Susan Senator

They’re extra-ordinary so better be wary
Because they come in every shape and size
–Winnie-the-Pooh

No one else is awake.  I woke up full of energy and ideas.  Time to sink my teeth into a juicy blogpost.  Not sure exactly what is there, but I have an image troubling me, of a friend, a new one, and the newness of the diagnosis.  Those raw days where you bleed at a moment’s notice, like an emotional hemophiliac.  What is it that is at the heart of this vulnerability?  I think that, along with the grief of not having what you had hoped for, is shame.  Shame is one of those lightning rod words; you can’t even say it without feeling it! Ick.

So I’ve been thinking about how shame works.  Shame is so deeply ingrained in us — that feeling of the sucker punch, of a cry in your throat that doesn’t get released.  All eyes on you, seeing the real, defective you. I don’t know the psychology of shame, but I think it purportedly comes from earliest rejection — as in early childhood not-getting-what-you-want/need and feeling worthless.  Shame is a feeling, of course, so it is not something you can just get rid of or reason away.  But, like all feelings, I’m guessing that if you think about it long enough, you’ll at least start to soften it up.

Shame is part of our autism baggage, and by “baggage” I mean the junk that hangs heavy on our child, cluttering our view of him.  Baggage is acquired, accumulated.  Because you know there was a time when you could see your child without anything getting in the way.  When Nat was first diagnosed, I would look at him, I remember looking at him standing in the playground, looking like Christopher Robin — beautiful, composed, dreamy, creamy.  I remember thinking, with the shards of my heart jabbing, slicing: “so — that [Christopher Robin thing] — is not true now?”  I wondered how the diagnosis changed the essence of Nat.  What was going to crumble away — was his beauty and darlingness really a facade?  He had autism, a monstrous thing, so a monster lurked inside.  Beware.

So then he’d do something “autistic.” Toss sand, say something weird.  And I’d look around quickly, like a squirrel.  Who noticed?  What would they think? And there, it was born, shame — that inexorable flesh-eating emotion.  I didn’t even recognize it at the time; the shame merely folded into the whole bad feeling stew that sloshed around inside of me all the time back then.  But it made me want to hide, go back to my sandy burrow away from all those eyes.

But then I’d get home and it was still there:  the feeling that something was wrong, that something bad was happening, was still there.  Nat, me.  Something broken, ugly, dark, dead.

Until, some moment later, it would be gone.  I would look at Nat and see just him again, and I would know that whatever it was, it was not him.  It was not actually the autism, either.  It was what I thought, what they thought, it was the evil maelstrom of thought swirling around Nat.  But he was still there, my little Christopher Robin.