‘Nothing has changed’: Nova Scotia teen with autism speaks out as gaps in autism services persist
Other than an age gap, there’s not much separating the stories of Callum Sutherland and Cuen Eng.
Both have autism, both have been admitted to the IWK’s Garron Centre because of violent behaviour and both have struggled to get the treatment they need.
But one big difference is that Eng can tell his own story.
After hearing about nine-year-old Callum’s seven-week stay at the Halifax children’s hospital, Eng said he was “frustrated” to see the status quo persist since he was there in the winter of 2015.
Callum was admitted to the centre in October. His parents went public with his story last month.
In an emotional plea, Callum’s mother Carly said her family is “scared” as they faced her son’s discharge with no supports in place at home and no significant change in Callum’s behaviour since he was admitted to the IWK.
“It’s pretty familiar and really sad that nothing has changed over the many years that this has been happening,” Eng said in an interview on Friday.
In a statement issued on Friday, Health and Wellness Minister Randy Delorey said that the IWK, care providers, community programs and provincial departments come together to tailor the care for those with complex care needs and their plans.
“We want families to be aware that there are program supports and services across multiple systems to help support children with complex needs, and we will continue to work in collaboration with the IWK and families to tailor responses to meet individual needs,” said Delorey in an emailed statement.
“The Department of Education and Early Childhood Development is currently reviewing its services for children with diverse needs through the Commission on Inclusive Education that was established in June. Consultations are now underway, with the report and recommendations expected at the end of March.”
Delorey said he was unable to comment of individual cases due to privacy reasons.
WATCH: Carly Sutherland speaks to reporters about her family’s desperate search for help for their son, who has autism.
Speaking publicly is difficult for Eng, but hearing the cycle repeat prompted Eng to go public.
“It should be common sense to help the kids that are struggling,” he said.
After a call to police on Jan. 28, 2015, Eng spent 37 days at the Garron Centre. But with no specific services and treatment for children with autism, Eng and his mother Marni Adams say it changed nothing for their family.
Services were “non-existent,” Eng said. “The entire experience wasn’t pleasant.”
“There was nothing for autism,” Adams said. “So Cuen… came out of the Garron Centre no different than when he went in.”
WATCH: An extended version of our interview with Cuen Eng and his mother Marni Adams.
The behavioural intervention treatment that children with autism need is publicly funded in Nova Scotia until the age of six.
After that age, children can get help through the public school system, but resources are scarce and wait times can be long. Those who are able to, pay for support privately.
Eng says he wants that to change, saying the age restriction “makes absolutely no sense.”
“People who are above the age of six are still affected by autism.”
Without getting the treatment that teaches people with autism how to navigate a world that wasn’t built for them, Eng said he isn’t able to regularly go to school.
Despite his sporadic attendance, he excels in academics. At the age of 15, he is taking Grade 12 chemistry and computer programming and Grade 11 English and math.
“My son is brilliant and yet can’t survive in school consistently, he is so under-utilizing his brain, he is so under-utilizing his skills,” Marni Adams said.
“The lack of system that we have in place, the lack of supports for autism is really crippling my family.”
Without the supports and treatment in place, Adams said she is unable to help her son grow his skill set.
“I can’t put any sort of demand on my son because I don’t know if it will make him violent and if it does what is there to help me.”
‘Nobody wants to be violent’
Adams said the last time she called the police on her son, was also the last time she challenged him to go out of his comfort zone.
She said a violent incident in July 2016 again prompted her to call 911 and again the police brought Eng to the IWK.
“The hospital did nothing,” she said. “His brother and I were extremely afraid for our safety and they wanted to send him home.”
“I just realized that I can’t continue to ask Cuen to do things that make him uncomfortable because he doesn’t have the skills and so since then, I just don’t.”
Eng said he’s gone to the IWK emergency department more than 10 times but has only been admitted twice. Each time, he said he would wait a few hours in a separate room and more often than not he would have cooled off and the hospital would send him back home.
“We don’t want to hurt people,” he said. “Nobody wants to be violent, it’s just that we don’t have any other way to deal with things.”
He says his case and those of other people with autism, show more treatment and training programs are needed to ensure kids with autism are equipped with the skills they need.
“We need more crisis prevention,” he said. “Ways to teach children with autism how to not be violent or have negative behaviour and …that should minimize the amount of crisis intervention we would need.”
He also said there should be a team dedicated to helping families who are in crisis. He says the only option for his family right now is to call 911.
‘At the current rate, there’s not going to be any services in place’
Eng said more training would mean he could participate in school regularly. But he said he doesn’t see the level of support changing.
“I want to further my education,” he said. “But at the current rate, there’s not going to be any services in place by the time that I will be graduating.”
In the months after Eng was admitted to the IWK in 2015, Adams said she spoke with her MLA Ben Jessome, senior staff at the IWK and then-health minister Leo Glavine. She said her meeting with Glavine left her feeling optimistic.
“He had given myself and Autism Nova Scotia, quite a lot of time,” Adams said. “I thought he was an amazing listener, I felt empathy from him and I walked away and I felt hopeful.”
But she said nothing changed, so a few months later she went public. But again nothing changed, so she says she gave up.
“Since then I just want to blend I don’t want any attention drawn on family, I think because I had lost hope,” she said.
Maintaining her family’s “dignity” and privacy is a balancing act as they again go public. But she said she’s doing it because her son wants to make a difference.
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