Autism: Falling through the cracks or taking off at 21
Special interview with Charles Lafortune
Many people know that Charles Lafortune and Sophie Prégent have a son, Mathis, who has autism. What they might not realize is that people with autism and their parents often lose access to funding and services when they reach the age of majority. Driven to help, the two performing artists launched Fondation Autiste & majeur, a cause to which Desjardins has given $500,000 in support.
"Before they're 21, kids with autism have access to special services to support their development. That stops once they reach the age of majority, and when they turn 21, they can no longer attend school. That's when it seems like our kids fall through the cracks. We have to make sure we're always there, which is a lot to manage," explains Lafortune, who is an actor, radio and TV host, executive producer and VP of content and creation at Pixcom.
Now that Mathis is 20, Lafortune and Prégent find themselves in that exact situation. "In June 2023, school will be ending for him," says his father. "We wondered what we could do to support his development going forward. That's why we decided to set up Fondation Autiste & majeur. We wanted to help parents like us who are in the same situation."
The mission? To fund day centres that offer activities that help adults with autism develop and maintain important skills. Participants can learn about their strengths, interests and how to thrive in their daily lives through music therapy, pet therapy, physical activity, recreation and art. The foundation will also help these centres run activities to help adults with autism develop job skills.
"There aren't many centres solely for people with autism. Many facilities serve both people with autism and people with intellectual or other disabilities, but people with autism need a place tailored to their needs."
After laying the groundwork for their foundation, Lafortune and Prégent began looking for financial partners to help them fulfill their mission. The response exceeded their expectations. "A lot of people quickly stepped up to get involved in our project," says Lafortune, who is still touched by their generosity.
One of the organizations they approached was Desjardins, which has pledged $500,000 to support the development of day centre services.
Parents and children left to their own devices
Through these services, the Fondation wants to help people with autism and their families. "If one of the parents has to stop working to take care of their child, the family loses income and society loses out as well, since that person isn't paying taxes anymore. Parents also need to know that their child has a place where they're loved and respected and where they can grow, socialize and have experiences beyond the family circle. This is important and it's reassuring for parents to know they're not alone and that they have a support network," says Lafortune.
Valérie Lavoie, Executive Vice-President, Property and Casualty Insurance at Desjardins, understands this all too well. Her oldest son, Jonathan, 24, has autism and dyspraxia, a motor development disorder that makes it difficult for him to perform certain tasks, such as buttoning clothes and cutting up food. "After attending a special class at a regular school until he was 21, Jonathan is now enrolled in adult education three days a week," says Lavoie. "He's in a class with other individuals with autism where he's learning to become more independent. And one day a week, he goes to an organization that helps adults with autism develop job skills."
Like other parents, Lavoie and her husband had to deal with access to many services ending when their son became an adult. Almost overnight, they had to find other organizations that could help Jonathan continue his development. "Parents are very much on their own at this point," she says. "When Jonathan was 15 or 16, I asked his teacher to develop a plan to help him become more independent. I wanted to know the different steps we'd have to take. She was surprised by my request. Services for people with autism are segmented by age, so it's hard to know what happens once they become an adult. It's an obstacle course."
For Lavoie, it's clear that Jonathan will stay at home as long as he needs to. "We'll support him as best we can. The biggest fear for parents of children with autism is wondering what will happen to them when we're no longer there," she says.
Learning from those with autism
Day-to-day life for parents of children with autism is demanding and challenging. But both Lafortune and Lavoie agree that their children also bring them great joy and have taught them valuable life lessons.
"Jonathan really inspires me in his ability to adapt," says Lavoie. "He's asked to do so much. He's faced major challenges and it can take a long time to learn a skill. He zipped up his pants by himself for the first time at 14. He practised buttoning his shirt every morning for months, but he didn't give up. Now it's easier for him. When I'm faced with challenges, whatever they may be, I think of my son and it motivates me to keep going. He can now do more and more by himself, and he's so proud. People with autism need to build their self-esteem too."
"Mathis has taught us resilience, patience and the importance of celebrating even the smallest wins," says Lafortune. "Right now, I'm celebrating the fact that he can put on antiperspirant by himself! It may seem small, but it took a lot of work to get to this point. For a lot of things, whether it's brushing his teeth or getting his backpack, he has to do it many, many times before it eventually pays off."
Preparing for your child's future
"When you have a child who's different, you have many concerns: first, supporting their day-to-day well-being with education and services tailored to their needs. You also have to think about their future, including finances," says Lafortune. "We're fortunate that we've been able to contribute to a registered disability savings plan to support Mathis' long-term financial security. We also have to set up family and testamentary trusts and make sure he gets everything he's entitled to such as social solidarity, drug coverage and so on."
It's important to understand that starting at age 18, people with autism who are declared unable to take care of themselves fall under the responsibility of public curatorship. "Currently, under the law, only one parent can be a curator. That will change when the law is reformed, but it won't be retroactive," says Lafortune. "Right now, Sophie is Mathis' curator. If I want to become curator too, I'll have to do another psychosocial evaluation and go back before the judge. Making it retroactive is our next big challenge."
Did you know that autism is on the rise in Quebec?
Once considered rare at 4 or 5 cases in 10,000 (or 0.05% of the population), the prevalence of autism is now 1.5%, according to data provided by the Fédération québécoise de l'autisme. However, this figure seems conservative. According to a recent study in the United States, 1 in 68 eight-year-olds is affected by autism. Quebec follows the same trend.
For journalists only:
Jean-Philippe Lepage, Desjardins