A Nova Scotia mother who shared her family’s gut-wrenching experience with autism in the hopes of forcing political leaders to act, says she’s still waiting.
“What is their plan right now?” asked Carly Sutherland on Wednesday.
Her nine-year-old son Callum is severely impacted by autism. He uses few words and often resorts to violence. Sutherland and her husband John shared their story publicly in late November as they grappled with emotional and physical trauma and concerns for their finances.
READ MORE: N.S. family ‘scared’ as boy with severe autism faces release without home supports
Since then, a fundraising campaign from friends and more respite money from the province has barely served as a Band-Aid.
“His behaviour is so extreme that it has pushed me and my husband to our absolute limits,” she said.
Sitting at her kitchen table in a suburb of Halifax, Sutherland is matter-of-fact as she details biting, scratching, and holes that Callum has punched in his bedroom walls.
“I think it’s pushed beyond our limits but we just don’t have a choice. We have to keep going and I don’t think that’s a reasonable ask of any human being.”
On Tuesday night, Sutherland asked Prime Minister Justin Trudeau how his government plans to address the “crisis” that her’s and other families are in and where he stands on a national autism strategy.
“Families like mine should not have to subsidize health care and education for their disabled children,” she said, calling it an issue of “fundamental human rights.”
Trudeau didn’t give a straightforward answer and didn’t state his position on a national strategy. Instead, he pointed out that provinces are responsible for funding health care and education, and highlighted federal investments in research.
“I can imagine how difficult things must be for you and I am so proud of the community that has supported you,” he told her at his town hall-style event.
Sutherland said Trudeau didn’t give “much of an answer.”
To ensure her and her son’s safety, Sutherland completes the most basic tasks while he’s asleep — brushing his teeth, cleaning his room and clipping his nails.
“We have almost no interaction,” she said. “It’s devastating as a mother.”
Callum spends most of his time in his room because that’s where he wants to be, Sutherland says. He wants to be alone. She or her husband only go in when they have to or when they’re trying to teach him words to replace his violence. It’s slow going.
“I have bruises all over my body, my husband has bruises and bites all over his body,” she said.
But it’s the emotional trauma that takes the toll.
“It’s affected my mental health,” she said. “I’m here but I hardly recognize myself anymore.”
What her family needs doesn’t exist in Nova Scotia, according to Sutherland. She’s calling for the following services to be added:
- Crisis intervention for kids with autism
- Appropriate housing options
- Residential respite
- Access to publicly-funded treatment for kids over the age of six.
READ MORE: Autism Nova Scotia sees 50 per cent hike in calls about complex autism cases since 2016
She said two letters sent to Premier Stephen McNeil have gone unanswered. However, she did get a reply from the community services department who also received the letters and has a meeting with them later this month.
Asked why his office didn’t reply to the letter, McNeil said: “The department would have responded to the particular case you’re referring to.”
On Monday, another family came forward to Global News sharing a very similar story to the Sutherland’s. A.J. and Crystal Wyre said they fear for their family’s safety as they try to care for their son with autism.
Speaking to reporters on Wednesday, he didn’t directly answer any of the questions about his government’s plans for autism services, including whether any changes were coming as a result of the stories he’s heard and why Nova Scotia doesn’t have an autism strategy.
“We know there’s more work to do, we know there’s continued commitment on behalf of the citizens of this province,” he said. “We know it’s a growing issue.”
For a family in crisis that is relying on cash that their friends fundraised, there’s little in the government’s response that will change anything for the Sutherland family.
“I was hoping they would do more than say, ‘We can do better.’ I want to hear what better looks like,” Sutherland said.
She said “a good first step” would be a provincial autism strategy.
WATCH: Stephen McNeil can’t explain why Nova Scotia doesn’t have an autism strategy
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