Autistic parents horrified by new clinical treatment guidelines

For several days now, emotions have not subsided in the community of parents with children with special needs. The cause of the storm of indignation was the draft of new clinical guidelines for the treatment of autism spectrum disorders (ASD). A completely new (or rather, well-forgotten old) approach to the treatment of patients with ASD, who are mainly children, is proposed: they are literally equated with patients with oligophrenia and are prescribed to be treated with haloperidol.

Autism spectrum disorder (ASD) or autism refers to neurodevelopmental disorders. ASD is manifested by features in development and behavior caused by an imbalance in the perception of external stimuli, as a result of which a person reacts extremely sharply to some events and phenomena, while others simply do not notice. This leads to problems communicating with others, difficulties in adaptation, learning, work, fixation on internal problems, reclusiveness and poor expression of emotions.

The severity of symptoms (from their virtual absence to the patient’s complete dependence on care) depends on the type of autism. Until the 1980s, autism was considered a form of schizophrenia, but today it is established that these are different pathologies. Every year, the world sees an increase in diagnosed cases of ASD by 7-10%. In the early 2000s, it was estimated that approximately 1 in 130 boys and 1 in 150 girls are born with ASD. The latest data from the American CDC provides different statistics: every 59th American child in the United States is diagnosed; boys – 4 times more often than girls.

According to the Federal Resource Center for the Organization of Comprehensive Support for Children with Autism Spectrum Disorders of the Moscow State University of Psychology and Education as of 2022, there are 45,888 people with autism living in Russia. At the same time, according to the Ministry of Health of the Russian Federation, the prevalence of ASD in the child population is 1%, that is, there should be at least 300,000 children with autism in Russia. This means that about 85% of patients do not have a diagnosis and do not receive help. With adults, the situation is even more complicated – officially there are 593 adults with autism in the Russian Federation, although there should be at least a million of them – because autism cannot be treated and does not disappear after 18 years.

As the Autism-Regions Association told MK, early diagnosis and early help, education, preparation for adult life and life in society – at all these stages, most people with ASD need support. Meanwhile, problems surround such patients from childhood: from difficulties in making a diagnosis and receiving competent therapy, to the perception of such people in society. “We do not have high-quality training of medical specialists in universities, we do not have competent teachers, and young specialists are not taught the values ​​characteristic of an inclusive society. As a result, we get doctors and teachers who believe that autism does not exist or that it should be treated with antipsychotics, and that children should be hospitalized, that the parents are to blame for the child’s diagnosis, that children with autism are unteachable, that inclusion reduces the quality of education of other children, etc. d. Teachers bring these same beliefs to kindergartens and schools,” says the expert.

Ensuring that a child with autism can receive support using approaches that actually work (and evidence-based) requires a lot of effort from the family. Medicine has not come up with a way to cure autism, and there are no pills that even eliminate the symptoms of autism, but this does not mean that such patients cannot be helped. Autism is not cured with pills, it is “cured” with intensive training. “There are psychological and pedagogical methods with which any child with autism can be taught – even if he does not speak or has severe behavioral disorders – to learn, communicate with peers, observe social norms, and teach an adult work skills and the skills to live as independently as possible “- continues the head of the department of communications and media relations of the Association Ekaterina Zalomova.

And although new methods are not taught in universities, thanks to the efforts of the parent community over the past 10 years, hundreds of educators, teachers, tutors, psychologists, speech therapists, social workers, and doctors have been trained in methods based on applied behavior analysis (ABA) – according to numerous studies, today these methods are most effective for autism spectrum disorders. And the latest clinical recommendations (CR), developed by the Association of Psychiatrists and Psychologists and introduced in 2020, are based on psychological and pedagogical methods based on PAP. As a result, they gradually began to be introduced into kindergartens and schools. In addition, the Kyrgyz Republic adopted in 2020 significantly improved the situation with identifying the risks of autism in young children and with early diagnosis, allowing thousands of children with ASD to begin receiving help as early as possible. “Based on current clinical recommendations, psychiatrists for the first time began to recommend psychological and pedagogical methods of habilitation for children with autism, the effectiveness of which has been proven by science. Teachers listen to the recommendations of doctors, and children receive help in kindergartens and schools with the participation of parent organizations. Parents of children with ASD note a clear increase in the availability of help for our children.

However, by law, clinical guidelines must be reviewed every three years. And now a draft of new CDs has appeared, developed by the Russian Society of Psychiatrists (RSP), which made the hairs of parents and many experts stand on end: after all, it throws into the past all the achievements and the established system of helping people with ASD, since it denies and does not recommend interventions whose effectiveness proven and which are already being implemented both in medical institutions and in schools and kindergartens in different regions of Russia. And at the same time, he recommends treating children with autism with an outdated drug with a bunch of side effects – haloperidol. This, according to experts, can turn them into plants. “We are afraid that our children will again be treated for autism with pills, with serious side effects, they will be forced to stay in the hospital, isolated, instead of teaching them the necessary skills and helping them to integrate into society. For children with ASD, this is a direct path to a psychoneurological boarding school, because without quality support they will never be socialized and will not be able to live in society. For our projects, which we have been developing for years, helping schools, kindergartens, and our state create opportunities for our children to learn, communicate and work, this will be a dead end, and maybe the end,” the parents say.

As one psychiatrist told an MK observer on the condition of anonymity, the current clinical guidelines have a high level of evidence and contain the most gentle pharmacological approaches: “Their main attention is paid to non-drug treatment methods – correctional pedagogy and the development of cognitive abilities and social adaptation in children. New CDs have a very low level of evidence and, unfortunately, contain many falsifications. For example, they contain haloperidol, a first-generation drug with poor tolerance, which the authors call safe, and as proof they offer links, clicking on which allows you to see that there is no talk of safety there. In addition, applied behavior analysis (ABA therapy) is criticized, although it is used throughout the world and is the main one. The proposed CR are far from modern medicine, they are unsafe, threaten the health of children, and their use does not meet modern ethical requirements accepted in medicine. In fact, they propose to punish children for their illness.”

The project caused a serious resonance in the parent and professional community; more than 900 reviews were left on the portal for public discussions of draft clinical recommendations – unprecedented activity for this resource. The Autism-Regions Association sent letters signed by 76 parent NGOs to the Ministry of Health, the Government and the Presidential Administration with a request to pay close attention to the situation and not allow the adoption of a project that violates the rights of people with ASD to quality care in Russia.