The Trouble with Long Shots ...

... is that they so rarely hit their targets.

The long shot to which I refer is John Elder Robison's three-year effort to nudge Autism Speaks's research funding priorities toward therapies that help make autistic people's lives easier, as opposed to determining causes and finding ways to prevent more autistic people from being born.

From a 2010 blog post explaining his reasons for accepting the position:

One of my principal areas of concern will be identifying and funding studies that have high likelihood of improving the lives of autistic people today. Research into causes of autism is important, but I want to see more research aimed at remediation of specific components of autistic disability. The TMS [i.e., transcranial magnetic stimulation] work I'm involved in at Harvard/Beth Israel is a good example of work that can lead to better lives for today's autistic population. 

... 

In addition to my work on the science side, I hope to work more closely with the Wrights and Autism Speaks management to help the organization appreciate the needs of autistic people at all points on the spectrum. That's going to be a real challenge because the views of different people on the spectrum are so widely divergent. 

When the Wrights founded Autism Speaks their focus was on children with significant autistic disability. While that remains important, I hope to broaden the organization's focus to welcome and support less impaired people too. I also want to bring some attention to the plight of adults on the spectrum, many of whom grew up with no awareness of autism at all.  

... and another one going into greater detail about his role on the advisory board and how he hoped to make use of it:

... [T]he [research] proposals that made it through the initial screening reach the review board - the place I serve. Proposals are dealt out to members of the board for a first ranking. Much of the time, three reviewers read each proposal. They may be assigned randomly, or they may be dealt out by expertise. However they are allocated, if there are 30 of us on the board, and there are 100 proposals to deal with, we will each be assigned ten.


We will rate the proposals we are given in several areas, like the impact on the community, how likely the work is to succeed, and whether it's truly new research or a rehash of something already covered. Each area is scored from 1-5, or perhaps 1-7. So a proposal that I (or any of us) rated 4,4,5,5,3 in each of five areas would have a composite score of 4.2. 

The three initial reviewer scores are combined for a total score, and proposals are ranked based on this first pass. At that point, staffers take the funds available for allotment and they see how far down into the ranks the money goes. For example, if we have twenty million dollars to distribute, that might be enough to fund the top third of the applications.

Given that, the agency takes all the proposals in the top third, plus a cut of the next tier, for final review. That's where we all discuss them, and we all vote. And that's where any one voice can matter a lot. I'll give you an example. Let's say a piece of research involves social skills training, and most of the scientists give it a 3 for importance. But I feel that it's a really important proposal, based on my life experience, so I speak up. By doing so, I cause people around the room to rethink the proposal's importance, and a number of people move their score from 3 to 4 or even 5. The result: that proposal's average score rises, which moves it from "not good enough to fund" into the "recommended for funding" category.

Now, following the publication of this op-ed article from Autism Speaks founder Suzanne Wright on the organization's website, Robison has resigned from both of the boards he had been sitting on.

Here is his post explaining why he did that.

I care about this, and am saddened that Robison feels like he hasn't been heard, even though I pretty much consider Autism Speaks to be the enemy, because I did have a sliver of hope that he could shift their priorities a little, and through them get funding for projects that might help people, and that might not get any funding otherwise*. (It's not like the NIH or NSF are drowning in money these days ...)

Now that he's stepped down, that sliver of hope is gone. I have no reason to extend even the slightest, most infinitesimal modicum of goodwill to Autism Speaks. 

It had already been my practice to discourage people who wanted to Do Something for Autism from donating to them and recommending other charitable organizations that do more for actual autistic people, so I guess I will be doing more of that! I will also be contacting my Representative and Senators and telling them that Autism Speaks doesn't speak for most autistic people, and that they should not think that allocating money to them will make any difference to autistic people or their families.

Once again, here is a list** of autism-related charities*** I consider more worthwhile than Autism Speaks:

AAPD - American Association of People with Disabilities

AASPIRE - Academic Autistic Spectrum Partnership in Research and Education

ADAPT

ASAN - Autistic Self Advocacy Network

Autistics.org

AWN - Autism Women's Network

DREDF - Disability Rights Education and Defense Fund

Easter Seals

National Disability Leadership Alliance

National Disability Rights Network

NOEWAIT - National Organization to End the WAITlists

Not Dead Yet

SABE - Self Advocates Becoming Empowered

TAAP - The Autism Acceptance Project

TASH

The National Council on Independent Living

*They still would have been the enemy, and I still would've encouraged people not to donate to them, and my ideal scenario would still have been that they should dissolve, and clear the field for less harmful organizations. But people can work on that objective while other people --- like Robison --- work on others, like getting more of their grant money to projects that might help improve quality of life for some autistic people! We can walk and chew gum at the same time. (Well, metaphorically if not literally. I cannot literally walk and eat something at the same time, but I can simultaneously favor more radical long-term strategies and short-term harm-reduction measures. My mind is nimbler than my body.)

**There are going to be more names on this list than there were the last time I did this, because I've found out about more organizations.

***Includes cross-disability organizations

The Most Bizarre Autism Hypothesis Yet

Banner ad for a video and ebook promising to explain how "Global Elite Uses Vaccines to Create Autism", and also "How Autism Profits the Globalist Cronies"

A commenter on one of Orac's recent posts linked to this website, which lays out one of the most ludicrously counterfactual Autism Hypotheses I've ever seen: the global elites are deliberately making people autistic (using vaccines, obviously) because autistic people make better, more docile workers.

Graphic from anti-vaccine crank website showing the All-Seeing Eye as it appears on the Great Seal of the United States, as the capstone floating above a pyramid, with the Eye of Sauron photoshopped in as the pupil of the eye. The words "Neo Aristocrats" are superimposed over the eye, and over the pyramid below are the word "Servants" with a red line below it, and the words "Delta Technicians" (a reference to the caste of developmentally disabled menial laborers from Brave New World) below that. Below the picture is a quote from Lord David Freud, a Conservative member of the UK's House of Lords, in which he talks about the benefits to businesses of hiring autistic workers. He says, "... it makes good business sense to employ people who are reliable, punctual and loyal; people who have good attention to detail and concentration levels..." Indeed it does! But that doesn't mean people are running around zapping people with Autism Rays, or even hiring as many of us as there are who need jobs.

Now, if you're like me, you moved right past the first two absurd premises --- vaccines cause autism and big pharmaceutical companies want to make people sick --- because you've heard them so many times. No, what floored me was the immense, crushing irony of their believing that autistic people make such desirable employees.

There's that Brave New World reference again

Do they not know how many of us are unemployed, underemployed or mal-employed*?

They cite Goldman Sachs UK's recent decision to offer (paid!) internships and job placements to qualified autistic people in London as proof that autistic people make desirable workers, but they totally miss the fact that the company had to set aside these positions specifically for autistic applicants. Not only that, but this program (and others like it, at other firms like SAP and Freddie Mac) represents a long-overdue first step toward integrating autistic people who are willing and able to work into the mainstream economy. A first step. A departure from the way things are normally done. And a drop in the bucket compared to how many autistic people are still shut out of the conventional job market.

There is definitely a flaw in your plan for world domination if you've designed the perfect army of loyal minions, but most of them can't get a job working for you.

*Malemployment, if you didn't know, is Mark Romoser's term for the scenario in which a lot of autistic adults find ourselves: working at a job far below your skill level and at a task for which you are unsuited. Like, say, an autistic person with an advanced degree working food service, where they struggle to keep up with people's orders and to talk to customers and prepare food at the same time. Romoser wrote an article about it, but it is behind a paywall. You can buy the article from Amazon for a lot less than you would pay if you got it directly from the journal (i.e., six dollars as opposed to fifteen), but it's still not free.

All Developmental Disability Is Autism?

Amanda Forest Vivian pointed out something interesting in this post (about a singer using the words "autistic" and "retarded" pejoratively, and then apologizing for it): People seem to be confusing autism, one particular developmental disability, with developmental disability in general.

Here is what she says:

There was a time when all developmental disability was assumed to be intellectual disability and people were confused by the word autism. Now the opposite seems to have happened--for example, when people find out I work with someone who is nonspeaking, they immediately assume she has autism, instead of realizing that there are many disabilities that could cause someone to be nonspeaking. In general, people will often describe anyone with a developmental disability as being "autistic"--even though intellectual disability is the most common developmental disability!

I thought of two reasons why this might be happening, one simple and one not so simple. The simple explanation is all the Autism Awareness campaigns --- people are hyper-aware of autism (aware that it exists, anyway; maybe not always of what it is), and have forgotten that other developmental disabilities exist. (Or maybe it's not so much that they've forgotten, but that the concept "autism" is always lurking near the forefront of their minds, ready to be applied to any person whom they might previously have categorized as retarded, crazy, spastic, etc.)

Also, with how much talk there is of an Autism Epidemic, people might be expecting to see autistic people a lot more frequently than they used to. In some ways, this is good --- people know that we exist, and that we live right alongside them and do many of the same things that they do --- and in some ways it hasn't gone far enough --- people don't seem anywhere near as aware of the existence of autistic adults as they are of autistic children --- but maybe it has also made it so that people expect to see more autistic people than there are, and maybe they're filling up the gap between how many autistic people they expect to see and how many autistic people they do see by lumping other developmentally disabled people into that category. 

It's annoying because autism is not the same as other developmental disabilities, and autism awareness at the expense of other disabilities might make it harder for people with other disabilities to get people to understand them, or make the accommodations they need as opposed to the accommodations autistic people are understood to need.

The second, harder-to-explain thing that occurred to me was that maybe the substitution of autism for developmental disability in general might reflect a value judgment*.

Non-disabled people are afraid of disability. They're afraid of disability because they know it could happen to them (or to their kid, if it's a developmental disability), and because this is an ableist culture that tells people that a life with disability is akin to death**. (Though, mercifully, I think there might be starting to be a little pushback on that point making it into mainstream consciousness --- disability activists have always said that our lives are worth living, but now a few scholars and journalists, here and there, seem to be listening.)

I think Western culture also fetishizes intelligence***, and sees it as one of the few things that can make up for the monstrous faux pas of having a disability in the first place.

You can see a marked difference in how allistic people talk about the autistic people they see as "low-functioning" --- i.e., having intellectual disability**** --- versus those they see as "high-functioning." The former they talk about as if they were not people at all, and in frankly eugenic terms about how much better off everyone would be if they didn't exist; they talk about how expensive such people are, and what a terrible burden they are on their families, the state, or both. If they mention quality of life at all, it's only to say something like, "Nobody could want a life like that..."

Attitudes toward the latter group are somewhat more complicated. Especially with the stereotypical "Aspie," whose impairments are minimal and only affect social interactions and are offset by exceptional intelligence and aptitude for math, science, or computers. They are also thought to be (at least, in their pop-culture incarnation) hyper-rational, like Vulcans, their thought processes uncluttered by emotion and petty interpersonal concerns. (This is an ambivalent form of idealization --- I usually write about it as a negative stereotype, since it also implies that we have no feelings and are amoral, and also that we are something not quite human. I have come to mistrust, intensely, any stereotype that carries that implication, even if it is ostensibly a flattering one, because "you're not human" too easily segues into "you don't have the same rights and protections a human would have." And yet I think there is an element of idealization in it, too.)

So there are competing ideas about these stereotypical autistic geniuses; on the one hand, people tend to mythologize them (or, sometimes, the people who come closest to fitting this stereotype tend to mythologize themselves) as the Prometheuses behind every great technological innovation in human history (c.f. Temple Grandin, "It was probably an Aspie who chipped away at rocks while the other people socialized around the campfire. Without autism traits we might still be living in caves.")

On the other hand, there is definitely a sizeable contingent that would like that category of autistic person to vanish from the Earth as well. I mentioned in an earlier post the growing stereotype of the Aspie psycho-killer (qu'est que c'est), a person whose complete lack of empathy enables them calmly to plan and carry out mass shootings. 

Anyway, my point was that intelligence mitigates the ableist impulse to dehumanize autistic people. Even in autistic people themselves --- how often do you hear, "I'm not disabled; I'm smart!" or some variant thereof? --- you see this come out as a self-defense tactic. I know I used it that way. For me, the problem was that my worldview was too individualistic to see that my individual merits didn't matter; that all people, no matter how smart or stupid, how virtuous or venal, deserve equal rights. I was trying to say, "I'm a person; I deserve to be treated like a person," but because of my internalized ableism it came out as, "But I'm not disabled! You should be treating me like a real person, not a disabled person!"

I think it's entirely possible that this set of biases --- disability is bad, intelligence is good, some autistic people possess intelligence --- might play a small role in explaining why a person who sees a developmentally disabled person jumps to the conclusion that the person is autistic. 

I've also noticed a strain of wishful thinking that says autism isn't really a lifelong condition --- it can be treated, or cured, by (in descending order of battiness) growing up, intensive behavioral training, changing one's diet, taking vitamins and supplements by the fistful, chelation, etc. That might enter into it, too. 

*Obviously I don't think any of this is happening at a conscious level, or with any ill intent. I think that if this is a real thing, and not just something I made up, it's operating at the level of an implicit bias, that you don't even know you have but that can subtly alter what you see to fit what you expect to see.

**Amanda Baggs has written some powerful, if horrifying, things about her own and her mother's experiences with doctors who believe this. 

***I know this is a very controversial statement, given that I am writing this in an American context, and anti-intellectualism is also a thing in American culture! I may write a post about that, too --- how those two contradictory attitudes coexist.

****I'm not sure that that's ALL "low-functioning" and "high-functioning" mean, but the presence or absence of intellectual disability, indicated by one's IQ score, is used often enough in the literature that I feel confident using it myself. And when I use these phrases, I use them to represent what allistic people think autistic people are like, not what I think accurately describes autistic people. Because I think that, while autistic people do vary in how impaired they are and how much support they need, I don't think degrees of impairment map neatly onto a binary of IQ less than 70 or IQ greater than 70. I also think that the same person can be "high functioning" --- need minimal support --- or "low functioning" --- need intensive supports --- in different contexts. Even Temple Grandin, the high-functioning autistic's high-functioning autistic, was what most people would call "low functioning" as a child.

Autistic People Are Human

So I'm a day late but I still want to participate in this campaign to change the Google search results for "autistic people are."

Here is what they are now:

If you can't see the image, it's a screengrab of a Google search box with the phrase "autistic people are" and a list of four choices to complete the phrase. The four words are, in order, "annoying," "smart," "evil," and "retarded." 

Annoying. Evil. Retarded.

Evil? Evil?!

I'll tell you, that one still surprises me. I've seen it before --- seen "autistic" used as shorthand for some moral failing, usually selfishness or a lack of empathy --- but it still astonishes me to see that people apparently see us that way. I'm used to the "empty fortress" stereotypes, where people think we have no inner lives, no thoughts, no feelings, that our words and acts are just random spewage that we cannot possibly have intended, that cannot possibly be directed at any goal, anything we want. We can't want, remember?

That's the stereotype I grew up with. It's a depressing one, and still very much alive. You can see it underlying mainstream America's indifference to the abuse, neglect, and even murder of autistic children by their parents (or other caregivers). "Kids like that are hard to take care of," people will say, "it's no wonder she snapped," or "it's no wonder they weren't up to the job," or "What else were they supposed to do?" And the kids themselves, their deaths don't seem as tragic as the death of a normal child would be. Their lives were cut short, but what kind of a life would it have been, really? These people never grow up, they just get older. Forty years old, sitting in your parents' living room? That's no kind of a life at all. Isn't it almost for the best, to have spared them that?

(No, it's not for the best. In case you were wondering.)

But apparently there's a new stereotype coexisting with this one, that of the stone-cold killer. It cropped up in the coverage of the mass shooting at an elementary school in Newtown, Connecticut, and also of the one in Aurora, Colorado. People were asking, like they always do, who had done this, and how could they have done it? And one of the answers was, "It was a disturbed young man who may have been on the autism spectrum."

I don't know exactly when that autism stereotype started to take root in the public mind; it seems to have come up as people have started to be more aware that some autistic people can speak, go to school, attend mainstream classes, and do very well academically. When I was a child, this was not generally known, and people often expressed surprise that a child as articulate and precocious as I was could have autism.

Like Landon Bryce, I blame Simon Baron-Cohen's increasingly popular conception of autism for this development. I know that Professor Baron-Cohen does not think autistic people are evil, or even that we don't have feelings for other people, but the terminology he chose to use --- calling us poor "empathizers" --- conjures exactly that image in a reader's mind. 

All head and no heart. 

This, of course, is one of the reasons why I'm not mollified by seeing "smart" on the list as well: because I know that the Autistic Genius trope can blend seamlessly into the stone-cold killer. Both are unhindered by emotion or personal attachment, both can act with equal ruthlessness. The only difference is in what they do, how they direct their dispassionate efforts.

(The other reason is that smartness is often seen as a consolation prize: oh, you're autistic? You must be GREAT at math! What's that? You're not? Well, what good are you then?!)

So, what would I like people to know that autistic people are? 

Human.

That's all.

Autism Hearing Transcript: Dennis Kucinich

Still image of Rep. Dennis Kucinich, saved from this video.

________________________________________________________________________________________________________________________

Thank you very much, Mr. Chairman.

Having had the opportunity to work with Mr. Burton on this for the last 10 years, I remember well, as I’m sure Mr. Burton does and some members of this Committee do, a time when a provision was snuck into a bill on homeland security that essentially shielded from lawsuits the manufacturers of thimerosal.

This was ten years ago.

And you know what? No one, for the members that have been here less than ten years, no one knew where that provision came from. It came out of nowhere and ended up getting buried in a conference report. Of course, it passed.

I mention this because it’s not as though we just discovered this matter, and while I salute the Chair for holding this hearing, we didn’t just discover this. My own theory is, while there are studies that are out there that are implicating environmental factors in autism, think about this for a minute: We know, as Mr. Burton laid out, the component of thimerosal, the component that stabilizes it, is mercury. We all know that mercury is more than a contaminant, it’s an environmental toxic. But it doesn’t only exist in liquid form! Mercury can also be inhaled.

And I would guess, and this is just my theory, that we’re not only talking about drug manufacturers; we might be talking about coal companies too. We have to be aware, there are reasons why this Congress and this government, has not effectively addressed this issue. When you had Lilly and others, Eli Lilly and others, contributing millions of dollars to trying to affect the outcome of elections, I will tell you: I salute this Chair for taking a shot, because, at the bottom of this, you have special interest groups who would resist any deeper research on it because it’s going to affect their bottom line. Meanwhile, you have children all over the country turning up with autism, so this is a new beginning, I salute the Chair for making it, but this goes way beyond thimerosal and start thinking about coal. Thank you.

_______________________________________________________________________________________________________________________

(end transcript)

If I were a swearer, I would be swearing right now.

Coal companies and pharmaceutical companies in league with each other in some dastardly plot to pump mercury into the veins of Amerca's youth, turning them all ... (gasp) ... autistic? The horror!

(Why they would want to do this is not really addressed, but whatever.)

I liked Dennis Kucinich before I heard this.

Autism Congressional Hearing Transcripts: Dan Burton

Still image of Rep. Dan Burton saved from this video

_________________________________________________________________________________________________________________________

Thank you, Mr. Chairman. 

Let me start off by saying, contrary to what has been stated in the media over the years, I am not against vaccination. I believe that vaccinations have a very important place in our society and have given us one of the best health regimens in the history of mankind. People live longer, and live better, and have less disease because we have vaccinations. 

What we have always opposed is putting toxic chemicals, or mineral --- metals --- in the vaccinations. 

Thimerosal contains mercury. When I was a boy, we used to have mercury in thermometers, and they said if you break that thermometer and the mercury gets on your hands, as years went by, that was toxic. 

In Indianapolis, we had a school where, in the chemical laboratory, in the health science room, they broke a vial that had some thimerosal in it, they evacuated the school, they burned the clothes of kids that came into contact with it, and the fire department came in with all kinds of equipment to make sure they weren’t exposed to it. 

Women who are pregnant, they say don’t eat fish that has mercury in it, and they caution them that there’s certain kinds of fish you don’t eat. You don’t drink water that has any mercury in it. There’s all kinds of reasons not to be exposed to mercury, and yet we continue to put it in vaccinations as a preservative. 

In 1929, they came up with thimerosal. They tested it on 29 people that had meningitis. They all died of meningitis, but they said the mercury in the vaccinations, or the thimerosal, didn’t cause any problems, it was not a contributing factor. So ever since 1929, it has never been completely tested, and they continue to put it in vaccinations! 

It wasn’t so bad when a child got one vaccination, or two or three. But when they get as many as 28 or 29 before they go into the first grade, it really hurts them. It causes a cumulative effect. The brain tissues do not chelate it, and it stays in there and causes severe, severe problems. 

Now I had, during the chairmanship which I had in this committee, when I was chair, for six years, we had about four years of hearings. We had people from all over the world: scientists from every part of the world, doctors from every part of the United States, who testified. And people from CDC and FDA said, “There’s no evidence that the thimerosal causes any neurological problems in people who are vaccinated.” And then we kept on, kept on, and finally we had some people from FDA and CDC who came and testified and said --- get this word --- there is no conclusive evidence that the mercury in the vaccinations causes neurological disorders. 

No conclusive evidence. 

Now, that word “conclusive” ought to stick in everybody’s mind, because what it means is there’s a possibility. Now my question has always been --- and I’m convinced that the mercury in vaccinations is a contributing factor to neurological diseases such as autism and Alzheimer’s, I’m convinced of it after all those years we had hearings --- but that word “conclusive,” “there’s no conclusive evidence,” creates a doubt. 

And my question to the presidents and CEOs of pharmaceutical companies has always been, if there’s any doubt, if there’s any doubt that the mercury in vaccinations can cause a neurological problem, then get it out. 

You shouldn’t put mercury in any form in the human body, especially in children in vaccinations. Or adults, in my opinion. 

When we get a vaccination for flu --- every year we get a flu vaccination --- we have thimerosal, fellas. I don’t know if you know that. They’re injecting a certain amount of mercury in your body. And over time, I believe it does have an adverse impact on the neurological system. Of adults. I think it’s a contributing factor to other diseases such as Alzheimer’s. 

Let me just say that the thing we need to do is always err on the side of safety. If the pharmaceutical industry were to go to single-shot vials, then you would eliminate the possibility of neurological problems because there wouldn’t be any mercury in them. 

The last thing I want to say real quickly --- I’ve got 20 seconds --- we passed a vaccine injury compensation fund to compensate those people who were injured by vaccinations. And it was supposed to be something that people could work with the government to get that money --- the pharmaceutical companies were putting money into that fund --- but it’s so hard for a person who’s had a damaged child or a damaged adult to get any money out of that fund, it’s unbelievable. We need to reevaluate that fund to make sure that people who are damaged by mercury in vaccinations need to have access to that so they can at least have some compensation to help with the rest of their lives. These people are going to live sixty, seventy years and they’re going to be a burden. Not only on the families, but on society itself.
__________________________________________________________________________________________________________________________
(end transcript)

You know you're not going to hear anything good when the speaker feels compelled to preface it with, "Now, I'm not against vaccines, but ..."

That's another five minutes of this hearing wasted on the completely fictitious vaccine hypothesis, and it really does not make me feel good about this hearing at all, or about Congress in general and their likelihood of doing anything helpful for autistic people, that this guy, with his thimerosal obsession, was apparently the driving force behind this committee's decision to look into autism. 

On a lighter note, this is the first I've heard anyone suggest that vaccines might be causing Alzheimer's disease, too! 

Autism Congressional Hearing Transcript: Opening Statement (1)

I'm slowly making my way through watching the video of the Nov. 29 congressional hearing, transcribing as I go.


(I'm not just doing it to have a complete, public, textual record; I also find having something I can read helps my own understanding, too.)

I'm going to post a bunch of separate, shorter transcripts here, one for each separate speaker.

Here's Rep. Darrell Issa*, Chairman of the House Oversight and Government Reform Committee, calling the meeting to order and making his opening statement**:
____________________________________________________________

(gavel pounding)

The Committee on Oversight and Government Reform will come to order. This hearing on “1 in 88 Children: A Federal Response to Rising Rates [of autism]” will come to order.

The Oversight Committee exists to secure two fundamental principles: First, Americans have a right to know that the money Washington takes from them is well spent, and second, Americans deserve an efficient, effective government that works for them. Our duty on the Oversight and Government Reform Committee is to protect these rights. Our solemn obligation is to hold government accountable to taxpayers, because taxpayers have a right to know what they get from their government. We will work tirelessly in partnership with citizen watchdogs to deliver the facts to the American people and bring genuine reform to the federal bureaucracy. This is our mission, and I might say today, in many cases we are dealing with people who, because of this affliction, may never pay taxes, but in fact their families and others pay for their entire life. 

Congress spends a lot of time discussing and debating issues, and in determining by our philosophical beliefs what the role of government should be. As we have seen in these debates surrounding TARP, stimulus, healthcare reform, these kinds of issues oft come down to where you fall on an ideological spectrum.

Today is no such thing. We’re having a hearing focused on something that spans from the ideological left to the ideological right. We’re drawing attention to something that has no political affiliation, no partisan allegiance, and sometimes --- and we believe, today --- not nearly enough focus on something that does not shorten life but dramatically --- or even slightly, but usually more than slightly --- reduces the quality of life, both for the individual and for their families.

I’m a father. As far as I know, I’m one of the fortunate ones. I’m not the 1 in 88. But right now, if the numbers are accurate, and if they continue to grow from the now 1 in 88 who are in some way ASD-affected, we in fact have an epidemic. It could be that some of the 1 in 150 at the start of this century was too low, that in fact people were simply not diagnosed. But few people believe that, in fact, there aren’t factors in our society and our behavior, in the air we breathe, the water we consume, or others, that are affecting how many people will be afflicted. 

We’re going to hear from a distinguished panel first, of people who do this for a living, try to get to the causes, prevention --- I won’t say “cure” today --- but at least the treatment, the understanding, and perhaps, in some cases, truly something that would mitigate their suffering. I know they’re frustrated. Congress, although we put nearly a quarter of a billion dollars a year directly into research, has not put the kind of dollars, perhaps, that could bring specific outcomes sooner.

On our second panel, a number of individuals who will say that in fact, one of the problems is we’re looking on one side of the equation and not nearly enough on what to do for the victims of various forms of autism.

The fact is, they’re all right. There is not enough money being placed into the various possible causes of autism. There is not enough study. Our government does not collect statistics as well as perhaps someday soon we will, so that in fact we can find out what the true number is, cross-check every aspect of how that number, which is a human being, came to be afflicted. 

The truth is we have a lot to do. I will not claim that I have come here timely. This is the last two days of my first two years as chairman, and this is our first hearing. But what I will promise you here today is that we will stay involved in this issue. We will stay involved through staff and through, if appropriate, additional hearings. I also would say to our first distinguished panel that one of the most important priorities I place today is in fact that we work with you and help you in this process, that we be a conduit to the rest of Congress on this important issue. In a few moments I’ll be swearing in --- I’m sorry, I’ll be recognizing, by unanimous consent, a number of members who would not ordinarily be here at a hearing, because they are involved in this issue but serve on other committees. 

Additionally, I want to apologize to all of those people who, rightfully so, would be well (?) to be heard here today. I could’ve had a second panel of at least twenty witnesses from organizations and affected individuals. We had the difficult job of selecting just six, and as the ranking member will undoubtedly agree, six is already a fairly large single panel. 

That’s one of the reasons I pledge to you today that any organization or individual that in the next seven days provides to us, as required by our rules, in electronic format --- or, if you give it to us in paper we will try to scan it --- we will include your statements and your information in the record. 

We’ll hold the record open so that the many who could not be heard live in testimony will in fact be at least in the record. I want to particularly recognize Brian Hooker [link] with Focus Autism [link] in the American Academy of Children --- well, actually it’s a long, long title --- sorry --- who in fact has been one of the people who has championed for today’s hearing, and a number of others. They’ve been essential in my getting a better understanding. 

I’d also like to thank --- and we will be recognizing two witnesses, er, two members, on each side: the former Chairman of the [mumble] Committee[***], Dan Burton, who years ago began a process of focusing on some aspects of this terrible disease. We in fact don’t know enough; our goal is to know more, and today is but a down payment on that. With that, I’d like to thank the ranking member for his assistance in putting together today’s hearing and recognize him for his opening statement.

_____________________________________________________
(end transcript)

I won't be offering a whole lot of commentary right now, but I would like to make note of the two people to be name-checked in this short speech: Rep. Burton, whose testimony I will put up shortly and which really speaks for itself, and this Brian Hooker, who is affiliated with some group I'd never heard of called Focus Autism. It turns out to be a crank group dedicated to the notion that vaccines are "an important contributing factor" to autism in children.

So that's not good. We're just in the opening statement, and already the vaccine hypothesis --- which ought to have no place at all in a discussion of how best to spend federal money on autism research, therapies and services --- has been moved front and center.

*I'd post the video, too, but I cannot find a separate clip of just this speech. I can find one for the second opening statement, by Rep. Elijah Cummings, but I can't find one for Rep. Issa's statement. If you can, and you give me a link in comments, I will gladly embed it.

**I'm not going to blockquote my transcripts because I find that, in this blog template at least, blockquoting makes things a lot less readable! These transcripts are going to be kinda long, so I really don't want to sacrifice readability. I will set them apart some other way, like drawing lines above and below the transcribed speech.

***I didn't completely catch this, but looking at Rep. Burton's webpage, he has chaired both the Oversight Committee and another committee, a subcommittee of the House Foreign Affairs Committee. Rep. Issa is probably referring to his past chairmanship of the Oversight Committee. 

My Favorite Thing!

(Spoiler alert: the subject of this post is not actually my favorite thing.)

I just discovered a blogger I find interesting; her name is Gretchen Koch* and she has a Ph. D.  in the cognitive science of religion. She mostly writes about that.

One of the things she writes about when she's not writing about the psychological underpinnings of religion and ethics, though, is feminism. A while back she wrote a pretty decent, thoughtful, well-argued post on objectification (a much-discussed topic, on which she managed the not-inconsiderable feat of adding something new).

That post drew the predictable ire from the knuckle-dragging community, but it took a really bizarre form:

After noticing a number of hits here that came from [sexist douchebag]'s blog, I returned to see that he had written a follow-up post which talked about my post. Want to guess what it said? I'll make it a multiple-choice question:

A. You know what? I am actually reading too much into this, and should go with the simplest explanation rather than making other men's attraction all about my particular ideological agenda.

B. You know what? I don't think I was given a fair shake -- there are actually differences in the appearance of feminists vs. non- or anti-feminists, and while I didn't go to much trouble to articulate these or why they should exist, that's a factor that should be taken into account here.

C. You know what? It's really weird that I didn't make a distinction between "attractive" and "attractive to me," since I can only speak for myself and since (as with everybody, whether they admit it or not) my own perception of what I consider attractive is shaped by my ideological convictions.

D. You know what? Gretchen's ugly. And probably autistic.

I'll give you a moment to think before answering. 

Done? Yeah, I didn't think it would take long. The answer is ... D!

Yes, it's my favorite rhetorical tactic in the world, Disagreeing by Diagnosing!

The argument assertion in the post she links (which I don't recommend reading, unless you've got a few dozen extra brain cells you won't miss) is that all feminists, and all male anti-feminists calling themselves "men's rights activists" (read this blog if you are unfamiliar with the genus), are autistic.

Here is normally where I would spell out what the writer is arguing, how he or she is using autism as a metaphor, and what the implications of that metaphor are, but it's not being used as a metaphor in this instance. He's just saying "all feminists are autistic," and that the only reason they are feminists is because they are so bad at social interaction that they have become completely alienated from men, and from society in general.

I was actually really conflicted about posting this, because it's a really stupid instance of Disagreeing by Diagnosing, and there isn't actually much to pick apart and criticize in it, but I've developed a collector's mentality about this fallacy, so I feel compelled to post about every instance of it that I hear about. 

The quality of the blog may suffer as a result of this compulsion, but gosh darn it, at least you'll know just how widespread this fallacy is!  

*Presumably not related to Charles and David Koch, though if she were I probably wouldn't hold it against her.

Another Writer Uses "Autism" Where He Means "Selfishness" or "Amorality"

I'm getting quite a collection of examples of this sort of rhetoric, in which the writer/speaker tries to discredit someone else's political philosophy by calling it, or them, "autistic."

So far, I have a literary critic contrasting Jean-Paul Sartre's nihilism and profound alienation from other people (which he calls "autistic") with Albert Camus's more humanistic philosophy; a liberal editorial writer asking "Are Republicans Autistic?"; a liberal talk-radio host comparing Republican reliance on "talking points" to autistic verbal stims; and a liberal podcast blaming President Barack Obama's inability to overcome opposition by a vocal Republican minority on his inability to understand them, coupled with his overly scrupulous adherence to rules.

The latest addition to this group, which I saw on Emily's blog, A Life Less Ordinary?, is the author, neuroscientist and outspoken atheist Sam Harris talking about why he thinks Ayn Rand's philosophy of rational selfishness is unrealistic, morally obtuse and incompatible with actual human nature.

Here is the relevant part of that post (I'm including a bit more context for the offending one-liner than Emily did, because I'm interested in exactly what "autism" is supposed to imply here):

Many readers were enraged that I could support taxation in any form [in an earlier post on taxes and income inequality in the US]. It was as if I had proposed this mad scheme of confiscation for the first time in history. Several cited my framing of the question --- "how much wealth can one person be allowed to keep?" --- as especially sinister, as though I had asked, "How many of his internal organs can one person be allowed to keep?"

For what it's worth --- and it won't be worth much to many of you --- I understand the ethical and economic concerns about taxation. I agree that everyone should be entitled to the fruits of his or her labors and that taxation, in the State of Nature, is a form of theft. But it appears to be a form of theft that we require, given how selfish and shortsighted most of us are.

Many of my critics imagine that they have no stake in the well-being of others. How could they possibly benefit from other people getting first-rate educations? How could they be harmed if the next generation is hurled into poverty and despair? Why should anyone care about other people's children? It amazes me that such questions require answers.

...

As someone who has written and spoken at length about how we might develop a truly "objective" morality, I am often told by followers of Rand that their beloved guru accomplished this task long ago. The result was Objectivism --- a view that makes a religious fetish of selfishness and disposes of altruism and compassion as character flaws. If nothing else, this approach to ethics was a triumph of marketing, as Objectivism is basically autism rebranded. ...

And I say this as someone who considers himself, in large part, a "libertarian" --- and who has, therefore, embraced everything that was more or less serviceable in Rand's politics. The problem with pure libertarianism, however, has long been obvious: We are not ready for it. Judging from my recent correspondence, I feel this more strongly than ever. There is simply no question that an obsession with limited government produces impressive failures of wisdom and compassion in otherwise intelligent people.

This passage rests on the same assumption I noticed in the editorial "Are Republicans Autistic?", which is that autism is the same thing as selfishness. There is also the implication that to be autistic is to be profoundly ignorant of how the world works, how people are (Randians try to live by a philosophy that might work for some alien species that is 100% rational and naturally solitary, but which does not map very well onto human lives), or even the circumstances of their own lives (later in the article he mentions how much luck is involved in even the most "self-made" person's success, and alludes to people erroneously attributing to their efforts things that practically fell into their laps by virtue of their being in the right place at the right time, knowing the right people, and being the right "kind" of person).

It seems to me that it's no accident that all these rhetorical uses of "autism" to characterize a deeply selfish person or worldview are cropping up at the same time the popular conception of autism is shifting to "someone without empathy." It seems to me that those two things are actually mirror images of each other; as long as people talk about autistic people as being without empathy, autism will be the metaphorical diagnosis of choice whenever someone wants to talk about an actual lack of empathy.

So the stereotype gets reinforced from both ends.

"Zero Degrees of Empathy" Link Roundup

I'm holding off until I've actually read Zero Degrees of Empathy (or, for the edition I'm most likely to get my hands on, The Science of Evil), but there are plenty of other people writing interesting things about it:

Lili Marlene, who lives in Australia and writes skeptically about psychology on her blog, Incorrect Pleasures, has written several posts about her thoughts on the book as she's been reading it.

Here they are in chronological order:
Just a little bit reductionist don't you think?
A very horrible story that can't be ignored
Mathematician's test score does not add up
A quick word or two regarding the Reading the Mind in the Eyes Test and the Austrian study
Professor Simon Baron-Cohen, empathy expert
Is this guy for real? Baron-Cohen's latest book is a real urban legend!

Indigo Jo has written a double review of Zero Degrees of Empathy and an earlier book on E-S Theory, The Essential Difference. (And Lisa Harney at Questioning Transphobia has enlarged on it; the comment thread on her post is also worth reading).

Rachel Cohen-Rottenberg has a very detailed post about empathy; she has also started a web-anthology of essays addressing myths about autistic people and our capacity for empathy.

On Tumblr (a platform which continues to confuse me, but which is apparently really popular), Emily posted at F*** Yeah Autism Spectrum: So I read the first chapter of Simon Baron-Cohen's new book

Qualified Candidate Barred From Job; U.S. Government Sues Employment Agency

My heart really goes out to Jason O'Dell; he and I seem to be in similar circumstances.

He recently applied for work as a lab technician in Frederick, Maryland, using an employment agency called Randstad US. Everything had been going pretty well --- Randstad had decided that he was exceptionally well-qualified for this particular job, so they "fast-tracked" his application; the company he had applied to had also expressed interest in hiring him --- until O'Dell let it slip that he had Asperger's.

When that happened, the position he had seemed about to get seemed to evaporate. His contacts at Randstad were telling him it had "been put on hold," but really they were continuing to recruit other candidates, and eventually filled the position with someone who was not Jason O'Dell.

In response to this, the U.S. Equal Employment Opportunity Commission is suing Randstad for discrimination --- in pulling O'Dell out of consideration for employment right after he told them about his disability, they violated the Americans with Disabilities Act's prohibition against employers (or employment agencies!) discriminating against qualified people with disabilities in job application procedures, hiring, promotion, pay, training, firing or any other aspect of employment. They're asking for back pay, compensatory and punitive damages for O'Dell, and revisions to Randstad's employment policies to make the kind of discrimination O'Dell experienced Officially Against The Rules.

Here is the relevant part of the ADA:

Sec. 12112. Discrimination

(a) General rule

No covered entity ["covered entity" meaning an employer, employment agency, labor organization or joint labor-management committee] shall discriminate against a qualified individual [someone who can perform the essential functions of the job with reasonable accommodations] on the basis of disability in regard to job application procedures, the hiring, advancement, or discharge of employees, employee compensation, job training, and other terms, conditions, and privileges of employment.

(b) Construction

As used in subsection (a) of this section, the term "discriminate against a qualified individual on the basis of disability" includes

(1) limiting, segregating, or classifying a job applicant or employee in a way that adversely affects the opportunities or status of such applicant or employee

... and here's a handy little page about employment law; it tells you what your rights are under the ADA, and what you can do if you think they've been violated.

The EEOC also mentions in its press release that fiscal year 2010 has been especially bad for discrimination in employment: they had 99,922 claims, of which 25,165 were disability-related. That constitutes an increase of 17.3% over the number of disability claims filed in fiscal 2009.

I hope they win their suit, and that O'Dell gets those damages ... although even more I hope he manages to get a lab job somewhere!

Autistic Woman Writes Terrible Column; Speculation About Her Capacity for Empathy Ensues

There's this woman, Penelope Trunk, who writes about climbing the corporate ladder on her blog, and in her book Brazen Careerist: The New Rules for Success. She's founded several startup companies, has worked in marketing and is now a full-time writer, focusing on career advice for young people.

She also has Asperger syndrome.

A few days ago, she wrote a column about Dominique Strauss-Kahn, the former head of the International Monetary Fund who is accused of sexually assaulting a hotel maid. In her column, Trunk advances the bizarre hypothesis that women who occupy the lowest rungs of the socioeconomic ladder, who work low-paying, menial jobs with no possibility of advancement, have greater freedom than higher-paid, professional women do to report sexual abuse by bosses, co-workers or clients.

Her notion is that someone working a low-paying job will not have the same incentive to hold onto that job that someone with a better job would have:

It has been clear for at least a decade that women who want to have a high-flying career should not report sexual harassment. I have written about this a zillion times, and before you argue with me, read the quotes from all the labor lawyers (representing plaintiffs) who agree.

The bottom line is that just about every woman who has entered the workplace has experienced sexual harassment, but the women who report it face retribution. ... [W]omen who complain about harassment generally lose their jobs in some convoluted but ultimately predictable way.
...
But, what about women who don't care if they get fired? Those women hold a lot of power in this equation.

It used to be that women with low-level jobs did not have the socioeconomic backing to stand up for themselves in the face of harassment. Today, women feel more empowered - even women in a low pay grade. And women across the economic spectrum can identify what crosses the line.

These women have nothing to lose when they report men who cross the line sexually. So the maid reported. And then, it turns out, all sorts of women in higher-up positions spoke up against Strauss-Kahn. The women wouldn't report the harassment on their own. They don't want to suffer retribution. But now there will be no retribution, so it's safe to come forward.

This is why men are going to focus harassment at the higher ranks of the corporate ladder. These are the women who have to keep their mouths shut if they want to keep climbing the ladder.

But God help the guy who harasses a woman with nothing to lose.

It's a great moment in history. Poor women are empowered to fight against lecherous men, and rich women can finally come out of the sexual-harassment closet because of it.

Matt Yglesias at Think Progress and Amanda Marcotte at Pandagon have both covered why this is astonishingly, massively wrong --- not just off, but actually the opposite of what's really true, which is that poorer women working menial jobs are more, not less, vulnerable to exploitation and abuse at work, and have fewer options for escaping or combating it. In believing otherwise, Trunk seems to have forgotten that, for some people, losing a job means not being able to pay rent, not having enough money to buy enough food, having to put off needed medical treatments or go without needed medications because they can't pay for them.

She also assumes that, if one quits a menial job, one can quickly and easily find another. This is just not true in an economy where almost one-tenth of all people in the U.S. are officially unemployed, and many more are working fewer hours than they'd like to. These low-wage service jobs are actually really competitive right now, since there are relatively few of them (since companies have mostly been weathering the Great Recession by laying off all the employees they could conceivably do without) and lots of people needing work.

There's a lot of other important stuff she leaves out, but I think the most important failing in her article is her assumption that women working low-paying jobs don't need those jobs. As a commenter on Pandagon noted, it's as if she's assuming that everyone has well-off relatives who can support them for a time, or has a trust fund or significant savings to fall back on. She doesn't seem to understand what poverty is.

Anyway, enough about Trunk. She's ignorant, naive and starry-eyed, and her good fortune and financial security have given her the (mistaken) impression that life is as easy for everyone as it has been for her.

Now, I want to talk about her critics.

It shouldn't surprise anyone reading this blog that commenters on both Pandagon and Yglesias's site have brought up her autism as a possible explanation for her failure to grasp basic economic and social realities.

From Pandagon:

Penelope Trunk's deal is that she has Asperger's and spends a great deal of time and energy figuring out the "rules" for social interaction. (Note: she is open about this and has written a great deal about it.) I got reading her because her perspective can bring some real insight into human interactions. But she can also get things dead, dead wrong.

If Ms. Trunk actually suffers from an illness which damages her ability to feel empathy, that both absolves her (partially) and leads to the next question --- why is she indistinguishable from the average conservative/libertarian?

My understanding is that while the inability to read nonverbal cues is quite acute, the practical effect of Asperger's also includes a lesser capacity for empathy, especially in relatively swift interactions.

From Yglesias's:

Trunk is wrong, obviously. But Asperger's Syndrome makes what she's trying to do here --- put herself in both DSK's and the maid's position and see who's right --- incredibly difficult. This isn't Tom Friedman telling us we gotta say "suck on that" to Iraq b/c he's a dick, this is someone with a legitimate medical condition exercising poor judgment by choosing to comment on something it's very hard for her to understand given that condition.

These comments are actually not representative of the threads in which they appear; these four comments are the only comments on both websites to blame Trunk's classism on her Asperger's diagnosis, and both threads also include other comments telling the quoted commenters that they are wrong to do so.

But it still depresses me that her diagnosis comes up at all in a discussion of why her article is wrong. One of the reasons it depresses me is because --- as the last comment I quote indicates --- it effectively bars all autistic people from participating* in discussions about workplace harassment. "Oh, you're autistic, you don't understand how normal people act." Because our "condition" prevents us from understanding other people, nothing we say about anything other people do --- even things they do to us --- has to be taken seriously. This is especially troubling when it's workplace (or school) harassment we're talking about, since autistic people are especially likely to be targeted for such harassment. (Indeed, we are often blamed for being bullied --- it's our own fault for being so weird, we're told as children.)

It also depresses me somewhat to see Trunk's excessive optimism about most people's ability to quit jobs at will, and find new jobs quickly and easily, attributed to her Asperger's rather than to her having a lot of resources at her disposal that she takes for granted, when most people with autism, when they can work, have terrible trouble finding jobs, and then holding on to those jobs for longer than a few weeks. If anything, we probably have a keener grasp than most people do of the risks inherent in quitting a job, because those risks are heightened for us.

I'd also like to point out, in two of those comments --- both written by the same person --- the use of autism as a metaphor for a self-serving political philosophy.

I've seen this once before, in an article on CommonDreams.org:

The language used in this passage --- citing "self-centered" behavior as the characteristic feature of autism, for example, or saying autistic people lack "linguistic, social, cultural or logical constraints to manage [our] lives" --- draws strong, if implicit, parallels between autism (a neurological condition) and selfishness (a moral quality).

These comments do a similar thing, with the "lack of empathy" that is so often cited as the core deficit of Asperger's syndrome. In the psychological literature on autism, the "empathy" being spoken of is usually cognitive --- we are unable to understand non-autistic people's behavior, feelings or states of mind, even though we are perfectly capable of caring about them. Yet, in the comment quoted above, the implication is that this lack of understanding also entails a lack of feeling for these incomprehensible others.

Autism is not a moral failing. Autistic people have moral failings, but they have them because they are people, not because they are autistic.

*Not in the literal sense of "You are not allowed to speak," but in the more nebulous sense of "You can speak, but if I know that you're autistic, I will attribute everything you say to your being autistic, and if any of it conflicts with what I think is true, or right, I will disregard whatever you say because your mind is diseased and mine is not."