Understanding disability in healthcare: exploring the perceptions of parents of young people with autism spectrum disorder

Abstract

Purpose: How autism spectrum disorder (ASD) is understood (i.e., as a medical problem or natural human variation) has profound implications for how healthcare services are designed and delivered. As the recipients of these services, children and families are highly invested in these debates, yet little research has sought to investigate their views. The purpose of this study was to explore parents’ conceptualizations of ASD in relation to disability, and how they align with, or diverge from, conceptualizations they encounter within healthcare.

Materials and methods: Nine semi-structured qualitative interviews were conducted with parents of children with ASD and thematically analyzed.

Results: The accounts suggested that participants integrated multiple and sometimes contradictory conceptualizations of disability that reflected both “medical” and “social” models and sources of disablement. While the participants often advocated for acceptance and inclusion of their child, the label of “neurodiversity” was commonly rejected due to the concern for potential loss of funding for services.

Conclusions: Study findings highlight the relationship between how parents conceptualize ASD and their experiences accessing supportive services within current delivery structures. Implications for ASD service providers emphasize accommodating parents’ unique and evolving values and priorities for healthcare and their relation to current service systems.

Implications for Rehabilitation

• Parents conceptualizations of ASD both inform and are influenced by their experiences of accessing supportive services.

• This study highlights that parents’ perspectives are fluid, context-dependent, and do not exclusively represent a single model or perspective of disability.

• To meet family needs, service providers including healthcare professionals must recognize parents’ unique understandings of their child’s ASD and appreciate how healthcare shapes these perceptions.

Keywords:

• Autism Spectrum Disorder (ASD)
• disability
• healthcare
• parents
• neurodiversity

Acknowledgements

This research was completed in partial fulfillment of the requirements for an MScPT degree at the University of Toronto. The authors would like to thank all of the participants for their time and sharing their insights. Additionally, we would like to acknowledge Mehreen Zaman, Kelly O’Brien, Nancy Salbach, Stephanie Nixon and Esther Waugh for their assistance throughout this research study.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Notes

1 In the paper we use the terms 'high-' and 'low-functioning' that are commonly invoked in different ASD communities. This distinction is often made in accordance with population-based IQ norms [12] where an individual with a normal or above-normal IQ is said to have 'high-functioning' autism. Our use of these terms in the paper is, however, reflective of the more colloquial usage of our study participants in reference to children’s behaviours (i.e., self-injuries, meltdowns) and ability to function in society (i.e., conversing with others, making safe decisions).