Living without Adequate Community Mental Health Support: The Experiences of Parents of Post-Secondary Students with Autism and Co-Occuring Mental Health Challenges

Background: Young adulthood marks an especially demanding transitional period for young adults with Autism Spectrum Disorder (ASD) pursuing post-secondary education, and their families. Young adults with ASD experience higher rates of co-occuring mental health challenges compared to others with or without developmental disorders. In addition, policies typically mandate individuals with ASD to make the transition from child to adult health services at age 18, involving a disruption of daily routines and contact with familiar health care providers. Studies show that adult-based community mental health agencies are not typically inclusive of individuals with ASD. It is imperative to gain a better understanding of the experiences of young adults with ASD and co-occuring mental health challenges that may or may not be mental health service users to delineate the characteristics and effectiveness of mental health care delivery systems versus other kinds of informal mental health supports.

Objectives: To conduct a qualitative inquiry of parental perspectives on the experiences of post-secondary students with ASD and co-occuring mental health challenges while accessing or trying to access mental health services and/or informal mental health supports in one Canadian province.

Methods: The experimental methodology involves conducting semi-structured interviews with parents or legal guardians of young adults (age 18 to 30 years, currently enrolled in post-secondary education) with ASD and co-occuring mental health challenges. Data collected through interviews include feedback on formal or informal diagnoses of ASD and mental health challenges, including psychiatric disorders, and experiences during assessments and while accessing or trying to access support for mental health needs in relation to perceived attainment of post-secondary academic success.

Results: Results show that young adults with ASD and co-occuring mental health challenges experienced barriers while accessing or trying to access support for mental health needs. The majority of parents/legal guardians identified unsuccessful attempts to access mental health supports for their children. The most common barrier to accessing mental health supports was found to be restrictive intake criteria. The most common barrier to receiving effective mental health supports was found to be lack of perceived clinicial confidence to care for the population of young adults with ASD and co-occuring mental health challenges.

Conclusions: Knowledge disseminated from this study contributes a qualitative inquiry on the characteristics and effectiveness of mental health care delivery systems versus other kinds of informal mental health supports. The study findings support the view that young adults with ASD and co-occuring mental health challenges are a population for whom optimal supports may not currently be accessible, and they highlight the need for a broader environmental scan of supports that can further inform critical gaps in funding and policies.