The Pain of Autism Loneliness Prevent Some Through Fathering Babies Before 34

Autism – a culture within
By Sadaf Shahid 4/2/2008
“I am as good at a two way conversation as a pile of gramophone records/Or a parrot that is talking from a cage/Some lasses seem in rage when they talk to me/I don’t seem to hold the keys to their thought processes” — David Miedziannik, an autistic person, in his poem about his loneliness. As the world observes the International Autism day, it would be instructive to take a closer look at this much misunderstood disorder that so many people all over the world are suffering from. And also what Pakistan is doing to cope with it.Autism has remained a mystery for researchers, neurologists and psychiatrists for centuries. Although the cause of autism is still unknown, a number of strategies have been developed, that have saved so many lives all around the world. Professor Gary Mesibov, calls it a culture. To understand what he means, one needs to define culture. Culture is a shared pattern of behavior. It affects the way we think, eat, sleep, communicate react and interact with each other. It comprises unwritten codes of acceptable and unacceptable behavior patterns which are not taught, but are transferred from generation to generation. These traits differentiate one culture from another. Studies have shown certain characteristics that are common to people with autism. It is perhaps because of the way their brain processes information which is different from neurotypical individuals. We behave the way we receive or perceive incoming information. Or, in other words the pattern of output is the result of input and the way it is perceived and processed by the brain. A person working with people with autism, has a twofold job. He has to be aware of both the cultures. Dr Mesibov calls them “cross cultural interpreters”: someone who understands both cultures and is able to translate the expectations and procedures of the non-autistic environment to the autistic student. So, to teach students with autism, we must first understand their culture and the strengths and deficits that are associated with it.The United Nations General Assembly designated World Autism Awareness Day on the recommendation of Qatar. This is the first ever international day for autism. There are over 60 million people with autism across the world — of which many in Third World countries in Africa and Asia, including Pakistan, do not even have access to any public services. The Autism Awareness Campaign UK is urging Secretary General of the United Nations, Ban Ki-moon, to look into this matter and has also requested United Nations Agencies to reach out and support children and adults with autism in the Third World. The diagnosis of autism has increased tenfold in the last decade (Bold portion should be highlighted in a box)The situation is definitely alarming. In a country like Pakistan, where the socio economic conditions are deteriorating by the day, where reasonable education remains a dream even for an average person, affording rehabilitation services to an autistic child, is well nigh impossible. The few rehabilitation centers set up for children with autism, though well meaning, are not woefully inadequate, besides not treating autism as a culture. For them, it is an abnormality, a mystery, something so complicated that it does not fit in the stereotypic mould of our neurotypical world. Two incidents prompted me to pen down the little information I have on autism. The first was a short video, Autism Everyday by Lauren Thierry, Jim Watkins and Eric Solomon and the other was an interview on a local TV channel of a mother of a child with autism. The video, Autism Every Day, explores the opinions of mothers of young children diagnosed with ASD (Autism Spectrum Disorder). It aims to show the viewer what it is like to be the mother of an autistic child. The movie is very depressing, depicting a somber view of autism — where life is extremely chaotic for the parents and siblings of an autistic child. It shows what the parents go through just to get their child to therapy, to take their medication and to accomplish basic everyday tasks such as getting dressed, brushing their teeth and going to bed. It also shows some of the scary moments these mothers go through, such as when a child escapes and tries to run away. A child with autism might not know what it is to run away from the house. It might be the result of anxiety caused by tidal wave of stimulation caused by a noise or even a hug. Running away could be an attempt to avoid that stimulus with no intention of actually running away. At times they might act “deaf” and sometimes completely “tuned out”. They can’t modulate incoming information. School bells, hair dryers, bathroom vents and shopping centers could be very annoying and bad behavior could occur hours before the event, in anticipation of being subjected to painful noise. The children and adults with extreme sensitivity might fear the sound of flowing water, which is otherwise a very soothing sound. They might break a telephone because they are scared it will ring. A tag on a t-shirt rubbing against the skin could feel like a sand paper. In the interview on the TV channel, when the mother of a child with autism was asked about the future of her child, she replied, “There is no future. I wish he leaves this world before I do”. Having some idea of how much strength the mother needed to say this about her son and what the child went through, it was evident that the mother had received no help nor was she hopeful that any would be forthcoming in the future.‘A Thorn in My Pocket’, a book by Eustacia Cutler, shares the challenges and rewards of raising her autistic daughter Temple Grandin in 1950s. The author tells of how, despite the misdiagnosis of “infant schizophrenia,” she battled on to keep Temple in the mainstream of family, community and school life. What a remarkable story of courage and a desire to keep her own individuality (something many parents lose along the way), and belief in her daughter!Autism affects the entire pattern of life. Considering it an end to productivity, however, would be an unjustified conclusion. It is easy to accept perfect people — though I don’t think anyone in this world is perfect. Integrating individuals, who may not measure up to our definition of perfection, is where the real test of our character lies. These neurological disorders, however abnormal they may be to our thinking, may develop beauties of their own. It’s high time we realized that and redefined our beliefs and expectations. Let perfection be a process, where neurotypical — or, in other words, “normal” — people try to give some space to the not so normal and willingly accept them as people from a different culture with different needs, accepting them — specially the children — as they are.The writer is a speech therapist and works with children and adults who have speech and language disorders. Email: sadaf_sh@hotmail.com