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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More from @MorenikeGO

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Jan 20, 2022
(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
Read 18 tweets
Oct 18, 2021
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
Read 23 tweets
Oct 16, 2021
.
@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.
Read 13 tweets
Jun 19, 2021
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.
Read 12 tweets

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