Diagnosis of autism in adults can lead to a fresh start.

Adult autism diagnosis can open doors to a fresh start.

A composer from Hollywood had a knack for rattling off obscure facts about chess puzzles, Immanuel Kant's synthetic a priori knowledge, and other esoteric subjects. He enjoyed delving deep into philosophical discussions, sharing stories about David Hume with friends and family members. They humorously referred to him as the 'Useless Information Man.'

In 2021, one of his friends suggested he get checked for autism. After several weeks, he received a positive diagnosis, which finally provided an explanation for something he had struggled with for years.

"Now I feel like I've forged a road in a mountain without a path," said Frizzell, who has composed scores for movies like "Office Space" and "Beavis and Butt-Head Do the Universe." He also composed music for a documentary about autism called "Understanding Autism" which is set to be released this year.

Receiving the diagnosis brought catharsis to Frizzell, an experience that's familiar to many adults who receive an autism diagnosis later in life. For some, it marks a new beginning, while for others it helps make sense of their lives. Regardless of their perspective, an adult autism diagnosis acts as an identity-builder, immediately welcoming them into the growing autism community. This sense of belonging can be particularly significant for a community that often grapples with chronic loneliness.

According to the latest CDC survey in 2017, there are over 5.4 million adults with autism in the US, comprising about 2.2% of the population. However, a study published in 2022 estimated that roughly 1 in 45 adults in the US are autistic - approximately 5.7 million people, based on the 2020 census.

Unfortunately, support services for autistic adults are scarce. As per Lindsay Naeder, vice president of services and supports and community impact at Autism Speaks, there is a substantial lack of resources for autistic adults compared to children with autism. The 2023 US Bureau of Labor Statistics report highlights how dire the situation is. It revealed that only 21% of disabled individuals (including those with autism) are employed - the lowest rate since data collection began in 2008.

A 2016 report from the National Autism Society found that as many as 85% of the adult autism community could be unemployed. There are also other serious mental health challenges peculiar to autistic adults. Research shows that autistic individuals are more likely to feel lonely than those who aren't autistic. Approximately 66% of autistic adults have considered suicide, and 35% have actually made an attempt.

Dr. Michael Chez, a research pediatric neurologist at the Sutter Institute for Medical Research in Sacramento, CA, highlights the importance of diagnoses: "Without some form of intervention, many autistic adults really struggle. This is why a diagnosis can be so vital."

The demand for adult autism evaluations has skyrocketed, as reported by specialists in the field. Unfortunately, wait times for assessments can range from six months to two years, depending on the location. The cost of an adult autism evaluation ranges from $3,800 to $5,800, and patients may need to cover a portion or the entire expense depending on their insurance coverage.

"The demand has increased exponentially," said Dr. Ingrid Boveda, a psychologist and founder of The Hive, a Salt Lake City practice. Boveda attributes the rise in popularity to social media, noting that "The more people are on social media, the more they are exposed to neurodivergent adults and their experiences. This leads many young folks to say, ‘Hey, that's me.'"

Despite the availability of procedures for diagnosing autism in children, few specific tools exist for diagnosing autism in adults. Some studies suggest using Module 4 of the Autism Diagnostic Observation Schedule, Second Edition (ADOS-2). However, assessments aren't necessary for a diagnosis. Adults can be diagnosed by psychiatrists, psychologists, or GPs specializing in autism.

Dr. Quinten Harvey, the proprietor of Harvey Psychological Services in Salt Lake City, expressed that the evaluation of an adult primarily revolves around standardized testing and firsthand observation. It is also necessary to include feedback and observations from individuals familiar with the patient in order to obtain a full understanding.

"We don't need just a single perspective; we require a comprehensive view," Harvey explained. "It's essential to gather information from those who are acquainted with the person."

Without established diagnostic tests, many adults have chosen to conduct their own evaluations and utilize the results to diagnose themselves.

Self-diagnosis possesses both advantages and disadvantages. On the one hand, acquiring an autism diagnosis could lead to an individual connecting with a wider community and potentially alleviating a sense of solitude. On the other hand, some within the autism community are skeptical of this approach and criticize those who undertake it.

Dr. Vanessa Bal, an associate professor at Rutgers University's Graduate School of Applied and Professional Psychology, remarked on another potential negative effect of self-identifying. She highlighted that it might prevent access to resources that necessitate professional diagnoses. Moreover, Bal stated self-diagnosis could unwittingly spark other issues.

"Those identifying themselves often suppose that their experiences are primarily due to autism," said Bal, who holds the Karmazin and Lillard Chair in Adult Autism at Rutgers. "Therefore, they could miss out on resources to address co-occurring conditions that could enhance their mental health."

Bridging the Divide

With the growing acceptance of autism and neurodivergence, more and more organizations are intervening to offer equal opportunities for neurodivergent adults.

Autism Speaks houses an Autism Response Team that responds to questions and provides tools and resources. The team is also trained to aide autistic individuals in connecting with post-secondary programs, employment services that specialize in neurodivergence, as well as any other services and support alternatives across the lifespan.

According to Naeder, the ART telephone line receives approximately 65,000 calls annually; the program is set up to accommodate calls in Spanish as well.

In Los Angeles, The Ed Asner Family Center, a community center providing services for individuals with special needs, collaborated with toy manufacturer Funko to initiate a job training program. Here, young adults can gain real-world experience by working at the Funko store on Hollywood Boulevard.

Spencer Harte, one of the young adults in the program, has been working regularly at the registers since its inception in January 2023. Harte, 25, characterized the experience as a "dream come true" and a tremendous opportunity to learn.

"I was a fan of Funkos before this, but now, I'm truly enthusiastic," Harte said. "Not just that, but I'm also acquiring valuable work world skills that will help me in the future."

Various attempts are being made to ensure neurodivergent adults feel welcomed.

The Bay Area Autism Collective, situated in San Francisco, offers weekly autism-affirming Zoom peer support groups led by autistic leaders. Bird Sellergren, the founder and Executive Director, established the group and weekly gatherings to make the experience of being an autistic adult seem more connected, less detached, and more to be celebrated.

"Receiving an autism diagnosis, entering the autism community, has completely altered my perspective on life," said Sellergren, who was diagnosed in 2021 at age 44. "I can reinterpret earlier experiences within the framework of autism, and they all make sense.

"I don't feel the need to change myself. I no longer harbor the underlying notion that there's something inherently wrong with me. The diagnosis has allowed me to discover my community and my peers. That has been more validating than virtually 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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Following his diagnosis, Frizzell began exploring various wellness practices to better manage his autistic traits. He discovered mindfulness meditation and yoga, finding that these activities helped improve his focus and reduce sensory overload.

The increase in adult autism diagnoses has led to a growing demand for wellness programs specifically designed for neurodivergent individuals. These programs often focus on stress management, social skills development, and sensory integration, providing a much-needed support system for many adults on the autism spectrum.

Source: edition.cnn.com