Listening to the voices of autistic people: their experiences of co-creating research and receiving care within mental health inpatient admissions

Abstract

The first chapter of this thesis is a systematic review exploring the experiences of individuals who have been involved in participatory autism research. Eight studies were identified following systematic review of existing literature. Using a thematic synthesis approach, three analytical themes were identified: “All Research has an Agenda”, “Supporting Challenges, Encouraging Strengths”, and “The Many Faces of Participatory Research”. Results demonstrate the benefits of undertaking participatory research in the field of autism studies, as well as the individual and systemic factors that facilitate or hinder this process. Implications include the need for re-evaluation of funding priorities and increasing accessibility, and the need for further research into creative ways to ensure community member’ voices are heard in the research development process.
The second chapter is an empirical study using Interpretative Phenomenological Analysis to explore the experiences of autistic women who have had mental health inpatient admissions. Eight autistic women took part in semi-structured interviews, and analysis lead to the identification of five Group Experiential Themes: “The Nature of the Ward is Incongruent With What it Means to be Autistic”, “The Ward was Lifesaving, but not Therapeutic”, “Battling Against a Powerful and “Infallible” System”, “Disconnection in Understanding and Being Understood”, and “Re-Traumatisation and the Perpetuation of Vulnerability”. Findings highlight the iatrogenic harm participants experienced in hospital through a number of different process. Clinical implications are reported to increase the therapeutic benefit of inpatient wards and improve admissions for autistic women.

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ORCID for Chloe Laura Charnick: orcid.org/0009-0008-3076-7612

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