ArticleJournal of autism and developmental disorders2017
A Mixed Methods Study of Barriers to Formal Diagnosis of Autism Spectrum Disorder in Adults.
Article in Journal of autism and developmental disorders, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 78 papers, 2 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
78 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Experiences of females on the autism spectrum through the perspective of minority stress theory: a review.Frontiers in psychiatry · 2025Pooled it
- Building Bricks of Integrated Care Pathway for Autism Spectrum Disorder: A Systematic Review.International journal of molecular sciences · 2023Pooled it
- "Who I am": understanding the self-identity process of autism in adults in the UK.International journal of qualitative studies on health and well-being · 2026Article
- 'Being Autistic is Kind of Who You Are, It's an Identity Rather than a Disorder': Identity Negotiation and Construction Among Autistic Adults Diagnosed in Later Life.Journal of autism and developmental disorders · 2026Article
- Feasibility and Acceptability of an AI-Driven Conversational Platform for Structured Autism History Taking and Referral Support: Mixed Methods Proof-of-Concept Study.JMIR formative research · 2026Article
- "Tell Me What My Job Is": A Qualitative Exploration of the Experiences of Autistic Academic Staff Working in Higher Education in Ireland.Autism : the international journal of research and practice · 2026Article
- "Autism Diagnosis as a Guide": Taiwanese Adolescents' Own Experiences of Receiving Autism Diagnoses.Autism : the international journal of research and practice · 2026Article
- Brief Report: Self-Reported Medication Use in Individuals Diagnosed with Autism Spectrum Disorder in Adulthood: A U.S. Clinic Sample from 2012 to 2022.Journal of autism and developmental disorders · 2026Article
- Family Adaptation in Families with Autistic Members: A Scoping Review and Thematic Synthesis of Relational Systems, Context, and Development.Child psychiatry and human development · 2026Review
- The Role of Self-Concept Clarity in the Relations Between Disordered Eating, Gender Diversity, and Autistic and ADHD Traits.Archives of sexual behavior · 2026Article
- The Architectural Needs and Preferences of Autistic People Versus Gerontological Residential Care Facility Design Practices.Autism in adulthood · 2026Article
- Community views on the assessment and diagnosis of autism: Principles to guide clinical practice.Autism : the international journal of research and practice · 2026Article
- Exploring auditory perception experiences in daily situations in autistic adults.Autism : the international journal of research and practice · 2026Article
- User experiences of the mobile stress autism mate (SAM) application: a qualitative study among autistic adults not receiving mental health care.Health psychology and behavioral medicine · 2026Article
- The healthcare experiences of middle and older age autistic women in the United Kingdom.Autism : the international journal of research and practice · 2026Article
- Lived Experience, Family, and Clinician Perspectives on Barriers to Adult Autism Diagnosis and Post-Diagnostic Supports: A Mixed-Methods Systematic Review.Journal of developmental and physical disabilities · 2026Article
- Article
- "No one was coming to save us": an interpretative phenomenological analysis exploring the experience of parents supporting their autistic daughter through anorexia nervosa.Journal of eating disorders · 2025Article
- Diagnostic Experiences and Barriers to Diagnosis Among Autistic Adults in the United States: Associations with Diagnostic Timing and Gender.Journal of autism and developmental disorders · 2025Article
- MilitaryAdvances in neurodevelopmental disorders · 2025Article
18 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
1 author.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Delayed diagnosis of autism spectrum disorder (ASD) into adulthood is common, and self-diagnosis is a growing phenomenon. This mixed methods study aimed to explore barriers to formal diagnosis of ASD in adults. In a qualitative strand, secondary analysis of data on the experiences of 114 individuals who were self-diagnosed or formally diagnosed with ASD in adulthood was used to identify barriers. In a quantitative strand, 665 individuals who were self-diagnosed or formally diagnosed in adulthood were surveyed online to examine incidence and severity of barriers. Fear of not being believed by professionals was identified as the most frequently occurring and most severe barrier. Professionals must strategize to build trust with individuals with ASD, particularly when examining the accuracy of self-diagnosis.
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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.