The Parent – Professional Relationship: Experiences of Parents of Children with ASD

Last spring, some parents in the Winnipeg autism community participated in a study with an interesting question – how did they perceive the fit between the therapy and services offered them, and their family’s needs?

The following is a summary of what the researchers found.

Introduction:

When working with children with autism spectrum disorder (ASD), occupational therapists most often use a family-centred approach where parents are recognized as the experts in their child. This partnership approach requires parent involvement and clinicians’ understanding of parents’ experiences to provide effective care. Thus, understanding the parent-professional relationship is essential to providing family-centred care. However, concerning parents of children with ASD, there is little research available about the parent-professional relationship; therefore, our research purpose was to understand the parents’ of children with ASD-professional relationship.  Four parents of children with ASD in the Winnipeg area volunteered to be interviewed for this study. We interviewed these research participants to gain an in-depth understanding of the facilitators and barriers to the parent-professional relationship.

Summary of Findings:

Our research participants were all mothers between the ages of 33 and 37 years old with one child with ASD, and one sibling. The research findings revealed one overall theme, Alignment: When the Pieces Fit Together, describing the relationship between the family, the professional, and the service all within the larger context of the healthcare, educational, and social service systems.  Research participants described the parent-professional relationship as being impacted by, and inseparable from the alignment between the family, the professional, the services and the system.

Conclusion

Your experiences, as parents of children with ASD, need to be understood to facilitate the dynamic alignment process. Parents need to not only be advocates but also active participants in processes of research and education. Continued invaluable participation in research by parents like you, is imperative to guide decision making within healthcare, educational, and social service systems for children with ASD.

We want to thank our research participants who volunteered their time and shared invaluable personal stories of their experiences. We also want to acknowledge Pam Wener, our independent study advisor, who provided qualitative research training, guidance, support, and valuable feedback during this research process. We also want to thank two of the ASD parent advocacy groups in Manitoba who graciously assisted with participant recruitment.

Andrea Wiebe Carriere & Lori White, University of Manitoba student researchers