‘It has made me a better person’: What it’s like to raise a child with autism

Miles Clayton was two years old when his mom, Christine, started to notice subtle behavioural differences between him and his twin brother, Benjamin.

Miles was diagnosed with autism shortly before his third birthday, and that’s when everything changed for his family.

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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.

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“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.

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.

READ MORE: Understanding ABA therapy for children with autism

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.

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.

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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.

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.

READ MORE: ‘Autism Reality Experience’ helps people understand what it’s like to live with autism

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.”

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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.

READ MORE: Autism spectrum disorder affects 1 in 66 Canadian children, report says

Johnson’s son goes to a special semi-private school that focuses on children with autism. It’s called Giant Steps, and there are only two in Canada — one in Montreal and one in Toronto.

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.

Miles has brought Clayton’s family closer together, and his autism has taught her more about other people.

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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.”

Meghan.Collie@globalnews.ca