April is considered Autism Awareness Month. NSU has been working on autism since 2013 when an initiative group of parents received funding as part of the 5-100 Project. The program was launched to train specialists who provide assistance to families with ASD children. For four years specialists fr om the NSU Center for Behavior Analysis helped 60 families with children with various degrees of autism spectrum disorder. Among them children with highly-functional autism as well as those with more serious manifestations. Still, the staff reported that after the first classes almost all of the children demonstrated significant positive changes that were previously unattainable. "I do not know any stories of failure", said Anna Trubitsyna, a behavior analyst at the Center.
Results are achieved with children having different degrees of autism. Progress is individual, but it is always attained if you work at it.
Trubitsyna continues, "When we first started working, we either did not know how to do something or we had just learned how to do something. One Mother applied, her daughter was 16-17 years old at the time. She was given an ASD diagnosis with a low degree of mental retardation. She could read, write, and play the piano but her capacity for speech was very compromised. She knew a million cards and could name the items on the cards but she could not support a dialogue even on the level of "yes" and "no". She could make several requests, like "give", but she could name a large number of objects. Her Mother did not know how to teach her how to do this, but we did and she learned to talk. Her Mother took her to an adaptive theater studio in Koltsovo. The people there almost collapsed with surprise when she said something and entered into a dialogue answering their questions. They were shocked because they had known her for many years. The girl is now 18 or 19 years old".
Parents reported that they achieve results they didn’t think possible in a short time. "Initially, it seemed to me it was unrealistic to achieve what the Center program described. We were surprised when Dima was able to do all of it in almost two months and fully master the program", said Olga Corman. "We started when Dima was 3.5 years old. Now he's seven and the difference between who he was when the classes began, and who he is now, is enormous. When we first came to the Center our child manifested terrible behavior and did not talk which is typical for such children. About a month later, we saw enormous changes. He was able to sit for three hours during the lessons without crying and even began to like them. In kindergarten, I never believed it was possible for him to spend three hours without a mood and to not get tired. He stopped having tantrums on the street. He began to pay more attention to children. Before he was not interested in his peers", explained Corman.
Now Dima can count, read and repeat with meaning what he has read. When he is in an unfamiliar environment, he behaves adequately. The problem behavior persisted, but it was minimized.
"He can be too moody and extraneous movements persist such as swinging hands. There are a lot of rituals, but we are dealing with them. For example, he is nervous when we drive along the road in the direction of my grandmother, but there are no tears like there were before. There is no big stress", continued Dima's mother.
A striking achievement was a trip to the dentist when in one visit Dima had three teeth treated without anesthetic.
Corman described the importance of this, "Many parents of ASD children treat their teeth using anesthesia because the children resist treatment. But anesthesia has a side effect, it can have a big "kickback" for the child. I was afraid of this so I prepared Dima, showed the videos and talked to him about what we were going to do. Dentists gathered around him when they learned about his diagnosis. Dima sat in the armchair nervous but he did not cry. He also did not push us away with his hands and did not bite which are all signs of great progress".
Anna Trubitsyna emphasized that Dima's success is the result of the parent’s work and not just the Center. It is important to work with the child at home every day. "Not everyone achieves these results. It all depends on the parents, how much they are willing to work. We are dealing with a family that works. In fact, not everything is always so rosy. Not everyone is ready to recognize this and to deal with it. When you bring a child to us we give them everything and then you work. Still, there are cases when nothing works".
Now the Center conducts training not only for specialists, but also for parents. Anna Trubitsyna describes the families from all over Russia who come to NSU as freelancers who must work. After the lectures, they even pass exams. "Most importantly, they practice, it's eight hours a day. They see how the child comes and how he tries to grab an interesting toy and hide it from me in the little corner. And then people see how I sit the child down and how he starts to fold sticks and cooperate and it makes an impression", said Trubitsyna.
These results are achieved through techniques that are based on applied behavior analysis (ABA) which is a scientific discipline. The theoretical foundations for this discipline were developed by the American psychologist B.F. Skinner in the middle of the last century. The effectiveness of ABA in addressing autism has been demonstrated in numerous studies. In countries wh ere the system for helping people with autism is well developed, the ABA methodology is the primary approach used by assistance programs.
Trubitsyna continued to describe their method, "The first thing we teach the child is to sit and not run away from the table. For example, a girl likes soap bubbles and a gym ball. First we sit down and place our hands to hold the child. Then we say, ‘look, well done, you have good hands, let’s give you a token’. In fact, she sat for only four seconds and collected four tokens. We then go and blow bubbles and play with ball for two minutes".
Today, employees at the NSU Center for Applied Behavior Analysis do not need to be shy about describing their Center as one of the best in Russia.
During the four years the project has been in operation, sixty families received help. Currently there are between 20-25 families getting training at the Center. Once they have visited the Center, many families stay engaged there. Parents realize that starting the development of a project for applied behavior analysis became a salvation for many families with ASD children. Based on the statistics for child autism and the underdevelopment of assistance to families, the need for this project is enormous.
