When my daughter was born, I was the king of the world. My wife and I are teachers and we are just starting out in the workforce. We were young, beautiful, and finally financially independent! The arrival of our daughter Gabrielle was desired, scheduled. Gabrielle was a very calm baby, who slept quickly. She could stay for hours in her cozy. When we went to dinner with our friends, she under her arm, she didn’t ask for much. As in addition to her smiled a lot, we never asked questions. We just found her ideal. In retrospect, we said to ourselves that she cried very little and that she was very enduring to the pain… Her little sister arrived two years later and the only thing that alerted us was Gabrielle’s language delay. . Gabrielle returned to kindergarten. It was our neighbor at the time who worked in the medico-social sector who kindly recommended a pediatrician. Our family doctor, serious however, had marked at each assessment, six months, nine months “child perfectly awake, normal development.”
This pediatrician referred us to other specialists: a psychomotor therapist, a speech therapist, another pediatrician… And there, I would say that people did not dare to say, or that they were afraid of making a mistake. I have this precise memory: I accompanied Gabrielle for yet another test and I observed her. I was also looking at the decoration of the cabinet, when suddenly I saw a sheet explaining what autism was: and there I understood. It took a long time to diagnose.
For my wife, as for me, it was not much of a surprise. Is it a relief to know? I won’t go that far. With my knowledge of autism stopping at “Rain Man”, our first instinct was to wonder what was going to happen. The people I spoke to immediately made me understand that autism is not a disease but a handicap. It’s important to say this because a lot of people think you can heal. But no: there is no cure for autism. We learn to live with it. We adapt. We adopt strategies.
As Gabrielle is an awake autistic, of a good little level, the dysfunctions went unnoticed at first: as a child, she was clumsy in her relationship with others, but it was not serious, it even gave her even more charm. Except that she was evolving very slowly compared to her body, to her age. I still have immense anger in me: the first year of school, we were never told that she was crying. When we learned two years later that the kid cried at every recess, all alone in her corner, you can imagine my feeling: the school principal had not seen fit to warn us. I was stunned. We could have acted… The teacher that I am felt betrayed. When she was 4 years old, the little one had an AVS (school life support), before the diagnosis was made.
For primary, Gabrielle joined a special class which takes care of children with a developmental disorder within a “normal” school: small numbers, specialized supervision. And gradually, the idea was to make inclusion, that is to say to allow Gabrielle to integrate a normal course. So Gabrielle had a terrific specialist teacher and the year of first grade went really well. Gradually, the following years, she did a few hours in a normal class, in maths, in French, and things were going quite well. She arrived in CM2 in total inclusion. Not a minute in the specialized class! For us, it was the triumph. We believed in it completely.
At that time, we had a double chance. There was the equivalent of this structure in a college in the region and the person who ran that college – luck! -, was that of the elementary who had just been transferred. We opted for a 6th inclusion. The principal implemented the strategies. Gabrielle would have an AVS. It was the largest college in the region. And then there was the pre-school… After two hours, the head teacher told the parents to leave, so my wife and I went to see her to talk to her about Gabrielle’s autism. The teacher didn’t know. No teacher knew about it. We were shocked. We hung on to the branches. The kid was dumped; teachers too. An entry in 6th, it’s not easy, so there! Gabrielle panicked, she behaved inappropriately, until one day during a parent-teacher meeting, I learned that the parents of a little girl in the same class as Gabrielle had put a handrail against her. . Gabrielle had taken a liking to their daughter and she was hugging her. The other was afraid of it. They filed a handrail against a 12 year old girl!
Gabrielle was immediately repatriated to a specialized class. An education counselor got in the way, firing Gabrielle at the slightest problem. He was calling me, I had to come get her. He fired a disabled student every day! She no longer made an inclusion, she was singled out. We saw with horror the emergence of a default orientation. We were then recommended a private college very open to difference, and we made the bet to get Gabrielle out of her specialized class to go to this college. She agreed to change, to leave the cocoon. It was very well received. She is going to be 16 and she is very late.
She’s a teenager who asks herself lots of questions. Like young girls her age, she would like to talk about it. Except she doesn’t have any friends. She wants a boyfriend, she is jealous of the girls in her class, so she expresses herself in a vulgar or obscene way. She is the victim of some who manipulate her. She lacks perspective and takes everything at face value. We’re afraid for her right now. Afraid that she will turn the others back, because we no longer have a structure behind to help us. We don’t feel that she is happy. This exaltation when she gargles swear words in front of others is the testimony of a great unease. His discomfort calls out to us as parents. We also understand the position of students who do not want a madwoman in their class. We are especially afraid because it is prey. So I monitor social networks, we sometimes deprive her of it, but it breaks our hearts to deprive her of her only means of communication. Currently, the question is: are we considering a professional future in a protected or ordinary environment? Gabrielle is on the borderline between “we can do it” and “she remains disabled”. To put her in a specialized center, she is too normal. Conversely, it is not enough in a normal course. For the moment, it will return in second framed, with adjustments.
What I dream of … It is impossible to obtain, but if only! Here it is: if my daughter was in a wheelchair, and accidentally crushed your foot while rolling on it, what would you say? You would apologize for being in its path … I would like people to understand what an invisible disability is.
Find in this book the testimony moving from a father, Maxime Gillio, who tells us about his daily life with his autistic daughter. “My daughter wanted to put her finger in the noses of others”, ed. Pygmalion.