Kid in Spaaaaace!

Kids on the autism spectrum sometimes also have to deal with sensory integrative dysfunction or Sensory Integration Disorder (SI disorder)

(Definition at http://en.wikipedia.org/wiki/Sensory_Integration_Dysfunction)

Orangeboy seems to have some form or degree of SI disorder. He has managed a great deal of improvement in the last six years. He used to fall over or bang his head into something with alarming frequency. I even considered a helmet at one time. He would usually not respond when called by name and I had his hearing tested three times. He would trip, stagger, fall over like a board, fall down like ton of bricks, over-react to certain sounds, and talk way too loud. He often couldn't manage tasks that took even the least bit of grip strength, like opening a door or turning a knob on a toy, but would accidentally crush his glasses while holding them in his hand or mutilate other toys. Most of these problems have all but disappeared in the last couple of years, but he still seems to have this strange detachment from his own physical cues and sensations.

He still has to be reminded sometimes to go to the restroom. He is physically aware, but it doesn't seem to seep into (excuse the pun) the conscious/governing part of his brain. I'll see him doing a squirmy little move that makes him look like he has an uncomfortable STD or creeping undies, and I'll ask him if he thinks he might need to go use the restroom.
He replies, "Oh! Uh... Yes!"
And off he goes - usually at a trot. I've even seen him cup his hand to his backside and race to the toilet without bothering to turn on the light or close the door.
I would attribute this entirely to ADHD and being inattentive, except that he does not seem to even understand that it is possible to know, in advance of the point of discomfort, that a potty break might be an upcoming necessity. He's not two or four years old, he's over twice that. And he has been potty trained from about the usual age. It's just that he had to be told when to go. At age 3, if told to "go" at regular intervals throughout the day, he would not have an accident. But at age 6, he was still having to be told. I tried many times in many ways to teach and explain to him that he should think about when he needed to go and decide for himself and "just GO!" But it didn't work.

These days he will sometimes recognize that he needs to go without being told, but mostly he is compensating by trying to go when given an opportunity and by "holding it" for long periods of time. Just the other day, I overheard him tell his sister that he could go from one night to the next without going to the bathroom at all. I hated to have to explain to him that this wasn't a good thing. He was proud of this accomplishment and he has so few things that he feels proud about. He looked crushed when I tried to explain the situation to him.
In a way, I was proud of him for finding a compensatory strategy for overcoming his deficit of bladder awareness.

This lack of self-awareness sometimes creates challenges in other areas also. He is rarely aware when he is sick. This means he will behave normally (for him) and stick to his usual routine and activity level and then suddenly vomit up his entire lunch right in his plate. AAARRRGGHHH! This is usually my FIRST signal that I need to check to see if he has a fever. Then I cannot rely on him to tell me when his tummy is better and he might be able to keep food down. It becomes a trial and error game - usually with a few errors before the trial is over.

Yesterday he told me his mouth hurt. I asked if he thought it was his teeth, his gums or inside his lip, or what area of his mouth. He did not know. He DID know that it started hurting the day before at lunch time. I was unable to determine anything more specific. Today he said he had felt around in his mouth with his fingers and it seemed like there might be a place in his mouth. I believe he has a sore or ulcer and does not, in fact, have a cracked jaw or need a root canal. But wouldn't most kids his age be able to feel an ulcer with their tongue?!

Maybe I'm just expecting too much. At least it has been almost two years since he has suddenly keeled over out of his chair and fallen to the floor with a heavy WHUMP! for no apparent reason. Maybe he still doesn't have total awareness of his own internal spaces, but at least he knows where he IS in space.

rate me at


  1. Hi,
    The jury is out on my autistic's son's potty awareness (he isn't trained yet), but my typically developing son (4.5 years) seems to struggle with this. He's trained, and has been since age 3 - he just lacks awareness. So I've developed a sixth sense for the "squirmy moves".

    Best wishes to you and your fam. I read the backstory you linked to (day of dx), and look forward to following your blog...

  2. This amazes me. It didn't ring any bells until "Wouldn't most kids his age be able to feel an ulcer with their tongue?" That's when I remembered - the doctor asked me where it hurts, and I said, "I don't know." Kids his age, seniors my age. I think it might fall under the heading of proprioception, which I haven't researched yet.

  3. Anonymous16/10/08

    Hey there, I'm not sure if you're aware, but October has been deemed Sensory Processing Disorder Awareness Month. ;) SO, from a mom of an SPD kid, thanks for writing about it!


If you get it, please comment! At least LOL.