Wednesday, December 07, 2005

Brutal truth

Yesterday, Sal posted this on Octoberbabies:

"To be totally honest, TOTALLY HONEST - I love my daughter so much just the way she is that if there were a pill invented tomorrow that could cure her autism, I'm not sure I'd give it to her. Sure, I'd love it if she could communicate better and had an easier time relating but I'd be afraid of losing that adorable little character that runs around the house naked scripting, 'Three sides! A triangle! Like Zee's!!!'"

It's been on my mind since I read it.

I understand what she's saying; I really do. I adore everything about Bud. I marvel at his unique take on the world. I love the poetry and music that is his speech. I truly, madly, deeply love him down to the core of my being just as he is.

But if there were a pill invented tomorrow that could cure his autism, would I give it to him?

Would I give it to him knowing that I would risk losing the adorable quirks, the lovable idiosyncrasies, and the fascinating perspectives?

I would like to say I wouldn't.

But the thing is, if I'm being honest -


I would.


Eileen said...

I aslo have given some thought to what Sal wrote yesterday. And if I am going to be totally honest also, I would give Andrew that magic pill in a heart beat. I also love everything about Andrew including all his little quirks, but the frustration I see on his face sometimes at not being able to communicate what he wants to me, would make my decision easy.

Eileen said...

I wanted to add that, like you, I do Really get what Sal meant and am not knocking what she has said in any way.

kristina said...

A pill to help Charlie function better in the world, yes.

A pill take the Charlie out of Charlie?

Not possible. (Said positively.)

Wade Rankin said...

We do our children a disservice if we do not ask this question for any intervention we consider. But if they had the pill, I'd give it to my little one.

Great post.

Octobermom said...

Its exactly what Kristina said - my fear of taking India out of India would be too great.

Anonymous said...

I completely understand what Sal meant too, but I'd give the pill. It shouldn't be about what is best for me, but what's best for my little guy. Who knows what other special things may be hiding in our kids, and it's just waiting to be let out.

Anonymous said...

Kristina, I agree with the distinction you're making between ameliorating problems and changing personality. I think that much of the confusion and argument surrounding the "cure" issue has arisen because people are using the word to mean many different things.

Autism is itself a broad, ill-defined category that includes many different characteristics, and so we end up with a lot of debate and not enough understanding of what others may intend when they use words such as "cure."

I don't think anyone, even the most ardent neurodiversity activist, would argue against reasonable efforts to ameliorate problems. Gareth Nelson, one of the admins of Aspies for Freedom (AFF), often writes that he is very grateful he received speech therapy as a child. AFF has a discussion of this issue on its forum.

Much of the anti-cure sentiment is a reaction to society's use of extreme and negative language to describe the autistic population. Parents are concerned about the emotional harm done to autistic children when the media routinely use terms such as "epidemic" and "catastrophe" to describe autism. Such language also reinforces ugly stereotypes and causes parents to feel hopeless about their kids' future; Susan Senator just posted about this issue on her blog.

I expect that most parents, even those who strongly support pro-cure campaigns, would not find it acceptable to describe autistic children in terms that are so negative as to cause emotional distress to the children. I also don't think there are many parents out there who would want to transform their child into a completely different person.

The two sides to this debate often end up arguing more about semantics, it seems, than about actual disagreements in how they want to see children treated.

Anonymous said...

i firmly believe that fluffy is fluffy and if i had that magic pill i'd give it to him in an instant because what it would do, in 'curing' the autism, is speed grow his social developmental deficits which DO NOT consitute his PERSONALITY!!!!!!!!! his quirkiness, sense of humor, special interests, and fascinating brain would all be there, just there in a body that also could reference, coordinate, read 90% of the non-verbal communication that comes his way, be flexible, AND feel an age-appropriate level of overall competence within himself and IN the world. hooray for a magic pill that could address the decifits for the decifits are what make up the autism and are the things that separates these kids from the NT kids in the world who, heaven knows, have MANY quirks of their own!!

if anything, curing the autism, in my humble opinion, would reveal even MORE of who these kids really are, under coping mechanisms, under confusion, under fear.

Lora said...

I just don't know, I am truly on the fence about it. I accept Griffin for who he is completely but at the same time there are certain aspects of his autism that scare me. I wish that he knew/understood danger, that he didn't wander away,and that he was able to function independently as he gets older. I understand both sides but until there really is a magic pill I guess I don't need to worry about it. I'll stay on the fence I guess :)

Lora :)

Brett said...

I've given this question a lot of thought over the 10+ years since receiving Zeke's diagnosis. It is interesting the effect time has on how you look at the problem, as I wrote in a post a while back on the subject. In the conclusion to that post I ask: "As autistic children get older, their personality becomes more and more not just a product of their disorder, but inseparable from it. If you take away the autism, what else do you take away?"

Recently, I posted a slightly different take on this question when I asked, "If there is indeed a heaven, and our autistic children go there when they die, will they still be autistic?"

Wish I really had some answers, but right now it seems to be all questions.

Great thread, great discussion.

Anonymous said...

This is a hard one to answer. I do think I would give G. the pill to make her life easier. I think she would still be herself, personality wise, mostly, as Kyra says. But I wonder if the little jokes she makes, the funny things she notices about life, and the detail she brings to things would still be there.