State Education Still Not Accessible to Autistic Children
“I am a free Bulgarian” by Yana DOMUSCHIEVA Georgi is 15 and has an IQ of 130. He learned to read when he was 3. His memory is remarkable. He adores birds and wants to be an ornithologist. Who could resist a smile for such a gifted child? There is, however, no reason to be happy. For 5 years now, the school bell has not rung for Gogo. He has been denied the benefits of an education because he is suffering from Asperger Syndrome. Asperger Syndrome is a autistic developmental disorder affecting specific communication needs. Children with this condition don’t understand or follow unspoken social norms. They find it very difficult to read body language in communication, and only accept the literal meaning of words. They can speak for a long time and not be aware of boring their interlocutor, failing to see the meaning of a yawn or the glimpsing of a watch once too often, and have specific interests and favourite games which they follow strictly. Because of these traits, making friends is extremely difficult for Gogo. He is much more sensitive to noise and light, and is never out without his mother Rayna. At Graf Ignatiev Primary School in Sofia where he started first grade, teachers have no idea how to encourage his inclusion in the class. For a long time his mother came to talk to both headmaster and teachers every day in an attempt to explain her son’s specific needs. While some showed understanding, others unfortunately highlighted his differences and his schoolmates’ bullying got worse. One day while in fifth grade Gogo ran away from school and refused to go back. He explained that other boys in class expected him to fight, but he detested violence. Since then Gogo has been studying at home, but in order to graduate he needs a computer with special training software for autistic children, which he is not entitled to. While the law provides for children with physiological or sensitivity disorders to receive the needed prostheses, Georgi and children like him are left out: the state does not pay towards support for their type of disability. Children with impaired hearing will receive a hearing-
aid every two years, paid for by the Ministry of Labour and Social Policy, but children with development disorders are not entitled to the much needed equipment to help them improve their cognitive and social skills. Annie Andonova and Mirena Koleva, two mothers of autistic children, say that parents cannot even rely on quality rehabilitation tailored to individual patient needs. “The Special Needs Education course taught at universities uses a textbook with a single page on autistic disorders. How can we possibly expect specialists with such a background to help our children?” says Mirena. She gets information on her son’s condition from English language sources and claims that doctors often fail to recognise autistic disorder; instead they diagnose schizophrenia, and that’s that. With a diagnosis like this, the stigma is even deeper and the child is destined to spend his or her life under anti-psychotic medication. A lonely ray of light is the new Social Rehabilitation and Integration Centre for Autistic People, of which Annie and Mirena are two of the founders. Asked whether it was difficult to make this happen, they smile bitterly. It took them three (three!) years to convince Sofia municipal authorities to offer them premises and contract them as a social services supplier. The forty places in the centre were filled immediately and every day they have to send parents away, parents who come to beg to have their child admitted. Sometimes they are faced with heartbreaking cases of young people who have been “raised without understanding for their disability, raised as dogs”, Annie says. “We cannot help these young people, as their asocial behaviour is now firmly established.” Today, the Centre’s small budget allows for 907 leva per patient. Specialists’ work is evaluated at 230 leva only. Even so, everyone is enthusiastic about their job, and each and every child has an individual programme. The Centre is not a school, however; it can offer support but not make educational integration of autistic children happen. It has separate rooms for younger and older children, equipped with sensory stimulation and the much needed computers with specialised training software. The greatest hope of all professionals working with OBEKTIV 1
the Centre is that every boy and girl will be able to improve their social and intellectual skills. “Doctors have not been supportive at all; they sometimes even suggest we leave our children in social homes”, Mirena said. She and Annie are completely devoted to the Centre and their boys. They have long forsaken dreams of career, as the state does not offer any system of support to families like theirs. Gogo’s mother, Rayna, too, gave up her job a long time ago. The family live on 180 leva, the allowance she receives as a social assistant to her son. “Once you’ve been diagnosed in Bulgaria”, Mirena says, “you are alone. The parent becomes the doctor, the psychologist, and the special needs tutor.” Add public rejection to this burden as well. Other children’s parents show no understanding. On the contrary, there have been cases of petitions for suspension of the autistic child from classes, or of fears of other children “contracting the disease”, and even evil remarks and talking behind their backs. What is most painful though is that other, “normal”, children are not being taught to be tolerant, which is more than obvious in Gogo’s case. “In order to return to school, Georgi will need to have a dedicated tutor assigned for him to talk to and see at least once a day”, says Borislava Gitsova, the social worker assigned to this case. Gogo needs help not only in learning the curriculum, but also in the skills required
for dealing with basic real life situations. Each dedicated tutor, however, is working with 5 special need children at the same time. Thus, he or she can only manage a presence of 2 classes per child for a week. Annie Andonova believes that the impact of this awkward academic support is non-existent, for autistic children do not trust strangers and do not tolerate changes in their day-to-day routine. What will happen to Gogo? Will he become an ornithologist? Maybe some company will buy the boy a computer, and he will be able to pass the re-admission exams. Specialists say that professional realisation for people with Asperger Syndrome is possible but for that to happen we need to be more tolerant and understanding of those who are different. Our society still responds with fear and terror to the strange ways of autistic children. Annie and Mirena, however, are already seeing change for the better happening, though “only because we finally stood up for our rights”. They are asking me to say that their children, too, need food, love, and education. Just as other children do. You can contact the Social Rehabilitation and Integration Centre for Autistic People at (02) 9202493 (168 Al. Stamboliyski St.). Should you wish to help Gogo have that computer, please contact the author at firstname.lastname@example.org.