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.
A robust and growing evidence base has identified gaps in services and supports available to autistic adolescents and adults (Dudley et al., 2019; Kałużna-Czaplińska et al., 2018; Koffer Miller et al., 2018; Myers et al., 2015; Turcotte et al., 2016). The creation of services to meet the needs of this group is urgent, as the number of autistic youth aging into adulthood is growing (Schott et al., 2021a, 2021b; Shattuck et al., 2012). As autistic youth age, poor outcomes have been observed in multiple areas, including social and community participation, employment, interpersonal relationships, independent living, and overall quality of life (Henninger & Taylor, 2013; Roux et al., 2015; Shattuck et al., 2011, 2012; Sosnowy et al., 2018; Wehman et al., 2014). A recent meta-analysis found that approximately 50% of the autistic adults included in research studies did not achieve independence in those areas (Mason et al., 2021). Unmet needs for services to support social skills, adaptive skills such as self-care, self-acceptance, and other skill areas may result in barriers for autistic individuals to live independently and fully participate in their community (Cage et al., 2017; Henninger & Taylor, 2013; Kanne et al., 2011). Generating new service options to meet the needs of autistic adolescents and adults that can be funded by Medical Assistance, or Medicaid, is especially critical since it is a primary insurer relied upon by this group across the lifespan (Rizzolo et al., 2013; Schott et al., 2021a, 2021b; Semansky et al., 2011b).......The goal of this paper is to examine areas of feasibility (i.e., demand, practicality, and acceptability; Bowen et al., 2009) of an autistic-delivered peer support program aimed at enhancing self-identified goals for community outcomes among autistic adolescents and adults. The overall goal of the initiative, the Community Autism Peer Specialist (CAPS), is to promote independent living, participation, and social relationships of autistic youth and adults by addressing individual-identified needs and goals. The CAPS initiative involved the development of a first of its kind peer specialist training program designed by and for autistic peers, which we describe briefly, followed by a description of the CAPS program itself that employed some of the trained peer specialists. We examine the level of utilization of the CAPS services and characteristics of those who have participated in the CAPS program, such as age, co-occurring conditions, social functioning, and unmet needs, with a particular interest in assessing whether autistic individuals with more service needs are willing to seek autistic-delivered peer support services. We also demonstrate practicality through self-reported relationships between peer specialists and program participants in agreement on the goals and tasks and development of bond. Moreover, we evaluate acceptability by assessing both participants and peer specialists’ satisfaction with the program. This information is critical to informing future efforts aimed at expanding the availability of similar peer support initiatives for autistic individuals focused on enhancing community outcomes.
We provide empirical data about the feasibility and acceptability of an autistic-delivered peer support intervention for transition-age youth and adults. Data from 29 participants who were referred to the program suggest that s. Participants were generally highly engaged in the services and reported high levels of satisfaction with most aspects of the program.