Susan Boyle, the Scottish singer, spent a lifetime believing she had “brain damage.” Christina Gleason, a copy editor in New York, always thought of herself as a little "weird." But both women
Their stories echo that of
countless others who learn later in life that they have a form of
autism: Finally, they know where they belong.
We don’t know how
many Americans are diagnosed with autism as adults; no one keeps track
of those numbers. But, according to the Centers for Disease Control and Prevention, autism is most often diagnosed between a child’s 4th and 6th birthdays.
“Most children are diagnosed in early childhood,” says Amy Daniels, assistant director of public health research for Autism Speaks.
“But I think for adults and a number of older adults — so, probably
Susan Boyle’s age and older — when they were kids there was a lot less
known about autism. So it would’ve been more likely that those
individuals were not diagnosed at all.”
The diagnostic criteria
for autism has changed dramatically, even in the last 20 years,
explained Megan Farley, a psychologist at the Waisman Center at the
University of Wisconsin, Madison. Until the mid-1990s, there wasn't an
autism "spectrum" — there was just autistic disorder. "It was this very
strict type of diagnostic category," Farley says. That captured the
"classic" cases of autism, but people with more subtle signs of the
disorder slipped by unnoticed until 1994, when Asperger's syndrome was
introduced. (Asperger's syndrome is no longer an "official" diagnosis,
and what used to be Asperger's is now the mildest level of autism
Generally speaking, autistic people who make
it to adulthood without a diagnosis are probably very high-functioning,
says Robert Naseef, a Philadelphia clinical psychologist. “If that child
is functioning in school — doing well, not having any overt behavior
problems — he’ll fly under the radar,” Naseef says. “Especially girls —
boys have more behavior issues when they have autism spectrum disorder.”
Just like in children, a diagnosis of austism spectrum disorder
is based on two core symptoms: impairment in social communication and
the presence of repetitive behavior, Daniels says.
lives in Clifton Park, N.Y., says that soon after her son was diagnosed
with Asperger's syndrome in preschool, she realized that she recognized
much of the diagnostic criteria in her own behavior.
“My son had
been diagnosed in preschool, and it was through my research for the best
ways to help him that I realized it sounded a lot like me and what I
went through in my childhood,” Gleason said in an email. (She says phone
calls make her nervous.)
“It took a while after that realization
before I talked to my doctor about making the diagnosis official, but
it's helped me put a lot of events from my life in perspective, and I
can use my experiences to help my son navigate elementary school with a
positive understanding of how he is wired differently than some of his
Surprisingly, it’s not even clear how many adults in
the U.S. have autism. The best estimate we have, says Farley, is 2
million — that’s based on the number of kids who are being currently
"Historically, the focus has been on young children,"
Daniels says. "And as these children are aging, there’s the recognition
that autism may be affecting them throughout their lives — from
childhood to adolescence and adulthood. So just as there needs to be
early diagnosis and detection — there also needs to be support later in
Experts say that newly diagnosed adults should start by
looking for support agencies in their community. "There should be an
autism society in your state," Farley says. And, she says, there are
some great online resources created for adults with ASD, by adults with
ASD — she names WrongPlanet.net in particular.
I found this story on Today.com