Disability – When we say “autism,” most people think of Asperger’s disease. This is the mildest and best known form of the disorder. But there are other forms of autism that are more severe, less known, and less supported.
When my little brother Lillian’s diagnosis dropped -8 on a scale of 10, it felt weird. I knew absolutely nothing about autism. I didn’t even know there were different degrees of “severity”. Even after all this time, you will never get used to it. I only see Lillian five times a year. However, I suffer from it too, as do everyone around it.
Today, Lillian is 9 years old, but he does not speak. The age to speak is long gone. At this point, it would be a miracle for him to speak.
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Does not understand what is wrong
At nine years old, he still wears diapers. Sometimes he takes them at all hours of the day, or doesn’t want to re-wear them. My parents told me that one night he had a fit and took off his diaper. He smeared the entire bedding and put his fingers full of excrement in his mouth. My parents were helpless. Why are you telling him he shouldn’t do this? He does not understand that it is wrong.
And here’s the problem: Autism prevents him from having a “normal” life, from growing “normally,” from going out or even having a simple conversation with us. Impotence is an important word and very much represents my view on the issue. How many times have I seen Lillian wear awful fits, pull her hair, or get angry in the arms of my father and stepmother? How many times when I saw the pain in my brother’s eyes and the pain of the seizure, I felt sad and helpless?
People are afraid of my brother
When someone is different in our surroundings, it is unfortunately very common to hear criticism. People do not understand and are afraid sometimes. Once we went shopping with my mother-in-law and little brother. There were a lot of people in the convenience store and Lillian was quiet half the time.
When he reached the exit, he got impatient and threw a fit. He started crying, started pulling his hair and wanted to leave. We were handicapped out. A gentleman behind us said: ″No, but no education really, what’s wrong with him starting to scream like that?My mother-in-law looked at him and said: ″ He is autistic.
Here is another example of ignorance of people’s outlook and their lack of empathy. We went as a family to run a race at Bricomarché. My other brother, Arthur, had seen a rather expensive glass motorcycle. He wanted to play with it, but the parents took it from him. Lillian, in turn, took the motorcycle. But removing it will not be so easy. The bout started in the middle of the store. When Arthur saw his brother crying, he started to cry too. My father took them with him.
As he was leaving, under the darkened or terrifying gaze of people of a “normal” life, a woman entered the store with her shopping cart and a pink hat. She saw my father with two children crying in his arms and cried: “Oh my God, why are these kids screaming? They are loud! Shut them up! “
The cashier looked at us badly and said: “But you understand, people are afraid.” As if she wanted to add a layer. It was really one sentence too many. My mother-in-law replied angrily: “Fear of what? Is it contagious?”
lack of support…
The hardest thing is being constantly judged by strangers who really don’t want to be understood. What is the facade? Nothing will help them…
When I meet these introverted people, I like to invite them to spend a week with us. There are many people who could benefit from it. They understand how difficult this is for everyone.
I am proud of my little brother, who he is and the efforts he puts in, no matter how small. I try to fight the looks of others while still being proud. In a way, I am happy to understand autism, to know how to “manage” it, and to be more mature in the subject.
“The hardest thing is being constantly judged by strangers who don’t want to understand. What benefit would anything bring them…”
…even the doctors
My brother goes to IME (Institute of Medicine Education), which receives people with mental or physical disabilities. He goes there by taxi every day, except Wednesday. It was a horror to get a seat. There is a huge lack of places in the IME, and the waiting time is long. “Okay, sorry ma’am, but you have to wait.” Wait how long wait what? miracle? Something bad going on? Come and live at home while you wait, and we’ll see if you hold up.
They dare to go out into families to wait while according to faire-face.fr (a disability information site), there are 30,000-47,000 places in the IME short for everyone who needs them to have answers. adaptation.
Since switching to the IME, Lillian seems to be working fine. Anyway, he seems to be having a lot of fun there. He rides horses and eats different dishes than he eats at home. There are two teachers with him. It’s hard to think that it takes two people to manage my brother.
There is also the famous: “No, but you understand, we can’t do anything now, because it’s a week off and we need a vacation.” While we hardly went on vacation for eight years. Do you think autism will stop to allow us to take a vacation? We’re deprived of vacations and all outings, and you dare tell us that kind of thing?
And if I were you?
Care should really be respected where it is expected. In institutions provided for this purpose, but also in schools. The problem is that there is a shortage of School Life Aides (AVS), a profession that is not really well known, yet very useful and in demand. All children have the right to education, even with a disability.
Of course, not everything has to be discarded. There are many understanding people who accept and deal with or empathize with difference. Already this, it brings a lot. I am grateful to those people who speak on our behalf, understand and accept us.
Unfortunately, the majority of people react as described above. They are afraid of autism and do not want to understand or accept difference. I ask these people a question: How would you react if it was a member of your immediate family? your brother? your sister?
This publication comes from writing workshops led by ZEP (Zone d’Expression Prioritaire), a media outlet for expression support for young people aged 15-25 who testify about their daily lives and all the news of their interest.
See also on The HuffPost: “Horse Standards”, a film about autism