When it comes to autism, we often hear about the lack of resources, the endless waiting lists… But concretely, for a parent, what happens when the diagnosis is made?
After a year and a half of waiting to begin the series of tests and follow-ups, Annick Daigneault, founder of Sur le fil, Fondation pour l'Inclusion, received his son's diagnosis. "I didn't feel any mourning," she says. My child was neither dead nor sick. His diagnosis named his distinctions and some of his characteristics. He didn't make him different, didn't turn him into a monster. He helped me to reveal it and to understand it better. »
Sitting around the table, surrounded by a psychomedical team, her first instinct was… to cry. “The unknown can still be scary! She also took the opportunity to ask all these specialists if they had, on the one hand, examples of autistic adults who are successful, who are happy and, of course, what were the resources at her disposal. layout. “You are going to help us, yes? They said yes, and I got readings – I read it all – referrals to organizations, brilliant adult names andinspirations with whom the team of Dr. Masse and Mottron work at the Rivière-des-Prairies Hospital, and the promise of five workshops-meetings. »
And then? " Afterwards. Nothing. »
Let's talk resources
The years go by. “We wait, we are on endless lists, the challenges of comprehension and expression grow, the lack of sleep continues and the differences are increasingly felt between our child and the community. »
No choice, Annick and her spouse at the time take matters into their own hands: "We have to become proactive and ally with our child so that he feels proud, loved and facilitates his inclusion. social. With the dad, we therefore chose to open up and learn to discover our son, how he works, and to equip ourselves. We did not want to delegate everything to professionals, but to learn, understand and be involved in the emancipation of this little poet with sweet curls. »
So they started attending workshops offered by different organizations, such as the CLSC, the Rivière-des-Prairies Hospital and Parents Stimulants.
“We have to stop taking ourselves for a wonder thing and recognize that, sometimes, we suffer, we screw up, we rush and we don't know. As a parent, as a being and as a couple. - Annick Daigneault, mother of a boy with autism spectrum disorder
Their pediatrician becomes their first ally. "You have to insist on finding a pearl and flushing out the undertakers who don't taketime to sit down with us, advises Annick. With social pediatrics making children everywhere in Quebec, do not hesitate to approach them. Even today, they are very precious in our journey and I love Dr Julien's team. »
Two years later…
Two years after having received the diagnosis, they are finally en titled to services at the CRDI (Rehabilitation Center for Intellectual Disabilities). “Finally, after 6 months of ICI therapy (intensive behavioral intervention), and after watering down our wine on both sides – to the point of not drinking wine at all! – we agreed that the approach was not for our family. Despite the openness, competence and gentleness of the workers, their interventions sounded more like a message being forced into our son's head. We then began a follow-up in private occupational therapy, supported by the Noël au Printemps Foundation and President's Choice, and training with Brigitte Harrisson (Approche Saccade) which I received as a gift parties and Christmas. »
Since then, Annick has continued to learn, read, inquire and train. “I ask questions, I listen. I learn. Inspired by my little happiness. »
Help for parents
Caring for a child with special needs is physically and psychologically demanding. However, parents do not have access to psychological help or specialized resources outside the private sector.
"It'sAgain thanks to a gift from a friend, I was able to start a follow-up that helped me enormously to get through periods of great upheaval in my life, and my network is made up of exceptional people, says Annick. I am grateful for the love that those around me generate. It's sometimes hard, but being honest with yourself, with others, and recognizing that you need help and creating a 'social debt' by asking for help is really life-saving. We have to stop taking ourselves for a wonder thing and recognize that sometimes we suffer, we crash, we rush and we don't know. As a parent, as a being and as a couple. »
Opening up and living together
“When we learn that our child has autism, the ideal is to take a deep breath and look for inspiration and ways to learn to better understand and communicate with your child, while respecting his or her culture. '. Often the reflex is to launch into a battle, to arm oneself 'against autism'. There follows a crusade to normalize our child as quickly as possible, the quest for the miracle recipe that will erase the characteristics that distinguish our child begins. »
According to Annick, this is not the best approach. “Fighting the dragon is exhausting and pointless,” she adds. We have to learn to know it, tame it, let it tame us and change us too, learn to live together in a mixed union, and sometimes, let's face it, destabilizing. When one respects and encourages a person's distinctions, the dragon thenbecomes engine and vehicle. »
“Sometimes you just have to change your gaze a little, and all the cracks finally let in light. Thanks to my son's autism, I also discover the best in man every day. - Annick Daigneault
With this in mind, Annick Daigneault founded Sur le fil, Foundation for Inclusion, in 2013. This organization promotes neurodiversity and supports the inclusion of people with autism in the community. “While the challenges of neurotypical and autistic encounter are many, the benefits are also great, and we learn a lot about opening up and really living together. This acceptance starts in the family,” she points out.
Annick is also working on an immersive and interactive documentary project, in virtual reality. Feet Upwill therefore allow the viewer to live five experiences by integrating the sensory and perceptual point of view of people with autism spectrum disorder (ASD) in different situations daily.
“The autistic people we work with are immeasurably generous, open and honest. The relationships that Martine, my co-director colleague, and I weave thanks to the autism of our children, are more than inspiring, says Annick. Sometimes you just have to change your look a little, and all the flaws finally let in light. Thanks to my son's autism, I also discover the best in man every day. »
Forthe future
Although we are talking more and more about autism and neurodiversity, there is still a lot of work to be done.
“The first instinct of most people who see atypical behavior or difference is to judge. It has happened that I put people in their place in their inappropriate interventions or their derogatory comments towards me or my son. But most of the time, I respond by raising awareness, by informing, by smiling. Also over time, I realize that, in general, people are not in bad faith. Most of them want to learn and are curious to know,” concludes Annick, who wishes, for the future, that we cherish and value all diversity and neurodiversity.
“I would like inclusion to be real and for my son to be convinced that he has his place, that we help him to achieve this while respecting his integrity and his uniqueness. May he be happy and proud to be who he is. And… I hope to live to be 107, top shape, to be there for my children as much as possible! »
