Cruelty-based intervention. Russia is set to reintroduce antipsychotic drug as autism treatment

RU

The diagnosis of autism spectrum disorders (ASD) in Russia has improved in recent years, with the parent community learning to fight for the health of their children. As of 2022, approximately 50,000 Russian children carried a diagnosis of autism, and their treatment and care were increasingly incorporating and adapting cutting-edge Western methods. Today, however, that progress is under attack, as the Russian Society of Psychiatrists (RSP) has proposed new clinical guidelines for the treatment of pediatric autism.

If the Ministry of Health adopts them, modern approaches will give way to Soviet-era methods — specifically, the use of a potent first-generation neuroleptic called haloperidol (also sold under the brand name Haldol). Adherents of modern behavioral management therapy approaches for ASD condemn these recommendations, calling them “medieval” and comparing them to treating mental disorders with lobotomies. What is even worse, starting from 2025, the Ministry of Health's clinical guidelines will become mandatory for all medical professionals in Russia.

Even before the new regime goes into effect, the human cost of Kremlin policy is already being felt. In April 2024, the Denisovs (their name has been changed), a young family raising a child with ASD in the north of central Russia, were granted a place in a special rehabilitation center in a neighboring region. A few days before the trip, they were shocked to learn that the invitation had been postponed until at least the summer — the facility had to accommodate children from nearby Belgorod, a city close to the Ukrainian border that had been under frequent missile and drone attacks. How long these displaced children will remain at the facility is unknown, and in the meantime, the Denisovs’ child may be missing a critical window for development. The age of three is a very important threshold, as many children with autism experience a sharp setback in progress at this age, failing to master many of the new skills their neurotypical peers learn. This is why it is important to begin using Applied Behavior Analysis (ABA) techniques as early as possible.

In Russia, this approach forms an integral part of so-called “resource classes,” which provide more individualized assistance to children with autism by engaging special tutors. In one of Siberia's major cities, the local parent community had been pushing for the creation of resource classes for years before finally achieving success. The new clinical guidelines may now reduce their hard-fought accomplishments to naught.

“At first we thought it was fake news,” said Oksana (her name has been changed), an activist and the mother of a child with autism. “Because this is obscurantism — like treating neurasthenia with a dip in the water.”

Oksana paints a bleak outlook for parents who are not yet aware of their child's diagnosis:

“All a psychiatrist or a neurologist has to do [under the new guidelines] is to prescribe neuroleptics for the child and send the family home. Under current clinical guidelines, doctors would at least recommend ABA therapy and resource classes to dumbfounded parents. Mothers and fathers then googled these terms, found their local parent communities and relevant NGOs, and explored the nuances of modern methods on their own.”

A private child psychiatrist who agreed to speak to The Insider anonymously criticizes the use of drug therapy with haloperidol when used as the primary treatment for ASD:

“The worst thing about treating [autism] with haloperidol is that it is ineffective. A drug must target a specific symptom. In the case of antipsychotics for ASD, it's aggression. However, there is insufficient evidence that haloperidol helps with aggression in children with ASD — while its side effects are pronounced.”

Again, the Denisovs demonstrate the human cost: “All parents of ‘special’ children want to make sure their children do not rot in a psychiatric home after they die. They want their children to be able to manage on their own. The new law would make it impossible to even dream of such a thing,” says the father of the autistic child whose rehabilitation has been put on hold.

What's wrong with the new clinical guidelines?

One of the most detailed dissections of the RSP’s new clinical guidelines was offered by psychiatrist Stepan Krasnoshchekov, who studied under Professor Igor Makarov, a co-author of the proposal. Krasnoshchekov even points out that his former supervisor contradicts himself. While the RSP document asserts that children with autism do not undergo any period of normal development preceding a setback, Makarov writes in an academic paper co-authored with Krasnoshchekov that 30% of children with ASD do in fact experience such a phase.

Krasnoshchekov criticizes RSP experts for poor use of terminology, arbitrary judgments, and unsubstantiated statements. For example, RSP psychiatrists describe children with Asperger's syndrome (a type of ASD) as “clumsy.”

Finally, the RSP authors’ recommendation of haloperidol is based on a single study from 1984, meaning that the work is irrelevant by modern medical standards. The authors claim that the drug has no side effects — this despite the fact that even the outdated study they cite describes multiple. In addition, the authors cite two studies aiming to prove the benefits of another antipsychotic, olanzapine, based on a minimal sample of subjects: 12 and 11 patients.

Psychotherapist Ivan Martynikhin suggested that, if the new guidelines are adopted, doctors who are aware of the efficacy of ABA therapy will simply stop diagnosing autism on paper. After all, officially ignoring the medical reality may be the only way for doctors to avoid prescribing haloperidol to their patients.

Why adopt new guidelines in the first place?

The current guidelines were authored by Russia’s Association of Psychiatrists and Psychologists (APsyP). Updated last year, the clinical guidelines continue to promote behavioral analysis and were created in collaboration with parents raising children with autism. It appears that the new guidelines stem from the rivalry between the RSP and APsyP. Practicing child psychologists refer to the authors of the new clinical guidelines as the “Leningrad School of Psychiatry,” which is said to question the very notion of the autism spectrum.

Among the authors of the new guidelines are Vladimir Pashkovsky, MD, a professor at St. Petersburg State University, and the aforementioned Igor Makarov. In their papers and interviews, both professors directly link autism to mental retardation and schizophrenia (hence the suggestion to use haloperidol, a drug traditionally prescribed to schizophrenic patients) and condemn the modern trend for “overdiagnosis of autism.” In particular, Makarov states that American psychiatrists “invented” the autism spectrum and began to categorize children with mental retardation and speech developmental delays as autistic (the progressive approach to ASD suggests that these issues are only isolated symptoms of autism). Professor Pashkovsky seeks to create an “original approach” within Russian psychiatry, one meant to set it apart from “concepts borrowed from American psychiatric journals.”

Lena Urdina, child psychiatrist and the author of the Telegram channel No Stigma, jokingly said in a conversation with The Insider that, if the RSP's new clinical guidelines are approved, she would also be against “overdiagnosing ASD,” as all children with autism would then be put at risk of being “treated” with haloperidol. She continued:

“Russia’s healthcare system appears to follow the principle of discouraging patients from seeking medical advice and encouraging them to quietly die at home, without occupying a hospital bed. Mental health care was once provided to people who were deemed ‘dangerous’ to society. People who experienced ‘vital suffering’ were more likely to seek psychotherapy than psychiatry.

“In a sense, public psychiatric care is moving back to its roots. An individual's behavioral and quality-of-life issues have once again been devalued and are no longer considered important. Nevertheless, I believe that Russia is not a separate civilization, but a part of the general human population. In the United States, autism is diagnosed in every 36th child (about 20 times as often as in Russia).”

The organization “Anton Tut Ryadom,” a St. Petersburg charity working with people with autism, expects Russia’s Ministry of Healthcare to decide on the new guidelines in June.

Is it about cutting costs?

“There is not a lot of public money to be saved by cutting support for children with autism, especially considering how limited the funding is,” Oksana says, citing her colleagues’ opinions. “In 2022, all major organizations that previously enjoyed stable funding stopped winning presidential grants for resource classes, and all the burdens of providing tutors are gradually falling on the parents’ shoulders.”

Meanwhile, 11% of the 4.3 billion rubles (approximately $48 million) distributed in the first round of presidential grants in 2023 were allocated to 210 projects of purely patriotic and militaristic orientation, with a particularly dramatic increase in funding for projects to train teenagers to pilot UAVs.

Oksana struggles to understand the benefits of cutting costs in the sphere of treatment for autism: “If the state wants a child with autism locked up at home, that means the mother will also be forced to stay home, rather than joining the workforce, which is in short supply.”

Activist Ulyana, interviewed by The Insider, suggested that any deviation from the conventional norm is not welcomed by the Russian state:

“In the USSR, people with mental peculiarities were kept out of sight, in their homes or care facilities. But we do our best to socialize because people with autism are also people. Thanks to our efforts, society has long since realized that yelling at a child with autism on a playground is not normal, and neither is confining ASD patients in psychiatric homes. Perhaps some old-school psychiatrists feel nostalgic about Soviet times, when you could give a child a pill and they would lie like a vegetable without causing any ruckus.”

Elena (name changed), a professional mentor for children with autism, told The Insider that the authors of the new guidelines may not be aware of the benefits and principles of ABA therapy:

“We were all astounded, because previous guidelines prescribed applied behavior analysis, while the new ones are aimed at introducing mostly medication-based methods with questionable efficacy. ABA therapy is completely transparent in comparison, as it measures every achievement.”

The essentials of ABA therapy and resource classes

Applied Behavioral Analysis was pioneered in the 1980s at UCLA by a group of researchers led by clinical psychologist Dr. Ole Ivar Lovaas. Studies of ABA therapy demonstrate that observed children show significant improvements in intellectual ability and communication skills, moderate increases in IQ scores, and partial progression in daily living skills. At the same time, autism-related symptoms are reduced.

At best, ABA therapy’s introduction into Russia was still in its early stages, and its most notable success story has come from that of the Voronezh Region, where children whose parents apply for a place in a resource class receive specialized tuition without delays. It is rumored that the reason the authorities in Voronezh are so attuned to the needs of children with autism is that the regional governor's grandson was diagnosed with ASD.

In a resource class, each child is assisted by a designated tutor, who changes every few months. Each class is assigned a curator who assists the teacher and tutors. Gradually, the most able children with autism are smoothly integrated into a regular class alongside their neurotypical peers. First, the student is allowed to join the class for recess, then for simple subjects like music, physical education, or art. If the experience is positive, they can try sitting in on academic lessons for 10-15 minutes, gradually extending their presence to the full 40 minutes.

Elena, a practicing curator of resource classes, detailed the benefits children with autism might be deprived of if the RSP’s new guidelines come into effect:

“All data, the student’s every achievement, even the smallest one, is recorded and entered into a spreadsheet. A good specialist provides the parents with a diagram of the child's achievements, detailing how many skills the child has learned over time. It is a very accessible and transparent method. In some cases, ABA does not work, but the reasons are usually medical, such as epileptic seizures. Usually, each child has a customized program with specific objectives: for example, they are expected to learn and pronounce five new words in three weeks. The tutor puts down a ‘plus’ or a ‘minus’ every day depending on whether they succeeded or not. If the student keeps failing, the curator analyzes the situation and changes techniques or cues. The tutor follows a list of specific skills the child needs to learn.”

For her part, Ulyana, the activist interviewed by The Insider and the mother of a child with autism, appreciates the universality of ABA therapy and believes that everyone can progress if given the right approach:

“We witness our children learn new skills, gain academic knowledge, and get the necessary socialization. ABA works on any child because it is based on universal laws of human behavior. The only difference is that children with autism need this approach to succeed, while ordinary children can make do without it.”

ABA therapy is based on fostering the reflexes necessary for functioning in society, Oksana explains:

“Parents cannot keep protecting their child from auto-aggression forever. Instead, the child has to realize that he shouldn't commit self-harm. Our therapists mostly focus on making sure the children are safe and are able to fend for themselves. All programs are tailored to the needs of each student. For example, the child is offered cards illustrating several responses to a situation, and they must choose the right one.

“If the child does well in tests and assignments, they get a small token. Tokens can be exchanged for something nice, like a new toy or a favorite activity. Also, each student with autism may have triggers that interfere with learning, and not everyone can verbalize them, which means tutors have to figure out many things by trial and error.”

Sometimes children who can write with a pen at home fail to use their skills in the classroom. The tutor's job is to take the student's hand and re-teach them how to write. Tutors also offer cues: “It's math now, so we get out the math book.” When a student with autism moves to a regular classroom, the tutor sits with the student for a while and helps them.

This system of assistance for children with autism is based on three integral roles: the tutor, who assists the child; the curator, who monitors and directs the process in the classroom; and the supervisor, who assigns individual programs to each child and resolves issues if something goes wrong in the learning process.

But if the new clinical guidelines are adopted, organizing resource classes could become more complicated, Ulyana warns:

“Funding for tutors is in jeopardy. This is the main problem we will face if applied behavior analysis ceases to be a state-approved method. In this case, children with autism will either be transferred to a regular classroom, which does not meet their needs, or will have to choose between homeschooling and a private educational center.”

Can emigration solve the problem?

“Among my friends and acquaintances who left the country after February 24 [2022], only one family has a child with autism, and I only know them casually,” Ulyana says. “I can afford to relocate. I can probably take care of the daily necessities in a new country. But I cannot organize a resource class with Russian-speaking children and therapists. Speech problems are the most common issue in autism, and changing the language environment would be too much for my son. Not everyone understands him in Russian either.

“Resource classes are the reason why we parents of children with autism are tied to our country. Some families in our community have EU residence permits but do not want to move because we have built a system of assistance for special-needs children from scratch. We can't leave it all behind and recreate the same infrastructure in a new place.”

Psychiatrist Lena Urdina has compiled a list of the countries that parents of children with autism could consider if they are planning to emigrate.

1. Israel

Israel has inclusive schools and preschools with tutors, and the country provides adequate mental healthcare for children with autism.

2. Canada

The authors of the blog Autism Twice characterize the treatment of children with disabilities in Canada as “complete inclusivity”: doctors assist parents in registering their child with autism as disabled, and the child receives 20 hours of resource classes a week, plus sessions with a speech therapist and a daily living skills specialist. In addition, parents raising children with disabilities can apply for 16 hours of free babysitting a month.

3. Germany, the Netherlands, Finland, Poland, and the U.S.

These countries offer approximately the same level of assistance.

In the EU, parents of children with ASD may face problems with education in the Baltics and Bulgaria, where much depends on individual specialists.

The curator of resource classes interviewed by The Insider also cited Kazakhstan as an option: there, the state provides special classes for children with special developmental needs starting from preschool.