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 were diagnosed with autism spectrum disorder as adults, and both say that diagnosis brought them immense relief.
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 spectrum disorder.)
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.
Gleason, who 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 friends.”
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 diagnosed.
"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 life."
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.
Gleason, who wrote beautifully on her blog last year shortly after receiving her diagnosis, is not being treated for her Asperger's. For her, the knowledge helps put her life so far into context. She writes:
So what was the point in getting a diagnosis at this point in my life, when there’s nothing I can actually do about it? For me, it’s important to stop feeling like I’m faking my connection with other people on the spectrum. Before, I would only confess displaying “features” of Asperger’s, unsure if I truly qualified as part of the community. Now I know I belong.