Adolescence and the Transition to Adulthood for Individuals with Autism Spectrum Disorders: A Qualitative Interview Study Examining Multiple Life Domains

Adolescence and the transition to adulthood are associated with a host of individual, family and contextual changes. Individuals and families affected by Autism Spectrum Disorders (ASDs) face both similar and unique issues during these developmental phases. The present study examines qualitative intensive interview data from 5 families (caregiver N=7; individuals diagnosed with Autism Spectrum Disorder=5; siblings=4) in order to uncover the issues faced by individuals on the spectrum and their families as they make the transition to adulthood. Results reveal a host of individual, family relationship and community level factors that may enhance or impede success in multiple life domains. Implications for social work practice and future research are discussed.

Background and Purpose: Adolescence and the transition to adulthood are associated with a host of individual, family and contextual changes that provide both opportunities and challenges for development. Individuals and families affected by ASDs face both similar and unique issues during these developmental phases, yet there is a dearth of research uncovering these issues from the perspective of multiple family members and individuals on the spectrum themselves. The purpose of this study is to gain a perspective on the experiences of these individuals and families in order to enrich our understanding of relevant individual, family and community factors associated with a positive transition during this time of life and family life cycle.

Methods: Information for this study was obtained through in-depth qualitative interviews of adolescents and young adults diagnosed with an Autism Spectrum Disorder, as well as their caregivers and siblings. In total five families were interviewed (caregiver N=7; individuals diagnosed with ASD=5; siblings=4). All participants were interviewed at a location of their preference, and the interviews were conducted by experts in the field of Autism. Interviews were audio-taped and transcribed, and coded for themes across multiple life domains.

Findings: Individuals revealed a number of challenges facing individuals diagnosed with ASD as they transition to adulthood.  Participants revealed a lack of resources for individuals diagnosed with ASD to assist them to transition to adult services such as employment, healthcare, and higher education. A lack of services focusing on family members was also discussed. Interviews also revealed that having a family member with ASD can have a large effect on family relationships, including sibling and caregiver relationships. Community supports were also revealed to play a large role in assisting in the transition to adulthood; many of the individuals diagnosed on the spectrum stated that they were engaged in the community through volunteering, part-time employment, and hobbies.

Conclusion and Implications: Interviews reveal a need for greater resources to assist individuals diagnosed with ASD with the transition to adulthood. Findings also reveal the need for greater supports for siblings and family members of individuals diagnosed with ASD. Implications of the present findings for more extensive research focused on individual, family and community factors associated with a positive transition to adulthood are discussed.