Tuesday, August 14, 2012

Autism Cure Research - Session 2

So I've been collecting lots of links and reading many articles, but I was struggling on where to start this next entry.  Until I remembered one of the most-profound things I ran across while researching.

I've read [and seen first-hand] several accounts of people wanting their children with autism cured.  When I try and talk to them about how I feel about it, I end up getting flack because I'm "not as bad-off" as their kid.  It is true, I have less-obvious deficits and I am able to be verbal in social situations [though not always in stressful ones].  However, I had a feeling that even autistic individuals who had more-severe deficits likely felt the same way I did [at the basis of this is a different 'wiring' in our brains and we tend to be very logical] and so I recalled something I had read regarding Amy Sequenzia: 

 [click image for link to interview]

Through reading Amy's work [and there are several others through ollibean] I felt that this was confirmed.  While I can understand the pain of not feeling like you're meeting the needs of a loved one [that one truly is both ways] may be it will help to read the words that someone very-similar to your loved one is expressing.  Everybody has unfilled needs.  Even NT kids have issues with bullies and making friends or not fitting in with the crowd or the cool kids.  Everybody wants something which is unobtainable [and if everything is always obtainable I would like my centaur-boyfriend promptly delivered!].  Everybody should also want things that are just out of their reach for it is that want/desire that challenges us to grow.  The giraffe was not born with a tremendously long neck, that neck was earned.  I was not handed the innate ability to automatically decipher the social ques around me, but I strive a little harder each day to learn more.

Once you get into this whole argument over whether I'd like some things to be easier or whether I take or took medication at some point it is almost as though no one understands that some of what makes my life harder also makes it my life.  Yes, I get overstimulated and sometimes I cannot cope with that.  But at the same time, my entire outlook on life is so different.  I would never dream of giving up my intellect, my thought-processing speed, my ability to see things from multiple angles, the gift of being able to look at something without emotional attachment, my amazing problem solving skills [which do get noticed], the fact that bad memories tend to fade [or if I have a bad experience, I cannot remember the person's face who gave me that experience and so I don't treat them any different the next time], my naive and open outlook on life [I always expect the best of everyone], and the list goes on and on.  Those things make me who I am.

Now, I did promise some research in this thing so let's see if we can get more than just 1 external link...
First, I want to start with "'non-verbal" autism by directing to an about.com article.  Summary: "non-verbal" autism could mean that a person is physically unable to orally speak or that the person is unable to use spoken language effectively/cohesively/etc.  Those people may [and several do] have the ability to speak but may do it through written work, picture cards, sign language, etc. 

I really intended to go more deeply into research and cures, but the farther I dig, the more upset I get.  I have to once again rely on MamaBeGood [because I really do not need to reinvent the wheel] for her awesome words.  I think the root of all this "cure" nonsense is the way in which the narrative about autism is expressed.  NT parents, caregivers, etc. hash and vent all the terrible things and there is not much focus on the positive things.  NT's frustrate the biggeldy-puck out of me yet I don't think they should be cured.  I've gotten into an argument about acceptance and that since I'm part of a minority [which is supposedly increasing, though I do not fully believe that] I should have to adjust instead of a greater population learning about me.  That is completely against the social narrative of this country in which I live.  There are far less people in wheel chairs, should we remove the wheelchair access ramps?  No.  We all deal with access ramps because of that portion of the population that relies on them.  How many times have you used the handicap door button? [directed to those of you who do not have a necessity for this item]  Did it not make your life easier when you were trying to get into a building while carrying items?  Maybe if you can adjust to take ASD's into consideration you may also find parts of your life get easier.  We really do have things to contribute if you give us a chance.  We're not smallpox that needs to be eradicated.

I honestly meant this to be far more "social discourse-y" but it actually ended up rant-y and it's almost 2am [which is my bedtime].

1 comment:

  1. Actually, here's a thought and then I really am going to bed...

    It's one thing to adjust behaviors or deal with sensory/social/etc. issues - just be mindful that deeper diagnoses are not missed and that the therapy for one thing does not make another thing worse.

    ReplyDelete

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