On Absurdly Poor Criticism And Advocate Misconduct, Part One

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

On Autistics Speaking Day

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.

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:

'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, punishable
as provided in s. 775.082, s. 775.083, or s. 775.084.

Frankly, 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 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.

On Things That Won't "Cure" Autism

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

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

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

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

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

 
 This is a highly incomplete list.

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

Take this as you will.

Edit: Was corrected on a relatively minor point.

On 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.

Towards the end of September, the blog The Thinking Person's Guide to Autism hosted a series of exchanges referred to on-site as the Self-Advocate/Parent Dialogues. If you haven't read it, I strongly recommend you do so -- including the comments. Yes, I know that's ten-eleven (depending on how you count) blog entries, many of which have an inordinate number of comments. I make this recommendation anyway -- and recommend it strongly.

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.

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.

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.

On Wakefield and Fraud

On his blog, the rather well-known blogger and commenter, Harold Doherty, writes:

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 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.

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:

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.

Demon-Haunted Inevitability

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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

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

The Bigotry Defense?

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

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

No, I'm not joking.

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

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

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

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

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

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

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

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

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

And then there's Wiznitzer's testimony:

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

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

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

Some Links That May Have Passed the Neurodiversity Community By

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

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

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

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

Part 1/Ross:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

(Lots of credit-seeking.)

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

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

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

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

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

On 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.

On Freudian Psychoanalysis

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

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



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

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


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

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


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

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



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

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


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

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



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

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



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

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



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

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



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

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



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

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

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

Also, the couch can be relaxing.

On Psychiatry

While I spent most of my last post defending the medical establishment from ill-conceived and ignorant accusations, this defense doesn't mean that I believe that modern medicine is perfect or that there aren't very serious criticisms which can be addressed towards it. I just generally prefer for the criticisms to be valid ones.

In the general spirit of appreciating such criticism, I would like to point out two very good lay-level articles on the topic which I recently came across. The first, a Newsweek piece, focuses on the issue of antidepressant drugs and the criticisms of Doctors Irving Kirsch and Guy Sapirstein towards this particular branch of psychiatry.

Of course, like any lay-level introduction to a scientific issue, it must also cover many of the myriad interconnecting issues and debates which characterize the discussion... and it does a truly spectacular job. It manages to cover publication bias, the difference between statistical and clinical significance (in one particular application), the ethical confusion surrounding antidepressant use, the distinction between exogenic and endogenic depression, and many other issues in a way that should be easily accessible to a lay audience.

The second article, from the New Yorker, covers a number of the criticisms that have been leveled against psychiatry as a whole... and on the history thereof. It's an excellent, excellent read, and one which I highly recommend.

Between the two articles, however, two things are highly worthy of note, especially in the context of Mr. Sequenzia's comments:

1. Most of the people cited in the articles as making these criticisms are highly respected professors and major parts of the "establishment". Unlike Dr. (Andrew) Wakefield, however, they have decided to follow the rules of science in making those criticisms and have not horrifically violated the established standards of research ethics.
2. Many of the criticisms raised in the context of depression within the New Yorker piece can be applied just as easily to autism... or many of the other diagnoses within the DSM.

Keep that last point in mind when you read the second article.

On Disability, Accessability, and Analogies

While recovering from my knee operation, I've been thinking about a lot of things. Some of these (e.g. my questioning how the Hell the character of Gregory House is able to function on the meds he takes) have been ultimately trivial and unimportant. Others (e.g. my thoughts on grapefruit/orange hybridization) would likely only make sense to Floridians who have experience with both joint surgery and altered states of consciousness.

Given the state of mind I was in for a while, I am very lucky that I didn't try to peel my knee.

One of the circumstances I've faced, however, is probably a bit more significant... if a great deal more mundane. As it functions as a pretty good analogy to a wide variety of disability-related issues (mostly those centered around accessability), however, I'm sharing it here.

My house has one portible phone. All of the remainder are traditional wired units. On the ninth (a week after my operation), I was sitting in my little recovery area when the house phone rang. The portible unit (which was by me) had run out of batteries, however, so I had to disconnect myself from the machines I was hooked into, grab my crutches, and hobble over to the nearest traditional phone as quickly as I could (a distance of about 20 to 30 meters, give or take). I didn't make it on time and barely missed the call.

Then I found out the hard way that I hadn't brought my cell phone with me. It, still within easy reach of my starting point, began to ring. I attempted to hobble back, but again couldn't make it on time.

Ironically enough, the calls both turned out to be the doctor who'd performed the operation which had led to me being unable to answer. Had I been able to pick up, it might have saved me some of the grief which I am facing at the moment regarding an unexpected complication in my recovery.

Suffice it to say that cold is good for swelling, but too much of it leads to freezer burns (not major ones, thankfully).

Anyway.

Had the call come via my cell phone first (which was much more accessable in both the literal and disability studies senses), I would have been able to simply reach over and answer. Instead, I wound up failing to answer due to my attempt to try the less acessable solution first.

As I said, it's an analogy. Take it as you will. I could probably write up a better article on this, but my rehab efforts are exhausting me and I have a lot of other things on my mind. One of the banes of blogging, that last one is...

Some Recent Advocacy Efforts

Fellow bloggers Kim Wombles, Thelma, and Louise have started an effort to form a new autism organization, one which actually looks pretty good... if still young. I hold out great hopes for their efforts.

Edit: I somehow managed to miss Kathleen's involvement with the project. She deserves a mention as well. Again -- good luck!

At the same time, the anti-disease group PKIDs has released a pretty spectacular set of videos on the horrific costs that the decision not to vaccinate can impose on families. Sullivan of LBRB has blogged on them here, complete with embedded video.

In his post, however, Sullivan wrote the following:

For any who wish to comment that this has nothing to do with autism, I agree. Unfortunately, the autism community is one of the biggest sources of misinformation about vaccines and vaccine preventable diseases. If I can help PKIDs a bit with this post, I see that as a good thing.

I have to somewhat disagree. Ideally, he is right -- this shouldn't have anything to do with autism. His comment that the autism community is one of the biggest sources of misinformation about vaccines and vaccine preventable illnesses, however, hits the nail on the head.

The instant vaccines entered the autism discussion, the two became connected. Despite the fact that the connection is purely artificial, a product of quackery and delusion, it is very real... and very horrifying.

Watch those videos. I'm particularly fond of the Hib, Hepatitis, and pneumococcal disease videos, but the others are generally pretty good as well.

This is what groups like DAN and Generation Rescue are telling people to risk rather than accept a percieved risk of having their kids turn out like us. This is what they are telling people is better than autism when they advise parents not to vaccinate their children.

Frankly, I find that phenominally insulting.

Edit: Corrected a typo ("However" was missing an e).

"I Am Autism"

Autism Speaks's latest video, "I Am Autism", is the single most offensive thing I've ever seen.

I'm not going to get into the issue of Autism Speaks's history of excluding autistic people, its repeated patronization of us, its... well, you get the idea. I'm just going to confine myself to the video.

I will, however, comment that I think this despite the fact that I grew up in the South Florida Jewish community and have read Mein Kampf in its entirety. I am also quite familiar with the Protocols of the Elders of Zion and have seen a translated brochure for Stalin World. During high school, I made something of a study of Soviet propaganda. Keep this in mind when I say that "I Am Autism" is the most offensive thing I've ever seen. It's that bad.

As I've tried to explain before, you cannot separate autism from autistic individuals. Anything said about autism is said about autistic people. Anything said about autism on a demographic level is said about the existence of us as a group; anything said about autism in a child is said about that child.

The following is, other than some changes in number (I changed a few uses of "I" to "we" for gramatical reasons) identical in meaning to the video. Hopefully, it will make just why the autistic community is so outraged a bit more apparent to anyone reading it:

(In sinister tones)

I am the existence of autistic people.

I am visible among your children, but I am invisible to you until it is too late.

I know where you live -- and guess what? I live there, too.

I hover around all of you. I know no color barrier, no religion, no morality, no currency. I speak your language fluently, and with every voice I take away, I acquire yet another language.

I work very quickly. The existence of autistic people works faster than pediatric AIDS, cancer, and diabetes combined.

And, if you're happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain.

I don't sleep, so I'll make sure you don't, either.

Having an autistic child will make it virtually impossible for your family to easily attend a temple, a birthday party, a public park, without a struggle, without embarassment, without pain.

You have no cure for me. Your scientists don't have the resources, and autistic people relish their desperation.

Your neighbors are happier to pretend that I don't exist. Of course, until it's their child who's autistic.

We are autistic people. We have no interest in right or wrong. We derive great pleasure out of your loneliness; we will fight to take away your hope. We will plot to rob you of your children and your dreams. We will make sure that every day you wake up, you will cry, wondering "Who will take care of my child after I die?"

And the truth is, we are still winning and you are scared, and you should be.

I am the existence of autistic people. You ignored me. That was a mistake.

And that's the first half. To try and translate the second, I'd need to change the semantics a bit more. Suffice it to say that it's a determined statement that people are getting together to rip their actual child out of the "shell" that we are.

In other words, it's based on the implicit philosophy that we're not real people and that they need to make us into real people.

Gyah.

Edit: Katie Miller did a brilliant parody of the video here. I'm still laughing.

On Science Fiction and Identity, Part One

What is it that makes us who we are?

Really -- it's an important question. Philosophers have been debating this for milennia... in large part because they've realized just how inportant it is. It's not a simple question. It's not an easy question. It's not a question that we have a definitive answer for.

Tackling this question involves grappling with the deepest aspects of philosophy, to struggle with the essence of humanity, and to seek answers that may not even exist.

It's also not a question that science can answer. Sure, science can inform the debate -- I've long since lost count of the number of studies I've seen on issues related to this -- but it's fundamentally a philosophical question, not a scientific one.

Today we have three major groups exploring this issue, all from different angles and all producing different sorts of results. The first two -- philosophers and scientists -- are pretty obvious. The third category -- science fiction authors (some fantasy authors do this, too, but let's not get too deep into the issue of the blur between the genres) -- are a pretty uniquely modern phenomenon, but have been quietly (or, occasionally, not so quietly) exploring a number of complex philosophical issues in the background of our culture for quite a while now. Many of these explorations have to do with issues of identity and humanity.

They've even been doing it in a manner that's a lot more accessable to the "average joe" than most philosophical treatises.

I'm not saying that a Star Trek episode is as important in the grand scheme of things as a major philosophical treatise, mind. I'm just saying that they often explore the same issues, albeit from different angles.

It's rather akin to how the ancient Greek morality plays explored the philosophy of ethics, really.
I'm also not saying that every science fiction story qualifies. Many don't.

The fundamental question explored by science fiction, however, is "What if?" It is from this angle that science fiction authors address the question of what makes us who we are.

While a philosopher explores issues of what makes us who we are, he does so through careful argument and discourse. When a scientist does so, he seeks factual answers and reasons based on emperical evidence. When a science fiction author does so, he sets up a scenario and shows the (hypothetical) consequences.

The products of this sort of exercise vary from beloved classics to pieces of pop culture. They have been known to lead to some pretty interesting (if obscure) philosophical debates between fans... and have a considerably higher "geek appeal" factor than Descartes.

Sorry, Rene, but your work just doesn't have what it takes to be debated by Vulcan-eared Trekkies at a geek convention. Roddenberry has you beat on that count... and no, I don't use "geek" as an insult. I've earned my geek stripes, thank you very much.

And, of course, all of this begs the question -- why am I bringing this up on an autism blog?

Well, I plan to indulge my inner geek when I write about issues of identity and autism. I can't write purely serious science and philosophy pieces all the time, now can I?

Dan Marino Autube Response

I recently did a recorded speech for the Dan Marino Foundation's Autube project. Overall, I'm pretty happy with the content of the speech, but... less so... about how it came out on the recording. I suppose that I still need work as a public speaker.

For what it's worth, the audio of my speech is available here. It was in response to Ari Ne'eman's question of what the largest issue is in autism education today. The full text of my speech was as follows:

Hi, I'm Alexander Cheezem, an adult on the autism spectrum and a member of
the self-advocacy community.

I must confess that when I heard that Ari would be introducing education as this month's topic, my first response was to inwardly groan and to think to myself, "Are there any controversies in autism that don't tie into education?" To be honest, I think that the answer to that is "no". Beyond simply the issues involved in educating autistic students, we must consider how we educate parents, professionals, and even the educators who will be teaching the students we're talking about educating... regardless of who those students might be. And then there's the issues of peer education, community education, and employer education, just to name a few, each of which comes with their own metaphorical can of worms.

Personally, I don't believe that these issues can really be separated. Each impacts and informs the others.

That said, it cannot be denied that some issues are more fundamental than others. For instance, many of the controversies in autism education today center around the issue of what the goal of educating autistic students is, and disagreements on that issue further complicate the subsequent debates. Until a consensus is reached on these issues, the clinical and special education communities will remain divided against themselves.

In turn, it is important to keep in mind the limitations of the methods we're talking about. While it's true that brain plasticity is a complex issue and educational methods can alter the brain in strange ways -- the cases of the hippocampi of London taxi drivers and the effect of prolonged blindfolding on the visual cortex being prime examples -- the underlying neurological differences that we refer to as "autism" are not fully understood and, in some cases, not even accepted as existing. The best evidence is, however, that no current educational intervention addresses them.

Or, put another way, it is not possible to make an autistic person quote-and-unquote normal through education. It may be possible to make an autistic person act like their neurologically typical peers, but it is my belief that insufficient scientific and ethical scrutiny has been given to the issues associated with this.

For instance, autistic people have a number of atypical strengths. A number of authors have explored these extensively in their work, much of which is published in peer-reviewed journals and largely ignored by the autism education establishment.

Additionally, many behaviors that seem "odd" to neurologically typical individuals serve or may serve important functions for persons of autistic neurology. Rocking, hand-flapping, and so-called "stereotyped" play styles come to mind, but there are others. Teachers also often want to quote-and-unquote teach behaviors which serve an adaptive function for typically-developing children but may be useless, stressful, painful, frightening, or otherwise maladaptive to an autistic child, such as pointing, eye contact, or quote-and-unquote appropriate gaze. It is my belief -- and the belief of many others -- that the ethics of these attempts need far more attention.

Moreover, value-laden and supposedly scientific judgements of what people "should" be have historically been prone to error. One of the more famous examples of this was the psychiatric diagnosis of drapetomania, popular in the mid-1800s, which pathologized the desire of slaves to free captivity. Other, more recent examples include left-handedness and homosexuality.

It's worth noting that all of these involved humiliating, painful, or otherwise harmful so-called "treatments". The suggested "cure" for drapetomania was whipping. "Treatment" for left-handedness often involved artifically disabling the left hand in order to force the victim to use his or her right hand in its place.

As for homosexuality, the less said about the so-called Feminine Boy Project, the better. Suffice it to say that at least one of its victims later attempted suicide... and that that is only one of many examples of the harm it caused that I could throw out. The Feminine Boy Project was, however, just one of many humiliating, harmful, and otherwise unethical attempts at treating the supposed mental disorder of homosexuality.

In short, even the idea of normalization runs across a number of ethical problems that have been largely ignored by the educational establishment.

Beyond those inherent in the idea of normalization for normalization's sake, however, there are larger ethical issues. For instance, is it approprate for our educational system -- as a subsidiary of our government -- to decide what is or isn't an acceptable aspect of our children's future identities? The ethical debates here are long and hard, but rarely applied to issues of autism.

Is it appropriate for any group to determine what is or isn't acceptable behavior or necessary knowledge for another group without that group's involvement?

My response to that one is to echo the central credo of the disability rights movement: "Nothing about us without us!"

And, of course, we then proceed to get into the tangle of issues that I mentioned at the beginning. Welcome to the wild and wonky world of autism -- where nothing is ever as simple as it seems. The tangles often give me headaches, and I deal with them every day of my life.