Researchers want to help parents of children with autism

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After having been bernée by several false information presented on the web and in books, Annick Langlois, the mother of the little Alice, was even published a book on the spectrum disorder of autism, called autism, hand in hand.

Catherine Montambeault

Saturday, 29 July, 2017 20:57

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Saturday, 29 July, 2017 20:57

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Injection of vitamins, DNA analyses, plans wacky : of montreal scholars discouraged to see relatives and friends of people with autism to try all sorts of treatments questionable launch a web platform to distinguish the true from the false.

Learning that her 2 year old daughter, Alice, was suffering from the spectrum disorder of autism, Annick Langlois has begun research to try to ” cure “.

“After having read the book autism is not irreversible !, Evelyne Claessens, I was convinced that it was possible to cure autism, whereas now I know that this is not the case. I believed it for at least four years, ” says the mom of Lachute.

Charlatans

According to the state of current research, autism is not a disease. So we can’t talk about treatment or healing. Yet, this myth persists on the web and in some books, like the combination of this neurodevelopmental disorder with vaccination or the consumption of gluten.

It is to put an end to these false beliefs that the web-based platform Myelin will be put online as early as October. Developed by researchers from the University of Montreal and Polytechnique, it will provide answers to questions based on the science.

Great suffering

“By performing my internship in psychoeducation, I have seen how there is a suffering, for people with autism and their family and friends, not having access to the right information “, says Marc-Olivier Schüle, phd student at the School of psychoeducation of the Université de Montréal.

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Marc-Olivier Schüle
Researcher

The researcher explained that just 14% of the scientific information is actually used and that it takes on average 17 years between the publication of scientific results and their application.

According to him, several charlatans are taking advantage of the vulnerability of the people diagnosed and their loved ones to make them swallow all sorts of twaddle. This is what happened to Annick Langlois, who has often changed the diet of her daughter and relying on the web.

“We did gluten-free diets, lactose-free, and they gave her vitamins… I went so far as to inject vitamin B12 to my daughter,” she says.

Ms. Langlois sent regularly of hair and urine samples from his daughter to laboratories in the united states, always in the hope of a miracle cure.

Artificial Intelligence

For now, Marc-Olivier Schüle and his team must extract for themselves the information documents that are published on autism, and insert them in Myelin. The artificial intelligence can then use these data to answer questions of internet users.

But in the end, the Montreal-would like the tool to be able to carry out this operation by itself and become completely autonomous.

“We would also like to extend the project to all issues relating to mental health, he notes. We first would like to include the attention deficit disorder with hyperactivity (ADHD), and anxiety, depression, and all the rest. “

The shock makes the family vulnerable

The shock experienced by parents upon learning that their child is autistic can make the search of truthful information is even more complex, suggested the quebec Federation of autism.

“People are often in an emotional state that makes it can be difficult to make good choices, and distinguish facts from simple beliefs,” says Jo-Ann Lauzon, the director-general of the organization.

“We work a lot to disseminate information and develop tools, she adds. When a parent calls us, directs them to the resources of his region, where he will be able to meet professionals and families who are experiencing the same thing as him. “

Even if its website already provides reliable information, the FQA is supporting the project Myelin, highlighting that” there can never be too much help.”

Annick Langlois, the mother of a young autistic daughter, confirms that parents are fragile after the diagnosis.

“We try to fetch everything that we can to help our children,” she says. And often, in our despair, we tend to take everything we can find. “

Left to themselves

The time that is needed before access to services can also encourage families to educate themselves on the web, note Melissa Baker, mother of two boys with autism, aged 9 and 12.

“When we got the diagnosis of my youngest son, the neuropsychologist told us to go to the CLSC to have services, but there were two years of waiting. It is, therefore, found themselves alone, without knowing where to turn, ” said the woman in Mascouche.

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Melissa Baker
Mother of two boys with autism

On the web, Mrs. Baker quickly found that the resources are credible are rare, especially in French. “There are a lot of sites in France, but he must be careful, because, there, it is 50 years back when we talk about autism “, she notes.

Melissa Baker is also keen to put people on guard against groups of parents on Facebook.

“It is always interesting to be able to discuss with parents like us, because we feel less alone, but there is also bad information that circulates on it,” said she.