ArticlePloS one2022
"We couldn't think in the box if we tried. We can't even find the damn box": A qualitative study of the lived experiences of autistic adults and relatives of autistic adults.
Article in PloS one, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 18 papers, 1 of them a synthesis that pooled it.
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Who cites it
18 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Informal Network Members' Perspectives and Experiences on Work for People with Intellectual Disabilities: A Thematic Synthesis.Journal of occupational rehabilitation · 2024Pooled it
- Self-Reported Strengths and Difficulties by Autistic Young Adults.Journal of autism and developmental disorders · 2026Article
- Lived Experience, Family, and Clinician Perspectives on Barriers to Adult Autism Diagnosis and Post-Diagnostic Supports: A Mixed-Methods Systematic Review.Journal of developmental and physical disabilities · 2026Article
- A Qualitative Study of the Diagnostic Experiences of Young Autistic Adults in China.Journal of autism and developmental disorders · 2025Article
- A Coproduced Exploration of Factors Influential to Quality of Life from the Perspective of Autistic Adults.Autism in adulthood · 2025Article
- Stigma and Misinformation About Autism Spectrum Disorder (ASD) on Tiktok and Instagram: Content Analysis Using #ASD, #Autism and #ASDinfo.Journal of autism and developmental disorders · 2025Article
- Acute Medical Events in Adults with Profound Autism: A Review and Illustrative Case Series.Brain sciences · 2025Article
- What Matters Most? An Exploration of Quality of Life Through the Everyday Experiences of Autistic Young People and Adults.Autism in adulthood · 2025Article
- Self-Set Goals: Autistic Adults Facilitating Their Self-Determination Through Digitally Mediated Social Stories.Autism in adulthood · 2025Article
- The Effect of Age Stereotype in Elderly Adults with the Mediation Role of Self-Esteem and Sense of Coherence.Psychology research and behavior management · 2025Review
- The Lived Experience of Autistic Adults in Employment: A Systematic Search and Synthesis.Autism in adulthood · 2024Review
- Being a Woman Is 100% Significant to My Experiences of Attention Deficit Hyperactivity Disorder and Autism: Exploring the Gendered Implications of an Adulthood Combined Autism and Attention Deficit Hyperactivity Disorder Diagnosis.Qualitative health research · 2024Article
- Article
- "Peas in a pod": Oral History Reflections on Autistic Identity in Family and Community by Late-Diagnosed Adults.Journal of autism and developmental disorders · 2023Article
- Reflections on my experiences as a non-autistic autism researcher.Autism : the international journal of research and practice · 2023Article
- Autistic discussion forums: insights into the topics that clinicians don't know about.Frontiers in psychiatry · 2023Article
- Toward understanding and enhancing self-determination: a qualitative exploration with autistic adults without co-occurring intellectual disability.Frontiers in psychiatry · 2023Article
- Examining subjective understandings of autistic burnout using Q methodology: A study protocol.PloS one · 2023Article
Corrections and comments
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Authors and funding
7 authors.
Funding
No grant is acknowledged in the PubMed record.
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.
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