Illness Communication and Coping Behaviour in Youth With and Without Autism Spectrum Disorder

Abstract

No previous studies have examined how those with Autism Spectrum Disorder (ASD) communicate or cope with symptoms of acute physical illness. Effective management of illness is important as it is related to an individual’s overall health and has implications for the spread of disease. I hypothesized that youth with and without ASD would demonstrate important differences in illness management. In the present study, I investigated parent- and self-perceptions of illness communication and coping behaviour in high-functioning (HF) youth with and without ASD. Participants were 24 youth with HFASD and 24 age-, sex- and IQ-matched controls, aged 9 to 17 years, and one of their parents. Data related to participants’ social communication, daily living skills, illness experience, and illness knowledge were also collected. Parent and self-reports of illness communication and coping behaviour were assessed using vignettes depicting characters with various ailments. Based on parent-reports, typically developing youth communicate illness using direct means (e.g., verbal reports) and utilize active (e.g., intervention-seeking) coping behaviours to manage ailments. In contrast, youth with HFASD were reported to use direct communication less frequently than controls. As such, parents of those with HFASD reported that they rely on observations of their children’s sick behaviour to determine when they are ill more frequently than parents in the control group. Youth in the control group were also reported to use more passive (e.g., emotionality, self-isolation, passive adherence) means of coping when ill with acute physical ailments, when compared to parent reports. Self-reports indicated that youth with HFASD perceived themselves as having significantly more “typical” illness behaviours (e.g., utilization of direct communication and active coping strategies) than their parents reported, whereas youth and parent reports in the control group were more consistent overall. Results of this study will provide important information for parents and practitioners that may subsequently be used to help children with ASD develop strategies for communicating about and coping with illness effectively. A model, emphasizing skill deficits that may prevent youth with HFASD from managing illness effectively, was also developed. Limited insight in the domain of health behaviour may be a particularly important focus for future interventions.