Conventional Wisdom

Yeah, I'm a slacker. I learned more at the autism conference I recently attended than what testing goes on inside a DAN! office.

ABA is on the decline.  Several speakers with a background and education in ABA spoke of the shortcomings, including a certified and practicing behaviorist. Mainly that while it's effective in some cases, it's often pushed as a panacea and the only therapy anyone should use. One professor said that kids who had the sometimes recommended level of 40 hours a week of intensive ABA were simply overwhelmed by it.

I tend to agree. I have concerns about the true effectiveness of ABA beyond teaching a discrete behavior. Yet I, like many others, tend to hold it up as an example of an evidence based practice, because it's certainly better than admitting that there's very little evidence based practice in the education system, period. This would certainly be a better place to throw research money than disproving the vaccine-autism connection again.

The problem is that many states are starting to role out mandated autism coverage laws. What gets covered? ABA. Speech therapy, occupational therapy, and ABA. That means there are situations where a family would be told that they can get ABA or nothing. Let's hear it for teenagers that demand a reward for every action. Let's hear it for kids being taught that food is a reward. ABA in theory isn't that, but in practice it quite often is.

That said, we're in the process of hiring a behaviorist for potty training. Using the toilet seems like a behavior where rewards and positive supports would be effective. I really hope it works. He's going to kindergarten next year. And while it's not surprising that he's not potty trained, he's got enough social barriers as it is. He doesn't need a poopy diaper incident to follow him around his school career.

Another point:

The phrase "genetics loads the gun and environment pulls the trigger" is in some ways an invocation of Bettelheim. We didn't cause autism in our genetically predisposed children, though sometimes prenatal stress seems to make the difference. And that's an environment we already do our best to control.

Hamthrax Vax

So we got the kids their H1N1 vaccine. They didn't sprout extra limbs, get the flu, or develop strange neurological symptoms. I did notice my son had autism after the vax, though.  

You'd think preventing a potentially deadly illness with a treatment with low risks would be a no-brainer. But it is not. Thanks, mercury militia. The chance of having a severe allergic reaction to a vaccine is roughly the same as the chance of being struck by lightning in a given year. And yet, I had parents asking me if we noticed "any symptoms."  I saw someone else asking if it was normal to have a sore arm the next day or if it was a sign of a bad reaction.

One told me that she was foregoing vaccination, since she'd driven H1N1 away by giving her son some homeopathic remedy at a 30C dilution. For those not familiar with the dilution required - that dilution is so extreme there is no trace of the original solution. Yes, she knew it was nothing but water. She said it was an "energy" thing.  Well, I'll take knocking on wood and crossing my fingers. Just as effective, but a lot cheaper. And whenever someone in my family doesn't get sick, I'll credit my finger crossing, and when they do get sick, I'll claim I forgot to cross my fingers or didn't do it soon enough. 

Anyway, nuttiness.

Getting Inside a DAN! Head

So I went to a presentation from a DAN! doctor. I'm already a skeptic, I'll own that. And yes, I knew I was mainly there for the snark, but I'm also curious. What is the appeal?

Ok, so her background. She's a health administrator who went back to school to become a chiropractor with DAN!, "detoxification," and HBOT certifications. That's a lot of woo in a very concentrated package, but she's labeling it "integrative care." And there's not a single one of those things with any solid, evidence based science behind it, but all of those treatments do require regular, repeated visit$.

Anyway, as she was giving her presentation, she focused on tests. Tests are good. Tests sound very scientific, don't they? Turns out DAN!s love their tests. Actually, I'd gathered that from listening to other parents.

It was rather vague about why they chose particular testing. It sounded a lot like a shotgun approach - give them tons of tests and then treat anything that comes back abnormal.

On the surface that doesn't sound too bad, except for a couple of things. For one, she already questioned the test range. She seemed to think that the labs determined their normal ranges from people who submitted samples and were "mostly sick," so she seemed to think a result in a normal range wouldn't necessarily indicate a realistic normal range. I didn't get a chance to ask her how exactly she determined a normal range, since the labs apparently didn't do it. Does she guess? If so, why test?

Anyway, another problem is that when you take enough statistical samplings, you will eventually find something that isn't in the normal range. Because it's an average, and some people are going to normally and naturally fall at either end of the curve due to natural variation, lab errors, etc. That doesn't always indicate a problem. If someone isn't showing symptoms, chances are there isn't a problem. She seemed to think people wouldn't always exhibit symptoms when they came back with abnormal results, but they should still be treated. She also seemed to think some people would exhibit symptoms but have normal lab results. Those people should also be treated. So people should be treated whether or not they had symptoms and whether or not they had abnormal test results.

There were blood tests - too hight of cholesterol was a problem, as was too low. Normal results could also indicate a cholesterol problem. That seemed to be a theme. Even if the tests come back negative, you're still sick and need treatment.

Allergy tests - and beyond the blood IgE testing, (not as accurate as skin testing, but not as traumatic on the child) she liked to do IgG tests and claimed allergies could have a 72 hour reaction. Ok, first off - IgG is not in any way shape or form a valid allergy test. But now picture this. Your trusted practitioner gives you a laundry list of allergies and tells you that you could see "symptoms" up to 72 hours later. So for three days you're chasing shadows to find some vague symptom. Oh, a headache - must be an allergy. My kid must have had something he shouldn't have had. I've already got a taste of this with lactose intolerance, which does manifest itself the next day as a nasty diaper, but 72 hours later? Good golly, I'd never get any work done with the backtracking to figure out what he ate.

You somehow get past the impossible allergy and cholesterol testing? Well how about yeast. Yeah, we can find some yeast in your poop. We can find yeast in just about everyone's poop, because that's where it grows, but now you get the disgusting and OCD inducing joy of knowing just how much and what type if they can culture it.

I asked if yeast was always a problem or if she had a level at which she thought it should be treated. She gave a vague answer that some yeast would be ok in a normally functioning gut but that other people would need to have it entirely eliminated. In other words, if she deems your child to have a bad gut - and autism, according to her, involves "toxin and bacteria" in the gut - she's going to say you've got to get rid of all the yeast. Ever try to get rid of a standard, common yeast overgrowth in a young child's mouth? Let me tell ya, that stuff doesn't want to go away. Now I'm trying to picture getting rid of it entirely, and I'm thinking she's got a cash cow. If only cash cows were bulls, because we could... never mind.

Toxins, oh the toxins. She does indeedy chelate. My partner in crime asked her several questions about the safety of chelation, and she seemed to think that oral chelation was hunky dory in the hands of a qualified specialist like herself and that any safety/ethical concerns about clinical studies on chelation involved IV administration. The chemical involved is EDTA, which could be either IV or orally administered. If anyone in the know could tell me if the proposed studies involved oral or IV EDTA, I'd be much obliged.

Celiacs, celiacs, oh my.

One of the other things she finds is a lot of "non enteropathic celiac disease" My Google tells me that enteropathy is a disease of the intestines, and celiac disease is gluten sensitive enteropathy by definition. So a non enteropathic version would be an IgE reaction to wheat? Or possibly another case of "even if the test comes out negative, you're still sick."

IgA deficiency. This seemed to be the only thing she mentioned that when I Googled actually existed as a real problem. And, surprisingly enough, you can have it and be asymptomatic. Score one for the testing.

HBOT

Yes, HBOT therapy. It's the new secretin. She cited a study by BMC Pediatrics, and my thought was what's so special about HBOT? What's different that couldn't be done with a weighted vest and an O2 tank? My partner in crime asked her if there were any studies available in journals that weren't open access and then suggested several reputable journals where one might find medical research. She answered that the study met with the approval of some HBOT industry group. Isn't that a bit like Toys R Us approving a study that claims people should buy more toys?

Anyway, I'm sure I'll remember more at some other point in time. I've got some good thoughts from the conference to blog about, too.

One step forward...

Right now he's learning "Ouch! Are you Ok?" which would be better if he wasn't banging against the wall to make the ouches. I don't think he's actually injuring himself, but it's still disturbing. He went through a phase of fake sneezing and asking for bless you's, so I guess this is along the same lines. Sometimes I wish I had the magical answers of how to react in these cases. Right now I'm going with ignore it and reward any other activity.

Oh, oral fixations are back, too. I had hoped he'd outgrown it. I've been giving him cinnamon gum, which he loves. I'm hoping the strong flavor and chewing will satisfy whatever it is that is giving him the urge to chew on inappropriate things like strings, knobs, doors, shirts, etc.

My Partner in Crime

So, I was at an autism conference. As usual with most conferences, there was a mixture of great info and really bad stuff. One otherwise good presentation mentioned Thoughtful House as a great organization and then went on to stress the importance of quality research. Um...
Anyway, I had a partner in crime. Over lunch I was talking with a couple of self advocates, and I mentioned Jenny McCarthy and woo. He looked up and said, "You don't by any chance blog, do you?" Ha!  Turns out he thought I was kwombles. Not quite, but a really good guess. She's brave enough to go sans pseudonym.
By far the best of the worst session we saw was a DAN! presentation. It was in a lecture hall. We sat in the back, or as he put it "closer to heaven and further from hell."  He asked her about safety concerns with chelation and the validity of HBOT research. I asked her if she thought any detectable level of yeast was acceptable or if she treated all of it.  She didn't have fantastic answers but, that all is a blog post for another day.

More vids

And part 2:

Thanks to Orac for the tip.