“Announcement effects” but “we see nothing on the ground”, deplores the SOS Autisme France association

The executive presented the new national strategy for neurodevelopmental disorders (NDD) such as autism, hyperactivity or even DYS disorders (dyslexia, etc.), with a budget of 680 million euros for better support. charge and systematic screening of all children before the age of six. “It’s a charade”estimates Olivia Cattan, president of the SOS Autisme France association because as with every plan, “all this money invested in this cause, it’s wonderful” but “parents and associations don’t see” never any concrete improvement.

franceinfo: Are these additional resources good news?

Olivia Cattan: I would like to say that this is good news. Simply, every time we make announcement effects like that, we see nothing on the ground. Why a new autism plan each time without having taken stock of the previous one? All the announcements that have been made are good but nothing is visible on the ground, parents are forced to keep their child at home.

“There is not much additional schooling because, in fact, when we say that an autistic child is in school, he is in reality only in school two hours a day very often, sometimes three times a week, not every day. There are very few who go to primary school in ordinary schools.”

Olivia Cattan, president of the SOS Autisme France association

at franceinfo

We are not in a situation of inclusion at the moment in France. I myself had to go abroad because I couldn’t find a high school for my son who had an average of 16. He worked very well, he has Asperger’s but I had to go abroad because no high school could take him. So I would like the Court of Auditors to look at where this money is going because we are constantly told of astronomical sums. Today, we remain speechless because we say to ourselves that all this money invested in this cause is wonderful, except that parents and associations do not see the results on the ground.

What are the gaps on the ground?

Already the support. A school assistant goes from one disability to another, running all day to take care of different children. There are still no trained and better paid school life assistants (AVS). And then if we are at less than 1% of autistic people who are hired today, it means that there is still a big problem. Where are the learning pathways that we have been promised since Emmanuel Macron’s first five-year term?

We all had a lot of hope. They spoke to us about inclusion, spoke to us about jobs, apprenticeship pathways… So we had a lot of hope and we are extremely disappointed. I think a lot of money has been put into research. You obviously have to look. But there, at least on the ground, we must especially help parents. Above all, we must give these children a future. We have had the lives of autistic children totally sacrificed, along with the lives of their parents. Because being parents of autistic children is extremely difficult.

What is the daily life of these families?

It depends on whether the child is in school, whether the parents have managed to find a specialized center for those who cannot go to school, it means finding an AVS in the private sector when there is none in the audience. It’s knocks, stereotypies to endure all day, sometimes violence committed against parents, so kicks, punches and broken ribs. And then, finding a doctor is very difficult because there are very few doctors who are trained in autism. So it’s months of waiting. And for specialized centers, it means years of waiting. This is why people go to Belgium or elsewhere abroad. It didn’t work out. Nothing has been fixed. So it’s a charade.

If it doesn’t follow screening, even if it becomes systematized before six years as announced, what’s the point?

If we can detect children earlier, it is important because the earlier treatment is started, the more progress the child will make. The problem is that afterwards, you have to find the right people: behavioral psychologists who are expensive, who are not reimbursed by Social Security, speech therapists who are trained in autism, psychomotor therapists who are not reimbursed either. by Social Security.

“That’s good, we’re going to screen your child but we’re not going to find health professionals to take care of him. So it’s still going to be up to the parents to do everything.”

Olivia Cattan, president of the SOS Autisme France association

in franciffo

There is in fact an injustice: there is autism for the rich and autism for the poor. Those who have the means have their children who do better and those who don’t have the means, it’s very difficult for them.