One of the challenges that autistic children face is being accepted into society, and sometimes into their own families as well.
Because autism is a developmental disorder, some children who are affected by it are not aware of whether they are truly accepted by society or their families. The ways in which people with autism are treated by society may further influence how they behave.
The exact number of autistic children in Kosovo is still unknown. The NGO “Autizmi” (Autism), supposes that there are around 500 autistic children in the country. The lack of statistics is a result of families who feel reluctant to register these children at the respective institutions, because of the stigma surrounding the disorder.
Samire Shkodra, vice president of this organization, founded in 2011 in Prishtinë, says that one of the reasons why the number is unknown is because children with autism are often registered in the same category as children with special needs, causing difficulties in recording the exact number of autistic children.
Seven autistic children currently attend classes in the primary school “Xhemajl Mustafa.”
Njomza Dragusha, a psychologist at this school says that these children are taught with a special curriculum. This curriculum is compiled in the special school “Përparimi,” by the parents, the teachers, and the psychologists. The curriculum is not only used for this school, but for the others in the area as well.
However, Shpresa Shala, the principal of “Xhemajl Mustafa,” is still concerned about the lack of educational resources for these children.
“They have crises time after time, and we need a special classroom to manage them. They also need a teacher who is an expert in teaching children with autism, and who has the time to dedicate to them,” Shala says.
She also complains that there are parents who want to hide this truth about their children, and adds that they ask her not to tell anyone about it.
The problem with this is that she is obliged to present the number of the autistic children at her school to the Ministry of Education, Science, and Technology (MEST).
The most important thing, according to Shpresa Shala is that “these children are very welcomed into the classroom; the other pupils are respectful and offer them lots of love.”
Violeta Hyseni, a teacher at “Xhemajl Mustafa,” says that since she started working with an autistic child, she has noticed that he does not seem to like her. She remarks that he used to hide under his desk most of the time.
The teacher says that she has talked to the other pupils in the classroom and explained to them that he needs special treatment. Another decision that had a very positive impact was for him to sit with a different pupil each day.
“He gets to socialize more in this way,” Hyseni says.
Another general problem, as asserted by the psychologist Dragusha, is ensuring that a personal psychologist will work with these children.
“They also need an assistant or aide to work more with them during the lesson hours. All these expenses are paid for by the family. These expenses add up to huge amounts of money. We have cases where the big sister plays the role of the aide for her family members,” Dragusha says.
There are 13 psychologists who work with 25 autistic children in the NGO “Autizmi.”
Samire Shkodra, vice director of this center says that the lack of statistics has a very negative impact, since there would be more children who could benefit from these services.
She stresses that the families cause problems because they are afraid that their children may be labeled negatively.
There are seven psychologists who work at the NGO “Autizmi flet” (Autism Talks), which was founded two years ago.
There are 17 children who receive direct services at this organization, whereas many others attend classes with psychologists of this organization either in school or at home.
An hour per month with psychologists costs 100 euro. The autistic child needs averagely six hours per month.
Another very costly expense is the supplement therapy, which should be taken once a month. This therapy costs 3,ooo euro and helps to regulate the metabolism. One must buy the medicine in the European Union in order to provide this therapy.
All these expenses are paid for by the family.
The Ministry of Labor and Social Welfare (MLSW) offers 100 euro per month for all those who have permanent disabilities. Nevertheless, most of the autistic children are exempted from this minimal support because their disabilities are not always physical.
Shqipdona Ademaj
