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Tuesday, April 17, 2012

Autism: When Families Become Sick

  • This was my response to what is to me the best Autism Blog on the internet. ThAutcast. My comments had enough good response, that I thought it might merit being put in a blog

    Following, I'm writing on the problem I see with organizations  that prey on the fears of parents. I also write of some of my early experiences, and wish to relay hope.
    They've (Autism Speaks and any organization that does not directly help Autistic people and their families.) made a business that relies on codependency, and they foster it. If they treated the problem, they'd go out of business. I hope one day parents will develop an Alanon-like program that gets honest about where responsibilities for feelings are. "I am the problem at my house," rather than, "I can only be happy if/when they or it changes, exactly like those in other 12 step programs have had to do to save their lives It has nothing to do with Autistic people. Some days the only difference I see in Charles Manson and some of these people is in their housing (I'm speaking of those who have murdered their children in the last few years.)

    Let's say I presented to an ER with a broken leg, so the Doctor does research on my NT daughter to figure out why her hair is the color it is, hoping to make me feel better. They may raise funds showing my broken leg to get dollars for researching why my daughter is not changing her hair color so my broken leg will be ok. They might even put her through strange if not dangerous therapies for it. Why they don't treat the person presenting with the problem baffles me. Autistics aren't showing up with a problem in these places. It's the distressed parents. Altering the child, is not going to cure the parent.
    . No happiness is dependent on people, places or things including Autism. Until that idea is embraced, parents will remain slaves to not only the fallacy that their happiness depends on the Autistic person (who has their own problems and can't fix their parent's), but it is also dependent on this organization. Autism Speaks is the dealer, and the hold they have on some parents is addiction. Unlike a drug that can be taken away, a belief is much harder to free a person from. Some will fight to hold on to it up to the point of death, as we see report after report. Pride and fear rule, as with any addiction, and Autism Speaks magnifies these for profit. Nice for a "non profit organization." 
       We can blame organizations if we want, we can blame Autistic people if we want, (and I'm one too), but no problem I've ever faced since being an adult has been the result of anyone's thinking but my own.

    I put myself through that hell 20 years ago, I was that codependant, and I've spent the last 20 years making ammends to my children for being a mom that could not see that, "happiness was an inside job," that neither they nor anyone else needed to change, but I did, desperately. I was likely as sick as any parent is today, and it was not until I let go of the ideas of perfection and the ideas that my children had to be a certain way for me to be happy, that I began to heal. The sadness is there is no getting through, until that parent hits bottom, and unfortunately, the child and sometimes the parent is often dead before they do.

    I wasted so much time, and drug my children along with me on that self-inflicted sorrow, that I could not see the beautiy of what was right in front of me, and I robbed my children of a happy mom. It was not until I let go, that I could begin to breathe, begin to let them teach me that life was amazing, that Autism could be a beautiful adventure, and that it was ok for me to cry sometimes, laugh sometimes and just sit and stare at a trail of ants and relax, right in the middle of what seemed like the whole world's disapproval, that I became free. I want that freedom, and love for so many suffering parents and children out there. I wish I could reach in my chest and put it in theirs, but I can't. I listen to them rage at me and others just like I did. I watch them deteriorate just like I did, and I watch them fight just like I did, hoping beyond hope, because if someone like me can grow, then it's possible for anyone.
      Here is a blog I wrote earlier called, "Being The Help We Seek." In it are some links to resources.
    tina jones

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