Children with autism between Covid 19 and the indifference pandemic
“I received a gold diploma from my son, from an academy that has no building, no lecturers, but the building and the best lecturer is my son.”
These are the words of Eglantina Bajrami, mother of a son with autism and director of the 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 noticed that her son or in cases of children with autism, had an awareness 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.within the spectrum. It’s a blessing because it has taught me so much,” she said.
But not everything is easy.
In the case of a parent who wishes to remain anonymous, the situation has been extremely difficult. Her son who finds it impossible to communicate due to his autism, for him it is impossible to follow the learning process through the online platform.
“For years my son has not been seen after by any caretaker at school because he has shown signs of aggression and out of fear, I have often been forced not to send him to school “.
Financial problems have prevented her child from being treated in private centers. A teacher at Hasan Bitincka Primary School says she has been assigned to work with many autistic children for years. According to her, the biggest problem is the lack of a proper national curriculum for the education of autistic children.
Guardian teachers are obliged 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 vague. Ogerta Manastirliu, Minister of Health in a statement of 2018, said that there will be more commitment and more attention will be given to people with autism spectrum.
“On this day that invites us all for more attention for children with autism spectrum disorders, I am here to announce the full rehabilitation of the National Welfare Center, which treats about 330 children with autism per year, of which 150 new cases were treated in 2017. We will guarantee conditions with a high standard for children with autism spectrum disorders and children with different abilities “, said Manastirliu.
Autism is a problem that has never received the attention it deserves for years.
This problem deepened with the onset of the global COVID-19 pandemic. Low numbers, lack of specialized staff, lack of interest of the authorities over the years, lack of awareness and the mentality of affected parents has left this spectrum in the shadows of society. All suffering falls to the detriment of affected children. Problems with autistic children became more acute with pandemics.
For the year 2021, there are 4961 children affected by autism in Tirana, where 1771 are declared students, received from the Ministry of Education, the only institution with such a statistic.
But how does Albania stand alongside European countries regarding the treatment of this syndrome?
In discussions with Albanian specialists abroad about this problem, a completely different picture emerges. In these states both the private and the government cooperate through public funds, private funds and parental payments. For these funds, each institution has committees which deal with the management of the structure. Together with the director they decide how they are used based on the requirements or lack of structure or staff. For therapies for atypical children, which involve many syndromes, not just autism, each of the centers uses therapies that are certified. Many therapist centers have been set up, almost non-existent in Albania. The ways of working are adapted to the child based on the level he has. The performance is supervised by professionals.
In the case of the pandemic what happened at this time was total closure. However, social assistance has not been lacking. Equipment, masks, disinfectants, thermometers or even private rehabilitation inside the home have been one of the aids provided by the Italian government to families with children with disabilities during the pandemic. In Israel, parents have received state funding, ie social wages during this period.
While in Albania, the problems have been permanent even before the pandemic. Lack of professionals, hiring untrained psychologists for atypical children, lack of interest of the authorities and the mentality of the parents.
According to the standards, hospitalization through some tests requires a minimum of one week to determine the condition of the child, while in Albania this is an accelerated process. In western countries, therapist staff is trained to deal with economic crises, earthquakes, conflicts, or even pandemics. Meanwhile in our country many essential areas in the training of psychologists are missing. The treatment performed in Albania is generalized.
In public schools, a teacher-psychologist is expected to educate up to 3 autistic children according to the standards set by the Ministry, but in many cases they have even more children under their care, as there is no staff or some children are not declared as such.
In Tirana, multidisciplinary centers operate with two groups, the elderly and children with disabilities. These centers serve children until they reach the biological age of 14 years. This is a problem because it does not match the motor age. Many children remain exposed after this age because they have not reached maturity by motor age and are unable to absorb academically. Many parents and clubs have filed requests with the Ministry of Education for their children to be educated in vocational schools and find themselves in various crafts. The services of these public multidisciplinary centers have reflected many shortcomings, forcing many parents to turn to private centers. But private centers have a very high cost for a country like Albania, 1500-2500 new lek per hour, while children affected by autism syndrome require a minimum of 3 hours of treatment per day through motor therapy, developmental therapy and speech therapy minimally. It is also necessary to develop play therapy like sports to feed their brains with oxygen. Another shortcoming remains the protection of the teeth, without proper maintenance or coverage.
2020 was a total “blackout” as online learning did not work. These children found it impossible to adapt as it is essential for them to have direct contact with the teacher or psychologist in charge and not virtually, which remained only one phase of communication more than instructional.
During the quarantine, there was a delayed leave for children with autism to leave, as it was necessary for them to go outdoors for at least two hours a day. With the quarantine coming to an end, demands were raised to be physically in school alternately. After September, the required permission was granted. Parent groups have consistently sought cooperation for a trinity of parent-government-service centers during this difficult period.
5 multidisciplinary centers have been set up in the capital over the years. From October 2018, with a Decision of the Council of Ministers, these centers were transferred to the municipality. But there is still no special institution. In Lapraka, work is underway to set up a center dedicated only to autistic children, but with the pandemic situation, the project has been postponed. Save the Children has contributed to the establishment of dedicated centers in other cities, setting an example for Tirana. Awareness is growing, but this is not enough, because inter-institutional action is required.
A disturbing phenomenon is the non-declaration of children with autism. This, due to the mentality or even the fear, has made many parents choose that their children be educated at home and not treated. A troubling problem because it has forced these families to be left out of post-quarantine rehabilitation programs. 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 spectrum of autism and the behavior or treatment in society of individuals with disabilities, with a general and superficial information.
Autism needs more attention – it’s not enough. Eglantina Bajrami, who today is proud of her son’s achievements in university has a message for everyone. “Just as we have learned to coexist with religions, so we must coexist with people with disabilities.”
*The author thanks Ms. Eglantina Bajrami for the interview and the abundant information provided for the realization of this article.