Susan's Blog

Monday, May 21, 2012

Autism Mommy Swami #4: To stim or not to stim

Dear Swami….

I’m like the wind blows, back and forth.
Stimming… ahhhh!
I listen to some and they say, let the child stim.  It’s who they are, they self sooth, telling them not to is the same as saying there is something wrong with them, and don’t be different.
Some say, if they’re stimming, they can’t be paying attention to school work, peers, things going on around them.  Allowing them to stim will keep them from succeeding.
The school allows full stim.
His Autism Specialist says control it.
What do you think?


Dear Windy,

First let me say how entertaining I found your email format to be!

Second, let me say how sad it makes me that there is this angst in the world about stimming. I know from deep experience how Nat’s stimming has made me feel over the years, how uncomfortable. But my deeper embarrassment is that I care at all. Nat’s stimming is necessary to his comfort and more; I know that, but being a silly flawed human, I still am not at the point where I feel comfortable when he stims in public. It is not that I am ashamed of him, not at all. It is that it puts me back in that place of loss, where I once realized that Nat was not going to have the life I had dreamed for him. He was not going to have a mainstream, red white and blue kind of life that I could provide and wanted to provide. Of course none of my sons has turned out to be mainstream, steak-loving short-haired males, but neither is their father, and neither is their mother, so to speak. But what my other sons are is not the point here. It feels like they had a choice to be alternative and different; Nat did not. His autism made him different from the start, which is not bad in and of itself, but it does make life harder. Mommies usually do not want their children’s lives to be hard. Our duty is to give them life and to help them survive and carry on. It is genetically programmed into us.

So the stimming brings me right back to the point of shock, where I see how Nat appears to others, and they are so wrong about him, in their silent ridicule or misunderstanding of him. They are so wrong! And yet I can’t do anything about it! I can’t realistically stop them in the street and say, “Wait, no! You don’t know him at all! You think this self-talk is wacky but it means something! He’s not stupid, he’s not someone you can just scrape off your shoe! MY CHILD! Really? You’re going to laugh at MY CHILD???  But he’s so awesome!  Wait, look, see how he can smile even if the world is confusing to him? See how he learned to navigate the outdoors safely, despite so many strong impulses?  Look, damn you! Look at him. See his deep and real Personhood (you fucking idiot).

Those are the feelings I have when Nat stims in public and they are not easy feelings to have. I would rather not have them. But do I say with painfully clenched teeth: “STOP THAT, NAT!” No, I don’t. The most I have done is to add a new layer of skill to his social repertoire:  the ability to be quieter, and/or choose a different time and place for it. Or choose a more socially acceptable stim. In Nat’s case, he can do “quieter silly talk,” (yes, that is what we call it, from a long time ago, and that is how he knows it, and it is too hard at this point to change over to a kinder terminology.) or do silly talk after the supermarket.

Sometimes, though, happily, I just don’t give a shit, and I feel just totally in love with him, and I want to stim right along with him. IN YOUR FACE, WHOLE FOODS UPTIGHT BITCHES!

Sorry. The Swami gets very heated about perceived attacks on her babies. You understand.

On the question of whether allowing them to stim gets in the way of their understanding school lessons, and what goes on around them… well, yes, it probably can do that sometimes. But sometimes it is the other way around. They aren’t understanding what is going on around them and so they stim! If I didn’t understand what was being said all around me, the way I felt in London, for example, I space out, and I focus on the “wrong” things (my shoes, my hair, which I smooth down, fluff out, smooth down, flatten out… sounds a little stimmy, doesn’t it?). I don’t know, but does doing that to myself perhaps reassure me that I’m still here, even though I am so cut off from everyone else around me?

I think the best solution is taking it a stim at a time. When it’s no big deal, it’s no big deal, let it be. When it is a big deal to be more still, you can help your child understand time-and-a-place-for-everything, and that is good for his survival in this bug-eyed world, the demanding schoolroom or workplace. But it has to be done humanely, acknowledging the importance of stimming, something like this, “Oh, sweetie, I know you love to flap, but in this room flapping has to be quieter. You can flap when the bell rings and class is over.” Or “You can flap in ten minutes, let’s set this timer.” Or, as in Nat’s case, we do tell him not to suck his thumb in public, and so he then taps his thumb against his lip, and seems to enjoy that, too.  I think it is a sign of caring to help your child figure out acceptable and subtle relief.

I never believe there are black and white answers to these kinds of things.  We’re trying to teach our autistic children to discern gray areas and be comfortable with them, because life is about the gray areas. Stimming is neither good nor bad, it just is, but it can be softened without shaming, just to help one fit in a little better.