A View From the Boundaries

On Bad Parents

2011-11-01T18:28:00.000-04:00

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.

Still Yet More on Vaccination

2011-09-28T11:49:00.003-04:00

I just got vaccinated -- yet again! And, once again, the vaccine contained mercury!

Nope, still not feeling any more autistic. I'm noticing a pattern here...

On Diagnosis

2011-09-12T21:33:00.000-04:00

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Hopefully, I did not just "try".

On The Recent Lack of Posts

2011-07-13T13:28:00.002-04:00

Of late, I haven't been posting. I want to apologize for that.

Simply put, I managed to pretty thoroughly burn myself out. For a while, I was in no shape whatsoever to blog (especially on top of my other committments), and I'm afraid that I let myself get out of the habit of doing so.

As this message indicates, I'm trying to get back into blogging, and will hopefully follow this up with a number of relevant posts.

On "Pasta"

2011-01-17T13:58:00.003-05:00

My systems and theories class was rather... interesting. I had a number of difficulties with the class, not the least of which involved the professor. That said, one of the ongoing assignments was worthy of note.

For many of the "theories" we covered, we were expected to write a little summary, answering a series of ten questions. I've already posted one set of my answers to these here. At the end of the class, however, we were expected to answer these questions for ourselves. The professor called this "making pasta". I call the process of "making pasta" from assorted theories along the lines which he suggested "highly unethical", "academically dishonest", or "bullshitting" -- depending on what, exactly, you intend to do with this "pasta" after you "make" it.

That said, I did answer the questions anyway. I just didn't pick up elements willy-nilly from assorted "theories" based on their personal and ideological appeal.

It occurs to me that these answers may be of interest to assorted and sundry readers of this blog. So, without further ado...

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?

Theories and theoretical positions are valid within a clinical environment to the extent that they either are supported by the available empirical evidence ("are accurate") and/or have been demonstrated to improve client outcomes ("are useful"). Theories which possess accuracy but have yet to demonstrate utility can be justified on the grounds of improving understanding; theories which have demonstrated utility but lack accuracy can be justified on the grounds of the ethical principle of benevolence. Theories that have neither property have no business anywhere near clients in a clinical environment.

While some basic propositions about humanity are answerable by the currently available evidence (e.g. the available research on education, development, and cultural differences strongly supports the idea that people are capable of learning), others are not. By definition, answers to such questions are speculation or assumptions; representing them as other than this, if done for financial or academic gain, constitutes fraud.

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

Assumptions about human nature are dangerous for counselors and their clients. They should be avoided whenever possible. At the moment, the available empirical evidence does not even begin to answer this question. No clinical technique should be predicated on answers which do not exist.

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

The current state of knowledge about personality and individual differences are such that we can say things about it (e.g. that extroversion typically remains fairly constant over time; that people who report that they prefer showers over baths statistically tend to be more extroverted than those who do not) but cannot say much beyond that. Again, assumptions hurt clients and should be avoided where possible.

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

While developmental psychologists have done a fairly good job of mapping out the general bounds of the developmental path which a statistical majority of people follow from the context of Piagetian constructionism, assumptions such as the belief that deviation from this path must necessarily be harmful are, by their nature, both biased and bigoted.

Generally speaking, mental health isn't – in the sense that it is impossible to define "mental health" except as an absence of and lack of vulnerability to problems. This same problem is why medicine is defined as the science and practice of treating and preventing disease rather than as the promotion of good health.

Assumptions such as the regularly-made assumption that an individual must conform to some preconceived notion of "functioning" to be "healthy" have no place in clinical practice.

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

Problems with psychological components can arise from a variety of sources.
These can be environmental in nature (e.g. exogenic depression induced by parental mortality), biological in nature (e.g. forgetfulness induced by traumatic brain injury), social in nature (e.g. lack of assertiveness and ability to self-advocate induced by pervasive prejudice and paternalism), historical in nature (e.g. emotional scars left by traumatic experiences), or have a completely different nature which I couldn't think of when writing this. Assumptions in this regard have a distinct tendency to harm clients (i.e. assumptions on the cause of a specific problem can be and often are wrong, and treatment methods selected based on incorrect assumptions tend to be unnecessarily ineffective and/or harmful).

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

Counseling is defined (Merriam-Webster) as "professional guidance of the individual by utilizing psychological methods especially in collecting case history data, using various techniques of the personal interview, and testing interests and aptitudes".

Or, in other words, counseling someone means finding out what the problem is and helping them decide on a course of action to take about it. In common use, assisting or guiding the person in implementing the course decided on is also considered part of the counseling process.

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

Evaluation procedures, regardless of their theoretical origins, are acceptable to the extent that they have been shown to produce valid data. Therapies are acceptable to the extent that they have been shown to improve client outcomes. Tests and therapies which are not supported by the available empirical evidence should be considered inaccurate and/or harmful by default and have no business being practiced in practice outside of an IRB-approved research protocol.

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

The counselor's role is, by definition, to help the client arrive at a solution to the presenting problem.

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

The client's responsibility is to arrive at a solution to the presenting problem.

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

Theories are valid to the extent to which they explain existing data and predict future data. Good theories possess two properties which most of those we've studied have lacked: domain-specificity and falsifiability. A theory which possesses domain-specificity attempts to explain only a limited set of information; grand, over-arching theories of everything tend to be wrong more often than not. A theory which is falsifiable is testable and does not attempt to explain away data which does not fit its predictions. Good theories are typically constructed to fit the data they are attempting to explain rather than according to the author's ideological prejudices.

When evaluated by this standard, which is considered incredibly basic in the field of detecting pseudoscience and health fraud, the vast majority of the theories we've studied in this class come out extremely poorly. In the absence of good theories, the best option is generally to practice as atheoretically as possible.

There are some things which I'd change if I were writing this today. There are many more things which I wouldn't. In any case, there are many little nuggets of interest in here...

And Then There's These... People

2011-01-08T14:23:00.000-05:00

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

2011-01-07T14:43:00.002-05:00

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.

A Year In Review

2010-12-31T21:18:00.001-05:00

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Edit: Corrected a really embarrassing typo.

Demon-Haunted Inevitability

2010-12-27T14:38:00.000-05:00

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Worst Clinical Ethics Textbook Ever?

2010-11-18T13:56:00.002-05:00

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And, finally:

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

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

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

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

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

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

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

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

Edit: Corrected a couple of typos.

An Open Letter to Buzz Aldrin

2010-11-01T20:15:00.002-04:00

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

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

Dear Mr. Aldrin,

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

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

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

My disability is most commonly called "autism".

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

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

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

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

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

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

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

Sincerely,

Alexander Cheezem

The Bigotry Defense?

2010-10-16T22:12:00.000-04:00

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

2010-10-09T12:59:00.005-04:00

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."

Still More on Vaccination

2010-10-05T17:07:00.004-04:00

I just got vaccinated yet again -- this time the vaccine even contained mercury!

I'm now heavily perseverating. Oh, wait. That's normal. Nope, still not feeling any more autistic.

Another Comment on Vaccination

2010-10-01T21:34:00.003-04:00

I got vaccinated today -- against three different illnesses. I still don't feel any more autistic.

My arm is a bit sore, though.

On Mental Disorders, Part One

2010-09-21T00:03:00.004-04:00

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

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

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

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

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

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

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

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

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

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

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

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

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

Edit: Corrected an embarassing typo.

On Stereotypes

2010-09-19T18:07:00.000-04:00

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.

On Donald T

2010-09-16T14:29:00.002-04:00

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 Paternalism, Murder, and Genocide

2010-08-28T20:02:00.001-04:00

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

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

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

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

I Always Want to Be Right (And You Should, Too)

2010-08-27T23:40:00.001-04:00

I always want to be right. When I say this, I don't mean that I want to win arguments. That's not being right -- that's having other people tell you you're right. I mean that I want my beliefs to reflect reality. I want all of my beliefs to reflect reality -- if not perfectly, then at least as fully and completely as possible.

I do not want to believe I can fly when I can't. The practical consequences of this are perhaps best described by the term "splat".

I do not want to believe that a cure for cancer works when it doesn't. The practical consequences of this are paid in wasted money and unnecessary side effects. By the same token, however, I don't want to believe that a cure doesn't work when it does. The practical consequences of this are commonly referred to as "dying in horrific agony". Selecting an effective (and helpful) treatment or cure is one of the hardest -- and most important -- parts of medicine.

I do not want reality to conform to my existing beliefs. That idea -- the foolish wishing for what I tend to derisively call "magic god powers" -- may make for a nice fantasy on occasion, but is usually a waste of time. I want my beliefs to conform to reality. I want to believe what is true, not for reality to follow from what I believe.

I do not want others to sit back and say nothing when I express an inaccurate belief. If they do so, I lose the opportunity to correct my beliefs. I fully understand that the price of being right is admitting that you have been wrong. I accept and eagerly pay this price. Metaphorical humble pie may taste awful, but it's very good for you.

I do not want others to hold back in debate. I want to hear the best, most valid arguments that the people I'm debating can put forth -- and I want them to support these arguments as well as they can. I, in turn, will do the same. I will hold my position with the best arguments I can come up with (as the circumstances allow) in hopes of drawing out the best, most thorough counterarguments possible. If I did otherwise, I would deprive myself of evidence and reasoning that could help me develop a better, more informed view of the issue we're debating. If I "win", so be it. If I "lose", so be it. Either way, I'll be using the reasoning and evidence to reevaluate my position... and will very often change it.

Of course, this changing isn't always obvious. I usually reevaluate my position after the debate... and I often play "devil's advocate", offering forth arguments that I don't really believe (but can't easily counter) in order to draw out a precious -- and useful -- counterargument.

I don't want to reach premature final judgment... and my beliefs tend to be more probability estimates regarding the possibility of something being true than actual beliefs that something is true. Truly wanting to be right means being comfortable with the limitations of one's knowledge.

And, in the end, as I reflect on my attitudes and my desire to be right... I can't help but think that the world would be a better place if more people desired to be right, too.

"Words to the Wise"

2010-08-05T13:21:00.007-04:00

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

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

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

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

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

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

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

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

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

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

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

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

Three principal rules of conduct:

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

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

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

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

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

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

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

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

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

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

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

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

Edit: Added a link.

On "Inclusive Resource Lists"

2010-07-27T23:54:00.002-04:00

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

In other words, you want to create the resource-list version of Wheeler's (2003) thought experiment.
To quote:
Suppose a medical centre were to propose creating a programme in 'unproven and dubious medicine'. In this programme, physicians would learn how to give patients not only conventional treatments, but also treatments not known to be safe and effective. Some of these would have plausible mechanisms of action, but others would make no sense. The treatments would include experimental drugs of unknown purity. There would be research concerning the methods, but in the meantime the methods would be used before the results were known. Patients would have the benefits of both worlds – treatments that work and treatments that probably don't work.

A programme with such a title would find little acceptance. But change the name to 'integrative medicine', downplay the lack of evidence, claim that it deals with healing the person and employs new paradigms, and for some reason there is much greater acceptance. (p. 8)
You want to list people who make their living chemically castrating autistic children in the middle of people who've dedicated their lives to helping treat actual disease; you want to list people who make their living torturing kids next to people who've spent their lives trying to protect children. You want to list fear-mongering hate propaganda next to legitimate resources on parent education.

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

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

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

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

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

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

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

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

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

On My Recent Conference Presentation

2010-07-25T00:08:00.001-04:00

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

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

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

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

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

How does it harm autistics?

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

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

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

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

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

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

On Disease

2010-06-17T00:30:00.001-04:00

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

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

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

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

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

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

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

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

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

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

For My Upcoming Conference Presentation

2010-06-13T00:52:00.001-04:00

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

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

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

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

Medicine is commonly defined as the science or practice of the treatment of disease. While this seems fairly straightforward, it actually isn't – the concept of disease is complex, multifaceted, and often controversial. MedLine Plus provides the following definition:
Disease – An impairment of the normal state of the living animal or plant body or one of its parts that interrupts or modifies the performance of the vital functions, is typically manifested by distinguishing signs and symptoms, and is a response to environmental factors (as malnutrition, industrial hazards, or climate), to specific infective agents (as worms, bacteria, or viruses), to inherent defects of the organism (as genetic anomalies), or to combinations of these factors.

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

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

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

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

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

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

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

Yet Another Example of Over-the-Top Woo

2010-06-12T14:02:00.004-04:00

I just discovered that some people are selling levodopa as a dietary supplement.

Yes, levodopa -- arguably the world's most infamous anti-antipsychotic. Yes indeed, legal home psychopharmacology has reached a new low. Just when I think the quacks can't get any more outrageous...

For those of you who don't understand my reaction, levodopa, also known as L-dopa, is a particularly infamous anti-Parkinson's drug and the basis of Dr. Oliver Sacks's well-known book, "Awakenings". It is an extremely potent drug with a host of known side effects which include (but are not limited to):

Nausea
Gastrointestinal bleeding
Disorientation and confusion
Auditory and visual hallucinations
Drowsiness and narcolepsy
A condition which strongly resembles stimulant psychosis
Hair loss
Emotional effects (it tends to make emotions more "extreme" or "vivid", which wouldn't be such a bad thing if anxiety and libido weren't the aspects most notably/commonly amplified).
Cardiac arrhythmia

And then there are the effects of chronic use. This is not a safe drug.

And yet people are selling it as a dietary supplement, completely absent any sort of real regulation. Thank you very much, DHSEA.

On Freudian Psychoanalysis

2010-06-01T23:25:00.000-04:00

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.

A Recent Assignment

2010-05-07T23:58:00.002-04:00

My abnormal psychology class has assigned "critical thinking exercises". In practical terms, this means weekly essays on some topic or another. The first one, which I just turned in, was a response to the question: "What do you feel are the most salient and valid criteria of abnormality? Why?"

While posting this essay, I found several typographical errors that I somehow managed to miss while proofreading it for submission. I've corrected them and added some HTML links to provide explanation and further reference. This said, my essay is as follows:

This is a pretty difficult question for me to answer, mostly because I believe the question itself is both flawed and loaded. To begin with, our textbook grossly misuses the term "abnormal", equating abnormality with dysfunction and defining the term "abnormal behavior" as synonymous with the concept of a psychological disorder (cf. p. 2). In actuality, however, the term "abnormal" simply means "not normal" and is synonymous with the term "atypical". As such, any behavior which differs from the norm is abnormal… and atypicality is the only criterion with any relevance.

While it is possible to argue that our book uses "abnormal" and its derivatives in a special sense, the use of this term in such a fashion is a gross violation of both medial bioethics and clinical ethics in general. Specifically, it violates both the principles of benevolence and non-maleficence through its effects both on informed persons who accept this equation (i.e. students learning from the book) and the effects of regarding this sort of linguistic equivocation as acceptable on society as a whole.

I certainly do not believe in linguistic determinism, but it is very difficult to deny the existence of a relationship between language and thought. How we think affects the sort of language we use, and there is a good bit of evidence that the sort of language we use effects the way we think (e.g. Tan et al., 2008). The existence of several named logical fallacies related to this (e.g. equivocation, amphiboly, fallacy by semantic shift) tends to support this general idea. Given the state of the knowledge in this arena and the precautionary principle, there is an ethical obligation to avoid this sort of issue.

Moreover, there is the matter of laypersons who hear discussions using this sort of misused terminology. It is unlikely that such persons will be aware of the issues surrounding the constructions used, and we live in an era in which the technical literature is becoming increasingly available to such people (as evidenced by publications such as PLoS and the policies of PubMed Central).

Even if the issue of the false equivalency created by this abuse of the English language is ignored, the criteria laid out in the book are problematic on other grounds. Simply put, they have been used to justify outright bigotry and abusive "treatments" which were only "justified" by this bigotry (e.g. Cartwright, 1851; Lovaas, 1987; O'Malley, 1914; Rekers & Lovaas, 1974; Chapter 14 of our book). The use of our book's criteria as sole and sufficient demarcation for what is and isn't a mental disorder is flawed, highly unethical, and not what is actually done in practice.

Furthermore, the entire construct of "mental illness" is of dubious validity and has been extensively challenged (e.g. Szasz, 2008). Even if we can't demonstrate that mental illness objectively exists, however, there remains one potential justification for the use of the concept: utility.

Simply put, we can justify describing something as a mental illness if we can demonstrate that the concept – and the medical-model approach which goes along with it – is useful. Doing so in a clinical environment, however, would require a demonstration of improved patient outcome, and it is very difficult to conduct a rigorous randomized controlled trial of the use of a concept.

Despite this, it is possible to evaluate the consequences of medicalization via the epidemiological evidence and comparing the prognosis of various syndromes in countries that have widespread access to medical treatment for mental illness and those that do not. It is also possible to do this by comparing outcomes across time-periods in a similar fashion.

Scizophrenia is the most "extreme" of the DSM mental disorders, and it is a major mainstay of psychiatry. As such, it makes intuitive sense to begin by evaluating the utility of the concept of a psychological disorder in reference to schizophrenia. Moreover, there exists a single randomized, controlled trial of psychiatry as a whole in the treatment of schizophrenia: the Soteria Project.

None of these approaches yield evidence in favor of the utility of a medical model approach to schizophrenia: World Health Organization data indicates that schizophrenia has better prognosis in developing countries than in developed countries; the best outcomes to be found for the treatment of schizophrenia here in America can be found in those non-medically treated by Quakers in the 19^th century; and the findings of the Soteria Project were very much damning in regards to the effects of psychiatric intervention (see Whitaker, 2002 for review).

Or, in other words, the concept has yet to demonstrate utility in regards to treatment. If and when it does, I'll start to consider medical-model approaches ethically justified.

References

Cartwright, S. (1851). Report on the diseases and physical peculiarities of the negro race. New Orleans Medical and Surgical Journal, 7, 691-715.

Lovaas, O. (1987). Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 55, 3-9.

O'Malley, M. (1914). Psychoses in the colored race. American Journal of Insanity, 71, 309-337.

Rekers, G. & Lovaas, O. (1974). Behavioral treatment of deviant sex-role behaviors in a male child. Journal of Applied Behavior Analysis, 7, 173-190.

Szasz, T. (2008). Psychiatry: The Science of Lies. Syracuse, NY: Syracuse University Press.

Tan, L., Chan, A., Kay, P., Khong, P., Yip, L., & Luke, K. (2008). Language affects patterns of brain activation associated with perceptual decision. Proceedings of the National Academy of Sciences, 105, 4004-4009.

Whitaker, R. (2002). Mad in America: Bad Science, Bad Medicine, and the Enduring Mistreatment of the Mentally Ill. Cambridge, MA: Perseus Publishing.

Edit: Corrected one more typo...

A Few Changes

2010-05-07T01:14:00.002-04:00

Classes have started up again, and I am now once again a grad student. My blog's byline has been altered back to its original to reflect this. Expect a bit more free-ranging commentary from me, as I once again use my various coursework as inspiration for blog posts.

Also, due to some recent events in the online autistic community, I'm preemptively adding a policy against personal attacks in the comments here.

Autism's False Prophets

2010-05-04T00:46:00.000-04:00

As most of my readers are probably aware, Paul Offit's famous (or infamous, depending on who you ask) book, Autism's False Prophets, came out in paperback last month. As most of my readers are probably unaware, this finally gave me the opportunity to buy a copy and read it in its entirety.

This was actually my first time doing so. I hadn't done so until now for reasons that had nothing to do with a lack of desire -- I simply haven't had the time or money to do so until now (and getting a copy of the hardback edition would stretch my budget a bit too much).

That said, it was well worth reading. Even though I already knew most of the story it told, having read many of the original sources that Offit cited, I still managed to learn some new things (e.g. the true story behind Dr. Geier's claim that testosterone binds to mercury). By and large, the information contained within the book is good, and the writing is highly accurate.

That said, I did find one factual error in the book. Specifically, on page three (of the paperback edition; it may be different in the hardcover), Offit refers to Bettelheim as "the first to offer a cure for autism". This is not only false, but pretty blatantly so... and even if the statement was true, it is something which would lie beyond Offit's ability to establish. It is true that Bettelheim was a the first highly visible, highly influential person to do so who is remembered (with much venom) today, but that's about it.

First off, America has a very long history of medical con-artistry and quackery. Establishing that Bettelheim was the first would require establishing that no snake-oil salesman had ever approached the parents of an autistic child and offered a faux cure prior to Bettelheim's publication of his book.

Secondly, Bettelheim initially published The Empty Fortress in 1967. This is significant -- falsifying the claim that Bettelheim was the first to offer a cure for autism would simply require demonstrating that someone else had tried an allegedly curative treatment on an autistic child prior to this.

Of course, autism was conceived of as a form of schizophrenia at the time; the realization that this belief is drastically wrong is only a relatively recent development... and the belief that they're the same thing (or related) is still periodically revived in a wide variety of forms. Moreover, a large number of treatments have been hailed as curative for schizophrenia, and many of these were tried on autistic children. In fact, you don't even have to look past Kanner's original sample to see this phenomenon.

Eisenberg's 1956 followup of the children treated at Johns Hopkins (a superset of Kanner's sample) reveals a similar pattern. Eisenberg refers to a "full range of psychiatric treatment" having been used, including electroconvulsive therapy (ECT). Even a cursory review of the literature available at the time shows that ECT was hailed as curative for schizophrenia by many of its practitioners and supporters. Personally, I suggest reading the relevant chapters of Whitaker's Mad in America for review.

That's even without getting into the matter of the orgone box which was used on one child.

As the error is understandable and this is only one clause in an otherwise accurate book, the matter can be viewed as an extremely minor issue. The larger problem lies not within how the book is inaccurate, but rather in how the book is incomplete.

First off, the discussion of ways in which the anti-vaccine/quack movement impacts and has impacted research is missing a major factor. While the book wonderfully describes the personal attacks on researchers and the wasted research efforts which have characterized the movement, it misses more indirect and pervasive harms. For one example: what has the effect been on recruitment for treatment research? I once had the distinct pleasure of speaking to a research psychiatrist about why sample sizes in trials of psychiatric treatments of autistic children are so low. His answer was that -- among other factors -- that it was extremely difficult to get families to participate... and he blamed the quack industry for this. After all, researchers need to get informed consent -- which means, among other things, a realistic picture of the potential impact of the drug being studied -- and there's a 50% chance of being assigned to the placebo arm of a RCT. By contrast, there's a 100% chance of receiving a quack's latest "miracle cure". Assuming you trust both sources of information, which would you choose?

Never mind the question of which is actually the better choice -- decision-making is based on perception, not reality.

Secondly, and more conspicuously, the book utterly ignores both the autistic rights movement and the fledgling autistic community... and the anti-vaccination movement's impact on them. This means that a very large portion of the issue -- such as autistic people's perceptions of the entire affair -- is utterly ignored. The anti-autistic stigma created by the movement is brushed off at best. The damage inherently caused by a view of autistic people as mercury poisoned is only briefly covered... by quotes from Kathleen Sidel and Camille Clark, who are parents.

Thus, the very real hardships, dismissals, and stigma faced by autistics on a regular basis because of these people is largely dismissed throughout the book, only to be specifically covered in one chapter... and even then it is only from the perspective of parents. The work and views of Jim Sinclair, of Amanda Baggs, of Ari Ne'eman, of Michelle Dawson, among others... are ignored. This is -- simply put -- not acceptable. Not only does this serve to marginalize us and exclude us from consideration in a discussion about us, but it also detracts considerably from the book's message.

By failing to take into account a large part of the story, Dr. Offit also manages to exclude a large portion of the harm and damage caused by the anti-vaccine movement. I really don't understand why he'd do this in a book about the anti-vaccine movement and the harms it's caused.

To be fair, Camille is autistic. She, however, is one person... and is invoked largely as a parent. The story of the community is discarded.

In short, Autism's False Prophets is a very good book... with one glaring flaw. It could be so much better if it wasn't for that one thing... and I cannot help but mourn the book it could have been even as I enjoy the book it is.

On Yet Another Stupidly Harmful Therapy

2010-04-14T17:40:00.001-04:00

"Helminthic therapy" is the treatment of autoimmune disorders via deliberate exposure to parasitic worms. I know this for two reasons: One, I live within easy driving distance of what is apparently the quack capitol of the United States. Two, the parents of the kids I work with often have no common sense whatsoever.

If you've reached the obvious conclusion, you are entirely correct. I now know more than I ever wanted to about this, including the name of a company that will ship whipworm eggs from Thailand.

Ugh.

There really isn't much on the 'net about helminthic therapy and autism as of yet, but what I have found is suitably disturbing. The rationale is discussed here and here. The first part of a three-part video lecture is available here (with parts two and three available here and here, respectively). A very disgusting blog post can be found here.

Any other sources would be greatly appreciated.

On a Recent Huffington Post Article

2010-04-07T22:00:00.001-04:00

Around a week ago, this article was posted to the Huffington post.

Quite frankly, my initial reaction to it was to think that it was an April Fool's joke. The sheer absurdity of the juxtaposition involved in talking about healing divides while spewing hate speech is striking.

Yes, hate speech. It's pretty unambiguous. Reading through the comments, however, it quickly becomes apparent that people don't get it.

Well, some commentators do. Thanks, Kim! (And, of course, all of the other people who I don't know...)

At the moment, the commentators seem to be divided between those who engage in reification error and those who don't. This is... pretty typical, really.

In any case... let's see. The post characterizes the neurodiversity movement as being made up of "people with Asperger's Syndrome or higher functioning autism" (this is nowhere near true, and "high functioning" is considered insulting), describes ASAN as "a self advocacy movement for people with high functioning autism" (ditto), and ends by stating that "We aren't the enemies. Autism is." (Which qualifies as blatant hate speech).

I really don't know what to say here...

A Bit More on Translational Research

2010-03-21T17:03:00.000-04:00

Translational research is a phenomenally complex topic, but generally refers to the basic idea of taking discoveries made in basic research and researching how they apply "in the real world". It's worth noting that this (usually) does not mean applied research, although the basic concepts are pretty similar in a lot of ways. The main difference is that transitional research paradigms reject the dichotomy between basic and applied research when doing so. "Basic" research within a translational research paradigm both informs and is informed by "applied" research, blurring the lines between the two.

Any more complex explanation of research paradigms in this context, however, would require an explanation of the field of medical informatics. Frankly, I don't want to go there.

I will admit that I have some reservations and concerns regarding the entire translational research paradigm. I will also admit that there is a good chance that this is because of the limitations to my understanding of it. It is quite possible -- even probable -- that my concerns and reservations have been addressed.

Of course, it also doesn't help that there isn't a standardized definition of "translational research", and some definitions conflict -- often in major ways -- with the above (e.g. this one).

Most people, however, don't need to really understand research paradigms. What they need to understand -- even if only in general terms -- are the challenges that those paradigms were designed to address.

Simply put -- as impressive as modern medical science is, we really don't understand that much about how the human body works. This is why most "promising new treatments" turn out to be worthless -- or, all too often, worse than worthless. It's the aspects of biology that we don't understand that keep tripping us up, time after time after time.

This is why any new treatment has to be tested -- thoroughly. This is why rushing the process is a very bad idea. It's also why many of the medications we use have nasty side effects.

Simply put: as much as we'd like to believe otherwise, modern doctors, pharmacists, and so on don't really know what they're doing.

Ten Research Methods Articles Every Parent Of an Autistic Child Should Understand

2010-03-20T21:41:00.003-04:00

Perhaps understandably, many parents of autistic children keep an eye on (or attempt to keep an eye on) the latest research and treatments. Parents' lists are regularly flooded with discussion of various treatment methods, medical research studies, psychological studies, and just about anything else one could imagine... most of it related to research.

At the same time, the average parent knows around as much about how research is conducted and about what study findings really mean as does the average sixth-grader. This combination is very much not a good thing.

Simply put, many of the conclusions parents reach when reading the literature are not anywhere near accurate. Even many of the most basic aspects of research are commonly misunderstood in truly dramatic fashions.

The ideal solution, of course, would be to sit every parent of an autistic child down and give them a series of college-level (undergraduate or postgraduate) classes on the scientific process. Unfortunately, this is pretty spectacularly unrealistic. Frankly, many parents could use classes on critical thinking skills, too, but that's every bit as unrealistic.

As such, I've compiled a "Top Ten" list of papers which cover things that most parents don't get. Of course, like any such list, there are a number of biases operating in how I've constructed this. Perhaps a reader will be able to spot some of these... and, as an exercise for my readers, I've tried to make a few of them as blatantly obvious as possible. Narrowing this down to ten papers was emphatically not easy, and there are a number of papers which almost (but did not quite) make the cut for a variety of reasons. I may blog on a few of them later.

To finish: for the purposes of this list, I've defined "research methods articles" as any peer-reviewed writing dealing primarily with the design, conducting, and interpretation of research.

Edit: Also note that there's usually more than one good article on any of these topics, and I excluded "duplicate" articles. I often had to drop very good articles which deserved to be on this list because of that.

10. Strech & Tilburt (2008). Value judgements in the analysis and synthesis of evidence.

One of the (many) reasons why conflicts of interest are so important when dealing with research is the fact that there is a lot of wiggle-room in experimental design. Scientists routinely make value judgments in designing and interpreting research, and this paper serves to highlight many of the ways in which this impacts the process of research.

Just as a quick illustration: how do my value judgments impact the content of this top 10 list?

9. Rutter (2008). Epidemiological methods to tackle causal questions.

In this paper, Matthew Rutter (who I admittedly have issues with relating to other works) discusses the issue of attempting to determine the cause of something without being able to manipulate it in a lab (or clinical trial, etc.). Of course, in the modern autism world, it's more important to understand how it's possible to establish the reverse -- that something is not the cause of something else -- without an experiment... and that is, admittedly, often far simpler.

8. Lesaffre (2008). Use and misuse of the p-value.

Statistical significance testing is one of the most ubiquitous aspects of the modern scientific process. Unfortunately, it's also the source of many of the problems with it. As scientists haven't been able to find (or settle on) a better alternative, however, it still pops up just about everywhere.

One statistic -- the p-value -- is central to this process. Unfortunately, many people (including scientists) misunderstand just what the p-value is, what it means, and what it represents. Lesaffre's paper discusses this and the issues surrounding it.

7. The PRISMA statement.

One of a number of "reporting standards" documents which standardize scientific reporting in the medical literature, the PRISMA statement deals with systematic reviews and meta-analyses, and specifically with which items of the review's process and methodology most need to be reported.

The other documents of this type (e.g. the CONSORT and STROBE statements) are also very important, but the PRISMA statement deals with ways to document the possibility of biases that effect the process of drawing a conclusion from the entire body of available literature. By contrast, the others deal with the conclusion of single studies.

Of course, since what's important is understanding, most interested parents should read the explanation and elaboration document, not the PRISMA statement itself.

Were I doing a longer list, the CONSORT statement, at least, would be in here. As is, however, I believe that the biases covered by the PRISMA statement to be more important for parents of autistic children to understand... and, frankly, I felt that one major standards document was enough for this list.

6. Manchikanti (2008). Evidence-based medicine, systematic reviews, and guidelines in interventional pain management, part I: Introduction and general considerations.

The concept of evidence-based medicine has revolutionized clinical practice over the past few decades. This article discusses the concept of evidence-based medicine, its history, its tools, and countless other related topics, providing a great introduction to the medical literature... and provides a basic foundation for understanding it.

Best of all, it's available for free.

5. Ioannidis (2008). Perfect study, poor evidence: Interpretation of biases preceding study design.

Even if a study is designed, conducted, analyzed, and reported perfectly, it can still be biased or otherwise flawed in a large number of ways. This paper reviews and discusses this phenomenon, including (but not even close to limited to) such factors as poor scientific relevance, straw man effects, and the importance of the analysis of the geometry of a research field.

4. Ioannidis (2008). Why most discovered true associations are inflated.

When something is first discovered, researchers' estimates of its importance are generally exaggerated. This article discusses this phenomenon and the reasons for it, painting an unusually frank and readable picture of just why this happens.

3. Ioannidis (2005). Why most published research findings are false.

One of the more annoying aspects of science is the fact that we know that most of our discoveries are simply wrong. The problem, however, is that we don't usually know which ones until far later. This is one of many reasons why replication is so important in the sciences and why the habit of interpreting individual studies, taken in isolation, as "definitive" is really, really problematic. "False positive" findings abound in science -- especially the social and medical sciences -- and often lead armchair scientists or doctors astray.

This paper, one of the most influential papers published in the last decade, discusses this phenomenon and the reasons for it. If you have time to read the responses and the discussion that followed the publication of this article, that is also very much worth the effort of doing. I particularly recommend Mooneshinghe, Khoury, & Jannssens's (2007) essay, Most published research findings are false—But a little replication goes a long way.

The full text is available for free. I really love open-access scientific literature. Long live PLoS!

2. Altman (2002). Poor-quality medical research: What can journals do?

Poor-quality research is a problem in any field. Simply put, it's possible for a poorly-designed study to find anything, no matter how absurd. If I really wanted, I could easily design a study that, while looking legitimate to uninformed non-experts, would conclude that the Rocky mountains are flatter than a random pancake from IHOP. There is even precedent for this.

This is why expertise in experimental design and research methods is so important... both for designing and interpreting studies. Critical appraisal of any research is key, and you can never just trust the author's interpretation of his own work. It's also a large part of why a number of processes (e.g. peer review) are in place and why doctors get so up in arms about irresponsible media reporting.

And this article is available for free from JAMA. Have I yet mentioned that I love open-access literature?

1. Simon (2008). Lost in translation: problems and pitfalls in translating laboratory observations to clinical utility.

Where to begin? This one article manages to cover about half of what's wrong with modern clinical autism research and with autism research funding priorities. Forget the political issues involved and the tie-ins between genetic research and prenatal testing. Forget the issue of whether a medical model is appropriate for autism or not. Forget even the normocentric bias which pervades most autism research and the question of whether or not it is appropriate to view autism as a disease.

Today, most funding into basic research into autism goes into attempts to understand the underlying biological processes that differentiate autistic and non-autistic individuals. This is a tremendously complicated task, one which has countless problems which I could rant about for hours. The sheer amount of money which this task has already gone into this task (and which it will likely require in the future) is mindboggling... not to mention researcher time and effort, etc.

This doesn't mean that I think that the task is worthless. Basic understanding of biological factors and processes is rarely worthless. There are, however, a phenomenal number of difficulties in taking these (usually incomplete) understandings and doing anything useful with them. At the same time, other approaches (what Simon refers to as focusing on "predictive laws rather than on trying to understand the [biological] why of those laws", p. 2 of the author's manuscript, parenthetical word added) offer far better cost-effectiveness... and neatly avoid a lot of the convolutions in the process which Simon spends the rest of the paper explaining.

Edit (3/21/10): An excellent discussion of some of the factors I'm trying to talk about can be found here. A dissenting -- but still valid -- opinion regarding that specific application can be found here. Many thanks to Tyler Cowen and Michelle Dawson for highlighting these and pointing me in their directions. Additionally, to avoid a misreading of the above: focusing on predictive laws does not avoid the need for translational research; it simply makes the process thereof less convoluted. One example of this would be in finding and using valid and robust surrogate endpoints within studies... but this is a much, much longer discussion.

This paper (the author's manuscript of which is available for free here) is an excellent discussion these problems... albeit in a different context. This context actually represents the paper's largest flaw, one which annoys the heck out of me: Simon is a cancer researcher and the paper was published in a cancer research journal. If, however, we are to understand the issues involved with taking the medical research models applied to cancer and applying them to autism (as Autism Speaks and others repeatedly insist on doing), we must first understand the issues with those models in general -- and they very much have them, even when they're used appropriately. This paper does an excellent job of highlighting those.

Edit: Corrected a spelling error.

On Humor

2010-03-18T15:56:00.004-04:00

Taken yesterday from my Facebook profile:

Alexander Cheezem just spent a while chasing after his pet sixteen-year-old, three-legged dog after she ran out of the house. I'm also still on crutches and can't put weight on my left leg. I'm fairly certain that some sort of disability humor can be derived from this, but I'm too exhausted to do so myself.

I believe this speaks for itself.

On the Autism Health and Wellness Expo, Part Two

2010-03-17T21:53:00.000-04:00

It is difficult to convey exactly how charismatic, convincing, and generally smooth the Geiers are. I've been trying to put the matter to words, and failing repeatedly. I have deleted the text of this message several times and started over just as many.

I suppose one anecdote from meeting them -- while minor -- will help. I knew several of the parents there. One of them was a highly qualified clinician who I've had a degree of experience with. She has always been among the more reasonable of the professionals in the area (in certain respects, anyway -- I've never worked with her clinically) and is a highly intelligent speech-language pathologist with a nineteen-year-old autistic son.

Said son apparently showed an interest in pornography for the first time rather recently. After attending the Geiers' presentation, she is now looking into getting him chemically castrated.

On the Autism Health and Wellness Expo, Part One

2010-03-14T22:10:00.002-04:00

Perhaps it is unsurprising that the quacks came out in force for an event entitled the "Autism Health and Wellness Expo". On the other hand, it says something that Mark and David Geier were not the biggest quacks there.

And yes, they were there. I listened to one of their talks and wound up meeting the father in their father/son castration team. It was an... interesting experience.

The Geiers' talk involved some truly spectacular fearmongering. Among other things, they claimed that they believe that autism's prevalence was at one in 20 to 30 during the "peak years" (whatever that means). They claimed that most autistics have mitochondrial dysfunction of some kind or another. They engaged in some truly insipid anti-vaccine fearmongering.

They also defined aggression as including meltdowns and frustration.

To Dr. Geier's credit, however, he did (in a subsequent discussion) criticize DAN! -- basically for being frauds, although he also called them pawns of Big Pharma. He acknowledged that hyperbaric oxygen "therapy" for autism is bunk (at least how they practice it). He gave me some rather interesting information regarding vitamin manufacturers. He stopped just short of actively calling Bradstreet a quack (and did strongly imply this). He repeatedly emphasized the need for using a reputable lab to conduct legitimate tests (of course, if you don't interpret them correctly...).

The Geiers' science was every bit as bad as I'd been expecting. There are major parts of their presentation that I really wish I could still remember -- such as the details of how they concluded that autism is really mercury poisoning (it was shoddy logic based on urinary porphyrin testing, but I don't remember several key details).

They were also pretty blatantly recruiting for CoMeD, even going so far as to hand out pamphlets. The less said about this, the better.

Until today, I wondered how a parent could ever fall for their quackery. I no longer wonder. The Geiers are a truly polished act, con artists extraordinaire. Some of the tactics they used... the liberal use of the foot-in-the-door phenomenon... the polished presentation of their pseudoscience (it was often extremely difficult to detect this without extensive knowledge of the topics -- and studies -- they were talking about)... the polished use of "reasonable" stances towards various groups (no one was perfect in his eyes, everyone had flaws and strengths)...

It scares me. It really does. I'll have to write more later, but keep in mind that they weren't the quackiest people to speak at that expo. The honor of "biggest quack" goes to Dr. Phil Bate. More on him later.

A Recent Blog Post

2010-03-07T09:26:00.002-05:00

It's somewhat ironic, given my recent decision to post my discussion topic for the Autube.tv project, that the subject of that discussion would promptly come up in one of the autistic blogosphere's better blogs. This, however, is precisely what happened.

Amanda's post on the topic is (among other things) a highly eloquent and effective explanation of one aspect of what I felt -- and still feel -- needs much more exploration by everyone involved in the field of autism. I highly recommend reading it in its entirety.

A Discussion Topic

2010-03-03T21:18:00.003-05:00

Around a year ago, I recorded a discussion topic for the Dan Marino Foundation's Autube.tv project. They have yet to use it, much to my disappointment... as I view it as a very important question that doesn't get asked enough.

Fortunately, I'd written out my question... and I still have the transcript. As such, I'm able to post it here.

Hi, I'm Alex Cheezem, a graduate student at Nova Southeastern University and an adult on the autism spectrum. One issue that surrounds any discussion of autism is the matter of language. Words often have different meanings depending on context -- for instance, the technical language of behavior analysis defines an aversive as anything that an organism moves to avoid, while the term often brings up images of ammonia squirts to the face, electrical shock, and other such painful and humiliating "treatments".

At the same time, the spoken languages of our cultures are often a second language of sorts to us. Countless accounts are available of our thought processes and the ways in which we think, but these ways are often alien to those people who think in a more typical manner. The underlying assumptions of these modes of thought are often different from those of what we call the English language.

Finally, much human communication is in the form of subtle implcations and connotations. While people on the spectrum often have difficulty perceiving these, people not on the spectrum often have trouble with correctly interpreting our statements in their absence. Many people on the spectrum have invested a considerable amount of effort into learning this language only to come across in a manner completely unlike what we'd intended.

Do these problems obstruct meaningful discussion of autism-related issues? If so, how can we go about opening a meaningful dialogue? Is there any way that we can keep important points from being "lost in translation"? Let's hear from some voices in our community that can help us frame this conversation.

While not everything in this remains true (specifically, I'm no longer a student at Nova), the question is no less important now then it was a year ago.

On Psychiatry

2010-02-25T16:14:00.001-05:00

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:

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.
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.

In Response to Ven Sequenzia

2010-02-25T00:45:00.002-05:00

I recently came across this petition, which states that the Brittish GMC's "persecution" of Dr. Andrew Wakefield is "akin to the persecution of Semmelweis." I also noted that signer #1,144, who left a rather long and rambling comment, was a Mr. Ven Sequenzia (assuming, of course, that he is not an impersonator).

I wouldn't normally respond to such, considering, but I happen to know Mr. Sequenzia, both by reputation and in person. He is, after all, the president of Florida's branch of the Autism Society of America.

Of course, the very fact that Mr. Sequenzia signed a petition of this sort is a problem. His comment was more of one. As such, I'm going to branch out somewhat and write a reply of the sort used by some of my fellow bloggers.

I met Dr. Wakefield several years ago and also listened to him testify to Congress, read some of his research and felt that there was something there that could affect or impact some children on the autism spectrum. While I understand there is a feeling from the medical community that anyone who questions the medical establishment is a nut case or is trying to insight panic, I get the sinking feeling that the medical establishment is doing the same thing here.

Umm... no. First off, there's a long tradition -- within the medical establishment -- of questioning established belief. It's called "science".

Questioning established beliefs -- and testing them to see if the evidence supports them or not -- is the bread and butter of science. Questioning the way you go about this and trying to find better processes for testing your beliefs is also a very large part of the scientific process.

Of course, like everything else, science has rules. A very large part of the matter is the fact that Wakefield didn't follow them.

I respect that there is a question of research and how it is accomplished. I also respect that there are several medical professionals that believe they are right. That doesn't mean they actually are right. The biggest problem with autism, the medical community and families dealing with it, is the need for everyone to be right. The problem is, there is no right or wrong. There is only what you and your child or adult with autism has to live with every day, what you can do to address how it affects your family and how to treat the issues that arise.

Umm... no. To throw out a few examples: if you chemically castrate a child in the name of pseudoscience, that is wrong. If you falsify data and violate the Nuremberg Code in the name of personal financial gain, killing countless children in the process, that is wrong.

This, of course, is in the moral and ethical sense. The factual sense is a great deal more straight-forward... and every bit as complicated in its own way.

Sure, there are treatments that help some. There are also treatments that harm some. I am all for making sure that families don’t get harmed and don’t subject their child with unnecessary treatments.

Yes, and how do you know what really helps and harms? That's the real question -- and people are horrendously bad at answering it. Science, as a whole, is built around methods to compensate for the various things which mislead and deceive us. Ignoring the "rules" of science (which do allow you to "break" a number of the "rules" -- provided you can justify doing so -- and remain within the bounds of good scientific practice) means letting these various biases creep back in.

In medicine, where the costs of false beliefs are often measured in millions of dollars and thousands of lives, good science is especially important and fraud is especially costly. This is a large part of why Wakefield is so hated by many people.

What I don’t understand is how many children have been harmed by Dr. Wakefield’s research?

The short answer is "thousands". Wakefield's academic fraud single-handedly caused a series of major outbreaks of vaccine-preventable disease within Brittan. The anti-vaccine movement which he brought back to prominence has already caused many more such outbreaks. Here is a small sampling of relevant documentation.

On top of that, there's the matter of the children Wakefield harmed directly. While the absolute magnitude of harm may pale next to the above, these children were Wakefield's direct responsibility -- often entrusted into his care as a physician. It is difficult to explain the sheer magnitude of misconduct represented by a physician ordering a medically unnecessary colonoscopy and lumbar puncture of a patient under his care for research purposes. It becomes difficult to even contemplate the sheer magnitude of misconduct and irresponsibility involved when a physician also fails to get approval from the relevant ethics committees and informed consent. It's a clear violation of pretty much any of the relevant medical ethics codes and constitutes the committing exact same violations that Josef Mengele was famously guilty of... and then some.

Of course, this disregards things like the stigma created by the anti-vaccine movement and the resources needlessly spent countering Wakefield's efforts to undermine the world's disease prevention programs. Factoring them in only makes things a great deal worse.

How many have been helped by it? How many children are better because of it? Has anyone from the medical establishment studied that? I doubt it. If so, please get me the information.

I would argue that the answer to this is "none", but the truth is rarely that simple. Sheer serendipity means that some children have benefited from the increased attention on gastrointestinal issues in autistic children, for example, and I'm pretty sure that Wakefield's fraud has been generally beneficial to the college funds of the children of DAN doctors.

The concern I have is how the medical community is always looking for ways to prove someone else wrong. Isn’t the purpose of medicine to treat an individuals’ health issue and provide support to the family dealing with that issue?

To an extent -- although the most of findings against Dr. Wakefield have to do with his practice of medical science, not medicine per se. The purpose of medical science is to find out what is and is not true as well as what does and does not work.

This said, I would like to point out that the findings against him include him ordering unnecessary (and not clinically indicated) invasive, dangerous, and risky medical procedures for research purposes. In other words, he hurt and risked the lives of patients under his care for no benefit to them. He also lied to their families, claiming that certain procedures were "routine" when they were anything but.

If so, then why is everyone so polarized about the possibility that something could contribute to helping these children be in less discomfort?

"Because some people understand science and others don't," is the short answer. Those of us do realize that the vast, vast majority of promising new treatments -- for anything -- don't pan out. As most treatments involve substantial risks and notable side-effects, this means that using an untested treatment outside a formal research protocol (and sometimes even then) is flat-out irresponsible.

There are 1 million opinions about what autism is, what it isn't, what caused it, what doesn't cause it, how to treat it, how not to treat it, etc., etc. These opinions come from medical experts, parents, individuals living on the spectrum and everyone in between.

Yes, and in as far as many of these deal with facts, most of them are wrong. Any decent scientist knows this. That is why claims need to have evidence behind them, why we focus our investigations on those most likely to be true. When scientists have to divert their energies to investigating those theories without good evidence behind them, we all suffer. Nothing beyond a basic understanding of probability and game theory is required to understand that.

I know that when my daughter was diagnosed the number was 1 in 2,000 (girls). Now it is 1 in 91. I few years ago I was at a conference and I spoke to a respected expert on autism from northeast. This expert vehemently denied that there was any increase in the number of cases of autism. This doctor stated it was purely “better diagnosis and medical professionals looking for the signs”. This same doctor and many others have now retracted that position and admit there are more cases and something must be contributing to it, including the environment.

You're forgetting changes in diagnostic criteria and their practical implications. There may have been a true increase in the "real" autism rate over the last few decades, but all evidence is that if there has been one, it's been tiny, and not at all as significant as you are trying to portray.

Several years ago there was a communication method that was discovered in Australia called Facilitated Communication (FC). A professor from New York brought it to the US. There was much excitement about the prospects of a new communication method for individuals with autism. Many non-verbal individuals with autism started to communicate for the first time in their lives. Some stopped having tantrums, some started to relate to their environment better, some even started to speak for the first time. It is believed that many of these non-verbal individuals were intelligent, but their disabilities (autism) was hindering us from seeing through the behaviors and actually believe that these people had a new way to communicate. Well, the medical establishment was afraid of the ramifications of such a possibility and started demanding double blind studies, etc.

Umm... no. Scientific methodology requires that claims be substantiated. The proponents of facilitated communication made extraordinary claims about the efficacy of their intervention. If it actually worked -- and they'd had the evidence to back them up -- this wouldn't have been a problem. They did not, however, have this evidence.

For a while, it appeared that facilitated communication did indeed work. Realizing that a very large number of things could make an intervention appear effective when it really wasn't, however, scientists investigated.

An ineffective intervention -- even if it appears effective -- is merely a waste of time and resources. It is generally considered unethical to use an intervention which is known to not work. More than that, however, was at stake with facilitated communication, as you noted yourself in your next sentence.

The fact that these children stopped tantruming or communicated that some individuals were abusing them both physically and sexually made the medical community even more concerned.

The very fact that such accusations existed made determining the reliability of facilitated communication even more critical. If the accusations were true, any weakness in the evidence supporting facilitated communication could have been used to help the guilty parties get away with their crimes. If facilitated communication did not work, however, then these accusations were by and large false... and innocent men and women were being accused of things they did not do.

As it turned out, facilitated communication didn't work. While the facilitators believed it did, the vast majority of the "successes" of facilitated communication really depended on something called the ideomotor reflex. Facilitators were essentially using the children's hands as pointers on a Ouija board.

This was not a new problem, either. The parallels with the repressed memory debacle, just to throw out one example, are striking.

Of course, there is no proof that it didn't work in all cases -- it's quite likely that it did in some. The more fundamental problem, however, was that the facilitators couldn't tell whether it was working or not, tending to think that it was working when it really wasn't. This, in turn, lead to the "fall" of facilitated communication.

It's a shame, in many ways, that this happened. The philosophic base of facilitated communication was far better in a lot of key respects than the philosophic bases of most autism interventions.

They couldn’t believe that non-verbal, beautiful children (and adults) could possibly be the target of such abuse. They also were so concerned about these children, that they made it their mission to disprove the communication method entirely, without allowing time for further investigation or time to work with the individuals communicating to see if maybe there was anecdotal evidence of it being a reality.

No, they conducted that further investigation, as per the rules of science. Contrary to your insinuations, good experimental design does not consist of ensuring that an intervention cannot pass the examination. It consists of ensuring that tests are as fair and thorough as realistically possible.

Anecdotal evidence is subject to all sorts of bias, ranging from selection bias to expectancy effects. This is why few scientists trust it or view it as reliable.

No, we had o subject these people to testing and blocking the facilitator from knowing anything and disprove the possibility of it being real, because it would have thrown out 50 years of thinking that people like my daughter had an IQ of 35. The medical professionals that test IQ even admit that the standard tests aren’t valid for autism in many cases. The sad part is no one who was associated with FC claimed it was a cure. No one claimed it to be anything more than a communication method for some individuals on the autism spectrum.

That is what was tested, but that was only part of what was claimed.

Today, Amanda Baggs who has autism communicates through typing independently and she started out using FC.

The question is whether she learned to communicate because of FC or despite of it. Another part of the problem is whether what they had could properly be called "facilitated communication", as I've seen several descriptions which most certainly don't match what the peer-reviewed literature describes. I could discuss this for quite a while longer, but I do not see what the FC debacle has to do with Wakefield's misconduct and fraud.

The odd part is that medical establishment says she never used FC or that she is not communicating herself, even though she does it independently.

Umm... no. I won't deny that elements within the clinical establishment say this, but this sort of blanket statement is a drastic mischaracterization of the clinical and medical establishments.

Does this sound at all familiar to the current situation with Dr. Wakefield?

Nope.

Obviously, we are talking about completely different issues, but the same medical community that challenged FC challenges every possible thing that could upset the “established thinking” because they care about you and I and our children on the spectrum.

Umm... no. Again, the medical and scientific communities challenge every novel claim because science is the testing of claims.

I do believe they care, but I think they care more about being right then about being open minded to other possibilities. The scientific community spends their entire life trying to disprove things.

Umm... no. As I've written above, science is about testing things. As such, scientific claims are tested. This is very close to tautology.

The interesting part of all this is the fact that many believed to be on the autism spectrum are some of the brightest people on the planet - Einstein, Bill Gates, Temple Grandin, etc. People thought Einstein was crazy at the time. It is a normal reaction to try and disprove things.

Put bluntly, you are confusing burden of proof and assimilation bias... and the way you are defending a "doctor" who deliberately risked the lives of his patients for personal gain is disgusting.

It is our nature to be that way. Individuals with autism and their families deserve every opportunity to investigate anything that can help them to become more productive and happier citizens.

They also deserve accurate information and good ethics. The irony here is overwhelming.

If a child has a gut problem and eating a different diet can help, then why shouldn’t they have that? If there is a chance that one child is affected negatively by a vaccine, an environmental insult, a dose of antibiotics, etc. shouldn’t we be able to question the establishment and where appropriate provide remedies to address the problem?

If the child really does have a gut problem, then yes, that's accurate. If the child's parents are being lied to and told that the child has a gut problem when he really doesn't, that's another matter.

Similarly, the whole vaccine thing has been thoroughly investigated. It's not what's going on. Get over with it and move on.

Isn’t it our duty as citizens and parents to question the powers that be and when we think there is a problem to question it? I am not a conspiracy theorist, but the current climate sure seems to be one of covering up, diverting attention and condemning anyone who questions the status quo.

It certainly is such in anti-vaccination circles. In scientific circles, it's only condemning of those who break the rules of science in the name thereof (e.g. Wakefield).

As for parents -- note above. They, like autistic individuals themselves, deserve accurate information and good ethics. The scientific process is designed to produce the former. Many of the findings against Wakefield include bypassing safeguards designed to ensure the latter.

Yes, there are many who try to capitalize off of the less fortunate and parents and individuals with autism are targets for this. I understand that the medical community feels it has to protect us from everything, but we are intelligent people and I am tired of the condescending attitude that prevails in the medical community.

Intelligence doesn't assure good critical thinking skills. Jenny McCarthy and her followers illustrate this pretty spectacularly at times.

I also suggest that you start to learn about medical bioethics. Frankly, your comments show a startling ignorance of the subject.

We have rights, we have free will, we can read, we can judge for ourselves.

Well, yes. The same can be said of us (ie. autistic individuals). Doctors are well aware of this -- that is the reason why there is a requirement for informed consent which is pretty thoroughly enshrined in medical bioethics.

Allow us the opportunity to challenge your opinions, no matter how many letters you have after your name. Allow us to question your motives as well.

Science is all about this. Again, as stated before -- there are rules to science. Learn them. Follow them. Then, and only then, will your criticism make sense to doctors.

If I didn’t challenge the school system about my daughter’s needs, she would be in a much different place today. If I didn’t challenge the notion that she had the ability to communicate, she would be in a much worse place today. The sad part is, the reason people believe what I say is because of who I am, not because it is true or false. It is unfortunate, because so many more could be in a better place, if people believed in them too.

This is a pretty blatant red herring argument. School personnel aren't medical personnel, and the school system's attitudes and actions are not those of the medical establishment.

That said, I'm neither saying that doctors are perfect, nor that there isn't room for improvement in how things are done. Giving credit where credit is due and assigning blame where it belongs, however, are basic principles of ethical behavior. Medical doctors no more deserve the blame for the school system's misbehavior than my sixth-grade math teacher deserves the blame for the abuse I suffered in high school.

Your long, rambling, and incoherent defense of a monstrously irresponsible clinician and a spectacular academic fraud, however, is simply disgusting on multiple levels. Please -- study the issue more before you commit like this. As is, your actions are likely to cause more harm than good.

Edit: I just ran across this interview excerpt, which deals with a lot of the scientific issues I'm talking about above in a manner far better than I ever could. Read. Enjoy, too -- it's utterly hilarious in addition to being absolutely right.

On Disability, Accessability, and Analogies

2010-02-15T18:11:00.001-05:00

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...

On Knee Surgery

2010-02-06T22:16:00.001-05:00

On Tuesday, I had knee surgery. To be more specific, I had an arthoscopic procedure intended to help repair an old injury which had gotten very much out of hand.

To detail the situation, my left knee's lateral meniscus was out of place, folded on top of itself, and torn. There was also bone damage, and some of the remaining cartelage had become detached. While the meniscus wasn't salvageable, the remaining damage was successfully repaired... although there was a bone graft involved.

Needless to say, I am not enjoying the recovery. Among other things, vicodin has a very strong negative impact on my ability to follow the peer-reviewed literature. This is a major annoyance to me (frankly, more of one than the fact that I'm now way behind on my e-mails).

Oh, and bone grafts really, really hurt... even with major narcotics. Attempting physical therapy activities with a knee that's swollen to the literal size of a grapefruit isn't very pleasant, either.

In summary, I don't have much energy (or attention span) available for blogging right now. Sorry about that.

A Quick Note

2010-01-29T07:48:00.005-05:00

As I write this, I'm at the 17th Annual CARD Conference in Lake Mary, Florida, waiting for the poster sessions to open. I brought a copy of Ioannidis, 2008 for leisure reading, and was struck by the following quote:

On the other hand, research in a field with small studies, strong conflicts of interest, intense competition for generating 'positive' results and prior documentation of publication bias should have high prior odds of bias before doing the meta-analysis [25]. Even if no signal is shown in statistical tests for bias, the odds of bias remain high.

This description seems... awfully familiar. <sarcasm>I wonder just what field I'm thinking of.</sarcasm>

On Highly Misleading News Articles

2010-01-28T07:50:00.004-05:00

Catching up on a newsfeed, I came across this article. Suffice it to say I wasn't impressed -- at all.
In essence, the article reports data from the National Birth Defect Registry and notes that "over 60%" of autistic children entered into their database had some form of structural birth defect as well as an autism diagnosis. I was pretty surprised at this news -- just not by the fact that the number was so high.

My surprise was at two things: One, that they considered this news... and, two, that the number was so low.

You see, the registry relies on parents to input data on their children. Specifically, it requires parents to register their children with birth defects.

Obviously, this means that not every child with a birth defect gets entered. More importantly, parents will only enter their children if they believe that said children have birth defects.

Now... how many parents of autistic children consider autism a birth defect?

The news story suggests that the answer is higher than I thought. Of course, it may just be that some of the remaining 40% have other issues. I don't know -- I haven't seen the data.

This, of course, is what is known as selection bias. More specifically, it's a blatant case of sampling bias.

In other words -- why the heck is this news?

The answer: media sensationalism. Frankly, publication of this article fails pretty much any accepted standard of journalistic ethics, specifically because of accuracy standards and the harm limitation principle. On the other hand, that's never stopped the publication of countless other sensationalized articles...

Restraint & Seclusion Legislation National Call-In Day

2010-01-21T11:33:00.002-05:00

Today is Restraint & Seclusion Legislation National Call-In Day. Lacking the energy to do a proper write-up, I'm just going to copy ASAN's announcement on the topic.

I've made one minor alteration, by removing a text-based spelling out of a URL and replacing it with a link.

Dear Friends, Advocates and Community Members,

In one week, Congress will come back in session. The Autistic Self Advocacy Network (ASAN), in conjunction with the Alliance to Prevent Restraint, Aversive Interventions and Seclusion (APRAIS), is asking you to join us in a National Call-In Day on Thursday, January 21st to tell your members of Congress to support the Preventing Harmful Restraint and Seclusion in Schools Act (H.R. 4247/S.2860) introduced last month by Representatives George Miller (D-CA) and Cathy McMorris-Rodgers (R-WA) and Senator Chris Dodd (D-CT). This legislation would provide students with and without disabilities vital protections against abuse in schools. We are providing details on how to contact your members of Congress -- please distribute this announcement widely.

WHAT YOU CAN DO:

Please call this coming Thursday and encourage your friends, family and coworkers to participate by dialing the Capitol Switchboard at 202-224-3121 and asking for your Congressional representative to Co-Sponsor H.R. 4247, and your senators to Co-Sponsor S. 2860.

• To find out the names of your US Senators and Representative, click here
• Ask for the offices of your US Senators and Representative
• Ask to speak to the person working on education issues
• Identify yourself as a constituent and the organization that you represent (if any)

Message: " I am calling to urge (Senator y) to cosponsor S.2860, legislation preventing harmful use of restraint and seclusion in schools."

Message: "I am calling to urge (Representative z) to cosponsor HR 4247, legislation preventing harmful use of restraint and seclusion in schools."

Thanks for your advocacy. Increasing congressional support for these bills will help move them through the legislative process towards enactment. Please call on January 21, 2010 and tell your friends and family to join you. If you are interested in doing more, please e-mail us at info@autisticadvocacy.org for information about how you can arrange a meeting with your representatives to explain why this bill is essential or visit www.tash.org/aprais to learn more.

Regards,
The Autistic Self Advocacy Network and the APRAIS Coalition

On Exhaustion, Part Two

2010-01-09T21:07:00.000-05:00

I have memory issues -- pretty significant ones, at that. Without the extensive use of mnemonic devices and various external memory aids, I wouldn't be able to make it through the day. Despite this, my memory significantly outperforms most people's in many respects. It's one of the many ironic aspects of my life.

When I'm especially tired, however, another aspect of this pops up. My memory issues get worse and worse as I sink into exhaustion. As if this wasn't bad enough, however, when my exhaustion passes a certain point, I start to actually misremember various things. While this starts with minor details, it progresses if I don't get some desperately-needed rest.

I passed that point yesterday.

This is very much not a good thing. Fortunately, I detected what was going on pretty early and excused myself from an ongoing advocacy case to get the rest I needed. I won't be doing any direct work in that for a while.

A Few Things You Probably Didn't Know About Hyperbaric Oxygen Therapy

2009-12-30T01:38:00.000-05:00

As with megavitamin "therapy", hyperbaric oxygen as a "treatment" for autism can be accurately classed as too much of a good thing.

In medicine, too much of a good thing can be a very bad thing, and the research reflects this. Essential nutrients can easily become poisons if you consume too much of them, and many of today's common medical problems can be laid at the feet of too much consumption of essential macronutrients... and macronutrients are generally far better tolerated than the micronutrients which are used to excess in "megavitamin therapy".

In fact, hyperbaric oxygen chambers allow for a greater exposure to oxygen than would normally be theoretically possible. Put into more technical language, a hyperbaric chamber allows for partial pressures of oxygen within the lung that wouldn't be possible without active pressurization.

While this isn't the only mechanism of action for HBOT (for instance, the increased overall pressure has therapeutic value when treating decompression sickness), it's the main one, and the one which most of the various explanations of HBOT as an autism treatment hinge upon. Specifically, increased partial pressure is increased effective in-lung exposure to oxygen, and this is supposed to increase oxygen content in the bloodstream, increase oxygen flow to the brain, etc., etc.

Oxygen qualifies as a drug when used this way. As with vitamins, it's quite possible to overdose on it. This is known by a variety of names, but the most common of these are "oxygen toxicity" (for the phenomenon) and "oxygen poisoning" (for the medical condition).

Frankly, oxygen poisoning can be nasty. At lower levels, oxygen is a very good thing. At higher levels... it isn't. In fact, oxygen has neurotoxic properties at high enough doses, and these doses are acheivable even without a hyperbaric chamber.

So, if that's the case, why is it that that we don't see autistic children vomitting, suffering from tunnel vision and shortness of breath, convulsing, twitching, and generally showing the symptoms of oxygen poisoning after HBOT? The answer is actually rather simple -- and says a lot about the people peddling HBOT for autism.

The partial pressure of a gas within a mixture is equal to the percentage of the mix formed of that gas times the total pressure of the gas. So, for instance, the partial pressure of oxygen in a gas mixture which contains 20% oxygen and is held at 1 bar (normal atmospheric pressure) is .2 bar. Doubling either the percentage of gas or the overall pressure of the mix will also double the partial pressure of oxygen, yielding a partial pressure of .4 bar.

It's worth noting that a partial pressure of up to about one bar (depending on altitude, weather patterns, and just about anything else that effects atmospheric pressure) is achievable without pressurization -- 1 bar is the partial pressure of oxygen in a pure oxygen "mix" at normal atmospheric pressure. Keep that in mind as I continue.

A recent paper, using fairly typical practice for HBOT treatment for autism, used a 24% oxygen mix at 1.3 bar of pressure. Doing the math, this yields a partial pressure of about .31 bar... or roughly equivalent to what could be acheived by using a 31% oxygen mix without the hyperbaric chamber. It's actually pretty trivial to go to a SCUBA supply shop and buy a tank full of a mix that's richer in oxygen than that.

Of course, typical air is roughly 21% oxygen, meaning that the gas they used was only trivially different from room air in terms of oxygen content; the increase in partial pressure was almost entirely achieved by a raise in pressure.

While this sort of level is typical in practice, however, it's worth noting that I've seen documentation of much more "intense" regimens, ranging up to 100% oxygen at 1.5 bar. Caveat emptor -- and beware oxygen poisoning.

Finally, I suppose I should also mention that there's a second theorized action mechanism, involving gas transport via blood plasma (as opposed to the hemogloboin-based transport of red blood cells), which is increased substantially under hyperbaric conditions. This mechanism is equally implausible for reasons which are much harder to explain, but I should probably mention it in the interest of fairness.

Still -- 1.3 bar isn't enough pressure to make much of a difference there, either.

A Quick Note On The H1N1 Shot

2009-12-21T18:13:00.001-05:00

I just got my H1N1 shot. I don't feel any more autistic.

That is all.

A Brief Note

2009-12-17T00:10:00.005-05:00

Two of the most accomplished autistics in the world discuss their histories here.

Note the common threads between how they were taught and educated.

According to many notable "authorities" on autism, this is precisely the wrong approach to take. I find this fact to be extremely interesting -- and not in a good way.

Some Recent Advocacy Efforts

2009-12-11T17:13:00.002-05:00

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).

A Note on Free Information

2009-12-10T18:41:00.000-05:00

Bad information is far more common than good on the Internet, especially in complex and often ambiguous fields such as medicine. This should not be a surprise to anyone -- while it takes a great deal of effort to assemble good information, bad information is far easier to put together.

As such, finding the good information -- via free services, anyway -- is often a matter of combing for a metaphorical needle in a haystack, and the information you find is often highly skewed in a variety of ways even when it is of decent quality.

I regularly read blogs maintained by doctors and researchers, for instance. While they provide news and often-educational commentary, their commentary on basic issues is usually provided on an ad hoc and incomplete manner as parts of explanations on other matters. This is fine if you already understand the basic issues involved, but if you're trying to educate yourself on issues surrounding the use of the P value in hypothesis testing, for instance, comments on what Study X did wrong will only take you so far.

This is particularly vexing when running a blog and attempting to provide references for the concepts in question. I try to write my articles in such a way that a naive reader can educate himself on the relevant issues with a minimum of fuss; as such, I often need a bit more than I can easily find in other blogs.

Because of this, it was an extremely pleasant surprise for me to find out that one of my favorite basic introductions to P values and the general nature of statistical hypothesis testing is available for free. I'd originally gotten access to it through my university, so I didn't realize at first, but this really has renewed my awareness of the free articles available on the Internet -- and the value of the available literature on how to interpret the literature.

In other words -- I'm happy about this, even if I'm far less so about the way my left knee's acting up. Joint instability is not fun.

On Exhaustion

2009-11-25T13:10:00.000-05:00

Over the last month or so, I have been pushing myself pretty hard on the social/political/advocacy front, mostly trying to fight a battle that I'm utterly unsuited for. This has left me rather thoroughly exhausted, emotionally speaking, and my blogging has suffered for it.

I'm sorry about that.

On the other hand, I can't allow peddlers of pseudoscientific medicine endanger children -- and especially not the children who have entrusted to my care. That sort of thing takes priority over blogging, no matter how exhausted my efforts leave me.

I also attended a colloquium presented by a very prestegious behavior analyst yesterday. Specifically, he was presenting research which attempted to determine whether conditioning research (originally done on pigeons) would apply to the use of FCT to reduce problem behavior in children.

The people implimenting the program weren't even blinded to the specific experimental hypothesis. Gyah. When the entire experimental response is explainable entirely by expectency effects, you know you have poor internal validity...

About Me

2009-11-09T17:31:00.001-05:00

As part of the process of applying to Ph.D. programs, I've had to write a statement of purpose. What I wound up with was an unusually frank declaration of parts of my history that I don't normally talk about and of who I am today. It is perhaps longer than I'd originally intended, but that's fine by me.

I debated posting it here. Beyond simply being long and highly personal, parts are probably overly technical for a blog post. As such, I've reached a compromise of sorts and edited out two paragraphs, both of which are technical descriptions of past research projects.

In any case, the edited version is as follows:

My love of psychology started in the summer of 2002. At the time, I was a hopelessly naïve undergrad with all of the self-education and executive functioning skills that they teach you in a public school program for the emotionally handicapped. I was studying computer science even though I was quickly coming to understand that I wasn't terribly suited for the discipline and was overwhelmed by unfamiliar academic demands. In an attempt to find an easy class to bolster my GPA, I decided to sign up for an introductory psychology class.

It was a decision which changed my life.

For the first time, things which other people said and did – things which I'd never truly understood – started to make sense. Other people started to make sense, not because of projective heuristics which had never worked for me ("Put yourself in their shoes!"), but rather because of scientific theories laid out in a manner that I could actually understand. It took me a while to fully abandon my childhood dream of becoming a computer programmer, but once I did, I never regretted it.

Of course, this doesn't mean that everything was perfect. I found the scientific study of human nature to be endlessly fascinating, but it didn't exactly take me long to realize that many of the theories and rules I was studying simply didn't apply to me. My memory shows little to no primacy effect (and a very strong recency effect), my cognition tends toward algorithmic rather than heuristic processes, my sensory thresholds tested as far lower than those of any of my classmates… the list goes on and on.

In other words, it really drove home the fact that I was different, and that these differences from my peers were anything but minor. I even had a name for these differences: "Asperger's Syndrome".

When I'd first received the diagnosis, it had seemed like just another diagnostic label in a long series of often-inappropriate labels attached to me by psychiatrists. It was then that I started to realize that it was something more.

Throughout this, I continued to take every psychology class I could. My love of understanding, of knowledge, and of psychology was one of the few things that was constant during this time. It remains constant to this day – I am never quite so happy as I am when learning new things about my discipline of choice. I also came to enjoy cultural anthropology and scientific sociological approaches to small group dynamics, two disciplines whose overlap with psychology is rather difficult to deny.

At the same time, I began to seriously develop my ability to critically evaluate the scientific literature. I became interested in individual studies rather than books, I started to realize the gaps in our knowledge (although this process would continue to develop for a long time), and I started to seriously consider what I wanted to do with my knowledge.

Still hopelessly naïve and buying hook, line, and sinker into the oft-repeated clinical rhetoric that Asperger's was distinct from "proper" autism and was a more "mild" form, I started to both over-complicate and oversimplify things in my head. Desperately trying to understand how I was different from my peers, I sought to understand autism, figuring that the best approach to understanding answering this would be to understand the differences between the "autistic" and the "normal" groups, with myself being somewhere between the two. A number of details about my neurology and the way my brain works somehow got lost in the mix.

I felt that the best way to understand myself would be to come to understand the differences between an autistic mind and a non-autistic mind. To do this, I believed that the best place to start would be to run a series of external validity studies on the more noteworthy studies on non-autistic psychology, starting with Kahneman and Tversky's classic heuristics and biases studies. This would produce a baseline of sorts – not only of the areas in which differences could be found and targeted for further investigation, but also of those areas in which autistic and non-autistic processes were similar or the same.

Much to my disappointment, I soon found that while such studies had been done on occasion (e.g. De Martino et al.'s 2008 paper on framing effects), they'd been done only in a piecemeal and ad hoc fashion, and were often interpreted through a biased framework. I wanted to rectify that.

By this time, I had graduated and decided to spend some time getting clinical experience, both to shore up weaknesses in my understanding and to learn about autism-related clinical practice. At the same time, I used the time I was no longer spending reading coursework-related materials to focus more on reading about autism and related topics.

It took a while, but I came to understand just how naïve I had been. Tracing a number of the claims that I had taken for granted back to their origin, I soon discovered that many of them were based on shaky evidence – or were simply made up in a number of cases. I discovered that many of the researchers whose conclusions I'd previously accepted had little to no empirical basis for their statements, and that even the DSM description of autism had some pretty serious issues (e.g. the assertion that most autistic individuals are mentally retarded; see Edelson, 2006 for review and discussion).

I saw the state of the modern autism clinical community. I met children who'd been restrained and secluded by schools that didn't know how to deal with them. I saw intelligent, loving children drugged into a stupor by their clueless and frustrated parents. I met teenagers who had suffered even worse bullying than I had been in my own childhood. I met desperate parents who, not understanding scientific medicine, took pseudoscientific treatment approaches that endangered their beloved, if misunderstood, child's life. I read absurdly dehumanizing books about people on the spectrum, some even going so far as to dismiss the idea that we could have any sort of innate claim to humanity (e.g. Barnbaum's The Ethics of Autism).

I also both met and read the writings of "properly" autistic adults who were and are very much like me, facing many of the issues that complicate my life. I found others like me, and a community of people who both understood and accepted me. Bit by bit, my naïveté was stripped away.

It was in the middle of doing this that I, in an attempt to learn more about psychology and to attain clinical credentials useful in the world of autism, applied to Nova Southeastern University's postgraduate applied behavior analysis program. I learned about the early history of behaviorism, about biases in research, about the practical consequences of woefully inadequate ethical codes which are drastically under-enforced, and far, far more.

I also learned about the utter cluelessness and spectacular naïveté of many of today's professionals. In one notable incident, I had to correct a classmate – who had been working in the field of autism services for years – on the statement that the vast majority of autistics were mentally retarded (and got fervent denials of my correction even after I cited the relevant reviews). In another, my class reacted with shocked horror when I pointed out just how a professional could manipulate a client's family to worsen the client's self-injury (and provided a plausible, if highly unethical, motive for doing so). The thought that a professional who would put financial gain before a client's welfare could exist was apparently shocking to them. There were countless other such incidents, some of which involved my teachers.

This isn't to say that everything was bad (and, in fact, this was far from the case). It is to say that I started to understand just how badly things needed – and still need – to change. What had started as a simple quest for self-understanding grew to be more, because understanding is needed to produce that change. The practical consequences of ignorance are too great to ignore.

And, accordingly, I came full circle. I still want to conduct the external validity experiments I'd originally intended to, but I've come to understand that the importance of them – and of other, similar research – extends far beyond the realm of academic understanding and my personal quest for knowledge.

The fact that gaining that knowledge involves doing what I love and exercising my strengths is just icing on the metaphorical cake.

A Little Gem

2009-11-01T16:49:00.002-05:00

I came across the following quote while reading Snodgrass, 1992 as part of my research into quackery:

Methylation of mercury compounds increases their ability to enter the CNS and
also prolongs their stay in the body. Since mercuric ions can be biomethylated
by cobalamins, persons taking large doses of folate and B12 may be more likely
to be harmed by mercury should they contact it. (p. 51-52)

The irony here is pretty spectacular.

Reference:

Snodgrass, S. R. (1992). Vitamin neurotoxicity. Molecular Neurobiology, 6, 41-73.

Why I haven't been posting that much lately

2009-10-29T22:04:00.000-04:00

Around a week or two ago, I found out that this conference is to be held literally within walking distance of my house. To be blunt, it's a spectacular quack convention. Wakefield is keynoting (although the "keynote" will be delivered at the end of the conference in a notable break from standard protocol). The list of presenters is practically a "who's who" of the quack community, and the conference is to be held by one of the major national anti-vaccination organizations.

I am thoroughly disgusted by this and am presently trying to organize a protest. Unfortunately, this leaves me with limited time (and energy) to blog.

Relevant support -- from anyone who can provide it -- would be greatly appreciated.

Reasons Why The Autistic Community Should Fight The Anti-Vaccination Quacks -- A Working Document

2009-10-28T16:26:00.002-04:00

This is the working document for a future entry. The items below are not in any particular order (I plan to do a countdown, listing them in ascending order of importance and descending number), and the below is not a complete list. I am more than open to suggestions and I will add links and references when I finally get around to posting the final document.

1. "Don't vaccinate your children because vaccines cause autism" demonizes autism, portrays autistics as "damaged goods", and contributes immensely to psychosocial stigma.

2. It's the right thing to do.

3. "Vaccines cause autism" is wrong -- in the sense of "incorrect". We have enough junk science in the field of autism even without the vaccine causation hypothesis.

4. The vaccine/mercury causation hypothesis is the nominal basis for a number of harmful quack treatments, such as chelation and the Lupron protocol.

5. Allies against the anti-vaccination quacks are generally highly motivated, skeptical, highly intelligent, and/or well-placed to help us fight other forms of quackery. The foot-in-the-door phenomenon applies, and the alliances formed accordingly can be used to our political advantage.
6. We can make a difference in the fight.

7. Sitting back and allowing one form of quackery to go unfought leaves the door open to others.

8. The anti-vaccination movement kills people. As the anti-vax movement targets the families of autistic children, this often means that it's us or our families who get sick and die.

9. Killing or recklessly endangering other people in the name of preventing people like us from existing is most certainly not acceptable.

10. Anti-vaxxers guilt-trip the families of autistic children over vaccinating their autistic child. This can have tragic consequences for autistic people.

11. The anti-vaccination crowd often acts as a concerted mob, bullying and acting to exclude people who disagree with them (and especially those on the spectrum who do so). This greatly adds to the difficulties in having reasoned discourse between autistic individuals and parents, and contributes to our exclusion from the discussion about autism. (Thanks to Kim Wombles)

On Attitudes

2009-10-14T14:51:00.003-04:00

I don't think any regular readers of this blog will be terribly surprised to hear that the sort of attitudes they take and encourage their members to take is one of the things that most continuously frustrates me about the various parents' groups in the autism community.

It is worthwhile, however, to once and a while contemplate just what a healthy attitude is. It's also worthwhile to acknowledge that organizations dedicated to other disabilities often get it right.

I was recently reminded of this by a series of ads by United Cerebral Palsy. Some of them were especially classic.

These aren't all recent, of course, but they do help to illustrate what a healthy attitude towards a disability consists of. Now if only the autism organizations would start to follow UCP's lead...

Vaccination Quackery Revisited

2009-10-12T10:55:00.000-04:00

The following is adapted from an e-mail I recently sent. The response I got was... "interesting".

I am a scientist by training. When asked scientific questions, I tend to answer them as a scientist. Scientific questions, like the question of whether vaccines cause autism, are not about belief. They are about evidence and facts -- and the fact is that the courses of action suggested by the anti-vaccination movement kill people. Worse, the advice and propoganda in question kill people, and not only the people who take it. This is why I take the time to study something before I comment on it or talk about it. I'm aware that bad advice and bad information kills.

I am not joking about this. I consider this sort of thing to be a (literally) deadly serious matter. I also don't make unqualified or categorical statements in this sort of matter without a lot of very strong evidence.

England has recently seen a resurgance of measels, resuling in considerable suffering and death. Australia has seen a tragic pertussis outbreak. A very large number of illnesses and deaths here in the US can be directly attributed to vaccination refusal. This is without breaking herd immunity -- and the thought of that happening (what happened in a small segment of Australia), frankly, scares me.

In addition to this, this sort of thing creates and exacerbates the problem of what are known as nocebo and harmful observer-expectency effects. To give you an illustration of how powerful nocebo effects can be, chemotherapy trials have been known to cause the control group (who are not recieving real drugs) to lose hair, start vomitting, and generally suffer all of the negative side-effects of chemotherapy... despite having only been given a saline drip.

This happens purely because said controls expect it to. It's not an effect of the drug, which they haven't been given.

Now, if this can happen with a saline drip (which is about as harmless as it gets), just what makes people think vaccines are immune from this? Things get worse when harmful observer-expectancy effects are factored in. Expectancy effects have killed people.

Of course, all of the above consequences could be forgiven if there were a legitimate danger the anti-vaccination groups were warning against. Leaving aside just how insulting the "don't vaccinate your kids because vaccines cause autism" rhetoric is (and how, exactly, do you think it makes autistic individuals feel when they see parents going on national television and advising other parents to risk both their children's lives and the lives of other people's children rather than risk having a child like them?), there is also the matter of the truth of these claims, which are pretty much universally bunk.

To provide an illustration of just how bad it is, the e-mail which provoked the original version of the above linked me to this website. I didn't have time (or the stomach) to go through and debunk everything said there, but I did provide an example to give her some idea of just how bad its information is.

The site's first citation to "prove" that flu shots are dangerous (and thereby presumably the one they regard as "best") is a paper by Mark and David Geier, which was published in 2003 in the Journal of American Physicians and Surgeons.

The authors of that study are infamous quacks who are guilty of academic fraud and who make their living by chemically castrating children. The "journal" it was published in is an infamous hotbed of quackery which, among other things, has published politically-motivated articles claiming that abortion causes breast cancer and that shaking your baby is safe (and that shaken-baby syndrome doesn't exist), racist articles with utterly absurd claims about illegal immigrants (e.g. this one), and articles condemning both the practice of science-based medicine (e.g. this one) and peer-review (e.g. this one).

And this is without going into the methodological quality of the article (poor) or any of the scientific tactics I'd use to demonstrate that the article was utterly, totally meaningless.

That is just one example. Think about it.

On "Restricted and Repetitive" interests

2009-10-09T23:25:00.000-04:00

Everyone has their hobbies, their interests, and their experiences. These, of course, vary... but their usually is a pattern to them.

And no, I'm not referring to the relationship to one's life story. If that's incorporated, there's always a pattern to them.

This isn't to say, mind, that the pattern is always the same... or even of the same type. Every person has their own pattern of interests.

This pattern says a lot about that person, too... but this isn't really the forum for a discussion of that.

Perhaps more importantly, there's a relationship between components of this pattern. My interest in Japanese langugage, for instance, is strongly related to my interest in Japanese culture. This, in turn, is a portion of my interest in cultural anthropology. My interest in cultural anthropology is a minor focus area within my interest in the scientific study of people. To be more specific, that particular interest extends across psychology, microsociology, and cultural anthropology. How my interests in psychopharmacology and experimental methodology tie into this should be pretty obvious.

The thing is, autistic interests tend to follow generally different patterns than neurotypical interests. The connections (and definitions!) of autistic interests tend to be different as well.

To me, there's an infinite variety in the peer-reviewed literature. By reading through it, I can learn about endless topics, find out all sorts of really neat things... it's like an infinite and ever-expanding cornucopia of knowledge about whatever obscure topic I might want to learn about. I can get lost within that for hours, days... or even weeks.

To someone else, it probably looks like I'm just reading all the time -- a "restricted" and "repetitive" interest. But... what of the main activity of many biblical scholars? What do you call it when they not only read all the time, but read the same book? Similar things can be said of most, if not all, autistic perseverations.

To put it another way, both the degree to which something is "restricted" and the degree to which it is "repetitive" are highly subjective.

Of course, this isn't to say that an unusual pattern of interests doesn't come with its fair share of disadvantages. For instance, someone who loves sports can always find someone to chat with about the latest Cubs game (or whatever). Someone who loves romance novels can usually find someone to ask if they've read any good books lately.

Now... imagine the stares I'd get if I were to just casually ask someone, "Read any good methodology papers lately?"

That is, in my opinion, the largest problem with having a "restricted and repetitive" set of interests.

Megavitamin Stupidity, Part Two

2009-10-05T10:16:00.000-04:00

As I observed in a previous post, people tend to think of the effects of having not enough of a vitamin, but tend to ignore the effects of having too much. As such, I've compiled a list of some of the known effects of the latter. This is not intended to be a comprehensive list or anything -- just a simple list of some of the health hazards of having too much of a vitamin in your system. It's not even a full list of the effects of every vitamin, just the few that were easiest to find data on. As I note below, my research methods for this were not anything special.

It's also worth noting that there are differences between chronic and acute vitamin toxicity. Acute toxicity generally requires a higher dose of the vitamin in question, while chronic effects occur from a lower dose over a longer period of time. Both can present substantial health risks.

Finally, parenteral administration is generally more dangerous than oral. There are a number of safeguards that normally prevent the body from absorbing a massive overdose of certain vitamins that don't necessarily apply to "vitamin shots" (thiamine comes to mind here).

My research strategy was hardly anything to write home about -- I went down to NSU's medical library and checked out a textbook. This isn't information that's hard to come by... unless you're trying to get it from the various fad "health gurus", from DAN doctors, or from other, similar sources.

So, without further ado...

An overabundance of vitamin A is associated with hair loss, ataxia, bone and muscle pain, cheilitis, conjunctivitis, headache, liver damage, hyperlipemia, hyperostosis, membrane dryness, itching, pseudotumor cerebri, various skin disorders, and visual impairment. Vitamin A also acts as a teratogen, but this usually isn't relevant to the use of DAN-reccommended megavitamin supplements (i.e. I've never heard of a DAN protocol being used to treat a pregnant woman).
Vitamin D poisoning can result in hypercalcemia, hypercalciuria, anorexia, nausea, vomitting, thirst, polyuria, muscular weakness, joint pains, diffuse demineralization of bones, disorientation, and irreversable calcification of the heart, lungs, kidneys, and other soft tissues. The vast majority of the death-by-vitamin-overdose case reports I've read (which may or may not be a representative sample) have been due to hypervitaminosis D.
Vitamin B3 overdose effects depend on the specific form of the vitamin involved. Nicotinic acid toxicity is associated with vasodilation, burning or stinging sensations in the face and hands, nausea, vomiting, diarrhea, hyperpigmentation of the skin, abnormal glucose tolerance, hyperuricemia, peptic ulcers, hepatomegaly, and jaundice. Nicotinamide overdose has been known to cause liver damage and may cause cancer (further research was required according to the textbook I read, which was published in 2001. I have not conducted a search for more recent information).
Chronic overdose of Vitamin B6 has been associated with neuropathy (motor, sensory, and peripheral), vesicular dermatosis, loss of reflexes, impaired touch sensation in limbs, dizziness, nausea, breast discomfort or tenderness, and photosensitivity.

This is nowhere near a complete list, even from within the sole book which served as my reference. Think on that.

Reference:

Rucker, R., Suttie, J., McCormick, D., & Machlin, L. (Eds.). (2001). Handbook of Vitamins (3rd Ed., Revised and Expanded). New York, NY: Marcel Dekker, Inc.

A Brief Comment on Experimental Design

2009-10-04T18:50:00.003-04:00

In a hilarious demonstration of why proper experimental design (and specifically data analysis) is so important, researchers managed to "show" (in a recent conference poster) that a dead salmon responds to human emotion.

Obviously, there was no such thing actually going on.

The correct conclusion? That if a study isn't properly designed (and I include analysis as part of the design), it's quite possible for it to find effects that aren't really there.

We see this sort of thing all the time in the field of autism research... and no small part of it is due to groups like DAN. Gyah.

Megavitamin Stupidity, Part One

2009-10-04T17:22:00.001-04:00

The principle of homeostasis is one of the most basic in medicine. My experience with parents of autistic children has been that they don't understand this.

Oh, don't get me wrong -- it's not their fault. It's hardly reasonable to expect every parent of an autistic child to have an understanding of it.

To expect at least most them to have heard about it, yes -- it's covered in most high-school biology courses (or it's supposed to be). Understanding, however... let's just say that American high schools often fail in their goal of promoting understanding of the subjects they're supposed to teach.

In essence, however, the principle states that organisms exist in a state of balance, maintained by a series of feedback mechanisms. Too little of something important can be bad -- but so can too much of the same thing. While the relationship between insulin and blood sugar is perhaps the most common example of this referenced in a purely medical context in popular culture (mostly because of the conditions of hyperinsulinemic hypoglycemia and diabetes, each of which is defined by the a type of breakdown of this balance), there are countless others.

So -- why is this important for understanding the problems with megavitamins?

Well, the principle of homeostasis accounts for why the same thing can have radically different effects depending on how much of it is involved... or, for that matter, why extremely low amounts of it and extremely high levels of it can have the same or similar effects.

It's all about the dosing... which is where the problem comes in.

Vitamins, like all other chemicals (and yes, vitamins are chemicals -- get over it), are subject to this. Simply put, it's quite possible to overdose on them.

I have heard -- anecdotally -- mentions of a child overdosing on Vitamin C from drinking too much orange juice... but most of the stories I hear of involve supplementation.

No, not megavitamin supplementation, either. I'm talking about regular, normal, over-the-counter dietary supplements. There's a very good reason why modern multivitamins are really, really careful about their iron content, for instance (although that's technically a mineral, not a vitamin).

Vitamins are one of the classic cases of "a little medical knowledge is worse than none" -- and, as I write this, I'm visualizing an exchange:

"But it's good for you!"

"Yeah, well, it's good for you to have enough... too much and it becomes a poison. Homeostasis and all."

Anyway, the point of all of this (beyond general medical education) is pretty simple -- as with all drugs, it's quite possible to overdose on vitamins.

And yes, vitamins, when taken as suplements (at least -- their status as such when consumed in food is more debatable), are drugs.

There's even a medical term for this -- it's called "hypervitaminosis".

So, in short -- people always tell you about the health benefits of vitamins. They don't tell you about the hazards thereof. Going overboard is stupid and can risk serious health problems.

QED.

Next time, I'll detail exactly what happens with overdoses of certain vitamins. I think my readers will be unpleasantly surprised.

"I Am Autism"

2009-09-26T14:24:00.005-04:00

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.

Another Recent E-mail

2009-09-25T14:41:00.004-04:00

On a note related to my previous entry, the following is the full (minus the addressing line) of a previous e-mail in the same conversation as the last one.

Thank you for your support.
It's worth noting that one of my introductory posts mentioned both that I've recently completed the postgraduate coursework for BCBA certification and that I perseverate on research... in addition to the fact that I am seeking additional (supervised) clinical experience.
The first and last of these should have indicated pretty firmly that I do not believe that seeking help for your children is inappropriate, as some of those on the list seem to think I do. If this were the case, I would neither have taken the time to gain credentials related to providing this help nor sought a job that involved providing it.
The first two, on the other hand... I am uncertain as to how to phrase this politely, but...
There are over 1,500 people on this list. Many, if not most, of them are parents of autistic children. Of that number, only one person has thought to write me off-list regarding anything I've said on it (excluding my statement that I was seeking work -- if that is included, the number increases to two). No one has thought to ask me about research studies (which I read for fun and have extensive knowledge of). No one has even thought to ask me to reccommend articles, studies, or references -- on list or off. This is despite the fact that autistic individuals almost inevitably acquire a tremendous amount of detailed knowledge of the subjects of their perseveration. Many, if not all, of you have extensive experience with this phenomenon.
What's more, we almost always enjoy talking about the subjects of our perseverations. Again, many, if not all, of you have extensive experience with this phenomenon. I assure you that I am no exception on this count... and would go so far as to say that I'm near-starving for intelligent discussion of the research (in large part since I can't afford to go to conferences all that often). I only know one other
individual on the spectrum who actively perseverates on research and is at anything approaching my educational level (in fact, I consider her to be considerably above it despite the fact that she has less formal education than me). I always look forward to and enjoy our interactions -- despite the fact that they seem to almost inevitably break down into a series of misunderstandings -- because I always learn a tremendous amount from them.
Additionally, the nature and frequency of my responses should have been a pretty substantial indicator of my willingness to respond to that sort of thing. I have even made explicit offers to provide information or to elaborate on points. I cannot recall anyone taking me up on any of these offers.
I'm aware that there are other factors potentially involved (a desire not to impose on me, for instance), but... over 1,500 people. Even if half of that number was composed of service providers, that would still be 750 parents.
So, for the part that I'm not really sure how to phrase politely -- just what sort of impression do you think I get from these facts?
In addition, every post I've made has included a link to my blog. Many of the posts there are aimed at helping parents at some form or another. Many of them talk about things that I've mentioned only briefly on this list.
I have not, to date, recieved a single comment on any of them from anyone who arrived there by following this link. I also have the ability to make this statement.
Actually, I'd go so far as to say that I haven't recieved any indication that anyone here has even followed that link except for the one person who thought to write me off-list regarding something I'd said on it... who mentioned having done so in a private e-mail.
What sort of impression do you think that makes?
I'm bringing this up because, apparently, many on this list have accused me of not attempting to (or being unable to) take another's point of view or to empathize with another's positions. In fact, this is one of many largely unfounded autism stereotypes... and, if it is true in this case, it most certainly is not unique to my side of things. The above example was, frankly, the gentlest and least potentially controversial way I could think of to point that out. There are many, far harsher and more critical, ways I could have chosen.
This way also had the advantage of pointing out a resource that some of you may have missed.

A Recent E-mail

2009-09-25T14:31:00.003-04:00

The following is from a recent e-mail sent in response to an accusation that I lacked empathy after my attempts to explain that anti-autism hate speech is offensive to several curebie parents. I've modified it somewhat (taking out an introductory dependant clause in the first paragraph and removing a parenthetical reference to another list-member) to better fit the format of this blog and to respect the privacy of the individuals involved, respectively.

It's not so much that I'm oblivious to the idea that my words may cause pain as that I view that pain as unavoidable. "Autism" is a description of a set of neurological and psychological differences -- differences in the way our brains work when compared to yours. Setting aside the question of whether or not those differences are deficit-driven and/or pathological, how exactly do you think it makes us feel when our parents say that they hate the way we think and view the world? That is what autism is.

"Love the child, hate the autism" is impossible. You cannot separate the way someone's brain works -- the way they think, the way the feel, the way they remember things, the way they view the world, all of which are described by the reification we call autism -- from who they are.

What's more, children grow up... and an autistic twenty-five-year-old is a very, very different creature from an autistic five-year-old. When your children grow up and view these conversations, how do you think they'll feel, given what I described above? Leaving aside the question of whether or not vaccines "cause autism", how do you think that your children will feel when they see you advising people to risk their child dying rather than growing up to be like them? Is that not saying that a life like theirs is worse than death? How do you think any child would feel, growing up to read their mother's public and published accounts of how raising them was a "nightmare"? We've lived through that.

This, not merely the quackery (although that is awful), is the worst aspect of the whole DAN-and-Generation Rescue phenomenon... and I sincerely doubt that anyone on this list wants their child to go through this sort of pain.

I am painfully aware of what this sort of thing does to a person. I have had the unfortunate experience of seeing people go through this. It is not pleasant. This is a major understatement.

So -- when given the choice of trying to prevent this, and causing pain to parents as they mourn the loss of a "normal" child who was never born, or staying quiet and watching as countless children grow up to experience the same unspeakable heartache that countless friends of ours have lived through... what would you do? When confronted with the memory of someone's tear-filled face as they ask why their (loving, but misguided) parents hate them, what would you do?

(For the record, the last question above is the result of my attempt to translate some of my own experiences into neurotypical terms. Distraught expressions play a role in neurotypical cognition that they do not in most autistics' emotional processes. I've never physically been there when asked that question... but that doesn't matter to me; the emotions would have been exactly the same.)

On Science Fiction and Identity, Part One

2009-09-13T21:21:00.002-04:00

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?

Answering Machines

2009-09-11T16:45:00.002-04:00

I hate answering machines. I really, really do. I hate voicemail, too.

Okay, so I don't really hate mine. I can listen to messages someone else has left me just fine.

I just have trouble leaving messages.

And yes, this can act as a barrier to employment -- I get incredibly awkward when trying to leave someone a message... and three guesses what that does to the impression my message leaves a potential employer with?

On the More Subtle Forms of Discrimination

2009-09-05T23:57:00.000-04:00

Ever since I completed my last practicum, I've been job-hunting. Not only do I need income, but I need additional supervision time before I can sit the BCABA exam.

I've done the full coursework for the BCBA exam, but I need to get a Master's before I can sit that one. The need for additional supervision is just part of that.

Anyway, that last part means that I need to find employment in a fairly narrow field. I'm not particularly picky about the broader type of program I'll work in, but I am picky about ethics. Frankly, I believe that the code of professional conduct that the BACB enforces is absurdly insufficient (and insufficiently enforced, but that's another matter). I've already had to throw out several of the opportunities that I've found because of this. I categorically refuse to implement a program that involves restraint or seclusion, for instance.

One of the big obstacles towards me finding work in the field, however, is that I don't know who's hiring. Online listings haven't been much help here, either.

Normally, social networking strategies make finding a job -- or at least finding who's hiring -- under such circumstances fairly easy. I am spectacularly bad at them... and saying so is a massive understatement.

In as far as this is inseparable from the fact that I am autistic (let's not go into the chicken-and-egg mess that a discussion of causal attribution here would get into), this problem could be viewed as the result of a form of statistical discrimination. Personally, I just view it as an annoyance and another one of life's many challenges.

Another example of this sort of thing that I've run across has been in the realm of employment applications. Since college, I've accumulated what I like to think is a pretty good collection of professional references. My academic references aren't bad, either.

However... due to their nature (i.e. most of them are people I've worked with), I'm S.O.L. when a potential employer asks for non-family, non-professional references. Sure, I know people outside of work and family, but there aren't exactly that many who I would feel comfortable with asking something like that. It's a real dilemma, and not an easy one to solve (especially since I did two practicum semesters at my postgrad university, meaning that I've worked with most of my professors).

And to think that this is supposed to be the easier set of references to get.

What's worse is that I know exactly why they want that sort of reference. It's hard to be upset with them for that.

That doesn't change the fact that it can easily be a major barrier to employment for an autistic individual.

Scary, scary figures

2009-09-04T16:48:00.000-04:00

I recently came across this piece by the LA Times. Frankly, I'm scared. Epidemiology may not be my field, but this is far, far worse than I'd imagined.

The mathematics of mass vaccination are complicated, and the level of vaccination required to achieve herd immunity varies between illnesses (or even strains of the same illness), but I can't think of any illness where a vaccination rate of 13.5% is enough to provide such an effect. That is, admittedly, the most extreme example on the list, but I could say the same of a vaccination rate of 50%, which is much more common. Generally speaking, a vaccination rate of anywhere from 85% to 95% is required for herd immunity to provide any real protection.

They might have well posted this data as an article, and labelled it, "California kindergatens are fertile breeding grounds for some of the nastiest diseases circulating in the world today!"

I'm beginning to suspect that it'll take a genuine tragedy to stop Jenny and her brand of idiots. In the meantime, her kill count keeps rising... and, for every additional unvaccinated child, the scope of the inevitable tragedy, when it comes, grows.

As I said, I'm pretty thoroughly scared by this.

Dan Marino Autube Response

2009-09-02T14:12:00.000-04:00

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.

Another Example of Bias in Science and the News

2009-09-02T13:49:00.002-04:00

I'll also have to admit that neuroscience isn't my area of expertise... or even an area of particular interest for me (beyond the subfield of cognitive neuroscience, which is of interest to me to the extent to which it provides useful evidence for theories in cognitive psychology). This isn't anything against the field -- I just don't personally enjoy reading these studies nearly as much as I do other sorts.

That taken care of, a recent MSNBC piece contains the following quote from an autism researcher whose name they didn't spell (but I very strongly suspect, based on my knowledge of autism researchers, the pronunciation given to the researcher's name, and his stated institutional affiliation to be Dr. Eric Courchesne -- please correct me if I'm mistaken):

We discovered that at birth the brain is near-normal in size, but by about twelve months of age the brain has grown too large, too fast, which suggests that mechanisms that regulate how the brain grows have been derailed in this disorder.

I pulled this specific quote because it's an excellent demonstration of a peculiar form of normocentric bias that pervades much of the autism world. There are a number of other problems with it, but for now I just want to focus on that one. It's worth noting that there are a number of other spectacularly problematic quotes in the piece, however.

I was going to go on a rather long rant about the subject, but then I realized that someone else had already done a pretty spectacular job of highlighting the problem. In essence, he's assuming that there's a single, "good" course of brain development (the one that most children show) and that all deviations from this course must be harmful. This is not the case.

Another case of "abnormal" growth that I can point to is in the hippocampi of London taxi drivers, a direct result (as far as we can tell) of the fact that they have to memorize a simply absurd amount of information regarding the layout of a pretty large and chaotic city... unless they navigate by GPS, and those that do don't show the "abnormal" growth I'm talking about.

Given the known functions of the hippocampus, this shouldn't be too surprising.

So I won't deny that the patterns of growth the doctor is talking about are interesting. I do think, however, that his interpretation is completely inaccurate and highly biased. If anything, I think the reports he's citing are evidence in support of the EPF model of autism... but we'd need further research to get something directly citable (without a lot of interpretation and discussion) as evidence in a primary paper on the subject.

Modelling Coolness

2009-08-26T11:58:00.003-04:00

Google recently did a page on using its SketchUp software in teaching autistic children. This is obviously not an "autism intervention", but is still a pretty cool toy... and, frankly, if it's easier for a child to use than an alternate method such as drawing a floorplan (which, apparently, it is for at least some children), then I say to go with what works.

SketchUp does look pretty cool, to be honest, and looks far better than some of the 3D modelling software I played with when I was a kid. Given the fact that I'm comparing a modern product of a major corporation to 1990s cheapware, this shouldn't be much of a surprise. Beyond the obvious increase in featureset, however, it looks like they've done a great deal in terms of ease of use. Way to go, Google!

I'm not too sure what to think of "Project Spectrum" (some of the lesson plans are better than others), though I do have one major comment on the intro.

Guys, would you please stop reifying autism already? Autism is not something that "affects individuals' communication skills and ability to deal with social interactions". Autism is a description of, among other things, people's communication skills and ability to deal with social interactions. Gyah.

On the Media

2009-08-25T14:41:00.001-04:00

As I noted in a previous post, I had my wisdom teeth out recently. I'm only starting to come out of the narcotic haze of the painkillers now (and will need to take another shortly), so my plans to start job-searching will have to wait. No, this isn't because of the pain -- it's because of how badly the painkillers effect me. Still, while I have a few lucid moments, I might as well comment on all of the stuff I've missed.

For one thing, I haven't been able to read any peer-reviewed journal articles. This... really, really sucks, from my perspective. More than any of the other effects of the hydrocodone they gave me, the fact that it pretty much destroys my attention span to the point that I can't read research articles drives me ready to tear my hair out.

This does, however, present a somewhat unique opportunity as I go over the news I've missed. This entry is going to be of a special format -- as I catch up, I'm going to post a brief summary of each article dealing with autism, a link, and a comment on just how offensive the media coverage of the story was.

To start with, take this piece, whose main offence was to equate all developmental disabilities. As this is supposed to be reporting on abuse of persons with developmental disabilities... this really shouldn't be the case. The nature of the disability in question should be at least stated. It is insulting to spread the stereotype that all persons with developmental disabilities are "mentally incompetent".

Any broad category of disabilities covers a huge range of issues. The term "physical disability", for instance, can cover anything from a trick knee to quadriplegia. "Developmental disability" is only different in that it covers a greater variety of issues... many of which are only issues because of the lack of available societal supports.

On the other hand, the article does a good bit to highlight issues of abuse. I have mixed feelings about it.

Next, we have this piece, dealing with an Aspie contestant in a talent show, deserves particular mention for being exceedingly odious. For one thing, the entire piece is based not on what Mr. James (the contestant in question) can or can't do, but rather on a judge's prediction on whether or not he can cope with the stress of being on the show.

The language of the article itself, however, is so blatantly offensive it's absurd. Even the title is offensive -- "Asperger's sufferer will not..." indeed! The first line of the article repeats the theme: "The X Factor contestant Scott James, who suffers from Asperger's syndrome..."

Excuse me. Asperger's is a description of the way your brain's wired. You don't suffer from Asperger's (or autism) any more than you suffer from liking classical music (and, in fact, it's harder to separate "Asperger's" from the rest of you than it is said like). Saying that someone "suffers from" Asperger's (or autism, or...) is around as offensive as saying that someone "suffers from being Jewish".

Next, a local piece on the whole sign fiasco. Decent coverage... except I'm going to need to withdraw my earlier declaration of respect for Ms. Wallace. When the heck will these people realize that the cancer thing is even more offensive?

Then there's this piece which deals with an Aspie surfer... and deliberately calls up the whole lack-of-empathy stereotype. Enough said.

Next, this bit on the murder of a twelve-year-old autistic boy. This article actually manages to avoid being offensive. Way to go, UPI! Of course, the incident itself is another story, but at least the coverage wasn't bad.

This article on a summer camp for autistic kids actually looks pretty cool. Beyond its continuous reification of autism and oversimplification of the research, the article actually makes the program look decent... which should not be taken as an endorsement. All that really means is that the program isn't setting off any red flags based on this article.

This article covers the opening of a new school in a spectacularly uninformative fashion. Kudos to the author, though, for its opening line.

An article in the National Post details the (hopeful) end of a truly obscene saga of an autistic Canadian who got trapped in Kenya. Nothing too bad about the article, but, again, the story itself is pretty offensive.

According to this piece, an autistic child whose school was attempting to deny him the ability to bring his service dog with him won a victory in court. I do, however, feel sorry for Ms. Crook. While it involves skipping out of the chronology of the articles, it's worth noting that there's a considerably more offensive follow-up story by ABC here.

Really, when will the media learn that Autism Speaks doesn't speak for autistics?

Anyway, next up is a Salt Lake Tribune article on a couple who's been charged with abusing thier autistic son. Again, good coverage for a nasty incident.

This piece tries to hold out an autistic nineteen-year-old who recently became an Eagle Scout as an inspiration. At least it's better than most such attempts... which isn't saying much.

Finally, the Onion's latest effort in mocking Obama concluded with a pretty damn offensive bit about Biden and Asperger's.

Well... that's a few days in the news for me. No, this wasn't really atypical.

P.S.: It looks like the Psycho Donuts fiasco has come to an end. Cool.

Edit: It may just be the painkillers kicking in, but I find this incredibly amusing for some reason.

On Finding Things Out From Unlikely Sources

2009-08-23T20:05:00.006-04:00

Not all of the blogs I follow are run by people who I agree with. In fact, some of them have downright offensive content.

Beyond the obvious reasons (e.g. keeping an eye on one's enemies, being aware of arguments against positions I hold so I can prepare for when they're inevitably used against me), I also occasionally find out information of interest from them. By this, I don't mean information of interest about what they're up to (I'd file that under the category of "the obvious reasons"), but rather information about the neurodiversity movement.

You see, they're usually doing the same thing that I am -- namely, keeping an eye on the other side of the "debates" (kinda hard to call it a debate when the "other side" doesn't regard you as capable of rational argument, but I digress...). The fact that they report it from a position which is biased against us doesn't change the fact that they do report on said news.

This comes in handy on occasion. For a variety of reasons, I sometimes miss information that really would have been of interest to me... or that I'd find comment-worthy.

I was rather firmly reminded of this yesterday when I came across some information at one of them.

I won't link to the post... or to the blog in question. I don't want to raise that... person's... Google ranking any. I will remark that his hate-filled invective has managed to generate a response blog which typically comments on the blog's inane deluded ramblings... which often somehow manage to be more offensive than Encyclopedia Dramatica's entry on the word "offended".

No, I won't link directly to that, either. If you are morbidly curious enough to want to see a page which actively attempts to be the most offensive thing on the Internet, please don't say I didn't warn you. I probably wouldn't even bring it up if I wasn't under the influence of narcotics, but, in my current mental state, I literally can't think of a better way to convey just how offensive That Person's hate speech is.

In the midst of one of his hate-filled rants, however, he managed to mention something genuinely interesting, something that I wasn't aware of.

You see, I'm almost certainly not going to be able to attend this year's AutCom conference. It's a simple matter of funding -- I blew most of the money that I could have used to go there by going to Autreat instead. As I knew I wouldn't be able to go, I'm afraid that I didn't check out the agenda for the AutCom conference in as much detail as I should have.

Simply put, That Person mentioned (in as offensive a way as possible) that Amanda Baggs would be re-presenting her talk from Autreat at AutCom. This drew me short for a moment -- to say that Amanda's talk had been good would be a major understatement.

I checked over the agenda to confirm... and there it is. I don't know if Amanda will be representing her talk exactly as she gave it at Autreat or if she's revised and/or made additions. Either way, I can't reccommend it enough.

And no, Amanda's isn't the only breakout session which appears to be a rehash of an Autreat presentation. Right now, I'm really wishing I could go to AutCom.

Who knows, I may be able to find a way. It'll just be extremely tricky.

And this entry took me well over twenty four hours to write. Gyah, the painkillers are effecting my functioning level...

On Timing

2009-08-21T08:52:00.001-04:00

I finished my program this week. I suppose I'll need a new sub-heading for my blog, even though I'm going to start applying to Ph.D. programs soon.

For now, however, I'm going to just kick back and relax... and get my wisdom teeth out (an hour or two from now). It was pretty hard to work an appointment for that in around my practicum schedule.

And I'm going to start job-searching (for supervised fieldwork) on either Monday or Tuesday, depending on how much pain I'm in. Either way... new sub-heading, here I come...

Adults on the Autism Spectrum Leave the Nest: Achieving Supported Independence

2009-08-18T16:00:00.000-04:00

From the very beginning of this book, I had mixed feelings about it. The author actually has a pretty good understanding of and background in disabilities and writes from that perspective. On the other hand, the author's understanding of autism is pretty thoroughly flawed. That said, however, the program talked about in the book was put together through emperical eclecticism (i.e. "do what works") and that has somewhat compensated for some, if not all, consequences of the author's lack of understanding.

Or, to put it another way, her heart's in the right place. This is surprisingly common when dealing with the clinical community.

This is also ironic given that one of case studies in the introduction was specifically selected for the purpose of illustrating the harm that misunderstanding a disability can cause. This case study is decidedly not the only one contained within the book which illustrates this problem. The author's selection of which case study to select to illustrate the problems which can arise when a disability is misunderstood is, in itself, a case study in the ways in which the author misunderstands autism.

This is not to say that the case study she selected -- that of a client who had multiple misunderstandings and encounters which, among other things, led to him being placed in "residential remedial care for boys with sexual deviancies of all kinds" (p. 22) and eventually being sexually exploited -- doesn't illustrate some of the problems that misunderstandings can cause. It's just that another of her selected case studies -- that of a girl whose parents misunderstood the nature of her disability and considerably underestimated her potential -- is far better as an illustration of this... even though the author selected it because it "typifies the newer practice, taking advantage of whatever help is available" (p. 15).

I'm also not trying to say that she's uneducated. The opposite is the case. She just misunderstands autism in the same ways that much of the clinical establishment does... which makes sense, given that she's getting her information from said clinical establishment.

She also tries to view autism from the perspective of a conceptual framework intended to handle injury- or illness-induced brain damage. To paraphrase Michelle Dawson, she likes to view autistic brains as broken versions of non-autistic brains despite the fact that this view of autism is not what the evidence supports.

I won't get into the construct validity of the book's description of executive functioning. I won't get into the issues associated with trying to teach autistics NT-style executive functioning skills and why I'm not surprised that such efforts often hit major roadblocks (for crying out loud, autistic people need autistic executive functioning skills!). I'm not even going to get into the various problems I noticed in the program the book details (most of which follow from the flawed understanding of autism it's based on).

I will, however, note that the program appears to have done some actual good... and is certainly a step in the right direction (i.e. it's better than full-out institutionalization and the situations many of the clients came from). I am, however, unaware of any peer-reviewed outcome study and the book only provides case studies as evidence.

A couple of other points:

Chapter 1 ("What Are Neurodivelopmental Disabilities?")... gyah! Overgeneralization based on a biased sample, much? I know you're working from your experience, lady, but you should have learned about sampling bias well before you got your Ph.D.! And, to boot, that's not the only problem with the chapter -- just the one which stands out the most.
The book writes off autistics who do not recieve early intervention. This is particularly interesting given the fact that one of the case studies is of a man who didn't recieve such intervention and who managed to hold a job for thirty years.
The continuous buy-in to the idea of adult autistics as physically grown-up "large children" is just plain offensive.

So, in short, this is basically a manual for a program that appears to be better than most institutions. That's not a bar that's terribly hard to reach... and it's lacking evidence on several critical elements that would determine whether or not it qualifies as an institution itself. I very much would not reccommend this book to the parents of an autistic child.

A clinician trying to design a program might find it interesting, though -- I'd just have to caution them that the program in question had more than its fair share of flaws and insure that they interpreted it through an appropriate framework.

Of course, I may have to revise my opinion in the future. One book, written by one of the people who designed the program, is hardly enough evidence to base a final judgement on. If I find something out about the program that isn't in the book (or that I missed during my read-through -- I did, admittedly, skim some sections), who knows what my opinion might change to?

Billboard Fiasco

2009-08-17T19:57:00.000-04:00

Perhaps understandably, I have been in and out of touch a lot as of late. Last weekend, I unexpectedly found myself cut off from the 'net for... well, pretty much the entire weekend. I had 158 e-mails in my secondary e-mail account (which I don't use for mailing lists) when I got back. Newsfeeds and the like? Didn't get 'em. I'm still catching up on blog posts.

As a result, I managed to miss a pretty interesting event, something that's truly unusual in the disabilities field.

It started out pretty typically: York County, PA's Autism Society decided to try some truly uncreative advertising. Upon noticing, a number of autistic (and non-autistic) people promptly complained. This included a letter from the ASAN.

That's where things got strange.

In only a few hours, the president of York's ASA chapter wrote back... and apologized. The ad campaign was promptly withdrawn.

Wow... an autism organization actually taking responsibility for a mistake and apologizing to the autistic people they offended? Who'd've thought?

I'd never heard of Ms. Wallace (the president of ASA-York) before this. She's now earned a good bit of respect from me. Way to go!

On Shock

2009-08-12T23:08:00.000-04:00

I'm mostly caught up on the newsfeeds and blogs that I follow. This is after effectively missing three days, and dedicating most of two days specifically to catching up.

Somehow, I think I try to follow too much.

Writing on the articles I've been planning to review will, however, have to wait... as I literally can't find my copies of them. I'd print out replacements, but my printer's broken, and I find it difficult to review an article while needing to switch between windows to read it and write about it.

While looking, however, I found my printed copy of what is easily the worst article I've ever read. In other words, it's the closest thing I have to a prototype of "bad science" in the peer-reviewed literature.

And no, papers in Medical Hypotheses and the like don't count. They're not peer-reviewed.

Anyway, that paper is a "wonderful" little piece (notice the sarcasm) by van Oorsow, Israel, von Heyn, & Duker (2008) entitled "Side effects of contingent shock treatment".

I originally came across this paper around a year ago. I summarily ignored it.

I came back to it, however, earlier this (calendar) year. As part of one of my classes, I was required to do a brief review of the literature on one topic and summarize the methodology of a few papers on it. I chose contingent electrical stimulation -- not because I liked the topic, but rather because I viewed it as an excuse to familiarize myself with the literature on it... and thereby improve my ability to counter that literature.

My paper's section on this steaming pile of crap reads:

Van Oorsouw et al. (2008) attempted to evaluate the side effects of the use of contingent shock to treat the "severe problem behaviors" (p. 513) of nine students at the Judge Rotenberg Center (JRC) in Canton, MA who showed "severe forms of SIB and aggressive behavior" (p. 514). The shock devices used were JRC's graduated electronic decelerator model one (GED-1).
A nonconcurrent quasi-multiple baseline across participants design was used. The length of baseline in each subject was the difference in time between their arrival to JRC and court approval for the use of contingent skin shock. During baseline conditions, DRO procedures, a token system, a response cost system, and contingent restraint were in effect. These procedures were also in effect during treatment conditions (van Oorsow et al., 2008).
During treatment conditions, skin shock was delivered contingent on SIB and/or aggressive behaviors. Subsequently, a staff person or teacher who administered the shock would explain the contingency and prompt the student to continue what they were doing prior to the shock (if needed). Following this, the electrodes would be rotated slightly and the time of administration would be recorded (van Oorsow et al.,
2008).
Four categories of target behaviors were also recorded: positive verbal and nonverbal utterances (PVNU), negative verbal and nonverbal utterances (NVNU), socially appropriate behaviors (SAB), and off task behaviors (OT). Van Oorsow et al. (2008) defined these behavior categories only by example.
Data was recorded by 10s partial interval recording based on 10-min videotapes of randomly chosen points of time in the participants' day. All recordings were selected so that teachers and staff were not applying reinforcing contingencies within them. Average IOA was 95.48%. Data was analyzed by visual analysis by seven clinicians. Mean agreement for change across clinicians was 78% for PVNU graphs, 92% for NVNU graphs, 91% for SAB graphs, and 89% for OT graphs. Agreement ranged from 57% to 100%. All participants were evaluated as having either improved or not changed in each category. Group analyses were not conducted (van Oorsow et al.,
2008).
Data on one participant ("S.S.") was not taken in regard to SAB because she had "severe mental retardation, and who, by definition, failed to show any form of SAB" (van Oorsow et al., 2008, p. 522). Despite this assertion, S.S. is listed as a girl with moderate mental retardation and autism within the study's demographic table. Van Oorsow et al. do not provide support for this assertion.
Additionally, this design is not appropriate for a full analysis of side effects, as it only allowed for the possibility of four specific negative effects (i.e. lowered PVNU, increased NVNU, reduced SAB, and increased OT) and only included nine participants. As it is common practice to report effects that occur in less than one percent of the treatment population as side effects of a treatment and to take them into account when planning a course of treatment, the number of participants was too small to allow a comprehensive evaluation of side effects. Additionally, it is common practice to take into account a wide variety of effects, including those that are only directly available as private events (c.f. Eli Lilly and Company, 2006). As such, the study fails to provide sufficient support for van Oorsouw et al.'s (2008) assertion that "the objection that CS should not be used due to associated negative side effects, fails to be inconsistent with the results of this study" (p. 523).

This, of course, is only a tiny fraction of the problems with the paper. For one thing, I have reason to suspect that they misrepresented their procedure in the article. A careful reading of the article and comparison to publically available documentation will indicate that standard procedure at JRC involves a change of setting and activity schedule upon receipt of court approval for the use of shock, something that the article did not report. Assuming that this was the case... well, let's just say that the ethics of their procedure were even shittier than my summary suggests.

And, of course, since it was a purely methodological paper, I didn't even begin to directly touch on the ethical problems with what they did. Suffice it to say that they were many and manifold.

For instance, one of the subjects was an eleven year old boy whose only diagnoses was oppositional defiant disorder and "mild" mental retardation. Another was a nineteen-year-old woman who had a diagnosis of post-traumatic stress disorder.

Words fail me here. The horses and deer are prancing.

Oh, and there are the usual randomization issues, selectivity bias... yeah, all of those. Poor, poor study on so many levels it's not funny.

References:

Eli Lilly and Company (2006). Prescribing Information (Prozac Label, 2006). Retrieved February 28, 2009, from http://www.fda.gov/cder/foi/label/2006/018936s076lbl.pdf

van Oorsouw, W., Israel, M., von Heyn, R., & Duker, P. (2008). Side effects of contingent shock treatment. Research in Developmental Disabilities, 29, 513-523.

Blatant Bias

2009-08-07T21:51:00.000-04:00

A quote in Edelson, 2006, which highlights a pretty blatant anti-autistic bias in the existing literature:

Other early researchers agreed on this latter point, including Rutter (1966b), who stated that many commonly used measures of intelligence are “usually unsuitable” (p. 91) for children with autism given their reliance on verbal subtests. However, in another chapter in the same book, Rutter (1966a) reported that 71% of children with autism in his sample had MR, a statistic obtained in a study that utilized the Wechsler Intelligence Scale for Children, a commonly used measure of intelligence with many verbal subtests (see Rutter & Lockyer, 1967, which is a report of the same study). Thus, despite the recognition that certain methods of intelligence determination were inappropriate for children with autism, they were still used; and data from these studies were then cited by subsequent authors. (pp. 72-73, emphasis in original)

Of course, that's only one of many types of bias highlighted in Edelson's paper. It's a pretty good read.

On Grief

2009-08-07T16:24:00.000-04:00

My father died this morning.

This is not a comfortable thing to write. It took me nearly six hours from when I left the hospital to get to the point where I could even start. Although you can't see from reading this, the first sentence of this entry took me several minutes. I stopped writing and simply cried for a while after the first few words.

Dad was in the ICU of the Cleveland Clinic, Florida and was scheduled for a surgery to repair what I suspect was a renal aneurysm (and why is it that people think I don't understand medical terminology? I'd much rather if they didn't dumb things down "for me"; so much information is lost when they do...). The operation would have been today.

My father's heart was already giving out on him. I knew that it was just a matter of time.

That didn't prepare me for the sight of my father's corpse.

I won't cover what that was like. There are some horrors that words fail to adequately express.

My mother was there when it happened. I wasn't -- I was at home, asleep. I was planning to visit again after my practicum today so that I could be there for him before the operation.

For obvious reasons, neither the operation nor today's practicum will be happening. I wish I'd spent more time with him yesterday... but it's too late to do anything about that.

I also wish I hadn't been sick last week. In a true perversion of the sort that pops up from time to time, I managed to catch a throat bug from one of the kids at my practicum and was sick throughout most of the week. I didn't visit until yesterday, when I was informed that I was no longer contagious. At the time, I told Mom that I'd never be able to forgive myself if I gave him something and that made him worse. As it turns out, I shouldn't have worried.

My last words to him were that I was going to class, and that I'd see him tomorrow (well, today, strictly speaking). I wish I hadn't said them.

I think that everyone has regrets at times like these. I'm no exception. I just wish they didn't hurt so much.

Then again, I know why they hurt so much... and wouldn't change those reasons for the world.

I won't pretend that my father was perfect. To do so would be to insult his memory. I won't -- can't -- do that. He was as human as anyone else. He was stubborn, often cantankerous, and frequently forgetful... among other things.

I loved him. It's difficult to express how much it hurts me to use the past tense in that statement. Part of me is still in denial.

It's tempting to react with anger, to lash out at something -- anything -- for my loss. I know better. The medical personnel at the hospital did everything they could for him.

It just wasn't enough. By all accounts, they'd warned him that sitting up was dangerous for him in his current condition because it risked bursting the aneurysm. While I'll probably never know for sure (there won't be an autopsy), it looks like that's precisely what happened.

And, according to Blogger's timestamps and my system clock, I've now spent more than five hours writing this. It's been somewhat over eleven since the events I describe above. Not all of this time has been spent trying to type this up, but the vast majority has. It's just that difficult.

I won't be blogging much in the next few days. I won't even have much access to the Internet. Dad wanted to be buried up in his hometown in Andrews, South Carolina.

We'll be granting his request. We even managed to secure a plot next to his father's grave for him.

Emotional turmoil aside, I suppose I've been taking things about as well as could be expected. I cried, of course. I joined in with my family's prayers over Dad's corpse even though I'm not exactly religious. I came home and cried myself to sleep... and wasn't really feeling that much better when I woke up four hours later.

I'm grateful for the way my mom's taking charge of things. I've had to run some errands and take care of some things related to the arraingements we're making, but the lack of demands has let me work through things somewhat.

Writing this blog entry has helped, too.

I've also broken out what I semi-jokingly refer to as my "comfort research". By this, I mean the set of articles I have (but haven't read yet) that I'm fairly confident will be easy (emotionally speaking) to read through and will also be enjoyable and informative.

Or, to put it another way, I ransacked Michelle Dawson's and Morton Gernsbacher's CVs, grabbing every yet-unread article and book chapter from them that I could. I don't have everything (yet -- gotta love the ILL system), but good, unbiased research is, for me, extremely effective stress relief and a source of great comfort (especially when the articles aren't biased in their interpretation of findings!)... the main problem being that rereading an article is of much lesser effectiveness. I've also found a few articles by Meredyth Edelson that look quite promising. I'm not quite sure what I'll do once I've exhausted them, but I'll make do somehow.

I suppose this may seem to be a fairly unique way to deal with this sort of grief if you look at it from a superficial standpoint. The truth of the matter, however, is that it has a lot in common with more "normal" coping strategies. Many people, when grieving, seek comfort from a favored activity, a favored location, a favored food... the list goes on and on. I will admit that the specifics are unusual in my case, but that's about it.

The question becomes one of whether or not an outsider -- someone who doesn't know me or understand autism -- would understand the reaction... and what they'd make of it.

In any case, it's now been around thirteen hours since Dad died. It's been more than seven since I started writing this. I'm tired... and, frankly, I have arraingements to make.

I was planning a couple of blog entries for the next few days, reviews of a pair of articles which I think are pretty significant for the autistic community (even though one of them isn't on autism). They will have to wait. Hopefully, I'll be able to get to them next week.

On Experience and Knowledge

2009-08-06T00:32:00.000-04:00

There are times when I believe I've seen entirely too much of the evil and suffering in the world. Over the course of my life, I've seen children abused by their parents (sometimes in truly horrific manners), I've seen casual stupidity on levels that truly boggle the mind, and I've seen people totally undeserving of what happened to them suffer in spectacularly god-awful ways.

Of course, my instinctive reaction to this sort of thing is to try to understand it, so that may help account for the amount of horrible stuff I've seen. I'm not quite sure how -- it's not like I spent my childhood hanging around hospital burn wards (althout I am quite acquainted with what you see in them, thank you very much) -- but this reaction has certainly been influential in the course my life has taken.

I hate to see evil at work. Human stupidity frustrates the heck out of me. Seeing good people suffer is something that I never enjoy (and something that makes me want to help out in any way I can).

Despite this, however, I can't help but feel that I'm becoming a bit jaded at times. Hell, I barely even reacted when I first saw a certain work of a hate group that I won't dignify by mentioning by name here.

My reaction to a recent news story about the murder of an autistic child was a perfect case in point. When I read it, I found myself shocked.

No, it wasn't at the crime itself. Frankly, it takes more than finding out that some woman (appears to have -- I haven't evaluated the evidence in this case myself) burned her autistic child to death for financial gain to shock me. There have been cases where mothers did the same thing to their neurotypical children for lesser reason (and no, this is not intended as a statement that neurotypical children are "worth more" -- it's intended as a depressingly realistic acknowledgement that many people, including mothers of autistic children, percieve things that way).

It was the punishment meted out -- which is very much out of line with the usual pattern in these cases -- which did it. Perhaps attitudes are changing... or perhaps I'm just being overly optimistic. I hope it's the former.

And yes, I condemn this mother's actions in the strongest terms possible. There is no excuse whatsoever for the premeditated murder of a child.

I just wish it happened less often.