Anemone's Research Emporium

Outcome (quality of life) in autistic adults

Anemone Cerridwen
April 16, 2009

The source: Lisa A. Ruble and Nancy J. Dalrymple, 1996. An alternative view of outcome in autism. Focus on Autism and Other Developmental Disabilities 11(1):3-14. Retrieved January 10, 2009 from http://www.starautism.louisville.edu/images/pdf/rubleanddalrymple1996.pdf

The authors follow-up on forty-six people with autism, thirty-three male, thirteen female, diagnosed under DSM-IIIR criteria in childhood. 84.7% were functioning in the mental retardation range at follow-up. Twenty-six (56.5%) were living with their families. The rest were living in institutions or other supported accomodation. Of the seventeen adults, eleven were receiving adult services: six in sheltered workshops, one in supported employment, two in activities of daily living programs, one in sheltered and community work, and one in activities of daily living and community work. None of the subjects were working or living independently.

However, from a quality of life perspective, outcome looked very different. Some of the subjects were very happy. They had supportive families who advocated for them, they lived in the community and participated in community events, and some of them were able to work, which meant a lot to them.

The researchers stress the importance of looking at quality of life in assessing outcome in autistic adults. Autistic people remain autistic throughout the lifespan, and continue to need structured support, even when things are going well. But when that support is there, autistic people can have a high quality of life, and that is what counts, not independence.

Note: If I emphasize independence elsewhere, it's because it sure is helpful when there is no social support available. Expecting autistic adults to fend for themselves is unrealistic. However, providing sufficient social support can make a big difference.