How Should We Talk about Obesity and Weight-Related Topics with Children with Autism Spectrum Disorders and Their Families?

Background: Obesity is a global health concern and can significantly impact the physical and psycho-social health of children. Children with Autism Spectrum Disorder (ASD) appear to be at a higher risk of having obesity than their typically developing peers. Although it has been recommended that health care providers (HCPs) speak to families about the potential health risks of unhealthy weight in ASD, no previous research has explored exactly how HCPs communicate with children with ASD and their families about this topic.

Objectives: To explore the experiences of children with ASD, their families and HCPs when discussing weight-related topics in healthcare consultations.

Methods: Individual, in-depth qualitative interviews were conducted with children with ASD aged 10-18 years with verbal fluency who were attending a tertiary psycho-pharmacology clinic and whose Body Mass Index was greater than the 85th percentile. Their parents were also invited to take part in a separate interview, as were all HCPs who worked in the clinic. Thematic analysis using an interpretive phenomenological approach was used to analyze the verbatim transcripts. Themes were analyzed and discussed by the whole team comprising multi-disciplinary HCPs, researchers and a parent of two children with ASD.

Results: Eight children with ASD, eight parents, and five HCPs were interviewed. Three main themes were identified: 1) Layers of complexity: Weight and health issues were complicated by a combination of medication side-effects, social dynamics within the home, and overall quality of life considerations. Narratives of ‘the lazy child’ and ‘non-compliant parent’ were strongly rejected; 2) Uncertainties of communication: Clinicians were often hesitant to start weight-related conversations when families came to see them for other issues. Others worried what impact such a discussion would have on the therapeutic relationship with the families. Parents wanted HCPs to raise the topic early, but were frustrated when realistic solutions were not offered; 3) Wellness over weight: Parents, children and HCPs all identified a need to move from predominantly focusing on a child’s weight, and instead promoting overall wellness throughout the life course. Overall recommendations included: Acknowledging the complexity of the situation; Engaging child in the discussion where possible; Using clear visuals and examples; Establishing a trusting relationship with the family; Using a strengths-based approach.

Conclusions: Children, caregivers and HCPs all recognized the potential short and long-term health risks of overweight/obesity, and identified a need to work collaboratively to positively impact the health status of children. Tools are needed to help HCPs foster positive conversations about weight-related topics and lifelong wellness.