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Friday, January 21, 2011

Endure or Cure. A Post Dedicated to Rachel.

As I have mentioned previously in recent posts, Iv'e attempted to grasp a better understanding of the perspective of those on the Autism spectrum. The writings of Temple Grandin were the starting point as she is  the name most likely to crop up when you google articles by people on the spectrum, and is extensively published. I also had the pleasure of coming across a three part series on Youtube, about a 15 year old boy with Aspergers, titled My Crazy Life. He was so endearing, and also proud of his intellectual capabilties. He was acutely aware of his 'difference', but also of his capacity to understand complex scientific concepts, and the fact that most of us don't. Though probably the blogosphere has been the best place to explore and discover the contemporary discussions and experiences of people with Autism. In particular those often referred to as being at the high functioning end of the spectrum, tend to be particularly intelligent and articulate, and can offer us NTs an interesting glimpse into their world. The best example I have found to date would be Rachel Cohen-Rottenberg of Journeys With Autism. (See blog list). Her abililty to both articulate her day to day experiences and thought processes, and engage respectfully with those of us who struggle to relate seems to cut through the differences so the gap doesnt feel so wide.

The question all this has brought me to is, if there was a clinic that opened today that claimed it had a scientifically proven cure for Autism, would I rush to join the queue? And the answer is no. I hope my son, like Rachel and Rueben, the teenage boy I mentioned above, will be an example of how there is as much to celebrate as there is to negotiate when you have an Autistic mind. Yes there are challenges, but shit, whose life doesn't have them? I don't want to downplay the seriousness of ASD for many families. I understand why many parents with children who are non verbal, being teased mercilessly at school, who are filled with anxieties, and unable to participate in outdoor activites the rest of us take for granted, because their child/ren can't cope with the stimulation or change to routine would rush to line up. I know there are parents who are barely hanging on to their marriages and sanity each day as the unrelenting stress of managing a child who is severly affected by ASD takes it toll. It is for those people first of all that I would stand aside and allow to get the treament they would wish for to end the suffering of both their child and the family unit as a whole. But what of the time the queue has died down? When the clinic has proven it's success and has plenty of spaces available. Would I then venture there to avail Harri of this cure? The truth is I am not so sure now. Preferably I would wait for him to decide. Because he and only he can determine if the positives outweigh the challenges. But man this perspective is a long way from where I was late last year.

I know I may have spoken too soon, and in a few months, or even weeks, I may be wondering how I ever wrote the above. But somehow I don't think so.

10 comments:

  1. What a thoughtful post. There are aspects of BB's autism that I would gladly cure, such as his anxiety, and if there was a cure for over-sensitive hearing I'd elbow my way to the front of the queue for him! You are right to suggest this should be 'their' decision, not 'ours'. When/if a cure becomes available I'll think about what BB would want rather than what I would want. Until then I'll just celebrate the lovable person he is.

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  2. Thanks bbsmum, I'm heading over to check your blog :)

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  3. I agree that choice is a significant factor; the child's choice and allowing the child to choose his/her own fate.

    All of autism is not suffering, any more than life is suffering, but the struggles are real.

    I hope we can devote more focus--including research dollars--on overcoming the struggles than on finding a cure. They are separate problems.

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  4. I think a more challenging question is, if we know how to prevent ASD would we? I firmly believe much of the best science, technology, architecture and arts that we enjoy today are the results of ASD people. What type of society do we risk if we remove these folk from the gene pool?

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  5. I don't know that we ever will be able to prevent ASD. ASD is a behavioral diagnosis. There are many factors the contribute to the number of people with a spectrum diagnosis.

    If evolution is the explanation for human differences, then I think humanity will evolve new ways to contribute to the gene pool even if we try to eliminate or prevent some of them.

    If God is the explanation for human differences, then I don't think we stand a chance eliminating it.

    In a more practical sense, there are plenty of people who would try, but I don't think the whole human populations would cooperate. It would require a dictatorship on a massive scale to enforce such a decision.

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  6. Perhaps it's because my son's ASD is mild, I guess I'll never know, but I agree with you.
    This quote sums up how I feel:
    "A child is like a butterfly in the wind some can fly higher than others but each one flies the best it can. Why compare one against the other? Each one is different. Each one is special. Each one is beautiful." Author unknown

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  7. Evangelos KaragounisJanuary 28, 2011 at 5:00 AM

    Sharon, very well-put. I don't believe that I would ever venture to change a thing about my son Theo whether it was possible or not, preferring to leave such a decision up to him.

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  8. Hi Evangelos, nice to see you made it for a visit. Am very glad to hear another parent agree too.

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  9. I guess, to me, it just feels so all or nothing, you know? I have recently been thinking very seriously about seeing a doctor about a possible ADHD diagnosis in myself. I am in my mid-20s and have not been diagnosed in the past, but my life path has always been so eradic that when I started seeking treatment for my son, it got my wheels turning. I am bright, but I always was an underachiever. I've always thought as myself as having a low tolerance for stress, and attributed my complete, pervasive inability to keep up with my things as some sort of product of my upbringing... but after some careful thought, I think I am wrong. Up until my son was born my coping mechanisms have basically been not ever giving 100%, and that was somewhat O.K. because my 78% percent was, you know, about average. But it is pervasive- it affects my productivity, my ability to time manage, my ability to stay focussed on a task at hand.

    At the same time, it is a deeply ingrained part of my personality. People generally find my spontaneity, raw emotion, and flakiness rather interesting and endearing.

    I'mma still go get me some Adderral. Ha! I mean, but very seriously. I think we can treat what's wrong with ASD without sucking the personality (or soul, depending on who you ask) out of our children.

    Very thought provoking, thank you for sharing

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  10. Secret Sunshine, your comment raises some really interesting issues for me. I need to give some thought before I respond, but I really appreciate your input.

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