Sometimes I feel like a double agent.
I am Autistic. I’m not ashamed. I think I’m pretty obvious – at least to my own people. Autistics can pretty much peg me as part of the neurotribe pretty easily. But it seems many others can’t.
Like several (though not all) Autistic females, I guess I “pass” pretty well. At least that is what I have been told anyway. Not that I’m trying to pass per se; I’m pretty “out.” But a lot of my “obvious” Autistic characteristics are more internal, and some of the ones that are not internal are traits that are also seen in other groups, such as gifted adults (of which I am one) and introverts (of which I am one also, though it is not always apparent). So they may not necessarily be perceived as being associated with autism as opposed to something else. It’s hard to explain. I feel that the way I advocate, research, and go about doing things is very much Autistic, but it is not seen as such, I suppose.
But there are indeed times that I can tell that I am coming off in a way that is more neurotypical. In other words, there are times that I DO perceive that the way that I am being read is as a non-Autistic person. Basically, in those instances I can “feel” that I am “passing,” even though that was not my intention for whatever situation. It’s weird. I don’t necessarily plan to act or speak any differently away from home, but it kind of happens instinctively. Maybe it’s a learned survival mechanism; maybe it’s just what feels safe. Just like people put on their business attire in order to go to work, I can turn on the neurotypicality as needed. It’s not perfect, but it works.
I guess if I think back and ponder the larger issue of how one might learning skills that might make one speak and act in a manner that would result in seeming to “pass,” I suppose I had good role models; my parents are immigrants. They moved from Africa to America many years ago and learned how to balance navigating life in a foreign place…they learned the language, the customs, the etiquette, the nuances, etc. They are proud of who they are and never hid it, and raised my siblings and I to be aware and proud of ourselves and our cultural and racial heritage too. In order to survive in this society they learned how operate according to its rules, but they never abandoned their own language, customs, beliefs, etc. Their true way of communicating, living, thinking, etc never disappeared even as they learned to incorporate the new ways. They simply learned how to “code switch” between the two.
So did I. I somehow learned how to codeswitch between my natural Autistic way of being and the neurotypical way. I can do it – apparently well, though it’s tiring.
Consequently, I think I am a lot more noticeably “Autistic” in my home than I am in other places. Not because I’m hiding who I am when in public, because I don’t necessarily suppress my natural way of moving, talking, or speaking. Maybe because home is my haven and I feel more free to just…be. The desire to flap, spin, engage in scripts, echolalia or perseverative speech, or whatever is much stronger when I am in my comfort zone with my family than when I am out in the world. (Similarly, my desire to have bare feet is stronger at home than in public – to let my toes “breathe” and not feel confined inside shoes. I guess home just evokes a sense of being truly free.)
Back to feeling like a “double agent.” Since I am not immediately pegged as being Autistic, I am afforded the ability to speak about autism in circles where self-advocates aren’t always able to do so. I don’t hide who I am, but to many my role(s) as a parent of Autistic children and/or an individual with a graduate degree in autism and as someone with pre-doctoral fellowship training in autism are more evident (and seemingly perceived to be of more value) than my own identity as an Autistic woman. It seems, sadly, rather than having interest in my neurology, people are more drawn to those other things. The piece of paper and letters after my name. The research I’ve done on autism. The “big name” professionals I’ve worked with. Or the fact that Autistic children came out of my vagina (or, more accurately, out of my uterus).
All of that apparently carries more weight and is of more value than living over three decades in my own Autistic skin.
I don’t understand it. I don’t. But if it gets me in the door, then I don’t have to understand it I guess. If it gets me a seat at the table and a platform to share my people’s views then maybe my ability to “pass” is useful. Because I’m no token; this stuff is important to me. So once I’m allowed “on the inside” I don’t waste much time before I begin to share important concepts that are central to the Autistic community (as well as principles that are important to other marginalized groups, including people with other disabilities, people of color, women, queer/non-heterosexual individuals, etc when I can).
The way that I might introduce these principles might vary depending upon the audience and their ability to comprehend what I am sharing. Some people are more receptive when a gradual approach is employed; others prefer being given a lot of information that they can think through and ponder. It might mean that I have to wade through a lot of “muck” to make my point and it might mean that I have to give people some latitude to make mistakes and even unintentionally offend me (“choosing my battles”) while they figure things out. Such is life as a double agent…
If I think about the whole thing too long, though, have to admit it bothers me that if I was understood to be “just” an Autistic adult I would likely be relegated to the outside and not taken seriously. That’s not cool. I, and others, should be respected and sought after for our perspective and lived expertise as persons on the autism spectrum. But more often than not that doesn’t seem to be the case. Instead of “Nothing About Us Without Us” it seems more like “Nothing About Us With Us.”
But all marginalized communities throughout time have needed different types of people to get the job done. Abolitionists were slave and non-slave, black and white. Suffragists, desegregation activists, disability rights pioneers, gender and racial equality advocates…all of these groups are composed of “affected” stakeholders from within the community as well as others who align with them who might not be personally affected in the same manner but still care.
And it also includes people who can “pass” but choose to use their passing privilege not for their own gain but for a larger purpose, the collective benefit. Rather than disappearing into the “majority” group and blending in, they opt instead to serve as a bridge between the group they look like and the group they are actually a part of. To improve understanding, communication, interaction, and relations between the groups. To help increase acceptance of the marginalized group. To use their role to make things better.
So while it might be annoying to constantly hear things like, “You?!?! YOU’RE Autistic? Are you sure? I NEVER would have known; you seem so ‘normal.’ You must be ‘really high functioning’ or really mild on the spectrum,” I can endure it if it means that the way that I present affords me the opportunity to use my voice for the greater good and to help make things better for my people.