Monday, January 21, 2013

"Not That Autistic"

Sometimes, well-meaning but clueless people tell me that I must either be "not that autistic" or "mild" or some such because they didn't instantly clue in to my condition pre-disclosure. It happened a lot when my diagnosis was fairly new and I was first disclosing to my peers and coworkers. In a couple of cases, I even had family members that tried to tell me that my diagnosis was mistaken or that they did not see the traits, and since they'd known me so long, they would have picked up on them.

This essay is not about them. I don't harbor any long-term ill feelings about people who had one image of me finding it difficult to adjust their image. I understand that some level of cognitive dissonance is bound to happen during this transitional time, as they revise their appraisals of some of my eccentric behaviors and they come to see things that they thought were preferences or choices as compulsions and/or automatic behaviors. That's fine. I don't even harbor ill will toward the family members who tried to convince me that my diagnosis was wrong. After all, the fact that they failed to notice that I needed help for so long probably made my disclosure seem a little like an accusation. If so, they were wrong to interpret it that way, but I understand how they did.

This essay is about the people who tell me that I must not be "that autistic" because I speak in public for a living, dress professionally, and manage to make it through the work day without flapping my hands and fidgeting. It's about the people who think that my ability to clamp down on every impulse, conscious and subconscious, that my body is screaming at me to indulge in, is somehow the same as not feeling those impulses. People who think that my ability to ignore my symptoms as a way of managing them is the same as my not experiencing symptoms.

I'm well aware that my willpower and my training, some of which was quite painful to me, sets me apart from some autistics. I'm not trying to say that I have exactly the same challenges that someone who needs AAC or facilitated communication has. I also know that there is such a thing as being "visibly autistic"--having muscle weakness that leads to posture, gross motor control, and other issues that make your condition unmistakable under all circumstances. And I am aware that it is a privilege that I do not have to deal with these issues.

That does not make the issues I have to deal with less important, though. Especially not to me. And it does not help improve things for people who need alternative communications technologies, FC, and other accommodations when people assume that my case is qualitatively "better" than theirs, because it robs them of agency. It turns the "visibly autistic" into victims, which is to categorize them in such a way that it reduces expectations for their outcomes and, as such, goals that their educators, parents, and physical therapists will set. Not all of us can be Carly Fleischmann, Temple Grandin, or John Robison. But most of us will never know how close we can get if we are marginalized.

Oddly, it is my communication with people who are usually perceived as "more autistic" than me that is usually easiest for me to accomplish. This is because, between us, I often feel like I can acknowledge my privilege as an autistic that is capable of passing for short periods of time, whereas when I am around a mostly non-autistic peer group, I often feel as if I have to defend my diagnosis to keep them from running roughshod (inadvertently or no) over my needs. When I am around others like myself, no matter which symptoms they experience or the severity of those symptoms in comparison to myself, I feel like we can understand each other, and I feel less self-conscious about what I am able to do (and what I am not).

Part of my goal in all of my writing is to shed some light on the long-term difficulties inherent in being mostly invisible. This is not to claim that my challenges are "more" than other autistics. Instead, it is to add my voice to a choir. A choir that, as of now, is not fully representative of the range our voices should have.

We need to take a page from intersectional feminism, as a community. We need to acknowledge that symptoms, living conditions, and outside demographics such as race/ethnicity, socioeconomic status, and gender have a significant effect on our experiences as autistics. This is something that the trans* community has been much more successful than we have been at articulating. It is something that we should learn how to do, because it is useful. It shows that understanding can not come through an approved narrative, because that narrative is not truly representative of the range of problems we face and the ways that our privileges (and lack of them) can complicate our challenges.

We need more blogs, more participation, and more space given to the "visibly autistic", especially those who are nonverbal but capable of typing. We need discussion that centers around our unique range of sexualities and perceptions of gender. We need to stop letting the conversation be dictated by the parents who are focused on the challenges that parenting and caregiving (sometimes for the entire lives of their children) are posing to their lifestyles and long-term goals. Their experiences are important, and their voices need to be included, but their agendas are not our own. Neither are the agendas of the "cute aspies" who mostly fit in and who easily assimilate this information into their lives and then move on. Their stories are mostly being shared already, and they are important, but it will hurt us in the long run if we allow the public perception of autism to be divided between the "low functioning" and the "high functioning". There is a vast, expansive terrain in between those viewpoints that needs to be charted.

Most importantly, it needs to be charted by those of us who keep eyes on the way that our other life circumstances affect our ability to access support, resources, and even diagnosis. We need to be ready to discuss challenges without playing the "more disabled than thou" game. We need to value each other's voices, and we need to be open to discussing the private aspects of our experience that do not have a place in the current narrative. Some of us are parents. Some of us are even parents of autistic children, and we are facing a peculiar crossroads wherein we must balance our own disabilities against the needs of our children, and we must make choices about how to guide their perceptions of themselves as they construct their identities.

I'll start by telling my story, both literally and figuratively. I'm going to be adding more memoir-based posts here, in addition to the neurodiversity and social justice posts that I have been putting together over the last few months. I'll also be writing more about Clay, who is a parable about the ways that mainstream education and neurotypical social expectations can silence us and render us invisible. Lastly, I will be putting together a book-length memoir about the process of coming to terms with my diagnosis.

Let me kick things off by re-introducing myself. The last time I wrote an introductory post, I didn't quite have the distance from my diagnosis or the vocabulary to do this right:

My name is Mike, and I'm autistic. I'm not comfortable saying "I have Asperger's" or calling myself high-functioning. I have ritualized behaviors that cause me to lose days and sometimes weeks to compulsive video game playing, sorting and re-sorting collections like my book and vinyl record collections, and even occasionally exercising to exhaustion.

I can talk for extended periods, but the more tired I get, the more my speech impediment slips out. It starts as a stutter, then I go tonally flat, and eventually I lose control over my enunciation and start to sound like the stereotypical autistic. Usually I also get frustrated and have a hard time keeping myself from shouting when this happens, because I stop being able to say the words I intend to say, and instead I insert similar-sounding but incorrect words, like saying "speak" when I mean "steep". When it gets really bad, I will be able to see the word in my mind's eye, as if I was silently reading, but I will not know how to say it out loud.

When I was younger, I had a severe problem with self-injuring. This included cutting myself with a razor, sharpened pencil, pen knife, or even a sharpened mattress coil. Many people thought that I was a teenager acting out by cutting myself when I did this. Those same people failed to notice that when I was a small child I would beat my head against the wall, punch myself in the head and chest, and dig at my skin with my fingernails. As a teenager, I picked up the habit of cutting because it allowed me to self-harm while blending into the expectations my peers and parents had. Ironically, my cutting was usually written off as attention-seeking when it was actually attention-avoiding. I have successfully avoided cutting since I was 21 years old, and I have avoided other forms of self-injury for five years now (with the exception of the occasional wall punch). It took breaking the fine bones in my right hand on a concrete floor to finally give me the willpower to resist those compulsions.

I have no trouble finding work or meeting my employers' expectations for performance, and I have never been fired for failing to report on time or for breaking the rules. I've also never been offered a full-time benefits-eligible position, and no one can rightly explain why. I have even had people express their exasperation at my inability to obtain one while occupying positions that would allow them to offer me employment (and not doing so). I've had other people, including some I still work for, honestly do their best to coach me and to help me into the job market, but still fail to get me over that final hurdle.

I published my own book because it was easier to learn to do my own copy editing, layout, marketing, and to manage my own distribution channels than it was for me to navigate the social waters of seeking an agent and submitting work. I'm also working on starting my own retail business because teaching myself accounting, marketing, and the basic mathematics necessary to estimate my reselling markup on antiques and collectibles was easier than continuing to apply for jobs.

If you talk to me for longer than thirty minutes, I will start to noticeably twitch and to look for an escape from the conversation. If you want me to prepare your quarterly tax return, I will do the entire thing without needing a break and then ask what else I can help you with.

I work a series of part-time and freelance jobs right now because they allow me to avoid being out of the house for more than four hours, because it makes me intensely uncomfortable and tired to be in the workplace for a full day. I can work six twelve hour days per week without losing focus on my writing so long as I get to make my own hours, nap when I feel overwhelmed, and avoid having to speak out loud.

Oh, yeah... that talking thing. I do it flawlessly for short periods and passably for longer ones, but I don't like it. If I was allowed, I would teach by projecting a blank Word document, and I would take questions from students and type the answers. I find it less awkward to do that, and I can type faster than I talk. I don't try to do that, though, because my career as a teacher is not about my making the classroom more comfortable and accessible for me, it's about my making my classroom more accessible and more comfortable for my students.

I was not diagnosed until my late twenties, partially because I was not diagnosable until my teen years (due to the definition of autism at the time), and by then my father was divorcing my mentally ill mother while his business failed out from under him. I spent several years taking care of my siblings, and then I left home at the age of seventeen so that I could live without having to worry constantly about the needs of everyone around me. I created a bubble of cheap lifestyle, low expectations, and compulsive research of my own special interests for nearly a decade. I was thoroughly insulated from the realization that my goals, needs, and desires were different from everyone else's.

Until I wasn't. Until at nearly thirty, I had no car, had a master's degree but no job, and had a broken hand.

I'm Mike. And I'm that autistic. And I'm sick of other people telling me that I'm not.

I'm also opening my blog up to submissions. If you are autistic and you don't have a platform for yourself, email me your story. I will publish one every Friday if I receive a submission. I don't promise to publish every one I receive, but if they are short, I may publish several each week.

If you do have a blog of your own, then I have a new guest posting policy, and I'm especially interested in trading posts.

We need more voices.

This essay also appears in The Real Experts: Readings for Parents of Autistic Children (Autonomous Press, 2015).