In the year 2024 thousands of people belonging to the autism spectrum remain invisible among us. Their families experience a never-ending Golgotha, fighting for the obvious things regarding diagnosis, therapeutic support, education and livelihood of their children.
The conference organized by Association of Parents and Friends of Autistic People of Achaia “MITOS” chaired by Thomas Gorila, the day before yesterday followingnoon at the Argyri Market, brought to the surface in the most resounding way people with autism, their needs, as well as the inaction of the central and local administration in relation to ensuring their rights.
Royal Baskuta shockedmother of two children and president of the Association of Parents and Guardians of the Special Vocational Education and Training Laboratory (EEEK) of Achaia, submitting her personal experience.
“I want you to remember me and all the families raising children with autism not only on April 2nd, but every day, to make our society better. Because I think that we as parents and our children deserve a place in it” he said and added:
“In 2008 I gave birth to my first son, Christos. Up to 16 months my child had a typical development. At 22 months, he loses his skills and stops looking at me, turning around when he hears his name, understanding what I say to him, carrying out commands. I remember him stereotyping with a sledgehammer that kept banging on the living room table and a 30 second DVD that he kept playing over and over once more. I didn’t understand what was happening, I was trying to stop him and of course the child was screaming.
The first person I turned to was our pediatrician. Fortunately I was lucky enough to know regarding autism and I say this because unfortunately not all pediatricians know and attribute many symptoms to age. Since then, I started a series of tests, so that we might rule out any pathological cause. While I was planning these exams I was also reading regarding autism. When I found out it was a lifelong disability, I caught myself many times, going to get test results, wishing my child had something pathological.
What mother would ask that for her child? I asked for it for Christos. The tests all came out excellent and then the Golgotha of seeking help began. What to do; Where to go; Shouldn’t there be a public body to turn to and guide us, so that we can help our child in time? This happened and continues to this day. I was looking for a doctor to direct me. I heard completely contradictory opinions until someone told me that my child is “burnt paper”. I didn’t want another diagnosis, I wanted to be directed to help my child. I started speech therapy, occupational therapy, etc. and with it me too, so that I can communicate with him…
In 2012 I gave birth to my second son, Damianos. She was a different child, but suspected by Christos, I detected some signs from the first months. How I didn’t lose my mind then I can’t explain to you. So we ended up having two children with autism. This, among other things, meant double the costs of their treatment and care. As an example, when you take your child to the swimming pool, you pay 40 euros a month. If you take the autistic child to the swimming pool, you pay 50 euros per hour, because it is an individual lesson.
Accordingly, for 30 minutes of riding you have to pay 30 euros. But in terms of health, there is no government care. Christos had to undergo two denervations and was not admitted to public hospitals. So we had to find a doctor, an operating room, an anesthetist and much more in the private sector, in order to deal with the dental problem. I do not hide from you that we live in fear of our children needing hospitalization, because there is no care. Our children are in Kaiadas…”.
Referring to education, Ms. Baskuta described a bumpy ride from kindergarten to high school. Closed doors and refusals of admission, schools in unsuitable buildings, without qualified teachers, with the result that they offer at best simple custody.
“We live isolated and desperate. Working for both parents is a luxury. There must be grandparents who are healthy and strong enough to take care of the children. My mother came to me from abroad so that my husband might work. The State is absent. Society is way behind. He does not recognize and respect the child with autism. You get to be alone. Our children need shelters and structures without waiting lists, so that parents can get away, go to work and then have our children in our home in peace, so that we can take care of them properly.”
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