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.
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.
May 2, 2013
I meant to write this even before I knew that today (er, *cough cough* yesterday *cough*) was Blogging Against Disablism Day. Hey, serendipity!
I saw this on Facebook, shared on a friend’s page, a few days ago:
Hey, my name is Emily. I’m 19 years old and I have high-functioning autism. I was diagnosed when I was 2 1/2, when my parents noticed that I stopped talking and developing normally. I never wanted to be snuggled. Loud noises scared me badly. I would parrot everything my parents said. I didn’t like people in general. I’d have a hard time sleeping at night. I was a very picky eater, and didn’t like things if the textures weren’t right. I also didn’t like it when things would suddenly change. Once I was diagnosed, I was put into speech and occupational therapy right away. My therapists thought that I would never be able to go to a mainstream school, learn how to drive, keep a job, or get married. I proved them wrong. I was put in an IEP program when I went to an autism preschool at 3 years old. I learned how to read when I was 4. I was good at remembering things with details. By the time I turned 5, my teachers ran out of things to teach me that were in their curriculum because I picked it up fast, so they started teaching me things that I would learn in kindergarten.
Now I’m in my freshman year of college,I changed my major this past semester to studying special education, and not social work. I work part-time in a call center for an anesthesia medical billing company as a billing specialist. I stopped being on the IEP program when I was in 9th grade. I have a driver’s license, I graduated high school with a 3.2 GPA, I’m engaged to be married next fall to an amazing guy, who loves me and accepts me for who I am. I still have some OCD tendencies, and I still have some texture issues when it comes to certain foods. For the most part, people can’t even tell that I have autism.
For you parents out there with children on the spectrum, don’t give up on them. Help them reach for their potential. Look for the talents that they have, and help develop them. My parents didn’t give up on me, and I’m forever grateful for them, because I get to live a normal life. I am getting married July 5th.
I saw your post on Facebook, through a friend’s page. (I’ve removed your photo and last name.)
My name’s Emily, too. And, with some notable exceptions, which we’ll get to, I could’ve written large chunks of your story.
You’ve done a lot, and you should be proud. But your note left me worried and uneasy for you more than anything else.
I never developed normally. But I was misdiagnosed, and there were no IEP’s when I was in school anyway. I don’t know if there were special schools in our area, but if there were, from what I’ve heard from friends who were in special ed, nothing leads me to believe that they would’ve been good places. Speech and occupational therapy existed, but it had been decided that I was just shy and stubborn and didn’t want to talk, not that I was in fact having serious language problems. Far from being told that I would never do things like go to school, live by myself, or get a job, it was just assumed that I should be able to do everything that everyone else did, and so no one thought that they needed to teach me anything. I had to just figure it out. It was fly or die. And that much I knew for sure.
I read a lot. Thankfully, my first grade teacher was good at teaching writing, and I loved it. I spent a lot of time outside. I learned to drive. I was in gifted programs throughout school. I graduated from high school with a 3.9 GPA. I was captain of my scholar bowl team, copy editor of my senior yearbook, and editor of the school creative writing magazine. I graduated from college with honors and with two degrees. I learned to stage manage and held office in the college debate society. I worked in a campus biology lab, for the local community theater, and then as a barista for several years. I moved to New York with friends, and I work in theater full time now.
And for most of my childhood and adolescence I was in a desperate race to prove, both to myself and others, that I could do anything that I needed or wanted to do, because I was so (reasonably, as it turns out) terrified of winding up not being allowed to live my own life.
I’m hugely proud of a lot of what I did. But I also did some fairly horrible things to myself, and it took me a long time to realize that the fact that I had to wage that war in the first place was wrong.
Recently I was out with a friend, and she said “Your education sounds like hell.” I had to agree. It was, and no one had ever said something like that before, or told me that yes, it was all real. Most people trivialized it or called me spoiled or oversensitive or assumed that because I was smart, it was all easy for me, not that it was war, day in and day out.
Sudden noise, visual over-stimulation, and unwanted touch still hurt me. I’m still very sensitive to texture in my food and clothing. I still walk on my toes, I have a strange gait and an accent that people can’t place. Frequently my emotions don’t connect to my language abilities very well and so there are things I can’t communicate. I worked really hard at developing speech, organizational, and motor planning abilities, but they can still be overtaxed, and I can’t go around expecting to be able to function in the ways a non-autistic person would take for granted, or to push my boundaries for extended periods of time.
And none of that is a reason I can’t be happy or productive or ambitious. It does require that I honor how I’m actually built and how I’m not.
I’m glad that I had people, who I know and who I’ve never met in person, in large ways and small ones, in words and not in words, deliberately, and not so much so, to tell and show me that it was okay to be autistic. That it isn’t wrong. We’re not wrong, to be this way. That we’re okay. That we’re supposed to be here.
I’m glad for all the writing and information from other autistic people that helped me put it together that autism is not what we can and can’t do. It’s not how we’re defective or inferior. It’s how we’re configured to process information, to feel, perceive, and use language, to learn and grow differently from most people, and there’s nothing wrong about that.
I don’t take pride in the fact that a lot of the time, people can’t tell I’m autistic, because all that means is that most people wrongly equate the condition of autism with prejudices about what we’re not supposed to be able to do, or with bigotries about us being incapable of empathy, love, warmth, or friendship.
These days, most people know that I’m autistic. Partly because I write and talk about it, but partly because both my ability and willingness to expend energy on suppressing physical signals of autism have gone away. I’m glad that I’d already read some of Amanda Baggs’s and Rachel Cohen-Rottenberg’s writing, so that I knew what was happening when it started happening to me and didn’t panic or blame myself. My brain gives me fewer choices now about how I can and cannot abuse it. I had to start letting myself feel what I feel and need what I need again.
And I’m better off. I mean that. I’m healthier. I sleep better. I feel like a whole person again. I feel like a real person, like I fit in the world again. It’s an incomparable experience, to know that you belong in the world exactly the way you are, that no one can take that away from you again.
And the other thing? That whether or not anyone can tell you’re autistic has anything at all to do with what kind of opportunities you have, or what kind of respect or affection you get from other people?
That’s wrong. That’s bigotry by definition. If you would be worse off if other people were able to tell that you’re autistic–regardless of your actual, individual character traits, qualities, abilities, and intelligence–that doesn’t mean there’s something wrong with being autistic; it means there’s something very wrong with how other people see us.
By all means, we should tell parents to look for and nourish their children’s strengths, and believe in their potential. But not giving up on your children doesn’t mean putting a premium on them having the most apparently normal life possible. Normal and good, or worthwhile, or satisfying are not synonyms. My life is hugely different from yours. Other autistic people will have lives that look very different from mine. And that doesn’t mean that they’ve failed. That doesn’t mean that they or their parents did it all wrong. It means that they’re different, and made the best choices possible for themselves, and that fighting their autism or any other aspect of their true natures into the ground was just not on the priority list when compared to learning things, or spending time with a topic of obsession, or just enjoying life for what it is.
What we did–to survive, to grow up, to have our own lives–is not wrong. But a lot of the ways in which we were forced to were.
I think we’re capable of making a world where no one’s success or acceptance depends on how well they manage to look like something they’re not. We all deserve better than that, and so do you.
March 7, 2013
I am often not a big fan of the language of privilege. While I have found it a useful concept and thinking tool, and one that I tend to think people should take the time to understand…I’ve seen it turn already highly-charged discussions rancorous. Particularly when both “sides” in a discussion are in fact vulnerable in some way. The word has such a negatively loaded connotation in its everyday usage that it can turn unproductive quickly when participants aren’t familiar with its meaning in a social justice context, or legitimately feel vulnerable, overtaxed, or externally threatened…only to be told that they may in fact be privileged. I try to stay away from it. I usually think that there are better ways to explain things that don’t send people straight into self-defensive mode.
So I was mildly surprised, and humbled, last week when a college friend on Facebook thanked me for alerting her to her own state of privilege, in response to a link I’d posted about a recent event, in the sense of privilege being a circumstance in which you never even had to think about how an issue affects you.
You may have heard about this: Somebody noticed and blogged about the fact that if you Google-searched “autistic people should,” or “autistic people are,” the autocomplete search suggestions–generated automatically by the most searched phrases completing that sentence–were all hate speech:
In response to the attention from bloggers who organized a flashblog to counteract those results, Google announced that it would revise its search algorithms to more effectively screen out death threats from the top suggested search terms. (My contribution was here.)
There’s been a lot of discussion of privilege in the interactions between autistic bloggers and autism parent bloggers lately, which I’ve mostly stayed out of (and characterizations of war between the two groups, with which I mostly don’t agree).
But on a whim, I tried something. Try it for me now if you want.
Go back to the Google home page.
Type in “parents of autistic children should,” “parents of children with autism should,” “parents of children diagnosed with autism should,” or “parents of autistic children are,” and don’t hit enter. Let autocomplete do its job.
And see what the suggestion for that query is.
Here’s what I got:
That is the magnitude of the difference between the assumptions that society makes about you, and the assumptions that society makes about us. That’s privilege.
You may feel like autistic people, or other people who don’t know what’s like to parent an autistic child, judge you too harshly or unfairly, make ridiculous accusations, or hold you to impossible double standards. There are times when you
may be probably are right. That there is a privilege differential does not mean that you can’t be hurt or bullied or wronged on an individual basis by someone of a less privileged group.
But society at large doesn’t wish you would just go away and die. Major charities and research organizations don’t actively seek ways to make that happen. There isn’t a federal law entitled the Combating Autism Parents Act.
(There is a federal law called the Combating Autism Act. Think about what that really means if autism is an inextricable part of your psyche.)
Privilege is not about parents vs. autistics. It is not about which group of us has had it harder, or that we could somehow count, add up, and compare the number of strikes against us. It is not about how we feel about you or you feel about us or whatever personal wrongs or misunderstandings we might have done each other.
Privilege is about how the world at large sees you, and how the world at large sees us–and people like your kids–and the consequences of those conditions in who gets listened to and how. And people–including parents of autistic people–are way, way more likely to get listened to seriously when they say that the world would be better off if people like us didn’t exist any longer, than when they say that we are acceptable, that we are not a tragedy, that the value of our lives is not best measured in terms of our financial burden on the country…or when parents like you say that you love your kids the way they are and only want their happiness and acceptance.
Privilege is the poisoned water that we’re all swimming in; it’s not about laying blame for who did the poisoning. We all get wet; none of us can help but be affected in our views and the way we live our lives and interact with others…that doesn’t make it the fault of the people who aren’t the targets of the poisoning. But we can all help unpoison the water.
January 30, 2013
A friend sent me a link to this Radiolab episode (“Voices in Your Head”) from a couple years ago in response to a different inquiry altogether (having to do with certain experiences of schizophrenia and auditory hallucinations), but it was startling to me in an unexpected way.
Jad is talking to developmental psychologist Charles Fernyhough about how he believes children learn to think by internalizing external verbal processes:
CF: I don’t think very young children do think.
JE: Like, think, period?
CF: I don’t think they think in the way that I want to call thinking.
JE: What he meant, is that thinking as he defines it, is just words sounding silently in your head, and before you have those words in your head, you can’t think.
Early in the episode, Fernyhough asks us to think of a parent and child solving a jigsaw puzzle together, and the back and forth dialogue between them in which, he posits, a child learns to think. The “thinking” here, he says, is happening in the interaction between parent and child, and not internal to one or the other at all. It’s by learning to make this verbal process internal, that we become thinking people, he says. “If you watch any kid with their parents, anywhere in the world, doing this kind of thing, you’ll see them thinking together,” he tells us.
Immediately I thought, “How insulting to non-speaking or non-verbal people,” or even to people whose primary intelligence is not linguistic, but spatial, movement-oriented, artistic, or musical?
But then I was even more stunned. Wait, I thought…Is this possibly why so many people cannot imagine that someone who doesn’t talk doesn’t truly think? Why people are so highly skeptical of the genuine intelligence of someone who can type but not speak? Because most people do, in fact, learn to think by speaking and can imagine no other way?
I never did engage in the kind of mutual narration described, or individual narration about what I was learning to do; being forced to engage in that kind of communication while trying to understand or carry out a task actually badly impedes my ability to do it. I have the damnedest time getting people to understand that I’ll be better off if they show me something once or twice and then leave me alone to get comfortable with it, rather than hanging over my shoulder and re-explaining and correcting until I’ve got it perfectly, which will never happen under those circumstances. It’s also one of the major reasons why I did so badly in cognitive-behavioral therapy: Because having to speak severely impedes my ability to think. I speak by translating and selectively externalizing my internal understanding; I don’t think by internalizing what’s external.
Even my memories of learning to write are hardly verbal at all; they’re very experiential, visual, and physical. I remember the pattern of it becoming intuitive more than the words themselves.
Frequently in my line of work, I find myself defending the intelligence of dancers to other people, explaining that you just can’t expect them to be able to communicate much of their intelligence verbally. It’s just not how they work best. It’s not the framework in which they’re approaching the world.
But look at their intuitive grasp of physics, space, movement, group dynamics, and the capabilities of the human body. That is just as much intelligence as anything you can measure on a standardized test, and it never stops being astonishing to me.
Or, in college I knew an art student who reported that when she’d been painting alone for a long time, she had a really hard time switching back over into speech…like if her roommate came home unexpectedly and said hello. I have a really hard time buying that in those preceding hours, she wasn’t thinking at all just because she wasn’t doing it in words, but in color, shape, and movement.
It’s incredibly arrogant, too, the presumption that because this is how you, or even most people, learn to think about the world, that that is how it must be done, and if it wasn’t, then those people aren’t really thinking at all…that thought itself cannot occur in a frame of reference radically different from the one that most people take for granted. Or that nothing of significance could be understood if it can’t easily be translated to speech or verbal language. And that’s not even taking into account all the conditions by which someone may in fact have a very verbal understanding of the world, but not be able to physically speak for whatever reason (like oral motor apraxia). The prejudice is to assume that they cannot think or understand, rather than to look for ways that they could make their understanding known.
What I’m starting to think is that it’s not the autistic who have a theory of mind problem.
I’m at my favorite coffee shop again, like I usually am on days when I don’t have to be at work till evening. Patrons are actually sitting outside this morning, because it’s sunny, calm, and 45 degrees instead of 10. A woman smoking at the table nearest the door pushes her last fragment of baklava—shimmering with honey—to the edge of the table for the sparrows to share, and as one alights on the edge of the table to seize it, the sun for just a moment shines through its widespread wings, turning both bird and pastry a translucent luminous gold…like the bird was solidified from light itself.
And though I write poetry, there are no words I can find sufficient for the sight…not really. Even the above paragraph feels and sounds klutzy and contrived compared to what it actually looked and felt like.
If I had even fewer words than this to describe it to you, would that mean that I didn’t truly see or feel or understand that moment? I don’t think so.
December 5, 2012
Two major considerations of autism and the place of autistic people in society sort of collided in the news media this past week. First, the New York Times’ Sunday Magazine ran a long piece, “The Autism Advantage,” on a European company, Specialisterne, whose mission is to find supportive employment opportunities for people with Asperger’s Syndrome in the tech world. And second, the House of Representatives held the first hearings in a decade on rising diagnostic rates of autism spectrum disorders.
In both forums, it quickly became apparent, as it often does, that by having any ability to take an active role in our own lives or discussions about us, our right to do so is discounted by many. The comments section of the Times article quickly exploded with criticism that because some autistic people are too severely affected to ever hold jobs, the article was irresponsible or trivializing, that the employment concerns of the so-called “high-functioning” had no place in discussions about real autism.
And the originally slated panel of witnesses to Congress included zero autistic people of any stripe. When Michael John Carley and Ari Ne’eman were added in response to pleas from the advocacy community, complaints resulted that two such “high-functioning” men couldn’t truly represent autistic people, or did so inadequately because their testimony didn’t focus on the need for a cure for “lower-functioning” people.
Effectively, that because some autistic people have severely compromised communication abilities, we should not have been represented, in a Congressional hearing about the federal response to our existence, at all.
And I’ve lost count of the number of times in online discussions when I’ve been told that I’m nothing like someone else’s child, couldn’t possibly understand what their child goes through or have any idea what it’s like to be their child…before they list off a litany of experiences that sound a whole lot like my own childhood.
(Or sometimes not. Sometimes someone else’s experience with the autism spectrum is actually radically different from mine. It’s called a spectrum condition for a reason, and we know this, better than anyone.)
I may never be able to convince these people that my experience has anything in common with their children’s. I know that no single human being can ever truly know the experience of being another, but I also can’t convince myself that I have no place standing up for those kids.
Because I remember getting the message so often, in so many ways, that there was no place for me in the world as I was, that I was never going to make it in “the real world.” That I wasn’t going to be allowed to make it if I wasn’t going to do a better job of pleasing others.
I remember not being able to look the way I was supposed to, talk the way I was supposed to, dress the way I was supposed to. I remember not being what anyone wanted.
Because my heart broke for your kids when Michael John Carley asked the nation to remember, when we talk about the autistic, that the vast majority of us can hear and understand what you say about us—and a gallery full of people behind him angrily shook your heads “no.” Because I remember being told again and again that I could not be perceiving what I was perceiving, and being told that I couldn’t or shouldn’t be able to do what I knew I could.
Because I remember having no one who spoke or understood my language, and losing hope that I ever would. I remember having no one who thought that the world as I experienced it was worth respecting or understanding remotely enough to be any help to me.
Because I remember the constant implication that the ways I was being treated were acceptable because the way I am was not acceptable.
These things wear you down, day after day. The memory of it all wears on me still. I want better than that for your kids. I think we can all do better than that for your kids. I’ve cited before, and probably will again, the quote from Adrienne Rich:
When someone with the authority of a teacher, say, describes the world and you are not in it, there is a moment of psychic disequilibrium, as if you looked into a mirror and saw nothing.
I think that all of your children deserve to see a world with them in it, and belonging in it.
And far from our abilities disqualifying us from that role, I believe that our communication abilities and everything that we’ve done and learned for ourselves are all the more reason why we have a responsibility to stand up for kids like yours. If I were to decide that because of the gap in our apparent abilities, that they and I have nothing whatsoever to do with each other….If I said “You’re right; because I can speak and write and have a job, and your child might not ever, then his rights, dignity, and well-being have nothing to do with me,” then I really would be guilty of the accusation leveled against activists so often–that we care nothing about the well-being of the more severely disabled.
But I don’t think that’s true.
November 1, 2012
A couple years ago, in one of the most misbegotten autism awareness campaigns ever, named Communication Shutdown, people were asked to refrain from using social networking for one day, November 1, to simulate the communication difficulties of autism spectrum disorders, and that for everyone who pledged to do this, a donation would be made to charity.
This was a bad idea, because a whole lot of autistic people rely on social networking for communication and socialization, so getting people off the internet would actually be seriously counterproductive for the very people this was supposed to be helping. And immensely silly, because being without Facebook in no way approximates the experience of being autistic.
I remember life without Facebook. They’re not the same thing. Not even a little.
In response, Autistics Speaking Day was founded, to use the internet to amplify our voices, rather than shut them down. This is my first year of participation.
One of the things that most enrages me when parents write about their child’s ASD diagnosis is lamentation that they’ll never be normal…as if normal is some kind of unit of measurement of what a life worth having is, above joy, integrity, authenticity, curiosity and passion, love, usefulness, or perception of beauty.
One of the things that breaks my heart is when they only ask “will he be happy?” Because of course no one can say, and though I can tell you lots of things about what it’s like to be this, I can’t either.
I don’t think this is my most elegant writing, but it might be the best I can explain. I hope it’s whatever comfort it can be.
It’s a sparkling, cool morning, right before fall. I’m watching a little brown sparrow perform some kind of courtship dance and song on the branches of a honey locust tree, right outside of my favorite coffee shop’s window. It’s a tiny, absurdly beautiful thing, and I’m pretty sure I’m the only one who notices it at the moment. Which I like.
I am happier than I thought I’d ever get a chance to be. It wasn’t always this way.
I live in a city I like, with people I enjoy. I love the job that I do. I’m a proud member of my union. I earn a living in the arts—something that people tell you that real people don’t do. I feel badass for this. I’m doing something that I truly want to be doing with my life.
I have good friends, and I have more good friends than I once even imagined possible.
I love walks, museums, food, books, writing, music, traveling, Doctor Who. I yell at the radio a lot during election season.
I actually feel like I’m living the life I was meant to. I feel real in my own world for the first time in a long time. It feels very strange, and very, very good.
A few weeks ago I was running a piano recital, and a little girl who takes lessons where I work got bored of listening and snuck backstage to talk to me. She makes me laugh and I don’t have the heart to tell her she’s not supposed to be there. We talked about books, and the presidential election.
Sometimes when I’m opening up the theater, or in the middle of a performance, or putting pianos away for the night, I get this incredibly eerie, but wonderful feeling of “This really is my life, and it belongs to me, and it’s where I’m supposed to be.”
Last night I went for a walk, and found, in the underbrush of the park that borders my nighttime walking route, a raccoon scavenging food for three feral kittens in the aftermath of the hurricane. My jaw dropped when I realized what was happening. While I watched this scene, a bat flew right by my head, twice. I could hear its navigational clicking. I can’t believe that most people don’t see and hear things like this.
Our rent went up again this year, despite the apartment actually being in worse shape than when we moved in eight years ago.
Our bathroom is disintegrating from water damage from a leak from the unit above us—again—that the city is incapable of forcing the landlords to fix permanently. And the mice are positively indestructible.
I spent a couple months recently putting groceries on my credit card. One difficult, underpaying job has followed another for most of the year. Then my computer needed repairs I couldn’t afford but couldn’t go without.
I just re-qualified through the union for health insurance I can’t really afford either and may lose again in six months anyway.
I grew up being told that if I got a good education, I’d be comfortable and secure. But the security that was supposed to be the predictable, deserved reward of this much work is nowhere in sight.
No one knew to tell me that I’d go insane in a job in which I didn’t have to work with my hands. No one told me when I was growing up that there were countless ways to succeed in this life, countless right ways to live. That you’re not rewarded with happiness for conformity to a path you weren’t actually made to follow. That authenticity is a good bet. And good thing, too, because it was the only choice I really ever had.
Other people my age have houses, children, backyards, dogs. It is hard to watch this happen and know I may never be able to have these things. But then again, this leaves me in not so different a position from that of a lot of people in my industry.
I do want a romantic partner, but don’t know how capable I am of sustaining such a relationship. I want a family but doubt my ability to support one. But if I never get married and have children, that will make me sad; it won’t make my life an unlivable tragedy.
I would like to live somewhere else, sometime, but worry about there not being enough work to support even myself.
And I’m scared for the future. Of health problems I can’t afford. Of ever losing my self-determination. I don’t pretend that I’ll ever be able to retire in true comfort or security. I don’t even let myself think about such a thing.
All of the above is true. None of it cancels out any of the rest of it. I love my life and I couldn’t wish for a different one.
And sometimes I go to bed at night thinking “God, I don’t know how long I can do this.”
But security isn’t happiness. Normality isn’t happiness.
Things might not be this hard forever. And they really might be. And either way, I believe in taking joy wherever you can find it. And that being who you are is worth it. That everyone belongs somewhere. That the world is full of so much beauty you might not believe me if I told you.
My coffee shop is across the street from the Cathedral of St. John the Divine. You can see the parish building through the front windows, and I love the way the sunlight filters through the leaves of elm and apple trees and plays across the carved stone façade, faces of saints, angels, and monsters the old oak doors, the copper and frosted glass lanterns.
I could sit here and drink coffee and watch the light move across the cathedral buildings all day.
But I have promises to keep.
December 27, 2011
I think I never intended to write this post. It’s personal, and it’s a hissy fit, but one I felt a certain responsibility, the more I reflected on it, to transcribe.
I was diagnosed with Asperger’s Syndrome last year, which most of you probably know because I talk about it on Facebook enough, because I decided that it was part of my life that I wasn’t going to make any particular effort to hide, because I had nothing to be ashamed of. (I’d known the truth for several years before I sought out a correct diagnosis; a few people knew, but I didn’t talk about it much, for fear of a lot of things.) I really have no idea what people think of me as a result, because I stopped concerning myself at a pretty early age with what people think of me. Because living in thrall to the opinions of people who don’t have to live your life is no way to live at all.
Anyway, so I’d started to think of it as old news that I was autistic. I’d started to settle in to living as a whole person, without an emotional double life. Then last night, I was rather emphatically asking my mother not to describe a young relative, currently in the process of being evaluated for autism himself, as not having a personality, because such language is often used to justify all kinds of mistreatment and prejudice against us, besides not being true.
“But you’re not autistic.”
Which is where my brain froze up. Because honestly? I don’t know what else I am. Everything comes home to that. Everything. Before I understood what AS really was, I didn’t know what I was at all, except for lost and completely alone in the world.
“I don’t think of you as really autistic.”
This is everything I didn’t have it together enough to say at the time. This is what I’d say going forward:
If you can’t see me as autistic, then you need to revise your view of autism.
I am “not like that kid” you saw who runs around screaming, or who can’t communicate at all, because I grew up. And because we’re all different, because we’re all different people, who cope with unique profiles of challenges and gifts in individual ways. I am “not like that kid,” because, to be perfectly literal, I am not that kid.
We are as unique as the stars. They say autism is a spectrum, but I don’t think that really describes its variety and complexity well. It’s not a simple progression from mild to severe. I often say it’s more like a constellation, or galaxy (which, another blogger pointed out to me today, has the added metaphorical benefit of being a 4-dimensional construct; it changes through time for every person as well). There are people with far more severe problems with independent living than I have, who are smarter, better writers, incredible artists or just incredible people.
I am far more fortunate than many, and not as lucky as others. I know this; you don’t need to rub my nose in it.
If you can’t think of me as autistic because I have so much personality…actually, we usually do.
If you can’t think of me as autistic because you see me as a competent adult, you didn’t know me as a child.
If you can’t think of me as autistic because I’m verbal and communicative…read more about AS. Those things are features of the condition.
If you can’t think of me as autistic because I’m so good at my job…please consider that it’s a job that largely entails “keeping track of everything that no one else wants to” (to paraphrase the college instructor who introduced me to stage management as a career option), organizing, color-coding, and working with a collection of people who are also socially marginalized, passionate, obsessive, highly sensitive, and reliant on consistency and repetitive and ritualized behavior. (Actors, I adore you all so much.)
If you think I can’t be autistic because I’m so good at multitasking, well, I’m not. Good at multitasking, that is…I can’t do it at all. I know I’m taking a certain risk in telling you this. What you see when you see me do my job is the result of copious amounts of planning, mental choreography, scripting, queuing, pre-thinking, mapping out scenarios like computer flowcharts, making Excel spreadsheets, preparation and learning from experience, and excellent assistants being good at their jobs, too. (Stage management and life with Asperger’s are both centered around dealing with a quantity of data that a single human being is not truly equipped to handle.)
You get good at anything you do for a long time. I got good at my life when I stopped trying to live one that I realized I could never have.
If you can’t believe I’m autistic, what on God’s green earth do you think I am? Because I sure as hell failed at being normal.
I’m autistic. There’s not another or a better word for what I am. It’s one I searched long and fought hard for.
If you can’t think of me as autistic, it’s not so much for my sake that I care, but watch out that it’s not because you can’t believe that autistic people can be intelligent, kind, good-humored, good friends, good at our jobs, capable of love, highly-skilled or talented, complete human beings. Because if your prejudice is that autistic people can’t be these things, you take chances for jobs, education, friendships, and quality of life away from autistic people who are a whole lot less lucky than I am.