Interview – Back A child without a history A delightfully brutal story, novelist and journalist Minh Tran Hei immerses us in her chaotic daily life as the mother of another child. Intimate and universal.
Some books carry everything. They take your breath away and you won’t let go. This is the case with the book A child without a story, from our collaborator Minh Tran Hui. After reading it, it leaves you K.-O. facing the mysterious continent you have just crossed: autism. His wanderings and ravages, his troubles, his warriors and battlefields.
Minn soberly tells the story of her son Paul, 6 (soon to be 9), and his shattered life, which he nevertheless moves on from. Looking at things head on. Without pathos and lamentation, but with a lot of sweetness. “This book doesn’t save, it doesn’t heal, but it comforts,” he admits.
As a counterpoint to her seismic experience, her story opens the Hollywood story of Temple Grandin. Autistic, born in Boston in 1947, he has become a world authority on animal science over the years. She is portrayed on screen by Claire Danes Grand Cathedraldirected by Mick Jackson for HBO, an acclaimed TV movie as soon as it aired in 2010.
There are approximately 700,000 autistic people in France, of which 350,000 do not speak, like Paul. Shocking, the storyA child without a story as humble and intimate as it is universal. Minh also decries France’s backwardness compared to its European and American neighbors and defends the behavioral approach and its results. Interview at his home after going over the landing The art of war, by Sun Tzu, and upon entering discovered Paul’s trampoline and swing. The holiday is set.
Miss Figaro. – How was this book born?
Minh Tran Hui. – I wrote it for lack of anything better. When Paul was born, and especially when he was diagnosed with autism, I didn’t think about it at all. At the time I was very busy training myself as well as my husband and finding the professionals who were going to take care of him. When we understood where the autism situation was in France, we contacted a speech therapist who gave us the address of Ediformation, where parents can register for less than professionals. We also followed the training of the Hospital Robert-Debray and Creiff (Autism Resource Center Ile-de-France). We also learned about the latest science-based approaches that were found to be not universally applicable. We did everything… The professional’s first word was guilt-inducing, recommending that I do parent-child psychotherapy on my own. This is where I started doing research. The idea for the book came later, prompted by friends, and despite the difficulty of turning this suffering into an aesthetic object, it stopped seeming shameful or obscene to me when we began to lose hope. What was untold then became a chronicle woven in opposition to Temple Grandin’s success story, which is everything Paul is not. It’s over in five months, it’s my tank side, I start slowly, then I go forward.
Faced with such difficulties, most couples break up
Minh Tran Hui
How do you overcome such an ordeal? How do you hold on between hope and sorrow in the hell of this clip?
Many people tell us about our extraordinary courage, but it is not about bravery; it falls on you and we go ahead, we go with it, without this other way out… If we collapse, what would happen Paul? Facing such difficulties, most couples break up, and it was very difficult for us too. We have been on the verge of separation many times, like pinball. It has both united and divided us. So we must love each other very deeply because we would not stay together just for Paul. And the unexpected arrival of our second son, Serge, two years ago (whom his older brother is carrying with difficulty today) strengthened our family.
We feel the resilience…
Usually! Without repeating the usual “what doesn’t kill you makes you stronger”, it helps to make sense of things, even if it’s never been clear. Now it is a little more that we have accepted Paul’s view of evolution; he will never grow much. Paul doesn’t talk, and I think he has the attention span of a goldfish. he forgets everything, he cannot stay in front of a five-minute cartoon, it is too long for him. It communicates through a picture exchange system (US PECS system, Picture sharing communication system), which all children should have. And yet, not all speech therapists are trained in this.
How to improve the situation of autistic children in France today?
In France, we are two generations behind. The predominance of French psychoanalysis (we have the most psychoanalysts per capita in the world), which links autism to psychological trauma, often related to the mother, slows the progress of behavioral practice from the United States to Europe. Behavioral therapy helps young children learn basic skills such as pointing, responding to their name, and learning to obey simple commands; they are taught it. Paul now obeys these instructions that he was taught, as I explain in the book. It’s long, tedious, repetitive, and based on a specific motivation: salty chips or candy for Paul. Radish for someone else…obeying a stop sign is just as important, if only on the street. Paul had to acquire all the behaviors of basic autonomy: eat alone, wash alone, be clean… But the case of Temple Grandin shows that extraordinary fulfillment is possible even when the vices are very serious.
There is no suitable place for autistics, and among the few that are, there are no trained staff, that is the nanny.
Minh Tran Hui
What will it take to get things moving?
Course: For all. For professionals (it doesn’t exist), teachers, carers and even the public so that everyone knows the difference between different disabilities. It was me, not my doctor, who discovered my son’s autism. Paul pointed, didn’t look me in the eye and didn’t answer his name. he wasn’t deaf, he was autistic. You have to learn how to talk to them with a few simple things. There is no suitable place for autistics, and among the few that are, there are no trained staff, that is the nanny. Paul can’t go to school, he doesn’t have any preschool skills, and he needs a special place. He studies at an IME (Institute of Medical Education) that practices ABA (Applied Behavior Analysis or applied behavior analysis, a program based on motivating a child to modify his behavior and help him learn, Editor’s Note). But for other less severely disabled children, only 20% are educated in France, while 100% are in Italy and 80% in England; we should follow the example of these neighboring countries. There is only one sector for ABA, in the north, which trains about thirty people a year… Since the existing facilities are not sufficient, everyone goes to Belgium, where it is cheaper. Social Security moves thousands of families across the border and pays for everything. However, sometimes one or two people are enough to make things happen, even if it is society’s choice.
autisminfoservice.fr:
Source: Le Figaro
