If you’re the parent of an autistic child or adult, and also horrified by MAGA-style disinformation, please know you should be just as skeptical about getting autism information from “autism grievance parents.” Thread:
"Autism grievance parents" brand themselves as autism experts, yet promote reactionary ideas about autism and resentment towards autistic advocates, while encouraging followers to become too upset about having autistic children to question autism misinformation.
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Who are these grievance parents? They are generally—like me (@shannonrosa)—parents of autistic children with significant disabilities. Except instead of targeting “the libs,” grievance parents and the forums they run target autistic, disability, and #neurodiversity activists. 3/
Meaning, autism grievance parents actively target and try to discredit the very autistic and disability advocates who fight for to protect autistic kids’ rights, and improve their and their families’ lives. (Yes, this is self-defeating, and yet.) 4/
It’s understandable when parents new to autism to look to other parents for help. But it’s also crucial for them to understand that autistic adults are not the enemy.
When autism grievance parents complain that autistic ppl & their families don’t have enough supports? They’re right. But their solutions are wrong, because as outsiders to the autistic community they are trying to fix problems they don’t understand:
Let's be clear: Well-connected autism parent lobbying via media & research outlets for a "profound" autism label is not the same thing as making that label official. Also, creating that label would lead to segregation—not progress. Here's why, at TPGA:
It’s not surprising that certain parents of high-support autistic people are seeking to segregate their own children via the label “profound autism.” Parents often aren’t given good info on how to support children who have speech or intellectual disabilities along with autism. 2/
Parents may also feel isolated when autistic kids get lumped together, as when your kids' disabilities are obvious, it can be hard to recognize how they share autistic traits like a need for consistency or sensory sensitivities with kids whose support needs are less obvious. 3/
Hearing story after story re: non-speaking patients presenting w/significant behavior changes and urgent symptoms, and being dismissed or told they'll get eventual care. After advocacy resulting in faster care, turns out they had bad cavities, kidney stones, etc.
Too many high-support and nonspeaking disabled patients have their basic rights ignored, and are essentially incarcerated in hospital beds because informed and accommodating care is not available/training has not happened.
Now: @DonnieTCDenome is talking about how disabled people being mistreated and mis-accommodated in medical settings can lead to trauma, which in turn can lead to avoiding needed future medical care. This is a significant problem for healthcare access. #SAFEInitiative
Autistic PT Iris @warchall had SO much great advice about supporting autistic people with EDS chronic pain, injuries, dysautonomia, pelvic health issues, & other neurologic issues etc. that we're putting the highlights in a thread. Full interview here: thinkingautismguide.com/2022/08/autist… 1/
@warchall "Each individual PT or OT has their own specialized area of practice and specific skill set. If you need support for a particular issue, it’s best to seek out a PT or OT who specializes in providing that particular support." 2/
@warchall "I want to help my patients discover what strategies they as individuals can use […] and I think I’m more likely to be open to supporting my patients in using “atypical” strategies. I’m less likely to suggest goals that are trying to fit a patient to a “reference norm." 3/
Parents of autistic children (and adults) get advice thrown at their heads from every angle, all day long. If you’re one of these parents, you may be all done with advice. ALL DONE. And I hear you, because I am you. However... 2/
I have the good fortune to be connected with insightful autistic thinkers on this planet, who have transformed my parenting approach completely, and to the benefit of my son, as well as myself.
So you don’t repeat my mistakes, here are 5 bonks I made & how you can avoid them. 3/
The JRC says that they need to use [electric shocks] on the people who live there because they struggle with aggression
and self-injury. But the JRC is the only place in the U.S. that uses electric shocks to punish people with disabilities.
In 2013, @UN put out a report calling the use of the GED “torture”. The @US_FDA (which decides what kinds of medical
treatments can be used on people) put out a report 5 yrs ago that said the GED should be
banned. It still hasn’t happened. This is wrong.
@UN@US_FDA Yet the ABAI (Association for Behavioral Analysis International, the governing body of ABA practitioners) is letting the JRC defend the “ethics” of this torture of disabled people at its conference going on RIGHT NOW. This is unacceptable.
@swirlee@randallb If you prefer books, @awnnetwork_ *just* released “Sincerely, Your Autistic Child: What People on the Autism Spectrum Wish Their Parents Knew about Growing Up, Acceptance, and Identity: