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.


  1. Offit was interviewed a few months ago on a radio show here in Utah. He did mention the neurodiversity movement and his enthusastic support for it at the end of the interview, which I found kind of nice, because I also wondered about its omission from Autism's False Prophets.


  2. Listening to the interview, he focused on Kathleen Siedel and on neurodiversity.com , with statements of support for several of the neurodiveristy movement's positions. Later, in response to another parent, he discussed the attitudes of supportive parents. The autistic community -- and its role in this -- is still ignored.

  3. Point taken.

    What would you consider appropriate acknowledgment of the autism community? It currently seems to warrant its own book/radio program.

  4. I don't mean the autism community (which is all of the parents, professionals, family members, and so forth) -- I mean the autistic community (which is the community of autistic people). That said -- at least acknowledging the fact that it exists would be nice... as is, Offit's book doesn't even do that.

  5. I think the problem is a lot of people outside of the autistic community are looking more at the individuals in the broader autism community and not really seeing a separate, unified, or easily identifiable group of just people with autism.

  6. Mostly because they are not looking for one -- which is the major flaw in their thinking and their major ethical breach.