facilitated communication

When I saw facilitated communication (FC) listed as a probably harmful therapy in Lilienfeld's article, I knew I wanted to write about it in my blog. From my "confines [in] the Ivory Tower", I had thought that FC was pretty much dead. There was convincing empirical evidence that (to use Matt's extremely apt analogy), facilitators were essentially using nonverbal children with autism as Ouija boards, and none whatsoever that the "therapy" was actually helping these children to communicate anything other than the facilitators' own messages.

Then I went and saw Autism: The Musical, and was horrified to see FC apparently live and well, as two parents practically wept to hear a fluent message conveyed to them from their previously nonverbal child. A closer look at the child himself revealed him struggling against the facilitator's grasp on his wrist and paying little to no attention to the keyboard. While I do believe that persons with autism may often have better receptive than expressive language abilities, I have little confidence that anyone, autistic or not, could point to the correct letters to spell out a coherent message without actually looking at them.

Later, after the movie, I heard that the parents were apparently continuing to take their son in for regular sessions of FC. I have attached a link to a YouTube video in which you can listen to what I heard: a speech, ostensibly dictated by this child, on the occasion of his bar mitzvah. Slide it up to about the 3:45 mark and listen if you like.



After hearing such an eloquent and moving speech, you will have little trouble understanding what you might not have before: why people get taken in by PHTs, especially ones revolving around developmental disabilities, and why once taken in, they will do almost anything to retain their belief. What parent would want to think that their son did not have that secret gem hiding inside him? Who would want to give up that comfort once they had obtained it?

Lilienfeld lists as the potential harm of FC, "false accusations of child abuse against family members." Obviously, this risk is very serious. But for me, the "indirect" opportunity costs exacted by FC--and by other "fringe" therapies directed at individuals with developmental disabilities--are much more serious than the opportunity costs exacted by ineffective treatments for other classes of disorders. I say this because delaying effective interventions for pervasive developmental disorders has a cumulative cost; developmental achievements build upon each other and failure to achieve some milestone early on may disrupt later progress in a host of other areas. While a client with acrophobia who wastes decades on ineffective treatments may later be able to resolve the issue in 3 hours using an effective strategy, an individual with autism who is denied early effective treatment is unlikely to achieve to their full potential. In the case of treatments for developmental disorders, opportunity costs should not be excluded from the consideration of potential for harm.

the grey behemoth

I have just parted with sixty-three dollars and ninety-nine cents for my copy of the DSM-IV TR. After long acquaintance with its treatment of at least the pervasive developmental disorders, and many trips to the reference sections of various libraries, I am about to consummate my relationship. Soon USPS will be delivering the grey behemoth to my door.

My relationship with the DSM-IV TR has not been without its rocky spots. (Rocky spots, that is, unrelated to the $63.99). I certainly identify with Person's discomfort with studying pathology only along the lines of diagnostic categories. Such an approach may easily distract us from problems inherent in the diagnostic criteria themselves; more importantly, as Widiger & Clark point out, the diagnostic picture (even for a single diagnosis) may vary not just cross-sectionally, but longitudinally, so that we see heterogeneity among the clinical pictures presented by different individuals, as well as variability within the individual.

Diagnostic categories, while necessary and useful (particularly in obtaining needed services for individuals with specific disorders), can also blind one to the individual him- or herself. There are very few conditions (indeed, off the top of my head, I cannot think of any!) that merit a one-size-fits-all approach to intervention. Think of the heterogeneity of the population of individuals diagnosed with autism, for example. The term will help a child gain access to special educational and therapeutic services, but it by no means dictates an optimal path of treatment. There are, without a doubt, some interventions that are more effective than others, but the child's profile should dictate what approach(es) are used: clearly, the child who has no functional communication skills, and who has a history of such severe head-banging that he has broken the windshield of his parents' car, cannot be thought to require the same kind of intervention as the child who has some speech and is not aggressive or self-injurious.

If Dr. Temple Grandin and B., a 55-year old man who cannot speak and spends a great deal of his time trying to strip naked, can both receive the same diagnosis, then it is clear that our current diagnostic categories (at least within the realm of the autism spectrum disorders) are insufficient. I find myself, however, unable to wholeheartedly give myself over to the suggestion that we ought to focus on symptoms alone--not in clinical practice, and not in research design. From a practical standpoint, I find myself unconvinced that we will ever abandon diagnostic categories. Moreover, just as an overly rigid focus on diagnoses can blind us to the individual, too narrow of a focus on symptoms may render us incapable of discovering patterns (the kind of patterns that diagnoses highlight!)--and patterns are the root of scientific progress.

At least in terms of the problem presented by the heterogeneity of individuals with autism, I think that we could make improvements by working to identify behavioral sub-types of autism. I think it would be of great benefit to those who work with children with autism to have a better guide as to what patterns of symptoms within the diagnosis lend themselves to particular therapeutic approaches. While this may seem to place even more weight on categorization, it would force us, in order to identify such subtypes, to consider the variability of the population, and consider each individual as a whole. This, I think, would be a highly beneficial exercise.

Okay, I've talked enough. See you Wednesday.

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P.S.--Great "This American Life" program on the fight to eliminate homosexuality from the DSM. 81 words.