Let’s Talk about the Autism “Puzzle Piece”

As April starts tomorrow, I’ve been spending a fair amount of time fighting the good fight on social media – Educating people about the evils of Autism Speaks, speaking up for autistic rights, and thanking allies for spreading good information.

One question I’ve been asked a lot lately is “Why is the puzzle piece considered offensive to Autistic people?”.

While I can’t speak for all autistic people, obviously, I’d like to take a few minutes to give my own personal view on the nature of the offense.

A popular saying to accompany that symbol is “until all the pieces fit”. Admittedly, this sounds nice enough on the surface… but to those of us who have spent our lives on the spectrum, it’s actually a really gross and horrifying sentiment.

First of all, there’s the idea that we *have* to fit. That we’re not *allowed* to be different. As I’d mentioned in an earlier entry, I’ve read that autistic people who hide their autistic traits “often have high degrees of anxiety or other mental health problems”, from the constant acting. I believe it. The stress to “fit”, to not be singled out as different, and – in many cases – to conceal your spectrum status from employers/potential employers is a huge issue.

I spent most of my life trying to fit in, to pass as neurotypical, and to ignore my diagnosis. I didn’t “come out” until I was well into my 20s, around a decade after having an official diagnosis. It was exhausting… and I was never truly happy until I accepted myself, and just let it be. I am who I am.

Do you know what happens when you try to force a puzzle piece into a space where it doesn’t belong? It warps, folds, and can break. Assuming you can actually force it into the space you’re trying to, physically… it still doesn’t “fit”. There is no reason in the world to force a puzzle piece into the wrong space.

Not only does it not ADD anything to the puzzle it’s being forced into, it takes away from the piece itself. Forcing it into a wrong space deprives that puzzle piece of completing the puzzle it was meant to.

Anyway, enough metaphors. Let’s talk real facts – the ways that autistic people are forced to fit in.

There’s the more benign things – being shamed and otherwise discouraged from saying and doing what comes naturally to us. Flapping, toe walking, whatever. For me, it was chewing collars and disassembling pens / binders. Was it harmful to shame me out of habit? Probably not, in the long run… but it definitely contributes to this narrative of us being “lesser than”. Sometimes it seemed like those who would address my quirks felt like they were trying to train a monkey to be human. It’s gross to be on the receiving end of that.

As I was diagnosed early on in Aspergers even being a thing – and because I’m seen as “high functioning” (I hate those labels, btw. Super disrespectful to many autistics), I got to avoid most of the problematic “therapies” out there. The only thing I can really remember having to do, was getting taken out of class on a regular basis during elementary school, to go sit in the art room with an adult .. Councillor? “Big Brother/Sister” type thing? I don’t even know what their actual title was. We’d sit and talk and mess around with craft materials. Not particularly damaging, and I looked forward to getting away from my classmates.

I didn’t get subjected to ABA – Applied Behavioural Analysis.

ABA is something that Autism “Warrior” Moms and organizations like Autism Speaks LOVE to support, promote, and push on others. If you read ABA as it’s marketed, it sounds pretty harmless, and potentially even helpful.

… however, if you read about it from those who have gone through it – many of whom suffer from PTSD as a result – you’ll see a very different picture being painted.

25+ hours of intensive “therapy” involving forced coercion every week. Kids being denied meals until they “comply” with whatever it is that’s being forced on them at the time. Subjugation. “Treatments” that – if applied to non-autistics – would be considered child abuse.

As I haven’t gone through it myself, I don’t feel it’s my place to go into too many details – but I really suggest reading the stories of those who have gone through it. A few examples:

ABA and Autism: The Thorny Problem of Control and Consent

Touch Nose. Gummi Bear (First in a series on that blog)

Quiet Hands

My Thoughts on ABA

Judge Rotenberg Center

ABA

.. And when you read that, and see how people – HUMANS – get literally forced into “fitting in”… hopefully you can see why that puzzle piece is so offensive. I see it, and I feel for all of my autistic brothers and sisters who have been subjugated and even tortured in the name of “fitting that last puzzle piece in”.

… and that’s just the most popular “therapy”. There are all kinds of more “under the table” ‘therapies’… including administering bleach, both orally and by enema. Again, the kind of thing that would be seen as child abuse, IF autistic children were seen as full humans.

That’s why so many of us feel that the “Autism Awareness” thing needs to go away, and that society should adopt Autism ACCEPTANCE as the focus. We don’t need awareness, especially the kind of “awareness” organizations like Autism Speaks puts out there. We need acceptance. We don’t need or WANT a “cure”, we want to be seen as equals, and treated as humans.

So please, this April… Don’t “Light it up Blue”. Don’t join in on the giant, crowd sourced advertising Autism Speaks ad campaign that is “Autism Awareness”.

Instead, please join those of us on the spectrum in fighting for Acceptance.

My personal favourite is “Tone it Down Taupe”. It’s a tongue in cheek campaign, but I love it.

Additionally, “Walk in Red” and “Light it Gold” are other social media campaigns for autism acceptance, organized by #ActuallyAutistic people.

So far as I can tell, neither of these market for any particular organization, and are purely grassroots efforts to fight for our equality.

If you ARE looking to donate to an organization, I recommend Autistic Self Advocacy Network. It’s by Autistics, for Autistics, and does *not* promote the “cure” narrative.

Whew, that turned out to be quite the long entry! Thank you for listening!

It’s my hope that more neurotypical / “allistic” people take posts like this to heart, especially when you come upon Autism Speaks / Light it up Blue / puzzle piece items online. Those of us on the spectrum are in the minority, and can always use help from allies. If you see something, say something

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"

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