Friday, June 30, 2006

Soapbox time...

Today began in an interesting fashion... B had been watching "The Empire Strikes Back" (he gets up pretty early, so often quietly watches a video or dvd until the rest of us are ready to get up) & I had asked him to come down for breakfast when he got to the end of an action sequence. I decided to check the email while I was waiting for him... & found one from an acquaintance from church that really set me off... This acquaitance is one of those people who sends reams & reams of stuff, much of it of a spacey-spiritual sort, & I had just about convinced my junk mail filtre that her stuff was, indeed, junk, when she became the chair of a committee that I correspond with... sigh. So I had to de-junk her address & put up with the reams. As it turns out, I had the opportunity to do some educating today.

She sent me a link to a site trumpeting the virtues of a "promising new treatment" for autism. This got my back up, but I dutifully checked the link & discovered that it was for something called "zeolite" which is supposedly "inert", & totally safe for the treatment of the effects of, you guessed it, mercury & heavy metal poisoning :S It is being advertised as a "wholistic" alternative therapy :S :S The "inert" bit really gets me since, from a scientific point of view, that would mean that it doesn't actually do anything... So I replied with the following email:

Linda,
The problem with this "study" is that is has not been proven that mercury or any heavy metals cause autism. Many parents desperate for a "cure" for their children are sucked-in by these terrible claims, often subjecting their children to life-threatening procedures in order to "cure" them. Otherwise healthy children have died from these procedures. As benign as this zeolite treatment may be, it still carries the toxicity of giving false hope of "cure" for autism. Also, I'd like to point out that the word "inert" used to describe zeolite, means that is has no effect. That is what this means, scientifically, so I was suspicious of the "research" the minute I saw this word. Charlie & I are fortunate, my having been a laboratory scientist & Charlie being a physician, that I we can read these studies & evaluate them on their scientific value, & believe me, there is alot of specious stuff being passed off as science.
All current authentic research into autism shows that is is a condition that arises prenatally, & does not occur by poisoning after a child is born. Charlie & I have researched this extensively & firmly believe this to be true. The greatest harm perpetuated against autistic persons is that they have a "devestating" condition that must be cured at all costs. I am in communication with autistic adults, whom I met though my blog describing our lives with a child with autism, & they describe happy, functional adult lives, particularly when they have found employment that does not discriminate against them for their differences, & when they have been able to get rid of the baggage they've collected over a lifetime of being different. Charlie & I believe that the least toxic approach to raising a child with autism is an wholistic one- accept your child for who they are, find the best help so that they can live life to the fullest, & find the best "village" to raise them in. Raising a child with autism is a challenge, but an exhilarating one for those who are up for it, especially if you can love & respect your child for who they are & let go of your own baggage about who they will not turn out to be.
Linda, I would ask you to please be more careful about the information you send out to others, in the name of being helpful. Living a life of frantic search from "cure" promise to "cure" promise does not seem to me like a terribly wholistic or spiritual one, & that is exactly what happens to the poor families that are caught up in the struggle between what society tells them they should think/feel about their child with autism & what, in a better world, they could gain from this experience. Many people don't even understand that they have a choice about how to think or feel about their child, they just look for radical "cures" . If we're going to help these folks, we need to emphasise the joys amidst the pain of raising a child with autism, not offer more frantic, fraudulent hope.
I offer these thoughts with an open heart & hope you will accept them in the same way. -Lisa


I was pretty fired-up, as you can see, but tried to be kind, since I firmly believe that no-one accepts criticism when they are under attack. I did receive a nice, but pretty vague reply. It was more that I expected, actually...

The interesting part of this whole incident was what happened afterward... While I was composing this email, B came downstairs & proceded to make himself breakfast. He ate, cleared his place, brushed his teeth- & I was still furiously typing away (my early morning fingers just didn't want to co-operate...). Finally he asked me what I was doing, & I explained that someone had sent me info about a "cure" for autism & I really wanted to set them straight. He was incensed. Why would anyone want to cure him??? To be fair, I explained that not all kids with autism could communicate like he can, & many families have a very difficult time figuring out to help their kids. But I also told him that many families do want to cure their kids of autism & do not value them the way they are, & that his dad & I do not share this belief. He told me he was very glad of that. Then he asked if he could read the email. I was at the editing point, & weighed this request for the potential for upsetting him, & then said yes he could read it. So he read as I edited a few things for clarity & repetition (did I mention I was fired-up?). After he read it, B hugged me & thanked me for writing it. Whoa...

After I sent the letter & began making my long-delayed breakfast, B asked me more about the mercury poisoning thing. I explained that some people believe that their kids weren't born with autism but had been poisoned by their vaccinations, since some kids appear to be developing normally, but then change about the time they receive their MMR vaccines. He had a quizzical look on his face at that. He asked me if we had observed that with him, & I said that, although I did begin to think that B had ASD at about the time he'd had his MMR, it was very clear to his dad & me that he had been very sensitive to sensory overload & since he was born & that his development had been different than most kids'. We talked about how we discovered B's developmental delays, how his hearing loss when he was 4 years old had made his teachers think that that was the cause of his delays, & the long process by which we discovered that he had autism. We talked a lot about his visual/ perceptual difficulties (B did not have binocular convergence, so was not able to focus on objects until he'd had 1 1/2 years of intense therapy). We talked about my fears that he'd never read (that surprised him) & he decided that all that work had been worth it :) B also decided that he wanted to think about making a statement about how he feels about having autism. I told him that I'd be glad to put it in my blog if he did, & that I thought it would be really helpful to others to have his perspective. I told him how much reading the blogs of adults with autism, such as Zilari's "PartProcessing", helps me understand B so much better. So... we'll see. He was almost as fired-up as I was, but the energy waned & we moved on to our first project of the day, starting to weave a blanket on the big loom (B is really psyched about it!). Stay tuned...

4 Comments:

At 8:08 AM, Blogger MOM-NOS said...

Very, very well said! I hope that Linda takes the time to try to understand what you wrote. And what a great conversation for you and B - hooray for you both! If B decides to write a statement, I would LOVE to read it. No pressure on him, of course.

 
At 7:20 PM, Blogger not my blg said...

I'm surprised you haven't received more comments on this most "excellent post" as Bill and Ted might say. I think you were very measured in your response. The constant ignorance we face in our daily lives can sometimes be overwhelming. For instance, I'm now the resident authority on autism at work and everyone asks me- I saw this kid and they were doing this- is that autism? I don't mind educating people who ask but I now regret ever discussing Alexander's label. I am very grateful for Alexander and what he has taught me about myself in particular. He has made me realize that I wasn't imagining it when I thought "I'm different". At 3 years and 4 months old, Alexander is very verbal and very funny. However, I sometimes feel that others just view him as an "oddity". He can read about 100 sight words, spell probably a dozen words and knows a lot about his favorite subjects. He is quite the obsessive little learner. I think it might be interesting to know what B. thinks about other autistic children, if he has given it any thought. At his age, he probably hasn't but it would be interesting if he has.

 
At 4:58 PM, Blogger Zilari said...

YAY!

Seriously, that was an awesome response. And I've felt quite similar to B upon learning that people would want to "cure" me -- it's like saying they would prefer me not existing at all, which is ridiculous. I would like to comment more but I need to go have some lunch!

 
At 10:25 PM, Blogger Lisa/Jedi said...

Thanks for the kind words, friends. I have mentioned alexander's daddy's request for his thoughts about other kids with autism to B & he has agreed to share his views :) He does know other kids with autism & is also very curious about other kids, so I'm looking forward to seeing what he has to say. Stay tuned... :)

 

Post a Comment

<< Home



hits