Abstract
Autistic children grow to become autistic adults, and autism is increasingly diagnosed in adulthood and later life. This qualitative study aimed to understand experiences of autism throughout adulthood. A national cohort study of autistic adults and relatives of autistic adults (ASC-UK), enabled purposive recruitment of a diverse sample. Semi-structured interviews were conducted with 29 autistic adults (aged 20-71 years), mostly diagnosed in adulthood, and 16 relatives (aged 31-81 years) of autistic adults diagnosed across both childhood and adulthood (including some with learning disability). Interview topics included health, relationships, education, employment, quality of life and everyday experiences. Thematic analysis of the accounts of the autistic adults identified six key themes relating to their experiences: (1) diagnosis as validating yet limiting; (2) supportive and non-supportive social agents; (3) the "invisibility" of the needs of autistic adults; (4) health in the context of autism; (5) staying 'outside' the circle; and (6) multiple lives with autism. Data from relatives about autistic adult experiences gave additional perspectives on these themes. Experiences reported in other studies-of 'difference' from others, challenges of social engagement, and learning to 'conform' to society's expectations-were evident and relevant to male and female autistic adults, across all age groups, and unrelated to stage of life when diagnosed. Some expressed disappointment with their lives, but others were proud of their achievements. Education and employment, whilst challenging for many, were also rewarding for some. Health care and social services were often experienced as inaccessible, inappropriate, or lacking understanding of the individual's needs. We conclude that greater public understanding of autism as experienced in adulthood is needed. Key priorities are improving the availability of 'appropriate' health and social care services for autistic adults and families, and providing practical support to enable enhanced participation in life.
Highlights
It is estimated that around 1% of the UK population has autism [1,2]
We report findings from the main qualitative study, that aimed to gain a better understanding of the everyday experiences of autistic adults through first-hand accounts from autistic adults and from relatives interviewed from the perspective of supporting autistic adults
Autistic adults had a clinical diagnosis of autism given from age 6–67 years; two adults received their diagnosis in childhood
Summary
It is estimated that around 1% of the UK population has autism [1,2]. Autism is a lifelong neurodevelopmental condition and while those presenting with more severe characteristics are likely to have had their autism recognised at an early age [3], there is still relatively little known about the lives of adults on the autism spectrum, whether diagnosed in childhood or later life. In 2014, Pellicano and colleagues [16] investigated whether existing research in autism reflected priorities and concerns of the community, undertaking interviews and focus groups with autistic adults, family members, practitioners and researchers alongside a survey of stakeholders. They reported that autism research was seen by autistic adults to represent ‘neurotypical priorities regarding us’, rather than addressing research questions that they would identify as important to making differences in their own day to day lives. Survey research conducted by Gotham et al [17] with autistic adults across the lifecourse (aged 18–71 years), identified some key priorities including improving public services and healthcare access. Participants have called for greater public acceptance of autism [18] and recognition that a more person-centred approach is necessary in order to understand for example how individuals might define success in terms of personal achievements as well as other life experiences such as accessing healthcare and community services [19]
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