Author: Bejli Çaušaj
"I received a golden diploma from my son, from an academy that has no building, no lecturers; the building and the best teacher is my son."
These are the words of Eglantina Bajrami, mother of a son with autism and director of National club of parents of children with autism.
Her son is pursuing higher education! Although it has not been easy, and with the pandemic situation the circumstances became even more difficult, Eglantina feels proud of her work as a parent. She has noticed that her son or other children with autism were made aware to stay at home, even when they had permission from E-Albania, to avoid the risk of spreading the virus. "I have called it a blessing to be the mother of a child on the spectrum. A blessing, because it has taught me many things", she says.
But not everything is easy.
In the case of one parent, who wishes to remain anonymous, the situation was extremely difficult. Her son is unable to communicate due to autism and cannot follow the learning process through the platform online.
"For years, the boy has not been taken care of by any custodian at school, as he has shown signs of "aggression" and out of fear I have often been forced not to send him."
Financial problems have prevented her child from being treated in private centers. A teacher at the primary school, "Hasan Bitincka", says that she has been assigned to work with many autistic children for years. The biggest problem, according to her, is the lack of a real, educational, national plan for the education of autistic children.
Caretaker teachers are forced to follow a teaching model based on old systems, borrowed from abroad or even from parents' suggestions. Such cases have been brought to the attention of national institutions, but the reaction has been lukewarm.
Ogerta Manastirliu, the Minister of Health, in a 2018 statement said that there will be more engagement and more attention will be paid to people with the autism spectrum.
"On this day, which invites us all to pay more attention to children with autism spectrum disorders, I am here to announce the complete rehabilitation of the National Development Center, which treats about 330 children with autism a year, of which 150 are new cases, treated in 2017. We will guarantee conditions with high standards for children with autism spectrum disorders and for children with other abilities", Manastirliu said.
Autism is a problem that has never received the attention it deserves for years, a problem that deepened with the onset of the pandemic COVID-19. The lukewarm numbers, the lack of specialized staff, the disinterest of the authorities over the years, the lack of awareness, as well as the mentality of the parents has left this spectrum in the shadows from society. All the suffering falls on the affected children. The problems with autistic children became more acute with the pandemic.
For the year 2021, there are 4961 children affected by autism in Tirana, where 1771 are declared students, this information received from the Ministry of Education, the only institution with such statistics.
But how does Albania stand next to European countries regarding the treatment of this syndrome?
In conversations with Albanian specialists abroad about this problem, a completely different panorama appears. In these countries, both the private sector and the government cooperate through public funds, the funds of NGOand parents' payments. For these funds, each institution has commissions, which deal with the management of the structure. Together with the director, they decide how they will be used based on the requirements or lack of structure or staff. For child therapies, which include many syndromes, not just autism, each of the centers uses therapists who are certified. Many therapist centers have been set up, while in Albania they hardly exist.
The ways of working are adapted to the child based on his level. The course is supervised by professionals.
In the case of the pandemic, what happened was the total closure, however social assistance was not missing. Equipment, masks, disinfectants, thermometers or even private rehabilitation inside the house have been the aids that the Italian government has given to families with children with disabilities during the pandemic. In Israel, parents received funds from the state, that is, social wages, during this period; while in Albania the problems have been permanent, even before the pandemic, such as the lack of professionals, the hiring of an untrained psychologist for autistic children, the disinterest of the authorities and the mentality of the parents.
Missing psychotherapists
According to the standards, hospitalization through several tests requires at least one week to determine the child's condition, while in Albania this is an accelerated process.
In Western countries, the staff of therapists is trained to deal with economic crises, earthquakes, conflicts or even pandemics, while in our country many essential areas are missing in the training of psychologists. The treatment, which is carried out in Albania, is generalized.
In public schools, a teacher-psychologist is assigned to educate up to 3 autistic children, according to the standard, but in many cases they are assigned even more, since there is no staff or some of the children are not declared as such.
In Tirana, multidisciplinary centers work with two groups, the elderly and children with disabilities. These centers serve children until they reach the biological age of 14 years, which creates a problem, as it does not match the motor age. Many children remain exposed after this age because they have not reached motor maturity and are unable to absorb academically. Many parents and clubs have addressed requests to the Ministry of Education for their children, to have the opportunity to be educated in vocational schools and find themselves in various trades. The Services of these multidisciplinary, public centers have reflected shortcomings, forcing many parents to turn to private centers, which have a very high cost for a country like Albania, 1500-2500 new lek/hour, while the affected children from autism syndrome require a minimum of 3 hours of treatment per day through motor therapy, developmental therapy and speech therapy. Also, it is necessary to develop play therapy, such as sports, to feed their brain with oxygen. Another shortcoming is the protection of the teeth, without proper maintenance or coverage.
The year 2020 was one Blackout total, after the lesson online it didn't work. These children found it impossible to adapt, since it is essential for them to have direct contact with the teacher or psychologist in charge and not in a virtual way, which remained only in the communication phase rather than in the teaching phase. During the quarantine there was a delayed permission for children with autism to go out, as it was necessary for them to go outside for at least two hours a day. With the lifting of the quarantine, there were demands to be physically at school alternately. After September, the required permission was granted. Parental groups have constantly asked for cooperation for a trinomial parent-government-service centers during this difficult period.
5 multidisciplinary centers have been established in the capital over the years. From October 2018, with a decision of the Council of Ministers, these centers passed to the municipality, but there is still no special institution.
In Laprak, work is underway to establish a center dedicated only to autistic children, but due to the pandemic, the project has been postponed.
Organization Save the Children has contributed to the establishment of dedicated centers in other cities, giving an example to Tirana. Awareness is growing, but this is not enough, because inter-institutional action is required.
A worrying phenomenon is the non-declaration of children with autism, due to mentality or even fear, which has made many parents choose to educate their children at home and not be treated; disturbing problem, because it has forced these families to put aside rehabilitation programs after the quarantine. On the other hand, awareness campaigns or government projects have been few. In the subject of Civic Education there are only 5 lines dedicated to the autism spectrum and the behavior or treatment in society of individuals with disabilities, with generalized and superficial information.
Autism needs more attention.
Eglantina Bajrami, who today is proud of her son's achievements at the university, has a message for everyone: "Just as we have learned to live with religions, we must also live with disabled people."
*The author thanks Mrs. Eglantina Bajrami for the interview and the abundant information provided for the realization of this article.
