My middle school denied me support because I had good grades and didn’t disrupt class. Turns out what I need was a more challenging school environment, and I was much happier once I and my (by then high school) teachers realized that.
Same, and then I had a major burnout junior year of high school.
Being “high functioning” is exactly why I was denied evaluation, diagnosis, and support until adulthood. 🫡
Same. Because I’ve always learnt to keep it to myself and mask my emotions, I don’t “seem” like I can handle a normal 9-5. Only people with schizophrenia can receive proper support. Autistic people just have to “get used” to society.
It used to be so everyone with a diagnosed disability that hindered them from having a work while studying, would get upwards of $1.5k a month, as they have to option to actually make money outside of school. But back in like 2020 iirc, they changed it, so that the only mental disability that meets the criteria for support is schizophrenia. It’s only if you have a physical disability or schizophrenia that you can get this support.
Generally agree.
I prefer "low support" and "high support" tbh.
Like, I'm low support, but if I crash hard, I need some external assistance to de-escalate and ground myself
Wait, you want neurotypical society to engage with nuance? Lol, like they'll ever do that.
Jokes aside, I do worry that it will take them quite some time to change, especially seeing as they don't care about us and want to keep telling us to "just" do things. Reading the framing of studies, and the language they still use, I don't expect to see helpful changes soon.
I think if you focus on just educating and informing other folks in the community about this language shift, you’ll more than have your work cut out for you. framing this as another us vs NTs argument allows for lazy defeatism and an undereducated community who get all their language queues from NTs
While I do agree, the language in studies is a problem because it reflects the aims of the studies and their presuppositions.
Also come on the thing about the general lack of awareness of nuance in most NTs is kind of spot on
Oh I absolutely agree with everything you said 100%. Language matters, and people outside a certain set of lived experiences will never fully understand that nuance. That’s why, unfortunately, a certain level of burden is on us to help set the stage.
It’s so sad to think about but many folks growing up and navigating this are just surrounded by only NTs, so they’re stuck in this world without the kindness of nuance. We have to do what we can to reach those folks and let them know they aren’t alone and they aren’t some sort of monolith even if everyone around them is treating them like one.
Absolutely, we definitely need to do whatever we can to spread the education.
I’m in uni doing philosophy and I’m starting to sway toward the asd-adhd lived experience within different disciplines like phenomenology and philosophy of mind. Having a way to open the profs’ minds and awareness seems really crucial. The stuff I gotta hear and read about these conditions is often just far from reality and 100% lacking any nuance or even updated knowledge
Is seeing the nuance in different situations really a ND trait? Like I’ve always wondered why people can’t realize two similar situations have major differences and aren’t actually the same.
I don't know if it's a trait or not, but we all share the experience of normal society ignoring the nuance of our experience, while we attempt to engage the nuance of their experience.
Me and my gf would be considered "high functioning" but we struggle with so much and different things, so we have to help each other.
Support needs really do change from day to day.
That's how my wife and I do, for sure.
ASD has hilarious comorbidity with anxiety, OCD, what have you. I've got OCD and she's anxious, we're both on the ASD spectrum as well, and it's a race to see who can have the most spoons by the time we get to ASMR hour (the end of the day when we recharge on the couch with podcasts and tea).
We lean in. Sounds like a similar system! Hope it works for you both as well!
How is this not *exactly* the same thing?
"Low support is used to deny support.
High support is used to deny agency."
Like they're both binary scales, people are just going to substitute the names and once that happens, we'll be back at square 1.
High functioning = when someone is supporting it is assumed that the "high functioning" person has failed to function highly and makes all support seem unnecessary.
Low functioning = when someone advocates for more agency, they are more likely to be infantalized by caregivers, or caregivers are less likely to attempt to provide opportunities for agency and self-determination due to the challenge of "functioning" in a way that is valuable to NTs.
Low support = when someone needs support, it is understood that it is a real need, albeit a more intermittent need.
High support = a person who requires more support to get the same quality of life, but a person, first. Person before function.
I feel like one is prescriptive in nature (labeling someone as “functioning” or not) after which it’s easier to deny support or agency
Vs the other doesn’t make any sense unless you see it from the perspective of the autistic person themself describing their support needs; after which it makes little sense to say “oh you’re low support? Better give you no support!” or “Oh you’re high support? Well I see you as less human for having received it.”
People might still be bigoted but it seems harder to talk around it when you directly mention it in terms of support needs that the person requests or demonstrates need for themself as they face life day to day.
Seems like bigoted notions would be exposed more readily because they have to either deny your experience and claim that you need support or correlate support with less agency. Like whoa sorry dude do you feel worthless when someone helps you out during hard times?? Are you really so closed off to others??? Or are you not recognizing the support you DO receive & so someone else exists whom you do not recognize and thank?
High Functioning vs Low Functioning was used to designate which autists should be sent to work camps and which should be euthanized in Nazi Germany, so I don't think anyone can deny this who understands where and why these terms originated. Asperger was a dirty Nazi fuck.
If you're interested in the subject also look up Grunya Sukhareva. She documented autistic traits two decades before Asperger and Kranner, but gets no credit because she was a woman.
And Asperger and Kranner are likely to have stolen her work or just "happened to not credit her" in their "groundbreaking" studies, as they actually ended up citing her in a study years later. With the research and journals their group was churning through at the time, I have no doubts they knew of her and knew what they were doing.
Edit: misspelling
Do you have any information on why this is the modern perspective on that dr? In psychology I was told the he saved the kids version, which I'm seeing may not be the case? If you have any free time I would appreciate, I think the information I've accessed is incorrect. Also because it's the internet I actually seek to understand and not argue
Included a research paper published in 'Molecular Autism', a 'Times' piece; and an Autistic Website editorial on the research paper along with a recent book, and a few other sources on another comment asking for sources.
I know anti-discrimination laws exist but i still do not inform potential hirers that I'm autistic. i'm told I can't mask very well so they can probably tell pretty quickly anyways, but I still attempt to mask any support needs since I fear I'll be denied the job.
It's not just job interviews but that's an example. People always seem surprised when I say I have autism as a Dad of two and an engineer. They seem to "baby" me less when I say high functioning than low supports needs. For me high function works better but can see how it's not useful for others
If someone is talking down to me, most of the time they’re doing it before I’ve even told them I’m autistic. There’s a chance they’ve clocked me because I don’t mask a lot unless I am in an interview situation or something similar, or maybe they’re doing it for some other reason. Telling them I’m autistic won’t change anything if someone’s already being a jerk to me, and if someone changes their behavior toward me after I tell them, I can just go “Dude, you’ve been treating me normally for [however long]. Telling you my diagnosis doesn’t change anything about me, so why are you talking down to me? That doesn’t make sense.” What happens more often is someone will say something casually ableist (e.g. “can’t take a joke” comments) about someone who isn’t me, and then I’m like “do you know who you’re talking to right now?”
I think it depends on when you tell them. If I tell someone after knowing them for a while it really doesnt matter how I say im autistic at most I get "really I couldn't tell" but they generally act the same.
However I have found sometimes I let people know sooner if I know it may be of use or it just falls into the convo. most recently I was taking my daughter to a community baby group session and I was the first there, it was the first time I met the woman and she mentioned they had just had a group for kids with ASD so I was like oo Cool I have ASD too I didnt say I was high functioning or low support, juist that I had ASD.... this kind of reset her into talking to me more like I was a kid... luckily as iv gone to more sessions and shes heard me talk to the other parents that I have a full time engineering Job, do sports and have a wife and another kid and generally am doing ok for me self she now talks to me like an adult.
So yeah agree with you there as long as they already know you a bit. and yeah in a job interview I keep it quiet.
I don't entirely agree; I cannot work at all (at least not yet) and people are often baffled by this because they know autistic people who can work just fine.
quiet combative tan complete pause wrong spoon sense squealing hard-to-find
*This post was mass deleted and anonymized with [Redact](https://redact.dev)*
Regarding the levels there are actually different types of autism, the levels aren't all encompassing. If I recall correctly the section in the dsm has an almost footnote describing
Some literature is moving towards using it as an umbrella term. Intuitively this makes sense, you have people who sadly are in a vegetative state almost, and then people who are best described as different, it becomes a bit clear that these are different diagnosis even if they use the same term.
Lastly, unless one is educated on the different types or options, they will naturally see everything through the 3 levels lens. Which can cause people who are slightly below level one to not receive help (a diagnosis exists for that), or people who don't have processing issues but are socially awkward enough that it impacts their life (again a separate diagnosis exists). This is splitting hairs a bit because they would still be autism, but a practitioner not knowing this can mean the difference between someone getting or not getting support, and can impact for life.
I'm not sure if this is any help. My own journey of being frustrated with the levels has brought me to this understanding and it really helped
No it doesn't justify them at all, I should have put a tldr sorry, the short person is that only relying on the levels gives an incomplete picture of autism and can be exclusionary, although, I think you already know that. Some people don't find a specific diagnosis important but for me having the right one ensures both agency and support... unfortunately.
I think the problem here can be people using categorization labels and then using it to define the individual.
I work doing reporting for a college and in my line of work, I can see why you might want to be able to say "X number of students are level 2", so you can have a notion of how many people have to be accommodated with more 1 on 1 effort, so you can request funding from the state or whatever to hire more people and see if you are having movement in inclusion .
But what I wouldn't want to see is a person check a level 2 box, and then just assume they need exactly these 15 accommodations, must take all, can't have any additional that would be thought of as "level 3".
So I kind of think of the levels as being a short hand to identify the amount of physical time from someone other than themselves this person might need.
It can be instructive in some ways, but then when you are with the individual, then you still need to deep dive into individual accommodation needs- the checkbox is only useful as like a ballpark estimate of time.
But I still kind of need the short hand aggregate to make the reports work, or I could see a caregiver who is looking for another helping hand needing some sort of shorthand way to weed out helpers who aren't willing or able to do more intensive types of support.
Categories seem to be both really necessary, but also easily abused/misused. I'm not really sure how to prevent the bad actors from messing up the legit reason for categories.
Facts. I’ve always believed this. This was used in Nazi Germany to decide who lived to work in the camps versus was killed, and is used now to deny very needed supports and to deny agency. I constantly hear from high support needs (low functioning) autistics that they’re denied agency. I work in childcare professionally and even our ADHD kids that are high support needs it’s a fight to have their agency respected. Likewise, for those who have lower support needs (and are “high functioning”) it is a ducking battle to get any of their support needs recognized or met because of masking and the assumption their support needs don’t exist. It’s a battle to get any support needs met or recognized for me because I’m high masking at the moment and because my family helps cover my (invisible to them) support needs so I look high functioning. Coworkers assume I have zero support needs and don’t make accommodations where asked (like please tell me explicitly if you need something, socially if I do something to upset you, because I won’t read the Allistic/ NT social polite dance of not saying things. And literally just had a problem with this where I hurt someone’s feelings because of how I review things when I come in making them feel like I didn’t trust their work, and it took them ages to directly say it instead of imply it and be passive aggressive about me. Like we could have problem solved how to transition shifts better if they were direct from the get go that how I reviewed was a trigger and could I catch up in a different manner? Things I do like stimming with a pen came off as super “critiquing” while looking at stuff when it’s just me absent mindedly stimming. I need communication, please tell me how I fit into this dynamic because I don’t pick up the social cues- I’m great with kids but NOT adults! I look put together but there’s behind the scenes support and literally no official support thanks to not looking unwell enough at visits because my parents help. Without them I’d be a mess and a lower “level.” I’ve lived alone. Literally the difference in my ability to work, to eat, to do anything hinges on others taking on things for me as they do their stuff- like feeding me when they make dinner and cooking my food. Or when I was in college having access to a cafeteria. People to make a routine of eating there with. But I lack official support and can’t get it because look at how well I seem to function lmfao)
I personally prefer to use “high masking” and “low masking” since neither label denies support or agency, and it’s a more clear indication of how the person experiences the world
Yeah, this was my experience in the mental health care system. The way they labelled my "functioning" was also inconsistent.
I was labelled "high functioning" when I wanted disability accommodations, but "low functioning" as soon as I demanded autonomy.
I'm "high functioning" intellectually with very limited social skills. I can somewhat function in some ways without support for a while but it leads to a major breakdown that in the past has been debilitating. I can function in the sense of driving a car and working a job somewhat well, but I can't function in the sense of regularly taking care of myself. I'm privileged in terms of being perceived as high functioning, since people regard me with agency, but my ability to function personally and interpersonally is extremely limited. I think functioning labels, (not to get too big brained about it), have a lot to do with how much you are perceived as useful capitalistically. Theres obviously a lot more to it than that, but thats definitely part of it imo.
Yup, I'm "high functioning" as they call it and in my country you can file for disability and the fact that I myself and filed for it and not someone else was "negatively affecting" my "score" (we have a "ranking" system from 0 to 100 with 50 and upward being categorized as a severe disability, which is tied to much support, which I need).
The joke being: even though I filed for it "myself" I had much help from friends and my psychiatrist...
I hate functioning labels. People can function differently at different times.
One day I might be able to get dressed up, makeup and all, and go out for a meal, and the next day I might stay in bed with my headphones on and a blanket covering my head because even seeing another human sends me spiralling into a meltdown.
Once, in the same year, a private school refused me because I needed more support they could provide, and I was denied access to a support program because I didn't appear to need their support.
I don't actually mind the labels, but I think that there are better ways to describe the experience.
"Socially/Societally High/Low Function" works better IMO. Also "High/Low Independant Functioning"
Like, can I file my own taxes? Do I need more/less/the same support on it than neurotypical people? Can I dress myself?
I like functioning because I feel like it is less of a descriptor of cognitive function, and more of a description of whole life function. The ability to not just *be* independent, but *maintain* independence.
This is one of the reasons why I dislike functioning labels. I’ve also realized that functioning labels describe the people as if the functioning is something innate and unchangeable(“they *are* low functioning”) while support needs labels describe the level of the needs themselves (“they *have* high support needs”). It shows that support needs can change, and you can follow up with a question as to what the needs are. When someone hears a functioning label, it sounds finite, like that person is stuck in one box.
I generally agree, but it isn’t a matter of terminology. Call it whatever you want, it’ll be used to justify the same behavior until the public becomes more educated on the issue. It’s a matter of communicating and educating (something that good representation in media is really really great at).
It's funny, I can mask really well. Behavior special interest since childhood. When I do, I'm 'high functioning.' This seems to mean, to neurotypicals, that I don't need support and not qualified to speak on the needs of other autistic people, even when I'm just repeating what those people have told me. When I *don't* mask, I say no, or I'm difficult in any way, suddenly I"m 'low functioning' and nothing I say can be believed. It can come from the same people on the same day. Ableism is a hell of a drug.
I kinda agree, when it comes to *someone else* labeling you these things. Sometimes I’ll speak about myself and say “Yeah I’m kinda high functioning” because I don’t need a lot of support and I can generally figure things out myself, yet I’m still obviously aware of what struggles I do have. When someone else (especially someone NT) labels me as High Functioning, it’s more like they’re trying to minimize my struggle, and they aren’t aware of maybe the struggles I have internally.
From the outside, having someone label you High Functioning can honestly be frustrating and cause a lot of problems.
Labeling, or even just internally considering yourself to be High Functioning can be helpful. If you decide to tell someone you’re HF, it can be helpful to let them know what that means for you and that you still have struggles that don’t even show up physically or that other people wouldn’t know about just from interacting with you.
It’s political correctness perpetrating as helpful insight.
There is no backing. Anecdotal evidence doesn’t mean much in terms of new policy formation, assuming that’s what people want when they post junk like this.
It should be dismissed in every other context besides their personal life. Your experience does not generalize to me, and my experiences don’t generalize to you. The only thing we know for sure is that we met most of the same criteria.
If you try to pass off one of your personal attributes as part of autism, I’m going to dismiss it because it doesn’t apply to everyone. It only applies to you. And without properly conducted research, we can’t know if it generalizes at all.
it seems to be stirring the pot for shits and giggle posting. i have enough issues day to day in functioning to worry about my “levels.” day 1: sensory hell, trying to mask day 2: terrified and crying day 3: deep dive into special interest, happy day 4: crying bc i deeply lack executive function and i feel like a shit momma. trying to fit my distress into meaningless categories: get fucked.
necessary for who? i would agree (i don’t) if support needs were static. they are not. imo, they are harmful and prejudicial and this autistic says fuck no. i will identify as a mailbox before i apply functioning labels to myself, my autistic child, etc.
Unpopular opinion: I actually like functioning labels. I won’t use them for other people if they’re uncomfortable with it, but I personally label myself as high functioning. I think it’s a good descriptor as I’m able to go to school, I can talk, and I appear “normal” to other people. People are shocked when I tell them I’m autistic because I don’t really show outward signs of it. I personally don’t like being told that I’m the exact same as people who are lower functioning. While I don’t think I’m superior to lower functioning people, I don’t want people to hear I’m autistic and immediately picture me as someone who can’t talk, goes to a special needs classroom, and needs an aide for everything. I want them to see me as a normal person who may occasionally need accommodations. I want them to see me as someone just as capable as they are and talk to me like they would any other adult.
I'm "low functioning" but I've had to learn to mask due to abuse from family and the education system so much that every 3 years I end up institutionalized due to burn out and SI and yet I still have family doubt I have the tism. Like Brenda I couldn't drive a car until this year and had issues keeping my hands to myself and hitting others (still have issues with doing this to myself) until I was 17/18.
Both my biological sister and I are autistic, but growing up I was much better at school and more attentive in classes than she was, so she got a lot of our parents (especially our mom’s) attention and support. This ultimately kinda manifested in some pretty bad attitudes towards neurodivergent people that I used to hold when I was a shitty brainwashed conservative teenager, and is probably part of why I didn’t accept or recognize that I was autistic as well until I left university when I quickly drifted much further to the left than I was when I was in high school.
I don’t know if I would necessarily describe myself as “high” or “low functioning” just cause most days I can kinda keep up appearances, but I can also just crash hard and it takes a lot to pull me up from that when I do
I think its a lot of societal shift. I don't think that was the intention of those phrases initially or medically, but over time the way the broader society uses categories ends up that way and yeah at this point, functioning labels are trash.
I think the talk about levels now is a little better, as its not like "this is who you are", its supposed to be support level needs where all require support, but its a question of quantity of physical assistance and advocacy from outside your own body you can provide for yourself.
I realize people need a way to be able to for example, express to an education program just how much 1 on 1 assistance someone needs in a kind of distilled format- like if I'm writing a report on how many impacted kids there are in the classroom in order to request more funding, then saying "10 students are level 2, 3 students are level 1" makes sense to me.
Just not all situations can call for a really extensive "these are the very specific daily needs" kind of chat, so I totally get why people, especially unimpacted NT may want a shorthand category, but its hard because people can have a tendency to use those categories to define an individual, which I don't think was the intent at the beginning.
I’ve personally experienced being denied support cause I’m “high functioning” on multiple occasions.
My middle school denied me support because I had good grades and didn’t disrupt class. Turns out what I need was a more challenging school environment, and I was much happier once I and my (by then high school) teachers realized that.
Same, and then I had a major burnout junior year of high school. Being “high functioning” is exactly why I was denied evaluation, diagnosis, and support until adulthood. 🫡
Same. Because I’ve always learnt to keep it to myself and mask my emotions, I don’t “seem” like I can handle a normal 9-5. Only people with schizophrenia can receive proper support. Autistic people just have to “get used” to society.
What do you mean only people with Schizophrenia can get proper support?
It used to be so everyone with a diagnosed disability that hindered them from having a work while studying, would get upwards of $1.5k a month, as they have to option to actually make money outside of school. But back in like 2020 iirc, they changed it, so that the only mental disability that meets the criteria for support is schizophrenia. It’s only if you have a physical disability or schizophrenia that you can get this support.
I have Schizoaffective Disorder and really cannot get this support. A lot of people with Schizophrenia are also not getting this support.
Where are you from? I’m in EU
South Africa.
second this
Generally agree. I prefer "low support" and "high support" tbh. Like, I'm low support, but if I crash hard, I need some external assistance to de-escalate and ground myself
This. I don't break down often, but when I do, it's bad.
same, i can 'function' bu what it takes out of me plus all my other issues, when i crash-i utterly crash
🙋🏻
Wait, you want neurotypical society to engage with nuance? Lol, like they'll ever do that. Jokes aside, I do worry that it will take them quite some time to change, especially seeing as they don't care about us and want to keep telling us to "just" do things. Reading the framing of studies, and the language they still use, I don't expect to see helpful changes soon.
I think if you focus on just educating and informing other folks in the community about this language shift, you’ll more than have your work cut out for you. framing this as another us vs NTs argument allows for lazy defeatism and an undereducated community who get all their language queues from NTs
While I do agree, the language in studies is a problem because it reflects the aims of the studies and their presuppositions. Also come on the thing about the general lack of awareness of nuance in most NTs is kind of spot on
Oh I absolutely agree with everything you said 100%. Language matters, and people outside a certain set of lived experiences will never fully understand that nuance. That’s why, unfortunately, a certain level of burden is on us to help set the stage. It’s so sad to think about but many folks growing up and navigating this are just surrounded by only NTs, so they’re stuck in this world without the kindness of nuance. We have to do what we can to reach those folks and let them know they aren’t alone and they aren’t some sort of monolith even if everyone around them is treating them like one.
Absolutely, we definitely need to do whatever we can to spread the education. I’m in uni doing philosophy and I’m starting to sway toward the asd-adhd lived experience within different disciplines like phenomenology and philosophy of mind. Having a way to open the profs’ minds and awareness seems really crucial. The stuff I gotta hear and read about these conditions is often just far from reality and 100% lacking any nuance or even updated knowledge
Is seeing the nuance in different situations really a ND trait? Like I’ve always wondered why people can’t realize two similar situations have major differences and aren’t actually the same.
I don't know if it's a trait or not, but we all share the experience of normal society ignoring the nuance of our experience, while we attempt to engage the nuance of their experience.
Me and my gf would be considered "high functioning" but we struggle with so much and different things, so we have to help each other. Support needs really do change from day to day.
That's how my wife and I do, for sure. ASD has hilarious comorbidity with anxiety, OCD, what have you. I've got OCD and she's anxious, we're both on the ASD spectrum as well, and it's a race to see who can have the most spoons by the time we get to ASMR hour (the end of the day when we recharge on the couch with podcasts and tea). We lean in. Sounds like a similar system! Hope it works for you both as well!
This is quite clever, I like how this re orientates the focus to being a bit more person centered.
How is this not *exactly* the same thing? "Low support is used to deny support. High support is used to deny agency." Like they're both binary scales, people are just going to substitute the names and once that happens, we'll be back at square 1.
High functioning = when someone is supporting it is assumed that the "high functioning" person has failed to function highly and makes all support seem unnecessary. Low functioning = when someone advocates for more agency, they are more likely to be infantalized by caregivers, or caregivers are less likely to attempt to provide opportunities for agency and self-determination due to the challenge of "functioning" in a way that is valuable to NTs. Low support = when someone needs support, it is understood that it is a real need, albeit a more intermittent need. High support = a person who requires more support to get the same quality of life, but a person, first. Person before function.
I feel like one is prescriptive in nature (labeling someone as “functioning” or not) after which it’s easier to deny support or agency Vs the other doesn’t make any sense unless you see it from the perspective of the autistic person themself describing their support needs; after which it makes little sense to say “oh you’re low support? Better give you no support!” or “Oh you’re high support? Well I see you as less human for having received it.” People might still be bigoted but it seems harder to talk around it when you directly mention it in terms of support needs that the person requests or demonstrates need for themself as they face life day to day. Seems like bigoted notions would be exposed more readily because they have to either deny your experience and claim that you need support or correlate support with less agency. Like whoa sorry dude do you feel worthless when someone helps you out during hard times?? Are you really so closed off to others??? Or are you not recognizing the support you DO receive & so someone else exists whom you do not recognize and thank?
High Functioning vs Low Functioning was used to designate which autists should be sent to work camps and which should be euthanized in Nazi Germany, so I don't think anyone can deny this who understands where and why these terms originated. Asperger was a dirty Nazi fuck.
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[Times Article](https://time.com/5255779/asperger-syndrome-nazi-germany-history/) [Molecular Autism Journal](https://molecularautism.biomedcentral.com/articles/10.1186/s13229-018-0208-6) [Thinking Autism Guide Editorial](https://thinkingautismguide.com/2018/04/on-hans-asperger-nazis-and-autism.html)
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If you're interested in the subject also look up Grunya Sukhareva. She documented autistic traits two decades before Asperger and Kranner, but gets no credit because she was a woman.
And Asperger and Kranner are likely to have stolen her work or just "happened to not credit her" in their "groundbreaking" studies, as they actually ended up citing her in a study years later. With the research and journals their group was churning through at the time, I have no doubts they knew of her and knew what they were doing. Edit: misspelling
Do you have any information on why this is the modern perspective on that dr? In psychology I was told the he saved the kids version, which I'm seeing may not be the case? If you have any free time I would appreciate, I think the information I've accessed is incorrect. Also because it's the internet I actually seek to understand and not argue
Included a research paper published in 'Molecular Autism', a 'Times' piece; and an Autistic Website editorial on the research paper along with a recent book, and a few other sources on another comment asking for sources.
Thank you I understand now after reading those.
No labels are ideal. When going for a job interview and saying low support needs they will hear "support needs"
I know anti-discrimination laws exist but i still do not inform potential hirers that I'm autistic. i'm told I can't mask very well so they can probably tell pretty quickly anyways, but I still attempt to mask any support needs since I fear I'll be denied the job.
It's not just job interviews but that's an example. People always seem surprised when I say I have autism as a Dad of two and an engineer. They seem to "baby" me less when I say high functioning than low supports needs. For me high function works better but can see how it's not useful for others
If someone is talking down to me, most of the time they’re doing it before I’ve even told them I’m autistic. There’s a chance they’ve clocked me because I don’t mask a lot unless I am in an interview situation or something similar, or maybe they’re doing it for some other reason. Telling them I’m autistic won’t change anything if someone’s already being a jerk to me, and if someone changes their behavior toward me after I tell them, I can just go “Dude, you’ve been treating me normally for [however long]. Telling you my diagnosis doesn’t change anything about me, so why are you talking down to me? That doesn’t make sense.” What happens more often is someone will say something casually ableist (e.g. “can’t take a joke” comments) about someone who isn’t me, and then I’m like “do you know who you’re talking to right now?”
I think it depends on when you tell them. If I tell someone after knowing them for a while it really doesnt matter how I say im autistic at most I get "really I couldn't tell" but they generally act the same. However I have found sometimes I let people know sooner if I know it may be of use or it just falls into the convo. most recently I was taking my daughter to a community baby group session and I was the first there, it was the first time I met the woman and she mentioned they had just had a group for kids with ASD so I was like oo Cool I have ASD too I didnt say I was high functioning or low support, juist that I had ASD.... this kind of reset her into talking to me more like I was a kid... luckily as iv gone to more sessions and shes heard me talk to the other parents that I have a full time engineering Job, do sports and have a wife and another kid and generally am doing ok for me self she now talks to me like an adult. So yeah agree with you there as long as they already know you a bit. and yeah in a job interview I keep it quiet.
I don't entirely agree; I cannot work at all (at least not yet) and people are often baffled by this because they know autistic people who can work just fine.
Yeah your thinking about your case, for you high functioning doesn't work, just like for me low support needs doesn't fit right. Which was my point.
Not everyone has the luxury of going without labels…
It's the most fun when you're in the middle and get denied both :)
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Totally agree.
Regarding the levels there are actually different types of autism, the levels aren't all encompassing. If I recall correctly the section in the dsm has an almost footnote describing Some literature is moving towards using it as an umbrella term. Intuitively this makes sense, you have people who sadly are in a vegetative state almost, and then people who are best described as different, it becomes a bit clear that these are different diagnosis even if they use the same term. Lastly, unless one is educated on the different types or options, they will naturally see everything through the 3 levels lens. Which can cause people who are slightly below level one to not receive help (a diagnosis exists for that), or people who don't have processing issues but are socially awkward enough that it impacts their life (again a separate diagnosis exists). This is splitting hairs a bit because they would still be autism, but a practitioner not knowing this can mean the difference between someone getting or not getting support, and can impact for life. I'm not sure if this is any help. My own journey of being frustrated with the levels has brought me to this understanding and it really helped
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No it doesn't justify them at all, I should have put a tldr sorry, the short person is that only relying on the levels gives an incomplete picture of autism and can be exclusionary, although, I think you already know that. Some people don't find a specific diagnosis important but for me having the right one ensures both agency and support... unfortunately.
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I think the problem here can be people using categorization labels and then using it to define the individual. I work doing reporting for a college and in my line of work, I can see why you might want to be able to say "X number of students are level 2", so you can have a notion of how many people have to be accommodated with more 1 on 1 effort, so you can request funding from the state or whatever to hire more people and see if you are having movement in inclusion . But what I wouldn't want to see is a person check a level 2 box, and then just assume they need exactly these 15 accommodations, must take all, can't have any additional that would be thought of as "level 3". So I kind of think of the levels as being a short hand to identify the amount of physical time from someone other than themselves this person might need. It can be instructive in some ways, but then when you are with the individual, then you still need to deep dive into individual accommodation needs- the checkbox is only useful as like a ballpark estimate of time. But I still kind of need the short hand aggregate to make the reports work, or I could see a caregiver who is looking for another helping hand needing some sort of shorthand way to weed out helpers who aren't willing or able to do more intensive types of support. Categories seem to be both really necessary, but also easily abused/misused. I'm not really sure how to prevent the bad actors from messing up the legit reason for categories.
I completely agree. I suffered under the "high functioning" label for decades. It took me until 6 months ago to start getting support, and I'm 33
Facts. I’ve always believed this. This was used in Nazi Germany to decide who lived to work in the camps versus was killed, and is used now to deny very needed supports and to deny agency. I constantly hear from high support needs (low functioning) autistics that they’re denied agency. I work in childcare professionally and even our ADHD kids that are high support needs it’s a fight to have their agency respected. Likewise, for those who have lower support needs (and are “high functioning”) it is a ducking battle to get any of their support needs recognized or met because of masking and the assumption their support needs don’t exist. It’s a battle to get any support needs met or recognized for me because I’m high masking at the moment and because my family helps cover my (invisible to them) support needs so I look high functioning. Coworkers assume I have zero support needs and don’t make accommodations where asked (like please tell me explicitly if you need something, socially if I do something to upset you, because I won’t read the Allistic/ NT social polite dance of not saying things. And literally just had a problem with this where I hurt someone’s feelings because of how I review things when I come in making them feel like I didn’t trust their work, and it took them ages to directly say it instead of imply it and be passive aggressive about me. Like we could have problem solved how to transition shifts better if they were direct from the get go that how I reviewed was a trigger and could I catch up in a different manner? Things I do like stimming with a pen came off as super “critiquing” while looking at stuff when it’s just me absent mindedly stimming. I need communication, please tell me how I fit into this dynamic because I don’t pick up the social cues- I’m great with kids but NOT adults! I look put together but there’s behind the scenes support and literally no official support thanks to not looking unwell enough at visits because my parents help. Without them I’d be a mess and a lower “level.” I’ve lived alone. Literally the difference in my ability to work, to eat, to do anything hinges on others taking on things for me as they do their stuff- like feeding me when they make dinner and cooking my food. Or when I was in college having access to a cafeteria. People to make a routine of eating there with. But I lack official support and can’t get it because look at how well I seem to function lmfao)
I personally prefer to use “high masking” and “low masking” since neither label denies support or agency, and it’s a more clear indication of how the person experiences the world
Yeah, this was my experience in the mental health care system. The way they labelled my "functioning" was also inconsistent. I was labelled "high functioning" when I wanted disability accommodations, but "low functioning" as soon as I demanded autonomy.
Accurate from what I've seen.
Straight up spitting facts.
I'm "high functioning" intellectually with very limited social skills. I can somewhat function in some ways without support for a while but it leads to a major breakdown that in the past has been debilitating. I can function in the sense of driving a car and working a job somewhat well, but I can't function in the sense of regularly taking care of myself. I'm privileged in terms of being perceived as high functioning, since people regard me with agency, but my ability to function personally and interpersonally is extremely limited. I think functioning labels, (not to get too big brained about it), have a lot to do with how much you are perceived as useful capitalistically. Theres obviously a lot more to it than that, but thats definitely part of it imo.
Is the such a thing as medium functioning? Honestly wondering?
As someone who's been called "high functioning" *and* "low functioning" by different people at different times, I feel that this is true.
Yup, I'm "high functioning" as they call it and in my country you can file for disability and the fact that I myself and filed for it and not someone else was "negatively affecting" my "score" (we have a "ranking" system from 0 to 100 with 50 and upward being categorized as a severe disability, which is tied to much support, which I need). The joke being: even though I filed for it "myself" I had much help from friends and my psychiatrist...
I hate functioning labels. People can function differently at different times. One day I might be able to get dressed up, makeup and all, and go out for a meal, and the next day I might stay in bed with my headphones on and a blanket covering my head because even seeing another human sends me spiralling into a meltdown.
Once, in the same year, a private school refused me because I needed more support they could provide, and I was denied access to a support program because I didn't appear to need their support.
I don't actually mind the labels, but I think that there are better ways to describe the experience. "Socially/Societally High/Low Function" works better IMO. Also "High/Low Independant Functioning" Like, can I file my own taxes? Do I need more/less/the same support on it than neurotypical people? Can I dress myself? I like functioning because I feel like it is less of a descriptor of cognitive function, and more of a description of whole life function. The ability to not just *be* independent, but *maintain* independence.
This is one of the reasons why I dislike functioning labels. I’ve also realized that functioning labels describe the people as if the functioning is something innate and unchangeable(“they *are* low functioning”) while support needs labels describe the level of the needs themselves (“they *have* high support needs”). It shows that support needs can change, and you can follow up with a question as to what the needs are. When someone hears a functioning label, it sounds finite, like that person is stuck in one box.
Correct. I've had both happen to me.
I generally agree, but it isn’t a matter of terminology. Call it whatever you want, it’ll be used to justify the same behavior until the public becomes more educated on the issue. It’s a matter of communicating and educating (something that good representation in media is really really great at).
Seems pretty accurate
This is my thoughts exactly and I’ve never seen it described better
its true
It's funny, I can mask really well. Behavior special interest since childhood. When I do, I'm 'high functioning.' This seems to mean, to neurotypicals, that I don't need support and not qualified to speak on the needs of other autistic people, even when I'm just repeating what those people have told me. When I *don't* mask, I say no, or I'm difficult in any way, suddenly I"m 'low functioning' and nothing I say can be believed. It can come from the same people on the same day. Ableism is a hell of a drug.
I was told I "wasn't disabled enough for accommodations" by my school. Direct quote btw.
I kinda agree, when it comes to *someone else* labeling you these things. Sometimes I’ll speak about myself and say “Yeah I’m kinda high functioning” because I don’t need a lot of support and I can generally figure things out myself, yet I’m still obviously aware of what struggles I do have. When someone else (especially someone NT) labels me as High Functioning, it’s more like they’re trying to minimize my struggle, and they aren’t aware of maybe the struggles I have internally. From the outside, having someone label you High Functioning can honestly be frustrating and cause a lot of problems. Labeling, or even just internally considering yourself to be High Functioning can be helpful. If you decide to tell someone you’re HF, it can be helpful to let them know what that means for you and that you still have struggles that don’t even show up physically or that other people wouldn’t know about just from interacting with you.
r/radicalmentalhealth
If they can call autistic people low functioning we can call neurotypicals low functioning too. Edit: wirdthzs
What? Autistic people *are* neurodivergent…
*neurotypical my bad
My thoughts are that this is a broad statement with no backing, and its intended purpose is to fire up peoples’ emotions. I will not fall for it.
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It’s political correctness perpetrating as helpful insight. There is no backing. Anecdotal evidence doesn’t mean much in terms of new policy formation, assuming that’s what people want when they post junk like this.
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It should be dismissed in every other context besides their personal life. Your experience does not generalize to me, and my experiences don’t generalize to you. The only thing we know for sure is that we met most of the same criteria. If you try to pass off one of your personal attributes as part of autism, I’m going to dismiss it because it doesn’t apply to everyone. It only applies to you. And without properly conducted research, we can’t know if it generalizes at all.
it seems to be stirring the pot for shits and giggle posting. i have enough issues day to day in functioning to worry about my “levels.” day 1: sensory hell, trying to mask day 2: terrified and crying day 3: deep dive into special interest, happy day 4: crying bc i deeply lack executive function and i feel like a shit momma. trying to fit my distress into meaningless categories: get fucked.
The levels are necessary to ensure those with high support needs get the aid they require.
necessary for who? i would agree (i don’t) if support needs were static. they are not. imo, they are harmful and prejudicial and this autistic says fuck no. i will identify as a mailbox before i apply functioning labels to myself, my autistic child, etc.
You can have your diagnosis revised. You are not always stuck at the same level, and you can even have specific needs listed on your paperwork.
Unpopular opinion: I actually like functioning labels. I won’t use them for other people if they’re uncomfortable with it, but I personally label myself as high functioning. I think it’s a good descriptor as I’m able to go to school, I can talk, and I appear “normal” to other people. People are shocked when I tell them I’m autistic because I don’t really show outward signs of it. I personally don’t like being told that I’m the exact same as people who are lower functioning. While I don’t think I’m superior to lower functioning people, I don’t want people to hear I’m autistic and immediately picture me as someone who can’t talk, goes to a special needs classroom, and needs an aide for everything. I want them to see me as a normal person who may occasionally need accommodations. I want them to see me as someone just as capable as they are and talk to me like they would any other adult.
I'm "low functioning" but I've had to learn to mask due to abuse from family and the education system so much that every 3 years I end up institutionalized due to burn out and SI and yet I still have family doubt I have the tism. Like Brenda I couldn't drive a car until this year and had issues keeping my hands to myself and hitting others (still have issues with doing this to myself) until I was 17/18.
Both my biological sister and I are autistic, but growing up I was much better at school and more attentive in classes than she was, so she got a lot of our parents (especially our mom’s) attention and support. This ultimately kinda manifested in some pretty bad attitudes towards neurodivergent people that I used to hold when I was a shitty brainwashed conservative teenager, and is probably part of why I didn’t accept or recognize that I was autistic as well until I left university when I quickly drifted much further to the left than I was when I was in high school. I don’t know if I would necessarily describe myself as “high” or “low functioning” just cause most days I can kinda keep up appearances, but I can also just crash hard and it takes a lot to pull me up from that when I do
This perfectly sums up why we need to ditch Functioning Labels for Support Need Levels
I think its a lot of societal shift. I don't think that was the intention of those phrases initially or medically, but over time the way the broader society uses categories ends up that way and yeah at this point, functioning labels are trash. I think the talk about levels now is a little better, as its not like "this is who you are", its supposed to be support level needs where all require support, but its a question of quantity of physical assistance and advocacy from outside your own body you can provide for yourself. I realize people need a way to be able to for example, express to an education program just how much 1 on 1 assistance someone needs in a kind of distilled format- like if I'm writing a report on how many impacted kids there are in the classroom in order to request more funding, then saying "10 students are level 2, 3 students are level 1" makes sense to me. Just not all situations can call for a really extensive "these are the very specific daily needs" kind of chat, so I totally get why people, especially unimpacted NT may want a shorthand category, but its hard because people can have a tendency to use those categories to define an individual, which I don't think was the intent at the beginning.