Autists account for one per cent of the world’s population, say India and Russia experts. If this assessment is correct, there are about 1.5 million autism cases in Russia and up to 13 million in India.
The medical experts from India and Russia were discussing alarming rise of autism cases last week via videoconference, organized by Sputnik news agency and radio. The title of the discussion was “Autism: Research and Applied Support and Educational Technologies for Russia and India.”
“Both countries are beginning to discuss autism growth rates,” said Natalya Tyurina, moderator of the videoconference.
The term “autism” was coined in 1938, with Samuil Mnukhin offering the first scientific description of the disorder’s symptoms in 1947. For 60 years, the condition was considered rare and even exceptional, but the situation changed in 2005 when experts estimated that there was one case of autism per 250−300 newborns.
Specialists all over the world explain autism and autism spectrum disorders (ASD) by disrupted communications networks. At the same time, research of the past few years shows that the symptoms of ASD are similar to those of numerous disorders.
Therefore, it is necessary to classify autism in line with its true biological causes, rather than behavioural patterns, said Tatyana Stroganova, head of the Centre of Neurocognitive Studies and a professor at the Faculty of Differential Psychology and Psychophysiology of the Department of Clinical and Special Psychology at Moscow State University of Psychology and Education.
Experiments with animals show that it is possible to repair damaged genes that are associated with ASD. “This amazing information defies studies of the human body,” she noted. Unfortunately, it is so far impossible to cure autism. The international community has approved just one medication for mitigating its symptoms.
India established the Action for Autism (AFA) movement in the 1990s to provide support for children and adults with autism and their families. In 1994, AFA started publishing the Autism Network journal. By the late 1990s, India already had several autism organizations.
Another videoconference participant, Dr. Nidhi Singhal, director for research and training at the Action for Autism centre, noted that she and her colleagues had been working with patients aged between seven months and 50 years for the past 25 years. They provide clinical services, conduct research, train personnel and cooperate with the authorities in order to legally formalise the status of people with ASD, she said.
Arthur Khaustov, director of the Federal Resource Center for Organization of Comprehensive Support to Children with Autism Spectrum Disorders at Moscow State University of Psychology and Education, noted that his center was the main Russian state autism organization.
The centre aims to help expand systems for assisting autistic children in the regions. The center actively cooperates with 47 out of the 85 Russian regions and annually trains an estimated 4,200 specialists. “We offer open and closed education formats, including conferences, seminars and webinars,” he said and noted the growing demand for evaluation tools that make it possible to draft programs for children with special needs.
The elaboration of standard criteria for gauging the efficiency of support measures is a challenge issue facing the international academic community, he noted.
“Next year, there are plans to create a protocol with formal standards making it possible to see whether any specific treatment methods meet criteria being drafted by scientists,” the expert said and noted that the center’s employees seek international cooperation in this area.
Any contacts and mutual education are useful. “This will allow families in India to obtain assistance not only from the Federal Resource Center but from network organizations being established in that country,” Khaustov explained.
Preschoolers study for 12−24 months, said Maria Bereslavskaya, head of the Preschool/School Department at the Federal Resource Centre for Organisation of Comprehensive Support to Children with Autism Spectrum Disorders at Moscow State University of Psychology and Education. Each group has a speech therapist, a psychologist and a special education expert.
“We have sensory rooms and a media screen showing the school schedule. Some supports are eventually removed, thereby allowing children to adapt to a standard school environment more easily,” she noted.
The center trains specialists and parents of children with ASD (who have a higher education) under a two-year modular program called Psychological-Pedagogical Support for People with ASD, said Lyudmila Tishina, head of the Faculty of Special Education at the Department of Clinical and Special Psychology of Moscow State University of Psychology and Education.
“No two autists are alike, and this is a global trend,” she added. Quite often parents become their children’s best assistants, she noted.
Each autist is unique; therefore, specialists earning MA degrees must have a diverse education. They develop diagnostic methods and methodological recommendations in the field of alternative communications and behavioral problems (including bad food habits and destructive behavior) for various specialists.
“In 2014, Russia launched the first national MA program that has already trained 80 teachers, psychologists and special education experts who work in the education, healthcare and social security sectors,” she said in conclusion.
Special children must be heard, and this will make it possible to effectively help them; in turn, society will become more tolerant and better informed, to say the least, experts say. It is necessary to publish books by autists and to release films starring persons with disabilities who can be interpreted as having autism. It is also necessary to discuss the lives of people speaking another language and boasting alternative ways of thinking and parallel sensory perception.
People in Russia know the story of Indian writer and poet Tito Rajarshi Mukhopadhyay, who published his book Beyond the Silence: My Life, the World and Autism in 2000. Videoconference participants noted that articles and television shows involving this person have expanded the perception of an autist’s inner world.
The successful socialisation of autistic superstars and people from their inner circle helps to more actively assist people with ASD and raise public awareness of this acute issue.