Examining the transition to adulthood in autism spectrum disorder: examining the perspectives of autistic individuals, caregivers and service providers

David B. Nicholas, Theresa Jubenville-wood,Rosslynn T. Zulla, Katelyn Lowe,Lonnie Zwaigenbaum

ADVANCES IN AUTISM(2023)

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摘要
PurposeThe purpose of this study is to examine how the search for transitional services has been characterized as a challenging experience for autistic youth and their families. Transitional services are reported to be inconsistent and do not address the range of needs that autistic individuals have. Design/methodology/approachIn this study, qualitative interviews were conducted with autistic individuals (n = 31), their parents/caregivers (n = 23) and transition-based service providers (n = 10). FindingsFindings invite capacity building across sectors, including working with both the autistic individual and their caregiver, and ensuring targeted services commensurate with individual needs related to autism and ancillary challenges. Implications and recommendations for service and system advancement are offered. Practical implicationsCurrent services were reportedly insufficient in meeting the needs of autistic individuals as they transitioned into adulthood. Service areas needing to be bolstered include daily life, community engagement and employment. Capacity building and enhanced training are required. Information and communication strategies require advancement. Social implicationsA more responsive system is required, which involves support from many societal sectors (e.g. health, mental health, advanced education, social services, industry, housing and justice) over the lifespan. Policy adjustments and organizational mandates need to be reviewed to better consider the needs of transitioning autistic youth and allocate resources accordingly. Partnerships across stakeholder groups are needed. Originality/valueThis study provides details on a known but not well understood issue of transition to adulthood for autistic adults. This study is unique in providing first-hand data from transitioning autistic adults, with corroborating data from families and service providers.
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关键词
Autism,Families,Youth,Adults,Transition services
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