How are children and young people (CYP) with an autism spectrum diagnosis supported to understand autism and their diagnosis?

Prentice, Julie Susan (2022). How are children and young people (CYP) with an autism spectrum diagnosis supported to understand autism and their diagnosis? University of Birmingham. Ph.D.

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Abstract

Literature suggests that an autism diagnosis can have positive and negative psychological ramifications, which range from improvements in self-esteem (Jones, 2001) through to significant negative impacts on mental health (MacLeod and Johnston, 2007). This study aimed to understand the impact of an autism diagnosis for children and young people (CYP), through the perspectives of those most closely involved, to identify factors most likely to influence positive outcomes. This thesis presents two key strands related to this aim, a systematic exploration of the literature and a mixed-methods research study.

A systematic review was undertaken following the preferred reporting items of systematic reviews and meta-analyses (PRISMA) protocol (Moher et al., 2009). The number of papers meeting the search criteria for each of the key stakeholders were: CYP with an autism diagnosis (n = 11); parents of children with an autism diagnosis (n = 7); professionals involved in diagnosis and post diagnostic support (n = 11). Findings were synthesised using thematic analyses. A common theme identified across the papers was the impact of autism diagnosis on CYP’s self-identity, which was especially influenced by their social experiences and the communication they heard about autism. Parents were identified to be more likely to support children’s understanding of the diagnosis than professionals and the importance of a strengths-based approach was highlighted.

For strand two, a mixed-methods approach was utilised to enable CYP’s experiences of learning about their autism diagnosis to be understood, and to explore the conversations and interactions that parents and professionals had with them. Views of the three key stakeholders were collected through online surveys and interviews. Twelve CYP with an autism diagnosis participated (survey n=11; interview n=1); thirty-six parents (survey n=30; interview n=6); fourteen professionals (survey n=9; interview n=5). Participants provided rich accounts related to young people’s experiences. Although there was variation in the views shared, most CYP with autism, and parents of CYP with autism, identified that post-diagnostic experiences were more positive than experiences before the diagnosis. Furthermore, knowing about the diagnosis appeared to be a resilience boosting experience for some young people, as the new knowledge about their diagnosis enabled them to make connections with strategies suggested by others, or with strategies they identified for themselves. Parents’ and professionals’ views about disclosure were aligned, suggesting that discussion of diagnosis should be developmentally tailored for the individual, it should focus on strengths related to autism, which are contextualised to the individual’s experiences. Positive role models with autism were also highlighted to support positive perceptions. The findings highlight that, in addition to learning about autism through the positive conversations about the diagnosis, processing and coming to understand what an autism diagnosis means for the CYP is a process that takes time, which is best supported by ensuring that the social contexts that CYP experience, at the point of diagnosis and beyond it, reflect a positive understanding of the differences that are experienced in relation to autism.

Type of Work:

Thesis (Doctorates > Ph.D.)

Award Type:

Doctorates > Ph.D.

Supervisor(s):