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Friday, December 29, 2006

What is Autism -- Part 4

Sensory Integration Disorder

A student and a teacher are walking down the hall. The teacher's hand rests gently on the student's shoulder, exerting a little pressure to guide the student in the direction he/she should go.

Nothing unusual here, right? It happens just about every day in nearly every school all across the United States. But, wait...

The child flinches away, shouting, "Ow! You're hurting me!"

"No, I'm not," the teacher says. The teacher reaches out for the child, who nearly bumped into another student.

Is the teacher right? Did the teacher hurt the child? The teacher was, after all, gentle, using a light touch and a little pressure. The teacher didn't do anything wrong (unless, of course, there's a no touching policy).

Perhaps, like the teacher, you would assume the child is lying to get attention, being belligerent, or over-reacting. However, if that child has sensory integration disorder, then it is distinctly possible that the child's body registered this light, gentle touch as painful.

Most of us have heard the journalistic axiom of conflicting witnesses: If there are five people at a car crash, and you interview all five people, you're going to get five different, potentially conflicting descriptions of what happened. The reason for this is that each individual perceives the world through their own unique set of senses. That perception is then processed by our individual brains, translated -- however our brains do it -- into memories, and recalled and expressed at a later time. No two people perceive exactly the same thing. And yet, it's a very human tendency to assume that everyone else experiences the world exactly as you do. But, in truth, we each experience the world differently; individuals who function through the lens of sensory integration disorder can experience this world very differently than normal.

Does it hurt to brush your teeth? Normal response: Only if you're brushing too hard. But, is that true? For those of us who experience pain when brushing our teeth, myself and my children included, is it the force involved...or the sensitivity of our mouths? Does it hurt to get your hair or finger nails cut? Again, only if you're doing it wrong, unless...

It can be difficult to imagine how someone else experiences the world. To put yourself in their perceptions. It takes effort and understanding, but it is possible. First, you have to ask questions. One thing I found when I started asking these questions was that how experienced the world, how my senses perceived daily living tasks was, in some instances, very different from normal. Understanding what normal is, and where you yourself deviate from that normality, helps to understand others who deviate from that normality in different ways. The more you probe about what normal is, the more likely you are to find ways in which you deviate from that normality. However, individuals with sensory integration disorder experiences many more abnormalities, usually to a greater extreme.

For instance, Brandon, Willy and even Alex love to play in the ball pits. You know the type...plastic balls, trapped in a cage-like netting with padding around it. Usually it's like a mini swimming pool, big enough for little kids to nearly drown in...if you could drown in balls. My older boys absolutely love playing in these contraptions. However, Ben abhors them! At the first scratch of plastic ball against plastic ball, Ben screams. He continues to scream as long as he can hear the sound. It literally hurts his ears.

They each have their sensitivities. Willy, for instance, cannot stand the fan in the bathroom. He'll put his hands over his ears and say, "Turn it off! Turn it off!" Alex is more sensitive to touch. The sharp angles of a pencil in his hands is painful to him. A hug, at the wrong moment, can hurt. He fluctuates back and forth between needing lots and lots and lots of touch, to needing no touch at all. Ben doesn't like wearing clothing. Alex can't stand pudding or jello or anything mushy in his mouth. The list goes on and on, different for each child.

This is sensory integration disorder, also known as sensory integration dysfunction, or simply SID. It's supposedly co-morbid with autism, and yet I've never met an autistic individual who doesn't have some "abnormal" sensory issues. While I recognize and emphasize that this is not a scientific sampling by any means, it does give me cause to wonder. Is the context issue that I find so prevalent when looking closely at autism related to these sensory perception differences? I think so. Jumping to conclusions? Perhaps. But, considering the kind of research that would tell us hasn't been done...conclusions without scientifically established fact is all I have.

This is why I feel it is important to take a look at sensory integration disorder when you look at autism. There is something that, at the very least, ties them together more frequently than you find in normal circumstances. Someone can experience sensory integration disorder without autism, but the chances of someone with autism NOT experiencing sensory integration disorder seems rather small to me. In that, they have a link that isn't, to my knowledge, established with anything else.

***There is a link to autism and mental retardation, however I think this link is presumptive, and arrogantly so, based more on the fact that an individual who doesn't relate with/understand the context of the tests involved are not going to score well than on a lack of innate intelligence.***

So, sensory integration disorder. What senses are involved? Let’s count them: tactile, visual, auditory, olfactory, taste, pain, proprioception, and vestibular. Two of these may seem odd to you. Proprioception is one's awareness of space; where one's body is in space, movement, posture and pressure are all matters affected by proprioception. Vestibular refers to a particular part of the ear that acts as a balancer. Balance and equilibrium are both affected by perceptions derived from the vestibular system in the body, which works hand in hand with proprioception, and all our "regular" senses to help us interpret our environment. If any one of these senses are sending you "faulty" information, i.e. information that doesn't jive with the perceptions of others, then you're going to react to the world differently that those others do.

It is difficult to cope with certain things through such a lens, however there's also a lot of homeopathic-type things that can be done, and easily so, to compensate for these differences. Understanding and properly applying this veritable smorgasbord of sensory regulation techniques can dramatically improve the quality of life of the individual and their connection to the world. By helping them to better understand our context by alleviating some of the ways they suffer from our environmental norms, we can help attain a shared context that allows such individuals to participate more fully in this world we share.

If you are a parent of a child with autism, my first and foremost suggestion is to contact an occupational therapist, with a strong prefer for one trained to work with "disabled" children. Such a therapist is likely to know about sensory integration disorder, and is likely to know how to counter-act it...or, will at least be able to get you started. Another great resource is a book called The Out-of-Sync Child, which can tell you much more than I can in a single post. The sequel, The Out-of-Sync Child has Fun is also a great resource for regulation ideas.

So, what is regulation? Generically, it's common enough, but when you're talking about sensory regulation it means to help the individual obtain a sense of peace with his/her body. For my boys, this usually means two things: 1) Lots of pressure, 2) lots of movement. Pressure via hugs, bear hugs, squishes (hugs with pillows), crashes (jumping and flopping on furniture, pillows), and hug vests (spandex-like vests that "hug" the child). It can also mean, weighted blankets, weights on ankles or wrists, or weighted vests. It can be tugs-of-war, carrying heavy things like a gallon of milk or a laundry box full of toys. It can be a variety of things. Giving their muscles the full-on sensation they need...that's the essentials of it. And motion, that's swinging, and spinning, and bouncing. Anything to jar the "faulty" norm they have established and re-establish a "better" norm that helps them interact with our context better.

Remember how Alex is non-verbal? When Alex is fully regulated (rare), he can talk in sentences. Something about his norm seems to disconnect his mouth from his brain. We don't quite understand it yet, but there are times when Alex can talk. This is the powerful connection that sensory integration disorder, and more importantly sensory regulation, has to autism and overcoming the challenge that autism presents to the individual and those around him/her.

Now, back to that last pesky section in the diagnostic criteria for autism (DSM-IV). The "apparently inflexible adherence to specific, nonfunctional routines or rituals" (emphasis mine) do actually have a function. They help autistic individuals regulate themselves so that they can interact with their surroundings, they help order a seemingly chaotic world (the autistic's perspective) into something that has enough order to interact with, and they help provide an individual struggling with "distorted" perceptions make sense of seemingly non-sensical world. If you want to deny the individual these routines and rituals because they're not "normal," then I highly suggest you have something else in place to serve the function they served -- which requires understanding the function they serve. Those "stereotyped and repetitive motor mannerisms," which I called stimming, are forms of sensory regulation, which is why it's called self-stimulation. Again, word of warning, if you would deny them this, you better replace it with something else. Many people advocate taking specific actions to "normalize" autistic individuals, without taking into account the needs those individuals are trying to meet. If you don't meet those needs, which are, in fact, needs, then you are hurting the autistic individuals, not "normalizing" them.

Now, I opened this with an anecdote, and I want to tell you a little bit more about that. One day last year I was going into my children's school for an IEP for one of my younger children, and I passed Willy in the hall. Since my presence at the school can "shake his world," I tried to be unobtrusive and pass by unnoticed. However, I saw the teacher gently guiding Willy to his next class, a pull-out class, and heard the exclamation, "Ow! You're hurting me!"

The teacher said, "No, I'm not, Willy." And I had to stop. I had to speak. It's just the way I am.

"Actually, [name withheld], you probably are." With her permission, I demonstrated on her how she was holding Willy. Her fingertips pushed gently on the muscle of Willy's shoulder, barely touching him. But, that ungrounded pressure, coming seemingly out of nowhere (to Willy) was painful, because it was out of context with what he recognized of his surroundings. I showed her a more appropriate form of touch, with her palm on that same muscle, and her fingers wrapped over his shoulder, with a lot more pressure (almost "too hard") and sent them on their way. As Willy made it to his class, he said, "That feels much better," in his typically melodramatic way.

Being sensory smart can make a world of difference when trying to align two different perceptions into one cohesive, productive exchange. And to me, that's what this is all about. It's not about getting them on our page, but getting to the point where we can both read what's on each other's pages and interact accordingly.

Coming soon (maybe before I even go to bed) will be What is Autism -- Part 5, What Autism is NOT.


At 12/29/2006 9:17 PM, Blogger mcewen said...

I have two versions of the same disorder - one who feels virtually nothing and is impervious to pain [bad wiring] and the other who is hyper-sensitive - no hair cuts, nail clipping, touching without prior warning or permission, a mouth that has more pain receptors per square millimeter than I ever believed possible.
Makes life so much more exciting for all of us.
Best wishes

At 12/29/2006 9:21 PM, Blogger Stephanie said...

Ben is my impervious one (except to sounds) and Alex is my hyper-sensitive one, and Willy is somewhere between them both. And, you're right, it does make things exciting for everyone here!


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