Russia may adopt new rules for treating children with autism spectrum disorders - absolutely unscientific and dangerous for patients

The authors of the recommendations suggest that all people with ASD have reduced intelligence

On March 29, public discussions of a new draft of clinical guidelines for autism spectrum disorders (ASD) will be completed on a special portal of the Ministry of Health. The authors of this document propose giving children with ASD the strong drug haloperidol, without even mentioning its safer analogues, and call modern methods of therapy with proven effectiveness "harmful." The list of questions for the recommendations - and their authors - from professionals does not end there. Meduza tells about what the approval of this anti-scientific project, which some doctors call "a return to the Stone Age," could lead to.

At the end of February 2024, a draft of new clinical guidelines for autism spectrum disorders (ASD) in children appeared on a special portal for public discussions at the Ministry of Health. At first, the document did not attract much attention, but towards the end of March, several well-known doctors wrote about it.

"On the eve of World Autism Awareness Day , Russia plans to approve clinical guidelines on ASD of very dubious quality," pediatrician Sergei Butriy wrote on social media. Psychiatrist Stepan Krasnoshchekov expressed himself even more categorically on his channel: "We will soon go back to the Stone Age."

The Anton Tut Ryadom foundation, one of the most well-known organizations supporting people with ASD in Russia, also called for “stopping the revision of clinical guidelines on autism.”

“Clinical guidelines are an official document according to which a doctor must conduct diagnostics and treatment,” Stepan Krasnoshchekov writes in his Telegram channel. “And don’t let the term ‘guidelines’ mislead you, they are mandatory to follow.”

The very concept of "clinical guidelines" appeared in Russian medicine in 2018, when the corresponding law was adopted. According to it, all medical care in the country (except for experimental treatment methods) really should be provided based on such documents approved by the Ministry of Health. And although the complete transition of medical workers to mandatory clinical guidelines has been postponed more than once, it should finally be completed by the beginning of 2025. However, despite the fact that the process has not yet been completed, the courts already recognize failure to comply with adopted clinical guidelines as the provision of medical services of inadequate quality.

The new project proposes giving children haloperidol, which causes irreversible side effects. The authors do not even mention safer alternatives

The current guidelines for autism spectrum disorders were developed in 2020 by the Association of Psychiatrists and Psychologists for Evidence-Based Practice . The organization's leadership includes such renowned specialists as child psychiatrists Elisey Osin, Artem Novikov, and the head of the department of clinical and pathogenetic problems of child and adolescent psychiatry at the V. P. Serbsky National Medical Research Center for Psychiatry and Addiction Anna Portnova. Since 2022, the guidelines developed by them and other specialists have become mandatory for all doctors in the country.

The text of the current guidelines was met with positive reception by many doctors and NGOs. This was largely due to the fact that the document included a rejection of methods that had no evidence of effectiveness and safety (from a gluten-free diet to transcranial magnetic stimulation). However, by law, the guidelines must be reviewed every three years to include advanced treatment methods.

But the project that appeared in February 2024 will rather force a step back in the treatment and even in the very understanding of autism spectrum disorders - if it is adopted. The document was prepared by the Russian Society of Psychiatrists (RSP). In their text, RSP experts refer to scientific articles with titles such as "The Prevalence of Autism: Real and Imaginary" or"Diagnostics of Childhood Autism: Mistakes and Difficulties" (the co-author of both works is Igor Makarov, head of the children's department of the V. M. Bekhterev Center for Psychiatry and Neurology and part-time member of the RSP board ).

These texts consistently defend the idea that the diagnosis of "ASD" is made too often - and that this is done by doctors "subject not so much to common sense" as to the current fashion in global psychiatry. This also allegedly occurs under pressure from society and its "ideas about the 'good' of the patient."

Here is what, for example, the authors of the article “Diagnosing Childhood Autism: Errors and Difficulties” write:

Despite the vast experience, numerous studies and the study of mental retardation over 150 years in Europe and Russia, many diagnostic criteria for mental retardation have “migrated” to the phenomenology of childhood autism over the past twenty years. The very fact that ICD-10 has a diagnosis of autism with mental retardation, but there is no diagnosis of mental retardation with autism… This seems paradoxical, since it is primarily the capabilities of the intellect that largely determine the ability to interact with others.

As a result, in their draft clinical recommendations, experts from the Russian Society of Psychiatrists largely focus on medications, including recommending the use of the powerful antipsychotic haloperidol to relieve “excessive irritability” and “correct aggression,” and, in their opinion, this drug can be given to children from the age of two.

A psychiatrist familiar with the process of developing the recommendations, in a conversation with Meduza, notes that the presence of haloperidol in the clinical recommendations will lead to many children being treated with it - this drug is cheaper than other drugs in the same group:

And the fact that its prescription is permitted from the age of two will lead to the fact that it will be easier for officials to lobby for the prescription of the drug than to create systems of assistance. Moreover, haloperidol has pronounced and almost irreversible side effects in the form of so-called tardive dyskinesia . The image of mentally ill people in pictures with angular faces and trembling lips is, in fact, a classic side effect of haloperidol.

At the same time, Meduza’s source adds, the ROP recommendations do not mention a more gentle but expensive drug, atomoxetine, which is present in the current version:

When a patient with autism spectrum disorders has ADHD , atomoxetine works well. This drug can be taken for a long time, it has side effects, of course, but they are not the same as with antipsychotics.

Methods of working with ASD that have proven effectiveness are called "harmful in some cases." And they also suggest that all people with autism have reduced intelligence (this is a misconception)

While the ROP experts paid a lot of attention to various medications (including potent ones), they devoted only a little more than two pages out of 69 to methods of patient rehabilitation (for comparison: in the 2020 recommendations, this section takes up more than 12 pages).

In particular, the authors of the project actually questioned the currently popular method of applied behavior analysis (abbreviated as ABA - from English applied behavioral analysis ). Here is what a pediatrician , who asked to remain anonymous, tells Meduza about this method:

Applied behavior analysis is a specific method of influencing a child with behavioral difficulties in order to extinguish undesirable behavior and develop desirable behavior. In the early stages, it is similar to training, which is why a huge number of old-school doctors and even parents have a negative attitude towards ABA therapy, but it is the most proven method in the world used to correct behavior. The movement of its deniers resembles the movement of anti-vaccinationists.

"The essence of the method is that all the skills that are difficult for children with autism spectrum disorders to master are broken down into small blocks. The child masters each of these blocks separately, and then they are combined into one more complex one" - this is how the experts of the ROP themselves describe the essence of the ABA approach. They stipulate that sometimes this method can be useful, but "in a number of cases" it is, in their opinion, "not just useless, but also harmful."

According to a psychiatrist familiar with the process of developing the recommendations, if this position is transferred to the final recommendations of the Ministry of Health, it will affect the availability of the ABA approach in Russia:

If a clinical guideline recommends an intervention, we can eventually push for it to be paid for by the state. This draft guideline does not provide that opportunity.

At the same time, as stated in the review of the ROP project prepared by psychologist Alexandra Guchaeva (a copy of the review was given to Meduza by Guchaeva’s colleagues; she herself did not communicate with the editors), the “harmfulness” of ABA is not supported by specific references to research, while the effectiveness of this method when working with children is confirmed by scientific articles.

Also, some doctors have questions about the conclusion of the authors of the ROP that autism is most often associated with a reduced level of intelligence. To assess this level, the ROP recommends using the Wechsler test - its first version appeared in the middle of the 20th century. True, since then the test has been revised several times. Nevertheless, the current clinical guidelines for ASD rightly note:

With regard to the Wechsler tests, the most frequently used methods in Russian clinical practice, it is worth noting separately that all existing versions are adaptations of the first versions of the original methods, which are currently largely outdated and which have never been standardized on a Russian sample.

A pediatrician who asked to remain anonymous said the ROP bill effectively introduces a presumption that most people with autism have reduced intelligence— even though this is not true .

If we want to prove the opposite, we are offered to use the Wechsler test, super-subjective and outdated. As a result, we write the wrong thing in the fundamental document. It is like making a fundamental mistake in the pilot charts, which will later lead many to a longer journey, or even to the death of the ship.

This is not the first time that ROP has tried to legitimize its vision of autism. It didn't work out last time, but now a rematch is possible

Experts from the Russian Society of Psychiatrists proposed a project that was essentially similar back in 2020, when the first clinical guidelines for autism spectrum disorders were adopted. Even then, haloperidol was mentioned in their text, and ABA was called “one of the most expensive methods in the world.”

Some doctors and parents then called the recommendations of the ROP “charlatanism,” and the arguments with which the Russian Society of Psychiatrists defended their case were compared to the discussions of the 1930s.

“[The ROP project developers accuse their opponents] of groveling before the West,” wrote the famous psychiatrist Vladimir Mendelevich, himself a member of the ROP (he also developed the current clinical guidelines), in 2020. “In general, apparently, they would be satisfied with the ceremonial lowering of the iron psychiatric curtain and sovereign psychiatry.”

However, at that time the Ministry of Health approved the project of the Association of Psychiatrists and Psychologists for Scientifically Based Practice, which is still in effect. Its developers prepared an updated version back in January 2023, which underwent public discussion (on the same resource where the ERP project is now posted) and was sent to the Ministry of Health. After that, the document was returned to its creators to correct technical errors.

As a result, the situation of 2020 will likely repeat itself - the Ministry of Health will once again have to choose between the Association's project, which is more focused on methods with proven effectiveness and ABA methodology, and the text of the ROP, which emphasizes drug treatment and the traditions of "old psychiatry".

"In psychiatry, we have a layer of old-school professors who still believe in sluggish schizophrenia and who do not rely on modern recommendations, data - on how the whole world works. They defend the position that we have domestic psychiatry, which works this way and should work this way, because we are great domestic scientists," states a psychiatrist familiar with the process of developing recommendations.

The probability that the Russian Society of Psychiatrists will win this time is quite real, the editorial source continues. “The possibility is not zero,” he notes. Against this background, the Anton Tut Ryadom foundation and some psychiatrists (for example, the already mentioned Stepan Krasnoshchekov ) are calling on specialists, people with ASD and their relatives to write a review of the Russian Society of Psychiatrists’ project. This can be done up to and including March 29.

“[Adopting the ROP recommendations] would mean a rollback of 10–15 years,” states a pediatrician who agreed to speak to Meduza on condition of anonymity. “This is not a return to the Middle Ages, but it is a sharp decline in the quality of care, which, by the way, is already being observed. Nominally, [the recommendations of the Association of Psychiatrists and Psychologists for Scientifically Based Practice] exist, but who really follows them? And here we will introduce a rollback from these positions into the law, and there will be some more lawsuits for trying to follow global practices contrary to the position of the Ministry of Health.”

Kirill Olgin

Cover photo: Laura Fuhrman / Unsplash