When using online spaces centered around autism, I noticed a huge shift between the 2010s, to after 2015 getting progressively worse around 2020.
Autism as a diagnosis is progressively getting to be a more common diagnosis. But because of that, a lot of people online and in person begin to expect Level 1 autism as the standard.
Actual constructive ways to be more Level 2-3 autism inclusive.
Accept that people in the autism community willl sometimes have intelectual disabilities
Be more inclusive to those who don't understand social norms. Do not expect autistics to have memorized social rules.
Understand that autism does come with needing extra help for some. You might have to adjust to their specific social needs.
Stop discussing autism as a superpower or as special interests as if they are magical/intelwctually give you an upperhand.
Fully reject cringe culture. NOT exclusively when it is convenient for you/quirky.
Talk with people. I cannot express this enough, but talking behind an autistic persons back about issues you have with them is still bullying, even if you yourself are autistic.
The way we show love or friendship might be overwhelming, discuss this with us if you have boundaries! Boundaries are not something hardwired into our brains.
Treat us like people, and like friends.
Finally, remember autism is not a quirky character trait. It's a disability. Please treat us (and yourself!) like it is one.
this also be part why like go back n forth abt “profound autism” too like - not going get into whole thing abt it not word enough for that rn (so many delicate nuance) but
like
on one hand: is very true, this group of autistic people — no functional communication, and or comorbid severe profound intellectual disability, need 24/7 supervision n support — exist, n VERY vulnerable. they need lots support n lots complex support.
research do show there no clear cut “subtype” of autism, that true also, but is also true n know first hand sometimes it important have quick word people understand what you talk abt, esp in emergencies, like there reason why we say “cake” n not “egg milk butter flour sugar salt” every time. or “high support needs.”
is also true so many people forget abt them ignore them! professionals, educators, researchers, autistic people, even people who advocate for nonverbal nonspeaking level 3 HSN autistic people.
on other hand.
are u give sth word so you can finger puppet easier
bc you describing perfect victim - victim who BY DEFINITION cannot speak out against you. n whoever do speak out against you, conveniently kicked out of that category, which then be dismissed as not real voice.
bc that already happening.
like can see there be good intentions n reasoning for that word.
…. are you advocating n using that word for good intentions n reasonings?
I read the post by a “severe autism” organization that was discussing the criteria for Profound Autism. I’m not deep diving into that post cause I already started a response to that.
The question I have is:
What do they think happens if they succeed in separating my son from the rest of autism?
If they were able to have their way and Profound autism made its way into the DSM, then what?
What do they feel would happen next?
Are they thinking my son would finally get the care he needs?
Or maybe they’re thinking the world would be more sympathetic if he were placed into a label that stripped away the nuances of his life?
Is it about control? A way to direct funding or shape policy by creating stories made just for institutions and lawmakers who struggle to grasp complexity?
Separation rarely leads to deeper care.
They are championing isolating my son. Institutionalization. Fewer rights. Less inclusion. Less investment in communication supports, autonomy, or belonging.
They are telling the world a story about my son that marks him as “too severe,” “too impaired,” “too difficult”
…someone who wouldn’t even be invited into conversations about his own life. Or someone who’s not even thought of within policy or futures planning.
They say, “This group has great needs but little research.”
But they contribute to the silence. They help feed the neglect.
And now they offer a definition that risks justifying more of it.
This designation doesn’t amplify more support, it absolves them off the responsibility they have in making the world more inclusive.
Separating my son from the broader autism community will not result in him being more seen and it leads to others not being seen. Why advocate for these systems to further decide who is worth supporting and who isn’t? Who will be seen and who will be warehoused?
So…
What will happen if my son is removed from the broader autism spectrum and placed with Profound Autism?
I suspect they don’t even know what they want to happen, let alone what would happen.
But maybe THEY DO. And that’s the real fear.
What if I told you that the online aspie supremacy movement is in one part a direct counter movement towards the 2000s and early 2010s ”autism mom” vision of autism. Which focused on the objectification of kids with high support needs and/or profound autism. Treating them more as burdens and nothing else. While treating people with LSN/would have had Asperger’s as ”just a bit socially awkward”.
I can pin point several things that prove my theory
The hatred for autism parents/caretackers. Not just the ”my child is such a burden” type. I mean even somewhat cheesy autism parents.
This mentality that autism is just a different way of thinking/a neurotype which negative impact is nothing more than the consequences of capitalism. Refusing to realize that some, even low support needs autistic people. Will still be disabled even in a non capitalistic society.
A lot of focus on people who are low support needs/level 1/have been diagnosed with Asperger’s before it was removed from the DSM.
The idea that all autistic people can advocate for themselves. Forgetting that some really can’t, they lack the necessary skills for basic communication and need caretakers and parents to communicate for them. Since they act like a translator. (But see point one)
Trying to apply issues that mainly impact high support needs/profoundly autistic people. Like immigration policies in certain countries.
Thinking all stereotypes against autistic people are against all of us. While sometimes, they aren’t.
Thinking the ability to mask is a bad thing and getting mad when people who can’t mask say it is a privilege to have.
And I’m saying this as a low support needs person. Like I’m legit diagnosed with Asperger’s and everything (I live in Sweden for context). What we don’t need to do as autistic people, is make it into a stereotype based on which side were listening to. What we do need to do is acknowledge that yea, it is a disability. No matter the support needs. I have things I struggle with, not just making friends but doing basic stuff like washing my hair. but at the same time, also acknowledging that high support needs/people with profound autism exists, and aren’t just something parents use as sob material on Facebook. That their experience are just as real. The idea that ”autistic people are superior” feeds into an ableist narrative that will hurt us all in the long run. We need to acknowledge people, no matter if they’re low, medium, or high support needs. Are just as autistic, we have similar experiences, but at the same time, also have unique experiences and social and systemic challenges.
I personally recommend checking out places Iike r/spicyautism for a good view on what HSN and MSN autism is like!
EDIT [14-6-2025] r/spicyautism isn’t that good (tldr non of autism Reddit is). One account I recommended checking out is Toren.Wolf on instagram, the account is about a high support needs autistic. person with adhd and ARFID whose mom is also on the autism and adhd spectrum. I also recommended the YouTube account Special Books by Special kids, which interviews people who are not only autistic but also have a cluster B personality disorder, rare genetic disorders, physical disabilities, and invisible disabilities.
The image on the left captures a Tweet promoting an opinion piece by Alison Singer. It reads: "Spectrum (Autism Research News) @Spectrum "P
"The image on the left captures a Tweet promoting an opinion piece by Alison Singer. It reads:
"Spectrum (Autism Research News) @Spectrum "Pretending people with profound autism don't exist by eliminating language to describe their symptoms is itself ableist," writes @ alisonsinger in this Viewpoint. @AutismScienceFd
spectrumnews.org Opinion: It's time to embrace 'profound autism' | Spectrum | Autism Research News
Ms. Singer's OpEd brought to mind the published opinions of Dr. Benjamin Rush, who believed that Black skin was the result of a mild form of Hansen's disease, and his pupil, Samuel Cartwright, who imposed the terms Drapetomania and Dysaesthesia aethiopica for the singular purpose of manipulating public policy in the slaveholding South.
Cartwright's abuse of science to preserve the inhumane enslavement of those who share my race (because he deemed it convenient to the comfort of himself and his southern white peers) is called scientific racism. So is what Singer and her small but influential group of frustrated autism parents and guardians doing by promoting this label as a means to a segregated end, scientific ableism?
During this moment, when the American Psychiatric Association is just beginning to confront and acknowledge the harm done by its racist past, witnessing these disingenuous attempts to bombard opinion pieces to force an unneeded label that centers the worst moments of high-support-needs autistics is extremely disturbing. This driving of the parent-created 'profound autism' label is too akin to that ghastly habit of legalizing harm through pathologizing difference. In other words, it seems like the ableist equivalent of scientific racism.
The long and intentional effort to diminish my nonspeaking autistic son's civil rights and personhood by the constant piling on of dehumanizing labels in the name of justifying their desired shift towards mandated increases in institutionalized methods of care and research that are to this day harming those meant to be helped should not be happening in this millennium. The ongoing horrors in institutional care settings should concern us more than adding a label to wrest control of where and how autism public policy and funds are distributed and managed. The autism conversation has wrongly followed the path of enforcing behavioral compliance. It is too much like the enforced compliance codified into laws and imposed upon my enslaved ancestors. It must find a new, humane direction.
The history of harm visited on my ancestors informs my worry. I am disturbed by individuals like Ms. Singer using crushing power to try and dictate public policy decisions based on their own intolerance for nonspeaking high support needs adults. BIPOC parents and our nonspeaking autistic offspring are powerless witnesses in a world where parents and guardians with financial power and racial privilege are the primary voices heard in public policy spaces. The money, networks of power, and platforms given to these adults cannot be matched by voices like ours.
How can my son and I fight for his right to exist as an autistic nonspeaking adult free from the conscription to the faux 'profound autism' label? The current definition of Autism Spectrum Disorder in the DSM V is all-inclusive and enough. And yet, a concerted effort to drive the term 'profound autism' into existence to segregate my son from his peers who use verbal speech is popping up in OpEds anywhere these influential parents' networks reach.
My distress won't ever be heard in white-dominant media spaces. But I keep coming back to Samuel Cartwright and how his invention of the term Drapetomania codified the pretext for slave catchers to use mental health as an excuse to harm ancestors who wished to be free and live in the same society as any other person. Scientific racism in research, medicine, and psychiatry has done irreparable harm to BIPOC Americans for years. There has not been a complete reckoning of the damage done to disabled Americans for decades, either. To see this continuing war for control of public policy through the creation of labels meant to push for reductions in community-based, humane treatments of nonspeaking autistics is heartbreaking.
Each time one of these OpEds appears, remember the scientific racism of Benjamin Rush and his student Samuel Cartwright. Labels matter; the wrong label, used as leverage to strip nonspeaking autistics of autonomy and humane approaches to living, only drags autism public policy back into the abusive world of institutionalization, seclusion, and harm. Don't just look at the attempts to increasingly impose the term profound autism. Ask yourselves why these attempts are happening. Save your offspring and mine. And help all their communication to be accessible, autonomous, and heard."
- Kerima Çevik, The Autism Wars
(Internet archive versions of 404'd links added by me.)
“We need to bifurcate the diagnosis of ‘autism spectrum disorder’ and add a new diagnosis of ‘profound autism’ to better serve this vulnerab
"To the broader public, the word “autism” now only describes the more verbal, traditionally skilled, visible end of the spectrum — because people who meet those criteria are able to have a voice, attend conferences, represent themselves at policymaking meetings and appear in the media. The result is that autistic people with severe intellectual disability and the most challenging behaviors have become invisible and been left behind."
The fact of the matter is that being in disability spaces online means that people you really look up to will go full force with their lateral ableism rather than considering for a second that they have a speck of privilege when it comes to disability.
"Who wants "profound autism"? Where is this push to "return to two diagnoses" coming from? And who gets to speak? What looks like a simple administrative term is becoming part of the attacks against neurodivergent self-advocacy: the term itself makes little sense, the people calling for it are untrustworthy & it won't do anything to help autistic people with higher support needs...so why is it suddenly everywhere? I look at some of the things that parents of autistic kids are being told, by organizations & individuals who are always at the center of the discussion.
This video was supposed to be an unscripted reaction to an article, but as I researched, I realized I needed to expose where this stuff is coming from, to share the things I saw. This is a critical time for disabled rights. RFK Jr & the MAHA movement will have consequences around the world. There are some powerful people out there who would love for you to distrust disabled self-advocacy, especially right now."
