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      Are we good and are we safe? Measuring quality and assessing risk in an adult autism diagnostic service

      Advances in Autism
      Emerald Publishing Limited
      Autism, Intellectual disability, Adults, Learning disability, Risk assessment, Outcome measures

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          Abstract

          Purpose Leeds autism diagnostic service is an adult autism diagnostic service for people of any intellectual ability which also offers consultancy to service users/carers or professionals, as well as a wide range of autism training. The service was set up as a pilot in 2011 and a paper describing the service development was published in this journal in November 2015. The purpose of this paper is to describe the approach taken to measure the quality of the service the authors provide and accurately assess risk in adults with autism. Design/methodology/approach The process of evaluating appropriate outcome measures is described, along with considering appropriate risk assessment tools for use in the community. Over 200 people each year complete the autism diagnostic pathway, and 164 patients were invited to respond to service evaluation questionnaires in 2014. Findings To date, the most useful outcome measures for this group include a prospective service user questionnaire which enables service user opinion to influence service development. In the absence of any appropriate autism-specific risk assessment tools, the service has developed one which it is currently piloting. This has proved particularly useful in the consultancy setting Originality/value This paper is a follow-up paper looking at the day-to-day issues that the team have had to grapple with – how do you assess whether what you are doing is providing the best possible service for the people that you serve and how do you accurately assess risk in this population?

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          Most cited references23

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          Suicidal ideation and suicide plans or attempts in adults with Asperger's syndrome attending a specialist diagnostic clinic: a clinical cohort study.

          Asperger's syndrome in adulthood is frequently associated with depression, but few studies have explored the lifetime experience of self-reported suicidal ideation and suicide plans or attempts in this clinical group. We aimed to assess this prevalence in a clinical cohort of patients in the UK.
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            The Diagnostic Interview for Social and Communication Disorders: background, inter-rater reliability and clinical use

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              Outcome measures in intervention trials for adults with autism spectrum disorders; a systematic review of assessments of core autism features and associated emotional and behavioural problems

              A systematic review was conducted of outcome measures used in treatment trials for older adolescents and adults with autism spectrum disorders (ASDs). Of 818 titles only 30 articles (19 of which involved pharmacological treatments) were identified that met inclusion criteria (sample size > 5; mean age of group > 15 years; mean IQ > 30; ASD diagnosis confirmed; use of objective ASD outcome measures; focus on symptoms core to or typically associated with ASDs). Selected studies included randomized and placebo‐controlled trials, retrospective assessment studies, case series and open label or case‐control trials. Use of outcome measures varied with frequent use of non‐standardized assessments, very little use of measures designed specifically for individuals with ASD or of instruments focusing on core ASD deficits, such as communication or social functioning. Most commonly used were the Clinical Global Impression (CGI) rating scale and the Yale–Brown Obsessive Compulsive Scale (Y‐BOCS). The strengths or deficiencies of the outcome measures used were not systematically evaluated. Although there are now many well controlled treatment trials for children with ASDs, adult intervention research is very limited. The lack of valid and reliable outcome measures for adults with ASDs compromises attempts at treatment evaluation. Copyright © 2015 John Wiley & Sons, Ltd.
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                Author and article information

                Journal
                10.1108/AIA-03-2016-0008

                Health & Social care
                Autism,Intellectual disability,Adults,Learning disability,Risk assessment,Outcome measures

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