Summer camps aren’t fun and games for everyone

Exploring how hidden disabilities, like autism, impact inclusion and bullying

Children with autism are at a high risk of being left out and bullied by their peers, according to Sandra Thompson-Hodgetts, who says it is still unclear if educating friends and classmates about a child’s autism improves inclusion and bullying.

Kids with autism take part in fewer community programs—like day camps—than their peers, even when compared to children with other disabilities.

“We think strategies like preventative disclosure may improve how much peers interact with and include a child with autism, but we’re still not sure,” says Thompson-Hodgetts, who received a WCHRI Innovation grant to dive deeper into this topic.

Through this strategy, Thompson-Hodgetts will observe behaviours of children attending a summer camp after one of the attendees shares their autism diagnosis as well as some strategies for engaging with someone with autism. Her team will also observe children with autism who choose not to disclose their diagnosis. 

“Our preliminary analysis looks really promising and supports our thought that once kids knew more about autism and had some strategies that they might actually engage with and include that child more,” says Thompson-Hodgetts.

This project builds on the work of a previously funded WCHRI Innovation project that explored disclosing a child’s autism diagnosis to others.

The idea came after the parents of two sons with autism that she worked with chose to disclose the older son’s diagnosis to peers, educators, health care professionals and community members. Unfortunately, they felt the admission led to their son not being challenged at school any longer; he was also prevented from continuing to play on the soccer team.

Based on this experience, they decided not to disclose their younger son’s autism diagnosis, but still grappled with whether they were making the right decision.  

“I went to the literature, and there was nothing that evaluated outcomes of disclosure in real life contexts,” says Thompson-Hodgetts. “We initially assumed that sharing a diagnosis would be beneficial, but we learned that’s not necessarily the case.”

Her results showed that there is no right or wrong answer when it comes to disclosure—it’s a deeply personal decision that is complex and ongoing.

“Decisions to disclose were often based on expectations of understanding and support, which sometimes were fulfilled, and often weren't, resulting in selective disclosure,” she says.

Despite there being no clear cut answer, Thompson-Hodgetts developed presentations for autism self-advocacy groups and parent groups, to inform—and reassure—families that disclosure is a personal decision that may change over time based on context, as well as their children’s input as they get older.

With an estimated one in 66 Canadian children and youth having an autism diagnosis, she says there are many families that struggle with this issue of disclosure.

“It’s a tough choice for parents,” says Thompson-Hodgetts. “If they do choose to disclose the autism diagnosis, they need to also decide who to tell, as well as when, how and why.”

Thompson-Hodgetts is an associate professor in the Faculty of Rehabilitation MedicineThese projects have been funded by the Stollery Children’s Hospital Foundation through the Women and Children’s Health Research Institute.

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