Sometimes, doing autism advocacy as an autistic person feels like being trapped in the same old endless repeating plot. I put in effort to do the best I can to write good blogs, network with other advocates, prepare practice and give good speeches, point people to good resources, and watch out for myself and my friends as well. And yet, more often than not, I feel that autistic people, including myself, are continuously marginalized, spoken over, tokenized, or even ignored when it comes to autism policy and advocacy.
Of course, this isn’t universal. But it’s enough of a trend that I know for a fact that I am not the only autistic person who feels left on the sideline when it comes to public discourse and advocacy surrounding autism. You would think that autistic people, the sole experts on what it’s like to actually be autistic, should be considered primary sources but instead we’re ignored or cast aside. We ask for a seat at the table, one of us is given a token position that isn’t actually taken seriously. We ask to write on the subject for large publications, and in the rare instance when our words are published it’s framed as some kind of inspiring one-of-a-kind story where people leave with their little hearts warmed instead of seriously thinking about the topics being discussed. On the rare instance when we’re asked to speak at large conferences, we’re expected to be the only ones to do so without pay or compensation. For every talented autistic advocate there seem to be ten martyr-mindset parents who would rather we didn’t exist and who are drowning out our voices. And when it comes to debate on public policy about autism and autistic people, given where this is going, guess who generally aren’t consulted?
Or, here’s another good example. It is very difficult, I reckon almost impossible, to find autism resources actually directed to autistic people. Almost every “autism resource” out there is directed to non-autistic people. Not only that, but most of them seem to be written from an angle suggesting that the author never even considered the possibility that autistic people might read it. Of course, writing resources for non-autistic people is not itself bad, but what is bad is the fact that autistic people ourselves are an afterthought. Do you know what it’s like to begin doing serious thoughtful research on this condition you know you have, only to find absolutely nothing addressed to you and half of the things you find making you out to be some kind of burden to be dealt with or an animal to be trained? Because I do. That’s what happened to me through Freshman year of high school when I started doing that kind of research. In fact, this is a big part of what inspired me to start writing about autism.
Autistic advocates have to work a lot harder to be taken seriously in autism circles than non-autistic people, and it is completely dumbfounding as to why that is. Do they think we’re not capable? Do they think we’re not smart enough? Not self aware enough? Perhaps. I can’t think of a better explanation as to why we’re so marginalized. I think it’s culturally and subconsciously ingrained to view people with disabilities (particularly people with developmental disabilities) not as serious actual people but as pity stories. Our thoughts and voices are not given the same credibility and importance as those of non-autistic people. We are seen as quite literally lesser-than. It’s no wonder, then, that autistic people are often only an afterthought in discourse about autism.
What’s even more startling is that to some people, autistics are little more than pawns in their game. Several times I have been contacted by people who want me to do something for them, such as be interviewed on their podcast, write an article for their website, or promote their book, and these people did not have the best of intent. Now, of course most of the offers I get like this actually are legitimate, so I’m not trying to call anyone out if any of you have sent me legitimate emails like this, don’t worry. However, I also know that I am generally naive and easy to manipulate, and even though I’m aware of this I am still very vulnerable, so I have to be on my guard. And in this, I have uncovered after deeper research that sometimes these people offering me an “opportunity” want little more than to use me as a means to their end goal, and goal that oftentimes conflicts with my own.
For example, I was once offered to be interviewed on an autism podcast, with the offer framed as if the person wanted to hear from adult autistics. I went and listened to a few episodes of this podcast and realized that the person had an entirely different agenda than what was stated. It seemed as if in the past they had taken an actual audio interview with an autistic adult and cut and spliced it up to fit their narrative that autistic adults would be utterly helpless if it weren’t for intensive “behavioral therapies.” The person used the podcast to promote their unethical business of trying to train autistic people into being good little “compliant” autistics. This person wasn’t interested in my perspective at all. I was just a pawn in their game, a means to an end, not a serious voice.
Another time I was asked to write an article for an “autism society of…” type organization, and one that looked rather questionable at that. I was asked to write about “the most challenging thing you face as a person with autism.” After reviewing their website and where autistic people had previously been featured, I’m about 95% sure they never intended on publishing any full article I could have written, and instead only wanted pull quotes to use on their marketing material that pushed a tragedy narrative of autism. And might I mention, I was never offered to be compensated for this, just asked to write the thing and give them permission to use my work on their website and other promotional materials. Once again, autistic people not taken seriously as an actual voice on autism, just treated as a pawn in the larger game.
So, here’s my question to the non-autistic people reading this: do you take autistic people seriously? Or do you view us as pawns? Are we token opinions or a serious voice? Are we legitimate advocates or are we pity material for marketing to bring in donations? If you think you actually are an ally to autistic people, then show it. While it’s not inherently bad to share things written about autism written by non-autistic people, these materials should never make up the majority of what you pass on. Do your best to signal boost autistic voices, treat us like the primary authority. After all, it’s only logical to do so. Compensate and pay autistic people the exact same way you would a non-autistic writer or non-autistic speaker. Don’t attend autism events in which few or no autistic people are involved in said event. Don’t support autism organizations that don’t have a large amount of input from actually autistic people, preferably a board or committee composed of mostly autistic people. Listen to autistic people with a serious mindset, not as if we are second class citizens. Presume that we are competent enough to speak for ourselves, form our own opinions, and have our own drive.
If you are autistic, especially if you’re an advocate, do not let yourself be a pawn. Refuse to speak if you are not fairly compensated. Refuse to write if you are not fairly compensated. Examine your sources. Do they care about your voice, or are they just trying to use you for their own gain? Ask yourself if you are being taken seriously, and refuse to accept a position if you feel as if you are only a token. Demand your voice be heard. Keep writing. Scream if you have to. You are important. Do not let yourself be a cog in someone else’s machine that cares nothing for your needs or desires. Do not be a pawn.