What Leads to the Good Life for Autistic Adults? Nobody Knows.

Lack of Systems-Level Evidence Hampers Progress in Service Delivery

People with autism live most of their lives as adults, yet almost all research – 98% – has been done on children. And what meager research on adult outcomes exists has generally focused on the individual or family – on skill development or caregiving approaches, for example. Yet studies on health challenges across many fields have shown that community- or systems-level capacities – the services offered, innovation in programs, case coordination, financing – are vital components to achieving sufficient quality of life.

Surprisingly, there are few studies evaluating programs and services for autistic adults, reports a new study by researchers at Drexel University and UCLA. A concern, the authors note, since an estimated 700,000 to 1.1 million youth with autism will become adults in the next decade.

Paul Shattock and colleagues, in “Services for Adults With Autism Spectrum Disorder: a Systems Perspective”, found only 52 studies over the tens of thousands published between 2013 and 2018 which focused on services for adults on the spectrum. Most of these studies pertained to a limited set of topics, like employment or social participation. Many gaps existed in including or specifying key subroups, like severity level, socioeconomic status, and presence of co-occurring conditions. Most study populations were largely male and white.

“We found no studies rooted explicitly in improvement science—the study of identifying, implementing, evaluating, and disseminating strategies to bring about incremental improvements in system performance,” state the authors. “These approaches have a record of improving systems of care in other vulnerable populations and complex care ecosystems.”

The study makes two recommendations for future research: (1) identifying how community- and systems-level determinants influence outcomes and then measuring outcomes at a population-level and (2) increasing the involvement of community stakeholders, including autistic advocates and family members, in the improvement of service systems. Service providers can perceive their work in a more positive light than the actual recipients of those services, so including the autism voice is important. Service users are also able to identify gaps in services that providers or researchers are not aware of.

The paper presents a stark conclusion: “the small size of the extant research coupled with inconsistent quality prevents the accumulation of new knowledge in ways that would significantly inform the improvement of systems of care for the growing population of adults on the autism spectrum.”

Reference

Shattuck, P.T., Garfield, T., Roux, A.M. et al. Services for Adults With Autism Spectrum Disorder: a Systems Perspective. Curr Psychiatry Rep (2020) 22: 13. https://doi.org/10.1007/s11920-020-1136-7

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