If You Want to Support Autistic People, Please Start By Listening to Autistic People

We need to talk, guys. This pandemic has made me re-evaluate almost everything- and there’s something I need to let you in on that I can’t be silent about anymore. It’s big and I’m not done learning about it but I also can’t wait until I feel like I’m “done” learning to start talking about it. Because April is basically here and when you start posting “autism awareness” puzzle pieces, I’m gonna have a fit.

Before I even start talking about “it,” I need to state how important it is to not just include, but hold paramount, the perspectives of people you are making policies about, making treatment plans for, and/or making awareness campaigns for. Also – when people of whatever community/affiliation/culture/identity/etc ask that you refer to them a certain way, you must listen to them. Why wouldn’t you? If you claim to want to support/help a group of people, I would think you’d care about what they have to say and honor their preferences when it comes to what to call them.

So, when you want to participate in April’s “Autism Awareness Month,” I implore you to please seek out and listen to the perspectives of autistic people first. I say “autistic people” because, from the many accounts I have read/encountered, the majority of autistic people prefer “identity-first language.” If you’re someone who works with autistic people, you may have been taught to use “person first” language and say “person with autism” or “person on the spectrum.” This “person first” language comes from the 80’s campaigns to destigmatize people suffering from AIDS- to separate them from their diagnosis. Other examples of “person-first” language- person with diabetes, person with cancer, person with arthritis. Because it would be jarring to be referred to as a “diabetic person,” a “cancerous person” or an “arthritic person.” Diabetes, cancer and arthritis are diseases people suffer from.** Person-first language implies a condition for which a cure is needed/desired.  Autistic people see autism as part of their identity. Autism is not something to be cured. You wouldn’t refer to a gay person as a “person with homosexuality” unless you think there’s something wrong with homosexuality (which you don’t right? Don’t be an ignorant ass, please. If you’ve gotten this far, you must be part of the choir to which I’m preaching, yes?).   

April has been “Autism Awareness Month” since the 1970’s. You will recognize the puzzle piece symbol and also possibly remember the “Light it Up Blue” thing where they put blue lights on buildings at night to “increase awareness.” The Autism Society claims the puzzle-piece ribbon as their trademark and the creation of Autism Awareness Month. The autistic community has MANY things to say about April. The first of which is that it, at the very least, needs to be renamed “Autism ACCEPTANCE Month.” The push for this on social media has been so strong that the actual Autism Society that came up with the whole idea has released a statement that they’re renaming the month. They’re asking you to take the note. “Awareness,” like person-first language, implies a problem-to-be-solved- a disease-to-be-cured, an undesirable/unacceptable condition. “Acceptance” implies something you make accommodations for. “Acceptance” implies we see our fellow humans’ differences as just that- differences, not symptoms to be eliminated. “Acceptance” also means we see differences we can celebrate and value as a community.

I have a lot more to say about this and I’m planning on writing more- but I wanted to get at least this part out there before April hits. Please, please, please, if you do nothing else for Autism Acceptance Month, search any of the socials for the hashtag #actuallyautistic and wait for your mind to be blown wide open. This is a marginalized community of people that is on the verge of what I think will be a gigantic revolution. If you have more time and want to educate yourself about this perspective, check out these websites:

Autistic Self-Advocacy Network: https://autisticadvocacy.org/

Neuroclastic: The Autism Spectrum According To Autistic People: https://neuroclastic.com/

Thinking Person’s Guide to Autism: http://www.thinkingautismguide.com/

**EDIT: It has been brought to my attention that diabetes is not a condition that has a cure- and there is an emotional toll that comes with the general society thinking it’s a condition which was brought on by one’s behavior and something that can be eradicated. The question of whether to use person-first or identity/condition/diagnosis-first language when referring to diabetic people / people with diabetes is a subject of debate among those that have it. As a universal rule, you should use whatever language a person prefers to refer to themselves no matter what. This post is about the message I’ve received from the online autistic community to use identity-first language as a default and only switch if the person in question asks you to do so.