“Our ASD Journeys” event reminds families of children and youth with autism they are not alone

If you’re a parent or caregiver, you can understand how easy it is to fall into the isolating grind of pandemic parenting — once dinner is done, homework is done and the kids are bathed and tucked in, it’s time for you to rest and recharge for another day. When every day feels the same, it can be hard to remember to ask for help or unite over shared experiences with other parents.

In an effort to support parents and caregivers in the autism community and remind them that they are not alone during this time, CHEO’s Autism Family Advisory Committee (AFAC) recently hosted “Our ASD Journeys” —  a virtual community building event attended by over 30 parents and caregivers of children with autism spectrum disorder (ASD).

“This is the fourth year the AFAC has hosted the event for families, and my first time participating as a member. I really feel it was so much more important this year because of how isolating pandemic parenting has been for all families,” said CHEO AFAC member, Lesley Robertson. “Events like these are so important for parents of children with autism because it’s so easy to forget that you’re not alone, especially when you’re dealing with a new diagnosis and you just don’t know how to navigate the system.”

Lesley’s son Mason (now 11) was diagnosed with autism after they noticed he wasn’t hitting some important speech milestones. Although they were pretty sure autism was at the root of Mason’s delays, the diagnosis didn’t come as any less of a shock.

“I cried all the way home,” Lesley confided to the Zoom group during the meeting, which included many parents facing a new diagnosis of autism. “In fact, we won the lottery because of how special our son is. But you know what, it’s ok to have your time. It’s ok to not be ok.”

As a member of CHEO’s Autism Family Advisory Committee, Lesley is one of 11 family advisors who have a child with a diagnosis of Autism. The AFAC partners with CHEO to provide advice and guidance from a patient and family perspective to CHEO’s administration, staff and physicians, and advise on changes that can improve the quality of care and services, and give voice to patient and family perspectives on hospital initiatives.

During the event, a number of other caregivers shared their stories from autism diagnosis through to the teen years, offering unique perspectives.

19-year-old Jaden Bryk was diagnosed with autism when she was in preschool. She shared her experiences as a teen living with autism spectrum disorder and shared her tips on how to make friends.

“It’s hard when you’re different. I remember when I would get so frustrated because no one could understand me,” Jaden said. “I’m lucky I have supportive friends and family. If anyone ever wants to be friends, they can always reach out to me.”

During the wrap-up Q&A session of the event, participants had the chance to ask speakers to share their advice, coping tips and point to helpful resources they have discovered during their journey.

"This was such a lovely event, I was so glad I could attend,” said Sandra, one of the event participants.  

A second “Our ASD Journeys” event will be held for French-speaking families on March 3, 2021 at 6:00 p.m. Jaden’s brother, who also has ASD, will share his experiences alongside other french-speaking members of the AFAC.

Learn more about CHEO's AFAC