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      Understanding profound autism: implications for stigma and supports

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          Abstract

          Introduction

          Societal perceptions and lack of understanding of autism spectrum disorder can be stigmatizing for autistic individuals and their families. This may be particularly the case for individuals who meet criteria for profound autism. Despite the considerable service needs of this marginalized group, there is little data on the prevalence of profound autism, nor on the experiences of those with profound autism and their families.

          Methods

          The current study leveraged a mixed-methods approach to address these gaps. First, the prevalence of profound autism was examined in six samples—three from the United States and three from Western Europe. Second, inductive thematic analysis was used to code interviews from 20 caregivers of profoundly autistic adults.

          Results

          The prevalence of profound autism varied widely across the six samples—from 11% to 48%. There were also notable differences between samples in prevalence by gender, race, and ethnicity. Two overarching themes were identified via inductive thematic analysis: Community Perceptions of Autism and Family Support Needs and Advocacy Challenges. Though caregivers were not directly asked about stigmatization during interviews, 85% of caregivers reported at least one instance of perceived stigma.

          Discussion

          Future research should continue to examine the unique needs and stigmatization experiences of profoundly autistic individuals and their families across the life course.

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          Most cited references80

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          Using thematic analysis in psychology

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            Psychiatric disorders in children with autism spectrum disorders: prevalence, comorbidity, and associated factors in a population-derived sample.

            Autism spectrum disorders are now recognized to occur in up to 1% of the population and to be a major public health concern because of their early onset, lifelong persistence, and high levels of associated impairment. Little is known about the associated psychiatric disorders that may contribute to impairment. We identify the rates and type of psychiatric comorbidity associated with ASDs and explore the associations with variables identified as risk factors for child psychiatric disorders. A subgroup of 112 ten- to 14-year old children from a population-derived cohort was assessed for other child psychiatric disorders (3 months' prevalence) through parent interview using the Child and Adolescent Psychiatric Assessment. DSM-IV diagnoses for childhood anxiety disorders, depressive disorders, oppositional defiant and conduct disorders, attention-deficit/hyperactivity disorder, tic disorders, trichotillomania, enuresis, and encopresis were identified. Seventy percent of participants had at least one comorbid disorder and 41% had two or more. The most common diagnoses were social anxiety disorder (29.2%, 95% confidence interval [CI)] 13.2-45.1), attention-deficit/hyperactivity disorder (28.2%, 95% CI 13.3-43.0), and oppositional defiant disorder (28.1%, 95% CI 13.9-42.2). Of those with attention-deficit/hyperactivity disorder, 84% received a second comorbid diagnosis. There were few associations between putative risk factors and psychiatric disorder. Psychiatric disorders are common and frequently multiple in children with autism spectrum disorders. They may provide targets for intervention and should be routinely evaluated in the clinical assessment of this group.
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              Global Prevalence of Autism and Other Pervasive Developmental Disorders

              We provide a systematic review of epidemiological surveys of autistic disorder and pervasive developmental disorders (PDDs) worldwide. A secondary aim was to consider the possible impact of geographic, cultural/ethnic, and socioeconomic factors on prevalence estimates and on clinical presentation of PDD. Based on the evidence reviewed, the median of prevalence estimates of autism spectrum disorders was 62/10 000. While existing estimates are variable, the evidence reviewed does not support differences in PDD prevalence by geographic region nor of a strong impact of ethnic/cultural or socioeconomic factors. However, power to detect such effects is seriously limited in existing data sets, particularly in low-income countries. While it is clear that prevalence estimates have increased over time and these vary in different neighboring and distant regions, these findings most likely represent broadening of the diagnostic concets, diagnostic switching from other developmental disabilities to PDD, service availability, and awareness of autistic spectrum disorders in both the lay and professional public. The lack of evidence from the majority of the world's population suggests a critical need for further research and capacity building in low- and middle-income countries. Autism Res 2012, 5: 160–179. © 2012 International Society for Autism Research, Wiley Periodicals, Inc.
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                Author and article information

                Contributors
                URI : https://loop.frontiersin.org/people/2225927/overviewRole: Role: Role:
                Role: Role: Role:
                Role: Role:
                Role: Role:
                URI : https://loop.frontiersin.org/people/333175/overviewRole: Role: Role:
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                Journal
                Front Psychiatry
                Front Psychiatry
                Front. Psychiatry
                Frontiers in Psychiatry
                Frontiers Media S.A.
                1664-0640
                22 January 2024
                2024
                : 15
                : 1287096
                Affiliations
                [1] 1Department of Psychiatry and Biobehavioral Sciences, University of California, Los Angeles , Los Angeles, CA, United States
                [2] 2Department of Psychology, St. Mary’s College of California , Moraga, CA, United States
                [3] 3Department of History and Sociology of Science, University of Pennsylvania , Philadelphia, PA, United States
                [4] 4Fundación Brincar por un Autismo Feliz , Buenos Aires, Argentina
                [5] 5Consejo Nacional de Investigaciones Científicas Y Técnicas , Buenos Aires, Argentina
                [6] 6Thompson Center for Autism and Neurodevelopment, University of Missouri , Columbia, MO, United States
                Author notes

                Edited by: April Hargreaves, National College of Ireland, Ireland

                Reviewed by: Catherine Caldwell-Harris, Boston University, United States; Arianna Bentenuto, University of Trento, Italy

                *Correspondence: Elaine B. Clarke, eclarke@ 123456mednet.ucla.edu
                Article
                10.3389/fpsyt.2024.1287096
                10839016
                38317766
                66a4c8fa-42c4-4bf5-8706-6c31238c0ac0
                Copyright © 2024 Clarke, McCauley, Lutz, Gotelli, Sheinkopf and Lord.

                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
                : 01 September 2023
                : 02 January 2024
                Page count
                Figures: 0, Tables: 3, Equations: 0, References: 80, Pages: 15, Words: 13456
                Funding
                The author(s) declare financial support was received for the research, authorship, and/or publication of this article. This study was funded by the National Institute of Child Health and Human Development R01 HD081199 (PI: CL), the National Institute of Mental Health R01MH081873 (PI: CL), Autism Speaks 12854 (PI: EC/CL), and the Saint Mary’s College Summer Research Program (PI: JM). The AAA study was supported by grants from the National Institute on Aging (R01 AG08768, Mailick, PI), the National Institute of Mental Health (R01 MH121438, DaWalt & Taylor, MPIs) and Autism Speaks (#7724, Mailick, PI). The RI-CART study was supported by grants from the Simons Foundation Autism Research Initiative (286756, Morrow, PI and 454555, Sheinkopf, PI).
                Categories
                Psychiatry
                Original Research
                Custom metadata
                Autism

                Clinical Psychology & Psychiatry
                autism spectrum disorder,profound autism,stigma and awareness,prevalence,mixed method,autistic adults,qualitative interview analysis

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