Living with autism: A Nova Scotia family’s call for action
Published Monday, March 26, 2018 8:54PM ADT
Last Updated Tuesday, March 27, 2018 7:33AM ADT
A Nova Scotia woman whose son lives with severe autism says the federal and provincial governments needs to take action and develop a national autism strategy, as what’s currently in place isn’t enough.
Carly Sutherland’s son Callum was diagnosed with autism spectrum disorder by the age of three.
CTV News spent a day inside the Sutherland household to get a first-hand look at the challenges the family is facing and the struggles that come along with autism.
Walking in Callum’s shoes
With smiles and a laugh, nine-year-old Callum Sutherland captures your heart the minute you step inside his home.
“He's so handsome. It's over the top. I think they made him extra cute,” says Carly.
But Callum can be unpredictable and extreme with his emotions. Sometimes it takes 45 minutes just to put on pants.
There are also times when Callum turns violent. He kicks and scratches his mother.
Carly calls this a “blow-out.”
"It's a very extreme way to live,” says Carly. “My adrenaline is always pumping…. you never know which way it's going to go and things change in a heartbeat."
With her husband at work and other son at school, Carly has a lot to handle in the mornings. Oftentimes, Callum has several blow-ups.
When that happens, Carly is forced to put him in a safe place to calm down – his room.
"He could get hurt much more badly (downstairs), and unfortunately we just can't pad our whole house and put Plexiglas on every window and remove every projectile."
Carly says the mornings can take their toll.
"He's definitely my greatest source of stress. But he's also my greatest source of joy.”
Carly took a leave from work to care for Callum. She also pays seven different respite workers to help out.
One of those programs is called Play and Learning Together, a community program specializing in children with autism. Callum goes there to help integrate himself into the community and back to school.
“There isn't a really an overall strategy. Everyone's sort of scrambling,” says Carly. “There's great things happening in parts of the country, but no one is mobilizing all of this to say this is what needs to happen for all children."
Callum’s six-year-old brother Henry sometimes brings his friends to the house. Carly says that helps them understand why Callum is different.
"They're growing up with a perspective on disabilities and a comfort with disability that I never really had,” she says. “Callum is very accepted by everyone in the neighbourhood and he's very loved by everyone. I want him to be part of that social group."
Carly says it’s all about consistent education.
Just ask Henry.
"Some people who have autism can still not be like doing all things like Callum, they could be like me," he says.
Dinner is always eaten on the run. There are constant interruptions when Callum becomes agitated or darts out of sight.
"He likes to flush things down the toilet, so he has to be supervised in the washroom," Carly says.
But there are moments of calm too, when Callum is listening to music, playing on his iPad, or jumping on his mini trampoline.
The bedtime routine is most often performed by his dad. Carly says oftentimes it doesn’t go as planned when he is away on business.
"You can imagine if you're unable to communicate what you need and you're also unable to regulate the frustration you feel, about that inability to communicate, it's like the perfect storm," she says.
Pleading for resources
Carly says, even though she pays out of pocket for resources for Callum, she’s still in desperate need for additional support, and many other families are too.
"Right now he’s fine because I'm not putting any demands on him, but when I do put demands on him he's a two-person job, so both my husband and I are on 100 per cent of the time."
By demands, Carly means getting dressed or taking a bath; either of which could cause a blow-out.
Callum is one of 14,000 Nova Scotians living with autism. Carly wants to see a key program for children with autism – Early Intensive Behavioural Intervention – offered beyond age six.
"That program is critical to so many families,” she says. “But to then wash their hands of these kids when they turn six, which to me is what is happening, is failing an entire generation of children with autism.”
Right now that program is funded by the Nova Scotia Health Department.
"The funding then really transfers into the school system, for children early stages it's with the Department of Health and Wellness and then the supports and investments transition into the education system," says Nova Scotia Health Minister Randy Delorey.
But Carly says the two programs are radically different.
“Intensive behavioral intervention is people working intensively with your child. This is a job that's so exhausting they have people who burn out and have trouble retaining and attracting staff. But yet they really want families to take this on. And it's very difficult,” Carly says.
The programs also can be costly. Cynthia Carroll of Autism Nova Scotia says some families pay between $6,000 and $7,000 per month for intervention, therapy, and respite workers.
“Yes, there are some subsidy coming into those families from government, but they are still paying out of pocket. It tells us that we all have work to do still," she says.
The province currently spends $15.7 million annually on education, health care and community services support for people living with autism. It’s a drop in the bucket for families whose out-of-pocket expenses average $68,000 a year.
"If we don't do the interventions now, we'll pay later,” says autism specialist Jan Keddy. “We've got to invest in our kids, because they're the future."
Advocates want a wraparound approach, more support and services available to families at any stage.
"We do have mental health crisis lines (and) we do have mobile crisis teams. The challenge is they do not have capacity to support autism, so it's not that we don't have potential entities in place that could support families it's that we need trained professionals," says Cynthia Carroll.
Carly Sutherland wouldn’t disagree, but considers herself among the lucky ones. She has family close by and her community hosts fundraisers for her.
Despite the support, Carly says she’s always waiting for what's next.
"He's always cycled, but I’m aware that I have to build strength for the next time he takes a dip because it will happen. And the next time he takes a dip he's going to be that much bigger, and that much stronger and probably that much worse, so I have to use the times in between to gather my strength, because I know it's coming," she says.
The hardest part right now, she says, is that neither she nor Callum know what’s next, or whether they'll be prepared to handle it.
With files from CTV Atlantic’s Heather Butts.