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Friday, August 13, 2010

Repost: Balance and Community Building

One of the things Kathleen and I believe in strongly is community building; in meeting other parents and individuals on the spectrum (and with other disabilities, difficulties, issues, call-it-what-you-will) who are looking for positive, supportive environments in which to work to make the world a more accepting, accommodating and appreciative place.

It's our three A's, if you will, with a fourth, action, tossed in, because in order to have the first three, you need the fourth (and thanks go to Squidalicious for adding the fourth to our mantra several months ago).

So, what does that mean? If you didn't know me before we started the blog directory in May, and you haven't been to Countering, you might not know that I spend a good deal of time countering what I believe to be woo, misinformation, and otherwise inaccurate or unhelpful rhetoric out and about. You could in fairness say that I have an adversarial non-relationship with the editors and many posters at Age of Autism. 

And yet, if you look at the directory, you see that there is a good representation of parents who believe their child's autism is vaccine-related. You'll see biomed parents, too. You'll see parents and autistic individuals who believe in facilitated communication, rapid prompting method, and other things I've written against.  How can that be? If I think it's woo, what are Kathleen and I doing actively directing readers to bloggers who might do chelation? Or HBOT? Now, to be fair, I don't know what all treatments are used by parents, but as long as the parents and individuals are looking for community and support and are focused on making the world a better place for our children, I'm good. Does that make sense?

You don't have to agree with Kathleen and me to be listed here. We're happy to have a wide range of bloggers here, to get to know others better, to appreciate others' perspectives.

What we won't promote, though, are sites that we believe are attempting to do harm.

Otherwise, we try to practice what we promote: 

Acceptance
Appreciation
Accommodation

Below I've posted a piece from Countering from yesterday that explains in greater detail some of my thoughts on how we find ways to work together, regardless of our beliefs about the cause of or best treatments for autism.

Still Good Work? Finding the Way to Balance and Community Building



There are so very many fractures in the online autism community that I often think it's a wonder any of us can talk to anyone else! I can't help but wonder if this is unique to this community because of, well, indelicate as it may be, the BAPpiness that is readily obvious in the parents of autistic children. 
        I own my BAPpiness, and I work very hard to not be overly literal, to try to see things from other people's points of view, to let people be when I can, even if I don't agree, as long as the point of view being forced on others isn't dangerous. And even when I post on the angry place, I take pains to note when the folks there do something right. I try to see them as the multidimensional people they are. They don't often post positive things at the angry place, and yesterday was a double heap of crap they should be ashamed of, but I'm just not going to dwell in that today.
      Instead I want to focus on folks who buy into some of the woo, but who I think also do some good work. Just two days ago, I wrote in my post, Late Night Ruminations, about some books I've been reading to review for Lisa Rudy's About.com site. I wrote, in that late night post (slightly edited for this post), about Rodney Peete's book (review can be found here): The Peetes are doing some good work. Their tremendous love for their children shines through, and Peete demonstrates on page after page that he gets the important stuff: the need to love and accept the child for who he is while you bust your ass to help that child reach his potential. That matters way more to me than the belief that their son is autistic because of vaccines. After all, Jay Gordon's their pediatrician. I enjoyed reading Peete's book and I think it's worth the time, especially if you're looking for a dad's voice. It has practical tips, too (and I can say this while declaring I am not paid for these reviews, not even in scooby snacks; I am however provided with the book -- in other words, I remain with no conflicts of interest to declare).
       Peete's book adds another dimensionality, another layer to the community, to understanding where parents are coming from. It was well worth my time. If you're looking for tips and are new to the autism world, it's worth it for you, too. It's worth it if you're just looking to understand folks better, too, if you want a bit of the larger picture.
       Despite having my attention drawn to the fact that the Peetes will be front and center at woo fest every bit as robust as Autism One, I stand by my review of the book. Reviews of books, if one is being as fair as possible, should be about the words in the book itself, as if the potential reader has no other knowledge of the author. Reviews of books should be about the books, with as little possible bleed over of preconceived notions. If I'd known that the Peetes were going to be appearing at the National Autism Association convention in November  with such, ummm, paragons as Wakefield, Olmsted, Blaxill, Bradstreet, and Soma(!), it would have colored my reading. I can't deny that. 
       It's such a frakking mess. That's not grand company to keep, is it? Ick is my overriding feeling at seeing that line up. Really, it is a massive woo fest. So, what do you do? Do you dismiss, reject, cast out, refuse to work with folks who appear at overwhelmingly woo venues? Do you look specifically at what the individual is saying, what they are after, what they're trying to sell?
      I don't know. I think one has to look beyond the surface and refuse to make snap judgments.
      So, what non-woo is the conference having?
      Well, the first day there is a session on income taxes and disability and one on autism and marriage. Doesn't sounds too woo-ey to me.
       There are sessions on sensory processing disorder and teaching nonverbal children to speak. Could be woo-ey, could not. 
       Of course, you've got Soma speaking. Woo. 
       Olmsted and Blaxill. Holy woo! 
       Bradstreet. Yup, more woo.
       Wakefield! Ding, ding, ding. Woo-winner
       Chantal Sicile-Kira. Hmmmm. Well, you be the judge. She's a big fan of Soma and buys into what AoA sells. 
       On balance, this convention is focused towards biomed parents who choose to pursue all options regardless of the research or lack thereof.
       It's not a convention I'd go to. It's not one I'd want to go to. It's one that's sufficiently steeped in the woo that I'd question those who are speaking there. It bothers me that the Peetes are keynote speakers there.
      When I read this statement on the main page for the conference, I admit I rolled my eyes: "NAA is the leading autism membership organization for breaking through the myths of autism as a mysterious and incurable disorder. Recognizing that the future of those with an autism diagnosis cannot rely on raising awareness alone, we are committed to empowering parents and caregivers with the most up-to-date resources available to enable all affected individuals to reach their full potential."
       NAA promotes actively lots of myths regarding autism, so I don't buy this declaration. But, I have to repeat, the whole conference doesn't appear to be woo. There may be valuable and reality-based information that the parents attending might not get elsewhere, and the NAA isn't excessively gouging them on the conference fee (I've seen the Michelle Garcia Winner charge a lot more for her sessions than the NAA is charging for the full conference for two people to attend). On the balance, though, it will send vulnerable parents into woo, and it will line the pockets of woo-sellers.
       So, what do the Peetes get  out of being speakers there? Are they aware of all the woo, do they actively buy into all of it, are they promoting it? Honestly, I don't know.
      That the NAA's sponsor on that conference page is a company pushing HBOT chambers? Well, geez, not good, is it?
       No, it's not good at all. So, what do you do? How do you decide?  Do you boycott the Peetes' books, their foundation out of principle? I guess everyone will make his or her own mind up on that.


       Here's how I'm going to keep on working to build community. If your focus is on improving the lives of autistic individuals, being supportive and respectful of their individuality, if your focus is on being a positive support to other families, then I'm going to work with you, be friendly with you, and agree to disagree on things like vaccine-injury as a cause of autism. I am facebook friends with people who do facilitated communication, rpm, and others who do some woo that if I think on it, well, you know. As long as you aren't pulling an AoA, pushing the woo, selling the woo, profiting on the woo, I don't have a problem.
       And I'm gonna keep checking into outfits like NAA and other nonprofits to look at what they do with their money, who their sponsors are, what information they provide to the public and how accurate it is.


      But, and this is important, I believe, I'm gonna reserve judgment on folks who support the organizations. And here's why. Most folks don't go digging through tax forms to see how organizations spend their money. Most folks look at the outer shell, see that the organization has stated goals of being helpful, and they support the organization, volunteer for it, heck, even walk for it. They're trying to help. They're trying to make a difference, and they don't deserve to be judged negatively for trying to do good, even if you aren't thrilled with the actual organization.
      So, I'm not thrilled with Autism Speaks on a lot of things. I don't like what they do with most of their money. I think it's obscene for someone to make more than half a million dollars a year from a nonprofit organization. So, I judge the organization and the person taking the bucks. I don't judge the person donating. Even if they know. Why? Because in a lot of communities, the only thing going autism-wise is the Walk. The only thing going.
      We need to work in our local communities to give folks other options, but until we've got that, we're going to have to be pragmatic and work within the structures and organizations that already exist.
       We can stick to tightly described principles and accomplish nothing, connect with no one, because no one is going to see the world in the exact same way we do. Or we can branch out and focus on big goals like building a supportive, respectful community and let some things go, or at least not be directly adversarial while we're working on common goals. And maybe by working on those common goals we'll find a way to bridge divides, respect each other, and care, care enough to find a way to talk about the differences calmly.

5 comments:

Mrs. C said...

yup. And Autism Speaks DOES have parent guides and grants and all kinds of other stuff going on. But I'm gonna keep talking about accepting my autistic children WHILE helping them with functional behaviours like speech and toileting. Hey, if your kid gets "cured" with gluten-free diet, I can think you're a bit wack but celebrate the fact that the little guy can talk and pitch the PECS. Ya know?

We are so autism-cultured in our house that our little girl learned to speak with PECS and thought she had to "flap arms" to express "happy." I kid you not... we had to have a speech therapist by weekly to help her explore the neurotypical world. lol... siigh.

You take your friends where you can find 'em. :)

Autism Mom Rising said...

I'm not sure why GFCF is considered woo by so many. The most recent study, that showed no benefit, did not include children with documented GI problems. That is a poorly designed study. The parents who report drastic benefits are often those with GI kids, such as mine. They should not have been excluded.

Believe, there is no way I would keep myself or my son in this big old pain in the rear diet, never be able to eat in a restaurant et., for years and years if it were not yielding profound reductions in brain fog.

I don't jump on every treatment, but if something, like GFCF has thousands of parents giving postive antecdotal reports and it is not going to do harm to try it for a week, such as GFCF, I''m going to try. I'm so glad I did. My son is not a bolter or a wander, unless he gets hold of gluten. If he has an infraction he gets out of the house, wonders into neighbors houses --scary stuff he never does. We have witnessed this correlation over and over that there is no doubt in our minds of connection.

Then there's me. When we put my son on the diet I decided to go on it too for a few weeks max so I wouldn't be eating his favorite foods in front of him. I was stunned by what happened. Lifelong brain fog, poor working memory, social anxiety all gone within a week. "Could it be the food", I thought? It could not be placebo because I was expecting no benefit other than my child not tantruming when I ate in front of him. So, I literally tested it twenty times...would go on those foods for a week, then go off. The results were the same every time.

I don't tell this story in any attempt to get anyone to change their mind about their own child and GFCF. My point is that if someone feels this strongly that something works for themselves or their family, such as myself with GFCF and Chantel and Soma's work with Jeremy, then maybe they are right about what they are experiencing with their own kids.

I don't ask people to change their minds about GFCF because I say it helped my kid. But when people say I believe in woo because we do this diet and I see that it has literally saved my son's life I can't help but think "they just don't get it."

Autism Mom Rising said...
This comment has been removed by the author.
KWombles said...

We did the GFCF diet for four years. Four very long years. And we saw our children make progress. We took them off the diet and saw them continue to do well.

Is it woo? Well, the whole reason the diet was advanced in the first place was the idea that the casein and gluten acted like opiates in the brain. That has been thoroughly debunked. So, if one is using the diet because of that reasoning, it clearly falls under the woo.

Are there children with gastrointestinal issues? Yes. Just like there are adults. No autism necessary. Are some of those sensitive to the protein or some other molecule in the food? Undoubtedly.

Restrictive diets based on true sensitivities are not woo.

I would have sworn, absolutely and completely, that the diet made the difference. It didn't. It looked like it did. I made an illusory correlation. We all of us do that, every single day.

I wouldn't presume to think that you've made illusory correlations. I respect parents' rights to make food choices for their children, so long as there isn't abuse and neglect involved.

The diet is a pain in the ass, that's for sure. But I know first hand that you can keep it up for years completely unnecessarily based on an illusory correlation.

KWombles said...

I should have added, everyone in the house did the diet. Man, I'd have sworn the diet helped my IBS like symptoms. It did, because it lowered the fat content. See, I had my gall bladder removed the year before we started the diet, and it turns out, I can handle wheat and dairy fine (and I had the EGD and small bowel biopsy; I do not have celiac), but if I have too much fat in the meal, I'm sick.

We do the best we can to figure out why things happen, to work out what causes things. Sometimes we hit on the right answer. Sometimes we don't. I can't speak for your situation. I wouldn't try to. And, beyond that, I won't even question the answers you've found for yourself.

But here's what else I won't do, and it's not specific to you: I won't make treatment or diet decisions based on other individuals' decision and their anecdotes. I'll do it based on the scientific evidence available and on reason.

We are forced each day to make countless decisions, and the truth is we never know when a little decision will become of major import. We are hardwired to go with our gut. Our gut is often wrong. More wrong than right. So, I'm gonna check my gut with my head, I'm gonna reason things out, I'm going to questions, and I'm gonna avoid emotionally based decisions. Especially when it involves my children and their health.

This, of course, goes far beyond issues of diet, and again, as long as the diet isn't abusive or neglectful, I have no opinion. And I don't judge parents negatively for choosing to pursue dietary changes. Sometimes it is the diet causing the gastrointestinal issues and they can be fixed easily by changing how, when, and what we eat.

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