Elisey Osin: “The main thing for a child with autism will not be a doctor, but a teacher”

Psychologies: You often have to tell parents that the child has autism. Is there any general reaction?

Elisey Osin: There is only one thing in common: this is very bad news. Moreover, there are several of them. The first is the actual diagnosis. Second: there are no drugs or instrumental methods that could remove this. Therefore, I specifically emphasize that if a child has autism, then he will grow into a teenager with autism, and then into an adult with autism. And of course, everything goes downhill for parents: ideas about life, about their own future, about the future of the child, the family. Therefore, feelings are usually quite strong. Although some already suspected something and come for confirmation. For others, on the contrary, this is a complete surprise, they do not even understand what developmental disorders are. Sometimes people start crying. And some very businesslike say: «I see, thank you, tell us what it is.»

• How close are you to autism?

Were there any unexpected reactions?

E. O .: One mother said, “Oh, thank God. I finally understood what was going on.» She always thought that it was her mistake, that she raised the child incorrectly, missed something serious, tried to catch up.

When you make a diagnosis, are you trying to sweeten the pill somehow?

E. O .: What is there to console you? That everything will be fine? But that’s not true. Put yourself in the place of the person who is told the terrible news. About death, about an incurable disease, about the collapse of all hopes. And then they say: «Well, it’s okay.» This is disrespectful to what is happening to a person at this moment. The best response is to just be with him. I look at the man, never hide my eyes. I try to sympathize. I say I’m sorry. Of course, I don’t make a stone face and say: “Your child has autism.” It sounds like a sentence and at the same time very abstract. I always try to explain how this diagnosis entails certain features of this particular child. For example, why it is precisely because of autism that he cannot learn to speak. I try not to isolate myself emotionally from people. It also helps me that many later say that it was important for them to hear this and that the state of uncertainty has ceased.

• “I would give everything for Andryusha to become like everyone else!”

Is there such a reaction as irritation and rejection of the diagnosis?

E. O .: At the reception, people usually behave with restraint, although irritation with the doctor is sometimes very great. But the sharpest feelings come later. There are different stages of experiencing bad news. Denial, aggression, rejection, submission. It happens that people begin to struggle with the diagnosis. Now we will do everything, invest all the money, build some kind of unprecedented treatment program that will fix everything. As a rule, these are very strong people. But the forces end sooner or later, and autism has not gone away, even if the child has achieved a lot. And they drop their hands. Therefore, it happens that after a year a person falls into despondency and real depression. Other parents admit that they hate their own children. They don’t want to live anymore. This is a terrible torment, also because they think that they are the only ones in the world, and their reaction is pathological. And it’s good to hear that it’s not. In general, I often tell parents that there are no irregular reactions. There may be wrong decisions, but none of the feelings a parent has is wrong.

Are the people at your reception ready to receive some constructive information, or are they too crushed?

E. O .: After a person has learned the diagnosis, somehow emotionally reacted to it, he usually asks what to do next. I’m waiting for this question. I tell you how people with autism can develop in different ways and how to achieve the greatest success. I say that there are specialists who can help. Parents are entering a new life for which they were not ready, and it is very important for them to find some support in it. I tell you what things to do so that the child, for example, starts talking, or to remove difficult behavior. I try to give some contacts, literature, links on the topic. Explain what is primary and what is secondary. For example, that the main thing for them will not be a doctor, but a teacher. He will teach you how to talk, how to behave, how to play. I tell you what to expect from such a teacher, how to understand whether he is good or bad.

• “Others have it for life, and we will cure it”

Sooner or later parents of children with autism meet. Acquaintance with comrades in misfortune makes life easier?

E. O .: In general, yes. There are many studies that say that mutual informational and simply even emotional support are necessary. It’s a fight against loneliness. It is very important to find people who share the same meaning with you. Therefore, communities — despite the mutual misunderstanding and tension that sometimes arise in them — help parents find each other and unite. But very often, dads and moms are not so much eager to share their own feelings as they have very specific questions. How can I teach my child to use the toilet? How to teach him to dress himself? How to remove aggression? It would be great if, in addition to the community, there were also small groups in which some experienced parent or trained professional could regularly answer these questions.

How do you live with the feeling that you are the person who makes the verdict?

E. O .: Sometimes there is a feeling of emptiness from having to tell people something that I would never want to hear myself. Usually, in about forty minutes, I begin to understand that I will have to start saying all this now. I continue to collect information about the child, trying to understand his complexities, and I’m still not one hundred percent sure. But I already have a diagnosis. And still I say to myself: “Oh no, Lord, if only it wasn’t this!” But for myself, I have not yet found a solution to how to alleviate what I heard. I just allow myself to sympathize.

In your observation, are there more people with autism?

E. O .: You can’t draw conclusions on your own impressions, because they are always conditioned by the situation. While I was working at school, I could say that there are few children with ASD, but many, on the contrary, with ADHD. And when I began to deal with autism and there is a stream coming to me all the time, it may seem that people with autism are all around. But my perception is greatly distorted due to the fact that I myself am in this field. Both of these are erroneous conclusions. But I can say with confidence that there are more informed parents who understand what autism is. They come with certain knowledge, ask about behavioral analysis, about schools. Here the situation is changing.