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Parental Narratives of Autism Diagnosis Reflecting Experiences During the Years 2000 to 2016

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posted on 2025-02-04, 09:28 authored by Janet M. Machalski

This research is informed by my insider perspective. My intentions are to maximise parental voice and consider the change in autism classification in 2013. The study involves analysis of parental narratives concerning their child’s experience of autism before, during, and after autism diagnosis. There were two groups of parents. After advertising for participants and purposeful sampling a group of ten was formed. One group had children who received an autism diagnosis at least 10 years previously and the other had children who received an autism diagnosis up to three years ago. Narratives were formed from recordings of unstructured interviews. A combined analysis of four qualitative methods was used to maximise the findings within the study. Thus, it was possible to investigate changes in these parents’ experience of autism diagnosis in their child over a period of approximately 16 years. Findings suggest that knowledge of autism improved in the community during this period. Support was also suggested to have improved in schools, as did the length of delay in gaining an autism diagnosis. Further insights that emerged included possible measures to manage camouflage and greater understanding of mental health issues associated with autism in their children. The importance of this study is recognition that knowledge of autism must be maintained in the community to ensure appropriate support is given. It suggests the importance of providing a bank of individual, varied stories to assist parents and young adults to understand experiences of autism in their child over time to maximise appropriate support. Additionally, the study provides findings relevant to those within the autism community that may assist policy makers, teachers, parents, and health workers as they plan future support for autistic young people.

History

Supervisor(s)

C. Lawrence; P. Wood

Date of award

2024-12-07

Author affiliation

Bishop Grosseteste University

Awarding institution

University of Leicester

Qualification level

  • Doctoral

Qualification name

  • PhD

Language

en

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