Tuesday, May 4, 2010

Unidentified Hell

My son, who is nine, does not have autism. (Or Asperger's Syndrome.) He is highly verbal -- sometimes not stopping for breath. He looks you in the eye and desperately wants to be a part of things and to have friends. These are not things that kids with autism do, or feel (as we understand it.)

But, he does: feel like you are stabbing him if you touch him suddenly, and if he doesn't know you well, he doesn't want you touching him at all. Sometimes swimming lessons and tae kwon do classes would end in screaming because of instructors correcting his form. He's ended up in the corner, literally, yelling at the top of his voice when doctor's want to do a physical exam or change the wire on his braces.

One time he threw up because he was getting an impression of his mouth done at the orthodontist's and it took 45 minutes to coax him through the rest of the appointment. Actually, if I remember correctly, we even needed to come back a different day to finish the appointment.

When the doorbell rings and the dogs go barking and charging to the door, Robert covers his ears and yells even louder than them. He used to do this when the coffee grinder, blender or vacuum cleaner would run, too. And he still does it if the vhs tape comes to the end and suddenly shuts off with that loud "snow" before it rewinds. He still refuses to be around the vacuum, and obviously to vacuum his room.
He hates to wear socks and underwear, can't stand pants with buttons or snaps because his fingers have a hard time with the mechanics and he doesn't like to write. (I think the pencil or grip may hurt his hand.)

He wants friends but doesn't understand it when they don't want to play his games. Instead of asking a kid to play at a city pool with him, he'll jump on him in the water. When he hugs you, he often will hang on you -- or "hug you to the ground" -- causing discomfort or pain.

He doesn't understand where he is with his body a lot of the time. He lays on top of his sister -- or his dogs -- when he really wants to snuggle or be close to them to show affection.

He's self-centered. And I mean that not in a rude way. It's just that sometimes he's aware of other people only as it pertains to him in his own universe. For instance, he's hyper-sensitive if you've done something to negatively impact him, like bump into him or ask him to brush his teeth. These will be responded with -- sometimes -- physical retaliation (because it feels to him like your accidental bump was a punch in the arm) or a rageful yell and stomping of his feet. On the other hand, he has absolutely no idea when he negatively impacts you. To the point of blatantly denying that he's just stepped on your hand when there were two witnesses to the action. He didn't realize he'd done it, therefore he didn't do it.
He knows an exorbitant amount of facts about sharks and snakes. He's memorized verbatim, in some cases, several EyeWitness science videos and randomly spouts off facts to us. He's highly intelligent, does math in his head that I can't do (though that's not saying much actually) and excels at chess.

He hates to wear clothes and prefers to be naked, even in the winter. Although, conversely, he loves footy pajamas. He refuses hats and coats and gets belligerent and defiant if you "make" him take one anyway.

He's impulsive. To the extent of randomly leaving school, home or a park without telling anyone where he is going in the space it takes to gather your belongings or turn around and finish your short conversation. Thusly, for years I was terrified to take him in public, crowded areas for fear I would lose him.

He's impulsive less with his hands now. We've spent years working on vocabulary to describe his emotions instead of lashing out with his hands. Unsupervised playdates were (and still are, but for different reasons) an impossibility. Years ago, we had to leave many a birthday party or open gym because of him punching a kid in the stomach. Now I believe it was because he got overly stimulated and felt like the world was exploding around him with lights and sounds and abrasive textures and questions and taunts and people touching him and getting in his space. It was him defending himself. He still does it now, just not as intensely.
He doesn't transition well. If you tell him it's time to stop doing what he's doing and do something else (even if it's something you know he likes), you will meet with either: stony silence (and I haven't decided if he's pretending he doesn't hear you so he can keep going, or doesn't think you mean him even though you say his name, or he just really doesn't know you exist right now because he's hyper-focused on his task and a bomb could go off beside him and he'd only dazedly look up), abject refusal, or tantrum. Though, tantrums don't happen but rarely now, and usually need a good working up to.

If he's caught lying or breaking the rules, he'll tell you it wasn't him, it was his imaginary friends (Punching Boy, Skateboard Boy, Mean Boy, etc.) that did it, or maybe that they told him to do it.

Rather than believing this to be signs of early multiple personalities, psychotic or sociopathic behavior -- thoughts I once upon a time entertained -- I think this was possibly a way of him trying to explain his impulses. He can't stop them. He feels powerless and that he's so far out of control of his behavior when he gets those impulses, it's like he's not even doing them. Someone else is. Because he certainly wouldn't choose to do them. In fact, when he realizes what he's done, sometimes he'll start hitting himself in the head.

One time when I was concerned about his ability to empathize, we were on a playdate and Robert was playing by himself, the girls were playing in a different room and one of my friend's children -- a toddler -- started crying outside on the deck. Robert announced that the boy was crying. After we'd checked that he was alright, my friend pointed out that Robert understood that another being was in distress and sought out help. That was empathetic. But maybe he just didn't like the sound of his crying and needed someone to make it stop. And now I remember that crying babies, especially new little ones, were like the coffee grinder to him. He'd run out of the room when he'd become too anxious.

He hates rice (even rice pudding) because of the texture. He can't stand to have his hair combed, or cut.

He can play in water and sand for hours. He likes to bury things in yarn, clay, silly putty and sand.

He needs to know exactly what will happen in new situations like an orthodontist procedure or playing laser tag for the first time, or he will become agitated.

He is oftentimes inflexible in his mind. If he expects an O.T. session or school interview to go a certain way, and it doesn't, he gets mad and loud and refuses to co-operate. Though I have a theory about this.

When he rants: You can't make me! I'm not doing that! I'll never go to school! etc., I believe he's saying: You can't make me do that yet. I'll never go there yet. I think it is his socially unacceptable way of creating some time for himself to wrap his brain around transitioning to a new thing.

An example: we were talking the other day about trying O.T. (occupational therapy) again and he wanted to do it.

"Even if they ask you to do dumb things?"
"Even if they ask you to do things you don't want to do?"
"Yes." (he's pausing here) "What would they ask me?"
"Maybe they'd ask you to practice writing with a pencil."
(blow up)
"I'll never do that! I'll never go to school! I'm NOT doing that!!!!"
I ignore the outburst. He flops on the couch and I putter in the kitchen.
"Ok. I'll go."
Less than one minute later. He just needed to wrap his head around it and come to it on his terms.

His favorite food is cheese sandwiches. And often doesn't want anything but those. And I've done enough research to know that if your body craves and is "addicted" to a certain type of food, you are often 'allergic' or sensitive to it. He's also constipated a lot. Probably from all the bread and cheese. Gluten and casein.

I've also done enough research to know that every one of the statements I've written here, are also behaviors and symptoms of kids that fall on the autistic spectrum.

It makes me wonder, is all. It keeps me awake at night.

I look back to when he was two or three. He didn't get his vaccines and then suddenly become unresponsive and regress into himself. He looked me in the eye and crawled into my lap to be held and giggled.

But he did line up his cars in straight lines. And when he met Paul's mom (Robert's Nana) for the first four times, he wouldn't make eye contact and refused to acknowledge that she was even in the room.

And somedays it feels as if he's been frustrated and angry since he was four years old.

He's not autistic because he's highly verbal, looks people in the eye and craves interaction, socialization and friendships. But everything else I've listed points to a kid on the spectrum.
So what's going on for him?

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