Carers of a young person with Autism Spectrum Disorder and Psychosis: caregiving experiences and perceptions of service provision

Abstract

Background: This research will explore the experiences of familial caregivers caring for a young person with a diagnosis of autism spectrum disorder and psychosis or subclinical psychotic experiences. Psychosis is a mental health disorder defined as a loss of touch with reality, characterized by a specific set of negative and positive symptoms. Subclinical psychotic symptoms, as defined by Yung and Lim (2016), generally refer to sub-threshold forms of hallucinations and delusions, viewing psychotic experiences along an extended psychosis phenotype. This distinction is defined because it can be extremely difficult to discern between psychotic symptoms, and autistic features that are seemingly psychotic. Regardless of whether an individual has a diagnosis of definite psychosis, or subclinical psychotic experiences, these symptoms have a dramatic impact on the individual's daily occupations, and the occupations of those who care for them. Process: A literature review will examine the current knowledge base surrounding young people with a primary diagnosis of autism, and a co-occurring psychosis or psychotic disorder. The review will discuss the prevalence and presentation of psychosis in youth with autism. Additionally, it will discuss the current insight into the experience of caring for a youth with the aforementioned conditions. The findings of the literature review will be used to inform the research proposal. Method: An interpretative phenomenological analysis is proposed to gain insight into the experience of familial caregivers caring for a young person with autism and a subsequent psychosis. The study will recruit 5 participants. The impact on familial carer's ability to participate in meaningful occupations will be explored. Additionally, carer's perceptions of service provision will be obtained, to generate a "bigger picture" of the caregiving experience. A semi-structured interview delivered by the researcher will be used to generate data.