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      What should services for people with autism look like?

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      Advances in Autism
      Emerald Publishing
      Autism, Services, Adults, Autism spectrum condition, Quality of life, Person-centred approaches

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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

          – The purpose of this paper is to examine the key components and approaches which contribute to good autism services.

          Design/methodology/approach

          – This paper reviews some of the literature around quality of life in autism services and describes the approach taken by The National Autistic Society.

          Findings

          – There is minimal research to enable service providers to shape their services according to what is most important for people with autism. The SPELL framework used by The National Autistic Society provides an approach which can be adapted to individual needs. Good autism services need to be based on a sound and practical understanding of autism.

          Practical implications

          – People on the autism spectrum should be involved in determining what outcomes are most important to them, and services should then be based around those needs. Services therefore need to be individualised and person centred, underpinned by an in-depth knowledge and understanding of autism.

          Originality/value

          – This review highlights the importance of people being involved in determining what is important to them and how services which support them should be shaped and delivered.

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          Most cited references8

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          On the ontological status of autism: the ‘double empathy problem’

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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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              The concept of quality of life: what we know and do not know.

              Over the past two decades the concept of quality of life (QOL) has increasingly become a focus for research and application in the fields of education/special education, health care (physical and behavioural), social services (disabilities and ageing), and families. This article summarizes our current understanding of the construct of individual QOL as it pertains to persons with intellectual disabilities (ID). The article's three major sections discuss what we know, what we are beginning to understand, and what we still do not know about the QOL construct. We currently know the importance of the QOL construct as a service delivery principle, along with its current use and multidimensional nature. We are beginning to understand the importance of methodological pluralism in the assessment of QOL, the multiple uses of quality indicators, the predictors of assessed QOL, the effects of different data collection strategies, and the etic (universal) and emic (culture-bound) properties of the construct. We have yet to understand fully the use of QOL-related outcomes in programme change, how to best evaluate the outcomes of QOL-related services, and how to use the concept of QOL to impact public and disability reform. The article concludes with a brief discussion of future challenges related to demonstrating the concept's social validity and positive impact on the lives of persons with ID.
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                Author and article information

                Contributors
                Journal
                AIA
                10.1108/AIA
                Advances in Autism
                Emerald Publishing
                2056-3868
                30 July 2015
                30 July 2015
                : 1
                : 1
                : 41-46
                Affiliations
                The National Autistic Society, The Centre for Autism, London, United Kingdom.
                Article
                AIA-05-2015-0005.pdf
                10.1108/AIA-05-2015-0005
                a7d6953e-5d1e-42ce-86b7-97a4edc78cca
                © Emerald Group Publishing Limited
                History
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                Articles
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                Health & social care
                Learning & intellectual disabilities
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                Health & Social care
                Autism,Services,Adults,Autism spectrum condition,Quality of life,Person-centred approaches

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