ArticleAutism in adulthood2022
"I Knew She'd Get It, and Get Me": Participants' Perspectives of a Participatory Autism Research Project.
Article in Autism in adulthood, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 23 papers, 1 of them a synthesis that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
23 citing papers in PubMed, 1 synthesis or guideline pooled it, 74 citations in OpenAlex.
- Systematic Review: The Psychosocial Impacts of Autism-Related Genetic Testing.Journal of the American Academy of Child and Adolescent Psychiatry · 2026Pooled it
- Reacting, Retreating, Regulating, and Reconnecting: How Autistic Adults in the United Kingdom Use Time Alone for Well-Being.Autism in adulthood · 2026Article
- Aligning Biomedical Research With Neurodiversity to Support the Metabolic Health of Autistic Individuals.Obesity science & practice · 2026Article
- A community-based participatory research approach to evaluating perceptions of bilingualism among Latino parents of autistic children.First language · 2026Article
- Youth on the autism spectrum hospitalized for suicide related thoughts and behaviors: Characteristics and perspectives from the field.Journal of affective disorders · 2026Article
- Using Photovoice Methods to Set Research Priorities With Autistic People With Experience of an Eating Disorder.Journal of clinical psychology · 2025Article
- 'I did what I could to earn some money and be of use': A qualitative exploration of autistic people's journeys to career success and fulfilment.Autism : the international journal of research and practice · 2025Article
- "What does 'often' even mean?" Revising and validating the Comprehensive Autistic Trait Inventory in partnership with autistic people.Molecular autism · 2025Article
- Methodological insights from the inside: developing autistic-friendly interviewing in a group interview space.Frontiers in psychiatry · 2025Article
- Article
- What are the autism research priorities of autistic adults in Scotland?Autism : the international journal of research and practice · 2024Article
- Supporting Autistic College Students: Examining the Mentoring, Organization and Social Support for Autism Inclusion on Campus (MOSSAIC) Program.Journal of autism and developmental disorders · 2024Article
- Autistic adults' experiences of financial wellbeing: Part II.Autism : the international journal of research and practice · 2024Article
- "Maybe No One Knows We Need Help": Understanding the Experiences of Autistic Working Mothers in Australia.Autism in adulthood · 2024Article
- Supporting autistic communities through parent-led and child/young person-led digital social story interventions: an exploratory study.Frontiers in digital health · 2024Article
- The Foundations of Autistic Flourishing.Current psychiatry reports · 2023Review
- "I'm the Family Ringmaster and Juggler": Autistic Parents' Experiences of Parenting During the COVID-19 Pandemic.Autism in adulthood · 2023Article
- Combating stigma in autism research through centering autistic voices: a co-interview guide for qualitative research.Frontiers in psychiatry · 2023Article
- Autistic Perspectives on the Future of Clinical Autism Research.Autism in adulthood · 2022Article
- "Autism research is in crisis": A mixed method study of researcher's constructions of autistic people and autism research.Frontiers in psychology · 2022Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
8 authors at 3 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Introduction: Autistic advocates and their supporters have long argued that conventional research practices provide too few opportunities for genuine engagement with autistic people, contributing to social disenfranchisement among autistic people. We recently described one attempt to develop and implement a participatory study in which a team of autistic and nonautistic researchers worked together to gather life histories from late-diagnosed autistic people. In the current study, we sought to understand the impact of this participatory approach on the participants themselves. Methods: We spoke to 25 Australian late-diagnosed autistic adults (aged 45-72 years), who had been interviewed by an autistic researcher using an oral history approach. We asked them about their experience of being involved in that project and the research process more broadly. We thematically analyzed participants' interviews. Results: Participants responded overwhelmingly positively to the opportunity to tell their life history, considering it illuminating and empowering. While recounting their life history was often described as "exhausting" and "draining," participants also reported feeling "supported all the way" and agreed "it was made easier because I had an autistic researcher interviewing me." One participant went so far as to say that they "probably would have dropped out [of the project] if it was run by people who weren't autistic." Conclusions: These findings demonstrate that the benefits of coproduction to researchers and community partners extend to study participants and to the quality of the research itself. Involving autistic partners in the research process, especially in its implementation, can play a crucial role in enhancing autism research.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.