Today is, once again, Autistics Speaking Day. Through happy coincidence, it also happens to be part of the early voting period in my state's election cycle during a major national election.
I live in Florida. Those of you familiar with practical politics here in the US should have some idea of what this means regarding the significance of my vote.
Guess what? I chose to make my voice heard in a far more significant way than a mere blog post.
It took, as it happens, about forty minutes, most of which was spent in a line. For those of you who go, I recommend bringing a book -- the paper kind -- because the legality of cell phones and the like in voting areas is... well, an issue. It's illegal to use them here; no idea about elsewhere.
And, if the person reading this happens to be a politician? Yes, people with disabilities vote.
And that means that we can vote for (or against) you.
In the end, as I said, that's far more important than a mere blog post. Today, for me, was not just Autistics Speaking Day.
It was Autistics Voting Day.
Showing posts with label social issues. Show all posts
Showing posts with label social issues. Show all posts
Thursday, November 1, 2012
Sunday, July 22, 2012
On Child Abuse
One of the more annoying aspects of trying to comment on or understand legal matters, especially for someone like me who's neither a lawyer nor a legal professional, is that laws vary across jurisdictions. What is legal -- or illegal -- in one area is not necessarily legal or illegal in another.
This would be a lot less problematic if the law -- or legal research, for that matter -- was simple and/or straightforward. Simply put, it is not.
While child abuse is illegal in every state, the statutes vary. Even when they're the same or similar, the case law (or legal precedents) vary as well. In practical terms, this means that while child abuse is illegal in every state... the meaning of the term isn't the same in each.
For instance, in Michigan, the relevant definition (§ 722.622, for those of you interested in looking it up) reads:
Of course, this doesn't explain just what does (or doesn't) count as "nonaccidental" injury or "maltreatment". That's what case law is for.
I live in Florida, however, so the Florida statutes are of somewhat greater personal interest to me. This is especially true given the corollary of my residence: most of the kids I personally care about and have worked with live here, too.
Here, the statute (s. 827.03, for those of you who want to look it up -- or you can just go here) reads:
As always, however, there are points where the seemingly-straightforward law becomes ambiguous. For instance, what does it mean to "willfully torture" someone? Then there's the reasonableness standards which pop up throughout. Perhaps by necessity, there's a great deal of vagueness there.
One of the major purposes of case law is to clarify this vagueness. Unfortunately, however, case law is a tangled, overcomplicated mess at the best of times. I -- to be blunt -- hate having to delve into the topic.
This does not, however, mean that I am unwilling to do so. I just prefer to leave it to the professionals.
In fact, I am aware of a number of cases which impact on the definition provided above. I've actually read a couple of them in their entirety while researching a specific issue.
The first of these, Nicholson v. State, was decided by the Florida's Supreme Court in 1992. I will not bother detailing the circumstances of the case (they're extraordinarily disgusting, and listed in the decision I linked anyway), and the reasoning of the decision depends on a definition which has since been removed from the statute. That said, the court ruled that "willful torture" under the statute explicitly included acts of omission -- such as failure to provide food -- provided they were committed with the willful intent to cause unnecessary or unjustifiable pain or suffering.
The case also continues to be cited as precedent by other cases despite the statutory change.
The second of these, Cox v. State, was decided by the Second District Court of Appeal in 2009. A couple of the more relevant passages:
I leave further case-law research to the legal scholars... who are, frankly, generally far better at it than I am.
I bring all of this up because of the latest inane fad "treatment" for autism -- the bleach enema.
Giving your child an enema is very definitely an intentional act -- it's rather difficult to unintentionally take a bag and shove fluid up your child's posterior. In the case of bleach enemas, it also could reasonably be expected to result in physical or mental injury.
This means that, under section (b) of the definition above, the act of giving a child a bleach enema constitutes child abuse under Florida law.
Or, at least, that's my reading of the matter. As I noted before, I'm neither a lawyer nor a judge, so people don't -- and shouldn't -- particularly care about my opinion in legal matters. Anyone who has a different interpretation is more than welcome to elaborate on it or discuss it in the comments.
Does it, however, constitute aggravated child abuse? That's a thornier question, and the ultimate goal of my legal research. If the process includes aggravated battery, or actually causes "causes great bodily harm, permanent disability, or permanent disfigurement," then I believe it would.
If it doesn't? Maybe. It depends on the legal meaning of "willful torture" in this context, and that's fuzzy enough. I suppose it could easily depend on the lawyers involved.
You'll note that I'm including a lot of statements like "I believe" and "I suppose" here. I pretty much have to. There are reasons why I hate legal research. These are the sort of points which lawyers have been known to debate endlessly in courtrooms, and legal textbooks often take multiple chapters to answer them in the most circuitous and tentative ways imaginable.
In any case, the more interesting part of the definition is part (c). According to this, even actively encouraging people to commit child abuse constitutes child abuse in and of itself. I would argue that promoting bleach enemas as an autism treatment qualifies.
On top of all of this, we have Florida's mandated reporter statute. Without getting into the details, it requires people who know of or suspect child abuse to report it to a Florida abuse hotline (1-800-96-ABUSE). This requirement is (on the statutory level) taken quite seriously -- failing to make a report when required to do so is a third degree felony. Making a false report is also a criminal act (also a third-degree felony), but people acting in good faith are immune from prosecution.
What all of this means is that -- at least according to my own reading of the statute -- anyone who has reason to suspect that a child is being "treated" with bleach is legally required to call the hotline.
Whether the laws will actually be enforced in practice is an entirely different matter... and, frankly, one that I'm in no mood to discuss.
In large part, this mood goes back to the beginning of this blog post, where I noted that things vary by jurisdiction: I did not choose Michigan's laws as an example by random chance.
As I write this, I am looking at a letter, from the Michigan Department of Human Services, written on official letterhead... whose contents boil down to a statement that, under the Michigan Child Protection Law, repeatedly giving your child bleach enemas in the name of autism "treatment" does not qualify as child abuse.
Go figure.
This would be a lot less problematic if the law -- or legal research, for that matter -- was simple and/or straightforward. Simply put, it is not.
While child abuse is illegal in every state, the statutes vary. Even when they're the same or similar, the case law (or legal precedents) vary as well. In practical terms, this means that while child abuse is illegal in every state... the meaning of the term isn't the same in each.
For instance, in Michigan, the relevant definition (§ 722.622, for those of you interested in looking it up) reads:
'Child abuse' means harm or threatened harm to a child's health or welfare that occurs through nonaccidental physical or mental injury, sexual abuse, sexual exploitation, or maltreatment by a parent, a legal guardian, or any other person responsible for the child's health or welfare or by a teacher, a teacher's aide, or a member of the clergy.Alternately, there's another definition in § 722.602:
“Child abuse” means harm or threatened harm to a child's health or welfare by a person responsible for the child's health or welfare, which harm occurs or is threatened through nonaccidental physical or mental injury; sexual abuse, which includes a violation of section 145c of the Michigan penal code, Act No. 328 of the Public Acts of 1931, being section 750.145c of the Michigan Compiled Laws.
Of course, this doesn't explain just what does (or doesn't) count as "nonaccidental" injury or "maltreatment". That's what case law is for.
I live in Florida, however, so the Florida statutes are of somewhat greater personal interest to me. This is especially true given the corollary of my residence: most of the kids I personally care about and have worked with live here, too.
Here, the statute (s. 827.03, for those of you who want to look it up -- or you can just go here) reads:
(1) “Child abuse” means:
(a) Intentional infliction of physical or mental injury upon a child;
(b) An intentional act that could reasonably be expected to result in physical or mental injury
to a child; or
(c) Active encouragement of any person to commit an act that results or could reasonably be
expected to result in physical or mental injury to a child.
A person who knowingly or willfully abuses a child without causing great bodily harm, permanent disability, or permanent disfigurement to the child commits a felony of the third degree, punishable as provided in s. 775.082, s. 775.083, or s. 775.084.
(2) “Aggravated child abuse” occurs when a person:
(a) Commits aggravated battery on a child;
(b) Willfully tortures, maliciously punishes, or willfully and unlawfully cages a child; or
(c) Knowingly or willfully abuses a child and in so doing causes great bodily harm, permanent
disability, or permanent disfigurement to the child.
A person who commits aggravated child abuse commits a felony of the first degree, punishableFrankly, I like the Florida statute far better than I do the Michigan equivalent. This is for a variety of reasons... but that's an entirely different discussion.
as provided in s. 775.082, s. 775.083, or s. 775.084.
As always, however, there are points where the seemingly-straightforward law becomes ambiguous. For instance, what does it mean to "willfully torture" someone? Then there's the reasonableness standards which pop up throughout. Perhaps by necessity, there's a great deal of vagueness there.
One of the major purposes of case law is to clarify this vagueness. Unfortunately, however, case law is a tangled, overcomplicated mess at the best of times. I -- to be blunt -- hate having to delve into the topic.
This does not, however, mean that I am unwilling to do so. I just prefer to leave it to the professionals.
In fact, I am aware of a number of cases which impact on the definition provided above. I've actually read a couple of them in their entirety while researching a specific issue.
The first of these, Nicholson v. State, was decided by the Florida's Supreme Court in 1992. I will not bother detailing the circumstances of the case (they're extraordinarily disgusting, and listed in the decision I linked anyway), and the reasoning of the decision depends on a definition which has since been removed from the statute. That said, the court ruled that "willful torture" under the statute explicitly included acts of omission -- such as failure to provide food -- provided they were committed with the willful intent to cause unnecessary or unjustifiable pain or suffering.
The case also continues to be cited as precedent by other cases despite the statutory change.
The second of these, Cox v. State, was decided by the Second District Court of Appeal in 2009. A couple of the more relevant passages:
Aggravated child abuse is largely determined on a case-by-case basis rather than with bright-line rules as to what conduct does and does not constitute aggravated child abuse. Herbert v. State, 526 So.2d 709, 712 (Fla. 4th DCA 1988). This flexibility is critical to allow for consideration of such factors as the age of the victim, the frequency of prohibited conduct, and other circumstances relevant to a particular case. It is clear, however, that “the first-degree felony of aggravated child abuse [is] preserved for truly aggravated circumstances.”
However, this court has held that aggravated child abuse for malicious punishment is reserved for “cases involving parental discipline that results in great bodily harm or permanent disabilities and disfigurements or that demonstrates actual malice on the part of the parent and not merely a momentary anger or frustration.” McDonald, 785 So.2d at 646
I leave further case-law research to the legal scholars... who are, frankly, generally far better at it than I am.
I bring all of this up because of the latest inane fad "treatment" for autism -- the bleach enema.
Giving your child an enema is very definitely an intentional act -- it's rather difficult to unintentionally take a bag and shove fluid up your child's posterior. In the case of bleach enemas, it also could reasonably be expected to result in physical or mental injury.
This means that, under section (b) of the definition above, the act of giving a child a bleach enema constitutes child abuse under Florida law.
Or, at least, that's my reading of the matter. As I noted before, I'm neither a lawyer nor a judge, so people don't -- and shouldn't -- particularly care about my opinion in legal matters. Anyone who has a different interpretation is more than welcome to elaborate on it or discuss it in the comments.
Does it, however, constitute aggravated child abuse? That's a thornier question, and the ultimate goal of my legal research. If the process includes aggravated battery, or actually causes "causes great bodily harm, permanent disability, or permanent disfigurement," then I believe it would.
If it doesn't? Maybe. It depends on the legal meaning of "willful torture" in this context, and that's fuzzy enough. I suppose it could easily depend on the lawyers involved.
You'll note that I'm including a lot of statements like "I believe" and "I suppose" here. I pretty much have to. There are reasons why I hate legal research. These are the sort of points which lawyers have been known to debate endlessly in courtrooms, and legal textbooks often take multiple chapters to answer them in the most circuitous and tentative ways imaginable.
In any case, the more interesting part of the definition is part (c). According to this, even actively encouraging people to commit child abuse constitutes child abuse in and of itself. I would argue that promoting bleach enemas as an autism treatment qualifies.
On top of all of this, we have Florida's mandated reporter statute. Without getting into the details, it requires people who know of or suspect child abuse to report it to a Florida abuse hotline (1-800-96-ABUSE). This requirement is (on the statutory level) taken quite seriously -- failing to make a report when required to do so is a third degree felony. Making a false report is also a criminal act (also a third-degree felony), but people acting in good faith are immune from prosecution.
What all of this means is that -- at least according to my own reading of the statute -- anyone who has reason to suspect that a child is being "treated" with bleach is legally required to call the hotline.
Whether the laws will actually be enforced in practice is an entirely different matter... and, frankly, one that I'm in no mood to discuss.
In large part, this mood goes back to the beginning of this blog post, where I noted that things vary by jurisdiction: I did not choose Michigan's laws as an example by random chance.
As I write this, I am looking at a letter, from the Michigan Department of Human Services, written on official letterhead... whose contents boil down to a statement that, under the Michigan Child Protection Law, repeatedly giving your child bleach enemas in the name of autism "treatment" does not qualify as child abuse.
Go figure.
Tuesday, November 1, 2011
On Bad Parents
Today is Autistics Speaking Day. To follow in the tradition of last year, I'm going to take the opportunity to talk about something that I wouldn't normally blog about. Be forewarned that this is not -- at all -- a pleasant topic. In fact, it's downright disturbing. If you are a parent to an autistic child, this will be particularly disturbing to you. If you are autistic yourself, it will be equally disturbing in a completely different way. Be forewarned.
During that exchange, a lot of issues -- many of which are very important -- relating to the parent/self-advocate divide in the modern autism world were discussed. By and large, the parents present were interested in helping their child and were willing to respect and try to understand the viewpoints and interests of autistic people. And, while I can't directly confirm this, I strongly suspect (and have no reason to disbelieve) that those parents love their children and wanted to do what they could to help them. I believe (and have no reason to disbelieve) that, to those parents, their involvement in autism issues was not primarily about themselves or their personal interests and desires, but rather about trying to raise their children.
One fact, however, was not mentioned during that dialogue, and it's a simple fact that while the above can almost certainly be said about the parents who participated in the Dialogues, it certainly cannot be said about all parents. Put another way, not every parent of an autistic child is a good parent.
"Good" and "bad" are relative, of course, and everyone makes mistakes. I'm not trying to demonize or stereotype the parents of autistic children here.
Still, there's an attitude among parents' groups characterized by the presumption that each parent loves their child and is generally trying to raise their child as best they can. There are three real problems with this -- and I've already discussed the first one. Specifically, parents are human and thus fallible. Even if a parent is trying to raise their child as best they can, this doesn't mean that they are.
The second problem with that presumption is far simpler. It simply isn't true.
I know I've repeated myself here. This was deliberate. The point needs to be driven in -- preferably with a metaphorical sledgehammer.
For years, I've been reading coverage of parents doing truly awful things to their children. Take for instance, Marguerite Famolare, as quoted in this article about the Judge Rotenberg Center. According to her, the center's systematic torture of her child is great -- after all, if she shows him the remote control to his shock harness:
He'll automatically comply to whatever my signal command may be, whether it is 'Put on your seatbelt,' or 'Hand me that apple,' or 'Sit appropriately and eat your food,'" she says. "It's made him a human being, a civilized human being.
I have to rather strongly disagree with her definition of humanity. Beyond this, I think that the quote speaks for itself.
Then there's the case of Karen McCarron, who I recently learned is trying to appeal her well-deserved sentence and get a new trial. Her story is, in a way, much simpler to explain -- she murdered her daughter and blamed her actions on said child's reified neurology. According to her lawyer, McCarron believed that Jesus would bring her child back, sans certain reified aspects of how she learned and experienced the world.
I did not select these two cases at random. While I could have picked from a lot more, including many not on that list (which is rather outdated at this point), they serve as illustrations of the fact that there are some phenomenally bad parents out there. Some of said parents have autistic children.
More importantly, however, they serve to illustrate another factor -- the ways in which certain attitudes prevalent in the autism world can be used as justifications for truly monstrous acts towards autistic people. When I object to, for instance, the reification of autism, I am doing so for damned good reason. When I talk about psychosocial stigma, I am not talking about something even remotely close to trivial.
Finally, these cases are public -- they have public documentation which I can link to. Trust me, I have a lot of examples from personal experience. I've spent a surprisingly large amount of my professional life trying to clean up the messes that bad parents and poor parenting decisions (of various sorts) have left behind.
The third problem with the attitude I referenced is central to the attitude itself and not the underlying beliefs. There is an old saying that "sympathy for the guilty is treason to the innocent." The saying -- and the underlying meaning behind it -- apply here. Yes, parents of autistic children often function without adequate support, are stressed, are under incredible pressures, etc. If, however, we choose to allow this to detract even one iota from our condemnation of this sort of parent's inexcusable actions, if we say that Karen McCaron's actions were "really about a lack of support" or some such, we are essentially arguing that the act of torturing or murdering an innocent child is excusable.
I disagree with this in the strongest terms possible.
Such actions need to be condemned. We, as a community, owe that duty to Karen McCaron's and Marguerite Famolare's victims.
I have, at this point, been writing this blog entry all day -- essentially dropping everything else in my life to do so. It is, however, phenomenally difficult for me to do so. As I type this sentence, it is 6:17 in the evening. I have been writing this almost since I finished breakfast.
As the amount of time I've spent on this text implies, this is not an easy topic for me to write about. I don't even like to think about parents such as those two. I originally intended to write far more about them than I did... but gave up on several (actually rather important) points simply because I couldn't bring myself to write them. In fact, I even dropped one major and prominent example of bad parenting from my list -- simply because I didn't think I could stand writing out another paragraph detailing such behavior. I know for a fact that I will regret that decision.
I would love to think that every parent was a good one, that (all) parents could be trusted to act in their child's best interests, and that we could count on parental love to ensure that our parents would be our allies.
Unfortunately, I know all too well that this is simply not true.
Monday, September 12, 2011
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.
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".
Saturday, January 8, 2011
And Then There's These... People
When you work with one of the most vulnerable populations in America, you quickly start to realize just how nasty the human race can be. While I don't know who said it, there's a rather famous quote which about sums it up: "There is no such thing as an inhuman act, for there is no act so vile that you cannot find a human willing, even eager, to commit it."
Some of the things I have seen defy description. The things I've seen news coverage of are worse. This was rather spectacularly demonstrated yesterday, with an article from the LA Times that highlights this in a truly awful fashion.
I've tried to write out the story several times. I can't, as hard as I try. As such, I'll just quote the article -- which really does speak for itself.
As I said, the story speaks for itself. The photos can be found here.
Some of the things I have seen defy description. The things I've seen news coverage of are worse. This was rather spectacularly demonstrated yesterday, with an article from the LA Times that highlights this in a truly awful fashion.
I've tried to write out the story several times. I can't, as hard as I try. As such, I'll just quote the article -- which really does speak for itself.
The package mysteriously left at Los Angeles County Sheriff's headquarters shocked even some of the department's most grizzled detectives: A hundred hours of video footage showing severely disabled women, many in diapers, being sexually assaulted by anonymous men.
The attacks appeared to have taken place at residential care centers, authorities said, and most of the attackers are believed to be employees. One suspect appears to be a paraplegic patient, hoisting himself off his wheelchair, before removing his diaper and that of his victim's, and beginning his assault.
The footage, dropped off in March, has left detectives with few leads. Though authorities are confident the scenes were shot in residential care facilities, it's unclear if they are located in Los Angeles County. Much of the footage is so grainy that only the faces of four of the estimated 10 men could be made out.
Authorities Thursday asked for the public's help in identifying the men, releasing screenshots and composite drawings of the attackers.
"Maybe they can identify these people," said Sgt. Dan Scott. "Maybe they can identify the room."
Detectives are also hoping the tipster who dropped off the package will come forward. The footage left at sheriff's headquarters in Monterey Park came with a note explaining how he discovered the video. He had been commissioned by a man to scrub a computer hard drive, but before he did, he burned 100 hours of video files onto DVDs.
Detectives said the women in the videos appear to be between 20 and 40 years old, some appearing almost entirely unresponsive. The men appear to also be between 20 and 40. The footage, detectives said, appears to be a collection, with some men appearing in more than one scene. Some of the footage was shot with a handheld camera, with the rest appearing to be captured by a security camera, detectives said.
Enhancing and analyzing the video took several months, authorities said. Detectives have not contacted local residential care centers yet, an official said.
Anyone with information is asked to call Special Victims Bureau detectives at (866) 247-5877. Anonymous tipsters can call (800) 222-TIPS.
As I said, the story speaks for itself. The photos can be found here.
Friday, January 7, 2011
On Wakefield and Fraud
I was aware that a medical society tribunal in the UK had found problems with the MMR study but I was unaware that a court of law, or governing medical society tribunal, had found Wakefield guilty of the serious offence of fraud.If anyone knows which court of law, or governing medical society tribunal, found Dr. Wakefield guilty of fraud could you post a link to this site please?
The "medical society tribunal" Doherty refers to was the British General Medical Council, (or "GMC"; see their website here). They are hardly a mere "medical society tribunal" -- they're a governing body established by legislative action. They have a direct government mandate... and the legal authority to control who can and cannot practice medicine in the UK.
I suppose you could call them a "governing medical society tribunal", per Mr. Doherty's instructions. I would not: they're a regulatory body tasked with a judicial function. They are not part of any medical society (although the memberships certainly overlap!).
In its sanction against Dr. Wakefield, the GMC found (among other things):
The children described in the Lancet paper were admitted for research purposes under a programme of investigations for Project 172-96 and the purpose of the project was to investigate the postulated new syndrome following vaccination. In the paper, Dr Wakefield failed to state that this was the case and the Panel concluded that this was dishonest, in that his failure was intentional and that it was irresponsible. His conduct resulted in a misleading description of the patient population. This was a matter which was fundamental to the understanding of the study and the terms under which it was conducted.In other words, the GMC found that Wakefield lied repeatedly in the Lancet paper. Moreover, he concealed financial interests in the results being what they were:
In addition to the failure to state that the children were part of a project to investigate the new syndrome, the Lancet paper also stated that the children had been consecutively referred to the Department of Paediatric Gastroenterology with a history of a pervasive developmental disorder and intestinal symptoms. This description implied that the children had been referred to the gastroenterology department with gastrointestinal symptoms and that the investigators had played no active part in that referral process. In fact, the Panel has found that some of the children were not routine referrals to the gastroenterology department in that either they lacked a reported history of gastrointestinal symptoms and/or that Dr Wakefield had been actively involved in the process of referral. In those circumstances the Panel concluded that the description of the referral process was irresponsible, misleading and in breach of Dr Wakefield’s duty as a senior author.
The statement in the Lancet paper that investigations reported in it were approved by the Royal Free Hospital Ethics Committee when they were not, was irresponsible.
Regarding the issues of conflicts of interest, Dr Wakefield did not disclose matters which could legitimately give rise to a perception of a conflict of interest. He failed to disclose to the Ethics Committee and to the Editor of the Lancet his involvement in the MMR litigation and his receipt of funding from the Legal Aid Board. He also failed to disclose to the Editor of the Lancet his involvement as the inventor of a patent relating to a new vaccine for the elimination of the measles virus (Transfer Factor) which he also claimed in the patent application, would be a treatment for inflammatory bowel disease (IBD).
In summary of their findings, the GMC wrote:
The Panel made findings of transgressions in many aspects of Dr Wakefield’s research. It made findings of dishonesty in regard to his writing of a scientific paper that had major implications for public health, and with regard to his subsequent representations to a scientific body and to colleagues. He was dishonest in respect of the LAB funds secured for research as well as being misleading. Furthermore he was in breach of his duty to manage finances as well as to account for funds that he did not need to the donor of those funds. In causing blood samples to be taken from children at a birthday party, he callously disregarded the pain and distress young children might suffer and behaved in a way which brought the profession into disrepute.
As such (among other things):
The Panel concluded that Dr Wakefield’s shortcomings and the aggravating factors in this case including in broad terms the wide-ranging transgressions relating to every aspect of his research; his disregard for the clinical interests of vulnerable patients; his failure to heed the warnings he received in relation to the potential conflicts of interest associated with his Legal Aid Board funding; his failure to disclose the patent; his dishonesty and the compounding of that dishonesty in relation to the drafting of the Lancet paper; and his subsequent representations about it, all played out against a background of research involving such major public health implications, could not be addressed by any conditions on his registration.
In short, Wakefield was found to be a dirty, rotten liar who faked data for publication in The Lancet. In common scientific parlance, they found that the paper was a classic example of academic fraud.
Edit: Kev of LBRB does an excellent analysis of the issue here, focusing less on the legal findings and more on illustrating the fact that Wakefield's paper was fraudulent.
Friday, December 31, 2010
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.
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.
Monday, December 27, 2010
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):
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.
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.
Thursday, November 18, 2010
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:
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:
And, finally:
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?
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.
Monday, November 1, 2010
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.
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
Saturday, October 16, 2010
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"):
And then there's Wiznitzer's testimony:
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.
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.Two clarifications: "The events described" were the vote-out incident. The same is true of "the events of 5-21-08".
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.
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.
Saturday, October 9, 2010
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:
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."
Tuesday, September 21, 2010
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:
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:
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).
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.
Sunday, September 19, 2010
On Stereotypes
One of the kindest, most generous people I know is a homosexual, atheistic skeptic. I mention this not because I'm an atheist (I'm not, certain people's claims to the contrary aside) nor because I'm gay (I'm not), nor because I'm a skeptic (this, at least, I am). I mention this because "kind" and "generous" are very much not part of the stereotypes surrounding atheists, homosexuals, or skeptics.
Despite the stereotypes, however, he is all of these things. In fact, the entire list of traits works together quite well: his skepticism, for instance, means that he investigates charities before he gives to them and tries to make sure that his donations actually go to the people he's supposed to be helping. He's skeptical about the charities he donates to precisely because he genuinely cares. I cannot say the same for many people who donate to religious charities, who often care more about appearances or ideology than genuinely helping.
The prevalent stereotypes, however, would pidgeonhole him as the exact opposite of who he is: atheists are often seen as prototypical sinners, untrustworthy and criminal. Skeptics are seen as cynics at best (true skeptics are anything but). Homosexuals... let's not even go there.
Many of the people who know me will know precisely who I am talking about. There is even a possibility that the person I wrote about will read this blog entry some day. I am not, however, writing this to flatter him.
I am writing this to illustrate the point that stereotypes are often misleading. Worse, they are often wrong -- that is, they very often don't even have a genuine basis in fact, but rather are based solely on prejudice or incomprehension.
If this is the case, why do we persist in stereotyping? Especially now, as we're becoming increasingly aware of the manifold harms and errors perpetuated by this sort of thing -- why do it?
The sad truth of the matter is that, as best we can figure it out, stereotyping is the result of normal, adaptive cognitive mechanisms being used in ways that just don't make sense. People, in general, categorize other people in ways that just don't make sense... and then use these categories to reach conclusions that make even less sense.
While I sadly know the answer to why we do it (it's tied up into the normally-adaptive cognitive processes most people rely on to function), the fact of the matter is that we should be smarter than this. We can be smarter than this.
Just question yourself -- repeatedly. Be careful of over-generalization. Realize that in-group differences almost always exceed between-group differences. Keep in mind that people are people, regardless of anything else. Understand that you can misunderstand. Question yourself -- it bears repeating. Understand that statistical significance and practical significance are very different. Realize that "groups" of people -- however they're defined -- are almost always "fuzzy" statistical constructs. Watch out for logical fallacies. Don't expect perfection, mind... but always try to be right.
Despite the stereotypes, however, he is all of these things. In fact, the entire list of traits works together quite well: his skepticism, for instance, means that he investigates charities before he gives to them and tries to make sure that his donations actually go to the people he's supposed to be helping. He's skeptical about the charities he donates to precisely because he genuinely cares. I cannot say the same for many people who donate to religious charities, who often care more about appearances or ideology than genuinely helping.
The prevalent stereotypes, however, would pidgeonhole him as the exact opposite of who he is: atheists are often seen as prototypical sinners, untrustworthy and criminal. Skeptics are seen as cynics at best (true skeptics are anything but). Homosexuals... let's not even go there.
Many of the people who know me will know precisely who I am talking about. There is even a possibility that the person I wrote about will read this blog entry some day. I am not, however, writing this to flatter him.
I am writing this to illustrate the point that stereotypes are often misleading. Worse, they are often wrong -- that is, they very often don't even have a genuine basis in fact, but rather are based solely on prejudice or incomprehension.
If this is the case, why do we persist in stereotyping? Especially now, as we're becoming increasingly aware of the manifold harms and errors perpetuated by this sort of thing -- why do it?
The sad truth of the matter is that, as best we can figure it out, stereotyping is the result of normal, adaptive cognitive mechanisms being used in ways that just don't make sense. People, in general, categorize other people in ways that just don't make sense... and then use these categories to reach conclusions that make even less sense.
While I sadly know the answer to why we do it (it's tied up into the normally-adaptive cognitive processes most people rely on to function), the fact of the matter is that we should be smarter than this. We can be smarter than this.
Just question yourself -- repeatedly. Be careful of over-generalization. Realize that in-group differences almost always exceed between-group differences. Keep in mind that people are people, regardless of anything else. Understand that you can misunderstand. Question yourself -- it bears repeating. Understand that statistical significance and practical significance are very different. Realize that "groups" of people -- however they're defined -- are almost always "fuzzy" statistical constructs. Watch out for logical fallacies. Don't expect perfection, mind... but always try to be right.
Thursday, September 16, 2010
On Donald T
As part of my studies in autism, I've read Kanner's original article multiple times. The case that I've paid the most attention to -- and studied across multiple articles -- is that of "Donald T"... in large part because it was the first. I've followed it across multiple papers, and even spent a while last year looking for any and all available information regarding him in the literature. The most recent information, however, was in a 1971 followup -- after this, there was no real information on what happened to the first person to ever be diagnosed as autistic.
That changed recently. As I found out this morning, reporters for the editorial and literary magazine The Atlantic (which has a really long and interesting history) managed to track Donald T down and wrote a genuinely fascinating article about him.
Go. Read. Then come back.
Finished? Good.
The article's nowhere near perfect. It gets some things wrong. It has some bad information.
Still, Donald himself is the main point... and I don't think that needs any further remark. The main takeaway message remains: At the age of 77, Donald Gray Triplett, the first person to ever be diagnosed as autistic, is doing just fine.
That changed recently. As I found out this morning, reporters for the editorial and literary magazine The Atlantic (which has a really long and interesting history) managed to track Donald T down and wrote a genuinely fascinating article about him.
Go. Read. Then come back.
Finished? Good.
The article's nowhere near perfect. It gets some things wrong. It has some bad information.
Still, Donald himself is the main point... and I don't think that needs any further remark. The main takeaway message remains: At the age of 77, Donald Gray Triplett, the first person to ever be diagnosed as autistic, is doing just fine.
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