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Sunday, January 24, 2021

Reviewing the Literature on Autistic Adults

In The Politics of Autism, I write:

When disabled people reach their 22d birthday, they no longer qualify for services under IDEA. ... People in the disability community refer to this point in life as “the cliff.” Once autistic people go over the cliff, they have a hard time getting services such as job placement, vocational training, and assistive technology. IDEA entitles students to transition planning services during high school, but afterwards, they have to apply as adults and establish eligibility for state and federal help. One study found that 39 percent of young autistic adults received no service at all, and most of the rest got severely limited services.

Patricia Howlin has an article at The Journal of Autism and Developmental Disorders titled " Adults with Autism: Changes in Understanding Since DSM-111."


Over the past four decades there have been significant advances in our understanding of autism, yet services for autistic adults continue to lag far behind those for children, and prospects for employment and independent living remain poor. Adult outcomes also vary widely and while cognitive and language abilities are important prognostic indicators, the influence of social, emotional, familial and many other factors remains uncertain. For this special issue marking the 40th anniversary of DSM-III, the present paper describes the changing perspectives of autism in adulthood that have occurred over this period, explores individual and wider environmental factors related to outcome, and suggests ways in which services need to be changed to improve the future for adults living with autism.

In the four decades since the publication of DSM-III (American Psychiatric Association [APA] 1980) there have been many changes in our understanding of autism. We now know much more about how reliably to diagnose the condition; underlying genetic and neuropsychological processes are far better understood, and the quality of intervention research- at least with respect to young children- has greatly improved. Nevertheless, very many autistic adults, and their families, continue to face significant difficulties in their daily lives. To mark the 40th anniversary of DSM-III, the following article focuses principally on research conducted over the intervening period that has changed our understanding of autism in adulthood. Variables related to prognosis, challenges experienced in adulthood, and interventions that may help to reduce these are explored. The paper concludes with recommendations for improving quality of life for autistic adults and those living with or caring for them.

From the article:

It needs to be acknowledged that the quality of research on interventions for adults is far inferior to that for autistic children, especially very young children. Thus, although there is some evidence of potentially effective interventions to improve adult social functioning and mental health, the variability and complexity of the treatments involved means that we still know very little about the specific components of services or therapies that are crucial for success. Evidence of methodologically sound and ecologically valid interventions and services is limited, and far greater funding and dedicated research is required to redress the current imbalance between child and adult research and access to effective interventions.