Sunday, February 14, 2010

Alternative Assignment

There's a joke I've heard a number of times on the skeptic blogs that I frequent:

Q: What do you call alternative medicine that's been proven to work?

A: Medicine!

We've been talking a lot on my LEND seminar about evidence-based practices. There's a hierarchy of evidence types, from the randomized controlled trials at the strong end to anecdotal reports at the waaaay weak end.

For good or ill, however, people don't automatically tend to weigh evidence in this way. Human beings are story-tellers and story-experiencers. The weakest evidence in the chain, the personal testimony, is often what pulls the deep visceral reaction for us. I had just such a conversation at a party (of all places) yesterday afternoon, with a paramedic who is hesitant to have a back surgery that is statistically quite likely to give him good relief. But, he knows too many people who have had bad experiences with similar surgeries. I shared with him in return my refusal to have a "routine" amniocentesis with Joy's pregnancy at the age of 36, primarily because I had a former colleague who lost a healthy 20-week pregnancy to a routine amnio gone awry.

Now, those are both examples of refusing medically-recommended procedures. Things get just as tricky or more so on the other side, when medicine doesn't have much to recommend and alternatives step into the gap. As I said a week ago in my post on the "cure question":

When people (parents) are desperate for a cure, and science doesn't have it, the door opens wide for uncontrolled experimentation. And quackery, alas.

I expanded further in a comment on a post from Barbara at Therextras, as we continue our bloggy cross-pollination:

I'm thinking now about the whole issue of parents -- like me -- touting "what worked for my child." All of us have to make those judgments, to decide whether a treatment is working, and if it's worth it to continue something we've started. And then, very secondarily, to what extent we want to recommend it to others. It does feel good to share good news, and to offer the positive benefit of experience. I love blogging about what works.

And yet, and yet... every one of us is mightily prone to seeing what we want to see. That's just human nature: we've made a certain investment in whatever treatment/intervention, and the whole point is that we want our kids to do better. And hence, alas, parent reports of "X worked for my child" don't get to count as scientific evidence. Maybe X did work, but maybe something else was at work too, or instead (passage of time? Some other factor?) or maybe an impartial observer wouldn't be able to document what I as a parent am perceiving?

Alternative treatments thrive on the personal narrative. They offer testimonies of hope. But they don't get to enter the realm of "medicine" without a certain level of research base, and that research has to support the intervention!

On Friday my LEND class had the opportunity to sink our teeth into some alternative treatments, in the form of presentations by fellow students. We were each assigned a non-standard intervention on which to speak for 10 minutes. Here was the first half of the lineup (the second half will be presented on the 26th):
  • Full inclusion
  • Sensory integration therapy
  • Facilitated communication
  • Wilbarger brushing protocol
  • Chelation
  • Secretin

Interesting list, huh?

Here are the objectives for the assignment:
  • Become familiar with the claims of several non-standard interventions commonly used with children who have neurodevelopmental disabilities.
  • Learn what questions to ask in order to evaluate these claims.

The presentations are to address:
  • What exactly is the claim made by this intervention? For whom is it intended?
  • Is the claim consistent with current knowledge, i.e., does the rationale for its claimed effectiveness make sense in terms of already existing scientific knowledge?
  • What is the evidence base for this intervention?
    • Have results been described in peer-reviewed journals, or only the lay press?
    • Are there any known risks for using this therapy?
    • Have alternative hypotheses been considered?
    • Are there position statements regarding this therapy, issued by any professional organizations? Does your professional organization have a position statement on it?

  • Are there conflicts of interest for those evaluating the claims?
  • Are personal attacks being made against those who question the claims?
  • How widely used is the intervention?
  • How much does it cost in time, energy, and money, for families?
  • What is the attraction for families to try this therapy?

One of the presentations included a factoid claiming that up to 74% of families try alternative options for treating children with autism. Given how few truly evidence-based options there are, I'm actually surprised the number isn't higher -- I suppose it also depends on what you class as "alternative." In just the list above, we've done two: brushing and sensory integration. The brushing was a total bust... and I learned from the presentation that it really wasn't indicated for Joy in the first place, since it's aimed at sensory defensiveness and Joy is a sensory seeker, pretty much across the board. The sensory integration, however, is an ongoing part of our journey.

Anyway. Just as there are heirarchies in evidence quality, I'd say there's a hierarchy in the respectability of the interventions we saw presented. Sensory integration has wide acceptance in the profession of occupational therapy, and makes a certain amount of scientific sense, though the evidence base is not particularly strong (yet?). It was a interesting exercise for the two students, both OTs in training, who got assigned that topic, to examine it in terms of an "alternative" intervention.

The Wilbarger brushing protocol, which aims to alleviate sensory defensiveness, involves a pattern of stroking the person's body with a surgical brush every two hours, done with just the right pressure and just the right pattern. The OT student who presented on the brushing protocol has one of the protocol's inventors as a professor! Brushing relies on sensory integration for a theoretical background, but is a little further down the "makes sense" chain and is unfortunately susceptible to the allegation that if it didn't work, the practitioner (which ends up being parents) must not have done it right.

On the even-less-well-supported end were secretin, chelation, and facilitated communication (FC). FC is a method whereby a person who is unable to communicate verbally or type by themselves is assisted by a facilitator who helps support their hand as they point or type. The speech therapists presenting on FC were in the opposite boat as the OTs presenting on sensory integration: their profession is highly critical of FC and has formal statements cautioning about its use. There are multiple studies discrediting FC, apparently quite an easy discredit to achieve: you show an object to the person but not to the facilitator, and then see if the person can "tell" you what they saw. In far too many cases, they simply can't. Unless the facilitator sees it too.

Meanwhile, secretin (a hormone involved in digestion) was at one point claimed to ameliorate autism in up to 80% of patients. There are now upwards of 30 studies failing to show any benefits, though die-hard secretin proponents have criticisms of every such study.

Chelation is not just more weakly supported by science as an autism treatment, it has been implicated in at least one treatment death as well. It works for its intended purpose, which involves pulling heavy metals out of the body in cases of heavy metal poisoning. The hypothesis behind its use for autism is that autism is a heavy-metal poisoning issue, with the culprit being the ethyl-mercury found in thimerosal, formerly used as a preservative in childhood vaccines. However, this hypothesis has been powerfully discredited both by research and by the fact that thimerosal was removed from almost all childhood vaccines beginning in the early 2000s -- and the autism rate has not dropped. (Again, the proponents do not accept this discrediting, often viewing it through conspiracy-theory lenses.)

The full-inclusion topic was a little surprising to me, and I'm still not entirely clear on it. If I understood correctly, the "alternative" version of full inclusion argues that if you have properly-trained teachers, children with special needs ought to be able to be productively mainstreamed without a separate curriculum or extra teachers. Since I didn't get a clearer picture than that, I'm not going to expound further.

I was struck by the tone of the presentations, very matter-of-fact and respectful (and not in the sense of one of my favorite skeptical blogs, Respectful Insolence!) All of the presenters so far were practitioners in training, no family members yet. And practitioners have to walk the tightrope of not pushing families away, not alienating people who might otherwise hide the fact that they're trying alternatives -- which leaves the practitioner without important knowledge as they try to offer the family the best from their own fields.

I'm still finding that balance for myself. I guess my tendency is to be a little more Judge-y McJudgerson... it's frustrating to see people being (as I see it) taken in and wasting time & money & energy on things that may range from futile to dangerous, and then (sometimes) giving other families pressure and grief for choosing NOT to try.

I guess I'll have to make some choices, bloggy and otherwise. Next choice will be how to comport myself when I present on the 26th, with two other trainees, on the gluten-free / casein-free (GFCF) diet for autism. Also up that day: hippotherapy, hyperbaric oxygen therapy, and more! Stay tuned.


pixiemama said...

Well, I think (and yes, it's just an "I think") that kids with sensory issues need to have their needs met in some way to help keep them grounded. When Foster and Reilly don't get enough physical activity and hard work, they have a lot more trouble modulating their behavior.

Other things are so anecdotal. I think that if the treatment is deemed safe (lots of supplements are safe when dosed properly) and parents believe their children are coping better/showing better eye contact, etc, etc., then it's kind of a no-harm no-foul situation.

There's much to be said for perceived improvement.

Hope you are well.

Trish said...

Very interesting stuff. We had the same issue with brushing, and my son is hyposensitive and sensory seeking as well.

I don't know which death they were referring to in the chelation presentation, but I know the one a few years ago in PA was due to the doctor using the wrong drug.

I wouldn't see full inclusion as a medical topic. It's not a treatment method or a specific curriculum. That's an interesting choice.

I think one thing people lose sight of is that the lack of studies does not mean something doesn't work; it just means it hasn't been studied.

Niksmom said...

If you'd like some input from a parent who follows a GFCF diet for an autistic child...I'd be happy to share my thoughts/observations. Hint: I don't think it has ANYTHING to do with autism. ;-)

Anonymous said...

This is all so fascinating to me and I'm so glad you are sharing you're learnings.

I'm going to try to write a blog post soon on my thoughts about what dietary intervention has done for Charlotte.

Mimzy said...

Yes thanks for sharing! Facilitated Communication is quite the interesting topic. I've heard of a resurgence where people provide resistance only (as if you wrapped a rubber band around the person's elbow and pull back only) so the person can more easily type. But when I saw it in action once I was not impressed, though I think the theory there is sound at least - and if done well, it might help??? I'll wait on the research!

jess wilson said...

here's what it comes down to for me ..

'and then (sometimes) giving other families pressure and grief for choosing NOT to try.'

that's where i have trouble. i'm all for people making their own (hopefully) well researched and careful decisions for their own families. it's the pressure to bring others along that i simply can't abide.

can't wait to hear where this takes you. fascinating stuff!

JoyMama said...

Thanks for the comments, everybody. This was a very sprawling post... every last one of the alternatives could have easily merited a post on their own, and of course ten-minute presentations by trainees aren't going to give me all the ins and outs of each! The conversation can get very specific very quickly -- Trish, you give a great example about the details about the death associated with chelation. I think you're right, they were probably referring to the case in Pennsylvania, and a lot of bloggy "ink" has been spilled over whether the difference between disodium EDTA and calcium-disodium EDTA lets one say the death was or was not really about chelation per se...

Anyway. I'm looking forward to the next round of talks, including my own! (I think. Heh.)

Elizabeth Channel said...

Fascinating as always. We have had the same exact result, or lack thereof, with the brushing protocol given our sweet sensory-seeker, although I will say it calms him down so there's a plus--no harm done there!

I can't wait to see what you find with GF/CF! As a parent of a child who has been on that diet for two years, I can honestly say it is hard to remember what he was like two years ago and how just plain old development coupled with OT and other therapies have impacted him. It's so hard to isolate what actually helps sometimes.

And I agree with Pixiemama that the heavywork and understanding their own need for that is key.

I can't wait to hear what you learn!

Anonymous said...

I wish I was more clear on the full inclusion topic that I presented on as well!! It is a different type of approach than some of the many dimensions that are social rather than more physiological...hard to research adequately.

In a perfect world, I argue the agenda should be toward full inclusion, but not by concluding that special education is wasteful or inadequate. I'll get off my social worker soap box now

Andrea said...

yes, our kids are all so different--the causes and solutions to their behaviors will range and we keep trying it all in the name of hope and love. it's fitting this was your Valentine's day post! and i lam going to repost the opening humor...