Asperger's / Autism Toolbox
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Connecting with Spectrumites in the World Today
A Post by Monkey Plierson November 26, 2012
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Asperger's / Autism ToolboxH EO M Connecting with Spectrumites in the World TodayA Post by Monkey Plierson November 26, 2012 View Blog Listings |
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When I first began to learn more about the autism spectrum from the perspective of someone who might be on it, I was surprised to learn there were certain politics surrounding the issue of autism. This is not to say I was surprised to discover there was controversy concerning any specific aspect of the issue. Of course, any medical concern can have turbulence surrounding disagreement over things such as cause and treatment, as well as the feelings of those affected by the condition. But my perception of autism was shaped by the public image to which most of the general population had been exposed. So, what I didn't know, in my ignorance about this condition with which I had yet, at that time, to be diagnosed, was that there was a whole community out there, made up of individuals struggling to be acknowledged and respected, that had many elements in common with other undervalued communities throughout history and the world. As someone who's already had the experience of identifying as a member of multiple groups of people engaged in that same struggle, I began to look at the situation more closely. So, what do we have here? We have a range of individuals, many of whom, in their self-awareness, identify as members of a distinct collection with a common identity. That community is a minority that experiences life in certain ways that are not common to the majority and includes a significant number of members who feel there have been ways in which we've been treated (both in the medical and in the societal sense) that ought to be rectified - hence our struggle. In our communications with each other, largely aided by computers and the internet, we have revealed to each other and discussed our concerns and our efforts. Out of this has been arising a movement, though it's hardly recognized by the majority at this time. Sound familiar? As different as we can be from the majority, this state of affairs is something we have in common with others who've felt not only that their personal circumstances have presented them with challenges in life but that the rest of the world's way of relating to them has, all too often, been marked by oppression, abuse, and neglect, while their cries to be heard and demands to have their grievances redressed have gone unnoticed or been put down. Interestingly, if you consider that pretty much everyone spends at least some part of life belonging to a group that's had many of its members suffer in such a manner (by being children; becoming elderly; or having to manage an at least temporarily disabling condition, such as a broken bone or severe illness), this is one way in which we're actually just like everyone else. So far, there's been a campaign to raise awareness of autism itself, with the awkward, to say the least, notion that we should let it somehow speak. Lost in all of this has been the idea that it might be nice for others to be more aware of those of us who are on the spectrum, because autistics themselves might have something to say. But that's beginning to change. Many spectrumites have finally been able to come forward to address the issues, either by verbal or electronic means, both in person and through use of the internet. From children to late-diagnosed, older adults, we're expressing our feelings, ideas, and opinions. We're describing our histories and current experiences. We're illuminating our struggles and successes. We're critiquing, making suggestions, and letting people who've listened and helped us in ways we find effective know of our appreciation. Before you go worrying about whether or not there's an "epidemic" on, before you start casting about for something to blame for our being "trapped" or "locked away", before you settle into viewing us as enigmatic puzzle pieces and start fretting over whether or not we can ever be "solved", please take advantage of the opportunities that now exist for checking in with us about how we view things. We don't all feel the same way, and some might take a "cure" immediately, were one available. But many of us would think of such a thing as more of an assault on our being than an aid to our existence. This difference, it should be noted, isn't necessarily dependent on what others might consider to be our level of functionality - which leads me to note that there are those who would simply like relief from certain aspects of their autism, while leaving other aspects intact. For myself, I can say that, as hard as it's been for me to deal with my particular limitations, as much as I've suffered from misunderstanding (which runs both ways), and as much as I'm having to relearn how to cope with various environments and such, now that I'm aware of why they make me so stressed and uncomfortable, I do not suffer from autism itself. Autism is generally seen as being some kind of dragon, keeping a princess prisoner in a castle. I don't see things this way. I'm gay, too. But I'm not held captive by it. It's simply who I am. And that's how I perceive my Asperger's, which is my form of autism. I don't need to be rescued from it. It carries both gifts and disadvantages, and I certainly don't need to be rescued from myself for, in this sense, being just like everyone else: having strengths, areas I need to work on, and some stuff about me that just plain is the way it is. People grow and change over time. But wanting to excise such a major, integrated chunk of a person's selfhood essentially constitutes wanting that person not to be. If you don't want me as I am, you don't want me. You want somebody else, and you'd like me to become that person for you. To help you make sense of this, consider that lots of people would like to eliminate their weaknesses and the problems they have to face. That's why there's a whole story from long ago about people being allowed to hang their troubles up on the limbs of a tree. They had permission to take down from the tree any set of troubles they chose and carry on with life dealing with them. The only rules were that, if they really decided to trade, they had to give up their entire set for someone else's entire set - no one could select from various sets to create a new collection - and, whatever they took, they were going to be stuck with that set from then on. When all was said and done, everyone ended up going away with the set with which they'd started. That's right. Not one trade took place. Once they'd had a real look at what other people's lives were like, their own troubles no longer seemed so much worse than everyone else's. Oh, and one more thing: Now imagine if the trade had also involved giving up one's advantages, capabilities, and pleasures, right along with one's troubles and pain, and you'll see even better why the idea of curing autism has such limited appeal amongst so many who are on the spectrum. It's a funny thing about the brain. Sometimes the source of a strength can also be the source of a corresponding weakness or flaw, and vice-versa. Hey, I didn't design it. I'm just delivering the news. Hyper-focus is great for working on detailed, involved projects. It's terrible for getting anything else done during the same period of time. Perseveration will keep you from giving up and wandering off during study, a lengthy task, or a deep discussion. It can also keep you from knowing when to quit and move on during a casual conversation or when to take a break to take care of yourself and others. Not being aware of or seeing the need to follow social convention prevents you from being a slave to the whims of consumerist trends and to foolish prejudices. It'll also sometimes get you into trouble and cause you to appear rude and obnoxious, in spite of whatever your intentions may be. On/off emotions can give you intense passion towards your interests and profound enjoyment of life. They can also cause you to freak out the people around you. If you're not sure you can even begin to imagine how someone could feel comfortable with such a "terrible affliction" as autism, you've fallen prey to some hype, I'm afraid. In which case, it appears to me that perhaps it's you who's being held captive. I invite you to break free! There's a whole world for you to explore, full of interesting people you can get to know. You'll have to start learning how to meet us on our terms. But just think of it as being like learning a new language or visiting a new place. You could let your understanding of another land and its people come entirely from what someone else says they've heard or from the few goods sold to you at a local gift shop, allowing yourself to be limited by exposure to only another outsider's account or that which finally makes it to you through a profit-making enterprise. Alternately, you could bring yourself to the journey. It's up to you to discover where the richness of life is to be found.
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