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Who are children with autism and how we can help them: mothers of special children refute Top-5 myths

Kyiv, March 31, 2017.

April 2 is World Autism Awareness Day. Mothers of special children took part in a press briefing held at Ukraine Crisis Media Center. They refuted 5 common myths about autism and reminded that these people deserve respect and understanding, and have the same rights as all other members of society.

The first myth: autism is a disease. At various stages of its research autism was considered first a disease, then a mental disorder. Now the world is inclined to believe that this is a special state, said Evhenia Panichevska, head of Foundation “Association of parents of children with autism”, mother of a boy with autism. Its three main signs are specific communication, social interaction and behavior. “It is up to doctors to decide whether autism is a disease or not. The main thing is to diagnose the condition of a person and determine what help they need,” she said.

The second myth: autism is curable. “It is an innate feature of a person and it is impossible to treat autism itself, at least for now. When mothers say that they provide medical treatment for their child, they usually mean correction for better adaptation to society,” stressed Viola Burda, representative of the Community of special families “We are together!”, journalist, mother of a young boy with autism. “There are people who use other people’s misfortune and promise the moon, but you will not live up to this. Correction is a very long process. There are success stories when parents can declare that they have overcome autism, but still autistic features remain for life,” added Olha Shyshlova, psychologist, art therapist, teacher of inclusive programs at the PinchukArtCentre, co-founder of the organization “Good people”, host of workshop in corrective camps of the “Space of love”, mother of autistic child. Autistic problems can accompany diseases of the nervous system as secondary symptoms. In this case, doctors can treat basic disorders, but not autism.

The third myth: a child with autism needs special education system. Typically, such a special system in the realities of post-Soviet countries offers no other option than isolation from a family and society in a mental hospital. It is very difficult to create a universal special system for people with autism because signs of autism are very individual, so behavior and mental abilities are also different. However, children with autism cannot attend an inclusive group in normal school either, except when after a long work with a special educator they are able to work with others in class, with the help of an adult assistant.

The most topical issue is how to arrange the adult lives of people with autism when they lose their parents. In Ukraine, if they are not in other relatives’ custody, the only possible solution so far is a mental hospital. After years of living in a warm atmosphere in the family this will be a shock to a person with autism and may adversely affect his condition. There is successful practice in the West, the so-called “residence support”. About ten autistic persons live in a small village or house, and are supported by social workers in learning to organize their own lives, communicate with each other, go to the parks, movies, swimming pools and so on. In Ukraine, similar practices are used at special centers, where several times a week classes are conducted. However, it is necessary to raise funds and involve very professional experts to create a residence support network.

The fourth myth is that autistic people are geniuses, have psychic powers, etc. Undoubtedly, there are many gifted persons among autistic people, and they are lucky if there are also those who can spot and unlock their talents.

The fifth myth is that autistic children do not want to communicate and prefer to be alone; they usually do not hear or understand when people say something about them. Instead, communication is very important to them. Because it is in communication that they feel adequate. “It’s a little different level of communication. The main thing is to observe how a child (and then an adult) intends to communicate with you because the ways of communication can differ,” noted Viola Burda. Some children bring a book and ask you to read it, others like to learn foreign words, etc.

“What can people do to help people with autism is to avoid cashing in on them, creating myths about them, discriminating their parents. It is important for us that our children become not so much productive members of society as independent people, insofar as possible,” concluded Evhenia Panichevska. She added that the Association is in constant contact with the Ministry of Education and Ministry of Healthcare. “Now the priority issue for us is the promotion of such a service as a child’s assistant either in an inclusive class or in a special system. Some people need a wheelchair, we need assistance,” noted Evhenia Panichevska.

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