“Profound Autism” is Hidden from Social Media
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- Опубліковано 12 вер 2024
- 🌎 The world puts autistic people into two boxes those seen as “different” and those seen as “disordered”.
Let me be perfectly clear and that I do not believe the perceptions. The world holds are useful. ❌
That said…I DO think terms like “profound autism” can be useful in securing the ✨additional support✨ required by folks who fit this category .
People on the spectrum who are MOST vulnerable are the LEAST represented…and that needs to change! #autism #autistic #autismawareness #neurodivergent
I think she meant “just a bit different” from the outside perspective. There are a lot of disabilities NTs view socially as “just a bit different,” despite still being disabilities (blindness, deafness, limited mobility, etc). I don’t think using the term to describe how society views Level 1 autism takes away from the fact that it’s a disability. Yes, society tries to take away that it’s a disability if you’re “just like me,” but thats because our culture struggles to see the humanity of those who are profoundly disabled and so the two categories struggle to mix.
Even calling it Level 1, Level 2, or Level 3 is problematic precisely because it's a spectrum.
Each autistic person has a different profile of stronger and weaker areas. And people who can get by without a lot of support might still benefit greatly from having more.
@@jnhartonthis!!!!
@@jnharton Exactly. If I had a level I'd be technically level 1 because I don't require support with (most) basic care tasks, but my disorganisation and social issues and comorbid adhd are still strong enough to (apparently, after *finally* getting supports) warrant *two* social workers and more than that. And don't get me started on how long I've lived with massive sensory issues, however with the skill to 'suppress' and turning meltdowns into shutdowns and with severe psychological consequences from suppressing my needs.
I'm not 'just a bit different', it's still a pretty severe disability for me. And unmasking meant finally coming to terms with stuff like never being able to work full time and such, something that I've seen some 'level 2' people be able to do. (That doesn't mean this person requires less support than me, it's just this 'different areas' part that is so important to see)
Kinda like how a certain famous autism mom mother calls us “neuro different”, whereas her daughter is “real autistic”
@@jnharton"levels" would be accurate if it was a spectrum.
Less of a spectrum, more of a matrix
I have medium support needs and i feel like we are always left out of the conversation, but i cannot contribute effectively because social media stresses me out and I have a lot of difficulty with speech and expressing complex thoughts in a way that others can understand. The most i can do is a few text posts and UA-cam comments that get buried under the voices of people who can communicate more effectively than me.
I hear you loud and clear! It is difficult to not simply become buried in the mass of social media. You expressed well here, though, so that's something. I appreciated you for adding to the conversation. Your contribute may only be that of one, but it is still important!
I have medium support needs too. I would like to make videos but I'm struggling. Digital hugs to you. Do you know the sea sheep is an interesting and adorable ocean creature? I recommend looking it up.
Yeah, I don't even know what medium support needs means now. Pretty sure I'm on that stage right now, but even the levels are 'level 1: some minor supports, 'just a bit different'' and 'level 2: already high support needs'. Level 1,5 medium support needs, or stuff like 'I can communicate through text but there's no way I can do social media' is also just ... really meh.
I would encourage you to de-prioritize online life and build community IRL. I fear most of us are using social media as if we have a lifelong inability to feel social stress. We do need to push ourselves to build strengths, and soooooo many people are trying to opt out using social anxiety as the reason. Verrrry few people will ever be given a work exemption over social anxiety. They either have a more serious dx like agoraphobia, or they will be told they just have to work on it. I've coached numerous people, on and off the spectrum, thru this. Social anxiety may not disappear but it gets much much better, and it's worth it to live in the 3D world fully!
I hear you, friend! I’m somewhere in the middle too. You did a great job representing us in the comment above. Thank you!!!
This kinda reminds me of this one video where at one point someone says "you're not even the good kind of autism" which is such a big thing where autistic people have to prove themselves worthy to receive acknowledgement which is so messed up
that was from bobs burgers about not being good at math
That might have been from bob's burgers. I know the clip, and I can totally see how it can sound horrible out of context, but the moment in the show is actually funny- in case that's any reassurance :)
@@undefinederror40404 it’s also funny because Bob most likely would for the diagnosis also
Excuse me what is "good type" of autism? 😅
@@LoneWolfMikoto the ones that society determines to be worth something, which totally doesn't sound like this one political philosophy certain German, Italian, Japanese, British etc men tried to implement(fascism)
I'm honestly so confused how autism is categorized. My diagnosis is L2. On one hand, I am bilingual and have worked part time as an event manager (I've never been able to work full-time). On the other, I didn't talk until I was almost 6, couldn't read until 16, would elope into the woods, kick, bite, scream...I felt like a demon. I'm in my 30s now and can mask pretty well when needed...but my brain just shuts down when it gets overloaded. I go nonverbal, I can't push through it...I feel like a 50/50 split between low support needs and high support needs, and it's situational, if that makes sense.
Like...I can be the most adult adult...right up until I can't.
Sending you so much love, I imagine it takes so so much strength!!!
Well, and this is the perfect example of why people who are “lower support needs” and can mask and muddle through when needed still need support and accommodations. If you have what you need to avoid getting overwhelmed, you’ll likely have more days where you don’t experience that mental shut down and have to bow out of life to go regroup.
This makes total sense. I think you explained it really well and I can relate to some of what you shared , also. Thank you!!
Wow this was an incredible comment. I relate to this so much
Meditation saved my life. All autistic people need to learn how to and we are naturals. Also, a lot of the struggle comes from rejecting our autism. Like we think we are ‘failures’ when we fail to function like others. That is a self judgment we don’t need. Non verbal? Great! Reframe it as you have gone into temporary silent vow like the many monks. And don’t be hard on yourself and don’t hate your autism, self love is key,
Can you make a video about how the narrative of “autistic and adhd people are really ‘smart’” unintentionally perpetuates the idea that it’s okay to disdain, ignore, marginalize, and dehumanize people with intellectual disabilities?
^THIS
You're right. Autistic and ADHD people aren't any smarter than others. Some are geniuses, some are smart, some are average, some are stupid, and some are retarded (clinical term, not the slur). There isn't a correlation between neurodivergence and IQ. They're separate.
It also doesn't help those of who fit that box but struggle with executive dysfunction and all the unwritten social rules and expectations.
Even worse, being "smart" isolates one significantly from less intelligent people because they don't understand the difference between putting them down and trying to be helpful/correct misunderstandings.
It also dehumanizes the “smart” ones, too. And often they love the smart part of us until they realize the smartness is still part of the neurodivergence, and whoops you have someone who does not bow to authority nor care about social hierarchy, and is smart enough to know why, and *will not shut up*
Yes!
Absolutely! A lot of the supports I advocate for when I talk about autism don't actually apply to me. My version of autistic is listed as low support needs, because I can generally function in society (I can hold a job, live on my own, take care of my pets, speak two languages fluently, etc) but when I'm talking about support needs and options I talk about things that I don't need too (one-on-one support workers, communication devices, sign language, assisted group living, etc) because I feel like I have a duty to the community members of ours who can't do that kind of advocacy for themselves. If we're going to elevate the community, we can't in good conscience leave anyone behind: it shouldn't matter how big of a percentage of the community they represent.
I love your way of thinking
You are 100% right that people with greater support needs are underrepresented on social media and need to be taken seriously. Kudos for advocating for them getting the support they need. However, every autistic person has challenges - you wouldn't get a dx without having "the disorder kind". Even level 1 support requires some support, no matter how well they may appear to function on the outside (or on social media).
Exactly. Calling one extreme "disordered" and the other "slightly different" implies that low level autism doesn't necessitate support, which it does by definition
Yeah I agree that the overall message of this video is a positive one. I am glad that someone said it! But also I am concerned about using terms like "just a little different" because even though I think she meant it like that's how non-autistics view people with level 1 asd, it's not how we really experience things. And I don't want non-autistics to think that it's an acceptable way to refer to people whose struggles aren't as apparent.
@@frohnatur9806 She acknowledges and highlights this in the description!
@@TheCorty she does mention in the description that those labels are supposed to reflect how neurotypicals see it, but nowhere in the video or description does she mention that low level autistics are disordered too, or that they need support (again: BY DEFINITION).
If you're just a little different but can handle life without any support, guess what? You won't get a diagnosis. You'll be told you just have some autistic tendencies.
To be clear: I think she's well intentioned and doing a lot of good for autistic people. So I'm not saying "you suck, stop what you're doing" or something like that. I'm basically saying "please be careful with your phrasing next time, as to not accidentally harm low level autistics to bring attention to high level ones."
This phrasing is harmful, because low support needs autistic people
- often superficially pass as neurotypical, due to masking and non-obvious traits
- are the ones who most likely interact with other people (eg. employers!) who don't know (much) about autism on their own.
So unknowing neurotypicals who see this video are most likely going to conclude that their autistic employee is just "a bit different" and doesn't need support. They'l expect the same from their autistic employee as from any other. Then, as the employee inevitably doesn't deliver, they lose their job, or at least have a harsh time at work, because "they're just lazy/making excuses"
I've not been diagnosed, but if not for my having a really rare part time simple job which pays full time wages, and a whole bunch of DIY skills, I would need support. I'm being accidentally and unintentionally supported but have a whole lot of autistic traits, which I've learned to hide.
Autism is a spectrum, so we need to advocate for all of us.
I didn't understand what she said ☹️ She speaks fast. Amazing that you understood her speech.
@@yourKING7 "She speaks fast. "
You can change the playback speed of the video with the little gear in the bottom right of the video.
Yu can also turn on subtitles if that helps.
@@vinny142 And you understand everything she says?
@@yourKING7 Very much so.
@@MandarinaPink Do you speak like her?
To start with, everything you said about high supports needs autistics is spot on. Totally agree they need more representation. I'm glad you're making this video to advocate for them.
But... question, and this is asked in full faith as someone who is low support needs and was diagnosed as that at 37 years old less than a year ago and still desperately trying to fully understand what all this means, is "profoundly autistic" an actual medical term? And should it be if it is/isn't?
The only times I've come across it are when it's actually used by certain segments of the community, most notably parents of high support need autistic people, to tell lower support needs people they don't belong in the community. That we're not autistic or that the medical community should bring back the Asperger's (or a comparative new) label/diagnosis. One such person who's used it even gave an example in a video I watched that if I had seen it before I got evaluated might have kept me from GETTING my evaluation thinking I was just gaslighting myself about my struggles and my experiences and that I had no place even considering it, precisely because I am "highly functional". Because I am not "profoundly" autistic. Because I was SOOOOO incredibly similar to the example that person used.
Higher support needs autistics NEED more recognition, more representation. HARD AGREE. The way users of social media consume media, the way the algorithms are written to drive engagement is definitely amplifying ableist bias and pushing them off platforms when they try to utilize and engage for sure, and societal bullying is a problem. But, in my limited time so far... I just wonder if this label is also creating an unwelcome and unhelpful divide that isn't helping them either?
Thoughts?
While high support needs autistic people obviously need recognition, I'd argue low support needs autistics need it more. After all, it's anything but obvious, that somebody who seems "slightly different" or even neurotypical from the outside (due to masking), has some severe struggles with everyday tasks that are trivial to neurotypicals and needs support. Also low support needs autistics are the ones to most likely have a job, and therefore need employers and co-workers to recognize their disorder, so they can get accommodations and a bit of understanding.
High support needs autistic people will rarely meet anyone on their own, and also not fly under the radar.
If a neurotypical who never had anything to do with autism met a high support needs autistic person, they'd probably think something like: "This person obviously has some mental disorder. Could it be autism? Anyway, that weirds me out, because I don't know what to expect from or how to deal with them." Then whoever might accompany them can help ease along the interaction. They'll start off by being understanding towards this person that obviously can't help but act differently. If the neurotypical is informed about the autism, they'll think something like "ohh, that's what it is!", possibly expanding their understanding of the autistic person.
If a NT meets a low support needs autistic person, they're not gonna think anything special, except maybe that that person might seem introverted or socially awkward. They'll then proceed treating them like any other person and expecting as much from them, having zero understanding if the resulting behavior isn't neurotypical. If the NT is informed about the autism, they'll likely react with disbelief ("everyone's autistic these days") staying at zero understanding.
To be clear: By "understanding" in this context, I mean the recognition that the person in question can't help but be different, alongside some amount of readiness to put in some extra effort and excuse some behaviors they wouldn't excuse coming from a neurotypical
Also: What video was that? I'd be interested in watching it
Agree with this full stop. As far as I can see, this kind of talk about people just being "Neurodifferent" and not "Autistic" or "Disabled" doesn't do anyone any favor.
Not autistic, so feel free to ignore.
The problem is that it’s much easier to support low support needs autistic people (by definition). So it’s tempting for society to stop its autism accommodation at some sensory rooms and an awareness campaign.
If we call them “highest support needs”, these are people who need far greater investment just to survive yet must rely on caretakers to advocate for them. So there’s a risk that they’ll be drowned out in a sea of LSN people and their needs will go unmet. This is unfair of course, neither you nor they should have to compete for support. But in reality attention drives effort and funding. So it’s worth reminding everyone that some people need expensive round-the-clock support. As long as it’s made clear that all autistic people need some form of support everyone wins.
@@taylor3950 The problem is people with "low support needs" have higher expectations from the people around them and at the same time less obvious or easy to solve issues in their day to day life.
I should clarify that I'm not saying people with bigger support needs have easier to solve problems, but I do think it is much easier to overlook the struggles of "successfully" high masking individuals
You aren't wrong - on the one hand, we've come a long way since "Rain Man" was the "face of autism" to the public - which is good. Now we've swung all the way from one end to the other, though. It's about time the public sees the whole spectrum...
'Rain Man' real life inspiration wasn't autistic though. Kim Peek had savant syndrome and low IQ but wasn't autistic, he has suffered a traumatic brain injury while a baby. I think a lot of people get confused about that. Autism is genetic.
Now people think Autism is simply a "mild" condition and every Autistic person is low support needs. It's so bad that they think Autistic traits are just cute quirks when that's not true.
@@brookelynrhodes1998There's enough people online who claim to have autism and only make it about "quirks". It's not other people's fault that the majority of people online do this.
@@brookelynrhodes1998Even the ones who say it's bad for them end up making it some thing to feel superior over the "neurotypicals"
@@neonice Autism isn't quirky but the majority of people don't say it is. I don't know which side of social media you're on though.
THANK YOU. I used to work with children who had profound autism. I also have a cousin who is somewhere in between and I almost feel like he gets the worst of both worlds sometimes, he is able to perceive his differences and how he's received by others but can't do anything about it. He's extremely lonely. He would love a girlfriend and family but doesn't seem to be able to find anyone and couldn't cope with a baby. He is watching his family peers grow older and have families and total independence and he won't ever have that.
I had my lightbulb moment working as a support worker for young adults, living independently with learning disabilities, many had profound autism. I soon realised my manager had low support needs autism. She would feign shock at my dark satirical humour, I could see her socially awkward side. I could relate to some of the struggles facing the people I was helping, although theg faced them on a much bigger scale. It was great advocating for them. I became adept at getting debts cancelled from "free" trials etc.
In some aspects one of my toughest jobs, but I learned so much from those guys.
I am a one on one aide for a young woman with profound autism and further medical complications, and this just made my day!!!! I follow several UA-cam accounts of families with nonverbal family members, and while I wonder about the ethics of sharing someone’s life when they don’t have the capacity to consent, I’m also incredibly grateful for those accounts, who bring more awareness to a community that is largely ignored by society.
fatheringautism uses ABA and profits from their child without consent. look up Paige Layle's video reacting to how they treat her.
I like your comment because I see your point. I wish social media was more accessible to those of us with profound autism so that there would be more fair representation WITH CONSENT of all types of autistics and so that awareness and especially ACCEPTANCE of all expressions of autism (and many other conditions and disabilities for that matter) would grow. ❤
@@aerialdiveYea I believe you're right. I know of a few other parents who show their kids with autism issues online but I don't think any have consent of their children (regardless of the terrible mess that is any form of ABA) and I fear all of them profit off their child's videos. I am convinced some parents really believe they are doing the right thing, but in terms of ethics I feel this is entirely debatable.
@@nanimalgirlEssieIf profound autism necessitates a lower IQ, you hit a point where people are never going to be capable of informed consent.
I don't know that it does, I'm just pointing something out. And it's true. At a certain IQ level, a person is stuck at the level of a child. They will never be capable of informed consent.
And then the question is do you keep them hidden because they can't consent? Do you show them because otherwise this side of things doesn't get covered?
And as far as profiting off the videos, in the US everything they need is going to be wildly expensive. It would make the most sense to use any money from UA-cam to pay for medical needs.
Again, I don't know. I especially don't know about individual cases. But with most things, this is far more complicated than it seems at first glance.
@@smol-one It IS far more complicated than at first glance, I agree, and I especially appreciate your fourth paragraph (the penultimate one), where you mention cost of care. That is also a point that can't be denied to be true, and may have people choosing to veer away from further ethical thinking and lean more on pragmatism and into practical situations. Thank you for posting your thoughts. I find them valuable and hope others will do so too. Personally I am not well-informed enough to understand below which IQ range an individual could not make an informed decision about social media anymore. There are so many levels of complexity to social media and its hazards, and a lower IQ, in my opinion, in itself does not guarantee a lack of understanding of all of those levels. But, that being said, your argument of there being "a point where people are never going to be capable of informed consent" also fully stands. Thanks again for posting.
I am not "just a little different" though. I was diagnosed with Level 1 autism, yet I need regular supervision despite being 18 years old or I will not eat, drink or wash myself properly. I will lose track of time and not do anything because I get caught up in my interests. I can't travel without substantial planning and preparation, going out for long periods of time ends with migraines and isolation. If something wrong happens, I panic or melt down and my communication decreases significantly. I'm Level 1, I have no cognitive delay, but I'm still not "just a little different" autistic
I feel the EXACT same way - I get you
@@JadeLeahPilling01 Thank you!
Sameeee
I'm late diagnosed in my 30s level 1 ASD. I actually need a lot of support like you, and I was told my whole life that I just need to challenge boundaries and try harder.
A personal story- 20 year old me, not even aware of my own autism let alone my own family knowing, traveled halfway across the world on my own even though I struggle with things like keeping up with time and getting lost. I almost got stuck in an airport on the way there, I missed a flight on the way home that had me spend a whole day in an airport far from home. Boy, that was awful and could have been dangerous since one of those airports was in a hostile country.
I think dats y she put it in air quotes. Cause we autistics r profoundly aware of dat (well 2 b fair she did say "didn't need 24/7 supervision" but she's mentioned B4 it's a spectrum.) It's more so how average ppl c us. I will say I could b wrong, n will openly listen 2 any debate/discussion in opposition of what I think
Side note: this is just an extra point n a change of language I'm tryna 2 spread. I use "average" as "opposed" to normal. "Normal" is a colloquial term implyin da adverse of it is "abnormal". "Average" is a math term implyin the "average" of a particular group pertainin 2 a particular characteristic. As in da "average" person is not Autistic
I have a hand disability dat makes typin painful n usually my partner is asleep wen I'm usin Reddit so I can't scream at da talk to text which is required cause of my speech impediment so I use phonetic shorthand dis is a copied message to
Sometimes I bite someone when I’m overwhelmed. And by “someone” I mean myself.
The reason my mum doesn't believe I have autism is that she worked with profoundly autistic people. I have been professionally diagnosed but she doesn't know. A lot of neurotypical people think this is the only type of autism and it can make one's a "little bit different" world a very lonely place to be.
Kaelynn, thankyou so much for bringing this up! Both of my young children are Autistic and have very high support needs. I have no idea about how I can help others understand them without breaching their privacy. Others don't really get them unless they're around us a lot. And the kids ability to be in public for any length of time is limited. Safety is a huge concern for us.
I have “just a little” but I work with people who need constant supervision. That exposure, scratch that - that relationship allows me to see their struggle. I have a harder time understanding the struggles of, say, the people in this comment’s section whom I will never meet. A lot of lightly autistic people come to the internet to commiserate, and that’s just not me personally. My autism sneaks up on me to where I’m suddenly reminded, “oh, yeah, I’m autistic, better find a workaround” and that’s not most people’s experience. Most people are keenly aware or constantly reminded of it. We’re all different, and we all meed compassion. Be there for people when they need you. You have something valuable to contribute.
Agree that L3 and L2 people need more representation and their experiences need to be taken into account in any conversation about autism. However it is a disability for all of us and I don't think that "just a little different" is a good framing here. You are disabled, I am disabled, we are all disabled. To different degrees, yes. But it's not just a quirk.
Level 1 ASD is like missing a limb, level 2 is like being paraplegic, and level 3 is like being quadriplegic. They all need support, but some need more than others.
This is a great analogy IMHO. It's difficult to get people to understand support levels and people tend to think level 1 is zero support. But actually I still need support and tools. My care and needs dont look the same as level 2 or 3 but it's not less valid of a need. Similarly, level 2 or 3 absolutely need the support they need in order to have quality of life. I might not need support all the time or can learn strategies where they might need more resources from the community or society. It's not a competition it's different needs.
That's not a good analogy, there are no benefits whatsoever to losing a limb. Autism often comes with strengths, it certainly does in my case. NTs are the problem.
@@starfleethastanks first of all, no analogy is perfect and secondly, autism, regardless of level is a disability. I'm tired of people saying autism is a gift or a difference. Yes, it's true in many ways but if the world were created for everyone to be missing a limb, being an amputee would be a lot less of a disability because of the social model and universal design. Level 1 needs support and it also isn't superior to level 2 or 3. The analogy describes the difference in the different types of mobility disabilities and how they all have needs but they are different. Don't diminish the need and different just because it's not "a perfect analogy"... And let's also not talk over level 2 and 3 like level 1 is superior because it's not.
@Hi_Im_Akward the analogy is good, but looking at autism in terms of levels isn't, it is outdated and simplistic. We all have our different levels of executive function and support needs which can even vary so I prefer using those.
I am also not a fan of the term "profound autism" since it can easily be used to hurt those covered by it and itself used unreliable systems to define it. IQ is not a thing in the way it is used (and here is defining people by low intelligence when it given the right conditions such might not be the case even whilst they still don't have strong executive function). Instead again, long term high support needs would be far better and more individualistic since it refers to what the person actually needs rather than a vague set of terms.
@@psoma_brufd I don’t argue that it’s simplistic but the descriptions of levels 1-3 are from DSM-5 which is the most current version.
About time someone pointed this out in a highly visible way! I really resent the "it's not a disability, the world just doesn't suit us" rhetoric. Sure, for ME my autism isn't seriously disabling and I wouldn't cure it, but for my brother, who's almost totally nonverbal and has other severe impairments, I think he perhaps would want to be able to change his experience if he could informedly consent to possible cures. People being defensive of their OWN autism experience is fine, but I hate it when people categorically are like "we're fine we're not suffering don't try to give us options because we don't want to change" eff that, they don't speak for everyone and fail to realize they're privileged just by being able to be online and speak for themselves
The problem is that people are autistic because their brains are wired much differently from everyone else. So when people say they want to cure autism they really mean they want to make sure autistic people are aborted in the womb, because curing autism is impossible, at least curing all autism is practically impossible since the wiring of the brains of each autistic person is still very different and there isn't going to be a simple fix. We also know certain genes are related with autism but they don't always occur the same in all autistic people. Also maybe your brother does want a cure, but if you cured him he wouldn't be himself he'd be a completely different person, and what if he doesn't want to be cured, he can't verbalize that at least I assume. What if you couldn't talk and someone started picking at your brain because they thought you would want that? Maybe I'm overreacting a bit but shouldn't we at least be leaning more towards finding ways to communicate better with nonverbal people before trying to decide what they want?
I 100% agree with you. Autism represented as a whole spectrum is rarely ever represented at all. I've met profoundly Autistic people and they're basically what you describe. Very delightful people but badly disabled by their deficits. A lot of people refuse to acknowledge that side of Autism too and it's unfortunate. I'm lucky to be able to do things like other people do like, talk very well, understand social rules, and navigate the world safely. I can be trusted on my own, but that's just not the case for many of them.
Have you listened to many of the profoundly autistic people who have shared their experiences in videos, blogs, in articles or books, by any chance?
One person like that is Damon Kirsebom. He made an excellent short youtube video called "Reframing Severe autism" where he shares his experenices of having severe autism (what would now be labelled "profound autism").
There are others like him too, happy to share names if you're interested.
Yes!! Somebody said it!!! Thank you Kaelynn!!!
I have a couple of good friends with profound autism, and I don’t think I’ve ever seen an autistic person with their levels of support needs portrayed in the media. It makes me sad because people don’t realize that they do want to communicate and form bonds with others. They want relationships beyond the occasional “hi, how are you doing?” in passing, and they don’t want to be treated like a child. A friendship with someone with high support needs is not a burden. The friendship may form in a slightly different way than what you’re used to, maybe with a different style of communication, but it will be just as real of a friendship as it would be with anyone else. Everyone who chooses to ignore profoundly autistic people is missing out.
Tyvm. I had to unfollow some
Content creators that wrote post after post about how it’s so rude to say severe autism (she didn’t mean that we should say profound instead) and slight autism.
I have a friend with 4 kids, 1 has profound autism and one is “just a little different”. Consequently one is severely disabled and one is just a little different. My friend is enraged by “autism awareness” as the disabled one really needs to have their suffering fixed, not accepted as is. The just a little different kid is great how they are.
Note: I don’t mean to imply that disabilities necessitate suffering. Language is difficult.
Have you listened to many of the profoundly autistic people who have shared their experiences in videos, blogs, in articles or books, by any chance?
One person like that is Damon Kirsebom. He made an excellent short youtube video called "Reframing Severe autism" where he shares his experenices of having severe autism (what would now be labelled "profound autism").
There are others like him too, happy to share names if you're interested.
I really appreciate you for bringing this up! I'm neurotypical but I have an older brother who is autistic and he can live on his own as an adult, but he required a lot of support for all his learning and behavioural issues growing up and will likely need support from us family members his entire life. I would love to find resources to support him as his sibling, but most advocacy and resources I encounter are by and for higher-functioning autistic people. At the same time, me sharing my own struggles with growing up with my autistic brother and having to contribute to supporting him despite being years younger than him might be seen as ableist because my experiences challenge the current preferred representation of autistic people as "just functioning a little differently and needing a little more support". But the reality is that there are autistic people out there that need a lot of support and they also need representation, even if just to reduce stigma. And their families also need representation so they can get proper resources on how to best support their autistic family member and to get social support and understanding from others who may struggle to even imagine what living with a high-support autistic person is like.
I'm in favor of using the term "profound". I have a profoundly autistic cousin and a profoundly autistic niece, both of whom have learning and communication deficits. They will both need lifelong care. One major issue with social media is that profoundly autistic people are almost always under a legal guardianship and are not generally "allowed" to participate. The autistic community tends to get up in arms, deservedly so, when such profoundly autistic children are portrayed on social media, because it is de facto without their consent since they're unable to give consent -- and in addition, the guardians of such children (and adults!) are in danger of being exploitative if they feature them in posts. They are hidden because of the cultural norm around this kind of portrayal being perceived as exploitation. I don't know how to solve that, but I believe it's a major cause of why it's hidden.
Have you listened to many of the profoundly autistic people who have shared their experiences in videos, blogs, in articles or books, by any chance?
One person like that is Damon Kirsebom. He made an excellent short youtube video called "Reframing Severe autism" where he shares his experenices of having severe autism (what would now be labelled "profound autism").
There are others like him too, I'm happy to share names if you're interested.
Preach! We cannot forget those of us who face more challenges both internally and externally (discrimination). All of the spectrum should be represented, but the communication differences just within the spectrum are so wide it’s only natural that those of us who are very communicative overtake those who are not. So we must keep in mind to advocate not just for ourselves but for more vulnerable and less privileged folks with profound autism.
"Profound" is the word I've been looking for to differentiate people like my brother vs myself and my wife. Thanks for that video.
On an unrelated note, I swear I saw Kaelynn In a brewery when I went to Charleston for a business trip. No idea if that was actually her, but I wanted to go up to her and ask.
Thank you! Thank you so much for saying this. I'm a parent of an autistic child who made the mistake of trying to find advice from the autistic community online only to be even futher beat down by those with lower support needs than my son. It's been so disheartening.
I wonder if autistic people with level 2 support needs are becoming the neglected middle children of autism? While there is still ignorance of all forms of autism, those of us with level 1 support needs are able to speak up and advocate for ourselves, while those with level 3 needs are likely in institutions, and have teams of carers to look out for them. Level 3 needs are probably what most peoples perception of autism looks like.
By contrast, I'm not entirely sure what level 2 autism even looks like.
I'm level 2 and intellectually gifted. Diagnosed as a child back in '91. I attend a support group where most are considered level 2 and have a traditional aspie dx, meaning all attendees are pretty much on the "severe" end of Aspergers Syndrome. I know from experience that I'm always supposed to "know better" because of my IQ, while simultaneously I experience the same issues as everyone else, and while my level of disability due to ASD qualifies me for having assistance at home for example, my IQ disqualifies me for this.
Most level 2's in my age group and with my cognitive level still live with their parents and are underemployed or unemployed. There's just a few exceptions I know of, but even me, who the therapists consider a "great success" spend at least 3 to 4 weeks per year in mental health facilities. Excessive hoarding is common among level 2s, especially those late diagnosed or without support.
Level 2's are generally the most f*cked group in autism. Often just "normal" enough to evade institutionalization for life, while simultaneously incapable of thriving without significant support.
@@aileenmarzanna Sorry to hear the situation where you are :( I'm also diagnosed as level 2 also but I'm lucky to be somewhere where I can get funding for a lot of the supports I need (most of the therapies aren't covered though)
I wonder how it would be for someone like Niko Boskovic, who is intellectually gifted like you, but was originally diagnosed as having an IQ of 30 or below because his apraxia was so severe he couldn't perform on the test. :/
Many of the autistics with the highest support needs (i.e. need 24-hour care) don't actually have intellectual disabilities, (if by intellectual disability is meant: slower learning new concepts, etc. Though obviously they still can have severe difficulties with daily living, like, e.g. turning pages in a book, initiating actions like turning on their device or getting a cup from the cupboard, brushing their teeth).
It's so wrong to base support on IQ :(
@@aileenmarzanna I don't have an autism dx but I was diagnosed with ADHD at age 19. I don't know if ADHD has "levels" in the same way but I've been trying to figure out what "level" mine is at so I can kind of gauge my abilities (as in "am I pushing myself too hard by expecting to be able to do this?"). And after reading this I think I'd be at a level 2 as well.
Thank you for this. I work with kids who fit that description of profound autism. For years I felt like I relate to them in ways I couldn't explain, yet because of my abilities to function independently and disguise certain things (now I know called masking), that I couldn't be autistic. Now I know better. And it's made me want to do even more to speak up for and help these kids who can't speak for themselves. I'm still working on how to accomplish that, though.
No, I will not use “profound autism” for my son. He’s autistic. The DSM doesn’t have “profound autism.” I don’t know what his IQ is and I will not be limiting him at his young age.
I fully agree with this but I felt like sharing that my parents never sought out help for me as a kid because they only knew about the more profound autistic people, higher functioning folks just didn't really exist to them, and mostly it was due to the lack of representation. I think we've done a great job in my lifetime of moving the needle but maybe we overcompensated :/
And while I was able to manage most of my life without a diagnoses it's all catching up with me as an adult and all the many years if masking has been borderline traumatic
I would say very high support needs but not “profound” bc this implies that you can be more or less autistic which isn’t true. But you’re right. They need to be represented and be seen as well as get their support needs!
Hmm I get what you mean, but I personally find this a really difficult topic. On the one hand I fully agree with you, we don't want to downplay ASD in people who are very independent. They still have ASD.
On the other hand, the spectrum is very very _very_ long. Ranging from those who find themselves to be very introverted and often tired but managing, all the way to people who cannot speak, cannot take care of themselves and who will loose it when their daily patterns are disrupted by even a 30minute delay.
I love using need for support as an indicator, "very high support needs asd" defenitely works better than "profound asd" in my opinion. But looking at that long spectrum and its outer ends.. I do feel inclined to say that some people have more autism than others. Otherwise I personally feel a bit like I'm downplaying the sometimes extreme struggles of those with very high support needs.
But this is an interesting subtopic that I like seeing other people's stance+reasoning on :)
@@undefinederror40404 The spectrum isnt a line, its a circle
You can absolutely be more or less autistic. I have high support needs but that is because my autism is more severe than someone with low support needs. The reason
High functioning autistic people claim there is no such thing as a linear spectrum is because they mask autism. However a lot of people who choose not to mask still are able to obtain Neuro typical lifestyles . While others with severe autism and cannot mask still have high support needs. Because, well they're just more severely impacted. 🤷
@@heyikenzie4731but that would make the spectrum not a line then? Most of my friends are also autistic and we all have different needs completely with different levels of support in different places.
@@heyikenzie4731I know someone who can kind of mask but still has a job and lives a neurotypical lifestyle on the outside but she really doesn’t and it’s exhausting for her so they cant actually live those lifestyles because that would mean they were successful at it and usually they’re not they get burnt out and have meltdowns and can only mask for so long. And most of the time they don’t do it on purpose or even know they’re masking.
Thank you for making this video Kaelyn, it is so important. And educating me on a new term that more accurately describes ‘profound autism’! I am very appreciative of all your work
That's my son you've just described. Thank you for this ❤
My oldest son is profoundly autistic/level 3. We enjoy your channel very much. He has similar sensory issues to yours which he relates to. Plus he enjoys seeing your fidgets. Thank you for bringing awareness to those who are less seen on social media. ❤
Thank you so much for saying this. I have 2 kids with autism, level 1 and level 3. There are commonalities to how the two kids experience the world, and both of them need love and acceptance and support. However, when I and my husband are no longer able to support and protect them, one is basically going to be able to live a normal life. The other is going to be highly dependent on societal supports to feed him, clothe him, protect him from exploitation, and give dignity and purpose to his life. And this is terrifying, because we don’t know what supports will be available in 20 or 60 years. I like watching content from adults with autism who can give me insight into how my kids might experience the world. But it is very frustrating when people speak as if their experience is representative of autism in general, and particularly when people advocate against supports that many severely disabled people need, like guardianship or ABA. As you say- the most vulnerable people need the most advocacy and support.
Do you know of Damon Kirsebom? He is a young man with severe autism. He made a video which is on youtube called "reframing severe autism". Thought you might be interested in it.
There are also other people with high support needs nonspeaking autism (what would be called profound autism) who also have online presence like blogs, facebook, etc, Rhema Russell, Philip Reyes, Ido Kedar, Danny Whitty, Gregory Tino, etc.
This is really important, thank you for saying what's needed to be said.
I don't disagree that profoundly autistic people need to be represented more, but all autistic people have a condition. That's why we're autistic. I can use social media but I'm not "just a little different."
Agreed. Just because I can speak and use social media doesn't mean I am functioning. My parents were told that despite me being 18, I reached the developmental milestones of barely a preteen. I'm not "just a little different"
@@games_bond7221 yeah, I live alone but I don't work, and I'm taking a break from school right now cause everyday things that others seem to handle just fine burned me out so bad I almost died.
@@LangkeeLongkee Yes. Despite me being gifted I am in a special school because I just can't function in a classroom. I was kicked out of 3 schools because of my symptoms. I'm only diagnosed Level 1 because of my IQ and ability to speak. Because my symptoms appear as severe as most Level 2 people
Yes. There's an autistic adult I was teaching to (I'm autistic too) who uses social media and speaks fluently. However he is still med to high support needs. He isnt just a little different. He needs a lot of support.
IQ of 157 here but still a support need level 2. Jobless from burnout for over two years and moved back in with my parents who accommodate half assed lol about to be 31 and I just wanted to add my experience here for anyone else reading the thread who feels bad about having similar experiences... it's alright. So many of us are experiencing burnout and more and we are in this together as much as we possibly can be. Every day is a day closer to autism acceptance, and thriving instead of just surviving. ♡
Well said. Unfortunately the most visible are those who have relatively mild differences, because they're the ones who 'integrate' into society. I too needed reminding of this!
Nobody has mild differences if there anywhere near the spectrum. Some people make others more uncomfortable than others do.
@@SmallSpoonBrigade Not sure where you're going with 'making others uncomfortable'
I have always assumed i may be autistic.
I am quite rattled you mentioned "hitting yourself in the head when things go wrong". I do that. Not a lot, ive gotten better about it.. but i will hit myself, sometimes in the head, when i get incredibly upset or sad or frustrated, especially and primarily with myself.
I am. astonished at how that one ohrase just opened my mind to the potential context as to WHY i ever developed that behaviour.
This is really important so thanks for talking about it! I think a lot of people don't fall neatly into any categories of autism but it can certainty be useful to have those types of distinctions especially in situations like this. For a long long time I couldn't communicate any concept inside my head so that nerotypicals understood and only ever mimiced them as a result which led to severe neglect of my needs and now that I've managed to develop ways to articulate things in a way people seen to understand and psychologists appreciate (even though it takes a lot of time and effort and is still pretty hit or miss but huge improvement anyhow!) I feel incredibly grateful being able to do it. The best thing I know is when someone else sees something I've written or made and it really resonates with them and in therapy I will often show my therapist things that other people have written or made taht really resonated with me. Social media is extremely overwhelming for me so I only have youtube and never post anything other then occational comments and have to limit the amout of time I spend on here as to not overwhelm myself to much. I also can't live completely alone and need help with things like grocery shopping as well as having regular check ins to make sure I'm doing alright. I struggle to keep up with chores but I really want to do it myself. I can't hold a job and can't currently study due to autistic burnout. I don't go outside alone, don't pay my own bills and I'm currently working on takingvthe trash out myself, but I still have some help with that too. This is where I'm at, where my support needs are right now. Sometimes I'm doing really good up until I'm not and then I need more help again. I do as much as I can and my point is just that I am also one of those people that don't neatly fit into any real category of autism. I'm sorry for rambing so much about myself, it's the only experience I really have.
These are also the people who are at highest risk of abuse and exploitation from support workers. I believe it is something like 70% of the IDD population that has experienced abuse at the hands of providers. This includes children many of whom are subjected to repeated instances of abuse in “behavioral” or autism schools. The stories I have heard and the things I have witnessed are horrific
From what you are saying, it sounds as if the phrase “profound autism“ is a way of saying “autism plus intellectual disability” - in other words, two conditions together. Can you please show me why or how it would make sense to call “autism plus intellectual disability” by that name “profound autism”? Since both you and I are autistic, maybe you can find some way to explain it in terms that would make sense to me. Why should I regard “autism plus intellectual disability” as actually being just one condition (“profound autism”) instead of two conditions happening together? After all, when a person is both blind and deaf, we don’t say that the deafness is part of the blindness - so why do you want us to say that the intellectual disability is part of the autism? Please help me understand why or how to believe your viewpoint.
This literally this 😅
Thank you!!!!
I see this said so little, this is so necessary to know.
My experience of mainstream understanding of autism and how it is represented always falls into extremes. I’m an autistic person and consistently face pushback from neurotypical professionals in all kinds of bureaucratic systems because I don’t present in a way that conforms to their preconception of autism. That isn’t to say that I’m “just a little weird”, but because I don’t present as being profoundly autistic, that means that I must be fine, and my struggles are demeaned or ignored.
I was diagnosed as an adult, and so in some ways have been socialised as a normal person. In that sense, I can pass for neurotypical, but at a high energy and emotional cost. That debt struggle is ignored, because in terms of objectives, I appear competent and capable of completing a task. I simply pay in arrears, not by failing to finish what I set out to achieve. Getting the support I deserve feels like an uphill battle that is beyond me, and that feels very isolating.
Suuuuch an important video!!! I hope many people see this and discuss it. Sooooo important! ❤
so much I would like to say. but I don't really know how. I will say I am old now I grew up with autism. but it was not called that in the early 60's I was labeled mildly retarted (Sorry for using the R-word, but that is how it was back then.) I never received any special help, in school, I kept up as best as I could. It was the phrase "that you will never amount to anything" that made me try 10 times hard than anyone just to try and keep up. I have days now when I look back and feel they may have been right..
I am glad there are people out there bringing this to the forefront and there will hopefully be a day when no one is left behind
Thank you very much for your advocacy on this. I always had an issue with the heavy handed application of the "autism is so-and-so's superpower" phrase in the last few years. I understand it, I understand the sentiment behind it, and sometimes it is. But the thinking that autism is just a mysterious adaptive benefit that nobody understands or makes space for, while maybe noble minded, is not really helpful. These people you are talking about are very real, and they are made vulnerable not only by their condition, but by their lack of visibility, gaps in the medical system, the expense their care costs their families, etc. I think you'll understand where I'm coming from. Thank you again.
I wish the diagnostic criteria was clearer. My son is level 2 and I don't know what that means for his life or his future. As a caretaker, it is scary to not know if he will live to be independent or not.
I'm actually thankful for this video. My cousin is profoundly autistic. I've always used the term "deep end of the autistic spectrum".
She's in her mid twenties and basically stopped developing intellectually when she was a toddler or so. Has to have 24/7 supervision, wear diapers, etc. Completely non verbal.
I haven't seen her in probably 20 years.
It's good to have a better term.
My son and I are definitely not on the same part of the spectrum.
Thank you for saying this. Support needs and abilities have a huge range. I'm autistic and I am a professional caregiver for other, more profoundly affected, people with autism. The other thing I would say is, especially for those who are profoundly disabled by the condition, is that a lot of times the autism lable is used to write off additional disabilities and social needs. Can ypu talk about that intersection?
Thank you. Thank you. Thank you.
I don’t disagree that profound autism needs attention, but studies show that people with level 1 and level 2 autism face more discrimination because your too normal to be autistic so you are responsible for your actions, but you are too autistic to be normal and are therefore ostracized by society. All levels of the spectrum should be paid attention to. All need accommodations regardless of how many accommodation and level of accommodation.
I agree with you that people with level 1 or 2 autism need more support and face too much discrimination. But People who have high support needs / diagnosed as level 3 have a different issue which can be just as damaging: the issue of low expectations.
Most are not given access to robust language-based AAC or to the support and therapy they need to develop the motor patterns they need to use it. Most are assumed to be incapable communicating using words because of their inability to use oral speech. And because their sometimes extreme difficulties controlling their bodies with purposeful intent means communicating using gesture and facial expression can also be impossible.
Damon Kirsebom talks about his experience of "severe autism" in his short youtube video: Reframing "Severe" Autism. Highly recommend looking at it if you haven't seen it already.
Tito Mukhopadyay wrote a book called Plankton Dreams in which he writes about how being a student in a special education classroom made him a philosopher. He had to come up with mental games to play to deal with the boredom.
Imagine being an intellectually curious person stuck in classes about how to identify if it's raining or sunny and other basic topics for years with no way to communicate that you want to learn about history or languages, environmental issues or different cultures, etc.
With people assuming that you have limited emotional life because of your flat affect when you are actually an incredibly sensitive and empathetic person (I guess as low support needs autistics, we can understand this experience pretty easily) who has extreme difficulty getting their body to perform the actions they want to do.
This lack of understanding and support to gain agency/autonomy over their own lives is still the case for many level 3 autistics.
The whole thing gets rather complicated, but when the DSM 5 criteria were adopted, they hit the people least able to participate in the discussion the hardest. Those that with profound autism were hit hard, but so were those with IQs high enough to allow extensive masking. In terms of the profound autistics, the communication challenges can make it hard to properly participate in assessment. About a third of those who were diagnosable with autistic disorder are diagnosable ASD. And the folks with AS were also hit rather hard.
We really need to remember that there are people at the margins that aren't being properly counted and supported. There's much more awareness of lower support needs and higher masking individuals. Hopefully as that continues to change the folks realizing that they're a part of the community will remember those that have more challenging combinations of traits and help out.
@@SmallSpoonBrigade Did you know that people with profound autism also mask? The severity of their apraxia / mind-body disconnect means that they can't pass to the extent that autistics with low support needs (who have much less severe apraxia / dyspraxia). But they suffer the same consequences: e.g. burnout.
Another question: have you listened to many of the nonspeaking autistics who would have been labelled with profound autism if they hadn't got support for their extreme challenges with purposeful movement (which make communication through speech alone impossible)?
These are people who were assessed as having IQ below 30 or labeled "mental age of a toddler" at 15/16 years old. They have extreme challenges controlling their bodies to perform actions they intend to perform (e.g. pointing to the option they intend to point to, might say yes when they mean no or vice versa), and inhibiting unintended (and often embarrassing/humiliating) actions, like grabbing food off a strangers' plate.
They're also often very curious about the world around them and, underneath the severe communication challenges and challenging behaviours, can sometimes be very deep thinkers. Many also have intense synesthetic experiences.
Damon Kirsebom is someone who would have been diagnosed with "profound autism" and he has some great short videos on youtube that are very worth watching.
(The difference between him and others with "profound autism" is that he got support for his severe apraxia to communicate by pointing to letters on letter board. He's now able to one-finger type on a keyboard, after years of practice getting the needed motor patterns into muscle memory).
Would also recommend others like Danny Whitty, Gregory Tino, Ido Kedar, Amy Sequenzia, Nico Boskovic, DJ Severese
There are nonverbal people online. Many of them are able to type and write.
This frustrates me so much. I constantly see people online being horrible about people who have any type of obvious autism and them going "I'm autistic and I can control myself". Lovely for you. They can't.
On a sweeter note, I work with different groups of people, and that often includes people with profound autism, and in real life, people tend to include them even when there's nothing in place to do so.
I think it’s important to remember autistim spectrum like a circle where these things can be random so in some areas lower support and some is higher and sometimes people can mask and sometimes they can’t. This might be over simple I think.
Autism is by definition a disability. We *all* have support needs, and I feel icky about giving part of the spectrum a separate label as if to say, "I'm not like those people over there. My autism is the good kind." We absolutely need to advocate for all autistic people, especially the ones who have trouble communicating and/or are less likely to be listened to. But I don't think we need to other a significant part of the community to do it. (Also, I don't put a lot of stock in IQ tests. They're unreliable, especially for neurodivergent people.)
Yes,
We can also listen to the many nonspeaking people with high support needs who would have been labeled with profound autism if they hadn't had the right therapies and support to communicate their thoughts and feelings in ways that are accessible the their nervous systems (e.g. in ways that put the least motor demand on the person: by pointing to the letters needed to communicate on a letterboard and gaining more independence from there).
As you mentioned, IQ tests are incredibly unreliable for autistic people. There are many autistic people with high support needs who were previously labeled with intellectual disabilities who have shared their experiences and thoughts, etc.. (Some of these people were assessed as having IQs as low as below 30, not because of lack of ability to learn but because they were not able to perform on the test)
People like:
Damon Kirsebom,
Ido Kedar,
Jordyn Zimmermann,
Danny Whitty,
Emma Zurcher-Long,
Tim Chan,
Ian Nordling,
Nico Boskovic,
Gregory Tino,
Tito Mukhopadhyay,
Lucy Blackman,
Philip Reyes,
Rhema Russell,
Zekwande Mathenjwa,
Amy Sequenzia,
DJ Savarese,
and many many more.
thank you for your videos. my goal is to learn more and be an advocate. i can sometimes get caught up in forgetting that what i see might not be the whole picture.
I have level 1 autism, my daughter was diagnosed level 3, although she is showing significant improvement in her communication ability! 💜
There IS a need for more awareness of high support needs autistic people. But calling them disordered, while calling low support needs autistic people just "slightly different" implies, that low support needs autistic people are not disordered, and therefor don't need support or accomodations. This could've been avoided if you had used the support-needs-based terminology, as I did here, because it leaves no ambiguity about autistic people needing support.
This all just feeds into people not taking low support needs autism seriously and misunderstanding it, leading to phrases like "you don't need that, you're doing fine!" (it may seem so because of masking) or "you're not autistic."
Even though autism can have some benefits, it BY DEFINITION also includes difficulties and struggles with things that are comparatively trivial for neurotypicals.
Hear, hear! I like how you ENJOY the differences!!! (Though many folks typically don’t get that either!)
Glad you are taking about this
1:00 um I disagree with the part where you said minimum communication and having an IQ below 50 and needing 24 hour supervision, I’ve seen some autistics out there that have minimum communication skills with a much higher IQ than 50 like in the 80s or even in the hundreds.
so that part of them having IQ below 50 is wrong in my opinion the ones that have a higher IQ still need sometimes 24 hour supervision sometimes less it just depends on them, but I’ve seen some autistics with all of what you said with higher IQs then 50 I’m not gonna doubt that there some out there with IQs below 50 but I have seen some autistics out there that have around 60 to 80 maybe even more IQ.
And in my opinion, I don’t really like the CDC. Most of what the CDC says, I don’t agree with, most of it I do, but most I don’t.
I agree with you.
Also, there are people who were assessed as having IQ of below 30, despite having no difficulty learning new concepts or understanding information or even despite having photographic memory. They got impossibly low scores on their IQ tests because they couldn't speak and also had no way at the time to communicate what they know through their bodies.
IQ is incredibly unreliable when it comes to autistic people and especially to those who can't speak or who can't communicate effectively with speech.
@@ramblyk1 Yeah the only reason IQ test even exist, is for the government to be able to decide where you belong in the world if you belong in a high paying job or very low paying job. Because with a higher level IQ, you have a higher chance of getting jobs in like Tech, medical or even something in the government
But sometimes I even believe that the whole reason IQ test even exist is to see if you were a threat to society or not because if you are like really smart, you could create things that the government might not like that the government wants control over
@@ramblyk1 Yeah the only reason IQ test’s even exist is for the government to be able to decide where you belong basically like if you have a high IQ you have a much higher chance of getting into like better schools, better jobs, etc.
I do half the time think that their other reason of having IQ test’s are for being able to learn who’s got the highest intelligence, so they can monitor you, because they would consider you a risk to society or a security risk and the other reason would be to use your brains for their own plans, and the only reason they don’t give autistics high IQs it’s because they know we are unlike other people that we have a more higher chance of going against them.
I went looking for non speaking autistic people (as well as a a survivors) sharing their experiences as early research for a screen play. It's something I'm interested in anyway but I really put my my nose to the ground because was specifically researching. But I didn't come up with a lot, the most vulnerable of us have the least voice, it's so important to listen and elevate those voices where we can
Here's some names of nonspeaking autistics who have shared their experiences in various media, both online and off line, in case your still looking, or are interested anyway:
-- Damon Kirsebom -- is on youtube, appears in the short video "LISTEN" made by communication first (LISTEN is also on youtube)
-- Emma Zurcher-Long -- has a blog, (not kept up to date anymore though) and features in the doco Unspoken
-- Danny Whitty -- has a website, was a guest interviewed on Dr Barry Prizant's podcast (Barry Prizant is the SLP who wrote Uniquely Human), was co-host of the Ocean and Us podcast on youtube,
-- Ian Nordling -- was a guest interviewed on Dr Barry Prizant's podcast (Barry Prizant is the SLP who wrote Uniquely Human)
-- DJ Savarese -- has a website, was featured in the documentary DEEJ
- Rhema Russell -- has a blog, appears in the short video "LISTEN" made by communication first (on youtube)
-- Hari Srinivasan
-- Ido Kedar -- has a blog, has written books, has videos on youtube
-- Gregory Tino -- has a blog, has written books, has a youtube channel
-- Tito Mukopadhyay -- written several books (a couple available for free download), videos of him on youtube, written article for neuroclastic
-- Philip Reyes -- Has blog, has written for neuroclastic
-- Nico Boskovic -- has a facebook page
.... I agree with you completely by the way. It's very important to listen to what nonspeaking autistics (those who'd be labeled profoundly autistic) share themselves and not only to the people who work with them or their family members.
YES YES YES YES! Thank you for saying this Kaelynn!
Even if it is a smaller segment of the spectrum, it is one that needs the most advocacy and support. It is also much harder to get empathy for the highly disordered amongst us.
Thank you for using your platform, KP!
I work in an "intensive support" classroom and this is absolutely true.
I'm more AuDHD, but I have a kiddo that is "Profound Autistic" (and deaf) being an "Occasional Parent" (or even a Parent at all) is hard.
I have the 'just a little bit' type when others see me, while my brother is 'profound' - nonverbal, 24 hr supervision etc. I absolutely agree we need more representation in media - positive rep! We are all human and some humans are more than a little bit different, and that's okay. I think if my brother's way of experiencing life was more widespread in media it would have been easier for my parents to figure out initially and people in general wouldn't think of him as 'lesser' and just different
I have "just a bit different" autism but that doesn't mean I'm not disabled. I very much dislike this false dichotomy.
Exactly! This video promotes misunderstanding autism, making people not take it seriously. Calling one extreme "disordered" and the other "slightly different" implies that the latter are not disordered and therefor don't need support. This is especially bad, because low support needs ("slightly different") autistic people usually mask well enough to seem neurotypical - if a bit awkward - from the outside.
This could have been avoided by talking about the different severity levels of autism in terms of support needs, leaving no doubt that "slightly different" autistic people do need support, by definition
I don't think she's saying that autistic people with different presentations aren't disabled. She's made other videos in the past advocating for viewing autism as a disability and not a "difference." I'll grant you the wording might give a different impression, and not everyone has seen those other videos.
But there is a concrete difference between autistic people who may be nonverbal, intellectually disabled, and/or need full-time care and people who can speak and who can function more-or-less independently (even with extra assistance or accommodations). More profoundly disabled autistic people *do* face additional challenges and *are* underrepresented in autism advocacy, and pointing that out doesn't take anything away from the rest of us.
@@gracewentworth7993 In my opinion, the only real difference is IQ.
Certainly we are still disabled. But you must be able to see the difference between our level of disability and the level of disability for those with profound autism, who don’t currently get to have a voice in this conversation.
It’s okay to recognize that others are much more disabled than we are and are fighting a different fight than we are.
While I agree with your point, I think it’s time to make space to talk about others. I also believe she is speaking from a societal acceptance perspective - “just a little different” does not mean “not disabled,” that terminology has been used for many disabilities that are socially acceptable, and she does not say we have no disabilities anywhere in this video (just fewer which is objectively true).
@@friedeyeball My problem is the lables that she uses.
On a good day, I can communicate fluently in my native language & dip in & out of other languages I've learned, I can express myself if I choose to, I can learn & do social rules & adapt them to the appropriate situation, and I can keep myself safe without supervision & without worrying about the lack of supervision. Those are the days I feel amazing about my future & my life & feel like I have control.
On a bad day, I stumble over my words, go mute, forget key signs in sign language, have difficulty remembering or following social rules, and feel anxious af about not having supervision even when I know logically I do not need that supervision. Those are the days pets are amazing.
I haven't thrown things at anyone in years 😊 doesn't mean I don't think about doing it, though
I find Level 2 gets left out on both ends.
It’s amazing how people just completely ignore profound autism.
Have you watched What's the Rule? Such good rep. I wish they made more because they literally call out Autism Speaks
as someone who is diagnosed as level 3 who is not classifiable as profound - in fact i am classified as twice exceptional rather than being classified as intellectually disabled - i have a foot in both of these categories it feels like. i have this experience where all sides of the convo shut me down basically any time i try to express anything ever; the mild autism prolific on social media often tries to overwrite my degree of disability and talk over the idea that someone with my needs might exist, and often try to claim that the concept of severity is ableist when its something i *need* acknowledged to be able to express my needs better. and then on the other hand, there are plenty of more mild autistics who will attack me for "appropriating profound autism" since i can type on social media on my own.
i never once have ever claimed to fall under "profound autism"; and i'm not going to lie about my diagnosis that i have held for years that i have no doubt lines up with the degree of my needs just because i get bombarded with aggression over it in spaces i am supposed to be aided in visibility with the claim of that aggression being to "protect" a category of people that i either belong to[when i am being accused of "appropriating" severe autism/level 3], or have never once claimed belonging to[profound autism, which is a specific category within level 3]. i am so tired of both sides that claim to want to support severe autistics - whether thats because they find "severe autism" dehumanizing[what? as someone who has severe physical disabilities too, if you find the diea of severe disability dehumanizing, you are ableist], or because they advocate that "mild autistics shouldn't talk for those who are severely autistic." i totally agree with that message! so please stop doing it[@ them, not at this correct video that just reminds me of these issues].
I have been talking about this for a few years now and never had the vocabulary to fully express how I feel about it, as I try not to use the "high" and "low functioning" terms. I am a "just a little different" kind of autistic person with many friends with profound autism and I love them so dearly.
Thank you for this. I have taught many autistic kids, most of them profoundly impacted. I'm so thankful we live in a time when AAC is as developed as it is, but we've got such a long way to go as a society in understanding and supporting ALL people.
Thank you! everyone deserves to be seen
THIS! Neurodivergent representation is about bringing attention and understanding to ALL experiences, especially those that our society may not readily accept or include.
"Profoundly autistic" is an ableist and unhelpful term. It includes both intellectually gifted but non-verbal autistic people and autistic people with intellectual disability. This serves neither group well. This term is being pushed by the Autism "Science" Foundation, a pseudo-science group who is still entrenched in ABA and the medical model of disability, and Autism Speaks which many of us see as an outright hate group. The term "profound" is harmful and scientifically inaccurate and unhelpful. The condition is nearly universally recognized -- even in medical literature -- as a heterogenic condition (which means many varying causes and effects). The categorization of "profound" does not reflect the desires of the autistic community and it is medically and scientifically inaccurate. It also "otherizes" the "good" kind of autism from the "bad" kind of autism. The wedge here being that ASF and Autism Speaks speaks for those who can't speak or are intellectually disabled, but not those of us who aren't. The wedge is designed to divide the community and to allow ASF and Autism Speaks to further exploit autistic people for profit/fundraising to line these people's pockets. Stop using the ableist and hateful term "profound". Here are some alternatives:
1. "Non-verbal autistic person"
2. "Autistic person with high support needs"
3. "Autistic person with intellectual disability"
4. "Autistic person with severe communication difficulties"
NAME THE THING THAT NEEDS THE SUPPORT AND STOP STROKING ALISON SINGER'S EGO!
^Exactly this.
I have a relative who has been called that before, and it just drives me up the wall. We're both autistic, though we each present differently. Despite that we each have a decent number of different cooccurring disabilities (most of mine being mental health problems, while his come from brain damage from a fever he caught as a baby), we are often pitted against and compared to each other.
Which is incredibly and grossly unfair, to say the least, for both of us, but especially for him.
Thank you so much for sharing this 😩
I like your way of specifying the "more difficult range" of the spectrum, I did like Aspergers to denote those of us who can generally manage in NT society but may need some accommodations. The "levels of autism" don't really always denote the reality of the spectrum where in some areas we manage fairly well but in other areas we have significant difficulty then there are areas that with time, education, assistance and practice we learn to operate in the NT world. Then there's the stuff that some of us never really get.
@@chriscohlmeyer4735 The thing that really gets me about this whole debate is that the support needs vary wildly between every individual. There are "level 1" autistic people that struggle with severe depression and anxiety and that need additional support for that. There are "level 3" autistic people with intellectual disability that thrive when given the right environment can have their other "supports" removed. (hint: the thing people thought was supportive, wasn't) -- WHY ARE WE STILL USING FLORECENT LIGHTING IN PLACES THAT ARE SUPPOSEDLY "high support" environments? Why do those same environments have cinder block construction that bounces sound around like crazy? Like that is table stakes folks. Use softer lighting. Dampen auditory sources.
Our condition is HIGHLY VARIED. The attempts to box people into a linear support paradigm just does not work. I don't understand why we can't just name the thing that needs the support.
Here's mine: "Autistic person with auditory processing difficulties, and extreme sensory sensitivity" -- For any doctors that read this... would you prefer seeing that on my chart or "profoundly autistic"? or "high-functioning autistic"? Which is more medically relevant to you as a clinician?
*mic drop*
@@Domineas Your descriptive of your autism makes a lot of sense to me and would be of greater help to doctors, teachers, HR, etc.
Mine: Autistic person with ADHD and dyslexia and a subclinical hint of OCD, auditory processing difficulty, communication difficulty, significant sensory issues to sound, light, vibrations and smells (developed into asthma) and I might as well toss in a high ACE (adverse childhood experiences) score to compound things.
I used to watch "fatheringautism" a lot. Abby is nonverbal autistic who needs 24 h supervision ❤
I appreciate you putting this reminder out. 🙏
this. my abnormal psych professor told us that 50% of those diagnosed with autism never develop fluent speech. that was really surprising to me, and it was difficult to reconcile that with the picture of autism i’d developed over my time on the internet.
You are doing amazing work! You are greatly appreciated 👍👍👏
I'm just a little different and I suppose to have Level 2 Autism. I live alone.😅 Support? I'm American. I don't think that's covered under my health insurance plan lol. It's sad...
I live in Oregon 😈🌲.
Love this, Kaelynn!
While your point is incredibly valuable, we really need to stop including IQ as part of the Autistic experience. Autistic individuals run the entire range of IQ and those with profound Autism always have a secondary condition that directly affects IQ and is not Autism by itself.
Reality is, nearly no one has just Autism and the combeites often have a more direct effect on functionality than the Autism would on it's own.
I thought you were going to say it's because the IQ test is insanely inaccurate, only designed around white male brains, and because the sample size was only like 12 dudes probably, just like how the BMI is, yet we still use them both as if they both aren't basically just the Myers Briggs of Science😂
So many reason to hate IQ, but no fr her video was good and very helpful. Language around medical disorders is always going to change with time, so maybe we will have another better tool than the IQ thing soon.
@@heehoopeanut420 The IQ tests used for individuals with low verbal skills do not have the same failings as the tests you're referring to. Language based tests always have cultural bias baked into them.
As for the more traditional tests, they are significantly improved from the versions you're referring to. And the ASVAB has always been a better measure as well.
There does seem to be a correlation between level 3 and low IQ. Maybe not in every case, but if we separate the symptoms of autistic people too much we forget what autism is. For example, dyspraxia (like low IQ) ranges on the spectrum and is considered a separate condition. And yet it’s inextricably linked to autism. I’m open to being proven wrong though.
@@heehoopeanut420I agree with the concept of IQ tests being problematic, but there's no such thing as a "white male brain". 💀
@@gigahorse1475 the correlation is the combeites not the IQ directly. Which is the point of my post. Correlation is not causality. Your response actually drives home how serious the misinformation on this is.
Thank you @Kaelynnism . I’m not 1 or Profound? but I understood 😊. It makes me think of glasses. They’re different for different vision. 🤓 🦯 👀. I can’t live alone or do many things without help. That is okay 😊 It’s important to have help and communication help some don’t need.
You do great work and have different needs. Others have more needs than me. All of us deserve respect, help and to be happy and healthy! 😊
I like that this video makes everyone know more people need some more help and that is not a bad thing. 😊.
Also, it is like glasses - they have to be in different strengths or they won’t help people see good. That’s like Autism - if you don’t have the strong enough glasses you need, it would mean not having the strong help you need.
(Or if you needed small strength glasses 👓 😊)
I hope my comment made sense and that others understand their value and worth no matter how much or little help they need. 🔍 🟰 ♾️ 😃
I agree. With the importance of knowing about them. I like the idea. These are the people most vulnerable and they deserve our help. Do you have a "plan" (loose idea to Doctorate thesis) of how to go about this?
I personally have held the loose idea that as we are able to explore the needs of those requiring the least interventions/assistance we can normalize this and those with a greater need can start to self advocate (or been more easily advocated for).
The profound group will be the hardest as we're still scratching the surface. I agree this is absolutely the goal. They need help. But I want to know if you have a different proposal so we can see how to take advantage of the strengths of both ideas
I think it would be more helpful to refer to them as "profoundly disabled" or "high support needs" rather than "profoundly autistic." I'm just as autistic as a high support needs autistic person, I'm just not as disabled because I have high general intelligence. Can we really be certain that the intellectual disability is coming from autism or whether it's simply co-occurring with autism? People with low IQ tend to be profoundly disabled, whether they're autistic or not. That doesn't mean it's the autism bringing about that level of disability, though it's likely exacerbating it.
Also, I agree that these people need more visibility and recognition and to be humanized. But you don't need to throw low support needs autistic people under the bus to do it. I'm not "just a bit different." I am disabled. I have support needs. Painting us as "just a bit quirky" undermines the efforts we're making towards greater societal acceptance. This attitude of "you're the okay kind of autistic because you can act neurotypical" is the problem that we're trying to push back against. We're trying to create acceptance for autism, not by saying "we're just like you" but by saying, "actually, we're not like you, *and that needs to be okay*." That kind of advocacy benefits higher support needs autistics as well.
... On top of this, a lot of high and very high support needs autistics are actually just as intelligent as those of us with level 1 or 2 autism diagnoses.
Did you know that there are autistics who were assessed as having IQ below 30 who actually don't have any impairment in learning new concepts or learning and understanding information and problem solving (at least the mental side). Some can even be gifted in these areas and/or have photographic memories. But they're not able to communicate what they know to the tester. Unless they've had specific therapy to get better volitional control over their bodies in order to communicate in the least motor-taxing way -- .e.g. by one finger pointing to letters of the alphabet -- they can't communicate what they know, even with gesture or facial expression.
These people can have 24-hour-support needs even though they may be gifted at the kind of learning they do inside their heads.
Damon Kirsebom, a nonspeaking high support needs autistic man made an excellent short youtube video called Reframing "severe" Autism about his experiences which is very worth watching (he points out that his experiences are very similar to many other nonspeaking autistics)
If you or I (autistics with lower support needs) are just as autistic as an autist with high support needs, and it's just that we have higher intelligence, why is it that I know so many people who have much higher support needs than me who are also much more intelligent than me? (I'm a speaking autistic with medium support needs who's highly educated with multiple university degrees)
Autistics with very high support needs, who would be labeled "profoundly autistic" (a horribly degrading label) (e.g. needing help most activities of daily living) are often incredibly wise and some are also intellectually gifted.
Do you know what one of the main differences between autistics with high support needs and low support needs? Those with high support needs have extreme difficulties controlling their bodies with intent. E.g. for many, they often can't get the words out that they want to say, but random phrases that seem nonsensical to people around them come out instead.
You can call the severe apraxia a comorbid condition if you want but most nonspeaking autistics consider it a core part of their autism and I agree. I have movement issues as part of my autism too (I guess most autistics do) but mine are much less severe than someone who's nonspeaking and needs support to develop motor patterns to use a letter board to communicate their depth of thought and feeling.
If you want to learn more from autistics with high support needs who are nonspeaking, there are many to hear from. Damon Kirsebom's channel on youtube is a great place to start.
@@ramblyk1 to answer your question: because autism is a spectrum. Autism comes with varying degrees of disability and comorbidities. There are different traits that we each have more or less of, but if we have a certain combination of them above a certain threshold, then we're autistic. Period. You're autistic or you're not autistic. There is not more or less autistic. That's not what it means to be a spectrum.
I'm not "less autistic" just because I have only mild dyspraxia and situational mutism compared to someone who is nonverbal and can barely control their body. I am fully autistic, and they are fully autistic, and their autism disables them significantly more than my autism disables me, because the degree to which autism is disabling is inherently variable, as is the case for many other disabilities.
Disabilities can vary in severity, even within the same disability. People with Parkinson's or cerebral palsy can have varying levels of disability, but being less disabled by the condition doesn't mean they have "less" of the condition. It just means they're less disabled by it.
I'm not saying the differences in severity of impairment are unimportant distinctions to be made. I'm just saying, framing a lesser degree of impairment as being "less of the condition" is fundamentally wrong, and it ends up very invalidating for those who are disabled but don't have maximum support needs. It leads people to think we don't have real disabilities or real support needs, because we're only "a little bit autistic." As if our only struggle is social awkwardness, when that is not at all the case.
If we were not sufficiently disabled to require support, we would not qualify for a diagnosis. That's what people need to understand. There's no such thing as mild autism. All autism is severe enough to require support. Sometimes it requires a lot of support, and sometimes only a little, but it is always a disability.
@@itisdevonly Do people with cerebral palsy talk about having mild or severe cerebral palsy? or mild or severe Parkinsons? I know I've heard people talk about it that way in the past.
Personally I don't say "mild autism" and I defintely don't say severe or profound autism, but that is more because of the politics around those labels and because they are inappropriate in my social circles than that they are inherently incorrect or logically inconsistent.
I think we basically agree. I completely agree that all autistics need support and accommodations. Having low support needs is still having support needs. But I don't think that the wording, saying or not saying "mild autism" or "severe autism", is necessarily what leads people to think that people with low support needs don't need support, that they're just a bit "quirky". Or that people with high support needs are only capable of the most menial activities and need to be spoken for (oppressively severe low expectations).
People with ableist mindsets will continue to be ableist even if we get them to change what words they use. It's already been happening for a couple of years. They're putting neurodiversity symbols and language on the ABA brochures to make it look neurodivergent-friendly.
... Also, going back to your first comment, where you said
We're trying to create acceptance for autism, not by saying "we're just like you" but by saying, "actually, we're not like you, *and that needs to be okay*."
I think, maybe for people with high support needs, it could be the other way round. These are often people who grew up being thought of as having no inner life, no concept of right or wrong, no sense of embarrassment if they've done something socially inappropriate, no real emotions or affection for others (the opposite of all these is true, they tend to have all of these in abundance). So they might want to emphasise the ways they are actually similar to everyone else.
Our advocacy needs seem to be quite different in some ways. That's why I hope autistic advocates with low support needs will listen more to nonspeakers. Things have definitely been improving on this front over the last couple of years.
You don't think it's kind of dismissive to the struggles we have gone through to say it like that? I agree level 2 ans 3 get no representation and I even see level 1 try to claim stuff that is symptomatic for them isn't a thing but that being said I still have a disorder that required assistance and if I didn't have the assistance I'd likely be more in the category of "profound" if I didn't have speech therapy I would not be fluent in my native tongue. I received the help and support that unfortunately not everyone has access to but that doesn't mean I didn't require it and don't have a disorder. I was fortunate enough to be given the skills to maintain mine but that doesn't mean it's not a disorder that could control my life (and has many times) when I lose routines due to other life tragedies.
I understand the point to a degree because even with early intervention and support not every autistic person will end up like me but I truly don't understand why we have to diminish one categories struggles to bring awareness to another's.
It's apples and oranges. They absolutely need more representation and are not a small percentage but they are also the minority so I think keeping all of us in mind makes sense.
There is a reason we are categorized and it's because we have different support needs. It's so they can have the support they need and so that we also only take as much as we need. The comparison is actually so unnecessary and I see them as part of my community.
It's also why I find it interesting some people are against level 1,2 and 3 being labels when it was designed to designate support needs and separate us "just a little different" people from people with higher support needs already. It's literally meant to address that already. It's super dismissive to say "just a little different" too. This is a spectrum disorder. My level 1 could be "easier" and less quirky than someone else's. You can't really put a blanket on the struggles we face like that.
I am also not sure how we can justify calling 23% of people diagnosed with a disorder as the people who *actually* have that disorder. Why are the rest of us diagnosed with a disorder then? Is cancer not cancer if it has a higher survival rate than a different kind of cancer? Is it suddenly not a disease at that point? And considering the majority of the people with the disorder fall into the category you said are "just a little different and not the autism that is a disorder" wouldn't it make more sense to claim level 1 is the ones who actually have autism then by your reasoning? That's obviously not the case! We all have the same disorder. Let's stop differentiating ourselves from them and start inviting them into the community so they can have that representation! This comes off like we think we are better than them or something imo. Like "oh no I don't have THAT version of autism. I have the good non disordered one 💅" I think we need to include them not exclude them!!! We all have a disorder. They just have higher needs. Just like someone who has cancer might need full blown chemo and someone else may only need a simple surgery.
It's definitely a chicken or egg thing for a lot of us too. I started out with pretty high support needs. I could not verbally communicate early in life. I got early intervention though which we know is the most effective way of helping people manage the disorder for life and now I'm level 1. If that didn't happen I probably wouldn't be level 1 right now. It's super dismissive to claim I don't have a disorder when I went through that and still have to work very hard to keep routines in place or I will crumble. A lot of level 1s crumble and end up needing suppoer again later in life for a multitude of reasons too. Many of us have other comorbidities that make it challenging to stay in routines. I am functional and capable enough to create routines and systems to help myself stay regulated, however, if I start to fall out of them it's like a whole domino affect on my life. If I don't get it under control I need support again. I start losing the ability to take care of myself and forget how to create the routines or implement the systems I had in place prior. It's a cyclic problem due to my disorder. Please don't be so dismissive.
Ngl you seem like you have a lot of social support and you might be blind to the fact that you do still use support systems NT people don't necessarily rely on. I live alone and don't have access to this and trust me it shows. I think you are blinded to how much of a disorder it still is for us because you are lucky to have that. Not all of us have people to help us stay in check or be understanding through meltdowns and such.
My kid is high functioning, but because she can't read people, she gets severely abused.
Yet, no abuse shelter will take her and no group home for autistic adults will take her either.
She doesn't know how to keep herself safe, and when she has a very challenging situation she can't ask for help.
Thank you for this video!
I felt strange because I realised that I literally overlap both.
The same with me. As the video says, autism is a SPECTRUM, & we all experience it differently.
Since I don't know you, and only have your one sentence to go off, don't take this too seriously, but it sounds like you might be level 1 autistic, or with low support needs (or "slightly different"...), because BY DEFINITION autistic people need support for some things, no matter the severity
EDIT: It's important to me to make clear that calling low support needs autistic people just "slightly different" is hugely detrimental for them in my opinion, because it implies that they don't need support or accomodations for their autism (which by definition would mean an absence of autism). This will lead employers and such to not sufficiently provide accommodations, because they think those aren't needed since...
"You're not disordered, just a bit different."
I’m the same way. I can speak both English and Spanish fluently and even make video essays, but when I need something, it usually comes out like, “MOMMY, I’M HUNGRY! PLEASE FEED ME!”
This is why I don’t believe in the existence of levels of autism. You can have traits from both “ends of the spectrum” you’re just autistic. You can have high support needs and less support needs but you’re not mildly or profoundly autistic
@@rowan404same. I can communicate in many languages but sometimes the only ones I can use are signed languages, if I can use any at all lmao
I'm not "just a little different" and I actually get more along with people you call "profoundly autistic". And if you are diagnosed, you are seen as "disordered", so I don't know what you're on about. I do agree we shouldn't forget about our peers that struggle the most with autonomy but I don't think the way you are doing it is any better than having parents speaking for us.
I agree. We need to do more listening to people with high support needs themselves, less talking over or talking for.
I think the biggest issue lies in neurotypical people making movies and not making it clear that autism is a spectrum and other neurotypical people seeing those movies and thinking autism is "this" and that's it. People treated me like I was intelligent (because I am) before knowing I was autistic and after finding out, they baby me and treat me like I can't function for myself. Unfortunately, people are already misinformed about autism and I think the biggest challenge is representing the full spectrum while also making it clear that autism also has a spectrum of IQ
Did you know that there are autistics who were assessed as having IQ below 30 who actually don't have any impairment in learning new concepts or learning and understanding information and problem solving (at least the mental side, not the application). Some can even be gifted in these areas and/or have photographic memories. But they're not able to communicate what they know to the tester. Unless they've had specific therapy to get better volitional control over their bodies in order to communicate in the least motor-taxing way -- by one finger pointing to letters on an alphabet grid -- they can't communicate what they know, even with gesture or facial expression.
These people can have 24-hour-support needs even though they may be gifted at the kind of learning they do inside their heads.
Damon Kirsebom, a nonspeaking high support needs autistic guy has made a short youtube video called Reframing "severe" Autism about his experiences (which he points out are very similar to many other nonspeaking autistics) In case you're interested in learning more about high support needs autism.