Bookstores distributing a controversial book spreading false information
In the end of May, by way of Südailm publishing, a translated work by J.B. Handley called "Kuidas peatada autismiepideemia" ("How to End the Autism Epidemic") has been sold in Estonian bookstores. The book has received warnings from doctors and the Estonian Autistic Association but bookstores will not take responsibility for it.
Even the title of the book is misleading as according to the normative dictionary, the word "epideemia" means a high rate of cases of infectious diseases which autism is not.
The Estonian Autistic Association is trying to point out misinformation in the book.
"There is no autism epidemic. Diagnostic criteria has widened over the last years and our knowledge of autism has improved, which leads to more people being diagnosed," the association explained on social media.
The book also connects vaccines to autism, which has not seen any scientific proof since 1998.
The introductory paragraph of the book claims that since the 80s, the amount of vaccines administered has quadrupled and in that span, the rate of autism has increased by 30,000 percent.
"In the book "Kuidas peatada autismiepideemia", co-founder of Generation Rescue and the father of an autistic boy, J.B. Handley brings forth scientific evidence that connects vaccines to immune activation in the brain," written in the introduction of the book, even though such scientific evidence does not exist.
Derives from genetics
Physician and associate professor of family medicine at Tartu University, Marje Oona said that she has not read the work in question but has thought about why the connection of autism and vaccines has been held in focus for so long, while the actual proven side effects of vaccines is not talked about half as much.
For example, there is a list of possible vaccine side effects managed by the United States Center for Disease Control and Prevention. If side effects prevail, the vaccinee is legally justified to receive compensation. Pressure groups wanted to add autism to this list, starting a petition and collecting signatures for it. They also had hired communication workers on the campaign, but it ultimately fell through because there is no scientific evidence of the connection between vaccines and autism.
Scientists however have discovered more information on the actual causes of autism.
"More and more scientific studies have been conducted and it's clear that the autism spectrum is actually genetic. 80-90 percent of autism spectrum forming is due to genetic factors. There may be other reasons, but vaccines are not one of them," said Oona.
She explains that there are often signs of autism in the families of people on the autism spectrum, for example someone might be fixated on a specific subject. And then that is amplified in the next generations.
The reason why autism appears more than before is improved diagnostics, as stated by the Estonian Autistic Association. The limits of diagnosis have also been widened, so what is regarded as on the spectrum, is wider.
"Before it wasn't acknowledged that there is a spectrum, people got other diagnoses. It was thought that it's the fault of the parents, who have ruined their kids with their upbringing," Oona explained.
Modern society however insists on so much socializing and communication, which often brings autistic people forward. Before, one might have thought that the person just is someone who keeps to themselves and doesn't communicate much, Oona said.
In addition to genetics, there can be many other factors, such as pollution, plant protection products or the persons' microbiomes themselves, but these are additional factors, not the main one, Oona emphasizes.
Conspiracy theorists often point to a higher concentration of aluminum in the brains of autistic people, but Oona said that independent studies have not reached such conclusions.
She calls this an anti-vaccine tactic: if one hypothesis fails, another one is picked up, with the main goal of casting a shadow on vaccination never changing.
Previous works taken off shelves
This is the second published work of Liis Ellert's Südailm Publishing. The first, also a translation also dealt with vaccines and was taken off shelves in 2018.
"Vaktsineerida või mitte?" ("Vaccines: Yes or No"), the work of Italian authors received many complaints because the book contained false claims and Rahva Raamat decided to remove the book from sale. Apollo however continued to sell the book. The work was also distributed from the portal osta.ee, with the value of the book increasing due to it being controversial and taken off shelves.
However, there were more nuances to it, the authors of the book, former scientists at Modena University, Stefano Montanari and Antonietta Gatti, were banned from using electron microscopes by their school because they were falsely construing results. They finally received an electron microscope from populist politician Beppe Grillo, who is the founder of the controversial Five Star Movement party in Italy, which has publicly called vaccines dangerous, HIV and AIDS as a conspiracy created by pharmaceutical companies and more.
Liis Ellert, owner of Südailm publishing, is also involved with "alternative" movements in Estonia, such as Eesti Ellujäämise Kogukond, which received 0.1 percent of votes in local elections in Tallinn. She has repeatedly spoken up on the portal Telegram.ee about the dangers of electricity radiation and is firmly against new generation 5G technology because of that.
Bookstores passive about the controversial book
In terms of the book "Kuidas peatada autismiepideemia", bookstores have taken a much more passive stance.
Rahva Raamat notified that if the contents of a book disturb the reader, complaints should be sent directly to the publisher.
"We are sorry that a book in our catalogue disturbed you. Unfortunately Rahva Raamat is not able to read or give a assessment on every book we sell. We trust our partnering publishers, who are responsible that the contents of a book are correct and comply with the law. From time to time, a controversial book ends up in our catalogue and because of that, we ask you to get in contact with the publisher who can also give you precise sales information," said Kersti Küla, marketing and communications manager at Rahva Raamat.
Apollo also replied, saying that they do not see anything controversial in the distribution of the book in question and are not taking any responsibility in the distribution.
"Publishers are responsible for contents of the work. We are resellers. This doesn't mean we sell everything but the controversial content might not be a sufficient reason to not sell it," said Eha Pank, CEO of Apollo.
"Ideally, to remove a work from sale, there should be a legal injuction or order to remove it from sale," Pank added.
There is no such injuction in legislation.
Head of the Health Board, Merike Jürilo has commented earlier that the author of the book is responsible for what they have written, the publisher is responsible that they have fully delved into the subject matter of what it distributes.
She thinks that a ban on book sales is not a solution, buyers should instead be more critical of content.
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Editor: Kristjan Kallaste