voice of someone actually talking to her. As a result, she may only hear parts of what you say to her. In fact trying to listen to someone talking directly to her may cause her discomfort, though she does enjoy listening to groups talking among themselves.

So you will understand that she may seem not to understand people if they approach her and speak to her. Don't worry about this. Please don't talk to her loudly or more slowly than usual - this makes things even more difficult for her. It is fine for you to just give her a quick, friendly glance and move on without saying anything.

Lucy has excellent eyesight, but she sees in a different way from most people. She may stand and look fixedly at something she finds attractive. This can happen with food on trays, but it does not necessarily mean that she wants to eat it.

She will do the same with stalls that exhibit toys and she may pick up items and fiddle with them. She will return them undamaged. Lucy's companion will speak with stall holders at the time of set-up and find out if any of them is worried by this. She can then work out something with Lucy.

As a rule Lucy knows exactly what she is doing, where she is going and why - even though she may appear not to!

If you are concerned, please tell her companion, though as a rule there are no problems. Please remember that Lucy has travelled widely and has authored two books.

**********

# 3.3 - Lucy's Song 2007

The water flows my brain.

It flows through and flows past.

It flows in and whirlpools round.

Water carries pebbles

And the grinding of stones

Is the nucleus of thought.

Destruction builds sediment and

the sentient sediment

.... is emotion in the raw.

Somehow...

We have to channel sludge

Back to the rainbow sands.

That is the role of words.

Words are worship – praise – shopping lists – possibly lies

And always the wonder of us humans as hairless mammals,

Somehow greater than angels in our despair and humour.

That is my song. (Written February 2007)

**********

_Lucy's Song_ is the end of long path, though I cannot see the stile over which I shall go on to the next stage of my journey.

I was 14 years old, and had never written or spoken coherently when I first used a Canon Communicator. Six weeks later I wrote my third poem, drawing from my mind blotches of colour and wisps of sound to create words. I called it _A Happy Poem_.

**********

Make me another world,

A world where I can sing,

Another world where the towns

Are bright in the sun.

Does the sun shine

On rainy days in another world?

Does the road go on into another world

Where I can talk and sing? (March 1987)

**********

In 1992, the year in which I turned 20 and the year in which the narrative of my autobiography ends, my hearing responded to an alternative treatment. I suddenly lost all interior music in the sense of lyrical autistic sound. I talk about this in the last chapters of _Lucy's Story_.

"For past failings, the sound ran like a chaotic sludge.

That is the way I feel about language.

Chaotic sludge transforms to clarity in intent, but not the sight.

That was the last attempt I ever made to write a poem. My inside language had changed completely. Previously my mind and my voice had warbled and cooed in unison, and my typed language and my visual words were positively reinforced by that magical process. That is, both my noises and my occasional spoken words had been completely separate from thought. Occasionally from this time on, the words I uttered meant something to the listener, though really they were only labels or requests. In a path to rather more typical language processing, I lost the most precious gift of the poetry of thought, of a dancing and swooping mind and body.

Of course I still had most wonderful control of words and I drew great pleasure from fluent prose writing, but had more thought-work in putting the characters in my brain through my finger and onto a screen. In my mind I had words, but I had not retained the gift of autistic enjoyment to the extent I had before." (p. 279)

Most of the next fifteen years were really a continual path to typing with minimal physical contact, not because I personally thought it important but because it was essential if I was to establish my own achievement in the eyes of others.

I had to concentrate on the discipline of writing for university courses. That is completely different from high school work, and in many ways completely removed from practical communication. The fact is that I can express complex thoughts but not practical information. So in writing about a scene which I have created for a story, I revisit the draft several times and laboriously build it up in increments. An ordinary thinker would imagine a narrative and then fill in the gaps. So really I am building in patterns. Other writers seem to write to communicate something they want another person to visualize.

Then in Brisbane, nearly twenty years after gaining language, I came to meet with people who also finger their language. I joined The Brotherhood of the Wordless. We see each other once a month and write from the imagination rather than pass on facts as conventional people seem to think is important. It is in this big airy room in a Community Centre near a rail line that I have rediscovered music in sight and words in finger feeling.

That is so abstract! Can I suggest that people with autistic spectrum differences, even those using coherent speech, often appear abstract when they are describing what to them is concrete world-experiencing. If this is something which does happen, it solves complex questions about supported typing in people like me.

This suggests to me that possession of the changing challenge of ASD is indeed the springboard to creativity? I think that for me the most interesting reality in my life is the relationship between facilitation and autism. My intelligence is expressed in different thought processes from most people.

You see, technically I don't have a physical disability. I can tie my shoes, make a sandwich, wash up and hang laundry. They are not a series of deliberate actions but a compulsive and impulsive ritual of something I have mastered. So it is not surprising that I do have problems with complex skills like cooking a meal or even making the right movements in response to a timer or a visual schedule.

To be a person without speech and with autistic behaviours is the most interesting scenario! The whole world is reduced to Mr. Bean as the rest of God's creation navigates my universe.

Instead of my Bean image, one could say that people without ASD or other movement differences strand themselves on the beaches of my behaviour. What a very funny image that is. Behaviour is an abstract and the whale image is a metaphor. Really, totally enchanted though I am with this, I must stop wallowing to make it clear that I am coming to the point.

Movement is the characteristic with which we associate intellectual disability. With that come the anxieties of those responsible for our wellbeing. They see us as vulnerable on the one hand, or as being incapable of measuring the subtle needs of the school or adult environment.

For what is speech? It has nothing to do with intelligence in its most basic form. It is simply a highly specialized motor movement only available to this one species. Can other animals see it as significant? Have deer any idea that antlers are not attractive to other species? And how does a dog socialize if it has no sense of smell? It is a disability which would not be obvious to a human, but the downstream effects in behavior would seem like some kind of psychological disorder!

Changing mental and physical impulses in sync is terribly complicated. In fact some people find it impossible, and given the importance that changing contemporary culture places on presentation within a social context, one could say that people with autism are possibly more distinguishable today than at any other time in history – or pre-history! (By autism I mean also the larger group of people in the diagnostic category of PDD.)

It is so funny – that is to say it is "funny" both in the sense of "funny-peculiar" and "funny-haha" as my granny used to say – that the non-autistic have social problems in uncovering the sense of autistic communication!

For many people facilitation – that is assistance in concentration and making sense of body movement – is the nearest they come to interaction. And it is also funny (in both senses) that the principal objection – but have to say not the only objection – to hands-on support is the possibility of influence, and the likely feeling of close emotional connection, both of which are typically deficits in autistic relationships!

Can you imagine the excitement if a non-speaking man with severe behaviour problems reacted to affectionate touch or subtle communication prompts? That is the response which facilitators report, and yet is disparaged as having a deleterious effect by the people who demand communication without facilitation.

The function of language is only in part communication. The function of my language is to change my chaotic thoughts into an internal coherent universe where I can be at peace. To do that, I have to type regularly in a structured setting and feel safe in my understanding. That is Nirvana for me.

For me conversation is chaos in time and sound. To steal from the annals of philosophy, I think in words, therefore thought is mine.

**********

# 3.4 - Thinking, Typing, Behaviour, AAC* and Me 2008

*(Augmentative and Alternative Communication)

**********

Just in case you have forgotten whose writing you have just been reading, here is an overview of me at the age of thirty six.

I am still a person without useful speech. As well as that I have a diagnosis of "Autism". In other words, as Wendy Lawson says, I am autistic in the way I am female – I don't "have femaleness". Yes, I have said that before, but I think it is important! The reason for my lack of speech is embedded in my autism

I believe that my hearing processing both in childhood and as an adult is part of that reason. Also movement differences in both body and mouth are implicated. And then there are the social differences which one expects in Autism.

***********

The auditory processing differences involve

\- what I hear

\- the frequencies on which I hear

\- how my auditory memory works

Those I believe are the most important in giving me the language expectations that I have.

These are

\- what I (Lucy) expect of other people's language in daily life

\- how I expect it to impact on me

\- and what I think they expect of me

I must make it clear that by the word "think", I mean the intrinsic expectation that I have. This is not deliberately thought out intelligent fact.

Actually the most coherent language I have is derived from written sources and mostly learned hermetically.

"Facilitation" (i.e. "supported typing") is the method by which I express this vocabulary and structure, but in most cases it is as if I were pretending intellectually to be an interactive person.

The way that I use other non-speech communication (e.g. showing someone something) and my few spoken words is for request, or in reply to a query related in some way to my wellbeing. Conversation and abstraction are almost absent from that stream.

The problem with interacting with typical people is that they use language concentrated in a multilayered way, especially when they use voice in real time, face to face interaction.

If I do use voice, three organizations are likely

\- The first is the vocalization typical of severe autism

-The second is up to three consecutive syllables (at the most) of meaningful speech sound. This is more satisfactory than the first type of vocalisation, but indistinct to the listener.

\- And then there is always a good tantrum ( _Editor's note: And That Is Not A Joke!_ )

**********

\- At this time (2008) my only other "voice" is my partnered – similar-to-Asperger's-language – typing.

**********

All this has implications that spill over into most suggested non-speech approaches.

The first issue is the movement and perseveration. There is a relationship here to speech

If I say "Baby cry", it doesn't mean I am going to cry like a baby. It meant that something in the environment is on the same frequency as part of a baby's bawling, but I think it is more the indrawn breath than the screech

When I was younger, that kind of misunderstanding spilled over. Pointing at something didn't mean a selection but that the colour or function attracted the focus of my wandering gaze.

Even with reaching, I didn't always grab what I wanted. That was why I was never successful in making choices with just pointing. Even with supported pointing, subjectivity was the problem.

**********

Would it have been different with early intervention? I cannot tell, but I suspect that the impulsivity would have continued. Contributing to that, my eyesight is in particles. It has changed in adulthood, but I still cannot control the scanning.

Now I can gesture or point, but only if I can see the end product, or if my partner models or articulates a simple thought.

Even now to some extent connectivity with communication is in her mind. It is more that I am simply making movements which mean something to me for the attention of the watcher.

Do you see the difference?

**********

In my opinion the facilitation controversy does not look at the implication that typed language by someone with autistic characteristics may have a lot in common with Asperger's.

**********

So the difficult movements (of interactive communication) may be meaningless to a person with autism. The correct teaching approach is to demonstrate the effectiveness of the movement – that is REWARD, which is a totally natural approach.

In my experience the difficulty comes when the acquired skill is entrenched and it becomes a "behaviour" in the autistic sense. The need is for the basic response (by the other person) to be varied. Ideally this will happen along with the person using AAC maturing and developing more coherent speech.

But what of older people? – Improvement may come, but it may take decades rather than months. Look at me!

**********

# 3.5 - Just a Glimpse at What Makes "Typing" Work 2009

_Presentation Agosci* National Conference 2009_

*(formerly Australian Group on Severe Communication Impairment)

**********

_Prepared text_. My name is Lucy, and I am an author whose autobiography ( _Lucy's Story_ ) looks at why "FC" can work for me, and also why it doesn't fit everyone's notion of what language should do.

_Question_ _._ _What were the greatest catalysts in your use of "facilitated communication?_

_Lucy_. One was my first encounter with Rosie Crossley, who recognised that using language is a function of movement and proprioception. Another was my (Lucy's) family's decision that using "facilitation" took precedence over all other life decisions.

_Additional comment by Lucy_. "Facilitation is not the same as spontaneous communication, which is why for someone like me who has sight-based words, mainstream High School and University worked best as a way of using "typing.

_Question_. _What are your biggest barriers to using "FC"_ _?_

_Lucy_. The main problem is (my own) initiation. This means that my companion must both make an environment where "facilitated communication" is required (of me), and also (provide) activities which involve "FC" and lead to an outcome which I value.

This really excludes typing about (practical) choices, though I will use hand-written, one-off choice boards.

_Additional comment (by "partner")_ _who described writing lists of the same activities but in different sequences so that one pointing gesture could communicate choices without Lucy having to type out a complex timetable. A variation on this same strategy could be used to indicate decisions in relation to more sophisticated requests, for example photocopying and then cutting up descriptions of units from University course guides and laying the pieces of paper on a table so Lucy could indicate with a single point._

In either case, the next stage would be a session at a keyboard so Lucy could explain why she had made this choice. This strategy avoided perseveration on certain symbols or rituals, and also validated her choice. An additional benefit was that Lucy slowly learnt to think out the reason for why she chose certain activities, etc., and in the long run get the idea she needed to explain this to other people.

_Question_. _What would be Lucy's advice to organisations considering the introduction of "facilitated communication"?_

_Lucy_ _._ It is the organisation's decision to implement this (strategy). So someone (within the organisation) should be able to make consequences that are valuable and (which) benefit everyone when clients use "facilitation", even if initially it causes disruption.

"FC" is a long-term activity, and may require more close contact with individual staff members than is usual, both in physical terms and as friends.

_Lucy added_ There is nothing like using "typing" for making me 'sane and concentrated'

_Lucy also said_ The underlying (different) problems with Cerebral Palsy, Autism or any other differences need to be taken into account.

For me, I make a point of talking about Autism because I am interested in (exploring) how my language, movement and sensory stuff is involved in my very strong need for touch.

**********

# 3.6 - Moving to Language 2010

_Presentation to Occupational Therapists and Speech Pathologists on_

" _Movement, Sensory Differences and 'Facilitated Communication'."_

Disability Services Queensland (State Government) South Brisbane 13 May 2010.

Prepared text and answers to questions asked during the session were typed on a computer without physical contact.

**********

_Prepared text_ _(Handed to participants as printout at beginning of session to allow time for answering extra Questions. These are shown below)._

Talking about movement differences just has so many aspects! In general terms, movement differences probably can be divided into three categories.

\- The first is movement which is either too much, or different from what you would expect from a typical person of that age in that situation. This includes actual vocalisations like screaming or repeating words, swaying, bouncing, flapping, running-away and so on. In me they all tie in to sensory stuff.

\- The second is lack of movement in face, body, mouth, and even digestion. This is tied to food intolerance, the need for being touched, actual immune response, my exposure to certain (sound) frequencies, cloudy days and also depression.

In me these two categories of movement differences are cyclic to some extent, and I think there might be a viral or bacterial effect, but testing hasn't shown anything.

\- The third category of movement difference is connected to these. It is also the underlying circumstance which relates to my needing an accustomed partner.

The fact that as a child I didn't visualise or feel my body coherently (seems to have) hard-wired my brain to be a mirror receptor for the person who I perceive as a partner - or my brain actually may be formed like that anyway.

Most of my life is made coherent by what I see as "symmetry", some of it actually symmetrical, and some (created) by slotting into gaps in the interaction, much more like a kind of puzzle piece. "Independence" is therefore based on physical predictability that is created by an accustomed carer.

**********

What is different about me now is that I can see developing scenarios. So if I make a movement which has clear outcomes - for example wiping a surface with a cloth - I can fine-tune my wrist motion as well as the next person until the surface is clean, and refold the cloth for maximum impact. However I still have not developed multilayered cause and effect.

That means that when I type, I need either physical response on my body so I know what my hand has done, or voiced feedback simultaneously with my output.

This is because I am operating two systems at once, and language seems to work in my auditory processing system which is more removed from hand movement than seeing a clean surface. This is only one reason for touch - for example the noise of air conditioning often means I need touch.

**********

_Question_ _._ _What advice do you have for new Speech Pathologists working with people who don't use speech and who have movement differences?_

_Lucy_ _._ That is outside my area as I didn't learn from a speech path, and use written language as my source. That may be a better way with ASD, because the minutiae of conversation and discussions are weaknesses that are incredibly hard to bring to finger movements.

Can say, though, you must remember that this activity must tap into the person's strength. Using a board for purposes equivalent to normal speech is misunderstanding the way to go.

"Facilitate" with parents present, and if possible leave them in charge.

With adults, make sure it is FUN for all staff. This is a difficult and transforming experience, and they need to get lots out of it.

_Question_ _._ _Do you think "FCT" should be considered as a potential communication access method earlier in people's lives than it may have been for you?_

_Lucy_ _._ That is a no-brainer! Using our strengths and the family's knowledge of intelligence will lead to better outcomes in daily skills in worthwhile things - that is the things each of us considers worth while!

_Question_ _._ _What has been the impact of access to "FCT" to you?_

_Lucy_ _._ Well, I don't think I would have a M.A. (without it), do you? and the possibilities of the last twenty four years have been wonderful

Of course, "FC" is only as effective as the environment that supports it, and that really means that the various (other) people involved have to choreograph their lives.

_Question_ _._ _When we talk about independence, people think about physical support, but what does independence mean for you?_

_Lucy_ _._ That is crazy! Communication is interdependent. It is like asking someone to waltz or foxtrot without a partner.

_Question_ _._ _What communication strategies do you have in place when a facilitator is not available?_

_Lucy_ _._ Fortunately my body language and eye contact are now fairly functional if the other person has some common sense. I can point, and then there is always a good tantrum! (That Is A Joke).

_Question_ _._ _What was it like for you before you had an effective communication system?_

_Lucy_ _._ You need to think about being a dolphin in a pool. My sympathies are with that killer-whale who - N.B. not "which" - attacked his "trainer".

_Question_ _._ _What have been some of the biggest drivers for you gaining an effective communication system._

_Lucy_ _._ The main unbelievable thing was reward and sanction - real Lovaas stuff - because after the first thrill it was more work than (I felt) the outcome warranted. The ultimate bribe was academic work ( _being in a full academic programme with no special needs component, completing Year 12 and doing University degrees_ ).

_Question_ _._ _What are the things that you do to help you control your body?_

_Lucy_ _._ That is interesting! Most control is negative, for example putting my hands behind me to change the start of a movement, but I couldn't do that without a prompt.

The other improvements have come from not being bored, from changes following Auditory Integration Therapy and real changes in the last five years that I know are from a very restrictive diet.

_Question_ _._ _Describe the attributes of one of your best communication partners_ **.**

_Lucy_ _._ That would be my mother ( _at the moment - see earlier section of this book for examples of others_ ).

\- waiting for each (of my) movements

\- waiting to be sure

\- reinforcing at once, and if I make a reasonable decision by typing

\- going through basically hell to make it happen.

_Question_ _._ _What are your comments about professionals who base their understanding of a person on observable behaviours?_

_Lucy_ _._ That is a real problem, but as human beings that is how we are programmed, and we need to give them the protocols to reinterpret.

**********

# 3.7 - HEY, Are You Talking To ME? 2010

_Presentation to Post Graduate Social Science Students University of Queensland 2010_

Power Point, accompanied by video of Lucy typing without physical support while preparing this material.

Prepared text.

Hi - I can call myself "functionally disabled" for reasons connected with what is currently called Autism. That is on both subjective observation and testing, such as IQ tests, I am carrying all the signs of intellectual disability.

(However) on the inside I am competent, articulate and observant! I meet regularly with people who have access to language by keyboard use, and can assure you that this (internal competence and understanding) is probably not uncommon.

That is, these people have just happened to be in the right place at the right time when this opportunity arose (That is, they only demonstrated these characteristics after they started to use a keyboard). So I can expect that for every one person who has had this chance (to use "facilitation") there are hundreds you will meet professionally (who have not).

Examples of bad communication by professionals (which I have experienced) include

\- being talked to in baby talk - and this happens to old people and non-intellectually disabled in wheelchairs too

\- being talked about with a carer or on the phone without some apology or acknowledgement

\- rhetorical questions (which one can't answer)

\- assumptions about what one likes

\- your being too nice to me - yes, limits are there to be tested!

Your turn - you can add to the list!

**********

The idea that one can judge a person's understanding, thoughts and feelings from (their) body-language and physical response to experiencing ( _i.e. what they experience_ ) and to your input is SO twentieth century! Deliberately creating measurements of people's abilities is the expected outcome of a user-benefits society.

Actually I guess that you all know that "relationship" in your sense is mediated by how your brain and body interpret the other person. So actually "labeling" is more about a reaction by the observer than my diagnosis. The various characteristics of people who are diagnosed with an intellectual disability include clumsiness in spoken and non-spoken communication which may be complicated. Autism is only one (such disability).

Now (this is an idea someone told me about, and it helped with me), given the way that a person with communication, sensory and movement differences is difficult for you to interact with as a peer, try - yes try - to imagine that she or he is a person with whom you interact every day as genuine equals, or as if she is a person you admire. I actually mean that you should superimpose over the disabled person a mental hologram of someone else you actually know.

If this sounds demeaning in itself, of course this is all in your imagination. This is practice, it's an exercise. The actual thought (in your own mind) may only have to be in an instant. Because we are instinctively like a bob-sleigh rider, once you have used baby language or simple condescension (to another person), you can't claw back up the slope.

This does not mean that you deluge the person with inappropriate language. In your future roles you are employed to serve a purpose in their lives, not to make yourself feel good.

**********

Practical factors in talking to someone with communication difficulties include

\- tone and pitch of your voice - lots of people have auditory processing problems, especially with women's voices

\- use clear and non-wriggly body language

\- when working try to wear comfortable clothes

\- of course if the person has Autism, don't wear perfume or strong deodorant or aftershave. What has that to do with how you talk to clients? Well, it is only good manners!

**********

The way I find easiest to cope with is for someone not to look at me, and to either use throw-away comments or \- if the topic is practical - short sentences. It helps if there is a written version of plans, explanations or instructions, or you use slow, good gestures.

I can understand a little Sign, but not use it for the same reason that I don't use speech - lack of shared attention and problems with (making) multiple movement(s) in conjunction with meaning.

To illustrate (this), if you ask me to do something and I say (i.e. speak the word) "Yes!", it might mean that I understood you. It might mean that I like the idea. However if I am going to comply it will be without speech ( _i.e. I will try to perform the action_ ).

So (my) saying "Yes!" doesn't mean I agree to do something .

The way each person with difficulties with communication interacts (with other people) is different.

And don't forget my articulate "cousins" with Asperger's, who are fluent but often have the same receptive problems as I do.

**********

# 3.8 - As the Colors Swirl 2011

_This piece was written for inclusion in_ All the Strangers _, edited by David Preyde (Toronto) a collection of writings by people with a diagnosis of Asperger's or autism, to be published shortly. It is is an overview of how the author experiences her own ASD and is relevant to how she communicates._

**********

At the time I write this, I am thirty-eight, mostly happy, a woman with autism living with her mother in Australia. I don't speak. I have actually never been able to fine-tune my actions enough to cook a meal without help, but am a poet and published author.

As a person with classical autism who was diagnosed over 30 years ago, I am interested in explaining that the common features between all of us (i.e. those with a diagnosis on the autism spectrum) are in some ways more important than categorizing us by how well we blend into a neurotypical landscape.

In spite of the obvious advantages of being able to operate without intense support, sometimes this can lead to unexpected disaster, whether that involves obsessional computer hacking, or (equally unpopular) more obvious autistic transgressions when simply walking down a street. Finish reading my waffling contribution and you will see what I mean!

**********

As you know, the underlying aspects of ASD are integral to everyone who has a diagnosis on that spectrum, but

\- different experiences and

\- different neurological and movement difficulties,

\- different feeling and other sensory issues, combined with

\- memory and information processing,

are superimposed on the person each of us would have been had our genetics and other characteristics not come together in babyhood.

I love getting flashes of autistic perception. This is a picture of what my brain makes of what I see, hear and feel from my skin, balance and body-in-space. That is who I am. That is how I felt almost continuously as a child. As an adult I can see and hear much more like typical people, but my underlying brain processes are still quite different. I don't know if this is only because I am pre-programmed this way, or whether the experiencing of my infant and childhood world created pathways and patterns which have largely endured.

What do I remember about being little? Well, of course the world was big and noisy. However watching ordinary kids I remember that my world was big and noisy in a different way. The noise was eternal in one sense. It involved my own breathing and lots of background noise that I really don't think other preschoolers notice, and yet I don't remember most people talking to me, or even conversation happening around me. So I guess that, except when I was immobilized and forced to pay attention, voices were outside the frequencies that I processed.

No wonder even now I don't think in speech patterns, but in single sound bites and visual flashes. Intelligence is then a problem in the conventional sense, because social reasoning is by analysing other people's response to stimuli.

The face is not a map for me. Sometimes other people's faces are a collection of unrelated features, rather like a slow Google Earth download, with bits and pieces arriving out of order. This is no longer a sensory thing as my eyes and vision have kind of caught up.

But my processing of this information is different enough from the average to say that I can see why some researchers could suggest this is a problem with understanding other people's mental states. I wonder what other people on the spectrum think about this experience.

Faces in two dimensions, as in photos, screen or mirror, are more likely to be the way I think that other people see them, but I still can't get the "click" of what they should trigger in my understanding except very occasionally when I myself am very emotional or stirred up. In my book, _Lucy's Story_ , (p.p. 253-6) I describe the first time I recognised this phenomenon.

The same thing is true of my own mirrored reflection, and correspondingly I can't always recognise the bodily sensation which comes from good or bad feelings.

Of course I have changed and matured in relation to the broken-up-map effect, but not to the extent that has been experienced by some autistic people who acquired speech fairly early. Difficult to say what comes first! You may have to sort that out from your own experience – if you are also a person with autism, of course. If you don't have an ASD, you have missed out on all this fun stuff!

I suspect that even taking into account recent research into genetics and intrinsic brain structure, early childhood sensory processing must make paths in how the social brain works. As social interaction and conversations between ordinary people involve a lot of instant problem solving and word-inspired guessing, prediction and repairing of lost impulses, we are likely to have some differences in how we do this. One reason may be because at some time in our lives, our brain differences have been reinforced by some personal responses to other people's faces.

So I either have a bland expressionless face, experiencing lack of automatic interaction, or a cheerful eye-contact which is more appropriate in a small child than in one approaching middle age. What is interesting to me is that often how animated my expression may be reflects how efficiently I am processing the depth of facial features, including wrinkles, lines under they eyes, cheek slants and lip angles. I also have changes in how I can see skin tones and shadows. On "good" days – those on which my own face is so close to typical that people in the street will ask me for directions – I see their faces in much the same configuration as on a good quality television.

If I am seeing things in a kind of sparkly and colorful way, my expression is childlike. By "seeing" I am not sure if it is in the eye or deeper in my brain, because this effect is accompanied by more urge on my part to initiate physical contact, though even at these times my basic instinct is to withdraw from touch.

In the times I have a flat expression, other people's faces and bodies don't inspire response. At these times my own skin is dead, and I am quiet and withdrawn. By and large these episodes follow a cycle of several weeks and I recognise a link with having a cold just before the "grey" or non-responsive episodes which can last for days. I don't think they are caused by infection though, but my own immune intervention to the common cold or whatever.

How do I know this? Well, when my depth perception is shallow and has monochrome colour effects, lots of chaotic thoughts are present and I have problems with cause and effect.

Even more interesting in relation to the main signs of autism, human faces are less meaningful then, though intellectually I can work out other people's emotions to some extent. Unfortunately at those times intellectual functioning is low, almost like trudging through a swamp, so I couldn't care less what they feel in relation to me, though I can grieve or rejoice for their own emotions.

Well, I only feel this way either on cloudy days, or over those weeks when my metabolism slows down and my sensitive hearing changes from alert to distant unbelievable noise, voices and chaotic stirring by moving air and wind, to the gross discomfort of nausea from the same. It is basically part of the same set of neurological things that make for unusual social impulses and problems with cause and effect.

As so many of us do, I am inhabiting an alien planet, different in many ways. Rather than traveling through the world around me, as I gather other people do, I carry my world with me as if it were an active shell.

What do I mean by "carrying my world"? I think that most people see themselves as moving between the things and the space on each side of them, so that the area in front comes up and parts before their faces, because that is how the television camera shows "reality". Somehow I use space differently. My space envelopes me as if I were in a cocoon, and the items and other aspects of my environment enter and leave that cocoon.

When other people or unusual events intrude, the surface of this shell either distorts or shatters, like the surface tension on a drop of water. This is really something that happens when things are "grey", though if I get a fright in good times, my internal alarm works the same and my behaviour reflects that. In the good times this effect is amusing or beguiling, rather like being at a funfair. Autism is sometimes such fun! Unfortunately that is the up-side, but then there are unbelievable chasms of dread between those happy times.

As a child, this was scary. Now I understand it. I don't fear this effect but I do dislike it. As physically I experience nausea and paralyzing terror, I prefer to avoid it.

Diet is part of the equation, because if my tummy is sore, my sinuses are blocked and I am "down", things are even more horrid. My best dietary solution is a version of the Specific Carbohydrate Diet. So diet is part of a pattern which for me is a combination of innate brain function, sensory difference and learned accommodations to differences in movement and response, and immediate impact of the environment, including what I eat or even breathe from the air around me. (Polyurethane carpet lining is one such thing, as is make-up even on people near me, and so on).

Understanding that what I eat is also involved has been a great breakthrough. So basically the inference that I draw from this is that the neurological differences which are part of my ASD are made more obvious by the factors I have just talked about. These factors themselves may well be a downstream effect of how my brain works.

Either way my intellectual functioning, or what some people might call "adaptive" functioning in relation to real life skills, is way out of line with how the thinking-part of my brain whirrs along.

To summarize, I can see things in a different relationship from that which I think most people do. That is, I have differences in depth perception and differences in colour discrimination, and these are not consistent so I live in a magic world where each day and even hour is a surprise! Of course this may be peculiar to me, but I know it is part of the pattern which is currently given the name "autism".

I also know from reading recent research that sensory differences are only part of the signs of ASD, but they certainly affect both how we act and also the information which our differently-designed brains crunch to produce output that affects those who share their space and lives with us.

This is probably the same phenomenon whether in a fairly conventional marriage with a complete lack of cohesion between the "NT" and "ASD" partner, or in the family of a severely handicapped adolescent who completely disrupts and endangers the way everyday life proceeds. It is misleading to think that behaviour is a marker for how one thinks, as is the current practice of testing for conventional understanding

Over the last hundred years or so, the method has developed of measuring intellectual functioning on a scale devised to check off points which look at how we perform within the modern urban world, and designed for the average citizen. However we know that how other people see us is not a measure of our intelligence, but of our method of functioning.

That is, intelligence and intellectual functioning are not the same thing. Intelligence is an abstract understanding which can be fed by observation and interaction. Intellectual functioning is what one does with that intelligence in terms of making one's body, voice and social contact come together to create the effect one wants. In autism of course voice (or language) and social contact are already compromised, and there is evidence that movement and its attending qualities, sensory processing, are not the same as those of typical people. So intellectual functioning is going to be different.

Very recently I started picking lollies (Australian for "sweets") up from the ground. I had thought I totally had passed that stage! Unbelievable to say, suddenly at nearly forty, my hands and eyes came together again, and my childhood and adolescent memory patterns are switched back on. I need that completed hand-to-mouth coming-together, and it is as strong as my hand-biting urge. Very awkward, and as some readers will know, very limiting!

This is an example of thought overtaken by a pattern which comes from my childhood-visual-hand-to-mouth urges. Funnily enough I can feel the same click-click switch in my head when I have to make berries or nuts on my plate into a multiple of even numbers, or when I manage to manipulate my mother by making her environment meet my needs.

When I hear the partners of adults with Asperger's talk about the way their married life differs from that of other people, I can see the same effect. I sympathize with young ASD people in the well-meaning efforts to make them "happy" by encouraging normal social interaction. For some this works great!

For me participation is neurologically and intellectually a cutting experience. I am so happy when I am in the same space as interactive social people, but please as a spectator. Social reciprocity is overrated (personal opinion). That is an autism-style joke.

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# 3.9 - Questions, Answers, Memory and All That Stuff 2013

I don't have much success with interactive conversations when using spoken words. When these conversations appear to take place, my words are either an offering of opinion rather than an answer to a question, or a comment on what others are saying. Interruptions mean that I may melt down.

I seem to have the most problems with linking real events with my fluent language. The processing-relationship between language-in-my-head and my memory is rocky. I think it always was, even when I learnt to read inside myself - but does that really matter for my emotional well-being?

Having clearer articulation would have helped I think, but only if that had happened right back there when I was about two years old. The reason I believe this is because I do know people who use "facilitation" but who have clear but very autistic speech and who have the same gap between the high-level language of their "typing" and the apparently self-referenced articulations they throw out.

The words that I type with "facilitation" are different from when I type rote words like shop names, and are also different from when I insert "spacing" words. "Unbelievable" and "universality" are examples of these. As you might expect "universality" kind of translates into "generally" but "unbelievably" these days has come to mean "something that is a fact, not just a belief"!

As I have written earlier, I am autistic, so I would have unusual conversational patterns anyway, and these will have been compounded by my not chatting interactively as a child. Because of that, no one could help me describe facts or understand the difference between truth and falsehood. Also they could not give me answers to questions that another child would have asked and which I did not. I would "ask" what I was allowed to do by trying out an activity and finding out the answer from what the grown-up did.

This has spilled over and become embedded into my typed language. Sometimes I will deliberately type something which may be incorrect so that the person with me will contradict me This gives me the correct information. On occasion I seem to type a question, "Are we doing such-and-such tomorrow?" but often that is really a short form of my avatar, the "imaginary" Lucy saying, "This is the moment you (Lucy) should be asking, 'are we doing such-and-such tomorrow?'." I am doing what an actor does. I am going through the motions of asking a word-based question. Even then, I very rarely ask a "why?" or "how?" question in either "typing" or by spontaneous interaction.

This is why I have so much trouble with answering questions too. When you add this to my problems with cause and effect, and to my memory-based difficulties with events through which I have moved, or with articles which are even now in front of me, but not integral to my memory-thought - well you can see my problem! That is part of the difference between intelligence and intellectual functioning.

Requests and expressing my experiencing-feelings and wants (that is, the "feelings" and "wants" that are part of what I am experiencing at this instant) are by pointing or other spontaneous movements and sometimes by spoken words as cued by someone offering a choice of answers by gesture, card with words or pictures or lists. Sometimes just my own simple thought-spurred speech works fine, but sometimes it is completely confusing to the other person.

Now, you have to be careful here! As a young woman I didn't always use words spoken as accurately as I do now (see 1.11 - - _Speech without Communication: The Old Me circa 1991_ ). Even now these spoken words are still coded to how my brain works, and because of my autism they are not flexible. For example, if I speak "NO!"

\- it may mean that I don't want to do something

\- it may mean that I can't do it

\- it may mean that I will do it later, but have to do something else first

\- it may mean that the means to perform that act aren't available ("Do you want some coffee?" - "No!" because I know we have run out of coffee)

\- or any other reason for not immediately saying, "Yes!"

In contrast to this rudimentary speech, the kind of language I type most easily is fairly abstract or relates to narrative. This is kind of in imitation of what I read in books in the days before I could type, and so could only imagine the possibility of writing stories. Person-to-person conversation and communication-in-real-time contribute little to this collection of typed words. Really my best attempts at conversation are by deliberately commenting on statements made in my presence by other people.

This isn't the same for all "FC" users, but is an illustration that this is a highly individualised strategy and depends on many factors, some of which are

\- past experience (including sensory input)

\- mobility and movement differences

\- changing circumstances, for example education

\- neurology and characteristics of each diagnostic group

\- facilitator skill and expectations

\- and many other things

For example, when I wrote the original draft of this in 2011, I said, "Now, everyone moves and makes sounds, and some of these are intentional and designed to get attention. Others are intentional but are for personal reference. Even profoundly deaf children who don't have intervention make noises. I can feel my own articulations as vibration much better than I can hear them, and some of my attempts at speech sound are inaudible to me".

As I say in _3.12 - Echoes, Images and Practical Stuff 2013_ , "When I sing, I can hear the melody but only approximate the words that go with it, and those are face and throat movements which have no kind of meaning except as hangers for the tune to which I connect them".

That may be why I can't reliably speak the words I type, unlike Jamie Burke, one of the other contributors to _Autism and the Myth of the Person Alone,_ who also has a diagnosis of autism and who, when he was twelve began to speak the words he could type. He showed he could read aloud both what he had written and other texts. From what I have read, this (speech) was referenced to the written word".

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# 3.10 - Picturing Conversations 2013

For much of 2011 I was thinking and writing about the physical impact of what we call "facilitated communication", and also about what seemed to me to form language use in socially competent people who have evolved in spoken environments. That forms the basis of some sections of this book.

Lots of my assumptions are probably either superficial or inaccurate - but, what the hell, I am a researcher, not a participant in the speaking world. Now, if you are involved in the long-drawn-out, quarter-century argument about this stuff, i.e. "supported typing", you will have noticed the real problem existing in what I explained as the basis of using typed or pointed words with a partner in close contact. Of course you have!

Where in my writing do I talk about having an uninvolved assistant who has no previous emotional or practical contact with the typer? What is an acceptable level of pragmatic language, and what tests are appropriate to demonstrate competence? Why don't I talk about what is popularly known as "facilitator influence"?

I am much drawn to Steven, a young man who attends a day programme where they have a daily cooking session. Like me at his age, he is extraordinarily sound sensitive, like me often wears industrial-strength ear muffs (see _Picture Gallery_ 2006) and I would guess has auditory processing problems very similar to mine. Recently we had coffee with him and his family. Every day when he comes home, his Mum asks him what he cooked for lunch, and every day there is either no answer, or a wrong response. Why does this happen?

After our visit, his mother e-mailed us and said, "Steven asked me not to tell you that he 'does not know past and present tense'. He had typed, 'Please do not tell them. I feel embarrassed that I do not know tense'." Since that message, he has agreed to share this with you. Thank you Steven.

You have already seen another example of that, phrased rather differently. In _1.1 - Touching on Triangles_ _1997_ near the beginning of this book, is this sentence, from page 84 of _Lucy's Story_. "Whatever (the question) was, it resulted in the second sentence of my life. I, who could not speak my own thoughts, use pronouns or make comments except with concrete naming words, blurted out, letter by letter, an observation that I now see is as accurate as it is typical of autism: 'IRUNTIMEMYWAYNOT YOURS!'."

So let's look at it from another angle. This information is in the past, but "past" as expressed in language is an acquired concept. Even the most socially deprived toddler who has reliable auditory processing is exposed to different tenses or speech construction, so that to some extent this becomes a concept which at some stage seeps into the gap between auditory language and what occurs around the child.

This concept of past events may be fairly elaborate and factually based in the way that modern western culture expects or simply an awareness that some things have happened in the past and we remember them and speak of them, like impressions or oral traditions.

I can see myself in this. If I am asked to describe something I saw the day before, I think in totally different dimensions. I can't really make this clear to someone who isn't like me, but I will take a simpler example. This one does not involve time. It shows the same phenomenon entirely in terms of space, visual processing and describing concrete items as well known to my facilitator as to myself.

Imagine it is twenty years ago, round about the time I finished High School. I am sitting with my computer at a table in the living room at our house in Dromana (on the coast south of Melbourne). My mother asked me to list the furniture in my bedroom as if I were ticking it off from left to right. Of course in that case, I knew what she wanted, and what the scenario was. She was even leaning her arm on my shoulder though not touching my typing arm. But, guess what? - I simply could not make the words come to my visual internal screen to transcribe them to make a version which bridged the gap.

And, then she dragged me (figuratively speaking!) into the bedroom. There I had the dressing table, chest of drawers, and so on in front of me, but even then I could not make the left-to-right sequence transform to a list. Why was that? And what is its relationship to telling someone about either past events or describing objects that I can see and they cannot?

That is weird because back then when my mother was making this scene, I had exactly the same confusion and feeling of complete disorientation that I get when asked to describe something that I have seen on another occasion.

That is, I immediately felt giddy, I could not match hand and eye, and I was completely without understanding of what I was being asked. This was the same even when we went into the same room as the furniture.

Now that I have decided to describe this episode and while I am actually typing the words you are reading, again there is a strange cross-over effect. My skin is flushed and I am chanting autistic panic words while I type. This is what I meant by the term "feeling-trigger" which you first met in the Preface, _Hi! It's Lucy Here!_

When I think about things in the past, they are expressed in emotional terms, either by vocalisations or by physical manifestations, including very strong smell-memory or a skin-response. However I can't describe them in typed words.

So when I wrote my original autobiography, how did I get the descriptive stuff out of my memory and on to paper? You may remember that in 1.3 - _A Patchwork of Phrases_ _1987_ , I wrote, "Once I started to see my own sentences as they rose out of the depths of the typewriter, I typed visualising myself as another person talking to the Lucy who I had been for so many years. I had often felt as if there were a second person within my own head when I had imagined using speech. Typing fell naturally into the same pattern. When Jay saw this conventional written language appear, she thought I was using it as other teenagers do. She did not realise that I typed more fluently if I imagined I was sitting above my own body, watching as another Lucy would, a new character, also called Lucy, going through the motions that all other literate people did. It was as if I were role playing." ( _Lucy's Story_ p. 105)

You have also come across an example of this way of processing one's own experiences in the character, "Lisa" in _Appendix 4 - Mapping the Classroom with Pauline (Sue) 1989_.

So I worked much as any researcher does when writing biography. I could use written sources and also video and sound recordings as I had at high school and university. There are some extracts from these actually included in _Lucy's Story_. Others I had in front of me, and had some jerk to my memory, which meant I could dramatise them as scenes, and place the person I could identify with in that setting. That is how I transformed Rosie's case notes into the version you read in _1.1 - Touching on Triangles_ _1987._

The other way I could call up the past was from the conversations that my family had in my presence. In other words, I relied on oral history. Once again there are transcripts of a couple of those conversations in the book, but most of the childhood chaos I caused came to be a ritual of enormously dramatic legends and stories in which my sisters gloried and frequently repeated, so they were part of our family narrative.

That is what I meant in _Patchwork of Phrases 1987_ when I refer to "some sense of the narrative quality of ordering one's own life against that of other people, and that stories differ when they are told by different people, and even when they are told several times by the same person".

However later I also wrote, "There is a problem which still bedevils me. I still have not developed clear links between what other people expect of my attempts at communication, and how previous events and other facts are tagged in my language".

One of the examples from message books that I include in _Lucy's Story_ is a language activity when I was in specialist autism programme.

"Language and exercise also took priority at the Autistic Centre. Even nonsensical outings, like a fairy-tale play Samantha tried to make me describe, were used to work on expression. Dutifully she reported back to Jay. (The teacher wrote) The teachers who went to the Clown Show said that Lucy thoroughly enjoyed it, clapping throughout and giggling a lot at the end. I found it hard to get much out of Lucy. However she drew many pictures of the story. Before she did any of this, I had to find out the information from one of the teachers, and then Lucy would say it and draw it." - Samantha. April 1983. ( _Lucy's Story_ p. 73)

Now I can remember the episode clearly, not in terms of place, or even who was there, but that wonderful "feeling" of my thought hooking into the response of the other person. That is something that one can see in a small child. As an example, we have a video of my four year old niece, Shay, and her grandmother (named "Jay" in my book). Jay asks Shay what she did at Play Group. Shay says "nothing". Um. Jay says, "Oh, you didn't play any games!" as a statement. Shay immediately tells us a game she played. And what else did she do? "Can't remember". "They didn't give you any fruit!" Outrage! Shay had definitely had her piece of fruit in the scheduled break! Everyone knows that!

Now one thing is quite clear, even to me. Shay's language memory starts working when she is stirred up. Shay got cues from wrong statements - that is she had the information but didn't share it unless the other person had enough understanding of the environment to cue her.

I am a well-educated adult, but cannot bring my cognitive understanding of information-sharing as a theory in line with the actual brain activity of the average four year old. Would this have become part of my brain function had I really had some language based interaction by the time I was at the developmental age Shay is in our video?

This is fascinating! We humans are evolved as a species with the potential for language-based communication, but can't become competent, and even begin to interact linguistically, unless our brains stretch and trim themselves.

I think that I understand how "carrying" (in my sense) smooth-linkmeshing feels. That happens for example when I see food I want, or the route I should walk spread clear in front of me. In the intellectual sense it happens when I type, as I am now, about something that comes from my own intellect, even something as difficult as this. But when I try to imagine what another person is intending, and that includes someone like my mother just scuffling from task to task, the meshes of my brain fracture, and I experience something like a mental gravel rash

Most of the time I can see words that I am typing in my head, and then the words link backwards into the "thing", whether it is an action or a real entity, that is whether a "carrying" thought of an abstract or a three dimensional construct like food, a place and so on. (i.e. The thing is "invented" by the words I produce) It has always been like that since I started tying, and even before that when I drew obsessional words like "Just Jeans" and "Safeway".

Now the only other actual language I have is speech. What a weird way to say that! These days my echolalia in most cases is delayed echolalia, and when one of those phrases erupts, it is arising from memory of some kind or another which is triggered by my physical response to the events around me in that same instant I emote or scream or exclaim.

Remember what I said earlier when talking about working with Pauline at High School. "I explained the layout so vaguely that most people sooner or later teasingly threatened to throttle me. As a result, nowadays whenever I want to say that I am not being deliberately obstructive, my response is automatic. 'No w'ing neck!' I squeak. This is an apology for being so inconvenient, not fear of an irate companion going suddenly berserk. Speech remains a collection of responsive memories, not communication."

It is important to know that, when those memory-words shoot out, they do have some past relevance, especially if the onlooker is able to understand exactly what it links to. For example, if I am shouting and then speak "Neighbours!" the link is with anxieties various loved people had that some grumpy neighbours would complain, and definitely not the television show. So "Neighbours!" is kind of an apology, and my neurological comfort is greater when the person I am with is subtly aware of this connection.

Now, funnily enough this good feeling doesn't happen when I speak the word "Sorry!", which is a phrase I have been drilled in. So I guess that my spontaneous sounds are somehow close to the interactive way that normal human speakers create a velcro-like bond which is the underpinning of interaction.

I guess what I am trying to describe is a phenomenon rather like what is observed in people who read very early with great fluency and speed, and then either only develop reading aloud in later childhood appear to have dyslexia and remain functionally illiterate.

That is, I use spoken sounds but in such a way that are obviously autistic. So if you are a non-speaker, as I am, learning to speak various expressions out loud is not necessarily a path to what most of you use as language - a connection with real life. Though, I suppose, when I think about it that this is only reflecting my own experience. However I have the impression that in a more subtle way this is true of some adults on the autism spectrum, who use fluent language not only in writing but in what seems to be interaction, even though in some ways they are using a script.

Once I had finished the first draft of looking at physical interaction in the way I use a keyboard, there remains a big, lousy problem. Now, the way that I have to be helped when I make words and sentences on a keyboard has been criticised by people as far removed from each other as some sections of the disability rights movement and the most Skinnerian behaviouralists. The best way to find out about that is to search for "facilitated communication" on the internet, and see how often lots of entries for "skeptics" come up.

To me that is not a joke, and neither is it a laughing matter to a lot of other people. It incredibly worrying because the issues I have raised in what I have just written are the areas that people like me are least able to make sense of and where we almost always are tested

The problem is that telling people things which happen outside my body is a chaotic, simply awkward approximation of nothing I can describe. Then there is the exercise where an object is visible to the typer, but not to the partner. That is a weird experience, and one that I have battled to explain to myself. But this year I have started to understand the role of the partner a little better, and it is probably the way it is because of my neurological differences and the way that speaking people link up in a kind of choreography in time.

I wonder if that may connect with how speech becomes conversation. That is, I have understood for a long time that conversation and information passing are not the same thing. I recently decided that the basis of information passing is the conversation-speech which most people develop in the early years - a most ordinary activity for most people, but once that came to my attention it answered so many questions about interaction.

I was already aware of Dr. William Condon's work on synchronicity, but now I realise it is just the tip of the iceberg. Redcliffe in Queensland, the place where I now live has a seaside promenade where people sit in cafes, meet to chat and to browse market stalls and shops. Watching people at their tables I became aware of a temporal overlap in speech in which each participant already is drawing in breath to answer the talk-maker of the moment. Often the reply is also flowing even before the original statement or question is half finished.

So I was fascinated to hear my mother talk of a related phenomenon that she had noted. This was caused by her irritating way of dithering before the end of her sentences. The person to whom Jay was waffling was finishing her sentences for her! Jay was so annoyed by this that she started keeping a tally of how many of these follow-up sentences were pretty much what she would have said, and which were completely off track. It worked out at pretty well half and half!

From the first, I was aware in the exchange of the effect of this kind of interaction in working with a "facilitator". In _Lucy's Story_ p. 82 (and again in _Touching on Triangles 1987_ ) I wrote

"The sense of reciprocity my new partner managed to impart was captured while the communicative movement which I was making was still flowing. After all, in normal conversation you do not wait for the other person to complete the word, then analyse it, and give your permission to go on with the next. ... So part of my new ability was triggered by the reaction of someone with whom I was in close physical contact. In some way it seemed to compensate for my complete loss of spontaneous social interaction. That I now know is not likely to develop in someone with autism who has not acquired useful speech while still a child. For social spontaneity to develop one needs reciprocity."

I am amazed now that I spotted it so early, and then eight years later when I drafted that passage from reading the prompts of the forms that Rosie had completed back in 1987 that the memory was so clear.

Now that is what I mean when I talk about the overlap in speaking people's conversation. Somehow when interacting with people in the same cultural enclave, we as a species have an ability to anticipate and respond to cues that have hardly begun to form.

Can this be related to the interaction involved in my kind of typing? I can remember the way that being touched when people spoke made more sense, and I don't think that this is just conductive hearing. Somehow we have still got that breathing-and-thought-touch. I can see that people interacting socially are not indulging in some kind of obscure thought-ritual which some people have called "mindreading". That is an unfortunate misnomer.

You can see that our seaside promenade is a fertile ground for an unattached observer to collect data on social behaviour and conversation. So, while I lurk with my roaming eyes apparently not connected to those around me, my peculiar visual processing gives me a slightly different viewpoint. My lack of fluid acceptance and integration of movement, colour, light and sound is a real factor in my inability to create social connections

But it also means I can create slide shows where most of you see cinema! What I mean is that I am using the same "technology" (metaphorically speaking) as the Victorians did with still cameras to get multiple clear pictures of how a horse's legs moved when he was galloping.

That makes my understanding of interaction a temporal interpretation. Slowly as an adult strolling around these chatting crowds, I have made the discovery that understanding and interaction are not taking place at the end of each segment of expression, but that they feed off each other as the opposing forces of problems solving and assumptions (perhaps "informed guessing" is a better expression) take seed in the visual, proprioceptive and auditory processing of conversationalists.

Other people seem to have the weird ability to bat thoughts into the ether, because it isn't only speech, gesture or facial expression that does this. Somehow they all come together, but even here there is a kind of overlap. It is as if there is a "seventh sense" - that is Carol Gray's concept of social interaction as a "sixth sense" fits OK here, but beyond that there is a communicative shadow which binds the other senses together. Of course it can't function without those other senses! (http://thegraycenter.org)

Actually that is pure hypothesis - can't wait for the time that mirror-neuron stuff and other chemical brain facts are as well understood as Mendel's sexy peas! So I have to assume that in some way the ability to communicate as a human is a really mysterious field.

Now, one of the questions that doesn't seem to have been asked is, what is the mechanism by which speaking people impart information to a person where you don't both know in advance the building blocks from which you will construct a visual avatar or a pseudo-shared-memory, let alone communicate an order, or make known the kind of information from which the completely uninitiated person can make a judgement.

What is the brain expression that links experience to narrative? How did the runner at Marathon bring together his lips, throat and tongue to let the soldiers at the other end of his run not only know that disaster was no longer looming, but also give them numbers and a picture of what had happened? Why is it that Shakespeare could cause his audiences to see a cold and barren heath by indirectly asking his actors to behave and speak the sounds he wrote?

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# 3.12 - Echoes, Images and Practical Stuff 2013

Basically my speech echoes visual images of facts, or of things that are concrete such as food. It also echoes words associated with my own response to a stimulus. Sometimes that may be in the form of delayed echolalia. So the audience may not even recognise what created the expression. Occasionally I make eye contact, and can slowly link the fact that is in my head to the need for my companion to understand. Then a learned phrase may surface on my tongue.

Now with many people with autism this kind of learned speech is more developed. For some this may be a natural event but others are triggered by intensive early childhood programs. In my case I don't know if that would have helped because my auditory processing is very odd. Obviously it would have made a difference, but so did the learning that I had from being one of a tribe of little kids. Not all children who have intensive intervention reach the goals expected of them anyway.

The thing that really is interesting to me is that the voices of typical people are inflected rather more than those with Asperger's, and have a lot more variation than those with autism, even those who develop speech. What is also fascinating is that many people with autism sing, but cannot sustain full sentences.

I am one of those, so I can speak (to coin a phrase - not literally) from experience. When I sing, I can hear the melody but only approximate the words that go with it, and those are face and throat movements which have no kind of meaning except as hangers for the tune to which I connect them. When I am angry, I sing "Happy Birthday to You" but the meaning is in the pitch, not the notes or mouth movements. So you see I have grown up with meaning, understanding and emotion divorced from the spoken word.

Then there are the people with Asperger's who when young speak precociously as if young adults, and who do not respond to other toddlers. So in a different way they also don't get that muddling-through experience that ordinary kids need.

Is there a real way to understand how internal language becomes communication? At this stage probably not. There are a lot of theories but precious little fact. This last year I was able to set myself up for a very simple experiment, though I have to admit my mother is the organiser here! To me, my spoken words are accurate (in my view that is!). That is, the sound leaving my lips does relate directly to what I visualise which is kind of different from my fluent typing, which is in a state of one remove from "reality". Of course what the observer hears me speak may not give him an accurate or useful message!

Nearly three years ago I started to have a mental reaction when I had a thought. This was an internal reaction which in a normal person would have resulted in a statement or question. My eyes would suddenly feel a little more focused, the face of the other person was suddenly brighter, her features clearer to me and, best of all, my throat and upper chest would jerk, and I would grunt. That gives the idea I was almost on the point of speaking, but that was actually not happening. Why was that?

Because I can't make connections spontaneously between gesture and vocalisation, the effort of even attempting to go on to use this to express a message-with-meaning was simply not even starting to happen. That is, it was not that it was too difficult, but that the bridge had never crossed the gorge of lost communication.

I had a brief, rather similar experience in 1992. In Chapter 17 of _Lucy's Story_ I wrote,

"I could hear the consonants at the end of words better, and for a short time some of my own terminal consonants were clearer. However in the short-term that was the only lurch that I made towards that elusive goal, conventional speech. There was one frustrating rent in the veil between me and real conversation. I had a brief and tantalising urge to speak. My sceptical mother did eventually believe me, because for some weeks I would walk towards her, my mouth would open slightly, and I would make a spontaneous short grunt in my throat. I felt my head lift and my muscles twitch in the mouth and temples. According to Jay's notes, I had never before looked at another person like that. After a while this social spark disappeared, to reappear in a couple of years, though rather diluted."

At that time, twenty years ago it was almost as if I were different from how I had been before, but was still in a world where the outside was not really linked to me.

However this new 2013 feeling was more of a timing issue than an urge to speak. It was as if for the first time the basic conversation mechanism had been activated, even though not all the gears and drive-belts were intact, particularly not sound. That is, the ones which drive speech were not operational. It had no mouth-relationship at all. The chest-thought-gasp was there, and the turn-to-another-person-twitch, but my hand-and-smile-signals were still dormant.

I think it is not a learned response but a chemical one. When I get my "down" cycles, which one way and another spread across about two thirds of any year, it then goes away. So it is useful as a way of seeing what I should have been like in another incarnation (that is a figure of speech, not a belief system!). (For a description of these cycles, see _2.8 - Feeling Sound, Seeing the Dark 1992_ and _3.8 - As the Colors Swirl 2011_ ).

Of course as a child I had been taught vocalisation in combination with body movement, but it remained unmeaning in my own mind.

I have learned to accept that most of you think in words which entwine with images, emotions and learned-thought-processes which are part of a social construct, but I just can't link it that way myself. When I write fiction, I make a design of blocks of description, and then patch these together. The blocks may involve moving and speaking characters, but a lot of that is knitted together from phrases and intertext memories.

Don't forget that even children's shows on television for me were not stories nor were puppets recognisable as pseudo people. So Kermit the Frog I could see as a cue and a name, but his actions were not a narrative until I was at least six years old, long after most kids tell stories of their own.

It may seem that this is unrelated to what I am about to describe, but from watching and listening to adults and children over the past forty years, there are two factors that impact on the issue known as "message passing" in the facilitation controversy. Firstly there is the lack of practice at an early age, and that is pretty general with people who have not developed speech, and also are inhibited from interaction and spontaneous practice of tracking their own body through their narrated articulation.

The other factor is more in the cause of my own lack of language as the prime driver of experience, and that cause is what we call "autism". Now, the problem in trying to pinpoint what is different about speech in people like me, whether we appear to vocalise normally or not, is that same old question - what is language?

In the past few years there has been more understanding that autism affects the whole brain and also the rest of the body in a feedback loop. That is why it is so interesting that the touch or, in an experienced dyad, the parallel presence of a companion, can work to short-circuit the apparently random language processing of some of us who do not have speech.

It is even more interesting to me that I still have a strong distaste for affectionate touch. That is because touch such as hugs and kisses ask for a reciprocal touch. Physical affection also gives me a reflection of emotion that is as bad as having to make eye contact in terms of a feeling of nausea and far worse in feeling agony on the very outermost layer of skin. But the kind of touch involved in typing with what is known as a "facilitator" (my partner) is different. I can feel the person following me, and being totally an extension of me, not an interloper.

This is relevant in discussing message passing as well as influence. It is obviously ridiculous to speak of a melding - that is well in the realm of the illogical - but I have worked out that normal speech-interaction involves anticipation.

The movements that my brain impulses want to send to my hand or arm have always been clearer to me when I am reaching for food. Now I think of it, recently that has happened when, as a more competent adult I am performing a task like pegging washing on the line. Now, that is interesting!

Until my new improved visual-cause-and-effect, I would just have hung the clothes crooked. Now suddenly my mind guides my hands in a most organised way, and I am looking at the outcome as it occurs.

When I try to point at letters for this kind of writing (i.e. "typing with a partner") I do "see" the text in my head as I plan it, as if sketching it with an imaginary power-point. So with a very structured environment, and someone sitting in the facilitator's position and not touching me, I can finger out the whole sentence.

Not only does the person have to let me say what I myself plan, but it is not a conversation! I can't see the way to swop from my output to manipulating it into a rebuttal or negotiation. However I really make all the movements before the other person follows with her eyes. That is part of being a partner. No, I can't see her eye-movements, have to be clear about that, but being deliberately monitored somehow is the same as my own understanding of the shirts on the line being very square compared with the crunched shape I used to make.

Language flowing in that way is now a matter of course. However having the output tagged to a practical activity, past event or specific request is different. That essentially is the difference between memory-in-space and memory-in-time. I can understand spoken instructions, but not actually convert them into actions without substantial and ongoing visual cues, at any rate the first or second time that I attempt to do something another person has described. It works that way in reverse too. If I have, or even have attempted to experience something, I need the other person to provide cues which are meaningful to both of us before I make a coherent combined image in speech if the concept is very simple, or in typing in the case of a longer sentence.

However occasionally I actually speak the word that is tagged to the concept in most people's minds. Now, so difficult is it for me to make that happen in typing that it seemed I needed to make a series of situations where I could compare or integrate the two ways of using language, not as a practical skill but as an experiment in which I am both researcher and subject.

**********

# PART FOUR - FROM LANGUAGE TO SPEECH (40 y.o.)

On Stage 'Brotherhood of the Wordless' Performance

State Library of Queensland (Australia) 2012

# 3.11 - Cards, Information and Anticipation 2013

Now taking the difference between cerebral palsy and autism into account, really there is some reason to assume that hands- and body-touch "typing" with much the same strategy with both groups would raise interest.

It is particularly so when one realised that not only are both enabled in this way - though as I have said with very different access arrangements in some cases - but that both groups have raised the same concerns about whether the "typer" or the "facilitator" or partner is producing the typed language.

In my case the problem would be because the usual way of testing for authorship is by asking questions to which the partner doesn't know the answer. Now, I have no difficulty with writing about opinions which are different from those of my companion. In _Appendix 2_ Grania describes my views on Hitler and disability which were very different from the way she would have written about "What is Normal". Also I have no problems with imaginative stuff.

When I am making things up or inventing a world for a story I am writing, sometimes I can feel the other person kind of anticipating me, but only a couple of letters ahead - not a full word and certainly not a thought. This is strange and is definitely not related to the meaning or intention of the word I am planning to type because I have the same sensation when a nonsense or obsessive word is about to gush from mind to finger. In fact I think there is a reason for this and this reason is embedded in human language.

I think this is some kind of physical manifestation of the kind of anticipation I mention when I write about conversations. It probably happens with everyone, but I notice that particular mode of anticipation in my partner because I lack the to-and-from relationship of conversational timing and the interplay of facial expression and body language in the other person. "Facilitation" therefore involves great self-control so that I don't take what in a sound-conversation would be a form of mirroring and invisible word-anticipation as if it were a prompt.

This is one of the components of problems with information exchange - but only one.

If I type with different partners in separate situations over a long period of time, I express similar personal emotions and will tell each person in simple terms subtle things about how I experience the world. I will also give identical points of view on various topics with each "facilitator". I also use the same vocabulary and tone once they have got to know me. That is, I express subjective information consistently among people who facilitate me regularly.

And yet when people expect me to describe, or even mention events that have happened in my presence, I can't do this in either of my limited memory-driven languages. The first of these is what limited speech-memory I have. Remember that my natural spoken words are driven by impulse and "feeling", not by what I know to be a fact.

The other memory-driven language is the screen of written words in my brain from which come the typing and pointing movements I am using to write this paragraph.

I have thought about this problem a lot, and I think it has something to do with a combination of brain-processing relating to my autism and that language practice which occurs in speaking children. This kind of descriptive language does not require formal training, but is innate, just requiring interaction to switch it on.

In me this difficulty is more than a problem in communication. I simply don't internalise concrete memories of places, things and events as if they were written words. So if I am typing, the person who is making certain I am pointing to the symbols I intend has no tension in my arm to lean against.

Therefore I think that this isn't so much a communication deficit on my part as it is a sorting-of-information glitch in the mysterious files of my brain. Conversely on the odd occasion I do suddenly pass on a snippet of practical info, it probably is not a new skill but also a glitch.

So if my partner sets up a task where I am to describe clear simple shapes, colours and numbers, this is not only incredibly difficult and even impossible for me to do, but some very specific things go wrong.

For example a pack of playing cards with the picture cards taken out gives two colours, the names of four shapes and ten numbers to spell out. Ah - easy-peasy - Not!

In fact it is weird. Take the colours. Sometimes I can mouth the words "red" or "black" appropriately. Now I recognise that when this happens it is not exactly a communication but an acknowledgement to myself that I had felt the colour in my mind. This is really a kind of synesthesia-lite (no, that's not a spelling mistake). This in fact is a more deep-seated kind of information processing than my usual method of looking and making a picture.

So if I actually felt (in my sense of the word) the black or red colour in my thoughts, that was good, and as words came to my mind I could speak "red" or "black". Even when I didn't speak it sometimes I could type it right, and sometimes not. Now, if I had spoken it first, I usually got it right when I typed it. This was because the hand on mine was kind of waiting for me. And - wow - even when I was not being touched, somehow sometimes my speaking the correct colour had the same effect! I still don't understand that, but hopefully soon I will.

And the really, really weird thing was that if I did get it right once without speaking - which was about half the time - the next trial was almost always a failure. This was true even with two simple colours, and also with the more complicated number and shape combos of course.

Now, why does this happen? I think it is a missing step, and it comes from a combination of my autism - where there is a history of misinterpreting information in terms of communication - and lack of childhood conversation practice.

Another issue may be the medium-range-memory-struggles in creating narrative, such as a journal. I know this comes with ASD and can also affect men and women with Asperger's. This is why teachers are encouraged to use prompts such as photographs and other information contributed by parents when structuring journaling tasks for able students with ASD.

Then I think there is a third reason for these problems. This is the way my mind and my social world don't mesh with the way that you other people experience your world as something to be described to someone else. That is, my brain seems to be hard-wired so that problem-solving, thought-processing and language just don't come together in the instant they should.

This problem is non-existent in the flow of my own imaginary writing which doesn't involve real facts because it is a skill which was derived from reading, from song lyrics, or from television which at the moment of viewing is set in time and place.

**********

# 4.1 - Outside My Skin, Outside My Orbit (Written 2013)

Now, one long-standing problem that I have, as do some other people I know who use this method of squeezing language out of their brains - i.e. "supported typing", "facilitated communication" or whatever you want to call it - is that we grew through our formative language-years without using speech, or possibly even internal language to track our own small or larger body movements.

This is the point where we come back to a paragraph which I also included in the first section of the book as a general look at how I experience life. It was originally written for this chapter. It is part of the explanation of the problems that I have with expressing factual information. When you re-read it, please think about the implications in the various descriptions of me that you have seen so far. Here goes!

Remember that my body and its "orbit" include my thoughts, my real emotions, and what I call my "feelings". These are not the same as what you people, i.e. neurotypicals, call "feelings" but are my carrying (i.e. internal) vibrations, flashes, visual-blocks, touch-horrors, smell-tickles and the cross-over that comes from them. As memory does impact on these, that also is a "feeling-trigger". However the world outside my skin and through which I move is not part of my orbit, and my memory of that world is an intellectual process which is independent of my language memory.

What do I mean by language memory? Here is an example of one of the ways I think it is formed in ordinary people. I have a lovely little video of my niece Kara at age two and a half. She is not only showing that putting a plastic cup over her dolly made the little pretend-person invisible. As she demonstrates it, Kara tells us what she is doing, and predicts that as she raises the mug we will see the doll again. As she lifts it up, she says with absolute certainty, "There she is!" (Yes, I know all about the Sally Anne test - look this up on the Internet if you haven't heard of it - and I do see the humour of this example!)

By this time Kara had been talking for some months, saying the names of toys that she liked, asking for food, getting grumpy when she couldn't get her own way and even saying what she was doing when she was running, dancing and so on. In my case at the age she was in this video, yes, I did have a very few words but they were simply echoes of what I heard, not communication.

After writing that description, I wanted to contrast Kara's development at two and a half with me as an adult. I went on to say that even now, at forty years old, if I stand on one leg and am asked what am I doing, I speak the word "hop" in my head. I then explained that this doesn't mean, "I am hopping". It kind of means, "This is a symbol for 'hopping' as an abstract idea". That is why as a rule I don't use language to describe real things outside my own "orbit".

I don't actually say the word "hop" with my mouth. When I had typed the last paragraph, my mother told me that if I am asked a question like that, not only do I appear not to answer it, but I usually just float away from the person speaking to me or I get confused and distressed. The funny thing is that occasionally if I do something like this - stand on one leg for example - and am in private with no one else around, I may speak the word "hop" or even "one leg" out loud because I am really relaxed and only playing mind-games with myself.

I also find that I often believe that I have really said something, but then discover that I have not. This happened even before I typed. That is odd because sad experience had shown me that I simply wasn't making that kind of declarative statement. Sorry about the pompous language, but I think that is the correct term.

Also I hadn't really distinguished between imaginary story-telling and this kind of assumed communication (i.e. the kind of statement I "felt" as if I had spoken out loud, even if I hadn't done so). Even today I sometimes don't realise I haven't spoken, or rather that the other person is not aware of what I "feel" as if I had said it. However I did find that all those university courses on literary studies and narrative, some of which involved fiction writing with reference to dialogue, gave me a slightly better theoretical perspective on this.

The reason for all this may be a combination of the kind of autism I have, and my lack of early comprehensible speech. I can only speculate about the autism stuff because "Autistic Spectrum Disorders" is a blanket term for those developmental disabilities which result in a certain pattern of behaviour, and there are many variations on this.

I thought I should explore this whole difficulty by making my own spoken words mean something to me - which they didn't as a rule - and then carry out the act. I needed to see whether my speaking an action before performing it would have any effect on my doing a practical task. The problem was that this speech had to avoid all internalised rote words, including the many memorised expressions I had acquired in previous attempts to teach me practical activities.

To avoid these problems with language-creation and their links with my autism-based-thought-processes, we needed to make a barrier that would allow me to speak simple, functional nouns and verbs, as well as an occasional preposition without starting up all these memory drives.

**********

At this time we were looking for a low tech substitute for electronic equipment. This is because Lucy has difficulties with devices which involve some kind of intuitive problem solving such as mouse-driven software and touch screens. In fact from the mid-1990s Lucy became even more dependent on her partner to set up the interaction and help her maintain her behaviour in any complex situation. This was because computers and other devices moved beyond a simple "on/off" switch which was a feature of the Canon Communicator ® and the battery operated typewriters which she had previously used.

Also Lucy has always been responsible for carrying any portable equipment herself (See illustration for Part One - Finding Words), which brings a risk of theft where a popular, mainstream device such as an I-Pad® is involved.

_At the same time as Lucy experienced the slight changes she talks about in_ 3.12 - Echoes, Images and Practical Stuff 2013 _, she also again started to read single words from her own typing, and although these were both inaccurate and indistinct, she was doing so spontaneously, This was unlike the various attempts we had made after Auditory Integration Therapy in 1992 where she needed to be cued._

_Because of this we were able to work in the way that Lucy describes in this part of the book. That is, the activities took advantage of_ very _small and occasional differences in her articulation. Where she generated words herself, I encouraged her to cue these by pointing at a letter board with her left hand. She held a pen in her right hand so she could sketch words on paper._

As she says later, her "writing" remains idiosyncratic, and sometimes illegible though she seems to be able to read most of what she produces. It is noticeable that she often "draws" the words rather than creating them phonetically. When she reads back from her own typing or from prepared texts, it is clear that she still does not intuitively know when she is creating consonants, and that she probably still cannot process many speech sounds. She also relies a lot on visual context in the environment rather than the actual word she has written or is reading aloud, to make sense of factual or practical cues.

So in the rest of Part Four of this book, you can see that Lucy does not use hand writing as the rest of us do, and that learning how to work with this may open up some unexpected avenues and take her into unexpected places. However this may take several years, and will definitely not go as planned!

**********

There are several different approaches to non-speech communication in developmental disabilities and and even a non-professional like me can see there is always some overlap.

_Readers may know of Soma Mukhopadhyay's Halo Program (_http://www.halo-soma.org _) and of her book_ Understanding Autism through Rapid Prompting Method _, which outlines her programme._

This book first gave us the idea of re-visiting the writing skills that Lucy had failed to develop in the first ten years of schooling, though we realise this is in a different context from that described in the Halo book.

**********

# 4.2 - Speech Driving Action 2012 (Written 2013)

Now as of the beginning of 2012 most of the time I could not physically follow written instructions, even though I could just about follow the theory of what I read silently. In fact it was only recently that I had reliably followed the directions on toilet icons (!), even though I could describe them accurately typing freehand. Also I would be devastated in some situations when other people either ignored written instructions themselves, or got them wrong, such as when the driver didn't follow road signs.

About the same time as beginning the structured food related activities involving hand-writing and spoken words which I talk about in _4.3 - Pots, Pans and Prompts 2012-2013_ , we had started with me reading aloud from prepared short sentences and then acting them out with my whole body. These all involved movement, and of course that involved prepositions. Sometimes the sentences also had gaps for me to fill in. Here are some examples

\- Crawl under the table

\- Put the book behind the box

\- Roll the ball towards the chair

\- etc., etc., just like thirty years ago!

But now I could attempt to read them out without being cued, and when I heard my own voice saying an approximation of the words I saw in front of me, I would then try to perform the action, once again without any gesture or prompt from another person. I must emphasise that this was an exercise for understanding a speech-driven purpose. It was not an attempt to acquire skills. These were already actions I could perform when I was told to do so.

As an experience this was all quite different from me being told to do something. I was now following my own voice. Sometimes there was a gap in the sentence that I had to fill in by typing. Basically we started with prepositions because I obviously understood their purpose as a part of speech, and also their theoretical role in directions, etc. However it was clear that I wasn't processing them typically.

I knew this because early in 1992, and at intervals ever since, we had worked on my reading aloud from the screen while I was typing. Up till now this had not been successful, even apart from my problems with making speech sounds and hearing my own sounds. One of the more interesting problems was that often, if there were a preposition in a sentence I would speak the correct part of speech, - i.e. one with the right grammatical function - but use the wrong word, often with an unrelated meaning and one which didn't even resemble the one I should have read aloud. For example, I might speak "away" in the place of "to" or "down" instead of "about".

In the event this simple, childish exercise did what it was intended to do. It made me think about how speech drives actions. So now I can see in my mind which parts of speech take the meaning form being a label to a creation of fact. These of course were English syntax.

We also used some nouns, adjectives and verbs that I had shown I sometimes could read out loud, and which I could usually utter spontaneously in a very quiet room, though often the consonants were very indistinct. Examples are "cup", "book", "table", "put", "red", "big", "walk (to)", etc.

And sometimes I would be asked to copy the whole short sentence using hand-writing, or to fill in one word with a pen after typing it. So now I have briefly transferred my thought to writing, then spoken the position I should move to, then moved myself in response to one or more words. That is Step One in this set of activities, a parody of most really toddler experience - and I was nearly forty. What is more, this still didn't translate into my understanding what my body was doing when moving.

You see, when I look at my hand when it is doing a job, it can be totally different-shaped at different times. For example, if I am full of too much junk food, the usual shape is distorted, but how do I explain the shape to you? It actually looks the same! The fingers are in the same place, and it is the same size, but in the way my mind feels it - which is what I call "feeling-sight" - it might as well not be part of me.

In any case, I suspect that my body image is a lot different from that of other people. That is because I don't pull myself against my muscles, ligaments and skin. They all simply are just there, even when I manage to make myself go through the motions that in other people are isometric exercise.

So issues like having a problem with visualising myself are more pronounced because I don't think I get proper feedback from my body. If you add to that the fact that I was feeling pain or discomfort in my skin from what other people find comfortable or which create an affectionate response as a baby, there is a whole lot of stuff which accounts for my brain not learning to see what my hand is doing.

In that case, as I grew up my brain also would not have made connections of cause and effect for hand movements. There were some things I did incredibly well, like spreading large amounts of Vegemite on a slice of bread. I can remember my total visual-feeling of the taste as the knife spread and the brown pattern moved squarely. So you see that the way I do things like Vegemite-spreading may be a bit different from how you do it. I was treating the Want-For-Completion as being without connection with what I can best describe as The-Movement-That-I-Have-To-Tie-Into-a-Chain-To-Get-There.

Of course this description of the Vegemite thing was how I did it as a childhood activity, but that was pretty much how things were until a few years ago in my late thirties. I don't know what triggered the change, and I suspect the difference is very slight, but now I somehow see my body and hand as a cause of what I am creating, not as a series of parts-of-me moving in a landscape.

That is a bit different form how I used to be, especially until I was about twenty. As I describe in Lucy's Story, then I really didn't use space like other people do. After Auditory Integration Training my vestibular and auditory system changed, though very slightly, and I could see in my memory what I had been experiencing. In the "New Me" I still got the feeling of my hand, body, feet, etc., as different components, but now they were joined together, and I did get lots more coordination.

So although now I already knew all this stuff about myself, playing these stupid, simple games as a forty year old adult, and taking into account my recently acquired slightly better sensory understanding was a source of deliberate thought - in that sense "deliberate" means "involving deliberation"!

That is, I felt basically annoyed about doing these movements, and I also found that I could not internalise the sequence. And, more importantly, I could not use words to pass on to my partner what I had just done with something, unless the artefact was both in my line of sight and also in that of my companion. This was almost like having to point, although instead of pointing I was typing the word as part of the exercise.

As I was describing this, I suddenly keyed in, "That is interesting!" You see, I have started to understand the theory of seeing someone take note of my pointing and gesturing, though I still hardly move my hands enough for the observer actually to interpret what I am indicating unless she is already looking, or unless she has modeled the movement. Really, until I typed the sentence about internalising the sequence without seeing the artefact in the line of sight of both myself and my companion, I had not thought so much about it. But now I wonder if there is a connection between the autistic problem of perspective taking, and that of "message passing" in "facilitated communication".

(Editor's note: As she has said, for a few weeks Lucy rolled balls, crawled under tables, moved books around, etc. Then we both ran out of patience! However it was clear that she was operating quite differently from even a few years previously.

I tried to find other things that we could organise relating to real life, using typed instructions as a prompt, preferably without me being present. For some of these activities, Lucy did what she did at that stage and walked home by herself. There she would attempt to follow the written direction. However it was difficult to find new activities that did not immediately become a ritual or which were not boring.

_Also Lucy began to find the whole thing too stressful so she sabotaged it by taking a very long time to walk home, sometimes disappearing on the way. Very scary for me! However the structured food activities described in_ 4.3 - Pots, Pans and Prompts 2012-2013 _were successful for Lucy, both as a very simple language activity and as a motivator. As she says in that section,_ "I thought I should explore this whole difficulty by making my own spoken words mean something to me and then carry out the act. I needed to see whether my speaking an action immediately before performing it would have any effect on my doing a practical task.")

Anyway on to the next topic! This exercise was a lot more fun. At this stage I have done it most days for the last eighteen months. It also involves my speech driving my actions, and also inhibiting those actions which do not derive from sensible spoken words. There are relatively few skills involved in the sense of problem solving and still a fairly limited vocabulary.

**********

# 4.3 - Pots, Pans and Prompts 2012-2013

One of the things that has happened recently in my late thirties is that, if I speak a noun, it is more likely to be accurate than it would have been previously. Also then I will sometimes carry out the action that relates to it. That is, these days the spoken word is not always just an echo or a ritualistic word (though it may be - this is completely unpredictable!). When I do this, that is when I speak and act out the word, the sensation I call "carrying the feeling" - those words again! - is quite different even from when I was thirty three in 2005, which is when I graduated from university - see the photo in _Meet the Author_ \- so I think that the change may have been due to some kind of neurological hardening since then.

Anyway my partner ("Jay") and I worked out that we should exploit this. We also needed something and in which I had a special interest. FOOD! Jay realised that when I was a kid the only skill I had acquired completely spontaneously - apart from raiding the fridge! - was making a sandwich.

Now this time I didn't generate any language myself - though internally there were lots of emotions that in the rest of you would have been swear words.

However I didn't make too much of a fuss because this activity involved food, which is usually a kind of mind-smoother for me. My mother carefully listed the steps to cooking the food.

\- First the ingredients had to fit the diet I was using at the time (Check out "Gut and Psychology Syndrome (GAPS) on-line).

\- Secondly there were to be no judgements such as, "when the water boils", "stir till smooth", etc.

\- Thirdly the whole thing was a language exercise in the sense that it was an exercise in reading consistently, making decisions and carrying through on activities from words I spoke aloud.

\- Fourthly these words were from another person's written prompt - that is she decided and typed up the list of steps in advance and did not speak them.

\- Fifthly I was going to use the absolutely new skill I had attempted a few times in the preposition exercise, hand-writing the words I was going to speak before my mouth attempted it. Most interesting!

Dear Mum AKA "Jay" thought I would copy the words in script if she used the same script font as used in Victorian schools because I had lots of lessons in hand-writing in Special School. Not a good idea! Firstly, I don't think in script. I think in typed words. Secondly I never connected that kind of writing, i.e. script, to intelligent intentions because of it being taught as an exercise. To do this new exercise, I needed to use the symbol to which I point with meaning. So, although the recipes are always in script, I deliberately draw capitals because that is what is on keyboards. Would it have been different if this kind of writing, typing and cooking had been part of a pre-pubescent lesson plan? Probably, but who knows!

Anyway, she wrote each step on a separate line, all there one below the other on the page so I could follow one by one. Then I would write the first line, and she would insist that I speak it aloud without her voice saying the words first. For example I would try to say, "Get out the chopping board". Then I would have to do what I had thought-read. That is a completely different set of cues from hearing speech from another person, and much more immediate than silent reading which for me is in a completely dimension, much more like when I type from my imaginary screen.

Now, "thought-read" is not exactly what I mean. I will try to explain. I think in words which are written, but it is vocalised words which are the driving force when I have to get a result. This is different from my obsessional and comfort-based movements, which are purely good in the sense that they are without logical thought. If when I am washing up by myself, I put a plate in the washing-up water, there is a kind of nagging thought that only faintly echoes an instruction. Experience-thought has shown me that the word being actually spoken by me is a driver for action (thank you Luria - an oldie but a goodie - if you don't know about him, do an Internet search). This seemed a nice simple way to set this kind of thing up.

As I worked through the list, I wrote each sentence, more or less read the words out loud, and then performed the actions. There is a short example at "2012 Typical recipe" in the _Picture Gallery_ of this book.

Now, this wasn't as simple as it sounds, and was interesting, not because of what I understood, but because of what I got wrong. For example I could read a word aloud one day, but couldn't read the same word - even if I had known and spoken it for years - the next. Sometimes I would read a word with a similar meaning in the place of a word I had written, for example "chop" for "slice". Sometimes there was an association, for example speaking "stove" for "hotplate" It was kind of weird, because I could actually see the the difference in what I was doing!

\- So now my mother types up a kind of recipe each night.

\- I follow this, line by line by writing-and-speaking each word individually as I copy it from the "recipe" using pen and paper

\- I then speak - that is I read out loud - each one line step or very short stage before doing that single step of the task which is one I can already do.

For example, if the next line is to be, "Chop up tomato", I have to read and speak it. Then I do it.

But I am not allowed to move on to the next action of putting it in the saucepan until I have gone back to the written list of steps, and written and spoken what came after what I have just done.

My mother estimates that over eighteen months we have done this at least 300 times.

To recap,

\- I am not learning to cook that dish.

\- I am not using my own internal words.

\- I am being steered into a language exercise.

\- It uses simple, familiar, practical nouns, prepositions and a small selection of verbs.

\- The words are nearly all short which is to allow for my problems with speaking more than two syllables at the most.

\- The sentences are usually all in single actions, so there isn't much of a sequencing problem

\- I do each step before writing the next line.

This exploits the many, many writing lessons I had been given at the Autistic Centre and the Special School. But much more importantly it _exploits the problem_ I had with using hand writing in the way I had been taught. This problem was that I had never really made the connection between my own attempts at handwriting and language. So now in this very structured exercise all of these words were generated without my internal chaotic hard-drive being started up. My memory is not involved - in fact it is disconnected!

So when I read each isolated word and then each group of words out loud, it is like me telling myself what to do. In other words, I am giving myself a verbal prompt.

Another very important thing this exercise did is show me what I still can't do - though that doesn't mean it won't happen later because things are still changing. For example in the past year I have made the jump to not bringing in clothes from the washing line if they are still damp. I can't explain why until last year this was a problem, but in my mind it ran something along the lines of, "I put them out, now I bring them in, and it doesn't matter that they were there for a purpose." I didn't really feel the breakthrough - it somehow came with the new cause-and-effect feeling. However I still can't make judgements like realising exactly when water is boiling or when vegetables are ready to eat.

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# 4.4 - Linking Things With Thought 2013

As I have said, the way I was taught writing in various schools was in the same way that ordinary kids learn. This is why, apart from some copying, I was never able to internalise it as language, except for a few words in the structured programme at the Autistic Centre. However I could read and understand other people's hand-writing.

Let's do this the other way round. In "The Chapter" that I wrote in 1992, I described my learning to read without anyone knowing about it.

"To return to my childhood, reading instruction at the Centre was also infuriating because the words and concepts that I had been able to read for years were not translatable then into spoken words or spontaneous action. The requirement was that I learn and speak words that I had been able to read for the whole of my remembered life. The words on Sesame Street are one of my first memories. For indirect learning there had been a stack of magazines and newspapers all over our chaotic home. The girls had been my instructors in the primary school curriculum, though without realising it. They had sat at the kitchen table making heavy weather of the readers sent home from school, while I flapped and cooed with delight that I could do what they were trying to learn. I could link unlikely shapes like words to things and actions, without the realisation that these symbols are a representation of the same concept expressed in speech. The whole spread of language became available to me this way. Speech remained a loving but non-urgent intrusion." This is expanded in _Lucy's Story_ , p. 60-62.

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When I was at High School I exchanged a lot of letters with Australian author John Marsden, although he did not meet me for some years after that. So in November 1991 when I was nineteen in a letter he asked,

"... Do you write with your hand at all? If not, why not?"

I replied, "I cannot write with sense of thought, and that is something I do not understand."

And, by what seemed like return of post, another bone to gnaw on:

Dear Lucy,

I'm puzzled by the last sentence of your letter, 'I cannot write with sense of thought'. What does that mean? That you can't put into words the thoughts you have? Or your writing lacks an intellectual basis?

How come you don't use a pen? Do you use a knife and fork? Do you play a musical instrument? What I'm getting at is, is your not using a pen something to do with co-ordination and manipulation skills, or is it something else?

That must have been too hard to answer as I don't seem to have followed up!

**********

Two months earlier in September 1991 I had written to Michael McCarthy, "Before this I thought that all words I read were more ideograms than phonetic". ( _Lucy's Story_ p. 224)

Even now in 2013, more than twenty years after Auditory Integration Training, in drafting this section I wrote, "writing (by hand) is drawing a total shape. That is why, even though I can kind of sound or mouth some of the letters when I am cued, they really don't feel in my brain as if they are "actual-tickles-music-tones". The way I can't build consistently on each sound is something to do with memory. Would it have been different with early structured teaching? I don't know, but my auditory processing and memory would still have been a factor to some extent.

For me handwriting has the same relationship to speaking as "typing-from-reading-the-screen" has to putting a jigsaw puzzle together. When the word I write by hand is automatic, I can hear it in my mind. That is why I am puzzled that sometimes I can't even spell words that previously I have written fluently.

The way that I see my hand when I try to write is the same way I read the "screen" in my head. That is, it drifts in more than two dimensions in a box in my head. Even though the point of the pen is totally on one plane, it is almost as if I am producing a multi-dimensional diagram. I haven't thought about it that way before!

Handwriting is as different from producing words on a keyboard as reading word-by-word is from speed reading. When I type without any touch on my body or even on my leg, I still can't see the depth of my reach. That is different from touch even when only my body or neck is touched.

I realise that the idea of using handwriting is both to drive what little practical speech I have, and to substitute for a tablet because it involved a cross-sensory memory-activity. Of course I still don't use writing as if I had done it for many years, and also I apply it in two different ways.

One is by sketching the shape of words I have internalised. Up till now I have used the word "Vegemite" as an example, but due to food intolerance I can't eat it now. So I will deliberately substitute "apple". That is, I think the word "apple" as a shape, not a series of letters. Funnily I don't always do so accurately. The more written words I internalise the more I get wrong. Most of you have a thumb-drive size memory and a working computer to match, but I have a five and a quarter inch floppy disk and in some ways an Apple II type of memory. So when I am not copying, my other method of creating words is by making the finger of my left hand touch that word on a letter board, and then to write the letters one by one on paper as I point to each.

The way I think when writing the recipes by copying letters is different from how I think when pointing at a board and writing each letter as I point at it. Writing when pointing is more like "screen-reading" in badly matched spectacles. That is my hand is my pointer instead of my eye-thought and that is different again from typing. Most difficult to explain! I am indebted to my mother (She-Who-I-Call-"Jay") for making me rework that explanation several times. This is probably as clear as it will get. Good luck to the reader!

At the other extreme is "writing" obsessional words in the same way I typed them when I was a child (See the Preface, _Hi! It's Lucy Here!_ ), though the exercises I am describing exploit that rather dubious skill. Anyway now I know that is why I can't think and write. It is my not-thought-movement. Though I know that if I had been made to use writing early as real language, particularly in childhood, this might have been better.

Think back to 3.12 _Echoes, Images and Practical Stuff 2013_ , where I wrote, "When I sing, I can hear the melody but only approximate the words that go with it, and those are face and throat movements which have no kind of meaning except as hangers for the tune to which I connect them. When I am angry, I sing "Happy Birthday to you" but the meaning is in the pitch, not the notes or mouth movements. So you see I have grown up with meaning, understanding and emotion divorced from the spoken word."

So how did this link back to intelligent language use and twenty-five years of one-fingered typing? The problem I so obviously had with the split between "things" and "thought" was what I needed to look at. Thinking back to the cooking exercise I am wondering is it possible that driving-of-speech is _part_ of movement. That is what I "feel" and it is true when my voice is doing learned words (i.e. those that I have been taught to speak) and when I am reading from what has been written down, but not with my memory-reflected-feeling-words because these don't link with movement. Also the hand I see when doing jobs carries meaning, not the same as when I am making twiddle-gestures.

The way I write the steps in cooking is interesting to me because two things happen when I write words with a pen. One is that "screen reading" in my head is kind of wiped. The other thing I think that the stage of following a script is not over soon because that makes me die-back the whirling thought of do-Do-DO - and that is interesting too because I didn't realise that was happening until I wrote this sentence. So now we know why for a very long time I will still need a script sometimes.

It was obvious that using writing - even my peculiar icon-styled word-drawings - could both separate the cross-over and link the two together. Here technology would be more of a hindrance than a help. Anyway, in a kind of uncoordinated way, I had all the components of a communication app for a tablet, and without the problem that I always have with anything which involves intuitive movement, such as a mouse or a touch screen. As my mother pointed out,

\- an alphabet board is just a substitute for a keyboard,

\- my mouth could make some words (voice output) and

\- if I could "write" down the letters to which I pointed, a piece of paper could act as a screen.

What she didn't say to me was that she hoped that in doing this I might gain some better understanding of my odd way of interpreting language.

So each morning after breakfast - this is not advisable on an empty stomach as I find it very, very stressful - I am firmly directed to an alphabet board to my left and a notebook - the paper kind - and pen, conveniently in reach of my right hand. The horror of expressing real decisions in my own words is about to descend.

I am about to create a hand-written shopping list, then follow my own cues around our most irritating supermarket, and then walk the resultant bag home, which is part of increasing shoulder strength. In both applications I am still drawing the word. That is the speech sounds you chattering conversationalists make are not a direct clue to the letters in my head. There is a distinct interruption-to-flow each time while I work it out.

My Revolting Mother (that is a Title of Esteem) can then indulge her theatrical instincts, point at things about the kitchen, wave empty packages around and occasionally describe something just to confuse me such as asking me what is round and bright red (tomato), interspersed with a few Auslan signs, particularly one she had to invent for "broccoli" because for some reason the Australian deaf community has no dedicated sign for her favourite vegetable.

In other words, this time I am not reading each word I am to write. I am creating them myself, sometimes by speech before pointing at the letters on the board and copying each letter to form the word.

So for me hand-writing these shopping lists is different from copying-and-speaking the recipes. It is all nouns, and they come from a mix of dictation and empty packs, fruit skins, etc., my own thought of what we need, my internal experiencing of what I want, memory, my own speech when asked if we need anything else, and my automatic expectation For example I always put in "bananas" unless I am shown very firmly that we have some

The way I go around the supermarket really is not quite like other people. Of course earlier as a child I had just grabbed food from the shelf chaotically. As an adult I had always been in the habit of either drifting from favourite food to colourful display, not to select but to absorb the sensory thrill in the whole feeling-memory which is partly in how my skin and smell-sense drive my eye-direction. To follow a list I had been given, or which was written by someone else even in consultation with me was so boring and unmeaning.

But now having spoken the word and then written it, and thus having it across two separate systems, to some extent I was balanced precariously with a foot on each side of a chasm where spiked dragons snapped at my derriere - don't you love that image? I do!

Although it may look the same to other people, to me reading the food words that I have written from these cues is different from trying to read the words as I type them on the computer, and also different from how I read from the typed recipes. So with the notebook that I write the list in from pointing at the "keys", I can be ready to transfer the word back to a thing.

As I walk into the supermarket, I hold the notebook in one hand and put my arm through the basket handle. So I can use the pen to cross out each item as I decide to find it - and before I walk to the shelf. This annoys my mother, who sees that as the wrong way round, that is I should get the "thing" first before crossing it off the list. However it is the thought, not the thing or even my movement towards it that I can register in my mind. ( _I ("Jay") have now incorporated this order into any cuing I may do - there are some battles I know that I can't win!_ )

Now I can walk round the shop and get what I have chosen to write down. But I can't go through the checkouts, wait and pay. Standing near the barrage of electronic sound from the scanners and the till, and also the fridge noises with the impulse-buy-drinks is too painful. So I gallop past them at reasonable speed.

So once again this is an exploration of language, not a fully independent activity.

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# 4.5 - Experiment STILL in Progress

That's what I meant when I said, "I needed to make a series of situations where I could compare or could integrate the two ways of using language (i.e. spoken and typed), not as a practical skill but as an experiment in which I am both researcher and subject."

The word "experiment" means creating an understanding in my own mind of what I can do, and of what I can't do that ordinary people can so that by describing it to myself in written language I begin to learn the difference between myself and typical people.

Don't forget that the various tests and treatments are designed to show this difference from the point of view of the therapist, and after all the average Muggle is pretty confused when faced with a flying Vauxhall - no matter what the colour.

Anyway, thanks to the Maze Designer from the Rat \- this has been a lot of work for her.

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# Appendix 1 - Picture Gallery

_Pictures are roughly in chronological order._

1987 This is the way I used to type in when it was a new experience. ( _Battery typewriter_ ) _(Above)_

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1987 A good way with a bit of practice, especially if the helper leant against my arm ( _Canon Communicator - tape with printed words on right_ ) _(Above)_

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1987 I found this terribly difficult at first. She braced her arm against mine to give me rigidity _(Above)_

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1987 onwards. This gave me the self control I needed to produce good work. ( _Used this right through school and even now with new partners_ ) _(Above)_

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Early 1988 - Used these positions to prepare to attempt typing without being touched _(Above)_

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1998 This was dreadfully difficult and in 1988 I was not ready for it yet". _(Above)_

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1989 Newspaper Clippings _(Above)_

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1989 High School Homework _(Above)_

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1990 With facilitator Pauline listening to teacher _(Above)_

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1990 Using Canon in meeting _(Above)_

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1991 "Facilitated" to stand still by regular school typing partner Grania _(Above)_

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1991-onwards Shoulder support for writing _(Above)_ ( _Lucy's Story_ p. 207)

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1991-onwards - Shoulder support interactive _(Above)_

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1991-onwards _(Above)_

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1991- onwards _(Above)_

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1991-onwards _(Above)_

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1991 onwards - Tickling to increase concentration _(Above)_

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1991 onwards - Tickling to increase concentration _(Above)_

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1991-onwards _(Above)_

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1991-onwards _(Above)_

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1993 Drawing of People _(Above)_

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2006 Sound sensitivity & auditory processing problems _(Above)_

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2007 Noisy environment (30 people, train, air con) _(Above)_

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2008 Writing song for a cabaret _(Above)_

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2009 University of Queensland Research _(Above)_

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2011 Poetry writing in chatty group _(Above)_

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2011 Discussing facilitator role _(Above)_

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2011 Same conversation needing pressure when tired _(Above)_

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2012 Typical recipe _4.3 - Pots, Pans and Prompts_ _(Above)_

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2012 Completed written recipe after each step has been completed _(Above)_

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2012 Copying cooking steps from list _(Above)_

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2012 Speaking written words for actions _(Above)_

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2012 Following own short spoken instruction _(Above)_

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2012 Writing shopping list, pointing with own left hand _(Above)_

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2013 Writing short statement, pointing at letter board propped for left hand access (Tiring after about five minutes) _(Above)_

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# Appendix 2 - School Scenarios - Enter the Heroes - Grania 1988

February 1988 ( _Lucy's Story_. p. 125)

One day I was delivered to Deal (Communication Centre), where I found Rosie, dark straight hair swinging around her pink cheeks, and a slender, suspiciously golden-blonde young woman seated in the room where I had come for my instruction sessions the year before. This young woman was Jaime, the aide who the Education Department had appointed to come to classes with me.'

I then took account of a broad, tall figure in a dress and sensible shoes, topped by untidy blonde-grey hair above a flushed face with large eyes and strong features

"This is Mrs. Lohning, Lucy," said Rosie.

Mrs. Lohning was the Integration Teacher who would be responsible for mediating between me and the rest of the school. Her timetable symbol was LO. LO was to be the constant during my time at High School, bouncing along the corridors looking for me when I went astray, trailing after me in the grounds at lunchtime, or sailing ahead in the crowds between classes. I could follow this landmark with confidence, and rely on it for comfort and love.

First let's hear what Grania (LO) had to say about meeting me.

**Interview with Grania Lohning 11 June 1991** for inclusion in _Communication, Competence and Interaction_ Project for Year 12 Assessment ( _Lucy used a Canon Communicator held by "Jay" \- (see Picture Gallery) - Capitals represent Canon Communicator Tape_.)

_Lucy_ _:_ I WANT TO ASK YOU WHAT YOU THOUGHT WHEN YOU SAW ME AT SPECIAL SCHOOL _._

_Grania_ _:_ _I picked you up at Special School to take you to the second appointment we had with Rosie. My first thought of what I could read on your face was reprieve and hope, and I think pleasure at coming with me and Jaime down to Rosie's, which was where we were going at the time. But certainly "reprieve" was the thought that went through my head (at the time)._

_Lucy_ _:_ YES, BUT WHAT IMPRESSION OF ME DID YOU GET. THIS IS THE CRUX OF THE WHOLE PROJECT

_Grania_ _:_ _Well my first impression was at Deal (the week before), and Jaime and I were in the kitchen. I had no idea about autism, but I knew you didn't speak, and this young lady in a T-shirt and jeans came into the kitchen, helped herself to a soft drink from the fridge, gulped it down and, belched loudly._

I thought to myself, "I wonder if that's Lucy". It turned out that you were, because you turned round, went back to Rosie, and we were more formally introduced later. I was not put off by first impressions, but it was fairly obvious, and still is, that your social graces are vastly lacking! However I liked what I saw.

You have got to bear in mind that from the end of the previous year, I had read things about you that a doctor and a psychologist had written, and things that had come from your Special School. Certainly you were not the person I thought I was going to meet. I was pleasantly surprised.

Sure you had a disability, but I didn't feel anything like as put off as I thought I might have felt. Once I saw you and put a face to what I had read, I began to wonder what a lot of what I had read was all about. I began to look forward to working with you.

_Lucy_ _:_ COULD YOU HAVE MADE ME CONFORM WITHOUT TYPING? CAN YOU IMAGINE WORKING WITH ME WITHOUT COMMUNICATION?

_Grania_ _:_ _I think it would be extremely difficult if not impossible. Your frustration levels would have been so high that they would have made your behaviours so much more difficult for you, for me, for the class teachers, for the classes to cope with. I really feel that being able to communicate in that way has saved you from far more troubles than you have had._

In retrospect there were probably things I might have done differently, but you were the first autistic person I had come across. I don't think I had even heard of autism before you came. I certainly had no idea of what the implications were. I would like to thank you for being such a good person to work with in the last four years. I've enjoyed it. I don't want to lose contact. The other thing I want to ask you, when we first went to work with Rosie, I kept out of it a bit. Jaime who was going to be in the classroom with you was the one to work with you and Rosie in the little room there.

So I didn't have any experience at communicating with you until the first time Jaime was away sick. You and I went into the class, and it worked!

_In that class you convinced me thoroughly. It was an English class. The job in hand was some reading with some comprehension questions at the end._ _(Editor's Note: Happy cooing noises from Lucy at this point in the interview!)._ _I didn't know how fast you read as I had not been in the classroom with you before. So I was saying, "Go back and read it properly!"_

I felt it was a sop to me that the finger was going down the page. I said, "You haven't read it. Let's try and answer the questions and prove the point!" It was only after you had answered the questions quite fully and correctly, I had the chance to read the four or five pages of the text.

So you see why any doubts I had went the very first time we tried to work together, and that was our first experience together.

Then not very long after that I was with you in an English class taken by a student-teacher. Apparently in that particular English period each week they used a class set of short plays. This week they had to read through one called, "What's Normal?" "Jay" has probably seen the piece of writing that you did. The class had to answer questions. Then the student-teacher asked them to write a paragraph themselves with the title, "What's Normal?". The other Year Nine kids struggled to produce one or two sentences. Lucy poured her heart out.

She (Lucy) talked about Hitler trying to make everyone the same and why should we expect everyone to be the same. She said, "normal" should include a wider variation of differences. I would never have thought of including Hitler. I had my ideas, and Lucy had hers. Mine were very different from Lucy's that came out. After this happened, I had no doubts.

I do admit that very early in the piece I had to force myself to keep an open mind because I did not feel I knew enough about it (i.e. using a keyboard with support). However while I was waiting at Deal, Anne McDonald and I had a conversation. I think that gave me such a lift that I then felt fine about communicating in a different way. OK, Anne had cerebral palsy, and Lucy, you have autism, but I then felt comfortable. Those three experiences were enough to make me feel relaxed about the whole thing.

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# Appendix 3 - School Scenarios - The Determined and the Brave - Jaime 1988

Now we jump to the end of 1988 when "Jaime" and I had worked together for a year.

In the second half of Year Nine there was a series of tests for science for which we had to learn. Suddenly I had a problem. I could absorb facts and somehow spit them out many weeks later, but I had problems with learning on demand. This is part of how my brain seems to work. I find as an adult that I have to choose university subjects which allow for this quirk.

At that stage I had no idea that I would continue to Year 12. Funding for an aide had to be applied for on an annual basis. There was no precedent for someone like me going on after Year 10, and there were no procedures for a student working with a communication partner writing the Year 12 examination which would give me access to the university system. However I was starting to think about following the same trail to university as my sister Jenny had, and said as much to Jaime, who paled at the thought of another three years. This pallor was accentuated by her new hair colour, which was a bright green. This stunned the staff room, but benefited me because beside her I was relatively inconspicuous, though it was a pretty near thing. ( _Editor's note: This was 1988 in a very conservative Melbourne suburb, and the average age of the people in that staff room was mid-forties. You can imagine!_ )

As the year ended I found that funding was available for 1989, but that I would have to learn to work with someone new. Jaime was leaving to work in the hospitality trade. At the Principal's request she wrote a detailed description of how it had been working with me:

Here are some extracts from what she said.

The thing you will probably find most difficult to learn is to communicate with Lu. It may take about four weeks working every day to be successful at helping her to type, or it may take longer. Don't worry. It is really important that you do realise that achieving working communication with Lucy may take longer than you had hoped.

Lucy often also doesn't look at you while she's talking (i.e. using her voice) to you, or vice versa (while you are talking to her). This is autistic behaviour and something she can't overcome. She does try her hardest to maintain eye contact and succeeds to a certain extent. Don't be put off by it. She may appear not to be listening to you, but she is – even if she gives no indication of having heard you.

Lucy displays some rather disconcerting behaviours at times. In the beginning I found it very difficult to associate the Lucy I saw coming through her work with the Lucy I saw doing 'strange' things.

On occasion she will sing. If it's "Happy Birthday", Tie Me Kangaroo Down" or "He's got the whole world in His hands" and she bends her fingers backwards, you know that she is upset or angry about something. This happens especially when her normal routine is disrupted in a severe way, or if she is "talked across". If she is very upset, angry or worried, then she may also bite her hands. Saying "It's OK Lucy, don't get upset, there's no need to!" are all right, so long as you don't say it in a pitying, condescending manner.

If she sings in class, which is seldom, just a stern look or a shake of your head is often enough. Giggling and clapping generally means that she is pleased about something (often an abstract idea, not necessarily something that you notice at the time).When the teacher is asking questions of the class, make sure you include Lucy. Ask her to type out an answer which can be read to the teacher.

Lastly while working in the classroom situation with Lucy, it is essential for you to close out the rest of the class and try not to get distracted. Let them know that you are not there to talk to them – you, Lucy's aide-facilitator, are not really there at all.

I encourage her to get the books she will need out herself. I often say, "We have History and Maths now, in Rooms 52 and 15. So we need your RED History folder and your text book, and for Maths we need your YELLOW folder, green Maths book and your calculator. You get them out, Lucy."

She is still not very sure which books are which, so I will point them out, but be sure to let her get them. This takes time, and often you are tempted to help. Try not to. She will learn faster if she has to do it herself. All her folders and text books are colour-coded, and she takes her typewriter to every class bar Mathematics.

Lucy requires total, concentrated attention to be paid to her during all classes. She uses a keyboard both for written work and for answering questions for which other students use speech. Support of her right arm is required at all times as this enables her to type faster with less hesitation.

If a novel is being read in class or any other text book is being used, Lucy can't find the page by herself. Try having a copy each. Open your book to the appropriate page, explaining as you turn the pages how you find the right one. Lucy will follow you by looking at the page numbers.

Lucy reads extremely quickly and you may be in doubt as to whether she has actually read the page. She often runs her finger down the middle of the page. This means she has read it and taken it in. If clarifying a particular passage, she will run her finger along under the line. The actual line she is reading is two lines up from her fingers.

In English her stories are wonderfully imaginative, though you may find her phrasing rather strange at first, and may be tempted to try and correct her wording. Don't. Her style of writing is unique. She writes from her own feelings and experiences, putting herself in the place of the character she is writing about.

When in class, if you detect a mistake in Lucy's work, first give her the opportunity to finish. Then ask her to re-read the work. She can often see the mistake when she makes it, but can't change it in mid-stream.

If there is an exercise in word-finding, Lucy can point to the appropriate word for the question, but sometimes requires support on her hand if the words are close together or if she's not too sure.

In practical classes (including Science pracs) the important thing to remember that instructions must only be given by one person at a time. Also you must go through each step singly demonstrating as you go. Lucy then performs that one step. If more than one person tries to instruct Lucy at a time, she may get confused and become stressed. Then occasionally she will make a most frightening, unusual sound between a scream and a horse's whinny.

As far as I am concerned this is not acceptable behaviour - not under any circumstances. However this happens very rarely. Most often she is more than willing to attempt anything the others are doing. This includes Physical Education. Her coordination, fitness and flexibility are not very good, but she tries very hard to do what the others are doing.

Mathematics is a special case. It is essential to take a note pad and pen (for you to write according to Lucy's instructions), a calculator (which can double as a number board) and her communication-keyboard to class. There is also a card of words and signs in the side pocket of her diary which Lucy uses explain how you should write down an equation for her. (This card grew more complex each year.)

Set them out on the desk between you. Never assume she wants to use a certain sign. Make her show you, e.g. powers 2, 3 etc., "over the line", Negative - , Positive +, etc.

I (Jaime) tried very hard to understand Lucy's mathematical jargon, but for me it never seemed to gel. As I don't understand even the basics of Mathematics, her workings and answers made no sense to me, and so I couldn't write them down.

After all you have to have a basic comprehension of the subject so you can ask Lucy the correct steps to follow when writing for her. At this level you have to know the right questions to ask to work through a problem.

Now as I could not do this, Lucy became frustrated and upset. Communication failed even more. She requested that I not go with her to Mathematics, and that "someone who understood what she was doing" come instead. Fortunately Grania Lohning was competent in Mathematics and began to accompany her instead.

However on the occasions when Grania was not available, I had to go. Needless to say, Lucy didn't get much done in those classes. I began to get so uptight about these classes that I would often be in tears or close to it.

Jaime also wrote, _"I have found that someone of my age group lacks the maturity, concentration and experience to work with a person of almost the same age. Therefore I think someone older (and perhaps wiser?) would be more successful than I have been."_

Working with Jaime put to rest any idea that there was some kind of emotional prerequisite to typing with support. Jaime and I liked each other, and that year we spent a lot of time in each other's company, but for both of us working together was a skill we each had to learn. It was not an easy partnership and we were both aware of this.

One thing that saved us both was that her previous student had been a small child with cerebral palsy, so she was trained to be responsive to abnormal movements. If she had not been so determined and so brave, I think that my first term at High School would have been my last.

So in so many ways she gave me a farewell gift more valuable than she knew. She ended her description by saying to any future partner I might have, _"Whatever you do, please persist. I feel I have been instrumental in breaking down the walls of Lucy's prison, but it is going to take someone with a great deal of persistence, patience, strength and genuine understanding to help this situation this situation to work to its fullest capacity."_

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# Appendix 4 - School Scenarios - Mapping the Classroom with Pauline (Sue) 1989

Year 10 brought two new aides to work with me, Pauline and "Helga", both plump and mature. Helga dressed fairly conservatively. Pauline bounced around in gorgeously cheerful smock-like dresses, and spoke in a deepish voice which I understood as well as I did Grania. With them I matured and made progress.

"Helga" was practical, steering me firmly through ceramics, and things like a stint of work experience at a university cafeteria, but it was Pauline who took the brunt of my angers and enthusiasm. The two of them and Grania continued to struggle with my autism as I wandered around the school, making noises, giggling and rocking sideways from foot to foot.

So I dictated graphs and pie charts to Grania, and geography diagrams and contour coordinates to Pauline, while driving everyone nuts (because) I understood exactly what I should be doing, but lacked the co-ordination to draw up the exercises, which had to be done by hand to my instructions. I explained the layout so vaguely that most people sooner or later teasingly threatened to throttle me. As a result, nowadays whenever I want to say that I am not being deliberately obstructive, my response is automatic.

'No w'ing neck!' I squeak. This is an apology for being so inconvenient, not fear of an irate companion going suddenly berserk. Speech remains a collection of responsive memories, not communication.

Four years later, after I had left High School, I was to receive a parcel. I saw the Deakin University logo and a computer-generated delivery label which said _HUL 101 — Literary Studies — Narrative Situations A_. When I unwrapped it, words flashed at me briefly: _"This course is based on a recognition that story-telling, in many and varied forms, is one of the most fundamental ways in which individuals and communities try to make sense of their experience."_

Thanks to the skills I was to learn, you now can meet Pauline (thinly disguised as "Sue") and "Lisa" AKA Lucy, in a Year 10 Geography class as they appear in the short story _Dragons of Bass Strait_ in my book of short stories, _Talking of Macbeth_. This story was originally written as part of my Honours thesis to illustrate what I considered to be the function of direct speech in narrative. In the original you will find this disclaimer.

"It should be made clear that, although the internal thoughts of this character may be considered to parallel mine, none of the events in these short stories ever took place. During the years that I was enrolled in the secondary schooling system, I was aware that staff had to consciously adapt to my presence. This narrative is an imaginary account of what might have happened if they had failed to do so." And The Teacher is also completely imaginary!

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**Extract from "Dragons of Bass Strait"** **in** _Talking of Macbeth_ (This story was written in 1999)

The school buildings sprawled over an enormous mound flanked by playing fields and abutting a noisy shopping centre. Beyond that ran a grey road, and beyond that again several square miles of houses. The first day of the school term the students had swarmed through the gate and scattered themselves into the maze of waiting classrooms.

At the back of Room 15, Lisa sketched in her mind the opening paragraphs of a description of her school day. She thought about how she would have spoken about coming into that room. Somehow the speech-thought was more like a recital than a monologue, perhaps because Lisa saw language better than she heard it. As a result she read her musings as if from a screen.

\- "The person that I am came through the creaking sliding door, the heavy timber reluctant under my hand as the worn wheels bumped along the oilless runners. I paused as eyes raised, pair by pair, from the identical books on each identical desk. Some eyes were blue in freckled faces, and some were blue in Mediterranean sockets, offset by hair a little darker than that of the blue-eyed, mouse-blonde girl who had been ash-blonde the previous week and next week might well be black-haired in an awful travesty of Disney's Snow White. The brown and black eyes were more general but less striking. Closing my own mind against this barrage, I felt my way to a seat, closely followed by Sue."

What Lisa had not included in her imagined speech was the fact that Sue was her classroom aide appointed by the Department of School Education, a plump, dark-haired woman in her thirties, sporting a smock-like dress, and a determinedly schoolish demeanour. Sue was so much part of the scene that the girl did not even think to make her appearance clearer to an imaginary audience.

"G'morning, ten-bee! So nice to be back!" The Teacher beamed toothily, aglow with professional enthusiasm. The class grew slightly quieter and faced the front. She thought it was not a bad group, though she had her doubts as to how she would cope with one student in particular.

Inevitably the class wit had to make a comment. "Didn't slip, slap and slop enough (sun-screen), Miss!" The pink skin facing them flushed even more.

"Only one day at Sorrento (Back Beach)." She forced a smile. "I got a lot of work done in the holidays!"

She eyed the group slouched in the orange plastic chairs, their sniggers almost hidden. The girl in the corner seat at the back was giggling too. However she looked overwrought rather than amused. The Teacher felt an involuntary "Damn" surface in her mind as she noticed that there were fresh tooth marks on the heel of Lisa's hand.

"My God, She's started biting herself again. Bugger these bloody idealists putting people like that in a real school. Just as all those Greek and Italian kids had left, along came the Vietnamese, and I only just got used to them, and now all these smart kids from Hong Kong – and they all want to go to medical school, though they are in Remedial English – and of course their Maths is good! – Well, Autistics are supposed to be good at Maths ..."

"Most of you know me," she said. "But in case you've forgotten!" She turned to the board and wrote, "Mrs. XXXX." She had expected them to be slightly amused, and she was also listening for the rustle and thump of paper and books being taken out. In her own mind she swore. "Shit!" She could not hear any laughs at her little witticism, but neither was there anything in the wriggling sounds behind her which sounded like the fat, hard covered text book she had waiting on the desk next to her briefcase.

"Is there anyone without a text?" she asked.

"Me, Miss!" chorused the class, putting up its collective hand.

"Put your hand up, Lisa," said a softer voice from the furthest corner. A small limp fist went up too, but it was propelled by a hand on the girl's elbow. The Teacher noticed that as usual the hand belonged to the plump older person sitting to her right. When Sue had withdrawn her hand, the fist sank to half-mast in an awkward saggy pose, and stayed there.

"Put your hands down," said The Teacher. Lisa's fist stayed up.

"Why not?" said The Teacher, referring to the missing books.

A gabble arose. From the clamour she picked one voice.

"The stockists said they wouldn't be here till May!"

At the back of the class was a growling sound.

"Too much!" thought The Teacher. "No wonder those scars on her hands don't heal."

The students were shifting their buttocks deliberately on the roughened orange shells, more from boredom than anything else. With embarrassing enthusiasm the woman in the smock took up a pen and started taking notes. The Teacher blinked. She hadn't said anything that was of importance. Then she realised that the aide was writing a note to her charge.

The Teacher felt her world-weary teacher-eyes drift meaningfully around the echoing space filled with seated figures, though she found she could not bring herself to make real contact with the space around the teacher-aide and her companion. She picked up the chalk and turned to the board again. "The old remedy," she thought quickly.

"That is two pages." She underlined the words, and then wrote below, "Why I chose to study Geography this year."

"Remember, all work produced in class forms part of your folio for assessment!"

"Oh, no Miss!" Newly bleached blonde hair.

"Bimbo!" thought The Teacher, whose terms of abuse had been implanted at the same time as her attitude.

A typewriter appeared from somewhere under the hem of the aide's smock, and was pushed to the area in front of the non-speaking student so that she had to remove the clip-on lid herself and then roll a piece of paper onto the platen.

"This always fascinates me," thought The Teacher despite herself. For an instant she thought the speechless student would bite her hand again, because it hung in the air in front of her like a piece of meat. Then the aide raised her fingers and touched the girl on her forearm, and in that instant one could see the flaccid hand tighten slightly, and the forefinger separated from the rest of the digits. Then the wrist flexed slightly, well clear of the aide's palm. by now resting under the girl's forearm. The keys of the little battery-operated typewriter depressed in orderly sequence, and every few letters the determined forefinger stopped its prodding motion to rest on the space bar.

The Teacher walked up the aisles between the formica tables with their chipped edges and rough shredding chipboard, left behind as a decade of bored students had peeled off the rubber trim. From behind she could see what had already been printed in the first two lines.

"Geography and people are the opposing points of the place we occupy in the universe, and that is why this subject fascinates me."

The finger was swinging with more determination, and unexpectedly the aide grinned and said, "Don't be an ass, Liz. Try to think of something else!"

Lisa's mouth straightened into something which in another student would have been amusement, and she started again.

"Geography interests me because ..."

Halfway through the lesson The Teacher switched tasks.

"This squared paper," she said, handing out half a dozen sheets at the end of each row, "is like graph paper."

"Have a heart, Miss!" said the class clown, but copied down the scale for each axis without further protest.

"Not as difficult as it looks; just like a street directory, but this shows the height of the land."

The class drew contour lines, the coordinates plotted on the graph paper.

As every year, someone asked, "What happens if two lines touch?"

"A cliff," said The Teacher.

"... And where there is only one dot?"

"A peak!"

"But, Miss, the other lines near it are at sea level!"

"So, what do you think that minus sign means?"

The questioner sulked. "Mr. Brown said that if he taught us geography this year, we would do computer mapping."

"Not in my classroom!" said The Teacher, more vehemently than she realised.

"Mr. Brown thinks you're a Luddite!" The blond bimbo type looked up from her accurately drafted map and grinned.

"I must say something to that young man about not passing on staff room conversations to fifteen year old kids!" thought The Teacher.

"He was only joking about my hobby," she said disapprovingly. The class looked confused. She smiled briefly. "I weave," she said.

She imagined herself standing in the staff room and thundering, "Mr. Brown, how dare you be unprofessional enough to tell students you think my methods are out of date!" Then, "I know I won't though," she thought sadly. She suddenly felt ineffectual and a little old.

At the back of the room Lisa's mouth emitted a small wailing croon of glee. The typewriter whirred, followed by the sound of paper being torn through, and the aide spoke sharply. "That's not very polite, Liz."

The Teacher pressed her forehead.

"Craig, either sit still or move to a desk which does not squeak."

"But I didn't do nuthin'!" he said.

The Teacher sighed to herself.

"Bloody no-hoper!" said The Teacher, but she said it to herself. She passed on, well aware that they understood each other.

The typewriter carriage printed out "b" then "five". Imperiously the girl pointed at the map.

"b5!" Sue spoke. "Is that your answer?" The finger pointed at "Y". The aide marked the spot. The Teacher leaned over.

"She still has the same problem as last year?"

"I'll show you," said Sue, and then, "You see, if I give her the pencil, even if I touch her, she can't draw the mark she told me to draw."

"Oh," said The Teacher. "Carry on then," and walked on.

"I suppose it is more important that she knows what to do, than doing it herself and getting it wrong," thought The Teacher, but the thought lacked conviction. She reached over the bimbo's shoulder, and could not quite keep the surprise out of her voice. "That's excellent, dear."

"I think you need to check your figures," she said to Craig.

**********

Editor's note: The caricature of a worn-out teacher in this story is not based on any staff members at Lucy's High School, but does illustrate that Lucy understood what makes even the best-run class difficult for someone like Lucy and for the people who worked with her.

_Below, from the same story, there is another example of problems with an "ordinary" school. If you want to follow up, in_ Lucy's Story, _Chapters 8-15 there are references to synesthesia, problems with processing faces and with understanding other people's point of view. No wonder Lucy includes Pauline and the other people who worked with her at school as "_ The most special people (who) were beyond the word 'friends'" (1.9 \- Beamed Down From Syracuse - A Pen Picture of Me 1989)

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"Contour lines again!" said The Teacher the next day. "How are you doing Lisa?" (Not expecting an answer).

"Finished already, dear? Not bad, Craig! Oh, fire drill!"

The Teacher noticed Lisa bite her hand and then block her ears as the whole class leapt to their feet simultaneously talking, laughing, pushing their chairs back with their bodies. They streamed out discussing what they would do over the weekend.

A tall boy with greasy hair pushed past.

"Hi, Liz!" he shouted, and moved on without waiting for an answer from the flushed face pressed into the mutilated hand.

"Liz, stop it. That hand looks terrible," from the Aide. "I've clipped the typewriter together, you carry it." The mouth on the hand said, "Arrr".

Deliberately, one move at a time, the girl stood up. As her plastic chair hit the ground she picked up her belongings from the desk clumsily and in no apparent order. When she had them all, she stepped away and turned to the door where The Teacher and the Aide were both waiting. As she walked between them, Lisa looked as if she were slightly nauseous as if the sudden change in pace had made her giddy.

**********

\- To move out of the classroom I have to push my chair back and stand up.

\- It is strange that the other kids can talk and laugh and pick up books at the same time as they straighten their legs, so that their bums propel the plastic seat back on the timber floor. Then they rocket around, gossiping and planning what they will do over the long weekend.

\- That is so weird – to be able to do all this in the same instant.

\- No wonder they are unpredictable in all their actions.

\- They seem to lurch through time, but with a fluidity which I do kind of envy but find terrifying.

\- What would they make of my planet?

\- There I stand, the gravity sensor in my skull working overtime to compensate for the variations in the hauling cords which invisibly bind me to its surface. That is why sometimes I sway against them. If they are not taut I might fall into the black hole of nothingness. Then sometimes they seem taut, but the anchorage points are frail. Those days I sit very still, my face frozen with fear as the slightest disturbance of these hawsers will tip the universe into oblivion.

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# Appendix 5 - School Scenarios - Concentrating on Communication - "Petra" 1990

I spent Term Four of Year 11 working towards the end-of-the-year exams, and getting to know another new typing partner, Petra. As she says in the conversation between us further on in this chapter, she had no exprience of disability, let alone autism, and no background at all in this new method of enabling people.

She was employed because she was intelligent and well educated. She applied for the position because the school is close to her home.

The skill of receiving messages (i.e. "facilitating") me on the small Canon keyboard she learnt in a few weeks, and within six months she was able to be a facilitator for essays at Year 12 level.

Such a nice lady — but I was surprised to find that I was not comfortable with her for the first few weeks.

One part of the problem was soon solved. LO and Jay exchanged notes, and had a small embarrassed mini-conference on the phone that identified one reason for my distaste. Petra was heavily into handicrafts; not dress-making, but things like making Christmas decorations. She was determined to be my friend, and showed me the many things she had concocted as table decorations. I had an intense, knee-jerk antipathy to creating decorations, partly because it was an activity which had no purpose in my world-view, and partly because I associated it with my time at Special School. Handicrafts had no place in my High School life.

At home I confirmed what they had guessed in a short typed tape:

I TOTALLY HATE HANDICRAFTS!'

The topic of Christmas decorations died away. Maybe LO suggested Petra stick to the more attractive things of life, such as economic systems. I hope she did it tactfully.

The other problem eventually Petra herself identified. Like Jay she had a clear, highish, English voice, which on some frequencies gave the sensation that I think some people get when a finger-nail is dragged over a chalkboard. On other frequencies it would just drop out.

Jay had circumvented this by using body language, cues and writing. Petra started to write memos to me, even when we were sitting side by side. That was what Jay did at home. I think that I may have suggested it to Petra, but she developed it further. We would have typed conversations, passing the typewriter from side to side of the desk.

By 1991 I was comfortable enough to consider her a real friend, for which privilege she had to pay the price of my trying to send her on a guilt-trip every time I was worried about my academic work, or had made a fuss in class:

One sheet of paper from the portable plastic typewriter has this exchange.

_Petra_ _:_ _OK? ... try to please look pleasant (to) please me._

_Lucy_ _:_ ... My look is not in touch with you because you have not been here ... (typewriter malfunctioned) ... that you really not happy with me?

_Petra_ _:_ _I am happy with you. I wish we would go straight to the typewriter or the Canon, and, for your sake, we could keep down the noise (which you are making in class). I am happy to see you. I have been quite sick ..._ _(and explained her children had been very sick too)._ _OK? I like you a lot, so don't be insecure._

_Lucy_ _:_ That is an understatement. I'm always insecure about my life. I am very insecure in the classroom because you have missed so much ...

_Petra_ _:_ _When you write your book, put in a recommendation that people using "facilitated communication" in schools should have an allotted time to talk about all aspects of the day-to-day functions, so that neither person becomes anxious._

**********

Wonderful! There we were, back discussing communication breakdown again!

**********

Interview with "Petra" 11 June 1991 for inclusion in _Communication, Competence and Interaction Project_ for Year 12 Assessment _(Lucy used a Canon Communicator held by "Jay" \- see Picture Gallery - Capitals represent Canon Communicator Tape.)_

_Lucy_ _:_ DARE I ASK PETRA, ON FIRST SEEING ME WHAT DID SHE LOOK AT GETTING OUT OF A COMMUNICATION. CAN YOU REPLY IN COMPLETE HONESTY?

_Petra_ _:_ _My first impression of you was that the possibility of communication appeared relatively hopeless, basically because it was a situation I had never come up against. I had never met anyone who was handicapped - if you can use that word - in the way that you are. Generally I felt hopeless and didn't feel very optimistic about achieving results. I couldn't see how results could be achieved._

_Lucy_ _:_ I WOULD LIKE TO NOW SEE HOW YOU WOULD COPE WITH ME WITHOUT TYPING IF YOU DID NOT SEE ME HAVING COMPREHENSION.

_Petra_ _:_ _No idea, Lucy! I have no training in the field of psychiatry or anything. The only way I would treat you is like a child, because I suppose I would see the things you are doing as childlike mannerisms that I see in my own children._

_Lucy_ _:_ TOTALLY GET THE PICTURE THAT OTHER PEOPLE HAVE OF ME.

_Petra_ _:_ _That's why the more (typed) communication you have with other people, the more you reveal of yourself. That's why it has to be pushed, even when you don't want to do it._

_Lucy_ _:_ (I AM) GETTING THE IDEA THAT YOU SEE ME AS ALMOST TOTALLY DIFFERENT FROM THE WAY THAT I APPEAR.

_Petra_ _:_ _Well, of course! Because we started communicating, and once you start exchanging ideas I can form some kind of mental image of your feelings and your personality. The more you do that, the less I see your "childish" or "odd" mannerisms._

_Lucy_ _:_ YOU TOTALLY HAVE ANSWERED NEARLY ALL MY OTHER RELATED QUESTIONS. I'LL ASK, IN THE BEGINNING HOW DID YOU SEE THE INTELLIGENCE OF GRANIA AND PAULINE WHEN THEY TALKED OF ME BEING SO BRIGHT.

_Petra_ _:_ _I had an open mind. I didn't know either of them well, so I could only assume they were honest in what they were saying. Then you allowed me to read some of your written work - again allowing me to read what you had done, is a form of communication! Once I had seen your communication, I could see for myself what they were saying._

_Lucy_ _:_ SEEING ME TYPE WITH OTHERS MUST BE VERY DIFFERENT FOR YOU FROM YOUR TOUCHING ME WHILE I TYPE.

_Petra_ _:_ _Yes, they make it seem effortless. Now I know that while I am touching you, that it is not effortless on your part, nor on the part of the person "facilitating" you._

I tried to tell my husband what it is like when I am working with you and "facilitating" you in an essay. It is like being a passenger being driven on a long journey, and perhaps the driver is a little bit tired, and you are a little bit worried about whether they are actually concentrating. So you end up driving with them. You turn as they turn. You watch the shadows. You feel as if you are driving simultaneously though you are not physically doing anything. However you almost feel the same strain because in some ways you are going through the same process.

_Lucy_ _:_ NOT A BETTER HELP, BUT A COOPERATIVE ONE! I AM ASKING EVERYONE I TALK TO FOR THIS PROJECT WHAT USE THEY ARE MAKING OF TYPING TO INCREASE PRACTICAL SKILLS.

_Petra_ _:_ _I think knowing that you are a bright person, my approach now is different from when I went into the classroom with you originally. I know now why you are behaving in a certain way. I have a pretty good idea whether you are being manipulative, or whether it is just and autistic "mannerism" expressing itself due to anxiety, boredom, or whatever!_

The keyboard gives me the opportunity to say to you, "What are you feeling?" or ask what the problem is, or just letting you have a whinge. That's fine if that's what's necessary to overcome the anxiety. It's your tool for the communication process.

_Lucy_ _:_ (IT'S) NOT SO MUCH THE WAY PEOPLE INTERACT WHICH MAKES THEM EASY FOR ME TO INTERVIEW USING TYPING, BUT THEIR SELF-DISCIPLINE. THANK YOU, THAT WAS WONDERFUL!

**********

In the completed Project Booklet, I see I have typed as a comment at the end Petra's interview, "It actually is the belief that I very strongly have that the use of communication through "facilitation" is a wonderful help with autism. That is why I wanted to do the project.

This is a clear indication of what can be done to keep a non-speaking person with often very strange and disruptive activity in a non-segregated place. We can work together. That is actually the most revolutionary concept, isn't it?"

************

#  Other writings by Lucy Blackman

Publisher's Note: Because this version of _Carrying Autism, Feeling Language_ has been prepared for multiple editions, **references to text in any other section of the book you are reading** are simply designated by the title of that section rather than by page numbers.

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**All page references in the text are to** _Lucy's Story: Autism and Other Adventures_. (1999), Book in Hand, (2001) Jessica Kingsley Publishers.

**Paperback available for delivery post free within Australia** only from our e-bay store <http://myworld.ebay.com.au/bookinhand08/> or by e-mailing orders@bookinhand.com.au

**Purchasers outside Australia** can order the Jessica Kingsley, paperback edition from all good online bookstores. (Page references are the same in both print editions).

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**Extracts from "Reflections on Language"** by Lucy Blackman come from _Autism and the Myth of the Person Alone_ by Douglas Biklen et al, (2005) New York University Press. (Available from all good online bookstores, in paperback and e-book.) This is a book by six talented authors

\- Sue Rubin

\- Tito Mukhopadhyay

\- Larry Bissonnette

\- Alberto Frugone

\- Richard Attfield

\- Jamie Burke, and

\- Lucy Blackman

and edited with wonderful descriptions of the contributors by Doug Biklen.

**********

_Carrying Autism, Feeling Language_ **also drew on other writing by Lucy Blackman, especially**

"The Chapter". Unpublished manuscript. November, 1992

_Communication, Competence and Interaction: The Experience of Some People with Autism._ Interviews and Conversations with Lucy Blackman. Unpublished booklet. (A communication project as part of the Victorian Certificate of Education English Expression Course.) 1991.

"Draft Essay/Text for Illustrated Description of 'FC'." (Sept. - Nov. 2011), included in Submission prepared for information of the authors of _Facilitated Communication & Augmented and Alternative Communication: a Review_, by Paul Mazerolle and Margot Legosz, 2012. This review was commissioned by the Department of Communities, Queensland, Australia.

_Speech and Wordlessness: An Examination of Assumptions of Direct Speech in Narrative_. Unpublished Minor Thesis for B.A. Hons (Literary Studies) Deakin University 1999

_Talking of Macbeth: Short Stories by the Author of Lucy's Story: Autism and Other Adventures._ e-book. Book in Hand at Smashwords. 2013 Available at http://www.smashwords.com and at on-line bookstores - Also available as _Talking of Macbeth: Destinies and Destinations_ (2008) Paperback print booklet with drawings by Kara Baldwin. PDF of this edition may be available. Contact bookinhand@optusnet.com.au for details.

Lucy Blackman is a contributor to two books of poetry

_Air for the Birds/Deep Thoughts from the Frightened Well_ by Brotherhood of the Wordless, Sandgate Qld, 2012. Available through www.bookinhand.com.au

_Tapping on the Edge of the World_ by Brotherhood of the Wordless, Sandgate Qld, 2006. Available through www.bookinhand.com.au

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