(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
These “warrior moms” clearly feel threatened as this is the 1st time in its 12+ year existence that there have been more than 2 public IACC members who are openly autistic. They stop at nothing to disregard & discredit us so they can push their segregationist eugenic agenda. /4
They’re very focused. They rally their (handful of the same) supporters faithfully, who, in true obedient brainwashed sheeple fashion, flood the Public Comments with repetitive remarks about how much they are suffering because of autism & various causation conspiracy theories. /5
Go back & read the current comments. Read the archives. These ableist, narcissistic people are FRONT & CENTER, engaging ppl at the highest levels of government re autism bemoaning their circumstances & getting their voices heard with only us 7 autistic members to counter them. /6
And when we do so, they resort to manipulative emotive tactics. Pull a Karen about how they’re being “bullied” & call us “fake” or “high functioning” autistics. Then they blatantly exploit their children’s sensitive moments & challenges, & when need to, resort to abled tears. /7
Their tactics, though underhanded, are effective AF. Month after month autism parent “advocates” pressure the powers that be to consider regressive “solutions” that disempower the most vulnerable people in the autistic community while many of y’all are nowhere to be found. /8
So if you have 90 seconds to tweet & retweet about Sia, your @$$ has time & spoons to make a freaking public comment. At least balance out the d@mn voices. We need people to press for funding for AAC, comprehensive in-home & community supports, for services over the lifespan. /9
I’m #AskingAutistics to denounce harmful practices - yes, they’re still torturing disabled people who look like me & my kids, even if the #StopTheShock hashtag stopped trending. (Grateful that @Russell_Lehmann took the time to make a comment this month about the #JRC abuse.) /10
Read balanced, thoughtful public comments from Oct & Jan from @autselfadvocacy & @IEC_IDD. From @LindseyNebeker & @shannonrosa. From parents concerned about safety; the huge racial & cultural inequities; the lack of services. And add your voice! iacc.hhs.gov/meetings/publi… /end
Just quickly amending the thread as I realized that it might be helpful to give some additional context! For those unfamiliar or who’d like a refresher, volunteers are appointed to serve on the IACC to advise on all federal/national US autism efforts: iacc.hhs.gov/about-iacc/ove… /PS1
The IACC is federally mandated to exist to advise on autism related matters nationally. There are 20+ members appointed who represent different federal agencies & there are 20+ members who represent the public. The newest group will serve until 2024: iacc.hhs.gov/news/2021/iacc…
The link provided is one possible resource with templates/ideas/tips for drafting public comments (in general, not #autism-specific) that people, whether #ActuallyAutistic or not, might find helpful: publiccommentproject.org/how-to
This url: iacc.hhs.gov/meetings/publi… shares links to read current IACC public comments as well as past (archived) ones from Jan 2022, Oct 2021, July 2021…all the way back to 2007. An ongoing, obvious theme of ableism & eugenics & almost no counter-narratives or opposing views. 😞
(Apologies for any duplicates.) Public comment is for everyone - the comment from the “regular” person living their life is of tremendous value because you bring “lived expertise.” Here’s another optional, more user-friendly template: greatoldbroads.org/wp-content/upl…
Quick tweet to express my gratitude for everyone’s support in making public comments & RTing. I’ve tried to type this many times, but my words keep failing me; I don’t have the vocabulary to convey the depth of my appreciation. All I can offer is thank you, truly, from my heart.
#IACCForAutistics It’s come to my attention that the Public Comment and the Contact Us pages on the #IACC website are down; my apologies for that. Email is another route for #ActuallyAutistic people & allies to still send public comments: IACCPublicInquiries@mail.nih.gov

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More from @MorenikeGO

Jan 26, 2023
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
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Read 25 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
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@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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