Assessing Illness Communication and Behaviour In Youths with and without Autism Spectrum Disorders

Background:  To date, no research has investigated how children and adolescents with Autism Spectrum Disorders (ASD) communicate and cope when sick with physical illnesses.  Given that people with ASD often communicate and cope with situations differently than typical individuals, youths with ASD may have different ways of expressing symptoms of illness and distinct coping strategies compared to typical youth. In addition, results from previous studies of pain in ASD (e.g., Tordjman et al., 2009) have suggested that youths with ASD express and communicate pain differently than those without the disorder. 

Objectives:  We are currently examining how youths (8 to 17 years of age) with ASD express and communicate symptoms of illness, as well as how they behave and cope when sick, compared to typically developing controls.

Methods:  In order to assess youth’s illness communication and behaviour, we developed a series of short vignettes that describe characters with a variety of medical conditions. The ailments in the vignettes consist of different illnesses (e.g., cold, kidney infection), symptoms of illness (e.g., rash, fever) as well as various injuries (e.g., scrape, concussion). The ailments are balanced in terms of severity and frequency, which were determined by physician consensus during measure development. Participants are presented with each vignette and asked to answer a number of closed- and open-ended questions to assess illness communication and behaviour for each ailment. A series of close-ended questions are also included to assess the likelihood that the youth would engage in a set of specific coping behaviours for illnesses, ranging in severity. Parents are also presented with the same vignettes and asked to report on their child’s illness communication and behaviour. 

Results: (anticipated, and progress to date) After the vignettes were created, pilot testing was completed with a number of typical youths and parents to ensure feasibility and address any limitations. The illness vignettes are part of a larger study investigating illness knowledge, communication, and behaviour in youths with ASD.  Data collection is ongoing (N = 20 typically developing participants and N = 4 ASD participants; target sample size = 35 per group). We anticipate that youths with ASD, and their parents, will report fewer attempts to communicate the specific ailments to others, compared to typical controls and their parents. We also expect those with ASD, and their parents, to report less social forms of illness behaviour (e.g., seeking comfort) and more independent forms of coping (e.g., spending time alone) compared to the typically developing group. In addition, we expect that those with ASD, and their parents, will report more atypical forms of illness behaviour (e.g., getting angry, becoming frustrated) than those without ASD will report.

Conclusions:  We anticipate that the findings of this research will demonstrate important differences in the way youths with ASD communicate and cope with illness. 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 and coping with illness effectively.