An eighteenth birthday should mean a celebration, a driver's license, going to your first job or university, a sense of new freedom.
For young people with autism it means - isolation. The moment they come of age, they are left without personal assistants, so families are left alone in the struggle.
April is Autism Awareness Month. There is talk about supporting children with autism, but less often about what happens when they grow up. For many families in Serbia, this is when Golgotha begins.
From school to isolation
"My child misses feeling useful, that his life has meaning, that he has structure," Nikolina Crnogorac from Belgrade tells us. Her son Nikola (23) has autism. He graduated from high school three years ago.
"That's when regression begins. Isolation. The closed circle in which he and my husband live. One of us had to quit our job when Nikola formally left the education system. We decided that it would be the husband. Now the two are condemned to each other," says the Montenegrin.
Photo: Archive of Nikolina CrnogoracNikolina Montenegrin with her son Nikola
During school, children with autism have the right to a personal companion. He is the basic link, which enabled children to be included in the education system at all.
The companion sits next to the child in the pew. Brings and takes away from school, looks after, helps with maintaining personal hygiene and dressing, eating, playing, solving tasks. It helps a child with autism to understand the world around him as much as he can.
In short, there is no inclusion without a companion. However, from the age of majority, no companion or assistant is provided.
"My son is an adult, he wants his generation around him. However, he is condemned to my husband and me. I am overcome with despair when I see how my child lives. We simply do not have any solution," says Nikolina Crnogorac for our newsletter Medjuvreme.
Bizarre rule
Serbia knows the institute of "personal assistant" for adults with disabilities, but the regulations have a bizarre clause about it. Namely, "users of the service" must "have the ability to make independent decisions".
People with intellectual disabilities this ability is not recognized and thus remain without this social protection service.
A personal assistant would help them with daily activities, from finding their way around the house and performing personal hygiene, to going to work or other events. Such support would allow them greater independence and the opportunity to spend time outside the family environment, to go out, socialize and develop their own interests.
Tatjana Poljak Ristanović is the founder of the association for support of children and persons with disabilities "Realno" from Novi Sad and the mother of a high school student with autism. She explains that in Serbia, people with autism are treated as objects of protection, not as beneficiaries of rights.
"Instead of support in decision-making, here, people with autism protect themselves from themselves by taking away their right to decide. And that's discrimination," she tells Medjuvreme.
"Every human being makes a lot of decisions every day. Every day, when we go to the store, my son buys potatoes and two bags of ketchup. That means he has made a decision to eat potato chips with ketchup for lunch. On Saturdays, he asks to go to a music workshop and after an hour he usually wants to go home. He refuses to do his homework quite often and quite firmly. Of course, the more support we have when we make decisions, the better those decisions are for us. People with autism are denied even the right to a mistake, while everyone else has the right to learn through wrong decisions," explains Tatjana.
Photo: Archive of Tatjana Poljak RistanovićTatjana Poljak Ristanović with her son
Alone and bored
Without the responsibilities and routines they had when they went to school, young people with autism usually have a sporadic social life and too few ways to fill their day. They become isolated. In the years when independence is gained, they become more and more attached to their parents.
Poljak Ristanović says that some cities and municipalities have "day care centers" for people with developmental disabilities, but that there they are expected to fit into the existing mold.
"Support for people with disabilities should be based on personal needs and controlled by the user. The question arises as to what was the point of inclusive education, if children will end up in day care centers and similar institutions," says Poljak Ristanović.
The "parent-caregiver" law does not make any fundamental changes
The draft was finalized in March. "parent-caregiver" law, which should provide more support to families caring for seriously ill children and children with developmental disabilities.
Parents who are also caregivers of their children will receive compensation of 65.000 dinars per month and paid contributions. It will no doubt make life easier for many.
Photo: FoNet/Milena VlajicThe parent-caregiver law does not solve the key problem of young people with autism
But there are also many criticisms. One of the main ones is that only unemployed parents can get the status of parent-carer, while those who work - and often miss work or take sick leave - would be left without support.
Also, the law does not solve the key problem of young people with autism. They do not gain any independence, but are even more strongly attached to the house and usually to their parents.
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