By Michael Scott Monje Jr.
We aren’t necessarily trained educators (although some of us are), but we have an advantage over people who are: we understand what it’s like to be on the receiving end of accommodations and special education. Here’s what listening to our experiences can do for you as a teacher:
3. You’ll be forced to confront your assumptions about your students
It’s easy to look at someone like me and to mentally apply a label. Asperger’s, you might think. High-functioning. Verbal.
The problem with this kind of mental labeling is that it only really speaks to your perception of me now, as an adult who is closing in on middle age. You don’t know what I was like when I was five or ten or fifteen. You don’t know whether I could vocalize during my elementary school years or not. You apply those labels based on what you see of me now, not based on my history. This kind of shortcut in thinking is understandable and human, but it is also an error. It assumes that people are static and that certain kinds of impairment are insurmountable.
Given your profession and your position within that profession, that’s not a mistake you can afford to make.
If you listen and you hear about the varieties of our experience, you’ll start to really appreciate this in a new way. Not only will you learn that there are many of us who had speech delays well into adulthood, you’ll start to hear about the delays and problems we still have.
For example, I still have times when I find it impossible to speak. All of my developmental milestones for speech were “on time” when I was a kid, but under certain circumstances, I just can’t talk. The truly unfortunate thing is, losing my voice is more common when I’m being asked to do something that I don’t truly consent to or when I feel like my rights are being stepped on. This means that it’s incredibly difficult for me to actually say what I want or need during the times that it is most important that I be able to.
This access issue goes away if I’m allowed to simply type instead of talking, but most people do not believe that there is such a huge gap between what I’m capable of saying and what I’m capable of writing, because they see my ability to adhere to certain social roles and pre-defined interactions (such as etiquette-based exchanges) and they assume that the things I’ve been taught to say reflect the things that are actually going through my mind. The very real schism between what I am capable of navigating and what I am capable of fully participating in has been the defining feature of my adult life, and it is very much caused by the same kind of shortcut in thinking that leads to autism parents and educators quietly applying function labels when they see that I can talk.
I’m not really a special case, either. There are several other bloggers out there who discuss (much more often than I do) the varieties of ways that they communicate under stressful or uncertain circumstances.
We are like the children you work with. We are like all of them, just not all at once. My ability to put on a social performance that is comfortable for you doesn’t change that. Instead of looking at our more-or-less normative performances as adults and seeing that we have “overcome” or that we are “higher functioning” than you expected, consider the idea that we are capable of translating. It’s hard, and we’re not infallible—all communication involves inference and inductive reasoning, and we can make mistakes—but we have an advantage. We share a frame of reference with your students that most of you don’t share.
The fact is that a lot of child development theory is based on conjecture and observed behavior under very limited circumstances. When children are developing outside of the projections of theory, then theory really just starts to be about one of two things: Either it becomes a mess of guessing and hoping that you’ve guessed right, or it becomes a blueprint for shaping a certain kind of behavior instead of being a blueprint for understanding the actual experiences that people have.
Both of those choices are awful when there is a third option available: Gathering more information from people who have experienced an alternative developmental path and creating new theory.
2. You’ll be put in touch with cultural resources that you might not otherwise be able to access
One of the first questions I’m asked whenever I meet a new parent in the community or a new educator looking for resources is whether or not I’m the only one doing this kind of work right now. It just amazes me. Not because I don’t understand the feeling, but because I still do, even now.
I’ve been presenting my writing publicly for about 3 years, and when I started, I thought that all the blogs except mine were written by parents. It only took a couple of months for me to realize how wrong I was. Not only is there a community that is both wide and deep, there is a multi-generational written legacy. It’s mostly preserved online and spread through word of mouth, but there have been discussion groups, both public and private, for about as long as there has been an internet. The documents produced by those communities and published in a mixture of print and ebook anthologies, blogs, journals, and even grassroots ‘zines represent years of documented lived experience, complete with critical commentary.
The thing is, if you’re not talking to us, you’re not likely to find a lot of the important work that’s been done. This means that your ideas about what your students might expect as they grow up and enter our community are not likely to be very accurate.
It’s not that any of this information has been kept secret, either. It’s just that spreading the word is difficult when you have medical professionals, teachers, legislators, and even some parents of autistic kids pushing back against you with their ill-informed (but not always malicious) preconceptions about what you’re capable of or how challenging your school years were.
The fact is that there are a lot of us talking about our personal growth and development, documenting when we talked, when we wrote, what we wrote about… We’re not just philosophers telling you what we wish you to believe about ourselves—we’re also a grassroots-organized coalition of observers who are writing themselves up as case studies and sharing the results with one another. We’re taking notes about how many other people we see in our community share which traits, and we can do this because we’re all sharing our experiences with each other and listening to one another.
The conversation’s still in its early stages, but there’s even work being done on the ways that autism might impact our perceptions of ourselves in terms of gender presentation and sexual orientation. In addition to that, there are Autistic people representing a diverse array of ethnic, racial, regional, and traditional cultures writing about their experiences, including the difficulty they encounter when attempting to access basic educational resources. Often, they offer an intersectional and critical point-of-view that is informed by many of the same writers you read during your formal education and training.
We have conferences and we network, too. If you’re not seeing our promotional materials yet, then maybe it’s time to ask yourself what communities you are participating in, and what those communities can do to improve their representation of our voices.
1. You’ll learn why calling us “self-advocates” isn’t quite right
It’s not that the term is offensive. It’s not even that it’s necessarily inaccurate—I am a self-advocate when I need to be. It’s just that “self-advocate” doesn’t really describe what I’m doing most of the time. Look back over this article. My advocacy here isn’t for myself. I don’t benefit from changes to the K-12 curriculum, I’m over thirty.
It’s totally appropriate to call me a “self-advocate” when I am engaged with either public policy debates or interactions with the medical community because those are times that I’m actually advocating for myself and trying to gain access to resources and supports. Similarly, it’s totally appropriate for you to want your students to grow into self-advocacy. I’m absolutely not arguing against the term or the goal.
The issue comes in when you refer to people who are taking time away from their personal and professional lives in order to educate you or help your students as “self-advocates”. In that context, it becomes an erasure of our contributions to the ongoing conversation, because it labels our attempts to act as role models, as teachers, and as community members as self-centered acts. Maybe not selfish acts, but self-centered acts.
The fact is, though, that our attempts to reach out and to do these things are not self-centered acts. They are acts of absolute selflessness. For many of us, re-engaging with the K-12 school system and/or its representatives is stressful. When we do it, it is out of empathy for students that remind us a lot of ourselves, and it is for their benefit. Not ours. Not yours.
We don’t reach out to people in your profession to advocate for ourselves, and we don’t do it to tell you how to do your jobs. We do it because we did not have role models that reminded us of ourselves when we grew up, and we don’t want today’s generation of Autistic kids to grow up without them.
So don’t call us “self-advocates”. At least, not when we’re trying to advocate for something larger than ourselves. Go ahead and call us activists, because we’re working to build a society that is different from the one we were born into. Call us mentors, because we don’t just want to help you to communicate better—we also want to help your students learn to be adults in our community.
Or you can call us teachers, because a lot of us are. More than you might realize.
Photo Credit: Chris Sloan