Results are mixed when it comes to disclosing a child’s autism diagnosis to other people. Generally, being transparent about the disorder is considered a good idea. However as a researcher at the University of Alberta (U of A) has found, it doesn’t always point to better inclusion or reduced bullying. Unfortunately, in some instances, the admission can lead to reduced expectations at school and an obstacle to participating in team sports.
“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,” said U of A occupational therapy expert Sandra Thompson-Hodgetts in a recent article.
After interviewing twenty-five parents of twenty-three children diagnosed with autism, Thompson-Hodgetts and her research team discovered that there is no best practice or gold standard when it comes to deciding to disclose the child’s diagnosis. The team advises parents to remain fluid on their decision. They also urge parents to think about context of the situation and realize that the decision to disclose may change over a period of time.
Nancy Popkin, an Autism Resource Specialist with the Autism Society of North Carolina, has a different take on this topic. In a blog from last year she advises to disclose the diagnosis, “If your child will require a level of accommodation, modification, support, service, or just patience and understanding in a certain situation, then telling someone about the diagnosis can help make this happen and smooth things out for all involved.”
If disclosing is the right decision, there are three ways to consider doing so: passive, active and reactive. Passive disclosure involves using autism supports or strategies in the community (visual schedule, sign language, fidgets, etc..) or having the child wear autism gear like an autism t-shirt. Active disclosure is either verbally or in writing informing individuals about the child’s diagnosis. Reactive disclosure is notifying after an unusual or inappropriate situation has occurred.
Although the research out of U of A might seem pessimistic, there’s a silver lining. The team has begun new research that involves observing the behavior of neurotypical children at summer camps where an attendee has a diagnosis of autism which has been disclosed.
“Our preliminary analysis looks really promising and supports our thought that, once kids knew more about autism and had some strategies, they might actually engage with and include that child more,” said Thompson-Hodgetts.
Unfortunately, there does not appear to be a best practice or gold standard answer on disclosure. Parents will have to use their best judgment on each situation as it arises.
References
Yolanda Poffenroth. Telling friends and teachers about a child’s autism has a mixed result, parents say. Medical Express. March 9, 2020.
Nancy Popkin. When Should Parents Disclose Their Child’s Diagnosis? Autism Society of North Carolina. February 6, 2019.
University of Alberta. Telling friends and teachers about a child’s autism has a mixed result, parents say. March 11, 2020
