«We were seen, heard and accepted»

Last September, about 2,000 children and their parents ran 1,400 metres to support children with disabilities. The charity Family Race was organised by the United Nations Children's Fund (UNICEF Belarus), MTS, Belagroprombank and Belarusian Athletics Federation as part of the Minsk Semi-Marathon. With the money raised, UNICEF bought assistive equipment for children with autism spectrum disorder (ASD) to the Children's Medical Rehabilitation Centre "Praleska". We want to tell you more about what this equipment is and why it is critical for children. 

There are many stereotypes about people with autism: smart, on the verge of genius, silent, calm, withdrawn, staring at one point, arranging objects in a row. But that's in the movies. But in life everything is different.

Slava is 6 years old, he is not calm, but hyperactive. If there are too many sounds, smells, bright lights, and voices around, Slava experiences sensory overload. The boy can react to this in different ways — from stupor to hysteria. Diana is 5, and she is not withdrawn, but very smiling. She prefers to communicate with adults: her peers do not always accept her into their games. Klim is 13, he is not silent, but very sociable. Klim came over to get acquainted with us himself, "I'm going to be a blogger. I'll start TikTok, I'll start Instagram. I'll be voicing cartoons. My favorite cartoon is 'Soul'." I admit: not all of Klim's words are clear. Some phrases were ‘translated’ by Klim's mum: many children with autism have serious problems with speech development.

If you know one person with autism, it is not necessarily true that you know everyone else. Some people are not very verbal and you have to work hard to get them to get used to you and start talking. Some, on the contrary, are very verbose. Slava, Diana, Klim, like other children with autism, help us to understand that not everyone sees the world and acts in it in the same way. Each person with autism is unique, each has their own strengths and weaknesses, dreams and talents.  

According to WHO, every 160th ‑child in the world is born with autism. In Belarus, the number of children with autism has increased 2.4 times over the past 5 years. Autism is not a disease, but a developmental disorder that persists in a person throughout their life. Autism cannot be cured with pills, but with some support, people with autism can live in society and fulfil their potential.  The earlier education and support programmes begin, the more effective they will be.

What the situation in Belarus is

In Belarus, specialised care for children with autism has recently been available at the Medical Rehabilitation Centre "Praleska". The Centre is a newcomer in this field. For 37 years it has been operating for children with respiratory, digestive and vision disorders. But since January 2024, as part of a pilot project, it has been accepting children with autism spectrum disorders. Every 17 days - a standard shift for the Centre - five new children with ASD arrive, accompanied by their parents. Here they undergo comprehensive rehabilitation: general health improvement (in fact, the Centre works as a children's health camp) and specialised classes with psychologists, speech therapists-defectologists and other specialists who have the expertise to work with autism. 

The new functionality of the Centre is a big step for Belarus in terms of supporting children with ASD. 10-15 years ago, it was difficult to diagnose children with autism. A child could easily get a stamp ‘mental retardation’ and go to a specialised school. If the old approaches to diagnosis and, consequently, to ‘treatment ’* are used, the whole life of a person with autism may not go as well as it could. The child will not go to a general school or an integrated class, will not gain socialisation skills and will not have a decent quality of life.

* means to maintain and improve the quality of life of people with autism spectrum disorder, for example by treating co-occurring disorders, ABA therapy, sensory integration and working with a speech and language therapist.

Now, in addition to progress in diagnosis, the Ministry of Health has defined a clear algorithm for providing medical care to paediatric patients with suspicion or signs of ASD. Besides, it has recognised the need to create special psychologically comfortable conditions of medical care for children with ASD in state health care organisations.

In order to assist people with ASD in a timely manner, a lot of resources are required. Not all parents have the financial capacity to go to private centres for rehabilitation. That is why it is so critical to establish systematic state assistance, and the emergence of such a Centre is a breakthrough.  

Therefore, UNICEF in Belarus supported the Centre and purchased a set of equipment that was lacking for comprehensive support of children with ASD - to organise sensory-integration therapy classes (sensory room “House of Owl”) and organised training for psychologists who will work with boys and girls in this room. 

Simply about the complex

‘’Sensor-integration therapy‘’, ‘’neuropsychology‘’, ‘’ABA-therapy‘’ sound solid and professional. But a person who is not immersed in the subject is not always clear what it is all about. And before we go into explanations, let's return for a moment to Klim and his favourite cartoon ‘Soul’, where there is a wonderful parable about a fish. 

A naive fish swam up to a wise fish and asked, "How do you find what is called the ocean?". "The ocean?", she repeated. "You're already in it, we live in it!" "That?"wondered the fish. "That's water! And I want to go to the ocean!" 

We are all ‘naive fish’ sometimes and forget how much we already have. Children with autism have to work hard every day to learn what we think of as basic skills: the ability to talk, to communicate, to understand their bodies and emotions.

Modern techniques for working with children with ASD help to ‘tweak’ the basic settings, opening up new opportunities for boys and girls to interact with the world.

Therefore, people who supported the charity Family Race did not just raise money for assistive technologies for children with disabilities, they gave children with ASD the opportunity to learn about themselves, the opportunity to hear others and the opportunity to speak.   

I can feel my body

"Initially, Margo had no understanding, no awareness of what an arm is, what a leg is," Daria, Margarita's mother says, who, along with Klim, Slava and Dasha, are currently undergoing rehabilitation at the Praleska Center. "Children with autism have a problem in that they get nervous, freak out, because they just don't feel physically. All the equipment in the sensory room, all the facilities help children to feel their physical selves. Here, for example, the ‘cocoon’ forms the feeling of one's own body in balance, helps to adapt to vestibular stimuli. All the equipment, of course, works only with the active participation of a psychologist."

It can be very difficult for children with ASD to climb a ladder, jump up or even just sit on a chair. They do not feel the body well and do not know how to control it. But a lot can be fixed.

The various ways of using the equipment in the sensory room promote the development of not only physical strength, but also body plasticity, dexterity, balance and co-ordination. The space of the ‘'House of Owl'’ creates various tasks for the brain, which the child solves by means of their motor activity. The complex of exercises is selected individually for each child according to the diagnosis: someone needs soothing and relaxing exercises; someone, due to hyperactivity, needs to choose a complex to relieve tension and form control over the body.

"We have been working with a neuropsychologist for two years now, including in similar rooms and spaces," Daria continues to share. " During this time, the child has changed tremendously. Now her motor skills are very well developed and she has an understanding of speech. Without such work, there can't even be a speech launch."  

I can speak

There are families where they celebrate children's birthdays, order colourful cakes for their namesakes and New Year. There are families who celebrate every new word spoken, and every sentence painstakingly constructed from those words.  

"Diana came here to the Center and started talking in sentences,"  Diana's mother says. "Now she says, "Mom, give me your hand." This is just tremendous progress. When a child with autism starts to say even syllables, it's a breakthrough, but when words and sentences appear, you just can't believe it, knock on wood. It's not that I didn't believe in Diana's speech anymore, I was just tired of being frustrated when there wasn't much progress."

In the process of the sessions at the “House of Owl”, cognitive processes and, as a consequence, speech, communication skills, the ability to learn to write, read, count, etc. are also improved.  

I can hear you

" We have come a long way," Klim's mother shares. " There have been a lot of classes, but this is our first rehabilitation - such a full-scale, round-the-clock programme. And I am delighted with the classes, with the attitude of the staff. We've been in similar rooms, and it's a great idea to include it in the course of rehabilitation. Because kids like Klim really have a sensory system that suffers. Without these activities, other work can go by the wayside. We need a full complex, where sensory integration is also added. Only work in different areas can give significant results: when the child begins to understand, when he is addressed, when he begins to speak." 

Equal treatment of all children, including children with disabilities, is an important step towards an inclusive society, where everyone feels valued, where everyone can realise their rights and opportunities on an equal basis with everyone else. We are glad that many organisations and people are walking side by side on this road. We are glad that thanks to the support of the Family Race participants, parents of children with autism were able to say ‘We were seen, heard and accepted’. In 2024 there will also be a charity race, so you can take part and support the children.