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Determinants of an autism spectrum disorder diagnosis in childhood and adolescence: Evidence from the UK Millennium Cohort Study

This study aimed to identify determinants of a late autism spectrum disorder diagnosis, including diagnoses made ‘very late’ (i.e., in adolescence), using the Millennium Cohort Study, a nationally representative population-based cohort in the United Kingdom. Children diagnosed with autism spectrum d...

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Autores principales: Hosozawa, Mariko, Sacker, Amanda, Mandy, William, Midouhas, Emily, Flouri, Eirini, Cable, Noriko
Formato: Online Artículo Texto
Lenguaje:English
Publicado: SAGE Publications 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7645602/
https://www.ncbi.nlm.nih.gov/pubmed/32367727
http://dx.doi.org/10.1177/1362361320913671
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author Hosozawa, Mariko
Sacker, Amanda
Mandy, William
Midouhas, Emily
Flouri, Eirini
Cable, Noriko
author_facet Hosozawa, Mariko
Sacker, Amanda
Mandy, William
Midouhas, Emily
Flouri, Eirini
Cable, Noriko
author_sort Hosozawa, Mariko
collection PubMed
description This study aimed to identify determinants of a late autism spectrum disorder diagnosis, including diagnoses made ‘very late’ (i.e., in adolescence), using the Millennium Cohort Study, a nationally representative population-based cohort in the United Kingdom. Children diagnosed with autism spectrum disorder by age 14 (N = 581) were included and grouped by the parent-reported timing of diagnosis: before school (up to age 5), during primary school (age 5–11) and during secondary school (age 11–14). Predictors of diagnostic timing, at the child, family and school levels, were investigated using multinomial logistic regression. Most (79%) children with autism spectrum disorder were diagnosed after school entry, and 28% were not diagnosed until secondary school. Among those not diagnosed until secondary school, 75% had been identified at age 5 years by a parent and/or teacher as having socio-behavioural difficulties. Being diagnosed after starting school was predicted by living in poverty (adjusted relative risk ratio: primary = 1.90, 95% confidence interval: 1.03–3.53; secondary = 2.15, 1.05–4.42) and/or having no initial parental concerns (primary = 0.32, 0.15–0.70; secondary = 0.19, 0.09–0.43). Having typical-range intelligence also predicted diagnosis during secondary school. The result indicates that those without cognitive delays and poorer children were at risk of ‘very late’ (i.e. adolescent) diagnosis. Strategies to promote earlier identification, targeting age at primary school entry, could help those more likely to be diagnosed late. Lay abstract Despite policy emphasis on early identification, many children with autism spectrum disorder are diagnosed late, with some being diagnosed as late as in adolescence. However, evidence on what determines the timing of autism spectrum disorder diagnosis including children diagnosed in adolescence is lacking. Understanding these determinants, particularly in those diagnosed later than is ideal, can inform the development of effective strategies to improve earlier identification of autism spectrum disorder. This study used a nationally representative population-based cohort in the United Kingdom to explore child, family and school level predictors of timing of autism spectrum disorder diagnosis. In the United Kingdom, 79% of the children with autism spectrum disorder were diagnosed after entering primary school and 28% during secondary school. Among those not diagnosed until secondary school, 75% had shown social difficulties noticed by parents and/or teachers at age 5 years. The results suggest that healthcare providers should be aware that, even for universal systems of care, those living in poverty and having higher intelligence are most likely to miss out on a timely diagnosis. Strategies to promote earlier identification among school-aged children, including targeting primary school entry age (i.e. around age 5) and that encouraging referrals for a formal assessment at the first report of concerns over the child’s social development may benefit those children who would otherwise be diagnosed later.
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spelling pubmed-76456022020-11-17 Determinants of an autism spectrum disorder diagnosis in childhood and adolescence: Evidence from the UK Millennium Cohort Study Hosozawa, Mariko Sacker, Amanda Mandy, William Midouhas, Emily Flouri, Eirini Cable, Noriko Autism Original Articles This study aimed to identify determinants of a late autism spectrum disorder diagnosis, including diagnoses made ‘very late’ (i.e., in adolescence), using the Millennium Cohort Study, a nationally representative population-based cohort in the United Kingdom. Children diagnosed with autism spectrum disorder by age 14 (N = 581) were included and grouped by the parent-reported timing of diagnosis: before school (up to age 5), during primary school (age 5–11) and during secondary school (age 11–14). Predictors of diagnostic timing, at the child, family and school levels, were investigated using multinomial logistic regression. Most (79%) children with autism spectrum disorder were diagnosed after school entry, and 28% were not diagnosed until secondary school. Among those not diagnosed until secondary school, 75% had been identified at age 5 years by a parent and/or teacher as having socio-behavioural difficulties. Being diagnosed after starting school was predicted by living in poverty (adjusted relative risk ratio: primary = 1.90, 95% confidence interval: 1.03–3.53; secondary = 2.15, 1.05–4.42) and/or having no initial parental concerns (primary = 0.32, 0.15–0.70; secondary = 0.19, 0.09–0.43). Having typical-range intelligence also predicted diagnosis during secondary school. The result indicates that those without cognitive delays and poorer children were at risk of ‘very late’ (i.e. adolescent) diagnosis. Strategies to promote earlier identification, targeting age at primary school entry, could help those more likely to be diagnosed late. Lay abstract Despite policy emphasis on early identification, many children with autism spectrum disorder are diagnosed late, with some being diagnosed as late as in adolescence. However, evidence on what determines the timing of autism spectrum disorder diagnosis including children diagnosed in adolescence is lacking. Understanding these determinants, particularly in those diagnosed later than is ideal, can inform the development of effective strategies to improve earlier identification of autism spectrum disorder. This study used a nationally representative population-based cohort in the United Kingdom to explore child, family and school level predictors of timing of autism spectrum disorder diagnosis. In the United Kingdom, 79% of the children with autism spectrum disorder were diagnosed after entering primary school and 28% during secondary school. Among those not diagnosed until secondary school, 75% had shown social difficulties noticed by parents and/or teachers at age 5 years. The results suggest that healthcare providers should be aware that, even for universal systems of care, those living in poverty and having higher intelligence are most likely to miss out on a timely diagnosis. Strategies to promote earlier identification among school-aged children, including targeting primary school entry age (i.e. around age 5) and that encouraging referrals for a formal assessment at the first report of concerns over the child’s social development may benefit those children who would otherwise be diagnosed later. SAGE Publications 2020-05-05 2020-08 /pmc/articles/PMC7645602/ /pubmed/32367727 http://dx.doi.org/10.1177/1362361320913671 Text en © The Author(s) 2020 https://creativecommons.org/licenses/by/4.0/ This article is distributed under the terms of the Creative Commons Attribution 4.0 License (https://creativecommons.org/licenses/by/4.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (https://us.sagepub.com/en-us/nam/open-access-at-sage).
spellingShingle Original Articles
Hosozawa, Mariko
Sacker, Amanda
Mandy, William
Midouhas, Emily
Flouri, Eirini
Cable, Noriko
Determinants of an autism spectrum disorder diagnosis in childhood and adolescence: Evidence from the UK Millennium Cohort Study
title Determinants of an autism spectrum disorder diagnosis in childhood and adolescence: Evidence from the UK Millennium Cohort Study
title_full Determinants of an autism spectrum disorder diagnosis in childhood and adolescence: Evidence from the UK Millennium Cohort Study
title_fullStr Determinants of an autism spectrum disorder diagnosis in childhood and adolescence: Evidence from the UK Millennium Cohort Study
title_full_unstemmed Determinants of an autism spectrum disorder diagnosis in childhood and adolescence: Evidence from the UK Millennium Cohort Study
title_short Determinants of an autism spectrum disorder diagnosis in childhood and adolescence: Evidence from the UK Millennium Cohort Study
title_sort determinants of an autism spectrum disorder diagnosis in childhood and adolescence: evidence from the uk millennium cohort study
topic Original Articles
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7645602/
https://www.ncbi.nlm.nih.gov/pubmed/32367727
http://dx.doi.org/10.1177/1362361320913671
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