Autism Hearing Transcript: Dr. Alan Guttmacher

Before the first panel of expert witnesses started to speak, Rep. Issa spoke briefly to take care of some procedural business and to swear in the witnesses: 

Still image of Rep. Darrell Issa, taken from this video

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I thank the gentleman [referring to Rep. Kucinich, who has just yielded back the floor]. 

On all sides, I now ask unanimous consent that our colleague from New Jersey, Mr. Smith, be allowed to participate in today’s hearing. Without objection, so ordered. 

I will announce that if any individuals would like to be in a little more comfortable situation, we do have an overflow room, so just let our staff know, they’d make sure that, if they gave up their seat here, that they’d be able to be in the overflow room. It may be more comfortable for some of our guests.

I now turn to our first panel. The distinguished Dr. Alan Guttmacher is director of the Eunice Shriver National Institute of Child Health and Human Development at the National Institutes of Health --- and I actually knew the namesake of your organization, during her time --- and Dr. Coleen Boyle is director of the National Center on Birth Defects and Developmental Disabilities at the CDC.

With that, pursuant to the requirements and rules of this Committee, would you please rise to take the oath

(pauses while Drs. Guttmacher and Boyle stand up)

Raise your right hands.

Do you both solemnly swear or affirm that the testimony you are about to give will be the truth, the whole truth, and nothing but the truth?

(Drs. Guttmacher and Boyle nod their heads)

Thanks. Please be seated, and let the record indicate both witnesses answered in the affirmative.

You are important witnesses and we will not stop you if you go slightly over five minutes, but we do have a large second panel and we would ask that you bear in mind that all of your opening statements and additional extraneous material you may choose to submit to us will be placed in the record, so if you abbreviate or go off-message, it doesn’t change the official record for you. And, with that, Dr. Guttmacher, you are recognized.
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Still image of Dr. Alan Guttmacher taken from this video

And here is Dr. Guttmacher's speech:
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Thank you, Mr. Chairman.

I am also a pediatrician and medical geneticist, and a member of the Interagency Autism Coordinating Committee, or IACC, re-authorized most recently by the Combating Autism Reauthorization Act of 2011.

Let me thank the Congress for its continued support of research and other activities regarding autism spectrum disorders. That support has made possible remarkable advances in autism research and helped to better identify and meet the needs of people with ASD and their families.

ASD includes diverse conditions that share distinctive styles of, or impairments in, communication skills and social interactions, as well as restricted, repetitive, or stereotyped behaviors. The combination and degree of impairments vary, creating an array of conditions that range from what many would see as normal to significantly disabling. Two decades ago, ASD was thought rare. Today, with CDC’s latest prevalence estimates, it is a national health priority.

The IACC plays a pivotal role in bringing together federal agencies, nonprofit organizations, and the public to identify priorities and strategies to address them. It includes individuals on the autism spectrum, parents of children and adults with ASD, other advocates, researchers and service providers, and officials from federal agencies. The IACC welcomes public comment at all full committee meetings, and regularly invites written public comments and holds town halls. Thus, a diversity of perspectives on ASD informs IACC activities and recommendations. It is a committed group; while the law requires two meetings a year, the committee and its subcommittees meet as many as seventeen times a year. The law charges the IACC to update a strategic plan annually. We are drafting --- as always, with autism community input --- a 2012 update that includes the latest advances, remaining gaps, and emerging needs in autism research. The plan encompasses priorities from fundamental biology to services across the life span.

Over the past decade, autism research funding has grown substantially. The NIH leads federal research in ASD, investing $169 million in fiscal year 2011, three times more than ten years ago. In 2009 and 2010, $122 million in additional American Recovery and Reinvestment Act funds were also invested.

As Congress has emphasized, early diagnosis and intervention are critical. This year, NIH-funded researchers identified brain pattern aberrations as early as six months of age in infants who went on to develop autism, the earliest such changes ever recorded in autism, and one of a number of recent findings which suggest that the factors causing autism may operate very early in development. Last year, researchers demonstrated that doctors’ offices can use a short questionnaire to screen inexpensively for ASD at the one-year well-child visit. Another promising diagnostic tool, a one-minute test that detects eye-gaze patterns specific to autism, had nearly 100% specificity in infants as young as fourteen months.

But early diagnosis is valuable only if effective interventions are available. Recent ASD trials have validated early interventions to improve health outcomes and quality of life. For instance, a recent behavioral intervention study showed improved IQ, language, and social development in young children, and progress is also being made on interventions for adults. A recent study showed, for instance, that for the many adults with ASD who have impaired ability to recognize faces, a computerized training program improved facial-recognition skills.

Many recent advances have come from NIH's Autism Centers for Excellence program, which currently supports nine centers and networks across the country, with two additional awards expected in 2013. The research covers a variety of topics aligned with the IACC strategic plan, including nonverbal ASD, genetic and environmental risk factors, potential treatments, and determining why ASD is five times more common among boys.

We do not know the causes of ASD, but recent findings highlight the need to focus on both environment and genetics. NIH and CDC established large research networks to collect extensive data on environmental exposures and health outcomes, and conduct powerful analyses to identify factors that contribute to autism. Those networks explore possible causative factors in the environment before, during, and after pregnancy. Just this week, one of these networks published a study that suggests prenatal and early-life exposure to car emissions is associated with autism.

On the services front, HRSA has invested substantially in improving physical and behavioral health of people with ASD, practitioner training and service provision. In fiscal year 2012, Congress appropriated over $47 million to HRSA for autism and other developmental disorders. This supports 43 interdisciplinary training programs which provide services and training to 41 states, and include autism intervention projects for underserved populations. Federal agencies also use public-private partnerships to maximize our work, such as NIH’s National Database for Autism Research, which coordinates with other autism data repositories to enhance researchers’ access to data.

Programs like these, that involve collaboration with patients and families, bring together hundreds of researchers and clinicians with tens of thousands of people nationwide affected by ASD. The Administration on Intellectual and Developmental Disabilities, with help from several nonprofit organizations, supports the Autism Now project, offering a call center, web-based clearinghouse for resources and twice-weekly autism webinars. The NIH-supported Association for University Centers on Disabilities is improving early identification of autism through 25 Act Early ambassadors who train doctors in identifying, diagnosing, and managing ASD.

In conclusion, since the establishment of the IACC, a wide variety of research, service, and education expertise have come to bear on autism. Research is rapidly translating into practical tools for use in the clinic and the community. Federal agencies are coordinating efforts to identify best practices to support the lifelong health, education and employment needs of people on the spectrum.

Thank you for this opportunity to provide testimony on such an important topic. 
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(end transcript)

You can see the Strategic Plan he talks about here. It is structured as a list of seven questions for the IACC to use as guiding principles in deciding which research projects to fund. In each annual update to the Strategic Plan, they list what research has been done relating to each question, and what gaps remain in their knowledge.

These are the seven questions, with a little more explanation on the ones I think are vague or overbroad:
1) When Should I Be Concerned? - developing new diagnostic tools, especially for use at younger ages, and improving existing ones

2) How Can I Understand What Is Happening? - fundamental biology research, including topics like brain structure, brain activity, gene expression, animal models, the role of glial cells, and how the various genetic mutations that have been found to be associated with autism affect brain development and/or synapse formation

3) What Caused This to Happen and Can It Be Prevented? - looking for factors that predispose a person to develop autism: genes, environmental exposures, characteristics of the parents that aren't necessarily genetic (e.g., age, epigenetics)

4) Which Treatments and Interventions Will Help? - evaluating early behavioral interventions, various kinds of training or therapy for older children (e.g., cognitive behavior therapy**, social skills training, mindfulness training), and of course drugs (blargh!)

5) Where Can I Turn for Services? - looking at disparities in access to diagnostic services and therapies, and at quality-of-life issues like wandering, restraint and seclusion***, and caregiver stresses

6) What Does the Future Hold, Especially for Adults? - developing diagnostic tools for adults, determining prevalence of autism among adults, and looking at quality of life among autistic adults

7) What Other Infrastructure and Surveillance Needs Must Be Met? - trying to make it easier to do the kind of research they want, by making it easier for different research teams working on similar problems to pool data

Also, looking at the bibliography they have at the bottom of this page, it looks like the study he mentions dealing with "prenatal and early-life exposure to car emissions" is this one.

*I learned a new word. It means "not autistic."

**I am confused about that; I thought cognitive behavior therapy was what you used to try and overcome distressing, irrational or self-defeating thoughts, like you get when you have OCD or depression. I'm not sure how it could be useful to an autistic child, unless maybe it's supposed to help them overcome their need for rigid routines or deal with sensory overload better. I could see either or both of those working, maybe.

***I'm immensely happy that people in the government know that restraint and seclusion in schools is a problem! All this time I'd been thinking it was just activists and parents who knew that and were fighting against it.

I Am Spartacus! You Might Be Spartacus, Too

So the Judge Rotenberg Center has been in the news again, this time because of an article in New York magazine about Andre McCollins, a young man from Brooklyn who had been sent there in 2001, when he was sixteen. His mother had sent him there because she thought it looked like a pleasant place, with dedicated and competent staff, where he might learn to control the rage attacks he sometimes had. 

Here's the part of the New York article where she talks about what motivated her to enroll him there; it very much gives the impression she didn't know how brutal the disciplinary regime was going to be:

She called the Board of Education for help finding a new school, and an employee told her about the Rotenberg Center. Stepping inside for the first time, Cheryl [McCollins] was dazzled by the décor. There was nothing institutional about this place; the carpet felt five inches thick. "I thought the place was beautiful," she recalls. "I thought these people really took pride in what they did." She loved that residents lived in lavishly decorated houses -- not dorms. The boys wore button-down shirts and dress pants. And there were surveillance cameras everywhere; she couldn't imagine a better way to ensure that Andre wouldn't be victimized again. 

School officials told her about their program and explained how the electric-shock device worked. The staffers showed her a video, too, of other students who'd been hooked up to the GED ["Graduated Electronic Decelerator," the name for the shock device] and appeared to have been completely transformed by it. "I was so excited," she says. "I was like, 'He's going to be cured? This can really stop all those behaviors, the aggression? And he won't break up my furniture, he won't fight?' 'Yes, this device does it.' I was like, 'Wow! You're kidding! Why didn't anyone tell me about this before?'"  

Twenty months into his stay there, Andre McCollins was strapped down and shocked repeatedly for a period of seven hours. The way punishment at the JRC works, they have a list of "behaviors" targeted for each person. Whenever the person does something on the list, they get a shock. Andre's list apparently included such things as screaming and tensing up his entire body, which he did throughout his seven-hour ordeal.

I have to say now that I really, really identify with Andre, even more than I normally identify with the victim in such cases of abuse of disabled children or dependent adults. Andre and I share several things: we're the same age, both born in the year 1984 (poor, poor Andre, he has seen the inside of Room 101), both diagnosed with a pervasive developmental disorder in early childhood. 

Most importantly, we share a pattern of behavior.

The "full-body tense-up."

Obviously, I'm not Andre and I can't tell you what's going through his head when he tenses up his entire body, but I can tell you what it's like when I do it. 

First, some background: though I can speak fluently, I can really only do it when I'm not doing anything else. If I'm intent on something, I won't answer you if you speak to me. I probably won't even acknowledge you until a few minutes later, or until I can tear myself away from whatever it is I'm doing. Especially if I'm doing something mentally taxing, especially something nonverbal and mentally taxing, like math, I may need to wait a few beats to remember how to speak: what the words are, how to put them together in ways that make sense. 

I don't have to be doing hard or creative work for this problem to arise: physical pain and emotional stress are also mentally taxing, and also effectively put words out of my reach for a while. 

As such, my primary response to fear or pain has never been to vocalize. Most of the time it just doesn't occur to me. I react with my body instead, stiffening my posture, recoiling back and tensing every muscle simultaneously. (Sometimes when I'm in pain I also make a hissing noise, but not always). This is what I do whenever anyone touches me. I have reacted that way to touch since I was a baby: my mom says I used to stiffen up in her arms when she tried to hold me. 

It is, you might imagine, a completely involuntary reflex.

So, when I got to this part of the article (TRIGGER WARNING) ---

Usually after Andre got a shock and was restrained, he'd calm down, but on this day he only got more agitated. The more upset he became, the more he tensed up his body -- and the more he tensed up, the more shocks he received. Between 10 a.m. and about 11 a.m., the workers shocked him fourteen times. Each press of the button delivered a loud, high-pitched alarm -- informing employees the shock had been delivered -- while Andre's cries echoed down the hall.

"No, don't do that!"

"I'm sorry. Sorry. Sorry." 

"I won't do it again."

"No, please."

"Stop! Stop! For real!"

"Help me! Help! Help!"

Employees came and went throughout the morning and into the afternoon. They attached two more electrodes, so Andre had five total: on both arms, both legs, and his torso. Following the usual protocol, they tested the batteries on his shock device; rotated his electrodes so they wouldn't leave marks on his skin; offered him water. They studied his "behavior recording sheet" to figure out exactly what behaviors they were supposed to punish. And they documented each shock with the reason it was given: "Scream" or "Tense Up." 

Hour after hour went by and nobody knelt down next to Andre to try to calm him. Attention was considered a reward -- and a student who's exhibiting "targeted behaviors" is not supposed to receive any. When the staffers did speak to Andre, they were required to follow a script, like a case manager did at 1:25 p.m., when she pressed the button for shock eighteen, then said: "Andre, no full-body tense-ups." If any of the workers thought these shocks were excessive, they kept it to themselves. They all knew that if they didn't shock a student when they were supposed to, the phone in the classroom would ring and there would be a monitor on the line ordering them to press the button. 

--- I felt horror, not only at what they were doing to him, but also because they escalated it whenever he physically reacted to the pain. When you realize that, and let it sink all the way in, you see how easily they could have killed him that day. The perverse logic --- tensing up his body (showing fear and pain) is bad, so we will shock him (make him feel fear and pain) whenever he does it until he stops --- reminds you of other no-win scenarios, like the witch trials where they would determine an accused witch's innocence based on whether she sinks or floats in water. If she floats, she's guilty, and her accusers have grounds to kill her; if she sinks, she was innocent, but she's dead anyway.

By now, you're probably asking, "Why is this woman* going on at such lengths about her feelings, and her weird stiffening-up reflex? What does any of this have to do with Andre McCollins?" 

That's a fair question --- I'm not Andre, and I don't have any better idea than you do what he was thinking or feeling on that day. But because of all the things I do happen to have in common with him, I get a strong sense of "there but for the grace of God random chance go I" from his story.

I also believe there's a very strong tendency for non-disabled people to "other" people like Andre McCollins --- they might be horrified at what happened to him, but at the same time they know how impossible kids like him can be. They're aggressive. Violent. They can't be reasoned with. They're a "they," never a "we." People might think they ought to be treated more gently than they are at the JRC, but they have to be put somewhere, controlled somehow, ... don't they?

That's why I have made this post so personal. I'm not Andre, but I share some things with him, and more than anything I think people need to see articles from people who are like Andre in various ways saying, unambiguously, "THIS IS NOT OKAY. IT WOULD NOT BE OKAY IF YOU DID IT TO ME, AND IT IS NOT OKAY THAT YOU HAVE DONE IT TO HIM." If I come across anything Andre himself has written, I will link to it.

*Bitch, to the uncharitable. Cunt, to the vulgar. Perhaps "mewling quim," if you are Loki.

Born This Way

Some book I read a long time ago --- it may have been Steven Pinker's The Blank Slate --- maintained that, in the US, conventional wisdom has swung back and forth on whether differences between people that show up in adulthood have been present since birth, or whether they are acquired during childhood and adolescence.

It's usually intelligence that gets discussed in this way, almost always in the context of racist, sexist, or otherwise inequality-justifying theories about some groups being naturally smarter than others, but there's been a similar periodicity in thinking about other things, like personality traits. (Gender differences in cognitive style, interests, and personality are some of the things that are now widely believed to be present at birth; see Cordelia Fine's book Delusions of Gender for a lot more about these ideas' ubiquity and the still-ambiguous nature of the evidence they're supposed to be grounded in).

Right now, I want to talk about how this idea has gotten established in two different subcultures to which I belong: the autism community* and the gay community.

Autism and homosexuality have somewhat similar recent histories in US culture: both either are, or have been, considered mental disorders, both were thought in the 1950s and early '60s to be caused by some warping of the normal bond between mother and child (either, as with autism, too much distance between them, or with male homosexuality, not enough), and papers from the 1960s, '70s and '80s document various attempts to "treat," with aversion therapies that would now be considered abusive, children showing signs of either one. (One researcher even worked on both projects: O. Ivar Lovaas, who has done famous, if controversial, work adapting Applied Behavior Analysis (ABA) for use with autistic children, has also co-written several articles about "feminine boys," and using ABA to normalize their behavior).

Homosexuality was removed from the DSM in 1973, but there are still people who consider it (or anything deviating from straight, married monogamy, really) a pathological condition, and therapists who specialize in trying to turn gay people straight.

In contrast to that idea --- that gay people can change, and therefore should change --- the gay-rights movement has embraced the idea that sexual orientation is inborn. (And most mental-health professionals, including groups like the American Psychological Association, the American Psychiatric Association, the American Counseling Association, the National Association of Social Workers, and the American Medical Association, pretty much agree with them that no sexual orientation is inherently pathological, and that you can't change a person's sexual orientation through therapy).

The picture is somewhat different for autistic people. Not only is autism still considered a disease, and a pretty serious one, by almost everybody, but the idea of innateness, when it comes to autism, doesn't have the same implied corollary of "... and therefore you should accept us the way we are" that it has in reference to sexuality.

No, the shift from "psychogenic" to "biogenic" theories of autism happened for two reasons: first, and probably most important, the evidence (what little there was in the early '60s) didn't fit well with the psychogenic model**, and fit better with the biogenic one; another factor was activism by parents, who were fed up with being blamed for their children's condition, and who called for more research into potential biological causes.

Here, Boston University law professor Daniela Caruso, who has written an article on the history and legal impact of autism advocacy in the US, describes the relationship between the nascent field of biomedical research into autism and the beginnings of the US's major autism-advocacy groups:

It was only in 1964 that Bernard Rimland put forth an alternative explanation of the syndrome, based not on psychodynamics but rather on neurobiology. In 1965, Rimland founded the American Society for Autism (ASA) which is, to this day, a major center of advocacy.

Following Rimland's work, activism in the name of autism began to flourish thanks to both grassroots efforts and power houses. Some groups - most visibly Cure Autism Now (CAN) and the National Alliance for Autism Research (NAAR) - coalesced around genetic research and investigation of toxic substances potentially related to the surge of autism. It is no coincidence that such movements emerged in a context of burgeoning environmental activism. Many other capillary initiatives focused instead on the reality of living with autism by developing information centers for parents of newly diagnosed children, and starting awareness campaigns aimed at educating the public about this poorly-understood phenomenon.

(See also: this post, which discusses another article on the history of autism advocacy in the US. I also found another recent article about the role of parent activism throughout the history of autism, but I can't get at the full text of it).

I also found this snippet in Rimland's book itself (that part of it I could see on the Internet, anyway; I don't own the book), discussing why he thought so many researchers were reluctant to consider the possibility that autism had a biological basis:

In discussing the obvious prejudice against the hereditary viewpoint, Nolan Lewis (1954) points out, "It would seem that most of the prejudice against genetic inheritance stems from a feeling in the realm of wish fulfillment, based on the idea that acceptance of genetic factors would create an attitude of therapeutic hopelessness." Williams (1956) cites this point among others in his attempt to penetrate the prejudice against heredity. He notes that hopelessness is by no means justified by the evidence, and cites the ready correction of diabetes, phenylketonuria and hypothyroidism as examples.

So, that's kind of interesting --- that, at the outset, there was reluctance to adopt a conception of autism as innate and biologically based because of worries that that might mean it was impossible to eradicate through treatment --- but the answer to that wasn't, "so let's not try to make them non-autistic, let's just try to integrate them into society to the best of our, and their, ability", it was "don't be silly, of course we can make them non-autistic!"

I'd also want to point out that the two competing narratives of autism came from the same source: medical professionals, whether psychoanalysts or biomedical researchers. This is in contrast to the two competing narratives of homosexuality, one of which came from medical professionals and the other of which came straight (heh) from the people they were trying to describe. It wasn't until much later that autistic people's own viewpoints were even known to exist, much less taken into account by medical professionals and policymakers.

So, while as far as I know most autistic people do think they were born autistic, that idea doesn't have the same liberatory subtext for autism that it has for sexual orientation. (Indeed, the switch over to a mainstream view of autism as innate and biologically based had already happened when research into "extinguishing" autistic behaviors was at its peak.) The biggest thing it did was to free parents from guilt at having caused the autism, which is important and was definitely needed, but it left the position of the autistic people themselves unchanged.

*I'm using that phrase --- instead of "the autistic community" --- because I am mostly talking about parents. I've made this distinction before: the autism community, which includes parents/caregivers, healthcare workers, autism researchers, and educators; and the autistic community, which is the autistic people themselves. Sometimes the latter group is included in the former, but mostly it is not, and sometimes the two groups are at odds with each other.

**See Chapter 3 of Rimland's 1964 book, Infantile Autism, for a discussion of what those findings were and how they conflicted with the psychogenic model of autism.

Why Are So Many Awesome Bloggers Named Amanda?

Seriously, it seems like a whole lot of wonderful feminist and disability-rights bloggers have that name.

There's Amanda Baggs, of course, autism/neurodiversity/anti-oppression blogger extraordinaire; she and Michelle Dawson were the first online writers I ever read, and if anybody can be said to have inspired me to do online writing, it's probably those two.

There's also Amanda Marcotte, whom I love for combining feminist blogging with atheism, skepticism and Bad-Science debunking; Amanda W. of Three Rivers Fog, whom I mostly read on FWD/Forward; Amanda Hess, who writes The Sexist; and now, most recently, I find Amanda Forest Vivian, an autistic American college student living in England, who wrote this amazing post* about an ABA school she interned at over a summer, where the staff were directed to try to stop students from stimming, or from being weird in the most harmless of ways:

...I started out thinking: wow, ABA is so cool. I've heard negative things about it from other Not Really Autistic people, but who am I to talk about what these Really Autistic kids need? They can't even talk. They might bite themselves or something. What the hell do I know about that?

And then I met Danny and the other kids in his class. High-functioning kids. Verbal kids.

Tony, who had been nonverbal a few years before, was incredibly hardworking and sweet. When he went into the school director's office and turned out the lights as a joke, I laughed, but she said, "Tony. Look at my face. How do you think that made me feel?" She stood there looking grim until he apologized.

James was stressed out and upset; one of his teachers leaned towards him, staring
fiercely into his eyes, talking with cold, strained-sounding words, the kind of voice I called "static" when I was a kid. James looked scaredly back at her, wriggling his hands around in his lap. "James," she said. "I know you're upset. But what you're doing with your hands looks silly." This boy, all the tension in him being channeled into something harmless, something she had to look under the table to see. His tension was silly. His discomfort was an inconvenience. He was eight or nine years old.

And Danny with his words. ...

Danny just liked words. When he was using his special words, the weird words he scrounged for or made up himself, he would find himself jerkily hopping across the room, speaking in a squeaky voice, his small face tense with excitement. "Presentation" was a weird word for movie, "document" was a way to talk about the letter he had typed on the computer for his parents. "I went to the barber," he said when I commented on his newly short hair, and then, with a rush of joy, "but I like to call it the hair shop!"

I like words, too. It was hard to watch Danny's teachers nudge him, sit down with him, say, "Danny, the word 'presentation' is a little weird; you need to say 'movie'." It was hard to watch the way they looked at him, pointedly, until he stilled his hopping and lowered his voice to a more standard pitch. When Danny found out my middle name is Wood, he completely tripped out on it, hammering pretend nails into my stomach and giggling, "I'm gonna build something out of you!" "Danny," a teacher said, "Don't be weird. You and Amanda were talking about names."
...
So from specific to general, from Danny to James and Tony, to Max and John. John's teacher made him walk, in stiff, clean steps, and if he started doing anything that looked like skipping or jumping, she grabbed his arm, said "No," forced him again and again. Max liked to move his arm in circles while he was watching TV, so he was hauled off into an office, pushed down into a chair, had mouthwash forced into his mouth until he cried. They told me they were narrowing it down, he was moving less and less. Max and John didn't talk. James and Tony didn't talk as well as I do. But I move too much, and I move wrong, especially when I was a kid, and in that school I saw what they do to kids who move wrong.

While I am not categorically anti-ABA --- I think it can be a valuable teaching tool, since it breaks down complicated tasks and skills into discrete, simple components --- that post (like this older post of Chaoticidealism's) does a great job of showing how some uses of ABA (yes, even without aversives) can be cruel and harmful.

In a Pedantic Linguistic Aside to this earlier post, I explain why I hate the common use of "learning" or "education" to describe methods that are essentially authoritarian in nature:

While the mental and behavioral adaptations people make to survive in a prison/institution environment ... might be called "learning," in the Skinnerian sense of that word, they also tend to sabotage a person's capacity for any other kind of learning. You get really good at surviving that hostile environment, but the price you pay is that you lose those parts of yourself that don't help you do that.

I think this also happens to kids in really intensive ABA programs. You lose initiative; you become afraid to try something before you've been told how to do it, because you're used to the teacher/therapist/whomever criticizing your attempts, telling you "No, that's wrong" whenever you do something that differs even a little bit from the response they're looking for.

So, I think that, since there is a significant cost to the kid who undergoes such training (in time if nothing else --- how're you supposed to have a childhood if you're in therapy for forty hours a week?), parents considering an ABA-based school or camp or other structured activity should ask themselves what their kid is likely to get out of it. Will they master important motor, executive, social, emotional or coping skills they've been having trouble picking up on their own? Will those skills help them become more independent (or, if you raise a skeptical eyebrow at the "independence" ideal, more productively interdependent)? Will your kid actually get something out of it that ze can use, or are you just hoping to make hir look more normal?

*Thank you, Sarah, for linking that post; I wouldn't have found it otherwise!

Link Roundup, Feminism-and-Disability Edition

To take a bit of a break from all the long, involved thinky and researchy posts I've been doing lately, I'm just going to link to a few things I've seen around the Internet recently and been blown away by.

First, FWD/Forward, an awesome new blog that deserves lots of attention, has been running a series of posts on ableism in language. Each post in the series deals with one word or phrase, like "lame," "vegetable," "retarded," "cretin," or "hysterical."

Also at FWD/Forward, Amanda W. of Three Rivers Fog has enlarged on this older post of AnneC's, "Conceptualizing Autism," to show how it can be applied to all disabilities.

I also discovered FWD/Forward contributor Meloukhia's blog, This Ain't Livin', and really liked these two posts: "Default Settings," about the gender binary, cissexism and compulsory heterosexuality, and "How to Evaluate a Source of Information."

Elesia Ashkenazy of Aspitude! has a very interesting interview on her site, with an anonymous former behavior analyst who voices some problems ze has with ABA:

One day, I was sitting with one of my favorite clients. He was the sweetest nonverbal foodie (he ate everything) who smiled often, and listened well. We had just gone through his set of verbal training programs, and we were having a relaxing break. He was stimming [ex.: finger flicking/rippling, humming, rocking, spinning] on a musical toy and he began hyper hand-flapping. My job was to click each hand flap and *reset* his hands every time. I sat back in realization and wondered to myself: is this treatment truly helping him to become independent? Will he be institutionalized for his entire life? Why does it matter if he hand flaps? Will he find love in his life?

During this rush of emotions, it was like I saw a film reel pass my eyes, and I could see my client sitting in a home twenty years into the future, having never been given an opportunity to grow into his full potential. He had been stunted by diagnosis after diagnosis, prescription after prescription, and treatment after treatment.

How do we expect to *socialize* someone if we never give them a chance to interact socially, and we treat them as if they are rehabilitated animals at a nature center of some sort?

How, indeed. (Though I would argue that animals, too, should be free to engage in whatever odd behaviors they like as long as they aren't hurting anyone!)

Finally, via Shakesville, a wonderful article from Newsweek.com about Dr. Marci Bowers, who does reconstructive surgery, free of charge, for women who've had their genitals mutilated.

"...[Y]ou cannot charge a fee to reverse a crime against humanity," she said. "Sexuality is a right."

Dr. Bowers is transgendered, and she brings up her experiences with transitioning in the video clip, when she's talking about what led her to start doing this work.

EDIT: There's one more awesome thing I read recently, that I forgot to include: IOZ has a thought-provoking response to this New York Times editorial, in which he raises some really important, hardly-ever-asked questions about the nature of the American economy:

... [N]o one seems much interested in the fact that an industrial economy is necessarily pyramidal, that not everyone can be an inventor (or innovator, as goes the preferred neologism) or CEO. You know, even in the Imaginarium of Doctress Rand, it is taken as given that the Atlases of the world must at some point employ and direct the debased lumpenproletariat: there are no illusions that every man is a genius. ...
...
You cannot run a society of three hundred million people by requiring that each either invent the iPod or remain broke forever. Which rather brings up a tangential but dearly held point for the whole gang here at Who Is IOZ? Namely:

You cannot run a society of three hundred million people.

(IOZ is also probably among my favorite prose stylists in the blogosphere, after the inimitable Twisty Faster).