Asperger's / Autism Toolbox
About Monkey PliersA SCAdian Little Drummer Boy of Aspie-Dyke Proportions
Well, I'm an Aspie. I happen to like that term; some others of us don't. (If you've met one of us, you've met one, as they say.) There are aspects of my Asperger's that I don't enjoy, but I like having a word that sounds light and fun and that expresses that Asperger's syndrome is part of my total being, not simply a condition for me to be cured of.
I'm capable of good speech and eye contact, and I'm usually friendly towards others when I meet them. These qualities are part of what makes my Asperger's less apparent to others, especially if they don't know me well. Another contributing factor is my reluctance to seem awkward, unpleasant, or out of place when I'm confused or uncertain in social settings. Combined with my processing delays, which might sometimes prevent me from responding right away to the discomforts of things such as being touched, this can make me seem very much like everyone else, at least at first.
I'm a creative sort, and I apply this creativity to my approach to dealing with my Asperger's, as well as my fibromyalgia. I've always done this, even in the years prior to my diagnosis. However, I still struggle with sensory issues; limited working memory; mental processing difficulties; trouble reading nonverbal cues from others and cluing in to other aspects of social interaction, such as managing the timing of turn-taking in conversation or catching on when people are not being serious and literal; regulating my emotions; managing the starting and stopping of activity; functioning in the face of disruptions to my routines, sense of order, or any particular activity in which I happen to be engaged at the moment; handling more than one thing at a time (unless I can organize it into a carefully orchestrated plan, so that it runs like a single activity); seeing the big picture; and other things commonly associated with Asperger's. I also do something that's referred to as stimming (engaging in repetitive behaviors that sort of "bleed off" exess energy, are soothing, or are just plain fun to do) and have "areas of interest" (things I focus on intensely for long periods of time, becoming absorbed in their various aspects to a degree that the average person might find unusual or think of as obsessive). I sometimes have outbursts, meltdowns, and shutdowns, though these are usually relatively mild for me, in comparison to how severe they can be for many others on the spectrum. All these things have been true of me throughout my life.
Because of the relative mildness of these symptoms, as well as the way I was raised and the self-control I've further developed over the years of my adulthood, I'm generally able to "pass" as "NT" (neurotypical, which is to say, not an example of the neurodiversity of which Asperger's is just one type). I'm able to hide, or wait to engage in, most of my stims; behave as though I'm keeping up in every moment of a conversation or other social encounter; reign in (at least somewhat) my tendency to go on, without regard to the level of interest expressed by others, about subject matter that's of interest to me; and push off or suppress my emotional outbursts and meltdowns to a certain extent, until I can either wait it out or get to someplace private where I can let it out at last. I greatly prefer not to put on public displays, regardless of whether or not I'm trying to pass for some reason.
In spite of my ability to pass, I abhor the closet and am very open about my Asperger's under any circumstances in which it seems possible and appropriate. There are many who, for whatever reason, cannot or will not do this. That's okay. I don't mind stepping up and being the bridge between those who feel unsafe being open and those who couldn't prevent others from being aware of their differences, even if they wanted to. I think of it as a responsibility to speak when others might not be able to, or might not be heard if they did, even though I can only speak for myself and not for all of us. We are, after all, very different from each other in many ways. But we're having something of a public image/education issue these days, and I think every little bit that someone can do helps. If that means I sometimes take a little heat, then so be it. It wouldn't be the first time.
I was diagnosed in July of 2012, at age 44. As is common for many late-diagnosed adults, this answered a lot of questions for me and made my life make a lot more sense. As of this writing, a couple months later, I'm still very much in the adjustment phase, during which I'm experiencing a combination of ups and downs, as I continue to discover how this new information about myself is both helping and challenging me. In some ways, my newfound understanding is aiding me in navigating situations that were formerly much more difficult, because I had no way back then of knowing how to approach things with my particular gifts and limitations in mind. I also now know the relief of not feeling compelled to consider my lack of, or lesser, abilities in certain areas to be some kind of moral failing on my part. The challenges come at times when I consider the down side of what it means that, in some ways, there may be no "trying hard enough" to "fix" myself and, at other times, when I encounter, as so many of us do, either those who don't believe in what they can't easily see or those who go overboard in their regard of my difficulties - or whatever they may perceive as being my associated shortcomings. In other words, I can have a little trouble when someone either doesn't believe I'm an Aspie, because they don't see or recognize the signs of it, or when they get that it's true but have... let's call it an overeager, if usually well-meaning, reaction. This is not entirely new territory to me, however, given certain other aspects of my history, such as the fact that I was diagnosed with fibromyalgia at age 19. You can't see it, and, back then, hardly anybody'd ever heard of it before. So far, I'm pleased to report that my experience of being out about my Asperger's has been pretty decent. I happen to have a lot of good people around me, and I've been pleasantly surprised by how well others have responded to what I'd imagine might seem to some of them to be very strange news. Maybe current understanding and acceptance of health issues such as fibromyalgia has helped.
During the roughly year-long process of learning about the autism spectrum, finding a place to get properly assessed, and then actually getting it done, I managed to get involved in the autism community online. While learning about the issues and discovering my commonalities with others on the spectrum, I felt a growing excitement. When my diagnosis came at last, I realized I had a sense of duty. I was benefiting greatly from what I'd learned and the validation of the official diagnosis... and I don't believe in benefiting alone, if it can be helped. This goes back to my activist history in gay rights, feminism, peace, and other causes related to social and environmental justice. My feeling came to be that, after over a decade of attending to matters pertaining more to my own, individual life, I was ready to champion a cause again. At the same time, this one felt more like a cause of my own than any other before it, including GLBTQ rights - as though I were finally coming home to myself. As an extension of my own self-help, I'm taking on ASD self-advocacy now, and I'm only just beginning to discover a whole new world of what that can mean.
So, what else can I tell you? Like many other women on the spectrum, while physically female, I don't experience strong gender identity attachment. In my case, that means a somewhat lumpy stew of male and female, rather than a smooth blend of the two. As a result, for me, "butch" is more than just gender expression. It's spilled over into gender identity and feels true all the time, whereas "male" and "female" each only feel true some of the time, in certain ways, under certain circumstances. But don't worry. If someone either correctly recognizes my physical sex or accidentally misidentifies it, I don't get offended at all. It's usually kind of a non-issue to me, more likely to cause discomfort to someone thinking they've made a mistake, so long as I'm not treated abusively as a result.
How do I spend my days? I combine managing my fibromyalgia and other health issues with pursuing my areas of interest and being as useful and kind to others as I can manage. This actually takes up quite a bit of time, given my need for frequent rest and the slowness with which I'm able to accomplish tasks. I simply do my best. On some days, that means getting a lot done. On others, it means taking a break to catch up with myself, even if I wish I could be doing more.
To be more specific, I deal with my fibromyalgia, and the stresses of Asperger's related problems such as sensory issues, by eating right, supplementing properly, and getting good exercise. I can't say enough about how important this is to me. (And I'll spare you from having to deal with too much of my perseveration on the matter!) Suffice it to say the following: Strength training, with both lighter and heavier resistance, seems, to a certain extent, to push out fibromyalgia pain. Varying light and intense aerobic activity is a great mood stabilizer and serves to increase overall energy availability (though, with fibromyalgia, so much energy is used in getting such exercise that the end result isn't anywhere near as impressive as it might be for someone who's physically healthier to begin with). Proper nutrition, including whatever you need to add to your regular food intake, can make a big difference to anyone. Just don't do anything extreme to yourself. You don't want to overdo and make your system toxic; restrict yourself too much and end up binging; or latch onto too many inappropriate practices that will cause a pattern of unrealistic hope, followed by crushing disappointment and increasing unwillingness to continue making an effort. In the case of fibromyalgia, a bonus of the healthy weight management that results from handling all this well is that you have less to carry around on an already tired body. Furthermore, anyone who's always wanted to look fit and strong, as I have, can get at least some of what they've longed for with a carefully managed program that combines effort with livability. Remember, you won't be able to keep helping yourself if you have to constantly force yourself to follow a plan you hate. You're in this for the long haul, so try to find the right balance.
Because of my need to alternate activity with rest, and because creating and carrying out my health management plan has been the result of it being an area of interest to me, so that my focus on it has been rather intense, attending to diet and exercise has absorbed a great deal of my time, as well as my physical and mental energy, day by day, over the last several years. It can be hard to do much else with my day on a day when I'm being successful with my program. When I'm not being successful, it's more likely that I'm having a fatigue crash or some other problem that's preventing me than that I've been interrupted by something less unpleasant. (Not that having my routines interrupted in general is, in and of itself, exactly pleasant.) However, aside from whatever household chores I can accomplish on any given day (with the aid of my handy-dandy, Aspie-brain-designed chart, of course), I also pursue a range of other interests whenever I'm able. Some involve scheduled activities; others I engage in as the mood strikes me. It's hard for me to do more than one or two during any given period of my life, so I try to cycle through focusing on different ones. That lets me really get into something I like and then move on before I burn out about it. I can always go back to an old interest whenever I want. I can also stay involved in a thing in a more minor way, while pursuing something else, so that I don't completely lose momentum with something I need to keep up with for some reason, such as practicing a musical instrument.
Having said that, what else do I like to do? I play doumbek for belly-dancers in the SCA (Society for Creative Anachronism). I work on this Website and other Web projects. Most social networking sites are too overwhelming for me, but I pop in over at Wrong Planet to join my fellow spectrumites (and those who care about us) in chat, games, and mutual support. I read about Asperger's specifically, and the autism spectrum in general, to further educate myself. I attend to my relationship with my girlfriend, which is an activity that brings me both great joy and deep intellectual satisfaction, as I explore the pleasures, intricacies, and challenges of being close with a romantic partner. I don't watch a lot of TV or see many movies, but I'm selective, so I get a lot out of what I choose to view. I enjoy music immensely, and I find that I sometimes like to stim by playing a song I especially like over and over again. With the right tune, under the right circumstances, this can sometimes even give me a feeling of euphoria. I also like to meditate - having developed my own style - which calms me; increases my ability to focus; and helps me to view myself and my feelings with the right kind of detachment, so that managing my everyday emotional life is easier. (This is an activity I'd like to engage in more often. When I'm into it, I'm really into it. Unfortunately, my difficulty in pursuing more than one major activity at a time causes it to fall by the wayside a lot more often than I'd like. That seems ironic to me, given that meditation helps restore balance to a person's life. But sitting there takes energy, and I only have so much to go around. Good thing the effects of engaging in periods of it are so lasting.) I spend a great deal of time alone, and this is necessary for me. But I'm also happy to go out and be with friends, once I've gotten past the initial adjustment of encountering new people in any given group. Even then, being with others can be confusing and difficult sometimes. But rising to the challenge can be a thrill, providing me with a sense of accomplishment after the fact - especially now that I'm better at dealing with the kind of post-socializing anxieties Aspies often face. I'm something of a "social Aspie" and have had understanding people and how to navigate socially as an area of interest for quite some time.
I have an active spiritual life. In my late 20s, I wrote and self-published a short treatise on my beliefs. In my 30s, I made my little book available for free on my first Website, so that anyone could read it. I also wrote a number of articles expressing my views as they related to those beliefs. Because I had the room there, and it made things easier to do it this way, The Asperger's / Autism Toolbox site, while intended to stand on its own, is hosted within the same domain as that original site. It's called The Wayshelter. It's set up kind of like a house, so it has different sections, many of them presented as separate rooms. The part dealing with my book and associated writings is just one of them. If you decide to go exploring there, I hope you enjoy what you find.
I'd like to thank you for visiting my site and for taking a little time to get to know me. Stay tuned as I get more involved in my self-help / self advocacy efforts. I intend to eventually start writing about my thoughts and my adventures, so keep an eye out for developments in that part of this site.
A shout out to my high school, which provided an environment that encouraged self-discovery, self-directed education, and the coupling of developing one's individuality with responsibility towards others. It was exactly what I needed. I think having had that experience has made me a much more capable person over the years.
I'd also like to take this opportunity to express my appreciation for my friends, who've watched me go through this most recent process of self-discovery, providing support and understanding when I've needed it. In addition, I've often benefited from the kindness and concern of people I knew very little or not at all, simply because they were either in the right place at the right moment or because they happened to work in a place from which I was obtaining services of one sort or another. Whether I said it at the time or not, thank you.
To my family, I'd like to say thanks for a lifetime of helping me to grow and develop into someone who can face the struggles of my life with strength and courage, as well as more than a bit of humor. To my father: I owe you so much of my interest in nutrition and fitness, as well as my ability and inclination to carefully and methodically pursue the knowledge I need on my own, so that I can decide for myself on the right combination of products and practices for me. To my mother, who passed away in the spring of 2001, much love and gratitude, not only for having risen to the challenges of raising me, but also for having inspired me by your own efforts to work on yourself when you realized you wanted to improve yourself as a person, and, finally, for having grown with me from sharing a mother-daughter relationship to one of being friends. From both parents and both sides of my extended family comes my intellectual ability in general, as well as my lifelong love of learning and creativity. To my sisters: YOU ROCK! I couldn't have asked for better! I may not always be able to take the initiative and be the one to get in touch, but you are truly powerful allies, effective advocates, and good friends. Thanks for all the caring, support, and fun times. To my niece and nephews: I'm so excited to watch you growing up into the fantastic adults you'll one day become. You're already such wonderful people!
Last, but far from least, thank you to the love of my life. I don't know where I'd be without you. It can be scary to be loved. It can be hard to be close. But you've made it possible for me in a way that no one else ever has. I love you with all my heart, even when I'm being, well, interesting. I love you when we're taking turns "being two" and having our respective tough times. I love you when we're out having fun, when we're having quiet times at home, when we're doing separate things and I'm just thinking about you... Yeah, I'm going on a bit here. So, I'm a romantic. You don't have to gush all over me in return. Just tuck away in your heart the knowledge that, after a dozen years together, I'm not tired of it all yet. Oh, and check for the next creative smiley face, likely to be found somewhere on your laptop lid or mouse pad.
September 21, 2012
The Mental Workings of Monkey Pliers
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