Autism Speaks...for Change?? (Or Did We Somehow End Up In The Mirror Universe?)

About a week ago, something happened which, I believe, has the potential to rock the Autistic and Neurodiversity community to its core. No, society hasn't magically become a more accepting place, and no, people haven't magically become aware of the evils of ABA. What did happen, however, may be equally as big; Autism Speaks revoked their focus on cureism in their official mission statement.

For those who aren't aware, Autism Speaks is one of the biggest players in Autism advocacy. Unfortunately, they've also traditionally been one of the most damaging organizations in the public eye, promoting a dangerous vision of Autism as a defect and something to be both pitied and cured. They have run hurtful PR campaigns which have presented ASD as an epidemic and tragedy, and in so doing have alienated those of us on the spectrum in big ways. At best, many of us simply dislike AS for the things they have said...at worst? Psychological damage has occurred. The average person has no real concept of how bad Autism Speaks is for Autistics, however, since they've basically become the de-facto Autism charity. Everything from "Lighting it up blue" to the puzzle piece have all been created by this organization...often without even consulting Autistics themselves.

And yet...last week things have shown signs of getting better. Autism Speaks reworked their mission statement and removed any trace of cureist language from it. Gone are messages promoting the elimination of autistics; in their place Autism Speaks has made a great fuss about providing the support Autistics need to live full lives. It's a really nice and inspiring thing to see, and I'm hopeful that this means real change is on the way.

Ultimately, do I trust that this organization will do the right thing? I'm sorry...but no. The damage has been done and all of us in the Neurodiversity community feel far too burned to ever give Autism Speaks an ounce of our trust. Even still, I do hope that this means clearer waters ahead for those of us who are Neurodivergent. Autism Speaks is made up of humans after all, (and neurotypical ones at that)...isn't change supposed to be something we are all capable of?

As always yours in diversity,

Adam Michael

“Unintentional Ignorance”: Why Society Doesn’t Seem To Understand Neurodivergence And How To Fix It.

I’ve been doing a lot of thinking lately about how mainstream society treats those of us who are not neurotypical. It varies of course; condescending pity, genuine but misguided desire to help by doing things for us, assuming we aren’t capable of doing jobs simply due to the wiring of our minds, and so on. The one certain thing about all of it though, is that our modern world just doesn’t seem to know what to do with those of us who are different. It almost seems to baffle them that we exist at all! We’ve only very recently come to terms with the fact that it is perfectly okay for humans to have different skin colour, hair colour, eye colour, handedness, physical builds and many other variations, yet we still don’t understand that the same kind of diversity exists within the human brain itself. If we did, autism ‘treatments’ wouldn’t strive to normalize those on the spectrum nearly as much.

I know this is an old rant, and that I’ve had it countless times before, but I’ve had it driven home for me recently just how little people really know about autism, ADHD and a plethora of other conditions beyond the stereotypical propaganda. In my own experience, it has not been uncommon to find myself talking with someone at work or out in public whose heart is in the best of places but who also makes certain untrue and unfair assumptions about those who are neurodivergent. “Oh he socializes really well for someone with autism!” they might say, or “well you know, she can’t sit still because she has ADHD.” The crushing thing about such statements is that, while there is always an element of truth, they are overly simplistic and don’t give enough agency to the person they’re referring to. Not only that, but even more damning is that most people can’t help but have these assumptions because it’s the only side of this discussion they’ve been exposed to. Autism Speaks and a plethora of other organizations are to blame for that.

So how do we fight back against this rising tide of unintentional ignorance? Speak out, inform, educate. I’ve said it before, but for those of us fighting this battle, assuming that others should do their homework and inform themselves is a luxury we cannot afford to have. We need to be out there, talking about our own experiences as neurodivergent people, normalizing the existence of diverse permutations of human grey matter, and all around making it be okay for people to be true to who they are. I understand this isn’t always easy; some employers may not understand, nor might some close friends. Standing up might be difficult, but I would argue that if things weren’t worth doing they wouldn’t be a challenge. Only by doing this can we receive the assistance we need, while respecting our right to exist as people. In short, the only way to achieve the shift in public consciousness we seek is to lead by example and show people the way. They need us to SHOW them what to do with us...and that is to love and accept us for being exactly as we’re supposed to be.

After all, it was Mohandas Ghandi who said we “must be the change we wish to see in the world.”

As always, yours in diversity.

Adam Michael