Since our son was diagnosed with Autism Spectrum Disorder (ASD) over a year ago, I have searched in vain for how to turn things around, how to save him, get him to watch us , that he speaks, that he has friends, that he is “normal”. Then, I consulted with every possible healthcare professional imaginable. By force of circumstances, I became an “activist”: I take part in walks for autism, I dress my son in blue on April 2 (international autism day), I get involved with parents of autism. ‘autistic children, I read everything I can find on the subject, I write articles about it, I wonder about what caused this disorder in our child, I stay up late at night thinking about it. I am looking for answers and
Recently, a new door has opened. During an exchange on the internet with the brilliant blogger with autism Asperger’s Marie Josée Cordeau, I understood that I was missing some keys to enter the world of my child and to accept his difference.
To take this conversation further, I decided to do an interview with Marie Josée. Here are the highlights.
According to Marie Josée, autistic people are very intelligent and sensitive people. They see and feel things differently from us, but that doesn’t mean they’re out of touch like some people think. Marie Josée realized her “handicap” very early on, but had to fight to be diagnosed with ASD as an adult.
“I always thought I was different. From a young age, I liked to play on my own. I didn’t like team sports or playtime. As a teenager, I did not have a great emotional maturity, I was out of step with others. Growing up, I quickly noticed that when there were too many people, noise, light, it became stressful for me and I could no longer speak as if I no longer had access to my brain. I felt exhausted, the battery dead, weak. I had to isolate myself. Often, I felt the judgment of others without knowing why, without being able to name it ”.
When asked if autistic people feel emotions like we do, she responds with a lot of introspection: “There are a lot of things that make me cry, but some emotions are hard for me to name. For example, I feel empathy, but I don’t express it the same way as a “neurotypical” person, so sometimes people will think that I don’t feel anything, which is wrong. When I experience anxiety about social situations, I deal with it by looking for solutions. I often joke that it’s like I have a male brain! Over time, I have learned to decode what people say without taking them literally. Before, words were my only code.
Marie Josée explains that there is great purity in autistic people. “The autistic does not try to manipulate so that we have a good opinion of him. He has no mischief either, he does not know how to act. I say what I need and I do not go through four paths! My spouse can attest to that. He knows I’m different, that I like to talk about real things and he accepts me as I am, ”she says confidently.
The one who studied law and then in cinema, has lived as a couple for years, has a job in a school board in Montérégie, is a blogger, speaker and has already written a book on harassment at work. According to our criteria, Marie Josée has a rather “normal” life, but she is often accused of not being a true autistic one, because she suffers from Asperger’s syndrome and expresses herself very well. “I am often accused of not representing other autistic people, because my autism is of ‘high level’, but I think I speak well for all those who have no voice. We all suffer the same even if no one with autism is alike. My point of view as an Asperger is that we can help the world understand other people with autism. Even if we have an image as being more “functional and scholarly”, we see ourselves as part of the same group. I identify with autistic people, with their world and I think we have to help each other. ”
Marie Josée confirms that we should not think that autistic people form a homogeneous group. There are as many autists as there are forms of autism. Each autistic person evolves in their own way, to the best of their ability. In her case, she says she familiarized herself with the socialization difficulties associated with her disorder: “Being autistic is like going to Japan, but no one has explained the customs, social codes or the language to you! ” she exclaims. Over time, she has been able to develop social skills, but this always requires a conscious effort. “With a diagnosis, I knew how to accept my limits even if I try to push them back to live better in society. You have to learn not to feel sorry for yourself and especially not to blame yourself. Every step is progress. I no longer see my difficulties as a failure as before. I discover the pleasure of reaching out to people, of getting to know them, of receiving their energy. I really like helping others, it allows me to move forward ”.
Second message from Marie Josée: you have to learn to respect the rhythm and the way you are autistic. “An autistic child will follow his rhythm and acclimatize to his everyday life. No need to force him to socialize in large groups of people if it upsets him. Instead, suggest that she go out and socialize in stages, in a small group. Allow him to isolate himself if that is what he wishes. He doesn’t suffer when he plays on his own. Me, when I am alone, I resource myself. I also like to meditate, become aware of my body to calm it down, stop being in the anticipation of life, learn to adapt to new things. I try not to be afraid of what will happen anymore. I can even give a talk on autism in front of 75 people, but autism is is my subject of particular interest! ” she adds with humor.
What about the resources currently offered to autistic people in Quebec?
“For adults, it’s a disaster. There is no service after the age of 21. We are left behind, left to fend for ourselves in a universe that seems hostile or foreign to us. This absolutely has to change. Political and social pressure must be exerted to acquire rights and services. For my part, I am an activist with my deputies, I make people aware by writing, by giving lectures on autism and I prepare a book on social codes addressed to autistic people and to all those around them. ”
What future for today’s autistic people?
“I think it’s important to take time to explain social codes to autistic people; to others, we must explain the difference in the universe of autistic people and not be intolerant of them. We must reach people who have no knowledge or who have preconceived ideas on the subject. Too many people are afraid and still associate it with intellectual disability and mental illness. In the future, we must think about integrating autistic people into the job market, preparing them to face difficult interviews, and raising awareness among employers. People with autism can make great employees who are highly motivated by the job they choose! They have, among other things, talents in computer science and in several fields. Maybe they will be less sociable, but more productive ?! As for me, coming out to work in August 2013, it went pretty well. I admit that some people have remained frozen, but ultimately, they are more tolerant with me in the face of some of my behaviors. I love my job and the great team that I work with every day. I am even thinking of setting up a sponsorship association for adult autism such as Big Brothers and Big Sisters of Greater Montreal, to support them in their day-to-day lives. I would also like, in the near future, to organize coffee gatherings for people on the autism spectrum and their families. In April, I just wrote the last text for my blog “52 weeks with autistic asperger”, a very touching experience. Projects, that’s not what I miss! ” she concludes.