On Diagnosis

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Hopefully, I did not just "try".

On Wakefield and Fraud

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

I was aware that a medical society tribunal in the UK had found problems with the MMR study but I was unaware that a court of law, or governing medical society tribunal, had found Wakefield guilty of the serious offence of fraud.

If anyone knows which court of law, or governing medical society tribunal, found Dr. Wakefield guilty of fraud could you post a link to this site please?

The "medical society tribunal" Doherty refers to was the British General Medical Council, (or "GMC"; see their website here). They are hardly a mere "medical society tribunal" -- they're a governing body established by legislative action. They have a direct government mandate... and the legal authority to control who can and cannot practice medicine in the UK.

I suppose you could call them a "governing medical society tribunal", per Mr. Doherty's instructions. I would not: they're a regulatory body tasked with a judicial function. They are not part of any medical society (although the memberships certainly overlap!).

In its sanction against Dr. Wakefield, the GMC found (among other things):

The children described in the Lancet paper were admitted for research purposes under a programme of investigations for Project 172-96 and the purpose of the project was to investigate the postulated new syndrome following vaccination. In the paper, Dr Wakefield failed to state that this was the case and the Panel concluded that this was dishonest, in that his failure was intentional and that it was irresponsible. His conduct resulted in a misleading description of the patient population. This was a matter which was fundamental to the understanding of the study and the terms under which it was conducted.

In addition to the failure to state that the children were part of a project to investigate the new syndrome, the Lancet paper also stated that the children had been consecutively referred to the Department of Paediatric Gastroenterology with a history of a pervasive developmental disorder and intestinal symptoms. This description implied that the children had been referred to the gastroenterology department with gastrointestinal symptoms and that the investigators had played no active part in that referral process. In fact, the Panel has found that some of the children were not routine referrals to the gastroenterology department in that either they lacked a reported history of gastrointestinal symptoms and/or that Dr Wakefield had been actively involved in the process of referral. In those circumstances the Panel concluded that the description of the referral process was irresponsible, misleading and in breach of Dr Wakefield’s duty as a senior author.

The statement in the Lancet paper that investigations reported in it were approved by the Royal Free Hospital Ethics Committee when they were not, was irresponsible.

In other words, the GMC found that Wakefield lied repeatedly in the Lancet paper. Moreover, he concealed financial interests in the results being what they were:

Regarding the issues of conflicts of interest, Dr Wakefield did not disclose matters which could legitimately give rise to a perception of a conflict of interest. He failed to disclose to the Ethics Committee and to the Editor of the Lancet his involvement in the MMR litigation and his receipt of funding from the Legal Aid Board. He also failed to disclose to the Editor of the Lancet his involvement as the inventor of a patent relating to a new vaccine for the elimination of the measles virus (Transfer Factor) which he also claimed in the patent application, would be a treatment for inflammatory bowel disease (IBD).

In summary of their findings, the GMC wrote:

The Panel made findings of transgressions in many aspects of Dr Wakefield’s research. It made findings of dishonesty in regard to his writing of a scientific paper that had major implications for public health, and with regard to his subsequent representations to a scientific body and to colleagues. He was dishonest in respect of the LAB funds secured for research as well as being misleading. Furthermore he was in breach of his duty to manage finances as well as to account for funds that he did not need to the donor of those funds. In causing blood samples to be taken from children at a birthday party, he callously disregarded the pain and distress young children might suffer and behaved in a way which brought the profession into disrepute.

As such (among other things):

The Panel concluded that Dr Wakefield’s shortcomings and the aggravating factors in this case including in broad terms the wide-ranging transgressions relating to every aspect of his research; his disregard for the clinical interests of vulnerable patients; his failure to heed the warnings he received in relation to the potential conflicts of interest associated with his Legal Aid Board funding; his failure to disclose the patent; his dishonesty and the compounding of that dishonesty in relation to the drafting of the Lancet paper; and his subsequent representations about it, all played out against a background of research involving such major public health implications, could not be addressed by any conditions on his registration.

In short, Wakefield was found to be a dirty, rotten liar who faked data for publication in The Lancet. In common scientific parlance, they found that the paper was a classic example of academic fraud.

Edit: Kev of LBRB does an excellent analysis of the issue here, focusing less on the legal findings and more on illustrating the fact that Wakefield's paper was fraudulent.

The Bigotry Defense?

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

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

No, I'm not joking.

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

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

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

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

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

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

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

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

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

And then there's Wiznitzer's testimony:

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

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

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

Some Links That May Have Passed the Neurodiversity Community By

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

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

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

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

Part 1/Ross:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

(Lots of credit-seeking.)

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

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

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

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

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

On Mental Disorders, Part One

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

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

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

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

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

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

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

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

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

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

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

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

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

Edit: Corrected an embarassing typo.

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

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"

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 Disease

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

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

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

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

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

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

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

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

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

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

A Bit More on Translational Research

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

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 Psychiatry

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

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

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

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

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

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

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

In Response to Ven Sequenzia

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.