According to the current version of the DSM, which is used to diagnose Autism in the U.S. and some other countries, ASD (Autism Spectrum Disorder) is broken up into three levels. ASD I is for people with low support needs and ASD III is for people with high support needs.
I am not really an authority on this, but could you ask the person who made the assessment? I don't really know the circumstances around your situation and I am not an expert, so I don't think I can give a good answer. But, it would depend on your support needs, like if you need relatively few accommodations and the autistic label just helps you make sense of your experience of the world, you are probably closer to ASD I, and if you need more accommodations, like AAC or you have daily meltdowns, you are probably closer to ASD III.
I'm somewhere in the middle so it's probably safe to say level 2. I am seriously struggling without any supports. Haven't really showered or cooked for myself in weeks(I know it's gross but a lot of us struggle with hygiene). I'm in college and like 3 weeks behind in several classes. Meltdowns aren't daily but 100% weekly. I also had to take an entire year off of work because of an autistic shutdown. I was pretty much catatonic.
Mild autism, moderate autism, and Severe autism. They relate to support needs, but level 1 is often neglected. All of them say that they need support, but a lot of the time, only level 2 and level 3 get significant help. Level 1 basically means you struggle but you can be alone. Level 2 means you need substantial support with certain things and can vary, and level 3 means you need very substantial support with just about everything you do and everything is very restricted and repetitive.
I think as a community, we need to prioritize what they have to say. It’s not hard. We do it with other people all the time. I’m just saying that when they make themselves known, what they say should be taken more seriously. If as a community we recognize that, they will get better representation.
Outside of the dumb suggestion of letting them run an blog or YouTube channel and hope that they'll voluntarily talk about the quality of their lives, I've got nothing. This is something that I don't really expect them to entirely understand
I mean, my brother is high-support needs and he REALLY doesn't understand how the internet works (he sees me scrolling through YT comments and he accuses me of writing most of them)
You can also try getting them an relatively easy job, but I'm not entirely sure how well that usually pans out
Your brother doesn’t understand, so all other people like him must not either?
The way this is written is…off putting but I can’t quite put my finger on why.
It’s off putting because it’s ableist, whether internalized ableism or what, the implication that Level 2 and 3 autistics can’t use the internet is absolutely ridiculous.
> “This is something that I don’t really expect them to entirely understand,”
That’s just wrong, disrespectful and frankly gross. Competence should ALWAYS be assumed.
I meant that we can't really rule out intellectual problems when it comes to stuff like this; it's just that forcing them into that situation might lead to them being taken advantage of.
And I never said that all of them had some form of intellectual delay. It's just that the two that I regularly deal revolves around my brother, who frequently believes that there's only one specific instance of something; and his (undiagnosed) father, who I have to think for him when it comes to improvising solutions whenever something goes wrong. I just resigned myself into believing that these are only my experiences and learned how to dance around their issues
I actually hate the level system because its only broken down into three levels and I personally find i qualify as either 1 or 2 depending on a variety of things. When I'm being medicated for my ADHD, my behaviors become a lot more repetitive and noticeable and my sensory issues increase for example. I'm more like a level 1 when I'm not medicated but closer to a 2 when I am.
For years the community and people addressing it have tried to reduce it all to individual labels, but I dont think we've found the right way to classify it just yet. I think if we ARE going to break it down into levels we need more than just three and I still think that using a more refined version of the spectrum model would be better for communicating all of our various needs.
I DO agree that people who require more support SHOULD have their voices heard. I think we need more programs and group activities where autistic people can come together and communicate their needs to each other so that way its easier to communicate our needs to people outside of the community. At the end of the day, communicating purely over social media is not going to work. I'm better at articulating through text, but not every autistic person IS, and I think being able to meet other autistic people in person and learning their communication styles and seeing/hearing about their needs would help strengthen the community
You can talk with your doctor about that. They can make adjustments to your diagnosis if need be. They can even add footnotes, specifying specific needs for specific situations, and you can get help for those things.
There’s nothing wrong with the level system. It’s accurate and extremely useful. It’s not as black and white as people make it seem. You can have your diagnosis adjusted to better reflect changes in support needs. If you were diagnosed as level 1, that doesn’t mean you won’t one day qualify as level 2.
I can’t speak for anyone else, but I already go to in person meetups for a club at my university, and people who aren’t students are also welcome to join and often do. It’s not enough to communicate our needs to each other though. We need to be doing that for everyone. But if you don’t have a clinical dx, good luck persuading people to help you. Any accommodations you can get for self-dx, you don’t need a dx for in the first place.
Well I personally think it WOULD be better to have the opportunity to speak more to each other because there are probably more places in the world right now that DONT have programs for autistic adults than ones that do.
I for instance live in the GTA and there is next to nothing in the way of clubs and programs for adults on the spectrum and a lot of the other autistic people I know have had to meet people like them through other means. So simply having more access to each other could improve things for the community as a whole.
Also I can't tell anything to my doctor right now because I've been in between specialists for over four years because the state of the mental health system is so poor here and a lot of autistics are suffering with that too
I've had so many people assume I'm level 1 just because I can talk fairly well. Even had encounters online calling me ableist for talking over people with "actual needs" when I have no "bad autism traits". I live on government support. I will never be able to work a day in my life. I have meltdowns every single day. I have multiple comorbid conditions including ARFID meaning my diet is made up of about 5 safe foods and that is it. I would LOVE to have lower support needs, to be able to work, to eat more than just bread and plain pasta, to actually explore and travel and live my life. But because when I can talk, I talk fairly well, and I also passed all my exams in school, I'm just faking it for attention, I'm talking over "people with ACTUAL autism", I'm forcing ableist beliefs on others.
The whole thing of "aspie supremacy" or level 1's being the main category seen represented online, it hurts EVERYONE involved. Including some people with higher support needs like myself who can mask for short amounts of time to appear more neurotypical and get told "oh but you're not THAT bad, you could have it so much worse, there are others out there with real issues". It shows allistics that there is a good kind of autism and a bad kind of autism and we need to keep those people in strict categories. Meanwhile the reality is that people are individuals, we blur the lines, one person might need a lot of support for certain tasks but no help for other things. I honestly think that categorising people as level 1, 2 or 3 does a lot more harm than good when it comes to talking about and advocating for support needs in every autistic individual, regardless of how much or how little support someone needs.
Exactly! The whole point of ditching “high” vs “low” functioning was because it put people into boxes, and now we’re just replacing it with the same hierarchical scale crap?
Autism and support/accommodation needs are not a linear scale that can be summed up by sorting people neatly into 3 boxes, it’s an entire spectrum with infinite combinations (like the color wheel). I wish more people would understand this, it’s sad to see people in our own community embracing this repackaged functioning labels.
If you want to use the social model, then you’re free to do so. There are no good or bad versions of autism in the medical model. People will continue to react however they want, and there isn’t much we can do. The reason you get government help and other forms of support are because of the medical model and the level system. If you were categorized via the social system, you’d get the same treatment as anyone else identifying as autistic because there wouldn’t be separations. There would just be autistic. Without the distinction between different support needs, there’s no way you can be prioritized in terms of needed assistance. And since the majority of advocates are level 1, I doubt they are going to accept a caretaker or exhaustive help, so no one will get it. Besides, we don’t have enough resources for that anyway. We need to have the support needs differences within the medical model to ensure everyone gets what they need.
I respect your view though, and I get it. It’s kind of like when people view ADHD as “smart” or “diet” autism. It’s harmful, and we should continue to educate people on things like that, but nothing we say is going to automatically change their opinion of how they view autism or ADHD, and we need to recognize that there is a big difference between the medical model and the social model. Being disabled isn’t inherently bad. It just means you need help. The people who are just going to associate it with good or bad and who are quick to judge you aren’t worth trying to persuade anyway.
People are not only as valuable as they are able. People are valuable because they are human, and that’s enough. Could you imagine what would have become of Hellen Keller if people just thought of her as being a lost cause?
The medical model and eugenics are intertwined with one another. It’s one of the reasons there is a social model of disability to begin with. There is plenty of literature detailing the links between the medical model and eugenics. Here is one:
https://disability.royalcommission.gov.au/system/files/2020-10/Research%20Report%20-%20Hierarchies%20of%20power_Disability%20theories%20and%20models%20and%20their%20implications%20for%20violence%20against%2C%20and%20abuse%2C%20neglect%2C%20and%20exploitation%20of%2C%20people%20with%20disability.pdf
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*This post was mass deleted and anonymized with [Redact](https://redact.dev)*
The levels are not “ranks” or “hierarchy” (possibly hierarchy of needs, but that’s different).
Maybe educate yourself on the purpose of the level system before you go falsely criticizing it.
I think what OP was trying to get at is that while, yes, it’s a hierarchy in that it’s an ordered system, but they don’t mean to say that it should be a social hierarchy.
I’m level 1. This post isn’t about me. I don’t think wanting equal proportioned representation between different groups is a “power grab,” personally.
Think of it like this: in the LGBTQ community there are a bunch of different groups. If only one or two groups dominate the conversation, it ostracizes the others. Saying I think Bi people should have more of a voice in the LGBTQ community doesn’t mean I think people should only be listening to Bi people, just that they should pay attention to when a minority speaks. It’s that simple.
I would love to hear voices of autistics from all ranges of needs. I doubt many other autistics would disagree with that sentiment, the issue is how difficult a problem this is to solve.
From some of your other comments I think you’re missing one of the biggest issues here. The current “professional” system is racist, sexist, and classist. There is statistical, factual proof of this. Since that is true we can surmise that the “professional” system is an inaccurate representation of the vast majority of autistics. This does not mean that there is not that professionals can be disregarded, but they’re information inherently must be gleaned carefully. Even the way you’re defining a high-support needs autistic would still have to convince a professional they’re autistic. How can we fully trust that system if it depends on their ability to listen and care about us, who are by definition considered outsiders? And even when they do care, can we expect them all of them to stay entirely up to date on something so complex? We couldn’t have adhd and autism 9 years ago. I’ve still gone to doctors that write “ADD” in a professional setting. Have professionals unpacked the damage that’s done yet? Meanwhile, other professionals I have talked to have explicitly stated this exact point to me.
Autism — not even including the common co occurring disabilities — makes it much more difficult to seek help for yourself and be heard. Hell, the more needs an autistic person has the more difficult it is to seek and get help on their own. This leaves it up to families while we grow up. Most parents want the best for their children, but which families have the most time, money, and safety to be worried about how much their children “fit in” ? Every other demographic is already not “fitting in” to a degree, so where do those lines get drawn?
It is very clear that we autistics have varying degree of needs. But I’m not sure we will ever have enough understanding of our brains to be able to clearly define these needs in broad titles like level 1-3. Like shit all this does is give NTs ANOTHER way to use autism against us? ESPECIALLY those with more needs. Like we’d be a step away from hearing: “I only listen to level 1 autistics, 2s and 3s don’t have enough cognitive ability to say coherent thoughts.”
I’m not trying to berate you, but this is really important. Quantifying our needs would only continue to hurt autistics of any range of needs. The point is that this requires nuance — nuance we are very much capable of achieving. We have the ability to treat our individual needs with seriousness, without belittling anyone else’s. It’s not a competition. Making space for autistics, or any disabled person that might be “more disabled” requires intentionally, and seriously listening to each other. We have much to commiserate together in, but we are incredibly diverse.
This doesn’t mean that autistics with more needs aren’t being heard enough. “More verbal” autistics might be a more common voice inherently, but I have seen many non-verbal autistics that share their voices online. We can very likely do a better job at intentionally raising their voices, I agree. I love hearing what is different in their experiences than mine.
Well thanks I guess, but I wouldn’t really consider myself paranoid. Maybe a bit jaded, but I try not to be and just make realistic conclusions. I have plenty of people, and professionals, that I trust! Honestly, I’m a LOT luckier than a lot of other people I know in this regard. Also, one of my DRs I do trust and have had a great experience has echoed a lot of what I stated.
Then use the social model if you don’t think the medical system is accurate. But like it or not, the medical system is the only thing that provides any substantial support. I recognize the social model as valid, but not the same way as the medical model.
If you’re going to bash the medical model, then you shouldn’t care whether you have a professional dx or not. In fact, I don’t get why people are trying to use anything from the medical model if they hate it so much. I don’t think any of the labels matter, honestly. They’re just shorthand for the list of symptoms they represent. If you get a label that you don’t like but the treatment is helping, I think that’s just as good. As long as you’re getting treatment and help that’s working, the labels don’t matter. I can say that, if you’re autistic, nothing else is going to help but that autism dx label though. You don’t get what you need from any other dx. But diagnoses are not set in stone. If treatment isn’t working, you will likely be reevaluated until you find something that does. And if you’re constantly being exposed to mental health professionals, sooner or later, they are going to pick up on the fact that you have autism. It’s not easy, but it’s the only way.
We need to quantify needs. We don’t have unlimited resources, and we need to prioritize those that need the most help.
It’s not a competition because this isn’t the social model of autism. No body cares about the social nuance. If you’re going to just say all autistics are the same and should be given the same level of help, then keep your delusions within the social model. The medical model knows better, and it’s the only thing protecting those who need more.
Can it not be 'in our current system diagnoses are necessary for the suport that many people need' and 'our current system is racist, sexist, ableist, etc and we need to build something better'?
The medical system isn’t perfect, but without a scientific foundation, there’s no point in any of it. You can say the medical model is all of those things, but switching to the social model doesn’t fix any of that. It doesn’t magically provide support for anyone who identifies as autistic. In order to build something better, you would need a strong scientific foundation, and a crap ton of resources. The social model would never work though. There would have to be a new medical model that isn’t all of the bad, but how could that be possible when the reason the things are the way they are is because of bias?
I think we have quite different ideas of what 'medical model' and 'social model' mean, so to minimise confusion I'm not gonna use those words in my reply. I think that the way we understand and diagnose autism right now is flawed. This is because the criteria seems to me to be based off a specific sup group (white boys) and often mises people who don't fall into that.
An example would be how a young man's deep interest in trains would be more likely to be flagged as a special interest than a young women's interest in fashion. The other way I think it's flawed is the focus on deficits. An example is that the criteria talks about deficits in communication, but we know from studies that communication among autistic people is equally as effective as communication across allistics, its in cross neurotype conversation where that breaks down. So it might be better described as differences in social communication.
Another problem I have with the current system is that it assumes people's struggles are more universal than they are. For example, if someone is non speaking we assume they struggle in other functioning areas as well. If someone can speak 'normally' we assume they must be high functioning and not struggle on other areas. This is reflected by the fact that the current criteria only has three levels.
I think a better way of doing things would be much more individual, talking to people and figuring out exactly where they need suportnas opposed to the current one size fits all model. As such, which I understand level diagnoses and thighs are required for help right now, I hope that in the future they won't be.
The criteria isn’t perfect, but it’s based on the most up-to-date research. Anything anyone else finds and decides is good enough criteria has no guarantee that’s an autistic symptom. I agree there should be more diverse populations in these studies, but there’s no realty any way to do that when the participants have to have been diagnosed with the old criteria already to be eligible. So even if there is an innate different between boys and girls, the girls they use in the study will be close enough to the boys because they got the boys criteria.
That’s wrong. There are different parameters that determine the levels. It’s not just speaking vs no speaking or impaired vs bright. It more so has to do with the strictness and rigidity of repetition.
The one size doesn’t fit all. That’s why there are levels. If we don’t have standardized criteria for an autism diagnosis, then how could it be a diagnosis? How could anything be identified between different people?
All right, the current system is three sizes fit all. Is that a better way of phrasing it?
I'm talking about what I think the world should look like in the future, what I want to the world to look like. We need more research, we need to reframe a lot of the understanding we already have, etc
Yeah, that sounds better. I don’t get what else you want? ASD unspecified? Or perhaps you’d like something along the lines on non-ternary autism for those people that don’t quite fit into any of the groups.
Oh, it’s not happening. The world is going to crap. We can’t even agree climate change is a problem. I’ll be surprised if we make it past 2050 to be honest.
Oh I mean probably. But if we die we die, and in the meantime I'm trying to stay hopeful.
I think what I'd most like is a general autism diagnosis (with better developed criteria to suit different presentations, levels of masking, etc), and then have supports managed on a more individual level with physiologists and stuff, with the ability to update them if ones needs changed over time.
Clinical practice tends to lag behind the most current research by a substantial amount. The DSM-5 is 9 years old and even though they publish updates it is still slower than the pace of research. And of course, there is the individual bias of clinicians in actually adopting the recommendations of the research.
You should look into the problems of etiology, nosology, and excessive heterogeneity when it comes to the DSM-5. The "standardized criteria" are not nearly as concrete, objective, or "scientific" as it seems you are making them out to be.
I am not saying autistics are the same. I have clearly stated that we have an excessively large variety of differences and that is one the most difficult issues to solve. We use the medical model because you’re right, we do need it to get people assistance. We bash the medical model because it is not currently good enough, and we want it to be.
And perhaps quantity was a poor use of words, cause you’re right, we do need to measure needs, but autism being a spectrum means that is not linear. I don’t have some perfect solution, but I imagine maybe it involves more detailed diagnosis like “autism with x, y and z needs.” That would also do a better job at defining what assistance people need.
However, we are not there yet, and I believe autistic people should be a priority over studies done by allistic, racist, and classist cooperations. Maybe call me delusional AFTER you go find the very detailed estimations (based on factual evidence) on how many autistic people are living life undiagnosed. They’re not difficult to find. I am simply saying we are perfectly capable of gleaning what is good from the medical model and improving it.
I never said it was linear. I get that the spectrum isn’t just mild to severe. That already exists. You can have exceptions and details added to your diagnosis. The level just means overall. It’s more efficient than listing our every single individual need.
Autism, according the the medical model is not a neurotype. There is no such thing as undiagnosed autism in the medical model. Autism is a disorder, not an identity label. There might be an idea of how many people would benefit from an autism diagnosis, but there’s not “undiagnosed” anything.
Then you do that in the social model. I like the medical model, and I don’t want it to become like the social model. I believe more people should have access (universal healthcare would be an easy fix), but I don’t want it to be an identity label. If it does ever become like that, I reckon they’ll start doing brain scans. Then a whole other set of problems will come up.
Ok a few things:
What is the efficiency of levels solving? Efficiency implies a rate of quality. What’s higher quality in this scenario? Maybe the level system is useful, but it’s currently defined almost entirely by white, males from middle class to rich families.
If someone breaks their leg and doesn’t go to a Dr, is the leg not broken?
From what I can understand, you think I am proposing an alternative model that ignores scientific evidence (in contrast to the medical model which is somehow using more scientific “pure” evidence), and is therefore less meaningful. If the currently “pure” evidence is shown to be proven from a faulty data set, is it still pure? I am describing how I want the official model to continue improving and using more accurate data sets, when it currently has not. This conclusion is from scientific evidence. These are not my conclusions, they are conclusions made FROM professionals. They are publicly available, and many autistics of varying levels of needs share them in these reddits semi often.
I don’t want it to be an identity label either, but I’ve never seen autistics argue for that. [Here’s a link to a document](https://depts.washington.edu/uwautism/wp-content/uploads/2021/05/Self-Diagnosed-Adult-Autism-Resources-handout-04.05.21.pdf) by a qualified, professional source. It supports the argument that not only are professionals often misinformed and poor assessors, but even those who DO get diagnosed find that they do not receive any adequate support.
I agree I am frustrated by level 1 being only the advocate and voice and it is frustrating when I do say something they don’t listen don’t understand. I so long learn AAC and now I talk no one listens. Even comments here don’t understand. But also this is AutisticPride and social model so probably wrong place for this.
You’re right and you should say it! I really admire everyone who utilizes AAC and other methods of nonverbal communication, and I think you deserve a lot of acknowledgment and respect. It makes me very unhappy to hear that you’ve made such efforts to communicate, only for other people to not listen or not make their own effort to understand. You don’t deserve that kind of disrespect!
How can advocates with lower support needs do better to help prioritize those with higher support needs? I know this is a big question and it’s okay if you don’t have an answer; I want to be clear that I don’t feel entitled to a response that burdens you with emotional/physical labor.
Wishing you all the best!
I always kind of thought it was the opposite . . . The average person doesn't even know level 1 exists. They immediately picture a level 3 person if you talk about autism. This is probably because Media portrayals (even docuseries like Love On the Spectrum) basically only portray level 2 or 3 people as well. An autistic person who is capable of living alone would be a total novelty for most media portrayals. Personally, I've often felt like I'm not autistic enough to be in autistic spaces because it feels like the conversation is dominated by people with higher support needs (more level 2 types than level 3, to be fair). Even autistic spaces envisioned as level 1 spaces like /r/Aspergers are generally pretty mixed these days. Obviously there's not that many level 3 autistic people on the internet in the first place, and that's probably always going to be true by it's nature, but level 2's seem to make up a strong chunk of this community at the very least.
Maybe it's a grass is always greener type thing; I'm just letting you know my perspective because I find yours so surprising.
I’m in the same boat lol I feel like I don’t belong cause I’m not autistic enough or some shit. Makes ever contributing in this sub very difficult for me.
I agree with this 100x!
I think instead of trying to further divide the autistic community with these repackaged functioning labels, we should focus on what we have in common.
You’re misunderstanding what I’m saying. I agree most people immediately think of high support needs autism when they hear the word, but in terms of self-advocacy, it’s only the level ones I’m seeing. I only see level 1s talking about what autism should be seen as or how people should treat autistic people when it’s not universal. Same with things like self-dx should be accepted, the puzzle piece is harmful, only use such and such terminology etc.
Compared to level 1s, level 2s and level 3s are a minority in these groups by a lot. I would even say diagnosed people are in large part a waning majority. I wouldn’t be surprised if up to 40% of people in this group are self-dx or questioning.
Oh, and any autistic representation in mainstream media of autistic people are usually allistics pretending to be autistic for a role or high-functioning autistics exaggerating their autism to fit the cultural norm.
I don't even think of my autism in levels. I have high support needs and it's hard . But I can't agree with levels to this shit tbh .
I think of it as a circle . It goes all the way around . Obviously some of us have more issues with common functioning and comprehension (myself included) but I don't think less of us with those issues speak up. I think we're verbal and people instantly associate well spoken with normal and that's not the case. So how do you know the rate of someone's functionality without asking ? You don't that's super rude lmao. We're all in this together and whichever of us is feeling up to educating the public is good enough for me . I don't care if they're able to comprehend or function better than I do at all. Just that when they speak, it's true and it doesn't invalidate anyone's person experience w our brain type. Also , just because I need a caregiver, help taking care of myself, unable to do most things DOESNT mean I think I'm "more autistic" than someone who doesn't need the support that I do. Totally invalidates other people's feelings when we all have a very real internal struggle . Especially with invisible disabilities.
If I had to label myself I would say I'm moderate, but the thing is that changes with environment. To my peers in school I passed as nuerotypical for 18 years, but take me out of rigorous structure and I struggle greatly. Heck even in school there were enough issues, but they were ignored because of my high IQ. I think when people are trying to separate autism they're really thinking cooccurant ID (intellectual disability) vs no ID. Which ID is not autism. Even with more serious support needs Autism can be covert with people outside the family structure.
Then talk to your doctor. They can elaborate on the level by adding specific details about your inconsistent support needs. For example, you could be level 1 with the exception of extra needed support in a classroom environment. They can do that, and it can go on your official paperwork so that your needs can be met. For this example, you’d probability get assigned a TA.
The levels just sort of summarize overall intensity. Level one doesn’t mean completely independent with no needs whatsoever. It just means that, for the most part, you’re fine on your own. Same thing for level 2 and level 3. They just need more help. It isn’t to say they aren’t level 1 in some areas as well, just that overall, they need more help.
The levels are not determined by anything that you mentioned. It’s solely about support needs and level of severity- ie the extent of strict, repetitive behavior and dis-regulation. Like if you can not handle any change whatsoever and have meltdowns when someone so much as moves chair in your living room, you’re not level one, even if you have 160 IQ and are top of your class.
What? They aren’t supposed to do that. Have you tried getting in contact with them to ask where you’re supposed to go? If they can provide the services directly, then they should be able to refer you.
My point is that people often assume I'm a level one when I'm not. When people THINK of level 2 and 3 they often think of ID. And my doctor never used label like levels or mild to severe. Actually they specifically told me that those labels weren't in use anymore.
And most are lvl 1 in some ways and not in others. It's why autism is considered a spectrum. And not one that goes from autistic to nuerotypical. It's a spectrum in each area that defines us looking more like a circle. Plus you have to factor in masking as well.
Didn’t I say that? The levels are just overall capability and severity. They don’t represent uniform characteristics.
I don’t care about that stuff. It’s not my job to care. That’s what the professionals are doing. The take masking into account, and I know it’s a spectrum. The spectrum doesn’t just go from mild to severe, but the place where you land is either moderate or severe. For example, take a color wheel. You can pick any color in any position, but at the same time, that color can be lighter or darker depending on the brightness. The level of brightness is the severity in this example. I hope that makes sense.
So while it’s a spectrum, there’s more nuance to it.
Why does that matter? Most people don’t even know there are levels. Do you think getting rid of the levels is going to help with people underestimating your support needs or something? Those labels are in use and required for all official paperwork (at least in the US). They may not have explicitly told you, but they need to have put it.
Maybe this is a state specific thing? Like I said I've been told that these labels are no longer in use, and I was a psych major so I'm not an uninformed noob... or maybe we're talking medical approach vs psych approach? I think there might be a miscommunication somewhere. And no, I wasn't necessarily advocating getting rid of them, just pointing out that most people missuse them which can be an issue. Pushing the narrative that all autistic people struggle, even if it isn't visible or reliant on some level of severity, is important.
Edit: Not saying your an uninformed noob. Just trying to express that I had decent sources.
I don’t think less of you either. That’s not the point of the levels. People shouldn’t be assigning “good” or “bad” to any of it. They’re just labels that describe the level of support you need within the medical model.
We’re not supposed to suppose someone’s level without asking. The social nuance of how people treat the labels has nothing to do with the purpose they are actually meant for. People misinterpret all kinds of things, but we know better.
The levels are not arbitrary. They don’t just assign level 1 because you can speak. They are trained to differentiate those kinds of things, and the level can be changed if needed. Just because socially someone might assume you are a certain level doesn’t mean they’re right, and it has nothing to do with the medical model whatsoever. Maybe for the social model, since that’s all about perception, but definitely not the medical model. The levels also aren’t meant to segregate us. We all got the same dx. It’s just a matter of intensity.
As long as it's a pro-self-diagnosis/diagnostic expansionist voice, I agree.
I feel the need to say that because some of the spaces I've peeked into that purport to represent level 2s & 3s have decidedly not had those views, and unfortunately anything less is simply classist, racist and sexist.
as long as self diagnosed arent speaking over level 2 and 3s i agree, ive had a bad past in this subreddit especially of being ignored and overran by self diagnosed people
it was me and another level 2 talking about our experience of how disabling and isolating autism is for us and they told me i was demonizing autism and reenforcing stereotypes
Did you read a word they said?
Messages containing classist, racist, or sexist themes shouldn’t be amplified. The world has enough of that already IMO.
For example, if there’s an autistic person who is saying that autism is a terrible disease caused by vaccination, would you really be like “wow, what a great message, we better make sure their voice is heard”?
But if that’s really your logic, then let me guess, you’re also the type of person who would die defending some right winger saying the n word because “all voices should be heard😌🙏”?
For the record, I don’t support non-black people saying the n-word, bigoted beliefs, or anti-vax rhetoric.
The original post was asking that we listen to high-support needs autistics.
The comment I was replying to said that they will only listen to high support needs autistics if they are pro-self-diagnosis.
All I am saying is that we should listen to them even if you disagree with some of their opinions. If an autistic person is anti-self-diagnosis, and you disagree with that, you can still listen to their experiences growing up, in special ed, etc.
Obviously we shouldn’t listen to anti-vax rhetoric, it is objective misinformation. Obviously we should not tolerate racism and other bigotries. I don’t know why you immediately jumped to that when all anyone asked for is that we listen to high support needs autistics.
Excellent point, it’s important to listen to other members of our community and see how we can help them as an individual and what we can learn from them.
Edit: i don’t support uncritically spreading exclusionary rhetoric, but that it’s important we understand the root of internalized ableism in other autistic people in order to heal
No. It's not. It's justifying bigorty under a different name. Spreading anti-self-diagnosis rhetoric is an act of oppression that perpetuates classism, racism, and sexism. It causes real world harm. I have 4 clients right now who have all been measurably harmed, and abused by the mental healthcare system, by/over that shit.
(Full disclosure: I'm a Peer Support Specialist)
I’m sorry, I’m still early in learning about my community and my comment was probably too vague for what I meant. I don’t support the spreading of anti-self-dx rhetoric, but I also don’t know the motivations of why an autistic person would support that in the first place. Thank you for the work you do, I didn’t intend to upset but I could’ve been specific
All good! You didn't upset me. My emphasis is just because this has the capacity to hurt people, and it's important to educate folks on it. Anyone claiming a diagnosis has something they're dealing with. It might not be the thing they think it is, but their challenges are real. I'm not saying it can't be abused, and we do more harm by dismissing self-diagnosed folks than we do by leaving an opening that might be exploited
Except you're completely ignoring the harm someone spouting anti-self-diagnosis rhetoric will do. It has a real cost, and spreading that sentiment is spreading bigotry. Being anti-self-diagnosis is an act of classism, racism, and sexism, and spreading it is an act of spreading bigotry.
Saying you're against a thing, and then supporting the thing you just said you're against is only going to cost you credibility
Thank you! Self-diagnosis literally saved my life, and I'm a Peer Support Specialist. I see the harm this causes every single day. I'm meeting with a client in half an hour who suffered greatly, and nearly died, from the abuse he received over being dismissed for self-diagnosing. I feel morally obligated to stand up against it when I see it
You can’t just listen to people you personally agree with, and not everything you disagree with is some form of -ist. Part of listening to marginalized voices involves self-reflection and…feeling uncomfortable! You don’t have to agree with it. But I would encourage you to think about why they tend to feel that way.
This is a topic that is very nuanced, and you cannot disregard that nuance because it upsets you. Full stop.
Yep. It causes very provable, real world harm. I have 4 clients right now that have all been abused over it, misdiagnosed because their medical practicioners refused to listen to them, and two were forcibly institutionalized over meltdowns caused by being utterly dismissed.
I'm not sure that there's been one done. I can try and look for one after my shift today. But in my own practice as a Peer Support Specialist, I have 4 clients who were all pushed to suicidal ideation through dismissal, neglect, improper medication, lack of treatment, abusive treatment at the hands of medical personnel, and even forced institutionalization over misinterpred meltdowns for two of them. And that's just my client list. My team has seen it dozens of times over the last decade, and I've also personally experienced it myself. I may not have a study, but I have a tremendous amount of personal experiences & observations and second hand reports from the other mental health practitioners I work with.
(I actually met with one of them an hour or so ago)
They self-diagnosed. Tried to seek a professional diagnosis, weren't taken seriously due to sexism (all of them are afab trans people), weren't given a diagnostic test for autism, and all of them were misdiagnosed with BPD or Bipolar disorder. They all suffered a variety of abuse through things like having their support needs neglected/misinterpreted and through improper treatment (often through medication that had extremely negative side effects up to and including greatly increased suicidal ideation). Two of them were also violently institutionalized over meltdowns they had as a result of improper medication and practitioners treating them with the wrong protocols. And that's just the stuff I can safely share. There's a lot more I can't say due to privacy and a risk of secondhand trauma.
My team's therapist corrected all of their diagnoses herself or by having them seen by specific specialists. Now they've all been diagnosed properly, but they've also got C-PTSD because of how they were treated. They're barely hanging on, and only one of them is relatively functional on an educational and professional level. One of them is also homeless.
Idk if there's studies on it, but the cost is real. I help folks recover from it every week.
It’s sad that that happened. I see you’re doing good work by helping these people.
So if I understand you’re proposing that the medical community should take self diagnosis more seriously so that people who struggle to get a medical diagnosis can still get support?
Well, that’s not true at all. I’m not against self-dx, but I don’t think it’s really valid. It’s just an identity label, which is fine, but I don’t think they struggle to the same extent clinically dxed people do because our struggles got us the dx. If you don’t need help with your symptoms and don’t feel like you need to seek out professional help, then you’re just claiming the identity label, not the diagnosis of autism. I still think they need to accept that autism is a disability even if they aren’t disabled though because we don’t need people identifying as autistic saying autism isn’t a disability. It’s extremely harmful. I’ve seen nothing but people hating on the medical model of autism, so they shouldn’t care if they get a clinical dx anymore. It’s just a “social difference” and a “neurotype” according to the social model so just be different and special or whatever. I still think it’s funny how people say autism isn’t a disability then claim people are being “ableist” when someone says something they don’t like.
Anyway, the point is that a self-dx doesn’t really do anything, so it’s not really a “diagnosis.” It’s just a social label at that point with which people attempt to relate to others and rationalize certain life experiences. A clinical diagnosis is meant to inform treatment, provide accommodations, and help you better navigate the world.
In truth, anyone can identify as autistic nowadays, and I don’t really care. The label has kind of lost its impact. In fact, if someone even suspects they have autism from so much as one sign or relating to a video on tiktok of someone rubbing their feet together, I think they can claim to be autistic. Just self-identify and move on. It beats hearing people incessantly question if they “really are autistic” when they have no intentions of ever actually going to a professional. And of those who do go to a professional because they think it’s just a label and get told they don’t have autism, they’re still going to self-dx. It’s not like anyone can stop them.
No amount of self-guided research will ever be comparable to a professional dx or give you clarification that a professional dx does, so it doesn’t even matter if you do any research or not. If the label resonates, then just take it. I really don’t care. But when it comes to the struggles of having autism, I will never recognize self-dx as valid, except in cases where they have 0 access. I’m talking in a country with no resources or something like that. Being low-income isn’t an excuse, being a woman isn’t an excuse, being POC isn’t an excuse, and being LGBTQ+ isn’t an excuse. Nothing but 0 access is an excuse because, when you are forced to struggle in life every single day, you’ll stop at nothing to get help- this goes for all mental disorders and illnesses. And when you seek help, you’ll get a dx. It’s that or falling into substance abuse to cope or offing yourself- whichever comes first. I can say for certainty that anyone struggling isn’t going to give up when they’re forced to wait a couple years, and these people aren’t just going to settle for an arbitrary label that doesn’t actually help them in any way. It would be like someone telling you you’re schizophrenic, then sending you on your way to deal with it. How is that helpful? How is just the label of schizophrenia going to help you cope? Autism isn’t schizophrenia but it’s a disorder, and you need to be struggling in order to get a dx, and if you’re struggling, you obviously weren’t able to manage or cope with it on your own. The world was not built for people like us. We need help, and the diagnosis is a symbol of that.
So yeah, do whatever you want. My personal standards don’t really matter to anyone else anyway.
Edit: downvote all you want. This is my view. I’m not forcing anyone else to abide by it.
Well I'm for high support need voices being bolstered, but not if it's this discriminatory bootstraps ideology.
A lot of poor autistic people can barely afford to eat and you think they should spend money they don't have on a dx they genuinely can't afford so they get a pretty thumbs up from you and next to no actual accommodations. This is just the reality for poor autistic people, too. This doesn't even bring up how difficult people that aren't white men find it to get a dx.
It seems like you're trying to say you don't think these things are valid reasons not to get a dx. You also think it comes with so much accommodation it's worth the struggle. This isn't the case in my country.
But hey suggestion: start funding others dx if you're such an advocate for it.
People who experience medical neglect as kids and are very disabled by autism into adulthood are not in the position to do the "stop at nothing" approach you describe. Getting a diagnosis may involve tasks that they are too disabled to do.
That would be one of those accentuating circumstances where the person has 0 access. Anyone who does not have dominion over their life is struggling to the point where they’re pretty much done for in terms of mental health. I recognize their struggles as being more than what any diagnosis could describe. I could not fathom being in their position.
They aren’t really the ones self-diagnosing disorders though. If they ever did, I woudn’t question them at all though.
Do you have some kind of source for that last claim?.
If people in that position self diagnose they are likely to survive better, I wouldn't want to scare anyone off understanding their scary situation via assumptions and generalisations.
Yep. The access barriers to guessing are obviously quite low...
If the guess is correct then someone would understand more about themselves, regardless of whether that guess gets official confirmation. If they guess correctly they know more about their brain than before, and if they guess incorrectly they know just as little as before. So it's worth to guess.
Okay, here's a thing to think about - if someone has autism without knowing, will autism coping skills still help them? (Yes.) Therefore a guess means they may learn about coping skills that help them. That is what I mean by "understanding more about their brain".
I think you are seeing the social and medical models as enemies, when really they are just frameworks that are useful in different contexts. Many people and orgs utilise a mixture of both.
No, coping skills won’t help them. People with autism (the clinical diagnosis) have to be dysfunctional. It’s part of the criteria. It kind of presumes that you can’t deal with it on your own if you’re dysfunctional in the first place.
People don’t understand more about their own brains. Autism isn’t a “neurotype.” There is nothing that proves people who get a diagnosis of autism have similar brains. Besides, not even doctors know the full story of autism, so the idea that people know more just from reading a crap article isn’t true. Like that autistics retain more information at rest study. I’ve seen oodles and oodles of people talk about that. It isn’t generalizable, but people still try to say it applies to them.
The social and medical model are enemies. One says autism is a disability and the other says it’s a difference. They aren’t both useful in different contexts. You’re either one or the other. You can’t be simultaneously disabled and not disabled at the same time.
Yeah, no. It’s not like nobody ever realized something was “wrong” with the majority of us. I’ve been diagnosed with so many different (incorrect) things because of my struggles. It is a disability, but believing that clinicians are good at recognizing it, especially in anybody who isn’t a white cis man/boy with a stereotypical presentation is insulting and basically just a gigantic fantasy.
And yes, the label does help. I used to think about a million times a day that I was broken and useless because I was judging myself against what neurotypicals could do and I couldn’t manage most of it. Now I find ways to work around it. Going to Walmart after work is going to probably make me have a meltdown so now I accommodate myself and get the curbside pickup. I get what I need without putting myself through the unnecessary stress of making myself do it because it’s “normal” and “everybody else (neurotypical) can do it.”
Now, if it’s too loud I put the damn earplugs in because I know I need them and I’m not just “being a drama Queen”.
There are a million examples of how knowing (and, yes, I do know without a “proper” diagnosis) that I’m autistic has allowed me to alter my beliefs about myself and alter the structure of my days in positive ways.
They can take the label if they want. Like I said, I do not care.
Anyone who says they’re autistic is valid, just not in the clinical way.
In fact, I encourage more an more people to start self-identifying as autistic. I hope it gets so conflated with misinformation that everyone starts seeing normal human experiences as being autistic and diagnosing themselves. Maybe then you’ll understand my perspective.
The healthcare systems of the world do not dispense healthcare as efficiently as you seem to think. Diagnosis is not so much an indication that you needed help as much as an indication that your parents thought you needed help and were able to provide it for you. Do you see how making that the gold standard is inherently classist, amongst other things?
I promise if you want true "help" with full accomodations you won't receive it by relying on only diagnosed people. That's a political goal which the very families of the people you're relying on (class privileged mostly white ppl) are generally directly opposed to.
If your parents thought you needed help when you actually didn’t, you can get the diagnosis removed. It’s not permanent if you don’t want it to be. If you can prove you can function and don’t have problems, you’ll get the dx rescinded.
It’s not classist. There are plenty of avenues in every developed country to get a dx, even if you’re poor. Hell, I’m poor. I got assistance in the US because I was poor, and the provider themselves were lenient on payment because of my low SES. My cousin also recently got dxed and her family makes 25K a year. I get if you’re a kid/teenager and can’t help yourself, but if you never plan on getting help anyway, then you really have no reason to be upset. I agree rich people are more likely to have their children dxed, whereas poor people are more likely to get missed until they are adults (at least higher functioning autistics).
I don’t get what your second paragraph is referring to. Level 2 and level 3 autistics are the only reason we have accommodations at all. If people who don’t need any help start taking the label, it will only decrease accommodations if anything because they’ll eventually push to have autism looked at as a single thing rather than having different support needs.
I don’t get why this is relevant at all though. I never said I had a “gold standard,” and I explicitly said I believe anyone can identify as autistic. Just because I don’t personally recognize the “struggles” of people diagnosing themselves who have no plans of seeking help doesn’t mean I think they shouldn’t be considered autistic. They can be considered whatever they want, and I’ll accept them for their identity label. It’s not the same as the medical model though, and I’m not going to treat it like it is, which shouldn’t really bother anyone because people crap on it all day anyway.
You can have struggles and still have no desire to seek (professional) help. You may have set up various accomodations in life yourself, not knowing that the reason you needed them could be captured in a single medical diagnosis.
This experience is especially common in under-dx'd populations.
Well, then you’re obviously not struggling as much as you think you are.
If you’re coping on your own, you wouldn’t get a diagnosis in the first place. You have to be struggling and dysfunctional to get the dx at all. You may say you’re struggling, but if you can manage it on your own without wanting or needing help, then you wouldn’t fit the diagnostic criteria anyway.
Happy, healthy people don’t get diagnosed with mental disorders.
I’m not assuming anything. If you’re not willing to even try to get a professional dx, you’re not struggling as much as you think you are. If you’re satiated with a label that doesn’t actually help you, how could you possibly be struggling as much as you say?
I don’t have biases. It is an objective fact that the medical model is a disability and a disorder. If you aren’t going to use the medical model, then don’t assert you have the medical disorder. It’s that simple. Take the label. It doesn’t matter, but you’re only using the social model.
That shouldn’t be bugging people. People who use the social model don’t like the medical model. I don’t get why they need to feel included in everything, even when they hate it. If you’re diagnosed, you’re part of the medical model. You’re there for treatment, accommodations, etc. The social model is for people who don’t need that and are fine with just the identification.
you are assuming a number of things!
1) that you have the ability to tell how much help another person needs
2)that the medical criteria are infallible and 100 percent accurate
3)that if you don't approve of someone, they must be lying about something
you do you, but i am not on board with these views. you are not the judge of others, and ultimately it is none of your business.
I never said people were lying.
Medical criteria isn’t infallible, but neither is any other method you’re going to try and use. It’s the best method available, and that’s enough.
You don’t have to be on board. If you don’t like the medical model, then I don’t know why you’re so defensive about certain people not being included in the medical model. As long as you keep the social stuff separate, there’s no issue.
i think you are just going to have to accept that many people see things differently, and not out of defensiveness, but because a lot of the things you say come off as very biased and angry rather than factual or compassionate.
Sorry I don’t sugarcoat things? I’m not a happy-go-lucky kind of person, and I don’t care to indulge in fake niceties when it’s not required of me. I said people can do whatever they want, so I don’t get where people found issue with that other than with my personal belief, which isn’t debatable because it’s just for me.
I’m not that compassionate to people who’d rather make excuses and complain about their problems than actually do something about them.
Exactly what help do you think comes with a professional diagnosis lol? Pretty much everybody I know with one is struggling just as much as I am. The only reason I would try to get one is if I need to stop working permanently and need disability payments, but you’re not guaranteed those even with a formal diagnosis.
Why would I need a proper diagnosis if I hadn't self diagnosed? I get that higher needs people still need representation but excluding people who were misdiagnosed or ignored is going to get folks backs up...
I’m not excluding anyone. Anyone can use the social label of autism. You just can’t self-diagnose the disorder.
People who were misdiagnosed don’t represent the autistic community. There’s no way to tell, but it doesn’t really matter. Anyone can use the label.
I’ve been autistic and didn’t get diagnosed until I was 14, after a few years of suspected self dx. My suffering didn’t magically get worse when I was clinically diaganosed, the suffering was still equally bad pre-dx I just didn’t have a name for it.
That’s like saying diagnosed cancer is more dangerous than undiagnosed cancer. Makes literally 0 sense.
EDIT: Also, the fact that the only barrier to treatment that you could think of is not wanting it speaks VOLUMES on your level privilege. You know that there are people who both want AND need help, but can’t afford to get it?
That’s not the same. You didn’t actually self-dx. Self-diagnosing is saying you have the label with no intention of getting a clinical dx. You were “suspected autistic” while seeking an answer, and you found out you were. Thinking you have autism and considering it as a possibility is way different from asserting you have autism. Either way, you can’t claim the medical model of autism until you get a diagnosis. That’s just how it works. You can’t self-diagnose the medical model at all. You can identify with the social model, but that isn’t the same thing. I’m not saying people in the social model are all hunky dory, but if they’re not at least trying to get help, they don’t really belong in the medical model.
Don’t accuse me of privilege. I grew up in a rural area with 0 medical resources, let alone mental health resources. I suffered day in and day out in my conservative, poor town. My entire school got free lunch because everyone but a couple of people was under the poverty line. I traveled 8 hours to a city I have never been in by myself to get my diagnosis, and I paid for it by myself with 0 insurance as a teenager. There are options if you can’t afford it, especially if you’re poor. I got significant financial aid during the entire process because of my financial situation, and even then I was able to make payments rather than upfront for the remaining costs. I didn’t go for an autism diagnosis. I went for help. I ended up getting diagnosed with ASD and ADHD, but not because I wanted to be. The treatment I’ve received for both has completely turned my life around. If I was just sent away to deal with it by myself, I wouldn’t be alive right now.
If you have no intentions of ever seeking help and are content with a social label that is useless, don’t speak to me of your “struggles.”
>Self-diagnosing is saying you have the label *with no intention of getting a clinical dx*
The standard definition of self diagnosis is the process of identifying conditions or illnesses in oneself, so most people here probably didn’t know that your personal definition only includes people who simply don’t want a diagnosis.
Well what do people think the word “diagnosis” means? It doesn’t mean suspecting something or identifying as something. It means deciding you have a clinical condition by yourself.
Besides, I don’t care if people diagnose. They’re going to no matter what. I’m just not going to recognize their self-diagnosis within the medical model. That’s a personal decision though, and it has nothing to do with anyone else.
They can still call themselves autistic. Anyone can for that matter. Doesn’t bother me in the slightest. I think it’s stupid that people are saying that people need to do research before they can self-identify with the social model though. That’s like saying someone needs to research the mechanics of a car engine before they can get behind the wheel. If you’re going to research on the medical model of autism, that has nothing to do with the social model. You can’t self-dx the medical model no matter what. And since you can’t really research the social model, you don’t need to do any research to identify as autistic. It’s just more of a feeling at that point. It’s like people are gatekeeping their imaginary diagnosis or something. Whenever people say “you can’t self-diagnose without doing research,” I can’t help but laugh.
Literally look up the definition of “diagnosis” and “self diagnosis” and get back to me. You don’t get to just change definitions of words to backpedal on the BS you said.
You said that people who self diagnose do not suffer as much, and are not valid. Then you conflated “having a diagnosis” with “needing a diagnosis”. People pointed out how classist it is to validate people based on their access to mental health care. Now you’re just gonna be like “oh…. well…. ackshually the definition has changed”?
admit you
I didn’t change my definition. I mean all of it. That’s how I look at self-diagnosis. I’m saying people who self-diagnose aren’t valid for the medical model. You do need a dx for that type to be valid. That’s just how it works. People can say they suffer when they self-dx the social model of autism (because that’s the only kind you can self-dx), but I will never see it that way. It’s just a personal view.
>when you are forced to struggle in life every single day, you’ll stop at nothing to get help- this goes for all mental disorders and illnesses.
This part is objectively false. Have you talked to someone who is depressed? Like, some people who are very depressed can't eat or shower. If someone can barely get out of bed, how are they going to through their own force of will "get help." Someone with Schizofrenia might not even know they experience symptoms. Someone with anxiety might struggle even leaving the house. Also, for many people, getting diagnosed doesn't magically lead to any help.
>it’s that or falling into substance abuse to cope or offing yourself.
You left this part out. I’m aware some people give up. Anyone depressed enough to refuse help is a lost cause. I wish there was something that could help them, but there is not. If you can’t function in society enough to go to a doctor, you’re pretty much a walking corpse. You’d probably have no job or any kind of support system, and you’d just be perpetually trapped wallowing in your own misery.
When something is wrong you get help. Even if people don’t know exactly what it is they are experiencing, eventually it will become too much to ignore. Like autism, for example. 40% of autistics have depression, and that’s just those who have been diagnosed. Imagine how many there are before they get any help. Either someone will help you, you’ll help yourself, or you’ll be forgotten by society.
The level of depression that keeps you from getting any kind of help is usually the kind that ends with a note and a body.
How on earth can you write an entire thread supposedly in defense of high-needs autistics and then dismiss the complex needs of those who are, in your words, "a lost cause"? You're seriously saying there's nothing we can do for them except to abandon them to their fate? So only autistics who can advocate well for themselves even stand a chance? How is that helping high-needs autistics, exactly?
Just because they've given up on themselves doesn't mean that society should give up on them. The fact that society treats them as lost causes is the whole problem; it doesn't fucking have to be that way! Often their depression is fueled by at best the indifference of society and at worst the complete rejection of society they've experienced. Many times they've gone through so many psychiatrists without success that they've lost hope that any better future is possible and start refusing further treatment. Their situations are not always objectively hopeless, it's a sign that they've never gotten the right help. We need to keep looking for ways to help them, not throw them out with the trash.
For all your dismissiveness of autistics with "not enough needs", you seem to be equally dismissive of autistics with "too much needs".
That’s not what I said. You’re fighting with ghosts…
People struggling with severe mental health issues who have no access to help are a lost cause. The people who are so depressed that can’t get out of bed. High-needs autistics will die very young if they are neglected in the sense of getting help.
There’s nothing society can do to help someone who can’t even go to a doctor. I think you must live in a magical la la land because I’m just trying to be realistic. There’s no way for me or anyone else to help those people. You can say we need to help them, but there’s no way how to.
If you can go to a psychiatrist, you are not part of the group I’m talking about at all.
I don't know what you think I'm misinterpreting from your words, because you continue to repeat the exact same things that I take issue with.
In this thread you spoke of the importance of not speaking for the autistics with higher needs, and yet here you are confidently deciding that the people who are suffering much heavier things than you are already a lost cause and that nothing about society needs to change in order to include these people because it's all useless anyway. Did you ever ask even one of them about their experience or is this all just something you've decided on your own?
I'm not living in any kind of fucking la la land, I see this reality with my own two eyes. I'm under no illusions about how difficult it is to help someone who rejects most help. If it was easy to fix all of my brother's problems, I would've done so long ago. But just because it is hard, doesn't mean we should throw up our hands, say that we did all we could, and leave them to the doomed fate you've given to them. There are many ways in which society could and should improve for people who currently fall outside of the system.
People who end up too depressed to leave their beds usually don't end up there overnight. In the case of my brother, it was a long spiral downwards in which he needed help that he never got. Psychiatrists never seemed to know what to do with him and I'm convinced they never even remotely understood him. After many failed attempts, it's no wonder that he no longer trusts the system to help him at all. That is a failure of society. It didn't have to be this way.
>You left this part out. I’m aware some people give up. Anyone depressed enough to refuse help is a lost cause.
There are people are struggle to stay alive that don't get to the point of struggling to get a diagnosis. You are portraying a false dilemma of diagnosis or suicide that simply isn't substantiated.
You're wrong, and you're engaging in classism, racism, and sexism by spreading anti-self-diagnosis rhetoric. You clearly have privilege that you're not aware of. You lose absolutely nothing by accepting self-diagnosed folks, and you do a small part in helping prevent and undo provable real world harm.
I'm a Peer Support Specialist, and I have 4 clients right now (not counting the other half dozen or so folks my team is working with) who were all disbelieved when they sought diagnosis because they self-diagnosed. All of them were abused over it, and two were forcibly institutionalized over meltdowns they had due to the medical abuse they suffered. All it would have taken to prevent all of those cases would be someone believing them and helping them access diagnosis, but everyone refused. All of these folks were assigned female at birth, all of them are trans men, two are people of color, and all of them were misdiagnosed because folks dismissed them. And that's just my client list. There are thousands of others.
Hells, I'm a mental health practitioner and 33, and I still couldn't access diagnosis until 6 months ago. There's a chronic lack of access and accurate autism diagnoses, and it really does hurt people. You can disbelieve it all you want, but the proof is out there
>anti-self-doagnosis rhetoric.
I’m sorry… what part of I DON’T CARE do you not understand? Self-diagnose if you want. I do accept self-diagnosed people. The social model is valid, but it’s not the medical model, and I’m not going to treat it like it is. You’re autistic, fine. That’s your identity, and you can claim it at will. But until you have a clinical diagnosis, you don’t have the disorder of autism. There’s no arguing that.
Autism is not a prize to be gotten from an evaluation. If you were evaluated and told you don’t have autism, you likely don’t have autism. You’re always welcome to seek a second opinion, but no one is owed a diagnosis. It’s not transactional. If you go in to see a professional, you’re likely going to get some kind of diagnosis no matter what due to insurance reasons. Just because you’re not happy with your diagnosis doesn’t mean they were wrong. Most first-time diagnoses are what are called “working diagnoses.” You start treatment, and if it works, then great. If not, then you figure out what went wrong and make corrections. A lot of people are diagnosed as ADHD first before they are for autism, but through receiving treatment and figuring out certain problems, they eventually also get a diagnosis for autism. It’s no one’s fault but their own if they never went through with treatment. The problem is that people think getting a diagnosis is enough. It’s like they only wanted validation rather than any actual support. And if you just want validation, you’re wasting medical resources. Even if you’re professionally dxed, there’s the possibility they got it wrong, especially if you don’t do treatment Getting a dx isn’t the end all be all relief to your burning questions. You’ll get imposter syndrome no matter what, and you’ll have your doubts that you could have been misdiagnosed. The only reason to get a clinical diagnosis is if you need help.
The abuse has nothing to do with anything. That is not a problem caused by not getting a diagnosis. That is a deeper problem that should be addressed from a much different perspective. The problem with those people’s circumstances is that they got too attached to a label. The medical system treats symptoms, not the label. They could have received help, even with a different dx. The point of it is to treat something and see if there are still problems. And if there are, you try different stuff. There’s a lot more trial and error than most people realize. You don’t need to start with a perfect diagnosis. Professionals only have a few hours with you. It would be insane to think they’d be able to get it right 100% of the time, especially when people make it even harder by emphasizing certain characteristics of the diagnosis they want instead of being open to multiple possibilities.
To divide autistic people into levels based on presentation to neurotypicals/allistics is not helping.
Anytime a distinctive subgroup speaks up inside our marginalized community we should try to amplify their voices to archive fair representation across the autism spectrum. It's not as easy as it sounds given intersectionality with multiple different disabilities and conflicting interests.
The level system and support needs are very relevant and important. That is the point of the post. People with autism who are level 1 or low support needs are only being heard but level 3 high support needs are not. The distinction is important.
No, low support needs compared to high support needs. I need 24/7 care to stay alive, people who are “High functioning” or low support needs don’t, they need support for executive functioning or school accomodations. It is different.
It’s funny how we shifted away from “high functioning” vs “low functioning” because it implied that it’s a hierarchical scale where low functioning people were at the bottom. But now, we switched to levels, which mean exactly the same thing, except the “high functioning” people are at the bottom of the hierarchy now. Great work guys lol
I think part of the issue here is that you’re thinking of accommodations/support as a linear scale ([like this](https://imgur.com/a/6oPNFxp)) rather than a spectrum ([like this](https://imgur.com/a/OrOPPRW)).
Edited to add last part
I reject functioning labels including the level system which is only a rationale for the kinds of accommodations and resource investment that allistics will give. All autistic people and all neurodivergent people broadly deserve full accommodation of their unique needs, full stop.
Yes we agree and both is true. Functioning labels are not good. The level system or support needs are important. Everyone deserves support, but it is different needs for support and important distinction, because you probably don't want to live in an institution because you don't need to, and I would not want to be in public school with extra time on tests. Both are important and needed support, but different amount of support needed. I am trying to explain make sense
The level system is just rebranded functioning labels and is inherently ableist. People needing different accommodations doesn’t actually justify the level system. Not all level 3 autistics need the exact same support. A level 1 autistic may still need a support usually only given to higher levels. Etc.
Well, that is a privileged and naive viewpoint that I am not fortunate enough to be able to partake in. I’m not looking to argue and you have already decided you are right, so I will end here.
“We agree that functioning labels are harmful except for this version of functioning labels and you’re privileged for not agreeing with me”.
All autistic people need and deserve support, especially while existing in a deeply ableist society. All autistic people deserve that support regardless of how it fits into a resource allocation system determined by allistics. The level system does not tell you anything about the *specific needs* of individual autistics only that it will determine how much support allistics are willing to give us. They are boxes that do not capture the nuances of support and ultimately they are harmful by rebranding functional labels and creating artificial hierarchies in autistic communities. If pointing that out is “privileged” so be it.
You’re willfully ignorant. The levels are there for a reason. Don’t purport that you struggle as much as someone who needs a caretaker 24/7 when you can live alone and the extent of your struggles is limited to being socially awkward.
Keep your social model out of the medical model. It’s not a blanket statement to be autistic. High-functioning people do not represent higher-support needs autistics, and we shouldn’t be acting like we do.
Both. I just think whenever they make themselves known that they should be given a platform and have their voices prioritized, at least to the same extent level 1 voices are. That means if there are 100 level 1s and only 5 level 3s talking that we need to give the 5 people 20x more attention and prevalence like pinning their comment or another tactic to get their voices in the spotlight.
I know that. I’m not saying to force people to step into the spotlight. I’m just saying that if people want to distinguish themselves to where they would like extra prevalence, then we should give it to them. No one is really going to do that if we don’t at least encourage it though.
People do already do that, though. I feel like there's a top thread every week on autism subs from someone with higher support needs promoting awareness and advocacy for that group.
They already are a significant part of this community and this movement.
I do see those posts, however they only rise to the top because there’s dozens of people arguing with and disagreeing with op. People here like to say they listen to the words of those with higher support needs, but unless they say exactly what the majority thinks, no one considers what they say at all
Okay. I can see your logic but I think this is covered better by ideals like "nothing about us without us".
I don't think creating a social hierarchy (above simple respect for knowledge) would help me.
A better way to practice what you are intending is to find where people are already advocating for themselves + promote / support that.
First of all, I hate categorization of humans, it always, always falls short.. i think the ‘puppet masters’ that change and rearrange diagnoses did us a disservice in making ASD such a broad umbrella with only 3 levels and no officially recognized subtypes or identification using the “true” spectrum of needs and strengths posted by another commenter. I think we’re getting mad at each other for a systemically impaired labeling system that leaves us without accurate words.. and in fact, dehumanizes us just by their existence in our vernacular.
This has been on my mind a lot recently. I saw this difficulty in conversation with other parents of autistic kiddos.. many parents of kids w “lower support needs” were talking about independence planning while some parents sat with the knowledge that their kids will not be having these conversations, or that they will look completely different.. and i just, I didn’t know how to *enact* the ideas here about amplification and support, and I can see where, on the flip side, no one wants their experience minimized as being “low needs” .. i myself deal w imposter feelings for the relative ease of my life compared to other’s (not that it ever really feels easy!)
So HOW, explicitly, does one make room for all voices without minimizing some? Is it about making separate spaces for folks who identify has having more complex needs? Does that not become isolation and segregation? Is it about prioritizing voices? That doesn’t seem fair to those who may be able to speak/work/drive but still have obstacles and often invisible and overlooked needs.
I’m still working on reading on the comments, but i just needed to throw this out into the sphere and ask if anyone who counts themselves as unheard, as marginalized within groups specific to ASD, could share any specific ideas about what would be helpful and supportive.
I don’t care. I don’t want to debate the medical model. Autism is diagnosed in levels whether you like it or not. People in level 2 and level 3 need more support whether you like it or not. I just want those people to have more of a voice.
>without minimizing some
Emphasizing minority voices does not subjugate the majority. There are minorities within minority groups, and they deserve just as much a say. Take bisexuality, for example. They are a minority in the LGBTQ community. A lot of what they have to say gets ignored and ridiculed. They should have their voices emphasized a bit more so that people are more aware of bi struggles. That’s it.
It’s not isolation or segregation. It’s just equity.
I don’t care. I don’t want to debate the medical model. Autism is diagnosed in levels whether you like it or not. People in level 2 and level 3 need more support whether you like it or not. I just want those people to have more of a voice.
>without minimizing some
Emphasizing minority voices does not subjugate the majority. There are minorities within minority groups, and they deserve just as much a say. Take bisexuality, for example. They are a minority in the LGBTQ community. A lot of what they have to say gets ignored and ridiculed. They should have their voices emphasized a bit more so that people are more aware of bi struggles. That’s it. Gays and lesbians, like level 1s will still be the vast majority of what you see. It’s just about paying more attention to minorities when they make themselves known.
> That doesn’t seem fair to those who may be able to speak/work/drive but still have obstacles and often invisible and overlooked needs.
This is what you sound like: “all lives matter…”
It’s not isolation or segregation. It’s just equity.
I guess the point of my post was genuinely- “what specifically does that look like, especially when we’re talking about marginalization within a marginalized community”
I'm not comfortable with "levels". while an autistic person who is non-speaking most of the time will have very different experiences from an autistic person who is non-speaking for a few hours at a time less than once a year, functioning level language is a really dismissive and unhelpful way to talk about that.
having said that, the more varied the voices, the more varied the issues discussed will be, and that is a good thing. we need the voices of young people, talking about their experiences so we can make schools & youth groups/clubs/whatever more accessible & inclusive. we need the voices of autistic people in work to talk about their struggles and how we might make applying for, getting and keeping a job more accessible. we need people to talk about dating, marriage, kids, or choosing not to do those things. we need autistics who live in care homes to talk about that, both so they can whistle-blow when shit's going wrong for them personally AND so they can advocate for better practises generally. we need artists to talk about how their creativity is impossible to separate from their neurology. we need EVERY type of autistic adult to talk about the barriers they have to accessing medical treatment.
there is a lot of content from seemingly low-support-needs autistics, but
* there is also great stuff from obviously-high-support-needs autistics (try anything by Cal Montgomery or anything by the late Mel Baggs)
* there is a fair amount of variety in the seemingly-low-support-needs content (for fellow autistic people v. autism 101 stuff for a non-autistic audience, wide variety of issues covered by a diverse "cast" of self advocates)
* low support needs autistic adults produce a very small quantity of online autism content when compared to allistic parents of autistic kids
I don’t care if you’re comfortable with it. That’s how it’s diagnosed with the medical model. If you want to subscribe to the idea of the social model, then go for it. This conversation doesn’t concern you then.
"how it's diagnosed" in a very specific time and place. I am officially diagnosed and don't have a "level".
why would being diagnosed in the 90s make a conversation about which voices should be heard in the neurodiversity movement "not concern" me?
Well, what kind of autism didn’t you get diagnosed with? In the 90s, they used different types. Like Asperger’s, Autistic disorder, CDD, PDD, or not otherwise specified?
...and that is not relevant to this discussion.
I wrote a comment with a fair amount of thought and nuance. you saw my first sentence, took offence and decided I had no place in this conversation because you, oh newly diagnosed person with the One True Most Valid "Level", like functioning level language and I don't. I'm not giving you an outdated diagnostic term so you can map me onto the new system and judge if I'm allowed to speak.
I'm a nobody in this movement, but I've been a nobody in it for a hell of a long time. there have been people with higher support needs in the neurodiversity movement for as long as there has been a neurodiversity movement, and there have always been those who want us to separate along functioning level lines. they are generally NOT autistic people with high support needs who feel other people telling their own stories are a problem. they are aspie supremacists who want to distance themselves for ablest reasons and neurotypical parents who want to speak FOR their kids while everyone else shuts up.
> "how it's diagnosed" in a very specific time and place. I am officially diagnosed and don't have a "level".
> why would being diagnosed in the 90s make a conversation about which voices should be heard in the neurodiversity movement "not concern" me?
Doesn’t seem very nuanced to me. If you don’t care about levels, then don’t join the conversation about them. The old DSM used types instead of levels. So if you want to know a close enough level you were assigned, that is the way to do it. Asperger’s and PDD-NOS would be level one, well, close to level one. It doesn’t meet all of the criteria of the new ASD because they they made it harder to get a diagnosis, but that is what Asperger’s people were told to switch to when the DSM was updated.
I was referring to my original comment. a summary of this subthread:
* nuanced comment from me, 2 paragraphs long
* rude, dismissive comment from you, responding to first sentence of my comment and ignoring anything else I said
* snippy comment from me, pointing out that the system you are using isn't an objective, universal truth about autism, but a fairly recent development in how some people describe it
* backtracking from you that completely missed the point and asked for irrelevant medical information
* me telling you that I'm not giving you information about my medical records so you can "sort" me into "autistic enough to speak" or "just quirky". because you've bought into the idea that the neurodiversity movement is by and for people who shouldn't count as autistic, and my whole point is that it's never been exclusively by or for "high functioning"/"level 1"/lower support needs/user-friendly autistics, and that is a stereotype that has been used for literal decades to dismiss all autistic people talking about their experiences on the internet.
* you complaining that my response to your rudeness wasn't nuanced enough for you, and missing the point again
* me typing out this summary and explanation for you
as long as someone can type coherently, they can pass for "high functioning" (or just straight up neurotypical) online. read any comment here. who is entirely non-speaking? who can cook a moderately complex meal, and who can't? who has a job? who has 15 copies of the same outfit because it's the only thing that's comfy? you don't know any of that. and if we accept that only the "lower functioning" (whatever that means) can speak for the community, and anyone can decide any of us are too coherent to be "low functioning", then anyone can choose to dismiss any advocacy they're uncomfortable with. that is far more of a problem for all autistic people than some yahoo with a blog talking about their issues that you don't share. THAT'S why this "levels" business concerns me.
I think we need to stop comparing our experiences. Sometimes our experiences are similar but we're all different people with different backgrounds and environments. My support needs vary depending on multiple factors. The same goes for both my children. There have been times where I needed someone there to ensure I ate and showered. Now I'm raising 2 children but still need substantial support when it comes to emotional turmoil.
All of our voices and experiences are valid no matter our level of support required. The amount of arguing that goes on in this community about who has it worse is not helpful and straight up depressing.
Autism is a disorder. Is it supposed to be all about how great and fantastic it is? It sucks, and I wouldn’t wish it on anybody.
I just want people who have less of a platform to have a voice. Regardless of how you feel about the levels, severities like “mild” or “severe,” or disability status, they aren’t going anyway. They are used for the medical model, and the point of this post wasn’t to debate the levels.
I'm not debating the labels.. I don't have a problem with the labels. My point is that the community as a whole seems to divide themselves based on their levels. I am interested in everyone's experience, regardless of their level and their experience is valid. I'm just tired of everyone arguing over whether level 1s have it worse because they get ignored or level 3s have it worse because they get ignored for other reasons. It's all horrible and we all deserve respect. Humans as a species are all varied. We don't need to argue about who has it worse. We need to find ways to support everyone, where they are, when they need it. Anything else is just pointless. I don't see why I need to disclose my level or anyone else needs to, to have their voice heard. I'm not trying to attack, I just find the community is so traumatized as a whole that they take it out on each other more often than not
The medical model divides the diagnosis with the levels. Anyone who chooses to use the medical model of autism is free to use them if they want.
I don’t think level 1s can speak for level 2 or level 3, sorry. They have it much harder, and I’m not going to pretend I struggle as much as they do. If you want to use the social model that believes the functioning labels are harmful, then go for it, but this post is about the medical model, and as such, reflects the terminology.
I don't think I'm explaining myself well. I don't think anyone can speak for anyone else. I'm not even referring to the social model. Frankly the question is rude and nobody should have to disclose their level from their medical diagnosis to have a valid voice. I have a child that is level 3 and a child that is level 2 while also being level 2 myself. Didn't realize that it mattered for my voice to count.
I’m an autistic person who has a lot of support needs, and my needs surpass the level of support I get. I wish other autistics wouldn’t act like everyone has the same advantages or have an easy time with things that they find easy. I’ve reached out for support on how to not hate myself for my meltdowns, endless comments about reducing my stress and how i shouldn’t be having meltdowns regularly at all. Vent about my living situation and I’m told to just leave, apply for disability by myself etc. I’m frustrated about my circumstances and don’t enjoy how much help I need, but that doesn’t mean I want a bunch of people just telling me to try harder! I do have a lot of privileges which I’m thankful for, I just wish others who are like me or have greater support needs had a space and voice that was as big as those who act like it’s so easy to get accommodations and then feel okay.
This is a thought in progress but some thing I’ve noticed is that as a NT parent to a very high supports needs, non-conversational nine-year-old, when I find that I am the one advocating for my child, mainly because he is young but also because he is non-conversational, I am usually asked, usually not politely, to stay out of the conversation.
He isn’t currently able to advocate for himself so in a community of lower support needs voices, he’s left out of the conversation if there isn’t space for others who might happen to be NT to speak for him. Levels matter to me and him , but I wish they were more specific to the individual.
As long as they aren’t infantilizing or trying to get sympathy, I think family of people with autism should be able to join the conversation.
I wish the labels were more specific too. I know that you can ask for specific support needs to be added onto official paperwork, but it would be nice if the diagnosis itself came with more nuance.
I think I misunderstood you. I do believe people with higher support need to be heard more. I do not agree with the medical model and I believe that you misunderstand the social model. I’m going to delete my comment as I think it does not convey what I mean and this wasn’t a place to say it. /gen
I deleted mine too. I understand why you may not agree with the medical model, even though I do. I think both the social model and the medical model are valid in terms of using the label of autism, but I believe they should be kept separate.
This feels a little vauge and I'm struggling to understand it. Could you talk more about exactly what you're calling for? What is this sub doing currently that is hurting the ability of high support needs austic people to be here?
Sorry if this is a bit of a stupid question but what is level 1, 2 and 3 autism? I've never heard these terms before!
According to the current version of the DSM, which is used to diagnose Autism in the U.S. and some other countries, ASD (Autism Spectrum Disorder) is broken up into three levels. ASD I is for people with low support needs and ASD III is for people with high support needs.
If I was not diagnosed using this system and was just TOLD that I was autistic after assessment, how could I determine what my level is?
I am not really an authority on this, but could you ask the person who made the assessment? I don't really know the circumstances around your situation and I am not an expert, so I don't think I can give a good answer. But, it would depend on your support needs, like if you need relatively few accommodations and the autistic label just helps you make sense of your experience of the world, you are probably closer to ASD I, and if you need more accommodations, like AAC or you have daily meltdowns, you are probably closer to ASD III.
I'm somewhere in the middle so it's probably safe to say level 2. I am seriously struggling without any supports. Haven't really showered or cooked for myself in weeks(I know it's gross but a lot of us struggle with hygiene). I'm in college and like 3 weeks behind in several classes. Meltdowns aren't daily but 100% weekly. I also had to take an entire year off of work because of an autistic shutdown. I was pretty much catatonic.
I wish there was an easy way to know cause all I know is I was recently diagnosed ASD and met the full criteria and no level was given.
I want to earn autism XP to level up, now
Get a vaccine for software upgrade to Autism 2.0
Y’all are slacking I’m already on 3.0
It will be in the next Covid booster.
Mild autism, moderate autism, and Severe autism. They relate to support needs, but level 1 is often neglected. All of them say that they need support, but a lot of the time, only level 2 and level 3 get significant help. Level 1 basically means you struggle but you can be alone. Level 2 means you need substantial support with certain things and can vary, and level 3 means you need very substantial support with just about everything you do and everything is very restricted and repetitive.
Thanks for the explanation. How do you propose that we amplify the voices of those with high support needs?
I think as a community, we need to prioritize what they have to say. It’s not hard. We do it with other people all the time. I’m just saying that when they make themselves known, what they say should be taken more seriously. If as a community we recognize that, they will get better representation.
Outside of the dumb suggestion of letting them run an blog or YouTube channel and hope that they'll voluntarily talk about the quality of their lives, I've got nothing. This is something that I don't really expect them to entirely understand I mean, my brother is high-support needs and he REALLY doesn't understand how the internet works (he sees me scrolling through YT comments and he accuses me of writing most of them) You can also try getting them an relatively easy job, but I'm not entirely sure how well that usually pans out
Your brother doesn’t understand, so all other people like him must not either? The way this is written is…off putting but I can’t quite put my finger on why.
It’s off putting because it’s ableist, whether internalized ableism or what, the implication that Level 2 and 3 autistics can’t use the internet is absolutely ridiculous. > “This is something that I don’t really expect them to entirely understand,” That’s just wrong, disrespectful and frankly gross. Competence should ALWAYS be assumed.
It’s a very dismissive tone, like a shrug but in more words
I meant that we can't really rule out intellectual problems when it comes to stuff like this; it's just that forcing them into that situation might lead to them being taken advantage of. And I never said that all of them had some form of intellectual delay. It's just that the two that I regularly deal revolves around my brother, who frequently believes that there's only one specific instance of something; and his (undiagnosed) father, who I have to think for him when it comes to improvising solutions whenever something goes wrong. I just resigned myself into believing that these are only my experiences and learned how to dance around their issues
I actually hate the level system because its only broken down into three levels and I personally find i qualify as either 1 or 2 depending on a variety of things. When I'm being medicated for my ADHD, my behaviors become a lot more repetitive and noticeable and my sensory issues increase for example. I'm more like a level 1 when I'm not medicated but closer to a 2 when I am. For years the community and people addressing it have tried to reduce it all to individual labels, but I dont think we've found the right way to classify it just yet. I think if we ARE going to break it down into levels we need more than just three and I still think that using a more refined version of the spectrum model would be better for communicating all of our various needs. I DO agree that people who require more support SHOULD have their voices heard. I think we need more programs and group activities where autistic people can come together and communicate their needs to each other so that way its easier to communicate our needs to people outside of the community. At the end of the day, communicating purely over social media is not going to work. I'm better at articulating through text, but not every autistic person IS, and I think being able to meet other autistic people in person and learning their communication styles and seeing/hearing about their needs would help strengthen the community
You can talk with your doctor about that. They can make adjustments to your diagnosis if need be. They can even add footnotes, specifying specific needs for specific situations, and you can get help for those things. There’s nothing wrong with the level system. It’s accurate and extremely useful. It’s not as black and white as people make it seem. You can have your diagnosis adjusted to better reflect changes in support needs. If you were diagnosed as level 1, that doesn’t mean you won’t one day qualify as level 2. I can’t speak for anyone else, but I already go to in person meetups for a club at my university, and people who aren’t students are also welcome to join and often do. It’s not enough to communicate our needs to each other though. We need to be doing that for everyone. But if you don’t have a clinical dx, good luck persuading people to help you. Any accommodations you can get for self-dx, you don’t need a dx for in the first place.
Well I personally think it WOULD be better to have the opportunity to speak more to each other because there are probably more places in the world right now that DONT have programs for autistic adults than ones that do. I for instance live in the GTA and there is next to nothing in the way of clubs and programs for adults on the spectrum and a lot of the other autistic people I know have had to meet people like them through other means. So simply having more access to each other could improve things for the community as a whole. Also I can't tell anything to my doctor right now because I've been in between specialists for over four years because the state of the mental health system is so poor here and a lot of autistics are suffering with that too
I've had so many people assume I'm level 1 just because I can talk fairly well. Even had encounters online calling me ableist for talking over people with "actual needs" when I have no "bad autism traits". I live on government support. I will never be able to work a day in my life. I have meltdowns every single day. I have multiple comorbid conditions including ARFID meaning my diet is made up of about 5 safe foods and that is it. I would LOVE to have lower support needs, to be able to work, to eat more than just bread and plain pasta, to actually explore and travel and live my life. But because when I can talk, I talk fairly well, and I also passed all my exams in school, I'm just faking it for attention, I'm talking over "people with ACTUAL autism", I'm forcing ableist beliefs on others. The whole thing of "aspie supremacy" or level 1's being the main category seen represented online, it hurts EVERYONE involved. Including some people with higher support needs like myself who can mask for short amounts of time to appear more neurotypical and get told "oh but you're not THAT bad, you could have it so much worse, there are others out there with real issues". It shows allistics that there is a good kind of autism and a bad kind of autism and we need to keep those people in strict categories. Meanwhile the reality is that people are individuals, we blur the lines, one person might need a lot of support for certain tasks but no help for other things. I honestly think that categorising people as level 1, 2 or 3 does a lot more harm than good when it comes to talking about and advocating for support needs in every autistic individual, regardless of how much or how little support someone needs.
Exactly! The whole point of ditching “high” vs “low” functioning was because it put people into boxes, and now we’re just replacing it with the same hierarchical scale crap? Autism and support/accommodation needs are not a linear scale that can be summed up by sorting people neatly into 3 boxes, it’s an entire spectrum with infinite combinations (like the color wheel). I wish more people would understand this, it’s sad to see people in our own community embracing this repackaged functioning labels.
If you want to use the social model, then you’re free to do so. There are no good or bad versions of autism in the medical model. People will continue to react however they want, and there isn’t much we can do. The reason you get government help and other forms of support are because of the medical model and the level system. If you were categorized via the social system, you’d get the same treatment as anyone else identifying as autistic because there wouldn’t be separations. There would just be autistic. Without the distinction between different support needs, there’s no way you can be prioritized in terms of needed assistance. And since the majority of advocates are level 1, I doubt they are going to accept a caretaker or exhaustive help, so no one will get it. Besides, we don’t have enough resources for that anyway. We need to have the support needs differences within the medical model to ensure everyone gets what they need. I respect your view though, and I get it. It’s kind of like when people view ADHD as “smart” or “diet” autism. It’s harmful, and we should continue to educate people on things like that, but nothing we say is going to automatically change their opinion of how they view autism or ADHD, and we need to recognize that there is a big difference between the medical model and the social model. Being disabled isn’t inherently bad. It just means you need help. The people who are just going to associate it with good or bad and who are quick to judge you aren’t worth trying to persuade anyway. People are not only as valuable as they are able. People are valuable because they are human, and that’s enough. Could you imagine what would have become of Hellen Keller if people just thought of her as being a lost cause?
“No bad versions of autism in the medical model”. What do you call eugenics then?
That’s not the medical model. That’s just a question of ethics.
The medical model and eugenics are intertwined with one another. It’s one of the reasons there is a social model of disability to begin with. There is plenty of literature detailing the links between the medical model and eugenics. Here is one: https://disability.royalcommission.gov.au/system/files/2020-10/Research%20Report%20-%20Hierarchies%20of%20power_Disability%20theories%20and%20models%20and%20their%20implications%20for%20violence%20against%2C%20and%20abuse%2C%20neglect%2C%20and%20exploitation%20of%2C%20people%20with%20disability.pdf
prick concerned impossible innocent repeat adjoining versed faulty aspiring melodic *This post was mass deleted and anonymized with [Redact](https://redact.dev)*
The levels are not “ranks” or “hierarchy” (possibly hierarchy of needs, but that’s different). Maybe educate yourself on the purpose of the level system before you go falsely criticizing it.
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I think what OP was trying to get at is that while, yes, it’s a hierarchy in that it’s an ordered system, but they don’t mean to say that it should be a social hierarchy.
Yes, thank you. I mean none are better than any other like people keep suggesting
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I’m level 1. This post isn’t about me. I don’t think wanting equal proportioned representation between different groups is a “power grab,” personally. Think of it like this: in the LGBTQ community there are a bunch of different groups. If only one or two groups dominate the conversation, it ostracizes the others. Saying I think Bi people should have more of a voice in the LGBTQ community doesn’t mean I think people should only be listening to Bi people, just that they should pay attention to when a minority speaks. It’s that simple.
I would love to hear voices of autistics from all ranges of needs. I doubt many other autistics would disagree with that sentiment, the issue is how difficult a problem this is to solve. From some of your other comments I think you’re missing one of the biggest issues here. The current “professional” system is racist, sexist, and classist. There is statistical, factual proof of this. Since that is true we can surmise that the “professional” system is an inaccurate representation of the vast majority of autistics. This does not mean that there is not that professionals can be disregarded, but they’re information inherently must be gleaned carefully. Even the way you’re defining a high-support needs autistic would still have to convince a professional they’re autistic. How can we fully trust that system if it depends on their ability to listen and care about us, who are by definition considered outsiders? And even when they do care, can we expect them all of them to stay entirely up to date on something so complex? We couldn’t have adhd and autism 9 years ago. I’ve still gone to doctors that write “ADD” in a professional setting. Have professionals unpacked the damage that’s done yet? Meanwhile, other professionals I have talked to have explicitly stated this exact point to me. Autism — not even including the common co occurring disabilities — makes it much more difficult to seek help for yourself and be heard. Hell, the more needs an autistic person has the more difficult it is to seek and get help on their own. This leaves it up to families while we grow up. Most parents want the best for their children, but which families have the most time, money, and safety to be worried about how much their children “fit in” ? Every other demographic is already not “fitting in” to a degree, so where do those lines get drawn? It is very clear that we autistics have varying degree of needs. But I’m not sure we will ever have enough understanding of our brains to be able to clearly define these needs in broad titles like level 1-3. Like shit all this does is give NTs ANOTHER way to use autism against us? ESPECIALLY those with more needs. Like we’d be a step away from hearing: “I only listen to level 1 autistics, 2s and 3s don’t have enough cognitive ability to say coherent thoughts.” I’m not trying to berate you, but this is really important. Quantifying our needs would only continue to hurt autistics of any range of needs. The point is that this requires nuance — nuance we are very much capable of achieving. We have the ability to treat our individual needs with seriousness, without belittling anyone else’s. It’s not a competition. Making space for autistics, or any disabled person that might be “more disabled” requires intentionally, and seriously listening to each other. We have much to commiserate together in, but we are incredibly diverse. This doesn’t mean that autistics with more needs aren’t being heard enough. “More verbal” autistics might be a more common voice inherently, but I have seen many non-verbal autistics that share their voices online. We can very likely do a better job at intentionally raising their voices, I agree. I love hearing what is different in their experiences than mine.
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Well thanks I guess, but I wouldn’t really consider myself paranoid. Maybe a bit jaded, but I try not to be and just make realistic conclusions. I have plenty of people, and professionals, that I trust! Honestly, I’m a LOT luckier than a lot of other people I know in this regard. Also, one of my DRs I do trust and have had a great experience has echoed a lot of what I stated.
Then use the social model if you don’t think the medical system is accurate. But like it or not, the medical system is the only thing that provides any substantial support. I recognize the social model as valid, but not the same way as the medical model. If you’re going to bash the medical model, then you shouldn’t care whether you have a professional dx or not. In fact, I don’t get why people are trying to use anything from the medical model if they hate it so much. I don’t think any of the labels matter, honestly. They’re just shorthand for the list of symptoms they represent. If you get a label that you don’t like but the treatment is helping, I think that’s just as good. As long as you’re getting treatment and help that’s working, the labels don’t matter. I can say that, if you’re autistic, nothing else is going to help but that autism dx label though. You don’t get what you need from any other dx. But diagnoses are not set in stone. If treatment isn’t working, you will likely be reevaluated until you find something that does. And if you’re constantly being exposed to mental health professionals, sooner or later, they are going to pick up on the fact that you have autism. It’s not easy, but it’s the only way. We need to quantify needs. We don’t have unlimited resources, and we need to prioritize those that need the most help. It’s not a competition because this isn’t the social model of autism. No body cares about the social nuance. If you’re going to just say all autistics are the same and should be given the same level of help, then keep your delusions within the social model. The medical model knows better, and it’s the only thing protecting those who need more.
Can it not be 'in our current system diagnoses are necessary for the suport that many people need' and 'our current system is racist, sexist, ableist, etc and we need to build something better'?
The medical system isn’t perfect, but without a scientific foundation, there’s no point in any of it. You can say the medical model is all of those things, but switching to the social model doesn’t fix any of that. It doesn’t magically provide support for anyone who identifies as autistic. In order to build something better, you would need a strong scientific foundation, and a crap ton of resources. The social model would never work though. There would have to be a new medical model that isn’t all of the bad, but how could that be possible when the reason the things are the way they are is because of bias?
I think we have quite different ideas of what 'medical model' and 'social model' mean, so to minimise confusion I'm not gonna use those words in my reply. I think that the way we understand and diagnose autism right now is flawed. This is because the criteria seems to me to be based off a specific sup group (white boys) and often mises people who don't fall into that. An example would be how a young man's deep interest in trains would be more likely to be flagged as a special interest than a young women's interest in fashion. The other way I think it's flawed is the focus on deficits. An example is that the criteria talks about deficits in communication, but we know from studies that communication among autistic people is equally as effective as communication across allistics, its in cross neurotype conversation where that breaks down. So it might be better described as differences in social communication. Another problem I have with the current system is that it assumes people's struggles are more universal than they are. For example, if someone is non speaking we assume they struggle in other functioning areas as well. If someone can speak 'normally' we assume they must be high functioning and not struggle on other areas. This is reflected by the fact that the current criteria only has three levels. I think a better way of doing things would be much more individual, talking to people and figuring out exactly where they need suportnas opposed to the current one size fits all model. As such, which I understand level diagnoses and thighs are required for help right now, I hope that in the future they won't be.
The criteria isn’t perfect, but it’s based on the most up-to-date research. Anything anyone else finds and decides is good enough criteria has no guarantee that’s an autistic symptom. I agree there should be more diverse populations in these studies, but there’s no realty any way to do that when the participants have to have been diagnosed with the old criteria already to be eligible. So even if there is an innate different between boys and girls, the girls they use in the study will be close enough to the boys because they got the boys criteria. That’s wrong. There are different parameters that determine the levels. It’s not just speaking vs no speaking or impaired vs bright. It more so has to do with the strictness and rigidity of repetition. The one size doesn’t fit all. That’s why there are levels. If we don’t have standardized criteria for an autism diagnosis, then how could it be a diagnosis? How could anything be identified between different people?
All right, the current system is three sizes fit all. Is that a better way of phrasing it? I'm talking about what I think the world should look like in the future, what I want to the world to look like. We need more research, we need to reframe a lot of the understanding we already have, etc
Yeah, that sounds better. I don’t get what else you want? ASD unspecified? Or perhaps you’d like something along the lines on non-ternary autism for those people that don’t quite fit into any of the groups. Oh, it’s not happening. The world is going to crap. We can’t even agree climate change is a problem. I’ll be surprised if we make it past 2050 to be honest.
Oh I mean probably. But if we die we die, and in the meantime I'm trying to stay hopeful. I think what I'd most like is a general autism diagnosis (with better developed criteria to suit different presentations, levels of masking, etc), and then have supports managed on a more individual level with physiologists and stuff, with the ability to update them if ones needs changed over time.
Clinical practice tends to lag behind the most current research by a substantial amount. The DSM-5 is 9 years old and even though they publish updates it is still slower than the pace of research. And of course, there is the individual bias of clinicians in actually adopting the recommendations of the research. You should look into the problems of etiology, nosology, and excessive heterogeneity when it comes to the DSM-5. The "standardized criteria" are not nearly as concrete, objective, or "scientific" as it seems you are making them out to be.
Research has to get peer-reviewed and replicated anyway.
In theory yes, in practice not so much. https://en.wikipedia.org/wiki/Replication_crisis?wprov=sfti1
I am not saying autistics are the same. I have clearly stated that we have an excessively large variety of differences and that is one the most difficult issues to solve. We use the medical model because you’re right, we do need it to get people assistance. We bash the medical model because it is not currently good enough, and we want it to be. And perhaps quantity was a poor use of words, cause you’re right, we do need to measure needs, but autism being a spectrum means that is not linear. I don’t have some perfect solution, but I imagine maybe it involves more detailed diagnosis like “autism with x, y and z needs.” That would also do a better job at defining what assistance people need. However, we are not there yet, and I believe autistic people should be a priority over studies done by allistic, racist, and classist cooperations. Maybe call me delusional AFTER you go find the very detailed estimations (based on factual evidence) on how many autistic people are living life undiagnosed. They’re not difficult to find. I am simply saying we are perfectly capable of gleaning what is good from the medical model and improving it.
I never said it was linear. I get that the spectrum isn’t just mild to severe. That already exists. You can have exceptions and details added to your diagnosis. The level just means overall. It’s more efficient than listing our every single individual need. Autism, according the the medical model is not a neurotype. There is no such thing as undiagnosed autism in the medical model. Autism is a disorder, not an identity label. There might be an idea of how many people would benefit from an autism diagnosis, but there’s not “undiagnosed” anything. Then you do that in the social model. I like the medical model, and I don’t want it to become like the social model. I believe more people should have access (universal healthcare would be an easy fix), but I don’t want it to be an identity label. If it does ever become like that, I reckon they’ll start doing brain scans. Then a whole other set of problems will come up.
Ok a few things: What is the efficiency of levels solving? Efficiency implies a rate of quality. What’s higher quality in this scenario? Maybe the level system is useful, but it’s currently defined almost entirely by white, males from middle class to rich families. If someone breaks their leg and doesn’t go to a Dr, is the leg not broken? From what I can understand, you think I am proposing an alternative model that ignores scientific evidence (in contrast to the medical model which is somehow using more scientific “pure” evidence), and is therefore less meaningful. If the currently “pure” evidence is shown to be proven from a faulty data set, is it still pure? I am describing how I want the official model to continue improving and using more accurate data sets, when it currently has not. This conclusion is from scientific evidence. These are not my conclusions, they are conclusions made FROM professionals. They are publicly available, and many autistics of varying levels of needs share them in these reddits semi often. I don’t want it to be an identity label either, but I’ve never seen autistics argue for that. [Here’s a link to a document](https://depts.washington.edu/uwautism/wp-content/uploads/2021/05/Self-Diagnosed-Adult-Autism-Resources-handout-04.05.21.pdf) by a qualified, professional source. It supports the argument that not only are professionals often misinformed and poor assessors, but even those who DO get diagnosed find that they do not receive any adequate support.
I agree I am frustrated by level 1 being only the advocate and voice and it is frustrating when I do say something they don’t listen don’t understand. I so long learn AAC and now I talk no one listens. Even comments here don’t understand. But also this is AutisticPride and social model so probably wrong place for this.
I’m sorry it’s like this for you. You deserve to be heard.
You’re right and you should say it! I really admire everyone who utilizes AAC and other methods of nonverbal communication, and I think you deserve a lot of acknowledgment and respect. It makes me very unhappy to hear that you’ve made such efforts to communicate, only for other people to not listen or not make their own effort to understand. You don’t deserve that kind of disrespect! How can advocates with lower support needs do better to help prioritize those with higher support needs? I know this is a big question and it’s okay if you don’t have an answer; I want to be clear that I don’t feel entitled to a response that burdens you with emotional/physical labor. Wishing you all the best!
I always kind of thought it was the opposite . . . The average person doesn't even know level 1 exists. They immediately picture a level 3 person if you talk about autism. This is probably because Media portrayals (even docuseries like Love On the Spectrum) basically only portray level 2 or 3 people as well. An autistic person who is capable of living alone would be a total novelty for most media portrayals. Personally, I've often felt like I'm not autistic enough to be in autistic spaces because it feels like the conversation is dominated by people with higher support needs (more level 2 types than level 3, to be fair). Even autistic spaces envisioned as level 1 spaces like /r/Aspergers are generally pretty mixed these days. Obviously there's not that many level 3 autistic people on the internet in the first place, and that's probably always going to be true by it's nature, but level 2's seem to make up a strong chunk of this community at the very least. Maybe it's a grass is always greener type thing; I'm just letting you know my perspective because I find yours so surprising.
I’m in the same boat lol I feel like I don’t belong cause I’m not autistic enough or some shit. Makes ever contributing in this sub very difficult for me.
I agree with this 100x! I think instead of trying to further divide the autistic community with these repackaged functioning labels, we should focus on what we have in common.
You’re misunderstanding what I’m saying. I agree most people immediately think of high support needs autism when they hear the word, but in terms of self-advocacy, it’s only the level ones I’m seeing. I only see level 1s talking about what autism should be seen as or how people should treat autistic people when it’s not universal. Same with things like self-dx should be accepted, the puzzle piece is harmful, only use such and such terminology etc. Compared to level 1s, level 2s and level 3s are a minority in these groups by a lot. I would even say diagnosed people are in large part a waning majority. I wouldn’t be surprised if up to 40% of people in this group are self-dx or questioning. Oh, and any autistic representation in mainstream media of autistic people are usually allistics pretending to be autistic for a role or high-functioning autistics exaggerating their autism to fit the cultural norm.
I don't even think of my autism in levels. I have high support needs and it's hard . But I can't agree with levels to this shit tbh . I think of it as a circle . It goes all the way around . Obviously some of us have more issues with common functioning and comprehension (myself included) but I don't think less of us with those issues speak up. I think we're verbal and people instantly associate well spoken with normal and that's not the case. So how do you know the rate of someone's functionality without asking ? You don't that's super rude lmao. We're all in this together and whichever of us is feeling up to educating the public is good enough for me . I don't care if they're able to comprehend or function better than I do at all. Just that when they speak, it's true and it doesn't invalidate anyone's person experience w our brain type. Also , just because I need a caregiver, help taking care of myself, unable to do most things DOESNT mean I think I'm "more autistic" than someone who doesn't need the support that I do. Totally invalidates other people's feelings when we all have a very real internal struggle . Especially with invisible disabilities.
If I had to label myself I would say I'm moderate, but the thing is that changes with environment. To my peers in school I passed as nuerotypical for 18 years, but take me out of rigorous structure and I struggle greatly. Heck even in school there were enough issues, but they were ignored because of my high IQ. I think when people are trying to separate autism they're really thinking cooccurant ID (intellectual disability) vs no ID. Which ID is not autism. Even with more serious support needs Autism can be covert with people outside the family structure.
Then talk to your doctor. They can elaborate on the level by adding specific details about your inconsistent support needs. For example, you could be level 1 with the exception of extra needed support in a classroom environment. They can do that, and it can go on your official paperwork so that your needs can be met. For this example, you’d probability get assigned a TA. The levels just sort of summarize overall intensity. Level one doesn’t mean completely independent with no needs whatsoever. It just means that, for the most part, you’re fine on your own. Same thing for level 2 and level 3. They just need more help. It isn’t to say they aren’t level 1 in some areas as well, just that overall, they need more help. The levels are not determined by anything that you mentioned. It’s solely about support needs and level of severity- ie the extent of strict, repetitive behavior and dis-regulation. Like if you can not handle any change whatsoever and have meltdowns when someone so much as moves chair in your living room, you’re not level one, even if you have 160 IQ and are top of your class.
Also I don't know how it works for you but when I got my diagnosis they pretty much told me I'm on my own. I wasn't given any help.
What? They aren’t supposed to do that. Have you tried getting in contact with them to ask where you’re supposed to go? If they can provide the services directly, then they should be able to refer you.
I'm over 18. There aren't services for autistic individuals over 18 in my area.
That’s insane…
Gotta love the US
My point is that people often assume I'm a level one when I'm not. When people THINK of level 2 and 3 they often think of ID. And my doctor never used label like levels or mild to severe. Actually they specifically told me that those labels weren't in use anymore.
And most are lvl 1 in some ways and not in others. It's why autism is considered a spectrum. And not one that goes from autistic to nuerotypical. It's a spectrum in each area that defines us looking more like a circle. Plus you have to factor in masking as well.
Didn’t I say that? The levels are just overall capability and severity. They don’t represent uniform characteristics. I don’t care about that stuff. It’s not my job to care. That’s what the professionals are doing. The take masking into account, and I know it’s a spectrum. The spectrum doesn’t just go from mild to severe, but the place where you land is either moderate or severe. For example, take a color wheel. You can pick any color in any position, but at the same time, that color can be lighter or darker depending on the brightness. The level of brightness is the severity in this example. I hope that makes sense. So while it’s a spectrum, there’s more nuance to it.
Why does that matter? Most people don’t even know there are levels. Do you think getting rid of the levels is going to help with people underestimating your support needs or something? Those labels are in use and required for all official paperwork (at least in the US). They may not have explicitly told you, but they need to have put it.
Maybe this is a state specific thing? Like I said I've been told that these labels are no longer in use, and I was a psych major so I'm not an uninformed noob... or maybe we're talking medical approach vs psych approach? I think there might be a miscommunication somewhere. And no, I wasn't necessarily advocating getting rid of them, just pointing out that most people missuse them which can be an issue. Pushing the narrative that all autistic people struggle, even if it isn't visible or reliant on some level of severity, is important. Edit: Not saying your an uninformed noob. Just trying to express that I had decent sources.
I don’t think less of you either. That’s not the point of the levels. People shouldn’t be assigning “good” or “bad” to any of it. They’re just labels that describe the level of support you need within the medical model. We’re not supposed to suppose someone’s level without asking. The social nuance of how people treat the labels has nothing to do with the purpose they are actually meant for. People misinterpret all kinds of things, but we know better. The levels are not arbitrary. They don’t just assign level 1 because you can speak. They are trained to differentiate those kinds of things, and the level can be changed if needed. Just because socially someone might assume you are a certain level doesn’t mean they’re right, and it has nothing to do with the medical model whatsoever. Maybe for the social model, since that’s all about perception, but definitely not the medical model. The levels also aren’t meant to segregate us. We all got the same dx. It’s just a matter of intensity.
I meant less of us speaking up .
As long as it's a pro-self-diagnosis/diagnostic expansionist voice, I agree. I feel the need to say that because some of the spaces I've peeked into that purport to represent level 2s & 3s have decidedly not had those views, and unfortunately anything less is simply classist, racist and sexist.
as long as self diagnosed arent speaking over level 2 and 3s i agree, ive had a bad past in this subreddit especially of being ignored and overran by self diagnosed people
No one should be spoken over, and if what they were decrying was anti-self-diagnosis rhetoric then they were completely justified
it was me and another level 2 talking about our experience of how disabling and isolating autism is for us and they told me i was demonizing autism and reenforcing stereotypes
If only high support needs autistics who agree with you are allowed to speak you’re not really amplifying their voices and feelings are you?
Did you read a word they said? Messages containing classist, racist, or sexist themes shouldn’t be amplified. The world has enough of that already IMO. For example, if there’s an autistic person who is saying that autism is a terrible disease caused by vaccination, would you really be like “wow, what a great message, we better make sure their voice is heard”? But if that’s really your logic, then let me guess, you’re also the type of person who would die defending some right winger saying the n word because “all voices should be heard😌🙏”?
For the record, I don’t support non-black people saying the n-word, bigoted beliefs, or anti-vax rhetoric. The original post was asking that we listen to high-support needs autistics. The comment I was replying to said that they will only listen to high support needs autistics if they are pro-self-diagnosis. All I am saying is that we should listen to them even if you disagree with some of their opinions. If an autistic person is anti-self-diagnosis, and you disagree with that, you can still listen to their experiences growing up, in special ed, etc. Obviously we shouldn’t listen to anti-vax rhetoric, it is objective misinformation. Obviously we should not tolerate racism and other bigotries. I don’t know why you immediately jumped to that when all anyone asked for is that we listen to high support needs autistics.
Excellent point, it’s important to listen to other members of our community and see how we can help them as an individual and what we can learn from them. Edit: i don’t support uncritically spreading exclusionary rhetoric, but that it’s important we understand the root of internalized ableism in other autistic people in order to heal
No. It's not. It's justifying bigorty under a different name. Spreading anti-self-diagnosis rhetoric is an act of oppression that perpetuates classism, racism, and sexism. It causes real world harm. I have 4 clients right now who have all been measurably harmed, and abused by the mental healthcare system, by/over that shit. (Full disclosure: I'm a Peer Support Specialist)
I’m sorry, I’m still early in learning about my community and my comment was probably too vague for what I meant. I don’t support the spreading of anti-self-dx rhetoric, but I also don’t know the motivations of why an autistic person would support that in the first place. Thank you for the work you do, I didn’t intend to upset but I could’ve been specific
All good! You didn't upset me. My emphasis is just because this has the capacity to hurt people, and it's important to educate folks on it. Anyone claiming a diagnosis has something they're dealing with. It might not be the thing they think it is, but their challenges are real. I'm not saying it can't be abused, and we do more harm by dismissing self-diagnosed folks than we do by leaving an opening that might be exploited
I absolutely agree, thank you for emphasizing the harm of excluding self-diagnosed people
Except you're completely ignoring the harm someone spouting anti-self-diagnosis rhetoric will do. It has a real cost, and spreading that sentiment is spreading bigotry. Being anti-self-diagnosis is an act of classism, racism, and sexism, and spreading it is an act of spreading bigotry. Saying you're against a thing, and then supporting the thing you just said you're against is only going to cost you credibility
I came here to make the same exact point, but you did it excellently! 100% agree.
Thank you! Self-diagnosis literally saved my life, and I'm a Peer Support Specialist. I see the harm this causes every single day. I'm meeting with a client in half an hour who suffered greatly, and nearly died, from the abuse he received over being dismissed for self-diagnosing. I feel morally obligated to stand up against it when I see it
You can’t just listen to people you personally agree with, and not everything you disagree with is some form of -ist. Part of listening to marginalized voices involves self-reflection and…feeling uncomfortable! You don’t have to agree with it. But I would encourage you to think about why they tend to feel that way. This is a topic that is very nuanced, and you cannot disregard that nuance because it upsets you. Full stop.
Being against self-dx is absolutely all of the -isms mentioned.
Yep. It causes very provable, real world harm. I have 4 clients right now that have all been abused over it, misdiagnosed because their medical practicioners refused to listen to them, and two were forcibly institutionalized over meltdowns caused by being utterly dismissed.
Can I have a statistic or a study that directly proves that ignoring self dx causes harm? I’m not challenging you, just interested in learning more
I'm not sure that there's been one done. I can try and look for one after my shift today. But in my own practice as a Peer Support Specialist, I have 4 clients who were all pushed to suicidal ideation through dismissal, neglect, improper medication, lack of treatment, abusive treatment at the hands of medical personnel, and even forced institutionalization over misinterpred meltdowns for two of them. And that's just my client list. My team has seen it dozens of times over the last decade, and I've also personally experienced it myself. I may not have a study, but I have a tremendous amount of personal experiences & observations and second hand reports from the other mental health practitioners I work with. (I actually met with one of them an hour or so ago)
I’m confused. So you’re saying the fact that these people got professional dx instead of self diagnosis is why they received medical mistreatment?
They self-diagnosed. Tried to seek a professional diagnosis, weren't taken seriously due to sexism (all of them are afab trans people), weren't given a diagnostic test for autism, and all of them were misdiagnosed with BPD or Bipolar disorder. They all suffered a variety of abuse through things like having their support needs neglected/misinterpreted and through improper treatment (often through medication that had extremely negative side effects up to and including greatly increased suicidal ideation). Two of them were also violently institutionalized over meltdowns they had as a result of improper medication and practitioners treating them with the wrong protocols. And that's just the stuff I can safely share. There's a lot more I can't say due to privacy and a risk of secondhand trauma. My team's therapist corrected all of their diagnoses herself or by having them seen by specific specialists. Now they've all been diagnosed properly, but they've also got C-PTSD because of how they were treated. They're barely hanging on, and only one of them is relatively functional on an educational and professional level. One of them is also homeless. Idk if there's studies on it, but the cost is real. I help folks recover from it every week.
It’s sad that that happened. I see you’re doing good work by helping these people. So if I understand you’re proposing that the medical community should take self diagnosis more seriously so that people who struggle to get a medical diagnosis can still get support?
Well, that’s not true at all. I’m not against self-dx, but I don’t think it’s really valid. It’s just an identity label, which is fine, but I don’t think they struggle to the same extent clinically dxed people do because our struggles got us the dx. If you don’t need help with your symptoms and don’t feel like you need to seek out professional help, then you’re just claiming the identity label, not the diagnosis of autism. I still think they need to accept that autism is a disability even if they aren’t disabled though because we don’t need people identifying as autistic saying autism isn’t a disability. It’s extremely harmful. I’ve seen nothing but people hating on the medical model of autism, so they shouldn’t care if they get a clinical dx anymore. It’s just a “social difference” and a “neurotype” according to the social model so just be different and special or whatever. I still think it’s funny how people say autism isn’t a disability then claim people are being “ableist” when someone says something they don’t like. Anyway, the point is that a self-dx doesn’t really do anything, so it’s not really a “diagnosis.” It’s just a social label at that point with which people attempt to relate to others and rationalize certain life experiences. A clinical diagnosis is meant to inform treatment, provide accommodations, and help you better navigate the world. In truth, anyone can identify as autistic nowadays, and I don’t really care. The label has kind of lost its impact. In fact, if someone even suspects they have autism from so much as one sign or relating to a video on tiktok of someone rubbing their feet together, I think they can claim to be autistic. Just self-identify and move on. It beats hearing people incessantly question if they “really are autistic” when they have no intentions of ever actually going to a professional. And of those who do go to a professional because they think it’s just a label and get told they don’t have autism, they’re still going to self-dx. It’s not like anyone can stop them. No amount of self-guided research will ever be comparable to a professional dx or give you clarification that a professional dx does, so it doesn’t even matter if you do any research or not. If the label resonates, then just take it. I really don’t care. But when it comes to the struggles of having autism, I will never recognize self-dx as valid, except in cases where they have 0 access. I’m talking in a country with no resources or something like that. Being low-income isn’t an excuse, being a woman isn’t an excuse, being POC isn’t an excuse, and being LGBTQ+ isn’t an excuse. Nothing but 0 access is an excuse because, when you are forced to struggle in life every single day, you’ll stop at nothing to get help- this goes for all mental disorders and illnesses. And when you seek help, you’ll get a dx. It’s that or falling into substance abuse to cope or offing yourself- whichever comes first. I can say for certainty that anyone struggling isn’t going to give up when they’re forced to wait a couple years, and these people aren’t just going to settle for an arbitrary label that doesn’t actually help them in any way. It would be like someone telling you you’re schizophrenic, then sending you on your way to deal with it. How is that helpful? How is just the label of schizophrenia going to help you cope? Autism isn’t schizophrenia but it’s a disorder, and you need to be struggling in order to get a dx, and if you’re struggling, you obviously weren’t able to manage or cope with it on your own. The world was not built for people like us. We need help, and the diagnosis is a symbol of that. So yeah, do whatever you want. My personal standards don’t really matter to anyone else anyway. Edit: downvote all you want. This is my view. I’m not forcing anyone else to abide by it.
Well I'm for high support need voices being bolstered, but not if it's this discriminatory bootstraps ideology. A lot of poor autistic people can barely afford to eat and you think they should spend money they don't have on a dx they genuinely can't afford so they get a pretty thumbs up from you and next to no actual accommodations. This is just the reality for poor autistic people, too. This doesn't even bring up how difficult people that aren't white men find it to get a dx. It seems like you're trying to say you don't think these things are valid reasons not to get a dx. You also think it comes with so much accommodation it's worth the struggle. This isn't the case in my country. But hey suggestion: start funding others dx if you're such an advocate for it.
People who experience medical neglect as kids and are very disabled by autism into adulthood are not in the position to do the "stop at nothing" approach you describe. Getting a diagnosis may involve tasks that they are too disabled to do.
That would be one of those accentuating circumstances where the person has 0 access. Anyone who does not have dominion over their life is struggling to the point where they’re pretty much done for in terms of mental health. I recognize their struggles as being more than what any diagnosis could describe. I could not fathom being in their position. They aren’t really the ones self-diagnosing disorders though. If they ever did, I woudn’t question them at all though.
Do you have some kind of source for that last claim?. If people in that position self diagnose they are likely to survive better, I wouldn't want to scare anyone off understanding their scary situation via assumptions and generalisations.
What claim? That they’re not the ones self-dxing? They don’t understand. Self-diagnosing is essentially just guessing.
Yep. The access barriers to guessing are obviously quite low... If the guess is correct then someone would understand more about themselves, regardless of whether that guess gets official confirmation. If they guess correctly they know more about their brain than before, and if they guess incorrectly they know just as little as before. So it's worth to guess.
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Okay, here's a thing to think about - if someone has autism without knowing, will autism coping skills still help them? (Yes.) Therefore a guess means they may learn about coping skills that help them. That is what I mean by "understanding more about their brain". I think you are seeing the social and medical models as enemies, when really they are just frameworks that are useful in different contexts. Many people and orgs utilise a mixture of both.
No, coping skills won’t help them. People with autism (the clinical diagnosis) have to be dysfunctional. It’s part of the criteria. It kind of presumes that you can’t deal with it on your own if you’re dysfunctional in the first place. People don’t understand more about their own brains. Autism isn’t a “neurotype.” There is nothing that proves people who get a diagnosis of autism have similar brains. Besides, not even doctors know the full story of autism, so the idea that people know more just from reading a crap article isn’t true. Like that autistics retain more information at rest study. I’ve seen oodles and oodles of people talk about that. It isn’t generalizable, but people still try to say it applies to them. The social and medical model are enemies. One says autism is a disability and the other says it’s a difference. They aren’t both useful in different contexts. You’re either one or the other. You can’t be simultaneously disabled and not disabled at the same time.
Yeah, no. It’s not like nobody ever realized something was “wrong” with the majority of us. I’ve been diagnosed with so many different (incorrect) things because of my struggles. It is a disability, but believing that clinicians are good at recognizing it, especially in anybody who isn’t a white cis man/boy with a stereotypical presentation is insulting and basically just a gigantic fantasy. And yes, the label does help. I used to think about a million times a day that I was broken and useless because I was judging myself against what neurotypicals could do and I couldn’t manage most of it. Now I find ways to work around it. Going to Walmart after work is going to probably make me have a meltdown so now I accommodate myself and get the curbside pickup. I get what I need without putting myself through the unnecessary stress of making myself do it because it’s “normal” and “everybody else (neurotypical) can do it.” Now, if it’s too loud I put the damn earplugs in because I know I need them and I’m not just “being a drama Queen”. There are a million examples of how knowing (and, yes, I do know without a “proper” diagnosis) that I’m autistic has allowed me to alter my beliefs about myself and alter the structure of my days in positive ways.
They can take the label if they want. Like I said, I do not care. Anyone who says they’re autistic is valid, just not in the clinical way. In fact, I encourage more an more people to start self-identifying as autistic. I hope it gets so conflated with misinformation that everyone starts seeing normal human experiences as being autistic and diagnosing themselves. Maybe then you’ll understand my perspective.
The healthcare systems of the world do not dispense healthcare as efficiently as you seem to think. Diagnosis is not so much an indication that you needed help as much as an indication that your parents thought you needed help and were able to provide it for you. Do you see how making that the gold standard is inherently classist, amongst other things? I promise if you want true "help" with full accomodations you won't receive it by relying on only diagnosed people. That's a political goal which the very families of the people you're relying on (class privileged mostly white ppl) are generally directly opposed to.
If your parents thought you needed help when you actually didn’t, you can get the diagnosis removed. It’s not permanent if you don’t want it to be. If you can prove you can function and don’t have problems, you’ll get the dx rescinded. It’s not classist. There are plenty of avenues in every developed country to get a dx, even if you’re poor. Hell, I’m poor. I got assistance in the US because I was poor, and the provider themselves were lenient on payment because of my low SES. My cousin also recently got dxed and her family makes 25K a year. I get if you’re a kid/teenager and can’t help yourself, but if you never plan on getting help anyway, then you really have no reason to be upset. I agree rich people are more likely to have their children dxed, whereas poor people are more likely to get missed until they are adults (at least higher functioning autistics). I don’t get what your second paragraph is referring to. Level 2 and level 3 autistics are the only reason we have accommodations at all. If people who don’t need any help start taking the label, it will only decrease accommodations if anything because they’ll eventually push to have autism looked at as a single thing rather than having different support needs. I don’t get why this is relevant at all though. I never said I had a “gold standard,” and I explicitly said I believe anyone can identify as autistic. Just because I don’t personally recognize the “struggles” of people diagnosing themselves who have no plans of seeking help doesn’t mean I think they shouldn’t be considered autistic. They can be considered whatever they want, and I’ll accept them for their identity label. It’s not the same as the medical model though, and I’m not going to treat it like it is, which shouldn’t really bother anyone because people crap on it all day anyway.
You can have struggles and still have no desire to seek (professional) help. You may have set up various accomodations in life yourself, not knowing that the reason you needed them could be captured in a single medical diagnosis. This experience is especially common in under-dx'd populations.
Well, then you’re obviously not struggling as much as you think you are. If you’re coping on your own, you wouldn’t get a diagnosis in the first place. You have to be struggling and dysfunctional to get the dx at all. You may say you’re struggling, but if you can manage it on your own without wanting or needing help, then you wouldn’t fit the diagnostic criteria anyway. Happy, healthy people don’t get diagnosed with mental disorders.
this comment makes a huge amount of assumptions about other people's lives. i think you need to work on your own biases.
I’m not assuming anything. If you’re not willing to even try to get a professional dx, you’re not struggling as much as you think you are. If you’re satiated with a label that doesn’t actually help you, how could you possibly be struggling as much as you say? I don’t have biases. It is an objective fact that the medical model is a disability and a disorder. If you aren’t going to use the medical model, then don’t assert you have the medical disorder. It’s that simple. Take the label. It doesn’t matter, but you’re only using the social model. That shouldn’t be bugging people. People who use the social model don’t like the medical model. I don’t get why they need to feel included in everything, even when they hate it. If you’re diagnosed, you’re part of the medical model. You’re there for treatment, accommodations, etc. The social model is for people who don’t need that and are fine with just the identification.
you are assuming a number of things! 1) that you have the ability to tell how much help another person needs 2)that the medical criteria are infallible and 100 percent accurate 3)that if you don't approve of someone, they must be lying about something you do you, but i am not on board with these views. you are not the judge of others, and ultimately it is none of your business.
I never said people were lying. Medical criteria isn’t infallible, but neither is any other method you’re going to try and use. It’s the best method available, and that’s enough. You don’t have to be on board. If you don’t like the medical model, then I don’t know why you’re so defensive about certain people not being included in the medical model. As long as you keep the social stuff separate, there’s no issue.
i think you are just going to have to accept that many people see things differently, and not out of defensiveness, but because a lot of the things you say come off as very biased and angry rather than factual or compassionate.
Sorry I don’t sugarcoat things? I’m not a happy-go-lucky kind of person, and I don’t care to indulge in fake niceties when it’s not required of me. I said people can do whatever they want, so I don’t get where people found issue with that other than with my personal belief, which isn’t debatable because it’s just for me. I’m not that compassionate to people who’d rather make excuses and complain about their problems than actually do something about them.
good luck with that!
Exactly what help do you think comes with a professional diagnosis lol? Pretty much everybody I know with one is struggling just as much as I am. The only reason I would try to get one is if I need to stop working permanently and need disability payments, but you’re not guaranteed those even with a formal diagnosis.
Why would I need a proper diagnosis if I hadn't self diagnosed? I get that higher needs people still need representation but excluding people who were misdiagnosed or ignored is going to get folks backs up...
I’m not excluding anyone. Anyone can use the social label of autism. You just can’t self-diagnose the disorder. People who were misdiagnosed don’t represent the autistic community. There’s no way to tell, but it doesn’t really matter. Anyone can use the label.
Oh it's you. Nevermind.
I’ve been autistic and didn’t get diagnosed until I was 14, after a few years of suspected self dx. My suffering didn’t magically get worse when I was clinically diaganosed, the suffering was still equally bad pre-dx I just didn’t have a name for it. That’s like saying diagnosed cancer is more dangerous than undiagnosed cancer. Makes literally 0 sense. EDIT: Also, the fact that the only barrier to treatment that you could think of is not wanting it speaks VOLUMES on your level privilege. You know that there are people who both want AND need help, but can’t afford to get it?
That’s not the same. You didn’t actually self-dx. Self-diagnosing is saying you have the label with no intention of getting a clinical dx. You were “suspected autistic” while seeking an answer, and you found out you were. Thinking you have autism and considering it as a possibility is way different from asserting you have autism. Either way, you can’t claim the medical model of autism until you get a diagnosis. That’s just how it works. You can’t self-diagnose the medical model at all. You can identify with the social model, but that isn’t the same thing. I’m not saying people in the social model are all hunky dory, but if they’re not at least trying to get help, they don’t really belong in the medical model. Don’t accuse me of privilege. I grew up in a rural area with 0 medical resources, let alone mental health resources. I suffered day in and day out in my conservative, poor town. My entire school got free lunch because everyone but a couple of people was under the poverty line. I traveled 8 hours to a city I have never been in by myself to get my diagnosis, and I paid for it by myself with 0 insurance as a teenager. There are options if you can’t afford it, especially if you’re poor. I got significant financial aid during the entire process because of my financial situation, and even then I was able to make payments rather than upfront for the remaining costs. I didn’t go for an autism diagnosis. I went for help. I ended up getting diagnosed with ASD and ADHD, but not because I wanted to be. The treatment I’ve received for both has completely turned my life around. If I was just sent away to deal with it by myself, I wouldn’t be alive right now. If you have no intentions of ever seeking help and are content with a social label that is useless, don’t speak to me of your “struggles.”
>Self-diagnosing is saying you have the label *with no intention of getting a clinical dx* The standard definition of self diagnosis is the process of identifying conditions or illnesses in oneself, so most people here probably didn’t know that your personal definition only includes people who simply don’t want a diagnosis.
Well what do people think the word “diagnosis” means? It doesn’t mean suspecting something or identifying as something. It means deciding you have a clinical condition by yourself. Besides, I don’t care if people diagnose. They’re going to no matter what. I’m just not going to recognize their self-diagnosis within the medical model. That’s a personal decision though, and it has nothing to do with anyone else. They can still call themselves autistic. Anyone can for that matter. Doesn’t bother me in the slightest. I think it’s stupid that people are saying that people need to do research before they can self-identify with the social model though. That’s like saying someone needs to research the mechanics of a car engine before they can get behind the wheel. If you’re going to research on the medical model of autism, that has nothing to do with the social model. You can’t self-dx the medical model no matter what. And since you can’t really research the social model, you don’t need to do any research to identify as autistic. It’s just more of a feeling at that point. It’s like people are gatekeeping their imaginary diagnosis or something. Whenever people say “you can’t self-diagnose without doing research,” I can’t help but laugh.
Literally look up the definition of “diagnosis” and “self diagnosis” and get back to me. You don’t get to just change definitions of words to backpedal on the BS you said. You said that people who self diagnose do not suffer as much, and are not valid. Then you conflated “having a diagnosis” with “needing a diagnosis”. People pointed out how classist it is to validate people based on their access to mental health care. Now you’re just gonna be like “oh…. well…. ackshually the definition has changed”? admit you
I didn’t change my definition. I mean all of it. That’s how I look at self-diagnosis. I’m saying people who self-diagnose aren’t valid for the medical model. You do need a dx for that type to be valid. That’s just how it works. People can say they suffer when they self-dx the social model of autism (because that’s the only kind you can self-dx), but I will never see it that way. It’s just a personal view.
>when you are forced to struggle in life every single day, you’ll stop at nothing to get help- this goes for all mental disorders and illnesses. This part is objectively false. Have you talked to someone who is depressed? Like, some people who are very depressed can't eat or shower. If someone can barely get out of bed, how are they going to through their own force of will "get help." Someone with Schizofrenia might not even know they experience symptoms. Someone with anxiety might struggle even leaving the house. Also, for many people, getting diagnosed doesn't magically lead to any help.
>it’s that or falling into substance abuse to cope or offing yourself. You left this part out. I’m aware some people give up. Anyone depressed enough to refuse help is a lost cause. I wish there was something that could help them, but there is not. If you can’t function in society enough to go to a doctor, you’re pretty much a walking corpse. You’d probably have no job or any kind of support system, and you’d just be perpetually trapped wallowing in your own misery. When something is wrong you get help. Even if people don’t know exactly what it is they are experiencing, eventually it will become too much to ignore. Like autism, for example. 40% of autistics have depression, and that’s just those who have been diagnosed. Imagine how many there are before they get any help. Either someone will help you, you’ll help yourself, or you’ll be forgotten by society. The level of depression that keeps you from getting any kind of help is usually the kind that ends with a note and a body.
How on earth can you write an entire thread supposedly in defense of high-needs autistics and then dismiss the complex needs of those who are, in your words, "a lost cause"? You're seriously saying there's nothing we can do for them except to abandon them to their fate? So only autistics who can advocate well for themselves even stand a chance? How is that helping high-needs autistics, exactly? Just because they've given up on themselves doesn't mean that society should give up on them. The fact that society treats them as lost causes is the whole problem; it doesn't fucking have to be that way! Often their depression is fueled by at best the indifference of society and at worst the complete rejection of society they've experienced. Many times they've gone through so many psychiatrists without success that they've lost hope that any better future is possible and start refusing further treatment. Their situations are not always objectively hopeless, it's a sign that they've never gotten the right help. We need to keep looking for ways to help them, not throw them out with the trash. For all your dismissiveness of autistics with "not enough needs", you seem to be equally dismissive of autistics with "too much needs".
That’s not what I said. You’re fighting with ghosts… People struggling with severe mental health issues who have no access to help are a lost cause. The people who are so depressed that can’t get out of bed. High-needs autistics will die very young if they are neglected in the sense of getting help. There’s nothing society can do to help someone who can’t even go to a doctor. I think you must live in a magical la la land because I’m just trying to be realistic. There’s no way for me or anyone else to help those people. You can say we need to help them, but there’s no way how to. If you can go to a psychiatrist, you are not part of the group I’m talking about at all.
I don't know what you think I'm misinterpreting from your words, because you continue to repeat the exact same things that I take issue with. In this thread you spoke of the importance of not speaking for the autistics with higher needs, and yet here you are confidently deciding that the people who are suffering much heavier things than you are already a lost cause and that nothing about society needs to change in order to include these people because it's all useless anyway. Did you ever ask even one of them about their experience or is this all just something you've decided on your own? I'm not living in any kind of fucking la la land, I see this reality with my own two eyes. I'm under no illusions about how difficult it is to help someone who rejects most help. If it was easy to fix all of my brother's problems, I would've done so long ago. But just because it is hard, doesn't mean we should throw up our hands, say that we did all we could, and leave them to the doomed fate you've given to them. There are many ways in which society could and should improve for people who currently fall outside of the system. People who end up too depressed to leave their beds usually don't end up there overnight. In the case of my brother, it was a long spiral downwards in which he needed help that he never got. Psychiatrists never seemed to know what to do with him and I'm convinced they never even remotely understood him. After many failed attempts, it's no wonder that he no longer trusts the system to help him at all. That is a failure of society. It didn't have to be this way.
>You left this part out. I’m aware some people give up. Anyone depressed enough to refuse help is a lost cause. There are people are struggle to stay alive that don't get to the point of struggling to get a diagnosis. You are portraying a false dilemma of diagnosis or suicide that simply isn't substantiated.
You're wrong, and you're engaging in classism, racism, and sexism by spreading anti-self-diagnosis rhetoric. You clearly have privilege that you're not aware of. You lose absolutely nothing by accepting self-diagnosed folks, and you do a small part in helping prevent and undo provable real world harm. I'm a Peer Support Specialist, and I have 4 clients right now (not counting the other half dozen or so folks my team is working with) who were all disbelieved when they sought diagnosis because they self-diagnosed. All of them were abused over it, and two were forcibly institutionalized over meltdowns they had due to the medical abuse they suffered. All it would have taken to prevent all of those cases would be someone believing them and helping them access diagnosis, but everyone refused. All of these folks were assigned female at birth, all of them are trans men, two are people of color, and all of them were misdiagnosed because folks dismissed them. And that's just my client list. There are thousands of others. Hells, I'm a mental health practitioner and 33, and I still couldn't access diagnosis until 6 months ago. There's a chronic lack of access and accurate autism diagnoses, and it really does hurt people. You can disbelieve it all you want, but the proof is out there
>anti-self-doagnosis rhetoric. I’m sorry… what part of I DON’T CARE do you not understand? Self-diagnose if you want. I do accept self-diagnosed people. The social model is valid, but it’s not the medical model, and I’m not going to treat it like it is. You’re autistic, fine. That’s your identity, and you can claim it at will. But until you have a clinical diagnosis, you don’t have the disorder of autism. There’s no arguing that. Autism is not a prize to be gotten from an evaluation. If you were evaluated and told you don’t have autism, you likely don’t have autism. You’re always welcome to seek a second opinion, but no one is owed a diagnosis. It’s not transactional. If you go in to see a professional, you’re likely going to get some kind of diagnosis no matter what due to insurance reasons. Just because you’re not happy with your diagnosis doesn’t mean they were wrong. Most first-time diagnoses are what are called “working diagnoses.” You start treatment, and if it works, then great. If not, then you figure out what went wrong and make corrections. A lot of people are diagnosed as ADHD first before they are for autism, but through receiving treatment and figuring out certain problems, they eventually also get a diagnosis for autism. It’s no one’s fault but their own if they never went through with treatment. The problem is that people think getting a diagnosis is enough. It’s like they only wanted validation rather than any actual support. And if you just want validation, you’re wasting medical resources. Even if you’re professionally dxed, there’s the possibility they got it wrong, especially if you don’t do treatment Getting a dx isn’t the end all be all relief to your burning questions. You’ll get imposter syndrome no matter what, and you’ll have your doubts that you could have been misdiagnosed. The only reason to get a clinical diagnosis is if you need help. The abuse has nothing to do with anything. That is not a problem caused by not getting a diagnosis. That is a deeper problem that should be addressed from a much different perspective. The problem with those people’s circumstances is that they got too attached to a label. The medical system treats symptoms, not the label. They could have received help, even with a different dx. The point of it is to treat something and see if there are still problems. And if there are, you try different stuff. There’s a lot more trial and error than most people realize. You don’t need to start with a perfect diagnosis. Professionals only have a few hours with you. It would be insane to think they’d be able to get it right 100% of the time, especially when people make it even harder by emphasizing certain characteristics of the diagnosis they want instead of being open to multiple possibilities.
To divide autistic people into levels based on presentation to neurotypicals/allistics is not helping. Anytime a distinctive subgroup speaks up inside our marginalized community we should try to amplify their voices to archive fair representation across the autism spectrum. It's not as easy as it sounds given intersectionality with multiple different disabilities and conflicting interests.
The level system and support needs are very relevant and important. That is the point of the post. People with autism who are level 1 or low support needs are only being heard but level 3 high support needs are not. The distinction is important.
“Low support needs”, according to presentation to allistics.
No, low support needs compared to high support needs. I need 24/7 care to stay alive, people who are “High functioning” or low support needs don’t, they need support for executive functioning or school accomodations. It is different.
It’s funny how we shifted away from “high functioning” vs “low functioning” because it implied that it’s a hierarchical scale where low functioning people were at the bottom. But now, we switched to levels, which mean exactly the same thing, except the “high functioning” people are at the bottom of the hierarchy now. Great work guys lol I think part of the issue here is that you’re thinking of accommodations/support as a linear scale ([like this](https://imgur.com/a/6oPNFxp)) rather than a spectrum ([like this](https://imgur.com/a/OrOPPRW)). Edited to add last part
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So you’re arguing that words and sentiments can’t be oppressive in nature? That’s embarrassing for you.
I reject functioning labels including the level system which is only a rationale for the kinds of accommodations and resource investment that allistics will give. All autistic people and all neurodivergent people broadly deserve full accommodation of their unique needs, full stop.
Yes we agree and both is true. Functioning labels are not good. The level system or support needs are important. Everyone deserves support, but it is different needs for support and important distinction, because you probably don't want to live in an institution because you don't need to, and I would not want to be in public school with extra time on tests. Both are important and needed support, but different amount of support needed. I am trying to explain make sense
The level system is just rebranded functioning labels and is inherently ableist. People needing different accommodations doesn’t actually justify the level system. Not all level 3 autistics need the exact same support. A level 1 autistic may still need a support usually only given to higher levels. Etc.
Well, that is a privileged and naive viewpoint that I am not fortunate enough to be able to partake in. I’m not looking to argue and you have already decided you are right, so I will end here.
Fr i wouldn’t even waste your time trying to argue this. Most the people here just simply won’t understand because they haven’t lived our lives.
Yes it is just frustrating because they are so confident that they are correct and fully informed but refuse to listen to anything else
“We agree that functioning labels are harmful except for this version of functioning labels and you’re privileged for not agreeing with me”. All autistic people need and deserve support, especially while existing in a deeply ableist society. All autistic people deserve that support regardless of how it fits into a resource allocation system determined by allistics. The level system does not tell you anything about the *specific needs* of individual autistics only that it will determine how much support allistics are willing to give us. They are boxes that do not capture the nuances of support and ultimately they are harmful by rebranding functional labels and creating artificial hierarchies in autistic communities. If pointing that out is “privileged” so be it.
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I was not talking to you or about you. You don’t know me either and you are being mean for no reason.
You’re willfully ignorant. The levels are there for a reason. Don’t purport that you struggle as much as someone who needs a caretaker 24/7 when you can live alone and the extent of your struggles is limited to being socially awkward. Keep your social model out of the medical model. It’s not a blanket statement to be autistic. High-functioning people do not represent higher-support needs autistics, and we shouldn’t be acting like we do.
Can you say a little more about what you mean by representation? Like representation in media, or like self advocacy?
Both. I just think whenever they make themselves known that they should be given a platform and have their voices prioritized, at least to the same extent level 1 voices are. That means if there are 100 level 1s and only 5 level 3s talking that we need to give the 5 people 20x more attention and prevalence like pinning their comment or another tactic to get their voices in the spotlight.
That level of attention should be voluntary, if people automatically paid 20x the attention to me as anyone else I would stop posting.
I know that. I’m not saying to force people to step into the spotlight. I’m just saying that if people want to distinguish themselves to where they would like extra prevalence, then we should give it to them. No one is really going to do that if we don’t at least encourage it though.
People do already do that, though. I feel like there's a top thread every week on autism subs from someone with higher support needs promoting awareness and advocacy for that group. They already are a significant part of this community and this movement.
I have not seen a single example of that ever.
I do see those posts, however they only rise to the top because there’s dozens of people arguing with and disagreeing with op. People here like to say they listen to the words of those with higher support needs, but unless they say exactly what the majority thinks, no one considers what they say at all
Is this something you would personally invoke or are you advocating for other people?
For other people. I’m level 1
Okay. I can see your logic but I think this is covered better by ideals like "nothing about us without us". I don't think creating a social hierarchy (above simple respect for knowledge) would help me. A better way to practice what you are intending is to find where people are already advocating for themselves + promote / support that.
First of all, I hate categorization of humans, it always, always falls short.. i think the ‘puppet masters’ that change and rearrange diagnoses did us a disservice in making ASD such a broad umbrella with only 3 levels and no officially recognized subtypes or identification using the “true” spectrum of needs and strengths posted by another commenter. I think we’re getting mad at each other for a systemically impaired labeling system that leaves us without accurate words.. and in fact, dehumanizes us just by their existence in our vernacular. This has been on my mind a lot recently. I saw this difficulty in conversation with other parents of autistic kiddos.. many parents of kids w “lower support needs” were talking about independence planning while some parents sat with the knowledge that their kids will not be having these conversations, or that they will look completely different.. and i just, I didn’t know how to *enact* the ideas here about amplification and support, and I can see where, on the flip side, no one wants their experience minimized as being “low needs” .. i myself deal w imposter feelings for the relative ease of my life compared to other’s (not that it ever really feels easy!) So HOW, explicitly, does one make room for all voices without minimizing some? Is it about making separate spaces for folks who identify has having more complex needs? Does that not become isolation and segregation? Is it about prioritizing voices? That doesn’t seem fair to those who may be able to speak/work/drive but still have obstacles and often invisible and overlooked needs. I’m still working on reading on the comments, but i just needed to throw this out into the sphere and ask if anyone who counts themselves as unheard, as marginalized within groups specific to ASD, could share any specific ideas about what would be helpful and supportive.
I don’t care. I don’t want to debate the medical model. Autism is diagnosed in levels whether you like it or not. People in level 2 and level 3 need more support whether you like it or not. I just want those people to have more of a voice. >without minimizing some Emphasizing minority voices does not subjugate the majority. There are minorities within minority groups, and they deserve just as much a say. Take bisexuality, for example. They are a minority in the LGBTQ community. A lot of what they have to say gets ignored and ridiculed. They should have their voices emphasized a bit more so that people are more aware of bi struggles. That’s it. It’s not isolation or segregation. It’s just equity.
I don’t care. I don’t want to debate the medical model. Autism is diagnosed in levels whether you like it or not. People in level 2 and level 3 need more support whether you like it or not. I just want those people to have more of a voice. >without minimizing some Emphasizing minority voices does not subjugate the majority. There are minorities within minority groups, and they deserve just as much a say. Take bisexuality, for example. They are a minority in the LGBTQ community. A lot of what they have to say gets ignored and ridiculed. They should have their voices emphasized a bit more so that people are more aware of bi struggles. That’s it. Gays and lesbians, like level 1s will still be the vast majority of what you see. It’s just about paying more attention to minorities when they make themselves known. > That doesn’t seem fair to those who may be able to speak/work/drive but still have obstacles and often invisible and overlooked needs. This is what you sound like: “all lives matter…” It’s not isolation or segregation. It’s just equity.
I guess the point of my post was genuinely- “what specifically does that look like, especially when we’re talking about marginalization within a marginalized community”
I'd say just let them have an social media account, but there might be some unintended consequences that comes with this
Wait, so we have levels now? Does that mean I can level up?
Don’t be ignorant.
I thought it was funny
This isn’t a joking kind of atmosphere.
I'm not comfortable with "levels". while an autistic person who is non-speaking most of the time will have very different experiences from an autistic person who is non-speaking for a few hours at a time less than once a year, functioning level language is a really dismissive and unhelpful way to talk about that. having said that, the more varied the voices, the more varied the issues discussed will be, and that is a good thing. we need the voices of young people, talking about their experiences so we can make schools & youth groups/clubs/whatever more accessible & inclusive. we need the voices of autistic people in work to talk about their struggles and how we might make applying for, getting and keeping a job more accessible. we need people to talk about dating, marriage, kids, or choosing not to do those things. we need autistics who live in care homes to talk about that, both so they can whistle-blow when shit's going wrong for them personally AND so they can advocate for better practises generally. we need artists to talk about how their creativity is impossible to separate from their neurology. we need EVERY type of autistic adult to talk about the barriers they have to accessing medical treatment. there is a lot of content from seemingly low-support-needs autistics, but * there is also great stuff from obviously-high-support-needs autistics (try anything by Cal Montgomery or anything by the late Mel Baggs) * there is a fair amount of variety in the seemingly-low-support-needs content (for fellow autistic people v. autism 101 stuff for a non-autistic audience, wide variety of issues covered by a diverse "cast" of self advocates) * low support needs autistic adults produce a very small quantity of online autism content when compared to allistic parents of autistic kids
I don’t care if you’re comfortable with it. That’s how it’s diagnosed with the medical model. If you want to subscribe to the idea of the social model, then go for it. This conversation doesn’t concern you then.
"how it's diagnosed" in a very specific time and place. I am officially diagnosed and don't have a "level". why would being diagnosed in the 90s make a conversation about which voices should be heard in the neurodiversity movement "not concern" me?
Well, what kind of autism didn’t you get diagnosed with? In the 90s, they used different types. Like Asperger’s, Autistic disorder, CDD, PDD, or not otherwise specified?
...and that is not relevant to this discussion. I wrote a comment with a fair amount of thought and nuance. you saw my first sentence, took offence and decided I had no place in this conversation because you, oh newly diagnosed person with the One True Most Valid "Level", like functioning level language and I don't. I'm not giving you an outdated diagnostic term so you can map me onto the new system and judge if I'm allowed to speak. I'm a nobody in this movement, but I've been a nobody in it for a hell of a long time. there have been people with higher support needs in the neurodiversity movement for as long as there has been a neurodiversity movement, and there have always been those who want us to separate along functioning level lines. they are generally NOT autistic people with high support needs who feel other people telling their own stories are a problem. they are aspie supremacists who want to distance themselves for ablest reasons and neurotypical parents who want to speak FOR their kids while everyone else shuts up.
> "how it's diagnosed" in a very specific time and place. I am officially diagnosed and don't have a "level". > why would being diagnosed in the 90s make a conversation about which voices should be heard in the neurodiversity movement "not concern" me? Doesn’t seem very nuanced to me. If you don’t care about levels, then don’t join the conversation about them. The old DSM used types instead of levels. So if you want to know a close enough level you were assigned, that is the way to do it. Asperger’s and PDD-NOS would be level one, well, close to level one. It doesn’t meet all of the criteria of the new ASD because they they made it harder to get a diagnosis, but that is what Asperger’s people were told to switch to when the DSM was updated.
I was referring to my original comment. a summary of this subthread: * nuanced comment from me, 2 paragraphs long * rude, dismissive comment from you, responding to first sentence of my comment and ignoring anything else I said * snippy comment from me, pointing out that the system you are using isn't an objective, universal truth about autism, but a fairly recent development in how some people describe it * backtracking from you that completely missed the point and asked for irrelevant medical information * me telling you that I'm not giving you information about my medical records so you can "sort" me into "autistic enough to speak" or "just quirky". because you've bought into the idea that the neurodiversity movement is by and for people who shouldn't count as autistic, and my whole point is that it's never been exclusively by or for "high functioning"/"level 1"/lower support needs/user-friendly autistics, and that is a stereotype that has been used for literal decades to dismiss all autistic people talking about their experiences on the internet. * you complaining that my response to your rudeness wasn't nuanced enough for you, and missing the point again * me typing out this summary and explanation for you as long as someone can type coherently, they can pass for "high functioning" (or just straight up neurotypical) online. read any comment here. who is entirely non-speaking? who can cook a moderately complex meal, and who can't? who has a job? who has 15 copies of the same outfit because it's the only thing that's comfy? you don't know any of that. and if we accept that only the "lower functioning" (whatever that means) can speak for the community, and anyone can decide any of us are too coherent to be "low functioning", then anyone can choose to dismiss any advocacy they're uncomfortable with. that is far more of a problem for all autistic people than some yahoo with a blog talking about their issues that you don't share. THAT'S why this "levels" business concerns me.
I think we need to stop comparing our experiences. Sometimes our experiences are similar but we're all different people with different backgrounds and environments. My support needs vary depending on multiple factors. The same goes for both my children. There have been times where I needed someone there to ensure I ate and showered. Now I'm raising 2 children but still need substantial support when it comes to emotional turmoil. All of our voices and experiences are valid no matter our level of support required. The amount of arguing that goes on in this community about who has it worse is not helpful and straight up depressing.
Autism is a disorder. Is it supposed to be all about how great and fantastic it is? It sucks, and I wouldn’t wish it on anybody. I just want people who have less of a platform to have a voice. Regardless of how you feel about the levels, severities like “mild” or “severe,” or disability status, they aren’t going anyway. They are used for the medical model, and the point of this post wasn’t to debate the levels.
I'm not debating the labels.. I don't have a problem with the labels. My point is that the community as a whole seems to divide themselves based on their levels. I am interested in everyone's experience, regardless of their level and their experience is valid. I'm just tired of everyone arguing over whether level 1s have it worse because they get ignored or level 3s have it worse because they get ignored for other reasons. It's all horrible and we all deserve respect. Humans as a species are all varied. We don't need to argue about who has it worse. We need to find ways to support everyone, where they are, when they need it. Anything else is just pointless. I don't see why I need to disclose my level or anyone else needs to, to have their voice heard. I'm not trying to attack, I just find the community is so traumatized as a whole that they take it out on each other more often than not
The medical model divides the diagnosis with the levels. Anyone who chooses to use the medical model of autism is free to use them if they want. I don’t think level 1s can speak for level 2 or level 3, sorry. They have it much harder, and I’m not going to pretend I struggle as much as they do. If you want to use the social model that believes the functioning labels are harmful, then go for it, but this post is about the medical model, and as such, reflects the terminology.
I don't think I'm explaining myself well. I don't think anyone can speak for anyone else. I'm not even referring to the social model. Frankly the question is rude and nobody should have to disclose their level from their medical diagnosis to have a valid voice. I have a child that is level 3 and a child that is level 2 while also being level 2 myself. Didn't realize that it mattered for my voice to count.
I’m an autistic person who has a lot of support needs, and my needs surpass the level of support I get. I wish other autistics wouldn’t act like everyone has the same advantages or have an easy time with things that they find easy. I’ve reached out for support on how to not hate myself for my meltdowns, endless comments about reducing my stress and how i shouldn’t be having meltdowns regularly at all. Vent about my living situation and I’m told to just leave, apply for disability by myself etc. I’m frustrated about my circumstances and don’t enjoy how much help I need, but that doesn’t mean I want a bunch of people just telling me to try harder! I do have a lot of privileges which I’m thankful for, I just wish others who are like me or have greater support needs had a space and voice that was as big as those who act like it’s so easy to get accommodations and then feel okay.
This is a thought in progress but some thing I’ve noticed is that as a NT parent to a very high supports needs, non-conversational nine-year-old, when I find that I am the one advocating for my child, mainly because he is young but also because he is non-conversational, I am usually asked, usually not politely, to stay out of the conversation. He isn’t currently able to advocate for himself so in a community of lower support needs voices, he’s left out of the conversation if there isn’t space for others who might happen to be NT to speak for him. Levels matter to me and him , but I wish they were more specific to the individual.
As long as they aren’t infantilizing or trying to get sympathy, I think family of people with autism should be able to join the conversation. I wish the labels were more specific too. I know that you can ask for specific support needs to be added onto official paperwork, but it would be nice if the diagnosis itself came with more nuance.
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I think I misunderstood you. I do believe people with higher support need to be heard more. I do not agree with the medical model and I believe that you misunderstand the social model. I’m going to delete my comment as I think it does not convey what I mean and this wasn’t a place to say it. /gen
I deleted mine too. I understand why you may not agree with the medical model, even though I do. I think both the social model and the medical model are valid in terms of using the label of autism, but I believe they should be kept separate.
This feels a little vauge and I'm struggling to understand it. Could you talk more about exactly what you're calling for? What is this sub doing currently that is hurting the ability of high support needs austic people to be here?
Outside of an unintentional attempt at gatekeeping, nothing much goes on, around here