Foster Youth with Autism Spectrum Disorders Making the Transition to Adulthood: Perceived Barriers and Facilitators to Independence

Background and Purpose: This interpretive study explored the perspectives and experiences of a small sample of foster youth ages 18 to 21 with ASD in one state child welfare system. Prior research in IL identified a higher prevalence of ASD among children entering foster care for the first time than in the general population (Bilaver & Havlicek, 2013). Findings additionally revealed that these children stayed in care longer than children without ASD. A longer length of stay may mean a higher likelihood of leaving the child welfare system through adoption, guardianship, and/or aging out. By focusing on the specific case of transition aged youth in foster care with ASD, we hope to learn about the barriers and facilitators of the transition to adulthood from the perspectives of foster youth with ASD themselves.

Methods: In-depth interviews were completed with 13 foster youth between the ages of 18 and 21. This represents 59% of the 22 adolescents identified as being eligible during the recruitment period. Interviews were professionally transcribed and downloaded into NIVO. A sample of interviews was selected to develop a codebook with codes grounded in the data (Glaser & Strauss, 1967; Charmaz, 2006). The initial codebook was applied to the remaining interviews. Two researchers compared coding and discussed discrepancies.

Results: This study found that the young adults we spoke with experienced their development in the context of a tension between normality and abnormality. On the one hand, these 13 foster youth had long-standing clinical histories involving hospitalizations, alternative schools and self-contained classrooms, psychotropic medications, and residential treatment. On the other hand, all of the youth in this study expressed a strong desire for normality in their lives. Because most of the youth in this study desired social integration as opposed to social exclusion, they sought out opportunities to participate in social events that mattered to them, which was not always encouraged by caregivers, staff and service providers. Coping with this tension is what we call “vital determination.” Three interrelated mechanisms within child welfare systems support and/or thwart the capacity of foster youth to achieve a sense of normality in foster care:  knowledge of mental health and developmental needs; (dis)abling roles and identities by others; and service supported transitions to work and school.

Implications: The findings from this study highlight the ways in which ASD may be overlooked and/or poorly understood by caregivers and service providers when it co-occurs with other developmental and mental health disorders. The hopes and dreams of these young people to live a vibrant social life suggest that greater awareness of ASD and integration with treatment and transition planning would go a long way to supporting transitions to education and employment.