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      100 years from now: comparing parental perspectives about supports for adults with autism in the USA and China

      research-article
      Diana Baker , Helen McCabe , Mary Kelly , Tian Jiang
      Advances in Autism
      Emerald Publishing
      Autism, Transition, Adulthood, Aging, China, Services, International, Adults, Quality of life

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          There is no author summary for this article yet. Authors can add summaries to their articles on ScienceOpen to make them more accessible to a non-specialist audience.

          Abstract

          Purpose

          Findings from a comparative qualitative study with parents in the USA and China increase the understanding of experiences of adults with autism in both countries.

          Design/methodology/approach

          Semi-Structured interviews were conducted with families in the USA and in China. In total, 18 families participated in the study – 7 in the USA, 11 in China.

          Findings

          Analysis of the comparative data led to the emergence of three overarching themes, expressing both similarities and differences in experiences: 1) transition to adult services plays out differently in the two nations, 2) parent advocacy and efforts in supporting and securing services for their children are strong in both countries but are also defined by the variability in access to services and 3) due to the scarcity of adult services in their country, Chinese parents express significantly more worries about their own aging and mortality as compared with USA parents.

          Research limitations/implications

          Practical implications and directions for future research are discussed.

          Originality/value

          By examining the experiences of families of adults with autism in the USA and China, the research reveals themes that would not be visible in a single-nation study.

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          Most cited references41

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          The Coding Manual for Qualitative Researchers

          Johnny Saldaña’s unique and invaluable manual demystifies the qualitative coding process with a comprehensive assessment of different coding types, examples and exercises. The ideal reference for students, teachers, and practitioners of qualitative inquiry, it is essential reading across the social sciences and neatly guides you through the multiple approaches available for coding qualitative data.</p> <p>Its wide array of strategies, from the more straightforward to the more complex, is skillfully explained and carefully exemplified providing a complete toolkit of codes and skills that can be applied to any research project. For each code Saldaña provides information about the method′s origin, gives a detailed description of the method, demonstrates its practical applications, and sets out a clearly illustrated example with analytic follow-up. <br> <br> Now with a companion website, the book is supported by: </p> <ul> <li>SAGE journal articles showing coding being applied to real research </li> <li>Sample transcripts highlighting coding techniques </li> <li>Links to CAQDAS sites to introduce relevant software </li> <li>Practical student exercises Links to video and digital content </li> </ul> <p>This international bestseller is an extremely usable, robust manual and is a must-have resource for qualitative researchers at all levels.<br> <br> Click here for a listing of Johnny Saldaña′s upcoming workshops.</p>
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            Young adult outcome of autism spectrum disorders.

            To learn about the lives of young adults with ASD, families with children born 1974-1984, diagnosed as preschoolers and followed into adolescence were contacted by mail. Of 76 eligible, 48 (63%) participated in a telephone interview. Global outcome scores were assigned based on work, friendships and independence. At mean age 24, half had good to fair outcome and 46% poor. Co-morbid conditions, obesity and medication use were common. Families noted unmet needs particularly in social areas. Multilinear regression indicated a combination of IQ and CARS score at age 11 predicted outcome. Earlier studies reported more adults with ASD who had poor to very poor outcomes, however current young people had more opportunities, and thus better results were expected.
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              • Abstract: found
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              Employment and post-secondary educational activities for young adults with autism spectrum disorders during the transition to adulthood.

              This report describes the post-high school educational and occupational activities for 66 young adults with autism spectrum disorders who had recently exited the secondary school system. Analyses indicated low rates of employment in the community, with the majority of young adults (56%) spending time in sheltered workshops or day activity centers. Young adults with ASD without an intellectual disability were three times more likely to have no daytime activities compared to adults with ASD who had an intellectual disability. Differences in behavioral functioning were observed by employment/day activity group. Our findings suggest that the current service system may be inadequate to accommodate the needs of youths with ASD who do not have intellectual disabilities during the transition to adulthood.
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                Author and article information

                Contributors
                Journal
                AIA
                10.1108/AIA
                Advances in Autism
                AIA
                Emerald Publishing
                2056-3868
                2056-3868
                16 July 2020
                16 July 2020
                : 6
                : 3
                : 241-254
                Affiliations
                [1]Department of Education, Hobart and William Smith Colleges , Geneva, New York, USA
                [2]Department of Early Childhood Special Education, University of Maine at Farmington , Farmington, Maine, USA and The Five Project for International Autism and Disability Support, Randolph, Massachusetts, USA
                [3]Department of Education, Hobart and William Smith Colleges , Geneva, New York, USA
                [4] University of Rochester , Rochester, NY
                Author notes
                Diana Baker can be contacted at: baker@hws.edu
                Article
                646797 AIA-10-2019-0034.pdf AIA-10-2019-0034
                10.1108/AIA-10-2019-0034
                59653abf-bc2b-42bb-a0ed-e53589028e60
                © Emerald Publishing Limited
                History
                : 12 October 2019
                : 05 May 2020
                : 06 May 2020
                Page count
                Figures: 0, Tables: 1, Equations: 0, References: 40, Pages: 1, Words: 8761
                Categories
                research-article, Research paper
                cat-HSC, Health & social care
                cat-LID, Learning & intellectual disabilities
                Custom metadata
                M
                Web-ready article package
                Yes
                Yes
                JOURNAL
                included

                Health & Social care
                Autism,Quality of life,Adults,International,Services,China,Aging,Adulthood,Transition
                Health & Social care
                Autism, Quality of life, Adults, International, Services, China, Aging, Adulthood, Transition

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