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April is Autism Awareness Month. 30 years ago, parents of autistic children were doing their best to bring autism awareness 12 months a year and their aims and activities were very different from now. I think many people of my age have their stories to tell about it.
This article was written after another lost battle (but not the war!) with the authorities and “chief specialists”. All my anger was poured out on the paper.
November 1994
Almost Classics
A MODEST PROPOSAL
For preventing the disabled children in Gorlovka from being a burden to their parents or country, and for making them beneficial to the public.
(Almost after Jonathan Swift)
Historical reference: In 1729 Jonathan Swift wrote his famous satirical pamphlet “A Modest Proposal for preventing the children of poor people in Ireland from being a burden to their parents or country, and for making them beneficial to the public”, in which the author, using parody, with purposely-unbiased attitude, gave a monstrous proposal: Children of the poor should be fattened and eaten to prevent poverty.
Medico-educational reference: There are children with autism in Gorlovka. Autism is a lifelong disability that usually appears during the first three years of life. Autism is connected with differences in the brain’s structure and/or function. Persons with autism cannot relate themselves to people in a conventional way. […] Children with autism can make considerable progress when given an appropriate treatment and education. In the world practice […] many children with autism, when treated and educated properly, can work and live an independent life in the society. One can and must help autistic children to cope with their difficulties and live a happy life, but to do that one has to include them into the community. In our town, however, these children are not allowed to attend kindergartens or schools. They are offered placements in special institutions for mentally retarded, taken from their families, and very often without any education or training. However, for these children it is vital to attend pre-schools and schools, staying with their families. The sooner we begin to work with autistic children, the more chances they will have for a good outcome. […]
Reference, which is threatening to become a historical one: Having got this information and all the necessary documentation, the head of the Education Department V.I. Treshchov instructed his deputies to study the issue and give their ideas about establishing an experimental group for autistic children in one of the kindergartens. And since that time this issue ‘has been being studied’ (since August 1994 to – look out of the window. Don’t you think that there was enough time not only to study the issue of establishing this group, but also to learn a foreign language?) This issue is, of course, very interesting, and can be being studied for many years. But the children are growing up, and every day, month without any work with them is turning into lost years for them. The parents hoped that already in September 1994 they would lead their estranged from all and everything and kept in isolation kids to the kindergarten, where the specialists would help them to enter ‘our world’. Then the officials promised to establish this group in October, now they say – in January 1995. However, this date isn’t final, either. The issue is still being studied…
How close the creative work of the great English writer is to our situation! How modern it is! And how closely it reflects the situation with autistic children (in Swift’s work – children of the poor) in Gorlovka! One just wonders! Can’t you believe it? Judge for yourselves.
The word “autism” entered the vocabulary of Gorlovka inhabitants not very long ago. Now it is used by the persons concerned, i.e. the parents of autistic children. But people who must use this word in their everyday official duty (i.e. those whose responsibility it is to determine children’s well-being) either cannot articulate it or don’t know what it means. What do you think any person with common sense is to do, when he comes across an unknown to him notion and feels that it is necessary for him to understand it in order to use it in his work? A naïve reader would think that this person will immediately study all necessary literature, invite specialists for consultation and, on the basis of the obtained knowledge, he will reconstruct all his work and figure out a new approach to it. But no! […] It is much easier to wave aside everything new and “work” after the old manner, and what is more, after the pattern of the Irish landlords of the 18th century.
In Gorlovka, such landlords appear to be – alas! – women (mothers?). Let us take, for example, the chief town speech therapist Raisa Ivanovna Babich. She uses the word ‘autism’ very often (is it in fashion?), but her understanding of this concept is diametrically opposite to the generally accepted one. In the opinion of our ‘respected specialist’, such children should be kept only in commercial kindergartens. So, dear parents of autistic children, buy overalls for your offspring and send them to work. Let them earn money for their education themselves. Perhaps, we put all children with disabilities on self-repayment? If you don’t like this idea, Babich has another alternative: to place them into the special institutions. Who cares, that the researchers in many countries have proved that to take these children from their families and isolate them in special institutions without any education/ training means to ruin them? We live not in England, do we? For their children it is bad, for ours – just all right. (And why do the laws of this Englishman, Isaak Newton, operate not only in England, but in Gorlovka as well? It is incomprehensible!)
Most of all Mrs Babich gets irritated by the fact that science (medicine, pedagogy, psychology) is developing, and recent stereotypes are completely swept away. And why can’t this science stay long in one place? Or, if the worst comes to the worst, let it develop in the civilised countries, but why is it trying to penetrate into Gorlovka? Only interfering with Babich’s work. Our ‘lady’ and her ‘colleagues’ have been living quietly, and all of a sudden, the parents of hopeless children insist on giving attention to their offspring and on establishing groups for those – forget-their-name. Moreover, they insist that the diagnosis of autism can be given only after observation of children, careful psychological assessment and interviews with parents. And (who would have thought it!) these parents hit upon an idea to have their children diagnosed in the Autism Research Institute, San Diego, CA. For our ‘respected specialist’ this diagnosis is a useless scrap of paper, in Gorlovka it is invalid. […] Nobody in Gorlovka is interested in his opinion. His qualification does not correspond to that accepted in Gorlovka. […] Here, the destiny of a child is determined by a panel of ‘highly-qualified specialists’ who need just 5-10 minutes to diagnose the child. […] And so be it! No changes! Mrs Babich & Co. are against them.
So, dear parents of autistic children, your child does not fit our ‘specialists’ pattern. Perhaps, it might be worthwhile to avail ourselves of Jonathan Swift’s “proposal”, having adopted it to Gorlovka: To gather together all these children and… just not to disturb our overworked chief town specialists. But where? Perhaps, Mrs Babich (as a favour) will show the place where to bring them? To the burial-ground? And no problems for our ‘landladies’.