One Step Forward, Two Steps Back?

Just a few quick thoughts while I continue to piece together future posts.  In comments to Sarah Schneider’s piece republished here last week (Allen Frances gave us the Asperger’s “epidemic” — just like Al Gore gave us the Internet), she laid out one of the dilemmas faced by parents of autistic children with admirable clarity:

But the model used for allocating medical, educational, and social services is binary. You’re “in” or you’re “out.” And I am constantly aware that every time I advocate for my son by arguing that he belongs “in,” without challenging the model itself, I validate it.

The gatekeepers have a big investment in the “in or out” model, because nobody has come up with a workable alternative for allocating services yet. In an ideal world, services would be tailored to the individual, and we would cut out the middlemen in charge of determining eligibility. Unfortunately, we’re not there yet.

I completely agree that everybody benefits if we can shift the public understanding of autism closer to the first model. But that battle may not be won in my lifetime, and in the mean time I have to advocate for my son in the here and now.

Clarity enough in fact that the general outline of that dilemma started resonating elsewhere for me … where else had we seen this resignation to the reality of there being only two choices?

Electoral politics under a two-party system, that’s where.

How many times have we voted for the lesser of two evils, and walked away feeling like there has to be a better way?

Sarah’s comment got me thinking first about how I advocate here for an expansive, inclusive model of autism with a greatly reduced emphasis on diagnosis and pathology – no either/or for me, thank you very much.  And yet when my stepdaughter was ready to enter her senior year of high school, with the prospect of needing a firmer basis from which to negotiate accommodations at college, we bit our lips and trundled her in for an updated, more definitive diagnosis.

Second, it got me thinking about how in the voting booth I’ve tended to opt for the major party candidates even when my sympathies lie elsewhere, telling myself it was the safe, pragmatic, responsible thing to do.  And yes, no matter how far I lower my expectations, like most everyone else I have experienced “voter’s remorse.”

So I’m writing to say it strikes me that these two dilemmas have much in common, and that perhaps their resolutions do as well.

From the elections side, the two potential game-changers of which I’m aware are instant-runoff voting (already working its way up from the county level), and the Interactive Voter Choice System (IVCS) described by Tom Atlee and others here, here, and here.  I’ve not had time to look into it, but I wonder what analogs there might be for autistics.

The other thing I wonder about is what analogs there may be between constantly consenting to choose between the lesser of two evils in the polling booths, and constantly consenting to opt in to a binary system for the allocation of medical, educational, and social services.  In my lifetime – at least from my perspective – we’ve seen the two-party system in America used to inexorably ratchet the Overton window so far to the right that Richard Nixon has begun to look like a liberal.  All this even or especially when the supposed “left” has supposedly been “in power.”

I don’t necessarily see evidence that “neurodiversity” is engaged in that deceptive dance of one step forward and two back, but the same driving dynamics of fear and blackmail – support X, however unpalatable, or even worse things may happen to our children – are amply available to both politics and parenting.  And just the fact that such a “shift” along any spectrum could occur in such a way – during a time when voters on the left were “winning” by casting the safe, pragmatic, responsible vote – seems like it ought to be instructive for those of us with an interest in the situations of autistics in a society that favors binary models.

Overall of course the two-party electoral system and the gatekeepers’ “in or out” model for the allocation of services are just two more examples of an orientation to The One as opposed to The Many, which seems to be the more congenial orientation to the autistic cohort.  More on this as the year unfolds …

[image:  mod as hell]

on 01/14/11 in featured, Politics | 3 Comments | Read More

Comments (3)


  1. Gwen McKay says:

    By today’s standards Richard Nixon was a socialist, and I mean that seriously. Just imagine what would happen if any president today tried to impose wage and price controls as Nixon did. Heck, some people have been calling Obama a socialist for funding a few road construction projects under much worse economic circumstances. It boggles the mind.

    And you’re right, binary models are not healthy for autistic people and other living things…

  2. Sarah says:

    Interesting thoughts.

    Instant Runoff Voting introduces additional choices in political elections, so that voters can choose between, say, five candidates rather than just two. I think the analogy with autism diagnosis would be the additional diagnoses [or informal descriptors] added under the ASD umbrella in the last few decades — we can now choose between “classic” autism, Asperger’s, PDD-NOS, SPD, “developmental language disorder,” Broad Autism Phenotype, etc. Any one of these diagnoses or labels may trigger eligibility for services, but you still need a diagnosis one way or another.

    The different diagnoses represent frets along the spectrum, or maybe dots in a scatter graph. We choose the fret or dot that comes closest to describing our experience, but it’s still a very imperfect one-dimensional model that doesn’t come close to capturing the multiple axes of variation in human neurology. In the same way, a choice between five political candidates is better than two, but it is still quite possible that none of the five will align with my political views. However, IRV offers me a way to choose one of the five that comes closer than the top two.

    In the world of special education services, where there is a limited pot of money to be allocated and we have to determine who qualifies, I think a “sliding scale” would be more fair than a simple in-or-out model. But then we have to decides who defines the scale, who decides which services correspond with which steps, and who decides where each individual belongs on the scale. It adds a lot more bureaucracy, which sucks money away from the services themselves.

    No model that includes a finite set of choices can perfectly represent the reality of infinite variation. More choices are better than fewer choices, but we still lose all the nuance in between.

  3. Mark Stairwalt says:

    Thanks Sarah. Andrew Lehman has written about the perils of mistaking the map for the territory in terms of consciousness and evolutionary theory … (among other places)

    … which seems broadly similar to the difficulties you describe with modeling autism.

    Gwen, there was Nixon’s strong environmental record as well. The Koch brothers would’ve had none of that. Plus, hey, Saturday Night Massacres now come court-approved:

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