ArticlePloS one2014
Views on researcher-community engagement in autism research in the United Kingdom: a mixed-methods study.
Article in PloS one, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 47 papers, 1 of them a synthesis 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
47 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Rapid Review of the Brief Observation of Social Communication Change (BOSCC) Shows It Can Detect Behavioural Changes in Social Communication in Autism.Autism : the international journal of research and practice · 2026Pooled it
- "They Really Save Us From Ourselves" : Autism Researchers' Insights on Community Engagement and Ethics.Journal of bioethical inquiry · 2026Article
- Attendance Compulsory, Motivation Conditional. Autistic Youth's Psychological Need Support and Satisfaction Related to Physical Education: A Qualitative Investigation.Autism : the international journal of research and practice · 2026Article
- Who Shapes National Autism Guidance? A Cross-National Comparison of Autism Guideline Development, Representation, and Implementation.Journal of autism and developmental disorders · 2026Article
- Co-Designing a Digital Coach-Supported Parenting Program for Internalising Problems in Autistic Children.European journal of investigation in health, psychology and education · 2026Article
- Co-production with young people with developmental language disorder: Developing adapted materials for cognitive behavioral therapy.JCPP advances · 2026Article
- Co-creating a Canadian autism mental health literacy resource: a qualitative analysis of advisory perspectives.Health research policy and systems · 2025Article
- Time to Listen: Engaging Latino Autistic Adults and Parents as Partners in Advancing Autism Research.Journal of autism and developmental disorders · 2025Article
- Reporting community involvement in autism research: Findings from the journal Autism.Autism : the international journal of research and practice · 2025Article
- Autistic Co-Led Community Priorities for Future Autism Research in Aotearoa New Zealand.Autism in adulthood · 2024Article
- Diversity in Autistic Play: Autistic Adults' Experiences.Autism in adulthood · 2024Article
- Autistic Adults' Priorities for Future Autism Employment Research: Perspectives from the United Kingdom.Autism in adulthood · 2024Article
- The Brunswik Lens Model: a theoretical framework for advancing understanding of deceptive communication in autism.Frontiers in psychology · 2024Review
- Increased rates of chronic physical health conditions across all organ systems in autistic adolescents and adults.Molecular autism · 2023Article
- Early-Career Autism Researchers Are Shifting Their Research Directions: Tragedy or Opportunity?Autism in adulthood · 2023Article
- The Foundations of Autistic Flourishing.Current psychiatry reports · 2023Review
- "Take a walk in someone else's shoes": the role of participatory arts for health research development and training.Research involvement and engagement · 2023Article
- Autism-related language preferences of English-speaking individuals across the globe: A mixed methods investigation.Autism research : official journal of the International Society for Autism Research · 2023Article
- A realist review of health passports for Autistic adults.PloS one · 2023Review
- "Realizing the problem wasn't necessarily me": the meaning of childhood adversity and resilience in the lives of autistic adults.International journal of qualitative studies on health and well-being · 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
3 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
There has been a substantial increase in research activity on autism during the past decade. Research into effective ways of responding to the immediate needs of autistic people is, however, less advanced, as are efforts at translating basic science research into service provision. Involving community members in research is one potential way of reducing this gap. This study therefore investigated the views of community involvement in autism research both from the perspectives of autism researchers and of community members, including autistic adults, family members and practitioners. Results from a large-scale questionnaire study (n = 1,516) showed that researchers perceive themselves to be engaged with the autism community but that community members, most notably autistic people and their families, did not share this view. Focus groups/interviews with 72 participants further identified the potential benefits and remaining challenges to involvement in research, especially regarding the distinct perspectives of different stakeholders. Researchers were skeptical about the possibilities of dramatically increasing community engagement, while community members themselves spoke about the challenges to fully understanding and influencing the research process. We suggest that the lack of a shared approach to community engagement in UK autism research represents a key roadblock to translational endeavors.
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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.