Transition to Adulthood for Young People on the Autism Spectrum

Background:

Transitioning to adulthood can be an exciting albeit challenging time for all, but particularly for those on the Autism spectrum. While many young people with Autism have average to above average intellectual capacities they are underrepresented in employment, further education and independent living, commonly experiencing poor outcomes common across the lifespan. The paucity of services for young people on the Autism spectrum and their families contributes to high levels of unmet need, with many struggling to navigate the transition process.

Objectives:

This study aimed to explore the views of parents of young people on the Autism spectrum on the enablers of transition to adulthood for this group.

Methods:

Four structured focus groups with 19 parents (14 mothers, 4 fathers and 1 step-father) regarding 23 young adults revealed 132 condensed meaning units. All but two parents held tertiary qualifications and 14 parents were in paid employment. Five of the parents were not in employment, citing their child’s diagnosis as the reason for their lack of workforce participation. In-vivo analysis identified the themes of to be understood, to understand the world and to succeed. Secondary analysis linked condensed meaning units to the International Classification of Functioning, Disability and Health (ICF).

Results:

The theme to be understood recognized the social marginalization of young people on the Autism spectrum due to their core symptoms. To understand the world pointed to the parents’ recognition that young adults on the Autism spectrum often experienced difficulties with social communication. These young adults needed opportunities to succeed in adult life, to demonstrate their strengths and build their self-efficacy. Secondary analysis revealed the theme to be understood mapped chiefly against the ICF domain of the environment (63%), and constructs within activity and participation domain (37%). The theme to understand the world mapped predominantly to the domain of the activity and participation domain (62%) with links to the domain of environment (38%). To succeed linked to the ICF domain of the environment (50%) and to constructs within the domains of activity and participation (42%) and personal factors (8%).

Conclusions:

This study highlighted parents belief that young people on the Autism spectrum are marginalised in part as a result of the social deficits associated with their diagnosis. Strengths-based individualised approaches, maximising the person-environment fit of these young people, are likely to facilitate successful outcomes in adulthood. Peer mentoring is one such approach, potentially reducing the need for parent’s to advocate on behalf of their young person on the Autism spectrum, positively impacting on this relationship. This study demonstrates the utility of the ICF in research in providing a framework facilitating data analysis, which in this study pointed to the environment as an important intervention target in supporting young people with Autism in their transition to adulthood.