Guardian columnist Nicola Clark started the
Twitter hashtag #shecantbeautistic to spotlight
how women with autism are often dismissed,
misunderstood
and underdiagnosed, if diagnosed at all.
And guess what: #sheisntalone.
The Centers for Disease Control and Prevention
reports an autism spectrum disorder prevalence
rate of 1 in 68 American children.
But obtaining that diagnosis and the life-changing
therapies and resources that can come with
it is particularly challenging for adult women
like Nicola Clark because the combination
of gender and age can make them doubly invisible
to the clinical community.
As with ADHD, researchers are only now paying closer
attention to how autism functions and presents
in girls since historically, it’s been described
as a neurodevelopmental disorder that creates
“extreme male brains” – brains that
are sort of masculine superlatives.
In fact, many diagnostic tools have been developed
based exclusively on how autism functions
and presents in adolescent boys.
And that means being a woman going to the
doctor to find out if she might be autistic
is somewhat like going to a proctologist for
a pap smear; it’s just not gonna happen.
To get a better sense of why that is, it’s
helpful to know that the three primary symptoms
of autism spectrum disorder are social impairments,
communication difficulties and repetitive
or restrictive behaviors.
Based on older research, boys are about 4
to 5 times likelier, on average, to be diagnosed
(and therefore to receive appropriate treatment)
than girls.
At least for now.
More recent studies are paying closer attention
to both how girls’ brain structures and
socialization patterns differ from boys among
both autistic and non-autistic populations.
They suggest the gender gap may be narrower,
especially among high-functioning kids.
When it comes to those three autism hallmarks,
girls tend to be more social and verbally
fluent than boys, and repetitive behaviors
are often less outstanding.
Whereas autistic boys might exhibit aggression
and hyperactivity, autistic girls are more
adept at masking outward manifestations of
the disorder.
Fast forward these patterns to adulthood,
and women like Nicola Clark who have friends,
families, kids and stereotypically feminine
interests
may be deterred from receiving autistic assessments.
As one woman tweeted: #shecantbeaustic because
she’s an extrovert.
Cynthia Kim, a writer at Autism Women’s
Network, says autistic women are instead likelier
to be diagnosed solely for eating disorders
and anxiety, which commonly co-occur with
autism in women, as well as obsessive compulsive
disorder, bipolar disorder and borderline
personality disorder.
But I can’t tell you precisely how often
this happens because it simply hasn’t been
thoroughly researched.
What I do know for a fact: a LOT remains to
be explored and clarified in how autism functions
and presents in girls and women, including
its effect on relationships and employment
as well as optimal treatments and resources
for aging women with autism, a cohort that’s
virtually undetectable in existing studies.
Also: correct diagnoses can make a world of
difference.
Just take it from Nicola Clark, who wrote:
“When the diagnosis came I cried with relief.
I’d felt it was almost a battle, that I’d
had to prove myself, that I wasn’t mad."
So how about you? Does that #shecantbeautistic ring a bell?
If so, let us know.
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