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There are more and more people with autism, and without our help they will not be able to cope with adulthood. But communication with special people also gives us a chance to fill an important “valency”, learn empathy and go beyond the rational world.
Peter and Paul Fortress, Neva embankment, Peter’s house. Near the house of Peter, in the courtyard of a residential building – a staircase to the basement. Here is a center for adult autistics, which was founded by Lyubov Arkus and is called “Anton is right here.” Tutors lead the students of the center to classes like children, by the hand. This is also part of the lesson – to master the city, learn to ride the subway, cross the street. “Hello,” the smiling girl at the reception says, and the day begins.
The space is partitioned off with canvas curtains into squares: a locker room, a sewing workshop, a pottery, a felting workshop … A kitchen, a common room and a chill-out – a room where a hammock hangs and no one will touch you if you need to be alone.
Among the students there is a young man who walks quickly around the center, shouts something, tries to find something important on the phone and never finds it. There is another who mutters in a low voice: “I’m late, I must have let everyone down, I’m very ashamed, forgive me,” although he was not late at all. There is a girl who is afraid to move from room to room. Before stepping over the threshold, she throws a plush rabbit forward and only then goes herself. And there is another girl who is just afraid, without a hare. And there is an adult man who bites his hand every now and then from excitement. And another, like a red-haired Viking: standing in the corner and silent. And the third one is standing against the wall, looking around apprehensively, and then suddenly sits down at the piano and starts playing – playing complex pieces well. For each of them in their own way, but the world is hostile, uncontrollable, nothing can be understood. However, here, in the center, it is easier.
learn life
Pictograms structuring time hang on the wall. First there will be exercises, then classes in the workshops, then lunch, a general lesson, tea, and then home – all this is depicted in pictures, and therefore calmer. While exercising, they will pat themselves on the shoulders, stomach and legs, gradually defining the boundaries of their own body. Walk together in a circle and randomly throughout the room to distinguish subordinate actions from arbitrary ones. Dance in pairs to learn how to communicate. In the workshops they will sew, draw, sculpt, that is, learn the expediency of actions. They will make crafts under the guidance of craftsmen and tutors – they will learn how to communicate with people. At dinner, they will eat with a spoon and fork, that is, they will learn to observe conventions. It works. An autistic person who has learned all this can lead a more or less normal life.
Here is the topic. Didn’t speak until the age of five. Now he comes to the center to work with students in mathematics. PhD student, athlete, photographer. It works.
Here Shurik is baking pancakes in the kitchen. He succeeds, and he is happy that he succeeds. When in a year or two Shurik and three more students learn how to cook properly, Lyubov Arkus will arrange a small catering company for them: of course, not to serve embassy receptions, but, for example, film crews. Shurik will have a salary, a work book and, if he still manages to arrange an apartment with accompanied accommodation, an ordinary life instead of a psycho-neurological boarding school.
Read more:
- “People with autism have their own strengths”
There is a whole science about how to teach a person with mental features everyday skills. It’s called AVA. Why, for example, does not the speaker speak? Does not hear? Hearing but not understanding? Understands but cannot answer? Maybe, but don’t want to? Having learned by observation and testing the cause of dumbness, the teacher determines what exactly can motivate the student to overcome dumbness. Communication? Weasels? Computer games? Oatmeal cookies? Everything that can motivate a student should be at the disposal of the teacher. Then the student will try. But nowhere in books about ABA have I read that a teacher can doubt the value of the rational world and admire the madness of his ward.
Natalia Manelis, psychologist: “Change their lives for the better”
“ABA (applied behavior analysis) is an applied behavior analysis that can be used to correct the behavior of any autistic person: both an adult and a child*. The method is based on the operant learning theory of the psychologist Burres Skinner. ABA is a procedure that helps to keep autistic people from unacceptable behavior and motivate them to accept acceptable, develop useful skills and reduce unwanted reactions. With the help of ABA, those who are speechless are taught alternative ways of communication, such as communicating using a set of pictures that can be combined into sentences. In order for the result to appear, you need to practice several times a week according to an individual plan (from 6 to 25 hours, depending on age). It is important that training takes place not only at the table, but constantly, for example, during a game or a walk.” N. M.
*You can learn more from the book “Children’s Autism and ABA” by R. Schramm (Rama Publishing, 2013) and on the site specialtranslations.ru, where translations of special literature are posted.
Кто любит блины – не опасен
But there are doubts here. The walls of the “Anton is right here” center are covered with quotes and sayings from students. So insane that madness borders on wisdom. “You can always take more than nothing.” “Feelings are complex and don’t always make sense.” “One of the most serious losses in a battle is the loss of a head.” “I wish you to find all this before Thursday.” “Who loves pancakes is not dangerous.” “Hence the moral: I won’t figure something out.”
“You see,” Lyubov Arkus says, “everything I read about autism concerns children. There are no adults with autism in our country. When a child with autism grows up, they are diagnosed with schizophrenia or mental retardation. When does it happen? At 18 years old? At midnight with the twelfth stroke of the clock? All the ABA specialists with whom I spoke are confident that their methodology, which is successfully applied to children, can automatically be transferred to adults. But adults are another matter. Their social intellect is not developed, like in children, but their personality and sense of self are adults. Now, suppose you find out that a person likes oatmeal cookies. But if you want to force him to study for oatmeal cookies, then he looks at you with such eyes that he becomes uneasy. He seems to be saying: “What is it, you wanted to buy me for oatmeal cookies?”
From the long and detailed story of Lyubov Arkus, it follows that the “Anton is here nearby” center is not based on the fact that Arkus is familiar with ABA, but on the fact that she has experience of successful and therapeutic communication with Anton. The motivator for a student to master social skills is not oatmeal cookies or computer games, but the center itself, communication with tutors and masters. The main thing is to make contact.
– Like this? I ask. – How to establish contact with a person who does not make contact?
– Receiving environment… Refuse these things of ours… We enter into relationships with other people, having within ourselves a set of dramatic schemes and characters.
Do we always play someone?
– Well, sort of. So, autists are proto-characters. People whose essence is not dressed in anything, whose innermost is not hidden in any way, is not protected. If you tell Anton on duty: “Hi, how glad I am to see you,” he will be frightened because your words about joy will contradict the lack of joy in your eyes. Perhaps the challenge of autists to the world lies in the fact that it is impossible to replace empathy with technology and methodology with them. Understand?
“I don’t understand,” I try to lie, because it would be easier for me to write about the technique than about empathy.
Lyubov Arkus continues:
– When I made a film about Anton, I received a lot of letters, thousands. And often they began with the words: “Anton Kharitonov is me.” Understand? Once, during the filming, I saw Anton’s despair, I saw how this despair was terribly expressed. I looked at him, and for a second it seemed to me that I was looking at myself in the mirror. I look and see not my current self, but that better self that no longer exists in the world, which I had to train and make socially acceptable a long time ago.
Conversations of the wounded
Fifteen tutors work at the Anton is Right Here Center. Two, despite their efforts, fail to establish contact with their students and make their social skills develop.
“Not because they are lazy,” Arkus says. – They try, sit with the students hand in hand, take them home. But there is no contact and no development.
For the rest, it turns out.
Take Rosa for example. She teaches gymnastics. It’s fun to talk to her, because she seems to be running somewhere or dancing all the time. As a child, I tried to play chess, but I couldn’t, because you have to sit at the board. Then I tried to study psychology, but it was unbearably boring that the patients did not dance at all. Inside it is like a motor, from which she gets tired. And here in the center, students dance with her, but slowly, as if in honey. And Rosa says that she likes to catch moments of stopping.
Or Anya. Here in the center, she clearly sees that someone needs her. She says, “I need proof that I’m alive.” Or Elya. She keeps a video chronicle of the center. He says that he knows how to follow conventions, but he doesn’t like it very much. And here in the center it is easy for her to see children’s motives in the actions of adults and get less angry. Or Misha. Here in the center he is trying to be understood. Or Philip. He is 27 years old. All his life he earned by knocking on the subway on the drum. Before coming to the center, I could not think of a job that would make me get up every day and work regularly. Money was not a sufficient motive. And helping autistic people is a sufficient motive.
And you only need to look at the cook Vitalik, who most successfully taught the student Shurik to bake pancakes. He’s vegan and hipster, covered in tattoos and piercings.
“Don’t you think, Lyuba,” I ask Arkus, “that your successful employees are people with oddities themselves?”
– With valency, I would say. With an open channel of the soul, which is ready to accept and understand the other.
– Valency – what is it? Wounded? Vulnerability?
“I didn’t mean to say that. But apart from being wounded and vulnerable, I have not yet met any other valency. My tutors are not flawed people, not traumatized, but once they found out where their innermost – a vital organ – was.
“Anton is here”
This rehabilitation and adaptation center for adults with autism is run by Lyubov Arkus, film critic and author of the documentary of the same name*. The hero of her film, Anton Kharitonov, is one of the center’s students. The film, if not cured Anton, helped him a lot: at the beginning of filming, he was a mentally ill person in a serious condition, now Anton is a pleasant person with special needs. The task of the center is to help people like Anton. Students visit the center for free, so it always needs the help of philanthropists. V.P.
* The center was opened in December 2013 by the Exit in St. Petersburg Charitable Foundation (outfundspb.ru) with the support of Channel One.
A mounth later
A month has passed since my visit to the “Anton is right here” center. All this month, I think that our conversation with Lyubov Arkus is too ahead of its time. We discuss the life of autistic people as if every Russian school has an ABA class and every locality has a center for autistic people. In fact, the methodology is practically unknown, there are only a few ABA classes in the whole country, the center for adults is a desperate experiment. In fact, discussing the intricacies of the socialization of autistic people now in Russia is like talking to a starving person about diets. Most autistic people do not receive any modern qualified help at all and have no prospects, except for a plant life in a psycho-neurological boarding school.