ArticlePublic health reports (Washington, D.C. : 1974)
The Prevalence and Characteristics of Children With Profound Autism, 15 Sites, United States, 2000-2016.
Article in Public health reports (Washington, D.C. : 1974). The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT07059364 (Empowering Caregivers to Promote Child Independence and Persistence With Activities), which is not on this map. Cited by 50 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.
Empowering Caregivers to Promote Child Independence and Persistence With Activities
Who cites it
50 citing papers in PubMed, 1 synthesis or guideline pooled it, 92 citations in OpenAlex.
- The Predominant Focus Is Still on Teaching Children to Make Requests: A Systematic Review of AAC for Autistic Adults and Children.International journal of language & communication disordersPooled it
- Accelerated intermittent theta burst stimulation targeting personalized fronto-parietal control network improves core symptoms of autism spectrum disorder: a double-blind, randomized controlled trial.Molecular psychiatry · 2026Trial
- Early Start Denver Model effectiveness in young autistic children: a large multicentric randomised controlled trial in two European countries.BMJ mental health · 2025Trial
- "They Really Save Us From Ourselves" : Autism Researchers' Insights on Community Engagement and Ethics.Journal of bioethical inquiry · 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
- Genomic, Transcriptomic, and Regulomic Analyses Do Not Support Profound Autism as a Distinct Biological Category.bioRxiv : the preprint server for biology · 2026Article
- The Immune System and the Plural Autisms: A Narrative Review.Journal of personalized medicine · 2026Review
- Alterations in Early Alpha-band Connectivity emerge in Infancy among children later diagnosed with Autism.medRxiv : the preprint server for health sciences · 2026Article
- Developing a consensus research definition for profound autism using a modified Delphi method.Molecular autism · 2026Article
- Pediatric dental surgeries in children with intellectual disabilities and autism paid by means of Medicaid.Journal of the American Dental Association (1939) · 2026Article
- Mortality Among Youth and Young Adults With Autism Spectrum Disorder, Intellectual Disability, or Cerebral Palsy.JAMA pediatrics · 2026Article
- Towards treatments targeting the gut to improve behavioural outcomes in autism spectrum disorder.Journal of neural transmission (Vienna, Austria : 1996) · 2026Review
- Trends Over Time in the Prevalence of Autism by Adaptive and Intellectual Functioning Levels.Autism research : official journal of the International Society for Autism Research · 2026Article
- Prevalence, incidence, and years lived with disability due to Autism Spectrum Disorder in Brazil, 1990-2023: Results from the Global Burden of Disease Study 2023.Revista brasileira de epidemiologia = Brazilian journal of epidemiology · 2026Article
- A framework to improve parental participation in the hospital care of autistic children in the eThekwini district of KwaZulu-Natal.African journal of disability · 2026Article
- Accelerating autism prevalence in California with changepoint in the mid-2010s and divergence by county and socioeconomic indicators.SAGE open medicine · 2026Article
- Clinical Features of Children at Risk of Profound Autism.Journal of autism and developmental disorders · 2025Article
- "There is No Help:" Caregiver Perspectives on Service Needs for Adolescents and Adults with Profound Autism.Journal of autism and developmental disorders · 2025Article
- Approaches for Predicting the Occurrence of Challenging Behaviors in Individuals with Autism Spectrum Disorder: A Narrative Review.Journal of personalized medicine · 2025Review
- A protocol for measuring sleep at home in children with autism using EEG headbands.Research square · 2025Article
Corrections and comments
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Authors and funding
10 authors at 4 institutions in 1 country.
Funding
Abstract
objectivesAutism spectrum disorder (autism) is a heterogeneous condition that poses challenges in describing the needs of individuals with autism and making prognoses about future outcomes. We applied a newly proposed definition of profound autism to surveillance data to estimate the percentage of children with autism who have profound autism and describe their sociodemographic and clinical characteristics.
methodsWe analyzed population-based surveillance data from the Autism and Developmental Disabilities Monitoring Network for 20 135 children aged 8 years with autism during 2000-2016. Children were classified as having profound autism if they were nonverbal, were minimally verbal, or had an intelligence quotient <50.
resultsThe percentage of 8-year-old children with profound autism among those with autism was 26.7%. Compared with children with non-profound autism, children with profound autism were more likely to be female, from racial and ethnic minority groups, of low socioeconomic status, born preterm or with low birth weight; have self-injurious behaviors; have seizure disorders; and have lower adaptive scores. In 2016, the prevalence of profound autism was 4.6 per 1000 8-year-olds. The prevalence ratio (PR) of profound autism was higher among non-Hispanic Asian/Native Hawaiian/Other Pacific Islander (PR = 1.55; 95 CI, 1.38-1.73), non-Hispanic Black (PR = 1.76; 95% CI, 1.67-1.86), and Hispanic (PR = 1.50; 95% CI, 0.88-1.26) children than among non-Hispanic White children.
conclusionsAs the population of children with autism continues to change, describing and quantifying the population with profound autism is important for planning. Policies and programs could consider the needs of people with profound autism across the life span to ensure their needs are met.
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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.