Friday, May 7, 2010

A Recent Assignment

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 19th 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

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.

Tuesday, May 4, 2010

Autism's False Prophets

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.