Life after School: Understanding the Transition to Adulthood from the Perspectives of Young Autistic People and Their Parents

Background: The majority of autism research focuses on understanding autism in childhood, which means that very little is known about the life chances of young autistic people as they transition into adulthood. The existing studies on this issue have consistently highlighted the striking variability in long-term outcomes of autistic individuals, even in individuals considered to be cognitively able. But the measures used to index a ‘good outcome’ are often quite crude in nature (e.g., proportion of individuals living independently, in paid employment etc.). Rarely has research sought to examine what a good outcome means from the perspectives of the individuals themselves or the people that support them.

Objectives: This study sought to understand the views and experiences of transition in a group of cognitively able young autistic people on the cusp of adulthood.

Methods: Twenty-eight cognitively able young autistic people took part in a 12-year prospective longitudinal study. In addition to standardized instruments, we conducted semi-structured interviews with 26 young people (M age = 17 years; 10 months; SD = 1;2) and 28 of their parents to elicit their views and experiences of school and their hopes and aspirations for their future lives. Thematic analysis was used to identify key themes.

Results: We identified three themes common to both young people and their parents’ interviews, including (1) challenges that young autistic people face during this period of their lives, (2) autism and “autistic” identity, and (3) factors facilitating positive outcomes. Parents highlighted several concerns, including about anxiety, difficulties with organization, problems with motivation and potential vulnerability. Parents also expressed considerable concerns about lack of friends and romantic relationships. The young people themselves were less worried about not having friends, as many were often keen to keep to themselves. Nevertheless, they all had clear ambitions and appeared to have an age-appropriate desire for increased independence. Indeed, many astutely noted the importance of “getting the right amount of support” – that is, the need to strike a balance between providing support and building capacity for being able to manage flexibly in a variety of contexts, especially important for life after school. Young people varied considerably, however, with regard to their views on being autistic and the role it had to play in their lives, with some identifying it as a challenge, others distancing themselves from the diagnosis (“I try to be as normal as possible”) and others still seeing it as a positive difference. There was agreement between parents and young people that “likeability”, strengths and interests and a drive to reach goals were key factors in promoting young people’s outcomes.

Conclusions: These findings shed light on the challenges faced by cognitively able young autistic people as they move on up into adulthood, especially the pressures – including from their parents – to conform to societal norms. The results further highlight the need to establish the most effective ways to prepare young autistic people for the potential obstacles they face as they make the transition to adulthood.