Amy Wetherby, Red Flags, and Female Genital Mutilation

  I'm going to discuss Amy Wetherby's talk last month at the Atlanta Autism Consortium. But before I do, I need to touch on the subject of female genital mutilation.
  Specifically female circumcision.
  Female circumcision is the removal of a girl's (and I say "girl" because it is usually performed on children) outer sexual organs including, but not limited to, the clitoris. This procedure is performed primarily in certain Islamic and African societies. By removing the primary source of physical sexual pleasure, the parents and religious leaders who engage in and sanction this practice hope that the girl will have less incentive to follow their physical desires and engage in sexual activity which would bring shame to their families. Of course this is an issue that that can be looked at from many angles but for the purposes of what is to follow let's understand the essence of what female circumcision is. It is parents, in collusion with enabling authority, and justified by ideology, attempting to suppress the natural inclinations of a child so that that child will be more likely to behave in a culturally prescribed manner. The child, for her own good, cannot be left to lure of her own essential nature.
  Now, hold that thought.

  Amy Wetherby is on the faculty of Florida State University where she is associated with something called the First Words Project, which is, as the name might suggest, another attempt to push the "diagnosis" of autism to a still ever-younger age. What Wetherby is currently working on is a test that would allow a "diagnosis" of autism straight down to the toddler level.
  Starting off her talk, Wetherby put on an impressive demonstration of her own compete intellectual mediocrity. Coming off as particularly overly-needy, she spent the first few minutes all but begging for someone to collaborate with her on some future project.  Finally, we got down to why she was here: detecting autism is in the very young. To that end, the First Words Project has developed a questionnaire for parents, sample questions of which were presented in her power point presentation. Such as: Is the child interested in objects? Does he collect things? Blah, blah, blah.
  Now this would be the point where, if I had decided to pursue my usual line of questioning, I would have popped in. One slide on the power point listed autism as consisting of entirely negative traits. One single graph used the word "deficit" at least seven times. No autistic- like trait could pass without the words "warning" or "red flag." Children who didn't get the diagnosis of autism "passed" the test.
  But, it turns out, according to Wetherby, that "diagnosing" autism at 18 months is "way harder than you can imagine." To be honest, Amy Weatherby, during her talk, came across as, at least to me, borderline stupid. So I actually would have no problem imagining that almost any project that would involve a moderate level of intellectual rigor might indeed be "way hard" for someone of Ms. Wetherby's intellectual caliber.
  Wetherby then proceeded to show a series of short videos of very young children seated with their mothers in clinical settings and asked the AAC audience to play, in essence, Find the Autism. As she showed each video, she would ask the audience questions like "Is there something different about this child?" and "Are we worried?" The audience, which was, to the best of my memory, about half filled with ABA and PBS clinicians, responded like they were sitting in for a taping of Oprah. Little gasps or soft cries of "He's not looking at his mother!" were elicited with each new video.
  Now among the "red flags" that the spectators of these cherry-picked mini-movies were supposed to look for was, of course, meeting eye gaze, but also things like whether the child was "overly focused."
  "Overly focused?"
  After the meeting I asked her about this. She told me this would include a child doing the same thing over and over in an hour period of play. So, I asked if the child playing with blocks for a full hour would count as overly focused. Her reply: It depends. If the child is working on building one thing then the answer would be yes. If the same child instead spent no more then ten minutes on any individual block construction then the answer would be no. So, I guess, "over-focused" really means "focused."
  One video moment that particularly stands out: a toddler sits at a table with his mother. A "researcher" (or whatever the woman in the video purports herself to be) puts a little wind-up spring-loaded toy in front of the child to walk across the table. The child reacts with delight. Next video: It's six months later. Same kid. The SAME toy is put in front of him. Rather than react with the same wonder to yesterday's news, the kid picks up the toy and brings it close to his face, seeming to, at least to my eyes, closely examine the toy's locomotion mechanism. Little gasps of horror from the audience.
  At this point Gregory Abowd, sitting directly in front of me, turned back to me and noted that this kid had the makings of a future engineer. His comments happened to precisely mirror my own take on the matter. In fact, for perhaps the first time, our thinking seemed to be precisely in sync.
  The two of us proceeded to push back on the interpretation that a child's display of precocious intellectual curiosity should be viewed as a "red flag" for anything. Wetherby's defense was to simply state that this sort of behavior is outside the normal "baseline" for a child in this age group.
  Barbara Dunbar at this point chimed in to agree with Wetherby. The behavior displayed by the child in the video was not in accord with what a child in that age group should be doing.
  Now the Floortime Atlanta website describes Barbara Dunbar as  a "licensed psychologist... (who) specializes in assessment and treatment of young children with developmental and learning disorders. Her focus is on working with children with autistic spectrum disorders and their families" so I guess she knows what she's talking about.
  "So," I asked her, gesturing to the child in the video, "what is he doing?"
  Dunbar could only shrug that she didn't know.
  She doesn't know what he's doing.
  But she knows he shouldn't be doing it.
  Then again, maybe, just maybe, Ms. Dunbar doesn't know what the fuck she's talking about after all.
  And so it went. Wetherby noted that they tried to gauge whether the child was engaging in repetitive behavior, another "red flag." Behavior was not counted as repetitive unless they saw it three times in a row. Well, that's simply not the definition of "repetitive," an everyday word that everyday people understand. If I write a paragraph about ABA and mention "ABA" in three successive sentences that is not necessarily repetitive. If I were to thrice-use a phrase like "primal reckoning," that most certainly would be. If there's a hard yardstick for measuring an easily understood but subjectively defined word like "repetitive" I sure would like to see it. Adding an arbitrary parameter (Why three? Why not two? Or four?) in and of itself doesn't accomplish anything. In her own talk, Wetherby used the words "red flag" so many times I gave up counting and on three completely separate occasions compared autism with cancer for the purposes of making exactly the same point. Whatever else you might say about her talk, it certainly was repetitive. That doesn't make her autistic. It just demonstrates that she's a meandering and uninteresting speaker.
  According to the FSU site, one of Ms. Wetherby's area of interests is "Diagnosis of language disorders." Perhaps this faculty member of the School of Communication Science and Disorders might consider seeking a grant to study tapes of her own sub-par power point presentation skills. It might be all around win-win for all concerned.
 
  And it just kept going. If the toddler shows interest in the wobbling of a spinning plate, look out, that's a danger sign! Now I'm no child expert like Barbara Dunbar but I would argue that a wobbling spinning plate is inherently interesting. It's a process that has a beginning, a middle, and an end with myriad variations that all stay within some very confined physical parameters. And it may be the perfect introduction for a youngster to unstable systems. A toddler repeatedly spinning a plate and observing the simultaneously chaotic and systematic way that it comes to rest is probably absorbing all manner of information about how the physics of the world he finds himself in works.
  Personally, I'd rather watch an hour of spinning plates wobble to their respective stops than listen to another five minutes of Wetherby's red flag bigotry. From what I gather from her presentation, it would seem that one of the primary symptoms of autistic "regression," which must be guarded against at all costs is simple intellectual curiosity about how things work. Well, it's easy to see how Amy Wetherby could engage in such a pathologicalization since, as demonstrated by the parade of speakers to come through the AAC, curiosity is clearly outside the "baseline" of the average behaviorist and their assorted allies.
  In the end, Amy Wetherby does what she can, for a buck, to suppress the natural inclinations of the child so that he or she will be more likely to behave in a more culturally prescribed manner. For their own good, Amy Wetherby and her kind cannot leave these children to the lure of their own essential nature.
  One may argue about exactly how slicing a young girl's clitoris off morally compares with the targeting and deliberate squashing of a young's boy's budding intellectual focus and natural curiosity about how the world works. But I think its fair say that those engaged in either practice are engaged in variations of the same tyrannical theme.
 
  Simply put, they are both monsters.

  Walt Guthrie

Playing Nice (At the Feb. 11 AAC Meeting)‏

Well, it seems I need to be more respectful.
  That at least appears to be the message coming from Don Mueller, executive director of the Marcus Center.
  But I'll get to that.

   I'm not going to have a lot to say about the last Atlanta Autism Consortium meeting. This is because Dr. Leslie Rubin, from the Morehouse School of Medicine, is, by far, the most boring and content-free speaker I've heard yet at a Marcus-related event. If any of you wanted to know what year CHoA moved from this building to that building or who suggested who for what position at Marcus in what year, well, this was for you. For anyone else, it was excruciating back-in-the-day inside-baseball.

  In the course of the two hour meeting I brought up exactly two points.
  The first was in response to Rubin's question about why the rates of autism diagnoses might be rising so dramatically. Rubin acknowledged that this phenomenon might be partially explained by a broadening of definitions or an increase in public interest, but then added that there had to be more to it than that. He provided no evidence that those answers might not be sufficient in and of themselves.
  I suggested that an explanation for the rise might lay with the fact that a lot more people get richer off an autism diagnosis now than in the past. Gregory Abowd offered at this point that there was nothing unusual about that and medical professionals of all stripes might have just as much financial incentive to find a false positive as a Marcus Center employee. I  was under the impression that cancers and tumors were the sort of things that actually showed up on medical scans and other physical tests. But what do I know? Although I didn't raise it at the time, I think far better counter-analogies would be not regular medical doctors but other "experts" who preyed on whipped-up social hysteria to discover hordes of previously unknown scapegoats. Medieval witchfinders and prosecutors uncovering satanic daycare sex-cults come readily to mind.

  My second point came after about the umpteenth time Rubin suggested that everyone in the room-- "researchers," parents and adults on the spectrum alike-- should devote themselves to working hand in hand toward a common goal. I observed that of the adults on the spectrum who attend the consortium meetings, the number who support more financing for either the Marcus Center or ABA in general is precisely zero. I asked, in a tone that I think reflected the non-rhetorical nature of the question, if anyone at that meeting knew if such an individual even existed. In the brief back and forth that followed no one came out and put me in my place with a simple factual refutation: "What about Joe Blow? He's had ABA and he's with us 100 percent!"
  If the therapies of the behaviorists are so effective, where are the adults who, having benefited from them, are now advocates for these same therapies? Their absence from this debate is extremely telling. Now, to my mind, there can be at least two possible reasons for this state of affairs.
  One, as stated, adults on the spectrum who have benefited from, and are now advocates for, behaviorist methodology exist only only as hypothetical constructs. At least locally.
  Two, those who work at the Marcus Center are so lazy, or disinterested in the humanity of the children who have been in their care that they make so much money off of, that they have simply failed to keep up with any of them once they have ceased to contribute income.
  In any case, pointing out the obvious --that a single solitary adult on the spectrum had never attended an AAC meeting to support the methods of the behaviorists-- was apparently simply too much for Mueller.
 It was shortly after this brief exchange that he brought up that it was incumbent upon everyone at the meeting to be respectful of everyone else. I then inquired as to the subtext of that statement. No subtext at all, Mueller assured.
  Oh yeah, except that there was.
  After the meeting I walked up to Mueller to inquire further as to the nature of the message he had intended to send with his remark.
  Turns out it was about me after all.
  Now it is true that I have suggested that the Marcus "researchers," and behaviorists in general, don't know what they're doing. I have stated explicitly that I believe that they are engaged in fraud. I also have noted that their language towards the autistic is indistinguishable from racism. But I have always done so, within the confines of the AAC, (as opposed to, say, here where I'll just come out and say that someone like James McPartland is a douchebag for his self-described abusive treatment of socially-isolated children) in what I believe to be a respectful manner. As I have previously stated, I have treated them like the scientists I know them not to be.
  Mueller suggested that he, Gregory Abowd, and myself should have a meeting. This meeting would, I gather, based upon what was said during our very brief talk, center around what subjects I may or may not be allowed to bring up in the future. The only two subjects that were brought up by myself at this meeting were 1) the Marcus Center might have a financial interest in over-diagnosing "ASD" and 2) that no adult on the spectrum has ever come to the AAC to support the methodologies of the Marcus Center or behaviorists in general. So, I gather, this is what being respectful means to Mueller: don't bring up points or ask questions that might suggest that the Marcus Center or the behaviorist community as a whole, or in part, is either incompetent or engaged in intellectual fraud. I, and my compatriots, should sit silently at the meetings while we are called every manner of derogatory name dressed up in medicalized techno-babble. We should accept every one of their crackpot theories (even the ones that contradict each other. Oh wait, that would be all of them) as they are presented and be grateful that there are people who have devoted their lives to curing us, even if they don't seem to have a clue as to who the fuck we are.
  In other words, in this equivalent of an interracial dialogue, they are free to call us "niggers," and we are to address them as "sir."
  That, I imagine, is what Mueller wants.  But maybe not.
  We're see. In any event, I've accepted Mueller's invitation for a meeting.
  I understand that it is possible that my banning from future AAC conferences will occur at this meeting. And that's fine. The continuously-stated purpose of the AAC meetings has been to bring together all voices who have an interest in issues related to the autistic spectrum. If I am banned, or have my privileges to speak or question curtailed, then it will be clear, to my people at least, that that claim is just one more fraud residing inside the walls of the Marcus Autism Center.

Find the Science, Continued

Gregory Abowd, who runs the Atlanta Autism Consortium over at Marcus is the one member of it unafraid (eager actually) to engage in debate over the legitimacy of what the behaviorists actually do. This might be because Abowd, who teaches at Georgia Tech and directs something called the Ubiquitous Computing Research Group Group, is not a behaviorist himself.

  He takes issue with my critique of the DSM IV's definition of autism in "See If You Can Find the Science" which I also sent out over the swansa list:

"I fully appreciate the skepticism with which you view this 'definition' of autism, but I think to make the discussion truly constructive, we need to consider what other options there are for describing a phenomenon that is not that well understood."

My response:

The option I propose is simple enough. Acknowledge that autism is a fuzzy category like black, white, straight, gay, conservative or any other descriptive term we use to define and categorize people in everyday conversation. When homosexuality was a "disorder" it was left to "experts" to decide just exactly what constituted a homosexual (was it acts or inclination of some mixture of both?) When homosexuality magically ceased being a DSM-defined disorder in 1973, the term, purged of its pseudo-scientific medical connotations, did not go away. People continued to use it in the non-exacting imprecise way that people use everyday language. In the end, just who is gay or who is a real Jew (or Christian) is a never-ending conversation engaged in by communities made up of those people and those who would be part of it.
  Stripping a community or society of its ability to define itself is an act of tyranny.
  It is ultimately up to the autistic community to  engage in this debate.

  And, by the way, who is it who doesn't understand this phenomenon? We on the spectrum understand it. We live with it everyday. At least we understand it as well as you have an understanding of how you think and the assorted quirks and inconsistencies that make up your life. It would be an easy, but relatively empty, exercise to define your non-autistic spectrum breed as a mere collection of deficits and disorders (non-systemic thinking, given easily to crowd psychology) in the same manner that the DSM has arbitrarily defined the autustic. But that would be to buy into the same lazy pseudo-scientific clap trap that the intellectual mediocrities at the Marcus Center and elsewhere engage in every day.

  In his reply to mine, Abowd asks that if the autistic community gets to define what they are, then do cancer patients get to define if they have cancer. Variations of this question come up all the time when you are arguing that the DSM's (any and all of its editions) definition of autism and its variations and subsets are empirically unverifiable confabulations.

My response:

Cancer simply is when cells go into uncontrolled growth. It is a clear and easily understood term. It is a condition that is subject to empirical verification.
  A discussion of how we recognize disease as disease might be a fascinating one were we to go down that path. Certainly there is a teleological aspect to it. The practitioners of the science of medicine, both past and present, are capable of conceiving of the body in it's platonically idealized form That which interferes with the various parts of the body achieving their purposeful functions is disease. This intellectual shortcut works pretty well because we, as a species, are in rough agreement as to both the nature and the desirability of possessing as fully functional a body as possible.
  The application of this same intellectual shortcut to the analysis and classification of behaviors, thoughts, inclinations, beliefs and other aspects of the mind is, on the other hand, a disaster. There is simply no reasonably objective method, nor can there be, for constructing or imagining a platonic ideal for acceptable and unacceptable manifestations of the mind. Time and time again we see that these models of normality are merely reflective of the specific values and prejudices of those constructing the models, hence the inclusion of so many sexual variations as "disordered" in the early editions of the DSM, and the gradual removal of them as the views of society towards sexual deviation has liberalized over the decades.
 

Addressing the Crank Room

I was asked last November to speak, along with several others of differing viewpoints,  for five to ten minutes to the Atlanta Autism Consortium about my perspective on the push to get an autism insurance bill through the Georgia legislature this session. My minority opinion, presented to the behaviorist-dominated room at the Marcus Center, was that anything that can be done to keep another buck from going to the behaviorists would definitely be worth the effort. This is the text of what I said:

My name is Walt Guthrie. And I'm an advocate for those on the spectrum.

This year, I had the distinct privilege of working with Carmen Allen, and others, to kill SB 161 in the Georgia Legislature.

Next year, should the participants in this room succeed in introducing an insurance bill into the state assembly, I look forward to the opportunity to participate in the killing of that as well.

It is not that I object to children who might very well be in need of  a specialized education or specific therapies receiving financial assistance to meet those needs. I do not.

It is, rather, that I know that any bill that this collection of organizations --primarily Autism Speaks and the Marcus Center -- has any hand in either crafting or supporting, will be weighted primarily, if not in its entirety, towards ABA and other similar dehumanizing pseudo-scientific behavorial applications.

Autism Speaks is an organization loathed by large sections of the autistic community for their efforts to equate the autistic spectrum with cancer and AIDS. In ad after ad and billboard after billboard, they paint a picture of the autistic experience in terms of pure negativity, even assuring that autistic children will be responsible for their parents' future divorce. Their work  recalls the propaganda of Julius Streicher in the Third Reich, depicting Jews as rats and vermin, laying the moral groundwork for their
extermination.

Autism Speaks, in their support for genetic research, suggests they are inclined towards a somewhat softer genocide: Prenatal testing that will result in a genetic search and destroy that, once the markers for autism have been established and located and the tests drawn up, will result in a "cure" for autism by simply eliminating future generations of autistics from being born.

THESE are the people that the Marcus Center wishes to partner with.

The Marcus Center would have us believe that the autistic insurance teat should be doled out primarily for the behaviorists to suck on. Because, after all, ABA is "science."

In all the time that I have come here I don't believe that I have ever encountered any science, or found anyone who would actually qualify as a "scientist." They use words like "disorder" and they don't know what they mean or why they use them. Ask them and they might mumble that the DSM "says" it is. But they can't tell you why. To paraphrase the creation-scientist: "The DSM says it, I believe it, and that settles it." A few, like James McPartland, admit it's definitional. It's all made up. This is the foundation of their whole existence and they just made it up. Out of thin air. 

They focus on differences and transform them, with a wave of the hand, into deficits. If autistics do surprisingly better than was expected on a test measuring this skill or that brain function then this becomes the brain somehow "compensating." They put laser pointers on children to find out where they're looking. If regular kids look at eyes and autistic kids look at mouths then the conclusion is naturally that looking at mouths is a trait that must be corrected. Why? Because being on the autistic spectrum is definitionally a disorder so the behaviors exhibited by those on the spectrum must all be symptoms of that disorder. Nothing autistic can be good.

They make it their mission to change behavior because, in their narrow world, behavior is all that can be measured and measurement is all. They make no attempt to empathically understand the interior emotional and intellectual world of the autistic. In the words of Dan Crimmins that would be all "touchy-feely."
As a result, I'm sure, of such a philosophy, I regularly have such encounters here as one Marcus Center employee comparing her working with children on the spectrum to the training of dogs.

Their lack of intellectual curiousity here is stunning. They talk endlessly about why autustics do the things they do, such as avoiding eye contact and yet when queried if they actually asked those on the spectrum why they don't make eye contact, they'll respond that THAT wouldn't be science. Imagine. Asking people why they do what they do is methodologically off limits. No, children will instead have their behavior coercively altered based on theories derived from cherry-picked data designed to fit the behaviorists' bigoted preconceptions.

If the behaviorists in this room were real scientists, they would be incompetent. Some of my colleagues in this fight believe they ARE incompetent. I believe, on the whole, that they are, politely put, engaged in willful misrepresentation. But whether their lies are to themselves or to the public at large, the children on the spectrum deserve better than to have their lives entrusted to them.

The people in this room, specifically  those associated with the Marcus Center, do not have the best interests of the autistic community at heart. They are engaged in fraud at multiple levels. Whatever legislation they concoct to further enrich themselves should, and will, be met with ...skepticism.




By the way, I'm not very popular at these meetings.