Parent involvement in the assessment and diagnosis of autism

Deborah Saunders

doi:10.32920/ryerson.14658219

Abstract

Currently, parents of children with autism are dissatisfied with their experience of the assessment and diagnostic process. This study examined the experiences of parents and families surrounding the assessment and diagnosis of their child. It also explored ways of how parents would like to be involved in the assessment process. A feminist approach governs this investigation, and thematic analysis methodology is used to analyze participants' responses. Semi-structured interviews were conducted with four mothers. The sample was drawn from three different oranizations serving children with autism. Six categories emerged and were compiled into three broad themes: (1) delays in obtaining a diagnosis, (2) involvement in the process, and (3) recommendations and support. The implications of this study suggest that parents would like to be more involved and more informed throughout the process of assessment and diagnosis.

Highlights

A Major Research Paper Presented to Ryerson University in partial fulfillment for the degree of Master of Arts in the Program of Early Childhood Studies
I authorize Ryerson University to lend this paper to other institutions for the purpose of scholarly research only with the acknowledgement of my name
A diagnosis of autism leads to a label and a label permits access to treatment

Summary

Research questions

This qualitative study aims to examine the experience of parents and families, surrounding the assessment and diagnosis of their child. A small sample was obtained from three different organizations serving children with autism, within a large metropolitan area in Ontario. Parents' experiences were gained through semi-structured interviews, and interpretations of the interviews were made from the perspective of the researcher. The following questions were the focus of this investigation:. (1) What are parents' and families' experience of the assessment and diagnostic process?. (2) How do parents and families want to be involved in the assessment and diagnosis of their child?

Theoretical frameworks This study is governed by a feminist approach to research

Recruitment

Procedures

Knowledge about autism

Findings

What changes would you like to see in the assessment process?