ATLANTA (AP) — Natasha Nelson, a 35-year old entrepreneur in Stone Mountain, Georgia, didn’t have an innate sense of social norms. She didn’t know why people meeting for the first time would choose to engage in small talk instead of deep conversations, or why people like to make their beds.
Then, a few years ago, she was diagnosed with autism, just after her youngest daughter received the same.
“If your life has always felt like it was in chaos and you don’t feel comfortable and you don’t feel like you thrive and you just feel like you’re constantly surviving and going from one thing to the next, what you got to lose?” Nelson said, encouraging people to seek a diagnosis.
Common signs of autism include trouble with social communication and a fixation on certain routines or topics — Nelson says “people have become my special interest now” — and may go unnoticed during someone’s childhood.
But it can be costly and difficult to obtain an autism diagnosis later in life due to a shortage of medical professionals trained to work specifically with adults. Here’s more information on what you should know about adult autism diagnoses.
What is autism and when is it usually diagnosed?
Autism spectrum disorder is a range of intellectual, language and social difficulties, like rigidly following routines, having fixed or obsessive interests and struggling to hold eye contact or understand nonverbal communication. Autism is typically diagnosed during childhood, and the American Academy of Pediatrics recommends all children be screened as early as 18 months.
Why are more adults being diagnosed with autism?
More adults have sought insight on their own neurodiversity in the last decade — often after their children are diagnosed or after seeing social media posts. A study published last year in JAMA Network Open showed a 452% increase in autism diagnoses among adults age 26 to 34 from 2011 to 2022.
Some traits of autism can go unnoticed until adulthood, when there are new social demands. Others may have learned how to hide certain behaviors, known as masking.
“Adults have learned to compensate over time,” said Whitney Ence, a psychologist at the University of California San Francisco who works with autistic adults. “They may have learned like ‘I can’t display that in public, and so I do that in private.’”
There’s also an overlap of symptoms between various disorders like ADHD and OCD that can complicate an autism diagnosis due to difficulties with nonverbal social cues or executive functions like attention span, working memory and problem-solving.
What are the symptoms of autism in adults?
Symptoms present differently for everyone, and many of the traits are common for people without autism, like enjoying routines or enjoying going down rabbit holes of information.
But to meet the diagnostic definition of autism, the symptoms must cause significant impairment, said Dr. Arthur Westover, a psychiatrist who specializes in autism at the University of Texas Southwestern Medical Center.
“We’re human beings in general. We like routines … just having a bit of pleasure and feeling better with routines does not mean you’re autistic,” Westover said. “It goes a little bit deeper than that.”
Russell Lehmann, 34, has lived with his autism diagnosis for more than 20 years. The motivational speaker has routines that he describes as both comfortable and stressful. Eating the same food and buying the same groceries, he said, brings him comfort. But if he skips going to the gym for an hour and a half every day, he becomes overwhelmed with feelings of depression and failure.
“It’s like no gym, no day,” he said. “… My routine is an incredibly existential burden, because every night I go to bed knowing I have to do a routine I do not like simply to function.”
How does a diagnosis work?
While there are various online screening tools, autism is a complex diagnosis, so experts recommend talking to your primary care physician for a psychiatry referral.
That psychiatrist might want to interview people who were present in your early childhood, like family and friends, who can attest to symptoms being present at that time.
Some psychiatrists may refer you to a psychologist, who can give you a standardized diagnostic autism test or will use their own clinical judgement. There is no brain scan or blood test for autism.
Getting an autism diagnosis as an adult can be costly and take some time. Westover said there’s a major shortage of specialists who work with autistic adults. Nelson’s diagnosis took three years and she paid more than $3,000 out-of-pocket.
Ence also suggests that you ask yourself a few questions when considering getting a professional diagnosis, and to know that you may run into a waitlist: “What is leading me down this pathway to think that I need a professional diagnosis? Do I need access to services? Are there services I don’t have available to me?”
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