France faces down its outdated notions about autism – Spectrum

Behind the brightly colored walls of FuturoSchool’s main hallway, in a small, cozy cubicle, Samy Sajidi is meeting with his counselor. Sajidi has autism and attends the school part-time. Since November 2016, he has also worked as a sales assistant at a clothing store — and so far, he tells his counselor, the job is going well.

It’s 3 p.m. on a Wednesday in October, and there are just four students present, including Sajidi, 27 — because this is no ordinary school. Occupying a modest space on the first floor of a quiet residential building in Paris, FuturoSchool is among the first schools in France to focus on providing applied behavioral analysis (ABA) for people with autism. Its eight other pupils, who also receive occupational therapy and speech therapy, are in lessons at nearby mainstream schools or away at activities such as music classes, swimming or judo.

After their session is done, Sajidi and his counselor step out of the cubicle and walk toward an open space in the center of the school. It’s filled with colorful equipment: giant exercise balls, gym mats, a ball pit. Sajidi and his counselor pick up tennis rackets and hit a ball back and forth, their laughter floating across the room.

Sajidi’s days weren’t always so lighthearted. When he was just 2, he was diagnosed with ‘childhood psychosis.’ Instead of starting nursery school, he spent his days at a psychiatric ‘day hospital,’ where he attended sessions with a psychoanalyst. “It was a disaster,” says his father, M’hammed. Over time, Sajidi became increasingly violent toward others and harmed himself.

When Sajidi was 10, his father stumbled upon an article online in which a Canadian couple described the behavior of their son with autism. “It was like they were recounting the behavior of my son,” he says. He and his wife spent more than six months looking for a child psychiatrist who would change their son’s diagnosis to autism. With that new diagnosis, they took their boy out of the day hospital and enrolled him in a mainstream school for two hours a week. It took another four years before Sajidi’s parents learned about ABA and found professionals to work with him — at which point his behavior started to improve.

That transformation led to FuturoSchool, which Sajidi’s father founded in 2004. Soon, other parents with children on the spectrum offered funding to expand the school. It took five years before the government recognized the organization as an experimental public school. In 2016, the government removed the school’s experimental label and granted it 15 more years of funding. Sajidi is now 90 percent independent, thanks to the continued behavioral interventions he has received, according to his father. But almost every day, M’hammed Sajidi says, he meets parents still trying to get an autism diagnosis and therapy for their child. He shakes his head. “That’s not normal,” he says.

France lags about four decades behind countries such as the United States and the United Kingdom when it comes to diagnosing and treating autism, says Danièle Langloys, president of the advocacy group Autisme France. Like Sajidi, many young people with autism are not identified early, when they stand to benefit the most from behavioral therapies — although rates of early diagnosis have improved over the past decade. Some people with the condition are never identified. One 2015 study pegs the prevalence of autism in France at 0.36 percent, well below the 1 percent reported in the U.K. and roughly 2.5 percent reported in the U.S. Among children who are diagnosed with autism, only about one in five attends a mainstream school.

The Council of Europe, a Strasbourg-based organization that focuses on human rights across the continent, condemned France five times between 2004 and 2014 for discriminating against people with autism. The organization said that France violates, among other things, the rights of people with autism to be educated in mainstream schools and to receive vocational training. In its 2016 report on France, a United Nations body of experts called the Committee on the Rights of the Child similarly expressed concerns that “children with autism continue to be subjected to widespread violations of their rights.”

Responding in part to these high-profile criticisms, the French government has taken small steps in the right direction. In 2005, several government ministries issued a memo calling for an ‘autism plan.’ That first plan offered new screening and diagnosis recommendations for autism. It also created ‘Autism Resource Centers’ in each of the nation’s administrative regions to screen children for the condition and offer advice to their parents about possible treatment options, financial help available, and so on. Also around that time, France’s official manual for diagnosing psychiatric conditions in young people, the “Classification Française des Troubles Mentaux de l’Enfant et de l’Adolescent,” stopped defining autism as a psychosis, bringing it in line with international diagnostic standards. Two subsequent government plans introduced specialized teaching units within some mainstream schools. They also added more regional centers and stepped up efforts at the centers to make earlier diagnoses.

But parents, scientists and advocacy groups say those plans didn’t go far enough — in part because of a lack of oversight. They are pinning their hopes on a fourth initiative that is under development. Details on this new ‘Plan Autisme 4’ are slim, but two key aspects are measures to increase access to specialized classrooms, and better job training and housing options for adults on the spectrum — who were largely left out of the previous plans.

“My great fear is that there aren’t really means to achieve all that we would like to achieve,” says Bernadette Rogé, professor emerita of psychology at the University of Toulouse-Jean Jaurès, who is part of a Plan Autisme 4 working group charged with, among other things, finding ways to improve access to treatment. “We really have a lot of good ideas.”

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