After 7000 km, a summary

 

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The first half is over. Cato and I travelled 7,000 kilometres in three months looking for ideas, projects and initiatives that make a difference in the lives of people with autism.

We were in Belgium, France, Spain, Portugal and Great Britain. And then to Scotland for some holidays and some writing. Ooh, Pennan... it is verrry steep there', the Scots say. They can't fool me anymore. Slopes of 40 degrees with hairpin bends and oncoming traffic, I don't care anymore. It was wonderful, with the sea at our feet, like a ship at anchor. Then the real work. By boat to IJmuiden and on to Kiel, on board the Luciana with Pieter.

The freedom on board of a ship, nothing beats it for me. Cast off and set sail. The world is gone for a while. I can recommend it to everyone.

My children grew up on this ship. I told them about it. They still like to go on it. They have fond memories of their childhood. Schools are not the places they remember with pleasure. They are mostly happy that it is over and try to forget frustrations and bullying. They remember with disgust the white rooms with specialists who wanted to know everything about them and thought everything about them. Why can't it ever just be right?" my eldest son once cried out beside me in the car on the way to yet another test. It has never brought us anything but frustration. No school has acted differently because another report worth a few thousand euros was produced by some institution. My sons went through junior high school, senior high school and college on their own merits. In spite of all the investigations, all the doubts of the schools and the extremely expensive diagnoses.

At sea, it didn't bother us. As soon as we left the piers, the sea breeze blew everything away and for a few months we could just be ourselves. What a relief!




No, this may not be for everyone, we happen to work in this sector and not everyone will like it that your house is always leaning over and everything slides off the table, but I do wish everyone the same feeling of freedom. The freedom to enjoy. Every child the freedom to play and discover.
              


European countries have promised to work towards an inclusive society and inclusive education. Countries have to show how. The European Agency for Special Needs and Inclusive Education takes stock of the measures taken by the member states. On the website EASNIE you can read the reports of each country about how they do this. It doesn't say very much. You only have to read the Netherlands' contribution and you understand what time it is. On paper it is all wonderful. Nobody will honestly write that in the current school system inclusive education is actually impossible.

An inclusive society. What on earth is that? What do we mean by it? Political slogans. Countries have to make policies so that people with disabilities have opportunities to participate. Meanwhile, society marches on at a rapid pace. Where do we want to belong? Do we expect people with autism to run as fast as the rest with expensive help? Or do we want companies to invent quiet things to keep people with autism busy and should we be grateful for that?

What are we doing here on this world? Why do I like my life? Did anyone ever say to me: 'Here, you are going to learn how to sweep and then you can go and help in the barber shop. There is nothing else for you. No. I was expected to make my own life. And why does that work reasonably well? Because I was allowed to choose.

Freedom is our greatest good. For every human being, for every citizen living under the rule of law. The right to one's own personality, one's own individual choices, a full life that is not determined by others, these are things that are still as unattainable for a large group of people today as they were a hundred years ago.

People with autism are born with this handicap. It is as real as being blind. It is just much harder to understand.
The life of a child who is born blind will be dominated by the disability from the very beginning. He will be helped from the very beginning to cope with the enormous disability that will hinder him all his life. He will be assured of lifelong support, so that he can live freely.
This does not apply to a child with autism born in the Netherlands. The handicap is ignored as much as possible or blamed on the child and its parents. There is no lifelong support, no security for education, work or living. No understanding and no recognition. Someone with autism is discriminated against worse than all minorities put together. They have no voice, no lobby, no sympathy. People with autism have no rights and hardly any opportunities. If someone with autism fails at school he is punished. After all, Europe's mission is an inclusive society. And that translates into coercion.

How is it in other countries? Is it the same there? I needed a broader view and new insights. To take my mind off things. Cato needed distraction. Travelling together with a purpose. Who were we going to visit? I did not know when I left. I would be guided by the people I met, autism organisations, or the route, or I don't know. Google...

On my journey, I found wonderful institutes, all but one of which were founded by parents in the 1970s. La Bourguette in the south of France, La Garriga near Barcelona, O Pelouro in the far west of Spain, Gautena in San Sebastian and the Doucecroft school in the east of Great Britain. Institutes with more than forty years of experience. I found the same conviction everywhere: people with autism should not be drilled and trained. These people are entitled to their own personality, their individuality, to free development, just like any other human being. A person with autism, like any person with a disability, deserves a free life, understanding, respect and lifelong support.
But strangely enough, these institutes with their many years of experience have not been able to achieve a broad influence, to grow into something that is common throughout Europe.

The commitment of the parents in the 1970s has not been allowed to grow along with the modernising society. Quite the opposite. And that is a great pity. You would expect that our wealthy society that claims to be so civilised would also allow the opportunities for people with autistic disabilities to flourish, but modernisation has actually caused these people to become even more isolated.

A division has arisen between severely multiply handicapped people with autism and 'ordinary people' - just call them that - with autism. The former live in institutions where they receive all the care they need. The latter have no right to exist.

In Belgium, I visited the VVA, the Flemish association for autism, I spoke to a French-speaking Belgian mother and I had a Zoom interview with a school director.

Belgium was always seen by the Netherlands as the place where it was all devised. In Belgium they know a lot about autism so it will be well organised there, everyone thinks. Unfortunately, that is not the case. In Belgium it is just as difficult as in the Netherlands to find a suitable place at a school that your child with autism will enjoy attending. Belgium does have a number of provisions in the law that we do not have, which can be helpful. For example, in Belgium you can adapt the curriculum at secondary school and you can also study at an adapted curriculum and pace. Belgium does not have a central written exam. Schools decide for themselves when a pupil has passed. Schools therefore have the freedom to make education suitable for someone with a developmental disability. But schools must also deliver at a high level.
In Belgium, home education is allowed. However, this is subject to rules.
It is difficult to determine how many children receive home education because they really chose to and how many because there was no alternative. How can parents ensure that their home schooled children also meet other children? At the VVA, I met several parents who told me that there was no suitable place at school for their child. In Belgium, too, despair is great. One Belgian mother even moved because she finally found a school in Spain that proved suitable for her son (see posts July Centre Le Bambou and O Pelouro). Françoise Hanoul wants to create a place just across the border in Portugal for her son and other people with autism disabilities where the door does not close. Where they can live in freedom. She has not been able to find that in Belgium.


In France schools have ULIS classes. These are special classes for four to five pupils attached to a regular school. In Navarra Spain, they started such special classes twenty-five years ago. The aim is to bring children into contact with each other. In France, I was told, the children in such a class must be able to cope with a certain level. There are far too few of these classes. That is what the figures show. Often, different handicaps are mixed up or children who have to integrate are placed there. It depends on the school how they organise it. I spoke to the chairperson of Autism Aube, Petra Schloss. Her child had a wonderful time at a regular primary school, but afterwards she chose to homeschool.

In France there are also regular primary schools with very specialised classes for children with serious problems. All kinds of specialists are attached to such classes. In France, I was told that the policy is aimed at training children so that they can participate. That sounds like the Netherlands. I did get the impression that a serious team of specialists is involved in the special classes and the ULIS classes.
Training children to be able to join in, to be allowed to do so, to be like the rest... It is a denial of individuality.

In the South of France I visited a beautiful institute, La Bourguette, which provides housing and education for children with autism. The education is focused on the freedom of the individual. There is a lot of personal attention. The classes are small. This institute also makes an effort to let the adult pupils gain experience at local companies through internships. La Bourguette also has a very successful inn that is run by its own residents and/or former pupils. They grow fresh vegetables themselves. La Bourguette was set up in the 1970s by parents. It has grown throughout France as an example.

Spain is divided into 17 regions, all of which do things differently and all of which count and register differently. There are no figures that say anything about the whole of Spain. A study showed that the number of children diagnosed with autism in Spain is far below average (according to a recent American study, 1.6% of all school-age children have some form of autism). Spain says it has no home-sitters. All children should go to school and do go to school is the message there. In the regions I visited, Catalonia and Navarra, children with developmental problems are in special classes in regular schools. The aim is to let children grow up together. In San Sebastian, there is an institute (Gautena) that offers life-long care and education to people with autism. It runs a school with 21 classes. These classes are located in 21 different regular schools. Gautena also provides housing, day care, outpatient counselling, research and treatment. Gautena tries to let the people they accompany and take care of participate in society as much as possible by having activities, such as sports and musical and creative education, take place at regular clubs.
The residents of Gautena are all severely multiple handicapped. Ordinary people' with autism continue to live at home with their parents.
Gautena was also set up in the 1970s by parents.

In Spain, in the region of Pontevedra, I visited a truly inclusive school with a very special status. O Pelouro. This school has no special classes, in fact there are no classes at all. Children all work on their own individual development. All children are welcome. The school offers a challenging and inspiring environment. Incidentally, it is not the case that anything goes at this school. Children are educated and undesirable behaviour is corrected. But on the other hand, the typical 'undesirable' behaviour that you sometimes see in children with autism does not occur, because there is no training and coercion.
O Pelouro was founded in the 1970s by a young couple. Teresa Ubeira (educationalist) and Juan Llauder (child neuropsychiatrist).


In Colchester, Great Britain, I visited a very special school. This school is only for children with autism and therefore not inclusive. However, the space and freedom there feels like a real benefit. There is a lot of individual attention and a lot on offer.
The school makes an effort to introduce the children to society through activities outside the school.
Parents have to fight a great battle before their child is eligible for this school.
The school is part of Autism Anglia. This organisation was set up in the 1970s by parents.



What is the humane solution in our luxurious society and modern means? Everything feels like trickery. We do it a bit like this but there are many buts. Those children are allowed and those are not. If you are very handicapped, we have a nice institute for you. If you're just autistic, you have to learn to manage on your own, or stay with your parents, go to school or stay at home.
What happens to you after school? Have you been able to make a choice about your future? Have you been allowed to dream of a nice life?
Go and ask the government, please. Go and ask the people with autism. I challenge you.

Autism does not exist in government policy, not really. It is an inconvenient side issue. It is something to be unlearned.

I am still on board the Luciana for a fortnight before I start on the second part of my journey. In the coming weeks, I will try to summarise the experiences of the past months in an idea. What would I wish for our children so far? What should a school look like where all children can learn, can learn everything, get the right education (what is that?). And after that? To be allowed to live in freedom... to participate on your own terms... How? It's nice to think about, to dream about ...

And then Scandinavia, Estonia and Germany will follow. I am curious! 22 August the second part of the journey will start.