A decade ago almost all of us have been uninformed regarding the phenomenon of autism which silently affected children, shut down and handicapped spiritually and physically entire families, and which the stigma and guilt forced them to do what ought not to be done in the name of parental love – being silent and hiding the phenomenon. The feeling of pain, uncertainty, fear, economic devastation, and facing the unknown coexisted in an uninformed society that not only wasn’t aware of the phenomenon, but neither accepted it, nor consequently knew how to help. Today this belongs to the past, though not so far, but we still are far from what it should be and is required.
Years ago I did not think that in such a short period of time we would be able to achieve a progress that we proudly judge as special, as well as very realistically we are convinced how much remains yet to be done.
Opening on 2nd of April, on the World Autism Awareness Day of the Autism therapeutic center in Kukës, ended our dilemmas that Tirana would remain the only oasis for a limited number of children, giving thus hope and support to parents. The model of work in Tiraina is used in other centers such as Korça, Elbasan, Struga etc. The staff that will provide training for the therapists of the center of Kukës will be prepared by a group of trained professionals from the bigger organization “Autism Speaks”.
Service parameters will be consolidated gradually with methods and practices done in Tirana assisted by specialists of the field from the United States.
For the first time after a two-year period, the Albanian Children Foundation in cooperation with researchers of American Universities managed to develop a DVD that teaches parents gradually and step by step how to work with their children. Very soon this DVD will reach the most remote households as a therapeutic self-study program for parents who cannot reach out the centers.
This DVD will be accompanied with the appropriate books after the testing which is being performed by prominent American academic personalities. This study was extended in some cities like Tirana, Elbasan, Berat.
Meanwhile to the library is added another very important book which was completed a few months ago “100 days Kit,” a book that will instruct not only parents but also everyone who deals with this disorder. This book follows the translations of necessary books for parents, educators, teachers and therapists.
Following the publications the Foundation this year began publishing a series of children’s books of this spectrum that will help them implement important and necessary processes. This series begins with oral hygiene, a process necessary as well as difficult for all children. Earlier this year the Foundation set up for the first time dental service for the children of Regional Centers for Autism in Tirana. This was because these children unlike others have difficulty accessing this service and to assist them in dental diseases therapy is very useful with them. Studies have shown that to reduce phobic behaviors displayed by these children for dental treatment studied procedures should be applied, thus we suggest and propose the establishment of several units for dental services to children with autism where the Foundation is willing to provide therapeutic support for the staff that will serve these children. Today these children wander from one clinic to another to receive the service, because for dentists it is difficult to work with these children.
Together with the specialists on this field, after a serious study the Albanian Children Foundation was able to attain the therapy cost scheme of autism therapy. The study of more than a year was submitted to the Ministry of Health wishing of being studied and implemented as soon as possible.
Collaboration with Autism Speaks is an extraordinary luck for the autism community in Albania, as well as in the region. Cooperation with this powerful organization contributed to the establishment of “Southeast Europe Autism Network “, in Tirana, in cooperation with the Ministry of Health, where the Albanian Children Foundation plays the role of secretariat for this network.
Thanks to the services offered at the Regional Autism Centers opened by the Albanian Children Foundation today proudly we say that 40 children have been able to reach public and private system structures, being equal and mainstreamed with their peers. This dream almost untouchable by their families, today sounds common in full public view. Thousands of hours of therapy, patience, and sacrifice, today translate into hours of knowledge and integration.
But still much remains to be done in terms of providing these services. The doors of education should be more generous with these children. Our kindergartens and schools are having many difficulties to be welcoming for children of this spectrum, while children have a big need to integrate with their peers. Stigma and discrimination, in many cases are a harmful barrier for parents and family members.
What I want to raise today and that would be of interest to all parties is the creation of a network of assistant teachers, to create for the children of this spectrum facilitation opportunities of education and integration. The Albanian Children Foundation is willing to lend its contribution to the training of these teachers, there remains only the call of the Ministry of Education and their identification.
Today, a big problem is the absence of official statistics which is a result of the lack of a national strategy. Often journalists, as well as foreign ask: What are your statistics? This question as well as many others because of the many unknowns of this phenomenon remains unanswered. The initiative we took 3 or 4 years ago with the primary health services for screening in some polyclinics of Tirana gave some surprising results.
An unusual flow of parents arrived at our evaluation centers. Children who were diagnosed with autism spectrum disorders began treatment, but this remained localized. Think about the effect that this study would have with a screening focus if it would be extended to all the primary system of the country.
It is time that society does not only gasp showing mercy and pity, but to be aware that there are obligations towards this phenomenon. Today is the moment to pose another question, what about all of those who are of working age? Will these parents continue to live with the fear of what will happen to my child when I won’t be around anymore? This painful and difficult phenomenon demands more effort, knowledge and commitment of many stakeholders.
Let’s get together, says the UN resolution to get involved and to give hope to this population, by affecting through the drafting of soft laws in their well-being. Therefore we must know the rights of the children with this disorder. We must appreciate the potential that they have and give them the chance as all children to education, employment and integration.
Let us give them a hand TODAY so that they will be independent TOMORROW!