TACOMA, Washington — Life for people with autism spectrum disorder can be challenging, especially when they are deprived of proper educational resources, tools and support. Today, Turkish-based NGOs are emphasizing the struggles of individuals with ASD and their families. The NGOs are calling on the government to pass more extensive and protective legislation for those in need.
Background on Autism Spectrum Disorder
The World Health Organization estimates that approximately one in 160 children has some form of autism spectrum disorder (ASD). However, as a result of fewer studies in some parts of the world, the prevalence rate of autism spectrum disorders is likely higher than official estimates. One 2016 study stated that approximately 50% of all new ASD diagnoses for that year alone were the result of changes in diagnostic practice, rather than the actual prevalence of the disorder.
Prior to 2011, nearly all studies done on ASD were conducted in affluent Western countries. In these countries, families of people with ASD generally have increased access to diagnostic resources and medical assistance. One 2020 study specifically names the Middle East as a region in which diagnoses of ASD and related resources are limited.
Autism Spectrum Disorders in Turkey
In Turkey, advocacy for ASD awareness has risen in recent years. This is in large part due to the increase of diagnostic accessibility and recorded ASD cases. However, many feel that the government is still falling short in caring for individuals afflicted with ASD in Turkey.
According to Sedef Erken, one of the founders of the Istanbul Association of Autistic Volunteers, the government does woefully little for Turks with ASD while simultaneously promising social and legislative support. In one 2020 interview, Erken stated that the government promised imminent policy change after successful lobbying in 2012 in Turkey’s “Autism action plan,” but the agreed dates of the plan have since passed without any attempt at reform.
Turkish Special Needs and ASD Policy
Turkey’s primary piece of legislative protection for people with ASD (and more general disabilities) comes in the form of the 2005 Turkish Disability Act, which, according to one source, was partially meant to “reduce the legislative clutter” of a variety of different disability laws. One 2016 study analyzed the act in comparison with the U.S. disability policy and standards from the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). The study found that, while the Turkish Disability Act encompassed many basic protections, it lacked the cultural responsiveness of other standardized policies around the world.
In other words, the act does not factor in elements like ethnicity, religion or differences in culture for families with autistic children or relatives. Additionally, the state provides no legislative protection with specific regards to ASD in Turkey, instead referring to “disabilities” as a blanket term.
Education and the Impacts of the Pandemic
In the field of education, the disadvantages of those with ASD in Turkey become all the more clear. One study found that special education teachers did not have to take preparatory courses in autism, despite the growing number of autism diagnoses in Turkey. Additionally, the study also found that preschool teachers, primary school teachers and school counselors only received a one-to-two-week course on autism in preparatory courses.
According to Sedef Erken of the Istanbul Association of Autistic Volunteers, nearly 80% of children with ASD in Turkey drop out of primary schools as they have to rely on familial support or pay for private education. Erken adds that many schools see children and youth with ASD as a burden.
The COVID-19 pandemic has also made a precarious situation even worse for students and children with ASD in Turkey. One study conducted last year focused on children with ASD and their parents. Around 55% of all parents surveyed saw an increase in their child’s aggression, nearly 30% saw a decrease in their child’s social skills, and an additional 26% noticed an increase in their child’s tics.
One father of a child with ASD, Bülent Kırgöz, relayed his experiences of childcare during the pandemic to The Daily Sabah. Kırgöz emphasized that following curfew rules, wearing a mask and staying indoors were difficult to explain to children with severe cases of ASD. Moreover, without governmental guidance, many families were left to fend for themselves.
Outlook for Individuals With ASD
Earlier this year, Turkey’s ruling Justice and Development party promised another bill for those with special needs. Party deputy Kemal Çelik stated that the party hopes to pass the bill sometime this year. Fortunately, organizations like the Istanbul Association of Autistic Volunteers and the Tohum Autism Early Diagnosis and Education Foundation are also continuing to persist in their mission to secure further protection and support for those with ASD.
According to one analysis by Dr. Molly Candon at the University of Pennsylvania, clinically diverse conditions like ASD can sometimes make creating effective policy difficult. This creates a “services cliff” that deprives people with ASD of essential resources and support. In Turkey, the government has taken no specific legislative approach in regard to individuals with ASD and their families. This leaves those in need without care. However, many are hopeful that with the continued work of figures like Sedef Erken and humanitarian organizations, the community can push for new legislative protection for autism spectrum disorders in Turkey.
– Madeleine Youngblood