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.
So obviously, to maintain that image, CFADB’s site also had to change.
In addition to this, NEXT purged an article called “Remembering Suzanne Wright,” (of Autism Speaks) from their site, that was written by one of their founders.
I encourage you all to go read the full article, and then think critically about NEXT’s statement about Autism Speaks in their FAQ section.
It’s not just that they’ve partnered up in the past. Their founders were good friends, and both of them helped co-found the CFADB.
In that same article, when talking about a “cure” for autism, Robert Smigel writes:
“There are parents of kids with autism who struggle to communicate, or have severe issues – like self-injurious behavior – who are entitled to wish for anything that could help their children.”
And when talking about the period of time in which a child starts displaying autistic traits, he writes:
“When it happens like that, to someone you cherish most in the world…acceptance isn’t the first thing on your mind.”
That’s not all of NEXT’s shady history, though.
Harry Slatkin, co-founder of NEXT, once publicly stated that he sometimes wished his autistic son would drown.
Yesterday I remembered that when I was around 6-7 years old, I learned how to make origami foxes in my art class at school.
Then, when I got home, I cut up a bunch of pieces of paper into squares, and then proceeded to make what ended up as over 200 foxes in just a few days.
They were all different sizes, but a substantial portion of them were smaller than a thumbtack.
I was meticulous, and the repetition of folding in the same pattern constantly didn’t bore me, it made me excited and happy.
I was so proud of how many there were.
That weekend, I scooped all of the foxes up and put them in a giant ziplock bag, then took them to church so I could give some away to people.
The congregants were astonished at my “patience” and “attention to detail.”
Looking back, this is such a classic autistic story.
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 :)
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?
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.