Tuesday, January 20, 2009

My Sense of Sensory Issues

I don't remember where I first heard the outlines of the following illustration, but I know that Joy's senior barista/therapist used it recently at a team meeting and I've used it myself in a presentation to my church! It introduces the concept of sensory regulation:

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.


Anonymous said...

I suppose I could understand the notion that SPD is not a disorder of its own but a symptom. Though for individuals with SPD and no other diagnosis, I'm not sure what it could be a symptom of.
I think there's a problem with the idea that no (or very few) adults have Sensory processing issues. There's certainly a difference between "they don't exist" and "there hasn't been research to confirm that they exist."
I do think that whether SPD is a symptom or a disorder of its own, it should be treated by those who work with individuals who have clear sensory difficulties. I personally can't focus until my sensory issues are mitigated, so no additional progress could have been made until my sensory issues were pinpointed and ways to deal with them were identified. I imagine its the same for most people.

Anonymous said...

there is absolutely no question in my mind that SPD is real, is challenging and is unfortunately just as individualized and difficult to pin down as ASD.

(i love 'woo' - i think i may adopt that!)

Anonymous said...

JoyMama you do an excellent job of advancing the cause of helping others understand treatment decisions. I am grateful and happy to be in your reading audience (and for yet another link to my blog).

Your intitial example of common sensory-regulating-behaviors vs. those that overwhelm some - similar to a post I did last year called "Sensory Extremes". All of my posts on sensory issues are listed in my middle column, if others are interested - including "Sensory Summary".

I think 'prescribe' is an appropriate word for the decisions the OT makes - similar to an 'exercise prescription' - more commonly given by PTs.

For the decision to give SPD the 'diagnosis' - consider the example of the common cold. There are common symptoms to colds that are caused by both viruses and bacteria, but the treatments are different.

SPD lacks a physiological cause for distinguishing treatment.

"a nonspecific indicator of neurodevelopmental immaturity"

I do not think this statement implies persons WILL outgrow their sensory sensitivities. Some will, some won't. Some will learn to accommodate their natures within their lifestyles. 'Immaturity' is still accurate, for some, in my opinion.

Some adults do show evidence of SPD. That OT in the 70's demonstrated improvement with her techniques in institutionalized adult (some elderly) with schizophrenia. NOT wanting to start a tangental discussion here...in hindsight - that population might have improved with any attention, eh? And more than anything sensory, she used movement (aka exercise!).

Wrapping this up with another compliment to JM for helping to separate the woo from the true.

A Bishops Wife said...

"Temple Grandin reported creating a kind of contraption for herself that would smush her between two boards to give her full-body pressure"

I love this post.

My son Noddy, likes to lay on the floor and put couch coushions on top of him and have one of his brothers smash him. He asks for it and begs to be smooshed. He says his bodt feels like it is floating or something.

He moves, bounces, twists and flips his fingers very fast. He is always saying his legs want to run or move. He says he has restless leg. He must roll side to side very quickly, many times till he goes to sleep, even in his sleep. He rolls himself back and forth, I do not know how he can sleep like that.

He complains that his body is floating and it feels "funny" in a way he can not discribe. Although he seems "use to it" I think he suffers at times as it is invasive to regulate. He begs for full body pressure. I will give him massages and he like that and it seems to help. He likes squeezed too. He seeks it.

My doc. has never done anything, he says there is nothing we can do. Is that true? What would help?

We began homeschooling a year ago, because all they want to do is say he is hyperactive and give him pills, which did no good at all. He does not need medicated, at least not in that way. He can not learn in that enviornment anyway, too too much movement, cluttered paperwork (too much stuff on one page). He can not see or comprehend the work if it iss cluttered with pictures lines and problems. He can do it but not when presented like that.

Ahh well.....I feel I have found an alli who understands finally! I will stop now. Sorry so long.

Anonymous said...

Very interesting post, and I think you can take back the RatK title for now!!

Anonymous said...

Thanks, ARatK!

Anonymous said...

Re-reading the comment from A Bishop's Wife brought me back....

JoyMama, have any of Joy's staff tried or suggested compression garments?

TheraTogs are in this category, but there are less expensive and complicated types.

If you are unfamiliar with this term, think of support hose, but in a body suit way, or like a scuba suit - instead of weighted vests or blankets.

The 'floating' comment brought this to my mind.
Barbara RatK

JoyMama said...

Thanks everyone for the comments. Good food for thought. Thinking things over, it seems that there are a couple of strands in terms of what's "dubious" about SPD and what's less so. First there's the question of "is it legitimate as a diagnostic entity"? Me: not qualified to judge.

Second strand: are "sensory issues" legitimate as at least a potentially-related cloud of symptoms? On much firmer ground here, I think, to answer this one in the affirmative.

Third strand: what about the treatments/therapies? As long as you keep the discussion in the realm of managing rather than curing, and you allow as how some therapies are "woo"-ier than others... absolutely, there are all kinds of potentially helpful things to try. Preferably under the guidance of an OT or other professional conversant with sensory issues.

A Bishops Wife - I don't think I'm going too far out on a limb here to say that I think your doctor has missed the boat with Noddy's sensory issues. Just because s/he doesn't know how to start with it, doesn't mean that nothing can be done! Some recommended reading for you (like you have any time for extra assignments, but at least it's not algebra!): The Out-of-Sync Child by Carol Stock Kranowitz is one useful and classic starting point. The Sensory Processing Disorder site that I mentioned in the post has almost an overload of all things SPD, but the "Getting a Diagnosis" page has some useful thoughts about getting a referral to an occupational therapist. I'm not sure that you necessarily need a "diagnosis" per se, but it does strike me that consulting with someone who knows up from down when it comes to sensory issues would be of great benefit.

Feel free to e-mail if you want me to go on at greater length!

JoyMama said...

Barbara - we were just starting a conversation about compression garments with Joy's OT earlier in the fall, and then we got assigned a new OT, and in the process of getting her acquainted with Joy and learning what new things she brought to the discussion, the compression garments thought had drifted off the radar. Thank you for re-introducing it!

Saja said...

May I take umbrage with the statement that people grow out of their sensory processing issues? Not hardly. Mine are, if anything, worse than when I was a young adult. They are very real and impact on my life every single day.

(I know you weren't making that claim, JoyMama; I just wanted to post an adult's SPD perspective in this thread.)

Saja (42-year-old autistic)

Anonymous said...

Ah! A months-old post discussion revived!

Lots of emotion in that word "umbridge", Saja.

Cale is an adult also, and like you, he can only "imagine its the same for most people".

Insofar as my comment about some outgrowing or maturing out of sensory issues, the key word is 'some'.

I've read many-a posts by parents reporting - "yea, we went through that phase, too" - implying the particular sensory sensitivity or obsession has passed.

Since I believe behavior is based in the nervous system, those changes denote either neural maturation. Or denigration (aging).

IF sensory sensitivities canNOT change, then all the SENSORY (integration) techniques are useless (woo). Many are convinced of their effectiveness for reducing sensory sensitivity.

Adaptation to sensory sensitivity is different from techniques meant to modify the neural system.

JM, did you see those ear plugs Saja posted-on recenty? (Rose? For when she is watching female lumberjacks and their chainsaws, eh?)