Symbols Matter, Words Matter – Autism Acceptance Month 2017

Well, it’s just about April … so I guess it’s time for my yearly rant about it. I’ve actually got a few mini rants this time around, all basically connected.

The other day, a sponsored post came across my Facebook feed. As an intentionally vague description, it used stolen artwork to associate the puzzle piece “Autism symbol” with a popular piece of pop culture, for commercial gain – not even linked to ANY non-profit. It was gross and appropriative on many levels… and then I read the comments.

… Where to even start with this?

First of all, props to all of the Autistic people in the thread who tried to speak up against it, while being wholly drowned out by non-Autistic people. It can be hard to speak up for ourselves, in the face of being outnumbered by many. I will never understand why some NT people have such a need to shout down Autistic people speaking up on Autistic issues.

A few issues to discuss here, as a result:

1. If you are not Autistic, you do not get to police how Autistic people address themselves.

This is a HUGE issue when it comes to identity-first vs person-first language. Autistic people tend to prefer identity first language – “I am Autistic”, “They are Autistic”, etc – VS person-first language – “She has Autism”, “He is a person with Autism”, etc.

Identity-first language acknowledges that this is who we ARE. We’re not inflicted with some disease, that we don’t need a “cure”, etc. Person-first language distances the autism from the person, and is associated with the view that it’s a disease. You have a cold, you have cancer, you don’t “have” autism. Autism is our Operating System, it’s tied up in to our personalities, our senses, the way we think, the way we experience life. It’s not some *thing* you can just take away.

I get so tired of seeing neurotypical people “correcting” Autistics on their choice of language. “You’re not ‘autistic’, you’re a person with autism!” is never an acceptable thing to say to anyone, period. That goes double when THAT is the response to an Autistic person explaining why something that NT people are doing is problematic.

Hell, even if you are Autistic, you don’t get to police the language that Autistic people use for refer to themselves. Some – not many, but some – Autistic people prefer person-first language. Many don’t. Let people address themselves the way they see fit, and have some respect for their choices.

2. If you are not Autistic, you are not Autistic.

This is an issue both on a smaller, individual level, and on a societal level. So often, we will see NT people in Autistic spaces, speaking over Autistic people, because they are related to an Autistic person. Relation does not equal authority, and it most certainly does not grant some sort of divine permission to speak OVER Autistic people.

On a societal level, this is a problem when it comes to issues of representation. So often, parents of Autistic people are looked to as “consultants” in matters of Autism (note: matters of Autism, specifically. NOT matters of being a parent to an Autistic child).

Under no circumstances is a neurotypical parent of an Autistic child an expert on what it is to be Autistic, nor should they be the sole voice when it comes to things like consulting for the creation of an Autistic character in the media. With so many actual Autistic people out there who are more than willing to consult on such things, there is really no reason for an NT parent to be consulted at all. There are, after all, Autistic parents of Autistic children out there!

Right now, this is the issue we’re seeing with Sesame Street’s new Autistic character. While they apparently did consult with Autistic people, they also consulted with Autism Speaks and NT parents “for balance”. This is probably a big part of the reason that all of their marketing uses person-first language, much to the disgust of basically every Autistic person who has said anything about the whole thing.

When you are specifically talking about women’s lives, you do NOT need to consult men “for balance”. When you are talking about black lives, specifically, you do not – AND SHOULD NOT – need to consult white people about it, “for balance”.

When you reach outside the actual community for such input, you are taking agency away from those actually impacted by the portrayal being discussed. There are far too many Autistics that are willing and able to educate and/or fight for proper representation, to keep them silenced in favour of NT people.

Autism Speaks – an organization almost universally despised by those it purports to represent – tends not to have any Autistics actually involved with the organization… go figure.

Autistic Self Advocacy Network, on the other hand, is vocal about “Nothing about us, without us”.

3. Let’s talk about the puzzle piece. Again.

This is a subject I’ve ranted about before, but let me try to condense this down into a shorter form.

The puzzle piece was around before Autism Speaks, though it is HIGHLY associated with them. The idea that we are a puzzle to be solved is dehumanizing and offensive to a lot of us.

The accompanying “Until every piece fits” may sound pleasant enough to the average neurotypical person, but you have to remember – your experience is not ours. You may hear that and think “yes! Autistic people should fit in!”. We hear it, and our thoughts are usually elsewhere. A few examples:

– ABA “therapy” (Which has left many Autistics with PTSD), other compliance therapy (Which could/should be considered torture, in many cases) and many other ways that many Autistics are forced to “fit”.

– The knowledge that the organization most associated with that phrase/image is also one who is big on researching in-utero markers for Autism. Yes, they want to employ eugenics against us. Much like words matter, context matters. Knowing what history knows, that phrase would sound an awful lot less warm and fuzzy if you heard Hitler saying it, wouldn’t it?

– There’s the issue that the puzzle piece – usually done up in primary colours – is infantilizing. These days, people are more likely to be diagnosed in childhood, but it’s not a childhood thing. There’s a lot of erasure of adult Autistics in the community. When it comes to “awareness”, support, etc, many Autistics feel that we are forgotten once we age out of childhood. When it comes to any online discussion involving Autistics, adult Autistics are frequently discounted or ignored entirely. We don’t become Neurotypical once we hit age 18, you know! To have such a “childish” symbol associated with us is a reminder of that whole issue.

– The very fact that we shouldn’t NEED to fit. Society benefits from the Autistic mind in so many ways – where do you think we would be right now, technologically speaking, without Autistics? You would not even be on the internet right now – it would not exist – and able to read this rant, if not for the many, many people on the spectrum who made the internet happen. It’s not logical to benefit from our brain differences, while simultaneously carrying on about how we should be just like you. Diversity is important, on so many levels. Even beyond just representation… but I’ll spare you the tangent about evolutionary biology. For now 🙂

I’ve said it before, I’ll say it again. We are UNIX minds in a Windows world… and the analogy works on many levels.

ANYWAY.

While the puzzle piece and phrase may sound positive to well-intentioned NT people, they can have MUCH darker connotations to those of us on the spectrum.

All of this, and I still see NT people shouting down Autistic people who try to explain how problematic the symbol is. We shouldn’t have to look past the dark, creepy overtones to the symbol and phrase, just because they make neurotypical people feel good. That’s not how this works.

Awareness vs Acceptance

It’s 2017. We’ve been around for a very long time, and we’ve even been known for a long time. It’s time to move on from “awareness” in April.

I’ve noticed a very clear divide in the hashtags used by Autistic people, and by non-Autistic people in April. We tend to use #AutismAcceptance”, while those not on the spectrum tend to use #AutismAwareness. Words do matter, whether it’s this set of two options, or the earlier discussed identifying language.

This April, please reconsider your words. Please reconsider the use of the puzzle piece. Please consider NOT “Lighting it up Blue” – an Autism Speaks initiative – and consider one of the alternatives, being promoted by actual Autistic people to combat the “Light it up Blue”.

A few hashtags to follow on Twitter, or to use to search for further reading:

#ToneItDownTaupe
#REDInstead
#DontLIUB
#BoycottAutismSpeaks

Just now, I see there’s a new movement.. To use #AutismAppreciation. I like it!

Now, if you’ll pardon me, I think it’s about time for my yearly viewing of X-Men: The Last Stand.

Marie

PS Here are some of my previous posts on Autism.

Explaining Autism: Interoception, and Something Other Than Pain

Autism Awareness Day – A Few Thoughts from My Spot on the Spectrum

Autism Speaks Does Not Speak for Me

Interacting with Autistic Children: A Guide for Charity Appearances

Aspergers: You Can’t Cure “Awesome”

Author:Marie Porter

Marie is an award winning cake artist based in Minnesota's Twin Cities. Known as much for her delicious and diverse flavor menu as for her sugar artistry, Marie's work has graced magazines and blogs around the world. Having baked and designed for brides, celebrities, and even Klingons, Marie was proud to share her wealth of baking knowledge in her two cookbooks: "The Spirited Baker" and “Evil Cake Overlord”. Marie has also authored a book about her experiences surrounding the 2011 Minneapolis tornado: "Twisted: A Minneapolis Tornado Memoir"

One Response to “Symbols Matter, Words Matter – Autism Acceptance Month 2017”

  1. August 27, 2017 at 12:00 am #

    Wow, Marie! In the last couple of days I’ve read most of your blog posts on autism, and several of the articles in the links you provided, and it has been enlightening, to say the least. Thank you so much for writing such great pieces. As an NT, my only association with autism–as far as I know–is my sister-in-law who is a pediatrician specializing in autism. She’s been head of the autism department at Johns Hopkins All Children’s Hospital in St Petersburg, FL for 26 years, and she and my brother just moved to Rochester, MN where she started her new postion this week heading up the Mayo Clinic’s autism department.
    I emailed your “Let’s talk about the puzzle piece” post on to her and asked for her thoughts.
    Great writing and well presented position.
    Thanks, again!
    MaryJo
    MaryJo Boyle recently posted..Wholegrain Cocktail Rye Bread

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