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.

blithe assumptions

So, I did a little perusing of the personality disorders section of the DSM, and I was amazed by some of the language that I found there. Linehan's article ought to have tipped me off, but it wasn't just the description of borderline personality disorder that used pejorative language and descriptions that were "confound[ed] [by] motivational hypothes[es]" (p. 14). Here's a sampling (all italics mine):

Histrionic Personality Disorder-

"they commandeer the role of 'the life of the party'"

"their emotions often seem to be turned on and off too quickly to be deeply felt"

"they often act out a role (e.g., "victim" or "princess") in their relationships"

"seek to control their partner through emotional manipulation or seductiveness"

"at increased risk for suicidal gestures and threats to get attention and coerce better caregiving"

Narcissistic Personality Disorder--

"they may blithely assume that others attribute the same value to their efforts..."

"sense of entitlement"

"contemptuous and impatient"

"Arrogant, haughty behaviors characterize these individuals. They often display snobbish, disdainful, or patronizing attitudes"

"very sensitive to "injury" from criticism or defeat"

"overweening ambition"

"[differs from] Histrionic, Antisocial, and Borderline Personality Disorders, whose interactive styles are respectively coquettish, callous, and needy..."

Obsessive-Compulsive Personality Disorder

"oblivious to the fact that other people tend to become very annoyed"

"stubbornly and unreasonably insist that everything be done their way"

"Individuals with this disorder may be miserly and stingy"

The language used to describe these individuals is certainly not scientific or objective; rather, it's the kind of subjective, emotional language you might use to describe anyone you didn't like. The diagnostic criteria seem more to be criteria for unlikeableness (if that's even a word) than impaired functioning and clinically significant distress. If this is the best we can do, it's no wonder a large portion of the world describes us as "quacks" and "shrinks." No meaningful therapeutic progress can be made if the clinician conceives of their client in such pejorative terms and ascribes motives to their behaviors (i.e., rapid fluctuations in expressed emotion) that may, in fact, have more to do with our cultural "common sense" about what such behaviors mean (i.e., "turned on and off too quickly to be felt"), and less about their actual origin and function (perhaps limbic dysregulation?).

Frankly, this section of the DSM seems like a holdover from the dark ages, and I'm horrified by the pseudoscientific veneer it lays over highly subjective diagnostic categories. After all, how is a clinician to operationally define, say, "fishing for compliments" (a behavior described in both the Histrionic and the Narcissistic sections)? Or, taking a look at the actual criteria , how is one to pinpoint which emotions are "shallow" (Histrionic)? How can different clinicians all arrive at the same definition of what is "theatrical" (Histrionic) or "haughty" (Narcissistic) or "perfectionis[tic]" (Obsessive-Compulsive)?

Furthermore, is a category of personality disorders even helpful? Defining these diagnoses as disorders of the personality suggests disorders of intrinsic, relatively stable traits; it implies resistance to treatment. If a clinician diagnoses a client as having avoidant personality disorder, it seems that there's little that can be done--her very personality is disordered! Yet give the same individual a label of social phobia, and it seems, instead, that change can be effected--the phobia can be tackled.

So, in all, this whole category has me steamed.

a little too close to home

Part 1: Anxiety and Parenting Practice

I got hit with a double whammy: a mother AND a father with an anxiety disorder. This had interesting consequences for me, because I had the definite genetic input, but I also had the environmental factors beating me over the head constantly. My mom still sends me articles clipped from the local newspaper about women being raped and murdered, along with advice about how not to have the same thing happen to me. Just last week she sent me a little internet film about kitchen grease fires, narrated by a woman who had had her face burned off: an awesome thing to find in one's inbox first thing in the morning. Don't get me wrong, I love my family, but we're also a nice little self-reinforcing kettle of neuroticism.

When you grow up in an anxious family, you get the genetic predisposition, but you also get the constant message that the world is Out to Get You (see also maternal lecture #347, "There Is Not a Man in the World Who Doesn't Want to Dismember You and Shove You in the Trunk of His Car"). I was consequently interested in Minecka & Zinbarg's suggestions (2006) for reducing the likelihood that children of anxious parents would grow up to have anxiety disorders themselves.

While I thought their suggestions were sensible, I felt that they would be almost impossible to implement without managing the parent's anxiety first. Particularly, Minecka & Zinbarg suggest that children be provided with experiences that "facilitate the development of mastery and a nonavoidant coping style" (p. 23). One might also infer from evidence cited earlier in the article that they might suggest that parents redirect or refrain from discussion of possibly dangerous or threatening events, as this may reinforce children's avoidant responding. These are all excellent, evidence-based suggestions; however, I wonder if Minecka & Zinbarg considered just how difficult it may be to get a parent with an anxiety disorder to avoid verbal instruction and rumination about threat with their children, and furthermore, to allow the child sufficient control over their choices and environment to develop a sense of mastery. All parents worry about the welfare of their children, but anxious parents may be more likely than others to experience uncontrollable worry leading to a restriction of their child's environment. This is a kind of avoidance-by-proxy, in which the parent prevents the child from engaging in more independent behaviors that cause the parent worry. Subsequently, the child both learns the parent's fears vicariously and loses the opportunity to engage in behaviors that would instill a sense of control--and immunize them against vicarious learning of the parent's fears and avoidant style. Therefore, I see addressing the parent's anxieties and fears as absolutely necessary to the implementation of prophylactic childrearing practices.

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Part 2: The Problem with "Pathology"

I went to see Autism: The Musical and afterwards there was a Q & A session. One of the panelists was a 12-yr-old boy with autism. The moderator asked him, "what does it feel like to have autism?" The boy responded, "I never know how to answer that. It would be like asking someone who doesn't have autism, 'What's it like to not have autism?' A person with autism can't tell you what it's like to not have autism and a person without autism can't tell you what it's like to have autism. It's part of me, I don't know what it's like."

That's the problem with talking about these conditions exclusively as pathology. My anxiety is part of me and it would be silly even to consider who I would be without it. I want to manage it, so that I can function, but I don't actually want to erase it. It's helpful to a certain extent--it's part of the reason that I'm so perfectionistic about my work, and I like that. I like focusing on details and making my work beautiful, whether it's a knitted lace shawl or a sonnet or a term paper. That's the flip side of my anxiety. I don't want to be "cured." I don't want some tumor excised. I like who I am. It doesn't really feel like a disorder as much as a complex and integral part of my make-up, some parts of which I want to dampen and some parts of which I want to highlight. Lexapro helps me do that to a certain extent, but so does choosing environments in which I know I'm going to function better and avoiding environments (like big, loud, crowded parties) in which I know I'm going to function worse. And so does gently putting myself into situations within my proximal zone of development (like, say, calling up someone I don't know and asking them to let me come observe at their facility) and letting myself find out that I didn't die. And so does taking time to meditate and go hiking. We shouldn't focus so much on eliminating the disorder as on shaping the life.

So there.