Spain, Autisme La Garriga

 Reading tine: 10 minutes

 

Spain, holiday country. We have not been here very often but still, a few times with the children when they were small.

Going on holiday with a little girl with severe autism is a challenge. At home in your own environment, you involuntarily try to avoid awkward situations. You don't unexpectedly call out to your autistic four-year-old daughter: 'Get your coat on, we have to go to the supermarket because mama forgot something'. Or: 'Come on, let's go to the park because the weather is so nice'. No, these are activities that require preparation, for which you need to gather courage and from which you return home exhausted: We did it! Okay, in the second shop it went wrong and it took me half an hour to get her out of the shop and into the car while all those people were staring at me. And in the playground she pushed a little boy on the wrong side of the slide and that father tapped his forehead, but we got out!

The swimming pool! That was really a place you didn't want to go. But swimming was the little girl's favourite pastime. So you go. At the swimming pool, I could be sure that after about half an hour, one or other parent would come up to me and would tell me harshly that I had to have my daughter examined. Because of course I thought that there was nothing wrong with her, but there was! There was! It has always amazed me that people who see my daughter for the first time think they know more than me, the mother who spends every day with her.

 

And then you go on holiday with the whole family. Don't you want to take your children to the beach, to a restaurant, to a souvenir shop, just like everyone else? In Spain, we were always able to do that (except for the souvenir shop, perhaps). Spaniards love children and in my experience have a special sensor for children who are a bit different. I remember that we were sitting on a terrace eating something. I was slightly nervous because Cato does not eat strange things. She didn't eat a lot of familiar things either, and having a nice meal together is not for her, especially not then, because she can't talk very well. We were having a nice chat and she was waiting for it to be over. I always thought it was torture for her.

For God's sake, let them have ordinary chips, I just thought. Then it would be fun for her too. And for goodness sake, no lettuce leaves on the plate.

The waiter came to our table, immediately zoomed in on Cato and took her by the hand to let her point out in the kitchen what she wanted to eat. We didn't explain anything, we don't speak Spanish, there is no label on Cato's forehead, but she was embraced and we sat relaxed and relieved on a terrace and enjoyed just being a family on holiday.

 

I was reminded of this when I was visiting the University of Salamanca (www.infoautisme.es). I asked a staff member there (originally Polish) whether Spain also has school-drop-outs. She could not imagine it, because the people who work in the schools will always try to prevent it, she said. They want to keep all the children there. And she made an embracing gesture.

 

The story about the visit to Salamanca will not appear until next week. But I wanted to mention it now because it is such a beautiful thought, I have experienced it myself, so I like to keep it in mind when I write about Spain.

 

There are no (reliable) figures on the situation in Spain regarding children with autism in schools.

Spain is divided into 17 regions with their own governments. All these regions determine to some extent how education is organised and how inclusive education is introduced. There are large differences in the way they work and the way they count.

In Spain, children have to go to school until the age of 16. In some regions, school starts at the age of two, in others three.

 

There are about 7.3 million school-age children in Spain. Diagnosis has lagged behind in Spain, but has been catching up enormously in recent years. Autism is a condition that, according to statistics, occurs in 1 to 1.5% of children. In Spain, the number is 0.6%. I read in a report by Confederación Autismo that the number of diagnoses has increased by 160% in recent years. Why? Spain also claims in official publications to have no school drop-out rate. All children in Spain are in school. 84% of the recognised SEN children (Special Needs in Education) are in a regular school. Where are the children who do not have a diagnosis but statistically have a developmental disorder?

 

And then I think of my holidays in Spain and consider that maybe they didn't need diagnoses here. Now there must be diagnoses, otherwise the figures will not be in line with the other European countries. The 1.5% of autistic children must come to light. Teachers have been instructed to look out for them.

 

It is just a reasoning. It can be different.

 

Countries have made agreements in Europe. Agreements about an inclusive society and inclusive education, but sometimes I wonder if the governments really care about the children. Is Europe aware of the consequences of the agreements? Will things be better for children and (young) people with developmental disabilities if people start examining them and determining what is wrong with them? Or will they perhaps be subordinated to a government policy that wants to get the numbers right?

 

I hope that in Spain, far fewer children are simply diagnosed because the teachers in the schools do not need it. Because in Spanish schools, they have much more time to embrace children. Something like that... I hope.

 

I will visit more people in Spain and I am going to ask…

 

Visit to a special organisation in Catalonia.

 

About 40 kilometres northeast of Barcelona lies La Garriga. This village is home to the Autisme La Garriga, which - besides a network of services - has been the safe home for 43 adults with autism for almost forty years.

 

The first association began its activities in Barcelona in 1976. Here, as in many places in Europe, the parents were the first to see the need to organise help for people with autism and their families. Even then, 46 years ago, it was realised that people with autism need lifelong help because the condition is permanent.

 

Autisme La Garriga was very active from the very beginning. They were co-founders of the Spanish and Catalan autism interest groups and the International Autism Association, Autism Europe, a platform with members from 30 different countries.

 

I am going to meet Francesc Cuxart, who has been a psychologist at this institute since the beginning. The instruction I received was that I had to report to the pink house.

When I arrive at the address, I have to search a bit, which is not strange as the grounds are large. At first I ring the bell at the wrong house: 'You have to go to the pink house', the voice in the speaker explains.

Ah yes, really pink, not white with pink decorations. And it is so. The house that I eventually ring the bell is really pink. Freshly painted. 

 

 

In a side room where I have to wait, there's a map on the wall. Several monumental old buildings are scattered around the grounds, a workshop, an indoor and outdoor swimming pool, a vegetable garden, two large houses where the adults with autism live and the pink house, where all kinds of non-residential facilities are located. 

 

 

 

Francesc invites me to go for a walk on the grounds, see the houses with him and talk in the meantime.

The people who live here are severely autistic and mentally disabled. Some residents have comorbid disorders. Francesc and I meet a whole group with two supervisors who are on their way to the swimming pool. Francesc tells me that they all love swimming. 'And it's so good for them, exercising in the water.' I agree. Cato can spend hours in the water. From the pool we walk to a building with a long empty space.

 

'Here people can walk around if they are restless.' Adjacent to this space are smaller classrooms where all sorts of activities take place. People are busy everywhere, in small groups with a supervisor. They are tinkering, cooking. There are looms with various techniques. On the other side of the elongated building, we go outside and find ourselves in front of yet another workshop. Here, old paper is turned into new paper. By hand. A caretaker stands stirring in a large bath filled with water and paper shreds. The production over the years is enormous. Francesc shows me the stock further on during the walk.

The business card Francesc gave me upon entering is printed on this paper.

 

We walk on and arrive at the vegetable gardens. Under large semicircular tents, beans, tomatoes, onions and so on are grown. All for their own use. 

Francesc explains: ‘We are not allowed to sell anything because the stay of the people here is paid by the state of Catalonia. If we make money from their work, the residents get less support.

 

At the same time Francesc explains that the funding from the state is not sufficient to finance all activities. Every year funds are requested. He shows me a beautiful therapeutic gymnasium, which was financed with the help of a fund from a bank.

The gym is important.

‘You have to keep activating and stimulating them,' Francesc explains, 'that's crucial.’

As I am writing this down, early in the morning, people are running outside my door. Yes, exercise is important for everyone.

 

We visit the kitchen where lunch is being prepared. Deliciously smelling omelets with onion, white beans with tuna from a can and fresh green lettuce with tomato. ‘There is salad every day', Francesc explains.

 

There are the cold stores where one of the employees shows me the crates full of green beans, harvested from their own garden.

‘We find it very important that the food here is good. We always eat healthy and fresh,' Francesc says, 'and the staff can eat here for free.’

 

I ask Francesc about the schools in Catalonia. A few years ago, in the context of the inclusive society, Spain also started setting up special classes in regular schools. ‘But there are still far too few of them,' exclaims Francesc. And here too, as in France, there is the problem that children with different problems are put together in such a class.

 

Francesc talks enthusiastically about the contact he has with the pedagogical training of the Fontys University of Applied Sciences in Eindhoven. ‘They have been here many  years in a row’, he tells me. He thinks it is a wonderful training. I tell Francesc that in the Netherlands people with wonderful training are seldom to be found in the special schools. The schools, or the government, I don't know; they don't want to spend money on these high educated people. In special secondary education in the Netherlands children are taught by primary school teachers. They are cheaper. In the Netherlands you do not need a higher education to work in special education.

Francesc is shocked: ‘A primary school child needs a completely different kind of teacher than an adolescent in secondary education!’

 

Francesc explains that in Catalonia the schools for special education are well equipped in terms of expertise. There are pedagogues and all kinds of therapists and teachers with special training.

 

Finally, on our walk we visit the buildings where the people live. They are palace-like houses, formerly private property of very rich people. One of the houses is still owned by the heirs of the former French resident, who have given it to the association, on loan for free. The houses are spacious and cool. The atmosphere of old grandeur is palpable through the beautiful chandeliers on the ceiling, the statues, the tiles, the magnificent staircase. The space alone in these houses will do the residents good, I think.

 

 

At the end of our walk I ask Francesc what his dream was when he first came to work here. ‘None at all! In the beginning, I could not imagine that after ten years this small special school for children with autism in Barcelona would become a network of services that can give a high quality answer to most needs of people with autism and their families.’

 

Autism La Garriga has expanded its activities beyond the residential facility. There is a department that offers help to people with autism according to the modern methods through examination, advice and treatment. Francesc says that children need to be trained to sit still at school. Sometimes medication has to be prescribed to achieve this.

 

The wonderful institute in La Garriga, where people with severe multiple disabilities still lead full lives, could be founded 50 years ago by enthusiastic people with pure motivations, because the current rules and requirements of the legislators did not yet exist. As in my previous story about La Bourguette (see previous post), it is impossible to establish such an institute in the present time. The passion that existed for these people fifty years ago would not be enough to help people today. The madness of rules and regulations that has beset the whole of Europe has, of course, also overtaken humanity here in Spain. It is simply impossible. 

I wonder: Is Europe really capable of implementing the beautiful goals it has set for vulnerable people?

My journey began as a search for beautiful projects that make a difference. But it is increasingly becoming a search for the truth of fundamental human rights.