— AutismWomen’sNetwork (@Autism_Women) March 29, 2016
April is a challenging month for a lot of autistic people. The reason, as mentioned in another recent Mary Sue article, is Autism Speaks (or Autism $peaks/A$, as it’s often referred to in the community). Their #lightitupblue event takes place April 2nd, intended, among other things, to point out that there are “more boys than girls” with autism despite building evidence that’s based on doctor bias and differing display of traits. Sarah Akin posted an infographic on Twitter that sums it up perfectly: “Did Autism Speaks give you hope? Or did they steal your hope and sell it back to you?”
There’s ample information on why they’re such a problem, and there’s a formal boycott taking place, yet they still rule the conversation. So this is me, an autistic adult, creating a conversation of my own. I’d like to share how to support autistic people this April; the info can certainly be hard to find when the first link to our perspective is buried at the bottom of Google search.
The first, and most time sensitive, is to participate in our boycotts of Speaks. Let the world know that you support oppressed groups being the main voices on themselves in #REDinstead in April, especially the 2nd, and wear red to show support and spark conversation. Boycottautismspeaks has a list of retailers donating to them, as well. You can also check out our other hashtag, #AreYouAwareOfMeNow, to keep up on the dialogue. The best defense we have against ableism is education and conversation. Learn about autism from autistics with sources like Neurowonderful, The Thinking Person’s Guide to Autism, and our organizations, such as Autism Women’s Network and the Autistic Self Advocacy Network. Your area may even have a local chapter!
Be aware that many autistic people may be uncomfortable with person-first language (such as “person with autism”) rather than identity-first language (“autistic person.”) This is because autism affects who we are and how we see the world, and we would not be the same person without it. It’d be comparable to, for example, calling me a “person with gayness.” Yikes, right? That said, every person is different, and you should always use what makes that individual comfortable when speaking with someone. The same goes for how comfortable we are with being called Asperger’s vs. autistic.
Be aware that many autistic people may be uncomfortable with functioning labels, or “high functioning” and “low functioning.” The short reason is that it is often used to deny those deemed high-functioning from necessary services and accommodations and used to strip those deemed low-functioning of their rights. Additionally, it paints an inaccurate picture: one individual’s “functioning” varies greatly within years and even throughout the day, and it depends on the task. I, for example, am consistently verbal, but I cannot leave the house regularly without meltdowns this year, and not at all on my own. Again, opinion on these terms varies by person.
Autistic people may also also be uncomfortable with use of the puzzle piece, which has become highly associated with autism speaks and the idea that some part of us is missing, and people using terms like “Autism Mom/Family/etc.” which is known to be used by parents who bemoan their lives on social media and share their children’s meltdowns for pity. It’s also using something about us as a part of them. Again, like my straight mom calling herself a Gay Mom.
Know that there are reasons people can’t get or don’t want a professional diagnosis, and that self-diagnosis is more than a quick trip to WebMD. Everything covered in psych school, the tests used by professionals and many, many more resources, including those by the actual autistic experts, can be found online. It can be expensive and sometimes impossible to get a diagnosis in adulthood, and doctors misdiagnose based on things like race, gender, and misunderstandings of what autism is. Think of it, and it’s probably been said to someone trying to get a diagnosis. “You can’t be autistic because you just made a joke/wear makeup/can talk/are a girl?” Yep. Additionally, a formal diagnosis can bar people from opportunities and cause them to face more discrimination. Your friends all talking about moving to Canada if the wrong candidate wins the election? Yeah, diagnosed disabled people often can’t do that, because it’s classified as an excessive drain on resources. Please don’t try to put us in charge of proving anything—besides being a constant pressure, the commands for proof of being really autistic or disabled hurts the community much more than it helps.
Also, please keep in mind that most of us do not want a cure. Yes, the idea of curing us, to use my example again, disturbs me just as wholeheartedly as that of curing me into being straight.
Here’s an easy one: Relax and participate in our interests with us! It’s stressful being told the world would be better off without you everywhere you go for a month. Let your autistic friends relax—don’t judge them for acting “weird,” because the pressure to act normal can cause burnout, and it’s boring anyway. Try not to ask us too much why we do what we do, unless it’s through something like this, because sometimes, it’s just how we are, and trying to figure out why can use up a lot of energy. Just binge watch shows with us and ask us about our main interests instead (if you’ve got nowhere to be for a while)!
Lots of information about autism by autistics is out there. The problem is that it’s been buried, unnoticed, or intentionally spoken over. The best thing you can do as an ally is educate yourself and share this information with others. That parent with an autistic child you know who talks about their Autism Speaks walks probably really, really wants this information; they just don’t know it yet. The discussion your psych class is having based on a textbook blurb and someone who has a cousin needs to be corrected. We’re right here, speaking. We just need to be allowed into the conversation.
Nova Mona is an artist, writer, and proud Autistic who’s always up for talking representation in media. They are available for articles and anthology pieces firstname.lastname@example.org.
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