Students with Autism Spectrum Disorder and Their Parents in the Transition into Higher Education: Dynamics in Parent-Child Relationships

Background: The number of individuals with autism spectrum disorder (ASD) attending postsecondary education is growing. Compared to other disability groups, students with ASD in postsecondary education have reduced graduation rates, and face difficulties with managing the competing social and academic demands in postsecondary education, achieving appropriate time management and self-advocacy skills, and difficulties with regulating emotions and sensory issues. In addition to these challenges, many young adults with ASD lose the entitlement to formal supports services after they leave secondary education school. As a consequence, they rely on their parents who have to continue their role as the main source of support and care. This situation where parents hold persistent responsibility to provide support to their child may have a significant impact on family life. How the transition impacts on families caring for young adults with ASD has hardly been studied.

Objectives: The purpose of the present study was to gain a thorough understanding of how the higher education transition context impacts on dynamics in the parent-child relationship for students with ASD. In accordance with the aim of the study, we systematically investigated from a dialectic perspective both parents’ and students’ perceptions on college attendance, the perceived obstacles and the support needs, while focusing on the dynamic processes in the parent-child relationships.

Methods: Social Relational Theory formed the conceptual framework for this study as it represents an open-ended dialectical framework regarding dynamics in the parent-child relationship and provides guidance for exploring underlying micro processes of social transactions. Semi-structured interviews with senior students and first-year college students with ASD, their mothers and fathers (were analyzed based on grounded theory and dyadic analysis principles.

Results: Both parties were confronted with an abundance of challenges and experienced strong feelings of ambivalence, stress and anxiety. Differences in perspectives occurred regarding the construction of adulthood, the acquisition of autonomy, disclosure and subscribing to support services. These differences caused tensions in the parent-child relationship, hindering the transformation of the relationship into an adult-like mutual relationship.

Conclusions: This study was the first to examine the first-person accounts of students with ASD, their fathers and their mothers on a systemic within-family level. The dyadic interview analysis made it possible to carefully compare, reflect on and integrate the perspectives of the participating family members and in this way lifted our systemic understanding of the complexity of the transition process for families with a youngster with ASD. If the school setting, clinicians, and the wider network around the family, approach this complexity with mutual respect and understanding to both parents and the students with ASD, a strong partnership can be created which contributes to a more successful transition experience for these families. We emphasize the need for further clinical and educational reflection and research to forward our understanding on family functioning in families with a youngster with ASD.