To be understood: Transitioning to adult life for people with Autism Spectrum Disorder

Abstract

IntroductionThe purpose of this study was to explore the viewpoints of parents of young people with Autism Spectrum Disorder (ASD) in relation to their child’s transition to adulthood.MethodsData were collected during four structured focus groups with 19 parents of young people with ASD with average to high intellectual capacities. Condensed meaning units were identified and checked during focus groups, and were subsequently linked to the International Classification of Functioning, Disability and Health (ICF).ResultsThree major themes emerged: to be understood, to understand the world and to succeed. The ICF domains of activity and participation and environmental factors emerged as having the greatest potential to influence transition outcomes.ConclusionsPolicies and services should focus on strengths to maximise participation in higher education, employment and independent living amongst young people with ASD. Interventions targeting environmental factors could be effective in improving participation in adult life. Person-centred and individualised approaches could further complement this approach supporting the transition to adulthood for people with ASD, ultimately improving outcomes in adulthood.

A realist evaluation of peer mentoring support for university students with autism

“…These barriers continue even though universities offer supports to students who require them. Parents of young people with ASD believe they need to understand the world better in order to succeed (Thompson et al, ). The results of the present study suggest that this is difficult in the university context, a complex environment with many social and environmental challenges for young people with ASD (Knott & Taylor, ).…”

“…Parents have indicated that a lack of understanding of the abilities of and challenges facing their young people with ASD has a detrimental impact on their opportunities to participate in major areas of life, such as education (Thompson et al, ). The present study suggests that when these abilities and challenges are recognised, and interventions are targeted towards individual needs, education outcomes can be improved.…”

“…This also enabled the successful management of the university environment. Students with ASD benefit from being understood as individuals and from strategies tailored to their individual needs (Thompson et al, ). As demonstrated in previous studies, the strategies used within the SPMP assisted university students with ASD to develop social competence within the education setting (Bradley, ).…”

Proof of concept: The TRANSITION program for young adults with autism spectrum disorder and/or attention deficit hyperactivity disorder

“…This body of research highlights the significance of the physical and social environment, the need for a gradual transition to a diverse support, and the importance of comprehensive and integrated services [23]. Some additional themes have been identified in recent studies: to be understood, to understand the world, and to succeed [24]; uncertainty about the future, and a lack of guidance [25]; balancing security and autonomy, holistic support needs, and work as a source of engagement and empowerment [26]. Further, a study on different viewpoints on how students with autism can best navigate university emphasised the importance of individualised and contextual support [27].…”

“…The transition from adolescence to adulthood is a crucial time of change in most people's lives, bringing dramatic transformation of virtually every major life domain. The phase of life coined emerging adulthood (approximately ages [18][19][20][21][22][23][24][25] is characterised by opportunities to explore roles and relationships [1], but also increased demands on independence and associated risks such as unemployment, truncated education, dependence on parents, loneliness, onset of mental health conditions, and sedentary lifestyles [2][3][4].…”