We all love to go to the theater, cinema, museum, someone is attracted by sports. Why should people with autism spectrum disorders (ASD) be deprived of such important joys of life? They thought in the Nizhny Novgorod regional public organization for supporting children and youth "Veras" and decided to create "Friendly Nizhny".
I learned more about the AiF-NN project from its coordinator Marina Kondratyeva.
Learn to communicate
Zlata Medushevskaya, AiF-NN: Marina, there is a lot of talk about people with autism spectrum disorders today. Do you have more diagnoses like this?
Marina Kondratyeva: There have always been children with autism. Diagnoses were made by others - for example, schizophrenia or mental retardation in different stages. This was not true, but there were very few specialists who could diagnose autism.
Now there are more psychiatrists who are familiar with the diagnosis of "autism" and can accurately establish it using modern diagnostic methods.
- What should parents pay attention to in the child's behavior in order to help him in time?
- The first bells should be that the child does not engage in games with parents or people from his close environment, does not focus his gaze on them. It is clear that when it comes to unfamiliar people, the baby behaves this way because he may be afraid. But the child has a special relationship with close ones, and you can understand that something is wrong.
Pay attention to the baby's games. For example, be wary if his favorite pastime is to organize things according to some special feature. Of course, there is no need to engage in self-diagnostics, go to specialists if in doubt. Perhaps not just one. Doctors who are not familiar with the situation sometimes say to mothers and fathers: "Wait, your child will grow out, everything can be fine."
- What is the threat of such a delay to a child with autism?
- There is definitely no need to wait. Early help is very important. So far, unfortunately, there are no medical ways to "treat" autism, but there are quite effective programs of assistance and adaptation for children with ASD. Research confirms that the earlier a program is started, the more effective it is. It is important that the family is involved in these programs. The key to success lies in the fact that the programs are aimed at the development of social interaction and communication. And, of course, they work in their natural environment.
- What problems do parents face after a diagnosis?
- It can be the rejection of a child in society, and problems with educational institutions, with the self-determination of an adult in society in the future.
Many people, meeting in public places a family with a child with disabilities, can make various comments or give various kinds of advice to parents. Some, seeing a crying or screaming child, consider him capricious and ill-mannered. But in fact, this may be due to the peculiarities of the perception of sensory information or with something else. And the parents either internally "shrink", or give out a response aggression.
But I am glad that gradually the attitude towards children with autism in society is changing. People are learning more and more about this developmental feature, including through public and charitable organizations.
- In Nizhny Novgorod it is a public organization "Veras".
- The Naked Heart Family Support Center operates on the basis of Veras. There is an early intervention service for children with autism spectrum disorders. Specialists prepare kids for admission to kindergartens and schools, educate parents so that they can develop children at home. There is a unit for working with adolescents and adults with ASD.
Let's go to the museum
- As far as I know, for adolescents and adults, and launched the "Friendly Nizhny" project.
- All people, except for work and school, should have leisure. In our center, we call joint exits to public places social exits.
We started organizing the first social outings three years ago, they were irregular. Subsequently, friendly relations emerged with some museums in Nizhny Novgorod, for example, with the State Center for Contemporary Art "Arsenal". Our specialists taught the museum staff to tell the children about exhibitions and paintings in order to convey the meaning. Then the guys were already prepared for what they were to see. And other cultural and leisure organizations did not mind accepting our group, but there is no one there to work with our guys - people simply do not know how. And so we came up with the "Friendly Nizhny" project, which was supported by the Absolute-Help charity foundation. The goal of the project is to create a friendly cultural and leisure environment for people with autism in Nizhny Novgorod, to train specialists working with special children in cultural institutions.
- What difficulties did you face while working on the project?
- Not everyone is ready to accept people with ASD, especially without the accompaniment of specialists. Of course, there were also institutions where we were told that they had a large influx of visitors and they had no time to deal with special visitors. But it means that efforts must be made to convince people to change Soviet stereotypes.
It was once thought: if a person has a disability, then he should sit within four walls … It is no coincidence that, within the framework of the project, we conduct trainings that help to understand people with disabilities, to understand the peculiarities of working with people with ASD. It turns out that there are many stereotypes and ignorance of the topic. But people want and are ready to change.
On the other hand, there were a lot of people who wanted to study and receive our children in their cultural and leisure institutions. This made us happy, but it is impossible to cover everything at once …
So far we have decided to focus on museums and libraries. The plans are to create a “Friendly Bottom” map with the designation of places where people with autism spectrum disorders and their environment are welcome.
Marina Kondratyeva. She was born in the town of Gorodets, Nizhny Novgorod region. In 2003 she graduated from the Faculty of Philology of the N. N. Lobachevsky. Fundraising Manager of the Nizhny Novgorod Regional Public Organization for Support of Children and Youth "Veras". Specialist of the Naked Heart Family Support Center. Coordinator of the Benevolent Nizhny project.