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Autism in the UK: Investigating Underdiagnosis in a Population-Based Cohort

27 Pages Posted: 1 Nov 2022

See all articles by Elizabeth O'Nions

Elizabeth O'Nions

University College London - Research Department of Clinical, Educational and Health Psychology

Irene Petersen

University College London - Primary Care & Population Health

Joshua Eusty Jonathan Buckman

University College London - Research Department of Clinical, Educational and Health Psychology

Rebecca Charlton

University of London - Department of Psychology

Claudia Cooper

Queen Mary University of London - Centre for Psychiatry and Mental Health

Anne Corbett

University of Exeter - College of Medicine and Health

Francesca Happé

King’s College London - Social, Genetic and Developmental Psychiatry Centre

Jill Manthorpe

King’s College London - NIHR Health & Social Care Workforce Research Unit

Marcus Richards

University College London - MRC Unit for Lifelong Health and Ageing

Rob Saunders

University College London - Centre for Outcomes Research and Effectiveness (CORE)

Cathy Zanker

Independent

William Mandy

University College London - Research Department of Clinical, Educational and Health Psychology

Joshua Stott

University College London - Department of Clinical, Educational and Health Psychology

More...

Abstract

Background: Autism has long been viewed as a paediatric condition, resulting in a ‘lost generation’ of autistic adults not diagnosed as children when autism was little known. We estimated numbers of diagnosed and undiagnosed UK autistic people, and examined how diagnostic rates differed by socio-demographic factors.

Methods: This population-based cohort study of prospectively collected primary care data from the IQVIA medical research database compared prevalence of diagnosed autism to community prevalence to estimate underdiagnosis. 1,840,036 individuals registered at a UK primary care practice in 2018 and 8,292,873 individuals registered between 2000 and 2018 were included.

Findings: As of 2018, 0.74% of people in the database were diagnosed autistic: 1.15% of males and 0.33% of females. Diagnostic rates were higher in children/young people vs. adults and older adults: 2.84% of 10-14-year-olds were diagnosed (1 in 35), vs. 0.02% aged 70+ (1 in 5,000). As of 2018, an estimated 526,700 people (0.79% of the UK population) were diagnosed autistic, and an estimated 509,700 to 1,436,300 were autistic but undiagnosed (59-73% of autistic people, 0.76%-2.14% of the population). Efforts to improve access to adult diagnostic assessments have not yet been effective: in 2018, c.1 in 200 5-9-year-olds were newly diagnosed vs. 1 in 3,400 20–49-year-olds, and 1 in 15,000 aged 50+.

Interpretation: Major age-related inequalities in access to autism diagnoses necessitate a step-change in access to diagnostic services.

Funding: Dunhill Medical Trust, Economic and Social Research Council, Medical Research Council, National Institute of Health Research, the Wellcome Trust, and the Royal College of Psychiatrists.

Declaration of Interest: P, RC, CC, AC, FH, JM, and RS declare no support from any organisation for the submitted work. EO received a post-doctoral fellowship from the Dunhill Medical Trust which funded completion of the work (grant awarded to JS and WM). JS was supported by the ESRC and NIHR. MR was supported by the Medical Research Council and JB was supported by the Wellcome Trust and the Royal College of Psychiatrists. CZ received honoraria for consultation on the AUDIT-50 project. All authors declare that they have no financial relationships with any organisations that might have an interest in the submitted work in the previous three years, and no other relationships or activities that could appear to have influenced the submitted work

Ethical Approval: IMRD holds ethical approval to collect and supply data for research purposes from the NHS London – South East Research Ethics Committee (reference 18/LO/0441). Use of the IMRD for this study was obtained and approved by IQVIA World Publications Scientific Review Committee in June 2021 (reference 21SRC014).

Keywords: autism spectrum condition, primary care, underdiagnosis, under-diagnosis, incidence, prevalence

Suggested Citation

O'Nions, Elizabeth and Petersen, Irene and Buckman, Joshua Eusty Jonathan and Charlton, Rebecca and Cooper, Claudia and Corbett, Anne and Happé, Francesca and Manthorpe, Jill and Richards, Marcus and Saunders, Rob and Zanker, Cathy and Mandy, William and Stott, Joshua, Autism in the UK: Investigating Underdiagnosis in a Population-Based Cohort. Available at SSRN: https://ssrn.com/abstract=4264844 or http://dx.doi.org/10.2139/ssrn.4264844

Elizabeth O'Nions

University College London - Research Department of Clinical, Educational and Health Psychology ( email )

Irene Petersen

University College London - Primary Care & Population Health ( email )

Joshua Eusty Jonathan Buckman

University College London - Research Department of Clinical, Educational and Health Psychology ( email )

Rebecca Charlton

University of London - Department of Psychology ( email )

Claudia Cooper

Queen Mary University of London - Centre for Psychiatry and Mental Health ( email )

Anne Corbett

University of Exeter - College of Medicine and Health ( email )

Francesca Happé

King’s College London - Social, Genetic and Developmental Psychiatry Centre ( email )

Jill Manthorpe

King’s College London - NIHR Health & Social Care Workforce Research Unit ( email )

Marcus Richards

University College London - MRC Unit for Lifelong Health and Ageing ( email )

Rob Saunders

University College London - Centre for Outcomes Research and Effectiveness (CORE) ( email )

Cathy Zanker

Independent ( email )

William Mandy

University College London - Research Department of Clinical, Educational and Health Psychology

17 Queen Square
London WC1N 3AR
United Kingdom

Joshua Stott (Contact Author)

University College London - Department of Clinical, Educational and Health Psychology ( email )

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