Think of a crowd of people sitting listening to a lecture. Think of what you do at a lecture. Does everyone sit perfectly still and straight the whole time? Heck no. Some have their legs crossed and are bouncing their foot. Some twiddle fingers or play with their hair. Some doodle. Some gently shift their body back and forth. These are examples of the kind of sensory regulation we do every day. We unconsciously adjust our bodies to enable us to focus and learn.
Some people (like Joy, like many others on the autism spectrum, though you don't need to be on the spectrum to have sensory issues), have sensory needs and sensitivities that are so great that they can't just unconsciously jiggle a little to get to the point that they can be focused enough to learn, let alone get out of just an overall overwhelmedness. Some have super-sensitivities to noise or fluorescent light or texture or touch (like the wrong kind of fabric or seams in the clothes!), others crave more sensory input than their surroundings can automatically provide, often it's some sort of combination.
I recently read an anecdote by an autism consultant, who has autism herself, about throwing herself against the wall to get the input she needed to keep her sensory circuits from blowing into mass confusion. Author/scientist/autist Temple Grandin reported creating a kind of contraption for herself that would smush her between two boards to give her full-body pressure. Cale over at Spectrum Siblings posted recently about consistencies he can't tolerate. Anecdotal evidence abounds!
On the professional side, the concept of sensory integration disorder was introduced by an occupational therapist in the 1970s, and Joy's occupational therapists have been the ones with the expertise to guide (can I use the word prescribe?) her sensory interventions. Examples: How heavy should her weighted blanket be? How long can she wear her weighted vest before it begins to be ineffective? Would the Wilbarger brushing protocol be appropriate to ease self-biting problems?
So how is it that, as I've reported a couple of times now, the intake expert at Agency 1 of the two local intensive-autism-service-providers told us that Agency 1 didn't believe in sensory integration dysfunction?
Well, when I want a skeptical view of treatments or diagnoses that may not be generally accepted, there are two websites I visit first. One is Respectful Insolence, blogged by a surgeon/scientist pseudonymously known as Orac, who takes great delight in dissecting all manner of what he calls "woo." ("Woo" might be described as an antonym of "evidence-based.") The other is a site called Quackwatch ("Your Guide to Quackery, Health Fraud, and Intelligent Decisions"), also operated by an MD, a collection of information about potentially-dubious healthcare information.
I didn't find anything about sensory issues at Respectful Insolence -- a good sign! Quackwatch, however, has an interesting piece called "Why 'Sensory Integration Disorder' Is a Dubious Diagnosis" by Peter L. Heilbroner, MD, PhD.
"Few pediatric neurologists believe that SID is a real diagnostic entity," the article claims. Indeed, it is not a DSM diagnosis, and Tim commented a few posts ago that it seems to be losing the bid to make it into the DSM-V. Instead, the author goes on, "many neurologists...feel that 'sensory symptoms' are a nonspecific indicator of neurodevelopmental immaturity." (In other words, people grow out of it, therapy or no.) "Given the fact that few (if any) adult patients have sensory integration disorder..." Hmmm.
I think the big kicker is this one: "A review of the literature on sensory integration disorder reveals mostly poorly designed studies and flawed methodology."
You'll encounter a related caution at the site Sensory-Processing-Disorder.com, a sprawling site written by an occupational therapist named Michelle, who also runs an Amazon.com site with a fine selection of sensory-related books and products. (As a librarian and critical consumer of information, I'd have liked to know her full name and more specific degree/credentials, though since she talks about her daughter, I can see why she might have chosen to go by first name alone.) On a page called Is SPD a Real Diagnosis? she says:
One of the most frustrating things about Sensory Processing Disorders (Sensory Integration Dysfunction) is that there has not YET been enough significant, massive, SPD research through controlled studies to quantify, prove, or predict the symptoms and life course of this disorder (in the eyes of the medical community).
If you click the SPD Research link in the quote, you get a list of links to SPD-related articles and bibliographies of which she claims, "If you want to know... Is SPD Real? This should 'prove it'." Unfortunately the list of links is not a critical bibliography, and nothing at all like a Cochrane Review (a huge name in evidence-based medicine; SID/SPD has not been a subject of review there. Yet?) I think she's right that the growing mass of research will eventually get to the point where much more can be said with confidence about SID/SPD. However, a mass of links does not a scientifically-valid argument make. Anti-vaccine sites have their lists of links too...
Barbara at TherExtras ran an interesting series last fall about sensory integration. I was particularly struck by her account of a seminar she attended, where two very likeable presenters served up a program on sensory integration that had distinct overtones of "woo," backed by an outdated bibliography. Alas. Not that such a seminar invalidates anything about sensory integration, but it doesn't exactly advance the cause either.
Well. I'm running at the keyboard here, and this is perhaps not one of my better organized posts, but I'll go ahead and put it up anyway. Next up will be examples of the sensory interventions in the toolkit that we're using for Joy! See, skepticism notwithstanding, we do believe in sensory issues, and their centrality to what will help our Joy.