Exactly this. Disgusted by @Spectrum’s irresponsible tabloid-style journalism. Intentionally misrepresenting #neurodiversity to fuel this toxic manufactured autism “war” that helps NO ONE, especially those who would be considered to have #profoundautism. /1
Is the #autism “community” in a delusional time warp? Because the value of non-stigmatizing language & participatory #research is well documented in many fields. It’s not some new phenomenon conjured up by random #ActuallyAutistic ppl. Seriously? /2
Last I checked, the #DenverPrinciples came out in the early 80s. A rallying cry from the #HIV community for respectful terminology & meaningful community inclusion. And guess what? The field of research wasn’t DERAILED ONE BIT by adopting these critical changes. /3
In fact, partnering w/the community helped ADVANCE the d@mn research. Measurably! And there wasn’t a massive exodus of researchers leaving the field because they were now charged w/using more respectful terminology either. /4
“The #autism spectrum is TOO BROAD!” Lemme tell y’al something: YOU’RE NOT SPECIAL. You think HIV doesn’t have a wide, heterogeneous presentation too? From “elite controllers” to the person w/a minimal CD4 cell count? Or the multiple strains? Or HIV-1 & HIV-2? /5
In the same amount of time that the #autism “community” has spent needlessly fighting, #HIV has been transformed from a DEATH SENTENCE to a manageable chronic illness. And it has modeled effective engagement across communities who are VERY different from one another too. /6
There’s DECADES of literature about this. Google is your friend.
BTW, I easily found 15 existing respectful language guidelines online used by researchers in fields outside of autism. Are all those people are unreasonable & are “stifling” progress? morenikego.com/inclusive-comm… /End
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Kobe Heisler, Avonte Oquendo, Reece Watts, Jeremiah Degrate Rios, Omarion Humphrey, Maleah Davis, Keydall Jones, Rashaad Germany Jr, Duke Flores, Chris Castillo, unnamed 7 year old girl (hit and run), unnamed 10 year old boy (murdered), Jayliel Vega Bautista, Gabriel King.
Zavire Dion Portis, Xavier Hernandez, Jayden Morrison, Linden Cameron, Brian Alejandro Ripley, Liam Husted Brown, Hazana Anderson, Eliza Talalir, Mohamed Nour, Keyontae Holzendort, John Tecas, Maliyah Bass, Thomas Valva, Najib Masif, Antonio diStasio, Kyrin Carter.
(Waves in greeting.)
I see tons of #ActuallyAutistic folx chiming in on #Sia today, & I hope that you all will devote the same fervor to going to this link: iacc.hhs.gov/meetings/publi… to quickly make Public Comments for the upcoming US federal autism IACC meeting in April 2022. /1
I realize making Public Comment about #autism research & policy is not trendy nor exciting like celebrity news, BUT it’s a platform: iacc.hhs.gov/meetings/publi… to potentially help influence important issues impacting the lives of millions of autistic ppl & their families. /2
Currently, the “loudest” & most consistent/persistent voices who are “representing” autism are privileged non-autistic literal curebie martyr moms who openly tout institutionalization & sub-minimum wage employment as solutions for autistic people w/the highest support needs. /3
It has never been my desire to be someone who constantly has to call people/orgs out. Because believe me, I am far, far from perfect. But sometimes you try to work from within & folx tell you to STFU…leaving you no choice. A thread, & I’ma need serious signal boosting, please./1
Again, I TRIED to resolve this w/the individuals & the orgs most centrally involved. But that just resulted in me being gaslighted by @FamilyVoices & accused of “vilifying” others when all I wanted was equity for #ActuallyAutistic#Black parents/self-advocates./2
Recently, @FamilyVoices was awarded a $250,000 @PCORI grant designed to build capacity in the Black #autism community w/regard to engaging in research. Which is VERY much needed. Yay. Or so I thought…/3
. @JillEscher, I see you’ve-not-so-subtly written about me on the @NCSAutismOrg blog in which, among other things, you make a number of inaccurate, sweeping generalizations that erase me & my family’s reality.
You clearly want to talk ABOUT me. How about you actually talk TO me?
According to you, my family & I NEVER have to contend w/anything like “severe social-communication impairments, cognitive deficits, significant challenges in basic living skills, sensory dysregulation & maladaptive behaviors”, so presumably I can easily make time for you, right?
We “Potemkin Village” dwellers love to host dinner guests. I make a MEAN “mild” autism sauce. We can dine while we talk about how I’ve NEVER been at any of my children’s bedsides weeping & praying while they literally fought for their lives.
I respect Finn’s clarification & concur. Not all signatories experienced the specific conflicts noted in the memo- though several, named & unnamed, did. (I didn’t have personal conflicts either.) All authors share a desire for more inclusive, transparent practices @ ASAN, though.
I will try to make edits to the letter, but I have been having difficulty accessing the site it’s posted on, so I don’t know how quickly the changes can be made.
I do want to emphasize that as I have stated repeatedly, I harbor no ill will toward @autselfadvocacy. (thread)
The Open Letter is addressed to the ASAN Board & ED because that’s who’s in charge there. Not because I hate them, or want them to be vilified or canceled. Not because I have any personal grievances w/any of them (I don’t). That’s what makes this whole thing so painful to do.