"Our children can't wait either": Ekaterina Men, President of the CPA, on ways to solve the problems of autistic people in Russia

- How did the past year, when many sanctions were imposed against our country, affect your work?

— We, like any non-profit organization that depends on the amount of funds raised, now feel problems with financing. Some of the companies with which we cooperated, for various reasons, left the Russian market.

Also, some scientific databases and journals have cut off access for Russian IP. And for us this is very important, because the CPA is engaged in a lot of research analytics. The reasons are clear, I feel annoyed, but we just need to keep working. I am not inclined to blame them, but special thanks deserve those who, despite everything, stayed with us. People do not cling to the conjuncture, do not say, now is such a time that it is not yet up to autism.

Refugee families with autism have come to us who need help like everyone else. Therefore, the choice is simple - either turn away from the wall and wait for the onset of old age, or look for alternative resources. We must solve the problems that are addressed to us on the hotline. How do you help a particular mother with an autistic child who can't cope enough to think about extended suicide? I am not exaggerating: such dramas are not the plot of our country, they are the plot of autism – here, in America, in Kiev, from which we are also addressed. Autism has no nationality, no traditions, it lives according to its own laws. Or he captures the situation and deprives the family of money, social ties, leads to the abyss. Or it is taken under control with the help of quite certain techniques and methods.

— What are the main areas now have to be supported?

" In addition to our typical work in the field of inclusion, legal and routing assistance to families, the introduction of effective interventions, this is of course the annual conference "Autism. Challenges and solutions". This platform is very important. On it, leading scientists present the latest research - both parents and specialists can intensively pump in three days. For everyone, it is an island of stability, it is knowledge that really helps families, and synchronizes the views of those who should help (doctors, teachers) with those who receive help (children with ASD and their relatives). And without such synchronization, therapeutic commands cannot be put together, and the child remains in the company of "swan, cancer and pike", which is stupid and only devours the precious time of the autistic child's life.

The conference is expected every year, so we are going to hold it. For this, we bypass all the obstacles that time offers. There was Covid, quarantine, plane cancellations, ideological conjuncture.

• © Photo from personal archive

— Why is the format of the conference so important?

- In medicine, an average of 17 years pass between a scientific biological discovery and its introduction into clinical practice. This is a scientific fact that applies to all diseases. In emergency cases, such as the Covid pandemic, this period was significantly shortened, so it was possible to achieve a quick effect. But our children with autism also cannot wait 17 years, people must be saved immediately.

And the conference is just a platform where data is presented as quickly as possible. It has helped us make Russia a country that has stopped hanging out in its tail when dealing with autism. If in 2013 we had 90% of foreign specialists, simply because there was nowhere to take ours, now these are domestic doctors, psychologists, teachers who have reached the world level and represent a truly brilliant experience and solutions. For young professionals and scientists, participation in the international conference is a great opportunity for development.

Parents who have a powerful experience of raising a child with ASD themselves get the opportunity to hear a clue from various sources – from the University of California or Chinese scientists. This year's conference will be held in April in Abu Dhabi, but our priority is always the Russian audience. Therefore, there will be a special platform for broadcasting live broadcasts, high-class translators, and everyone will be able to access the information.

Our simple principle is that everything that world science extracts should affect the fate of Russian children, who are no worse than any other. Now it is more difficult to organize than "just" a conference in Moscow. But for our target audience, it's an island of stability, the community needs to hear cool people who have come up with cool things in the field of autism – for us, this is the number one concern.

- Why did you choose such an exotic place?

— Since 2014, we have had scientists from the Arab world (Qatar, Saudi Arabia, Egypt). Autism research takes place in very different areas of the planet, and the results belong to universities or laboratories associated with very different countries. Of course, these are the countries where investment in autism research is high. And the prosperous Arab world has long been among them. Therefore, scientists from Arab research teams in the program of the conference "Autism. Challenges and solutions" have always been present.

The role of the Arab world in the entire autistic movement is very significant. Suffice it to recall that World Autism Awareness Day was initiated by the Princess of Qatar. The members of the Organizing Committee on the Arab side are completely open to topics – even those that, for all their importance, seemed quite bold to us.

For example, we were worried about the master class of the American expert Barbara Gross, who deals with the topic of puberty, bodily safety and the risks of sexual abuse against adolescents with autism (they often become victims). For colleagues from the UAE, the issues of sex education in autism are not only not a taboo topic, but an emphatically important one. They have the same problems with inclusion – there is a declaration, and little is known how to do it. So we're going to share data.

- Recently, you can see how scientific research on autism causes a stormy criticism of human rights activists. What do you think of such statements that autism is not a disease and should not be treated and investigated, but simply accepted as it is? Why is this approach dangerous?

"It may be surprising, but the radicalization of human rights protection risks manifesting itself in the field of autism. A pole has arisen in the world agenda when scientists are attacked under the guise of human rights protection. Any protection of different minorities begins with good intentions – to give a voice to some previously discriminated social groups. Including people with autism. And then the monopolization of that voice begins.

For example, the view that autism is not a disease. Of course, autism is much broader, like any disability, where illness isn't the only thing that determines well-being or collapse. But it has an objective medical component. If you say that autism does not have a purely pathophysiological basis, you are hindering science, doctors, the Ministry of Health, which evades with these mottos its direct responsibilities to create medicine for such patients.

To whom does such "human rights protection" help? Parents of a child with autistic disabilities? They do not need their children's rights to be defended by refusing to recognize the needs of children. They just need to recognize these needs as a problem that needs to be solved. And then unknown people come out and say " stop, this humiliates autistic people."

Fortunately, this has not yet become so entrenched in Russia, but the trend has reached us. I was also approached by such activists, your ABA therapy (and this is the main scientific tool for correcting behavior in autistic people) is training, it "violates rights and destroys the personality." Chemotherapy in oncology also affects the personality, even insulin in diabetes affects. Therefore, it is necessary to refuse treatment?

Often this is heard from the mouths of very highly functioning autistic people who do not look beyond the brackets of their personal experience. In response, I ask, "Did you go to school? Were you accepted into it or bullied by your parents by closing the school gate in front of your nose? Have you ever been not allowed on a plane? Were they kicked out of the playground?" No, they don't have that experience. And we have hundreds of children who have no opportunity to get to school, to use basic things. And they can't even get on the tram without therapy.

If a child bangs his head against the asphalt of the highway, the only way to stop it and teach the correct behavior, and then take him to school is behavioral therapy. And we are told that out of respect for the individual, it is necessary to leave a person with the "right" to beat his head on the asphalt and respect such a "feature".

Of course, this position is already beginning to blatantly hurt. At some scientific conferences, such activists disrupt lectures by respected scientists. In England, a large genetic study involving 10,000 families was blocked.

Perhaps genetic research frightens those who consider it discrimination?

- There may be confusion here that many people call autism a genetic disease, which, on the one hand, is incorrect, since autism is a multifactorial disease, and on the other hand, genetic factors are among the contributing factors.

The field of genetics provides a huge number of tools that allow you to work with the analysis of data about a specific, rather than generalized person. You can quickly classify the patient in order to choose medications, therapy that will help him. These are quite well-known things – no one arranges rallies about sequencing for the selection of bone marrow donors, for example, or before blood transfusions.

But in autism, completely vulgar manipulations are included, the word "genetics" is rapidly linked to the methods of the Third Reich. Some human rights activists are whipping up hysteria and shutting down a huge program on genetic research.

This approach is dangerous. With this approach, they will only hold colorful events, dress up football players in T-shirts, launch balloons, but children with ASD will be deprived of real help and leave them to beat their heads.

After all, there is another side, and we are quite familiar with its representatives. These are real nonverbal autistics who are now in college. They can't speak, but they write that they want the research to continue, they themselves investigate autism. They say: it is difficult for us to live with autism, we need to look for and improve everything that will facilitate our interaction with reality.

It's not about changing them, or ripping their essence out of them, it's about adapting, making life easier. And clearing vocabulary of "wrong" words and sabotaging useful work are the least conducive to this. And conferences such as "Autism. Challenges and Solutions" is the best way to build a dialogue and grope for a balanced position, where scientists listen to the target audience of their research and respond with their research resource to its true needs and demands.