Tuesday, April 7, 2009

The Cure Debate Continues

I was about to comment on this post at Life on the Spectrum, but it grew so long, I figured I'd better post it here instead... after all, I don't want to be accused of hijacking another blog.
If you haven't read it, basically she succinctly outlines several sides on the cure debate, culminating with her viewpoint as the mother of an autistic child. You can view her blog for what I actually commented, but let me share with you what I originally wrote:

Well said...

The autism spectrum covers such a wide range of behaviors. I've worked with two main groupings:

When I am invited to speak at aspie groups I find many adults who wish there was a "cure pill" but it's becoming more common to see "advocates" who are like your example of the guy with the broken leg. "We're fine, leave us alone," they say, yet ignoring the condition of the other who can't speak for himself and though he's in a coma, we might expect he would very much like medical intervention for his par paralysis, should he awaken.

On the flip side, there are those children I've worked with who are at the far extreme- spending of their days in restraints/padding, unable to communicate, and where the parents have placed their child in an institution (sometimes works out sometimes doesn't), or in some sad cases, resigned themselves to a life of drudgery.

I don't know if there's a right answer. On one hand, those who are high "enough" functioning could chose to eschew a cure, but what if that decision is made by parents less dedicated to their child than you [the original poster] are? You work really hard to help your son be the best he can be in spite of Autism being a part of his life.

I had one parent tell me she wished her son could take a normal pill because all he cared about was technology, and she just knew she would never have grandkids. She wanted him on the football team, lamented that he wasn't interested in going to prom, and would never be “normal.”

I wanted to shake her and yell, don’t you realize there are parents who can’t even COMMUNICATE to their autistic child, and you’re whining about the PROM? A LOT of people don’t go to the prom. A LOT of people are more interested in technology than dating. A LOT of people aren’t on the football team.

I declined to do so because a) I really wanted to help her son and b) my experience might be skewed by working in the sciences where many of the people I’m surrounded by would probably be diagnosed with AS. So I gave her some ideas to help him see the value of being more "normal" (a core foundation of all advice I give to parents) and went on my way. I've never spoken to her or her son again.

What I'd ultimately like to see is a world where all of the factors underlying autism are understood to the point where we can shred out the condition and determine who can "get by" with non-invasive, non-medical interventions and provide those options, while at the same time offering medical miracles for more severe cases.
So that's what her post evoked in me.

In the short term, what I'd really like to see is more understanding. Understanding from those who HFAs who are self sufficient toward those who need medical (and other) intervention. And understanding from those who struggle with the staggering (and, often horrid) world of parenting a child with autism toward those HFAs who just want to be left alone.


tiffrutherf said...

I agree! I think there are so many voices. I understand where Aspie's who don't want to be cured are coming from, I so get..
But then I see my son who struggles so hard with some issues and I understand why we need a cure.
I don't want to diminish ether argument.. but they do not need to cancel each other out, nor so should they. That's why I say, let find a cure to help those effected the hardest by autism, as they do need help. After that if you are capable enough to say you don't want it, don't take..it solves the problem.
Thank you for the compliments on my work with my son!! You are too kind!

Aspie Bird said...

Good post!! Thank you

Anonymous said...
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Anonymous said...

Here's what I think: http://theaspielife.blogspot.com/2009/04/why-no-cure.html

Steve Borgman said...

Thanks for your most helpful insights. I really appreciate your point of view. I will definitely be subscribing to your blog!

Lorrie said...

What I great post. I will pass this on to my aspie teen and re read it again.