Sometimes Autism Sucks Big Hairy Monkey Balls

Note: This post has been edited and re-posted to correct some errors noticed in the light of day and with all my meds firing.

We interrupt our regularly-scheduled "Hooray for Autism" Autism Awareness programming to bring you this important message:

Sometimes autism sucks big hairy monkey balls.

It isn't all high math scores and charming quirks and Dustin Hoffman counting cards in Vegas. 

I wrote recently (in a post called Top Ten Things I'm Aware of About Autism) that I know we're fortunate that Little Dude falls on the high-functioning end of the spectrum. One of the comments on that post, from the writer of the blog Autism and Oughtisms, really hit home.

"My son has 'classic autism,' and I am sick of people dealing with much higher-functioning kids trying to say how beautiful and special autism is. My child is beautiful and special, his autism is not. I always soften my opinion about how much I hate the hell out of autism, because when I speak my mind, the higher-functioning come along with their happy-clappy opinions, never having experienced just how bad autism can affect a child (and I know many are worse than my son too)."

One of the things that worries me about Autism Awareness Month is that we'll go a little too far with the happy-clappy and people will be all if autism is so awesome, why do I need to be more aware about it? And more importantly, why should I give a crap about funding autism research?

Yes, Little Dude is incredibly gifted at math and spatial relations, and he is freaking awesome at all things Lego-related. I love him, exactly the way he is, so much that it takes my breath away. However, admitting that his autism is, in fact, a disability does not mean I think he is any less awesome or mean I love him any less.

Here, then, is a little snippet from yesterday's suckishness. It isn't even that big a deal, and Lord knows that parents with nonverbal, more profoundly-affected children are dealing with way worse. But it's a good illustration of the day-to-day crap that autism hands to my son.

Little Dude had an out-and-out, full-blown Aspie meltdown at Target yesterday. It wasn't because he wanted a toy I wouldn't let him have, or because he wanted junk food, or because he was tired, or because he wasn't feeling well. It was because he desperately wanted to go down the escalator, but was terrified of it.

He could not figure out how to step onto the escalator while holding the moving railing. Yes, he is awesome at spatial relations, so you'd think he would be able to do this, but he has limited motor planning. It's not that he can't step onto the escalator; he literally cannot figure out the steps involved in doing so.

There was probably also a sensory issue at play. He was hyper-focused on the moving stairs and I'm pretty sure the visual was overwhelming. Couple that with the vibration of the escalator. Add in the noise it makes that I don't even notice, but I'm sure exists.

He wanted to ride the escalator. He sees the people sailing up and gliding down; he knows his sisters love to take the escalator. He also knows that I won't let his sisters ride the escalator when we're all together, because Little Dude can't handle it, so we all stay together and take the elevator.

They have never once made him feel badly about this. But he knows.

He also has some significant emotional development delays; his frustration tolerance is about the same as a two- or three-year-old. This is why, when he is upset, it goes so full-blown, so quickly. This is also why, when the meltdown comes, I can no longer reason with my normally super-rational, uber-logical child.

Even once the crying, screaming, hopping, spinning, and jacket-throwing at stopped, it was hard to bring him around to reason.

"Well, how about if we take the elevator? You can press the buttons."

"I don't want to be here."

"We can go home, but then we can't buy the cookies we came here for. The cookies are downstairs."

"I don't want to take the elevator."

"Okay. But I think that's the only way we can get downstairs. If you don't take the elevator, we can't get cookies."

Silence.

Hopping.

Mumbling.

When Little Dude is upset, his speech is even less clear than usual. I have to kneel next to him to understand what he is saying.

"I want to try the escalator again."

We then repeated both the escalator attempt and the ensuing freak-out, except this time the meltdown was shorter.

Silence.

Hopping.

Mumbling: "Mommy.  Can we get just the cookies and then go right home?"

"Yes."

We took the elevator. It wasn't a magical, heartwarming breakthrough over his fear of the escalator, but was a victory nonetheless. A victory of getting back to rational thought: the elevator may not be as exciting as the escalator, but it still leads to cookies.

Target isn't crowded on a rainy Tuesday morning. There weren't any people swarming, waiting to get past us. So when the meltdown happened, there weren't too many spectators. If anyone stared, I didn't notice, because I was focused on my child.

I have, at some point, carried each of my four children screaming out of a store. This wasn't the time for that. I let the meltdown unfold and end on his time. I didn't have anywhere else I needed to be but right there with my son.

Watching his stress level go through the roof like that made it clear to me that yes, sometimes autism does indeed suck big hairy monkey balls.

Autism doesn't suck because my kid can't ride escalators. It doesn't suck because I didn't get the shopping done (except the cookies). It doesn't suck because my five-year-old has the emotional maturity of a child half his age. It's not about what the autism means to me.

Autism sucks because Little Dude often experiences the world as an unbelievably frightening, overwhelming, and stressful place.

Autism sucks because even if he eventually masters the elevator at Target, it doesn't mean he'll be able to use other elevators, because he has difficulty "generalizing skills." This means, for example, that after teaching him for years how to take off Velcro-strap sneakers, he finally got it. And then he outgrew his sneakers, and he couldn't transfer the skill to the new sneakers. As another example, after spending years teaching Little Dude to pee on the potty, and finally having some success, we moved. And we are starting at Square One because it's a different potty.

These things suck because he knows he could take off the last sneakers. He knows he could pee on the last potty. And it makes him frustrated and sad that he can't seem to figure it out.

Little Dude continues to grow and mature. His frustration tolerance is better than it used to be; he no longer throws things. Well, he threw his jacket today, actually. But on a regular basis, we're no longer getting beaned in the head with Lego sculptures. So yay for that.

I'm proud of him for 1) attempting the escalator, 2) attempting the escalator a second time after the first disaster, and 3) making the decision to get on the elevator instead of going home.

Plus, the second meltdown was shorter. That's progress, in my book.

And, we got the cookies.