When a child is diagnosed with autism, there is a period of mourning for what might have been. It could be likened to Elisabeth Kubler-Ross’s five stages of death and dying: denial, anger, bargaining, depression, and acceptance.
When an adult is newly diagnosed with autism, it is likely to be a relief, the steadying of putting a name on a problem, the door to a more fulfilling life, and a kind of catharsis. Life looks clearer, its blurry focus becomes sharp. It’s an identity that fits, that comes with community, which can satisfy a life-long yearning, finally, for a sense of belonging.
A peer-reviewed study based on 2020 census data estimated that one in 45 adults in the U.S. are autistic. That’s about 7.5 million people. Unlike autistic children, autistic adults are usually underserved.
The U.S. Bureau of Labor Statistics reports that only 21% of adults with disabilities (autism included) are employed. The National Autism Society reported in 2016 that the unemployment rate among autistic adults was as high as 85%. Up to two-thirds of autistic adults have considered suicide, and 35% have attempted to take their own lives.
Autism is a developmental disorder that affects communication, social interaction, and behavior.
Adults are seeking formal autism diagnoses in record numbers. Specialists in autism report that although no formal data on diagnosis rates in adults exist, interest in evaluations is higher than ever.
Waiting lists for evaluations can be six months to two years long and cost anywhere from $3,800 to $5,800, according to providers. Insurance coverage varies.
Experts say social media seems to be driving this trend. On social media, people are exposed to neurodivergent adults and their experiences and see themselves in those images.
While there are well-established procedures for 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.
Others use the Social Responsiveness Scale for Adults, Second Edition (SRS-2), or both. Experts say that assessments are not essential for a diagnosis. Adults can be diagnosed by psychiatrists, psychologists, and general practitioners who specialize in autism.
