Living with autism
May 19th, 2021
by Terrance James
April was Autism Month. I have a grandchild on the autism spectrum and was keen to read Teresa Hedley’s book What’s Not Allowed? A Family Journey with Autism (Wintertickle Press $25.95). All the more so because Teresa is a local writer, autism advocate and former teacher at Cumberland Junior. As an English teacher and later a military spouse, she taught in five countries and two provinces.
Teresa describes the Hedley family’s twenty-year journey with autism. Her second child, Erik, enters the world as “an easy baby. Perhaps a little too easy… he is needy in an exposed way. He has a translucent helplessness…He is a child who needs sheltering.”
When he enters school, she is told that he will always need “scaffolding,” meaning the help of an educational assistant at school. But Teresa’s father is “Erik’s number one believer” and reassures her, saying “Erik will surprise you!”
I read with a sense of anticipation, always curious about what was coming next in the 64 short chapters. There is little that is really predictable with autism. Teresa’s writing is deeply authentic, painful and humorous as she chronicles the family experiences. As Erik grows, so does their experience with the challenges and complexities of the label and syndrome characteristics. I was hooked on the future possibilities.
Marc Garneau, Canada’s Minister of Foreign Affairs and a former astronaut thanked the family “for inviting us to see the world through the complex and intriguing lens of autism.” Retired anchor of CBC’s The National Peter Mansbridge wrote, “there are a lot of lessons on these pages for all of us, and we can benefit from considering them and acting upon them.”
This is a heartfelt story that challenges our compassion and broadens our understanding of inclusiveness.
The setting is distinctly Canadian, and familiar, from Erik’s Cloud Nine experience at a TEDx autism event at York University to walking on the beach in the evening at Kye Bay. Family, friends and professionals are candidly portrayed. The story is educational, inspirational and enjoyable.
What’s Not Allowed? is available online at Amazon and Chapters-Indigo, in-store at Chapters-Indigo throughout Canada and at select independent bookstores. 9781989664018
Terrance James, PhD is a rehabilitation consultant and the past president of the Comox Valley Writers Society.