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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

      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.

        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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          Adult outcome for children with autism.

          Information on long-term prognosis in autism is limited. Outcome is known to be poor for those with an IQ below 50, but there have been few systematic studies of individuals with an IQ above this. Sixty-eight individuals meeting criteria for autism and with a performance IQ of 50 or above in childhood were followed up as adults. Their mean age when first seen was 7 years (range 3-15 years); at follow-up the average age was 29 years (range 21-48 years). Outcome measures included standardised cognitive, language and attainment tests. Information on social, communication and behavioural problems was obtained from the Autism Diagnostic Interview (ADI). Although a minority of adults had achieved relatively high levels of independence, most remained very dependent on their families or other support services. Few lived alone, had close friends, or permanent employment. Communication generally was impaired, and reading and spelling abilities were poor. Stereotyped behaviours or interests frequently persisted into adulthood. Ten individuals had developed epilepsy. Overall, only 12% were rated as having a 'Very Good' outcome; 10% were rated as 'Good' and 19% as 'Fair'. The majority was rated as having a 'Poor' (46%) or 'Very Poor' (12%) outcome. Individuals with a childhood performance IQ of at least 70 had a significantly better outcome than those with an IQ below this. However, within the normal IQ range outcome was very variable and, on an individual level, neither verbal nor performance IQ proved to be consistent prognostic indicators. Although outcome for adults with autism has improved over recent years, many remain highly dependent on others for support. This study provides some information on prognostic indicators, but more fine-grained research is needed into the childhood variables that are associated with good or poor outcome.
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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
            Autism
            Autism
            AUT
            spaut
            Autism
            SAGE Publications (Sage UK: London, England )
            1362-3613
            1461-7005
            October 2014
            October 2014
            : 18
            : 7 , Special issue on: Autism and Society
            : 756-770
            24789871 4230972 10.1177/1362361314529627 10.1177_1362361314529627
            © The Author(s) 2014

            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).

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