Okay, so I had planned to write about Nantucket today. About how excited I am for the trip tomorrow and blah, blah and blah. Actually, I DID write about it. But it’s going to stay put for now, nice and comfy cozy in my drafts folder.
The reason that I’m not posting what I intended to post is THIS. Go ahead, read it. I’ll wait. If you don’t have time, we can move on, but promise me you’ll go back to it later, okay? It’s worth it; I promise.
It’s written by a woman who goes by Autisticook. And it’s about the way in which she was told that the urge to be a mother would feel versus the way that she actually experienced it, the latter of which was very, very different from the former.
And it’s about not trusting her own experience of those emotions because she’d been conditioned to believe that there was only one way to feel this particular feeling, which might sound absurd to the ear, but doesn’t to the heart, because that’s what we parents, and neurotypical folks in general, do, isn’t it? We project our own emotions onto our kids (and the people around us)? And when we have children (or friends) for whom identifying and communicating their internal lives is damn near impossible, we “help” them, don’t we? And how, exactly do we tend to “help” them? By telling them what they feel, right? Isn’t that what we’re taught to do with our autistic kids to help them learn to identify their emotions? Tell them what we think they’re feeling? Which we can only do based on our own (sometimes wildly off-base) assumptions of how they “should” feel based upon how we “would” feel in a similar situation. Are you still here? I know, it feels Mr. Toad’s Wild Ride, but stay with me; it matters.
You see, in the post, Autisticook says this:
And I never considered that maybe I feel things differently from others. Even when I started figuring out that maybe I’m autistic, I still didn’t think that this might mean I simply feel things differently from others. That it doesn’t mean I don’t have emotions. But that how others describe those emotions simply isn’t related to how I feel them.
And then this:
But I know how to describe the feeling that I’ve always believed myself to be cold and uncaring and not maternal, because I trusted that others knew more about emotions than me.
That feeling is sort of anger and grief mixed up. I think.
And too many tears to count.
And Oh. My. God.
I was wrecked.
Because, Oh. My. God.
This is what we do – to ourselves, to each other, to our children.
And I thought of this:
At bedtime, I curled myself around her back as I always do. We cuddled and I pulled her as close to me as I could.
“Brooke,” I began tentatively, “when Tayley died, how did it make you feel?”
“He died. Tayley is dead. We flushed him.”
“Yes, honey, but when he died, how did you FEEL?”
I was on unfamiliar ground. I was desperate to give her a forum to talk about her feelings. But she doesn’t have the language to express more than two of them – or three if you count the occasional ‘frustrated’. I have no idea how much she understands what ‘feelings’ even are. But she had FELT something. I know better than to make the erroneous assumption that because we can’t see her emotions, she’s not feeling them, and this time there was no way in hell that she hadn’t felt something pretty damn intense.. So what then? What had it been? How do I give her the tools to talk about how she feels without making assumptions about how I think she feels? Just because losing a pet would make ME sad, can I assume it should or does make her sad too? Gaaaaah!
“Because he died,” she said.
“Yes, honey, HOW did you feel because he died?”
I gently asked three more times. I was determined not to lead her into an answer. If I put words into her mouth they’d be meaningless. The third time she answered differently.
“I feeled sad.”
Progress. HUGE progress.
My daughter tends to laugh when people close to her get hurt. If you didn’t know her, you might very well conclude from that isolated fact that she lacks empathy. In fact, you might even think her cold, callous, even cruel upon hearing that she laughs in the face of others’ pain.
But to know her well and to hear the laugh is to understand that it bears not even a remote similarity to the one that she emits when experiencing joy. Instead, it is a visceral pressure release valve. An automated response to far too much input because, contrary to what the old Sally-Anne test might have us believe, she FEELS others’ pain so intensely that she needs a way to process the emotional overload.
But if we don’t take the time to search for context, if we don’t dive beneath the surface to look at WHY her behavior is what it is, we can easily convince ourselves that she is deriving pleasure from someone else’s pain. This conclusion, drawn without context or depth of knowledge or broader understanding of how she experiences the world would be not only useless, but terribly destructive.
And then I wrote the longest comment on the post, which went like this:
Oh, man this hits hard, on so, so many levels. Firstly, it’s beautifully written. Secondly, I just kinda want to reach through the ether and give you a hug (if you’re a hugger). But this .. “because I trusted that others knew more about emotions than me” … this is so, so important for all of us to really, really hear.
My daughter has trouble labeling emotions. That leads us to try to help her to do so, since it seems like an important tool for her to be able to describe to others what she’s feeling. But in helping her, we end up guessing a lot, assigning a lot, assuming a lot. We say things like, “Wow, you look frustrated,” or, “Gee, I know that when X happens to me, I feel Y.”
But every time, I pause, and I try to table my assumptions or at least couch my language because I know full well that she experiences the world differently than I do. That what may look like frustration from the outside might feel like something else entirely on the inside. That just because Y is my reaction to X, or even a typical reaction to X, it sure as hell doesn’t make it the only or “right” one.
I want her to know that what she feels is VALID. That it may be a different expression of a feeling or it may be a different feeling entirely, one that I simply don’t have the lexicon to help her describe, but that it’s okay to feel it, whatever the heck it may be and that whatever it is, it’s just as real as anyone else’s version.
This is why I get so bent out of shape by the whole “autistics lack empathy” crap. That’s why I write stuff like this in response to it …
And it’s funny really (in a not funny at all kind of way) that we talk so much about the inflexibility, the rigidity of those on the spectrum when really, isn’t it US, the so-called neurotypical population, who are stuck in this frightfully narrow rut of perception? Isn’t it us who insist that autistics conform to our version of .. well, everything? Isn’t it us who are really so rigid in our thinking as to be capable of dismissing the idea that other ways of processing / thinking / communicating / experiencing are wholly invalid? That’s pretty remarkable (and, in its practical application, horrifying) stuff, isn’t it?
And this ..
Time and time again we hear and we see that the manifestation and expression of the human experience is different for those of divergent neurotypes than it is for neurotypicals. It is expressed, well, a-typically. But because we don’t recognize the expression as the same as those manifested in and expressed by our neurotype, we dangerously dismiss the possibility of its very existence.
I’m not sure I’m even making sense anymore, and I really, really don’t mean to be taking up so much space here, so I sincerely apologize, but the pain and the longing in this post is just so … well, I wish it didn’t have to be. I wish someone could have said to you, “This is how I experience maternal urges, but it may be very different for you.” And I hope that we can do that now.
Thank you for writing this. You’ve just changed my back-to-school letter to my kid’s team and for that I am grateful. And I pray that you find peace in all of this and I really look forward to reading more.
Followed by another that said this, because, yeah ..
P.S. that might have been the longest comment in the history of the world. Please don’t feel obliged to publish it
And this morning, I still can’t stop thinking about this, because it MATTERS. Because I never want my child to doubt the validity of what she’s experiencing just because it’s different from my experience — or anyone else’s. And I thought of my Facebook post yesterday – the one that said this:
So you know when your kid just will not eat dinner and it’s like salmon and rice which are two of her four favorite foods not including gummy cherries but she still won’t eat it and she says she has a stomach ache but keeps asking for an ice cream sandwich because “dinner is all done” even though it’s clearly not ’cause she’s not eating and you tell her that she has to have healthy food before she can have crap (but you don’t say crap cause she’s a parrot and that would be bad) and she continues to protest and you continue to push and you FINALLY convince her to eat it because she REALLY wants the damn ice cream and then when you take her out to the patio to eat the ice cream she barely touches it because she says she’s full and you’re totally confused because, well, it’s ice cream, and then you hear your husband from inside the house say, “Uhhhhh” and then he comes out to the patio to ask your kid if she knows anything about the empty bologna container on the couch in the den and she says, “I ate it,” and he says, “When?” and she says, “Before,” and he says, “ALL of it?” and she says, “YEAH,” and then you realize that your 51 pound kid ate a half a POUND of bologna before sitting down to dinner and suddenly it all makes sense and you feel like a horse’s ass and then you start to wonder what a half a pound of processed meat is going to do to a 51 pound kid right before she says, “I have to go to the bathroom,” and you’re like, “Duh” …?
Which was supposed to just be a funny kid story (she was totally fine, I swear!) but then, after reading this, it just wasn’t funny at all because all I could think was that my girl was telling me that she was full and that her stomach hurt and that dinner was done and I didn’t HEAR her because if she hadn’t eaten dinner in front of me, then she hadn’t eaten at all, right? Um, no.
I never asked her if she’d had a snack before dinner (a direct question might well have elicited that information) or even if she’d had a late lunch. No, I told her instead that her stomach hurt because she was fussing about eating. And that we all get tummy aches when we get stressed out and that she was creating a stomach ache because of all the fuss about the food.
So, to recap, instead of trusting my daughter to know her body, to tell me that her stomach hurt because she was full, I told her that what she was telling me wasn’t true – that she was WRONG about what she was FEELING. Hullo?
And yeah, it’s hard that she can’t just say, “No, Mama, it hurts because I ate a friggin crapton of bologna,” but knowing that, I have a responsibility as her Mama not just to listen but to HEAR her when she tells me what’s going on (in whatever way she “tells” me, even if it’s simply by pushing her plate away when she doesn’t have words) and to investigate further before jumping to conclusions that can only be made through the filter of what I know (and are therefore at pretty significant risk of being inaccurate.)
It’s my job to HEAR her when she tells me what’s happening inside her body, her mind, her heart; to send a message that I respect her and I respect what she’s telling me.
In other words, to trust her so that she can trust herself.
Because really, that’s where it all starts.
Thank you, Autisticook.