What an autism diagnosis in adulthood revealed

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Some Americans come to an autism diagnosis early, as young as 2 years old; yet for others, diagnoses are happening much later, sometimes decades into their lives.

The Centers for Disease Control and Prevention estimates that 5.4 million adults in the United States have autism spectrum disorder, about 2.2% of the population. While it is unclear why some diagnoses come later in life, many of the autistic adults the Free Press spoke with for this article said they were overlooked because they did not show some of the more obvious signs of autism, such as being nonspeaking. Social media may also be driving more adult diagnoses, as TikTok users, under hashtags like #lateinlifeautism and #actuallyautistic, share their journeys of self-understanding.

While their stories are unique, the people we spoke with shared some common themes. Many are women — boys are four times more likely to be identified with autism than girls — and many noted that they succeeded academically while struggling socially. They realized they'd spent years, even decades, masking their true selves, even to the point of exhaustion or breakdown. And almost all said they felt freed when they eventually identified as autistic. Some have identified through self-diagnosis, which means they do not have a formal diagnosis from a medical professional. Many neurodiversity advocates condone self-diagnosis, though some medical professionals believe a formal diagnosis is imperative.

The Free Press asked the subjects of this article their preference around terminology: Some did not have a preference while others asked to be called autistic. Some, in describing their journey, noted that they were first diagnosed with Asperger's, which is no longer a separate diagnosis in the diagnostic manual medical professionals use and now falls under the umbrella of autism spectrum disorder.

Ashley Marchuck, 32, Lincoln Park
"I was being set off by anything, I'd have to basically leave the building, in sweats, and have to calm myself down," she said.

Finally, Marchuck took a leave of absence. She still found herself consumed by anxiety attacks. And she started to suspect her issues were sensory, a common issue for autistic people where light, sound or other stimuli can prompt discomfort or overwhelm.

Both Marchuck and her mother started researching autism, and after a few weeks, decided to seek out a diagnosis in September 2022.

Growing up, Marchuck attended Catholic school, she said. And her classes were very small. She did well academically.

"I was not very social outside the classroom but in the classroom I was participating like crazy," she said. "I felt that I was being very social when in reality, I wasn't. So teachers, I think, didn't realize that there was something a little off there."

Since the diagnosis, Marchuck feels more in control of her behavior. She can prevent anxiety attacks by fidgeting more and understanding that loud noises and other environmental stimuli can trigger her.

She's found a support group, where she talks with other autistic people, joyfully sharing information about their interests — Marchuck is particularly interested in horror films and houseplants these days.

She loves cinema. And, someday, she'd love to combine her love of film with her interest in autism. She wants more people to talk about it.

Joe Alice, 30, Southgate
Alice was 18 when he was diagnosed with autism; he's 30 now. Through school, adults were aware that Alice had a learning disorder, but did not pick up on autism.

But in adulthood, Alice can pick out characteristics of autism within himself: He wears big, thick headphones over his ears when noises become overwhelming. He does what's called stimming, a repetitive physical movement, which brings comfort in times when he's stressed.

But Alice also still has to mask himself when he's around others.

"I try to mask if I get stressed out by noise, I have to try to act normal," he said. "If there's loud noise going on ... I wear my headphones. It still doesn't make me totally deaf so I can still hear noise. So even if it gets to be too much, I have to try to stay calm and not panic."

He has struggled for years to socialize. In school, he was good friends with another student who was autistic. At a recent event where people "speed-friended," Alice couldn't find another person who shares his interests: researching the American West and video games. He wants to move someday to Nebraska or Wyoming.

Alice's interests are important to him. They are interests he might not otherwise have had if he wasn't autistic.

"I just want people to be more understanding of what autism is," he said. "I've seen so many people be rude. I've seen so many people who use autism as an insult. ... There are some parts of having autism that I enjoy“

Nathaniel Vickers, 31, Sterling Heights
It was working with students in Detroit schools that led Vickers to an autism diagnosis as an adult, realizing that he shared characteristics with students around him. That helped his work: He understood why they would sometimes try to leave the school's premises, or why seemingly small issues like making a mistake on an assignment would lead to full-on behavioral outbursts. And it made him a natural at helping those students, he said. It felt like instinct.

"I'm effective at de-escalating," he said. "I can get them to chill out."

Vickers works with children with autism from ages 4 to 16 at a therapy clinic in Troy. He has two college degrees and two children. It wasn't until his early 20s when he first heard the word autism — at the movie theater, watching a film in the "21 Jump Street" series, where a character uses autism as an insult.

In Black communities in particular, Vickers said there is a stigma against autism, which can make a diagnosis difficult for some parents to accept, he has found. It can make helping a child succeed difficult, because it impacts their self-image.

"It's not just how other people see them, but it's also how they see themselves," he said.

Willow Moon, 27, Kalamazoo
Moon, who uses they/he pronouns, started to research autism, finding his way to a self-diagnosis.

"I realized that it's OK that I'm uncomfortable," he said. "I don't have to force myself to do things that other people think that I should be able to do."

Around the same time, Moon realized he was transgender. Many parts of Moon's life came into focus: He'd completed two years of high school online because he struggled to socialize with peers in-person. In college at Michigan State University, he had been overwhelmed by lecture halls filled with hundreds of classmates, where all he could hear were papers shuffling or students coughing. He ended up failing out, after a few years of struggling.

"I got overwhelmed at school and didn't know how to talk to people," he said.

It's been about two years since Moon realized he was autistic. Since then, he has focused on finding accommodations in his life to feel less anxious. He has found support groups and has learned to move his body in ways that put him at ease, like flapping his arms.

Moon is thinking about returning to school to finish his degree. This time, he knows to ask for help.

Yulanda Harris, 63, Detroit native
At 58, Harris was diagnosed on the autism spectrum, with Asperger's syndrome. Now 63, she's also a neurodiversity consultant, who advocates for, among other neurodivergent folks, adults with autism. The diagnosis was a breakthrough into explaining facets of her behavior she sometimes couldn't throughout her life. With that clarity came some heartbreak, she said.

"I have been called a drama queen; I have been called crazy; I have been called weird; I have been called stupid; I have been called gullible; I have been called strange; I have been called childish," she said. Adding later, "It was all because I didn't know how to ... manage my emotions or behaviors, and just didn't know who I was."

Harris felt like she'd masked her true self for a long time. In public, she still does to an extent — not rocking back and forth, a motion that feels comforting, or talking in a tone that sounds more monotone to others but natural to her. But she's learning to remove that mask, especially while at home, she said.

She's leaned into the habits and hobbies that relax her, like interior design, finding comfort in patterns, shapes and textures. She also has found empowerment in advocating for others with autism.

"It's a disorder that affects our brain development, but it is not a mental illness," she said, adding that the neurological condition may affect how people with autism interact with others, understand social cues and express emotions.

"On the other end of the spectrum, I have been called smart, brilliant, intelligent, kind, caring, empathetic, energetic, funny, entertaining, creative, silly ... sometimes the life of the party," she said. "So if you were to put all of that into one person, can you imagine?"

Faith, she said, is also important to her. She's grateful for the way she thinks, because she believes she has a "unique way" of seeing the world, and comes up with solutions to problems in creative ways.

"My autism is one of my greatest gifts that God has given me, and my faith is strong," she said.

She wants parents of autistic children to know that their child "is going to be OK.“

Kristen Harrison, 53, Ann Arbor
Harrison grew up to be a media psychologist; she's now a professor at the University of Michigan. In the 1990s, she read the book "Anthropologist on Mars," which includes a chapter about Temple Grandin, a well-known animal behaviorist who is autistic. Harrison saw parallels between the way Grandin described a struggle with socializing. But accepting that she might be autistic took time, Harrison said.

"A lot of us, when we start coming around to this feel that kind of a sense of imposter syndrome," she said. "Because I was just thinking, 'Well, come on, it doesn't get more privileged than being able to work on a Ph.D. and being able to pay your bills' ... so I don't have a right to call myself part of this sort of group."

But after she became a parent to three children, two of whom are autistic, she sought out a diagnosis in therapy. She was diagnosed with Asperger's.

"I really wanted to be able to say to them, 'we're autistic,' and not, 'you are autistic,' " she said.

Leah Wathen, 23, Kalamazoo
As a teenager, Wathen felt like an alien among her peers — wholly different than the people around her.

Now 23, Wathen understands those feelings more than she ever did at the time. It started during therapy amid the pandemic, with a question she posed to her therapist just as a session was about to end: "Do you think I might be autistic?"

She had already started the research herself: consuming TikToks, reading stacks of books she keeps on a shelf in her apartment in Kalamazoo. She sought out an assessment from a center in Grand Rapids, bringing in a stack of research articles and notes, feeling as if she needed to prove herself. Wathen was diagnosed a little more than a year ago.

"It was kind of a roller coaster of emotions, just trying to figure out who I really am," she said.

The diagnosis has shifted Wathen's worldview. For instance: all the times she'd masked facets of her own personality to fit in, trying to mirror others' personalities to camouflage herself socially. Understanding how autism can manifest has given Wathen more tools to help her unmask: to fidget more, flap her hands, or talk about the interests on which she has been fixated. Lately, that interest has been autism.

Teraysa Noyes, 33, Grosse Pointe Park
In 2018, Noyes experienced a series of strange mishaps: She walked into a wall and broke her pinky toe. She walked into a fence in the middle of a field and broke her nose. She was a physics teacher and her students were questioning her knowledge of physics. She was diagnosed with ADHD in 2018 and medication began to help, but she also realized she was struggling with sensory issues. She remembers feeling bothered touching a jacket at TJ Maxx.

"I got on TikTok and the algorithm did its thing," she said. "I really started to wonder, like, wait a second, there's a lot of women who were late-diagnosed."

Eventually, Noyes was diagnosed. And while the diagnosis came with relief, she also experienced a mourning period.

"If I would have known I was autistic, I wouldn't have stormed off the softball field in college my senior game because my coach said something that I didn't like," she said. "I wouldn't have had all of the meltdowns, you know, I would have had the support that I needed."

Since her diagnosis, Noyes has become very active on TikTok, sharing her diagnosis and experience as an adult diagnosed with autism with more than 40,000 followers.

"Every single day, I am trying to better understand myself. I am trying to advocate for others, advocate for myself, and give myself permission to not hold myself to societal norms that that are expected," she said.

Lee Sanchez, 23, Grand Haven
"I often felt kind of like an alien," Sanchez said.

In the past year, Sanchez has learned that autism is an important part of their identity. They've leaned into elements of their personality they once avoided, like the desire for sensory stimulation. Sanchez likes to scan the ground for rocks to collect and keeps a childhood blanket around for comfort.

Sanchez also feels strongly about workplace accommodations for autistic people. In April, Sanchez took a seasonal job in Yellowstone National Park in Wyoming. They have done office jobs from time to time, and found they would come home exhausted after several hours. Small accommodations, like headphones, made a big difference.

Michael Cramer, 67, Grosse Pointe Woods
Cramer used to work in computers but is retired now. He reads quite a bit, with a library of carefully collected leather-bound books. His house and living room are intricately decorated, furniture and decor that took a lot of time and money to collect.

He started to identify on the autism spectrum in 2012, after his husband noticed signs of the condition — Cramer has trouble interacting with people and he struggles when too many people are talking at the same time, like at a large party. Photos of Cramer from childhood show him smiling as a young child, while the smiles vanish as he gets older.

He has not sought out an official diagnosis, because he's not in search of any therapeutic intervention, he said. Cramer prefers the term Asperger's.

I think Asperger's is a spectrum and adding a spectrum onto a spectrum, it doesn't do it justice," he said.

The revelation helped Cramer feel more comfortable with the way he interacted with the world.

"It helped me not think of issues as problems," he said. "They're just part of the way I am. ... I'm able to accept and not have to question myself when other people are having difficulty understanding me."

Cramer's husband, Joe Kort, is a therapist and TikTok user with more than 600,000 followers. When Kort posted about being married to a man with Asperger's, 5 million people viewed the video and thousands commented. Cramer is not on TikTok but did answer questions during a livestream after the first video received so much attention. To Kort, Asperger's helped explain some aspects of their relationship, like when Cramer didn't always react or engage in conversations.

"I could always tell he was really trying. He really tries to be in a relationship," he said. "And that meant a lot to me, but it wasn't enough until I realized there was a limitation."