Photo: Private archive"Everything is the same as when my son was three years old, and now, when he is 20 years old, the story is identical. Nothing has changed about society's attitude towards him"
Today is World Autism Day, to raise awareness of this neurodegenerative disorder. Signs of autism usually appear in early childhood and if detected in time, it is possible to positively influence the child's development with therapies and a good approach.
"When we found out that our child has autism, we did two things. First we adapted our life to that new situation. We realized that it is a neurodevelopmental disorder that is lifelong and that there is no cure for it. Then we met and became close with other parents in a similar situation. That's why we decided to found an association, to fight together because as individuals we can't do anything", says Dario Rossi, president of the Association "Autism - Right to Life".
The Law on Health Documentation and Records in the field of health provides for the establishment of a Register of Children with Developmental Disabilities. Dario Rossi says that despite this obligation, the Register does not exist.
"It is one of the fundamental problems, because it is actually necessary to start from it. No health, educational, or social policy can be planned for this group of people, if we don't even know how many there are," says Dario Rossi.
He further states that in February 2020, they, as an Association, sent a letter to the Batut Institute asking how many children there are with developmental disabilities.
"They told us that there are 57 children with developmental disabilities in Serbia. I met 2000 children with autism, and I didn't move around much," says Rossi and points out that they asked Batut the same question again in February of last year and that this time their answer was - 164.
In the Law on Health Documentation and Records in the Field of Health, Article 56, it is written that a fine in the amount of 50.000 to 2.000.000 dinars will be fined for a misdemeanor if the public health institute established for the territory of the Republic of Serbia does not keep a register of persons suffering from diseases from of greater public health importance. As far as is known, not a single sentence has been imposed so far.
In January of last year, the construction of the Center for Early Development of Children and Inclusion began in Belgrade on Bežanijska Kosa. As announced at the time, it was established to provide diagnostic and therapeutic support to children and their parents and guardians, as well as specialized training for all those involved in the early development of children, and it is expected to receive the first users at the end of next year.
"Instead of building three centers for autism in Nis, Novi Sad and Belgrade, they decided to build one, for all children with developmental disabilities," says Rossi and adds that there are thousands of children with autism in rural areas, for which centers should be built in three big cities. "There are four such centers in Croatia. They made it possible for people to gather in one place, not to be scattered around the hospitals."
According to him, our health care system is very late in the development of diagnostics and emphasizes that "the world adheres to the fact that the first three years of life are the most important, when something can still be achieved with an autistic child, so that through persistent work the child can be equally included in life and became functional to a certain extent.”
"If you manage to make an appointment with a doctor who is an expert in this disease, he will look at the child, advise you, and you can visit him regularly for a check-up in about six months. They may refer you to a speech therapist, with whom you can schedule a one-hour appointment once every 15 or 10 days. And it is considered that children must be worked with on a daily basis, both speech therapy and other exercises that can be helpful", says Dario Rossi.
He states that what could bring change is a parental rebellion that would demand some systemic changes. He adds that it is also necessary for society to change, and that solidarity is almost non-existent.
"Everything is the same as when my son was three years old, and now, when he is 20 years old, the story is identical. Nothing has changed about society's attitude towards him."
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