Date Published: November 14, 2023
In elementary school, Ariel sat alone at a desk in the closet. She could see the class through a two-way mirror, but no one could see her.
She doesn’t remember if it was a punishment, but she preferred it. She could work alone, away from the social stresses that caused emotional meltdowns or nausea in the classroom. “I was just weird,” she says now, three decades later.
What she really was ─ she learned two years ago ─ was autistic. She is among a number of autistic adults over age 35 who came of age before autism was widely recognized and diagnosed. They often struggled without extra help in school or understanding in their communities. Many were bullied, sometimes relentlessly, by classmates who sensed their differences.
Sometimes they believed the names they were called on the playgrounds and in the hallways. “I still call myself an idiot from time to time. I had this inner voice that said I was worthless, I wasn’t capable, I wasn’t likeable, I wasn’t worth anybody’s time,” says Diana, 59, who was diagnosed nine years ago.
“I Didn’t Start Living Until I Got the Autism Diagnosis”
For Diana and others like her, getting an autism diagnosis in adulthood led to a new understanding of themselves, ending the confusion or self-doubt they felt growing up.
“It was a huge relief that there’s a name for it, and it encompassed all of my traits,” says Diana, who works for the military.
The diagnosis changed the life of artist Vonda Burris, too. “I didn’t start living until I got the autism diagnosis,” explains Burris, 36, who was diagnosed three years ago.
After receiving a professional diagnosis, Burris and others interviewed joined SPARK, the largest study of autism. They are among about 22,000 autistic adults and 102,000 children, in addition to their family members, who participate in SPARK.
About half of the autistic adults were diagnosed when they were older than 17, some in their 30s, 40s, and 50s. Some, like Ariel, sought a diagnosis for themselves after their child was diagnosed with autism. Other adults benefited from a public awareness of autism that did not exist when they were growing up.
Diana read a book about girls with a milder form of autism. She recognized herself in those pages, “So much of what I read mirrored my experiences as a child and young adult,” she recalls.
What Did Autism Explain?
The autism diagnosis explained so much that had previously puzzled them, several adults say. At its core, autism causes differences in how people respond and communicate in social situations. Other important signs are repetitive behaviors; over- or under-active responses to hearing, touch, and other senses; and a need for sameness.
Autism, Diana learned, was why she would stay awake late into the night, when everything was quiet. It was why she would abruptly leave a social gathering when she felt overwhelmed and exhausted.
Autism was why Ariel did not absorb the unwritten rules of friendship as a child. Like the time another girl announced she would not eat her lunch because she was “fat.” What that girl really meant was that she wanted everyone to tell her that she was thin. But Ariel did not know that, and she asked if she could have the rejected lunch. The reaction was swift: “I was ostracized and called ‘mean’ and ‘not cool,’” Ariel recalls. “I was always a step behind in catching up to the girls’ social interaction.”
The Journey to an Adult Autism Diagnosis
While autism helped to explain aspects of their lives, some adults say, the ease and process of getting a diagnosis varied widely. Some say that their insurance companies helped them find the right doctor or psychologist to evaluate them. Others, however, say that they had problems with insurance, cost, or finding a healthcare provider who was experienced with adult autism.
Autism appears in early childhood, when it’s usually diagnosed, and many autism specialists only see children and teens. Some psychologists and psychiatrists who just see adults may not be experienced in diagnosing autism.
And autism may look different in adults. They may no longer have the “red flags” of childhood autism, such as poor eye contact and problems having a conversation, said psychologist Vanessa Bal, Ph.D., during a webinar for SPARK.
That may be because their social communication skills have developed over time, she said. Also, some adults have learned to camouflage, or hide their autism traits, in order to fit in during social situations, Bal said. Camouflaging makes a person’s autism appear less visible to others.1, 2
“For autistic adults, the presentation of autism, what autism ‘looks like,’ may look quite different from what people in the general public might expect, and even professionals who are more familiar with autism in children,” Bal said.
Vonda Burris understands how misunderstandings about adult autism may affect an evaluation. During her first attempt at getting a diagnosis, a doctor asked her why she thought she was autistic. After they spoke for 45 minutes, the doctor told her, “I don’t think you have autism.” His reasons? “‘You went to college, you’re a mother, you can communicate,'” she recalls him saying.
Burris was frustrated that her ability to camouflage or mask her autism may have made it harder to be diagnosed. “I lived thinking I was neurotypical for 33 years. I perfected my mask,” she says.
Burris did not give up. She eventually found a hospital clinic that gave her psychological tests and surveys that measured autism traits, among other things. Only then did she get an autism spectrum diagnosis.
What Might an Assessment for Autism Include?
What happens during an autism assessment may vary, depending on the type of healthcare provider conducting it, the reasons for the evaluation, and whether it is the first time a person has been assessed.
Bal, the psychologist, outlined the typical parts of many autism assessments in her webinar. The provider will observe the person’s social and communication skills, administer language or cognitive tests, and ask about developmental, school, job, and mental health histories. The provider also will ask about their interests, self-care habits, relationships, strengths, and challenges. Relatives, friends, and partners may also be asked questions about them, she said.
Some wonder whether all those components are necessary, she said. Those steps help the healthcare provider to recommend supports and accommodations that are based on someone’s individual needs, she said. “It doesn’t tell us much of anything to know that someone has autism, in and of itself,” she explained.
What Comes After an Autism Diagnosis?
An autism diagnosis in middle age may bring relief for some, but it usually does not result in the services and supports that often follow a diagnosis made in childhood. Some adults say finding doctors, therapists, and organizations that can help them is challenging.
Emma Goldman-Sherman, a playwright, says she was on her own after her autism diagnosis at age 55. “When I was diagnosed, the doctor said that obviously I had low support needs and was doing just fine, but clearly this is not the case,” she says. “Since I am a published author, the doctor just assumed I was fine.”
The therapists she found were expensive and had a long wait list for new clients, she says. “I am trying to maintain health and cognitive gains and ability to empathize, etc., in a kind of a vacuum. I would love some guidance, direction, signs, anything!”
Finding Community With Other Autistic Adults
One source of help, at least for some, is connecting to other autistic adults. Burris, for one, found community and information online. As her knowledge of autism grew, she stopped feeling bad about her social differences. “There was trauma from not understanding your own idiosyncrasies and your own behavior, and hating yourself for not being like others all the time,” she says.
“Learning about autism and getting a diagnosis was like getting the instruction manual on how to be human,” she adds. “Once I read about autism and understood it and became part of these autism communities, it gave me the ability to say ‘I’m OK the way I am.’ It allowed me to embrace myself and love myself.”
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