Specialist in autism spectrum disorders Kathleen Taylor, who recently visited Moscow at the V International Forum “Every Child Deserves a Family”, told us what she teaches her Russian colleagues and why children with autism need summer camps.
Psychologies: One of your key joint projects with the Naked Heart Foundation is called Summer with Meaning. You train professionals to hold summer camps where children with autism come without their parents. Why are these camps needed?
Kathleen Taylor: I am sure that any person – a child or an adult – absolutely needs rest, time free from what we usually do, a change of scenery. And for children with special needs, summer camps are an opportunity not only to understand the very concept of recreation, but also to master important social skills.
The inability to establish simple communication with other people means that your opportunities in life are very limited. This applies to everything: education, employment and other things. The skills acquired in children’s camps can then be applied in all areas of life. It is an investment in their quality of life.
We were able to speak with several parents whose children have taken part in this program. It turned out that before that they had never had to send children somewhere alone for more than a couple of hours! How much stress is this for children with ASD and parents?
K.T.: Any mother, myself included, will tell you that raising children is always stressful. But without a doubt, being the parent of a special child is a whole different level of stress. Separation can be difficult for both child and parent. But the experience that a child gains in the camp is incredibly important.
Our task is to build a relationship of trust with parents and prove our professionalism to them, so that while their children are with us, parents can relax and take time for themselves. It almost never occurs in parents of children with autism.
Russian specialists were trained at your Rising Sun camp in Albuquerque. Did you get along easily?
K.T.: You have to understand that for them it was a huge culture shock. I mean not only the difference in the cultures of our countries in general, but also the difference in the cultures of working with autism. Cultural differences are always a multifaceted thing: it is behavior, language, and manner of communication …
Russian colleagues learn not only from me, but also from the guys themselves
When communicating with colleagues from Russia, I saw my task not in showing how to do it right, but in demonstrating to them how wrong. I saw it in smoothing out the differences between all these cultures – the culture of communication of autism, Russian culture and American. All of them must coexist harmoniously.
It was also important to show that there is great potential in these children with autism. And this Russian colleagues learned not only from me, but also from the guys themselves, who had a rest in the Raising Sun camp. Children are the best teachers.
What is your training program based on?
K.T.: We have decided to train our Russian colleagues in the so-called eight support strategies. This is a systematic approach to teaching children with ASD, the effectiveness of which has been proven by studies conducted in different countries, as well as in the practice of working with people with autism.
We give lectures, arrange practical classes and supervise Russian colleagues during their work in our camp in the USA. After returning to Russia, their work is regularly supervised by Tanya and Slava (Tatiana Morozova, clinical psychologist, Svyatoslav Dovbnya, pediatric neurologist, Naked Heart Foundation experts. – Ed.), and, it seems to me, they are very correct in their approach to the analysis of effectiveness learning and using new methods in practice.
It is very important to understand that these eight support strategies can be used not only at summer camp, but throughout the year. So this is a very important investment in professionals.
What do you remember most from your trips to Russia?
K.T.: Oh, for me, traveling to Russia for summer camps is almost the best thing that happens to me in a year! You come and see these specialists who recently visited the United States, not knowing about the existence of any of the eight strategies, and now they are actively putting them into practice! And that’s great.
Every evening, Tanya and Slava and I get together and discuss what we have seen during the day. As a rule, we find something that we would like to propose to correct, but we agree to wait and see. And the very next day, the Russian colleagues themselves correct their mistake without any prompt from our side!
It is important to understand that people with autism have a lot to contribute to our society.
This means that the experts themselves gather and discuss, analyze what works and what does not. It turns out that we gave them not only these strategies, but also the skills to solve difficult situations using these methods. This is a different approach to the profession – this is what we want to train people.
But we teach not only specific strategies. We want to explain that people with autism should not be underestimated. It’s not just about sensory integration, visual support, or applied behavioral analysis. It is even more important to understand that people with autism, sometimes so different from us, not only have the right to education, but also can contribute a lot to our society. It seems to me that this is what the foundation wants, so it is a great honor for me to work with them.
So you are talking about a change in attitude towards people with autism on the part of the professionals who work with them?
K.T.: Exactly. Methods are tools to help.
What advice would you give to a specialist working with children with special needs in Russia?
K.T.: You are at the very beginning of the journey. But there is hope that attitudes towards people with autism will soon change. Respect the parents of children with autism, they are the main experts in their upbringing and know the most about them. We can bring ideas and experience. But respect for the children themselves and their families is the most important thing.
What would you say to the parents of a child who has just been diagnosed with autism?
K.T.: In fact, it is more important not to tell them something, but to listen. It is very important. And only then can they be reminded that their child with autism is the same child with whom they lived before, despite the new diagnosis and the new “stamp”. The main thing is to help him develop his potential to the maximum.
They also need to be told that there is hope. There are very talented specialists in Russia who can support both you and your child.
It seems to me amazing how the Naked Hearts team gathers around itself and a common goal so many different people. I see that the foundation team is driven by the idea of making this world a little more tolerant of people with disabilities. And to be a part of this group of people is a great honor for me. And that is why I keep coming to Russia.
About the Developer
Kathleen Taylor (Kathleen Taylor) – occupational therapist at the Center for Developmental Disorders at the University of New Mexico at Albuquerque. Expert of the program of summer integrative camps for children and adolescents with ASD, organized in Russia by the Naked Heart Foundation. She has been working with autism for over 25 years.
All foreign experts who participate in the Foundation’s programs do not receive fees while working as volunteers.