Exploring the lived experiences of Autism Spectrum Conditions

When individuals are diagnosed with Autism Spectrum Conditions (ASC), the whole family is affected. Recently, qualitative research has investigated the experiences of siblings of autistic people. A literature review was undertaken to identify and evaluate the research investigating siblings' ex...

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Bibliographic Details
Main Author: Leedham, Alexandra T.
Other Authors: Freeth, Megan ; Thompson, Andrew ; Smith, Richard
Published: University of Sheffield 2018
Subjects:
150
Online Access:https://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.766555
Description
Summary:When individuals are diagnosed with Autism Spectrum Conditions (ASC), the whole family is affected. Recently, qualitative research has investigated the experiences of siblings of autistic people. A literature review was undertaken to identify and evaluate the research investigating siblings' experiences. Six databases were searched, resulting in seventeen studies meeting criteria for the review. Data was analysed using Thematic Synthesis. Results described the roles and responsibilities participants undertook which were different to those normally expected by siblings. Themes also explored the impact of their siblings' behaviours, experiences of acceptance and empathy and interpersonal relationships. Participants expressed love for their siblings. But, several factors, including their siblings' diagnosis of ASC affected participants' mental health. Results found participants wellbeing was improved if they had control over how they supported their siblings, understood more about ASC, had alone time with parents and had the opportunities to meet with other siblings of autistic people. A research project was conducted. ASC diagnoses often occur later for females than for males. So, many females' needs are not understood until later life. Research investigating the lived experiences of autistic females is limited. The study aimed to investigate the experiences of females diagnosed with ASC at forty years old or over. Data was gathered and analysed using Interpretative Phenomenological Analysis. Eleven females were interviewed. Results revealed that ASC was misunderstood by professionals and many participants used strategies to try to 'fit in' with peers. The consequences of this included poor mental health. Participants described experiences of grief and adaptation to diagnosis. This was affected both positively and negatively by other people and many participants experienced positive changes to their identities and psychological wellbeing after diagnosis. Services require training to understand ASC in females to prevent it being under recognised.