ArticleFrontiers in psychiatry2024
Understanding profound autism: implications for stigma and supports.
Article in Frontiers in psychiatry, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. Cited by 13 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
13 citing papers in PubMed, 1 synthesis or guideline pooled it.
- A Systematic Review of the Stigma Experienced by People with Autism Spectrum Disorder Associated with Intellectual Disabilities and by Their Family Caregivers.Journal of autism and developmental disorders · 2025Pooled it
- English-Language Autism Terminology Preferences of Autistic People and their Parents in the United States: Clustering Illuminates Diverse Views.Autism : the international journal of research and practice · 2026Article
- What Factors Have Been the Most Helpful and Harmful and When? Identifying Key Impacts on Psychosocial Development According to Autistic Adults and Caregivers.Journal of autism and developmental disorders · 2026Article
- [Focusing on profound autism: validity of clinical taxonomy and management of treatment-resistant symptoms].Zhongguo dang dai er ke za zhi = Chinese journal of contemporary pediatrics · 2026Review
- Developing a consensus research definition for profound autism using a modified Delphi method.Molecular autism · 2026Article
- Towards treatments targeting the gut to improve behavioural outcomes in autism spectrum disorder.Journal of neural transmission (Vienna, Austria : 1996) · 2026Review
- Quality of life outcomes associated with stigma in autistic adults and their families: a systematic review.Frontiers in psychiatry · 2026Review
- Community education program on autism spectrum disorder: a case study of an ecosystem intervention involving family, school, NGO, and community stakeholders.Frontiers in public health · 2026Article
- Clinical Features of Children at Risk of Profound Autism.Journal of autism and developmental disorders · 2025Article
- Visual statistical learning and social attention in neurotypical, minimally speaking and speaking autistic preschoolers.Scientific reports · 2025Article
- Communication in Autistic Adults: An Action-Focused Review.Current psychiatry reports · 2025Review
- Acute Medical Events in Adults with Profound Autism: A Review and Illustrative Case Series.Brain sciences · 2025Article
- Characterization and Outcomes of Profoundly and Non-profoundly Autistic Individuals Admitted to a Specialized Psychiatric Inpatient Unit.Journal of autism and developmental disorders · 2024Article
Corrections and comments
- Erratum issued
Authors and funding
6 authors.
Funding
Abstract
Introduction: Societal perceptions and lack of understanding of autism spectrum disorder can be stigmatizing for autistic individuals and their families. This may be particularly the case for individuals who meet criteria for profound autism. Despite the considerable service needs of this marginalized group, there is little data on the prevalence of profound autism, nor on the experiences of those with profound autism and their families. Methods: The current study leveraged a mixed-methods approach to address these gaps. First, the prevalence of profound autism was examined in six samples-three from the United States and three from Western Europe. Second, inductive thematic analysis was used to code interviews from 20 caregivers of profoundly autistic adults. Results: The prevalence of profound autism varied widely across the six samples-from 11% to 48%. There were also notable differences between samples in prevalence by gender, race, and ethnicity. Two overarching themes were identified via inductive thematic analysis: Discussion: Future research should continue to examine the unique needs and stigmatization experiences of profoundly autistic individuals and their families across the life course.
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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.