On Absurdly Poor Criticism And Advocate Misconduct, Part One

On September 14, 2013, exactly a month before I started writing this post, I was contacted by a colleague who expressed an interest in changes in behavioral practice since Lovaas's original methods and models of clinical treatment.

During the resulting exchange, I attempted to explain a variety of things related to behavior analysis, ranging from how ABA is not a treatment method to the relationship between ABA and PBS (the short version is that PBS is a brand-named philosophy regarding how to go about conducting and using ABA research). I also provided her with a number of assorted articles and writings on the subject, including a piece of my own work which acted as an overview.

I ended the exchange on something of a positive note, hoping that the information would help. The positive note, however, did not last.

This is what she wrote... or, at least, the currently-published version. There has been a rather spectacularly intellectually dishonest edit in the interim. It's, to put it mildly, an extraordinarily poor critique. The arguments are, by and large, spectacularly off-base, and her abuse of my writing is glaringly obvious (if not as much so as before the edits).

That said, I should probably discuss what this means and why it's a problem before I get into a detailed critique of the piece itself.

Contrary to what some people apparently believe, saying that a critique is poor does not mean that one disagrees with its conclusions or that the critique does not deal with real problems. It is saying that the critique misidentifies the issues involved and/or argues from a position of misunderstanding or prejudice.

In this case, the author is attempting to argue that all forms of applied behavior analysis are inherently unethical -- a very, very strong conclusion, one that simply does not follow from the evidence (such as it is) and arguments (such as they are) that she presents. Saying so isn't defending ABA, and certainly isn't excusing, justifying, or apologizing for the assorted abuses with which people have valid complaints.

This is important for several reasons -- not the least of which is that poor criticism serves to distract from real issues, detracts from good criticism, and confuses issues in ways that impair efforts to reform things.

To illustrate this, let's take a very different example, one that most of us can rapidly identify, easily understand, and generally make easy sense of: one of the more disgusting things which occurs whenever news story publishes a story about a black man raping a white woman.

Rape is obviously wrong: it's a gross violation of  a woman's bodily autonomy, a dehumanizing act which can easily (and often does) destroy her life. It is very difficult to think of a worse violation of someone's personhood... and the ethnicity and skin color of perpetrator and/or victim is utterly irrelevant to this.

Unfortunately, however, some people insist on making the moral issue here about race in a variety of ways. One of the simpler (and more vile) of these is to simply state that the act was wrong because a man like that (a black man, not a rapist) has no business sexually touching a White woman.

This is an absurdly poor (and racist) criticism of rape. It is one that needs -- urgently -- to be shouted down and combated whenever it pops up.

Referring to this sort of thing as poor discussion or off-base criticism is very much not excusing the heinous criminal act to which the alleged criticism was directed. It is simple truth.

The race thing serves to distract from the real problem. To the extent to which it gets attention, it's distracting people from paying that same attention to other, more relevant, criticisms.

But... let's say that some people actually took it seriously. Let's further say that they then tried to use it as the basis for political reform efforts.

These efforts would be useless at best and harmful at worst. In fact, that particular criticism can pretty much be considered a form of rape apology in and of itself: if the rape of a white woman by a black man is only heinous because of the race difference, what's wrong about a white man raping a white woman?

More, such "reform" efforts would likely target and harm completely innocent interracial couples. In fact, such prejudices and acts have historically caused very substantial harm in the form of blatantly racist legislation and various racial prejudices for just this reason.

Obviously, this has little directly to do with the ABA article which started this discussion, but does serve to illustrate a few very important points: 1) poor criticism is rarely helpful; 2) poor criticism is often harmful, even when its conclusions may be correct... and 3) stating that an argument is poor is not the same thing as stating that its conclusion is wrong.

In Part Two of this series, I will hopefully get to precisely why the specific critique that started this is poor and unlikely to be helpful. In Part Three, I will discuss just why I'm taking such pains to lay out these problems, why a simple blog post like that has lead to me starting an extended blog-rant, just what followed from the situation, and why it's taken me so long to post all of this.

On Things That Won't "Cure" Autism

One of the tendencies of the assorted parents' groups which I find most annoying is the tendency for many of them to promote an attitude of desperation towards autism -- and, with it, the idea that a parent should try anything and everything which could help their child "recover". In practicality, of course, this means anything or everything that someone somewhere claims will help.

The fact that people get swindled as a result is among the least appalling aspects of this.

The list of things which have been promoted as such -- and which parents have tried -- is absurdly long and often just plain absurd. Seriously, it almost mocks itself at times. If it wasn't for the fact that parents are actually doing these things to their kids (which I cannot emphasize enough) out of desperation to "cure" or "recover" their children, it would actually be comedic.

Among other things, the horrific list of things which parents have done includes (but is by no means limited to):

•  Feeding their kids massive overdoses of vitamins to the point that they suffer from or risk vitamin poisoning.
• Putting their kids into a potentially explosive tube full of compressed air for a prolonged period of time (usually around an hour per session).
• Getting their kids high on marijuana.
• Forgoing protection against potentially deadly diseases.
• Strapping their kids down for several hours while they pump an irritant into said child's veins.
• Deliberately infesting their children with intestinal parasites.
• Chemically castrating their children.
• Feeding their kids an industrial chemical which has never been subjected to proper safety testing.
• Making their children drink an industrial bleaching agent.
• Giving their children bleach enemas.

 
 This is a highly incomplete list.

When I say that the stigmatization and panic-mongering that organizations like Autism Speaks engage in has real consequences for autistic people... the above is just one of the things I'm talking about.

Take this as you will.

Edit: Was corrected on a relatively minor point.

On Diagnosis

In most of medicine, the term "diagnosis" refers to the process by which a doctor (ideally) determines what disease process is underlying a patient's symptoms, as well as the determination itself. To clarify the relationship between the two meanings: diagnosis is the process by which the doctor provides the patient with a diagnosis.

Because diseases are abstractions based on cause (or "etiology" in medical language), a diagnosis serves as an explanation of the symptoms involved. This might sound rather sophisticated and/or complicated, but it's really not. If you go to the doctor's office and complain that your stomach hurts, "indigestion" is an explanation because it refers to a causal process (that is, why your stomach hurts). Were the doctor to use an abstraction based on symptomology (such as "stomachache"), it would not.

Of course, the doctor's explanation for the symptoms can be wrong. Throughout most of medicine, this is referred to as "misdiagnosis". There are also syndromes and the like which we don't know the causes of and times when the doctor can't figure out what's going on. While we know some things about these syndromes and cases (e.g. epilepsy tends to be chronic problem), these "diagnoses" aren't explanations of the symptoms -- they're descriptions of them.

Once you get it, this is really pretty simple. An answer to the question of why your symptoms exist (in more technical language, an "etiological construct") can explain them; a description of the symptoms themselves (in more technical language, a "symptomolgoical construct") can't. Despite this, however, people often make this mistake in a wide variety of ways. There's even a formal name for doing so: "nominal fallacy".

Put yet another way, you cannot say that your stomach hurts because you have a stomachache. "Stomachache" is a symptomological construct -- a label for the stomach pain. You cannot say that you are having difficulty sleeping because you have insomnia. The statement that you "have insomnia" is simply another way of saying that you have trouble sleeping. Neither serves as an explanation. This isn't to say that terms and concepts like "stomachache" or "insomnia" can't be useful, but they can't answer most questions of "why"... because they have nothing whatsoever to do with cause.

I'm making this as clear as possible because there is one field of medicine where the definition of the term "diagnosis" I provided does not apply. That field is psychiatry.

"Mental disorders", as used in psychiatry, are not etiological constructs. They are symptomological constructs. To use my earlier analogy, they are not akin to "indigestion" and are more akin to "stomachache". When a psychiatrist "diagnoses" a mental disorder, they are emphatically not saying anything about the cause of the symptoms you present them with -- they are simply deciding how to describe those symptoms in the standardized and highly formalized language of psychiatry.

The psychiatric "diagnosis" of "major depressive disorder" is simply another way of saying that someone is depressed... only it's far more precise (among other things, it distinguishes "major depression" from less severe or more transient types of depression). The psychiatric "diagnosis" of "bipolar disorder" basically means that someone goes through 'episodes' during which his mood is different from normal (in a clinically significant way). Similarly, the psychiatric "diagnosis" of "autism" basically means that someone isn't following the developmental psychologists' often-bigoted (and why I call it that is a whole 'nother blog post) One True Developmental Path for human beings.

When looked at this way, the way that people tend to accumulate multiple psychiatric diagnoses is easily understood -- for many of the same reasons that I don't think people would be surprised to learn that people with stomachaches also have fevers much more frequently than people who do not. This is simply because fevers and stomachaches can be caused by many of the same things.

This does not, however, mean that "fever" and "stomachache" are the same thing. It also doesn't mean that it's appropriate to treat all people with stomachaches as if they also had fevers.

Moreover, the evaluation of "symptoms" in psychiatry is far more subjective and problematic than it is anywhere else in medicine. The problems with this are anything but simple, even if they're frequently ignored.

The easiest of these to resolve are simply matters of degree -- for instance, what constitutes "markedly diminished interest or pleasure in... activities"? Where do you draw the line between what's "markedly" diminished and what's just diminished?

For the most part, these represent a sort of diagnostic "fuzziness" which is... resolvable, albeit not necessarily easily. Statistical methods are pretty good at dealing with this sort of issue in a research setting, although the problem remains. It remains an obstacle, but hardly an intractable one. If this problem is not understood, however, it can create a very wide variety of misconceptions.

Other problems, however, are more noteworthy -- and fundamental. For one thing, the defining feature of a "symptom" in medicine is that it's viewed as an indicator of an underlying pathology. Stomachache is a symptom of indigestion because it provides evidence in support of the idea that you are having trouble digesting food. It provides this evidence because problems with digestion tend to cause stomachaches. "Stomachache", in general, is viewed as a symptom of disease because a stomachache is a pretty clear indicator that something is going wrong in the body (even if you don't know what, and even if the problem is fairly minor).

In other words, a "mental disorder" is a disorder because it is viewed as a sign that there is something wrong with the person who exhibits it. Our judgments of what constitutes something being "wrong" with someone, however, are notoriously problematic.

We human beings have a tendency to judge other people based on our expectations and our often-prejudiced personal (and/or cultural) views on what people should be. When people fail to live up to these, we tend to conclude that there's something wrong with them, rather than concluding that the problem was with our views and expectations.

For instance, homosexuality used to be a DSM mental disorder (and even though most sources will state that it was removed in 1973, this is not entirely accurate). Moreover, its official status as such has a long history of being used to justify the torture (via abusive "treatments") both of homosexuals and people judged as being "at risk for" homosexuality.

Then there's the rather infamous (and atrocious) example of the countless ways in which psychiatry and psychiatric diagnoses have been used as a tool of institutionalized racism and of racial oppression. We can even look at the ways in which attitudes about race have affected diagnostic patterns.

Then there's the issue of so-called "diagnostic redefinition", something which is rather hard to understand for people who don't understand that psychiatric disorders are symptomological constructs.

Diagnostic redefinition is relatively easy to understand if you look at approximate analogues involving symptomological constructs in the world of general medical practice. In this case, I'm going to use the construct of obesity for the purpose of explanation.

At present, obesity is most commonly defined in terms of something called "body mass index" (BMI) -- a calculated value based on height and weight. Neither BMI nor obesity, however, are etiological constructs -- they're descriptive constructs. In the case of obesity, it's a symptomological construct, presently defined by a BMI of thirty or higher (in most countries, anyway).

If, however, medical researchers were to find that a different cutoff point -- say twenty-five (which, incidentally, is the cutoff point in Japan) or thirty-five -- was more meaningful, the cutoff point would change to reflect this. If the cutoff point was lowered, a number of people would suddenly find themselves "obese" when they weren't before -- something which is called "broadening criteria" for obesity. If the cutoff point was raised, a number of people would find themselves no longer considered "obese", due to something called "narrowing criteria".

Note that nothing would really have changed with these people themselves. Only the terms used to describe them -- the label they receive, in other words -- would have changed. This is the essence of diagnostic redefinition in psychiatry.

Despite this, however, it's often nowhere near so simple -- especially when it comes to the DSM. It's quite common for criteria to broaden and narrow at the same time. This usually happens when rather than changing a numeric score to broaden or narrow criteria, the metric is changed or redefined.

To continue the analogy, if we were to find that some other measure of obeisity (e.g. total body weight, percentage body fat) was more meaningful than BMI, our definition of obeisity would shift to accomodate this. Obeisity would be redefined in terms of this new metric, and a number of people would suddenly "gain" or "lose" a "diagnosis" of obeisity without changing one whit themselves. The newly "diagnosed" or "undiagnosed" wouldn't have changed -- the language used to describe them would have.

This is precisely what happens every time a new edition of the DSM comes out. Sometimes it happens more often.

Note that none of this means that the "diagnosis" of "obesity" isn't useful or meaningful. None of it means that obesity isn't real (although if one is feeling particularly philosophical, one can point out that it's only a label or descriptor, and as such the phrase "for a certain value of 'real'" applies -- it's only "real" in the sense that "redness" is; similarly, "autism" is only real in the senses that "intelligence" is).

There are countless other problems with psychiatric diagnosis. Quite frankly, I'd write about them more, but this entry has been sitting half-completed for more than long enough already.

I just hope that this helps people understand certain matters and helps clear up some of the assorted confusion regarding the topic. Countless authors -- in academia, in the blogosphere, in the print media -- clearly don't understand a lot of what I try to explain above.

Hopefully, I did not just "try".

A Year In Review

Today is the last day of the year 2010. It is something of a tradition on this day to spend some time looking back on the year that has gone by, thinking and reflecting on the events which have occurred.

Normally, I do so privately. This year, I am doing a portion of it publicly -- on this blog.

For me, the year started off with the Zakh Price case. There are some situations that you just can't leave alone; for me, that was one of them. I won't discuss what my role in the whole matter was, but I did play one. I don't know if I, personally, made a difference... but I don't really care. As of the last I heard from the family (which was late summer or early fall), Zakh was doing quite well... and the situation had been resolved in a favorable fashion. In my honest opinion, that's all that really matters.

In other news, Andy Wakefield lost his medical license that month, and I very much enjoyed the 2010 CARD conference (although it was marred by one highly bigoted pseudo-scientist pretending at a neurology presentation). I was actually at the conference (or, more accurately, in my room at the conference hotel) when I found out about Wakefield, and it was all I could do to avoid waking my neighbors with a whoop of joy.

Then I got back and immediately (i.e. the very next day) went in for a much-needed knee surgery. I was on crutches for more than two months.

I discovered that the James Randi Educational Foundation is physically located not that far from my house... down the street from a psychic and across the street from a chiropractor. I've very much enjoyed their periodic open houses... and Randi himself is quite entertaining (and a breath of fresh air).

On the advocacy front, the Geiers moved into my metaphorical backyard and started peddling the "wonders" of chemical castration to the parents of local autistic children, shielded by a number of highly-influential political figures and using a local radiologist as their local patsy. I've been trying to "deal with" them ever since.

I got into a long and protracted series of misunderstandings that I still can't figure out a way to rectify (and that is still bothering me). Actually, that technically started last year... but it continued (and got a great deal worse) this year.

I resumed the MS Counseling program at Nova Southeastern University... and promptly had my first major issue with a postgraduate professor. It says something when it takes a flat-out written statement of intent to discriminate (in the form of deducting points for autistic literalism) for me to consider something a "major issue". I also got my first postgraduate B... in his class. Had it been any lower, I'd have challenged it; as is, I have the written notice available and thoroughly documented to show anyone who questions me about it.

Honestly, what sort of professor does something like that in writing? Seriously!

In a bit of irony, it was actually a bit worse: I received that written statement literally the week before I was scheduled to speak at Autreat. I'll get back to that in a bit, but the sheer hilarity of the timing has lead to a number of jokes since... especially since the professor was aware of both my diagnosis and my presentation.

I also did a brief internship at a small local school for individuals with severe developmental and intellectual disabilities. The kids there were very interesting (and very different from any population I'd previously worked with). Incidentally, for any parent from here on who tells me that I don't know what kids like theirs are like (to insinuate that their child is more severely disabled than any I've worked with)... yes, I do. Working with that population can be a serious mind-fuck, and I do not shy away from the use of that particular vulgarity in this case.

Then my internship ended (with the end of the academic year) and I started working for a behavior services company in Dade County. I've been doing part-time human resources work for them... which does, at least, help pay my expenses.

And, of course, I gave my first conference presentation: a presentation on pseudoscientific medicine in the field of autism. I've done related blog posts here and here, and I posted the PowerPoint slides to the Autreatinfo Yahoo group. I've also uploaded the slides here, if anyone wants to take a look. (Note that I verbally departed from them at several points. I'd be more than happy to explain in more detail if anyone asks in the comments.)

The presentation was two hours long, involved one hundred and fifty-five PowerPoint slides (of which five were references and suggested further reading), and contained thirty reference citations (not counting duplicates). During the preparation, I read far more than this -- my lit review for the thing involved over two hundred peer-reviewed articles and five books... of which, two were med-school textbooks.

Thinking back to that time, I am astounded that I managed to keep my sanity. I was, for a while, not only recovering from knee surgery (on crutches), but doing that internship, preparing that presentation, continuing my advocacy work, and taking a course load and a half of postgraduate classes. Yes, I took 150% of a semester's postgraduate coursework over the summer... on top of everything else. It was not particularly smart of me, and I really haven't quite fully recovered from all of that. The fact that most of my "recovery" time was spent working part time while taking a full course load (not, fortunately, the extra-full course load I took on over the summer) of classes while working part time certainly didn't help. My active participation in various student organizations and continuation of my advocacy work didn't help, either.

Fall, by contrast, was fairly... routine. There were a couple of crises which I can't really talk about, and work has been rather frustrating for reasons that I also can't talk about here, but I tried to use the time to recover. I failed.

I also grew pretty thoroughly sick of the MS Counseling program for a variety of reasons, most of which focus on the high bullshit content of many of the courses. I will be reviewing my "diversity studies" textbook later, but I've already reviewed my so-called "ethics" text. Of the two, the "ethics" book was the better one.

As the year pulls to a close, though, I'm filled with some degree of renewed optimism. For one thing, I've switched programs as of the upcoming semester (and I sincerely hope that the MS General Psychology program will actually involve considerations of evidence!). For another, my new program is a thesis program... which means actual research as part of my graduation requirements!

I suspect that several of my regular readers will find my thesis of interest... and yes, I do already know exactly what I'm going to be doing for my thesis. I will comment more on it after I've actually started doing it... but I suspect that one reader of this blog will find it very interesting: it falls under the category of behavioral sciences meta-research and was actually inspired by some of her comments.

The change won't delay my graduation too much... but my new classes are ones which I can hopefully actually enjoy. I am very much looking forward to them.

Hopefully I'll be able to catch up on my accumulated e-mails sometime next year. I'm something like three thousand behind...

So, in conclusion... for everyone reading this, happy new year!

Edit: Corrected a really embarrassing typo.

Demon-Haunted Inevitability

A very long time ago, I read a very good book entitled The Demon-Haunted World. As part of my efforts to help me put words to some of my thoughts, I started rereading it... and found it even better than I half-remembered. It is a touching, inspiring, and truly excellent tribute to the power, importance, and sheer beauty of science.

I am not, however, writing this blog entry in order to praise the glories of Sagan. I am discussing the book in order to explain where this blog entry is coming from. Specifically, it's coming from one quote (which is on p. 26 of the paperback edition I'm reading):

We've arranged a global civilization in which most crucial elements -- transportation, communications, and all other industries; agriculture, medicine, education, entertainment, protecting the environment; and even the key democratic institution of voting -- profoundly depend on science and technology. We have also arranged things so that almost no one understands science and technology. This is a prescription for disaster. We might get away with it for a while, but sooner or later this combustible mixture of ignorance and power is going to blow up in our faces.

Moreover, it isn't just science and technology that this dilemma applies to. A similar (and highly interconnected) mixture exists within medicine -- just as the populace depends on science and yet remains profoundly ignorant of it, the populace depends on medicine and yet remains equally clueless about it. Where this volatile mixture intersects with desperation, the consequences are entirely predictable.

This is especially true to anyone who's truly studied the history of medicine. Unlike the popular perception, the history of medicine is not one of straightforward progress, the history of medicine is one of delusion, stonewalling, and delay; of rampant bias and harmful treatments; and of quackery and pseudoscience. The history of medicine is a graveyard of harmful treatments which doctors once thought helpful. It is a history of failure upon failure... and of the occasional (and rare) gem hidden amongst the countless clods of fecal matter. It is a history of countless "diseases" that turned out to be benign... and countless "benign" phenomena which turned out to be diseases.

For instance, haemorrhoids, nosebleeds, and women's periods were once viewed by the medical establishment as benign forms of natural prophylaxis... and, moreover, the absence of these was viewed as dangerous and needing treatment. (1)

An absence of periods from a woman of child-bearing age was viewed as especially serious, and even dangerous (unless, of course, that woman was pregnant). While I won't deny that amenorrhea can be a sign of a number of problematic underlying issues, I do think that most of us would agree that "treating" it by placing leaches on the cervix is a bad idea... and I emphatically will deny that amenorrhea causes insanity or epilepsy (depression, however, may actually arise, especially if the woman in question is actively trying to have children). Heck -- in recent years, at least two people have actually suggested that deliberately suppressing menstration -- inducing amenorrhoea -- would be a good idea for many women (2).

Then there's our attitude towards "chemicals", the way we constantly fail to understand the meaning of the medical axiom that "the dose makes the poison", the way that the media is constantly trying to divide our foodstuffs into things which cause cancer and things that help prevent it... and even the way that many Americans' critical thinking skills are so incredibly atrophied that they are actually impressed by this lady (3) or by the "coverage" of medical issues provided by the Huffington Post.


We live in a culture of misinformation, where information is often passed on without regards to its veracity. Myths often take on the status of fact; people freely panic over things that later turn out to be false alarms. People believe in all sorts of "New Age" nonsense, and all sorts of woo -- from psychics and astrologers to countless books on the nonexistent continent of Lemuria -- are available freely at many major bookstores. The "Raw Food" movement is picking up steam, major pharmacies are selling homeopathic products, and there are even people who take this guy seriously as an information source (4).

There's very little new about this. Aristotle wrote about logical fallacies in the Organon -- and that was well over two thousand years ago. History reveals countless examples of mass hysterias, moral panics, scaremongering, health fraud, sensationalism, superstitions, and other problems of this nature. The basic thrust towards these tendencies is a consequence of countless aspects of human nature. It should be unsurprising that they show up in the world of autism.

Parents of autistic children aren't that different from anyone else (or, more accurately, any other parents) before they notice signs that their child is autistic... or they get the diagnosis -- whichever comes first. They are not particularly educated, not particularly rich, and very much not particularly skeptical. What they are, especially at first, is particularly desperate.

The fact that the metaphorical vultures are able to exploit this should hardly be surprising. Many, many parallels can be found elsewhere. The consequences may be tragic, but the problems themselves are hardly unexpected.

I just wish I could figure out a better way to deal with them.

(1) No, I'm not joking. They really believed this. It wasn't until relatively recently that this attitude changed. If you want an account of how and why, there are a number of possible sources... but I reccommend Wootton's Bad Medicine.

Incidentally -- doctors' treatments for the "problem" of an adult man's butt not bleeding? Well, since he weren't getting rid of that excess blood the "natural" way, a doctor had to resort to artificial means... or, in other words, bloodletting.

(2) I don't find their arguments particularly convincing, but that's just me.

(3) Yes, she really did say what you think she said.

(4) Yes, I munged that URL. I'm emphatically not raising his Google rank any more than I have to.

The Worst Clinical Ethics Textbook Ever?

This post is going to be a great deal more vulgar than my usual fare. I apologize, but I've been having a great deal of difficulty in restraining myself over this matter, and I really need to vent.

Moreover, I literally lack the words to adequately express my revulsion. Sometimes, "Ugh" doesn't cut it.

You see, I'm taking my program's clinical ethics class this semester. Our textbook is Corey, Corey, & Callanan's Issues and Ethics in the Helping Professions, eighth edition. In other words, this book.

As the title of this blog entry suggests, I don't like it very much. It's just... incredibly bad. To be honest, "bad" doesn't really cut it here. I mean, the book even says that I'm not human.

No, I'm not joking. The relevant quote is at the bottom of Page 93:

Spirituality is an essential quality of being human, and Allen Weber believes it must be addressed in whatever form is appropriate in counseling [Emphasis added].

An "essential quality" is a defining quality. Something without an essential quality of X isn't X -- and something which has all of the essential qualities of X is X. To say that spirituality is an essential quality of being human is to say that anyone or anything lacking spirituality is not human.

It would be far less offensive if the authors had written that spirituality is an essentially human quality (i.e. that only humans are spiritual), but the context makes it abundantly clear that this is not what they mean: in Corey et al.'s view, apparently, atheists aren't human.

No, I'm not an atheist (at least by the most common definitions), but I share an atheistic lack of spirituality (and, in fact, go a great deal further than many, as an upcoming Symphony of Science video helps illustrate). As such, I'm apparently not human.

I regard this sort of statement as blatantly unethical conduct in the writing of a clinical ethics textbook. How the hell did this get past the editors?

Of course, this is just one line in a 587-page book. If this was just an isolated problem, I wouldn't be nearly so frustrated. Unfortunately, however, it's not. The problems start far earlier... with the book's very definition of ethics.

"Ethics" is defined on Page 14. There are three statements which can be considered defining:

... ethics pertains to the beliefs we hold about what constitutes right
conduct.

Ethics are moral principles adopted by an individual or group to provide rules
for right conduct.

And, finally:

Ethics represents aspirational goals, or the maximum or ideal standards set by the profession, and they are enforced by professional associations, national certification boards, and government board that regulate professions. Codes of ethics are conceptually broad in nature and generally subject to interpretation by practitioners. Although these minimum and maximum standards may differ, they are not necessarily in conflict.

I've shown these quotes to several actual ethics professors. "What the fuck?" was the most common response.

You see, that's not what ethics is. Ethics is the branch of philosophy concerned with the evaluation of human conduct. Ethics is the study of what is right and wrong, the study of how we should act and how we should treat our fellow human beings.

By contrast, this book defines "ethics" as "following the rules set by your profession". What the Hell?

I could go on and on about the flaws in this book. These include its "discussion" of the issues surrounding proxy consent (it doesn't exist), its discussion of the issues surrounding involuntary committment (which boils down to, "consult with your colleagues and follow the law"), and many, many others. I just wouldn't be able to post this review in a reasonable timeframe if I did.

All of this raises a very important overarching issue, however: this book is being used to educate clinical professionals (who often likely never get much education beyond what's in the book). A substandard clinical ethics textbook promotes substandard and unethical treatment of clients -- meaning that it hurts and even kills people. As such, I have to conclude that both the publication and use of this textbook (qua textbook) is highly unethical.

In conclusion, however, I suppose I should revisit the headline of this post and ask the inevitable question: is this the worst clinical ethics textbook ever?

I don't know. I sincerely hope I am never in a position to test that hypothesis.

Edit: Corrected a couple of typos.

An Open Letter to Buzz Aldrin

Today is Autistics Speaking Day. For those of you who are unfamiliar with the event, it's an autistic reaction to the highly-misguided "Communication Shutdown Day", a day in which we autistic people make as much online "noise" as possible... on the day in which hordes of people are voluntarily abstaining from our preferred means of communication.

I won't discuss why the whole idea is a bad one. Others have already done so -- far better than I ever could. Instead, I'm going to post an open letter to one of the major participants in this farce.

Dear Mr. Aldrin,

When I was a child, the Apollo missions were a great inspiration to me. They truly stand out among the achievements of mankind as a spectacular triumph of science and a shining example of what man is capable of if we truly try. You, along with the other Apollo astronauts, were my childhood heroes. Your triumphs fanned the flames of my love of science, helping raise it from the bare embers of a childhood interest into a lifelong passion. Your successes comforted me when things seemed hopeless, helping to reassure me that even the seemingly impossible was often within reach.

Today, I am a graduate student in Nova Southeastern University's M.S. Counseling program and working towards board certification as a behavior analyst. My dream is to go into psychological research and to help raise the standards of the discipline to the point where psychology and the other "soft" sciences can be legitimately compared to the "hard" sciences in terms of methodological rigor... and to come, bit by bit, closer to the countless truths I seek. This is not to say, however, that I do not face substantial challenges in reaching my goal.

The worst of these challenges are prejudice and fear. You see, I have a disability. One of my professors flat-out told me (in writing, no less) that having it was unprofessional... in a course where a third of the course grade was participation and professionalism. My clinical ethics textbook states that I am not human. Fear-driven efforts to create a world without people like me in it have already claimed countless lives throughout the world, including at least ten innocent babies in California... this year alone. There's even a clinic within easy driving distance of my house dedicated to chemically castrating people like me.

My disability is most commonly called "autism".

This is why it hurt me so incredibly much to hear that you, one of my childhood heroes, has been raising money for a fear-mongering antivaccine group dedicated to the goals I mention above. I can only hope that you did this out of ignorance; the thought of you having done so knowingly just hurts far too much.

As you may or may not know, the proceeds from Communication Shutout Day go to the program's "global partners". In America (outside Colorado), this means Giant Steps, the Hollyrod Foundation, and the National Autism Association. It's this last which is the most concerning.

The National Autism Association is an anti-vaccine group dedicated to promoting untested, unproven, and often dangerous "treatments" for autism. They praise intravenous chelation (which risks death and brain damage, and, more importantly, involves pumping an irritant into a child's veins for at least two hours at a time). Their 2009 conference, which was held within walking distance of my house, featured a keynote presentation by Andrew Wakefield (whose unethical conduct and Mengele-like "experiments" were largely responsible for major measles outbreaks throughout Europe), a presentation blaming my neurology on MSG in vaccines, and a presentation on why my neurology should be considered a disease (among countless other things). One of their past conferences even involved a keynote from an infamous quack who makes his living chemically castrating autistic children (and who is responsible for the clinic near my home). They recently were involved in a concentrated effort to effect legislation here in Florida which would have effectively banned the flu vaccine. I am perfectly willing to provide references and further information on any of these assertions on request.

Mr. Aldrin, you are old enough to remember many of the diseases which vaccines prevent. For instance, with polio alone... the iron lungs, the countless children who were crippled for life... to groups such as the NAA, bringing back these things is worth it if it means not having people like me or my friends around. You should also remember Jonas Salk and his heroic dedication to the welfare of the children of the world. To groups such as the NAA, Jonas Salk and countless others like him are villains. I find it difficult to express the sheer perversity of this.

I will admit that the NAA has also campaigned against the more "classic" abuse of children with disabilities in the forms of seclusion and restraint. This, however, mainly serves to help legitimatize them and to help them lend support to other, wackier anti-vaccine organizations such as Generation Rescue, SafeMinds, and the National Vaccine Information Center. In a recent conference presentation on the NAA, I referred to them as a "gateway organization" because of their function in such groups' recruitment tactics.

I won't pretend that this is the only thing wrong with Communication Shutout Day. I strongly encourage you to read what Ari Ne'eman of the Autistic Self-Advocacy Network has written about the matter ( http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=122 ) and to peruse the various online writings relating to Autistics Speaking Day and the reasons for it.

In the meantime, however, I have to go to bed tonight knowing that one of my childhood heroes has chosen to raise funds for a group whose dedication to creating a world without people like me in it is so strong that they are perfectly willing to sacrifice the lives of countless innocents to create it.

Sincerely,

Alexander Cheezem

The Bigotry Defense?

Some of you may be familiar with the Alex Barton/Wendy Portillo case. For those of you who aren't, it started two years ago, when a kindergarten teacher (Portillo) had her class list off why they didn't like an autistic classmate (Alex Barton) and then had them vote him out of her class. To briefly summarize a really, really long story, Alex is now doing quite well academically in a different school district (although he still bears emotional scars), Wendy Portillo is back in the classroom (retaining her tenure) and again abusing students, and Alex's mom, Melissa, has filed a federal lawsuit against the Portillo and the St. Lucie County school district.

I'm writing this blog entry about that last one. You see, the school district's defense is apparently going to be something along the lines of the argument that the incident didn't hurt Alex... because autistic children can't understand -- or be hurt by -- "negative social feedback" (or, in other words, someone else doing something nasty to them).

No, I'm not joking.

After going through quite a bit of trouble, I've managed to obtain some of the documents that the district's submitted in their defense. Specifically, I've obtained the "expert testimony" that they commissioned from two doctors: Dr. Sue Antell and Dr. Max Wiznitzer.

These are quotes from public documents available on PACER, albeit not for free. I had to jump through a lot of hoops to get them (although, admittedly, most of these were technical -- I didn't bring a memory card with me when I went to visit my school's law library, the law library's one computer set up for PACER access was an antiquated technical nightmare, and I didn't want to unnecessarily spend money to get the documents from my home system), but they're still technically public domain. As such, I've uploaded them to RapidShare to cut down on the metaphorical red tape. Feel free to host them elsewhere.

I'm not going to comment over-much on them. I'm going to let what they wrote speak for themselves. I will, however, clarify a bit on both.

To start off with, there's this section of Dr. Antell's testimony -- delivered before she ever met or examined Alex (whose full name is Caleb Alex Barton, although he does not respond to "Caleb"):

... Based upon this review, it is my opinion that CAB probably does have Autism, a disorder of language, executive functioning and social relatedness, which profoundly impacts upon how a child perceives and reacts to the language and behavior of other people.

It is further my opinion that the events described would not be expected to have any long term impact even upon a typical child who might appreciate more of what was going on around him. As they grow up, children experience numerous negative or unpleasant experiences with peers, teachers and parents. Such experiences are part of the normal experience of development. They serve to help a child develop an appreciation for the impact of his behavior on others in his world, and are important in the development of sympathy, empathy, and altruism. This is quite different from the constant and chronic bullying which we unfortunately see somewhat among older children, or the chronic systematic emotional abuse of a child by the adults in his life. In any child with Autism, such experiences are going to be processed quite differently. Depending on the extent of the pragmatic language dysfunction, the lack of social relatedness, and the impairment in the ability to appreciate another's point of view (what psychologists call "Theory of Mind") it is quite likely that many, if not most children with autism would simply have no emotional connection to such events. While they might encode and recall the "script" (i.e. the language used and the actual events), their ability to be emotionally impacted by what is almost entirely a language based experience would be anticipated to be exceedingly limited. This is not to imply that Autistic children cannot experience trauma. Rather it attempts to distinguish between possibly unpleasant events which are the result of linguistic exchanges from more primitive responses which might involve non verbal actions, or verbal communications which would produce feelings of fear or terror which are generated by non cortical brain regions.

Beyond this, we have the opinion of a qualified child psychiatrist that CAB suffered no emotional distress as a result of this incident, and another who described behavior with autism but not PTSD.

Based on the foregoing, it is my opinion to a reasonable degree of neuropsychological probability that CAB has not demonstrated any real evidence of emotional distress as a consequence of the events of 5-21-08. It is further my impression that he does not require any ongoing treatment, and depending on his ability to appreciate what is happening in such therapy, that this poses a risk of creating a trauma where none actually exists.

Two clarifications: "The events described" were the vote-out incident. The same is true of "the events of 5-21-08".

And then there's Wiznitzer's testimony:

In summary, Caleb Barton is an 8 year old boy with a diagnosis of an autism spectrum disorder (Asperger disorder) and behavioral features labeled as attention deficit hyperactivity disorder (including compatible rating scales). He has a history of challenging behaviors in kindergarten with no details of his behavioral functioning since that time (except for the report of Dr. Coleman). School records document impairment in social interaction with peers (supported by psychiatric evaluations). Assuming that his diagnoses are accurate, it would be difficult for a child with a significant impairment in socialization (compounded by the social issues associated with ADHD) to fully process and comprehend the impact of negative social feedback from peers (as stated by Dr. LoSardo "on some level he probably didn't get social significance"). Therefore, this type of event would not be expected to result in PTSD.

Dr. Wiznitzer's testimony is nowhere near as bad as Dr. Antell's... but really.

To the St. Lucie County school board, however, I have only one thing to say.

Some Links That May Have Passed the Neurodiversity Community By

Just as a series of quick notes while I try to recover some strength for next week's midterms:

Not too long ago, two reporters of my acquaintance wrote an excellent article for the Miami New Times regarding the Geiers and their political antics. They blogged on the affair (and what it says about the media) on Thursday; the entry is of general interest to the autism-relevant communities.

Almost exactly one week ago, Peter Bell and Geraldine Dawson of Autism Speaks held a pair of "forums" here in South Florida, one in Miami and one in Boca Raton. A recording of the Boca Raton forum is available in two parts here and here. I spent a good part of the week transcribing various parts of these recordings -- trying to get a record of the more notable quotes and timestamps in them. I've finished with Part One (Bell's presentation), but have yet to even start on Part Two (Dawson's presentation and the subsequent Q&A). This is unfortunate, as there's some genuinely good/useful stuff in that part.

Cleaned up somewhat, my transcript (which has various notes, etc.) reads as follows:

Part 1/Ross:

10:31 : Their advocacy efforts -- "a way in which we give the autism community a voice."

12:52 : Start of a discussion of his son's "regression".

13:14 : Implicit endorsement of the opioid excess theory (and the GF/CF diet).

14:42 : Start of the "duplo discussion" (sequence RE son's play styles)

15:28 : "... he basically disappeared in front of our eyes."

21:08 : "We're also, ah, as I said, getting ready for the adult years, um, we're actually, we had our first meeting, ah, about, ah, guardianship last week, um, which we'll be going through when he turns eighteen in January..."

25:54 : "And autism today, in some people's estimation, is an epidemic. Um, certainly the increase in the last twenty years, which we, uh, estimate at about six hundred percent, um, has reached epidemic proportions. It is better understood; um, I think most researchers would say that it's not well understood yet. We, uh, have some ideas about what some of the causes might be, um, but, ah, we certainly don't know what probably is behind the vast majority of the cases. Um, it is considered a spectrum disorder, um, I mentioned, ah, before, ah, how there are different types of autisms, um, and uh, certainly we refer to autism these day, these days as autisms, and, uh, that there are multiple types of autism. It is, by and large, considered to be a treatable disorder, ah, this notion of 'recovery' is real. Uh, and I use the quotations over 'recovery' because it's more or less a term that's defined by no longer meeting the criteria of autism after having been previously diagnosed with it, um, and it is believed that anywhere between maybe ten to fifteen percent of cases of autism, um, the child does recover or ultimately lose his their diagnosis."

27:22 : "The earlier you get it, the better the outcomes are going to be."

28:28 : "We're fortunate in that, in the mid-1990s, several national organizations were established, one of which Jackie referenced, was, which was the National Alliance for Autism Research, which had an amazing presence here in South Florida, largely because of Jackie and all the efforts that she did. Ah, another organization that was founded around the same time was Cure Autism Now, which was based out of Los Angeles. And CAN and NAAR, really, between the two of them are largely responsible for having created what is now the research -- autism research -- field, which, ah, probably totals or numbers at least two thousand scientists around the world who have dedicated their careers to autism."

29:07 (Continuing): "Um, the DAN! movement also happened around the same time, um, and sure some of you have, ah, seen DAN! doctors and so forth, and, ah, certainly, uh, this whole attitude of thinking of autism as something that they can actually ameliorate and make better and so forth, um, again, I think also contributed to that whole notion."

30:19 : (Some credit-mongering/AutSpeaks bragging. Not really politically useful, but worth listening to.)

32:58 : "We're also very involved in family services; this was a department that was formed not long after the merger with Autism Speaks, and that's about helping families, ah, live a better life through quality of life for those who are living with autism today." (compare the numbers)

35:15 : "We're very proud of, um, what we're able to do in terms of helping families."

(Discussion of what they do to "help families".)

51:10 : Community grants in Florida. Total $136,435 over three years. Compare Geri Dawson's salary.

51:56 : "Uh, we have funded, uh, four different CARD programs throughout the state, um, as you found listed here."

54:41 : "So let's shift gears and talk a little bit about advocacy and, uh, what we do in government relations, and, as I said before, this is all about giving those that have autism and their families a voice. Ah, I will do a little bragging down here and say that our AutismVotes website, which is AutismVotes.org, did recieve a Webbie award, basically being one of the best healthcare sites, ah, that's available, ah, for political campaigns."

(Lots of credit-seeking.)

56:39 : "And we've also to ha-have more dialogue with the office of disabilities. We do recognize that autism is part of the larger disability community, and so we've started to make some inroads in helping to figure out what place autism has in that, within that spectrum."

1:07:43 : "Believe me, when I go home tonight, and it probably won't be until tomorrow morning when we all wake up, 'cause I get home very late, uh, in the wee hours of the morning, but I'm very cognizant of the fact that when I wake up tomorrow morning and see my seventeen-year-old son, it's going to be hard to think about the progress that we've made, 'cause he still has autism, and his life is very challenging."

(Closing remarks from the 1:07:43 timestamp are well worth listening to.)

1:09:37 : "It is still a public healthcare crisis, or a 9-1-1, so to speak, um, we have to make sure that people recognize that we have, for the most part, an unexplained six-hundred percent increase in the last two decades, and we need to understand why. Um, and there is absolutely a sense of urgency in terms of what we need to accomplish in order to get the answers that we need."

1:10:31 : "I think it's also critically important that people with autism have a voice in this. Um, and even if you're not able to communicate verbally, doesn't mean you're not able to have a voice. Um, I know we, as uh, a-y'know my son is is marginally, ah, communicative, ah, or verbal, um, and y'know it's hard to really get a sense of what is it that he wants out of life and what is his future, but y'know what, we, we go through great, um, ends to try to figure out what it is that he wants, um, and I think that we have to, as a community, stop and listen, and listen to the individuals that have autism, and, and have them be a part of what we're, what kinds of decisions that we're making on their behalf."

On Mental Disorders, Part One

One of the major errors that people make when thinking of DSM mental disorders and the like is to think of them as diseases. While this is undoubtedly true for some diagnoses in the DSM, the fact of the matter is that "mental disorder" and "disease" are really very different concepts.

While disease categories are abstractions based on etiology, mental disorders... well, aren't. That isn't even the ideal anymore.

As I discussed in an earlier post, certain conditions must be met for something to be called a disease:

• It must be an impairment of the normal state of the living animal or plant body or one of its parts.
• It must interrupt or modify the performance of the organism's vital functions.
• It must be typically manifested by distinguishing signs and symptoms.
• It must have a distinguishing etiology (which may be simple or complex).
  

The conditions for something being called a mental disorder, however, are very different. Unlike with the concept of "disease", however, these are anything but straightforward.

Going to MedLine Plus, for instance, yields the following definition: "a mental or bodily condition marked primarily by sufficient disorganization of personality, mind, and emotions to seriously impair the normal psychological functioning of the individual—called also mental illness."

In other words, while a disease is an abstraction based on etiology, a mental disorder is an abstraction based on symptoms. While a disease is a process which causes its symptoms, a mental disorder is a label which describes them or a description of them. Classification of mental disorders makes no reference to the why, only to the what. They have no explanatory value whatsoever; to say that a psychiatric diagnosis has any explanatory value whatsoever is to commit nominal fallacy.

Even this, however, isn't really satisfying. What, for instance, does "disorganization" mean? How do you decide whether or not something "impair[s] the normal psychological functioning of the individual"? Heck, just what does "normal psychological functioning" mean?

These questions are important because of the "wiggle room" built into these terms. In the DSM-I and II, for instance, homosexuality was considered a mental disorder -- homosexuals were considered "broken" heterosexuals whose attraction to members of their own sex represented an impairment to their functioning qua members of their gender. Another infamous example of this problem featured a doctor who pathologized the desire of slaves to flee their masters (he considered whipping to be curative).

My abnormal psychology textbook provides a somewhat more clear answer: it defines one as "a psychological dysfunction within an individual that is associated with distress or impairment in functioning and a response that is not typical or culturally expected." (p. 2)

This, in turn, breaks down into four parts. To qualify as a mental disorder, a set of symptoms must:

• Constitute a "psychological dysfunction".
• Be within the individual.
• Be associated with distress and/or impairment in functioning.
• Be associated with (at least one) response that is not typical or culturally expected.

Unfortunately, none of these is quite what it seems. I'll write more on this later, but for now... just keep in mind: a mental disorder is not a disease.

Edit: Corrected an embarassing typo.

On Paternalism, Murder, and Genocide

Most people don't think of paternalism and murder as compatible. The same could be said for paternalism and genocide. The fact of the matter is that there's nothing incompatible about the concepts.

Paternalism is an attitude. Murder and genocide are actions. They're completely different things.

To commit paternalistic murder, all you have to do is to kill someone because you believe they're better off dead -- to kill them "for their own good". To commit paternalistic genocide, you simply have to generalize this to a demographic group.

It's a sad commentary on the state of things in the world of disability that we have to seriously worry about this intersection.

"Words to the Wise"

As I write this, I am sitting in a computer lab with a copy of Thomas Szasz's "Words to the Wise". It's an utterly fascinating collection of quotes and sound-bites on a wide-ranging collection of topics by one of the most controversial authors in the field of clinical psychology. Some of the quotes I agree with; others I don't. All, however, are thoughts worth considering. Despite the format, it's one of the most thought-provoking books I've seen in a long time.

Ten of the quotes more relevant to today's autism issues:

If a person ingests a drug prohibited by legislators and claims that it makes him feel better, that proves that he's an addict.

If he ingests a drug prescribed by psychiatrists and claims that it makes him feel better, that proves that mental illness is a biomedical disease.

When and why do we say that a behavior is caused rather than willed?

We say that chemicals in the brain cause depression and suicide; but we don't say that chemicals in the ovaries or testicles cause lust and marriage.

The child cannot match the adult in most accomplishments. Hence, we reward him for effort as well as achievement. Yet, the child must learn that what counts in life is not effort but achievement. The child over-rewarded for effort may grow up to seek approval for trying instead of for succeeding. This dooms him to failure. If he succeeds, he succeeds only at trying hard. If he fails, he fails miserably.

When a woman finds having a fetus in her body annoying, she can abort it by taking an abortifacient drug or having a surgical abortion.

When a woman finds having a child in her home annoying, she can abort his persona by having a child psychiatrist give him a chemical straitjacket.

Diagnoses are not diseases.
Diagnoses are names, human fabrications.
Diseases are phenomena, facts of nature.

Demonstrable bodily lesion is the gold standard of medical diagnosis. Without practical convertability into gold, the value of paper money rests only on faith. Without conceptual convertability into bodily lesion, the diagnosis of disease rests only on faith.

A patient with cancer says: "If I had refused my surgeon's suggestion that I have my tumor removed, the cancer would have killed me."
A patient with depression says: "If my psychiatrist had let me refuse the electroshock treatment he recommended, I would have killed myself."
The difference between these two sentences sums up the difference between bodily illness and mental illness.

Three principal rules of conduct:

1. The Golden Rule: Do onto others as you want them to do unto you.

2. The Rule of Respect: Do unto others as they want you to do unto them.

3. The Rule of Paternalism: Do unto others as you in your superior wisdom know ought to be done unto them in their own best interests.

Formerly, debasing the Other by calling him a "nigger" was considered politically correct: the speaker was viewed as a protector of the race or nation from those bent on defiling it.
Today, debasing the Other by calling him "sick" is considered politically correct: the speaker is viewed as a protector of the debased person's best mental health interests and of the nation from a danger to the public health.
Replacing the former rhetoric by the latter is considered moral progress.

Today, everyone claims to be working for the patient's best interests. No wonder the patient is in deep trouble.

Note that I selected these quotes based on relevance, not agreement. I don't, as a matter of fact, agree with a lot of Szasz's thinking. This said, he's an incredibly thought-provoking author. In this blog post, I'm not going to take a stance on any of these. Instead, I'm going to give an "assignment" of sorts to each of my readers.

Read these quotes. Think about them. What does each of them mean? What do they imply? Is this statement -- or implication -- accurate? Is Szasz right or wrong? Why?

Then post an explanation here, answering at least one of these questions for at least one of these quotes. Feel free to do so anonymously or pseudonymously. I don't care about that (although I will delete SPAM posts or personal attacks). If you aren't the first to reply to this, also reply to at least one of the previous replies.

My own replies here will be mostly playing "devil's advocate", issuing responses also intended to make people think and facilitating discussion. Unless I state specifically that a position is my own personal belief, please don't think that it is. I will likely issue arguments against your position even if I agree with it.

The point, after all, is to get people thinking about this sort of thing.

In addition to the obvious, this exercise should give you a pretty good idea of why I highly reccommend this book. It has nothing to do with agreement (although I strongly agree with both the contents and sentiments of many of the quotes, this cannot be said about many others). It has everything to do with the way the book makes you think.

Oh, and it's a treasure mine for anyone who wants quotes for articles, the beginnings of book chapters, and the like. Lots of grade-A quotes here... which is the entire point of the book.

Edit: Added a link.

On "Inclusive Resource Lists"

I wrote the following in response to a request for assistance in putting together a directory of resources for the parents of autistic children. I've edited the formatting and changed a few details to reflect the formatting options I have here on Blogger; other than a few formatting things (parentheses and quotes replaced with a block quote, etc.) and one spelling correction, the message remains substantially unchanged.

In other words, you want to create the resource-list version of Wheeler's (2003) thought experiment.

To quote:

Suppose a medical centre were to propose creating a programme in 'unproven and dubious medicine'. In this programme, physicians would learn how to give patients not only conventional treatments, but also treatments not known to be safe and effective. Some of these would have plausible mechanisms of action, but others would make no sense. The treatments would include experimental drugs of unknown purity. There would be research concerning the methods, but in the meantime the methods would be used before the results were known. Patients would have the benefits of both worlds – treatments that work and treatments that probably don't work.

A programme with such a title would find little acceptance. But change the name to 'integrative medicine', downplay the lack of evidence, claim that it deals with healing the person and employs new paradigms, and for some reason there is much greater acceptance. (p. 8)

You want to list people who make their living chemically castrating autistic children in the middle of people who've dedicated their lives to helping treat actual disease; you want to list people who make their living torturing kids next to people who've spent their lives trying to protect children. You want to list fear-mongering hate propaganda next to legitimate resources on parent education.

Err... no. I have no intention of helping with the development of such a "list". There are more than enough of them already.

This sort of thing is a tremendous problem in the autism world.

What would people make of a "resource list" that deliberately put legitimate stockbrokers and investment funds next to known con-artists? Yet, for some reason, people seem to think that lists that do this sort of thing are okay for parents of autistic children.

Some of this comes from the postmodernist belief in constructed reality. If you don't believe in an objective reality -- if people agreeing that something is true is enough to make it true -- then the question of what's actually going on is both meaningless and irrelevant within your paradigm. Despite what postmodernism would say, however, ignoring objective facts and attempting to construct your own reality independent from them is better known as "self-delusion" and acting on this sort of thing tends to produce tragic results. Quite frankly, this sort of attitude is patently absurd.

Despite this, however, many parents somehow view fraudulent resources as equal to real ones, "alternative" medicine as equal to real medicine, and hate propaganda which gives them false hope as superior to truths which offers them real hope (if at the expense of accepting things they don't want to hear).

I don't get it. I really, literally, don't... at least on an emotional level. Intellectually, maybe (at least somewhat), but that's the difference between "knowing" and "understanding".

Unfortunately, postmodernism only accounts for part of the problem. Bigotry, normocentric bias, and countless other factors also contribute. The results, however, speak for themselves. Parents of newly-diagnosed children usually lack the ability to distinguish between legitimate and illegitimate resources. They are at their most desperate, their most confused, and their most emotional. They seek a helping hand from anyone who offers it... and rarely notice the metaphorical dagger aimed at their backs. They are prime victims for frauds and con-men.

Many of them get wiser as time passes. Many of them learn the skills they should have been taught from the beginning... but it's easy for irreparable harm to have been done by then. If they're lucky, they'll only have been scammed out of money. If they're less so... the potential dangers are difficult to underestimate. In countless ways and for countless reasons, fake help is worse than no help.

I'd be more than happy to help someone assemble a genuine, reliable resource list. I will not, however, help with this sort of "project".

On My Recent Conference Presentation

My Autreat presentation went pretty well, I think. I uploaded the slides to the conference's Yahoo group, if anyone's interested.

Or, alternately, feel free to ask and I'll send them to you.

On the flip side, things have been extraordinarily hectic here. Between an "interesting" (one of my professors has decided that deducting points from my grade for autistic literalism is acceptable behavior), being swamped with schoolwork, and being otherwise preoccupied, I haven't really been able to spare much energy for blogging.

That said, however, I really should have written more. Sorry.

In any case, I just realized that I'd only posted one of the two essays I sent in as supplementary material for my presentation. As such, I'm posting the other:

How does it harm autistics?

Pseudoscientific medicine intended to "cure autism" harms autistics in a wide variety of ways. First and most obviously, the treatments themselves are often harmful. The financial harm to families is often substantial, with many families spending simply absurd amounts of money – some even mortgaging their homes – to pay for "treatments" that can be considered fraudulent at best. Many pseudoscientific treatments require considerable effort to implement while delivering illusory or placebo-equivalent benefit (or even producing harm). Families become emotionally invested in the method, and are often incredibly disappointed when it doesn't work. Sometimes the family avoids this disappointment by seeking out ever deeper and darker depths of woo.

The acceptance of pseudoscientific medicine promotes substandard care due to undertrained practitioners who bypass the relevant licensure requirements. It imposes double-standards on pseudoscientific and scientific practitioners, standards which inevitably favor the pseudoscientists and undermine the constant efforts of scientific practitioners to improve standards of care. It provides false knowledge of how to deal with real problems, and encourages people to ignore, disregard, or remain ignorant of a wide variety of standards of medical and research ethics, and encourages default logic in treatment.

It provides countless confounds to research aimed at helping professionals understand and help autistics and interferes with the conducting of such research, making it harder for genuine scientists to recruit participants.

It encourages the reification of autism, demonizes our neurology, and acts to dehumanize autistics. It promotes a culture of desperation and prevents acceptance of our differences. It legitimatizes the exploitation of us and our neurology by various political groups. It even distracts from real issues and endlessly complicates the discussion on autism.

Perhaps it is more meaningful to ask, "How doesn't pseudoscientific medicine harm autistics?" It would certainly be a far shorter list.

It's worth noting that the list in the presentation itself was longer -- I added several items after I wrote the above. Sometimes "Gyah" doesn't quite cut it.

On Disease

As I've mentioned before, "disease" is defined: "an impairment of the normal state of the living animal or plant body or one of its parts that interrupts or modifies the performance of the vital functions, is typically manifested by distinguishing signs and symptoms, and is a response to environmental factors (as malnutrition, industrial hazards, or climate), to specific infective agents (as worms, bacteria, or viruses), to inherent defects of the organism (as genetic anomalies), or to combinations of these factors".

This seems rather straightforward, but it's decidedly not the conceptualization most people have of disease. Most people think of "disease" as equivalent to "infectious disease" -- the cold, the flu, and so on. The concept of disease, however, is much more expansive than this, covering such diverse conditions as broken bones, cancers, malnutrition, radiation poisoning, and countless other things.

Any good description of a disease has at least three key elements: etiology, symptomatology, and course. Some other commentators will add a fourth, prognosis, but I consider this a part of the course. Others may disagree, caveat lector, etc.

In other words, diseases are defined by what causes them, how you tell someone has them, and what happens to the people who have them. Many times, each of these factors can be incredibly complex or variable. Often, the lines between them are blurred. Medicine is anything but simple.

Very frequently, we don't know the course of a disease. This is especially true for a while after a disease process has been discovered: until the disease runs its course in someone, we don't know what to expect. For instance, we didn't know that Ebola hemorrhagic fever was fatal until people started dying from it (although, given some of the symptoms, we certainly had reason to suspect!). We know that it's not universally fatal because people have survived.

From here, discussions of the study of diseases' courses and prognoses rapidly get a great deal more complex (with discussions of prognostic factors, modified courses, and the like). While interesting and useful, further discussion really isn't needed to address the core issue of this essay -- which is just what makes something a disease.

While diseases are often grouped together by course in speech, this is almost always through adjectival modifiers (e.g. "fatal disease", "overnight bug", "crippling injury", etc.). Diseases are not defined in terms of their course, and the same disease can have drastically different courses depending on any number of factors (hence the complexity). This is fairly easy to intuitively grasp when illustrated: while some people survive pertussis infection without treatment, others die even with it. Some people recover completely from a simple fracture of the femur; some people never do. Either way, the disease is pertussis or a simple fracture of the femur, respectively.

So -- what about symptomatology? Again, the same illness can have different symptoms in different people (although this effect is less extreme than in the course). It's interesting to note that the symptoms of a disease often can be considered diseases in and of themselves (but they usually aren't thought of that way). Then there's the matter of complications of a disease... which, again, starts making things get really complex, really fast.

While symptomatology plays a huge role in diagnosis, it's not (usually) how we classify disease. Sure, we talk about symptoms a lot ("He has a fever","His stomach hurts", etc.), and we do occasionally group illnesses this way (e.g. chemical, thermal, and radiation burns -- which are grouped together because of large similarities in symptomatology and minor similarities in etiology)... but we mostly group things together in etiology.

In other words, etiology is the "most important" part of a disease -- what defines a disease and separates it from other diseases. Sure, there are diseases of unknown etiology. Keep this in mind for future discussions. It's important.

For My Upcoming Conference Presentation

The following was written for my upcoming conference presentation on pseudoscientific medicine. It is one of two essays which, collectively, make up my contribution to the conference's program packet. All links within the essay are added for this blog and not in the packet itself.

Throughout society, people are being constantly bombarded with unprecedented amounts of medical information. Unfortunately, much of this information is distorted or wrong… and most people don't have the ability to separate the good from the bad.

It doesn't help that making sense of medical information requires a good deal of expertise. There are entire disciplines of study within medicine dedicated to doing this, and it is quite possible to go to college and get a master's degree or even a Ph.D. in the study of doing so. Some of the most influential doctors in academic medicine today have done exactly this, granting them degrees in such seemingly esoteric disciplines as medical bioinformatics and biostatistics.

Any discussion on all of the ways that things can go wrong and misinformation can arise would need to be absurdly long – it happens in many and myriad ways, and even listing all of them could easily fill an entire book. This presentation is intended to cover one tiny subset of one tiny aspect of one tiny facet of a broader problem: the issue of autism-related pseudoscientific medicine – medicine and medicinal information within the field of autism which pretends to be based on science but actually isn't.

Medicine is commonly defined as the science or practice of the treatment of disease. While this seems fairly straightforward, it actually isn't – the concept of disease is complex, multifaceted, and often controversial. MedLine Plus provides the following definition:

Disease – An impairment of the normal state of the living animal or plant body or one of its parts that interrupts or modifies the performance of the vital functions, is typically manifested by distinguishing signs and symptoms, and is a response to environmental factors (as malnutrition, industrial hazards, or climate), to specific infective agents (as worms, bacteria, or viruses), to inherent defects of the organism (as genetic anomalies), or to combinations of these factors.

In other words, a disease is a harmful dysfunction – a "breakdown" of the body, regardless of its source. A traumatic injury is a disease. Heavy-metal poisoning is a disease (or, more accurately, a type of disease). Polio is a disease. Geneticists can't agree on just what a genetic disease is, but some genetic conditions are indisputably diseases.

As such, medicine is the study – or attempt – of keeping the body from breaking down. Medical views of autism must necessarily look at autism as some form of breakdown of the body: views that do not do this are not medical in nature.

Within scientific medicine, the ideal is to provide information and to practice based on critical evaluation of the sum totality of the available scientific knowledge on any given topic. Unfortunately, this is often not possible or practical in a clinical environment for a variety of reasons… but I have tremendous respect for those doctors who put in an earnest effort towards achieving this lofty goal.

Others simply practice the way they were taught to, or as experts recommend. They may parrot their lessons from back when they were in medical school, or simply repeat what various authorities tell them. This usually yields results which technically work – experts often know what they're talking about and medical schools usually teach effective treatments – but new research is always coming out; new developments occur on a regular basis; new findings constantly change the landscape of medicine; and experts, no matter how revered, are never infallible and are sometimes misunderstood. As such, people who practice this way often have information which is out of date, and are at heightened risk of error.

Some people eschew the framework of science entirely and attempt to heal or prevent illness through other means entirely. Ranging from Christian faith healers to psychics to traditional practitioners of Eastern medical systems, their advice has little to do with what we call "science". These systems range from the relatively harmless to the utterly destructive, from the daughter who prays in church in hopes that her mother will recover from illness to the African witch-doctor who tells desperate seekers of help that AIDS can be cured through sexual intercourse with a child.

And, finally, there is the subject of this presentation: those people who do not practice based on science, but simultaneously pretend to. Whether out of financial interest, political ideology, devout cronyism, or simple ignorance, their advice is usually poor, commonly ineffective, frequently bewildering, often harmful, and collectively stands as an ongoing threat to the lives and welfare of countless people throughout the world.

Welcome to the weird and wonky world of pseudoscientific medicine. For the sake of your health and sanity, you're probably better off if you don't move in.

On Freudian Psychoanalysis

As part of my theories and practice course, we're being asked to summarize the various theories and modalities of therapy by answering a series of questions. We started with classical Freudian psychoanalysis.

The following are the questions and my answers -- somewhat cleaned up.



1-How does the theory conceptualize the basic beliefs about people...does the theory see people as "good", "bad", neutral, capable of growth, proactive or reactive to the environment?

Based solely upon extremely low-quality evidence of dubious validity, Freud believed that we were unaware of the majority of our mind's content and essentially at the mercy of forces beyond our direct perception. As such, Freudian psychoanalysis views people as the deterministic result of conflicts between postulated and reified constructs that exist within a non-falsifiable system. To the extent that people are able to grow within this context, it is the result of the client coming to exert control over these constructs and derivative reified "forces".


2-How does the theory describe the function of personality..what is the purpose of our "personality"; what needs does the personality meet..?

In essence, the ego serves to regulate forces/instincts, to manage anxiety, to plan, and to maintain reality focus.


3-How does the theory describe the "structure" of personality -- what IS our personality; what does it consist of?

In essence, Freud believed that the "self" (ego) serves to mediate between a person's "higher" desires (superego) and "lower" desires (id). As such, one's personality is determined by one's ability to balance and control these often-reified constructs and resulting also-reified "forces".



4-How does the theory describe how we develop into a "normal person"?

Freud believed that there was one true course of development (all departures necessarily being harmful) which could be described as going through a series of "psychosexual stages". Specifically, one passes (or should pass) through the oral stage during infancy, the anal stage during early childhood, the phallic stage during preschool, the latency stage during early school-age, and the genital stage during adolescence and onward. The oral stage accounts for the ability to delay gratification and to trust others. The anal stage accounts for independence, the ability to manage and express negative emotions, and acceptance of personal power. The phallic stage accounts for sexuality. The latency stage accounts for socialization and the ability to form relationships. The genital stage, once reached, accounts for all post-adolescent development.


5-How does the theory describe how we develop into "abnormal" people?

If one is derailed from this one true path of healthy development, one develops a number of problems (which may or may not actually be problems). These include (but are not limited to) mistrust and rejection of others, an inability to form intimate relationships, obsession over rules, a lack of appropriate sexuality, and a lack of relationships.



6-How does the theory conceptualize the process of counseling? How does it work, in general?

Freud believes that one developed in therapy by coming to understand and believe in the existence of constructs of questionable validity (except, perhaps, as a metaphor) which describe phenomena which probably can't be appropriately generalized to them, as well as developing control over these phenomena ("achieving insight" or "strengthening the ego", respectively).



7-How does the theory conceptualize the specific techniques of counseling?

Generally speaking, the techniques of psychoanalysis include maintaining a consistent analytic framework and a reliable therapeutic environment, engaging in free association (i.e. having the client talk about whatever (s)he wants without inhibition) in order to allow the therapist to make logical leaps regarding what is within the client's questionably existent unconscious (i.e. interpretations) and to teach the client to accept these conclusions as real, engaging in possibly inaccurate analysis of the content of dreams for meaning which may or may not actually exist in order to teach the client to accept the conclusions of these analyses as accurate, helping the client to overcome any resistance to the acceptance of the therapist's view of who the client is and what the client's problems are, and engaging in possibly-inaccurate analysis of the feelings the client develops towards the therapist during this process (analysis and interpretation of transference).



8-How does the theory conceptualize the roles/responsibilities of the counselor?

Classical psychoanalysis views therapists as "blank screens" for clients to project their feelings for past individuals onto. If the therapist maintains a neutral demeanor and does not engage in self-disclosure, any feelings the client develops toward the therapist are largely assumed to be the client projecting feelings for other people onto the therapist. Additionally, the therapist must listen closely to the client as (s)he free-associates, analyze what is said, and occasionally make interpretations of what (s)he hears, teaching the client to accept the existence of the various constructs created by Freudian theory and to assign causal attribution for feelings and beliefs in a manner consistent with Freudian theory. By aligning the client's view of his self with the therapist's frame of reference and beliefs in Freudian theory, "progress" is achieved.



9-How does the theory conceptualize the roles/responsibilities of the client?

Generally speaking, the responsibilities of the client in a Freudian framework are to cooperate with he therapist as he engages in his responsibilities, to attempt to overcome resistance to his or her acceptance of the therapist's view of who the client is, and to help the therapist develop such a view based on analyses of dubious reliability and validity.



10-What is the utility of the theory...strengths, weaknesses, limitation, applicability?

While our text discusses a number of comparatively minor limitations, these are largely secondary to the lack of empirical validation for large portions of psychoanalytic theory, the non-falsifiable (and thus unscientific) nature of the psychoanalytic framework, the lack of adequate empirical validation of the benefits of therapy (I am unaware of even a single well-controlled RCT which shows a beneficial effect for Freudian psychoanalysis relative to simply having someone to talk to), the focus on teaching the client to accept the analyst's questionable analyses as accurate, the (occasionally realized) potential for severe harm due to this emphasis, and vague criteria for termination of therapy which require therapist/client agreement (and therefore are subject to the various financial disincentives for the termination of a therapist/client relationship).

In terms of strengths, psychoanalysis recognizes the possibility of bias due to a limited set of factors (e.g. countertransference, racial stereotypes) and attempts to teach therapists to counter these. It emphasizes the necessity of a therapist recognizing and accepting who he or she is, recognizes humans as individuals, and emphasizes the importance of understanding the client and the client's problems, and teaches about the importance of a person's history in determining their present. Additionally, it was chronologically the first of the major therapeutic modalities and many of its techniques have contributed to their development.

Also, the couch can be relaxing.