ArticleAutism in adulthood2020
Creating Accessible Survey Instruments for Use with Autistic Adults and People with Intellectual Disability: Lessons Learned and Recommendations.
Article in Autism in adulthood, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 86 papers, 4 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
86 citing papers in PubMed, 4 syntheses or guidelines pooled it.
- Instruments in Spanish to Assess the Mental Health of Adults With Intellectual Disabilities. A Systematic Review.Journal of applied research in intellectual disabilities : JARID · 2025Pooled it
- AI in Medical Questionnaires: Scoping ReviewJournal of medical Internet research · 2025Pooled it
- A systematic review and meta-analysis of suicidality in autistic and possibly autistic people without co-occurring intellectual disability.Molecular autism · 2023Pooled it
- Loneliness in autistic adults: A systematic review.Autism : the international journal of research and practice · 2022Pooled it
- Acceptability and Implementation of a Primary Care Health Check for Autistic People: Findings From Evaluation Questionnaires and Interviews.Autism : the international journal of research and practice · 2026Trial
- Health economic evaluation of Autism Adapted Safety Plans: findings on feasibility of tools from a pilot randomised controlled trial.BMC health services research · 2025Trial
- 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
- A Comprehensive Toolkit to Support Self-Report Questionnaires for Autistic Adults With Cognitive Disability.Journal of applied research in intellectual disabilities : JARID · 2026Article
- A Qualitative Study Exploring the Acceptability of Taking Part in a Large Multicentre RCT of Medication for Anxiety in Autistic Adults (the STRATA Trial).Autism : the international journal of research and practice · 2026Article
- What Is Phenomenology For? Applications in Autism Mental Health and a Pragmatist Criterion of Success.Psychopathology · 2026Review
- Assessing Psychiatric Symptoms in Autistic Youth Using the K-CATJournal of autism and developmental disorders · 2026Article
- 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
- "I make my own decisions": Views on precision medicine research participation decisions from adults with intellectual disability.HGG advances · 2026Article
- Exploring Patterns of Self-Harm in Autistic Adults Using the Card Sort Task for Self-Harm.Autism : the international journal of research and practice · 2026Article
- Perspectives of Autistic People, Parents, and Healthcare Professionals on Communication in Healthcare Settings and Related Needs in Georgia: A Qualitative Study.Journal of autism and developmental disorders · 2026Article
- Operationalizing the ICF Core Sets for Autism and ADHD: A Multiple-Methods Feasibility Study.Journal of autism and developmental disorders · 2026Article
- A "Round, Bruising Sort of Pain": Autistic Girls' Social Camouflaging in Inclusive High School Settings.Journal of autism and developmental disorders · 2026Article
- Content Validity of the K-CATJournal of autism and developmental disorders · 2026Article
- The emotion dysregulation inventory - self-report: development and psychometric evaluation.Psychological medicine · 2026Article
- Overlapping And Differentiating Clinical Features of Autism and Borderline Personality Disorder in Women and People Assigned Female at Birth: A Cross-Sectional Study.Autism : the international journal of research and practice · 2026Article
26 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
12 authors.
Funding
Abstract
Despite growing appreciation of the need for research on autism in adulthood, few survey instruments have been validated for use with autistic adults. We conducted an institutional ethnography of two related partnerships that used participatory approaches to conduct research in collaboration with autistic people and people with intellectual disability. In this article, we focus on lessons learned from adapting survey instruments for use in six separate studies. Community partners identified several common problems that made original instruments inaccessible. Examples included: (1) the use of difficult vocabulary, confusing terms, or figures of speech; (2) complex sentence structure, confusing grammar, or incomplete phrases; (3) imprecise response options; (4) variation in item response based on different contexts; (5) anxiety related to not being able to answer with full accuracy; (6) lack of items to fully capture the autism-specific aspects of a construct; and (7) ableist language or concepts. Common adaptations included: (1) adding prefaces to increase precision or explain context; (2) modifying items to simplify sentence structure; (3) substituting difficult vocabulary words, confusing terms, or figures of speech with more straightforward terms; (4) adding hotlinks that define problematic terms or offer examples or clarifications; (5) adding graphics to increase clarity of response options; and (6) adding new items related to autism-specific aspects of the construct. We caution against using instruments developed for other populations unless instruments are carefully tested with autistic adults, and we describe one possible approach to ensure that instruments are accessible to a wide range of autistic participants. LAY SUMMARY:
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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.