By Sean O’Malley
Like most parents who have a child with autism, Doug McCreary has a well-honed routine for taking his youngest son Matthew to hospital.
For starters, it’s a two-person job. Every minute in a hospital setting increases the chances that Matthew will become agitated, so Doug’s wife goes to emergency to start the admission process, while Doug and Matthew drive around the neighbourhood until they get the word that the first clinician is ready to see them.
But in the world of autism, even those best laid plans can go awry. McCreary, who lives near Orangeville, recalls one ER visit when Matthew had a seizure (he also has epilepsy) on his first day of school and fell on his face. Because of the seizure, Matthew was in restraints during the ambulance ride to hospital. His mother told the ER staff that because Matthew also had autism, it would be better to keep the restraints on when he woke up because he would be disoriented from the seizure and upset by the chaotic environment of the ER. Her concern was that Matthew would immediately get up and try to run out of the hospital.
Which is exactly what happened.
“They didn’t listen to her,” says McCreary. “They undid the restraints and he left. We were totally stymied. They were calling security, I guess tasers would have been the next step. Matthew was flopped out on the floor by the elevators refusing to move. The staff was useless, they didn’t de-escalate the situation at all.”
Part of the challenge when it comes to taking people with autism to hospital is how often it happens. According to a study led by CAMH Clinician-Scientist Dr. Yona Lunsky that was just published in the BMJOpen, almost one in four people with autism (22 per cent) go to a hospital ER for physical or psychiatric emergencies every single year.
The study suggests that the rate of emergency department admission for people with autism could be brought down if there were better community supports for people with autism and better training of emergency department staff to deal with the complex challenges people with autism present.
For McCreary, one of the keys to preventing an ER visit from spiraling out of control is for hospital staff to be flexible, and above all else, to listen.
“Listen to the caregiver,” he says. “Let them explain how the emergency room people can best support the individual with autism. Pay attention to what they are telling you because they can help de-escalate the situation.”
Ultimately that is how the ER staff were able to calm Mathew down and get him the treatment he needed.
“An experienced paramedic approached us and said ‘What do we need to do mum and dad? You tell us. Everyone else just be quiet for a minute.’”
McCreary recalls another ER visit when Matthew had a suspected broken wrist. Problem was, Matthew was laying on the floor and refused to get up. So instead of trying to force Matthew to get on the gurney, the doctor undid the velcro straps and put the mattress on the floor for Matthew to lie on. The doctor then put the pillow on the floor to kneel on and told the nurse “We’re working down here.”
“The best doctors deal with the situation as it presents itself and do whatever works best,” says McCreary. “The ones that are more rigid are the ones who say ‘You have to do things my way.”
A financial advisor for almost four decades, McCreary is also a gifted public speaker. In a TEDx talk last year, his hard-earned sense of humour was on full display. In describing the challenges of being the parent of a child with autism, he quipped “Way too many of our stories end with…and that’s why we’re not invited back there anymore.”
Published on July 19, 2017