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      ‘People like me don’t get support’: Autistic adults’ experiences of support and treatment for mental health difficulties, self-injury and suicidality

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          Abstract

          Autistic people are at high risk of mental health problems, self-injury and suicidality. However, no studies have explored autistic peoples’ experiences of treatment and support for these difficulties. In partnership with a steering group of autistic adults, an online survey was developed to explore these individuals’ experiences of treatment and support for mental health problems, self-injury and suicidality for the first time. A total of 200 autistic adults (122 females, 77 males and 1 unreported) aged 18–67 (mean = 38.9 years, standard deviation = 11.5), without co-occurring intellectual disability, completed the online survey. Thematic analysis of open-ended questions resulted in an overarching theme that individually tailored treatment and support was both beneficial and desirable, which consisted of three underlying themes: (1) difficulties in accessing treatment and support; (2) lack of understanding and knowledge of autistic people with co-occurring mental health difficulties and (3) appropriate treatment and support, or lack of, impacted autistic people’s well-being and likelihood of seeing suicide as their future. Findings demonstrate an urgent need for autism treatment pathways in mental health services.

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

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            Quantifying and exploring camouflaging in men and women with autism

            Autobiographical descriptions and clinician observations suggest that some individuals with autism, particularly females, ‘camouflage’ their social communication difficulties, which may require considerable cognitive effort and lead to increased stress, anxiety and depression. Using data from 60 age- and IQ-matched men and women with autism (without intellectual disability), we operationalized camouflaging in adults with autism for the first time as the quantitative discrepancy between the person’s ‘external’ behavioural presentation in social–interpersonal contexts (measured by the Autism Diagnostic Observation Schedule) and the person’s ‘internal’ status (dispositional traits measured by the Autism Spectrum Quotient and social cognitive capability measured by the ‘Reading the Mind in the Eyes’ Test). We found that the operationalized camouflaging measure was not significantly correlated with age or IQ. On average, women with autism had higher camouflaging scores than men with autism (Cohen’s d = 0.98), with substantial variability in both groups. Greater camouflaging was associated with more depressive symptoms in men and better signal-detection sensitivity in women with autism. The neuroanatomical association with camouflaging score was largely sex/gender-dependent and significant only in women: from reverse inference, the most correlated cognitive terms were about emotion and memory. The underlying constructs, measurement, mechanisms, consequences and heterogeneity of camouflaging in autism warrant further investigation.
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              Making the future together: Shaping autism research through meaningful participation

              Participatory research methods connect researchers with relevant communities to achieve shared goals. These methods can deliver results that are relevant to people’s lives and thus likely to have a positive impact. In the context of a large and growing body of autism research, with continued poor implementation, and some evidence of community dissatisfaction, there is a powerful case for participatory autism research. In order to develop a framework for such collaborative working, a UK seminar series was organised and co-produced by autistic and non-autistic people with academic, practitioner and lived expertise. This article reports on the outcomes from the series, identifying five topics relevant to building a community of practice in participatory research: Respect, Authenticity, Assumptions, Infrastructure and Empathy. Each topic is connected to a specific example from within and beyond research, to inspire new practices in the field. We call for the development of participatory research skills among the autism research community and the facilitation of greater autistic leadership of, and partnership in, research. Such work, if delivered to a high standard, is likely to lead to better translation into practice and improved outcomes for autistic people and those who support them.
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                Author and article information

                Journal
                Autism
                Autism
                AUT
                spaut
                Autism
                SAGE Publications (Sage UK: London, England )
                1362-3613
                1461-7005
                29 November 2018
                August 2019
                : 23
                : 6
                : 1431-1441
                Affiliations
                [1 ]Coventry University, UK
                [2 ]Coventry and Warwickshire Partnership NHS Trust, UK
                [3 ]University of Cambridge, UK
                [4 ]Cambridgeshire and Peterborough NHS Foundation Trust, UK
                [5 ]University of Nottingham, UK
                Author notes
                [*]Sarah Cassidy, School of Psychology, University of Nottingham, University Park, Nottingham NG7 2RD, UK. Email: Sarah.Cassidy@ 123456Nottingham.ac.uk
                Author information
                https://orcid.org/0000-0003-1982-3034
                Article
                10.1177_1362361318816053
                10.1177/1362361318816053
                6625034
                30497279
                6fe93abc-e935-4462-882c-0482b546c007
                © The Author(s) 2018

                This article is distributed under the terms of the Creative Commons Attribution 4.0 License ( http://www.creativecommons.org/licenses/by/4.0/) 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 pages ( https://us.sagepub.com/en-us/nam/open-access-at-sage).

                History
                Funding
                Funded by: Economic and Social Research Council, FundRef https://doi.org/10.13039/501100000269;
                Award ID: ES/N000501/2
                Categories
                Original Articles

                autism spectrum condition,mental health,self-injury,suicide,support,treatment

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