Over the past several weeks, I've been trying to do some healing. Not just from my mother's death, but also from the trauma of spending 10 years in schools where it was not possible to be open about any aspect of who I am, from big stuff like my sexual orientation and religious views, to small stuff like what bands I liked or what clothes I really wanted to wear. I grew up as a turtle, learning to hide in a shell of fake normality, only coming out in the safety of my own room. To the outside world, nothing about me was ever right. (To any who had a fine time in public schools and doubt that it was as traumatic as I claim, I can only say that you were lucky to be less strange than I was, and to go to better or at least more liberal schools than I did.) The only way to heal from the desperate need to hide, so far as I can tell, is to refuse to hide any longer. So I need to dust off the aspects of myself that I've shoved back into dark corners for so long, and bring them out into the light. My autism is only one of those things, but since it is the most difficult to keep hiding, I figure it's a good place to start.
But You Don't Seem Disabled
First off, I don't consider myself "disabled" (as many autistic people don't), although in some situations my specific autistic traits can feel disabling. I am sometimes perceived as being "off", especially if I am spaced out or rocking or something, which can be mistaken by strangers as signs of mental retardation, mental illness, or just being a ditz. Mostly, I just see autism as a set of needs I have to think about, just as anyone does. My particular set just happens to have a name. It doesn't stop me from doing anything I want to do. I just sometimes have to go about things a different way, or think them out a little more carefully than most people would. That can be frustrating, and it can be extremely frustrating to have people assume I am unintelligent or needing of pity before I ever say a word to them. Ultimately, most of the problems my autism causes are not a direct result of who I am, but are instead a result of not being who society says I should be. I believe that when large swaths of people are excluded from fitting into society because of who they naturally are, it is society that needs to change, not them.
Do You Mean You Have Asperger's?
Of the various "disorders" the autism spectrum is broken down into, the description of Asperger's fits me the best, yes. But lately I prefer to refer to myself as "autistic", for a few reasons. One is that, while I am certain I am on the spectrum somewhere, I've never been formally diagnosed as having a particular disorder, so for me simply saying I am autistic or on the spectrum feels more honest. Another reason is that I grew up always seeing myself as "a bit autistic", because that was the best way I knew to describe myself. I didn't learn about Asperger's until my late teens, at which point a LOT of my life began to make more sense. I tend to squirm away from the word Asperger's lately, because there are so many misconceptions about what it is. The biggest reason, though, is because when I talk about autism, I'm not talking about something I "have." I'm talking about something I am. Autism is not something that can or should be removed from me any more than my queerness or my sense of humor or my heritage. Without it, I would be someone else. "People-first" language has its place - my mother, for example, did not like her disabilities to be tied to her identity, and those who feel this way should be respected - but there are some communities, notably the autistic community and the Deaf community, who embrace what society calls a disability as an integral part of who they are. We should be respected, too.
Oh, You're One of Those
Yes, I am one of those "internet-diagnosed Asperger's" people. The thing people need to understand is that, while Asperger syndrome was first described in 1944, the papers were never translated into English until 1991, and it was not included in the DSM-IV until 1994. Thus, people of my generation, especially girls, were very unlikely to be diagnosed. Even back in 2002-2003, when I was actively pursuing a diagnosis, Asperger's was very little-known, and I found myself explaining it to counselors who'd never heard of it before. The best I could get was "It does sound like you, but I'd have to do more research." So please, do have some sympathy for people who self-educated and self-identify. A few unscrupulous people have co-opted the label for themselves to seek attention or make excuses for bad behavior, but they are a minority and should not be used to gauge us all. Most of us are simply seeking the vocabulary to name something we knew or suspected to be true all along.
I Don't Believe In That/It's Just a Label
I get where you're coming from with this. As I've said, I believe something is only a disorder when it causes distress, and for many (but not all) people, Asperger's/high-functioning autism only causes distress because society is not currently set up to accomodate a wide range of personalities and ways of being. However. The plain fact is that, with the way society is currently set up, a large group of people find that the way their nervous systems function leaves them struggling to fit in, struggling to find basic things they need such as employment, housing, friendship, love, and safety. To deny that such a struggle exists is to invisibilize these people and make it impossible for them (us) to receive any accomodation, assistance, sympathy, respect, or understanding. Without the vocabulary to name ourselves and our struggle - which is a positive and important use of labels - we cannot find each other, cannot advocate for ourselves, and cannot explain how and why we are different, why we can't help it, and why it is not up to us to change ourselves. So please, embrace neurodiversity. Accept us as part of the natural continuum of human experience. But recognize that in order to get all of the world to see us that way, we need a flag to wave.
Oh, You Poor Thing, I'm So Sorry
I'll let Jim Sinclair field this one.
What Can I Do?
I don't need pity, but there are things you can do to make life easier for me and for other autistic people you may know. In my case, the things you can do are:
Understand that I have an upper threshold on how much socializing/background noise/stress I can handle, that this threshold is lower than it is for the average person, and that once it is breached, I must devote all of my attention to taking care of myself and am no longer capable of considering your needs.
Understand that in choosing to socialize with you in the first place, I am giving you one or more of my spoons (because by socializing, especially face-to-face, I risk overtaxing myself). Recognize that being given a spoon is a special gift and a sign that I do care very much about you, even if I sometimes have difficulty perceiving or responding to your exact needs.
Learn to recognize the signs that I am becoming overtaxed, such as rocking, staring into space, looking very uncomfortable for no apparent reason, or appearing to ignore you. Recognize that, while I am ultimately responsible for taking care of my own needs, I require some personal space, time, and freedom in order to do that. Allowing me those things will make things more pleasant for everyone, I promise.
Realize that, while my social skills have improved greatly since I realized I was autistic, good social skills are something I have to actively work at. This does not mean you should let me get away with intentionally treating you badly, but do realize that when I say something that sounds rude or awkward, I often have no idea that it does. If I dislike or am angry with someone, I tend not to be subtle about it, so if my signals are unclear it's pretty safe to assume I am doing the best I can to be friendly and nice.
Realize that "tough love" can feel detrimental or abusive to an autistic person. We simply don't respond well to that kind of treatment, for a variety of reasons, not the least of which is that we tend to interpret things quite literally and cannot extrapolate loving intentions from apparently unloving behavior. Even if we *can* read your good intentions, you are probably just going to make us nervous and afraid of you.
To paraphrase Pat Parker, the first thing you do is to forget that I am autistic. Second, you must never forget that I am autistic. What this means is that I want to be perceived as a regular person with real and valid thoughts and feelings, just like anybody else, and I do not wish to be defined by a single aspect of who I am. But autism is also inseparable from me, it influences what I do, and if you wish to understand me, you need to be aware of it.
Find out why so many autistic people feel that people such as Jenny McCarthy, and organizations such as Cure Autism Now and Autism Speaks, do not speak for us and should not be allowed to. Do some research on your own and do not rely on me or other autistic people to educate you completely. I like talking about autism most of the time, but I am only human. I get burned out. I cannot be "on" all the time. Meet me halfway.
Finally, the most important thing you can do is to see me for no more and no less than what I am. Let go of the stereotypes about "lack of empathy" and math wizardry and "super male brains" and Rainman. Learn about autism from autistic people. Listen to our stories first, before the stories of the media and "experts" and well-meaning but misguided parents who just wish their babies were normal.
Where Can I Learn More?
Read anything you can by Temple Grandin, Tony Attwood, Valerie Paradiz, Liane Holliday-Willey, Jim Sinclair, Alyson Bradley, or any other author/advocate who is autistic or a trusted ally to autistic people.* See them speak, if you have the chance.
Read the forums at AsPlanet or Wrong Planet. Take the level of anger there with a grain of salt, as places where autistics gather tend to also serve as venting spaces, but do recognize that the anger and frustration are real and valid, even if it is occasionally based on misunderstanding.
Read at OASIS.
See Mozart and the Whale and try to appreciate the beauty in the couple's quirkiness. Keep in mind, however, that all movies are written for entertainment and thus tend to play into stereotypes. Take it as a story of how two individual autistic people could be, not as a documentary.
How Many Closets Do You Have, Anyway?
Oh baby, I've come out of so many closets Tyra Banks could fit her whole wardrobe and have space leftover. There are more, trust me. But this was a pretty dank one. I feel better now *grin*
*Note the prevalence of women in this list; the only man, Tony Attwood (Jim Sinclair is intersex and agendered) is an expert rather than an autistic person. A full discussion of the prevalence of autism among female-bodied persons is beyond the scope of this post, but suffice it to say that the oft-quoted three-to-one ratio of autistic boys vs. autistic girls is almost certainly vastly overestimated.