ROUEN, France (AP) — French President Emmanuel Macron is unveiling a long-awaited autism plan for a country that is shockingly behind the curve on providing basic education and care for people on the autism spectrum.
Yet families and associations say the plan is unlikely to take the giant steps needed to catch France up with the United States, Canada, and other European countries.
Despite France’s lauded public health care system, public awareness of autism and related disorders is surprisingly low. Only about 20 percent of children with autism in France go to school, many adults remain undiagnosed, and French families who can afford it go to neighboring Belgium or even across the Atlantic to get better treatment and care, according to a January report by France’s Court of Auditors.
"You can’t imagine the level of suffering and anger of the families," said Daniele Langloys, president of the association Autisme France. Langloys listed outdated therapy practices, lack of trained medical staff and teachers, and an obstacle course to gain access to school, care and employment.
Macron — wearing a blue ribbon promoting autism awareness — and his wife Brigitte on Thursday visited a hospital unit in the Normandy city of Rouen dedicated to children on the autism spectrum. The unit is specialized in early diagnosis, and is an example of what France wants to develop nationwide. Currently, diagnosis in France takes a year and half on average.
Later Thursday Macron will visit a nursery that accepts children with autism — an exception in France.
The prime minister on Friday will unveil the plan to better address autism, a neurodevelopmental disorder marked by repetitive behaviors and impairment in verbal communication and social interaction. The plan is expected to focus on diagnosing adults and improving education options for children.
That’s essential for parents like Anne-Claire Bigand, who lives in a small Normandy town with her husband and their three boys, including Gaspard, 6, diagnosed with autism spectrum disorders.
"At pre-school the teacher told us that Gaspard was different," she recalled. He was then 3. It took almost two years for health authorities to provide formal recognition of the disorder.
Reading the word "autism" on a letter was painful to Gaspard’s parents, and no professional they met at the time offered them advice about what to do next.
"At no point did we feel reassured. We are reassuring ourselves because we see how he’s growing and we are trying to tell ourselves we’re doing everything so that he’s comfortable," Bigand told The Associated Press.
Now Gaspard is in his first year of primary school where "there are by chance great teachers who do everything to include Gaspard, they adapt their teaching to his disability, his concentration difficulties. Although they have a lack of training and a lack of information, they are very much involved," she said.
The Bigand family finally found a neuropsychologist able to propose them solutions for daily life just one month ago.
"This takes much time, this is expensive. It’s clear all families cannot do it," Bigand said.
France has already implemented three successive autism plans from 2005 to 2017, to little effect. Langloys is concerned the new plan is not going to be ambitious enough.
The Court of Auditors report estimates the number of people with autism in France at 700,000. The rates of early diagnosis have improved in recent years, but the number of adults identified as being on the autism spectrum is only 75,000, the Court wrote.
Frederic Moreau and his family moved to Montreal, Canada, when their autistic son Leonard was 13, out of frustration at lack of options in France.
"When we arrived, we entered a completely different world," he said. Leonard was tested to determine the best way of teaching him at school. Medical staff communicated well with the school — which is not the case in France.
He receives financial aid, and can request help to access job training and to look for work. Now 21, he is about to enter a design school with the hope of working in animation.