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Evidence of increasing recorded diagnosis of autism spectrum disorders in Wales, UK: An e-cohort study

Jack FG Underwood Orcid Logo, Marcos del Pozo Banos Orcid Logo, Aura Frizzati, Ann John Orcid Logo, Jeremy Hall

Autism, Volume: 26, Issue: 6, Pages: 1499 - 1508

Swansea University Authors: Marcos del Pozo Banos Orcid Logo, Ann John Orcid Logo

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Abstract

Estimates place the prevalence of autism spectrum disorders (autism) at around 1% in the population. New services for adult diagnosis have been set up in Wales, UK, at a time of rising awareness of the spectrum of autism experiences, however no studies have examined adult autism prevalence in Wales....

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Published in: Autism
ISSN: 1362-3613 1461-7005
Published: SAGE Publications 2022
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spelling 2022-08-16T13:02:17.0399370 v2 58356 2021-10-15 Evidence of increasing recorded diagnosis of autism spectrum disorders in Wales, UK: An e-cohort study f141785b1c0ab9efe45665d35c081b84 0000-0003-1502-389X Marcos del Pozo Banos Marcos del Pozo Banos true false ed8a9c37bd7b7235b762d941ef18ee55 0000-0002-5657-6995 Ann John Ann John true false 2021-10-15 HDAT Estimates place the prevalence of autism spectrum disorders (autism) at around 1% in the population. New services for adult diagnosis have been set up in Wales, UK, at a time of rising awareness of the spectrum of autism experiences, however no studies have examined adult autism prevalence in Wales. In this study we use an anonymised e-cohort comprised of healthcare record data to produce all-age estimates of prevalence and incidence of record-ed autism for the years 2001-2016. We found the overall prevalence rate of autism in healthcare records was 0.51%. The number of new-recorded cases of autism increased from 0.188 per 1000 person-years in 2001 to 0.644 per 1000 person-years in 2016. The estimate of 0.51% prevalence in the population is lower than suggested by population survey and cohort studies study methodologies, but comparable to other administrative record study estimates. Rates of new incident diagnoses of autism saw a >150% increase in the years 2008-2016, with a trend towards more diagnoses in those over 35 and an eight-fold increase in diagnoses in women from 2000-2016. Our study suggests that while the number of people being diagnosed with autism is increasing, many are still unrecognised by healthcare services. Journal Article Autism 26 6 1499 1508 SAGE Publications 1362-3613 1461-7005 autism spectrum disorders, health services, prevalence, screening 1 8 2022 2022-08-01 10.1177/13623613211059674 COLLEGE NANME Health Data Science COLLEGE CODE HDAT Swansea University This project was funded by a Wellcome Trust ISSF Clinical Primer award, and subsequent Wellcome Trust GW4-CAT Clinical Doctoral Fellowship (222849/Z/21/Z) to J.F.G.U. J.H., A.J., M.D.P.-B. and J.F.G.U. are supported by Healthcare Research Wales through the National Centre for Mental Health (NCMH) (CA04). J.H. and J.F.G.U. are supported by an MRC Pathfinder Grant (MC_PC_17212), and M.D.P.-B., A.F. and A.J. are supported by an MRC Pathfinder Grant (MC_PC_17211). 2022-08-16T13:02:17.0399370 2021-10-15T13:34:09.4312774 Faculty of Medicine, Health and Life Sciences Swansea University Medical School - Medicine Jack FG Underwood 0000-0003-1731-6039 1 Marcos del Pozo Banos 0000-0003-1502-389X 2 Aura Frizzati 3 Ann John 0000-0002-5657-6995 4 Jeremy Hall 5 58356__21892__29039179032f429b9763cbb2d2adc1d2.pdf 58356.pdf 2021-12-15T11:31:34.7630546 Output 335897 application/pdf Version of Record true © The Author(s) 2021. This article is distributed under the terms of the Creative Commons Attribution 4.0 License true eng https://creativecommons.org/licenses/by/4.0/
title Evidence of increasing recorded diagnosis of autism spectrum disorders in Wales, UK: An e-cohort study
spellingShingle Evidence of increasing recorded diagnosis of autism spectrum disorders in Wales, UK: An e-cohort study
Marcos del Pozo Banos
Ann John
title_short Evidence of increasing recorded diagnosis of autism spectrum disorders in Wales, UK: An e-cohort study
title_full Evidence of increasing recorded diagnosis of autism spectrum disorders in Wales, UK: An e-cohort study
title_fullStr Evidence of increasing recorded diagnosis of autism spectrum disorders in Wales, UK: An e-cohort study
title_full_unstemmed Evidence of increasing recorded diagnosis of autism spectrum disorders in Wales, UK: An e-cohort study
title_sort Evidence of increasing recorded diagnosis of autism spectrum disorders in Wales, UK: An e-cohort study
author_id_str_mv f141785b1c0ab9efe45665d35c081b84
ed8a9c37bd7b7235b762d941ef18ee55
author_id_fullname_str_mv f141785b1c0ab9efe45665d35c081b84_***_Marcos del Pozo Banos
ed8a9c37bd7b7235b762d941ef18ee55_***_Ann John
author Marcos del Pozo Banos
Ann John
author2 Jack FG Underwood
Marcos del Pozo Banos
Aura Frizzati
Ann John
Jeremy Hall
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1461-7005
doi_str_mv 10.1177/13623613211059674
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hierarchy_top_title Faculty of Medicine, Health and Life Sciences
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department_str Swansea University Medical School - Medicine{{{_:::_}}}Faculty of Medicine, Health and Life Sciences{{{_:::_}}}Swansea University Medical School - Medicine
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description Estimates place the prevalence of autism spectrum disorders (autism) at around 1% in the population. New services for adult diagnosis have been set up in Wales, UK, at a time of rising awareness of the spectrum of autism experiences, however no studies have examined adult autism prevalence in Wales. In this study we use an anonymised e-cohort comprised of healthcare record data to produce all-age estimates of prevalence and incidence of record-ed autism for the years 2001-2016. We found the overall prevalence rate of autism in healthcare records was 0.51%. The number of new-recorded cases of autism increased from 0.188 per 1000 person-years in 2001 to 0.644 per 1000 person-years in 2016. The estimate of 0.51% prevalence in the population is lower than suggested by population survey and cohort studies study methodologies, but comparable to other administrative record study estimates. Rates of new incident diagnoses of autism saw a >150% increase in the years 2008-2016, with a trend towards more diagnoses in those over 35 and an eight-fold increase in diagnoses in women from 2000-2016. Our study suggests that while the number of people being diagnosed with autism is increasing, many are still unrecognised by healthcare services.
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