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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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          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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            Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: the Special Needs and Autism Project (SNAP).

            Gillian Baird, Emily Simonoff, Andrew Pickles … (2006)
            Recent reports have suggested that the prevalence of autism and related spectrum disorders (ASDs) is substantially higher than previously recognised. We sought to quantify prevalence of ASDs in children in South Thames, UK. Within a total population cohort of 56 946 children aged 9-10 years, we screened all those with a current clinical diagnosis of ASD (n=255) or those judged to be at risk for being an undetected case (n=1515). A stratified subsample (n=255) received a comprehensive diagnostic assessment, including standardised clinical observation, and parent interview assessments of autistic symptoms, language, and intelligence quotient (IQ). Clinical consensus diagnoses of childhood autism and other ASDs were derived. We used a sample weighting procedure to estimate prevalence. The prevalence of childhood autism was 38.9 per 10,000 (95% CI 29.9-47.8) and that of other ASDs was 77.2 per 10,000 (52.1-102.3), making the total prevalence of all ASDs 116.1 per 10,000 (90.4-141.8). A narrower definition of childhood autism, which combined clinical consensus with instrument criteria for past and current presentation, provided a prevalence of 24.8 per 10,000 (17.6-32.0). The rate of previous local identification was lowest for children of less educated parents. Prevalence of autism and related ASDs is substantially greater than previously recognised. Whether the increase is due to better ascertainment, broadening diagnostic criteria, or increased incidence is unclear. Services in health, education, and social care will need to recognise the needs of children with some form of ASD, who constitute 1% of the child population.
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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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                Author and article information

                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
                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
                Article
                Publisher ID: 10.1177_1362361314529627
                DOI: 10.1177/1362361314529627
                PMC ID: 4230972
                PubMed ID: 24789871
                SO-VID: f01e8b98-e02c-4638-97d8-46c43c2b0b37
                Copyright © © 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).

                History
                Categories
                Subject: Special Issue Articles

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

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