RACE is not forever: why children with autism are denied disability
A resident of the Krasnodar Territory has been trying for almost three years to get the diagnosis of "autism spectrum disorder" recognized for her daughter in order to register a disability. However, the psychiatric hospital sees no reason for this and refuses to accept the conclusions of other clinics, including the federal Scientific Center for Mental Health. Now the woman is suing the hospital. Meanwhile, similar situations are occurring in various regions across the country. Many parents are faced with the fact that young children refuse to be diagnosed with autism. Izvestia investigated why it is so difficult to get an ASD disability.
Why do you have to sue for autism
Natalia Dyakova, a mother with many children, told Izvestia that in 2023, her child was first diagnosed with autism in a private clinic. Then she began to seek official recognition of ASD at the regional level, but the specialized psychiatric hospital No. 7 in Krasnodar did not recognize the conclusions of her colleagues, defining the condition as "mixed specific disorders of psychological development."
Natalia did not agree with this and went to Moscow. According to the results of the consultation, the Federal Scientific Center for Mental Health (NCPH) made an interim diagnosis of "other common developmental disorders" — this is a disease under the ICD-10 code F84.8.
In the current ICD-10 in Russia, autism is designated by the code F84.0, but F84.8 does not deny this diagnosis and can also relate to the autistic spectrum, Elena Bagaradnikova, a member of the board of the NGO Kontakt, a member of the board of the alliance "The Value of Everyone", explained to Izvestia.
Natalia Dyakova was advised by the NMCC to return with the child in six months to clarify the diagnosis.
— Milana was 2 years and 3 months old then. The doctors at the NCSP saw clear signs of autism, but they wanted to make sure that it was really him," said the source.
Six months later, the family did not apply to Moscow: all trips are very difficult, so Natalia still hoped for recognition of the diagnosis in the Krasnodar Territory. But in the region, disability was registered only under the F84.8 code, without being diagnosed with autism. And for two years at once — until March 1, 2026.
During this time, the child's autism was confirmed by seven more doctors in various clinics, and when the girl turned four, Natalia went with her to the NCSP again. And they've already officially confirmed it.: this is autism, combined with cognitive impairment and ADHD.
However, even the unequivocal diagnosis of the federal scientific center did not convince the psychiatric hospital in Krasnodar. The medical institution again refused to accept the documents, and in 2025 Natalia Dyakova filed a lawsuit against him over the diagnosis, and then another one. The first meetings of the Pervomaisky district Court of Krasnodar in this case have already taken place. The next one is scheduled for Wednesday, June 24.
The hospital insists that in order to establish a definitive diagnosis and referral for disability, you need to undergo a day hospital or hospitalization. However, according to the law, this is not a prerequisite at all, and for a mother with a child with ASD it is also a very difficult test. Nevertheless, the doctors at the hospital in Krasnodar explicitly set such a condition, despite the fact that they had been observing the girl for three years. At the same time, Natalia Dyakova emphasizes, hospitalization does not guarantee a diagnosis at all: parents of other children shared with her that they did not diagnose autism after that.
A source told Izvestia that the psychiatric hospital really refuses to diagnose autism. He claims that this decision was allegedly made at the level of the regional leadership, so the situation did not change even after the change of the chief physician (David Gunba was replaced in the status of acting Nina Volkova after the scandal with the criminal case). The reason is the fact that "these children are expensive for the region," as parents "begin to demand certain learning conditions."
Moreover, according to the source, they try to let almost all such children through the hospital for the sake of payments that the hospital in this case will receive from the regional budget: 180 thousand rubles for each patient.
Izvestia sent a request to the Ministry of Health of the Krasnodar Territory. No response has been received at the time of publication.
A hundredfold difference depending on the region
In social networks, under one of Natalia Dyakova's posts, comments appeared from residents of other regions who faced the same problem: in particular, from the Volgograd Region and the Stavropol Territory. Moreover, as the mother of a child with ASD from Stavropol wrote, "autism in the regional psychiatric hospital (neuropsychiatric dispensary. — Izvestia) does not exist, disability is given according to other diagnoses." Many report that they have received unspoken information that they will not be diagnosed with autism before a certain age: five or eight years old.
Pavel Kantor, a lawyer with the legal group of the Center for Curative Pedagogy, a regional charitable public organization, notes that it is possible to understand psychiatrists who cautiously approach the diagnosis of ASD in a very young child, but there are no formal requirements for reaching a certain age to receive a diagnosis, as well as obligations to undergo hospitalization for this.
Natalia Dyakova told Izvestia that she knows of cases where parents of children with ASD have moved to other regions in order to receive help in accordance with their child's diagnosis. Indeed, the 2022 Russian study "The prevalence of autism spectrum disorders in the Russian Federation" showed significant 104.5—fold differences in the level of diagnosis of ASD depending on the region of the country.
According to Elena Bagaradnikova, the hundredfold difference in the prevalence of ASD by region cannot be explained biologically. This reflects differences in the availability and quality of diagnostics depending on the subject of the Russian Federation.
At the same time, the total number of reported cases of autism in the country is low: the Russian population-based study of the prevalence of ASD among younger schoolchildren, which was published in 2026, showed that statistically there should be about 22.2 cases of autism per 1,000 children in the country, but only 4.1 cases were officially registered. And a study by the Anton Foundation in 2024 reported that three out of four children with autism in the country either do not have a diagnosis or receive another one. As a result, more than 200 thousand children and families remain disconnected from the possibility of timely assistance and habilitation route.
Why children are not diagnosed with ASD
Daria Pereverzeva, a leading researcher at the Federal Resource Center for the Organization of Comprehensive Support for Children with ASD (FRC RAS) at MGPPU, explained that there is no biological test for autism and the diagnosis is made based on observing the child's behavior and analyzing his developmental history.
— In his assessment, the doctor should rely on the criteria set out in ICD-10 and the clinical recommendations in force since 2024. This makes it possible to unify the diagnosis. Nevertheless, the task of diagnosing ASD remains really difficult. This is due to the fact that the symptoms of autism can look very different depending on the level of intellectual development, the degree of speech proficiency, the ability to hold attention, gender, age, etc., she told Izvestia.
At the same time, the field of studying autism spectrum disorders is developing rapidly: based on new research data, criteria for the identification of ASD and approaches to medical, psychological and pedagogical care are changing. That is why it is so important that specialists regularly update their knowledge on the problem of autism.
Elena Bagaradnikova added that modern clinical guidelines on autism make it possible to reliably diagnose ASD from the second year of life, however, approaches are applied very unevenly in the regions. The reasons are different, including the training of psychiatrists, the lack of specialists with modern diagnostic techniques, etc.
Although the clinical recommendations of the Ministry of Health are mandatory for use in all medical institutions, in practice every psychiatrist is autonomous in making decisions and many doctors simply refuse to follow the recommendations, said Elena Lazutina, Director of Legal Affairs at the Anton Tut Near Foundation. At the same time, she stressed, if a person does not agree with the conclusion of the HDP, it can and should be appealed: first administratively through the chief physician or a higher authority, and if necessary — in court with the appointment of an independent commission examination.
The diagnosis of ASD can be established by a psychiatrist from any medical organization, even a private one, Elena Bagaradnikova added. After that, the clinic can independently issue and transfer a referral for a medical and social examination (ITU). This is explicitly provided for in paragraph 17 of the Rules for Recognizing a Person as Disabled, approved by Decree of the Government of the Russian Federation dated 04/05/2022 No. 588.
What will a child lose without a diagnosis
The lack of an official diagnosis deprives the child of access to support, explained Elena Lazutina. Autism is not treated with pharmacology, behavioral therapy, classes with speech pathologists and psychologists work here. At the same time, receiving services from the state is usually linked to the recognition of disability, and most special learning conditions — tutoring, an adapted curriculum, a resource class, speech therapy and psychological assistance at school — are available only if there is a diagnosis entered in the medical record.
"Without a proper diagnosis, care is often based on individual symptoms: speech delay, intellectual difficulties, hyperactivity, or undesirable behavior," says Elena Bagaradnikova. — This may not take into account the key disorders of social communication, adaptive functioning, sensory characteristics and the need for alternative communication for autism. A child may lose time, which is especially important for early care, or receive interventions that do not meet their basic needs.
If autism is encoded by another disorder, then children actually become invisible to statistics. This means that the region plans fewer specialists, educational places and social services.
Ulyana Mamokhina, a researcher at the FRC RAS MGPPU, added that making a diagnosis does not imply disability by default. It is set depending on the degree of disability. Children with ASD with a low need for support may not qualify for disability.
However, there must be a diagnosis: the ITU bureau cannot establish disability without it in principle.
— If a disability is established, it opens access to a wide range of rehabilitation measures, which are recorded in IPRA. All the activities of this individual program are mandatory for any government agencies," the source told Izvestia.
What other patients are facing this problem?
Many patient communities consider the actions of the ITU authorities to be unfair in relation to their diseases, confirms Pavel Kantor. This often concerns patients with severe behavioral disorders, in which case the ITU authorities do not take into account the need for constant supervision and establish "mild" disability groups — the second and third. Technically, these people can serve themselves, but in reality they require constant supervision.
— Patients with COPD and coronary heart disease also complain that the ITU requirements for indicators are too strict: it is very difficult for a person to live, it is impossible to work, but the formal indicators of tests and studies "do not reach" disability, — the expert specified.
Difficulties often arise in patients with mental and developmental disorders when their manifestations overlap, said Aisylu Saifullina, a psychiatrist and psychotherapist at the Open Mind clinic. Moreover, there is a risk of both overdiagnosis of a severe mental disorder and untimely recognition of a condition that requires specialized help.
Another thing is that the problem of autism is especially noticeable, since the races are very heterogeneous: one child may lack speech and have a pronounced intellectual disability, the other has intelligence and speech preserved, but there are severe violations of social adaptation, Elena Bagaradnikova emphasized.
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