Forum

It has been a long time since I posted a blog. The purpose of this blog is to express the truth I have experienced in Autismland. I felt happy I had the opportunity to help other people with autism, or their parents, or specialists. To my joy, I have received feedback that my book or blog has transformed the way people see their kids. The feedback from students in grad school and some professionals has also made me hopeful about the future. It is so important for professionals and parents to hear the point-of-view of people with autism. The irony is that we are generally not able to communicate in any of the usual modalities of speaking, writing, gesture, or even facial expressions, so the ability to explain is not yet available to everyone, though I hope one day it will be. Because the message is not mine alone I hope to be presenting the words of other non-verbal people with autism on this blog, as well as parents and professionals. Stay tuned.

My Radio Interview for Autism awareness Month

Here is a playable link to the radio interview my mother and I did with Autism Spectrum Therapies in Honor of Autism Awareness month. My interview starts about ten minutes into the broadcast. My segment was pre-recorded because otherwise there would have been  a lot of silence while I typed my replies.
Hope you like it.
http://www.voiceamerica.com/guest/16686/ido-kedar

Trying to Understand the Incomprehensible

I have been thinking about human beings and how mixed we are. In school I study world history. The subject has become hard to take since we began learning about World War I with the massive battles and senseless military blunders. Now we are studying World War II and the Holocaust. My mind is in shock. How are these events even possible? The more I hear, the more I fight the urge to run out of the room.

I think evil must exist in human nature, just as decency must, and we choose which is to be in our behavior. If the Nazis had the idea they were doing a good deed by killing children for being useless, they gained the freedom to rationalize their horrible behavior. My mind is incapable of understanding how one slaughters unarmed, innocent people, but I am autistic so maybe I don’t have the talent that neuro-typical people do to justify and rationalize the incomprehensible. I try to make it make sense. I cannot.

I realize, even now, that evil must be faced head on. We must work to treat others decently. I hope humanity will overcome our cruel nature one day.

Challenge

Every day of my life I face a kind of moral dilemma. My autism makes self control very difficult. It takes more effort to sit still in class than to do the intellectual work. I have big personal goals for myself. I prefer to have a full life than a hidden, bored one in some remedial class like most other severely autistic people. It is my mission to help them get an education too. None of this is a dilemma. I am clear on my goals, but I struggle morally with my inner forces. My body is programmed in a different way than typical people. It has internal orders that differ from my mind's intentions. My struggle to control myself is to be kind to others, thoughtful of the space of others and not disruptive in class. Each day I remind myself to do this because it is the right thing to do in spite of how hard it is to accomplish.

Oscar Pistorius

For those who have read my book, you know that Oscar Pistorius has been a hero of mine. I admired his bravery in exposing himself to doubters, his impressive work ethic and his accomplishments for the disabled. I am aware that every human being is a mixture of imperfections and good qualities and that it is unreasonable to expect athletes to be supermen morally. On the other hand, is it too much to expect that he not murder a cowering woman hiding in his bathroom?

The truth is I can admire his athletic accomplishments still, but so what? There is a moral line that cannot be crossed, ever. He claims it was mistaken identity or an accident, and the trial will determine the truth. This is why we must try to wait before convicting him internally—but I can still feel betrayed by him. By putting himself out there, he became a role model for thousands of disabled people. It is breaking my heart for his victim, his wasted potential and the flawed nature of humanity. The life we have is so precious that the loss or waste of it is deeply sad.

Truth Over Theory

I had an interesting conversation with a university professor this weekend about autism. I enjoyed it very much because he was so open-minded and interested in learning new information about autism. That is like a near miracle. Ha ha. More often, I think, people get used to their theories and stay there their whole professional careers. He invited me to do a training for his staff of professors and has assigned my book to two of his classes. This is very cool. I love the chance to open people’s minds. In the near future I will be speaking to staff at an autism agency, giving a speech to families and staff at a disability support agency, doing an interview on internet radio and maybe more. I hope little by little to help influence a change in out understanding of severe autism. With the new DSM out in May, it is an uphill struggle, but I believe truth will triumph over theory in the end.

Behind the Silence

This story is touching and important. It shows commitment, determination and love and how once again parents need to trust their observations over expert advice. Here was a boy, trapped in his body in a different way than I am, but like me he was not able to talk, gesture or write independently. Therefore doctors incorrectly advise his parents that he is a “vegetable.” My mission is to give non-verbal people the benefit of the doubt. In many cases people have emerged from non-responsive bodies to show intelligence. Why then do so many professionals persist in seeing people with non-responsive bodies as not? The lesson from this film is not just the inspirational one. It should be a caution to professionals against assuming the lowest for their patients based on external observation. Time after time people with cerebral palsy, autism, strokes, comas, and even encephalitis have been able to emerge to show that some of them were thinking while unable to show it.  It boggles my mind that people resist this possibility in so many instances. The amazing thing is that this has been going on for decades. Each individual emergence is a story and no one generalizes it.