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      Parent-Researcher Perspectives on Role Intersectionality Related to Autism Research

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          Abstract

          Although parents of children with autism who are also experts in a related profession have been instrumental in shaping current practices, there is little known about parent-researchers and the benefits and obstacles to including individuals with these intersectional identities on autism focused research teams. The following study used collaborative autoethnographies from three parent-researchers hired for a large scale, federally funded project. The parent-researchers, and co-authors, collaborated on all phases of the reported study. Common themes generated from the shared perspectives included: prioritizing children and professional sacrifices; professional training as an asset for parents; potential bias toward parents in professional contexts; assets as parent-professionals; and obstacles for maintaining intersectional roles of parent-professionals. Recommendations for autism researchers and considerations for employing and supporting parent-researchers are discussed.

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          Using thematic analysis in psychology

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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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                Author and article information

                Contributors
                Journal
                Front Rehabil Sci
                Front Rehabil Sci
                Front. Rehabilit. Sci.
                Frontiers in Rehabilitation Sciences
                Frontiers Media S.A.
                2673-6861
                2673-6861
                14 March 2022
                2022
                : 3
                : 718398
                Affiliations
                Department of Special Education, San Diego State University , San Diego, CA, United States
                Author notes

                Edited by: Gloria K. Lee, Michigan State University, United States

                Reviewed by: Eun-Jeong Lee, Illinois Institute of Technology, United States; Daniel Mont, Center for Inclusive Policy, United States

                *Correspondence: Laura J. Hall ljhall@ 123456sdsu.edu

                This article was submitted to Translational Research in Rehabilitation, a section of the journal Frontiers in Rehabilitation Sciences

                Article
                10.3389/fresc.2022.718398
                9397658
                7769eb78-0005-4c52-9298-14e05423353a
                Copyright © 2022 Hall, Hoxie, Grundon and Cordero.

                This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

                History
                : 31 May 2021
                : 17 February 2022
                Page count
                Figures: 0, Tables: 0, Equations: 0, References: 24, Pages: 14, Words: 13886
                Funding
                Funded by: Institute of Education Sciences, doi 10.13039/100005246;
                Categories
                Rehabilitation Sciences
                Original Research

                parent-researcher,autism,co-researcher,autoethnography,parent-professional,parent participation

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