Ever since our son was diagnosed with ASD (autism spectrum disorder) over a year ago, I have tried in vain to change the future course of events. I wanted to save him, make him look at us and finally speak, make sure he had friends and that he could have a "normal" life... I consulted with every doctor and specialist imaginable. Out of necessity, I became an "activist." I marched for autism, I dressed my son in blue on April 2 (World autism Awareness Day), I got involved with other parents with children with ASD, I read everything I could get my hands on, I wrote articles about it, I lay awake at night wondering what could have possibly caused this disorder in our child... I was on a quest. I needed answers and hope.
Then a new door opened. During an online exchange with Marie Josée Cordeau, a brilliant blogger with Asperger Syndrome, I realized that I was missing the key elements that would help me unlock my child's world, and accept his differences. Inspired, I arranged an interview with her to gain more insight. Here are some of the highlights.
According to Marie Josée, people with ASD are extremely intelligent and sensitive. They don't see and feel things the way the rest of us do, but this doesn't mean that they aren't connected to other human beings. Marie Josée became aware of her disability very early on but had to fight to get an ASD diagnosis as an adult.
"I always felt different. From a young age, I liked to play alone. I didn't like team sports, or recess. As a teen, I wasn't very emotionally mature; I lagged in relation to the others. As I got older, I noticed that when there were too many people around, too much noise, too many lights, I was easily overwhelmed and would lose the power to speak. It was like there was no longer any connection between my brain and me. I would feel exhausted, drained, and weak, and I would need to be alone. I often felt judged for this by others, without understanding why, and without having the words to describe it."
When asked if people with ASD experience emotions the way we do, she thinks deeply before answering: "A lot of things make me cry, but certain emotions are difficult for me to identify. For example, I feel empathy, but I won't express it in the same way that a "neurotypical" person will and because of that some people think I don't care but I do. When I experience anxiety in social situations, for example, I manage by consciously seeking a solution to the problem. I often joke that I've been saddled with a man's brain! Over time, I have learned to interpret what people are saying without taking them literally at their word, but words used to be my only guide. I believed what people were telling me even if their body language or facial expressions implied something else."
Marie Josée explains that there is a beautiful innocence in ASD. "A person with autism will never try to manipulate a situation to make themselves look better. They are without malice, and they don't know how to pretend. I say what I need to and I don't mince words! My partner can attest to this. He knows I'm different, that I like to talk about stuff that is real, and he accepts me as I am," she says with confidence.
By our own criteria, Marie Josée lives a rather "normal" life: she has studied law, and film, has been in a relationship for years, has a job at the Montérégie school board, is a blogger, a speaker, and a writer who has written a book about harassment in the workplace. To her dismay, she is often criticized for not being representative of all people on the spectrum because she has Asperger Syndrome and can express herself very well.
"I am often accused of not representing people with ASD because I have what's called "High Functioning" autism, but I like to think that I am speaking for all those who cannot. Everyone with autism suffers equally even though no two cases are alike. My point of view as someone with Asperger Syndrome is that I can help the world understand autism. Even if we appear more "high-functioning and savant," we consider ourselves to be part of the same group. I identify with people with autism, to their world, and I think we should definitely help each other."
Marie Josée confirms that we shouldn't think of people with ASD as belonging to a homogenous group. There are as many expressions of ASD as there are people with the disorder. Every person with ASD evolves in their own way, to the best of their ability. In her case, she familiarized herself with the social problems associated with her disorder: "Having ASD is like visiting a foreign country. You don't speak the language, and no one has taken the time to explain any of the customs or social conventions that are expected of you!" she says emphatically. With time she has developed social skills, but they require constant conscious effort. "With my diagnosis, I have learned to accept my limits even if I am constantly trying to push them to make living with others easier. I had to learn not to feel sorry for myself, and especially not to be angry with myself. Every step is a step forward. I no longer see my difficulties as failures. I have discovered the pleasure of talking to people, of getting to know them, of receiving their energy. I also really love helping others; it helps me move forward."
Marie Josée's other message is that we must learn to respect the ASD way of being. "Children with autism will follow their own pace and get used to their everyday routine. There is no need to force them to socialize in large groups if it upsets them. Offer them the opportunity to go out and socialize in small groups. Let them be alone if that's what they want. They are not suffering when they play by themselves. When I'm alone I replenish my energy levels. I also like to meditate; it helps me be more aware of my body in order to calm it down, to live in the present, to accept change. I am trying to stop being afraid of what is going to happen. I can even give a lecture on autism in front of 75 people, but then again," she jokes, "it is my topic of particular interest!"
What about ASD resources in Quebec?
"For adults, it's a disaster. There are no services for anyone over 21. We are left to fend for ourselves in a world that feels alien and sometimes hostile. This has to change. Serious political and social pressures need to be made to acquire basic rights and services. I, for one, have been lobbying my MPs, raising awareness with my writing, and lecturing on autism. I am also putting together a book on social conventions intended for people with ASD and their entourage."
What kind of future do you foresee for someone with ASD?
"I think it's important to take the time to teach social conventions to people with ASD; for those surrounding them, they will need to understand that it's a different world than theirs and become more tolerant. We have to reach those who know nothing about autism, or who already have preconceived ideas. There are still too many people who are scared because they associate autism with intellectual disability and mental illness. Next, we need to focus on better integration processes to get people with ASD into the work force, prepare them for challenging interviews, and raise awareness among potential employers. People with ASD can be excellent employees highly motivated to work on a chosen task! They are, for example, particularly skilled when it comes to computers and new technology. They might be less social, but more productive!
When I did my coming out at work in August 2013, it all went rather well. I admit that some people have remained rather cool, but ultimately they are more tolerant of some of my manners and actions. I love my job, and I work with a great team. I am now thinking of starting up a sponsorship association, along the same lines of the Big Brothers Big Sisters of Greater Montreal, to assist adults with ASD in their everyday life. I would also like to organize "Coffee-talks" («Café-rencontres») for people on the spectrum, their friends and family. In April, I wrote the final entry to my blog "52 weeks with an Asperger" («52 semaines avec une autiste Asperger ou le syndrome d'Asperger revisité») and it was a very moving experience. There are so many things I still want to do for the ASD community!" she concludes.
You can read Marie Josée Cordeau's blog here.
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