Living with autism in Russia: the prospects

Boris Mendelevich, Doctor, State Duma Deputy from Tatarstan, about autism

February 14 was Autism Sunday. The beginning of this tradition was laid in 2002 by a British couple, whose son was diagnosed with an autism spectrum disorder. They started an information campaign about the problem of autism to draw public attention to it. Now, with their help, every second Sunday in February, churches of all faiths around the world pray for children and adults with autism. And politicians and public figures discuss education and access to health services for people with autism.

State Duma deputy from Tatarstan, psychiatrist Boris Mendelevich in the author's column for Realnoe Vremya talks about how people with autism perceive the world and what changes can be expected in the near future in terms of their socialisation and treatment.

What is autism?

To begin with, I will traditionally give definitions so that each reader understands what is being discussed.

Autism is a disorder of mental and psychological development, in which there is a pronounced deficit of emotional manifestations and the sphere of communication. Autism and autism spectrum disorders are reflected in the existing medical classification of 10 revision diseases in the paragraph F84.

As a rule, the diagnosis is made to children at the age of 3-5 years, but early clinical manifestations also occur in children up to 3 years old. Its main signs are violations of social interaction, communication, and stereotypical behaviour (when the child repeatedly repeats the same movements or rituals). A mild form of the disease is considered a violation of eye-to-eye contact — the child does not look at another person when he is addressed, and does not react to the speech addressed to him. Also, such a child may not smile at all at any attempt to make him laugh, or, on the contrary, laugh when there is no reason for this. A person with autism lives as if inside himself and communicates with the outside world according to a special scheme.

There are different types of autism — some of them can manifest later than in childhood. Similar conditions, in which milder signs and symptoms are noted, are referred to as autism spectrum disorders.

It is important to understand that the diagnosis of 'autism' can only be made by a psychoneurologist.

How many people in Russia have autism?

The question of statistics in this case is not easy. The ministry of healthcare of Russia stated two years ago that the incidence has increased many times in recent years. For example, in 2014, 13,897 people with autism were registered in the country, and in 2018 — already 31,415.

But there are problems in the reliability of the figures. There is also an opinion that in Russia one person out of a thousand is ill with autism — and this is already an order of magnitude higher number than in the reports of the ministry of healthcare. Such a difference in numbers can be associated with a number of reasons.

  • First, visits to a doctor. This may sound strange, but not all parents turn to a neuropsychiatrist after finding some problems in the child. This is especially true for small localities and cases where autism is mild.
  • Second, the diagnosis. For pediatricians, this diagnosis is not the most popular, it is not always detected in a timely manner. Children with a mild form of the disorder are often not diagnosed with autism, they are simply considered somewhat strange and do not provide any specialised assistance.
  • Third, there are also reverse situations when adults with severe autism are diagnosed with schizophrenia.
  • Fourth, there are still numerous autism spectrum disorders that are not always diagnosed. Indeed, you won't take any of your strange acquaintances by the hand to the doctor, will you?

The problem of diagnosing autism is quite serious, because only a diagnosed patient has a chance to get qualified help.

What is the resason for autism?

Despite that in the 21st century medicine is making breakthrough after breakthrough, autism still remains a 'white spot' in the science of treating the human psyche.

The exact causes of the disease are still unknown. It is believed that the main prerequisites are a genetic predisposition (for example, when there are already autistic relatives), oxygen starvation suffered during pregnancy or during childbirth, infectious diseases (rubella, cytomegalovirus). Many scientists believe that autism is an inherited pathology that is more likely to develop in children in families where autoimmune diseases are traced. There are a number of toxic factors that affect a woman during pregnancy, which can contribute to the appearance of a predisposition to autism.

But it is known for sure that vaccination does NOT lead to autism. For many years, scientists from different countries have been trying to identify a cause-and-effect relationship between vaccines and autism. Each time the samples increased, but no connection was established. The only study that appeared in the Lancet magazine in 1998, which claimed a direct link between vaccination and autism, was eventually withdrawn from the journal and found to be unreliable, refuted. It is not surprising that such a high-profile article aroused the interest of other specialists, and they, in turn, decided to conduct their own research. And no confirmation of this result could be found.

How does an autistic person perceive the world?

With a severe form of autism, a person often can not connect the details of any actions into one chain, can not distinguish animate objects from inanimate ones. The surrounding external factors (touch, light, sound) can have an irritating effect on a person with autism, so patients often withdraws into their shelf and sometimes refuses to make contact even with close people. He creates his own structural logical connections, sees the world in his own way. His world is subject to certain algorithms, but these algorithms are alien to other people and are not always clear.

People with autism do not recognise sarcasm and irony, perceive information directly, and it is difficult for them to read the emotions of other people. Even those patients who have only a mild form of the disease or just an autism spectrum disorder experience difficulties in socialising and communicating with other people. By the way, it is easier for them to communicate online — where there is no need to smile and read emotions directly.

Is autism treated?

Unfortunately, autism is an incurable condition. However, with the right approach, a person with autism can develop skills and socialise it as much as possible. The development of skills and adaptation of such person to life, as a rule, includes behavioural correction, the work of a speech therapist, the development of self-service skills and drug therapy (if necessary). Complex work really often has a noticeable effect, simplifying interaction with the environment.

Undoubtedly, each case is studied individually by specialists, and only after that certain decisions are made, aimed, in particular, at correcting behaviour. However, there are quite a few appeals from parents who are not satisfied with the existing opportunities of Russian healthcare in this direction. Indeed, there is a lot to grow here and attempts are already being made.

For example, just a couple of weeks ago, the Russian ministry of healthcare was sent a draft of clinical recommendations on autism spectrum disorders in children, prepared by experts of the Association of Psychiatrists and Psychologists. If the project is approved by the ministry of healthcare, Russian doctors will get the opportunity to rely on scientifically confirmed data in their appointments, the developers emphasise. It is expected that the document will radically change the approach of treatment. For example, the authors note that the document clearly states that no drug that can affect the key symptoms of ASD is currently approved, and that the main methods of treating ASD are non-drug: behavioural, educational, and psychological interventions.

Among the comprehensive intervention programmes, the following are recommended:

  • programme based on the principles of applied behaviour analysis,
  • the Denver model of early intervention for the development of speech and cognitive skills and adaptive behaviour at the age of 18-48 months,
  • inclusive LEAP programme to develop cognitive, speech, and social skills, as well as reduce the symptoms of ASD in children over 4 years of age;
  • TEACCH programme for improving social behaviour and reducing the frequency of unwanted behaviour, developing cognitive, verbal, and motor skills for children and adolescents with ASD.

What about foreign states?

In many developed countries, work with people with autism has been put on track and is conducted quite successfully. As a rule, a set of measures is applied there, which includes both the work of medical personnel (for example, a pediatrician, psychologist, psychiatrist, neurologist, speech therapist, specialists in fine motor skills, general physical development interact together on the basis of accepted standards), and communities, active groups, charitable organisations that help the family to pass this difficult path.

Much is said about that people with autism are able to socialise. Not all of them, but many of them can live independently — depending on the severity of the disease.

There are popular myths that there are many talented programmers among autistic people. It's just a myth. But the truth is that some IT companies are really actively interested in people with autism spectrum disorders.

In 2011, the company Auticon was founded in Germany, providing IT consulting services. It was one of the first to actively hire people with autism spectrum disorders. The company's website says that due to their characteristics, people with Asperger's syndrome are able to detect even the smallest flaws in the software.

In May 2013, the German IT company SAP opened 500 vacancies for people with autism as part of the Autism at Work programme. According to the company's management, among autistic people, there are really talented programmers who, thanks to their penchant for ordering and increased attention to detail, are better than others at detecting errors in the code. The company even runs special rehabilitation centres where autistic people can get the basic skills they need to live independently. In particular, they are taught to rent a house, use public transport, open bank accounts and fill out documents.

In April 2015, Microsoft also started a programme to hire autistic people. Immediately after opening the programme, the company received more than 700 CVs and hired 11 candidates in the first days. Microsoft offers autistic people full-time employment and a competitive salary, just like any other employee.

Of course, all these examples are not about all cases of autism, because many patients are not able not only to work in IT, but also to serve themselves elementary. However, it is possible and necessary to work on improving the quality of life of patients with this disorder.

In Russia, all this work is only at the very beginning of the journey…

By Boris Mendelevich

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