What We Need: Parents' Understandings of Service Needs of Adult Children with Autism Spectrum Disorder

Background/Purpose: There is an increase in the number of adults identified with autism spectrum disorder (ASD). Typically, individuals with ASD require some form of lifelong assistance, leaving many adults with ASD reliant on both parents and formalized service. Despite ample research on children with ASD and their parents, very little published research exists on adults with ASD and their parents. This poster presents a qualitative analysis of interviews with parents of adults with ASD.  It describes services needed and received, types of support, and satisfaction with support.

Methods: This study is the follow up to a larger, quantitative study (n = 320) examining the experiences of a convenience sample of parents of adult children (18+) with ASD. Fifty-one parental caregivers ages 50 to 73 (46 mothers, 5 fathers) from 13 states participated in this study. The sample was primarily White, middle class respondents.  The profile of their adult children with ASD varied in social, communication, education, daily living, and employment domains.  The researchers conducted semi-structured interviews by telephone to understand parents' perspectives.  Interviews were transcribed and analyzed using grounded theory and line-by-line analysis using Atlas.ti 7 software. Two researchers coded independently and reached consensus when they disagreed on coding.

Results: Six themes emerged regarding parents’ experiences with formal services for their adult children with ASD: availability, affordability, accessibility, acceptability, accommodation, and awareness of services. These themes align with service findings previously reported (Penchansky & Thomas, 1981; Saurman, 2016).  The respondents most frequently indicated that services were inadequate from their perspective or from their adult child's perspective. Parents described difficulties associated with services that did not fit their adult child's level of functioning or were not comprehensive. They frequently recounted painful stories of services delivered by inadequately trained staff (e.g. home care assistants, respite care staff, educators). Availability of services was the second most frequently discussed theme, emphasizing the paucity of services in their region of the country. Respondents often were aware of more comprehensive in other states and sometimes moved to obtain those services.  Regarding availability, the biggest area of need was employment, followed by housing, and the need for case management services to support their adult children with ASD. Parents also expressed deep fears about the future for their adult children, indicating that their perceptions of existing services served as a barrier to making future plans for their adult child with ASD.

Implications: These data suggest a need for social work involvement in research and planning of services for this growing population. Perceptions of parental caregivers, who are the primary support people for adults with ASD, typically yielded a picture of a lack of acceptable and adequate services.  The findings support prioritizing development of training and employment opportunities for adults with ASD as well as focusing on recruitment, skill development, and adequate remuneration for staff who work with this population.  Without these changes, a growing population of adults with ASD is at risk for being socially isolated, unproductive, and dissatisfied.