“It’s Not a User-Friendly System”: Mothers Realities of Raising Children with ASD

Background: Mothers raising children with Autism Spectrum Disorder (ASD) experience vast challenges when navigating the diagnostic process, medical system, funding programs, all while managing their own self-care needs.

Objectives: Through the theoretical orientation of phenomenology, this study sought to understand the lived experiences of mothers raising children with ASD, including diagnosis, symptoms, struggles, lessons learned, and advice for others.

Methods: Eleven biological mothers from the Region of Waterloo were interviewed for this research and many themes emerged, ranging from the diagnostic process, school experiences, therapies, and coping mechanisms.

Results: For the purpose of this presentation, the theme called “We fall in a gap” will be discussed, which includes the following subthemes: funding, programming, and mental health. Mothers discussed the availability of resources for families raising children with ASD, but many were not suitable for their children due to the spectrum nature of the disorder. For instance, programs may be tailored for boys, so mothers of girls do not feel welcome; or funding is available for those who require assistive devices, but not for all forms of therapy. In this way, mothers felt their needs were not being met adequately within the Region of Waterloo.

Conclusions: Several suggestions will be discussed for parents, program coordinators, health professionals, and policy makers in order to better meet family’s needs.