ArticleThe Lancet regional health. Europe2023
Autism in England: assessing underdiagnosis in a population-based cohort study of prospectively collected primary care data.
Article in The Lancet regional health. Europe, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 79 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
79 citing papers in PubMed, 2 syntheses or guidelines pooled it, 165 citations in OpenAlex.
- Exploring the landscape of adult autism research in psychology: a bibliometric and network analysis.Frontiers in psychology · 2024Pooled it
- Autism intervention meta-analysis of early childhood studies (Project AIM): updated systematic review and secondary analysis.BMJ (Clinical research ed.) · 2023Pooled it
- Anxiety, repetitive and restricted behaviors and interests, and social communication in autistic adults: an exploratory analysis of a phase 3, randomized clinical trial.Scientific reports · 2025Trial
- ND in Micro: neuroinclusion and neuroaffirmation for neurodivergent microbiologists.Nature reviews. Microbiology · 2026Article
- Sleep Problems and Mental Health in Middle-Aged and Older Autistic and Non-Autistic Adults.International journal of geriatric psychiatry · 2026Article
- Adapting compassionate mind training into guided self-help for parents of autistic children.Psychology and psychotherapy · 2026Article
- Prenatal exposure to maternal depression and antidepressants and neurodevelopmental outcomes: A population cohort study.PLoS medicine · 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
- Distinct Temporal Stages of Infant Brain Processing Associate With Early Versus Later Autism Diagnosis.Developmental science · 2026Article
- Amblyopia and adult health: a comprehensive analysis of long-term systemic, sensory and mental health comorbidities in a national cohort.The British journal of ophthalmology · 2026Article
- Maternal genetic liability to autism spectrum disorders and pregnancy outcomes.Archives of women's mental health · 2026Article
- Autism spectrum disorder: has it lost its meaning and is it leading to misdiagnosis?Psychological medicine · 2026Article
- Attention-Deficit/Hyperactivity Disorder in Children and Adults in England, 2000-2025: Recorded Prevalence and Diagnostic Trends in a Population-Based Observational Study Using Routinely Collected Primary Care Data.The Lancet regional health. Europe · 2026Article
- Article
- Age equality in UK healthcare policy and decision-making: a scoping review.BMC medical ethics · 2026Article
- 'The true me': Unravelling the dual narrative of borderline personality disorder and autistic spectrum disorder.The British journal of clinical psychology · 2026Article
- Ideological dilemmas of policing on the spectrum: Using critical discursive psychology to examine how neurodivergent police manage their identity framing.Discourse & society · 2026Article
- 'A New Pace of Life': A Mixed-Methods Exploration of Retirement Plans, Preparations and Experiences in Middle-Aged and Older Autistic and Non-Autistic Adults.Autism : the international journal of research and practice · 2026Article
- Long-Term Outcome Following Prenatal Diagnosis of Transposition of the Great Arteries.Pediatric cardiology · 2026Article
- Personality disorder diagnoses in UK Autistic people: Evidence from a matched cohort study.Autism : the international journal of research and practice · 2026Article
19 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
13 authors at 7 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Background: Autism has long been viewed as a paediatric condition, meaning that many autistic adults missed out on a diagnosis as children when autism was little known. We estimated numbers of diagnosed and undiagnosed autistic people in England, and examined how diagnostic rates differed by socio-demographic factors. Methods: This population-based cohort study of prospectively collected primary care data from IQVIA Medical Research Data (IMRD) compared the prevalence of diagnosed autism to community prevalence to estimate underdiagnosis. 602,433 individuals registered at an English primary care practice in 2018 and 5,586,100 individuals registered between 2000 and 2018 were included. Findings: Rates of diagnosed autism in children/young people were much higher than in adults/older adults. As of 2018, 2.94% of 10- to 14-year-olds had a diagnosis (1 in 34), vs. 0.02% aged 70+ (1 in 6000). Exploratory projections based on these data suggest that, as of 2018, 463,500 people (0.82% of the English population) may have been diagnosed autistic, and between 435,700 and 1,197,300 may be autistic and undiagnosed (59-72% of autistic people, 0.77%-2.12% of the English population). Age-related inequalities were also evident in new diagnoses (incidence): c.1 in 250 5- to 9-year-olds had a newly-recorded autism diagnosis in 2018, vs. c.1 in 4000 20- to 49-year-olds, and c.1 in 18,000 people aged 50+. Interpretation: Substantial age-related differences in the proportions of people diagnosed suggest an urgent need to improve access to adult autism diagnostic services. Funding: Dunhill Medical Trust, Economic and Social Research Council, Medical Research Council, National Institute for Health Research, the Wellcome Trust, and the Royal College of Psychiatrists.
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.