‘It has made me a better person’: What it’s like to raise a child with autism
“He wasn’t using his language as much… he wasn’t responding to his name very often… [and] he would do a 300-piece puzzle in 40 minutes. That’s amazing, but it’s not normal for a two-year-old,” Clayton told Global News.
Miles was diagnosed with autism shortly before his third birthday, and that’s when everything changed for his family.
“The diagnosis opened up the doors to get into the Ontario Autism Program. That’s where you get [financial] support, but to get that support, there was a wait list for three years,” said Clayton, who lives in Ottawa with her family.
In the meantime, Miles required around-the-clock care. He needed therapy to teach him basic life skills like looking somebody in the eye or laughing appropriately. He also needed speech therapy, occupational therapy and physiotherapy.
While the Claytons waited to reach the end of the wait list, they were faced with a decision: place Miles in the public education system or pay for private care.
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“If you go into the public school system, you’re not paying for anything because they’ll give you an educational assistant,” said Clayton. “The challenge is that an educational assistant is not a therapist, and, unless you have a very severe child, usually the assistant is looking after your child and maybe three others.”
For these reasons, the Claytons paid for Miles’ private care out of pocket for three years.
“We were fortunate. We had the financial resources that we were able to pay for things privately… but [it] was really expensive. It was about $85,000 a year,” said Clayton. “Most people are in a different financial position. I recognize how fortunate we are.”
“Like many parents, we remortgaged our house, we took out our RRSPs and we borrowed from family. You do what you have to do for your kids.”
Clayton says the costs are so high because Miles is on the severe end of the spectrum, but it’s different for everybody.
“Some kids need a lot less, but Miles [needs] a one-on-one, dedicated teacher all day, every day,” Clayton said.
As with anything, there are positive and negative aspects to having a child with autism. At present, parents across the country are most concerned about the quality and cost of care provided to children on the spectrum.
The same kind of therapy doesn’t work for every child
While Miles was on the wait list for the Ontario Autism Program, he underwent Floortime therapy.
“Floortime… is based on the premise that kids with autism do certain things, like not look you in the eye, because they have sensory needs that aren’t being met. And Miles certainly had a lot of that,” said Clayton.
“Imagine there’s an editor in your brain, and that editor in your brain filters out all the noise.”
For a lot of kids with autism, says Clayton, there is no editor. Suddenly, the footsteps of the person walking past you are just as loud as the person you’re talking to.
During Floortime, a parent or therapist gets down on the floor with the child to play and interact with them at their level in an effort to reduce distractions and let the child control his or her surroundings.
However, Floortime isn’t funded by the Ontario Autism Program. Once accepted, the Claytons were given direct funding for Miles to do applied behaviour analysis (ABA), which he does now.
ABA is one of the most common types of autism therapy, and it’s based on the principle that if you do a certain behaviour, you get a reward.
“[It’s] learning life skills through behaviour modification,” Clayton said.
Floortime helped Miles manage his sensory needs so that when he was accepted into the Ontario Autism Program, he was ready to advance to ABA — but Clayton isn’t sure he would be where he is today without what he learned in Floortime.
“There are a lot of other [therapies] in use that aren’t funded but work very well,” said Clayton.
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Lisa Palasti, director of RDI Professional Training Canada, can attest to that. She teaches parents and children Relationship Development Intervention, another form of therapy that teaches those with autism the foundations for forming social connections.
“[In RDI], we’re developing the mind. We’re developing the mental tools and the mental habits that are going to help an individual develop dynamic intelligence,” said Palasti. “That’s the ability to flexibly think, to plan, to predict, to widen your perspective, to learn from your experiences and to develop a strong sense of self.”
Although this form of autism therapy could be a good fit for many children across the country, it’s currently only funded in British Columbia and Alberta, said Palasti.
“What a child might need at the age of 10 might be much more involved than what a child might need at the age of four,” Palasti said. Until more kinds of therapy are funded in more places, kids could be missing out on the treatment that fits them best.
Funding continues to be a major issue across Canada
Living in Ontario, Clayton is extremely concerned about what will happen to Miles’ care when the new Ontario Autism Program takes effect.
“Right now, Miles’ therapy is funded, and based on the recent announcement from the minister, that funding will be extended for six months,” said Clayton. “After that, Miles will be allowed access to $5,000 a year, but he needs $80,000 a year. We have no more house to mortgage, we have no RRSP to draw upon.”
For Clayton, this policy change will affect Miles’ health care and his education.
“The last thing we want to do is stop his therapy because right now… it’s working. He’s clearly in this period of having a developmental leap, and I don’t want to take that away from him. His therapy is not just therapy — it’s how he learns.”
WATCH (Feb. 25, 2019): Family with 2 children with autism react to long wait times for ABA therapy
But the concern about funding isn’t limited to Ontario.
Kelly Johnson, who lives in Montreal, has a nine-year-old son on the spectrum. She’s also concerned about her child’s access to services.
“[If a child was] already able to get public services… once they get diagnosed with autism, they go onto a separate wait list, and all of a sudden, the same services that would’ve been applicable (like speech therapy or occupational therapy) disappear,” said Johnson. “It’s almost like you go into a black hole of wait lists.”
Giant Steps is partially subsidized so Johnson has to pay for part of her son’s education. She also pays for most of his speech therapy and occupational therapy, too.
“The typical health insurance plan will cover up to $500 a year, and to give you an idea, an average speech or occupational therapy session is between $80 to $150,” said Johnson. Her son needs one session of each per week, which means she maxes out her coverage in the first month of every year.
Autism is only a difference, not a disability
Having a child with autism comes with its challenges, but Clayton says it has many beautiful parts, too.
“[It has] made me a better person,” Clayton said. “I’ve learned that laughter and looking on the bright side of things can really get you through anything. I’ve learned to be much more accepting of others and not to judge people the way I might’ve in the past.”
Miles has brought Clayton’s family closer together, and his autism has taught her more about other people.
“Having a kid with autism has really strengthened the bond in my family. I have a wonderful husband… and I could not imagine going through this journey with anybody else,” said Clayton. “It’s tough to have a sibling with autism, let alone a twin. But at seven, [Benjamin] shows a maturity and a kindness towards his brother that inspires me every day.”
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Miles loves to be hugged, he loves to be cuddled and he loves to be chased, Clayton said.
“Having a back-and-forth verbal conversation with my child — which Miles just had with me for the first time last week — that’s a miracle. A week ago, we put on the song Happy, and he started to dance. That has never happened before. That’s a miracle,” said Clayton.
“When he looks me in the eye… when he tells me he loves me… when he laughs at something funny… for us, those are miracles, and I get to experience those every day.”