MA Special Education Thesis Defence, “ An Inquiry into Services for Parents of Children with Autism Spectrum Disorder Between Diagnosis and Service Assembly”
By: Kaitlyn Born Supervisor: Dr. David Carter
Second Reader: Dr. Ken Pudlas
External Examiner: Dr. Ted Wormeli, Provincial Outreach Program for Autism and Related Disorders
Exam Chair: Dr. Barb Astle
In 2015, one in every 84 children was diagnosed with Autism Spectrum Disorder (ASD) within British Columbia (Government of British Columbia, 2016).This neurodevelopmental disorder has an increasing prevalence in children as diagnostic tools become more refined and children are diagnosed at younger ages.
As more parents find themselves parenting a child with ASD, they learn to cope with the challenges that come with this diagnosis.
Parents of children with ASD experience greater stress than parents of typically developing children, and more stress than parents of children with other disabilities (Kasari & Sigman 1997; Bromley, Hare, Davison & Emerson, 2004; Martins, 2007; Hastings, 2002; Dabrowski
& Pisula, 2010). As parents learn to cope with the challenges that come with parenting a child with ASD, they try their best to find resources and information for their child and family. It is hypothesized that many parents in the lower mainland of British Columbia are educating themselves using books, media, the internet, and word-of- mouth resources instead of learning from their healthcare professionals. It is also hypothesized that parents are not aware of the resources that are available to them after receiving a diagnosis, and are therefore seeking help for their child and assembling services in much the same way they self-educated themselves.
If parents are not educated about empirically supported services and treatments, it is difficult for them to help their child in the best possible way and they can fall victim to false information and poor treatment. To discover whether an educational and information gap exists, eight families were interviewed about the time interval between receiving an autism diagnosis and achieving a satisfactory service assembly for their child. It was observed that families varied greatly in emotional response when receiving an Autism Spectrum Diagnosis, and although all participant families received a folder of information on services and “next steps” from their physician, few actually used the information provided to achieve a service assembly.
The implications of this qualitative research revealed that families experience strain on their relationships, and parents desired a resource to guide, support, and educate them throughout their “autism journey”.