Kate James’ son was escorted from the Vancouver Aquarium after he fell to the ground and started screaming.
It was one of the 11-year-old boy’s worst public outbursts. Diagnosed with autism, his physical aggression started around the age of four, when he would push people away, throw food and frantically kick. But as the five-foot-three, 185-pound child continues growing, his physical aggression is becoming more difficult to control.
“My son outweighs me, but I’m the one who deals with this,” James said. “The triggers change of course from day to day, so we never know what could happen.”
Most children with autism don’t show aggression, but a pilot study from the University of Alberta has unveiled the impact this behaviour has on families of autistic children. Researchers talked to 15 families coping with children with varying levels of autism, and the small study revealed a big problem — nine families said their child’s aggression prevented them from accessing supports and services.
Sandy Hodgetts, lead author of the study and Assistant Professor of Occupational Therapy in the Faculty of Rehabilitation Medicine said many parents involved in the study felt judged in public because of their child’s behaviour which included hitting, punching, biting and breaking household items.
“The reason this stood out to us is (because) we never ask them about aggression, we never use the word aggression in our questions,” Hodgetts said. “Autism and aggression aren’t synonymous, so it’s not the first thing people think of when they’re studying. You look at communication, you look at some sort of impediment behaviour.”
The study was published in the journal Focus on Autism and Other Developmental Disabilities, and the research is part of a larger study of 300 parents and professionals, and how they access supports and services.
Many professionals trained to work with autistic children aren’t prepared to deal with aggression. It’s a recognized gap in the system, Hodgetts said.
James experienced this firsthand last summer when her son’s behavioural specialist arrived at their home to find the boy kicking and screaming. She barely made it through the front door before suggesting another time for the boy’s session, James said.
“That’s her job, to deal with the behaviours, and she walked away. It has gotten worse and it has impacted my family.”
Her son’s aggression is unpredictable. He has kicked holes through walls, broken TVs, dented the dishwasher and left his mother with bruises she’s had to explain to her boss. It impacts the time spent with her other children, who don’t have autism. James’ son has a quiet room at school for when he becomes too aggressive to focus.
“He will start kicking and screaming and then he will go in there himself or he will be escorted in there,” she said. “He will kick the wall so hard that on the other side of that wall he can open doors and cabinets will just swing open.”
The study opens discussion into the stigma surrounding autism and it’s varying symptoms, Hodgetts said. Greater understanding of aggression could help de-stigmatize autism and assist families dealing with social isolation and a lack of respite care and professional support.
“For those people who do display aggression, it’s not usually malicious,” Hodgetts said. “We don’t know why, maybe frustration communicating, but we don’t know.
“We’re learning lots and we still don’t know a lot about autism.”
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