The Ability to Communicate Creates Autism Advocates

In this video is a friend I have mentioned in previous essays. He has also posted here as a guest author. He is a few years younger than me and we have known each other many years. Our moms are friends and talk to each other about autism (what else?). His name is Dillan Barmache.

Dillan is going to my old high school and he is going to graduate with a diploma in a year. Then he will take on the world.

He has been infected by the same bug I have been — a need to educate and change the way professionals look at our type of autism. I am proud to share his presentation at Stanford University to medical professionals.

His message is identical to mine. Open your minds. Let us out of our prisons.

I’m thrilled to see so many people with autism be heard, be advocates and educate.

Try

Life is hard and sometimes it hurts. It has unexpected hardships and daily challenges. It has joy too, made richer by overcoming the hardships.

This beautiful little clip shows all that. I think it has a great messsage we forget too often.

You’ve got to try.

The only thing that’s in my way is me.

 

1- My New Book

I am a bit ashamed to realize that I haven’t written anything in my blog since January. To be fair to myself, I have been writing another book. I have finally completed my first draft and hopefully soon I can let you know more about it. I think this book will be more accessible for people who know nothing about autism but it will also be interesting for those who live it every day.

Writing a book is a big undertaking. My typing is slow but I eventually complete what I start. I am eager to let you know more about it and will in the near future. I thank you all for your support and patience with my long silences over the last two years.

The Brain that Changes Itself

I watched an intriguing documentary available on Amazon Prime called The Brain that Changes Itself. It is a film based on a book by the same name written by Norman Doidge. I recommend both. They address the developing area of study in neurology of neuroplasticity. This is an important development because for too long scientists have assumed that the brain was fixed in its wiring and that certain conditions were permanent. The film shows how some innovative neuro-scientists have discovered that this is not the case. They show how, with the proper training, some people with severe challenges have literally rewired their neural pathways  and overcome incredible things. They call this neuroplasticity because the person’s brain developed new neural pathways when those pathways biologically intended for a particular function were damaged beyond use. This alternate neural highway gained in competence and ultimately adapted to function normally. One scientist compared it to being stuck in traffic on the main highway, not moving, or taking an alternate side route that, slow at first,ultimately developed over time into a new super highway.

One scientist described his belief that autism is caused by an excess of neuroplasticity. He works at trying to reduce the overload of information that enters the brain of people with autism and creates in them behavioral loops. I found the film fascinating and hopeful because it emphasizes that the brain remains plastic throughout adulthood. I encourage you to watch it. I’m interested in your impressions.

 

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.”

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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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Helping the Do-Gooders

 

Twice recently when I have been out grocery shopping with my dad, while waiting to pay the cashier, he, not me,  has been approached by a do-gooder who tells him that she has a program for people like me. He says thanks, but no thanks.

They tell him it is good to get me out in the community like this and they talk to him as if I’m not there and not understanding the conversation. He tries to escape quickly, for both our sakes.

They mean well. I get that, but they occupy the traditional, patronizing, benevolent model of disabled outreach and education. They must rescue me.

No thanks, ladies.

Do they walk up to a guy in a wheelchair, ignore him, and tell his companion they have a program for him and how great they are for bringing him into the community? That would be pretty funny if they wanted a lawsuit, but lucky for them, I’m not speaking and that gives them the freedom to assume I’m just like all their other charges– which may actually be true, just not in the way they think.

 

I am Writing a New Book

If you are wondering why I haven’t posted much recently it is because I am working on a new book. I am very excited about this one. I will keep you posted as it develops.

Other exciting news is that Ido in Autismland is now available in Japanese!

Here is a link to the webpage for those who read Japanese.

http://www.asukashinsha.co.jp/book/b244650.html

More on Autism and Exercising

I have received a lot of questions about exercise and autism since my last post. From my own experience, when I was small one of my OTs looked at me and remarked that I had low muscle tone like most people with autism. She then did nothing to work on fitness. She loved the swings, however, like most of my OTs to vestibular and propriocept me.

In school my APE teacher followed a routine I believe must have been designed for a different motor disorder than mine. The movements were too hard for me to motor plan at the time which led to frustration.

Most people don’t imagine that people like me have the potential to be fit. I know it’s possible. It takes longer than a normal motor system to improve but it can still improve. It can be hard at first, so persistence through resistance is essential. You have to be aware of real challenges like motor planning, muscle and tendon tightness and other issues common with autism that can interfere with success. For example, bilateral movements, moving arms and legs simultaneously in an exercise, and transitioning movements can be really hard for some people and frustrating until more motor control is achieved. People make a lot of adaptations to compensate for the motor difficulties. For example, if jumping sideways is hard to plan, a person might consistently turn forwards. You can build up to the skill incrementally in many ways, such as stepping sideways at first, stretching the hips and working on jumping in general. If someone can jump forward with ease but takes many seconds to jump sideways or backwards, you are likely looking at motor planning challenges which can improve with practice.

The goal is to make moving fun as well as a key to emotional balance and fitness.

Good luck!

Autism Exercises

Exercise helps me in every way. When I was young I suffered daily from having a mind that couldn’t control my body well. It made it hard for people to realize I was intelligent. I have worked for years on improving this skill and continue to do so. One of the ways I do this is through exercise.

I believe exercise is incredibly important in helping people with autism. I use exercise often to help me control my feelings or my energy level. Of course, it also helps me to have better mind/motor communication, better motor planning, better fitness and even to participate in certain physical activities or sports I never could do before.

I exercise in a variety of ways including hiking, bicycling, riding a scooter, jogging on a treadmill, swings and trampolines, as well as working out with  trainers.

I share below a few short film clips of me working out as well as a photo of me sawing a tree branch on a two-man saw with my dad.

Parents: Don’t be afraid if your kid isn’t fit yet or even into moving. It took me a long time to get to this point. You can build up the skills and interest over time by starting slowly but making it a part of the regular routine. It’s so worth it!

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Autism Cooks

ido_cooking_4I have written previously about my love of cooking. Cooking has given me a lot, and I’m not just referring to the food.

I have to remember instructions in recipes (multi-step planning, for all you OTs out there). I have ido_cooking_3to search for and retrieve ingredients, utensils and cooking tools. This is important for people who have autism.

I have to handle sharp objects and hot objects. I am aware of personal safety.

I have to control impulses and not eat unfinished food (especially cookie dough).

I have to work on fine motor skills in chopping, pouring and measuring.

I have to be patient, plan, anticipate and multi-task.

I have to be present while it cooks.

I learn self-help skills washing up.

All in all, it’s an “OT session”ido_cooking_2 I can have fun with since I’m actually doing something meaningful.

Bon Apetit!ido_cooking_1