Family members are often the primary caregiver for autistic adults and this responsibility may impact on the carer’s wellbeing and quality of life. 109 family members of autistic adults completed an online survey assessing their wellbeing relating to their caring role for their autistic relative. Family members who were supporting an autistic relative with co-occurring mental health difficulties and who they reported as unprepared for the future, self-reported higher levels of worry, depression, anxiety and stress, and poorer quality of life. These findings emphasise the importance of support for family members of autistic adults, whether through external services to support their relative or individual mental health support for the carer.
Little research has focused on autism in adulthood. Little is known about the concerns autistic adults may have, particularly about their futures, to inform support and social work practice.The objective of this study was to explore the nature of the worries autistic adults have about their futures. Four focus groups were conducted with autistic adults (n=23), where worries about the next 5 years and next 20 years were discussed. Participants also discussed what might be helpful and unhelpful to support them in preparing for the future. Transcripts were analysed using thematic analysis. The overarching theme emerging from the study concerned worries relating to uncertainty about what the future may hold. The main elements of this were worries relating to support needs, the impact of an autism diagnosis and knowledge of autism from others. Subordinate themes included worries about relationships with others, living circumstances and health. These data demonstrate that current support is perceived as insufficient. The implications for social work practice include autism awareness and focused practice-based support for autistic adults. The lack of autism specific knowledge amongst professionals and the general public was identified by research participants as a barrier in terms of accessing employment and healthcare.
Very little is known about autism and adulthood. Family members are often the primary support for autistic adults and frequently express concerns about what the future will hold and what support will be available for their relative. 120 family members of autistic adults completed an online survey exploring concerns about the future for their relative. The most endorsed concerns were "their needs won't be met" (77% worried weekly), "whether they will be happy" (72% worried weekly) and "who will care for them" (58% worried weekly). The results highlight the importance of implementing structured and timely support through collaboration with governmental policy, local commissioning and communication with charities to help prepare family members and their autistic relative for the future.
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