Thursday, August 23, 2012

This CURE needs salt

There is lots of debate about "curing Autism".

I recently read an article about a study involving banked cord blood. They want to give children with Autism infusions of their own cord blood to see if it will "cure" them. We debate about finding a cure but this is the most legitimate attempt I've heard of. (though it does not apply to us since they are only using children with no genetic autism markers) The study was sparked by a boy with cerebral palsy that made shocking improvements almost immediately after his transfusion....something like that makes you really think.

I love my son for the amazing smart boy he is and wouldn't want to change a thing...but what if he was still non-verbal? What if he was so low functioning I didn't see the glimmers of personality that are him?? Would I feel the same if I was having to research group homes? I feel for parents who go through this and being completely honest, sometimes I feel guilty for complaining about his Autism to you guys because I KNOW we have it good.
I get to hear his voice, see his smiles. I see just how incredibly intelligent he is and sparks of how he looks at the world. I get to know him, even if it is not on the level others get to know their children. Poop smearing, meltdowns, speech delays, sensory overload, social skills and elopement aside, my son has SUPER talents and I celebrate them but where is the line?

As a fellow parent I would not judge someone for wanting a cure for Autism as long as it wasn't because you just couldn't accept that your child was different...I have met parents that are so focused on how their child isn't like everyone else that they don't see how amazing their child really is, or how damaging their attitude can be. THOSE people talking about a "cure" set my blood boiling. I guess the line would be how debilitating is the autism?

Let's enter metaphor land: if you are cooking a meal, and autism is salt, a pinch makes it awesome, a little more and it's a little hard to eat but you can manage, add more and you get jerky, but any more and it will kill you. In the realm of "Autism Pride" is severe autism worth an attitude like "Autism is awesome no matter what and the idea of a cure is offensive"? Quality of life should be a factor I think. Any other special need and I don't think there would be debate like this.

I think a lot of the debate is mere semantics. The wording getting everyone's panties in a bunch. We ALL want the best possible life for our children and loved ones on the Autism spectrum. Plain and simple. Does the label of the means matter so much? (For a group obsessed with labels lol) Let's use the cord blood as an example: if it did help with severe symptoms of Autism, would that be curing it or treating it? If a therapy successfully changes a behavior is that curing it? And the cord blood is a naturally occurring substance made by the person receiving it...doesn't that mean healing something that was damaged?

I don't think Autism is the result of a damaged person. I think Autism is salt. Without salt, everything is bland, but too much salt and you've got a real problem. I love salt! ....but that doesn't mean it doesn't give me high blood pressure from time to time. lol

14 comments:

  1. The cure argument is easy to refute when your child has an obvious personality but it becomes more difficult to refute with more intense symptoms.

    Unfortunately, refute it we must because the alternative is the beginning of a slippery slope in which everything not-"normal" or not-"perfect" gets "fixed".

    I have met people who adamantly seek a cure for their non-verbal children and it seems that they're doing it all for the right reasons.

    but....

    Hanging onto false hope prevents them from properly accepting their child. If I hadn't seen some of these people completely turn around in their views and find a happy acceptance of their child, maybe I'd be more accepting of a cure - but I have seen this. It's beautiful to see, it's worth the fight and it's an amazing path to happiness.

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    1. I agree that this is a slippery slope. It seems that the "Autism Pride" movement and the "cure" movement are two polar opposite sides of the same issue. Going full on one way or the other seems dangerous to me. I do not see autism as something that happened to my son, it is just the way he was born, created. Not all people see it that way but that doesn't mean I'm going to look down on them because they see it differently, I just wish we as a group could find some common ground on this.......

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    2. Gavin, I really had to stop and say "Wow" for the last paragraph of your rebuttal. That's exactly how I feel.

      I read it back to my wife and she said "What happens to the parents and the kids if a cure is never found?"

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  2. Interesting - I wrote a post recently myself about how I wonder if some people just mean tweaking certain behaviors when they say cure. http://aspieside.wordpress.com/2012/09/02/what-does-cure-mean-to-you/

    I try to not judge people but the word to me means separating everything autistic. If someone wants to help their non-verbal child learn a way to communicate with others that is providing supports, treatments, advocating for acceptance of devices such as ipad when needed. etc.

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    1. First off I want to say I liked your post. Second I want to say you gave me some new perspective.

      That being said, try to put yourself in the shoes of a low functioning family. Hold on, let me finish, I mean no offense. A situation where communication is not possible. I’m talking about a family more like what I hear Autism Daddy describe. His son has been hospitalized so many times for not eating, making himself gag and throw up as well as seizures and other incidences. He was even turned away from school because of these things. This is their only son. He is completely nonverbal. So a family that may NEVER have an improvement.

      Okay now the point I'm gonna make is, that for those parents, it is hard to see the AWESOMENESS that can be Autism. They have never witnessed the SUPER skills some of us see that are because of the wonder of the Autistic brain. They only experience the gut wrenching, never ending, ugly parts. My only point is, maybe go a little easy on them for throwing around the word "cure".

      Acceptance goes both ways and I understand literal interpretation but you have pointed out that you now know what is trying to be said. So why still be offended? or maybe more why not narrow the focus of the indignation? Those families are the only thing that gives me pause when it comes to embracing "Autism Pride" fully.

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  3. I was touched by your post when I saw it on Flappiness Is... FB page, so I shared it on Google Plus and Twitter. The Google post has had several interesting comments. I'm not posting the link because I do not want you to think I am spamming you, but you can find my Google Plus if you enter D. S. Walker + Google Plus.

    Mahalo for taking a sensable approach to a difficult and very emotional topic.

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    1. Thank you for sharing it! I commented as my personal profile. I was suprised it got so much attention for you lol

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    1. Dude? Ive been called worse lol and thanks for the applause! ;)

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  5. So well written, happy to have found you.

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  6. Nicely written! Glad to have found another blog sister!

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  7. A friend shared you blog on our facebook group Blogging Together for Autism. You are welcome to join. I enjoyed your post.

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  8. As a mother of an autistic child myself, I would love to find a cure. To find a cure not because I don't love him, because my son means the world to me, but to find a cure to help him. Help him live his life when I'm gone. Help him love others when mommy is not there any more. I'm sure people out there who want a cure not because they don't accept their children but they are doing it out of LOVE for their children. It's a different perspective I guess and I completely respect yours...

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  9. Just going to put it out there that we've got people who've been in the kid position of that "severe autism" thing and are now communicating. Take a look at what they think? Amy Sequenzia, Larry Bissonnette, Tracy Thresher, Hope Block, Sue Rubin, and Carly Fleischmann makes a decent start- none of them speak and they've all been considered unable to communicate. My biggest worry about a cure is honestly the fact that I can't trust it to be voluntary for the autistic person who would be cured.

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