Monkey Pliers

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The Poster

A Post by Monkey Pliers
on September 10, 2013

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ANNOYANCE WARNING: Irritating poster indicating tiresome lack of insight. There. That ought to about cover it.

  When I first started thinking about this, I got the slogan wrong. I remembered it incorrectly as having been, "I have autism, but it doesn't have me." Now, I've had to think about why I remembered it that way, when what it actually said was, "Autism does not define me." I've also had to consider why I not only hated what I thought the poster said but why being reminded of the correct wording didn't make me feel any better. My answer has turned out to be in the realization that the two statements actually convey the same meaning - a meaning that makes for a poor fit with my concept of autism.

  What does it mean to say autism doesn't have me? It means, "I'm not in its grip. It's not bringing me down. My life isn't all about autism and nothing else." Well, suppose for a moment we were talking about my fibromyalgia. Am I sometimes in its grip? Yes, every time I'm in too much pain for too long or too tired to manage other aspects of my life. Is it bringing me down? Refer back to the previous statement. Is my life all about fibromyalgia and nothing else? Okay, wait a minute. Now, this makes it sound more like the slogan's making a good point. I do have a life, and it's about a good deal more than fibromyalgia. But let's think for a moment about why this would need to be said, and to whom. This isn't television drama; we're not living out the movie of the week here. From whose perspective is someone with a health condition making their life and identity be all about that and nothing else? Furthermore, if someone's complaining all the time, why do you suppose that is? Can it only be because they have an attitude problem? Or might there be some value to exploring further and finding out whether or not something more is really going on, such as that rearranging your plans, environment, expectations, and so on when you're newly disabled or newly diagnosed deeply affects your sense of yourself and your future or that pain wears people down or that knowing others don't like being inconvenienced by having to adjust for your needs is a drag or that society coaches people to feel like burdens and to hate it, even if the people who then feel like burdens also feel obligated not to consider others to be burdens for whatever their needs may be? Now that slogan isn't sounding so much like its for my benefit. Instead, it seems more like something I might get tired of having to remind others about or something others might ignorantly insist I need to be told in order to push me to meet more closely with their approval.

  But that's not what the poster actually said, and we're not talking about fibromyalgia anyway. So, what does it mean to say autism doesn't define me? I could really just go ahead and repeat the above paragraph, but that wouldn't be quite right. The reason for this is that autism has an up side. Even when I'm experiencing the direct impact of my autistic traits upon my life, it's not necessarily a bad thing. For example, hyper-focus and perseveration are great for exactly what I'm doing right now: writing this post. Have I ever found myself in the grip of confusion in a social setting; overwhelming emotion; or overload from too much activity, sensory input, or cognitive demand? Absolutely! Does it "bring me down"? That sometimes depends on what kind of help I have, how much of it I get, when it becomes available, and whether or not I have it long enough to see me through. Help can come from others or be something I provide for myself, by the way, so it may often (but not always) be better for people to leave me alone than for them to to worry about whether or not they can meet my needs. See how nice that is for people who fear I might somehow "burden" them? But it does still mean they might have to accommodate me by letting me walk away from something that's too much for me or not judging me for stimming. Sorry, folks. You can't have everything.

  As for whether or not my life is all about autism, once again, I could just refer you back to that second paragraph. Once again, however, that wouldn't quite do the job. For me, there's still a lot to sort through with regard to how much autism itself is disabling and how much it's society's approach to autism that's disabling. (For an excellent post arguing that it's largely society's approach that disables, I highly recommend Nick Walker's August 16, 2013 essay: Throw Away the Masterís Tools: Liberating Ourselves from the Pathology Paradigm.) What I can tell you at this point is that I don't always experience autism the way I experience fibromyalgia, and it's not just because I have yet to get excited about there being some kind of fibromyalgia "up side".

  To my way of thinking, autism occupies a place in my life and being that's somewhere between, or, more correctly, overlapping with, the place occupied by having fibromyalgia and that of being gay. It's been pointed out by several others before me that one does not "have gayness". One is gay. My gayness is not at all disabling. Only society's perception, should enough people allow it to do so, paints it as a flaw, a deficit, a problem. Only society's prejudice, were it left unchecked, could hamper the full living of life by a gay person, all else being equal. Fibromyalgia, on the other hand, has done things like made it hard for me to do something so simple at home as to eat properly, because I've sometimes been too tired to carry out all the things involved in getting properly fed. Sometimes it's the shopping that's too challenging. Sometimes it's the cooking. Sometimes it's getting up at all, even just to go find a handful of nuts and fruit to consume. Fibromyalgia means having chronically recurring pain that distracts and drains and aggravates. All kinds of things, in many areas of life, are affected negatively by fibromyalgia, not just the ones with which there would be no problem if our culture were just run in some other way.

  For me, autism offers a bit from column "A" and a bit from column "B". I've been making a gradual shift in the direction of rejecting "person first language" as it's applied to autism, because being autistic is, to me, an integral part of my identity, like being gay. (I'm not into the whole uppercase thing, though, having actually dropped it from my references to gay identity for reasons I won't get into here.) There are some great blog posts to read on this subject, and I think a great place to start is with the work of Lidia Brown. I refer you to two of her works: Person-First Language: Why It Matters (The Significance of Semantics) and Identity and Hypocrisy: A Second Argument Against Person-First Language. The handy thing about both having fibromyalgia and being autistic is that I can compare the two. (Could that be considered a fibromyalgia up side? Well, anyway...) I wasn't born with fibromyalgia, as far as I know, though anyone who develops a condition later on in life may have been born with predisposing factors. The cause of it isn't known yet, so I can't speak to that issue at this time. But I'm pretty sure that, if I suddenly stopped having fibromyalgia, I'd still be me. My life might change, but it would still feel like my life. If I'd never had it to begin with, I might have a different perspective on certain things now, due to different experiences, but there's not something fundamental about the way I am as a human being that would be gone. Fibromyalgia affects me; it's not an integral chunk of what constitutes "me".

  My experience of autism is different. Erasing it from my brain wouldn't even just be like cutting out a piece of me and substituting it with something else, because brains, and the complexity of the way they make people be who they are, don't work that way. Autism is not a tumor. It can't just be removed and discarded. You may as well try to "treat" someone's combination of competitive drive, hand-eye coordination, understanding of a sport they love, and ability to sense where everyone is / what's going on in each moment of a particular game, in an attempt to make them be good at sewing instead of athletics. I'm not saying athletes can't sew or that people who love to sew can't play sports. I've personally seen otherwise. I'm also not saying people can't develop new interests or adapt to changes in their lives that make old activities no longer be possible. My point is that you can't shove someone into being something they're not designed for by removing the very source of their strengths, interests, and perspectives and then expect to have the same person at the end of your efforts.

  There are things I appreciate about my autism and things with which I struggle. At the end of the day, however, I think I can say that, with all its ups and downs, autism does define me, to a certain extent. It's far from the only thing that does. My life is still about a good deal more than just that. But it's definitely in the mix. It's not detachable from the rest of me. So, please, don't try to impose an outside perspective on my internal experience of myself. If autism seems like some kind of riddle or mystery to you, so that you think I'm best represented by a puzzle piece, that seems to me to be very clear evidence that my understanding of what's going on is, quite frankly, better than yours. I therefore reserve the right to speak for myself about what my autism is for me, and I surely would not have composed the words on that poster in an attempt to express my sense of myself.

  It's not brave or heroic to try to dictate to others how to think of themselves, even if you mean well and want to help someone develop a positive attitude. You may not actually understand what someone's attitude really is or where it comes from. But I would consider someone a strong and courageous ally if they could meet me where I am and move forward with me in the direction of my choosing, rather than insisting on leading me by the hand in an area in which I have the greater experience and clarity. If I seem puzzling to you, in other words, don't just stand around trying to make decisions for me in your puzzled state. Communicate* with me, and I may be able to explain to you the things you think don't make sense.

* Are you concerned about being able to communicate with a child or adult who is partially or entirely nonspeaking, either intermittently or on an ongoing basis? Typing is a method that really works for many people. This can be done on a computer or by using an app on a phone or other device. There are even programs available that will convert text to audible speech. Others, who think in nonverbal ways, will communicate more easily through other means. Some methods that can help are listed in the main body of the following blog post, and additional ideas are mentioned in some of the the comments at the end of it: 23 Ways To Communicate With A Non-Verbal Child

  Although I've never tried it, so I don't know how well it works and can't give an official endorsement here, I've heard about another device you can also try. Here's a link to a page about it: DynaVox

  I have no relationship, in any capacity whatsoever, official or otherwise, with any companies offering products that provide alternative means of communication and associated methods, books, or devices. These suggestions are just some options, and I strongly encourage you to explore them for yourself, as well to look into others I might not be aware of at this time.

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