For adults, autism diagnosis can unlock a new life

(CNN) — John Frizzell always had a feeling he was different.

The Hollywood film score composer could rattle off facts about chess puzzles, Immanuel Kant’s synthetic a priori knowledge and other esoteric subjects. He could go down philosophical rabbit holes and regale friends and family members with anecdotes about David Hume. His friends playfully referred to him as “Useless Information Man.”

In 2021, when one of his friends suggested that Frizzell get evaluated for autism, he decided he had nothing to lose. Several weeks later, a positive diagnosis provided an answer to the question with which he had wrestled for years.

“If you can imagine a mountain without a path, somehow I now have made the inklings of a road,” said Frizzell, who has scored films including “Office Space” and “Beavis and Butt-Head Do the Universe.”

He also has composed music for “Understanding Autism,” a documentary film about autism coming out later this year. “It was the first time in my life that I felt that someone liked the parts about me that were hard for me.”

The catharsis that Frizzell experienced is common among adults who are diagnosed with autism later in life.

For some, an adult autism diagnosis is an inflection point — the moment in which a clearer and more fulfilling existence starts anew. For others, it brings a blurred picture into focus. Whatever the perspective, an adult autism diagnosis is an identity builder, instantaneously minting new members of the growing autism community. This, in turn, can create a sense of belonging — a big deal for a community that continues to grapple with chronic loneliness.

An adult’s experience of autism

Autistic adults are everywhere. There are more than 5.4 million adults with autism in the United States, about 2.2% of the population, according to the most recent survey by the US Centers for Disease Control and Prevention in 2017.

A subsequent peer-reviewed study in 2022 estimated that about 1 in 45 adults in the United States are autistic — about 5.7 million people, based on 2020 census data.

While support services exist for autistic children, autistic adults are generally underserved, according to Lindsay Naeder, vice president of services and supports and community impact at Autism Speaks, a national autism support and advocacy group.

A 2023 report from the US Bureau of Labor Statistics demonstrated how stark this problem really is. Data indicated only about 21% of people with disabilities (including those with autism) are employed — the lowest employment rate for that subset of the population since data collection began in 2008.

This finding echoed a 2016 National Autism Society report that indicated the adult autism community was experiencing an unemployment rate as high as an estimated 85%.

There are other serious challenges to the mental health of autistic adults.

Research indicates that autistic people are more likely to experience feelings of loneliness compared with those who aren’t autistic. What’s more, studies have shown that up to 66% of autistic adults have thought about taking their own life, and an alarming 35% have attempted suicide.  

“Without some form of intervention, many autistic adults really struggle,” said Dr. Michael Chez, research pediatric neurologist at the Sutter Institute for Medical Research in Sacramento, California. “This is why a diagnosis can be so important.”

An autism diagnosis can be everything

Adults are seeking formal autism diagnoses in record numbers, according to providers and practitioners who specialize in autism. While they report that no formal data on diagnosis rates exists, these experts said interest in evaluations is higher than ever.

In many cases, waiting lists for evaluations and assessments can be anywhere from six months to two years long, and adult autism evaluations can cost anywhere from $3,800 to $5,800, according to providers. Depending on insurance, patients may have to cover some or all of this expense.

“Demand has increased many times over,” said Dr. Ingrid Boveda, a psychologist and founder of a Salt Lake City practice called The Hive.

Boveda credited social media with driving this trend, adding, “The more people are on social media, the more they are getting exposure to neurodivergent adults and what their experiences are like, and the more these young people are saying, ‘Hey, I’m like that’ or ‘That’s me.’”

And while there are well-established procedures of diagnosing autism in children, few specific diagnostic tests exist for adults.

Over the last decade, certain evaluations have become more prevalent in adult assessments; generally speaking, the names of these evaluations are convoluted. Some studies have suggested that Module 4 of the Autism Diagnostic Observation Schedule, Second Edition (psychologists call it ADOS-2), is useful for diagnosing autism in adults. Many providers use that and the Social Responsiveness Scale for Adults, Second Edition (SRS-2). 

But assessments are not essential for a diagnosis, experts say. Adults can be diagnosed by psychiatrists, psychologists and general practitioners who specialize in autism.

Dr. Quinten Harvey, owner of Harvey Psychological Services in Salt Lake City, said the evaluation of an adult leans heavily on standardized testing and direct observation, and should also incorporate feedback and observations from people who know the patient well.

“We don’t want only a single track of information; we want a global picture,” Harvey said. “It’s critical to have information from those who are familiar.”

Because there are no set diagnostic tests, many adults have opted to self-administer evaluations and lean on the results to diagnose themselves.

Self-diagnosis has pros and cons. On one hand, achieving an autism diagnosis of any kind can connect an individual to a broader community and help stave off loneliness. On the other hand, some within the autism community question the legitimacy of this approach and sometimes criticize those who do it.

Dr. Vanessa Bal, associate professor at Rutgers University’s Graduate School of Applied and Professional Psychology, said another potential negative aspect to self-identifying is that it does not allow access to resources that require professional diagnoses. She added self-diagnosis could unintentionally trigger other issues as well.

“Self-identifying individuals sometimes assume that their experiences are mostly attributable to autism,” said Bal, who is also the Karmazin and Lillard Chair in Adult Autism at Rutgers. “Therefore (they) could miss out on opportunities to get support for co-occurring conditions that could improve their mental health.”

Bridging the gaps

As autism and neurodivergence become more prevalent in society, more and more organizations are stepping in to provide equal opportunities for autistic adults.

Autism Speaks has an Autism Response Team that answers questions and provides tools and resources. Team members are also trained to help autistic individuals connect with post-secondary programs and employment services that specialize in neurodivergence as well as any other services and supports across the lifespan.

According to Naeder, the ART phone line logs nearly 65,000 calls per year; the program is set up to handle calls in Spanish, too.

In Los Angeles, The Ed Asner Family Center, a community center that provides programs for special needs individuals, has partnered with toy manufacturer Funko to provide a job training program through which young adults can gain real-world experience by working at the Funko store on Hollywood Boulevard. The program launched in January 2023.

Spencer Harte is one of the young adults in the program. Every Tuesday and Thursday, Harte works a regular shift at the registers, scanning prices and taking payments.

Harte, 25, described the experience as a “dream come true” and a great way to learn.

“I was into Funkos before this, but now, I’m really into them,” Harte said. “I’m also learning valuable skills for the work world. That will help me down the road.”

There are other efforts to make autistic adults feel included.

The Bay Area Autism Collective, based in San Francisco, offers weekly autism-affirming Zoom peer support groups led by autistic individuals. Founder and Executive Director Bird Sellergren said they started the group and the weekly support gatherings to make the adult autistic experience seem more connected, less isolated and something to celebrate.

“Getting an autism diagnosis, becoming part of the autism community, has completely recontextualized my life,” said Sellergren, who was diagnosed in 2021 at age 44. “I can look back at things that were confounding, put them in the context of autism, and they all make sense.

“I don’t feel like I have to fix myself. I don’t have this inherent sense that something is wrong with me. The diagnosis has allowed me to find my community and my people. That has been more validating than just about anything in my life.”

Matt Villano is a writer and editor in Northern California. Learn more about him at whalehead.com.

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