I’m up thinking about #ColorTheSpectrum (the media event with non-autistic celebrities, scheduled for April 30th, to raise money for an organization called Next For Autism that’s funding research to “prevent” autism).
And I keep wondering why so many people think this is okay.
Not a single member of NFA’s team is autistic. Not one of them.
And the CEO, Gillian Leek, also founded The Center for Autism and The Developing Brain.
Donations to NFA will go to that center. So what’s in the mission statement?
Ah, I see. Eugenics.
The most heartbreaking thing about this is that none of the celebrities participating in #ColorTheSpectrum are autistic, and none of the people who run NFA are autistic either.
How much longer do we have to scream, “Nothing about us without us!!” before people listen?
John Oliver, Jack Black, Mark Hamill, Stephen Colbert, and so many others are joining this event.
A lot of people have since withdrawn, including Colleen Ballinger and Rhett & Link. I really appreciate their willingness to listen.
But too many people are still not listening.
I have to say, finding out that John Oliver is participating was a gut punch to me.
I respect him. I admire his work.
And it makes me so, so sad that he’s joining in on this. I don’t doubt that he (or any of the others) have good intentions.
But that’s not an excuse.
The more involved I am in the autistic community, the more it shocks me how the majority of the public (including prominent figures) are still so unaware that it’s not okay to host events like this.
Autistic people are not your pity projects. We can advocate for ourselves.
Not all of us have the communication skills or access to AAC that we would need to be traditional “advocates.”
But many of us do. Including nonspeakers.
You don’t listen to what they say, either. So would it even matter if all of us could communicate in ways you understand?
It often feels like I’m shouting into a void.
When is neurotypical society going to wake up and realize that they’ve been going about this the wrong way?
When will they realize that we’ve been here all along, just waiting for them to listen to our words?
When will the day come, when instead of hosting a giant celebrity get-together to raise money to prevent autistic people from existing...
People with power and influence use their platforms to host & amplify autistic people ourselves?
Because we’re right here in front of you.
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Next For Autism and their partner organization, the Center For Autism and the Developing Brain (CFADB), are currently engaged in a gaslighting campaign against the autistic community.
Both organizations have changed & erased things from their websites, without acknowledging it.
First, NEXT added “Statement of Purpose” and “FAQ” tabs to their About section.
I was surprised to see that they didn’t have an FAQ section at all before they faced backlash for their association with CFADB and promotion of ABA therapy.
In the FAQ section (created as a PR front to deflect backlash, but never named as such) they say “[NEXT] provides no funding or support for research into the cause or cure of autism.”
At the time they wrote that, CFADB still had “causes, treatment, and prevention” on their site.
You’ll have to scroll down for a bit but you’ll find it soon enough. It’s not very far down. You can also do ctrl+F and type “Suzanne” if that’s easier.
But in case you don’t want to go through the Wayback Machine, I took screenshots for everyone :)
In one of my classes yesterday, we were talking about Sufi people who spin and chant repetitively as a form of worship & spiritual practice.
It made me think about how repetitive movement & vocalization is present in every religion I can think of (Praying the rosary, etc.)
In those contexts, repetitive movements like spinning in circles, rocking back and forth, touching & moving beads, etc. are not only socially acceptable- they’re praised as signifiers of devoted worship.
Chanting is the same. Repeating a word, phrase, or script over and over.
To me as an autistic person, all of this is familiar.
Stimming and echolalia are the words used to describe the same actions listed above, when done by autistic people.
Our repetitive actions are rarely praised. Often, we are punished or forced to stop instead.
I’ve been feeling emotionally exhausted and overwhelmed lately, and a lot of the reason for that is the fact that I’m managing this account.
The bigger it gets, the more people read my posts, and the more people comment or DM with their unsolicited opinions on my life & work.
I’m someone who takes other people’s opinions seriously, and it can be really hard for me to know when to mentally walk away from comments that assume negative things about me.
Because what if there’s a grain of truth in what they’re saying? What if I need to change?
I am constantly self-reflecting, and constantly striving to do better.
There’s so much about my life that people who don’t know me personally have no idea about.
But I’m a highly sensitive autistic person. It’s hard to stop things from getting under my skin.
Please stop assuming that autistic self-advocates have no understanding of, or proximity to, so-called “severe” autism.
In fact, many of us were (or are) ourselves labeled “severe” ; are parents of children labeled “severe” ; and/or are caregivers for people labeled “severe.”
Many autistic parents of autistic kids have children with high support needs and communication challenges.
I know of many all-autistic families, where each child has vastly different traits and needs.
This complexity is often erased in conversations about the ND movement.
Detractors of autistic self-advocates often insinuate that we are “not like their children” or that we have no understanding of “real autism.”
But those ideas are flimsy and they fall apart upon closer examination.