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Wednesday, August 11, 2010

Don't cure me....cuz I'm not sick

The biggest issue I have with organizations like Autism Speaks is their persistent push for a "cure."  If autism were like measles, or beriberi, or AIDS, I'd say, heck yeah, let's find a cure.  Because those diseases kill people.  But autism isn't a disease.  It's a disorder, it's problematic, it's an interference and it's devastating in its own way...but it's not a disease, like pregnancy is not a disease, like being black is not a disease, or gay, or short.  It's a status, it's an immutable, but it won't slice your life expectancy in half.  Herein lies the rub; I think that the well-meaning, well-connected, but ill-read people at AS think that if we just...I don't know, do what?  Tweak a gene?  Electroshock a brain?  Inject a protein?...that the autism will all but disappear.  Isn't that what we all want?  For it to go away?  I do not.  I posit that the differences in children with autism are so valuable, so fundamentally necessary to how society regards itself as masses of cognitive entities, that eliminating the autistic is a disservice to us all.  We need to see that difference is important.  Variance has value.  I don't want autism to be erased from my child if it means that she is no longer the child I know and love.  I think a better use of resources is for therapy to bring those children who are so impaired as to be unable to manage their lives independently into the fray of functional, the realm of workable, the world of welcome.  We need to alter our view of what it means to be essential to the larger culture.  It isn't being perfect, intact, "normal." It's offering counterpoint, demonstrating tolerance, and offering appreciation for those who do not move through life in lockstep with the rest of us.  My kid's not broke.  Don't ask me to fix her.


Anonymous said...

I think I agree with you. This year for the first time we walked for Autism Speaks, and I found myself disturbed by words like "illness" and "cure". I didn't include them in the fund raising emails that we sent.

The hard part for me, however, is that I do think we need more research, because research could give us better, more effective treatments. So, I walked to raise money. I felt a little like I was selling out. But I don't think I did any real harm.

Ammie said...

Thanks for opening my awareness, Sarah. Very thoughtful piece, I think. The more I rad about the autism spectrum, the more I remember my experiences growing up with my cousin who was diagnosed 20 years ago with an autism diagnosis that, to my childish eyes, seemed to make one-size fit all and then, about 12 years ago, "cured." Not to undermine the stamina, effort, and joy he and his family demonstrated, but I see in your discussions an incredible growth in the autism awareness that goes beyond my own growing awareness.