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      ‘I was exhausted trying to figure it out’: The experiences of females receiving an autism diagnosis in middle to late adulthood

      1 , 2 , 1 , 2 , 1
      Autism
      SAGE Publications

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          Abstract

          <p class="first" id="d1591186e85">Females often receive autism spectrum condition diagnoses later than males, leaving needs misunderstood. This study aimed to explore the lived experiences of female adults diagnosed with an autism spectrum condition in middle to late adulthood. Eleven autistic females diagnosed over the age of 40 years completed semi-structured interviews, analysed using Interpretative Phenomenological Analysis. Four superordinate themes emerged: A hidden condition (pretending to be normal and fitting in; mental health and mislabelling), The process of acceptance (initial reactions and search for understanding; re-living life through a new lens), The impact of others post-diagnosis (initial reactions; stereotyped assumptions), and A new identity on the autism spectrum (negotiating relationships, connections and community; changing well-being and views of the self; the meaning of diagnosis). Findings highlight several factors not previously identified that affect late diagnosis in females, including widespread limited understandings of others. Diagnosis was experienced by several participants as facilitating transition from being self-critical to self-compassionate, coupled with an increased sense of agency. Participants experienced a change in identity that enabled greater acceptance and understanding of the self. However, this was painful to adjust to at such a late stage. </p>

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          Giving voice and making sense in interpretative phenomenological analysis

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            Deficit, difference, or both? Autism and neurodiversity.

            The neurodiversity movement challenges the medical model's interest in causation and cure, celebrating autism as an inseparable aspect of identity. Using an online survey, we examined the perceived opposition between the medical model and the neurodiversity movement by assessing conceptions of autism and neurodiversity among people with different relations to autism. Participants (N = 657) included autistic people, relatives and friends of autistic people, and people with no specified relation to autism. Self-identification as autistic and neurodiversity awareness were associated with viewing autism as a positive identity that needs no cure, suggesting core differences between the medical model and the neurodiversity movement. Nevertheless, results suggested substantial overlap between these approaches to autism. Recognition of the negative aspects of autism and endorsement of parenting practices that celebrate and ameliorate but do not eliminate autism did not differ based on relation to autism or awareness of neurodiversity. These findings suggest a deficit-as-difference conception of autism wherein neurological conditions may represent equally valid pathways within human diversity. Potential areas of common ground in research and practice regarding autism are discussed.
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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
                SAGE Publications
                1362-3613
                1461-7005
                May 30 2019
                May 30 2019
                : 136236131985344
                Affiliations
                [1 ]University of Sheffield, UK
                [2 ]Chesterfield Royal Hospital NHS Foundation Trust, UK
                Article
                10.1177/1362361319853442
                31144507
                df785424-45a8-4045-8965-f43e1cffa366
                © 2019

                http://journals.sagepub.com/page/policies/text-and-data-mining-license

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