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    What should autism research focus upon? Community views and priorities from the United Kingdom

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        Abstract

        The rise in the measured prevalence of autism has been accompanied by much new research and research investment internationally. This study sought to establish whether the pattern of current UK autism research funding maps on to the concerns of the autism community. Interviews and focus groups were conducted with autistic adults, family members, practitioners and researchers to identify their priorities for research. We also captured the views of a large number of stakeholders via an online survey. There was a clear disparity between the United Kingdom’s pattern of funding for autism research and the priorities articulated by the majority of participants. There was general consensus that future priorities for autism research should lie in those areas that make a difference to people’s day-to-day lives. There needs to be greater involvement of the autism community both in priority setting and in research more broadly to ensure that resources reach where they are most needed and can make the most impact.

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        Most cited references 15

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        Global Prevalence of Autism and Other Pervasive Developmental Disorders

         Mayada Elsabbagh,  Gauri Divan,  Yun-Joo Koh … (2012)
        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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          Epidemiology of autism spectrum disorders in adults in the community in England.

           Traolach Brugha,  Sally McManus,  John Bankart … (2011)
          To our knowledge, there is no published information on the epidemiology of autism spectrum disorders (ASDs) in adults. If the prevalence of autism is increasing, rates in older adults would be expected to be lower than rates among younger adults. To estimate the prevalence and characteristics of adults with ASD living in the community in England. A stratified, multiphase random sample was used in the third national survey of psychiatric morbidity in adults in England in 2007. Survey data were weighted to take account of study design and nonresponse so that the results were representative of the household population. General community (ie, private households) in England. Adults (people 16 years or older). Autism Diagnostic Observation Schedule, Module 4 in phase 2 validated against the Autism Diagnostic Interview-Revised and Diagnostic Interview for Social and Communication Disorders in phase 3. A 20-item subset of the Autism-Spectrum Quotient self-completion questionnaire was used in phase 1 to select respondents for phase 2. Respondents also provided information on sociodemographics and their use of mental health services. Of 7461 adult participants who provided a complete phase 1 interview, 618 completed phase 2 diagnostic assessments. The weighted prevalence of ASD in adults was estimated to be 9.8 per 1000 (95% confidence interval, 3.0-16.5). Prevalence was not related to the respondent's age. Rates were higher in men, those without educational qualifications, and those living in rented social (government-financed) housing. There was no evidence of increased use of services for mental health problems. Conducting epidemiologic research on ASD in adults is feasible. The prevalence of ASD in this population is similar to that found in children. The lack of an association with age is consistent with there having been no increase in prevalence and with its causes being temporally constant. Adults with ASD living in the community are socially disadvantaged and tend to be unrecognized.
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            Social outcomes in mid- to later adulthood among individuals diagnosed with autism and average nonverbal IQ as children.

             Michael Rutter,  Sarah Savage,  Patricia Howlin … (2013)
            To describe current social functioning in a clinical sample of 60 adults with autism (mean age = 44 years) who were all of average nonverbal IQ (70+) when first diagnosed (mean age = 6.75 years). Outcome measures included standardized diagnostic and cognitive assessments and questionnaires on social functioning. Child and adult variables related to current outcomes were explored. All individuals continued to meet criteria for autism spectrum disorder (ASD) on the Autism Diagnostic Interview-Revised (ADI-R), but severity of autism symptoms declined over time. Nevertheless, only 10 individuals (17%) were rated as having a "good" or "very good" outcome; the majority (60%) were assessed as having "poor" or "very poor" outcomes. The strongest predictor of adult outcome was the Reciprocal Social Interaction domain score on the ADI at diagnostic confirmation. Change over time was further examined in a subgroup (n = 44) previously assessed 20 years ago earlier (mean age = 26 years). Although severity of autism had continued to decrease during the adult period, social outcomes were poorer than in younger adulthood. In this cohort of adults first diagnosed with autism, on average, 37 years previously, social inclusion remains very limited, despite general improvements in autism symptomatology with age. Whether these findings will be replicated in future generations of children with autism, who now have the benefits of earlier diagnosis and wider access to specialist provision, needs to be the focus of further longitudinal research. Copyright © 2013 American Academy of Child and Adolescent Psychiatry. Published by Elsevier Inc. All rights reserved.
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              Author and article information

              Affiliations
              [1 ]Institute of Education, University of London, UK
              [2 ]University of Western Australia, Australia
              [3 ]Wellcome Trust, London, UK
              [4 ]King’s College London, Institute of Psychiatry, UK
              Author notes
              Liz Pellicano, Centre for Research in Autism and Education (CRAE), Department of Psychology and Human Development, Institute of Education, University of London, 25 Woburn Square, London WC1H 0AA, UK. Email: l.pellicano@ 123456ioe.ac.uk
              Journal
              Journal ID (nlm-ta): Autism
              Journal ID (iso-abbrev): Autism
              Journal ID (publisher-id): AUT
              Journal ID (hwp): spaut
              Title: Autism
              Publisher: SAGE Publications (Sage UK: London, England )
              ISSN (Print): 1362-3613
              ISSN (Electronic): 1461-7005
              Publication date (Print and electronic): October 2014
              Publication date (Print): October 2014
              Volume: 18
              Issue: 7 , Special issue on: Autism and Society
              Pages: 756-770
              PubMed ID: 24789871
              PMC ID: 4230972
              DOI: 10.1177/1362361314529627
              Publisher ID: 10.1177_1362361314529627
              Copyright statement: © The Author(s) 2014

              License:

              This article is distributed under the terms of the Creative Commons Attribution 3.0 License ( http://www.creativecommons.org/licenses/by/3.0/) 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 ( http://www.uk.sagepub.com/aboutus/openaccess.htm).

              Categories
              Subject: Special Issue Articles

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              Keywords: priority setting, autism community, autism research, decision-making

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