Chelation of heavy metals, cannabis oil, diverted drugs … In desperation, some parents turn to dangerous methods to help their autistic child.
"As mothers of children autistic, we have been alerted by parents about excesses that worry us to the highest point, "write Olivia Cattan, president of SOS Autism, and Estelle Ast, in their tribune published July 23 in the Huffington Post . The two women denounce the "alternative practices", which "would like us to believe that there is a miracle cure that would help our children." The "medical desert of autism" and the lack of treatment push families to despair, they explain, and some seek help in alternative medicines whose effectiveness has not been proven, indeed, which can be dangerous.
Research offers avenues
It is first necessary to distinguish the therapeutic approaches that are the subject of real scientific research of so-called "alternative" medicines, which do not rely on any medical basis. But, as Pr Marion Leboyer, head of the psychiatry and addictology department of the Henri Mondor Hospital (Créteil) and director of the FondaMental Foundation, recalls, "there is no cure for autism". On the other hand, she continues, "some symptoms badociated with autism can be relieved and research in this direction must continue."
"Parents are impatient and do not want to wait for the end of clinical trials. They read a study and say 'we will try' "
Olivia Cattan, president of SOS Autisme
Some encouraging studies have been published in recent years, particularly on oxytocin, a hormone involved in the construction of our social relations. In 2012, a team of CNRS and INSERM researchers obtained promising preliminary results with a nasal oxytocin spray, which had temporarily improved the social interaction capacities of a handful of adults with autism. Same thing for bumetanide. It has been several years since the teams of Professor Yehezkel Ben-Ari and Dr. Eric Lemonnier use this molecule to try to reduce the severity of autistic disorders. Promising results were published in May 2017 in the journal Translational Pyschiatry .
"These are very serious studies and I do not dispute it," says Olivia Cattan. On the other hand, the president of SOS Autism denounces "the big nothing" of self-medication in autism. "Parents are impatient and do not want to wait for the end of clinical trials. They read a study and say "we will try," she says. In addition, some doctors "prescribe Burinex (commercial name of bumetanide, Ed) without follow-up, without knowing if it works," she continues.
»READ ALSO – New promising ways to diagnose autism
"Parents spend hours and hours reading things on the internet, and some people have understood that, given their desperation, there is an economic market"
Olivia Cattan, President of SOS Autism [19659007] "I do not know if the parents measure the risks that they can run to their child", regrets Olivia Cattan. The latter has in her entourage not less than twenty families who use CBD oil, a molecule derived from cannabis in fashion on social networks. "A mom called me panicked because she was taking her son to the hospital and she was afraid they would find cannabis in her tests!" She says. But not only this product is illegal, but especially "the scientific level of studies on cannabis in autism is very low," says Professor Richard Delorme, head of the child psychiatry department at Robert Debré Hospital. "There is an ongoing trial in Israel to evaluate side effects, but for now, the information we have is insufficient to conclude."
A Market of Despair
But, in the absence of effective treatment, unscrupulous people felt that autism could be a financial windfall. "Parents spend hours and hours reading things on the internet, and some people have understood that, given their desperation, there is an economic market," says Olivia Cattan. Some parents take refuge for example in the idea that by ridding the child of its toxins, a cure would be possible. They therefore resort to the so-called "heavy metal chelation" therapy (a kind of purge). These products, which exist in various forms (sprays, suppositories, capsules …), claim to clean the body of toxic chemicals and heavy metals.
In 2005, a 5-year-old autistic child died of chelation, due to a low level of calcium in the blood, as reported in Clinical Toxicology . Indeed, this chelation technique can drain "minerals needed by the body, which can lead to serious consequences, possibly fatal," warns the US Agency for Food and Drug Products (FDA). "It's forbidden in autism," recalls Professor Richard Delorme. There is no level of evidence and plenty of side effects like drug hepatitis. " Yet some unscrupulous doctors still recommend this practice. "One of them has been written off by the Order of Physicians and yet she still practices from abroad," warns Olivia Cattan.
"READ ALSO – Chelation: Should we believe in its "detox" properties?
MMS, a derivative of bleach
"We pathologize a population that is different. This is what generates all the false beliefs, it is fertile ground for proliferating quackery "
Hugo Horiot, comedian with autism spectrum disorders
The two signatories of the tribune also warn against a new treatment: the MMS. The MMS for Miracle Mineral Solution is a 28% solution of sodium chlorite, a toxic molecule of the same family as those used in bleach. . Ingested by a living being, it can be fatal. Already in 2010, the French Agency for Drug Safety warned against its use. Fortunately, the product does not seem to be popular in France, but websites promote it, calling it a "solution to AIDS-HIV, hepatitis AB and C, malaria and other parasites, herpes , acne, tuberculosis and pneumonia, most cancers. "
Why do such treatments seduce? For Hugo Horiot, a comedian with autism spectrum disorders, this is because autistic people are considered sick people. "We pathologize a population that is different, he regrets. This is what generates all false beliefs, it is fertile ground for the proliferation of charlatanism. In any case, it is absolutely necessary to question oneself before giving any treatment to one's child, advises Professor Richard Delorme, and especially to rely on the expertise of health professionals.
»L What is autism? What symptoms, what treatment? See our health sheets
