Think Inclusive had a very interesting guest blog about passing, the pressure to do so, and the choice not to last week. I loved it. It was exactly as confrontational as it needed to be, refusing to pull punches about important issues. Around the same time I found that, I also ran across Stuart Duncan's post, where he talks about the issues revolving around "getting fixed" by therapists. As I considered the points being made in both posts, something started to eat at me, and I didn't quite know what my problem was, at least not until I found this article over on Brenda Rothman's Mama Be Good on how the autism narrative gets framed. Then it all fell into place.
Rather than rehashing her argument, I'd like you to just go read it. Go ahead. It doesn't take long.
Okay. Now, here's the thing: If Brenda's right, then the issue of passing vs. not passing (or not trying to pass) is a lot more important than a lot of people think it is. After all, as autistic adults, this is not our issue, it is our life. We're not a social cause. We're not someone else's problem. We're just people who are trying to get along. That's why, for those of us who are privileged enough to pass, the temptation to do so is so great.
I Can Pass
I can do it. I was trained very well to fit in. Even though I was not diagnosed as a child due to the DSM-III making no room for people like me on the spectrum, my behavior was still far enough from "normal" that the school and my doctors told my parents that I was not developing "as expected." My parents then began a relentless program of suppression. I was taught to hold back my urge to stim, to look people in the eye, to use polite language, to follow directions when I got them and not when I wanted to, and to obey authority.
That last part was really important to them. Even if I could not understand why I was being told to behave in a certain way, it guaranteed that I would comply. Thanks to that approach, I passed for years. I even started to have girlfriends on a "normal" schedule, basically by aping the behavior I observed around me in order to:
- Have the hope of satisfying my budding sexual urges with an enthusiastic someone.
- Avoid seeming so out of place that people started to "wonder" about me.
- Have something that other boys my age could identify with that allowed them to open conversations with me (since I didn't play sports or listen to popular music).
If I'm being honest, I have to confess that for years prior to the autism diagnosis, I yo-yo'd between sexual identity crises, questioning my own sanity, and blaming other people for my own problems. I knew that the life I was living was a bad fit, but I could not figure out why. The closest things I could find to an explanation were the coming-out stories of gay friends and bloggers, but I wasn't gay -- I just shared their sense that of living some kind of mad lie.
I know that it's not a good idea to continue to popularize the self-injurious invalid image of autism, but I did have my times where I would go into full-on head-bashing frustration outbursts. Now that I am well and truly past that point in my life, I can't help but notice that there's a recipe to those outbursts:
Suppress everything that you are naturally inclined to do for nervous movements -- all of it. Force yourself to be still. Don't blink. Now, while you're concentrating on doing all that, try to express emotions. There's no room to do so. So, if you let go and let yourself do those nervous things, I'm going to punish you. Suppress those emotions, too, so you won't get punished. Now keep suppressing them. For weeks. For years.
Now, how angry are you?
I'm convinced that my passing drove those behaviors. Now that I've been given access to help and support, I could probably pass without getting angry -- but now, I would not be passing 24 hours a day, even when I'm alone. I could do it, though, because now I know to go off on my own and to do the things that relieve my anxiety and my distress before they escalate.
I'm Not Going to Pass
Even if I can do it, I won't. Partly, I won't do it because it's just too exhausting. For a while after my diagnosis, I continued to let myself drift through work and social situations on my scripts -- to function like I always did. I took my quirks out of a mental box when I got home, and I let myself express them in private. What I noticed was that I could pass as normal, but I could never bridge the gap that allowed me to make friends, to confide my problems to people, or to seek help when I got confused. Every time I failed to understand something, I felt myself confronted with a choice: come out about my condition, or figure it out for myself.
There was a lot that I was able to figure out for myself, but it was a drain on my time, my energy, and my ability to function. If I had been in one of those unfortunate situations where it would have been unsafe to come clean, I could have done it for a while, but it severely decreased my ability to function outside of work. Every day when I came home, I would just fall asleep on the couch or on the floor. I didn't write. I didn't play video games, even. I just came home and ... stopped.
Eventually, I had to face the fact that if I wanted to get anything more out of life than subsistence, I needed to reclaim some of the energy that I was spending on fitting in. I made an inventory of everything that my job actually required in terms of interpersonal skills, communication, and team management. I identified what behaviors I actually needed to embrace in order to do those things, and I just jettisoned the rest. It was a risky proposition, at first. I teach, and I had no idea whether or not my students would be responsive to a disclosure. Hell, I had no idea how the administration would respond. Still, I knew that if I did not disclose, I was not going to survive.
I waited until a new semester started, and then I took the plunge. On the first day of the session, right after I introduced myself and handed out the syllabus, I made this declaration:
"Before it becomes an issue, I just want to let you guys know that I am autistic. I don't get nonverbal cues very often, and sometimes I can't tell what the tone of my own voice is. I'm probably going to remember your name and the subject of your paper before I can identify your face, and if I don't look at you while we talk, it's not because I'm not listening. I want to help you in any way I can, and sometimes that means I have to look out the window or close my eyes so that I can concentrate on understanding what you want me to do to help you. I'll meet with anyone before or after class, I'm on my email from nine a.m. to nine p.m., and I don't mind re-explaining concepts that you have trouble with. You just need to know that I'm going to act weird while I do it."I was nervous the whole time I said that. I stammered -- something I don't usually do. I waited for questions, and then I went ahead with the syllabus. By the end of class, it occurred to me that if everyone dropped my class, the university would bump me from the teaching schedule and discontinue my salary. I was sure that a few people were going to decide that working with me would be too much trouble.
No one dropped. At least, not right away that day. And the drops I did experience were no more drastic than they always are -- right around the 15-20% mark. (Out of 20 people, at least 3 will drop either due to scheduling conflicts, transferring to a section that meets at a better time, or family issues -- that's just a given for the classes I teach.)
As the semester progressed, I noticed that the students who were having trouble were staying later and asking more questions. After a few weeks, one of them even told me that she didn't like the class at first, but that she had decided not to drop because she had a son with Asperger's and she felt like I would probably work with her family situation more than some of the other teachers might.
Since that semester, I have always disclosed to my students what my situation is, and I have more-or-less used the same spiel each time. Not every group has responded to me as generously as the first group did, but I feel like my disclosure prevents miscommunications that might otherwise hurt the classroom process. I've also made more of an effort to disclose to my supervisors when I feel it's appropriate. While there are some people that I have not directly sat down with and told, it's not something I keep secret, and when I find myself in a situation where I need to disclose, I feel comfortable doing so.
Last year, I took the plunge and started blogging under my own name. Even if there are people at work that I haven't disclosed to directly, it's not like they would be able to read this and not get it.
Why I Don't Pass
I choose to disclose my situation because it makes me more comfortable. If you can't say that, then don't worry: I'm not trying to push everyone to come out. I do believe, though, that the narrative about autism is defined by what is said and what is not said, and I do believe that if you can join the conversation openly, then you should. If you can make the burden of others lighter, or if you can reshape the way others understand the diversity of humanity, it's your job to do so.
That being said, for a lot of us -- it is not safe. There are workplaces out there that are hostile to disability. There are companies that will use "at will" employment to push out misfits. There are myriads of harassments, both subtle and overt, and if you would put your ability to make a living or your personal safety at risk by living openly as an autistic, then you are right to keep your condition to yourself. I'm not here to judge you, and no one else should be either. I do hope that, for those of you in these kinds of situations, you find a way out so that you can safely contribute to the broader discussion about our needs and issues.
That being said, while I do tell people I'm autistic, and I do tell them what I can and can't understand in terms of social cues and implied meanings, I don't ask for any special accommodations under the Americans with Disabilities Act. I happen to work for an employer that does not hamper my use of headphones when I need to concentrate, that does not require me to be on site unless I'm teaching or holding office hours, and that lets me complete my tasks more-or-less on my own schedule as long as I hit my deadlines. If I did not already have those things, then I might need to ask for accommodations. Since I work for an employer that already meets my needs, though, I don't feel it's necessary to go any further than just telling people "I'm not going to look at you while we talk, but it's because I'm concentrating on what you say and thinking it over."
I know not everybody can avoid asking for accommodations. And I also know that for some employers, these can be part of the issue -- some people view them as "special treatment", and it can breed resentment and misunderstanding. As I said above, if my employer was not already giving me what I need, I'd probably be in trouble. This is why it's important that more of us lend our voices to the discussion, though. If employers see those of us that can work without a lot of extra accommodation, then they won't be as afraid of "the challenge" of working with us. And, most importantly, when they see what we can do, then they might be more inclined to take autistic applicants seriously, even when they do need more services.
That being said, the real reason I don't pass is because I want to feel free to be myself without having to mirror the behavior of the people around me. I need them to know that it's not that I am peeing upon their social conventions from a great height, it's that I don't notice or understand some of those conventions. I want them to know that there's a difference between "autistic" and "unemployable." That's why I also live and die by one principle when I'm working with others.
"Not Passing" Does Not Mean "Not Being Polite"
I can't count the number of times that coming right out and saying "I have no idea what you are asking me for" has actually saved the day for me. I used to be afraid of saying that, because I felt like I was stupid if I couldn't understand something. Also, when I was a kid and my parents asked "Do you understand?", responding with a "no" usually caused them to roll their eyes and then to either explain it again in baby-talk or accuse me of being a smartass. Still, since I started disclosing my situation, I've found that most people will slow down and go over things again with me. I use any/all of the following on a daily basis:
- I literally do not understand what you mean. Can you break it down for me?
- I don't understand what you want me to do with this information. I'd be happy to help if you can connect it to something you want out of me.
- I'm not following that example. Can you try another way of explaining it?
- I don't do well with vague terms like "advocate." What is it that you need, and what steps can I help with? (Note: You can put in any business or educational buzzword where I've got "advocate." Reform, initiate, implement, etc...)
I do. And I get away with it. Here's how: I swore off sarcasm at work. I have ditched it to the point where people assume that if it came from me, then it must be a literal request. One of the things I learned when I first started disclosing is that people see and hear what they expect to see and hear. If you never give them a reason to think that you are sarcastic, then they won't hear sarcasm even when you are forced to say something like what I've said above.
The other thing that I do is I cultivate an air of etiquette. Every email I write, I strive to format as a full letter. That means a salutation, explanation of the situation, request, and follow-up information. I follow the rule that the one asking for something (or the inferior, if the term fits) should always acknowledge receipt of a message. I make sure that I'm addressing behavior and not a person if I need to become assertive (i.e. "The assignment is late" and not "You didn't do your homework"). All of these things help to defuse any sense that I'm being difficult when I miss social cues or when I fail to understand something.
Please don't take this screed as a single, unified argument or a political motivator. It's not. It's a gut reaction to the kind of buzz that I've been hearing for the last week. The issues of passing vs. not passing, of disclosing vs. staying quiet, of visibility, voice, and disability, they are important. They are things that require meditation and not argument, because each and every one of us must choose for ourselves the right time and circumstances for our own lives. We do need more voices, though. Because if we, as autistic adults, do not start to speak up for ourselves, then the deficit model of autism becomes the only model of autism.
If that happens, then we may as well go back to the DSM-III, because we won't be teaching kids to function around people who think very differently than themselves. We will be teaching them to suppress the expression of their own traits and personalities in order to fit into other people's expectations. That's a dangerous value, whether the child in question is autistic or not. It's corrosive to emotional stability, to morality, and to their future happiness.
Right now, every autistic adult over the age of 30 was a teenager before Asperger's was recognized. We are the generation(s) that had to learn to navigate a wilderness. If there is any value to the challenges we have faced, then it is this: We can positively identify those things that did not help, and we can work to undo them. We might not be doctors, we might not be in a position to tell people what they should do, but we can surely tell them what hurts.