ArticleAutism : the international journal of research and practice2019
The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants.
Article in Autism : the international journal of research and practice, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 189 papers, 6 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
189 citing papers in PubMed, 6 syntheses or guidelines pooled it.
- Meta-analysis of Psychotherapy for Autistic Youth.Child psychiatry and human development · 2026Pooled it
- Complementary, alternative and integrative medicine for autism: an umbrella review and online platform.Nature human behaviour · 2025Pooled it
- How are Autistic People Involved in the Design of Extended Reality Technologies? A Systematic Literature Review.Journal of autism and developmental disorders · 2024Pooled it
- Dietary recommendations to customize canteen menus according to the nutritional and sensory needs of individuals with autism spectrum disorder.Eating and weight disorders : EWD · 2023Guideline
- Autistic women's views and experiences of infant feeding: A systematic review of qualitative evidence.Autism : the international journal of research and practice · 2022Pooled it
- Cultures and cures: neurodiversity and brain organoids.BMC medical ethics · 2021Guideline
- Professional Development in Autism and Multilingualism for Behavior Analysts: A Randomized Waitlist Control Trial.Journal of autism and developmental disorders · 2026Trial
- Development of Autism-Inclusive Approaches for Everyday Life in a Participatory Process: From Challenges to Resolutions.Journal of autism and developmental disorders · 2026Article
- Addressing Common Problems in Autism Research: Cohort Development and Sample Description for a Participatory, Real-World, Longitudinal Study of Outcomes in Autistic Adults.Autism : the international journal of research and practice · 2026Article
- Building recurring public and patient involvement in adult autism psychiatry and neurodevelopmental research: lessons from the first year of a patient panel and advisory board.Research involvement and engagement · 2026Article
- Evaluating Partnership Quality and Outcomes Within an Autism Community Collaborative.Journal of autism and developmental disorders · 2026Article
- Pilot Test of the Forming Love around Autistic people to Prevent Suicide Program.Autism in adulthood · 2026Article
- "Making it so more people do research": leveraging engagement to develop the Equipped to Engage Toolkit for research partners with intellectual disability.Research involvement and engagement · 2026Article
- Looking Through a Cultural Perspective: Autistic Young Adults' Experiences and Expectations in Sexuality and Relationship Education in the U.S.Journal of autism and developmental disorders · 2026Article
- "They Really Save Us From Ourselves" : Autism Researchers' Insights on Community Engagement and Ethics.Journal of bioethical inquiry · 2026Article
- Experiences and Needs of Leaders Supporting Multilingual ABA Staff: A Qualitative Exploration.Journal of autism and developmental disorders · 2026Article
- Article
- Valid when valued: A community-engaged framework and toolkit to improve identification of autistic people's motor difficulties in research and practice.Autism in adulthood · 2026Article
- "Shutdowns Are Like You're Stuck on the Blue Screen of Death": A Metaphor Analysis of Autistic Shutdowns.Autism in adulthood · 2026Article
- Autism Terminology Preferences Among Autistic and Non-Autistic Adults in North America.Autism in adulthood · 2026Article
129 more citing papers are in PubMed but not listed here.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
10 authors.
Funding
Abstract
As interest in autism in adulthood grows, so does the need for methods to promote the inclusion of autistic adults in research. Our objective was to create practice-based guidelines for the inclusion of autistic adults, both as research team members and as study participants. We conducted an institutional ethnography of three closely related research partnerships that used participatory methods with autistic adults over the years 2006-2018. We used an iterative approach which combined discussions with community and academic partners and artifact review. Guidelines to promote the inclusion of autistic adults as co-researchers focus on being transparent about partnership goals, clearly defining roles and choosing partners, creating processes for effective communication and power-sharing, building and maintaining trust, disseminating findings, encouraging community capacitation, and fairly compensating partners. Guidelines to promote the inclusion of autistic adults as study participants focus on maximizing autonomy and inclusion, creating an accessible consent process, offering multiple modes of participation, adapting survey instruments for use with autistic adults, creating accessible qualitative interview guides, and handling data from proxy reporters. Although these practice-based guidelines may not apply to all research teams, we hope that other researchers can capitalize on these practical lessons when including autistic adults in research.
Indexed as
Identifiers
What OpenQuestion holds
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.