Diary’s Facebook status – yesterday
There are studies on what I’m about to write. Lots of them. There are scores of posts out there on the topic, undoubtedly far better written than this one. Certainly they are better referenced and include links to, ya know, sciency stuff — studies and the like.
I’ll do my best to include some of that later, but I’m not writing as a scientist, or a doctor, or even a journalist. I’m writing as a mom. A mom who has begun to understand that, in the case of my daughter, there’s a fatal flaw in the autism zeitgeist. And it’s been getting me, and I dare say a lot of parents, into trouble.
It took a while for me to recognize that there is often a significant disconnect between what I think I see and what Brooke is actually experiencing. I tend to refer to it as viewing her behavior from the outside in rather than empathizing with her experience from the inside out.
For example – if I can’t ‘reach’ Brooke – if she’s not apparently ‘responsive’ when I call her (in the way that I, based on a combination of my neurology and 42 years of social conditioning, assume that one would respond when called), when she doesn’t ‘react’ to outside stimuli (in a way that I, as a neurotypical person, recognize as a ‘reaction’), it might seem reasonable to conclude that she is unaware of what’s happening around her.
Not so much.
I can say with some confidence that in nearly every incidence of Brooke’s withdrawal, her ‘lack of recognizable reactions’, as it were, is based not on a lack of engagement, but on an overabundance of it. This is where it gets tricky. Bear with me though, cause it’s also where it gets really, really important.
As an autistic I would like to encourage all the people who think and say autistics are in their own world to reconsider. Please know, that contrary to popular belief, autistics are not in their own world.
The fact is that we all share the same world. My experience of our shared world is much more intense than yours seems to be. My sensory system is often overwhelmed by the amount and intensity of sensory information it takes in.
In addition, I feel your emotions more intensely than I can tolerate. Many times I cannot look you in the eye as I get too much emotional information when I do this. Sometimes it is painful. It shuts down my system.
I nodded so hard as I read those words, my head nearly flew off my neck. Before I’d even finished the post, I’d linked to it on Facebook with the words, “THIS. THIS is my kid.”
I’ve talked at length about the fact that Brooke has made it very, very clear that she does not lack emotional empathy. She has made it equally clear that she does she doesn’t lack environmental awareness, despite the arguable periodic evidence to the contrary. Rather, she experiences a dramatic surfeit of both. And often, hyper-focusing on one particular thing to the apparent exclusion of everything else or giving the appearance of tuning out entirely are the only life rafts that can save her from drowning in the roiling ocean of sensory overload.
To look at her in those moments, the ones in which she’s playing defense in a world that’s grown far too intense for her to process, it may very well appear that she’s not present or not engaged. Please note the italics; there’s good reason for them. Throughout her early childhood, I wrote about the moments in which I’d lost her to Brooke-land, in which she’d become unreachable, the times I thought that we were no longer connecting.
The things that I tried to do in my misguided attempts to bring her back to me in those moments — the times I went chasing her eyes as though I were on some valiant mission to save her from oblivion — they break my heart to remember now.
Because … THIS ..
I feel your emotions more intensely than I can tolerate. Many times I cannot look you in the eye as I get too much emotional information when I do this. Sometimes it is painful. It shuts down my system.
THAT is my child.
I see it every day, now that I know where to look. I see her taking it all in, the searing emotion, the too big, too much, too bright, too bold, too loud — the raw, intense, jagged-edged noise of the world — with no hierarchy, no categorization, no filter — just noise, all at once from every angle. And I watch her body try to hold it all until the mere fifty-one pounds of her ten-year-old being simply can’t contain it anymore and it’s threatening, threatening, threatening to boil over and spill up and out, the burning liquid anxiety now scalding her skin, the toxic steam of fear choking her breath and taking her words and pushing her further and further to the limit until she simply has to find a way, any way, to say, ” No more.”
And in that moment, that moment when the input is boiling over and it’s just too much, trying to force interaction is tossing gasoline onto an already raging internal fire.
It’s giving her, no, it’s forcing upon her, the exact opposite of what she needs.
She is not unengaged with her world. She’s seeking refuge from being painfully over-engaged.
These realizations are hard. Facing them head on sucks. They come steeped in guilt and marinated in feelings of inadequacy. But, well, parenting is hard. Any and every kind of parenting. And parenting a child whose experience of the world is radically different from our own requires a whole different kind of work.
There are no instructions. There’s no manual. And a lot of what we think we know is not only useless, but destructive. Whether we realize it or not, we interpret our children’s behavior (and, if we believe that behavior is communication, then by extension we interpret what we believe they are trying to tell us) through the filter of our neurotypical bias. If we’re really going to effectively and respectfully parent kids who are not neurotypical, then it stands to reason that we’ve got to cut that out.
How? Well, I’d argue that a good place to start is recognizing that unresponsive may very well mean overly responsive and overwhelmed and that nonreactive may well mean reacting internally.
Because if there’s one thing that I’ve learned over time, it’s that it’s flat out wrong to assume that because I don’t relate to the way in which my child is interacting with her world, she’s not. Not only is the assumption wrong, it’s the opposite of right. The opposite of truth. Of her truth — that she is not just different, not just ‘not less’, but sometimes, often, she is more.
As promised, some links for further reading / viewing. Please feel free to add more in the comments.
Amanda Baggs In My Language
Judy Endow “He Is In His Own World” … Is It True?
Rachel Cohen-Rottenberg On The Matter Of Empathy
Nicole Nicholson Glass and Concrete