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Lagging decades behind on autism care, France plays catch-up

ROUEN, France — When Gaspard Bigand was 3 years old, his pre-school teachers labeled him “different.” But his parents got zero advice from the French education or health care systems, and it took two years for him to be diagnosed with autism.

The family’s challenges were only beginning, in a country where only 20 percent of children with autism go to school. Despite France’s lauded public health care system, it’s shockingly behind the curve on providing basic education and therapy for people with autism. Seeking to change that, French President Emmanuel Macron announced a long-awaited, 340-million-euro autism plan Thursday.

The plan includes a push for earlier diagnosis, help for families, teacher training and research to better understand autism, a neurodevelopmental disorder marked by repetitive behaviors and impairment in verbal communication and social interaction.

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.

Public awareness in France is surprisingly low, with some parents telling their children to avoid autistic peers. Many adults on the autism spectrum remain undiagnosed. French families who can afford it go to neighboring Belgium or across the Atlantic to get better treatment and care.

“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 Langloys listed outdated therapy practices, lack of trained medical staff and teachers, and an obstacle course to gain access to school, care and employment.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 says his plan can change that.

“You will save enormous amounts of money if you manage to register a young child of 2 years old very early in a program that will enable him to be kept in school normally,” he said.

That’s been essential for families like Gaspard’s, living in a small Normandy town and struggling with what his mother Anne-Claire calls the “monstrous” costs and bureaucratic hurdles of getting him care.

As a toddler, he didn’t reach out his arms, didn’t speak and plugged his ears to block out the world around him, his mother said. She quit her job to care for him, her third son.

After a protracted diagnosis process, reading the word “autism” on a letter was painful to Gaspard’s parents.

“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,” Anne-Claire Bigand told The Associated Press.

They are among the lucky ones. Now Gaspard is in his first year of primary school, where “there are by chance great teachers who do everything to include Gaspard … Although they have a lack of training and a lack of information, they are very much involved,” his mother said.

He was reading well ahead of his peers, so teachers allow him to spend time in a reading corner while others are still learning the basics, or get up when he has trouble concentrating — things unthinkable in most French classrooms.

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 not all families can do it,” Bigand said.

Wearing a blue ribbon promoting autism awareness, Macron and his wife Brigitte visited a hospital unit in the Normandy city of Rouen and later a day care center that accepts children with autism — an exception in France.

In January, France’s Court of Auditors estimated that, statistically, about 700,000 people live with autism in France. But the number of adults identified as being on the autism spectrum is only 75,000, despite an improvement in early diagnosis in recent years, the Court wrote.

In the United States — where an estimated 1 in 68 children have autism — government agencies, medical organizations and advocacy groups all urge early diagnosis and treatment. U.S. public schools are required by law to offer individualized education programs to children with disabilities including autism.

The American Academy of Pediatrics recommends that pediatricians be alert for early signs in infants, especially those with a family history of the disorder. The influential group also recommends specific autism screening at age 18 months and 24 months.

Frederic Moreau and his family left France and moved to Montreal, Canada, when their autistic son Leonard was 13, out of frustration at lack of options at home.

“When we arrived, we entered a completely different world,” he said.

He said Leonard was tested to determine the best way of teaching him at school, and medical staff communicated well with the school — which is not the case in France.

Leonard 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.

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Lindsey Tanner in Chicago contributed to this report.

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