Experiences, Meaning-Making and Expertise: Parents, Professionals and the Diagnostic Process of Autism Spectrum Disorder

Primary Investigator: PhD Candidate Sivan Gal-Rosberg, MSsc (CESAR, Uppsala University).

Project description: In the last decades, an increasing number of children have been diagnosed with Autism Spectrum Disorder (ASD), both in Sweden and internationally. In Sweden, the diagnostic process of ASD in children is stretched over several months and involves many different actors. Although professionals conduct and establish ASD diagnoses, parents play a crucial role in the diagnostic process. Parents are also central in planning and implementing interventions and educational programs that their children gain access to after a diagnosis has been established. 

Throughout the diagnostic process of ASD, and especially within the assessment procedure, parents are expected to interact and contribute while at the same time, they are being thrown into a distressful situation. As parents, they are concerned about their child's development and well-being, so they often engage in continuous negotiation and re-negotiation with professionals. 

Research has shown epistemic gaps between parents and professionals concerning children diagnosed with disabilities or special needs. Fragmented communication or miscommunication in the diagnostic process between these two actors (i.e., the parents of the child being diagnosed and the professionals responsible for the diagnosis) is not uncommon since they often have different epistemological and ontological stands as far as child development is concerned.

Against this backdrop, this dissertation project aims to examine the diagnostic process of ASD in young children (under ten years old) from parental and professional perspectives. The project will focus on parents' experiences of the diagnostic process and their meaning-making of assessment procedures, assessment tools, and relationships with different professional actors. It will also examine professionals' perspectives on ASD diagnostic process. The data collected in this project stems from interviews with parents of young children who had gone through the diagnostic process of ASD within the last year and with psychologists who lead ASD diagnostic assessments.

Advisors to the dissertation: Prof. Stefan Sjöström & Dr Kristina Engwall (both at CESAR, Uppsala University).

Last modified: 2022-03-22