The night before last, I took Katie out for ice cream. It was a school night. It was cold. I was toast after a long day of work, fighting off the beginnings of the same cold whose tail end continues to dog her. We had no right, nor any real desire, to be going anywhere. But we had no choice.
She had been coughing through dinner. She couldn’t control it. And her sister, no matter how hard she tried, could not control her reaction to the cough. Brooke was a mess. She was crying. And screaming. And shaking.
I did everything in my power to make it better. But it wasn’t in my power to make it better. Katie had to cough and Brooke’s wiring simply couldn’t process it.
With all of my energy focused on trying to calm the little one, I missed it at first. I might have missed it completely had I not heard the sniffle. Katie was crying too. “What, baby?” I asked.
She shook her head.
“You know it’s not you, sweet girl,” I said. Please remember that it’s not you.”
She shook her head again. “It IS me, Mama,” she said. “Of course it’s me. I’m the one she’s afraid of. I’m the one making her miserable. How could it not be me?”
For those of you who are new around here, Katie is my neurotypical twelve year-old. She is bright as a whip. She’s more insightful and intuitive than most forty year-olds. She gets the joke. She gets people. And still, she can’t process the fact that her sister is afraid of her cough and not of her. And why? Because the message is clear. The cough doesn’t exist without her. The cough doesn’t walk into a room under its own power and upset her sister. But she does. Katie does.
And right now, simply the sight of her scares her sister because she is the one coughing.
You see where I’m going with this, right? It’s like an optical illusion – once you see it you can’t imagine how you didn’t before.
This is why. This is why it’s utter crap to think that we can get away with separating autism from our kids and that we can rail against it and as long as we assure them that we are not railing against them then we can somehow expect them to understand and accept that distinction. No matter how much we may want to believe that it does, the human psyche simply doesn’t work that way. Particularly the most vulnerable of psyches – the ones still developing under our care.
Katie and I got into the car and headed into town. “I just feel like she hates me,” she said. “It’s just so hard.”
I explained that it was the cough that Brooke had trouble with, not Katie herself. She said that she while she KNEW that, it wasn’t how it FELT. And that she was tired of FEELING like her sister hated her.
I couldn’t argue with her. This wasn’t a question of logic. There was no convincing to do. She could follow the thought process. But, as we all know, feelings and thoughts don’t always exist on the same plane.
I was at a conference last summer at which Ari Ne’eman gave an introductory speech, and it fell to him to explain why ASAN uses identity-first language. One of the things he said, which I really liked, was “If I’m on a flight and the airline loses my luggage, I don’t arrive without my autism.”
No matter what our view of autism’s origins, I think we can agree that it isn’t an appendage that can be taken on and off at will. It travels with our kids. IN our kids. As PART of our kids. And as such, it’s simply not reasonable to expect them to understand that we loathe autism but we don’t loathe them. Or that we hate this thing that afflicts them, but they shouldn’t hate themselves. Because even if we could get them to understand the difference intellectually, we’d be hard-pressed to get them to FEEL the distinction. And after the other night (and last night again and this morning again while Katie was still coughing and Brooke was still screaming), I was convinced that if we continue to tell these kids, through our words (to them or in front of them) or our actions, that we hate / fear autism, we are teaching them to hate / fear / pity themselves for having it. People do not separate themselves from what they have / how they act / what they feel / how they experience the world. And we as a society don’t either.
For the love of God, Katie had a COUGH – something temporary and fleeting. Something that will, God willing, be gone in a matter of DAYS. A cough – not the filter through which she tastes, sees, smells, hears, touches and perceives everything in her world. Yet because Brooke hated the cough, Katie’s entire identity became conflated with it. Driving with Katie, talking about how she felt, the implications of the moment rushed over me. And the weight of those implications was almost unbearable.
If we keep FIGHTING autism, HATING autism, FEARING autism, talking about the UTTER HAVOC that autism wreaks on us and our families, we will end up with a generation of children who have learned to hate themselves – or who, at the very least, hate things about themselves upon which they have no control or that, if they can control, they do at tremendous cost to their sense of well-being and self-esteem.
I felt like Katie was pleading with me, “Please get this,” Mama. “I’m begging.”
There’s no other message.
I’m not saying we can’t hate the challenges. Of course we can.
I hate that there are things that my child struggles with.
Fine, yes, amen.
(I would argue that it’s impossible to love someone and NOT hate the things that cause them to struggle.)
… but …
I love my kid but I hate this terrible BEAST that has ravaged her and I will FIGHT it to the bitter end?
No. Just no.
Because a cough – a god damned ludicrous little cough had my girl feeling rejected and hurt and to blame for the host of angst and pain and fear that she saw in the chain of dominos cascading down around her. Sound familiar? And that was because she couldn’t separate herself from A COUGH.
So when we say, “I love my kid but I can’t stand his spinning / flapping / humming / shrieking / fill in the blanks” what is it that our kid hears? How does that FEEL from the inside out for the child who, by doing those things, is simply being himself?
To one twelve-year-old girl who got just the slightest glimpse of it the other night, it felt like hate.