Each year, over 15,000 Quebec children receive a diagnosis of autism spectrum disorder (ASD). And parents have to cope with their new reality, find the resources to support their child, and keep their head above water all at the same time.
By Anne-Frédérique Hébert-Dolbec
Moreover, all ASD kids are unique, manifesting their disorder in different ways. This can cloud how a parent reacts when told of their child’s diagnosis.
“When my son’s pediatrician recommended I get him evaluated, I resisted,” says Nancy Bergeron, mother of 15-year-old “Mathis” (not his real name). “He didn’t correspond at all with the image I had of autism. I saw him as a difficult child, but he had no problem approaching others and interacting with them. When the diagnosis was made, I spent two years in mourning.”
“It’ll be one year on December 23rd,” says Veronik Marchand. A date forever engraved in her memory, as that’s she received the news that her little Scarlett, 2, has a severe to moderate case of ASD. In this mother’s case, it toughened her: “All of a sudden I was unshakeable. I wanted to be a pillar for my family to lean on. My daughter is marvelous, and I was ready to do anything so she could develop and bloom like other children.”
Living with an autistic child comes with a lot of unknowns. Will the child have trouble making friends? Will he or she be able to get through school, find a career, and lead a normal life? Often, parents have very little access to a pace to answer their many questions. After a diagnosis, the wait can be over a year and a half for the sorts of services that can help: physiotherapy, speech therapy, psychology, etc.
“Studies show that if the wait is longer than three months, a child’s sense of efficiency towards their child is much smaller,” says Véronique Chiasson, ergotherapist and parental accompanier in Ontario. “They feel powerless, they get discouraged.
“An ASD diagnosis throws everything into disarray. It’s not a sickness that will heal. If the child is having these difficulties, it’s for life.”
Parents are often reduced to surfing the web, participating in chat rooms, and using trial and error in order to find ways to help their little one.
“My girl got her diagnosis very late, at age 14,” says Stéphanie Lussier, mother of Danaé, who today is 18. “I didn’t raise her as autistic. That has its advantages and its disadvantages. Danaé is somewhat capable of dealing with surprises. On the other hand, it made for a lot of crises to manage. I learned to do that all by myself.”
ASD is usually first diagnosed in childhood with many of the most-obvious signs presenting around 2-3 years old, says the American Psychiatric Association, which also points out that research has shown that autism is not caused by bad parenting. But after early childhood, primary and secondary school can make for some roller coaster rides. The educational system isn’t always adapted to kids who are different. Parents sometimes have to fight to make sure adaptation plans are respected in classroom settings.
Often, teachers aren’t trained to handle autistic students. “Without support, they eventually end up at the end of their rope,” observes Chiasson. “They don’t want to see any more special needs students in their classroom.”
“Schools are pretty closed systems, sometimes to the detriment of students,” Nancy Bergeron argues. “The child has to adapt to the services offered by the school, and not vice-versa. My son, for example, doesn’t cause much trouble. They haven’t given him anyone special to intervene. But I end up being his punching bag when he comes back to school, thanks to all his pent-up stress.”
There are some things that all our parents agree on: you have to live for the moment, stop projecting into the future, and celebrate each little victory. “I’m slowly learning to live and let live,” says Veronik Marchand.
Proud mother Stéphanie Lussier waxes poetic about her little one: “Danaé spots details no one else sees: a cat’s nose in the shape of a heart, the colour of a flower, a ray of sunlight. She’s very creative. She’s taught me to let go, and to love the difference.”
For more information and for help:
– La federation Québécoise de l’autisme et des autres troubles envahissants (The Quebec Autism and Other Invasive Disorders Federation) – in Montreal, (514) 524-6114
– La federation Québécoise de l’autisme (The Quebec Autism Federation) – anywhere in Québec, (514) 270-7386
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