By Juxhina Malaj
“When my son reached 18 months old I noticed that while I was feeding him he lost his sight and could not hear me. At first I did not share my doubts with anyone and I used to say to myself: Please God, let this be a lie.”
April 2nd was the World Autism Awareness Day. Several interviews with parents that have children with autism were made. A few newspapers decided to show their solidarity by dedicating their front page to autism, while other organizations showed their solidarity with other forms.
It always feels right to see media and institutions tackle birth disabilities in Albania, but why only pick one specific date to tackle such issues? Why show your solidarity and raise awareness on a specific date? Sure, April 2nd was the World Autism Awareness Day but why not show solidarity, raise awareness, and help people with autism every day? Not only showing solidarity, but actually doing something for them, accepting them and helping them as much as we can?
Children with autism need to feel loved and feel they are part of the society just like all the other children their age. It is true that they require more sacrifices and more help and attention from their parents unlike children without any disabilities, but isn’t raising a child already a difficult task? Why make these parents’ life even more difficult by ignoring, looking them in a different way or even worse, feeling disgusted by them?
Being born with autism or with any other birth disability in Albania is like taking the first step into becoming “invisible” and a “disturbance” to most people. While it is not known exactly how many children with autism are in Albania, until 2008 there were 4300 children and teens with autism and the number during the last decade has been rising.
As a neurodevelopmental disorder which is characterized by impaired social interaction, difficulties of making verbal and non-verbal communication, making repetitive behaviors, etc., autism signs do not become fully noticeable until the first two years of the child’s life. After their first 2-3 years, autism signs continue to develop even more.
Many parents in Albania lack the necessary information to notice these signs and often are faced with difficult financial situations that “force” them to try treating their children by themselves because they cannot afford to give them a professional treatment and the right medication.
A mother of six who was invited at “Kam nje mesazh per ty” (I have a message for you) show, shared her daily struggles as a parent of a child with autism.
“When my son reached 18 months old I noticed that while I was feeding him he lost his sight and could not hear me. At first I did not share my doubts with anyone and I used to say to myself: Please God, let this be a lie.”
She continued saying that her son later could not react to loud sounds like normal people would and decided to get him diagnosed. After getting the results she had difficulties understanding what autism was and asked her daughter to look it up on the internet in order to find more about it and had difficulties sharing the news with any of her relatives.
Lack of information held a lot of parents down and becomes more dangerous the more time passes as the sooner children get diagnosed the easier their treatment can be in the future. That is why it is important for everyone to have the necessary information about autism and autism signs in order to get anyone that shows similar signs diagnosed and treated as soon as possible and put them into schools designed specifically for them.
In Albania, the number of schools and professional centers designed to take care of children with autism are still very low, while the few ones that are currently operating are not in great conditions. The Regional Center for Autism in Farke, Tirana which was opened in 2013 with the initiative of the Albanian Children Foundation is one of the few centers that provides the necessary conditions for the adequate treatment of around 300 children by a professional staff.
Autism has profound consequences not only on affected children, but also on parents and their social circle. Getting the right treatment is not only expensive taking into consideration the difficult financial situations of most Albanian families, but causes a lot of stress and suffering to families that have children with autism as these children require constant dedication and commitment.
Not getting the necessary attention and getting ignored by the society not only makes the situation of children and teens with autism worse but causes even more suffering to their families when their loved ones are not seen and treated right by the rest of the society.
Not getting integrated early on, causes major consequences over time as physical disorders become a routine and the chances to get back to a normal become smaller and smaller.
The increased number of cases with autistic disorder in Albania is a signal that awareness activities on a specific date are insufficient. Adequate spaces must be created and extensive awareness campaigns must be undertaken throughout the year and be among the top priorities by relevant health institutions, while opportunities should be given to make the integration of people affected by autism easier because autism is a part of the society, and people with autism must be considered and treated as such.
