So, this is refreshing!
It’s not everyday we #ActuallyAutistic folx get some good news, especially from within the realm of research. But it’s a new year, and it appears that — somewhere, somehow — people have been listening. And what’s more, they’re willing to act.
But lo and behold, this is exactly what’s happened. Just got the news yesterday from the journal Autism:
… autism research is a shared endeavour. Precisely because it is a common endeavour, autism research requires the participation of that broad community on fair terms. It is not right that one group holds all of the influence and power. If any group, or collection of groups is unattended or their opinions discounted, then they are being treated unfairly and in a way that does damage to autism research itself. The core ethos of this journal must include ensuring that everyone who participates in autism research has their views taken into account.
This takes us, of course, to the symbol that used to occupy the cover of this journal – the puzzle piece. Others have written at length about the history of that symbol, how it was initially deployed by the UK’s National Autistic Society (NAS) in 1963, and how it has become increasingly controversial as the years have progressed (Grinker and Mandell, 2015; see also Gernsbacher et al., 2017). But what has become much clearer recently is that autistic selfadvocates and many who support them have not only felt that the puzzle piece does not capture their view of autism itself, but that the failure of organisations such as this journal to act in response constitutes a core disrespect, as if their voices and opinions did not matter equally to other people’s (Brook, 2016).
Oh, my… I’m feeling a little choked up, actually. The fact that people in positions of influence have actually been listening… and have taken substantive, public action… that’s huge.
What’s more, the new design makes total sense. They say they developed the design with input from Autistic people, which in itself is amazing. And the red circles — overlapping, yet separate, similar yet slightly different… that pretty much says it all to me.
Plus, no blue. #Redinstead. Always a nice change.
So, I’m feeling like I can breathe a little easier. Not until I saw the new design, did I realize just how I hold my breath and brace for a conceptual … infringement… whenever I encounter official outlets for Autism research and thinking. Even with publishers and organizations who are very much “on our side”, I brace myself, every time I read their tweets or publications. I’m always on the defensive with the official outlets, no matter how well-intentioned they are. Because they so often just don’t get it… and I have to go to considerable lengths to rectify everything in my mind and convince myself — yet again — that they are not the enemy, they just don’t get it 100%… yet… and they’re trying.
Of course, the bulk of the conceptual work is on my shoulders, because I’m in the minority and on the receiving end. I don’t have the time and leisure and money and stature to do much of anything about it. Me taking the giants of the Autism industry to task about their unwitting slights and oversights, is like piloting a jet-ski through an iceberg field, trying to avoid the chunks of floating ice out of the way so I don’t wreck on them… as well as trying to nudge them out of the way, so others less speedy and attentive than I don’t run into them and wreck themselves.
The peril of poor word choices and dismissive language, I feel, is so much more severe for Autistic individuals, because we can experience language so viscerally, so physically, so deeply. Handing over Autism vocabulary to non-autistics, is a little like handing a gangly teenager a razor-sharp katana. They just don’t have the coordination and maturity to handle it well. And somebody’s gonna get hurt. Of course, the person wielding the weapon(s) isn’t going to suffer. They won’t feel a thing, when they draw blood from others.
And that’s precisely the problem. Because, well… double-empathy. Yet again.
For a less gruesome comparison, how ’bout this — asking non-autistics to research and address Autism on their own, is like asking a color-blind person to pick out a coordinated outfit out of your wardrobe of colorful prints for your big job interview. Nothing against the color-blind person. They’re still valuable and valid as a human being. But you’re better off having someone who can detect a lot more colors in the spectrum, if you’re going to present your best for The Big Job.
Fortunately, it looks like things are shifting. Changing. With any luck, improving. Big thanks goes to the researchers who have been raising the alert about how … er,
screwed up, er, incredibly deficient , er, lacking the old route has proven. And hey — how ’bout all these profoundly insightful Autistic adults who know firsthand what it’s like to actually BE Autistic… mightn’t they have something to contribute.
We might, indeed.
So, I’m supposed to be resting today. Reading. Taking a break. But hell, this is big news, and I’m not about to sit this one out, when there’s so much to be lauded about it.
I could go on for hours about how the circle motif makes SO . MUCH . MORE . SENSE. But I’ll leave that to another blog post, after I’ve regained my strength. I’m still struggling after last week. And on top of that, I had a big get-together with 16 very chatty friends (old and new) packed into a 10×10 foot space.
Can you say sensory overload? Uh… yup. I will definitely blog more about my experience of hearing seven simultaneous conversations at top volume for four hours… and my ensuing glee that I didn’t completely melt down in the mist of it.
Oh, but I digress. Let the record simply show that I approve of this new direction that the journal Autism is taking. And I suspect a lot of other Autistic people like me do, as well.
Oh, except for those who hate it. We’ll always have some of those 😉