Autistic youth in Turkey have pressing problems, but authorities never manage to find the time to solve them, according to one of the founders of the Istanbul Association of Autistic Volunteers.
“There are promises, but they remain unfulfilled. With the government preoccupied by other issues, there is no time left to deal with autistic individuals,” Sedef Erken told the Hürriyet Daily News ahead of the Commemoration of Atatürk, Youth and Sports Day, an annual Turkish national holiday celebrated on May 19.
How would you describe the state’s approach to individuals with autism?
There has been no specific approach to people with autism. Efforts began in 2012 thanks to our initiatives, and as a result, there is a legal document that was made public in 2013 and published in the Official Gazette in 2016 — the autism action plan. But the plan has not been implemented as all the deadlines set have expired.
What are the fundamental problems of autistic youth?
The problems start from the moment they are diagnosed, which usually occurs between the ages of [18 months] to 3. At that stage, the family should start receiving social support and preschool education. None of that happens in Turkey. After diagnosis, you apply to the Education Ministry and, following the assessment report, you receive two sessions of education a week in institutions where it is very difficult to find qualified personnel.
Only recently are there new graduates from educational departments, but they receive theoretical education and it takes time to gain experience. And in general, they prefer to work for the state bureaucracy rather than in special institutions for autistic children. So even if children receive an early diagnosis, they cannot get a quality education. An autistic child starts life with a 100 percent disadvantage.
And the problems that come with this disadvantage start growing in time.
The future of autistic individuals is not planned; there is no formula on how they will continue their lives after their parents and family members pass away. This is our greatest worry because we witness cases in which children are confined after the death of their parents to institutions with insufficient expertise.
How do families try to manage?
Many can’t manage. You have to be very rich to manage it by paying privately for education. Even children with mild autism drop out of school despite the so-called integration system. Some go to schools for the handicapped, and others are confined to homes. Eighty percent drop out after primary school, and there are almost none that make it to university.
Why do schools fail to keep them?
Schools try to manage it with teachers who have no training on autism. Families with autistic children find themselves confronted with school administrations, teachers and other families who ask school administrators to send autistic students away arguing, “They are obstructing my child’s education.”
This gives a clue as to society’s approach to autistic individuals.
Families see schools as places where students are prepared for university exams, not as educational institutions. So the presence of an autistic child is seen as a burden.
The kindergarten in my neighborhood did not accept my son; neither state nor private schools accepted him. I couldn’t get any result when I filed a legal case arguing he was discriminated against. I applied to the European Court of Human Rights, which handed down an unjust decision claiming discrimination toward one child does not amount to systematic discrimination.
But a lot of people would say that the state has become more sensitive to the needs of people with disabilities under the rule of the Justice and Development Party (AKP). Families with a handicapped member have started receiving cash support, for instance.
This is partly just. But I wouldn’t call it sensitivity. States are not sensitive; they have systems, principles and practices. By the way, this sensitivity did not emerge until the European Union told Turkey to do something about it in 2005. It was displayed in order to adapt to EU regulations.
Yes, there is cash assistance, even if the amount is below world standards. But even that did not exist before. But this is just a partial contribution. We need a 360-degree support mechanism. Not one brick has been added to the financial assistance.
Are you claiming that the state tells you to take the cash and not ask for more?
Not exactly. There are promises, but they remain unfulfilled. With the government preoccupied by other issues, there is no time left to deal with autistic individuals. Autism requires expertise, and the time never comes for autistic individuals.
Autistic people experience problems like all people with disabilities in Turkey, but they have extra issues depending on their [type of autism]. They share the same problems with a blind person, but also problems that are of a totally different nature.
All people with disabilities are treated under one roof in our country.
Also, some families refrain from voicing their needs. Some of these families’ attitude toward the government is “double the cash assistance and we won’t come back.”
[As NGOs], we try to formulate the demands of people with disabilities. Our problem cannot be solved just by criticizing the state. In one meeting with the president, I heard with my own ears that they are aware that people with disabilities have their rights and they want to expand these rights and that they are not [just] doing a favor to families.
The correct principle is there, but you need a budget and organization to implement it. So there is a need for an integrated approach.
The government has to take leadership in terms of guiding families, educators and the like.
How have families been coping with COVID-19, especially with the imposition of the curfew for those 20 and under?
It has been tremendously difficult. Actually, we are used to living in isolation. Staying home, without socializing with others, not being able to do any social activities — these are not unknown to us. In that respect, we adapted faster. But the special education centers and sports and activity centers which are of vital importance have been closed and 24/7 confinement has led to serious difficulties at home.
Some families have lost their incomes; in other cases, families have had difficulty explaining the situation to their children, who have started to overreact with tantrums. Some have become physical, going violent and breaking everything at home. Parents have experienced difficulties in keeping them at home. We had cases of children who got lost. In fact, we have one case who has been lost for 22 days.
What kind of assistance can the state provide during the pandemic?
At the beginning, the Interior Ministry issued a decree enabling families to take their autistic members out for a walk. Right now, the most important issue is how to make up for the lost time in terms of education. But we have heard that some personnel in special care centers have been laid off. It is important that education and sporting and activity centers should start working once the lockdown ends.
*Who is Sedef Erken?
Sedef Erken is a graduate of Ankara University’s Law Faculty, although she also studied social services at Istanbul University’s Distance Learning Faculty.
Erken has held executive positions in the cultural, artistic, entertainment and retail sectors and has worked as a lawyer with several
producers, writers, artists, directors and content developers.
She has been woking as an activist on autism since 2009 and is one of the founders of the Istanbul Association of Autistic Volunteers.
Erken, who is the author of the book “The Cat’s Eye,” also writes for daily Cumhuriyet’s website.
Hurriyet Daily News