The Journey through Healthcare and Educational Services: Perspectives of Parents of Teens on the Autism Spectrum

Background:

In summer 2018, a community-university partnership between MacART, the McMaster Autism Research Team, and McMaster University developed the Job-Train Program (JTP), a 13 week program providing vocational skills training and a job placement at McMaster with job coaches for 12 autistic students in Hamilton, Ontario, Canada. From varying socioeconomic backgrounds, all participants were credit bearing students in secondary school. To provide background information for the JTP about prevocational training and other supports students had accessed in their communities, interviews were conducted with their parents to document their experiences seeking and using services in the healthcare and educational systems.

Objectives:

To ascertain the extent to which existing publicly-funded healthcare and educational services had met the needs of this group of autistic adolescents.

Methods:

Interviews were based on open-ended questions from an interview guide generated by the research team. Interviews were conducted in family homes or public places that parents selected. Responses were recorded through note-taking during the interviews. Reports were prepared on each family’s experience, using a phenomenological perspective, and common themes were identified among families.

Results:

Ten parents were interviewed. Nine themes emerged from the interviews.

Useful Services Available. Most parents reported having received some helpful services from local healthcare and educational systems.

Difficult Elementary School Years. Most parents reported that their child’s situation had been precarious in elementary school. Difficulties with school services involved accessing educational assistants and assistive technology, communication problems with school personnel, and bullying.

Importance of Confirmed Diagnosis. Parents reported that their child’s situation improved once a diagnosis of autism had been confirmed, facilitating access to services.

Specialized Highschool Classes. At the highschool level, Social Communication Classes offered by the public school board were perceived by parents as highly effective in meeting student needs, although there were a limited number of places available.

Reliance on Private Health Insurance. Many parents, especially those with private health insurance coverage through their employers, reported paying privately for psychoeducational and/or psychological assessments which facilitated their child’s diagnosis and access to services.

Importance of Parent Advocacy and Knowledge. Effective parent advocacy and a high degree of parent knowledge about available resources is crucial to obtaining good outcomes for autistic children and adolescents.

Socioeconomic Status. Higher socio-economic status appears to influence outcomes, since families can afford to pay privately for some services.

Invisible Disability. There is a perception among parents that services are particularly difficult to obtain for “high-functioning” autistic individuals because they have an “invisible disability.”

Importance of Interpersonal Relationships. The quality of inter-personal relationships among parents, teachers and/or healthcare professionals, and the children and adolescents receiving services is also an important factor contributing to the success of these services.

Conclusions:

Preliminary conclusions suggest that programs like the JTP are a positive addition to existing services for adolescents on the autism spectrum. By preparing participants for the transition from highschool to the workplace, the JTP provided a unique form of support for students that would otherwise have not been available through the local healthcare and educational systems.