JONATHAN: Good afternoon.
And welcome to Talks at Google
in Cambridge, Massachusetts.
Today it is my
truly great pleasure
to introduce Dr.
Barry M. Prizant.
I've been looking forward
to this talk for months.
Barry's CV is really too
extensive to list here.
Short form, since 1998
he's been director
of childhood communication
services, CCS,
a private practice, and
serves as adjunct professor
in the Center for the Study
of Human Development at Brown
University.
He has published more than
120 articles and chapters
on autism, childhood
communication disorders,
and child development.
He's given more
than 700 seminars
and workshops, national and
international conferences.
He served on the editorial
board of six scholarly journals,
and writes a regular column for
"Autism Spectrum Quarterly."
In our book today, "Uniquely
Human," Dr. Prizant
offers a compelling
new approach.
The most successful
approaches to autism
don't aim to fix a person
by eliminating symptoms,
but instead seek to understand
the individual's experience
and what underlies behavior.
I picked this book up
expecting to skim it,
and wound up reading every word.
I believe it's one of
the most remarkable books
about the human condition
that I've ever read.
Please join me in
welcoming Barry Prizant.
[APPLAUSE]
BARRY PRIZANT:
Thank you, Jonathan.
And it's really a
pleasure to be here.
And good afternoon to you all.
Thanks for coming.
What I'm going to be
talking about in essence
is my life's work, going back
to when I was a teenager.
And I'll talk a little bit
about the path that I took.
But the path that
I've taken in a way
mirrors-- and I
hope we could say
that maybe the work
that I've done with some
of my colleagues-- it is
also very close to the path
that our understanding
of autism has taken.
And that's what my
relatively short talk will
do for you today
as we move ahead,
and that is talk about this
concept of looking at people
with autism as uniquely
human, and trying
to move away from the more
traditional views, especially
over the last 50, 60, 70 years.
70 years ago when autism
was first diagnosed--
or if you will,
described-- by Leo Kanner,
there's been a very
interesting path.
In my career I've
been a part of that
because it's my 46th year
in the field, if you will,
if you count the start
that I had at summer camps.
And I'll be talking
about that a little bit.
So there I am, just to prove
that I do go back this far.
This was a camp
for kids who were
labeled with emotional
behavioral disorders in 1971.
It was two years
after Woodstock.
And yes, I really was there.
And many of these boys
had other diagnoses,
primarily in terms of emotional
or behavioral problems.
And many of you are
aware of-- we now
talk about the autism
spectrum and how much
that category has expanded.
Today, when I look
at these boys--
and it seems like yesterday-- I
would think that at least half
of these boys today would
get a diagnosis on the autism
spectrum.
Whereas back then I
think one of these boys
had a diagnosis with autism.
I want to focus on three issues
for the time that we have.
The first issue
is the importance
of understanding the behavior
of people with autism--
and ASD, if you don't know,
is autism spectrum disorder.
What are some of
their challenges
and their experiences?
And in particular,
we're going to talk
about how people have
described and have
looked at behavioral patterns.
And I will add to that,
have probably misunderstood
a lot of the
patterns of behavior
that have been documented
over the years,
and that are even still
used in diagnosing autism.
I want to talk also
about the belief
that autism is simply nothing
but a tragedy for the child
and a tragedy for the family.
It still lingers out
there, especially
in mainstream settings,
mainstream public.
And a lot of advocacy
organizations
continue to promote this
notion of autism, this tragedy,
because it's a way
that you raise money.
If you say, wait a second.
Maybe that is a
wrong descriptor.
Maybe there are people
with autism and families,
despite the challenges, who
are doing very well, thank you.
But I'm going to be talking
about how many kids I've
followed over the years.
I'll be talking about the
fact that for 20 years
we've been doing
a weekend parent
retreat for parents of children
and adults with autism.
And it's really hard
to find families
who just say, you
know, this has been
just nothing but a tragedy.
As a matter of fact, very
often we hear the reverse.
I'm not saying many.
But some parents actually say,
if we could turn back time
and I could make it so that
my child did not have autism,
would I do it?
And some parents
actually say no.
That they feel they've
lived like more deeply
because of the experience of
raising a person with autism
and of connecting
with other people
in the community of
families that have a family
member with autism.
And we're going to finish
up a little bit talking
about the belief--
again, I think
it's a false belief in a
sense-- that autism is only
within a child or a person.
If any of you have a family
member or a neighbor who
has a diagnosis of
autism, you no it
has probably
influenced your life.
And sometimes in
challenging ways.
But sometimes in very
positive ways as well.
So this notion of autism just
being within a person, we're
going to talk about
that a little bit more
as we move ahead.
I think of it this way.
There's a quiet
revolution going on.
And not too much
of that revolution
has really hit the
mainstream yet.
And what is that revolution?
The revolution is that we're
beginning to look at autism,
and people with
autism, as uniquely
human as opposed to
a bunch of symptoms,
or a pathological condition, or
that autism is the only thing
that we see when we see a
persona who has that diagnosis.
That many of you know,
it's kind of an old adage
now, that once you've met
one person with autism,
you've met one
person with autism.
And that people with autism are
as different from each other
as I am from every
person in this room.
And that's important, because
different people with autism
have different talents,
different passions,
different types of
relationships with people.
But what's happened with kind
of this stereotypic notion
of the person or the child
with autism-- quote/unquote--
in his own little world, or
not being interested in people
is that stereotype has really
taken hold, unfortunately,
in the mainstream public.
And a point I want
to make right now
is, it really has
inhibited possibilities
for people with autism.
So let me just give
you a quick example.
There's a young man.
And just for
confidentiality reasons,
I'm not gonna mention
specific names.
But he's a young man who
went to school in Boston
at the Berklee School of Music.
World famous now.
World famous jazz pianist.
OK.
And I know the family.
And I've known this
young man for many years.
And just graduated from another
renowned school of music in New
York City.
Has 10 CDs.
Travels the world
playing jazz piano.
And yet, in speaking with
his mom, his mom said to me,
you know, he's having trouble
getting a job-- the type of job
he would really love
to have-- cause as soon
as people hear
the word "autism,"
they run the other way.
And here's a person who
is incredibly successful,
and is probably one of the
most engaging, polite, just
wonderful people you
ever want to meet.
So we still have that
stigma out there.
And this is what we're trying
to kind of work against.
So that quiet revolution
that's going on
is being led by parents.
And it's being led by
people who have autism.
There's a group now
out of Washington
that's known as the Autistic
Self-Advocacy Network.
And they are lobbying
constantly for legislation.
They are lobbying for public
policy that recognizes people
with autism as whole people.
Yes, challenges go with autism.
And they're very
open about that.
But they're trying to change
the perception as well.
I've been fortunate enough
to know some of these people.
Actually last
month out in Denver
I shared an hour with one of the
officers of this organization.
And she did a
beautiful job talking
about how when you see us
more as whole people, how that
opens up possibilities for us.
But as long as we go
with the old stereotypes,
doors are literally
slammed in our face.
And we can't move on from there.
So let me just give
you a little bit
of some of this change that's
happening in this revolution.
Some of you may have heard
the term "autistic behavior."
Raise your hand if you have.
Have you heard that term before?
OK.
That person has a lot
of autistic behavior.
Look at that autistic behavior.
And it's such a wide
range of patterns.
Everything from rocking
to flapping when excited,
to jumping up and down, to in
some cases doing the same thing
over and over again the
same way, which is known
as perseverative behavior.
And one of the points that
I make in "Uniquely Human"
by looking at different
patterns of behavior
is now wait a second.
This is all human
behavior that we
engage in very similar
patterns, sometimes
for very similar reasons.
However, very often
we know not to do it
in front of other people.
OK.
Or we may not do
it as persistently.
But we'll be talking
about the fact
that such patterns
of behavior often
serve an emotional regulatory
function, that it helps us
when we're feeling a
little bit stressed.
Or such patterns of
behavior may help us
when we feel we
need to concentrate.
So I see a young person right
here kind of stroking her hair.
You know, when a child
does it who has autism,
oh, we gotta stop that
autistic behavior.
But how many of you stroke
your hair or kind of scratch
your beard, or engage in those
kinds of patterns of behavior,
which sometimes helps us to stay
regulated emotionally, or helps
us focus our energy
a little bit more.
And if we had time, I could
give you more than a dozen
or two examples of
patterns of behavior
that when a person
with autism does it,
it's considered a
sign of pathology.
But when we do it, well,
it's just what we do.
We spoke briefly about
the notion of tragedy.
And the depathologizing
of autism
is now looking at
people being different.
We do know-- and there's
almost four decades
of research on this--
that people with autism
have different patterns
of learning strengths.
And there are extreme
learning differences.
Most people-- I don't
want to stereotype again--
but most people with autism are
much stronger visual processors
than they are processors
of auditory language.
So that's one example.
And if you're familiar with
educational programs, at least
well-designed educational
programs for people
with autism, we use visual
supports persistently
in all settings, rather
than conveying information
primarily by talking.
And that has to do with the
visual strengths, processing,
the strong visual
memory as well.
What for years has
been called obsessions,
or obsessive behavior, now
as part of this revolution,
we're talking about this
as enthusiasms or passions.
People now with autism say,
don't talk about my obsessions.
Talk about my deep interests.
And again, we could
look at ourselves.
And probably many
of you have hobbies
that you can describe
as your deep interests.
And some of what
you do may appear
very strange to other people.
OK?
So personally, many
years ago, I started
doing a lot of
workshops up in Canada.
And I became fascinated
with Inuit carvings.
So I have a whole
China cabinet at home
with more than 100
pieces of walrus ivory
carved into various figures,
and just some rough cut,
not carved into anything at all.
And you could look at that
and say, that's strange.
This guy just has all
these pieces of ivory.
And by the way, it's all legally
obtained ivory, by Inuit folks.
It's part of what they do to
make a living in their art.
But that could be
considered pretty strange.
My family has a
place, luckily, down
by the coast of Rhode Island.
And I like to take a
bike ride every day.
It's my exercise.
And I've gotten
into this pattern
this summer that every
time I take a bike ride
and I stop at Moon
Stone beach, I
have to find a nice
smooth white rock.
And I line them up on the
banister in front of my house.
And when I look at it,
it makes me feel good.
It looks nice.
And it tells me I've done a lot
about bike riding this summer.
So we see such patterns
in people with autism.
But in many cases, if
they're not understood,
they're considered to
be a sign of pathology.
And in some cases, people
say we have to stop that.
We have to break that
particular pattern.
People with autism
for so many years
were thought of as insensitive,
oblivious to the environment,
oblivious to the world,
oblivious to other people.
And now we're
seeing-- especially
as people with autism could
talk about their experiences--
that they're highly sensitive.
Not all, but many
people with autism
are highly sensitive
on a sensory level.
In terms of auditory
sensitivity,
sensitivity to touch, which is
known as tactile defensiveness.
In many of our sensory
modalities, people with autism
are hypersensitive
and hyper-reactive.
But it's not just in the
sensory modalities, which
I think we hear a
lot about, especially
with Temple Grandin
talking about that,
and other famous
people with autism.
Now we're finding that
people with autism
are very sensitive
to other people.
That when other
people talk about them
in disparaging or negative
ways, it's hurtful to them.
They may not be able
to express that.
And so that's a huge
turnaround compared
to our original descriptions of
autism in the 1940s and 1950s,
where people with autism
and kids with autism
were thought of in a
world of their own,
unaware of what's
going on around them.
Now on the surface
it may look that way,
if a child is averting gave,
or is engaged in an activity
that he or she wants to
do over and over again.
But good teachers
of kids with autism
know that very often,
even though a child
is sitting in the classroom,
and doesn't appear
to be watching or processing,
there's a good chance
that that student is.
So when we have these
pathological descriptions which
still linger, even though
we're moving away from it,
what is the ultimate goal
of treatment or education?
You need to change
people with autism.
Now the shift that
we're beginning to see--
and I'm going to quote a very
dear friend of mine who has
Asperger's, he has a
son with Asperger's.
His name is Michael John Carley.
He wrote a wonderful book.
"Asperger's from the Inside
Out."
And what I've learned
from Michael-- cause
so much of what I've learned
come from people with autism
and from parents-- what I've
learned from Michael is,
if you want to help
a person with autism,
don't try to change
them directly.
The best way to help
a person with autism
is to change what
we do, and to change
our behavior and our attitudes.
Now that could happen
on an individual level.
But now we're saying that needs
to happen on a societal level,
that if we create the
possibilities, if we understand
why people with autism do
certain things that might
appear unconventional, or
maybe we don't understand,
that leads to us being
more compassionate.
The word we use to
use is tolerant.
And I like to use
the word, now we
can appreciate why they do
that, and understand well,
it may look different.
But it's not so different
than the types of things
that we all do as
human beings to stay
well-regulated
emotionally, and to try
to navigate through
this craziness
that we call our lives.
So, another thing I
want to bash right away,
which I just alluded
to a few moments ago,
is that people with autism
don't have caring relationships
and don't care about people.
This is my buddy Justin.
This was a number of years ago.
You can see I'm a little
bit more gray now.
But I hadn't seen Justin.
I diagnosed Justin
when he was 3.
And I knew his family
for many years.
They lived in the
Providence area.
And then they moved
to New Jersey.
So I was only seeing
Justin about, oh,
once a year, maybe twice a year
when his family would come up,
or I would just see
him in another place.
I hadn't seen Justin
for over a year.
And Justin is an artist.
And he was showing
some of his art
in a gallery in New York City.
And when he saw me,
this is what he did.
He ran over to me and just
gave me the probably the best
hug I ever had in my life.
OK?
Barry, it's so good to see you!
You are my best
friend in the world!
And he's saying it with passion.
And he's saying
it with sincerity.
So we're really getting
away from this notion
which so many parents have
known for so many years.
But unfortunately, it's
one of those stereotypes
that people with autism don't
have caring relationships
with others.
So why are we talking
about people with autism
being uniquely human?
First of all-- and I'm going
to reiterate a little bit what
I've been talking about--
that behavior and autism has
been misunderstood and
sometimes dehumanized.
Even deep interests
and strengths
have been pathologized
in some cases.
And what do you have to do?
You have to reduce
them or eliminate them.
And we judge behavior
as inappropriate
according to these strict norms
of what appropriate behavior is
in a social context.
One of the things I
love to do, because I
do a lot of school
consulting, is
when I'm asked to observe
a child with autism.
And that child is with a lot
of so-called typical kids.
And we might see the
child with autism
rocking or tapping their chin.
I always like to
broaden my lens,
and let's say it's
a third grade class.
I see half the kids
in the class engaging
in repetitive behaviors
and doing things as well.
And it's no different.
OK?
But again, when we know a person
has that label of autism, then
all of a sudden we have all this
baggage that we attach to it.
So I just going to go
through this very quickly.
Some common descriptions.
All of these descriptions
are from the literature.
The educational literature,
as well as the research
literature over the years.
Noncompliant.
Stubborn.
Manipulative.
Rude.
Bizarre.
Avoidant.
Deviant challenging.
Obsessive/Self-stimulatory.
Nonfunctional.
Meaningless.
Irrelevant.
And that speech in particular.
Perseverative and
non-communicative.
And by the way, by training
I'm a psycholinguist
before I went on to speech
and language pathology.
And so the way I
looked at language
and actually studied
echolalia-- the tendency
to repeat speech for my
doctoral dissertation--
was not just to stay
at that level of form,
but to dig very deeply into the
semantics and pragmatics of how
language was used.
And I was able to
demonstrate that
what was considered to be
meaningless an irrelevant
language in my
dissertation research
and subsequent
research, was language
that was very meaningful.
And in many cases
unconventional, but still very
meaningful.
And guess what?
When you speak to
parents, they very often
have deciphered the meanings.
It's almost like
a private dialect
that families often have.
And it's not just
about spoken language.
Even non-verbal
behavior, even subtleties
of non-verbal behavior
parents pick up as meaningful,
because they see their
child or their family
member in so many contexts.
And they see what it means.
So, this notion of
autism as a tragedy.
Certainly from very early on,
right after Leo Kanner first
described the notion
of autism, that it
was described that way in
the psychiatric literature.
10 years ago, there was
a book-- well-known book
in the history of autism--
called "Evidence of Harm,"
in which the author
David Kirby was
trying to make links between
autism and vaccinations.
And many of you know--
you all know-- how
controversial that issue is.
But in his description
of what autism
is in the introduction to
his book, this is a quote.
He said "Autism is a
lost, hellish world."
OK.
And you say, well
what was 10 years ago.
Things have changed,
haven't they, Barry?
Robert Kennedy, Jr.
a few months ago
initially referred to
autism as a holocaust.
And when people
really protested,
especially people from
the Jewish community,
really protested that he
used the word holocaust,
this was his apology.
"I employed the term
"holocaust" as I
struggled to find an
expression to convey
the catastrophic tragedy of
autism which has now destroyed
the lives of over
20 million children
and shattered their families."
And when I first heard that, I'm
thinking about, oh my goodness.
I don't think you know
the families that I know.
I don't think you know the
people and the children
with autism that I know
if this is what you think.
But obviously a person
like Robert Kennedy, Jr.
has a bully pulpit.
And this is what's
emanating out to the public.
This is what the
public is hearing.
Whereas so many parents
I know-- and these
are quotes from my book-- my
28-year-old son with autism
is the best human being I know.
Another dad said, I've
learned to live every day
from my son who has autism.
And so what we're hearing
very, very different versions
of the experience of autism.
And let me give
you some examples.
A mom who has a blog and
who has a nine-year-old son.
"Welcome to our little
corner of the world.
Some call it autism.
Others call it
despair and sorrow.
I happen to call it hope,
beauty, and fascination."
John Elder Robinson, who's
a Massachusetts native,
very well-known for his
book "Look Me in the Eye."
"Asperger's is not a disease.
It's a way of being.
There is no cure.
Nor is there a need for one.
There is however, a
need for knowledge."
And what he means by that is
a need for understanding us.
And this was a father
speaking at our retreat.
"The people who have
been most helpful to us
are those who do not
take away our hope.
We have learned to keep away
from the doom and gloom crowd."
And that's another-- I'm
kind of simplifying it--
but that's another
dichotomy that we see now.
The doom and gloom crowd about
autism still is a tragedy,
and we have to do everything to
find the cure, as opposed to,
autism is a different way
of being in this world.
And yes, there are
considerable challenges
that vary from mild to extreme.
But we feel it's much
more productive to look
at it that way.
So what have we learned from
experience and from research?
Once again, there's no such
thing as autistic behavior.
It is all human behavior.
And that a lot of patterns
that are considered
to be autistic behavior
are best understood
as reactions to this crazy
world; reactions to confusion,
and stress, and anxiety;
and are often attempts
to communicate and cope.
So for example, we do know
that people with autism
often protest in
unconventional ways.
So if a child is asked
to go into a very
busy, noisy cafeteria, he or
she may drop to the floor right
on the threshold of
going through the door.
Now you could say
that's autistic behavior
or bad behavior.
Or you could say that that's
the way she protests because she
doesn't have the
language, or maybe she's
not using a speech generating
device yet to be able to say,
no thank you.
It's crazy in there.
OK?
So what we're learning is that
all behavior is communication.
And a lot of behavior we see
in people with autism that
was pathologized now serves a
lot of different communicative
purposes and functions.
And it's our job as parents, as
therapists, as teachers, even
as neighbors, to be
able to connect and help
people with autism to
communicate more successfully,
and to be more in the
flow of life with us.
So we need to ask why.
And another thing that's
been that big turnaround
is that we now have so
many people with autism
telling us that
when you allow me
to focus on my deep
interests, that's
a wellspring of
opportunity for me.
It may end up being a vocation.
It may end up being a hobby.
It might be the
way that I connect
with other kids in
an after-school club
in high school.
But please, don't put
down my deep interests.
And we have a chapter
called "Enthusiasms"
in the book "Uniquely Human."
And I'll just tell
you about a couple
of them right now, amazing
they are in some kids.
I met a family that had a
nine-year-old son with autism.
And this was in Virginia about
a year, year and a half ago.
And after I gave a little talk,
the mom came up to me and said,
I love how you use
the word enthusiasms.
And I didn't invent
it by the way.
A mother-- a very
well-known mother--
Clara Claiborne Park,
who was at Williams
College for many years.
And she has a daughter with
autism who is an artist.
She came up with
the word enthusiasms
to replace obsessions.
But this mom said
to me, you know
what my son's enthusiasm is?
I said, what?
And she said, spices.
I said, spices?
Well, he loves to line up all
the spices in my spice cabinet
in alphabetical order.
And not only that, but he's an
expert on regional barbecues
in the United States, from North
Carolina, to Texas barbecue,
to on and on.
And he could tell you
what the differences are
in the spices in ten
different barbecue
varieties around the country.
Nine years of age.
And then she said very
proudly, you know,
and he loves to
watch cooking shows.
And I think he's
going to be a chef.
OK.
So that's a good example of
a passion or an enthusiasm
that we would say is
interesting and maybe society
would value that.
But there are also
very different passions
and enthusiasms that we have
to kind of shape and help
people with autism
to, if you will,
use in their lives in
ways that they are valued.
OK.
Just what might be considered
some autistic behavior.
Some quick slides.
Here's a little guy.
He wasn't yet diagnosed.
He was diagnosed at six
years of age with Asperger's.
He's three here.
And his mom gave me this photo.
Hypersensitive to sound.
Didn't help very often if
he didn't have pot lids.
I don't know how
effective those are.
He would cover his ears.
Here's a young man,
eight years of age,
who when he got tired at
the end of the day-- see
he's in his pajamas-- he would
but his body in this position.
And the technical term is he's
increasing vestibular input
and proprioceptive
input, which is
very alerting to your
neurological system.
And he would do things
like this whenever he was
tired at the end of the day.
Almost like a toddler
running in circles when
they don't want to go to sleep.
And this is not a
young man with autism.
This is my son 10
years ago, who's
a so-called neurotypical child.
OK?
We're about to send him
off to Wazzou next week.
My only son's going
off to college.
But yeah.
Typical kids engage
in autistic behaviors.
What do you think about that?
And persistently, in some cases.
When he was tired as a
baby-- well as a toddler--
he would sit at
the table and go--
[THROAT NOISE]
I have all these videos
I could show, literally,
edited segments of
videos of my son.
And people in the
field of autism
would say, how old is
that child with autism?
This is very interesting.
A few years ago, when I
did office assessments,
which I don't do now.
I mostly consult out.
We had just done
a team assessment
on a second grader with autism.
Had a little bit of
speech, not much.
And echoed a lot.
Repeated a lot of what
he heard to communicate.
And we were sitting
with his parents.
And we were giving his
parents some feedback.
You know, we're talking about
what Eric's strengths were,
and the areas we really
want to work on with Eric.
And we gave him a little tin
of markers and some paper.
And we saw he was kind of
persistently taking one marker,
writing something down.
Putting it back in.
Taking another colored
marker, writing it down.
But we weren't watching
what he was doing.
He ended up filling up
three sheets of paper
with these sequences
and patterns of numbers.
And his mother said, oh yeah.
When he does it in school, they
say it's perseverative behavior
and he has to stop it.
When we saw him do it, there
was absolutely no doubt.
He was doing it to stay
grounded, to say emotionally
well-regulated.
Because he wanted to be with
us and with his parents,
but he needed to tolerate all
these adults talking quickly
back and forth to
each other, which
was probably difficult for
him on an auditory stimulation
level to deal with.
But this is
absolutely brilliant.
There are all kinds
of patterns in there
that he just came up
with spontaneously.
So, how can we refute this
autism is a tragedy belief?
First of all, build
understanding.
And this is so
important for parents.
Parents crave hearing
the positives,
as do persons with autism.
And a piece of if is
depathologizing these types
of patterns of behavior.
In my book I tell
a story of a child
whose father, for Christmas,
had bought her a bumble ball.
You know what a bumble ball is?
It's a rubber ball that has
little spiky things on it.
And it has a motor
on the inside.
When you turn it
on, it vibrates.
And this dad was so happy
that he had bought this
for his four-year-old daughter.
But when I visited the home for
the first time, he said to me,
was this the wrong thing to do?
Buying this ball for my
daughter for Christmas?
And I said, I can't see
how that would be wrong.
And he said to me,
well, his therapist
said it's just going to
increase her autistic behavior.
And you really shouldn't
buy things like that.
And it devastated the dad.
And if you think about it, it's
basically saying to the day,
your intuitions about
your daughter are wrong.
We discus this a
lot in the book,
how often parents' intuitions
about their child-- which
are very often reasonable and
right on-- parents are told,
no you shouldn't be doing that.
You should extinguish
that behavior.
You have to discourage
that interest.
And it still happens,
unfortunately.
We want to respond
with compassion.
Too often, people with
autism and parents
are feeling that they're blamed.
One of the biggest challenges
right now in autism
is mental health issues
as people move on
past the elementary
school years.
A lot of depression.
A lot of feeling, I'm stupid.
Feeling I'm lousy.
Because they're getting
that kind of feedback
from other people,
when in many cases
these are very, very bright,
engaging individuals.
But they're misunderstood.
Expressing appreciation.
We want to create positive
images of people with autism,
and celebrate successes.
And then of course,
providing support.
Highlighting the strength
that people show,
because one of the
characteristics of autism
is peaks and valleys.
I'm not saying every
person with autism
has great talents or
great savant skills.
But certainly we see
the peaks and valleys,
which creates some of
that mysteriousness
when somebody sees a child.
So we want to provide a more
realistic balance perspective.
So when we think
about autism only
being within the child-- which
I refer to as the disease
model of autism--
then progress is about
recovering the
child from autism,
changing the behavior so we
no longer see, if you will,
those symptoms that are
listed as diagnostic criteria.
And some people still say,
we recover kids from autism.
We make them normal.
But as a dad once said
to me, isn't normal
just a setting on a dryer?
OK.
So what we've learned
is that autism
is a shared human experience.
It becomes part of the fabric
of life for all involved.
And I know for me I
could speak personally.
I mean, it's so integrated in
my whole world view and my life,
so integrated in
how I raise my son.
It's so much a part of
who I am that I feel
we must express appreciation.
It helps us become
better people.
Another very important point
is development is lifespan.
There's this notion of window
of opportunity closing shut
that parents of kids with
autism hear all the time.
If your child doesn't
make so much progress
by five years of age, basically
you've doomed your child.
Well, guess what?
It's a total misapplication
of the notion
of neural plasticity.
And we really, really
argue against that.
Yes, research indicates that
one of about five factors that
leads to better outcomes
is getting started earlier.
OK.
But we also know that
development is lifespan.
I've known so many
people with autism
who just made leaps and bounds
of growth in the teen years,
even as adults.
And we have to hold
on to this now,
because so many parents are
terrified when they hear that,
that you must do so
many hours of therapy
by the time your child
is five years of age.
And my friend
Michael John Carley--
the man with
Asperger's who I spoke
about earlier-- one of his
quotes-- "A person with autism
is more a product of
their life's experiences
then their autism."
And I think that's very,
very important to hold onto,
because that's the same with us.
Same with us.
So, autism is a shared human
experience for educators,
families, and those with autism.
It's all a part of our lives.
A couple of other
points, and then I'm
going to open up for questions.
One very nice story-- this
actually goes back 15 years.
"Chicago Tribune" magazine.
A young man named
Stanford James who
was passionate about trains.
Thomas the Tank Engine.
Somebody once said,
interest in trains
should be a diagnostic
criterion for autism.
And Stanford was fascinated,
passionate about trains.
Raised by a single mom in city
projects in South Chicago.
A family living in poverty.
And this article spoke
about over many years
what, his mother was told.
And his mother was
told, yeah, they told me
I got to put those trains away.
Or I should throw them out,
because Stanford will never
develop.
He'll never learn.
She goes, he loved them.
And I always went along
with what he loved.
And I used it.
Well, this is a picture of
Stanford in his twenties.
An employee of the Chicago
Regional Transit Authority.
He won employee of
the year that year,
because he was the most reliable
employee in that organization.
And it was a quote from
his immediate boss,
"I love Stanford.
He's just so reliable.
He never has to check the
train schedule on the computer,
because he's memorized
the train schedule.
And he doesn't spend a
lot of time schmoozing
over the water cooler.
He needs to come in and work,
and get his full day of work
in.
And he always is willing
to work a little bit more
if I need him.
And the most important
piece here is the pride.
Here is a person with a
strong sense of identity,
who knows who he is.
He knows he has autism.
And he says actually
in this article,
"I tell myself in
my mind, Stanford,
you are the best
person you can be."
And unfortunately, that's not
happening enough for people
with autism.
So I want to show you a
quick video-- it's just
two minutes-- of the
young man I showed earlier
who was hugging me-- Justin.
And it's a video about
Justin talking about his art.
Now Justin was diagnosed with
moderate to severe autism
when he was young.
That wasn't my diagnosis.
I kind of confirmed
his diagnosis
after other people saw him.
And his parents really
worked on his passion.
Initially it was
cartoon characters.
Then they had artists
work with him.
And now he is an artist.
And he teaches art
to kids with autism.
And he teaches art to
so-called neurotypical kids.
Here's Justin.
[BEGIN VIDEO PLAYBACK]
I love to do
animating and ills--
animating and illustrating.
I started drawing
in my composite book
since in the fall of 2003.
It's the reason I love to draw
"Sesame Street" is because it
returns to my childhood.
"Sesame Street," "Looney
Toons," Disney and animals.
When I move to the
apartment, I'll
deal with my responsibilities.
For example, laundry,
the dishwasher,
take care of my cat.
I'm gonna miss my fam--
I'm gonna miss my family.
I was in a tie, happy and sad.
That was a tie.
Remember "Toy Story 3".
Andy goes to college.
The reason in "Toy
Story 3" is a sad movie
is because Andy's
going to college.
And it makes audiences
sad because of separation
and missing.
One of the best
things about Disney
is, Disney is for all ages.
If I draw Disney, that
makes everybody very happy.
My drawings can be
everybody's gifts.
My drawings can be
everybody's miracles.
[END VIDEO PLAYBACK]
OK.
So, why a uniquely
human perspective?
Because a deeper understanding
builds trust with people
with autism and their
families, makes our communities
more humane and caring, and
makes us all better people.
And Justin's boss at the
time that this video was
made actually said,
you know, the fact
that Justin is a great
artist is a "so what" to me.
The fact that he's an
inspiration to every employee
of mine is what really counts.
OK.
So I think we're OK for some
questions now if you have.
Yes.
AUDIENCE: I had a question
about schools and teachers,
because one of the things that I
see, I'm an education advocate,
is that the IAPs, they're
almost cookie cutter IAPs
for each child with autism.
And it makes me
crazy that they don't
understand the differences
between the children.
Can you recommend some
particular websites
that I can give to
teachers to understand
that not all people
with autism are alike,
and they don't need the
same accommodations?
And I'm having a
hard time getting
them to understand that.
BARRY PRIZANT: Yes.
Yes.
The issue-- and that
is an important issue.
There are some approaches--
educational approaches
in autism-- which
are kind of one size
fits all for all children.
We actually have an
educational model that's
being used in 12 countries now.
It's highly individualized.
It's a developmentally
based model.
So actually a
colleague of mine who's
from this area-- Dr. Karen
Levine, who's a psychologist--
yeah.
Karen just came out
with a book called
"Individualized Interventions
for Children with Autism."
I believe it came out last year.
But people are finally
moving away from that.
Because more traditional
behavioral approaches
dominated for so many years
based upon operant conditioning
approaches.
And if you don't look at
a person-- any person--
developmentally, you can't
appreciate the learning
differences.
And you can't
appreciate that you
have to use different strategies
and very different teaching
modalities to really
reach this person.
I would say that's probably
in my mind, one of the top two
or three really bad things that
happen to people with autism,
getting snapped into a
program that is supposed
to work because you
reinforce the right behaviors
and you use the
right reinforcers.
But it has nothing
to do with who
that person is in terms of their
strengths and their interests.
AUDIENCE: Or the social
pragmatics piece.
I'll find that like, well, we're
giving him social pragmatics.
And it's just a
matter of the child--
it's a script for the child.
They can do it during lunch
bunch or what have you.
But they're not
having opportunities
to practice it in the real
world, or an assumption
like, oh well, just because
they have pragmatics,
they're going to learn how to--
BARRY PRIZANT: For
decades and decades
we've learned that if you
teach a child or a person
with autism something
in one situation,
and you only measure progress in
that situation, that's not what
we call meaningful progress.
So I could speak about my
model with my colleagues,
called ASSERTs model, which we
talk about natural environments
with the right supports.
And whenever we talk about
important goals and objectives
to help a child to be a
more competent communicator,
it's always
simultaneously approached
across homeschooling
community settings.
It has to work that way.
Unfortunately,
the learning style
of some people with autism
is situation-specific.
So yes, I could learn
to say this or do this
Monday, Wednesday, Friday
with the speech pathologist
in this room.
But we have to
build in the ability
to generalize across
many different settings.
Yes.
AUDIENCE: Hi.
So it was actually nice
to see Justin up there.
I know him.
I'm from New Jersey.
I lived right outside Montclair.
BARRY PRIZANT: Oh my goodness.
AUDIENCE: Yeah.
So, my younger
brother has PDNOS.
BARRY PRIZANT: Which is
no longer a category now.
AUDIENCE: I know.
So, that's been a
whole other thing.
I'm trying to work
with that into his IP
and scholastic things,
changes from that.
But my brother has autism.
Two of my cousins.
My grandfather, my
uncle, and my aunt.
And just seeing the way that my
immediate family has approached
it as opposed to the
family of my cousins
is completely polar
opposite situations.
Whereas my cousins' family has
bought more into the Autism
Speaks dialogue, as
opposed to my family, which
is trying to-- I do a
lot of advocacy work
with my brother, who knows
he has autism, and does
a lot of outreach stuff too.
Trying to institute person-first
language into schools
and things like that.
So what would you say is the
best approach, besides reading
your book and attending
talks like this, to try
to make people
understand the importance
of linguistic markers
and things when speaking
about people with autism.
BARRY PRIZANT:
Well, let me first
address that point right away.
And I actually do begin
the book with this,
that I use person-first
language, child with autism,
person with autism.
I'm not militant about it.
There are some very
prominent important voices
in the field of autism-- people
with autism now-- who say, no.
I'm autistic.
I'd rather you call me
autistic or an autist,
than call me person with
autism, because it's
such an inherent part
of who I am as a person.
Temple Grandin says that.
Temple Grandin refers to people
with autism as autistics.
OK?
And she says, it's an
inherent part of who I am.
So I think it really is the
preference of the individual,
as far as that goes.
But when you talk about the
Autism Speaks perspective,
I can imagine most of you are
familiar with Autism Speaks.
Started by grandparents
of a son with autism.
He also happened to be at the
time, the CEO of NBC Universal.
It's the largest advocacy--
quote/unquote-- organization
in the world.
And they've been
drifting back towards,
a little bit towards, let's
really help people with autism
every day.
Initially it was all about cure.
And the $60, $80 million they
raised a year in research,
the great majority
of it was going
towards biomedical
research about a cure.
And at the same time
this was all happening,
they had about
80, 100 employees.
Not one had autism.
And actually, John Elder
Robertson, whom I quoted,
was invited to be an employee.
And he lasted three
months because he
said he couldn't
tolerate the way they
looked at autism there.
But it's the most
powerful organization--
visibly powerful.
You know the lighted up blue,
where all these buildings
all over the world are
lit up blue from Dubai
to the Empire State Building--
they're responsible for that.
They're changing as
the grandson grows,
and they see he's not
going to be cured,
and as things begin to
shift a little bit more
towards quality of life.
But yeah.
When you have very
loud voices kind
of dominating the
discussion about autism,
it gets away from there
are other points of view.
Like in your family,
and how do we
teach people about that
other point of view.
One of the best ways I say
right now is what I've done.
Listen to people with autism.
There are so many voices,
so many people right now,
so many blogs of extremely
thoughtful, articulate people
with autism, many
married, have kids.
But they're very upfront
about their challenges.
Some who don't wish
ever to be married.
And they could talk
about that as well.
But for me, luckily I met
Temple Grandin in the '80s.
And I've hosted her many times
to speak at our conferences.
So I was exposed to people
with autism early on.
And now I regularly do workshops
with people with autism.
I'm a sponge.
I just soak up every
bit of understanding
that I can come
from folks who can
talk about their
first-hand experience.
AUDIENCE: Just a quick
follow-up question.
Why do you think that research
organizations and people
as a whole have
been so-- initially
at least-- adverse to listening
to people who have autism?
Why has it taken us so
long to get to that point?
BARRY PRIZANT: Yeah.
That's a great question.
Why has it taken so long to
listen to people with autism?
For many years I actually
said, when Temple Grandin
was pretty much the
only voice out there,
I said, well it's wonderful that
she's sharing her experience.
But when I see people listen
to her at a conference,
they're more there because
she's a curiosity then
are they there to really take
to heart what she's saying.
And I think it's still happens
when professionals are not
exposed to a lot of
people with autism,
I think it's like,
oh my goodness.
This person with
autism could actually
tell me what their
emotions are like,
and their inner world is like.
And we have to get
beyond that curiosity
and say, these are such
important, critical voices
to help us all understand.
Another reason is that
a lot of what they say
goes against common
practices in the field.
Like for years, decades, you
had to do eye contact training
for people with autism.
And now you have dozens
of articulate people
with autism saying, you
know, it's really hard for me
to process what you're
saying when you make me
look at you at the same time.
And so they're actually
shaming, in some ways,
a lot of very well-known people
in the field in education
and treatment, because
what they're saying
is the opposite of
what these people have
prescribed for so many years.
So I think there's a little
bit of that element as well.
As a matter of fact, a
number of years ago--
and this happened in Boston
at one of the schools for kids
with autism-- there was
a very well-known woman
who has now written five books.
Donna Williams.
She's from Australia.
She has autism.
And she was coming to
speak in New England.
And she speaks very much
against the type of approach
that was used in this
school in the Boston area.
And people sent out all these
faxes saying, she's a phony.
She really doesn't have autism.
Don't listen to her.
And it's kind of
like, people just
couldn't tolerate
that she was a voice
speaking against the approach
that was used at this school.
Heavy duty politics
in the field.
AUDIENCE: Hi.
BARRY PRIZANT: Hi.
AUDIENCE: I'm a
speech therapist.
And what I've noticed
is that the schools
are very eager to give out
behavioral supports-- 20
hours of ABA for
our little kids--
and not so eager to
give out speech therapy.
How does that-- all the
enthusiasm towards ABA,
shape, you know,
what you're talking
about in terms of behavior
and how we look at it.
And what should we do
to use them, and use
that support to our benefit?
BARRY PRIZANT: Do we have
time for a full day workshop?
First of all, let me just
say, when we talk about ABA
applied behavior
analysis, there are
about eight different versions.
OK?
There's very traditional ABA,
which we speak up against.
And that's set the
child down and drill
and drill over and over again.
Train eye contact, and so forth.
There are many very
fine behavior analysts
who have taken in some of
the developmental literature,
and the individual
learning style literature.
And actually, I like to say
there are some folks in ABA who
are closer to what
we do than they
are to other people within ABA.
OK?
So there's been a shift.
This area, in particular,
Massachusetts.
New Jersey is another state
very heavily influenced by ABA.
Other places in the
country, not so much.
There definitely is a shift
and an change that's happening.
And I could talk to you
about this afterwards.
But actually our organization--
the American Speech Language
Hearing Association--
just successfully filed
a formal complaint to the
Federal Department of Education
about ABA having
too much influence,
especially in teaching
language and communication.
And the Department
of Education just
released a letter
last month saying,
we need to have all
disciplines involved.
And that basically applied
behavior analysts are not
the specialists in
all areas in autism.
So people are now
saying, wait a second.
That is, I believe
this down to my core.
A team approach is best.
When you have OT speech
and language pathologists,
educators, parents, behavior
analysts all working together,
and you don't have a
hierarchy of one person who's
calling all the shots.
And unfortunately,
that creates all kinds
of problems when I
go to schools and I
see that hierarchy in place.
It really needs to
be a team approach.
And I want to emphasize
the parents having
a very strong voice.
AUDIENCE: I just wanted
to ask about linking
to humor, sort of making a
cognitive basis for humor.
And how if you've
worked with that
in your particular practice.
It seems like five years
ago, very few people
were talking about it.
If I Google it now, I
get lots of results.
And I wondered if you
could address that.
BARRY PRIZANT: Well, in
a way, the whole issue
of humor and autism
makes as discard one
of the kind of a
longstanding false beliefs,
that people with autism
don't have a sense of humor.
They have a different
sense of humor, OK?
So people with autism
might find humor
in word meanings or wordplay,
but not necessarily humor
that's deeply embedded in
social nuance, if you will,
in some cases.
But there's actually a project
down at the Groden Center
in Providence that's led
by-- oh my goodness-- Cooper
Woodard, who's a psychologist.
And it's a positive
psychology approach
to autism, where they teach
the students with autism
to tell jokes, and to engage
in activities that-- and I'm
going to move a little
bit off of humor now--
but that create
positive emotion, shared
positive emotional experiences.
But once you get
into humor, if you're
talking about humor
through language,
then that could be
challenging for some people
on the spectrum.
One of the things that's
really fascinating
is people with autism
often find humor
through nonverbal
behavior really engaging.
So for example, looking
at old silent movies,
or I'm going to
blank on this now,
but there's a comedian, English
comedian, and some of his work
has been on PBS over the years.
And it's almost mime-like.
It's purely nonverbal.
And a lot of people
with autism just
find his humor to be the
funniest humor in the world,
because in a sense, it dances
the linguistic aspect of it.
AUDIENCE: Hi.
Our son has been
diagnosed on the spectrum.
Very low, when he was
treated when he was six.
He's now 11.
And we have chosen not
to have an IAP for him.
And usually we end up
working with the teachers
and meeting with them.
Invariably they contact us.
And it's like, we
need to have sit down.
Well, next year he's going to
have more than two teachers.
And there's gonna be
about seven of them.
And I don't think this approach
is going to work anymore.
Is there something
you can suggest?
I mean, I agree with the IAP
not being the best route.
But next year we won't
be able to sit down
with seven teachers.
BARRY PRIZANT: Right.
Yeah.
And you know, unfortunately
for the challenge
you're facing, if
you would ask me
what is one of the best
situations for a student
or a child with autism,
educational situations,
it's when everybody's
on the same page.
And it's less confusing, be
less confusing to your child,
and less confusing to you.
Without knowing specifics,
it's hard for me
to make any specific
suggestions.
I will tell you this, that
one of my earliest experiences
that was such a
wonderful experience--
and I'm not saying you need
to do this-- was a family who
had many different people
both in and out of school
working with their son.
And he was 10 or 11 at the time.
And what they did
was once a month,
they would have a potluck
dinner over at their house
and invite everybody over
as a way for everybody
to relate to each
other, and truly feel
that they're part of a team.
That's going to be
your major challenge,
that people feel
connected to each other
to share information.
And so we can all be on
the same page for your son.
But if you have people coming
from different practices
and some from private practice
and so forth, again, I
don't know the specifics
of your situation, what's
going to be so important
for you to reinforce
is that we are part of the team.
And certainly
using-- whether it's
bulletin boards, message
boards on the internet--
and they do have ones
that can be secure now,
where everybody could
communicate with each other,
and talk about, well, what
just worked in this activity,
or what we're shifting
out some other goals
that we're adopting,
and so forth.
AUDIENCE: Do you find it
useful to proactively speak
to the teachers,
speak to them prior
to the school year starting?
You know, in that respect?
BARRY PRIZANT: Absolutely.
And you know, that's
referred to by some people
as transition planning.
And it's actually some of what
I do when I consult to schools.
When I consult to schools on
a regular basis, and I go back
and I know the people.
We start transition
planning for some kids
as early as April
of the school year
before, planning for September.
Who's going to be the teacher.
What visual supports do we want
to have to go with the child.
And in best-case
scenario, we have
staff from the coming year come
to observe the student now,
before the transition happens.
The more we can make
things predictable--
not only for a
child with autism--
but for all of the
staff, the better
it will be come September
or August, whenever
the school year starts for you.
So that's important.
It's also important
to build trust.
We speak a lot about
professionals and parents
building trust
together in my book.
And that is so important,
because as you probably know,
sometimes it goes the other way.
And you begin to have
adversarial relationships
and mistrust.
And unfortunately,
in many cases,
it's the family
and the child who
are the victims of
that when it happens.
There are some very, very
fine professionals also
who will bend over
backwards for you.
And those are the people
to-- they're golden.
AUDIENCE: Just two
suggestions for you.
One of the things you can do
is like, think outside the box.
You can contact the
school and ask them
if they can provide a buddy from
the middle school for someone
to walk around with them.
The other thing
you can do is ask
if your child can visit the
school beforehand, and see
who the teachers are, just to
help with the comfort level.
BARRY PRIZANT: Good parts
of transition planning.
So thank you very much.
We are out of time.
And I hope this was interesting
and helpful for you.
Thanks.
[APPLAUSE]
