Wednesday, August 24, 2005

I’M BEGINNING TO UNDERSTAND NEURODIVERSITY (AND HOPEFULLY VICE VERSA)

The comments to my prior post, “Trying to Understand Neurodiversity,” convinced me to postpone my plans to cover other subjects. This post won’t be so much about the neurodiversity movement itself as about how we get past the differences to have a truly meaningful dialog. The bad news is this is going to be a long post. I know what you’re thinking; all of Rankin’s posts are long. I mean this one is really long, so pour a cup of coffee or a glass of wine, and make yourself comfortable.

In writing my earlier post, I intended to express a willingness to explore what divides us and what unites us in a calm and productive manner. I was gratified, but not really surprised to learn that several people from the neurodiversity community shared that willingness and seized the opportunity to have cordial discussions.

One new friend, jypsy, noted my use of the term “anti-thimerosal/biomedical advocates” to describe people who share my views on what triggered my son’s symptoms, and what seems to be working. My awkward choice of words reflected my struggle to find some shorthand means of describing the focus that many of us have in discussing ASD issues. That struggle is almost a metaphor for the entire problem we’ve been discussing. We’ve all become victims of semantics.

The inability to find the right words lies at the heart of the separation between the neurodiversity and biomedical communities. Parents in my position use words like “disease” and “cure” because the disease model is readily understandable to us. Yet it may not be adequate to really explain what is going on with our kids. Misunderstanding occurs because our interpretation of any word is naturally colored by our own experience and perspective.

When I say “cure,” or “reversal,” I’m really referring to alleviating adverse biochemical and neurological processes that are interfering with an individual’s ability to fully utilize all of the natural gifts that individual possesses. Someone else may see the word “cure” used and worry that someone is attempting to remove their own gifts http://www.blogger.com/img/gl.link.gifaltogether because the use of those gifts may not fit in with the “norms” of society. Still another person may cringe at the thought of that “cure” being taken one step further into the realm of genetic engineering.

The views I have regarding my son’s condition are generally the same views expressed by organizations I respect like Safe Minds, No Mercury, and Generation Rescue. As I’ve said before, I call my son’s condition ASD because that’s what the last line of the evaluation said. And yes, I think his condition, or at least the problematic part of his condition, was triggered by exposure to environmental toxins, including thimerosal. Yet I wonder if we aren’t all being myopic about ASD, its causes, the means of “curing,” and even the necessity of “curing.”

Brett Miller’s blog, “29 Marbles,” often explores the dynamic many of us struggle with: how to balance the need for acceptance of our children with the desire to improve our children’s lives. In one of his recent posts, Brett reviews a newspaper account of recent genetic studies. One autism researcher is quoted in the article as saying that the “measure of autism is usually the inability to cope in the real world,” and autism is “only a disorder if it causes stress or interferes with function." The experience most common to members of the biomedical community relates to ASD severe enough to cause dysfunction, and it’s that dysfunction we’re trying to cure.

Robin Nemeth’s comment to my earlier post demonstrates that there can be a pretty wide divergence in where an individual fits on the spectrum. The comments by Lili present anecdotal evidence of a family in which ASD is pervasive without any identifiable environmental insult. It’s entirely possible that many high-functioning folks did not receive the same type of damage from vaccines that some of our kids did. And I can’t completely discount the possibility that just maybe our children would have been somewhere on the spectrum, albeit at a higher functioning level, without the thimerosal trigger. Given the current state of the science, I can’t say anything with certainty except that my son’s regression after vaccines, and his improvement after biomedical intervention fit into the vaccine-damage hypothesis.

Because our experience is so tied up in what we have witnessed in our children, we naturally think that everyone on the spectrum must have been “damaged” in the same way. Forgive my use of the word, “damage,” but that’s the point. We see damage. Could it be a comorbid condition to ASD caused by environmental insults to which persons on the spectrum may be particularly susceptible? Sure, that’s a possibility, but we call our children’s condition -- including all of the manifestations -- ASD because that’s the label the “experts” put on our children.

Context is everything. The more I read of her writing, the more I am coming to respect and admire Kathleen Seidel. She speaks eloquently on behalf of people who should be considered valuable contributors to our society and culture. We disagree on whether there is an epidemic, on whether thimerosal can act as a trigger in the development of autism, and whether biomedical responses are appropriate. But I also believe that her real problem with “us” is with our semantics.

Some of Ms. Seidel’s postings are difficult for me to read. Those writings detail comments and actions by some of us in the biomedical movement that Kathleen finds offensive. Some of the complaints involve people in the anti-thimerosal and biomedical movements whom I admire. I understand Kathleen’s points, but I would plead with her to try and consider the context, and perhaps forgive any offense so we can all move on.

Part of that context is the frustration anti-thimerosal activists and biomedical parents have known all too well in these past few years. Despite an ongoing scientific process that we believe supports our opinions, we have been constantly derided and called kooks, conspiracy nuts, greedy plaintiffs, and uncaring parents. We eagerly anticipated the IOM examination of the issue, and were bitterly disappointed when the panel chose to discard the emerging evidence in favor of epidemiological reports we believe are fundamentally flawed. (I really don’t want to discuss epidemiology’s limitations and the IOM report in this particular post, but I mention our viewpoint only to help explain context.) We constantly got our hopes up when we found out that a national media outlet would cover our issue, only to get disgusted at a story that paints a ridiculous picture of a monolithic scientific community patiently explaining to a group of misguided and misinformed mothers that they just don’t understand science. (The occasions on which the national media has presented a balanced picture have been rare indeed.)

All of that frustration tends to make us a little defensive. And being human beings, we sometimes subscribe to the theory that the best defense is sometimes a good offense.

I am sometimes confronted with comments (at least one on this blog, and several at The Huffington Post where I sometimes leave comments) that my son’s ASD can’t possibly be related to thimerosal, and that my wife and I are, at worst, jeopardizing his health or, at best, encouraging quackery by following a biomedical path. At first, I was offended at the harsh tone of some of those comments, but I soon realized two things. First, I had placed my name and comments in a public place on the internet, thus inviting opposing views. Second, and more importantly, the people giving me the “benefit of their views” probably believed in what they were saying every bit as much as I believed the opposite. Given that, they not only had the right to say what they did, but they probably felt obliged to write with missionary zeal. The same can be said for most comments suggesting “cures” to high-functioning adults (or parents who share the neurodiverse viewpoint) who are quite able to make up their own minds.

One must also consider where a heated exchange takes place. Blog sites like this one or The Huffington Post are essentially electronic op-ed pages. Indeed, my motivation for starting this site was to create a place where I could not only set the agenda, but also foster the free exchange of ideas with people who may disagree. Internet discussion boards, on the other hand, serve a very different purpose.

I do not personally monitor or participate in the Evidence of Harm board, but my wife is a member of that group as well as a few others. She uses the groups to find out what is working and not working for others, as well as to hear the latest news on the issue that affects our family life the most. Although such groups generally have an “open” membership, the nature of the boards is such that they function more as a closed support group than an open debate. In that environment, thoughts are sometimes blurted out without a whole lot of thought given to carefully expressing one’s true intent. Then, when an element of dissent or debate is added, the natural result is often harsh rhetoric.

I might add that I have not researched the complete context in which the exchanges between Ms. Seidel and members of the biomedical community occurred, and so I cannot comment on whether the individual posters may have felt justified in saying what they did. It is also clear that Ms. Seidel often gave as good as she got, a factor that sometimes makes it more difficult for a cessation of hostilities.

From Kathleen’s standpoint, all that may not excuse all of the harsh comments she describes in some of her writings, but I think the comments become more forgivable. What seems more problematic are suggestions that were apparently made that one person or another should be inundated with emails or phone calls. Even if not intended to be an actual suggestion, there is always someone that might think it a good idea. Following through on such an idea crosses a pretty clear line into the realm of harassment. Besides subjecting the harasser to legal difficulties, the only thing accomplished is to tarnish the cause that some of us hold pretty dear.

My point in all this (geeze Wade, you sure took a long time to get to the point) is that we can have a pretty rational discussion about the issues that divide us and unite us if we can get past the urge to win debate points. The comments to the prior post prove that we really can get along. So let’s shelve the harsh rhetoric, stop worrying about any perceived insults of the past, and start learning from each other. But considering our disagreement on so many core issues, it seems fair to ask what we can work together toward? Kathleen Seidel can answer that one:

I am convinced that society must work to discourage the proliferation of dehumanizing characterizations of autism and autistic people. We have got to continue to work to develop our understanding of autism, to work to improve the quality of life for all autistic citizens from childhood through adulthood, to continue to identify means for autistic people to gain the skills and knowledge they need to get along in the world, and to learn to interact in a respectful way.


It’s pretty hard to argue with that.

**************************************************************************

Eventually I plan to get back to more substantive topics, but I believe I’ll take a little time in the near future to talk in general terms about “respect,” because that’s really what all of this is about. You can’t be respected if you don’t show a little respect. And you can’t change the world if you don’t have respect.

4 Comments:

Anonymous No more chelation for autism said...

Mr Rankin,

You are obviously a nice man who is trying to be reasonable. But what you see as "damage" is not damage by thimerosal.

You need to get a real doctor to do real hospital or doctors office lab tests, not mail order lab tests. The mail order labs are going to get exposed as fraudulent, I know they are. Your son is probably not high in mercury at all but you are being tricked into thinking that he is. All you have to do is talk to a legitimate doctor and ask him to do a standard test.

Only quacks "provoke" before testing for heavy metals. Doesn't that tell you something?

8/25/05, 2:16 AM  
Blogger Lili said...

I wanted to point out that, although it's true that my family's story is anecdotal evidence of autism being genetic, your assumption that all of my autistic family members are "high functioning" is incorrect. I am quite high functioning- though I am not capable of living independently- but my daughter would be "low functioning" by anyone's assessment, even though she is not "mentally retarded", and the same is true of my nephew. (I hate using all of the terms I've put in quotes, and find them offensive, which is why they are in quotes).

Before my daughter was diagnosed with autism, it was thought that she was possibly brain damaged, because her behaviors are so severe and obvious, and have been from birth. So "high functioning" is not a label that could possibly be assigned to her.

I agree with the previous commenter who says that you need to have a mainstream doctor do an established test for mercury- especially if you are considering chelation. I'm sure you already heard the story of the 5-year-old in the States who died during a chelation treatment (if you haven;t, I'll be happy to provide links). To me, stories like that say that parents would rather risk their children's lives then learn to accept their autism, which is incredibly scary. I'm not accusing you personally of having that view, of course.

I also want to apologize if I come across as harsh- since I'm an Aspie, I tend to come across as being very blunt, when I am only trying my best to communicate my point clearly. I have no ill will towards you and hope we can continue to learn from each other.

8/25/05, 1:35 PM  
Blogger Typhona said...

I too understand where you are comming from. I have never had an official diagnosis, ok there was Central Auditory Processing Disorder, but I think at the very least probably ADD/ADHD. While I agree that there is a genetic relation to Autism, I also believe that there could also be environmental inffluences as well. If we take the stance that Autism is genetic and only genetic I think that this is a rather closed view. On the other hand to say that all autistics are affected by environmental influences is just as close minded.

If we take a look at the genetic side could we not plausably think that if there is a genetic predisposition for Autism, and there are varrying levels of Autism, could there not be a genetically predisposition that would not come to fruition except for the toxicity of the thimerasol?

Knowing what we know about toxic levels of mercury in our food supply and bodies of water. And given the CDC and FDA both have warnings for pregnant mothers and small children to limit their intake of fish. The levels of thimerasol comletely exceed these limits. Also knowing that autism can be caused by severe injury to the brain(if not autism then at the very least identical indications). I agree that we do not need to continue the argument within the community. If the biomedical is working for your child (and your not trying to make them NT, just improve their coping skills) I say go for it. On the other hand there are those people that want nothing short of having a 'normal child'. It is with this group we should all focus our efforts. If we can educate them to understand that there is nothing wrong with their child, he/she is just not typical(this is with high and low function). This is where the battle belongs with these parents, medical personel, and politicians.

I am soon to be the step-father of a little girl that is HF. We witnessed the regression after she had her 5 yr old booster shots. I was not present for her 18 month shot but was told that soon after her shots she started showing signs. By the time she was 5 she was using one word communications for the most part, after the booster she regressed imediately. We were so happy that she wanted to communicate as badly as she did and today (3 yrs later) she still has a slight verbal delay and is not quite as mature as her peers at school.

We looked at teh GFCF diet for startes, however her diet was already rather limited. So we were rather limited as to what to get for her to eat, turns out that would have been almost NOTHING. She would rather not eat than eat something she doesnt like. Her menu has evolved some but almost as soon as she adds something she also drops something that she previously ate all the time. So what we boiled it down to was milk and dairy products. Trying to find gluten and casien free food is a bit out of reach for s. But she does drink soy milk instead of real milk we have tried the soy ice cream but she didnt like it. We are thinking of trying the rice ice cream. She does still get yogurt and it doesnt seem to affect her. But when we took her off of milk there was an imidiate result.

So as I have said before we should not fight amongst ourselves as to whether or not it is totally genetic or if it is from enviornmental reasons. We need to take to the parents that look at their children as broken dirty little secrets and try to get thier heads out the sand. They seem to be the most damming thing to ever happen to their children. I was a child that grew up with 'try to be more normal', 'whats wrong with you', 'why cant you be more like the other kids'. I even saw therapists, had special tutors, and saw specialists. None of them ever could figure out why I was different, and these were the 'mainstream' type doctors. They are just as infalable as any other human being. just my 2 cents.

8/26/05, 11:01 AM  
Anonymous Clay said...

Gosh Wade,

I've been checking on your blog every day, but not finding anything new since the last time I wrote. It seems I had the URL to "Trying to Understand Neurodiversity", but only that segment. Was just looking at Kev's blog, (which says some very nice things about you, and I totally agree), and then clicked on your name next to a quote of yours.

Good, you're still blogging, I was worried about you. Me, I just got kicked off Lenny's List, probably deleted from the archives too, though I was very nice. You're right, the whole problem is semantics, and it isn't helped when some people try to coin new words or create new usages for words that already exist.

9/15/05, 11:57 PM  

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