ArticleAutism in adulthood2022
Measuring the Wrong Thing the Right Way? Time to Rethink Autism Research Tools.
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 17 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
17 citing papers in PubMed, 1 synthesis or guideline pooled it, 39 citations in OpenAlex.
- Representation of autism in fictional media: A systematic review of media content and its impact on viewer knowledge and understanding of autism.Autism : the international journal of research and practice · 2023Pooled it
- Unheard Voices: A Systematic Literature Review of Studies Using Self-Report Methods to Gather the Perspectives of Autistic Adults with Intellectual Disability.Autism in adulthood · 2026Article
- From Participants to Community Partners: A Novel Community-Based Participatory Research (CBPR) Approach to Autistic-Led Inquiry in Digital and Virtual Environments.Healthcare (Basel, Switzerland) · 2026Article
- The relationship between newspaper reading preferences and attitudes towards autism.Autism : the international journal of research and practice · 2026Article
- Exploring the Feasibility of Social Skills Programs for Autistic Youth Through Virtual Reality.Journal of autism and developmental disorders · 2026Article
- The Impact of Intersectional Disadvantage on Autistic Women's Experiences of Interpersonal Violence: A Narrative Review.Autism in adulthood · 2025Article
- Factors underlying differences in knowledge, explicit stigma and implicit biases towards autism across Hong Kong, the United Kingdom and the United States.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
- Evaluating measures to assess loneliness in autistic adults.Autism : the international journal of research and practice · 2024Article
- Childhood neurodivergent traits, inflammation and chronic disabling fatigue in adolescence: a longitudinal case-control study.BMJ open · 2024Article
- Autistic adults' views on the design and processes within randomised controlled trials: The APRiCoT study.Autism : the international journal of research and practice · 2024Article
- Autistic adults' experiences of managing wellbeing and implications for social prescribing.Disability & society · 2024Article
- Lockdown Experiences and Views on Future Research Participation of Autistic Adults in the UK During the First 6 Months of the COVID-19 Pandemic.Autism in adulthood · 2023Article
- "Simultaneously Vague and Oddly Specific": Understanding Autistic People's Experiences of Decision Making and Research Questionnaires.Autism in adulthood · 2023Article
- The role of anxiety and depression in suicidal thoughts for autistic and non-autistic people: A theory-driven network analysis.Suicide & life-threatening behavior · 2023Article
- Combating stigma in autism research through centering autistic voices: a co-interview guide for qualitative research.Frontiers in psychiatry · 2023Article
- The Lived Experiences of Autistic Mothers: A Systematic Review and Thematic Synthesis of Qualitative Evidence.Autism & developmental language impairmentsReview
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
1 author at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Awareness and understanding of autism are increasing, sometimes in small incremental steps and sometimes through paradigm shifts. Much of this is driven by autistic advocates, whose voices are increasingly recognized as experts in their own lived experiences. The growing presence of autistic people in autism research-as participants, advisors, and (co)researchers-has brought about changes in the quality and relevance of autism research. We are seeing more studies by autistic autism researchers, more studies on issues of importance to autistic people, and more studies utilizing methodologies that resonate with autistic people. However, there remains a reliance on measures that are technically "valid" and "reliable" rather than relevant. As long as this is the case, we will continue to see studies published that "explain autism" in ways that do not reflect autistic experiences. Autism research is still making incremental changes and it is time for a paradigm shift.
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.