November 1, 2013
How hard it is to say what it was like
in the thick of thickets in a wood so dense and gnarled
the very thought of it renews my panic.
It is bitter almost as death itself is bitter.
But to rehearse the good it also brought me,
I will speak about the other things I saw there. (Dante’s Inferno)
I’ve seen this passage quoted before by others in order to explain what it’s like to grow up autistic and not knowing. It’s still by far the best explanation of that feeling I’ve ever read.
For Autistics Speaking Day this year, I want to say something unequivocally. And it’s incredibly rare that I feel qualified to just tell other people what they should do, but—if you are an autism parent—
Please tell your kids that they’re autistic.
Or have autism. Or Asperger’s Syndrome. Or are on the spectrum. Whatever. They can make their own choices about language preference later.
I don’t know your kid, so I don’t know when the right time or the right age is, or whether the best way is to have a talk and tell them all at once; or slowly, in trickles of information over time; or to simply always talk about it at home so they grow up always know.
However you tell them, just tell them the truth. It’s worth it.
1. They already know that they’re different. You can’t keep them from knowing they’re different by not telling them.
I knew when I was 3 years old. I could tell things were harder for me than they were for other kids. I could tell when I didn’t understand things that other people did (and when they couldn’t understand things that I did), that other people didn’t have as hard of a time explaining what they needed and getting it, that I didn’t know what I was supposed to do when other people expected me to, that I was expected to know things I’d never been told. That I didn’t know how to dress, that I didn’t get invited to parties. That things hurt my ears, that being touched felt wrong, that I was ignored by every single girl in my 5th-grade class except one for the entire year.
We have very good pattern recognition. It’s very hard not to notice, actually, when every single description of the world you’re given…doesn’t quite match up with your perception.
And being told by adults that I was wrong, that I was imagining it, didn’t make me wrong about what was happening; it made me not trust adults.
2. They deserve to know. They are entitled to accurate information about themselves.
If you had a kid who was gay or transgender, would you want or expect them to go the rest of their lives without the self-knowledge and self-acceptance involved in claiming those labels? Or without the ability to seek out information, history, appropriate health care, emotional support, and community with others if they wanted it? Why should those things be denied to an autistic kid?
(I wrote that and then realized that of course there are parents who would deny those things to an LGBTQ child. But I hope you wouldn’t.)
That someone is autistic is information about their brain, about their body, about their life, and they are the rightful owners of that information.
Most people I know who either found out their diagnosis, or received a correct diagnosis as a teenager or adult, were relieved to have the knowledge, but resentful of their parents having kept it from them. I know people who are glad not to have been diagnosed as a child—mostly because of the awful things it was considered acceptable to do to autistic kids when we were growing up, not because we didn’t crave the knowledge—but no one who was diagnosed and is thankful that the information was withheld. Most people I’ve known have been relieved to know that it wasn’t just their fault that they couldn’t just be like everyone else. To find out that there were other people with similar challenges who were okay.
3. Yes, labels can carry stigma. But it’s the stigma that’s wrong, not the fact that a word exists to describe some facet of how your brain works.
Not knowing the word “autistic” will not make your child not autistic, and it will not protect them from the mistreatment that frequently follows being autistic. I carried no label of a disability for most of my life, yet most of the same things happened to me as to people who did.
If what you really fear is that your child will be marginalized or mistreated for being autistic, then fight the marginalization, misinformation, bigotry, and dehumanizing stereotypes with us.
The burden of a stigmatized identity or disability label is difficult, but the burden of a void of missing knowledge about yourself, is much worse.
4. Knowing how to describe why things are harder for you is not “using it as an excuse.”
Knowing why certain things are hard for you (and other things are easier) is vital to good decision-making about how to use the resources of time, energy, and cognitive bandwidth that you have. And also to constructive thinking about how to come up with workarounds and good strategies for things that you want to learn to do.
That I didn’t know and couldn’t tell anyone why things were so hard for me, did not make them less hard. It did not make me magically able to just do things the way everyone else did. It made me a lot more anxious, guilty, resentful, and frightened to ever put myself in a situation in which I didn’t know if I’d be able to do what was expected of me.
Being able to recognize what’s a productive use of your internal resources, and what isn’t, is a vital skill when you’re seeking to live sustainably with a disability or major cognitive difference. Neurological boundaries don’t disappear because you lack the words to describe them. Disregarding or pushing past those boundaries is a useful thing to be able to do sometimes, but having to do it constantly and relentlessly is no way to build a life.
5. Having community is pretty much the best thing.
There’s a lot about being autistic that most professionals, teachers, or therapists don’t know anything about. Or even if they do, they can’t know what the internal, subjective experience is. So practically the only way to get perspective or help from someone who knows exactly what you’re talking about, is to talk to other autistic people. From certain sensory, cognitive, and emotional experiences; making self-care skills manageable; organizational strategies; making your habitat friendly and interdependent living; useful use of scripted language; overload, shutdowns; the reality of midlife breakdowns and loss of abilities later in life (because yes, this can happen at any time in our lives, not just early childhood); to differences in how we experience time, memory, sexuality and gender…to just being able to share obsessions and pleasures like cats and trains and things lined up in rows with mutual passion. It is really, really good to be able to talk to other autistic people about things.
Sometimes it’s just nice to talk to someone who talks or thinks like you.
I also have autistic friends who aren’t part of the online/advocacy communities, and that’s fine. Some people decide they don’t need or want that community in the same way, and that’s their decision to make. But they can’t make an informed decision if they don’t have the relevant information.
6. They will figure it out anyway.
We have the internet, and because autistic people write about our lives all the time, in blogs and books and poetry and song, they will stumble across something that accurately describes what their life feels like in a way that nothing else ever has.
At somewhere between 1% and 2% of the population, we are everywhere, and they’ll meet one of us, and someone will tell them the truth.
We are characters in books, movies, plays, and popular television shows. There are more and more chances that they will see themselves accurately represented, and put it together.
I had to figure it out myself (though not without help, but that’s another story). It took me 28 years, and it consumed me utterly. I could never get on with living my life in certain ways until I knew. I will probably spend the rest of my life trying to describe, trying to tell the truth, about what exactly that lack of knowledge did to me. I’m 31 now and I’m not even close.
Walking down the street and feeling like the world makes sense is a feeling I’m still getting used to.
Harder to express how that break becomes healed, a bone once fractured, now whole, but different from the bone never broken. And harder still to follow the path between the two. (Eli Clare)
…and when they do figure it out, and realize that you knew and withheld the information, both of you will have to deal with that breach of trust.
I’m thankful, at least, that my parents genuinely didn’t know, that they were actually misinformed and clueless, that even if I still think they were somewhat in denial, they weren’t lying to me. If they had been, and I had ever learned that they’d deliberately denied the information to me, I don’t know that I’d ever forgive them for that.
And while I’m as proud of this as anything I’ve ever done, it’s not something I would put someone through if I could help it. You can help it. There’s so much more of life to live than having to wrench the most basic facts about yourself out of the fabric of the universe.
October 28, 2013
In case you missed it, I have a recent post up over at We Are Like Your Child:
There’s a dynamic that occurs a lot in conversation, mostly with family, when I have to try to explain why I can’t just go do some given thing…because I have a communication disability.
In these conversations, people say, really often, something along the lines of “But you’re brilliant—you could do anything you wanted to!”
Here’s the thing: being brilliant and being disabled are not mutually exclusive.
October 24, 2013
Just been a little swamped with work….
August 10, 2013
somewhat very belated notice…
In the madness that has been the last month or so of my life (staged reading! Fringe show! month-long jury duty! new landlords tried to ignore collapsing ceilings! baby’s first Pride Parade!), it totally escaped me to put up an alert in a timely manner about the new(ish) collective blog that I’ll be a part of.
It’s called We Are Like Your Child, and it’s by mostly autistic but also other disabled adults. It’s about the reality of our difficulties, how we cope and problem-solve, and also our joys and how a life worth living and being proud of doesn’t have to be one free of hardship or impairment.
I’ll be posting there occasionally/as often as I can manage along with other co-moderators and guest bloggers, all of whom so far are awesome.
My first post, The Importance of a Niche, had to be posted by co-blogger Cynthia Kim because I’m such a fail of an Aspie stereotype that I couldn’t figure out how to sign in and post to a group Blogspot. This week’s current post–Wait, I’m Injured?!–is by Alyssa of Yes, That Too.
July 28, 2013
I do not think that Amy Pond is the Manic Pixie Dream Girl that you think she is.
I’ve been seeing this column linked, quoted, and excerpted pretty much all over the internet in the past couple weeks. And I wish I were having as positive a reaction to it as, apparently, basically every other woman on the internet is. But I’m not.
I was never a manic pixie dream girl. Though it wasn’t for the lack of a couple of people’s trying to make me theirs. Who decided everything about who I was, tried to treat me like I was that person, and then were continually confused and disappointed when I wasn’t. In fact, that’s true of a lot of people in my life, in various contexts, and not just romantically.
It’s the kind of thing I can see happening to Amy a lot, too. Not just guys with romantic intent, but people, deciding based on her looks and demeanor what’s behind her eyes.
And then it isn’t.
And so not many people stay close.
It’s not that she’s vacant or empty—it’s that so much has happened to her that has no possibility of being put into words that anyone else would either understand or believe. That has no analog or describeability at all within what most people in her world know and accept as the boundaries of reality.
She’s tried. And look what happened for her trouble. Four psychiatrists; being told all her life that she was making it up, or delusional, that what she knows to be true couldn’t possibly be.
Believe me about the wear and tear that exerts on a person’s psyche. (And I didn’t even have a Time Lord fall out of the sky into my backyard in a police box after my entire family had been disappeared by a crack in the universe.)
(Um, not exactly, anyway.)
Is it any wonder she doesn’t let much of her interiority slip anymore?
I have always, always experienced Amy as the protagonist of that entire story arc of Doctor Who, not as a function of what she was to the Doctor. Far from being “somehow immortally fixed at the physical and mental age of nineteen-and-a-half,” she always struck me as much older and sadder than she was supposed to be, perhaps even by her writer. She was always the point-of-view character to me. We saw her, and the world from her perspective, first and last in that story.
And finally, it was a world that I recognized.
That doesn’t mean that the framing of the story, and Steven Moffat’s (and therefore the Doctor’s) treatment of her aren’t sometimes often inexcusably patronizing or sexist. Particularly the ways in which people try to protect her by hiding knowledge or information about herself from her, in an inadvertent continuation of the way she had her very existential integrity violated by the effects of the crack in her bedroom wall.
Lots of people try to take Amy away from herself, with good intent or bad—Moffat, and the Doctor, her aunt and her psychiatrists, the Silence and Madame Kovarian. But she ultimately chooses the framing of her story that gets told to her younger self. She ultimately makes the decisions that take her away from the Doctor. The fact that she is put at the mercy of forces much larger than herself, that people who care about her respond rather imperfectly, that she does the best she can—with a stunning degree of endurance and courage if you really stop to think about it—under deeply irrational and frightening circumstances…I am unclear on how that makes her “the ultimate in lazy sexist tropification.”
That is shit that happens to people.
This is the problem with proclaiming that “the girl who waited” is not a real person. She is. I have been the girl who waited. It’s not a part of my story that I’m particularly enamored with sometimes, but it is intrinsically part of my story. It’s not flattering, but it’s true, and not because that’s just the way some man wanted it. I’ve been the girl whose life didn’t make any sense. I’ve been the girl whose memories didn’t add up. I’ve felt like the impossible girl.
Those aren’t just the titles of stories that happened to other people because that’s what girls are supposed to be. Those are stories that happened to me.
I’ve been told so often, in so many ways, that I wasn’t a real person, that I couldn’t exist in the world.
And oh, look, here’s another woman, doing it again. (It is usually women.) I guess to some women, being real is only for some women. And not for those of us whose stories are too inconvenient.
Even Amy isn’t truly a girl I could be, in various ways; it’s just that elements of her story helped me work out a few important things about my own. I watched “The Pandorica Opens” and could literally feel aspects of how the universe was supposed to work, turning and clicking back into place for me. (Even as the episode made so little logical sense that in trying, unsuccessfully, to untangle its plausibility in my head one day, I completely spaced out on my subway ride to work and missed my stop.) I had a Facebook conversation with a friend one night about how, when you’ve spent most of your life deeply disoriented with no clear explanation as to why, to suddenly not be disoriented in that way anymore is its own kind of disorientation. It’s one of the most deeply weird things I’ve ever experienced, and that’s saying something, and I’ve never, not anywhere, seen that experience represented more adeptly than in Amy’s episodes of Doctor Who. (And I very much think of them as Amy’s episodes.)
You know how people sometimes write letters to their childhood selves? I could never do that. I didn’t know what I could possibly say to that little girl. No words would form around the things I wanted her to know. I just couldn’t, somehow, connect the world I know, and the world she lived in, and the things she did and didn’t understand at the time. The truth was just too much, too fractured and incomprehensible a thing to try to figure out how to lay on that girl. It felt like there was some kind of glitch in my timeline…in my own understanding of how I’d even gotten from there to here.
But when the Doctor closed Melody Malone’s book at the end of Amy’s story in “The Angels Take Manhattan,” I cried and cried for a long time without being able to say exactly why. And then I did understand, and then I did know what needed saying to that girl. And I could say it.
Amy means a lot to me precisely because I couldn’t ever be the story that other people wanted.
Neil Gaiman once wrote “…the shape of reality—the way I perceive the world—exists only because of Dr Who,” and while that would be an over-statement in my case, Amy’s story finally reflected to me a lot of the emotional shape of my own world, and some of the joints and hinges that have held it somewhat inexplicably together.
July 7, 2013
A lot of times in the summer, the heat makes me too lethargic to eat, or at least to do the work required to eat, much more than cereal with blueberries. (And I go through blueberries like I’ll never see them again in the summertime.) But tonight I was feeling a little creative and decided to make up a real meal.
This is actually only a slight variation on a sauce I’ve made before, and the thing I like about it is that it’s hard to overcook. You probably could…but I haven’t managed yet.
About 1/3 stick of butter
About 1/4 cup heavy cream
About 1/3 cup white wine (I used Chardonnay, because that’s what Whole Foods had for $2.99 a bottle.)
3-4 baby bella mushrooms, sliced
Half of 1 large shallot, sliced
Pinch of cardamom
Dash of salt
A few leaves of fresh basil
Melt the butter slowly over low heat and add the shallots. Cook till softening and fragrant, and add the mushrooms, and cook they’re soft and fragrant, too. Add wine, stir it well into the butter, and one or two of the basil leaves, and cook till they’re wilted.
Add the cream, stir well into the winey butteriness, and cook and stir gently until it’s thick and bubbly. Add a pinch of cardamom, just a dash of salt, and as much black pepper as you want. (I like black pepper…a lot.)
(This is also where I stirred in about a tablespoon of flour to get it to thicken up a bit.)
I poured it over a pork chop and halved zucchini that I had grilled on our grill pan, and garnished with the remainder of the basil leaves.
And then I sat down to start watching Community…only to find that it is not available on Netflix instant. Bad planning on my part. But the saucey pork chop was just as good with Supernatural. I have leftover wine and cream, and am contemplating something similar but involving walnuts and berries later this week….
May 25, 2013
I was working on a film shoot a couple weeks ago, and standing around on a break one day, somehow I got to talking with our costume designer and the 12-year-old member of our cast about how much better Nickelodeon shows were in my childhood than they are now. While I was a little embarrassed to have almost no idea what is even on Nickelodeon these days, he was a connoisseur of vintage Nickelodeon, and we wound up talking about shows like Clarissa Explains It All, Doug, Rugrats, Salute Your Shorts, Are You Afraid of the Dark?, You Can’t Do That On Television, and The Adventures of Pete and Pete.
And one of the things we realized, in trying to figure out why those shows were so cool, and felt so good to watch, even though they were in some ways ridiculously wholesome, was that they managed to make you feel like they were always firmly on your side as a kid.
Although almost wholly non-objectionable in any way, they weren’t family shows. They were kids’ shows. They weren’t so much trying to teach any lessons, or make your parents happy, as they were dealing with the world the way that kids actually have to deal with the world, with all of its petty injustice, anxiety, and ludicrousness. There was lightness in the situations, but there wasn’t trivialization or mockery of kids’ problems. Adults were not always ultimately right, or even good or well-intentioned like they were in other network family shows.
And as I thought more about it, I realized something else that day. Those shows weren’t just on the side of kids…they were practically always, as far as I can remember, on the side of vulnerable kids, underdogs, and oddballs.
Compare, for instance, the way Sponge is portrayed in Salute Your Shorts compared to Screech in Saved By The Bell. When Sponge is called names and pushed around and valued only for his huge memory for random facts, it is actually wrong. Or Sam the weird neighbor in Clarissa and Skeeter the weird sidekick in Doug compared to Kimmy the weird neighbor in Full House. The bullies and jerks were the bad guys in those shows, and while you’re still supposed to have compassion for those characters in their own way, they are the actual antagonists of those worlds and you are not supposed to approve of their behavior and join in laughing at their victims. There weren’t characters who were there to be ridiculed.
Heroes and protagonists of Nickelodeon shows felt dorky and inferior…and it was okay.
And I was thinking about it some more as I was going through an old journal this week (which I almost never do), and re-reading an entry about realizing that the things I’ve tended to really love–music or books or TV shows–were things that made me feel like a person. Things that I liked okay were things that at least let me feel like a person.
Things that I could never manage to like much at all, even when everyone else around me loved them, tended to leave me feeling like I couldn’t laugh at the characters I was supposed to be laughing at.
Nickelodeon shows never did that. And while I was warned all too often that the amount of TV I watched as a kid was going to rot my brain, I’m starting to suspect that the more subtle lessons of those shows may actually have been among the most quietly but deeply impactful sources of strength to follow me into adulthood.
(And then there was this. How many things in life have you really been more afraid of than that? The top comment reads “This is why we 90′s kids are so intact”…and I think she may not be wrong.)