In The Politics of Autism, I write:
Many analyses of autism speak as if it were only a childhood ailment and assume that parents are the main stakeholders. But most children with autism grow up to be adults with autism, and they suffer uniquely high levels of social isolation. Almost 40 percent of youth with an autism spectrum disorder never get together with friends, and 50 percent of never receive phone calls from friends. These figures are higher than for peers with intellectual disability, emotional disturbance, or learning disability. When school ends, many adults with autism have grim prospects. Though evidence is sparse, it seems that most do not find full-time jobs. Compared with other people their age, they have higher rates of depression, anxiety, bipolar disorder, and suicide attempts.
At
Autism, Michael Ayres and colleagues have an article titled "A Systematic Review of Quality of Life of Adults on the Autism Spectrum."
The abstract:
Autism spectrum disorder is associated with co-existing conditions that may adversely affect an individual’s quality of life. No systematic review of quality of life of adults on the autism spectrum has been conducted. Our objectives were as follows: (1) review the evidence about quality of life for adults on the autism spectrum; (2) critically appraise current practice in assessing quality of life of adults on the autism spectrum. We searched bibliographic databases and other literature to identify studies using a direct measure of quality of life of adults on the autism spectrum. Hand searching of reference lists, citation searching and personal communication with field experts were also undertaken. In total, 827 studies were identified; 14 were included. Only one quality of life measure designed for use with the general autism spectrum population was identified. Quality of life of adults on the autism spectrum is lower than that of typically developing adults, when measured with tools designed for the general population. There are no comprehensive autism spectrum disorder–specific quality of life measurement tools validated for use with representative samples of adults on the autism spectrum. There is a pressing need to develop robust measures of quality of life of autistic adults.
The perspective of autistic people on these issues can be quite different from that of non-autistic people. From the article:
[We] need to also be mindful that autistic individuals may value some experiences and activities more/less than people without ASD (Tavernor et al., 2013). For example, time spent on repetitive behaviours and on circumscribed or particular interests may be considered more desirable than some activities undertaken by typically developing adults; social and group activities may be valued less by autistic adults. Therefore, the items included in these specific domains of assessment tools developed for and validated with the general population may lack validity when used with autistic individuals.
