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      Association of Race/Ethnicity and Social Disadvantage With Autism Prevalence in 7 Million School Children in England

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          Key Points

          Question

          What is the prevalence of autism spectrum disorder (ASD) in the total English state school population, and what are the social determinants associated with ASD status?

          Findings

          In this ASD prevalence cohort study of 7 047 238 pupils, national English prevalence was 1.76%, with marked differences according to racial/ethnic group. The highest prevalence was found in Black pupils (2.11%) and the lowest in Roma/Irish Travelers (0.85%), with important variability across geographic areas.

          Meaning

          These results show differences in ASD prevalence estimates across racial/ethnic minority groups in England, which could be attributable to diagnostic biases, possible differences in detection and referral, or differential phenotypic prevalence for racial/ethnic minority groups.

          Abstract

          This national cohort study evaluates whether socioeconomic disadvantage is associated with autism spectrum disorder prevalence and the likelihood of accessing autism services in racial/ethnic minority groups and disadvantaged groups among school pupils in England.

          Abstract

          Importance

          The global prevalence of autism spectrum disorder (ASD) has been reported to be between 1% and 2% of the population, with little research in Black, Asian, and other racial/ethnic minority groups. Accurate estimates of ASD prevalence are vital to planning diagnostic, educational, health, and social care services and may detect possible access barriers to diagnostic pathways and services and inequalities based on social determinants of health.

          Objective

          To evaluate whether socioeconomic disadvantage is associated with ASD prevalence and the likelihood of accessing ASD services in racial/ethnic minority and disadvantaged groups in England.

          Design, Setting, and Participants

          This case-control prevalence cohort study used the Spring School Census 2017 from the Pupil Level Annual Schools Census of the National Pupil Database, which is a total population sample that includes all English children, adolescents, and young adults aged 2 to 21 years in state-funded education. Data were collected on January 17, 2017, and analyzed from August 2, 2018, to January 28, 2020.

          Exposures

          Age and sex were treated as a priori confounders while assessing correlates of ASD status according to (1) race/ethnicity, (2) social disadvantage, (3) first language spoken, (4) Education, Health and Care Plan or ASD Special Educational Needs and Disability support status, and (5) mediation analysis to assess how social disadvantage and language might affect ASD status.

          Main Outcomes and Measures

          Sex- and age-standardized ASD prevalence by race/ethnicity and 326 English local authority districts in pupils aged 5 to 19 years.

          Results

          The final population sample consisted of 7 047 238 pupils (50.99% male; mean [SD] age, 10.18 [3.47] years) and included 119 821 pupils with ASD, of whom 21 660 also had learning difficulties (18.08%). The standardized prevalence of ASD was 1.76% (95% CI, 1.75%-1.77%), with male pupils showing a prevalence of 2.81% (95% CI, 2.79%-2.83%) and female pupils a prevalence of 0.65% (95% CI, 0.64%-0.66%), for a male-to-female ratio (MFR) of 4.32:1. Standardized prevalence was highest in Black pupils (2.11% [95% CI, 2.06%-2.16%]; MFR, 4.68:1) and lowest in Roma/Irish Travelers (0.85% [95% CI, 0.67%-1.03%]; MFR, 2.84:1). Pupils with ASD were more likely to face social disadvantage (adjusted prevalence ratio, 1.61; 95% CI, 1.59-1.63) and to speak English as an additional language (adjusted prevalence ratio, 0.64; 95% CI, 0.63-0.65). The effect of race/ethnicity on ASD status was mediated mostly through social disadvantage, with Black pupils having the largest effect (standardized mediation coefficient, 0.018; P < .001) and 12.41% of indirect effects through this way.

          Conclusions and Relevance

          These findings suggest that significant differences in ASD prevalence exist across racial/ethnic groups and geographic areas and local authority districts, indicating possible differential phenotypic prevalence or differences in detection or referral for racial/ethnic minority groups.

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          Most cited references38

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          The moderator-mediator variable distinction in social psychological research: conceptual, strategic, and statistical considerations.

          In this article, we attempt to distinguish between the properties of moderator and mediator variables at a number of levels. First, we seek to make theorists and researchers aware of the importance of not using the terms moderator and mediator interchangeably by carefully elaborating, both conceptually and strategically, the many ways in which moderators and mediators differ. We then go beyond this largely pedagogical function and delineate the conceptual and strategic implications of making use of such distinctions with regard to a wide range of phenomena, including control and stress, attitudes, and personality traits. We also provide a specific compendium of analytic procedures appropriate for making the most effective use of the moderator and mediator distinction, both separately and in terms of a broader causal system that includes both moderators and mediators.
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            Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2016

            Problem/Condition Autism spectrum disorder (ASD). Period Covered 2016. Description of System The Autism and Developmental Disabilities Monitoring (ADDM) Network is an active surveillance program that provides estimates of the prevalence of ASD among children aged 8 years whose parents or guardians live in 11 ADDM Network sites in the United States (Arizona, Arkansas, Colorado, Georgia, Maryland, Minnesota, Missouri, New Jersey, North Carolina, Tennessee, and Wisconsin). Surveillance is conducted in two phases. The first phase involves review and abstraction of comprehensive evaluations that were completed by medical and educational service providers in the community. In the second phase, experienced clinicians who systematically review all abstracted information determine ASD case status. The case definition is based on ASD criteria described in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition. Results For 2016, across all 11 sites, ASD prevalence was 18.5 per 1,000 (one in 54) children aged 8 years, and ASD was 4.3 times as prevalent among boys as among girls. ASD prevalence varied by site, ranging from 13.1 (Colorado) to 31.4 (New Jersey). Prevalence estimates were approximately identical for non-Hispanic white (white), non-Hispanic black (black), and Asian/Pacific Islander children (18.5, 18.3, and 17.9, respectively) but lower for Hispanic children (15.4). Among children with ASD for whom data on intellectual or cognitive functioning were available, 33% were classified as having intellectual disability (intelligence quotient [IQ] ≤70); this percentage was higher among girls than boys (40% versus 32%) and among black and Hispanic than white children (47%, 36%, and 27%, respectively). Black children with ASD were less likely to have a first evaluation by age 36 months than were white children with ASD (40% versus 45%). The overall median age at earliest known ASD diagnosis (51 months) was similar by sex and racial and ethnic groups; however, black children with IQ ≤70 had a later median age at ASD diagnosis than white children with IQ ≤70 (48 months versus 42 months). Interpretation The prevalence of ASD varied considerably across sites and was higher than previous estimates since 2014. Although no overall difference in ASD prevalence between black and white children aged 8 years was observed, the disparities for black children persisted in early evaluation and diagnosis of ASD. Hispanic children also continue to be identified as having ASD less frequently than white or black children. Public Health Action These findings highlight the variability in the evaluation and detection of ASD across communities and between sociodemographic groups. Continued efforts are needed for early and equitable identification of ASD and timely enrollment in services.
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              Autism.

              Autism is a set of heterogeneous neurodevelopmental conditions, characterised by early-onset difficulties in social communication and unusually restricted, repetitive behaviour and interests. The worldwide population prevalence is about 1%. Autism affects more male than female individuals, and comorbidity is common (>70% have concurrent conditions). Individuals with autism have atypical cognitive profiles, such as impaired social cognition and social perception, executive dysfunction, and atypical perceptual and information processing. These profiles are underpinned by atypical neural development at the systems level. Genetics has a key role in the aetiology of autism, in conjunction with developmentally early environmental factors. Large-effect rare mutations and small-effect common variants contribute to risk. Assessment needs to be multidisciplinary and developmental, and early detection is essential for early intervention. Early comprehensive and targeted behavioural interventions can improve social communication and reduce anxiety and aggression. Drugs can reduce comorbid symptoms, but do not directly improve social communication. Creation of a supportive environment that accepts and respects that the individual is different is crucial. Copyright © 2014 Elsevier Ltd. All rights reserved.
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                Author and article information

                Journal
                JAMA Pediatr
                JAMA Pediatr
                JAMA Pediatr
                JAMA Pediatrics
                American Medical Association
                2168-6203
                2168-6211
                29 March 2021
                June 2021
                29 March 2021
                : 175
                : 6
                : e210054
                Affiliations
                [1 ]Autism Research Centre, Department of Psychiatry, University of Cambridge, Cambridge, United Kingdom
                [2 ]Department of International Health, School CAPHRI (School for Public Health and Primary Care), Faculty of Health, Medicine and Life Sciences, Maastricht University, Maastricht, the Netherlands
                [3 ]Cambridge Public Health, University of Cambridge, Cambridge, United Kingdom
                [4 ]Population Health Sciences Institute, Newcastle University, Newcastle, United Kingdom
                Author notes
                Article Information
                Accepted for Publication: December 10, 2020.
                Published Online: March 29, 2021. doi:10.1001/jamapediatrics.2021.0054
                Open Access: This is an open access article distributed under the terms of the CC-BY License. © 2021 Roman-Urrestarazu A et al. JAMA Pediatrics.
                Corresponding Author: Andres Roman-Urrestarazu, MD, PhD, Autism Research Centre, University of Cambridge, Douglas House, 18b Trumpington Rd, Cambridge CB2 8AH, United Kingdom ( aer56@ 123456medschl.cam.ac.uk ).
                Author Contributions: Drs Brayne and Baron-Cohen contributed equally to this study. Drs Roman-Urrestarazu and Allison had full access to all the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis.
                Concept and design: Roman-Urrestarazu, Baron-Cohen.
                Acquisition, analysis, or interpretation of data: All authors.
                Drafting of the manuscript: Roman-Urrestarazu, van Kessel, Baron-Cohen.
                Critical revision of the manuscript for important intellectual content: All authors.
                Statistical analysis: Roman-Urrestarazu, Matthews.
                Obtained funding: Roman-Urrestarazu, Baron-Cohen.
                Administrative, technical, or material support: Roman-Urrestarazu, van Kessel.
                Supervision: Roman-Urrestarazu, Brayne, Baron-Cohen.
                Conflict of Interest Disclosures: Dr Brayne reported receiving a Gillings Family Foundation Funded Fellowship, co-supervised by Drs Roman-Urrestarazu and Baron-Cohen during the conduct of the study. No other disclosures were reported.
                Funding/Support: This study was supported by funding from the Gillings Fellowship in Global Public Health and Autism Research (Dr Roman-Urrestarazu) and grant YOG054 to the Cambridge Institute of Public Health (principal investigator, Dr Brayne). For the purpose of open access, Dr Baron-Cohen has applied a CC BY public copyright license to any author accepted manuscript version arising from this submission. In addition, the research was supported by grant agreement 777394 from Innovative Medicines Initiative 2 Joint Undertaking, supported by the European Union’s Horizon 2020 research and innovation programme, European Federation of Pharmaceutical Industries and Associations, Autism Speaks, Autistica, and the Simons Foundation Autism Research Initiative (Dr Baron-Cohen); the Autism Research Trust (Dr Baron-Cohen); Autistica (Dr Baron-Cohen); the Medical Research Council (Dr Baron-Cohen); grant 214322/Z/18/Z from the Wellcome Trust (Dr Baron-Cohen); and the National Institute for Health Research (NIHR) Cambridge Biomedical Research Centre (Dr Baron-Cohen). The research was supported by the NIHR Collaboration for Leadership in Applied Health Research and Care East of England at Cambridgeshire and Peterborough NHS (National Health Service) Foundation Trust.
                Role of the Funder/Sponsor: The sponsors had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.
                Disclaimer: The views expressed are those of the author(s) and are not necessarily those of the NHS, the NIHR, or the Department of Health and Social Care.
                Article
                poi210003
                10.1001/jamapediatrics.2021.0054
                8008434
                33779707
                cf8dd5cc-9243-4840-ac4d-4fdc042719d6
                Copyright 2021 Roman-Urrestarazu A et al. JAMA Pediatrics.

                This is an open access article distributed under the terms of the CC-BY License.

                History
                : 9 November 2020
                : 10 December 2020
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