Cross-Post at the Directory and the Petition Divide

I'd encourage readers following the petition divide to go to the directory to read my post there,
Diversity in the Autism Community: Wandering Behavior.  I'd also, if you've followed ASAN's petition, encourage you to read the Autism Science Foundation's post.

If you've any curiosity after that, I'd go read both petitions side by side, examining the rhetoric. Rhetoric does matter. How we shape our arguments, the use of fallacious appeals and inflammatory rhetoric does matter. Look at the evidence behind the claims and be cautious when there is no evidence offered. I teach my students that the evidence is what matters. Not the person making the claim, not the claim itself, but the evidence for that claim. I wrote two long posts this week looking at evidence and rhetoric. 

I've spent two years engaged in the vaccine debate. Trust me that I'm paying absolutely no compliment when I suggest that a recent petition uses the same kind of rhetoric that the anti-vaccine camp uses. We should, if we are evidence-based, want to avoid engaging in fallacious arguments (even though we often fail). We should want sufficient evidence to back the claims.

Despite my support for logically argued, evidence-based positions, it's clear that inflammatory rhetoric is much more effective at getting people to act; it's easy when your emotions guide you; all you have to do is follow. While I understand how people can and do get swayed by emotional appeals, if there's no evidence to back those appeals, then I'm not impressed, and I hope that I will not be swayed.

Knee-jerk reactions feel good; you've acted. You feel decisive. You get your adrenalin rush. Yay you.

I'd rather settle for the lower glow of knowing I acted from reason and evidence. Yes, it's a bit of the turtle versus the hare kinda thing. I can live well with that.

Full Disclosure:

I am facebook friends with both Ari Ne'eman and Alison Singer, both public members of the IACC, and each behind a side in the Wandering Code Debate. I have, in the past, communicated privately through email with each. I consider them to both be allies.

I have signed neither petition. I try to not be knee-jerk about anything I do.*

I did, however, email D. Pickett, as the ASF asked. My email was as follows:
My hope is that you will at least have more balanced, reasonable emails than irrational ones. Please consider the wandering code as relating to autistic children, so that we can begin to get a reasonable assessment of how big a problem this is.
I covered the ASAN petition and followed up at Science 2.0: http://www.science20.com/countering_tackling_woo_and_science_asds/deconstructing_petitions_making_evidencebased_decisions_not_kneejerk_ones-77152http://www.science20.com/countering_tackling_woo_and_science_asds/asan_and_iacc_icd9cm_codes_and_wandering_call_reasoned_action-77228
Thank you,Kim Wombles

For individuals who choose to email or sign the petition, let me suggest you consider the role of rhetoric in getting one's concern heard, and also that you consider how you would react when barraged with hundreds of emails, especially ones that are hostile and not evidence-based. Words do matter.

*But I am fallible and do engage in this as well. When I do, I try to fix it. I don't always succeed.


farmwifetwo said...

Your other link to the Autism Science Foundation goes through facebook. Unless it's found elsewhere I can't open it. I neither have, nor will have, a facebook account.

Kim Wombles said...


Thanks; I fixed the link in the post, too.

farmwifetwo said...

Thanks. Read it.

Nice to read another informative post on the subject.

Anonymous said...

I guess my question would be if we are going to have a diagnostic code for wandering, then what is supposed to be the treatment for it? Saying it is a disorder implies there is something to be done to help the person stop the wandering behavior (other than physically keeping them from doing it), doesn't it?

It is hard for me to know whether this is a good thing or not, and I think like many issues, it can be used for good or bad depending on the person who has the power and how they wield their authority.

Kim Wombles said...

I think it's hard for anyone not familiar with the codes to understand the significance. I don't pretend any expertise, here, but maybe this will help some:

"ICD-##-CM codes are used for diagnosis purposes. CM means "clinical modification." It is used by hospitals and other facilities to describe any health challenges a patient has, from his diagnosis to symptoms to outcomes from treatment, to causes of death. As we move more and more into electronic medical records, these codes will be used even further by physicians and other medical professionals."


It isn't like all of a sudden, people would be diagnosed with Wandering Disorder, nor is it likely that the horrible things some folks are insisting would happen actually would. There's absolutely no plausible mechanism by which hundreds of thousands of autistic individuals would be immediately coded with wandering behavior.

Individuals withe dementia who also wander are already coded with this same code; the question would be what data is there to indicate that a wandering code leads to increased restraint.

And if even the CDC did add the code, it would not be added until April 2012 at the soonest. It's unlikely that they'd leap right on this and act immediately to allow the April 2012 implementation date.

I think we have a lot of lay people going off half-cocked based on limited or inaccurate information and extrapolating out their worst fears.

If a diagnostic code would allow for insurance reimbursement for alarms on doors and tracking devices, this could be helpful to many families already squeezed financially.

Anonymous said...

Thanks for your response. In looking at the DSM info on Alzheimer's, it doesn't look bad at all. I can see that it would be important for someone working with my MIL to know that her Alzheimer's symptoms have started to include wandering within the last month, which previously was not an issue at all. But no one is saying to restrain her, just not to leave her unattended.