passionless Droning about autism

Posts Tagged ‘We Are Double Doomed

Hello friends –

There used to be a poker room about twenty miles from my home; it sat above a run down greyhound racing track and smelled like an old shoe on the best day.  But they had poker.   They hosted an accumulating jackpot hand, usually worth a couple of thousand dollars, sometimes quite a lot more, which you could win if you got a royal flush in the current suit; i.e., if the suit was hearts, and you wound up with 10-J-Q-K-A hearts, you’d win the Jackpot.  This could lead to some unusual cost/reward analysis scenarios.

Let’s say you sit down to play and buy in for a hundred dollars.  Then, three hands later, you look at your two hole cards and you have 10-J hearts.  Not really a great hand, but if the board winds up showing Q-K-A hearts somewhere in the next five cards, you win fifteen thousand dollars (or whatever the Jackpot had accumulated to).   Almost everyone folds, but before you get a chance to see the next three cards for the two measly dollars you put up as a blind, an aggressive, serial over-better to your right raises to fifteen dollars.  You are in a tough spot, you know the guy bets like crazy anytime he thinks he can steal a pot, but you still are losing to anyone with a queen.   If you had 10-J spades, or clubs, or mixed, or (nearly) whatever else, this is easy; you dump your shitty cards.  But with your two royal heart cards, you *could* win the jackpot; your odds still totally suck, even if you were getting paid off a thousand to one you still didn’t have the ‘right’ odds to make the call, but if you inhabit a place where losing fifteen dollars won’t kill you, but winning fifteen thousand would definitely be a game changer, the magnitude of the potential winnings must be part of your decision making process.

I called the raise a few times, but never hit the jackpot.  Or even came close.

I keep coming back to the idea of incorporating the scale of potential outcomes when I think about the non event of the hilarious prevalence numbers that came out a while, one in fifty with ‘autism’.  Nobody outside of Journey Autism fucking cared and the responses were depressingly predictable; the media and the Internet skeptics went ‘full awareness’, and found nothing of any alarm in these numbers, the Internet vaccine crazies went ‘full autism’, and assumed the numbers were solely comprised of individuals who would need 24×7 assistance for forever.  It was all a big joke.  Haha.

I don’t know how large the real increase in autism is (the older parental age data tells us unambiguously that some of the increase is non-imaginary), but I do know that as our best efforts at figuring this thing out has left us skipping from one in two hundred and fifty, to one in a fifty in eight short years.  To my eye, this means a real increase of fifty percent (or more!) could easily be hiding in the static and we’d never know.  Most everyone doesn’t seem to care, that is the way of the Prevalence Hookup, quickly embracing whatever prevalence numbers come out, coupling until a set of newer, bigger, even more ‘greater awareness’ numbers come along.

But my thoughts continue to be formed by concept of a sort of missed jackpot opportunity when I see a sense of complacency about our ever growing autism population; it isn’t that I don’t believe that diagnostic changes and the watering down of what a diagnosis means in terms of life skills aren’t affecting rates, those factors are clearly at play, but the ramifications of just “some” of the increase being real seems like a big, big, big deal to me.  When your population of interest is every child, a small real increase means a lot of individual children are affected.  Sure, it is, possible that older parental age is the only recent development that is affecting rates upward, with all of the rest being diagnostics, but I find little comfort in this notion.  If the soft social scientists are wrong, even a little, and there is a true increase in incidence, we may come to regret the solace provided by our collective bobbleheading at the mantra of ‘greater awareness’, for it enabled us to waste a great amount of precious time.

The thing is, it doesn’t really cost us that fucking much to apply more resources to the unimportant, nagging question on the neurodevelopment of a generation of infants.  In 2006, Bush signed the ‘Combating Autism Act’, a bill included a billion of dollars for ‘research, surveillance, and treatment’.  That’s two hundred million a year.  Last year, The Avengers, a stupid and shitty movie, made over a billion dollars.  Now, I know there are other funding sources for research, surveillance, and treatment, but there were also a lot of other stupid movies.

I believe that this prioritization is the equivalent of folding 10-J hearts to a dinky four dollar raise; the knowledge we could gain from a relatively small outlay is worth a lot.  We shouldn’t be worrying about the cost, we should be considering the payoff; the question we are trying to understand, “are today’s infants neurobiologically different than infants of the last generation?” has a difficult to understate payoff. We shouldn’t be embracing reasons to stop playing, we should chomping at the bit to see the next three cards.  This is an easy call.

And yet, there was a collective yawn when the CDC announced 2%.

Funny enough, it was just a few years ago that the UK NHS study of adults found a prevalence of 1%, a finding which was heralded as remarkably strong evidence that autism rates are stable (at the time, 1% was the general value for US children.  Oh well.).  For some reason, the robustness of the NHS adult findings didn’t cause anyone to exclaim that there is a sort of epidemic-lite, what with US kids having autism as twice the rate as NHS adults.  It was a classic case of doublethink; US kids have autism at 2%, England adults have autism at 1%, and autism rates are stable.  (Believing that any of the numbers have validity might be closer to triplethink!)

A while ago I saw an interview with Fombonne on the SFARI site that contained the unsurprising byline: ‘Eric Fombonne says that the new CDC report does not necessarily mean that prevalence is increasing’.   [Note: This was BEFORE the 2% numbers were reported!]  Anyway, he made some interesting points about the messiness of the autism data showing how silly the state by state numbers are; Utah has four times the cases that Alabama does, and utilized different diagnostic methods.  In the text of the interview, he reveals Utah also had very low levels of MR (~ 13% instead of ~ 28%), AND had a creepy low male to female ratio.  Either there is something really weird going on in Utah, or the ‘numbers’ from Utah and Alabama are not measuring the same thing.  It could also be that the numbers are measuring some of the same thing, and there are a couple of weird things going on in Utah (heh).  But the bigger point should be that we shouldn’t expect to get a decent understanding of autism rates at a national level by clumping together Alabama numbers, Utah numbers, and whatever other numbers, shaking up them up, and averaging them out.  Maybe the headline ought to read, ‘Pretty much somewhere between half a percent, and two percent of children might have something a psychologist, or a doctor, or both, have something called autism, the manifestations and lifelong impact of which vary considerably individually and regionally’, or maybe ‘Autism Rates: Your guess is as good as ours!’.

I don’t trust any set of numbers more than an educated stab in the dark.

[Note: for a slightly different take on ADDM numbers, you can see this interview on SFARI, where Walter Zahorodny reports that detailed analysis of NJ data indicates a likely real increase in rates.  Doh!]

I began to wonder; if almost nobody really seems worried about an ‘epidemic lite’, if no almost no one is alarmed that the confidence intervals in our data could incorporate huge numbers of actual people, why am I so concerned?  Is my version of the precautionary principle overly cautious?  I don’t know the answer to these questions, but I think that part of the answer lies within my journey autism, watching my son’s challenges (and triumphs) unfold, and the knowledge that whatever we find about autism incidence, he will be reliant on other people for his survival for his entire life.  That is the gift autism has given him; it doesn’t mean he can’t be happy, it doesn’t mean he can’t experience love, but so far, we cannot detect that autism has provided him anything other than near debilitating OCD, an imperfect sense of dangerous situations, and a lifelong requirement of the kindness and capabilities of others.

I am filled with a pervasive and soul crushing sadness at the possibility of one ‘extra’ child having the same challenges because of changes we have collectively made to the environment, and that is the heart of the semantic dance over how much of the increase is real.  That is the Jackpot.

But, your mileage may vary.  I know that there are some parents and people out there who have challenges as heavy as my son’s, and they don’t share my sense of panic over the issue.  A lot of people credit their autism with benefits.  I won’t discount their experiences.  Part of the reason we don’t see eye to eye may be that we look at the same question, but see different risks, and different payoffs.

– pD

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Hello friends –

One of my biggest problems with the Fairytale of a Static Rate of Autism is that we need to ignore the reckless environmental engineering that our species has engaged upon in the past few decades.  My concerns lay within the inherent, difficult to underestimate stupidity of our actions, wherein our perceived understanding of the impact our actions are far less pronounced than the actual impact of our actions.   For the telescopic illustration of this worldview, go back any number of years where X is greater than thirty, and see if the expectations and predictions of those times match up well with what has actually occurred.     While our achievements are great and wondrous, it is at our great peril we come to believe we understand sufficiently our actions to predict their outcomes. 

In any case, a progenitor of great concern, or indeed, impending doom, to my mind, is the increasing environmental ubiquity of a variety of industrial chemicals that have the potential to interfere with biological processes in difficult to predict ways, endocrine disruptors.   Although there are no doubt naturally occurring substances with similar properties, for purposes of this discussion, lets assume that my concern (and yours), should be with chemicals that were manufactured by man that have molecular structures so similar to naturally occurring molecules that they can interfere with low level metabolic processes in a myriad of ways that are difficult to understand without very detailed analysis.  Unfortunately, subtle effects during critical developmental time frames can propagate outward into long lasting, not so subtle effects.  Doubling down, we are largely reliant on corporations largely responsible for the next quarter share price to ascertain if subtle effects are happening or not. 

To  start the horror show, considers Bisphenol-A , a plasticizer used in pretty much everything, but especially in things like the tupperware you put in the microwave, bottles you give your baby, canned goods, or anything else you buy in the grocery that has a shelf life.  This particular mish mash of atoms tends to break down into something that is chemically very similar to estrogen, so similar, in fact, that the keys and locks of the cellular machinery of your metabolism can get confused.   It turns out, when this happens, we start seeing disturbing associations between circulating levels of BPA and a variety of conditions you’d rather not have, including heart disease and diabetes.  On top of tons of animal models of BPA exposure and metabolic dysfunction, immune changes, and we now have several human studies wherein urinary levels of these chemicals is associated with adverse outcomes.    And those are just the direct effects!

It would seem that BPA can have epigenetic effects too, wherein it can modulate which genes get expressed, and that’s a lot like getting a whole different set of genes.  For a fascinating (and terrifying) ride, I’d recommend that anyone take a look at this slide show from NOVA science now that goes over some of the effects of BPA to a prenatal environment.  I  double dog dare anyone who doesn’t think we are doomed to watch this episode. 

That was the good news. 

The uncontested facts on the ground are that, as a species, we are being exposed to BPA in ways that no previous generations of humans, or mammals, vertebrates, invertebrates, or living thing has ever been exposed to.  There is no way we are clever enough to understand the ramifications of this, and yet, we have up and distributed BPA in measurable and non trivial concentrations in every human body touched by modern convenience. 

The Scary Chemicals stories will involve research on a variety of chemicals identified as endocrine disruptors with known or suspected properties that would allow them to interact with development in ways meaningful to autism research.   BPA is one.  There are many, many others.

Oh well.

– pD


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