Families with ASD complain about a lack of doctors and money for treatment

April 2 is World Autism Awareness Day. By this date, the charity foundation “I’m Special” published a study about the problems of families where children were diagnosed with autism spectrum disorder (ASD). As it turned out, almost 100% of parents of “special” children noticed developmental deviations early, but doctors were not always ready to make a diagnosis and give the necessary advice. State medicine does not have enough specialists, so families have to turn to private doctors. Specialist of the National Medical Research Center named after. The Serbian Ministry of Health of the Russian Federation believes that the problem is often the reluctance of parents to contact a psychiatrist, even with a direct recommendation.

To conduct the study, the team of the charity foundation “I am Special” invited sociologists. Together, they interviewed parents whose children were diagnosed with ASD for a year—more than 412 families from 152 cities and 31 villages in 67 regions. The methodology included telephone surveys, as well as in-depth interviews with parents and representatives of the expert community.

Experts noted that in most cases, parents show early concern about their child’s health. 98.3% of respondents noticed developmental abnormalities before the age of three and consulted doctors about this. However, 6% of parents did not receive any recommendations at the first visit, another 28% received doctor’s advice to “monitor the child.” 17% of respondents received consultations on raising a “special” child, 29% received consultations on methods of therapy and correction, and 42% of families received consultations from specialists specialized in ASD.

As a result, only every tenth child (9.3%) received an official diagnosis before the age of two inclusive, and more than half of the children (56%) received it at three or four years of age. The foundation emphasizes that the timing of diagnosis is very important. Clinical experience shows that about 20% of children with ASD who received therapy from the age of two to three were able to study in a general education school program, and 60% in a correctional program. Among children diagnosed after six years of age, only 25% attended a correctional school for the purpose of social adaptation; the rest were forced to study under individual programs. For 60% of families, obtaining a diagnosis was associated with various difficulties. Parents mentioned the long search for qualified specialists, doctors’ ambiguous interpretation of the child’s behavioral characteristics and other signs, as well as the reluctance of doctors to diagnose ASD.

The authors of the study, based on the survey results, came to the conclusion that the need of families for defectologists and speech therapists is 20% greater than their availability, and the shortage of psychologists and special education teachers reaches 69%. Residents of small towns and rural areas are practically deprived of access to a system of continuous support for children with ASD – on average, every fourth family is forced to seek help from out-of-town specialists. More than 60% of families experienced difficulties in enrolling their children in preschool and school institutions.

The study allowed us to assess the level of use of paid services. Most parents contacted a government medical organization for the first time (88%). But after receiving the diagnosis, more than half of the families visited private clinics (59%), and two-thirds also visited private teachers (67%). On average, 64% of specialist consultations were received by families on a paid basis. And the share of paid lessons with a child averaged 70%. Among other things, parents were asked whether they had to look for funds for treatment, classes, consultations of the child – for example, ask for money from funds, organize collections, take out loans. 60.9% of families answered this question positively. “We already have almost a million worth of loans,” the authors of the study quote one of the respondents. “We came up with the idea of ​​putting a box in stores to collect money for our son,” answered another respondent. One of the participants, after completing the interview, admitted: “There was not enough money to provide for the child – and I sold my kidney.” The issue of money is especially acute for single mothers (11%) and families where the child’s father does not help financially (10%). In 18% of families, providing for a “special” child depends only on the mother.

The demand for diagnostics and help clearly exceeds supply, says child psychiatrist from St. Petersburg Stepan Krasnoshchekov: “According to global statistics, 1% of children have ASD. Thus, in St. Petersburg there are approximately 10 thousand children with ASD. All these families need to do something – and many are not satisfied with the answers of doctors in state psychoneurological dispensaries. That’s why they go to private clinics.” According to Mr. Krasnoshchekov, currently in the field of public medicine there is no “adequate psychological and pedagogical assistance” – and he gave an example of ABA therapy (applied behavior analysis, the gradual introduction of necessary skills into a child’s life and their consolidation with the help of encouragement). Let us recall that current clinical guidelines for the treatment of ASD mention both ABA therapy and alternative communication PECS (Picture Exchange Communication System, a system of communication through picture cards). But at the end of March, the Russian Society of Psychiatrists published a draft of updated clinical recommendations, which states that ABA therapy can sometimes be useful, but “in a number of cases” it is “not only useless, but also harmful”; The document calls the PECS system ineffective. As Kommersant reported on April 1, the project drew criticism from parts of the medical and parental community.

“Now families can receive from the state nootropics – ineffective and unstudied, physiotherapy – ineffective and unstudied, defectologists and speech therapists – effective, but clearly not at the level at which it is necessary,” Mr. Krasnoshchekov lists. “Probably the best way the state helps at this stage, this is registration of disability: with the money received, you can pay for at least part of the child’s classes.” He noted that parents of “special” children themselves often need psychological help, and, if necessary, consultation with a psychiatrist.

Some of the identified problems can be solved if a federal program to help children and adults with ASD is created, says Alexandrina Khaitova, president of the “I am Special” Foundation: “Its goal should be to help every “special” family at all stages: from diagnosis to further ongoing support, assistance in finding employment and realizing the potential of a person diagnosed with ASD.”

Leading researcher at the Department of Forensic Psychiatry and Social Problems of Children and Adolescents, National Medical Research Center of Psychiatry and Narcology named after. V.P. Serbsky Ministry of Health of the Russian Federation Lev Perezhogin noted that, according to the departmental order, as part of the medical examination, the child should be examined by a psychiatrist at 2, 6, 14, 15, 16 and 17 years old. “Not all children are subject to examination at two years of age, but only those who, when undergoing screening, fall into the risk group for the formation of developmental disorders,” Mr. Perezhogin clarified. “Screening is a questionnaire for parents, which takes a maximum of half an hour to fill out. If autistic spectrum disorder is suspected, parents can independently consult a psychiatrist.” The problem, in his opinion, is that parents “avoid asking for help,” even if they are referred to a psychiatrist: “In the best case, 30 to 50% of those who are recommended according to the results of a survey reach a doctor. Thus, unfortunately, precious time is lost.”

Natalya Kostarnova, Kirill Klyuchnikov