I talked once before about how self-conscious I get, before and after I give talks. I don’t give a lot of talks, but when I do, I’m well aware of people’s responses to the way I look. When I gave my talk on the panel at AutCom last year, for instance, it was near the end of the conference, I had a bad headache, and I couldn’t stop running everywhere and bashing into walls and then lying on the floor and such. I kept thinking, simultaneously, “Do people realize this isn’t voluntary, and that if I tried to stop something worse would happen?” and “Will people think I didn’t actually write this?”
Cheryl Marie Wade writes, regarding her participation in disability theater:
Going from being a person who used to hide her hands with a shawl, which I did, truly in life, for years–would always carry a shawl or a big purse that I could slide my hands under so that people wouldn’t be uncomfortable and I would not feel humiliated by people staring at my hands instead of making eye contact with me, and just the self-consciousness I had about it–to being someone whose anthem was, “Mine are the hands of your bad dreams, booga, booga,” and using my hands as, sort of, the red badge of courage kind of stuff–of just being so sassy, and so out there, and so in your face that you can’t deny me. […] The more I played the “woman with juice” who was okay about her body, the more I truly became her in life. No matter how political I was, I wasn’t okay about my body.
I’ve spent a lot of my life being told by various authority figures not to do the things I do in my videos. For a time I was able to confine at least some of them to behind closed doors — in school bathrooms, for example, which I spent more time in than most kids — but then with the various demands and changes of puberty I was not. People already thought I was weird, but by then they thought I was even weirder, and I heard that these things were some combination of “retarded,” “psychotic,” “attention-seeking,” and “on drugs” (that last assumption being one that led to my brief period of actual drug use), and at any rate definitely ugly and shameful and pointless. Not to mention the endless litany of “Can’t you see people are staring?” (actually, I can’t), and the physical abuse that has ensued over this stuff.
Even the times when I was fairly still weren’t much help. I still remember being on a field trip and sitting on a set of bleachers staring into a light and not moving. Pretty soon everyone was around me waving their hands in my face and noticing that my pupils weren’t reacting to the light and so on and so forth. When I could move again, I could only move very slowly for awhile. (I was not taught about shutdown, nor the effects of unfamiliar locations on autistic people. I had no idea why this was happening.) When I’m still, I’m apparently too still.
But at any rate, while I apparently appeared not to care what people thought of me (and got a lot of compliments for “not caring what people think,” which seemed to hinge on the idea that if I didn’t want to look like this, surely I wouldn’t), I was actually getting more and more self-conscious about my appearance the more people said things (positive or negative) about it. And that’s never entirely gone away. I’m pretty introverted, and don’t generally like standing out, whether in a good or bad sense. (Which is one reason I liked AutCom. I didn’t stand out there whatsoever, I was neither the most normal-looking nor the most unusual-looking person there.)
Some of what has been considered attention-seeking behavior has been more like attention-avoiding behavior. Many of the times I have tried to disappear, I’ve inadvertently done something bizarre-looking to most people. I can remember hiding in closets and being accused of trying to make people find me, and running away from people only to be accused of trying to make people chase after me. And sometimes I, like the monster in Douglas Adams books, convinced myself that if I could absorb myself in something and forget everyone else, they wouldn’t see me. That didn’t work well either. At any rate, I often find attention, whether positive or negative, complimentary or neutral or attacking, aversive in large quantities. (I don’t mind some attention from friends, but the way I seek their attention is to write to them or something.)
So because of all this, I kind of freaked out this morning when I saw that the “In My Language” video I’d made had reached 24,000 views. This is sort of like how I feel after speeches, except it’s going on all the time.
I know this is a very silly reaction in someone who actually made and put the video out there to begin with. But I like the communication part of it. I like having a message and finding an artistic way to put it together. I like the effect that message has on people. I’m just not so sure I like the little part of that that involves people seeing how I look.
The problem is I generally think, “Okay, I have a message, I have a way to put it together, it’s probably a useful message for at least some people to hear, and advocacy is what I do. So if I’m scared to put it out there, tough. It’d be selfish to come up with a useful advocacy message and then not use it because I’m afraid of something totally inconsequential.” Some people enjoy being looked at so much that they get in danger of letting it cloud their message. I think I’m the opposite. I fear being looked at so much that it could cloud my message if I let it. So I’m very stern with myself about that, and I’m sure most of the time I look like I don’t care.
But I do care, I just try to avoid the self-indulgence of letting that run my life.
Sometimes I think though that even the people who like what I write, make too much of my appearance, as if it in itself is a communication of something other than what it is. I look like I look because this is how I look. Yes, my responses to my environment are a lot more meaningful than people give me credit for. But at the same time, this is just what I look like. This is what I have to look like. I don’t get a choice, unless I were to go back onto the brain-destroying neuroleptic drugs that did admittedly make me move around less (but did nothing to stop the reasons I needed to move around, and which may have contributed to some of the level of unusualness of my appearance).
The way I look is not a statement of severity of anything in particular, and it’s not a claim to any other traits besides my appearance. It’s not amazing that I look like this and also write. I know people who look like this and also speak. I have known many people who look far more standard than I do, until you try to talk to them, at which point they have no spoken or typed communication. I have known many people who look far more non-standard than I do, and hold down jobs, have families, take care of themselves reasonably well, speak fluently all or nearly all the time, etc. There’s a myth that you can tell a lot about an autistic person by looking at them. I’ve been trying to break down that myth by juxtaposing my appearance with my writing, but a lot of the time people still think I’m amazing or unique in this regard. I’m not. Or else they think my appearance itself is a deliberate statement about my other abilities. It’s not.
I look like this as far as I can tell because this is how I respond to my environment at this point in time, and because I have no cognitive energy to spare shutting those responses off (there are people who look exactly like me in private but can hide some or all of it in public, at tremendous cognitive and emotional costs that take a long-term toll on their energy levels — all that happened to me was I burned out far earlier than the people I know who are facing the exact same burnout in their thirties and forties). Not that I necessarily would if I could, but it’s a moot point because even when I pour all my energy into looking normal (as I was at one point explicitly trained in doing) I still don’t.
Similarly, the reason I type rather than speak to communicate is practical: If I type, I type more or less what I want to say. If I speak, if anything comes out at all, it’s random things that are anyone’s guess as to whether I mean them, and it makes me overloaded, and tired, and in pain, really fast. It likewise is not a statement on my other abilities or lack thereof. (I know people who can speak perfectly well — at least superficially — who have roughly the same abilities as me in other areas or find a lot of things more difficult than I do, people who cannot speak or type who are way better than me at some things… etc etc etc.)
One autistic person (babalon_it) writes in response to this video:
Wow. That was awesome. I kept feeling myself getting drawn into rocking and singing along with and feeling things and wanting to be there again. I was there when I was a kid. Before they took my soul and told me I couldn’t be that. Before I was taught it was defective to be that. To be me.
Yeah. Exactly. I was taught that all this — the way I perceive things, the way I react to things, the way my body moves in response to things — was inappropriate and somewhat disgusting. And I do note some combination of revulsion and pathologization in some (so far all non-autistic) people’s responses. (And the revulsion and pathologization go hand in hand.)
Someone said that instead of seeing any communication going on, all they saw was a dysfunctional sensory system. They were too repulsed, apparently, to watch more than a minute of the video before coming to that conclusion. Another person described my actions as obsessive-compulsive rather than meaningful. Despite my clear explanations of my own interpretations of my actions. (Which are not entirely deliberate, but which do seem to be a constant back-and-forth response to things around me. Get me around even more unfamiliar stuff and I’ll either do it more or stop moving altogether — or both in rapid succession.)
That’s the opposite of what I talked about before. Some people are willing to add in all kinds of meaning that isn’t there — that by appearing on a video looking the way I look, I am saying something about my other skills, which should all be in line with their stereotypes, and furthermore which should always have been in line with their stereotypes, etc. Some people are willing to take away all the meaning that is there, by claiming that what I am doing serves no purpose, is not communication, etc, and that it is purely a pathological process and they as outsiders know this better than I do. Some people do both at once. I guess I prefer when people do none of the above.
I do want people to rethink what they see when they look at people who look like me, or unusual in some other way, though. Not in order to make them suddenly think everyone who looks like me is like me — that’s not true. But in order to make them think there’s more to people than the emptiness I’ve seen attributed to many.
That said, behind the message I’m, as a person, just as self-conscious as I ever was. I’d think I’d have gotten over that by now. By the way, it’s a myth that autistic people can’t ever experience this. Some do, some don’t, from what I’ve seen. The reason isn’t of course because there’s anything inherently shameful or defective about being disabled/autistic/etc, but because we’re taught by most people around us that there is. Laura Minges wrote a wonderful monologue called Disability Shame Speaks (click through it, there’s several pages), that probably explains a whole lot of my current reactions to all this.
Additionally: There’s a person who wants to know if I am really typing this stuff. Anyone who wants to know that (and who isn’t one of the very few people I’ve already expressed a wish never to be in direct or indirect contact with) is welcome to look at the page I have on official documentation. Look at the last document. It tells you where I receive services. You are welcome to set up a way to meet me at that place, with either my staff or my case manager, at some point. At which I will make it as obvious that I am the one writing what I write as I have to. (An easier task for me than for people who use FC all the time. I only rarely need it, and therefore can make it obvious through what is usually fast ten-fingered typing that I am writing what I write. I know plenty of people who use FC, though, who are just as much for real as I am, and don’t want you to go away thinking they aren’t real but I am or something, although I have little control over that I know.) Same goes for people who want to know if I really exist or not. That’s a standing offer. If you want to email me, look at the web address for this site, and insert an @ instead of a . before autistics.org.
Ballastexistenz 
Thanks for this and my apologies for making simplistic assumptions about you in the past. Us NTs, with our (allegedly) much vaunted superior theory of mind skills should learn to take what autistics tell us at face value. If it challenges our ideas we should change our ideas and not try to bend your words to fit our pre-conceptions.
Thanks.
I do remember reading anonymized descriptions of myself written by you, and thinking it was just as well that they were anonymized, because while I could vaguely recognize they were about me, and I could imagine them to be absolutely true of someone else, they certainly were not how I remembered things, even though I’m sure something I said gave you the impression they were true.
Because I was thought to be bright, the assumption was that I was bored and acting out from boredom, rather than uncomprehending, so I was accelerated. It was only when I had a total breakdown from stress that anyone realized something more was up than that, although I’d noticed long before (but been unable to articulate anything, so I’d done all the things that had gotten me labeled “bored” instead, as an attempt to regulate the stress and overload).
Urgh, that sounds… similar to our experience in “gifted programs,” and I’m not sure that we wouldn’t have had a complete breakdown if we’d been kept in an “accelerated curriculum” beyond junior high. There were a lot of skills we just didn’t have that we could compensate for, for a while, through things like having a really good memory, but after a while that couldn’t keep things together.
And yeah, the whole “bright kids act out because they’re bored” assumption screwed us over several times. There seemed to be this prepackaged assumption that whenever anyone labeled gifted acted in a certain way, it was always because they were “bored and needed more challenging work.” We weren’t even actually ‘acting out’ in the traditional sense, until we started kind of mirroring the behavior of a classmate who did– some of it was just stuff like coming close enough to shutdown that we’d basically sit there and stop responding to almost anything. And this always inevitably somehow meant that we were “bored” or “needed to be challenged more.” (The worst thing to us, actually, was when they thought we weren’t doing well for some psychological or manipulative reason, and started trying to therapize us– “You’re actually really good at this, you’re just afraid of success.“)
We’ve had to tell several people over the years “If what we currently say about ourselves seems to contradict what we said in the past, take the more recent version as the more accurate one.” Mostly about plural-related matters, but about a few other things as well. And there are times when we worry that others will get the impression of us as flaky or untrustworthy because of that, but seriously, in a society that seems to frequently go to extreme lengths to keep people from being able to have any knowledge or awareness of how they work, and try to replace that with some generic ideal or fantasy with pre-chosen motivations, likes and dislikes, it seems surprising to us that more people don’t do it.
Yeah. In my case it was mostly overload-type things and ‘stimming’ that got me in trouble.
My brother made an interesting point related to this, that he thinks it would have been a lot more useful to him to be taught how to handle boredom, rather than to teach him that his boredom should be immediately assuaged by something interesting.
Hi. I got here from your link on YouTube. Thank you for sharing all of this – if you don’t mind, I’m going to create an RSS feed on Livejournal (my primary journaling place) so that I can keep up with and communicate with you. I appreciate that which I’ve seen you share so far and would like to get to know you.
Again, thanks.
I arrived via Andrew Sullivan’s Daily Dish. I am awed! Your video has left me feeling humbled by the depth of our ignorance about the potential around us. Thank you for reinforcing so vividly that cognition need not follow any prescribed form.
Ballastexistenz wrote: “I was diagnosed and often made to play along with a number of other things, mostly after that diagnosis… [missing text] …I did experiment with drugs for a brief period of time (a few months). People thought I was on drugs already, because of the manner in which I responded to my surroundings (see above about “not appearing normal”).”
I can relate to that as one of the millions who have been diagnosed with ADD. Stopping the medications (legal and otherwise) and learning to defend my “eccentric” learning methods was very difficult but ultimately the best thing that I could have done for myself.
The big assumption with ADD is that I must be hyperactive and flighty in order for me to have attention deficit disorder. They think I’m trying to pull some kind of trick on them when I lose my car keys for the 3rd time in a month – because I’m “too smart” to do that kind of thing without an agenda or motive.
The next assumption is that I should medicate myself to fit their idea of “functioning”. A few discussions with people in Crystal Meth Anonymous can reveal where that approach has led an alarming number of ADD diagnosees.
The medications available would indeed allow me to remember where I put my keys but that would be all I was focused on… then you start the balancing act because nature has a way of raising the stakes on you. Yesterday’s cure becomes today’s nightmare addiction. I believe the road to hell is paved with Ritalin and Day Planners.
There seems to be a lot of misguided blame in the world for things that most people should be able to forgive as they have experienced it on some level themselves. Why is it so incomprehensible to allow people to think differently?
When people excuse themselves for forgetfulness with a statement like “I’ve just got a lot on my mind today” – I welcome their brief visit to my world with a chuckle.
Thanks for the insight and perspective. I am enjoying learning so much on here.
Thank you for sharing your world with everyone. Your website and videos have helped me to understand and be more open on the way people communicate with one another. It has also helped me understand other people and the way they may percieve the world they live in.
You are truly an inspiration. I am designing a medical brochure for autism for a class I am in and I immedicatley remember seeing you on Anderson Cooper. Do you mind if I use your name?
Thank you
Sandra Lee
I am speechless and humbled. I learned, I hope. I apologize to you and every other person with whom I have encountered with Autism, who I misunderstood or made assumptions about. I will be better for this I thank you.
Deb H
Michigan
I don’t know why, but after reading your blog and about you, I thought I’d share my story:
I used to work in a group home for developmentally disabled adults. When I started, I was given the low down on everyone. “This person has behavorial issues.” “This person can’t learn.” But lo and behold, in the morning when I was the only staff: The person who was “regressing” would sit at the table while I gave her words to write. The person with “behavorial problems” would sit and draw. The person who “wouldn’t come out of his room” would be in the front room dancing to music videos. The person who “couldn’t learn” and “couldn’t do anything” did everything himself, including shaving.
At 7:30, another staff would come and make her rounds saying good morning to everyone. Everything would still be fine. But then 8:00 would come and everything would change when the rest of the staff starting showing up. These were the people who “trained” me.
It’s so frustrating to try and make a positive influence in these people’s life just to watch in all go down in drain in a matter of minutes. How could these staff members who have worked with the disabled for years have such horrible attitudes?! Of course so-and-so has a “behavioral issues” — look at how you just talked to him! Of course so-and-so “can’t do anything” — you don’t give him a chance! So what if he moves a little slow, your cigarette break can wait. Look at him, he doesn’t want you to do things for him! He’s crying because you treat him like a baby, not because he has “issues.” Just because he can’t talk, doesn’t mean he’s not communicating with you. Pay attention!
Well, you get the idea of how things really were. There were a handful of us who really thought that the purpose of the home was to get the “clients” out–whether it be on their own or in assistant living. But no, I’m sure you know that’s not how it is. They stay and nothing happens to them. Their whole life becomes waiting for family to pick them up and get them out of there–even if it’s just for a few days. And what could I do to change it? Apparently, nothing. Everytime I would bring something up, I was told that I just didn’t know anything. I was just a “kid.”
Unfortunately, I ended up taking the whole situation home with me–I couldn’t get the wrongness of it off of me. After a while, I quit for a job in my field. Needless to say, I still feel guilt to this day for quitting. I’ve always wondered if my boys and girls thought I abandoned them. Do they really need me like I’m afraid they do? Does someone else know who likes what type of music or who likes to color and who likes to tell stories? Do they even know all their names? I still know all their names and they know mine — everytime I visit, I hear someone yelling “April is here!” The hardest part of visiting is always when they ask me when I coming back.
Sorry this comment is so long, feel free to read (or not) and delete it. I guess I just wanted you to know that some people really care — not out of feeling sorry, but because they see disabled people as what they really are: individual people trying to make it through life the best they can — just like anyone else.
Hi,
I have relatives who make major assumptions where I’m concerned. Just yesterday, I realized my own grandmother’s assumption about me when she referred to me as ‘Mentally Retarded’ in speaking directly to me. Although the shock has subsided, I do now understand her assumptions about me.
I suffer from Asperger’s Syndrome; my Nurse Practitioner diagnosed me two months ago. My grandmother has noticed the symptoms for years, and has assumed I’m automatically stupid and therefore, not worthy of being treated like the 36-year-old adult that I am.
Also, I’ve had friends forbidden to speak to me recently, by others who have told them I am ‘Evil’, but will not give them or me a reason that I’m supposedly evil. They just look at me and assume I’m bad, which I must myself assume has something to do with my mannerisms and my facial expressions.
At least I now know what I suffer from, and have a chance because of this knowledge to learn to cope with how others view me. But I think what hurts me the very worst, is being treated like a child because I’m not what others consider ‘normal’. This is especially devastating when I am treated this way by family members and close friends.
Ironically, any time I gain a close friend, I automatically assume I’m not going to have that friend for long, because someone, somewhere, will do everything in their power to keep me from forging a strong relationship with those who identify with me. Because of this, I usually have almost no friends, at least of the kind who I talk to face-to-face. Online, I have lots of friends. But I wish people would look at me and see a human being instead of a potential danger.
Thank you kindly for listening. I really needed someone to talk to, who would actually understand where I’m coming from. All this stuff with Aspergers is just so new to me, and I really do not have anyone to talk to who understands my situation, other than my Nurse Practitioner.
Thank you for starting this blog, and thank you also for posting this article on assumptions. Have a good day, and I’ll be sure to read as regularly as I can. I want to know as much as I can about my disorder, and how it will affect me as well as others.
Very cool. Not even I have gone that deep into myself.
Keep writing.
Well written and insightful. Your continual updating of your ideas is valuable and necessary to understanding the events of autism. Thank you. Wayne
From what I’ve read you seem absolutly amazing. The people you know personally in your life are truly blessed to know you and I hope they are greatful that you exist.
You have blown my mind today. There was me before seeing your videos and reading your blog – and then me afterwards. Know that you are doing something really valuable. Thanks
April……..I can totally relate to your comment about the group home. I volunteered at one for a while, but one of the staff bitches sexually harassed me, so I had to leave. I had a particularly close relationship with one client specifically………I mean to say that I connected with him in a way that I don’t think anyone else there could have…..except perhaps the other clients. I miss all of them terribly………I can’t stand to think they’re in the hands of people who call them crazy and bad and stuff like that. I’m STILL ashamed of myself that I haven’t been back there yet.
The Integral