There are no races for races: why there are few people with autism in Russia
Researchers from Montreal and Portland have stated a serious problem with overdiagnosis of autism — this disease is detected too often, which can have serious consequences for the healthcare system and the patients themselves. However, in Russia, experts believe, the problem is reversed: although statistically there should be 22.2 cases of autism spectrum disorder (ASD) per 1,000 children in the country, in reality only 4.1 are registered. At the same time, there are cases of overdiagnosis. Izvestia found out why there are problems with the definition of autism in children and what it is fraught with.
Why is there talk of overdiagnosis in the West?
Lester Liao, an associate professor at McGill University and an employee of the Montreal Children's Hospital, and Eric Fombonne, an autism specialist at the University of Oregon Health and Science in Portland, spoke about problems with overdiagnosis of autism. In an article in the journal JAMA Pediatrics, they questioned existing methods for detecting ASD — in their opinion, up to half of the children who were diagnosed did not meet the criteria for autism upon repeated examination by specialists.
Potentially, the fact that autism is detected too often can harm both children themselves and the healthcare system, which is forced to allocate its resources not only to those who really need help, but also to those who have become victims of overdiagnosis.
Among the behavioral features that often cause a diagnosis of ASD in the West, but in reality may not indicate it, Liao and Fombonne cite difficulties with maintaining eye contact and "tiptoeing."
What is the diagnostic situation in Russia?
In Russia, however, the problems are different.: according to Elena Bagaradnikova, a member of the board of the NGO "Contact", a member of the board of the alliance "The Value of Everyone", in our country "a pronounced lack of racial expression persists systematically."
She refers to the first Russian population-based study of the prevalence of autism spectrum disorder among younger schoolchildren, which was published in 2026. It showed that, according to estimates, there should be about 22.2 cases of autism per 1,000 children in Russia, while administrative data provided only 4.1 cases.
If the global average is one case per 45 people, then in Russia, according to official statistics, it is one case per more than 1.7 thousand people, said Ivan Martynikhin, a psychiatrist, head of the medical and psychological center "Solution", an expert at the Anton Tut Near charitable Foundation.
The fact that the disease is detectable below the actual prevalence is also confirmed by another study, Elena Bagaradnikova drew attention. In 2022, the Consortium Psychiatricum published an article entitled "The prevalence of autism spectrum disorders in the Russian Federation: a retrospective study," which analyzed data from official government statistical reports.
— The conclusions drawn by the authors of both studies are approximately the same: the detection rates are significantly lower than the global ones. So the problem is that a huge number of people with ASD are still not being identified on time and are not receiving the necessary help," the Izvestia interlocutor explained.
According to her, girls, children with preserved intelligence, adolescents and adults, as well as children with autism combined with speech, intellectual, anxiety or behavioral disorders, are especially often "lost".
The Anton Charity Foundation provides data from its own research, which was conducted in 2024 in Russia in general and St. Petersburg in particular.
"Its results show that a significant number of patients are not accounted for — three out of four people with ASD in the country either do not have a diagnosis or receive another one," Evgenia Petelchuk, Director of development at the foundation, told Izvestia.
However, over the past 10-12 years, the diagnosis of autism in Russia has improved, adds Ivan Martynikhin. Even with the current figures, which do not correspond to the global average, the number of officially diagnosed people in the country has increased by 584% during this time. In 2014, according to Rosstat, there were 13,897 people with confirmed ASD in the country, and 81,155 in 2024.
— This number is growing due to the training of doctors in the basics of modern diagnostics, public education, activities of parent communities, foundations and public organizations, — explained Ivan Martynikhin.
But universities still don't pay enough attention to the issue of autism, its diagnosis and therapy, Evgenia Petelchuk added. Psychiatrists often admit that the topic of ASD was given from half an hour to several hours during training as part of a general review of mental disorders.
Is there a problem of overdiagnosis in Russia
It makes no sense to talk about overdiagnosis in Russia, Ivan Martynikhin believes. If you start providing help on time, 20% of children will have no signs of autism by adulthood, and 30% will have mild symptoms. And this will not indicate that the doctors have made an incorrect diagnosis.
— This is the result of timely habilitation and training. This is precisely the purpose of early diagnosis — to provide timely assistance to the child and reduce the severity of difficulties by adulthood," the expert said. — Early care saves resources for both families and the state: The younger the child, the easier it is for him to master the necessary skills.
According to him, in order to effectively support the family, the diagnosis should be made as early as possible: screening — at 18 and 24 months, timely diagnosis of ASD — at two or three years.
However, Olga Nikolaeva, a special psychologist and director general of the Hogwarts Center for the Support of people with ASD, calls the situation with the detection of autism in Russia paradoxical in the sense that the country has a combination of hyper- and underdiagnosis depending on the region, organization, and even a specific specialist.
— It should be understood that the manifestations of autism are quite vague and very often secondary, that is, they can be caused by various causes. It seems that some specialists diagnose autism when they don't know what else to attribute these symptoms to. For example, the lack of eye contact, stereotypes, those same "wings", that is, repetitive movements of the hands, similar to the flapping of wings. They are often mistaken for "ironclad evidence" of a diagnosis, although in fact they do not directly indicate autism, she explained.
According to the expert, such manifestations often indicate sensory and social deprivation, but not at all about RACE — and they can be observed, for example, in orphanages or in hospitals where children are forced to stay without relatives for a long time.
— Therefore, when we observe signs of behavior in a child that are suggestive of autism, we should first rule out other causes. First of all, consult a neurologist," Olga Nikolaeva emphasized. — If all somatic and neurological causes are excluded, then we can already think about autism.
An excessive number of diagnoses are found in large cities, whereas in remote regions "old diagnostic techniques are used" and either varying degrees of intellectual disability or childhood schizophrenia are diagnosed. And the disparity between regions, according to Elena Bagaradnikova, is enormous.
— The prevalence of autism differs from the global median prevalence of ASD by about 40 times. Research has revealed regional differences in Russia by 104.5 times. The frequency of diagnosis varies from a minimum of 1.7 to a maximum of 177.7 per 100,000 population," she said. — This is primarily an indicator of the different quality of diagnosis, family routing, professional alertness and accessibility of care.
If a child or adult with ASD lives in the "wrong" region, they may not receive a correct diagnosis for years — or receive another one that is more convenient for the system, says the editorial interlocutor. Overdiagnosis in Russia is possible locally: in private practice, with a superficial assessment, when the diagnosis is based on one or two signs.
— At the same time, the discussion about overdiagnosis itself is important. One of the frequently cited arguments is the data that in some samples of children with ASD who had already been diagnosed, not all of them were confirmed during repeated specialized assessment: one publication reported that 53% of children met the criteria for ASD, while 47% did not, explained Elena Bagaradnikova. — But it is impossible to transfer these figures to Russia directly: our diagnostic structure, access to specialists and social incentives are different.
What is the threat of hypo- and overdiagnosis?
Elena Bagaradnikova noted that if ASD is not diagnosed, the child and the family waste time.: They do not receive early care, and they are deprived of access to the health and social protection system.
— A child's behavior is often interpreted as "pampering", "poor parenting", "laziness", "aggression", although sensory overload, inability to express need, pain, anxiety, or lack of an understandable environment may be behind this. As a result, the family receives not help, but accusations, and the child receives secondary violations: anxiety, school maladjustment, behavioral crises, burnout, and social isolation," she explained.
And early interventions — behavioral, communicative, sensory — are most effective during the preschool period, Evgenia Petelchuk emphasized.
— If this stage is skipped, further support will be a way to "catch up" with the result against the background of entrenched difficulties, — the expert warned.
And this directly affects the life path: each next stage — school, socialization, job choice — will require more effort and time, isolation, behavioral difficulties may increase, access to education may decrease, and in the future — to independent living.
If, on the contrary, the diagnosis is made incorrectly, then a person may receive the wrong educational and medical route, and the true cause of difficulties will remain unaddressed, warned Elena Bagaradnikova. For example, a child with hearing impairment, speech disorder, anxiety disorder, or ADHD may be offered an "autistic" route instead of the necessary diagnosis and therapy. However, these problems are much less pronounced for Russia.
— In general, support should be built not so much around the name of the diagnosis as around the functional needs of the child: communication, behavior, learning, self-care, sensory regulation, social adaptation. And this is also one of the answers to the question of what to do if the problem of overdiagnosis suddenly arises one day. The main task is not to argue whether autism has become "much" or "little", but to build a system where the child receives help according to his real functional needs. Diagnosis should be a tool of support, not a stigma or a formal pass to scarce services," the expert concluded.
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