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The spectrum has many colours.
Apr. 3rd, 2013 09:34 amApparently April is Autism Awareness Month, at least that's what Facebook tells me, and all over the place I see bright-coloured images and banners talking about how autistic kids need our love and respect and understanding. I'm not even going to start in on all the images about how their lives are so awful and how they'll never amount to anything; plenty of people have torn down that kind of pity party in the past, and anything I say on the subject will just be a rehash of their words.
But no, what I want to get off my chest today is simply the following: contrary to what all those supportive images would have you believe, it's not just kids who can be autistic.
I can understand, to a degree, why so much focus goes on the kids. Kids are in their formative years, a difficult period of their lives to start with, and it sucks to think that some kids are not going to get to grow up and experience the full range of everything the world has to offer. (Not that any kid ever does, really...) But adults with autism also have a pretty raw deal, in no small part because they get almost no recognition. It's like in the public eye, autism is a childhood disease, something that you grow out of once you hit maturity. And if you don't, then sure, you're one of those pitiable people who needs a caretaker and will probably never go on to lead a satisfied life, never get married or have kids or any of that stuff.
Oh wait, I promised not to rant entirely on that aspect of things. Back to my original point.
Which is that the spectrum is large, vast, and varied, and if you want to spread awareness of autism, you have to do a couple of things. 1) Look beyond the children. 2) Look beyond those adults who can't do anything but make incoherent noises and need a caretaker.
It isn't that they aren't important. But so are the people who are still on the spectrum but who hide in plain sight. The ones who can, with effort, pass for completely normal. The ones you overlook on a daily basis who are trying their best to pass and to avoid snide comments about how aloof or rude or weird they are. They're people you work with. They're people you go to school with.
They're people like me.
I've never had an official diagnosis of autism. I probably never will, no matter how many of the signs and symptoms I fit. I'm an adult. If I had anything that was important, it would have been serious enough to be diagnosed as a kid, right?
Well, sure. If you've got parents who know the signs and who recognize the struggle of someone who's on the high-functioning end of the spectrum. Otherwise, you're just likely to grow up as someone with a boatload of issues that people will pass off as a hundred and one other things, if they pass it off as anything at all.
My own story? I'm painfully shy, and always have been. I have trouble making eye contact, especially with people I don't know, but on bad days I can't even meet me roommate's gaze, and I trust him more than anyone. I can understand people in a purely academic sense, if I'm just talking with someone about how people function, but applying that to situations in my life? Forget that; I have trouble with social and conversation cues all the time, and nuances of interactions often just go right over my head. I get obsessed with things easily, and have to be really on my guard about it because I act like everyone should find it just as fascinating as I do, and so I don't shut up about it (so often I overcompensate and just don't talk about anything at all). I like my routines, they're comforting, and it takes me a very long time to adjust to new ones. Even changing my desk at work is difficult; I have to sit in a new seat, arrange my desk a new way, even though all the mice at all the computers are the same, the new one just feels wrong in my hand, the people are different and I don't hear familiar voices or walk familiar paths anymore). Textures still fascinate me in the same way they fascinate babies. I once spent the better part of a therapy session, almost 2 hours, playing with a candy wrapper because it had a really smooth part on it that I liked to touch, and it was a fairly tenses session so touching it soothed me. If I wasn't touching it, I felt chaotic inside, like there was a swirling storm in my chest. Nonverbal communication, such as writing, has always come easier for me than talking-and-listening, because I get to order my thoughts and they're not as jumbled, I can put the emphasis in the right places and explain myself better.
I also have multiple conditions that are commonly comorbid with autism, such as Tourette syndrome, OCD, depression, and an anxiety disorder. Mess with something of mine and again, it feels wrong, even if I can't pinpoint how. Stress me out and watch my head tic, or listen to my mouth make squeaks and grunts and other animal sounds, or listen to the echolalia (repeating the last word or sound or series of sounds I heard) occur. Yes, I also sometimes flap my hands, because sometimes it's like there's an itch-that-isn't-an-itch under my skin that needs movement, and if I let my hands flap and flex and clench and twist, then that feeling can go away. Sometimes it's quick, sometimes it takes a while. yes, I also rock back and forth if I'm upset. Or sometimes if I'm just sitting. I did that as a child a lot. I remember my parents watching me do it and asking if I was upset or angry about something. Nope, I was just rocking. Because that's what I did. I accidentally step on a crack in the sidewalk with one foot? Have to step on one with the other foot. On the next step. In the same spot. With the same pressure. Repeat until I've balanced out the feeling of weirdness in my body.
Empathy seems to be all over the map with me. Either I'm crying because someone mentioned their cat is sick, or they're telling me how their uncle just died and I have to avoid asking them what they died from, what symptoms he showed, did you know there was a study done recently regarding that? Grief-sharing is sometimes the last thing on my mind. I've learned to fake it, because hell, my natural reaction is rude and inappropriate and I hate it. I hate that at times, I'm practically like House. Why are you upset; you just told me that something really interesting just happened to your... dead uncle... Right. But remember how I said that someones I get fascinated with something and don't quite get, instictively, why other people aren't just as fascinated? That's part of it.
Get me really stressed and watch me lose the power to look up at all, and I can no longer speak. It's happened. I fear it happening again, especially at work, because management already fears me because of mental health issues. No exageration there, by the way. Confess in a fit of panic that you're having delusons and can't work the rest of your shift, and blammo, they do everything they can to keep you from coming back, supervisors start doing stupid things like keeping you away from others "for your own good," and management thinks that your real physical health problems are all just in your head. If I suddenly became so worn down that I couldn't talk at all? They'd probably tell me to go get another psych evaluation and not come back until I have signed forms from 2 doctors telling them that I'm not a danger to myself and others. Because I had such a bad day that I stopped talking.
But most people don't see this, because over the years, I've learned numerous tips to make myself pass as normal, or at least as normal as I can. And it takes a lot out of me, too, keeping tabs on all the little mannerisms that tell the world that I'm a freak they don't want to deal with, and remembering to not show them when I can. The physical effort in lifting my head to at least look somewhere near a person's eyes. Remembering to blink to make it look like I'm not rudely and aggressively staring at them. Hiding my hands when they twist and flap. Trying to keep my head from twitching madly when I'm upset. Clamping my mouth closed to keep sounds from coming out when I feel them coming. Pretending that change doesn't bother me. Copying tones and conversations from other people, stuff that means nothing and bores the hell out of me because I've learned that it's expected that I do so.
It takes effort to look normal. Going through a day at work for me is tiring and stressful, not just because my job is usually that way, but because of the extra effort I have to put in.
People on the high-functioning scale can be a lot like me. Hidden, hiding, and trying to stay that way because hell, autistic adults don't really exist, right? People like that are just weird and rude and why would I want to be friends with someone like that? Why would I even want to be around them?
So if you want to raise awareness of autism this month, take a little time to give some attention to people over the age of 12 who might be going through some serious crap on a daily basis, just so you don't find out how weird they really are. Remember to include the autistic adults in your fundraising campaigns. Try to look around and notice the signs; chances are there's somebody very close to you who's a lot like me. Diagnosed or not, I can just about guaranee you that you know someone who fits along the spectrum.
That's why it's a spectrum, by the way. Because this condition shows up in a lot of ways, and in varying degrees, with a mix-and-match set of symptoms that doesn't always show up the same way in every case.
It's why so many people scoff at it, too. Because it's so easy to say, "My kid's shy around strangers and is really interested in something, so she must be autistic." Even if that's all they show. And yes, some parents do love to diagnose their kids themselves, even when there's no cause for it, and it gives many legit diagnoses a bad name.
But the fact that it's a spectrum and that there's room for so many different manifestations and degrees means that there's always more to it than you're seeing, and usually more than you even want to see. It's comforting, in a way, to think and act like autism is only something that kids have to worry about, that it's always clearly identifiable. To think otherwise invites the idea that someone close to you might be autistic, might be having difficulties that are going unrecognized. Is it your cousin? Your friend? The guy who sits beside you in the office who only ever uses blue pens? The girl two rows back from you in the lecture hall who keeps doodling in her notebook? Could be anyone.
And they deserve as much love and respect and recognition as all the kids in these banners and images that float around the Internet. They deserve no derision, no scoffing, no avoidance. If you wouldn't avoid a kid who's autistic, why would you avoid an adult who's autistic?
Actually, I know the answer to that, and it's not a pretty answer. You see an autistic kid, and people who drink in these banners get to give the kid a hug, whisper to them about how special they are, and go away feeling pretty good about themselves. It's a lot harder to do that to an adult without seeming creepy. It's not that people don't care. It's that a lot of them only want to care in a way that lets them feel better, like they made a kid's day by doing what they did. It's uplifting, it makes them feel like they're doing something positive and good and fixing the wrongs of the world. It's not as easy to get that feeling by hugging someone like me, by telling me how special I am. Those of us who can pass in the world will likely just look at you like you're crazy. Or possibly insulting. You ignored me so much before; why am I suddenly being treated like the panacea for your ills?
Pretty sure some autistic kids don't like being hugged by strangers. Pretty sure a lot of non-autistic kids don't like being hugged by strangers, either.
I ranted on this for longer than I meant to, and about more than I mean to, too. But I still stand by what I say, the underlying theme of my message. It isn't just kids. It isn't always obvious. It's not a death sentence, and it's not something that will leave you unfulfilled for your whole life. It's people around you, people you see every day and don't think twice about.
If this month is about awareness, then maybe it's time to actually be more aware. Giving yourself a pat on the back because you shared a banner doesn't do a whole lot. Realizing that someone you know might be struggling, then going up to them and telling them, honestly and truly, that you understand a little better now... That's the sort of thing that can change more lives than a hug. That's inclusiveness. That's compassion, understanding, and love.
That's what real awareness can lead to.
But no, what I want to get off my chest today is simply the following: contrary to what all those supportive images would have you believe, it's not just kids who can be autistic.
I can understand, to a degree, why so much focus goes on the kids. Kids are in their formative years, a difficult period of their lives to start with, and it sucks to think that some kids are not going to get to grow up and experience the full range of everything the world has to offer. (Not that any kid ever does, really...) But adults with autism also have a pretty raw deal, in no small part because they get almost no recognition. It's like in the public eye, autism is a childhood disease, something that you grow out of once you hit maturity. And if you don't, then sure, you're one of those pitiable people who needs a caretaker and will probably never go on to lead a satisfied life, never get married or have kids or any of that stuff.
Oh wait, I promised not to rant entirely on that aspect of things. Back to my original point.
Which is that the spectrum is large, vast, and varied, and if you want to spread awareness of autism, you have to do a couple of things. 1) Look beyond the children. 2) Look beyond those adults who can't do anything but make incoherent noises and need a caretaker.
It isn't that they aren't important. But so are the people who are still on the spectrum but who hide in plain sight. The ones who can, with effort, pass for completely normal. The ones you overlook on a daily basis who are trying their best to pass and to avoid snide comments about how aloof or rude or weird they are. They're people you work with. They're people you go to school with.
They're people like me.
I've never had an official diagnosis of autism. I probably never will, no matter how many of the signs and symptoms I fit. I'm an adult. If I had anything that was important, it would have been serious enough to be diagnosed as a kid, right?
Well, sure. If you've got parents who know the signs and who recognize the struggle of someone who's on the high-functioning end of the spectrum. Otherwise, you're just likely to grow up as someone with a boatload of issues that people will pass off as a hundred and one other things, if they pass it off as anything at all.
My own story? I'm painfully shy, and always have been. I have trouble making eye contact, especially with people I don't know, but on bad days I can't even meet me roommate's gaze, and I trust him more than anyone. I can understand people in a purely academic sense, if I'm just talking with someone about how people function, but applying that to situations in my life? Forget that; I have trouble with social and conversation cues all the time, and nuances of interactions often just go right over my head. I get obsessed with things easily, and have to be really on my guard about it because I act like everyone should find it just as fascinating as I do, and so I don't shut up about it (so often I overcompensate and just don't talk about anything at all). I like my routines, they're comforting, and it takes me a very long time to adjust to new ones. Even changing my desk at work is difficult; I have to sit in a new seat, arrange my desk a new way, even though all the mice at all the computers are the same, the new one just feels wrong in my hand, the people are different and I don't hear familiar voices or walk familiar paths anymore). Textures still fascinate me in the same way they fascinate babies. I once spent the better part of a therapy session, almost 2 hours, playing with a candy wrapper because it had a really smooth part on it that I liked to touch, and it was a fairly tenses session so touching it soothed me. If I wasn't touching it, I felt chaotic inside, like there was a swirling storm in my chest. Nonverbal communication, such as writing, has always come easier for me than talking-and-listening, because I get to order my thoughts and they're not as jumbled, I can put the emphasis in the right places and explain myself better.
I also have multiple conditions that are commonly comorbid with autism, such as Tourette syndrome, OCD, depression, and an anxiety disorder. Mess with something of mine and again, it feels wrong, even if I can't pinpoint how. Stress me out and watch my head tic, or listen to my mouth make squeaks and grunts and other animal sounds, or listen to the echolalia (repeating the last word or sound or series of sounds I heard) occur. Yes, I also sometimes flap my hands, because sometimes it's like there's an itch-that-isn't-an-itch under my skin that needs movement, and if I let my hands flap and flex and clench and twist, then that feeling can go away. Sometimes it's quick, sometimes it takes a while. yes, I also rock back and forth if I'm upset. Or sometimes if I'm just sitting. I did that as a child a lot. I remember my parents watching me do it and asking if I was upset or angry about something. Nope, I was just rocking. Because that's what I did. I accidentally step on a crack in the sidewalk with one foot? Have to step on one with the other foot. On the next step. In the same spot. With the same pressure. Repeat until I've balanced out the feeling of weirdness in my body.
Empathy seems to be all over the map with me. Either I'm crying because someone mentioned their cat is sick, or they're telling me how their uncle just died and I have to avoid asking them what they died from, what symptoms he showed, did you know there was a study done recently regarding that? Grief-sharing is sometimes the last thing on my mind. I've learned to fake it, because hell, my natural reaction is rude and inappropriate and I hate it. I hate that at times, I'm practically like House. Why are you upset; you just told me that something really interesting just happened to your... dead uncle... Right. But remember how I said that someones I get fascinated with something and don't quite get, instictively, why other people aren't just as fascinated? That's part of it.
Get me really stressed and watch me lose the power to look up at all, and I can no longer speak. It's happened. I fear it happening again, especially at work, because management already fears me because of mental health issues. No exageration there, by the way. Confess in a fit of panic that you're having delusons and can't work the rest of your shift, and blammo, they do everything they can to keep you from coming back, supervisors start doing stupid things like keeping you away from others "for your own good," and management thinks that your real physical health problems are all just in your head. If I suddenly became so worn down that I couldn't talk at all? They'd probably tell me to go get another psych evaluation and not come back until I have signed forms from 2 doctors telling them that I'm not a danger to myself and others. Because I had such a bad day that I stopped talking.
But most people don't see this, because over the years, I've learned numerous tips to make myself pass as normal, or at least as normal as I can. And it takes a lot out of me, too, keeping tabs on all the little mannerisms that tell the world that I'm a freak they don't want to deal with, and remembering to not show them when I can. The physical effort in lifting my head to at least look somewhere near a person's eyes. Remembering to blink to make it look like I'm not rudely and aggressively staring at them. Hiding my hands when they twist and flap. Trying to keep my head from twitching madly when I'm upset. Clamping my mouth closed to keep sounds from coming out when I feel them coming. Pretending that change doesn't bother me. Copying tones and conversations from other people, stuff that means nothing and bores the hell out of me because I've learned that it's expected that I do so.
It takes effort to look normal. Going through a day at work for me is tiring and stressful, not just because my job is usually that way, but because of the extra effort I have to put in.
People on the high-functioning scale can be a lot like me. Hidden, hiding, and trying to stay that way because hell, autistic adults don't really exist, right? People like that are just weird and rude and why would I want to be friends with someone like that? Why would I even want to be around them?
So if you want to raise awareness of autism this month, take a little time to give some attention to people over the age of 12 who might be going through some serious crap on a daily basis, just so you don't find out how weird they really are. Remember to include the autistic adults in your fundraising campaigns. Try to look around and notice the signs; chances are there's somebody very close to you who's a lot like me. Diagnosed or not, I can just about guaranee you that you know someone who fits along the spectrum.
That's why it's a spectrum, by the way. Because this condition shows up in a lot of ways, and in varying degrees, with a mix-and-match set of symptoms that doesn't always show up the same way in every case.
It's why so many people scoff at it, too. Because it's so easy to say, "My kid's shy around strangers and is really interested in something, so she must be autistic." Even if that's all they show. And yes, some parents do love to diagnose their kids themselves, even when there's no cause for it, and it gives many legit diagnoses a bad name.
But the fact that it's a spectrum and that there's room for so many different manifestations and degrees means that there's always more to it than you're seeing, and usually more than you even want to see. It's comforting, in a way, to think and act like autism is only something that kids have to worry about, that it's always clearly identifiable. To think otherwise invites the idea that someone close to you might be autistic, might be having difficulties that are going unrecognized. Is it your cousin? Your friend? The guy who sits beside you in the office who only ever uses blue pens? The girl two rows back from you in the lecture hall who keeps doodling in her notebook? Could be anyone.
And they deserve as much love and respect and recognition as all the kids in these banners and images that float around the Internet. They deserve no derision, no scoffing, no avoidance. If you wouldn't avoid a kid who's autistic, why would you avoid an adult who's autistic?
Actually, I know the answer to that, and it's not a pretty answer. You see an autistic kid, and people who drink in these banners get to give the kid a hug, whisper to them about how special they are, and go away feeling pretty good about themselves. It's a lot harder to do that to an adult without seeming creepy. It's not that people don't care. It's that a lot of them only want to care in a way that lets them feel better, like they made a kid's day by doing what they did. It's uplifting, it makes them feel like they're doing something positive and good and fixing the wrongs of the world. It's not as easy to get that feeling by hugging someone like me, by telling me how special I am. Those of us who can pass in the world will likely just look at you like you're crazy. Or possibly insulting. You ignored me so much before; why am I suddenly being treated like the panacea for your ills?
Pretty sure some autistic kids don't like being hugged by strangers. Pretty sure a lot of non-autistic kids don't like being hugged by strangers, either.
I ranted on this for longer than I meant to, and about more than I mean to, too. But I still stand by what I say, the underlying theme of my message. It isn't just kids. It isn't always obvious. It's not a death sentence, and it's not something that will leave you unfulfilled for your whole life. It's people around you, people you see every day and don't think twice about.
If this month is about awareness, then maybe it's time to actually be more aware. Giving yourself a pat on the back because you shared a banner doesn't do a whole lot. Realizing that someone you know might be struggling, then going up to them and telling them, honestly and truly, that you understand a little better now... That's the sort of thing that can change more lives than a hug. That's inclusiveness. That's compassion, understanding, and love.
That's what real awareness can lead to.
