Grievance Parents Are Autism's MAGA Movement — THINKING PERSON'S GUIDE TO AUTISM Horrified by the misinformation peddled by MAGA truthers? You should be just as concerned about grievance-based autism parent orgs.

These are not people who are forefronting their autistic loved ones' needs. There's a reason we also refer to #ProfoundAutism advocates as "grievance parents":

thinkingautismguide.com/2022/11/grie...

On the Scale of the Spectrum I’m not sure exactly when I learned how to dissociate.

“I also don’t think there is any shorthand label that would reduce the need for the lengthy explanations that I am now well practiced at providing whenever I introduce him.”

open.substack.com/pub/joyofj/p...

#autism #ProfoundAutism #neurodiversity

On the Scale of the Spectrum I’m not sure exactly when I learned how to dissociate.

“the reason I am not arguing for J to be “profoundly autistic” is partly because I believe it’s already obvious that I have a significantly disabled child who needs 24-hour support. Anyone can see this within a couple of minutes of meeting him.” -Louise Elliman

#ProfoundAutism #neurodiversity 1/2

My Comment for The Phantom Menace IACC Meeting Leo riding the Disneyland Monorail I rarely participate in committees or agency meetings unless I can do so remotely, so I've always appreci...

If the U.S. government truly wants to invest in ways to help autistic people and their families—and not in the cures and quackery flogged by IACC members, or the hateful " #profoundAutism" parent agenda of the I-ACC, then this is where to start:

www.squidalicious.com/2026/03/my-c... #IACC #autism

"If you think that non-speaking autistic people do not have a voice it’s because you’re not listening." TY @embergreen.bsky.social.

#autism #neurodiversity #ProfoundAutism

SEND campaigners to organise a nationwide demonstration to defend legal rights - Learning Disability Today SEND campaigners are organising a national demonstration urging the Government to protect and strengthen the legal rights of children and young people following the publication of the Schools White Pa...

SEND campaigners to organise a nationwide demonstration to defend legal rights www.learningdisabilitytoday.co.uk/news/send-ca... #autism #profoundautism

By creating this new I-ACC autism committee, Alison Singer and her " #profoundAutism" campaigners can finally, openly exclude autistic advocacy and rights from research priorities. They can focus on cures and treatments. This is not what autistic people want or need. The I-ACC is a bad project. 4/4

Selected IACC Public Comments, January 19, 2022 Meeting — NCSA [Public comments to the Interagency Autism Coordinating Committee are public record. Comments submitted for the January 19, 2022 meeting can be found here .] Lori Kay As the parent of an adult so...

Alison Singer & her " #ProfoundAutism" campaigners were really mad about the increased autistic IACC representation in 2022, because they wanted more "profound autism" parents. Even though other IACC parents/siblings *did* have high-support autistic loved ones.

www.ncsautism.org/blog//select... 3/

Another profound side eye at the #profoundAutism lobbyists—as yet another ND person whom you call “fine” because they could attend college is instead profoundly hospitalized because of insufficient supports. Stop making supports a contest, you ghouls. All autistic people need and deserve more help.

Don't fall for the fabricated label "profound autism." Instead, get your information about autism and disability from those communities—where people will think you or your kid are awesome, and will want you to feel the same way.

#autism #ProfoundAutism #neurodiversity #autistic #parenting

This latter condescending interpretation served as ammunition for Grievance Parents* who are thrilled about the “ #profoundAutism” label (is it to resonate socially?).

*Parents who prefer to gripe about autism instead of learning how understand how to support their autistic kids.

20/

Also not helpful: Some #ProfoundAutism -pushing parents of autistic people with complex support needs who seem to want to foreground their grievances more than anything else, also tend to dismiss autistic people who speak for themselves—especially if those autistics are self-diagnosed. 17/

And yes, autistic people with intellectual disability and language impairment were included in the "four subtypes" autism analysis. In fact, the list of features that have been shoved under the “ #profoundAutism” umbrella were split into two separate subtypes in that genetics study. #autism 16/

@ejwillingham.bsky.social also notes "that in the much-hyped genetics study characterizing 'four subtypes' of autism—which had important limitations and a troubling fuzziness—a subtype that did not emerge in that analysis was one that even hinted at the contours claimed for #profoundAutism.” 15/

"Nor is it clear why the presence of co-occurring disabilities like intellectual disability or speech apraxia should result in a different label [like #ProfoundAutism ], when co-occurring disabilities are common in autistic people and already accounted for by the DSM." 14/

"—for example, there are many autistic people who speak or who have higher IQs but who require around-the-clock services, and there are autistic AAC users who live independently."

#ProfoundAutism #neurodiversity #autism

12/

@autisticadvocacy.org's clear response:

" #ProfoundAutism" is just an attempt to rebrand the same harmful notion. The reality is that autistic people, just like people with Down Syndrome or Cerebral Palsy, have a wide range of abilities and support needs, for lots of different reasons." 10/

Labels can harm, but they also can help: See 'profound autism' Normalizing the term profound autism will help families more efficiently access the supports and services they need, giving people the best chance to live fulfilling lives with dignity.

…along with publication of a thrilled-sounding op-ed the ASF founder wrote. No surprise really, as she was a member of the Lancet commission, and once she got #ProfoundAutism into the report, she was free to run around wedging it into every news story she could.

www.statnews.com/2021/12/07/l... 9/

One reason for the media emphasis was the ready availability of the founder of ASF, who made sure that the organization provided a news release complete with ready-to-lift breathless quotes about how “thrilled” she was about the #ProfoundAutism designation…

web.archive.org/web/20260127... 8/

Media coverage at the time of the Lancet report focused heavily on #profoundAutism, rather than on the “need for better services and research for autistic people, including the need for individualized services, and research that prioritizes quality of life” that the report actually emphasized. 7/

ASAN also noted that the Lancet report's mention of the term “ #profoundAutism” was a “sidebar recommendation” and an “administrative classification,” rather than a diagnostic recalibration. (Journalists, are you paying attention? Is this thing on?) 6/

Functioning Labels Harm Autistic People - Autistic Self Advocacy Network On December 6th, a group of autism researchers commissioned by The Lancet released a report on the future of autism services and research. This report primarily deals with the need for better services...

…The Autistic Self Advocacy Network (ASAN), @autisticadvocacy.org responded to the Lancet report at the time, noting the harms that functioning labels cause autistic people: autisticadvocacy.org/2021/12/func...

#ProfoundAutism #neurodiversity #autism 5/

The ASF request for applications cites the 2021 Lancet Commission on the Future of Care and Clinical Research in Autism as validating the term “ #profoundAutism” to single out autistic people based on perceived function related to speaking and IQ scores, among other factors. Ahem. Thing is... 4/

Basically, the " #Profoundautism" label is profoundly useless, because "clustering autistic people under an arbitrary, demeaning label erases their individual humanity & needs" plus it shunts those who are nonspeaking &/or intellectually disabled into a medicalized, QoL-free corner of existence. 2/

Folks tend to assume that anyone who claims to be an autism advocate is working on behalf of autistic people's wellbeing. Unfortunately, that is often untrue—especially with parents who promote " #ProfoundAutism." Why? @ejwillingham.bsky.social explains in our latest, thread-worthy newsletter. 1/

"Autistic people need & deserve better services, especially those of us with the highest support needs. But the term “ #profoundAutism ” doesn’t help anyone. It does not provide useful information about why a person needs support or what supports they need." TY @autisticadvocacy.org. #autism

It was a very good day. ❤️ #ProfoundAutism #AdultAutism

"Autistics with Complex Support Needs" (CSN) is a far more useful term than #ProfoundAutism, & we recommend using it instead. We also endorse listening to people doing participatory work to improve the lives of autistics with CSN, like paper authors @dianatan.bsky.social & @drstevenkapp.bsky.social.

"The concept of ' #profoundAutism ' is deeply problematic. It risks reinforcing dehumanizing assumptions—that the absence of speech equates to an absence of thought, agency, or interiority, & that Autistic people with CSN are–as the Lancet Commission claims—'unable to advocate for themselves.'" 1/2

And please remember: Autistic wisdom, in this case about understanding and respecting varying autistic energy capacity—applies to ALL autistic people, *including* those with intellectual and/or communication disabilities. It is self-defeating for " #ProfoundAutism " parents to ignore such insights.