This is sure to be a post that gets various readers' dander up, and I apologize in advance. We have a ways to go in the scientific disciplines towards nondiscriminatory and nonoffensive language. When the scientific literature being produced was only being read by other scientists and practioners, there was probably not the same potential to offend with the use of clinical language. With so many parents and autistic individuals themselves now consumers of the scientific literature, it's important to move towards characterizations that take into account a different audience and work to minimize offense and maximize useful information; it's past time to move towards a more sensitive vocabulary. My presentation here of the author's findings in no way reflects the terminology that I would choose to use. (edited this paragraph for clarity)
I think it's an important literature review to provide, though, as it looks at various dubious therapies that were in existence five years ago (by the way, the same time we started the GFCF diet and then stuck to for a very long four years). I've already covered FC, so we know that the literature since 2005 has not all of a sudden changed in favor of FC. I'll be looking at some of the other things Lilienfeld covers in his article in greater detail in the coming months.
Lilienfeld (2005) looks at various treatments for autism (his article also covered dubious therapies for ADHD and conduct disorder) and operationalizes scientifically questionable treatments (SQTs) as "interventions that have been promoted as efficacious in the absence of adequate supporting evidence" (761).
Lilienfeld argues that based on the evidence available (five years ago) that the GFCF diet, B6 and magnesium, dimethylglycine, and Pepcid are scientifically questionable and have no valid studies to back them. He notes that other treatments like those which work to eliminate yeast have not been studied.
Facilitated communication just can't get any love from the evidence-based. Lilienfeld writes: "FC is premised on the notion that autistic children suffer not from an intellectual and affective impairment but from an exclusively motor impairment termed developmental apraxia, which impedes their ability to speak properly.12 Hence, with the aid of a facilitator who guides their hand movements, these children can ostensibly type out complete sentences on a computer keyboard or letter pad. Nevertheless, controlled studies demonstrate overwhelmingly that FC is ineffective and that the resultant communications are a product of inadvertent facilitator control over the child’s hand movements.13,14 Although this “ideomotor effect” has been well documented by researchers for decades, the proponents of FC never considered it as an alternative explanation for FC’s seemingly remarkable effects" (762).
Lilienfeld then turns his attention to sensory-motor integration, finding no scientific evidence for its efficacy, before he moves onto what treatments have been found to be "efficacious" (762). I think that, overall, there's probably something in this five-year old literature review to piss everyone off. I know that sensory-motor integration is popular and that the various treatments can be very enjoyable for the kids. Facilitated communication gives desperate parents with non-communicative children hope, and the diets and biomed treatments help parents feel like they are in control and doing something to help their children, and there you go, a psychologist reviews the literature on these things and declares that the evidence at hand do not support their use as effective in mediating the symptoms/behaviors related to autism. Lots of folks to be pissed off, right? Yeah well, we go where the science goes. For folks who live in uncertainty, accept the uncertainty and work hard to find answers while remembering all the while that absolutes are few, I've noticed they can really piss off the populace. Haven't ya'll?
Well, if I haven't managed by extension to annoy anyone yet, we'll look at what Lilienfeld found there was science to back. In a move designed to take those not already offended all the way to ballistic, Lilienfeld pronounces what things have been studied and shown to mitigate things like "temper outbursts, hyperactivity, and repetitive actions": various drug therapies such as "haloperidol (Haldol), atypical antipsychotics such as risperidone (Risperdal), and selective serotonin reuptake inhibitors such as fluoxetine (Prozac)" (762).
Not enough to get the folks out there riled up? Well then, I know this will please some of the folks who read me no end: "The most efficacious psychosocial treatment for autism is applied behavior analysis, which focuses on positively reinforcing and shaping selected target behaviors such as appropriate interpersonal interactions and use of correct language" (762).
I don't think Lilienfeld wrote this piece to perturb anyone, actually. He reviewed the literature and wrote a calm, rational piece that was published in Pediatrics, designed to reach out to practitioners so that they could make evidence-based offers rather than the woo ones. Psychopathology is a loaded word in the popular culture, and especially in the autism community, and I can easily understand how it would offend many to have themselves or their children and the autism classified as a psychopathology. Not fond of it myself. It conjures defectiveness and stigma that we're still trying to remove from those who have neurological conditions and differences.
Deviance (of which pathology fits under) is often, especially when it is related to behaviors, socially contrived. Stim behaviors, if they are unusual from the general public's stims, are deemed deviant, odd, and are used to frame part of the argument for autism as a psychopathology. Repetitive behaviors that others do not see the purpose in or that appear odd within the social context they are occurring in are labeled deviant and used, as well, in the psychopathology argument. Social difficulties and awkwardness, along with communication problems are the remaining criteria officially sanctioned by the American Psychiatric Association for defining autism. There are other things that we commonly believe to be associated with autism that, depending on your camp, skew the various definitions of autism far afield from each other, so far that I often wonder when reading the AoAers (Age of Autism, an anti-vaccine site) if we are even talking about the same things. I think we are not, but I don't know if that's because in actuality their children are fundamentally different from mine or if they've merely convinced themselves they have sick, sick children and then push their warped reality over onto everyone else's reality of autism.
Straddling the various worlds I do, it often is daunting and always challenging to find a way to sensitively convey information about the scientific literature in a way that does not add to autistic adults' burdens; far too often the rhetoric they hear is that they are damaged and defective, broken and socially unacceptable, and it strikes me as a significant deficit in the scientific literature when sensitivity towards the population being studied is not displayed. It, at the very least, makes me shake my head and wonder how well theory of mind is working in the "typical" person, although I have come to accept that we all have issues, and some of us have more than others; it's best to aim for being understanding of the fact that not all of us wear our issues out where folks can readily see them.
The aim behind Lilienfeld's article is a noble one (and he's one of the coauthors of 50 Myths that I had a post on last week, so I appreciate his work); promoting evidence-based practices is a good thing to do, and the right thing to do. It's also a good thing, though, to begin to examine the language we use when discussing various conditions/disorders/impairments/disabilities, and to work towards destigmatizing them.
And even more important, perhaps, is the need to examine carefully what we as a society, and consequently scientists, choose to label psychopathology. It seems to me we're in need of both a language update and an empathy update in the medical and psychological fields to go along with our desire to back up our treatment options with sound and solid scientific evidence.
Lilienfeld, S. (2005). Scientifically Unsupported and Supported Interventions for Childhood Psychopathology: A Summary. Pediatrics, 115(3), 761-764. doi:10.1542/peds.2004-1713.