‘I definitely feel more in control of my life’: The perspectives of young autistic people and their parents on emerging adulthood

Abstract

Long-term outcomes studies often paint a discouraging picture of the lives lived by autistic adults. Yet, their outcomes are often measured against normative markers of traditional adult roles, which may not apply to autistic people making the transition to adulthood. Here, we investigated the transition experiences of a group of young autistic people who were followed from childhood. Twenty-six young people and their parents ( n = 28) participated in semistructured interviews on the process of transition and their aspirations for the future. Parents often voiced serious concerns about the ongoing support their children would require and the severe lack of services designed to support them as adults. Yet, overall, young people reported feeling more in control of their own lives, including developing a sense of identity and personal autonomy, both of which may be rooted in young autistic people’s executive skills and their ability to develop and maintain trusting relationships with others – two potential candidate areas for targeted support. These results call into question whether the traditional standards to which we often hold young autistic people are developmentally appropriate and suggest that the pressures of striving towards more normative ways of engaging in the world may be detrimental to their well-being.

Use of Work Systems to Increase the Independence of Adolescents With Autism Spectrum Disorder

“…To close the gap between what individuals with ASD and their families want for their future (Chen et al, 2019; Cribb et al, 2019) and what is actually happening (Shattuck et al, 2012), interventions that support functional independence are needed. The combination of two evidence-based practices—work systems and parent-implemented interventions—show promise to enhance independent initiation and completion of daily living tasks, and thus have potential to contribute to closing that gap.…”

“…Parents have noted concern because they either support their child in doing daily tasks (e.g., cooking, cleaning) and self-care, or supervise their child engaging in the tasks (Sosnowy et al, 2018). Parents have identified difficulties with initiation as well as with self-regulation and executive functioning skills as a challenge to their child's transition to becoming independent (Cribb et al, 2019). Independence is often listed as a challenge for individuals on the autism spectrum, especially as they age and expectations for independence increase into adulthood.…”

“…The presence of autism spectrum disorder (ASD) in no way lessens the importance of these goals and recent research indicates many adolescents and young adults with ASD have these same aspirations. In an interview study with 26 young adults with ASD almost all participants aspired to live independently (Cribb et al, 2019). These aspirations for independent living have been echoed by parents.…”

Experience of transfer from child to adult mental health services of young people with autism spectrum disorder

“…In contrast, a qualitative study identified a group of young people with ASD seen in childhood and interviewed them 12 years later. 22 The thematic analysis identified that the young people (at age 16-20 years) felt more in control of their own lives, needed to take one step at a time and valued their 'social connections with others'. Both these studies highlight the importance of the wider context for the young person, and that acknowledging the young people's need for more time to take on young adult roles and responsibilities, is likely to promote well-being and a sense of self-identity.…”

Documenting the untold histories of late-diagnosed autistic adults: a qualitative study protocol using oral history methodology

“…26 27 There is a limited understanding, however, of what a 'good life' means to autistic people and which factors play a critical role in helping them to participate in education, employment and community life, in the ways that matter most to them. 28 These factors, for the most part, have remained elusive, especially for those individuals without an additional intellectual disability. 27 29 Listening to, and learning from, the life histories of those who went through childhood without a diagnosis could serve better to inform diagnostic practices and ways of improving the lives of autistic people, though identification of risk and resilience factors and appropriate support.…”