Category Archives: attitude

Autism in France

The post you will read by guest bloggers, Laurence Le Blet and Karen Hatungimana, and a linked essay by Nicolas Joncour, are about the situation for nonverbal autistic people in France currently. I was unpleasantly surprised to learn how behind France is in educating people who have autism or in supporting children and families. I have many complaints about the system here in my own community but I know that I have been very lucky too. While an unwelcoming school or an incompetent aide has been part of my experience and has negatively impacted me, it has not been my entire experience. The opportunities I have been given to get a normal education, to have a trained aide with me in school, to have the chance to get a college degree and even to become an advocate for people with autism has been a blessing I cannot take for granted. It is time to change the paradigm about autism in France.

“The Right to an Education”, Article Typed by Non-Verbal Autistic Piano Student with Dyspraxia


Guest Post

by Laurence Le Blet and Karen Hatungimana

The situation in France for autistic people has progressed very little for many years. The professional orientation of case-managing organizations, medical-social institutions and specialist doctors is still largely psychoanalytic. The National Health Authority, (HAS), does not recommend psychoanalysis, and specifically condemns the “ le packing” treatment (in which a patient, wearing only underclothes, or naked in the case of small children, is wrapped in towels and soaked in cold water for the stated goal of enabling the child to rid himself of “pathological defense mechanisms.”

Image result for le packing autism

Despite these recommendations, these treatments remain widely present and the national institutions have not caught up with new recommendations for autism treatment. These archaic and outmoded approaches are found in all institutions: justice, health, schools and in society in general. In fact, societal ignorance regarding autism is so pervasive that reports made on parents and subsequent social placements are many; children are always at risk of being removed from their parents custody.

Although autism has been officially recognized as a disability since 1996, the training of nurses and special educators is still mostly based on psychoanalysis and autism is widely seen as a psychosis. Consequently, children with autism are not encouraged to attend regular schools with their same age peers. Despite the legislative Act of 11 February 2005 on Equal Rights and Opportunities, Participation and Citizenship of Persons with Disabilities, the educational situation for autistic children has barely changed. Only 20% of autistic people are enrolled in regular schools, mostly not full time, and parents have to fight for their children to be and remain in ordinary primary school. Most autistic kids are referred to medical educational institutes or day care hospitals at a very early age (from kindergarten), where the right to schooling and the ability to participate in society is limited. Medical-educational institutes and day hospitals are supervised by the Ministry of Social Affairs and the Ministry of Health )

Another factor negatively affecting the ability of autistic children to attend regular school is due to the fact that many children do not have the necessary trained support. Children may wait a long time to obtain a personal assistant and until then, must remain at home. However, many assistants are not adequately trained nor do they have a good understanding about autism. Additionally, most schoolteachers believe that students with autism suffer when they attend a regular school and they believe the child should be removed from the school and referred to specialized institutions. When parents are not well informed of their child’s potential to learn, as well as their basic rights, (and most of the parents are not), they are pressured to enroll their kids in medical-social institutes. Those parents who believe in their kid’s potential and capabilities are accused of making their child suffer in a regular school, or are told that his presence in a regular school makes the teacher and other students suffer. Thus inclusion is strongly discouraged. There have been a few lawsuits by parents, however this is rare.

There is a lack of understanding of integration and inclusion concepts. Parents of children with autism who strive for inclusion have to overcome innumerable obstacles including: delayed or obsolete diagnosis, absence of proper care advice, fighting for financial support, and most significantly, the permanent anxiety of the psychiatric hospitalization of their children after their death because nobody would be there anymore to fight for them.

The Committee on the Rights of the Child (UNO) has issued its conclusions on the implementation of the Convention on the Rights of the Child.

Here is an excerpt:

The Committee urges the State party to take immediate steps to ensure that the rights of children with autism, , And that these programs are in conformity with the recommendations of the High Authority are authorized and reimbursed. The State party should also ensure that children with autism are not subjected to forced institutionalization or administrative placement and that the parents are no longer subjected to reprisals when refusing the institutionalization of their children. “

In France, despite there being laws and recommendations for good autism treatment, most are not widely known and they are not consistently implemented throughout society. Money that is designated to medical-social institutions would be better applied to education. Inclusion should be effective throughout the entire life of a person with autism.

France ‘s motto « liberté , egalité , fraternité »  should be for all.

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The Courage to Hear, to Learn, to Change

Guts means the courage to change. My book, my speeches, and my efforts have challenged people who have gotten accustomed to seeing severe autism in a traditional way. We need rudimentary lessons. We need drills to learn words, understand emotions, recognize the people in our lives, notice gender. We need baby talk because we don’t understand English or speech. We need M&Ms because we have no motivation. It is an illusion to imagine we can be more.
So, I am honored and amazed when parents and educators write to me that my explanations changed this thinking after years of seeing it one way. One person said it “hit him like an anvil on the head.” One described how he was, “shaken to the core.” One mom wrote a long letter about how she had always believed that the potential for her son to type was “delusional,” but after reading my book she understood how he could be smart but trapped internally. Now she types with him freely. He is 20 and finally able to communicate his ideas and finally is seen as intelligent. Brave moms, Brave dads, because they now have to face systems that have to look at why their methods could not see this possibility in the person with autism.
“I now speak normally with my son and it has changed everything,” I hear over and over. “I see my students differently,” I hear as well. One brave teacher wrote that she now wonders if she has been going at it wrong for decades. Kudos to them for thinking openly. It is guts.
I will tell you one lady with guts is my old teacher from when I was small. I write in my book how I loved her in spite of my frustration and boredom in her class due to babyish lessons and repetition. Fate has plans and recently my mom ran into her many times after years of no contact. After several weeks she told my mom she would like to read my book. I knew it would be painful for her because I talk about her- not by name, but she would know. I wrote her a note. After reading my book she came to my mom with a letter for me. She wrote that she tried to read it through my eyes. She was powerfully impacted and was determined to teach differently, to see her students differently too. She has been teaching a long time. This is guts and I admire her.

Accepting Autism

In some ways I’m getting used to autism but I can’t get too used to it or I won’t get better. I have to strike a balance between the need to accept myself the way I am and the need to not accept myself the way I am, so I can keep fighting to improve. Not easy to find that middle spot.

My New School

My high school is a really nice place. The change between my current school and my old school is huge. Last semester I felt miserable. I knew the school did not want me there. They never lifted a finger to be kind or help me feel easy or relaxed. It was so stressful it is hard to describe.  I won’t go into details, but the administration was really making my life intolerable when all I wanted to do was access a normal education.
The fact is being disabled is hard enough without being rejected or made to feel awful about a disability you can’t get rid of. So the difference between that kind of environment and my current school is striking. The administration is kind and happy to have me there. The teachers really are respectful of me and nice to my aide. My stomach is not nauseous when I go to school now. I feel at home, so now I can just learn like everyone else.
My realization is that the attitude of the administration is incredibly important to a school’s culture. For some reason, my old school has a better reputation and is thought of as a better school out in the community. I know I’m in Honors classes so I am around the most motivated students, but my observation is that it isn’t better in instruction, friendliness, or student behavior. It is better at hassling disabled students though, and does have a reputation for that. The new school is like a hidden school because everyone wants to get their kids in the other one and I think this one is much better. Irony, for sure.

A Great Change

Every morning when I go to school I feel good now. This is like a real blessing because for five months every morning I felt like vomiting before school. I was frightened I might have to spend four years in that tension. Thank God my mom found a woman who helped me transfer into my new school. It was looking like it might not happen and it was scary because I was so miserable in my old school. This counselor did the necessary paperwork and I got in. I am so grateful to her for this. Now I have an opportunity to just learn. My school is smaller and mellower than before. The kids are more respectful of the teachers in class, and my classes are good. The great thing is the school works with my parents to make it succeed for me. They cooperate, meet, discuss, and they are nice too. I had this in middle school and again now, but for the first semester of high school I had the opposite. I can’t understand the reason they were so hostile there. The team really didn’t seem to want things to work out. It is not clear to me why they had attitudes like this. I have to say I get a smile each time I drive by that school now and know I will never go there again. I thank all the folks who made this possible.

Thickening My Skin

I have to aim high in life. I am the same person inside I would be if I didn’t have autism. If I didn’t have autism I’d be interested in a career, an independent life, and friends. I still have these goals. School is now feeling somewhat goal oriented. What I mean is, high school is necessary to do what I want in life. My goal is to get a college education and to work after that in education and autism, so high school is a step toward all that.

My high school is forcing me to toughen up. In the beginning I was miserable because I suspected I was not welcome. I have come to the conclusion that I really don’t need to be welcome in order to succeed. Why should I worry if everyone likes me in the school or not? The truth is, I am a really visible presence because I am so different. I am somehow learning not to be a sensitive guy about this. If I am to face the whole world of special educators I better get a thick skin.

I wrote recently about how irritated I was by a woman who was shocked I understood English fluently even after I presented to an audience. To her credit she grew and learned from our interaction. That was wonderful and I give her credit for opening her mind. I was interviewed recently by medical students who were surprised to find a bright mind behind my symptoms. They were kind and open-minded and the professor told me they learned to not judge a book by its cover. Since my cover is Autismland I know some people can’t see what is inside, but that is not my limitation. It’s theirs.

The reality is that differences scare people. It isn’t just autism. It can be physical, or cultural, or whatever. In any case, the odd man out is either welcomed by people or treated in a cold and rejecting manner. I have to realize it is individuals who are reacting to me in the best way they understand. When people have pre-judgments I must grow in my maturity. The saying is, “from adversity we get strength”, so I will try to do that.

The Benefit of the Doubt

Sometimes I read about other people and their challenges. It often gives me hope. This is a quote from Gabrielle Giffords new book about her brain trauma and rehabilitation.

“In the first weeks after Gabby was injured, she couldn’t say anything at all, which left her terribly scared. She felt trapped inside herself. By mid-February, Gabby had begun formulating words, but they were often delivered haltingly or incorrectly. Her speech therapist handed her a photo of a chair and asked her what she was looking at.
“Spoon,” Gabby said. “Spoon.”
When shown a lamp, Gabby said, “cheeseburger.”
She also got stuck on random words. No matter what she meant to say, the same word, “chicken,” often came out in a burst: “Chicken, chicken, chicken.”
For Gabby it was almost unbearably frustrating.”

Oh, does this ever sound familiar. It is interesting how Gabrielle Giffords got the benefit of the doubt. Pretty soon she got better too, so she is extremely fortunate. In autism we kind of live there all our lives. Each neurological challenge is different, but autism does not get the benefit of the doubt. People assume we get the word wrong because we don’t know the word. It isn’t true in my case. Is it possible in others? What do you think? Do autistic people deserve the benefit of the doubt too?

Struggling Against Attitude

I live a surreal life in Autismland. I work so hard and I struggle all day to manage daily in school. Still, I struggle to be welcomed. I push against the door to be let in to have a decent education, but I get in and find I’m still stuck outside. What do I mean? I mean it’s not easy to struggle against attitude. Maybe I need to develop a sense of humor about it. Maybe I’m too sensitive for my own good.

I gave a talk yesterday. A lot of my writings were read. In the Question and Answers at the end a nice lady asked if I really understood everything. Then after she was told yes, she incredulously repeated, “Everything?” The funny thing is, if I write smart ideas I must understand English, right? In the moment I felt mad, I must admit, but now I don’t. I believe she expressed the doubt of many, actually, especially if she is a special educator or something like that. I’m sure I don’t fit the model that people expect for a limited-verbal, hand-flapping oddball. Ha ha. I laugh at myself too.

I have to assume that I kind of challenge assumptions about autistic people. I have to prove to people over and over that I really am communicating. They stand next to me, or behind me, or near me, and watch me type or point on the letter board. They find I move my own arm, react to their questions, and communicate for real. How many people have I done this for? OMG, it seems like thousands, but it is only dozens and dozens and dozens and dozens…

They are professionals, and parents, and friends of my parents, and I have to prove myself to everyone so they know I am smart. I get it and I accept it. Maybe I need to get a movie of me typing we can put it on an i-phone and show them. Then I won’t have to be observed like that. On the other hand, it is fun to see their skepticism vanish. I have sat with medical doctors, neuro-scientists, psychologists, and skeptics of all kinds. After a few minutes they stop doubting and I can relax. I suppose I need to laugh, but it’s the people who assume I don’t communicate or don’t do my own work that bug me most of all.
OK, that’s my rant for today.