Being a parent can be stressful at the best of times. Add in the extra demands created by the neuro-developmental disorder autism, and the stress levels facing a parent can be overwhelming.
Now, with one in 68 children being diagnosed as autistic, UBC is studying the profound effects of the disorder on families.
Dr. Pat Mirenda is leading the study, which is using data collected over the past 10 years, from 400 families.
“Parents of kids with autism, when you compare them to parents of kids with other developmental disabilities, like down syndrome or other chronic health impairments, like cystic fibrosis, or parents of typically developing kids, are way more stressed,” says Mirenda, who heads the university’s Autism and Developmental Disabilities Program.
Simple everyday activities like going to the grocery store can lead to extreme trauma and meltdowns for a child with autism. So can visiting a restaurant or a playground.
Six year old Damon James recently underwent a general anesthetic at BC Children’s Hospital just so he could have a regular dental check up. A common necessity for kids like him, as the disorder often comes with extreme sensitivities to lights and sounds.
His mother, Patricia James, says in her family, “autism causes a huge amount of stress. You just never know what you’re going to get.”
Staff at BC Children’s Hospital try to help families by building trust with the child and taking them through the process one step at a time. At Vancouver International Airport they’ve teamed up with The Canucks Autism Network to assist kids and families hoping to fly.
They host tours at the airport, allowing kids to practice checking in, going through security and boarding an aircraft. Even the sounds of engines are played, in an effort to familiarize everyone with the surroundings.
Still, Mirenda says much more can and should be done to help families managing the disorder. She’s hopeful at least some relief will come from The Pacific Autism Family Centre, due to open within the year in Richmond.
“There need to be resources to teach parents better coping skills, mindfulness training for example or cognitive behaviour therapy. There need to be resources so that parents who are experiencing marital distress can get counselling,” she says.