Persons with autism in Macedonia live on the margins of society. There is no exact number since there is no official registry, despite being in the process of making for several years. There are no sufficient defectologists in kindergartens and schools, and there should be by Law. None of the persons with autism is employed, and they are capable do perform certain tasks on their own.
Dr. Vladimir Trajkovski is President of the Macedonian Scientific Association for Autism (MSSA), professor at the Faculty of Philosophy in the sphere of human genetics, medical elements of invalidity, physiology with functional anatomy, and the autistic specter of the disorder.
In the interview for Telegraf.mk he spoke of the rights and issues of persons with autism.
April 2 has been marked as Autism Day since 2011.
T: Why is the number of autistic children drastically growing? Why do we not know how many autistic children there are exactly in Macedonia?
-One of the reasons why the number of these children is growing, apart from the real increase, is the increased public consciousness of the parents, the doctors, defectologist, to recognize autism. Something 15-20 years ago we have not considered to be autism, and was in fact autism, was put under other diagnosis. That is why we have a rapid growth, and in the USA autism has reached epidemic scale. We, as a MSSA, have 160 registered persons, on the ages between 3 and 35. That is an underestimated number. According to the world statistics, 12,240 in 2 million persons have autism.
T: Is there progress in diagnostics and treatment of the autistic persons, and their inclusion the society in the past several years?
-We have two centers opened in Skopje in Stip, and another is to open in Ohrid. What we are fighting for, is to open National Center for Early Detection, Diagnostics and Treatment, which is announced for 2017. The issues is, who will work there, and whether the staff will previously be educated in USA or Western Europe, because our students who study defectology have a lot of theoretic knowledge but they need practical education as well. In terms of the health measures, there is no significant shift. We established four sensor rooms in south Macedonia, they are somewhat functional, but the local self-government needs to realize that a minimum team needs to be paid to work there.
T: Where in society are the greatest obstacles for autistic persons? Is it the fact that they are not diagnosed on time, of that there is no educated staff in the kindergartens and schools to work with them, or the fact they are not included in society, or none of them is employed?
-The biggest obstacle is the insensitivity of authorities for the problem and the bad mentality. These children are avoided and stigmatized, as well in the lack of education. Autism is not a contagious disease, and persons with autism can contribute for themselves and society. For some repetitive tasks they are even more capable that the neurotypical population. For example, they can surpass the daily quota at a factory line. Those with above average intelligence can graduate from a faculty. Persons with autism have a problem communicating, but if you leave them on a computer they will finish the job just like anyone else. They cannot be actors, or singers, but they can easily play the piano. The situation with their engagement is defeating – 0 percent of them are employed. They can graduate high school, and there are such here. But I am unaware of a person graduating from university in this country. Another problem are the adults – they are lost in the system. No one is taking care of them. Their parents ask themselves what to do after their death, and no one can answer that. Some of the most difficult cases are in Demir Kapija, some have been registered under other diagnosis, such as speech impediment, intellectual impediment, and even schizophrenia, despite the fact scientist have established the difference between autism and schizophrenia.
T: What would you say to the parents of autistic children, and others? How do we deal with autism?
-The parents, no matter their profession, need to become students of autism. The need to read science reports, relevant sources, to be more united, to listen to the doctors’ advice, to fight for their rights before the institutions. Regarding the others, there are many negative examples. A few years ago, parents from Centar municipality, both highly educated, came to my office asking me to help them withdraw their autistic child out of school. I told them that for me, that equals crime, I would rather tear my diploma. Society must accept these children. It is true they can be aggressive at times, but they will not do any harm. Only by acceptance, tolerance and inclusion can these children be integrated in society.