Evidence map›Paper›PMID 37090088›Full record

ArticleThe Lancet regional health. Europe2023

Autism in England: assessing underdiagnosis in a population-based cohort study of prospectively collected primary care data.

Elizabeth O'Nions, Irene Petersen, Joshua E J Buckman, Rebecca Charlton, Claudia Cooper, Anne Corbett, Francesca Happé, Jill Manthorpe, Marcus Richards, Rob Saunders and 3 more

Open access · goldAbstract read
In one paragraph

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.

0numbers the graph read from it
0cells of the map it votes in
79citing papers in PubMed, 2 pooled it
29.4field-weighted citation impact, top 1% of its field
1 · What the graph read from 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.

2 · The registry

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.

3 · Its place in the literature

Who cites it

79 citing papers in PubMed, 2 syntheses or guidelines pooled it, 165 citations in OpenAlex.

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  20. Personality disorder diagnoses in UK Autistic people: Evidence from a matched cohort study.Autism : the international journal of research and practice · 2026
    Article

19 more citing papers are in PubMed but not listed here.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

13 authors at 7 institutions in 1 country.

Elizabeth O'NionsDivision of Psychology and Language Sciences, UCL Research Department of Clinical, Educational and Health Psychology, 1 - 19 Torrington Place, London WC1E 7HB, UK.
Irene PetersenUCL Research Department of Primary Care and Population Health, UCL Medical School (Royal Free Campus), Rowland Hill Street, London NW3 2PF, UK.
Joshua E J BuckmanDivision of Psychology and Language Sciences, UCL Research Department of Clinical, Educational and Health Psychology, 1 - 19 Torrington Place, London WC1E 7HB, UK.
Rebecca CharltonDepartment of Psychology, Goldsmiths University of London, New Cross, London SE14 6NW, UK.
Claudia CooperQueen Mary, University of London, Centre for Psychiatry and Mental Health, Wolfson Institute of Population Health, London E1 2AD, UK.
Anne CorbettCollege of Medicine and Health, University of Exeter, St Luke's Campus, Heavitree Road, Exeter EX1 2LU, UK.
Francesca HappéSocial, Genetic and Developmental Psychiatry Centre, Institute of Psychiatry, Psychology and Neuroscience, King's College London, Memory Lane, London SE5 8AF, UK.
Jill ManthorpeNIHR Health & Social Care Workforce Research Unit, King's College London, Strand, London WC2R 2LS, UK.
Marcus RichardsMRC Unit for Lifelong Health and Ageing at UCL, 1-19 Torrington Place, London WC1E 7HB, UK.
Rob SaundersDivision of Psychology and Language Sciences, UCL Research Department of Clinical, Educational and Health Psychology, 1 - 19 Torrington Place, London WC1E 7HB, UK.
Cathy ZankerIndependent, UK.
Will MandyDivision of Psychology and Language Sciences, UCL Research Department of Clinical, Educational and Health Psychology, 1 - 19 Torrington Place, London WC1E 7HB, UK.
Joshua StottDivision of Psychology and Language Sciences, UCL Research Department of Clinical, Educational and Health Psychology, 1 - 19 Torrington Place, London WC1E 7HB, UK.
Department of Health and Social Care · GBKing's College London · GBGoldsmiths University of London · GBMRC Unit for Lifelong Health and Ageing · GBQueen Mary University of London · GBThe Royal Free Hospital · GBUniversity of Exeter · GB

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

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

Autism spectrum conditionIncidencePrevalencePrimary careUnder-diagnosisUnderdiagnosis

Identifiers

PMID37090088
PMCPMC10114511
OpenAlexW4362579857

What OpenQuestion holds

Textmetadata
Read underepoch 390

Registered trials

None linked

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.