Emily Willingham
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Friday, November 30, 2012
Autism Congressional Hearings: Bingo, vaccines, and some baby steps forward
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View the story "Autism Bingo: The Congressional Version" on Storify
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Autism Bingo: The Congressional Version
For years -- YEARS -- any discussion involving autism must perforce derail into namechecking various alarmist buzzwords some associate with the condition. In the spirit of bingo memes, I bingoed the 11/29 Congressional hearings, here with commentary.
Storified by Emily Willingham · Fri, Nov 30 2012 12:32:26
I hope that members of this committee realize that autistic people are watching&listening #congressionalhearing #autismEmily Willingham
First, there's the language of crisis and disaster. No one ever seems to understand or remember or care that autistic people can hear, read, and understand these things. Even if they couldn't, is it still OK to talk about people in this way? Pause for a minute and think of the way you define yourself: female, male, parent, brunette. Now insert your self-identification term into this sentence: "[My self-ID] is ..." and completed with one of the following:
Public health crisis! #autismbingo #congressionalhearingEmily Willingham
Blaxill: Arguing both a crisis and a conspiracy theory. DOUBLE BINGO!! #autismbingo #congressionalhearingEmily Willingham
Disaster! #autismbingo #congressionalhearingEmily Willingham
Changed overnight! #autismbingo #congressionalhearingEmily Willingham
Now imagine that your self-identification, crisis and disaster that it is, is horrifying congresspersons to their very root hairs because it is *increasing.*
Prevalence going up! That means HORRERZ! #autismbingo #congressionalhearingEmily Willingham
"Terrible number" is a direct quote:
1 in 88! Terrible number! #autismbingo #congressionalhearingEmily Willingham
And there's some confusion about what this number means and how we arrived at it and the increased prevalence over the years.
Ms. Maloney doesn't want to hear that we have better detection for #autism. Is the Pseudoscience Fairy there to respond to her?Emily Willingham
Matheson from Utah. His state is 1 in 47 prevalence. No one here knows incidence vs prevalence. #autismEmily Willingham
Utah rep asks why Utah has diff #autism prev from nat'l avg. Honestly? Bc US does not hv centralized health stats database like Denmark egEmily Willingham
Because your existence is so offensive, so horrific to bear, congresspeople talk a lot about curing you or even preventing the existence of people like you. This latter makes me shudder. Why? I imagine myself as uninformed, unsure, swayed by "monster" videos from leading autism organizations and depictions of autism as a non-stop, hopeless tragic horrorshow, as many people seem to be. I imagine that there's a way to identify autism in the womb with timing that would allow termination or that there's some way to stop its developing. And I imagine turning to one or the other out of abject fear of the unknown, those images of monsters and disaster and crisis, and choosing not to have a child like my oldest son, one of the most wonderful, deeply happy, delightful human beings I've ever had the pleasure of knowning. And so, I shudder.
Cure! Prevention! #autismbingo #congressionalhearingEmily Willingham
But of course, maybe my son isn't autistic enough to be autistic. Blaxill, of SafeMinds, asserted that when a child has autism, it's easy to tell. That's so odd, considering how many parents I know whose children are profoundly autistic who struggled, sometimes for years, for that child to receive the services-conferring label. (We did not. Our son was referred by a screening and diagnosed at age 3).
Blaxill: It's not hard to find a child with #autism. It's OBVIOUS when a child has #autism. Parents who struggled so long, good to know yes?Emily Willingham
Imagine that your parents are writing to congress people about how horrible their lives are with you. One congresswoman harped incessantly on how important what she called "verbal evidence" was, how much scientists need to listen to it. That evidence is actually called anecdote. Anecdotes are important--in science, we call them "case studies"--but they don't add up to a body of evidence. Many, many researchers have listened to parental stories and followed them up as leads and hints about autism. Regardless, anecdotes have no place in weighing against a body of evidence.
Verbal evidence! #autismbingoEmily Willingham
And now, imagine being a scientist. One who knows how much money has been poured into following up, in part thanks to "verbal evidence," the dead-ends of vaccine or mercury causation in autism. Imagine watching this decade-long wasted pursuit, a period during which autistic people who need support and services, who could have benefited from targeted education to become well-functioning contributors to society, languish below their potential while people raise and spend millions chasing a heavy metal phantom and undermining one of the most successful public health initiatives of all time. Listening yesterday, I heard people say things like "No possible environmental factor can be ruled out" and citing single (and very poor) correlational studies as foundational and compelling. And hardly anyone seemed to have done their homework, asking the most basic questions about mercury and childhood vaccines.
Here's the thing. Even if vaccines had some influence on a tiny subset of autism cases (which no evidence suggests that they do), would that somehow translate into its being OK for VACCINES to dominate EVERY SINGLE DISCUSSION about autism? Why is it OK for a congressional hearing about the federal response to autism to spend an enormous amount of time talking about vaccines and mercury when of all the possible causatives in this condition, these have been researched to death with nothing to show for it? Why is it OK to talk on the one hand about 1 in 88, over and over, yet not address the very real, existing service and resource needs of those 1 in 88 and the autistic adults, as well? Why have we let a small, loud minority fearmonger their way into hijacking out national discussion about autism?
As expected, this #congressionalhearing has turned into an effort at a referendum on vaccines #autismEmily Willingham
Kucinich: Coal! Mercury! #autismbingo #cardstacking #congressionalhearingEmily Willingham
Citing very crappy single study as compelling! #BINGO #autismbingo #congressionalhearingEmily Willingham
I like that this guy is pressing CDC abt how many studies they've done when ONE study wld be all he needed to confirm his bias #autismEmily Willingham
Blaxill: Stop investing in "#autism gene hunt." Do we use muskets or bows for that? #congressionalhearingEmily Willingham
Can't rule out ANYTHING #autismbingo #congressionalhearingsEmily Willingham
Throw more $$ at COAL bc 1 study said correlation! #autismbingo #congressionalhearingEmily Willingham
One thing that came up repeatedly was a standard-issue anti-vaccine demand that someone in the federal government conduct a study of vaccinated versus unvaccinated children. I assume they mean a prospective study, which would require purposely not vaccinating one group of newborns while vaccinating another group, monitoring them from birth to a certain age, and looking at rates of autism. Performing a study like that, withholding a proven preventative against infectious and sometimes fatal diseases, would be unethical on both the individual and societal levels. That has been explained repeatedly with every demand for such a study. Retrospective studies--in which children whose parents, for example, didn't have them vaccinated--are possible and have found either no difference in autism rates between vaccinate and unvaccinated children or--interestingly enough--some correlation implying a protective effect, ironically, of thimerosal-containing vaccines against autism.
Do a study of vaxed vs unvaxed children! #autismbingo #congressionalhearingEmily Willingham
And clearly, some representatives received their talking points from the anti-vaccine crowd and dutifully parroted them back. A favorite is "Oh, too many vaccines now, too soon! The fragile infants! They can't take it!" Actually, yes, they can. And what no one bothered to point out is that today's children might receive more individual shots, but that's not what the immune system is counting. The immune system counts particles called "antigens," chemical signals that tell the immune system an invader is present, kicking the response into action. For a couple of decades now, children have been exposed to antigens in vaccines at numbers an order of magnitude (10 fold) lower than children in, say, my mother's generation or even mine. Based on how the immune system counts these things, children today are getting far less and not too soon compared to children of previous generations. But the stupid misinformation persists:
Burton: Children have a very fragile immune system. #autismbingo #notheydonotEmily Willingham
Too much, too soon! #autismbingo #congressionalhearingEmily Willingham
Are you looking at vaccinations?!? #autismbingo 9 at one time?!? #autismbingo2 #congressionalhearingEmily Willingham
Maloney: Space out the vaccines! (There's this thing called "google ....) #autismbingo #congressionalhearingEmily Willingham
Burton: Back to thimerosal! Why did they take it out!?? A: So people like you would stop wasting time talking abt it? #autismEmily Willingham
And if the science doesn't reinforce your pre-existing bias, then attack it through a person instead. A recent entry into the straw man attacks: Poul Thorsen, Danish embezzler and minor author on CDC studies. He's not really the "most wanted man on Earth" or anywhere else:
Thorsen most wanted man on EARTH!!! #autismbingo #congressionalhearingEmily Willingham
And of course, no autism bingo card would be a blackout win without a mention of Big Pharma and conspiracies:
Big Pharma reference! #autismbingo #congressionalhearingEmily Willingham
But of course, when you're a Congressman, you feel compelled to tell a scientist that said scientist needs to, you know, follow the science:
Smith to Guttmacher: You gotta go where the science is (but Smith does not). #autism #congressionalhearingEmily Willingham
Of course, when you ask specifically for the science from a scientist testifying before you, it would be nice if you bothered to listen to the answer:
OH MY GOD. He just cut her off cold, told her she wasted 2 min of his time. What abt my wasted TAX DOLLARS on this nonsense? #autismEmily Willingham
And citing various canards about how there is no autism in various other parts of the world because--pick the pet reason, but mostly because people there aren't vaccinated. (They are, or of they're not, there's still autism).
Oh, #FFS. Non-US children don't have #AUTISM! #autismbingo #congressionalchildrenEmily Willingham
Or wait ... maybe they do? It got pretty confusing in there:
AFRICA! So much #autism! ?!? That ringing you hear is the logic conductor calling to find out where Smith got off the train.Emily Willingham
Speaking of a lack of compelling evidence, for reasons that remain unclear, an inexplicable portion of time went to discussions of diet and autism and celiac sprue. And someone is a dentist, so he, like, knows, you know?
Diet! #autismbingo #congressionalhearing Add "I was a dentist!"Emily Willingham
Casein! Diabetes! Personal anecdote! #autismbingo #congressionalhearingEmily Willingham
Celiac! Wheat! Gluten! #autismbingo Cured w/diet! #autismbingo2 #congressionalhearingEmily Willingham
Then we had the most novel entry in the annals of autism distractions, even more novel than bleach enemas. Dan Burton took up two minutes of his allotted 5 minutes to show a video. This video featured, if I heard correctly, the effects of ingested mercury on neurons from ... snails. Two points: 1-we don't ingest mercury via vaccines. 2- we are not snails.
Burton shows video abt mercury effects on brain. Talks be Hg inhalation/ingestion. THAT'S NOT HOW WE VACCINATE. #autismbingoEmily Willingham
Finally, no discussion about autism would be complete if it weren't compared to fatal diseases in some context or another, This hearing featured comparisons to cancer and diabetes, and, yes, AIDS.
Issa, "It is fair to say that #autism, like cancer and other diseases, is a group of afflictions?" No, simile not fair.Emily Willingham
BILLIONS! AIDS! #autismbingo #congressionalhearingEmily Willingham
This hearing wasn't all like this. Autistic people were part of the second panel. Two congresspeople in particular asked important, practical questions about supports for autistic adults and resources and supports for identification and early intervention in underserved communities. One panelist from a university with a program for autistic people (Mercyhurst) also spoke to resource and support needs.
Reps. Davis&Norton standing out in this #autism Congressional hearing w/practical, important QsEmily Willingham
Davis continues w/practical Qs abt therapy costs. Good Qs abt actually urgent issues #autismEmily Willingham
Davis now asks abt children of color being dx'd later than their white counterparts&socioecon barriers to recog early signs. #autismEmily Willingham
Q. abt lower prev in Latino pops, asks if poss bc of lower awareness in Latino community #autism #congressionalhearingEmily Willingham
Tierney from MA: turns back to autistic adults, education. Says funding for some of that didn't make it in recent budget. #autismEmily Willingham
McGarry: hope that govt resources allocated to fund programs that assist students in college e&becoming productive citizens #autismhearingEmily Willingham
McGarry of Mercyhurst: Overeducated/under/unemployed autistics heading into the adult world. They need support. #autismhearingEmily Willingham
And on the second panel, two autistic panelists, Michael John Carley of GRASP and Ari Ne'eman of ASAN, spoke eloquently and compellingly about similar issues.
Carley: I can't express my disappointment that the conversation on vaccines is still evident. #autismhearingEmily Willingham
Carley: It is an ethical mistake to sacrifice the possible for the probable. #autismhearing #autismEmily Willingham
Carley: #Autism commy is 1 of the most unhealthy atmospheres. He thinks bc services are so limited. #autismhearingEmily Willingham
Carley: majority of autistics can read&hear what's being said abt them. We need to hear what WE CAN DO, not what WE CAN'T. #autismhearingEmily Willingham
Carley: 2nd consideration is tone/language we use. Imp to some1 on spectrum who grows up hearing defeat/cure/combat. #autismhearingEmily Willingham
Too few are equipped to educate the autistic population. JOBS creation right there, people. #autismhearing #autismEmily Willingham
Ari proposes research into prevalence of #autism among US adults. #autismhearing @ejwillingham Damn fine idea, too!LBRB
Ne'eman mentioned underdx of girls/women on the spectrum!!!! #yes #autismhearingEmily Willingham
Ari talks abt nonspeaking autistic he met named Joe. It's a political hearing, so there has to be a Joe. #autismhearingEmily Willingham
Ari: Attention paid to needs of autistics today is laughably small. #autismhearingEmily Willingham
Ari says current research agenda ignores the needs of ppl like Joe. #autismhearingEmily Willingham
But then there was this:
MT @ejwillingham: Low point of #autismhearing: Cutting off #autistic panel member to give Blaxill more floortime (ha) w/o addressing a QShannon Rosa
But overall, compared to the last Congressional outing on autism, these discussions and the representation from autistic people--although last minute additions--were quite welcome and signal a sea change in what we talk about when we discuss the federal response to autism.
Efforts to drag vaccines/mercury, etc., into it looked rather desperate in the face of Qs/responses abt practical needs #autismhearingEmily Willingham
In spite of efforts efforts at vaccine distraction in 3d ring, the other 2 rings homed in on important areas of discussion #autismhearingEmily Willingham
I just wish--how I so very much wish--that when people pull together hearings like this to have these talks, they would remember that autistic people are listening, too.
Tuesday, November 27, 2012
Graphs of air pollution values since 1970 and autism prevalence since 1985
More
over at Forbes
on why I made these graphs.
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