Parents 'scared' as son with severe autism faces release without home supports
'I work with vulnerable children for a living ... yet I can no longer manage my own precious child'
A Halifax-area mother issued an emotional plea for help Thursday for her family and for her nine-year-old son, who is due to be released next week from a confined hospital unit but suffers from violently aggressive fits of frustration because of his severe autism.
"Our Callum is a nine-year-old little boy and he's scared — we're scared," Carly Sutherland told reporters during a news conference at the Nova Scotia legislature.
"We need help and we are at the point where I am sitting in front of strangers begging you to share our story," she said through sobs as she was supported by her husband, John.
Sutherland said her family is living a "nightmare" because there are no proper supports or treatment for Callum.
Sutherland said her son was admitted to the IWK Health Centre Oct. 19, and remains confined to an isolated unit for safety reasons because there is no appropriate therapy available. She said Callum is far too violent to participate in the unit's school or recreational therapy, and isn't verbal enough to access counselling services.
Sutherland said her son, whom she described as "an awesome little guy," began losing his limited communication skills over the past year to the point where they "dropped off a cliff."
"His only means of expressing his constant frustration was to lash out with extreme aggression. I was covered in abrasions from bites and was concussed from being head-butted. On bad days there could be over 100 incidents of violence before breakfast."
Sutherland said she and her husband interpreted Callum's aggression as a "desperate cry for help."
Testing showed no underlying physical cause for her son's behaviour, Sutherland said. She said the family ended up hiring behavioural interventionists "at great expense" because Nova Scotia doesn't cover such services for anyone over the age of six.
She said she agrees with hospital staff that the best way to deal with Callum's complex needs is on an outpatient basis, but said the "joke" is that no public outpatient services exist.
3 things the family is looking for
The Sutherlands said they are asking the province for three things:
- To ensure their family and others have access to necessary resources to maintain the safety of their home.
- Co-ordination between the departments of Community Services, Health, and Education to develop a shared plan of support for children like Callum.
- To continue publicly funded, evidence-based interventions past the age of six.
"I call on the government of Nova Scotia to right the egregious wrong that is our treatment of children with autism in crisis and their families. Our family and the families who have faced this before us … need appropriate crisis intervention services," Sutherland said.
The provincial Health Department did not respond to the policy issues raised by Sutherland, referring a request for comment to the IWK.
The hospital's emailed response did not directly address the Sutherlands' immediate concerns. It said the needs of children with complex situations often require integrated care plans made in collaboration with the family, although it wasn't made clear how such a plan would provide help in this case.
Community Services Minister Kelly Regan issued a statement saying her department understood the challenges faced by parents, adding that "our hearts go out to them."
Regan said her department has a disability support program that aims to keep children living with their families.
"We recognize individuals with complex needs may sometimes require additional, temporary supports and we continue to work through these situations in collaboration with the IWK and the families. In cases such as this, department staff would be in regular contact with the family."
Not an isolated case, says advocacy group
Vicki Harvey, community outreach co-ordinator with Autism Nova Scotia, said the Sutherlands' story is not an isolated case. Although she couldn't provide statistics, Harvey said her organization has seen a "drastic increase" in calls from families and individuals dealing with similar problems.
"There is nothing to offer them," said Harvey. "So we need the government to come together to work with ... autism experts to come up with ways to provide supports and systems to the community."
Progressive Conservative Leader Jamie Baillie, whose party organized Thursday's media event, said families like the Sutherlands shouldn't have to call a press conference to get their children help.
"We shouldn't be here trying to shame a government into doing the right thing," said Baillie.
Carly Sutherland said the stress of her family's situation has left her feeling like a failure.
"I have a master's degree in special education. I work with vulnerable children for a living. I have non-violent crisis intervention training — yet I can no longer manage my own precious child," she said.