The III International Conference «Autism: Challenges and Solutions» took place in Moscow. Co-chairman of the organizing committee, head of the Institute for the Study of Autism Steve Edelson answered questions from Psychologies.
Psychologies: You have been studying autism for over 30 years. Have there been real breakthroughs over the years?
Stephen Edelson: A scientific breakthrough is knowledge that can change all ideas in an instant, and there were not many of them. I would name two: the understanding that autism is biological and not the fault of the mother, and the understanding of the effectiveness of such a method as Applied Behavior Analysis, ABA (Applied Behavior Analysis), which can help so many people with autism, this is confirmed by hundreds of studies. However, we still don’t know what causes autism. And yet our vision is expanding. We know that there are abnormalities in certain areas of the brain in autism, although we don’t yet know why. We know that many people with autism suffer from various comorbidities, including gastrointestinal disorders, immune disorders, metabolic problems, asthma, and allergies.
We often hear about the epidemic of autism in the world. Is the number of people with this diagnosis really growing? Or just learned to better identify it?
S. E.: We’ve gotten better at diagnosing autism, but the number of people with autism is actually on the rise. Although we judge the level of autism mainly according to the data of the USA and Great Britain. Other countries also report an increase in the number of people with autism, but they do not have statistics, because such studies are very expensive.
What is the reason for this growth? What are the hypotheses for this?
More and more researchers agree that this is the result of the interaction of genetic factors and the environment.
In addition to ABA, what methods of treatment and rehabilitation are considered promising today?
There is convincing data proving the effectiveness of the PECS method (Pictures Exchange Communication System — Alternative Communication System using cards. — Approx. Ed.). Regarding nutrition, it is known that the well-being of some children improves significantly with the introduction of a gluten-free, casein-free diet and some others. There are many high quality studies (about 12) on vitamin B6. We also know that regular speech therapy sessions can help.
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Is it possible to fully recover people with such a diagnosis and in what cases?
We believe that 10 to 20% of children may recover, but some symptoms will remain, such as minor problems with speech and communication. When we say that a person has “recovered”, we mean that others do not notice signs of disability in him, a person can get married and have children, live a normal life. That being said, we still don’t think he’s «neurotypical», just that he’s in very good shape.
What would you say to parents who have just found out that their child has this diagnosis? To what extent will the child’s progress depend on themselves?
S. E.: We generally recommend starting ABA classes as soon as possible. And also examine the child for somatic diseases, such as diseases of the gastrointestinal tract and the immune system. We encourage them to try safe treatments for themselves, such as putting their child on a gluten-free, casein-free diet, and see if there are behavioral changes. We also say that you need to eat right, eat healthy organic food, avoid pesticides and any substances that can be toxic.
“My main advice: try to keep the child’s mental activity active, talk to him more often, complete tasks together.”
Many parents trust the Internet, they communicate there with other parents of such children. But at the same time, it must be borne in mind that there is a lot of false information on the Internet. It is good if there is a support group in your area where parents can meet, exchange information about pediatricians and dentists who know the problem of autism, get advice on where to better educate the child and spend leisure time. I believe 80% of success depends on parents. My main advice: try to keep the child’s mental activity active, talk to him more often, complete tasks together. It is bad if the child plays computer games for hours, watches cartoons or TV. The child needs to be stimulated, because the more stimulation he receives, the better his brain develops.
There are many myths around autism. Which of them are especially dangerous?
S. E.: There is one old myth that, unfortunately, exists to this day. It is that the parents are to blame for the child’s autism. Because of this myth, parents may be referred to counseling to learn how to better fulfill their parenting responsibilities. In France and other European countries it is still common. In addition, there are certain treatments that can be harmful. Such as the «miracle» mineral supplement (MMS — Miracle Mineral Solution), which is a bleach. She appeared 2-3 years ago. Taking this drug can lead to diseases of the gastrointestinal tract and cause serious harm to health. And yet many people use it. So be vigilant! If someone tells you: “Here is a remedy that will cure your child,” you should not trust this person. Perhaps this is another «miracle» like MMS.
Why did your institute decide to participate in the organization of the Moscow conference?
The family of the founder of our institute, Bernard Rimland (1), was originally from Russia. My mother was born in Odessa. Five years ago, I brought together several scientists who were born and educated in Russia and are now working in the United States on research projects in the field of autism. We discussed for two days how we can help Russia in this area. About two years later, together with the Center for Autism Problems, we co-organized the first conference in Moscow. Some believe that people with autism cannot be helped. But actually we can do it. If a person is treated, his condition will improve. The more stimulation and therapy people with autism receive, the better their condition. It is important to understand this: autism is treatable!
1. Bernard Rimland, American psychologist, professor, founder and first director of the Institute for the Study of Autism, founder of the Autism Society of America. In 1964, he published the book «Infantile Autism: The Syndrome and Its Implication for a Neural Theory of Behavior», where he refuted the prevailing view in science of autism as a disease caused by lack of maternal attention.