The Fairytale of a Static Rate of Autism Part 5 – The Prevalence Jackpot Versus The Prevalence Hookup, Futilely Struggling To Making Sense Out of Static, And How Journey Autism Flavors Our Path Of Moving Forward
Posted April 17, 2013
on: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
28 Responses to "The Fairytale of a Static Rate of Autism Part 5 – The Prevalence Jackpot Versus The Prevalence Hookup, Futilely Struggling To Making Sense Out of Static, And How Journey Autism Flavors Our Path Of Moving Forward"

“collective bobbleheading at the mantra of ‘greater awareness’”
well put


re: “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…”
Keep in mind that until about 50 years ago we didn’t have birth control and people kept having babies until wives reached menopause. We didn’t have a lot of reports of autism in the youngest siblings. There is more chance of syndromes involving one too many or one too few chromosomes, such as Downs.
Older parents is not a brand new phenomenon, although having the first baby at an older age was less likely to occur in the olden days.


Here’s something that I find interesting about this: The CDC has released data every two years for 8-year-olds starting with those born in 1992, then ’94, ’96, ’98, and most recently those born in 2000. During this period the prevalence increased from 1 in 150 to 1 in 88.
http://www.cdc.gov/ncbddd/autism/data.html
Now they come out with a phone survey showing a rate of 1 in 50. Why don’t they tell us the rate of children who were 8 years old in 2010, born in 2002? Wouldn’t that be the logical next step? Does it really take over two years to gather this data? Did it really have to take 4 years to come out with the data for children who were 8 years old in 2008?
Now vaccine-defending bloggers are claiming that the 1 in 50 rate shows that the rate of autism has continued to increase after thimerosal was decreased in many vaccines. Next we will have the change to DSM-V so the next survey will be comparing apples to oranges. It seems to me that the CDC is trying to muddy the waters, not shed light on the situation.
Since you don’t mind the “f” word, I will say that it is so fucking obvious that the rate of autism has increased A LOT. I’m over 50 years old. If we had held an autism walk when I was a kid hardly anyone would have shown up. We would have asked, “What’s autism?” These days thousands of people show up for autism walks, because so many have close family members with autism. I know people who have worked in institutions for the developmentally disabled for many years, who say that their clients used to primarily be CP and Downs, and hardly any with autism. The school statistics, the regional center statistics, the UC Davis studies, the 1987 peer-reviewed study “A Prevalence Study of Pervasive Developmental Disorders in North Dakota” which looked at all 180,000 children under the age of 18, and found an autism rate of 3.3 per 10,000 – and then followed the kids for 12 years and found they had only missed one autism diagnosis – all of these confirm a huge increase. The idea that in the old days autistic children simply disappeared unnoticed into institutions doesn’t make sense. We knew when our friends and neighbors and classmates had babies. Are we to believe that we had conversations like this?:
A: How’s the baby?? 🙂
B: Never mind.
And then we just forgot about them?
The huge increase is obvious, it’s so obvious that one can only conclude our health authorities are bullshitting, from which one can only conclude that they have something to hide: they know that vaccines cause autism. Maybe they hoped that reducing the level of thimerosal would make enough difference so that if they just kept futzing around for a few years the thimerosal-induced increase would be behind us with everyone too snowed to notice or remember. But it’s not just the thimerosal – it’s the unusual, unprecedented overstimulation of young developing immune systems with not just thimerosal but also aluminum adjuvants and more.


One factor in Utah’s high autism rate may be the high levels of environmental mercury, possibly a result of mining.
http://www.sltrib.com/politics/51849652-90/brown-county-fish-lake.html.csp
At the November 29, 2012 Congressional hearing on autism, Rep. Jim Matheson (D-Utah) asked about the disparities in autism rates in different states, saying that Utah’s rate is 1 in 47. He asked the govt agency folks whether they are studying reasons for these disparities? Dr. Boyle talked about differences in how states identify autism, but then was unable to provide any firm basis for believing that this accounts for the disparities – basically it was an assumption. 02:10:57
http://www.c-spanvideo.org/program/309672-1


“and a lifelong requirement of the kindness and capabilities of others.”
…exactly and what are the odds on that?
I think what’s happening, in the Uk at least, with the increasingly harsh attitude to the unemployed in the MSM, especially those who would have previously had disabilities recognised as long term impediments to finding and keeping work, along with cuts to adult social care etc is an indication that someone’s looked at the numbers for the future and said no way can we afford this.
Unfortunately you can’t budget for kindness anyway…they should at least stop doing such a good job of fomenting the opposite >-<
If the research doesn't get done it's cos they don't want the answers. They'll come out anyway…if only sideways through cancer research/diabetes or some such, as answers to others' questions..
Did you see the suramin thing, normalising all sorts of parameters alongside behaviour of autism model mice? Used to treat sleeping sickness…ding! Happy to see that as of my sons hypersomniac weeks after sinusitis last autumn, compulsions/automatisms a big feature in the few waking hours. More clues…
Pregnant women need to be around people who can provide them with an immune shield (i.e family)so as to limit triggering immune system and possible rejection of foetus; probably true for postnatal year or so too for best immune driven (glia etc) development.
I think that might be one of the key changes we've had, through working while pregnant, then child care and vaccinations.
My husband plays poker up to 4 nights a week, guys say "she must really want you out of the house!!!" He'd play 7 if he could and go to sleep replaying the hands 🙂


Hi Pd, as always, really interesting thoughts.
Hi Twyla!
Re is something really happening, a while ago I decided that if
A autism is inflammation and
B something is causing an increase in inflammation in this generation, as opposed to we are noticing nerdy types in a way we haven’t before, then
other autoimmune problems should be increasing also..
And may be easier to track. Its harder for example to say that increases in Type 1 diabetes are caused by “better diagnosing”, given that non treatment= death.
The reports of increasing rates in areas such as asthma and type 1 diabetes seem to be met with a similar yawn to that of the increase in autism.
Don’t know where it is , but did read a study that compared celiac disease in the past (through looking at bowel biopsies, I think ???) and now, and came to the conclusion there was an actual change in the prevalence of celiac disease now. Will try and find it and give more exact info if anyone is interested.
I think that unfortunately what we are seeing is best described as the phenomena of “how to boil a frog” ( Slowly, heating up the water gradually so it doesn’t notice what is going on…)
And I think the idea that we may have been changing the immune system of a generation is way too scary for people to choose to consider.
Treating acute diseases is easy; the possibility that we have unintentionally created a generation of people who have an increased rate of immune dysfunction is put in the “too hard” box and best ignored.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2704247/
http://www.ncbi.nlm.nih.gov/pubmed/12923372
‘And may be easier to track. Its harder for example to say that increases in Type 1 diabetes are caused by “better diagnosing”, given that non treatment= death.’
😉 exactly!
Hi,
this is what I thought too, mostly it was the rise in the rates of asthma/eczema/atopy. Also coeliac disease, see above links (don’t know if that’s the same thing you’re thinking of?)… the second one a bit of a surprise! There was a gold mine of data from air force recruits around the time of some epidemic or other in the 50s, samples happened to be accidentally stored in perfect conditions. the guy studying it was called Murray i think…
I also remember reading a study where deficiency in niacin was found to be an exacerbating factor in reactions to grains – it ws in diabetic mice -poor mice again!- I think. Maybe the nicotinic acid receptor activation by smoking protects somehow and that would explain the negative correlation with coeliac?
Also apparently giving acetaminophen at the time of vaccination is a no-no as it interferes with the production of antibodies…part of me thinks that might be no bad thing if auto-antibodies were to be part of the various problems, along the lines of PANDAS?
So many things have changed though, we’re basically all n=1 and observation, see what helps, what doesn’t. But i’m optimistic as there is so much interesting research being done. We’ve just got to hang on!



https://www.stopcallingitautism.org/recentresearch.html
I don’t know if anybody has seen/heard of this?
I’m betting that UCLA research grant is a sign that the race is on. As in there’s enough of a theoretical basis to start treating, someone’s got to get the patents first… without any mention of where this increase in immune anomalies might have come from, of course. Not a conspiracy theory, just a massive elephant in the room ;-),
Anyone wanting to try DIY, the below is afaik non-toxic, also inhibits HSV replication, H Pylori too through interfering with it’s adhesion mechanism I believe.
http://www.ncbi.nlm.nih.gov/pubmed/21570441


Hi PD, hope all is going well for you. I love reading your stuff, and keep hoping for another entry, but also know how busy life can get raising a kid with special needs.
And thanks for the celiac blood link.
By the way, I do agree that
Some autism is unrelated to inflammation; fragile X syndrome, agenesis of the corpus callosum, for example.
While I suspect that vaccine injury increasing inflammation is a primary cause of the current situation, I agree that there may be other factors playing a role also. Herbicide use on our food , for example. One of the aspects of GMO round up ready wheat for example, that is often not mentioned is that it is specifically designed to be able to survive more herbicide application and still be able to grow to make it to market.
I live in farm country, and watch the pesticide /herbicide crop dusters spray the fields every year. The surrounding land with large scale long term pesticide and herbicide residue will grow little but particularly hardy weeds unless you import fresh earth. At the end of each harvest, the old practice was to burn the fields before starting the next crop. Due to anti smog laws, farmers will often now spray herbicide to kill off the remaining seeds before planting their new crop.
What they plant next, whether gmo or conventional, has to be able to survive the herbicides, and of course that means that most conventional food has more herbicide/pesticide residue than our ancestors used to eat.
Does this have an effect? Have also been wondering whether eating more herbicides might effect the long term bacteria balance in the gut…Just speculation, of course.


Long time no post! Hope all is well.

April 17, 2013 at 4:52 am
One of the most innovative research funding approaches to a major health condition in this case Macular Degeneration is described by lead scientist and researcher Dr Peter Coffey here
http://www.thelondonproject.org/FAQ/?id=56
Basically Coffey was given a large sum of money and an outcome.That sum is being added to all the time.
In 5 years come up with a cure for Macular Degeneration
Research and manufacture to clinical trial level a cure to a devastating disease – that first part has been successful….and do it in a set time frame.
He put together a team of researchers , clinicians and most importantly engineers , manufacturers and partnership with a drug company Pfizer.
An all encompassing mini Lab – Bio /Drug company
http://www.abc.net.au/radionational/programs/healthreport/age-related-macular-degeneration/4564824#transcript
This isn’t research for research …this is research for outcome
a paradigm shift from say Universities and academia which are driven by publication. Coffey hasn’t published a paper during those 5 years the end goal is the most important cure not just sustaining a research,
Give $10 – 20 million to say California of Technology Paul Patterson laboratory , give him an outcome and well let him go …
April 18, 2013 at 1:28 am
Hi ASDResearchInitiative –
Neat stuff / great ideas in there. It’s a tough balance to strike; the pure research avenue does frequently provide unexpected findings, but on the other hand, not being driven by an arbitrary deadlines to publish X papers per Y timeframe can provide a more narrow focus. I love that the guy has been working for five years, instead of typesetting. Nice.
– pD
April 27, 2013 at 1:20 am
Serendipity
http://newsroom.ucla.edu/portal/ucla/ucla-receives-major-nimh-contract-245449.aspx