Thursday, January 24, 2013

BOXING WITH ALEX AND Our Fight Over Aspergers - Crosspost from Dr. Richard O'Connell, EdD and WPRCA member

               Our Fight Over Aspergers

By Dr. Richard O’Connell, Ed.D. A New York State Counselor of the Year and Award Wining Author.

I never knew how the mind of an Asperger’s person worked until I helped Alex write his book based on his very successful YouTube IN MY MIND with over 1,300,000 viewers.

You see, Alex and I used to fight a lot during the course of putting his thoughts together. We fought about almost everything. And truthfully, I landed several very hard punches, but he ended up knocking me out!

Our first fight was over the cover. I wanted a picture of his wearing a tee shirt imprinted with I HAVE ASPERGERS. He debunked this as undignified and came up with his own graphic which depicts his face and his forehead surrounded with "graphic metaphors" explaining his Aspergers, which are explained in his book. For example, his dream catcher graphic depicts all the bothersome noises that he hears about him and which he can’t filter out and which causes extreme discomfort, like fish caught in a fishing net all flipping around at the same time and can’t get out. He will tend to shut down when this occurs and when he can’t get relief, he can panic.

I won round two when it came to organizing the book. He wanted to organize it around the recorded conversations we had. Alex does not write prose. There were 110 of these and they were disjointed. This was an easy round when I came up the eight symptoms designated by The National Institute of Neurological Disorders. He agreed and we took all the recordings that applied to each of the symptoms to form the first part of the book.

Round three was a draw. Alex has his own style of dress, one of the symptoms, which most Aspergers people have, mainly for their comfort. Alex likes loose cloths, even at times to the point of wearing no shirt in private. So when it came to picture taking and personal appearance, he insisted on being comfortable. I insisted he look professional. "What you look like, is who you are," I would say. We finally compromised, he would wear a loose fitting tee shirt, but over it a very nice shirt, also loosely fitting. The same applied to shaving, here there was no compromise.

The next round he won and it was over the two worlds he lives in. He lives in our world and there is his comfort world. When upset or even depressed, which can happen when he is extremely frustrated or misunderstood, he likes to retreat into his world of fantasy: an addiction to TV, video games, cartoons, or even physical distractions like rubbing his hands or tapping the side of his head. I claimed it was childish. "No," he explained, " I get comfort and relief from these distractions. They relieve my mind of the torture that may be surrounding me. If I am not hurting anybody, why should I give up what gives me relief?" In a conversation with a parent whose young child had Aspergers, Alex explained his concept to her regarding her son’s stims.

(Stimming is a repetitive body movement that self-stimulates one or more senses in a regulated manner.) "If the child is not hurting himself or anybody, let him have some relief." I explained to Alex his concept is controversial, yet he held to it as a firm personal belief.

I was startled to hear why he liked cartoons, not necessarily for the silliness of the cartoon characters, which he enjoyed, but for the imaginative world that the cartoon artist has created. "Isn’t it great to see a character’s deep imprint on a concrete wall when he is bounced off it? This is not normal but imaginative."

When asked if there were a cure for Aspergers, "Would he take it?" In his book he explains it graphically with an hypodermic needle. "If there were a cure, I would not take it. I am very happy in the world I live, despite at times it’s like hell!"

My next battle came over Alex’s theory on Aspergers. Alex claims that Aspergers people have certain gifts which are far beyond the normal and this is attributed to the evolutionary development of the mind. He explains it is like a pie chart. The normal mind has a balanced distribution of parts. The Aspergers mind is distorted with one segment extremely large and gifted. He uses the example of the movie "Rain Man" wherein Dustin Hoffman is a mathematical genius. This is so in other Aspergers people who have a fixation on certain subjects such as physics, or palenotology, subways, cars, etc. They have a superior knowledge of these fields, beyond the extraordinary. Alex claims that now this causes an imbalance and their gift crowds out some of the other components, such as social skills, common sense, appropriateness, etc. Now, I tried to explain to Alex that some medical experts claim it is a virus that the defensive system of the body at birth can not contain, as recently written up in the New York Times.....You be the judge.

Alex may have won the following round when you read what he has to say about his particular gift. His gift is his capacity to understand himself and how his Asperger’s mind works. He is able to clarify and illuminate his particular kind of Aspergers. (Not all Aspergers people have the same symptoms.) Alex is able to think metaphorically and then translate his concepts into images as seen above. Again and again, he covers every aspect of his disorder. The explanations of his struggles and the pain he experiences would bring some to tears and his common sense approach to life can he hysterical. You sympathize with him when he wonders at 12 years of age and in appropriately kisses a girl in public. You’ll laugh with him when he tells one of his teachers who is forcing him to sit normally as opposed to sitting comfortably for him in Indian style, "This is not a booth camp, mister." Alex explains that the above is an example of the lack of knowledge that teachers, staff and other educational professionals have and it is one of the main reason why he wrote his book.

The knock out blow for me came when Alex delivered the reason he wanted to write his book, "I just hope that because of this book, and showing you the way I learn, and the way I express how I feel, that you guys can understand me much better. And treat people with Asperger’s as equals, and calmly give more respect to us, and treat us right, and not consider us as just plain odd people who want to get what they want. And if so, I’ll finally be understood, and have a break once in a while." Alex Olinkiewicz

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