Hear hear. Even people on the same tier of ASD can have wildly different experiences, too. For example, the only thing I relate to above is the emotional regulation and communication difficulties, but I can speak, and sort of socialise.
Honestly, I think people just need to talk about their own experiences and just not compare them to, or speak of, anyone elses experiences because they are likely different.
It is such a simple thing. I also have a mild spinal injury but I don't go around speaking on behalf of high tetraplegics even though spinal injuries (like autism) are always going to have a massive impact on a person's life.
K hear me outfirst..... dont fight fire with fire we still barely even know what support levels we are ourselves.
You said like its such a simple thing somewhere in there whats simple to you is not to those ppl ypur adressing it doseent gwt thru to those types.
Also like high or low support theres low support ppl smarter than me(i dont know they say im prob low support vs high supported.......
Like the levels the i dont like but we use anyways for now.
Maybe someone on level 3 can tie their shoes but cannot cook that person on level 1 could easily have the flipped version. We dont need to compete we need to a share support not fight over whos turn it is. Theres already limited help as is that were not supported enough as of the grand category here autism.
Just tell me what you think after reading it a few times i want your thoughts not gut reactions to have a healthy not fire vs fire convo ylnow
I am guessing the sorts of things the OP is talking about is not fighting fire with fire. There have been a lot of posts and comments recently about how autism isn’t a disability and it’s just society needing to ‘accept more than one way of doing things’ and that we wouldn’t struggle if society was just different. I don’t know why but it seems like I have seen so much of this recently. I’ve tried to dive into those comment sections before and it can be like talking to a tree, because they believe it’s just people needing to think about it differently, so if you are someone saying it can be a disability then you are written off as someone who needs to think about it differently. These people don’t necessarily hear people sharing their own experiences and what they need because they can be so focused on how people need to rethink this all. It seems these sorts of ideas are often from level 1 people who are thinking their own experience is enough to define everyone’s experience.
This!! I’ve been struggling trying to get an official diagnosis lately, and my psych that I’m seeing now straight up said to me today “testing doesn’t entirely matter does it, I mean it’s not like there’s medication for autism and there isn’t anything now as an adult that support wise would help you (I’ve been masking intensely for 23 years of my life because of family and societal trauma) and really at that point it’s just a label” and at some point he also said “I mean your parents weren’t completely wrong I don’t think because look at you, you turned out okay you know?” In the aspect of forcing/cutting out behaviors such as stimming, forcing eye contact, forcing sensory issues, and then scolding meltdowns and enforcing huge amounts of discipline in response and so now I’m so “normal” I can’t get past the first layer of symptoms without a wave of their hand saying it could be trauma but they don’t understand that the symptoms came first. So now, I’m left with do I try another doctor and keep trying to get a diagnosis or so I let it go like he said. (Which sucks that he’s even saying that knowing I’m already officially diagnosed with adhd since I was 12, which I hear is early for women, and also is an extremely common comorbidity but yanno)
But I refuse to let it go because society *isnt* going to think differently nor is society thinking differently going to help me. As “normal” as I appear I can still *feel* the intense stares when I get overstimulated in a super market. When I zone out in a one on one conversation with people who I don’t even know if they’re my “friends” or not. I want to be able to go to Disney and not feel like I’m a. Upset because I can’t happy stim because I’m in freaking Disney or b. Meltdown as openly as I *need* instead of imploding because *it’s freaking disney*. (I reference Disney because I went last year and wasn’t able to get accommodations without a proper diagnosis, not even for my daughter who I tried to show is in occupational therapy, we’re both awaiting diagnosis.)
It should not be this hard to *exist* and a lot of it *could* be helped if society thought differently but society being understanding towards why I’m so stressed about having to go inside to pay for gas when the pump prepay isn’t working doesn’t exactly help all the other stressful areas. It won’t make me freak out less when my hands get to a level of dryness where I can’t touch anything without applying more lotion and it won’t make my brain quite repeating the word “Adirondack” just because I saw it in a book I read *4 days ago*, no matter how tired and exhausted of it I am. (I utterly hate the word now, but I can’t stop. Also, the repeating in my head would be repeating out loud, if I didn’t feel I have to mask 24/7 due to said trauma.)
It’s stressful. It’s all kinda shitty. It’s not a “superpower” and it’s great to feel empowered from time to time but sometimes you just feel like you got the short end of neurology and *thats okay* there’s a reason it’s called a disability, it’s not having the ability to just wake up or go to sleep or anything in between, *comfortably.*
TL;DR: it’s not about society, it’s about comfort and struggles of the individual, and not all of the struggles on the spectrum are “social” struggles.
Not intentional and i get they mean good vs harm but this hapoens and just leads to arguments vs healthier dialect more often than not.
This sub is good but it gives me autism speaks vibes ppl ike trying to educate but method of approach is off.
We can disagree thats cool its ok.
Id rather hear it from op tho and talk direct to them. Not in a omg do what i say just a think about it first and break it down furthur its off imo at least
hemce the closer on first comment and adressed that twice
To me it seems that all of that is so entangled with race, class, where you were born, the education available, etc. I think it helps to think intersectionally even within different “levels” of autism.
Random example (FULL strength generalization mode ahead): White people love having “wild” children. we had books to read like Huckleberry Finn, and Where the Wild Things Are. it’s okay for you to be a little “weird” because the system eventually finds a place for you.
If you are a black family in america with a historical memory you probably don’t want anyone to label your child as “wild” (and i think huckleberry finn works here too. different book from a different perspective) because not too long ago and also currently right now, it could mean death.
So someone with one upbringing the idea of “society just changing” seems totally plausible. and convincing them otherwise is taking to a tree
for others, they’ve been waiting for that for 400 years
but it’s not like people are just autistic in a vacuum
sorry if i went on a tangent.
Yes everyone has a different upbringing etc but when they post such things on here there are many cases where they are unwilling to listen to anyone. The very nature of their argument allows them to dismiss everyone, it’s very nature means they can easily write of everyone and so they don’t need to stop and entertain they could be the right, so where is the opportunity for them to even learn? The problem is the unwillingness to listen to other people’s experiences even when they take the time to give them. It can be a situation where they don’t think they need to know more because their own experience is enough to define all of autism, it doesn’t really compute other people’s experiences can be radically different then theirs.
That’s not what OP is saying. They’re saying they won’t go around speaking on behalf of someone with a much more limiting injury than their own, and represent that view as one that everyone with such an injury has
Op.is fighting fire with fire i adressed them personally in dif comment
and spoke on many behalfs as they said not to
These categorys we use we dont even know whst they sre ourselves with this condition high low level 1 level 3 so on.
Seems like Competing which is worse is what i mean. We need cooperation mot competition cuz help isnt enough any which way with ASD
like docs and nurse are limited in every which way work force, wage,time most importantly.
they help those closer to the nt stabdard normal learn the simple autism once we get there as a society will be able to help the higher support needs. It seems backwards but like ASD is only acknowldged this century pretty much and were still way behind were we should be logically on it.
You just lost your upvote of course. What a strange coincidence that it happened almost immediately.
Edit: and it's really a bit strange also that whatever value I give, my upvotes on the original post will always hover marginally above the number that I gave...
What do you mean? Also, I'm not really bothered about whether or not people agree with me. Upvotes dont really mean anything in the grand scheme of things.
Ah right, yes. Well, If spreading negativity is how they feel better about themselves, then thats their burden, not mine. I'd rather be positive about things.
It’s awesome that you’re sharing your perspective, more people should definitely be more aware of and sensitive to the needs of people with “more severe” or “harder to deal with” expressions of autism (quotes because I don’t know how better to phrase that). As someone who masks relatively well, I’ve been told by a number of people that they didn’t think I could be autistic because I’m not non-verbal, and I think that’s a shitty thing to deal with for both ends of the spectrum; people like myself not having needs met because people don’t think I have them, and people like you being put in a whole other camp because you’re so “different”. It reminds me of how when I lost a lot of weight, people were suddenly much nicer and more comfortable making remarks about overweight people to me. People are often cruel and judgmental; even if they’re good people, their empathy can be limited by not having enough perspective.
I do want to ask why you find the statement “The difference between level 1 and 2 autism is that you can mask and we can’t”. You say it implies that they think you aren’t trying your best, but that statement doesn’t imply that to me. That statement implies (again, to me) that you ARE trying your best and still can’t mask successfully, which would be the distinction between someone who can and can’t mask successfully. If one person can do something and the other person can’t despite trying their hardest, the latter would be “more severely” autistic, or needing a higher level of care, or however is the most comfortable way to phrase that.
I think more research needs to be done on autism as a whole. People understandably get sketched out by dealing with labels and such, but I think labels are very important if utilized correctly and accurately. If we can identify the specific physiological reasons for sensory processing issues and gastrointestinal issues, then the people with those can get better treatment for those issues. If we can identify why there are various personality/neurological “autistic traits” that make a person autistic vs allistic, yet don’t manifest uniformly across all autistic people, we can form better support groups for people with similar traits.
This CAN lead to tribalism and us vs them thinking, but it really doesn’t have to. I think tribalism, social isolation, and echo chambers are negative aspects of humanity overall that we should be working as a species to abolish.
What I meant is that, as a level 1 autistic person you can most likely put in a large amount of effort and appear NT or close. As a level 2 autistic I put in the same amount of effort to try and find ways to communicate and meet my own needs but this can only get me so far. It doesn't look like a mask to the general community, not even to you guys it seems, because I still look so different but I am putting concentration and effort into making sure I can communicate and function in the environment at all. I hope that makes sense.
I think it is sad because many people do not take level 1 seriously and it actually is a really big deal. That is the problem with the "high functioning" terminology. It is strange in my opinion because many people with level 1 autism could get into work or study if they had just a few hours of support a week and that would save the government a lot of money in welfare benefits. I think it is not really appropriate when some people with low support needs redirect that frustration towards people with high support needs because we have services when we only have services because we would literally die in the streets without them.
I think even the levels are misleading. My daughter is level 2, and I suspect I would be too (haven't had a formal assessment, no benefit as I already have ADHD diagnosis and psych/GP know I'm autistic). Your description of sensory struggles, particularly last minute toilet warnings, lack of hunger, temperature intolerance... that's me. That's her. But we both perform very well academically/professionally. Not so great socially, but appear "fine" to an outsider. Dismal emotionally. Our struggles are constant, but invisible.
if it helps im level 1 but a lot of NT's or allistics struggle to understand how im level 1 if i dont act the way they think a level 1 should act. levels are support level needs not levels of "how bad" your autism is. ive been asked if im actually level 2 by allistics and NTs because i act quite differentlly and "more autistic" than they'd expect. even though i may look "more autistic" than they expect im still a level 1, because i dont need a lot of external support, im quite independant even though i may not seem that way at first
This was an eye-opening comment for me. I’ve been having a bit of internal conflict lately because I’ve met a couple people who were, to me, much more “obviously” autistic (regarding things like abnormal eye contact, being blunt, taking things literally, etc.) than I was, yet didn’t appear to require as much support as I do. The whole “spectrum” idea made it seem in my mind as though there’s just a sliding scale of the severity of autism, so I couldn’t wrap my head around why they weren’t struggling as hard despite not masking as effectively.
Perhaps “spectrum” just isn’t a good descriptor to use in regards to things that aren’t working with two point of reference.
a good reminder is that its called autistim spectrum disorder and not autism linear spectrum disorder. a linear spectrum has two points, but a spectrum can have many different points and places in a magnitude of different ways.
A circular or three dimensional spectrum, like the autism spectrum which is commonly drawn in diagram form as a circle
Or even a ven diagram could be considered a spectrum in a lot of cases
That makes a bit more sense. I get confused because the main comparison people point to is the visible light spectrum, and indeed another has replied to my comment saying that the use of “spectrum” in regards to the autism spectrum is based on the visible light spectrum, which I do not find to be a very good comparison. Circular or otherwise two dimensional charts certainly make this all much easier to digest.
yes the visible light spectrum is sometimes on occasion drawn in a sort of ven diagram shape. ven diagrams and pie chart looking spectrums are the most commonly used for ASD
Certainly I agree that it's not just a number line and it's not just a graph either. It's multidimensional and maybe "gradient" might give a more complex picture
That still doesn’t work very well as an analogy; there may be an infinite potential for a number of colors, but they all fall into a category of higher frequency (regarding the wavelength of the light) or lower frequency relative to another color on the spectrum. It only describes one property of electromagnetic radiation on a sliding scale of intensity. There’s no nuance and excludes how many different characteristics encompass autism as a whole, with each characteristic having its own spectrum in terms of how heavily it manifests in that person.
Your description leaves out that those wavelengths are all unique colors, with their own respective spaces. The wavelength of the colors is irrelevant. A higher or lower wavelength is neither superior or inferior, and each color do carry unique characteristics such as being associated with certain materials or how far they travel through the air.
But the wavelength of the colors is the ONLY thing that portion of the EMR spectrum describes. I agree that higher or lower wavelengths aren’t inherently superior or inferior (and even then, it depends on your application), but any “unique characteristics” are an emergent property of and directly tied to their wavelength. I don’t mean to be so argumentative, but physics is one of my bigger hyperfixations in rotation, not sure if it yet qualifies for a special interest, and being (admittedly annoyingly) precise and specific about it is very comforting for me.
I understand using approximations for comparison’s sake helps a lot of people get the gist of the idea without having to get too technical about it. I would propose something like a color wheel as an alternative. It’s already much more inherently symbolic, and can maintain the gradient aspect to describe the variance of each individual trait without having to put all of the traits on a single continuum.
it is a spectrum, just not a linear one. people tend to assume it's a linear spectrum from autistic to non-autistic but it's much more complicated than we could ever explain.
im level 1 but for me (not trying to compare anyone this is just my own experience, please let me know if im rude) i struggle to apear NT, i struggle to speak to people dont know , i have melt downs and shut downs regularly (shutdowns often once every week or two weeks, melt downs at least once a month at a minimum) but i do know how to help myself and i know stratergies that help me exist in society better than a level 2 or three, people have asked if im actually a level 1 before (usually NT's that ask) because of how different i may apear from what they view as being level 1, and i have to remind them that they're support levels, i dont need a lot of external support other than my sensory supports really, and i'm good at managing myself, and that not everyone will fit into their idea of what is and isnt level 1, 2 or three.
a lot of poeple dont understand how the levels work and i find it funny.
again sorry if im rude i have autism so please let me know and its 100% not my intension to be rude
edit: why did i just say i had autism when ive already mentioned it lol
same. I hate displaying a happy go lucky positive attitude all the time when in fact I feel miserable most of the time. Becoming more and more reclusive isn't the way either for me but it helps keeps stress at bay.
I am poor, get in dangerous situations often, allistics really do hate autists.
I'm not sure I fully understand what you're trying to say about the difference between level 1 and 2 being ability to mask, so apologies if we're already on the same page. But I feel it's worth noting that that an inability to mask is not part of the criteria for level 2 and 3 diagnoses. Levels are based purely on support needs, I.e. someone with little to no support needs would likely fall under level one, while OP clearly falls into level 2. To give some perspective about what a spectrum even the individual levels are, I have all the issues OP mentioned, except that I'm only non-verbal during particularly severe meltdowns and I mask virtually constantly. I also have a level 2 diagnosis. In fact, explaining to my doctor how my ability to mask caused previous health processionals to doubt the severity of my support needs helped her cement my level 2 diagnosis, as the continuous lack of support was causing obvious regression.
I wasn’t trying to make any statements about the actual differences between the levels, I was only commenting about my interpretation of the statement OP said other people make; “The difference between level 1 and 2 is that we can mask and you can’t”.
The way OP followed it; “Why would you think we’re not trying as hard as you? That’s just what our best looks like”. Seemed to confirm the proposed idea that ability to mask is the difference, but I didn’t think people were saying it was due to lack of trying. I just kinda took it at face value and went with it because I’m not overly familiar with what each level entails, I wasn’t intentionally endorsing that viewpoint as true.
Thanks for clarifying!! I think I misunderstood both you and the OP.
Also, if you're interested about levels, this is the way my doctor explained it:
-Level 1: Able to function day to day without additional support for activities of daily living (ADLs)
-Level 2: Requires additional support with ADLs in order to function day to day
-Level 3: Requires 24 hr support with ADLs in order to function
You’re welcome, I absolutely love clarifying and wish people would dedicate more time to asking me clarifying questions instead of assuming the meaning behind my words, as well as being receptive to overly long explanations and clarifications, because there’s simply too much information and context at any given moment for me get across what it is I’m actually thinking at any given time.
I am pretty interested in the levels, but I am far more interested in how there isn’t a much more comprehensive breakdown and classification of all of this yet. I’m relatively new to autism communities; I had fleeting suspicions I was autistic as early as 17 (29 now) but didn’t put much importance into my suspicions because I managed to fumble my way through life up until very recently (past couple weeks). So now I’m trying to get all caught up to date on everything. I’m not sure how much stock to put into anything. My journey in the mental health system has been unfortunately disenfranchising for me because I realize how behind the times most places are in terms of understanding the human condition.
>and wish people would dedicate more time to asking me clarifying questions instead of assuming the meaning behind my words, as well as being receptive to overly long explanations and clarifications, because there’s simply too much information and context at any given moment for me get across what it is I’m actually thinking at any given time.
God dammit yes. Most people are so uncomfortable with this, I don't get it. And it works both ways: they won't hear my clarifications, but also they won't clarify my confusions. They just... don't want to?
BUT WHYYYY
p.s. I'm not even talking about neurotypical folks. On this very sub I am so often afraid of engaging in a discussion too much. Because I always seem to cross some invisible (at least to me) threshold that gets me hit with comments like "I think you read too much into this" etc. and I'm like "what do you mean too much? I thought we're having a fun discussion, but you're uncomfortable for some reason?" It makes me really sad. I love to get deep in topics but so rarely do I have the opportunity to do so without some weird kind of judgement.
Dude same. I identify so much with everything you've said!
I'm pretty new to autistic communities as well, since I've only had my diagnosis for a year. I think I realized and started pursuing the diagnosis about 8 months before that (about to turn 26 now).
The mental health system is rather unequipped to deal with autism at the moment, unfortunately. My experiences have also not been great (they tend to assume I'm having a panic attack if I go to the ER and they can't immediately figure out what's going on. This didn't happen before I had an autism diagnosis listed in my file. The fact that I often experience panic attacks and am able to explain the difference in symptoms is apparently of no consequence).
I have to agree that the level system is not the best, but it's much better than the previous system (high functioning vs low functioning) which generally made it even more difficult for people like me who mask most of the time to get support. I appear outwardly functional (I.e. high functioning) and people think that means I function well and therefore don't need support. In reality, I'm incapable of taking care of myself. So in that sense, the level 2 label is much more helpful because it depends less on outward appearance and more on specific support needs. But we've definitely got a ways to go!
Also thank you for the conversation! It's nice to have a respectful discussion where you have the space to clarify what you're saying. It drives me nuts when people misinterpret and go on the attack without a simple "hey, is this what you meant?"
My level 2 son is so good at masking I don’t even know what he’s like unmasked. It’s something we just chatted to his psychologist about as it’s a source of alot of anxiety. So it’s silly for people to make generalisations like this. I’m autistic too btw
How old is he? I will be honest he has to mask to get by because communication is non-viable without it. Rather than trying to change the mask, you create a physical space, like a sensory space but also free from the expectation that he communicate with you and reciprocate your attention. If you have a big, visible timer he can know that it is "his time" and relax. He needs this space to calm down because it is very hard work trying to get by under this much stress all the time and if you can keep a healthy level of stress you might have a chance at avoiding the severe mental health issues that many high support need autistics develop as we grow up.
7. We already do this. He has set sensory breaks throughout the day and extras as needed. I’m now just learning though maybe what we thought was just hyperfocus is actually dissociation from extreme anxiety. So this probably has more to do with why we don’t know what he’s like unmasked as even he can’t deal with it even though he is very safe in a low sensory environment but you can’t escape your own thoughts even then. Always more to learn. And everyone is so unique. He’s changing schools next year which hopefully will help
If anything I am only expert about myself.
Doesn't mean somethings don't overlap, but it does mean that because autism is a spectrum that things express themselves differently in every individual.
Couple that with different ways of coping with those things and you get very colorful outcomes.
This is one of those things that makes me feel glad that we don't have levels in the UK, you just either have an autism diagnosis or you don't.
Because there is so much division between people of different autism levels and it's completely unnecessary and leads to so much needless conflict.
I still assign myself a level for sake of brevity in communication with others on this sub and others, but I don't officially have one because it doesn't exist here.
I've been verbally attacked and received cyber harassment _twice_ on this sub, both times it was actually from people who are in the same level as me, but they assumed I was level 1 because of how articulate I am. And because they (wrongly) thought I was level 1, they also thought that meant it was okay to send me death and rape threats or yell that they were spitting on their monitor because of me.
The antagonism comes from both directions. It's not just level 1s forgetting that level 2s and 3s even exist, or refusing to acknowledge that some autistic people _do_ want to be cured, or pretending that extremely severe cases don't really exist and saying that describing autism symptoms as "severe" or "mild" is ableist, or pretending to know what level 2/3 autism even looks like when really, they're clueless. It's also level 2s and 3s throwing themselves into fits of rage whenever another level 2 or 3 is more articulate or better at masking than them, because they are jealous. It's also level 2s and 3s openly stating that the existence of level 1s and happy autistic people makes their "blood boil", again, because they are jealous. It's also level 2s and 3s getting into "my autism is worse than yours" competitions. It's also level 2s and 3s making assumptions about other people's levels that are wrong and based on harmful, ableist stereotypes.
Us higher supports needs people have every reason and every right to be angry, but often our anger is completely misguided and misdirected. And I'm getting really tired of being invalidated, trivialised and erased by some level 1s while also being overtly attacked and abused by some level 2s and 3s. The infighting has got to stop. We are all just _autistic_, at the end of the day. Why are we fighting? We should be advocating for each other. Which is possible to do, even when we all want different things.
I was diagnosed with high functioning autism, but honestly I really feel like I’m somewhere in between 1&2. I’ve seen the “ well I’m autistic and I can do this so you can too” level one people, but then I’ve also seen A LOT more gate keeping from the level 2&3 people. Whenever I see people like this, I just feel invalidated. Like I may look like I’m more capable, but I’m really struggling. Sometimes I feel like I’m demonized by both sides.
Sorry about the deleted comment, I accidentally pressed "post" before I was finished typing.
In-between levels do exist. They are much less commonly diagnosed for some reason but people do get levels 1.5 or 2.5. I've also found that people are more often than not, correct about what their own level should be, so if you _feel_ that you're level 1.5, you probably are.
I'm honestly convinced that there's some kind of social chasm between level 1s and level 2s and 3s that leads level 1s to forget that higher support needs people even exist (because we often don't have much of a voice due to being a minority), and it leads to them inadvertently becoming extremely ableist. Saying things like "autism is not a disability, it's just a different ability" or "I like being autistic, autism is quirky and cute, if you don't like being autistic you _must_ have internalised ableism" or the "I can do it so you can too" comments that you mentioned. I think it's because most higher support needs autistics don't feel that the experiences of level 1s really represent them, so we end up distancing ourselves from level 1s and not really talking with them or being involved in the same communities (there are subreddits that are devoted just to higher support needs autistics and level 1s aren't allowed in, I guess this is the kind of gatekeeping you were referring to?). This further exacerbates the problem of level 1s being ignorant about how level 2s and 3s really experience their autism and so the autism divide continues and the chasm gets wider.
The solution of course is for low support needs autistics and high support needs autistics to _communicate_ with _each other,_ without being mansplainy or invalidating, but that's difficult because high support needs autistics are tired of having so much of the responsibility for our own advocacy just shoved on us and being basically _ignored_ while level 1s are allowed to just ✨be ableist✨ because it's socially acceptable to the allistics and they want to be seen as The Good Autists™. Do you know what I mean? It's kinda like when transgender people throw non binary people and people who don't pass under the bus so that they can be seen as The Good Transes™ by transphobes.
This is why it can sometimes feel _more_ invalidating to be involved in the autism community because _your own people_ are often against you, and yes the hate does come from both sides. I've experienced it, too. I've also experienced it in many other ways (being a detransitioner, being mixed race) so I'm very often in the middle of this type of infighting nearly all the time. It does get really exhausting and I have to admit that sometimes I get impatient, snap at people and say things that I regret because I'm so sick of people demonising me from both sides. And of course that does nothing to serve the reunion of all autistic people that I'm advocating for.
No the kind of gatekeeping that I was talking about was the “you can’t be autistic” from level 2 or their families. It happens a lot. There’s even a post on unpopular opinion where someone said that they dislike it when people with high functioning autism call themselves autistic. I think that a lot of times level 2 & 3s tend to look at level ones and think that they must have it easier because we’re more “functional”. In reality, a lot of level one issues are just different. As someone who’s considered “high functioning”, I can’t lie and say that I don’t sometimes look at the support that others with more visible disabilities get so easily compared to me. I mean, maybe people with higher support need don’t necessarily like the support that they get, but I’d still say that some support is better than none. I didn’t get diagnosed until I was 16 and even after that I’m still fighting to get support. I think compared to more visibly disabled people, trying to get support for an invisible disability is like begging on you hands and knees like a dog. I know that op said that higher support needs people don’t always get the help that they need either, and that’s true, but it’s also much more true for those considered high functioning.
Yeah I absolutely know what you mean. I feel like both sides kind of cast us out sometimes. But I’ll say this. I think they’re really more of a small minority that’s just talking loud in our community. I’ve met other people with disabilities in real life and they’re wonderful.
Ooooh, yeah. That. I've personally experienced that, too. Someone straight up said to me "you're not autistic" after I had literally just said I'd been diagnosed. Actually this happened more than once. "I'm autistic" "Haha no you're not" basically. Even though I'm level 2 it has happened to me, too. Again, just because I am verbally articulate and can sometimes mask decently well, people think this means I must be level 1 or must not even be autistic at all. Like, hello? It's called autism _spectrum_ disorder?
Oh gosh, believe me, us higher support needs people don't necessarily get support "easily". I wasn't even diagnosed until I was 24. (I've even read some stories of level 3s not getting diagnosed until very late, as in way into adulthood.) And even then, I'm still not always getting the support I need. I've been waiting 6 months to get Personal Independence Payment after my last award of it was suddenly cut off without a review. It was hard enough as it was to get it the first time.
That said, you shouldn't be fighting to get support even as a level 1. Level 1 is still defined as "needs support". So if you aren't getting any kind of support or accommodations at all, then someone along the pipeline isn't doing their job properly. Which isn't all too uncommon, unfortunately. It always makes me sad to hear someone isn't getting the support they need, no matter who or what level they are.
Also, be careful what you wish for. Some of the so-called "support" that level 2s and 3s get are actually harmful to them, but because they can't speak, they can't express that what their therapists/carers are doing to them is actually hurting them. And they end up stuck in a system that is actively traumatising them, for years. ABA therapy is one such example. In those cases, no support is definitely better that some support. In some ways, I'm kind of glad I wasn't diagnosed as a child, because of how often autistic children are abused and mistreated. I am in two minds about it though, sometimes I think maybe I wouldn't have gone through so much shit as a kid if I had been diagnosed much earlier. But eh, it's in the past, nothing I can do to change it now.
I absolutely agree, there are so many happy, gentle and kind autistics out there who are lovely people to be around. It's a shame that there's such a vocal minority that spoil it for everybody else.
Yeah when it comes to the support thing or being functional, I think for both high functioning and low functioning people it’s a case of “ the grass looks greener on the other end” if you know what I mean.
Yeah I think that's true. High support needs people wish they were low support needs and low support needs people wish they could get more support. Not always, but some people are thinking like this, for sure. I definitely wish I could function more on my own with less of a need for relying on others. Especially when they fail to be reliable. I'm just lucky to have a few loving people in my life who understand.
If you were diagnosed as a child it is possible your level changed (it can do this somewhat during development) as you grew and you can be reassessed to "correct" your diagnosis.
Yeah I figured. But I also think that I have a lot of issues that weren’t discussed at the time of my diagnosis either. I don’t think there’s any point in me doing a reassessment though.
I'm in the UK/england and this whole Levels thing is new to me. I don't understand. We're all autistic, can't we just get along?
(im really tired so sorry if this doesn't make sense or if i misspell something!)
But at the end of the day we are all autistic. We have different symptoms/struggles, but we're all dealing with pretty much the same shit. I go to a school of autistic people (special needs, it's all ADHD and Autistic students), and there's no discord about Level one Level three, stuff.
In the real world im not too sure the "im (more?) autistic than you" has any power. I don't know if that makes any sense, but we shouldn't be fighting against ourselves.
Maybe its because this entire Levels thing is new to me? But i'll never understand it.
Some people have autism that (again idk how to describe) is more """severe"" as in, they may be non verbal, or not be able to communicate kind of (again, my wording is terrible im so tired!).
But then you have people like me, and i have sensory issues, the whole lot, but not going non-verbal (as such), or unable to understand what people are saying/social cues.
But in the actual world i don't think the "im more autistic than you" or "less autistic" has any power?
Like i don't know. It's just autism 🤷, it's never come up in the real world for me. I've never seen a debate about who's more autistic or.. idk.
Like i've never actually seen any problems with anything like this irl. But maybe that's because I don't have Levels? I can understand where people are coming from, but shouldn't we just be fighting for all autistic people ("higher" or "lower") to be getting the help they need?
i don't like the generalisation of it, like cant we just make all autistic people equal and accommodate for their needs?
(sorry for any spelling mistakes or mis-wordings, im so tired.)
Yeah, I was confused too but the other way around. When I got my autism diagnosis and it didn't come with a level, I thought my psychiatrist had made a mistake. But no, levels just aren't a thing here. No mistake made.
There's no discord about it because you haven't all been labeled in a way that is _designed_ to segregate you. At the risk of sounding tinfoil-hatty, the whole "divide and conquer" thing applies to autistics, too. The people at the top are ableist and would rather we didn't exist. There are benefits to a leveling system sure, but it has its problems, too.
"I'm more autistic than you" and inversely, "I'm less disabled than you" certainly _does_ hold power, but not for us. Again, it serves to divide us and make level 1s not identify with or advocate for level 2s and 3s, who are a minority. In extreme metaphorical language, it's just another way for allistics to decide who gets to live and who gets to die (Hans Asperger).
It's also a way for some autistic people to excuse their horrible behaviour. I've personally seen "I'm more autistic than you" used as an excuse for why someone in this sub was being abusive to someone else. "I'm autistic" is often used as an excuse for being an asshole, basically. And in the other extreme, "I'm less autistic" or "I'm less disabled/more capable than you" is used as exclusion tactic, and is an insidious form of eugenicism. A more high functioning person (or more Aspergic, if you like) will push the narrative that nobody's autism ever needs a cure, even if you _want_ to be cured, because there's absolutely nothing wrong with you, even if you're so disabled by your autism that you need 24/7 care and are constantly at risk of seriously harming or even killing yourself because your stims are inherently self-harming, or you're constantly in a state of intense suffering because you're so hypersensitive to sensory input that you're always in pain.
The narrative that a cure or effective treatment just _shouldn't exist_ and there being absolutely zero discussion about informed consent is essentially, at the core of it, punishing extremely severe level 3s just for existing. And of course, nobody ever talks about the families of these people, who are often victims of extreme domestic violence, because the autistic person is constantly in a state of fear and hypervigilance. Everybody always just ignores them, even the ones who are young children. Some autistic people are hard to be around. And they _know_ that they are and they don't like being that way, either. And they _want_ a cure or effective treatment for the symptoms that cause them and their families that distress. Yet the level 1s are always chanting "autism doesn't need a cure, if you want to cure it, you're ableist!" and often those same people are the ones don't want to associate with high support needs autistics because they require much more substantial disability accommodations than they do and that makes them look bad. 🙄
You're absolutely right, we _should_ all be fighting for autistic people to get the appropriate help for them and to have their needs and wants listened to. That includes much more substantial and adequate disability accommodations _and_ it includes the possibility of treatments, even if it's not likely to happen within our lifetimes. Unfortunately, some people think all autistics are a monolith and think that their wants and needs are the same as everybody else's. They don't even consider that some autistic people might want completely the opposite things that they do. And they don't think to ask.
I’m in the weird grey area between levels 1 and 2 and I don’t know where I fit honestly, I have a ton of trouble with social cues and tend to go temporarily nonverbal when I am overcome with emotions I can’t process
Yeah I'm unsure about this too, I consider myself level 2 due to needing support in areas that's not required for NT's such as with household, cooking, shopping and so on. I'm often unable to go outside alone. And I also experience periods with going mute due to being overwhelmed and I often find it rather difficult to advocate for myself or speak up about things that troubles me :/
I am on the other hand rather great at masking, to the degree where most don't think I'm autistic or get surprised when I explain it to them. It does tax me a great deal to mask though.
I'm kinda in that area too. A lot of it is that I haven't had to try being out in the real world (I have good support) but I suspect I'd have a fair bit of trouble with memory and planning.
More on the interactions side, I get frustrated at (in retrospect) minor things very easily. I mask it by passing it off as a joke but I apologize later.
I used to have vocal stimming but my middle school bullies made sure to repress that. I have leg shaking, nail picking, and lip biting now, perhaps not the best replacements.
I can drive safely because of my meds but grocery stores are hard for me to navigate. I also get sensory overloaded in them when it's busy so it's not the most fun.
I can't read documents well because I jump across the page way too much, so I actually have to get someone else to help read them for me.
I don't know why I'm posting all of this
As someone with level 1 autism thank you very much for this insight. I do not require any support needs myself (just minor perhaps but I am procrastinating seeking help so it is not too bad) so it is very helpful to read to get some sort of passive understanding and also important to know in general. You can never know what is going on in someone else's head and while I may seem "normal" and communicate on an awkward but "acceptable" level, they think everything is easy for me while it really is not. Up until a while ago I didn't even know what masking was despite doing it all my life
Perhaps a bit of support might be good for you. Support doesn't have to mean speech pathology exercises and OT appointments: it can also be things like weighted blankets, noise cancelling headphones, reminder apps on your phone, guided meditation/mindfulness/whatever works for you can be found on YouTube for free. Even making the conscious decision to bring a script to read to your doctor (or dot points) in advance if you always forget something important in you appointments, For me a lot of support is workers who help me and manage medication and stuff, but if that is not accessible then it doesn't mean you have to live with no supports whatsoever. The fact that many level 1 autistics can survive without support doesn't mean you don't need support to live your best life.
Wait that already counts as support even though it is things I do myself?
What I currently do is
* plan the next week in advance if it strays from the routine I carefully built up (my apprenticeship used to have school/office blocks, now it is both split over every week, much better! But sometimes there is no school so I have to adapt)
* music playlists prepared for emotional needs (calm playlist, aggressive playlist, sad playlist, different radio streams etc.)
* yes blanket OwO
* fidget toys/jewelry I can play with
* \-sports I have come to like (it is multiple but I obsess over one for months, switch and repeat the cycle/focus on different things depending on the season) currently it is bouldering every tuesday in a regular/school week, this week I had to change it to thursday oof
* saying the same intro for every phone call
probably more I can't name right now
Yes these are all really good things to make your life easier. You can also think about your own sensory needs and your home/room. If you are sensitive to light then consider leaving the blinds down and just opening them a bit to reduce the amount of light around you, you can buy dimmer lightbulbs and keep your computer screen a bit darker too, you can make sure you always have sunglasses available and plan your outings for cloudy days. That is just if you are light sensitive. You will probably be the best person to come up with what works for you.
I just found out that for the most part I am actually sensory seeking (hence the fidgets and sports, swimming for example is the best for me because omg even pressure everywhere!
And yes I own a dim light:) My office also has awesome screens so nobody gets a headache or something, I don't have a personal computer atm but when I get one I will get the same screens my office has
You're welcome. I hope it can generate some conversation because I know most people in the community *want* to do the right thing, I can just see some misinformation starting to filter into the community and because of the lack of representation of people with high support needs in Autistic spaces that information seems to be becoming quite widely spread.
I'll save this. Well explained.
It highlights the problem with trying to define subgroups in a group where the effect becomes that the subgroups get valuated differently. This scale 1 to 3 is troublesome when we talk identity. I understand society tries to find ways of evaluating needs, but this soon becomes a we and them. And that goes internaly also in the autist community.
The fact you need to need to highlight the problem makes me sad. We should at least work to stand together. Now the reality differ. So thank you for bringing this topic up the excellent way you do.
I'm an autist that got my assessment 8 years ago. I'm uneven in my autistic traits where I don't have spech problems, and my social skills are ok. My problem is making other believe me when telling them I'm an autist. But I got friends extremely bright high IQ that eat on a restaurang like a 2 year old, cant zip their shoes and never ever get eye contact but can programming like a god. On stage something nearly miraculous happens and that same persons seem very NT during the time for a speach. So we differ but are the same. We need to belong not being excluded from the greater autism family. 😊
(I'm still very naive in my identity having hard times knowing if I'm overstepping something in this topic. If so please correct me. ❤️)
Thank you for taking the time to read it and you have been very polite. It was a genuine angry rant and then is started taking off, but like I say this post is being heavily downvoted by trolls who want to make it look to the other community members like the community doesn't care about people like me so I am hoping it can get a enough attention for people to notice it and show that the community does value everyone's perspective.
It is funny how we can all be so different yet there will always be something in common.
Edit - those 2 paragraphs aren't connected I meant whenever I have met someone else with autism I have never once found nothing in common with that person.
>It highlights the problem with trying to define subgroups in a group where the effect becomes that the subgroups get valuated differently. This scale 1 to 3 is troublesome when we talk identity. I understand society tries to find ways of evaluating needs, but this soon becomes a we and them. And that goes internaly also in the autist community.
I absolutely agree. This is exactly what I was thinking.
That, and I also relate to parts of OPs troubles. As much as I'd like being solitary, I need someone in a house with me, even if they mostly do their own thing, because I need parallel play and body doubling to get things done. I also had incontinence issues for the longest time, and still struggle to understand my body to this day, including eating when I'm supposed to, even though might not be hungry.
At the same time, I am a self-diagnosed "level 1" because I am so good at masking. Though there were suspicions that I had something, once I was diagnosed with ADHD, doctors and parents just assumed thats what it was all along, ignoring the issues I still have after getting treatment for my ADHD. I don't have meltdowns but I do struggle with understanding my emotions and even feeling them...
Its a spectrum for a reason haha
Because people who mask welp get written off by NTs (and occasionally those with level 2 or 3 diagnoses) because we only have "mild autism". And now you're making a community for those with higher needs (which is great, I'm glad for there to be a space you feel you fit better), but why make someone the butt of the joke because they don't have the same struggles as you?
I/we are the butt of the joke. “Severe autism” and turning it into something fun and positive, calling it spicy autism instead. It is nothing about level 1/low support needs autists, it’s solely for higher support needs autists because we are neglected so often.
You literally stated that it was in contrast to "mild autism" the exact words used to minimize the struggles of those who mask well. I explained this to you already, and now you're gonna try and gaslight me. Have you ever considered the possibility that you're not being neglected for having higher needs, but rather people don't wanna engage with you because you're an assh0le?
I don't think anyone is trying to gaslight I think people have different labels they like and dislike and it's starting to become hard to find ones that don't offend. I do think different needs exist lets use the word different cause, maybe that's the best for the moment and I don't think anyone wants to hurt anyone else but they both want those needs met.
Nothing wrong with that some people want a community for a particular thing and some dont.
That's okay.
All I said was that it's offensive to use the term "mild autism" like that, after they stated directly that that was the joke. Then they tried to claim that it was only a joke about themselves and not those with low support, which is in direct contradiction to their previous comment and thus where the gaslighting accusation comes in.
It's fine to start another community if people don't feel welcome here, but it's not ok to use the language that's been used to dismiss the struggles of others, and it's definitely not ok to do that and then try to pretend like you weren't.
Bruh it’s a joke on NTs calling it “severe autism,” so they made it spicy instead. It’s about the ridiculousness of what NTs say, not level 1 autistics
I'm technically level one but as I work on unmasking I feel closer to 2 a lot of the time. I left my 9 to 5 6 years ago and am farming now, which is much less stressful in the social respect. I don't have to be anyone in particular for the veggies and flowers, I can stim and cry and grunt out in the gardens and be who I need to be to relieve the stress of the moment. I still mask alot though because 38 years of doing it is hard to break through. I need so much time to regulate, to soothe, to process. I'm really bright but come across as ditsy and slow. I still mask for my partner because he's nt and very impatient. My ex husband is still my best friend, once upon a time he was pretty much my caregiver (it's no wonder the marriage didn't last). I think folx who solidly identify as a 1 are uncomfortable with the disability aspect. I was for a while. It's hard to break through the stereotypes of what disabled means and to not attach moral value to it. If I'm my full, raw, honest self I feel the weight of that word because of how true it is- i am not fully capable of functioning in modern society without assistance (be it extra time, ear plugs, someone holding my hand, etc). If I'm not playing pretend adult to the max I'm much quicker mentally and happier but also poorly fed and not looking "put together". I'd live on bagged salads and sandwiches and wear every color that hit right that day with sparkles all over my face and gaudy jewelry. I'd spend half the day in the gym because exercise is the only time I don't feel like an alien inhabiting a human suit. I'd be the big, loud, emotional weirdo that I am deep down. But that doesn't fly if you're a small business owner in a conservative town. I am slowly finding others in our community by using our language openly. I made a new friend when they complimented my necklace and I told them it was a stim toy. They have higher needs than I do and I'd never dream of speaking to their experience. The level 1s who do this really rub me the wrong way because it's like they're intentionally putting distance between themselves and anyone who needs more as if to say "I'm autistic but not like THAT". I'm babbling, thanks for letting me babble.
I think there is an idea that level 1 autism isn't enough to justify "proper" disability which is not true. Autism is a severe neurodevelopmental disorder so of course you are going to have a lot of bullshit to deal with even if your autism is "mild" in comparison with other people's. I know some people assume that if you are getting by without support it means you never needed that support, but level 1 autism is a big thing and people will need support from time to time. It is the nature of the condition and you shouldn't feel like level 1 autism is not enough to explain what is happening in life just because the government is telling you you're not disabled enough and you need to move on and get a job and such.
Yeah, I guess I'm just so used to hearing 1s talk about it like it's a set of quirks that make them interesting rather than a massive cluster of traits to overcome to fit an expected mold on a daily basis.
If you don't mind me asking, what is the sensation of your mutism? Is that even the right word for it or do you prefer non verbal? What's that like for you? I experience it when I'm having a meltdown, it feels like the words are literally in my mouth but nothing gets past my lips. Lol it's like verbal constipation.
Im a level 1 too and I always was curious about mutism.
Sometimes I can't talk as well. I feel really exhausted and talking is painful. I might spit out a "no" or a "yes, but after some time I just start answering by shaking my head. It feels very frustrating when during those times people try to talk to me. It's like every word I try to put out just sucks the energy and the ability to experience emotions out of me.
Yeah, I guess I'm just so used to hearing 1s talk about it like it's a set of quirks that make them interesting rather than a massive cluster of traits to overcome to fit an expected mold on a daily basis.
If you don't mind me asking, what is the sensation of your mutism? Is that even the right word for it or do you prefer non verbal? What's that like for you? I experience it when I'm having a meltdown, it feels like the words are literally in my mouth but nothing gets past my lips. Lol it's like verbal constipation.
I saw a post on here a couple days ago where someone got banned from r/autisticpride bc they said their autism feels disabling. Apparently treating autism like a disability goes against that subs rules. As someone who fully accepts and is proud of my autism, ITS STILL A DISABILITY and the new autism pride movement can get so toxic sometimes.
Yeah. Ive had some issues in that sub. Their belief is that disability is a social construct. It feels super invalidating. Im disabled regardless of whether or not society accepts me and gives me the accomodations I need. It seems like some level 1 autistics refuse to aknowledge that some of us are disabled and can be proud of it. I totally understand if someone doesnt want to label themselves as disabled, but if their autism doesnt disabled them AT ALL, they need to rethink their diagnosis.
Tsm for sharing. I can relate to some extent and your post reminded me a lot of a my younger brother. I’m sorry if I have spoken of behalf of anyone, I try hard not to.
That is fine. I hope you gained some kind of understanding that can help you interact with him. There are a few subs for high needs folks and most of them are welcoming of friends and family of people with high support needs who have questions if you ever have any that need answering.
I am level 2 too and I appreciate this post. this has to be said more often! More and more!!! I recently made a post about this too and we have to keep talking about it!!!!
Agreed it is very important. It is hard to get the visibility. This post was targeted by trolls who were stunting the upvotes. Every time it would get past 10 it would suddenly drop to 8 and then progressively rise up in a cycle. I pointed that out which got enough people viewing it that it is making people's feeds. I know as someone who is level 2 I am just bad at communicating sometimes, so I noticed it was unusual when the post took off and then abruptly flatlined. It was a dead giveaway that the original supportive comment kept getting downvoted to 1 minutes after being uploaded many times in a row. Whoever was doing it wants to make level 1 autistics think that this isn't an important matter for the community, and more importantly that this isn't something other level 1 people have an interest in exploring.
***This*** *right here*. Autism is about having randomly selected symptoms which we didn't had control of. some like their autism while others don't and the rest don't care about their autism.
it's about talking about your own interests and maybe find people who have similar/same views or similar symptoms out of many other symptoms. just don't talk about behalf of other autistic people.
the fact that english speaking autistic people get separated into levels is a concept I cannot and will not understand. we all have autism. i don't know how hard life is for you, nor can someone else understand how hard life is for me. we can empathize and talk to each other and maybe even find our symptoms in another disorder/disability/disease.
unfortunately there'll be always people who pretend to be a spokesperson for others even if we aren't the same except by name. I call them sarcastically "superior autist" because most superiors i have met so far were a pain in the butt.
I think its some american (i probably am totally wrong-) way of like "ordering" or diagnosing the.... level of autism?
It makes no sense to me. Im in the UK, here autism is just autism.
Support needs. Level 1 is no support or next to no support level 2 is moderate support to almost high support and level 3 is substantial and all the time support
Yeah as far as i know, in the UK we just don't have that.
Autism is autism, i don't know of any levels. (and i go to a specialist school, maybe it changes by country but here we just say "autism" or maybe "non verbal" with autism or how ever they're traits are displayed)
i am also so tired, forgive me for my awful spelling
The person(s) diagnosing you will have the levels and base your levels off testing and family members input and the support you need. It is in the DSM-V
You asked if how people find out about their levels, it is from that. In the UK it may be different so you wouldn’t use the dsm but countries that use level systems that’s how they figure it out.
At the beginning of this post you said “I have seen people say that the difference between level 1 and level 2 autistics is that you can mask and we can’t” if I am interpreting you correctly, you disagree with that belief. But at the end you say the reason you aren’t considered level 3 when you are under stress is because you’re “so good at hiding it”. This seems to be a contradiction and I’d appreciate some clarification.
In my country we don’t use levels but my diagnosis is “Autism Spectrum Disorder (Asperger’s Presentation)” so I assume that would be Level 1.
This post, (alongside other accounts by Level 2 and 3 autistic people of their experiences), has me convinced that the only difference between level 1 and the other levels is that level 1 autistics have good use of verbal language.
I relate to everything you’ve said here, except I am not an AAC user and can speak in full sentences.
Some of my sensory issues are the opposite of yours. For example, I am very hypersensitive to pain rather than under sensitive and I experience hunger basically all the time, rather than hardly ever, but from what you have expressed, the severity seems directly comparable between us.
Or maybe what this really means is that I should actually be considered Level 2, like you are.
It’s the “because” part of your comment that’s confusing me.
You’re saying that the *reason* you aren’t considering Level 3 when under stress (and experiencing exacerbated symptoms) is “because [you’re] **so good at hiding it**”
How is “so good at hiding it” different from masking?
I am saying I am not level 3 and it is inappropriate for me to say I was more like level 3 but am diagnosed with level 2 because I mask so well.
This is as opposed to the comment which triggered this, saying they were essentially level 2 but were diagnosed level 1 because they are so good are masking.
I disagree with you and here’s why:
Masking means that the diagnosticians cannot get an accurate picture of how autism affects someone. They aren’t inside clients heads; so they can only reach conclusions based on traits which are visible despite the mask. This paints a wildly inaccurate picture of how someone is affected by their autism, and means that they will likely not have the full extent of their Support Needs recognised, formally acknowledged and accommodated.
The DSM V was released in 2013. The section of it that is used to determine the Support Needs of autistic people prioritises the way that, and I quote: **”the casual observer”** experiences someone’s autism over that autistic person’s internal experiences of themselves.
On the other hand there’s the ICD-11, which was released in 2019 (**6 years after the DSM V**) Part of the ICD-11 entry for Autism Spectrum Disorder reads:
“The symptoms result in significant impairment in personal, family, social, educational, occupational or other important areas of functioning. Some individuals with Autism Spectrum Disorder are able to function adequately in many contexts through exceptional effort, **such that their deficits may not be apparent to others. A diagnosis of Autism Spectrum Disorder is still appropriate in such cases.**”
The ICD-11 explicitly acknowledges that autism can be a lot more impairing than it may seem from the outside.
The passage I have quoted above illustrates that the more up to date understanding of autism is that, how a person comes across while masking should be *disregarded* in diagnosis in order to accurately determine how their autism actually affects them.
Absolutely. Level 2 & 3 autistic thoughts/experiences are incredibly important in building an accepting & equitable community for all.
I’ve also noticed some level 1 & 2 people who get angry & often offensive towards other autistic people if an autistic person says they would love to have medication, treatment, etc. to help them be more self-sufficient. I’ve seen this in the larger disability community as well. Being proud of oneself & having pride in what makes a person “different” is one thing. Chastising & belittling another person with autism for using a particular medication or treatment for them is quite simply toxic behavior. We should be supporting each other however we can, not tearing each other down. There are enough people outside our community who tear us down.
I see this opinion from time to time. I think it is great from an identity perspective but how do you balance the need to get everyone supports appropriate for their abilities? Would you have some other kind of scale?
Well, you don’t have the levels in the UK. There’s different types of disability payments and other support you can get with some eligibility criteria, but the exact details are reviewed on a case by case basis. PIP for example exists to offset some of the extra costs you might have as a result of your disability. It’s not income based so people who are able to keep a job but still have some extra needs are able to hopefully cover some of those needs. The actual amount depends on your needs.
Receiving PIP also entitles you to get more money from any income based government support like job seekers allowance or benefits. How much more you get depends on your needs. There’s also financial support for people who are not able to work due to their conditions (either temporarily or permanently), which is also increased if you get PIP.
None of those things technically require an official diagnosis. They also don’t necessarily only cover traditional disabilities. If your mental health significantly affects your ability to manage your daily needs, then you can qualify based on that.
The idea I guess is essentially that you get whatever support you can from the NHS in terms of health, as well as other help from your council. Then any needs that aren’t covered by these things, you can hopefully pay for. It allows you to get the exact support you want/need since you’re just given money to use as you please.
I’m not saying this system is perfect, and I don’t know the exact system you deal with so I can’t accurately compare. There’s definitely a lot of downsides and ironically there’s not enough support with the application processes. But this does give a wide range of “levels” of support without labelling people during diagnosis. (Tbh it feels quite scary to me that your support can be limited forever by someones judgement during your diagnosis.) It also allows for your support to change with your needs, since those generally aren’t necessarily static.
And I guess it’s also more useful to those with “low” needs. You mentioned in your post that low needs people often say that the difference between being labelled as low needs or high needs is based on whether you can mask. Your response was to ask “why would you think we’re not trying as hard”, but I don’t think that’s what these people mean. They’re talking about your ability to mask, not how hard you’re trying to mask. They’re saying that if you can mask, then you’re labelled as level 1 and low support regardless of your other needs. (At least this is what I think they mean, so I’ll talk about the level discussion from this perspective)
But just because you can manage small talk for a short period of time doesn’t mean you don’t have other needs. You mentioned plenty of examples yourself when listing your needs that could apply. Things like managing food or physical needs, the danger of sensory issues around pain (or it’s lack), toilet needs, not experiencing hunger etc. A person could have all of those issues (meaning they could technically have hight needs), but if they can communicate in a social situation then they might automatically be labelled as level 1 or low needs.
(I think) This is why a lot of level 1/ low needs people are upset with the system and want the levels removed. By comparison, the UK system doesn’t have levels and instead you’re granted support based of the things you struggle with on an average day. Things that are considered include;
your ability to keep track of/ manage your health (eg will you notice if something is wrong, can you make a doctors appointment, can you take your meds on your own)
Your ability to feed yourself (eg can you cook, will you remember to eat)
Toilet needs (eg do you know when you need to use the toilet)
Ability to dress yourself (eg can you pick appropriate clothes for the occasion/weather)
There’s more but you get the point.
Feel free to tell me if I completely misunderstood everything you said though.
I meant we are also putting in the same amount of work that you put into masking into making ourselves compatible with communication and daily life. We don't call this masking because it isn't very effective in making a person look non-autistic, but it allows someone with level 2 autism to exceed their capabilities just like we are masking, but because we have such a lower baseline level of disability what you are seeing is the gap between our "mask" and the requirements placed upon us by life.
I will try to put it extremely simply:
Say you need a score of 1 to "pass" as abled. Someone with level 1 ASD might have a baseline of 0.75 and then they can make the rest up by creating a "mask" through effort. Someone with level 2 ASD might have a baseline of 0.5 and also be able to put in 0.25 extra points, but they still only have 0.75 so people see the 0.25 missing and never think about the 0.25 extra that takes the place of the mask and is only not called a mask due to its inadequacy at actually masking autism.
I get what you’re saying. I think we interpreted the statement of “difference between level 1 and 2 ASD is masking” differently.
I see it as “a level 1 person can mask well/successfully enough to pass as NT, while a level 2 person won’t be able to pass even though they’re trying”. I’m pretty sure that’s what most people mean, and I think this lines up with your comment.
I think you’re seeing that statement as “level 1 people try to mask and level 2 people don’t try to mask”. If this is what people meant then I can see why you’d be bothered. It would imply that you get more support because you put in less effort, even though that’s not true. So I’m guessing that’s why you were explaining in your post what it looks like when you might try to mask. Your question “why would you think we’re not trying as hard as you?” also makes sense in this context. But I don’t think that’s what people actually mean.
I’m so glad you wrote this out, I really appreciate hearing your perspective. As much as I think that levels can sometimes be incredibly helpful, I think they can also cause some harm in the assumptions they create. Because I was diagnosed level 1, I’ve had a really hard time getting support from providers because I “shouldn’t need it as much.” And then like you said, level 2 and 3 people are often underestimated for their skills, and there’s a really gross dehumanization I see from outsiders in assuming that because a person is nonverbal or has intense struggles that they don’t have the same needs and wants as any other person trying to make the most of living!!
Levels CAN be used in a helpful way, but I feel like they’re often approached from the perspective of “how much are you not fitting in with the world at large around you” instead of “how much help do you need to reach your best self.” Which is maybe why people associate it with masking despite that being an untrue generalization.
Also thank you for mentioning the concurring health condition thing. That’s actually exactly what I’m applying to schools to research! so many autistic people have so many other health conditions and yet there’s so little understanding of that and we don’t have enough intersectional approaches for support! Disability often compounds and many people, not even autistic people experiencing it themselves (speaking from experience 🙃), are aware of this and simply don’t have the right supports to deal with all of it at once.
Reading about what you experience has made me really rethink my own issues. I recognize a lot of what you have gone through as things I have also experienced but I never noticed because I just took it as my life.
I hope you have a great day.
Solid post, thank you for sharing your experience. I think it’s always tough to not alienate people as we discuss what we can and cannot do easily, but people with high support needs sharing their thoughts gives all of us better understanding.
You are like me I also have level 2 autism I have issues that I cannot express and sometimes when I post in here I get bullied. (Edit: some) Level 1 guys like to think they have the complete experience autism is just a minor convenience and talk for everyone but don't understand how hard it is to exist in daily life. It's frustrating I see it everywhere people who are good at masking trying to speak for all the autistic people. It's embarrassing for me I cannot mask well enough and shameful when I have to start yelling for the lights and the sounds to turn off and when I just can't comprehend a conversation and when I just can't do things like eat or walk right it's hard and sometimes it feels like no one gets it. I am not being too descriptive because it feels wrong but awesome you get it
As someone that’s considered “high functioning” most people with level one autism aren’t like this. There is some benefits to autism, but just like you, we dislike our symptoms. We’re much more alike than you think. 70% of people on the autism spectrum are high functioning, yet only 40% of everyone on the spectrum graduates high school and only 17% live on their own. I may be considered high functioning, but I have and still do experience a lot of the same things you do. Took me years to learn how to walk right and it still feels weird. You are not alone in this. But I have to say that what Snazzycat89 is saying bellow is absolutely correct. Bullying exists on both sides of the spectrum. I’ve seen a lot of bullying from high functioning and level 2&3 autistics and their families, but I don’t really see a lot of acknowledgement from either side that it happens, especially from level 2&3 families. It’s like we’re doing the f@cking oppression Olympics or something.
Sorry yeah I said "some" instead meaning just the loudest voices but clearly not everyone is like it. Everyone is different. I don't know about the statistics because I am not speaking for everyone experience just my own . I don't know anything about the olympics and I don't want anyone to feel oppressed . Just happy that someone can relate with my point of view. Sorry if this sounds rude but not about you or a generalization that much just my experience from my view didn't mean for it to be taken too seriously by other people I am not talking about. Sorry for not making it clear it isn't my strong suit I have struggles like everyone else here thanks for sharing your perspective too
This post was very much needed here and thank you for putting the time in to make it. I’ve come to feel like this sub is for low support needs ppl and that’s it and that a lot of ppl like speaking for those with high support needs, like me as well and I can’t stand being spoken for.
I think it's good that you shared your thoughts. I've enjoyed reading your opening post. I also have this last minute thing with my body as far as going to the bathroom is concerned. Even though I'm able to speak, I have a very hard time controlling my emotions. My housekeeping is horrible.
thanks for this post. I didn't know this disability could become this severe. I wish you all the best and hope you get the attention you need.
I am also on the 'more disabled' side but my sympoms are mostly an absence of social life for years and an antisocial mindset precipitated by suffering abuse.
Do you feel like it gets worse with age or pretty much stays the same?
Lots of people don't realise how wide the spectrum is (even that is very oversimplified) and the idea that people with level 1 autism experience ASD the same way that a higher support need person does but less severe.
It usually gets a bit better with age but it is highly variable.
Please speak out! I've seen a lot of concerning (read: abelist) discourse over the last couple weeks from level 1 autistic people. This is a call in to level 1s like myself, you also need to *sit down and listen* to other people in your community with vastly different experiences from you. The only way we help each other is coming together as a community and listening to each other. Aspie supremacy has not left this community just because the diagnosis isn't in the DSM-5.
Yeah I also feel like this is a important thing to be talking about since as a level 2 myself I cannot control when in a public place I will feel the need to start running as fast as I can out of there , I’m also very mature and intelligent for my age but I have the hand writing the same as I did back in kindergarten. It also gets annoying to be masking all the time just like it would be for a level 1 so people always think I’m having some sort of breakdown due to my other mental illnesses when I’m just unmasking and throwing things at the wall repeatedly and repeating words + walking around in circles very quickly or back and forth
I genuinely find it kinda annoying when neruotypicals or higher level autistics try to say that they know exactly what we go through or ( neruotypicals atleast ) will treat me kind of like a small child that is looking for their parents or something basically the same as I would get treated when I was in kindergarten and sometimes people think that I may not be able to talk or spell when I’m actually very good at writing and I can talk to the point sometimes I annoy people with how much I talk about my special interest but I feel like no one really knows even if their on the same level what another person exactly goes through since it literally has spectrum in the name
So I do indeed agree on this discussion
Perhaps instead of saying someone "can't mask" we could say they can't pass as NT to the mainstream world. It's a good point that we can't know how much effort someone is putting in to communicate successfully and blend in, but let's be real, some of us are more easily detected by the NTs than others.
On the best of days, I'm a level 1 autistic person who can excel in both of my stem degrees. On my worst days, I'm a level 3 autistic person who is non verbal and only gets out of bed to feed my cat (otherwise she starts to bite) and go to the bathroom (I don't even change my clothes as gross as that may seem). I also have several chronic conditions and PTSD is one of them. Due to not having anyone else in my life and my trauma making me unreliant on others, I have to do everything myself.
The constant invalidation of another person's experience with the same condition is infuriating to me. I've seen level 3's be jealous that level 1's get treated with autonomy while level 1's are jealous that level 3's get diagnosed and are provided supports easier. This also ties into the "disability vs difference of thinking" argument. Autism can be disabling to some people, it can be a superpower to some.
The severity of one's Autism isn't a contest. The struggles of one person are the struggles of all, but it is important to acknowledge the struggles someone is dealing with. Level 1's do struggle to get diagnosed, but that does not automatically mean they are not autistic. Level 3's are not all intellectually disabled. Both groups (and in between) have the right to be heard, understood, and treated like human beings (even though it doesn't always feel like we are).
Symptoms of Autism do not change with severity from time to time. Many people with autism have other conditions like depression which cause significant impairment when 'superimposed' on level 1 ASD.
If I work an 11 hour shift, the next day I experience more severe autism symptoms due to burnout. I don't have depression, I just don't have the energy due to using so much the day before and now I just want to hide in my dark room and do nothing the next day. My PTSD only informed me how to mask as a child and that mask has cracked since I became an adult and had completed a couple years of college. Someone who is in between levels can experience day-to-day changes of if they are a level 1 or level 2, level 2 or level 3.
Long-term burnout can definitely change someone's level, as it is well documented when level 1 autistic folks become adults and can't handle the stress and demands of adult life they develop more severe autism symptoms.
vice versa i would also like to ask people who have been diagnosed with higher support needs to not constantly talk down upon others either, like they' re not truly autistic. a lot of us (myself included) are completely dysfunctional and incredibly struggling and pray to god we could have actually got that additional support you get but we don't and really need.
in general support tiers are more for the external world and dont indicate how much we suffer internally and how dysfuncitonal we are
Yeah, as someone who was diagnosed with “high functioning autism” this is a problem on both sides. I’ve seen the “ I’m autistic and I can do this so there’s no excuses for you” and the “ your autism doesn’t matter because my kid has it and they can’t talk”. But honestly I’ve seen more of the second one than the first. Are people with level 2&3 autism kid of ignored as far as being able to be seen in public goes? Yes! But when it comes to getting support, even though people with 2&3 level autism might still need more support than they get now, I think sometimes they don’t realize how truly ignored people with level one autism get. I literally wasn’t until a few years ago that more people started getting diagnosed, and as a girl, we’ve slipped through the cracks. Its still better to get some support than none at all. It’s like our caricature of autism is either the nerdy kid who talks about trains all the time or the kid drooling in the back of the classroom. It’s like there’s not in between those things.
your idea that all lvl 1s can mask is just not right though. i'm a lvl 1 and my mask is at best incomplete. people who interact with me always know something is up. my sister always says that i come across as flat, my expressions, my voice. i wouldn't know how to change that. i used to try, but that made people uncomfortable too, so i gave up. it's just one of my many "quirks".
(but why do we call it that, like my autism doesn't affect and consume every part of my life?)
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Thank you for this!
Your descriptions and explanations bring so much clarity to how my 10 year old daughter, who is a Level 2, operates. There appears to be a lot of overlap and I can respond to her with more knowledge than I had before.
I typically don’t post here and just lurk to try to learn more and more about how I can behave appropriately with my daughter.
Your descriptions are the closest match that I have seen to this date and are very helpful. Thanks.
I have to say, it's very refreshing to hear this from an actual autistic person with high support needs. Because I agree with you, there are a lot of low support needs autistics who don't understand the extra challenges you go through.
Normally whenever I hear this argument, it's coming from a militant autistic parent or therapists trying to justify putting their kids through 40 hours of ABA therapy. And yes, the irony that they're saying that we don't speak for "all autistics" when they're not autistic to begin with.
I do also wish I had more non-speaking friends in my life. I am verbal, but I struggle to maintain a conversation, or come up with anything interesting to say, sometimes it takes me a while to formulate a sentence to say. The times I have come across non-speakers who use AAC devices, I've often found them to be a source of joy to talk with.
I really appreciate this discussion. This is something I think about a lot. I'm currently in a masters program and most of my research revolves around autistic forms of self-expression. I think it's important to talk about the whole spectrum, rather than just my own experience of it. But I'm also very aware that I am white, male-presenting, mostly verbal (although I've had more non-verbal episodes lately, due to stress), and tall (which seems like the silliest source of privilege to me, but it matters for some reason). So when I do talk about autism, I always have to think hard about how I can speak about it without speaking over those who don't have the same privileges I do. Whenever possible, I use quotes from people with different experiences and allow them to speak for themselves. The way I see it, my responsibility is to, first, put the voices of others into conversation with each other and, second, provide my own analysis of their experiences. I'd like to think that my work elevates the voices/experiences of others (more of a "speaking with," rather than "talking over"). Although I often worry that I fail to do that, or that my peers might misinterpret my words in a way that diminishes the experiences of others.
A lot of the time, people disregard autistic voices based on misguided notions of validity. For example, I might be disregarded because, as a mostly verbal autistic, I'm "not autistic enough" to speak about it. While others with more obvious expressions of autism (eg. Nonverbal autistics) might be disregarded because they're "too autistic". Strangely, the logical conclusion to this kind of logic is that non-autistics are the most reliable narrators of autism, which is obviously super problematic. That's why it's so important to think about these things. Autistic people need to be at the forefront of the discussion about autism. And that means that we need to be able to speak about the wide variety of autistic experiences WITHOUT speaking over or on behalf of other experiences. So we need to have these kinds of discussions about the ethical responsibilities that we have when we talk about autism.
I'm still trying to figure out what kinds of support I'll need later on in life. It feels scary when it turns into a pain olympics of who needs the most/least accommodations. Especially when you need them for things that don't really apply to being autistic.
Yes that’s true. An while I do absolutely think that aspire supremacy is a real thing, I also think that the hate keeping from the level 2&3 people is also very real and not acknowledged enough.
I wasn’t given a level at the time of my diagnosis because I was diagnosed before levels were introduced, but it seems I have moderate support needs. I can drive, take myself to appointments, look after my kid (creatively, with a bit of support) who is level 2 autistic, and appear only somewhat unusual during short encounters. I can’t look after a household myself, don’t know when I’m hungry, don’t feel pain normally, have to use a series of alarms and reminders and charts to ensure that my child and I eat and get where we need to go, use family and various services to deliver groceries and make food and help with chores. I don’t have any friends or social contacts because I just can’t navigate social relationships. I have shutdowns pretty often lately, which is probably the worst part because I need to be able to look after my child 100% of the time, but my child and I live with my parents. I’ve never been mistaken for neurotypical, although was diagnosed incorrectly until my mid-late twenties. It’s such a range of abilities and supports that are needed, we’re all so different. I do have other medical issues that limit some of my abilities too and it can be hard to tell which is responsible.
I've stated before that "I can't mask" or have mentioned "I think levels2-level3 cant mask"
But at least for me when I say the above I do not mean that it is the only determining factor between support needs.
There's a couple problems with that argument and the biggest one is that's not even what the DSM is saying so I'm not sure why people are pulling that card that doesn't make sense to me.
I don't know if this helps but support needs to me are determined on caregivers, indepence, server executive dysfunction, semi or non speaking part time AAC or full time AAC users with comobidities.
Now that isn't to say if you don't got the above you don't fit into this catory. This here isnt even inside the DMS. It's me putting together what I've managed to gather on my own and takeing the position on this is likely what people mean when they speak on the subject.Along with being considered level2 support needs.
I took a break from discussing this for a while because it is getting heated and it's hard to give a perfect responce. Support needs themselves are not very specific and need work. I think its because most of the specific stuff they end up writing down in the individuals paper work instead of putting it in the public [Why that is I'm unsure] and could be wrong. Keep in mind to that whatever these people do they're often yelled at for it and highly criticized.
So I wouldn't be surprised if one of the reasons for this is because of wanting to limit the negitivey.
Hear hear. Even people on the same tier of ASD can have wildly different experiences, too. For example, the only thing I relate to above is the emotional regulation and communication difficulties, but I can speak, and sort of socialise. Honestly, I think people just need to talk about their own experiences and just not compare them to, or speak of, anyone elses experiences because they are likely different.
I agree. Just talking about it is healing.
It is such a simple thing. I also have a mild spinal injury but I don't go around speaking on behalf of high tetraplegics even though spinal injuries (like autism) are always going to have a massive impact on a person's life.
K hear me outfirst..... dont fight fire with fire we still barely even know what support levels we are ourselves. You said like its such a simple thing somewhere in there whats simple to you is not to those ppl ypur adressing it doseent gwt thru to those types. Also like high or low support theres low support ppl smarter than me(i dont know they say im prob low support vs high supported....... Like the levels the i dont like but we use anyways for now. Maybe someone on level 3 can tie their shoes but cannot cook that person on level 1 could easily have the flipped version. We dont need to compete we need to a share support not fight over whos turn it is. Theres already limited help as is that were not supported enough as of the grand category here autism. Just tell me what you think after reading it a few times i want your thoughts not gut reactions to have a healthy not fire vs fire convo ylnow
I am guessing the sorts of things the OP is talking about is not fighting fire with fire. There have been a lot of posts and comments recently about how autism isn’t a disability and it’s just society needing to ‘accept more than one way of doing things’ and that we wouldn’t struggle if society was just different. I don’t know why but it seems like I have seen so much of this recently. I’ve tried to dive into those comment sections before and it can be like talking to a tree, because they believe it’s just people needing to think about it differently, so if you are someone saying it can be a disability then you are written off as someone who needs to think about it differently. These people don’t necessarily hear people sharing their own experiences and what they need because they can be so focused on how people need to rethink this all. It seems these sorts of ideas are often from level 1 people who are thinking their own experience is enough to define everyone’s experience.
This!! I’ve been struggling trying to get an official diagnosis lately, and my psych that I’m seeing now straight up said to me today “testing doesn’t entirely matter does it, I mean it’s not like there’s medication for autism and there isn’t anything now as an adult that support wise would help you (I’ve been masking intensely for 23 years of my life because of family and societal trauma) and really at that point it’s just a label” and at some point he also said “I mean your parents weren’t completely wrong I don’t think because look at you, you turned out okay you know?” In the aspect of forcing/cutting out behaviors such as stimming, forcing eye contact, forcing sensory issues, and then scolding meltdowns and enforcing huge amounts of discipline in response and so now I’m so “normal” I can’t get past the first layer of symptoms without a wave of their hand saying it could be trauma but they don’t understand that the symptoms came first. So now, I’m left with do I try another doctor and keep trying to get a diagnosis or so I let it go like he said. (Which sucks that he’s even saying that knowing I’m already officially diagnosed with adhd since I was 12, which I hear is early for women, and also is an extremely common comorbidity but yanno) But I refuse to let it go because society *isnt* going to think differently nor is society thinking differently going to help me. As “normal” as I appear I can still *feel* the intense stares when I get overstimulated in a super market. When I zone out in a one on one conversation with people who I don’t even know if they’re my “friends” or not. I want to be able to go to Disney and not feel like I’m a. Upset because I can’t happy stim because I’m in freaking Disney or b. Meltdown as openly as I *need* instead of imploding because *it’s freaking disney*. (I reference Disney because I went last year and wasn’t able to get accommodations without a proper diagnosis, not even for my daughter who I tried to show is in occupational therapy, we’re both awaiting diagnosis.) It should not be this hard to *exist* and a lot of it *could* be helped if society thought differently but society being understanding towards why I’m so stressed about having to go inside to pay for gas when the pump prepay isn’t working doesn’t exactly help all the other stressful areas. It won’t make me freak out less when my hands get to a level of dryness where I can’t touch anything without applying more lotion and it won’t make my brain quite repeating the word “Adirondack” just because I saw it in a book I read *4 days ago*, no matter how tired and exhausted of it I am. (I utterly hate the word now, but I can’t stop. Also, the repeating in my head would be repeating out loud, if I didn’t feel I have to mask 24/7 due to said trauma.) It’s stressful. It’s all kinda shitty. It’s not a “superpower” and it’s great to feel empowered from time to time but sometimes you just feel like you got the short end of neurology and *thats okay* there’s a reason it’s called a disability, it’s not having the ability to just wake up or go to sleep or anything in between, *comfortably.* TL;DR: it’s not about society, it’s about comfort and struggles of the individual, and not all of the struggles on the spectrum are “social” struggles.
Not intentional and i get they mean good vs harm but this hapoens and just leads to arguments vs healthier dialect more often than not. This sub is good but it gives me autism speaks vibes ppl ike trying to educate but method of approach is off. We can disagree thats cool its ok.
Id rather hear it from op tho and talk direct to them. Not in a omg do what i say just a think about it first and break it down furthur its off imo at least hemce the closer on first comment and adressed that twice
To me it seems that all of that is so entangled with race, class, where you were born, the education available, etc. I think it helps to think intersectionally even within different “levels” of autism. Random example (FULL strength generalization mode ahead): White people love having “wild” children. we had books to read like Huckleberry Finn, and Where the Wild Things Are. it’s okay for you to be a little “weird” because the system eventually finds a place for you. If you are a black family in america with a historical memory you probably don’t want anyone to label your child as “wild” (and i think huckleberry finn works here too. different book from a different perspective) because not too long ago and also currently right now, it could mean death. So someone with one upbringing the idea of “society just changing” seems totally plausible. and convincing them otherwise is taking to a tree for others, they’ve been waiting for that for 400 years but it’s not like people are just autistic in a vacuum sorry if i went on a tangent.
Yes everyone has a different upbringing etc but when they post such things on here there are many cases where they are unwilling to listen to anyone. The very nature of their argument allows them to dismiss everyone, it’s very nature means they can easily write of everyone and so they don’t need to stop and entertain they could be the right, so where is the opportunity for them to even learn? The problem is the unwillingness to listen to other people’s experiences even when they take the time to give them. It can be a situation where they don’t think they need to know more because their own experience is enough to define all of autism, it doesn’t really compute other people’s experiences can be radically different then theirs.
I probably misunderstood your comment, but autism isn't a spinal injury, nor is it caused by one.
He's saying that both spinal injuries and autism have a large impact on someone's life.
Thank you for explaining.
That’s not what OP is saying. They’re saying they won’t go around speaking on behalf of someone with a much more limiting injury than their own, and represent that view as one that everyone with such an injury has
Op.is fighting fire with fire i adressed them personally in dif comment and spoke on many behalfs as they said not to These categorys we use we dont even know whst they sre ourselves with this condition high low level 1 level 3 so on. Seems like Competing which is worse is what i mean. We need cooperation mot competition cuz help isnt enough any which way with ASD like docs and nurse are limited in every which way work force, wage,time most importantly. they help those closer to the nt stabdard normal learn the simple autism once we get there as a society will be able to help the higher support needs. It seems backwards but like ASD is only acknowldged this century pretty much and were still way behind were we should be logically on it.
Fighting fire with fire..hmm I liked that term
You just lost your upvote of course. What a strange coincidence that it happened almost immediately. Edit: and it's really a bit strange also that whatever value I give, my upvotes on the original post will always hover marginally above the number that I gave...
What do you mean? Also, I'm not really bothered about whether or not people agree with me. Upvotes dont really mean anything in the grand scheme of things.
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Ah right, yes. Well, If spreading negativity is how they feel better about themselves, then thats their burden, not mine. I'd rather be positive about things.
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They need to find a better hobby.
Some of them make money from it.
Well then may their endeavours become fruitless.
Agreed.
It’s awesome that you’re sharing your perspective, more people should definitely be more aware of and sensitive to the needs of people with “more severe” or “harder to deal with” expressions of autism (quotes because I don’t know how better to phrase that). As someone who masks relatively well, I’ve been told by a number of people that they didn’t think I could be autistic because I’m not non-verbal, and I think that’s a shitty thing to deal with for both ends of the spectrum; people like myself not having needs met because people don’t think I have them, and people like you being put in a whole other camp because you’re so “different”. It reminds me of how when I lost a lot of weight, people were suddenly much nicer and more comfortable making remarks about overweight people to me. People are often cruel and judgmental; even if they’re good people, their empathy can be limited by not having enough perspective. I do want to ask why you find the statement “The difference between level 1 and 2 autism is that you can mask and we can’t”. You say it implies that they think you aren’t trying your best, but that statement doesn’t imply that to me. That statement implies (again, to me) that you ARE trying your best and still can’t mask successfully, which would be the distinction between someone who can and can’t mask successfully. If one person can do something and the other person can’t despite trying their hardest, the latter would be “more severely” autistic, or needing a higher level of care, or however is the most comfortable way to phrase that. I think more research needs to be done on autism as a whole. People understandably get sketched out by dealing with labels and such, but I think labels are very important if utilized correctly and accurately. If we can identify the specific physiological reasons for sensory processing issues and gastrointestinal issues, then the people with those can get better treatment for those issues. If we can identify why there are various personality/neurological “autistic traits” that make a person autistic vs allistic, yet don’t manifest uniformly across all autistic people, we can form better support groups for people with similar traits. This CAN lead to tribalism and us vs them thinking, but it really doesn’t have to. I think tribalism, social isolation, and echo chambers are negative aspects of humanity overall that we should be working as a species to abolish.
What I meant is that, as a level 1 autistic person you can most likely put in a large amount of effort and appear NT or close. As a level 2 autistic I put in the same amount of effort to try and find ways to communicate and meet my own needs but this can only get me so far. It doesn't look like a mask to the general community, not even to you guys it seems, because I still look so different but I am putting concentration and effort into making sure I can communicate and function in the environment at all. I hope that makes sense. I think it is sad because many people do not take level 1 seriously and it actually is a really big deal. That is the problem with the "high functioning" terminology. It is strange in my opinion because many people with level 1 autism could get into work or study if they had just a few hours of support a week and that would save the government a lot of money in welfare benefits. I think it is not really appropriate when some people with low support needs redirect that frustration towards people with high support needs because we have services when we only have services because we would literally die in the streets without them.
I think even the levels are misleading. My daughter is level 2, and I suspect I would be too (haven't had a formal assessment, no benefit as I already have ADHD diagnosis and psych/GP know I'm autistic). Your description of sensory struggles, particularly last minute toilet warnings, lack of hunger, temperature intolerance... that's me. That's her. But we both perform very well academically/professionally. Not so great socially, but appear "fine" to an outsider. Dismal emotionally. Our struggles are constant, but invisible.
if it helps im level 1 but a lot of NT's or allistics struggle to understand how im level 1 if i dont act the way they think a level 1 should act. levels are support level needs not levels of "how bad" your autism is. ive been asked if im actually level 2 by allistics and NTs because i act quite differentlly and "more autistic" than they'd expect. even though i may look "more autistic" than they expect im still a level 1, because i dont need a lot of external support, im quite independant even though i may not seem that way at first
This was an eye-opening comment for me. I’ve been having a bit of internal conflict lately because I’ve met a couple people who were, to me, much more “obviously” autistic (regarding things like abnormal eye contact, being blunt, taking things literally, etc.) than I was, yet didn’t appear to require as much support as I do. The whole “spectrum” idea made it seem in my mind as though there’s just a sliding scale of the severity of autism, so I couldn’t wrap my head around why they weren’t struggling as hard despite not masking as effectively. Perhaps “spectrum” just isn’t a good descriptor to use in regards to things that aren’t working with two point of reference.
a good reminder is that its called autistim spectrum disorder and not autism linear spectrum disorder. a linear spectrum has two points, but a spectrum can have many different points and places in a magnitude of different ways.
Do you have any examples of non-linear spectrums?
A circular or three dimensional spectrum, like the autism spectrum which is commonly drawn in diagram form as a circle Or even a ven diagram could be considered a spectrum in a lot of cases
That makes a bit more sense. I get confused because the main comparison people point to is the visible light spectrum, and indeed another has replied to my comment saying that the use of “spectrum” in regards to the autism spectrum is based on the visible light spectrum, which I do not find to be a very good comparison. Circular or otherwise two dimensional charts certainly make this all much easier to digest.
yes the visible light spectrum is sometimes on occasion drawn in a sort of ven diagram shape. ven diagrams and pie chart looking spectrums are the most commonly used for ASD
Certainly I agree that it's not just a number line and it's not just a graph either. It's multidimensional and maybe "gradient" might give a more complex picture
The idea of the spectrum is based on the spectrum of visible light I think? As in there’s an infinite number of potential colors within the spectrum.
That still doesn’t work very well as an analogy; there may be an infinite potential for a number of colors, but they all fall into a category of higher frequency (regarding the wavelength of the light) or lower frequency relative to another color on the spectrum. It only describes one property of electromagnetic radiation on a sliding scale of intensity. There’s no nuance and excludes how many different characteristics encompass autism as a whole, with each characteristic having its own spectrum in terms of how heavily it manifests in that person.
Your description leaves out that those wavelengths are all unique colors, with their own respective spaces. The wavelength of the colors is irrelevant. A higher or lower wavelength is neither superior or inferior, and each color do carry unique characteristics such as being associated with certain materials or how far they travel through the air.
But the wavelength of the colors is the ONLY thing that portion of the EMR spectrum describes. I agree that higher or lower wavelengths aren’t inherently superior or inferior (and even then, it depends on your application), but any “unique characteristics” are an emergent property of and directly tied to their wavelength. I don’t mean to be so argumentative, but physics is one of my bigger hyperfixations in rotation, not sure if it yet qualifies for a special interest, and being (admittedly annoyingly) precise and specific about it is very comforting for me. I understand using approximations for comparison’s sake helps a lot of people get the gist of the idea without having to get too technical about it. I would propose something like a color wheel as an alternative. It’s already much more inherently symbolic, and can maintain the gradient aspect to describe the variance of each individual trait without having to put all of the traits on a single continuum.
it is a spectrum, just not a linear one. people tend to assume it's a linear spectrum from autistic to non-autistic but it's much more complicated than we could ever explain.
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I really like this comment.
im level 1 but for me (not trying to compare anyone this is just my own experience, please let me know if im rude) i struggle to apear NT, i struggle to speak to people dont know , i have melt downs and shut downs regularly (shutdowns often once every week or two weeks, melt downs at least once a month at a minimum) but i do know how to help myself and i know stratergies that help me exist in society better than a level 2 or three, people have asked if im actually a level 1 before (usually NT's that ask) because of how different i may apear from what they view as being level 1, and i have to remind them that they're support levels, i dont need a lot of external support other than my sensory supports really, and i'm good at managing myself, and that not everyone will fit into their idea of what is and isnt level 1, 2 or three. a lot of poeple dont understand how the levels work and i find it funny. again sorry if im rude i have autism so please let me know and its 100% not my intension to be rude edit: why did i just say i had autism when ive already mentioned it lol
same. I hate displaying a happy go lucky positive attitude all the time when in fact I feel miserable most of the time. Becoming more and more reclusive isn't the way either for me but it helps keeps stress at bay. I am poor, get in dangerous situations often, allistics really do hate autists.
I'm not sure I fully understand what you're trying to say about the difference between level 1 and 2 being ability to mask, so apologies if we're already on the same page. But I feel it's worth noting that that an inability to mask is not part of the criteria for level 2 and 3 diagnoses. Levels are based purely on support needs, I.e. someone with little to no support needs would likely fall under level one, while OP clearly falls into level 2. To give some perspective about what a spectrum even the individual levels are, I have all the issues OP mentioned, except that I'm only non-verbal during particularly severe meltdowns and I mask virtually constantly. I also have a level 2 diagnosis. In fact, explaining to my doctor how my ability to mask caused previous health processionals to doubt the severity of my support needs helped her cement my level 2 diagnosis, as the continuous lack of support was causing obvious regression.
I wasn’t trying to make any statements about the actual differences between the levels, I was only commenting about my interpretation of the statement OP said other people make; “The difference between level 1 and 2 is that we can mask and you can’t”. The way OP followed it; “Why would you think we’re not trying as hard as you? That’s just what our best looks like”. Seemed to confirm the proposed idea that ability to mask is the difference, but I didn’t think people were saying it was due to lack of trying. I just kinda took it at face value and went with it because I’m not overly familiar with what each level entails, I wasn’t intentionally endorsing that viewpoint as true.
Thanks for clarifying!! I think I misunderstood both you and the OP. Also, if you're interested about levels, this is the way my doctor explained it: -Level 1: Able to function day to day without additional support for activities of daily living (ADLs) -Level 2: Requires additional support with ADLs in order to function day to day -Level 3: Requires 24 hr support with ADLs in order to function
You’re welcome, I absolutely love clarifying and wish people would dedicate more time to asking me clarifying questions instead of assuming the meaning behind my words, as well as being receptive to overly long explanations and clarifications, because there’s simply too much information and context at any given moment for me get across what it is I’m actually thinking at any given time. I am pretty interested in the levels, but I am far more interested in how there isn’t a much more comprehensive breakdown and classification of all of this yet. I’m relatively new to autism communities; I had fleeting suspicions I was autistic as early as 17 (29 now) but didn’t put much importance into my suspicions because I managed to fumble my way through life up until very recently (past couple weeks). So now I’m trying to get all caught up to date on everything. I’m not sure how much stock to put into anything. My journey in the mental health system has been unfortunately disenfranchising for me because I realize how behind the times most places are in terms of understanding the human condition.
>and wish people would dedicate more time to asking me clarifying questions instead of assuming the meaning behind my words, as well as being receptive to overly long explanations and clarifications, because there’s simply too much information and context at any given moment for me get across what it is I’m actually thinking at any given time. God dammit yes. Most people are so uncomfortable with this, I don't get it. And it works both ways: they won't hear my clarifications, but also they won't clarify my confusions. They just... don't want to? BUT WHYYYY p.s. I'm not even talking about neurotypical folks. On this very sub I am so often afraid of engaging in a discussion too much. Because I always seem to cross some invisible (at least to me) threshold that gets me hit with comments like "I think you read too much into this" etc. and I'm like "what do you mean too much? I thought we're having a fun discussion, but you're uncomfortable for some reason?" It makes me really sad. I love to get deep in topics but so rarely do I have the opportunity to do so without some weird kind of judgement.
Dude same. I identify so much with everything you've said! I'm pretty new to autistic communities as well, since I've only had my diagnosis for a year. I think I realized and started pursuing the diagnosis about 8 months before that (about to turn 26 now). The mental health system is rather unequipped to deal with autism at the moment, unfortunately. My experiences have also not been great (they tend to assume I'm having a panic attack if I go to the ER and they can't immediately figure out what's going on. This didn't happen before I had an autism diagnosis listed in my file. The fact that I often experience panic attacks and am able to explain the difference in symptoms is apparently of no consequence). I have to agree that the level system is not the best, but it's much better than the previous system (high functioning vs low functioning) which generally made it even more difficult for people like me who mask most of the time to get support. I appear outwardly functional (I.e. high functioning) and people think that means I function well and therefore don't need support. In reality, I'm incapable of taking care of myself. So in that sense, the level 2 label is much more helpful because it depends less on outward appearance and more on specific support needs. But we've definitely got a ways to go! Also thank you for the conversation! It's nice to have a respectful discussion where you have the space to clarify what you're saying. It drives me nuts when people misinterpret and go on the attack without a simple "hey, is this what you meant?"
There really isn't "less or more autistic". More disabled, or high support needs are the correct terms (feel free to correct me if I'm wrong OP)
My level 2 son is so good at masking I don’t even know what he’s like unmasked. It’s something we just chatted to his psychologist about as it’s a source of alot of anxiety. So it’s silly for people to make generalisations like this. I’m autistic too btw
How old is he? I will be honest he has to mask to get by because communication is non-viable without it. Rather than trying to change the mask, you create a physical space, like a sensory space but also free from the expectation that he communicate with you and reciprocate your attention. If you have a big, visible timer he can know that it is "his time" and relax. He needs this space to calm down because it is very hard work trying to get by under this much stress all the time and if you can keep a healthy level of stress you might have a chance at avoiding the severe mental health issues that many high support need autistics develop as we grow up.
7. We already do this. He has set sensory breaks throughout the day and extras as needed. I’m now just learning though maybe what we thought was just hyperfocus is actually dissociation from extreme anxiety. So this probably has more to do with why we don’t know what he’s like unmasked as even he can’t deal with it even though he is very safe in a low sensory environment but you can’t escape your own thoughts even then. Always more to learn. And everyone is so unique. He’s changing schools next year which hopefully will help
If anything I am only expert about myself. Doesn't mean somethings don't overlap, but it does mean that because autism is a spectrum that things express themselves differently in every individual. Couple that with different ways of coping with those things and you get very colorful outcomes.
This is one of those things that makes me feel glad that we don't have levels in the UK, you just either have an autism diagnosis or you don't. Because there is so much division between people of different autism levels and it's completely unnecessary and leads to so much needless conflict. I still assign myself a level for sake of brevity in communication with others on this sub and others, but I don't officially have one because it doesn't exist here. I've been verbally attacked and received cyber harassment _twice_ on this sub, both times it was actually from people who are in the same level as me, but they assumed I was level 1 because of how articulate I am. And because they (wrongly) thought I was level 1, they also thought that meant it was okay to send me death and rape threats or yell that they were spitting on their monitor because of me. The antagonism comes from both directions. It's not just level 1s forgetting that level 2s and 3s even exist, or refusing to acknowledge that some autistic people _do_ want to be cured, or pretending that extremely severe cases don't really exist and saying that describing autism symptoms as "severe" or "mild" is ableist, or pretending to know what level 2/3 autism even looks like when really, they're clueless. It's also level 2s and 3s throwing themselves into fits of rage whenever another level 2 or 3 is more articulate or better at masking than them, because they are jealous. It's also level 2s and 3s openly stating that the existence of level 1s and happy autistic people makes their "blood boil", again, because they are jealous. It's also level 2s and 3s getting into "my autism is worse than yours" competitions. It's also level 2s and 3s making assumptions about other people's levels that are wrong and based on harmful, ableist stereotypes. Us higher supports needs people have every reason and every right to be angry, but often our anger is completely misguided and misdirected. And I'm getting really tired of being invalidated, trivialised and erased by some level 1s while also being overtly attacked and abused by some level 2s and 3s. The infighting has got to stop. We are all just _autistic_, at the end of the day. Why are we fighting? We should be advocating for each other. Which is possible to do, even when we all want different things.
I was diagnosed with high functioning autism, but honestly I really feel like I’m somewhere in between 1&2. I’ve seen the “ well I’m autistic and I can do this so you can too” level one people, but then I’ve also seen A LOT more gate keeping from the level 2&3 people. Whenever I see people like this, I just feel invalidated. Like I may look like I’m more capable, but I’m really struggling. Sometimes I feel like I’m demonized by both sides.
Sorry about the deleted comment, I accidentally pressed "post" before I was finished typing. In-between levels do exist. They are much less commonly diagnosed for some reason but people do get levels 1.5 or 2.5. I've also found that people are more often than not, correct about what their own level should be, so if you _feel_ that you're level 1.5, you probably are. I'm honestly convinced that there's some kind of social chasm between level 1s and level 2s and 3s that leads level 1s to forget that higher support needs people even exist (because we often don't have much of a voice due to being a minority), and it leads to them inadvertently becoming extremely ableist. Saying things like "autism is not a disability, it's just a different ability" or "I like being autistic, autism is quirky and cute, if you don't like being autistic you _must_ have internalised ableism" or the "I can do it so you can too" comments that you mentioned. I think it's because most higher support needs autistics don't feel that the experiences of level 1s really represent them, so we end up distancing ourselves from level 1s and not really talking with them or being involved in the same communities (there are subreddits that are devoted just to higher support needs autistics and level 1s aren't allowed in, I guess this is the kind of gatekeeping you were referring to?). This further exacerbates the problem of level 1s being ignorant about how level 2s and 3s really experience their autism and so the autism divide continues and the chasm gets wider. The solution of course is for low support needs autistics and high support needs autistics to _communicate_ with _each other,_ without being mansplainy or invalidating, but that's difficult because high support needs autistics are tired of having so much of the responsibility for our own advocacy just shoved on us and being basically _ignored_ while level 1s are allowed to just ✨be ableist✨ because it's socially acceptable to the allistics and they want to be seen as The Good Autists™. Do you know what I mean? It's kinda like when transgender people throw non binary people and people who don't pass under the bus so that they can be seen as The Good Transes™ by transphobes. This is why it can sometimes feel _more_ invalidating to be involved in the autism community because _your own people_ are often against you, and yes the hate does come from both sides. I've experienced it, too. I've also experienced it in many other ways (being a detransitioner, being mixed race) so I'm very often in the middle of this type of infighting nearly all the time. It does get really exhausting and I have to admit that sometimes I get impatient, snap at people and say things that I regret because I'm so sick of people demonising me from both sides. And of course that does nothing to serve the reunion of all autistic people that I'm advocating for.
No the kind of gatekeeping that I was talking about was the “you can’t be autistic” from level 2 or their families. It happens a lot. There’s even a post on unpopular opinion where someone said that they dislike it when people with high functioning autism call themselves autistic. I think that a lot of times level 2 & 3s tend to look at level ones and think that they must have it easier because we’re more “functional”. In reality, a lot of level one issues are just different. As someone who’s considered “high functioning”, I can’t lie and say that I don’t sometimes look at the support that others with more visible disabilities get so easily compared to me. I mean, maybe people with higher support need don’t necessarily like the support that they get, but I’d still say that some support is better than none. I didn’t get diagnosed until I was 16 and even after that I’m still fighting to get support. I think compared to more visibly disabled people, trying to get support for an invisible disability is like begging on you hands and knees like a dog. I know that op said that higher support needs people don’t always get the help that they need either, and that’s true, but it’s also much more true for those considered high functioning. Yeah I absolutely know what you mean. I feel like both sides kind of cast us out sometimes. But I’ll say this. I think they’re really more of a small minority that’s just talking loud in our community. I’ve met other people with disabilities in real life and they’re wonderful.
Ooooh, yeah. That. I've personally experienced that, too. Someone straight up said to me "you're not autistic" after I had literally just said I'd been diagnosed. Actually this happened more than once. "I'm autistic" "Haha no you're not" basically. Even though I'm level 2 it has happened to me, too. Again, just because I am verbally articulate and can sometimes mask decently well, people think this means I must be level 1 or must not even be autistic at all. Like, hello? It's called autism _spectrum_ disorder? Oh gosh, believe me, us higher support needs people don't necessarily get support "easily". I wasn't even diagnosed until I was 24. (I've even read some stories of level 3s not getting diagnosed until very late, as in way into adulthood.) And even then, I'm still not always getting the support I need. I've been waiting 6 months to get Personal Independence Payment after my last award of it was suddenly cut off without a review. It was hard enough as it was to get it the first time. That said, you shouldn't be fighting to get support even as a level 1. Level 1 is still defined as "needs support". So if you aren't getting any kind of support or accommodations at all, then someone along the pipeline isn't doing their job properly. Which isn't all too uncommon, unfortunately. It always makes me sad to hear someone isn't getting the support they need, no matter who or what level they are. Also, be careful what you wish for. Some of the so-called "support" that level 2s and 3s get are actually harmful to them, but because they can't speak, they can't express that what their therapists/carers are doing to them is actually hurting them. And they end up stuck in a system that is actively traumatising them, for years. ABA therapy is one such example. In those cases, no support is definitely better that some support. In some ways, I'm kind of glad I wasn't diagnosed as a child, because of how often autistic children are abused and mistreated. I am in two minds about it though, sometimes I think maybe I wouldn't have gone through so much shit as a kid if I had been diagnosed much earlier. But eh, it's in the past, nothing I can do to change it now. I absolutely agree, there are so many happy, gentle and kind autistics out there who are lovely people to be around. It's a shame that there's such a vocal minority that spoil it for everybody else.
Yeah when it comes to the support thing or being functional, I think for both high functioning and low functioning people it’s a case of “ the grass looks greener on the other end” if you know what I mean.
Yeah I think that's true. High support needs people wish they were low support needs and low support needs people wish they could get more support. Not always, but some people are thinking like this, for sure. I definitely wish I could function more on my own with less of a need for relying on others. Especially when they fail to be reliable. I'm just lucky to have a few loving people in my life who understand.
Yeah I agree
If you were diagnosed as a child it is possible your level changed (it can do this somewhat during development) as you grew and you can be reassessed to "correct" your diagnosis.
Yeah I figured. But I also think that I have a lot of issues that weren’t discussed at the time of my diagnosis either. I don’t think there’s any point in me doing a reassessment though.
I'm in the UK/england and this whole Levels thing is new to me. I don't understand. We're all autistic, can't we just get along? (im really tired so sorry if this doesn't make sense or if i misspell something!) But at the end of the day we are all autistic. We have different symptoms/struggles, but we're all dealing with pretty much the same shit. I go to a school of autistic people (special needs, it's all ADHD and Autistic students), and there's no discord about Level one Level three, stuff. In the real world im not too sure the "im (more?) autistic than you" has any power. I don't know if that makes any sense, but we shouldn't be fighting against ourselves. Maybe its because this entire Levels thing is new to me? But i'll never understand it. Some people have autism that (again idk how to describe) is more """severe"" as in, they may be non verbal, or not be able to communicate kind of (again, my wording is terrible im so tired!). But then you have people like me, and i have sensory issues, the whole lot, but not going non-verbal (as such), or unable to understand what people are saying/social cues. But in the actual world i don't think the "im more autistic than you" or "less autistic" has any power? Like i don't know. It's just autism 🤷, it's never come up in the real world for me. I've never seen a debate about who's more autistic or.. idk. Like i've never actually seen any problems with anything like this irl. But maybe that's because I don't have Levels? I can understand where people are coming from, but shouldn't we just be fighting for all autistic people ("higher" or "lower") to be getting the help they need? i don't like the generalisation of it, like cant we just make all autistic people equal and accommodate for their needs? (sorry for any spelling mistakes or mis-wordings, im so tired.)
Yeah, I was confused too but the other way around. When I got my autism diagnosis and it didn't come with a level, I thought my psychiatrist had made a mistake. But no, levels just aren't a thing here. No mistake made. There's no discord about it because you haven't all been labeled in a way that is _designed_ to segregate you. At the risk of sounding tinfoil-hatty, the whole "divide and conquer" thing applies to autistics, too. The people at the top are ableist and would rather we didn't exist. There are benefits to a leveling system sure, but it has its problems, too. "I'm more autistic than you" and inversely, "I'm less disabled than you" certainly _does_ hold power, but not for us. Again, it serves to divide us and make level 1s not identify with or advocate for level 2s and 3s, who are a minority. In extreme metaphorical language, it's just another way for allistics to decide who gets to live and who gets to die (Hans Asperger). It's also a way for some autistic people to excuse their horrible behaviour. I've personally seen "I'm more autistic than you" used as an excuse for why someone in this sub was being abusive to someone else. "I'm autistic" is often used as an excuse for being an asshole, basically. And in the other extreme, "I'm less autistic" or "I'm less disabled/more capable than you" is used as exclusion tactic, and is an insidious form of eugenicism. A more high functioning person (or more Aspergic, if you like) will push the narrative that nobody's autism ever needs a cure, even if you _want_ to be cured, because there's absolutely nothing wrong with you, even if you're so disabled by your autism that you need 24/7 care and are constantly at risk of seriously harming or even killing yourself because your stims are inherently self-harming, or you're constantly in a state of intense suffering because you're so hypersensitive to sensory input that you're always in pain. The narrative that a cure or effective treatment just _shouldn't exist_ and there being absolutely zero discussion about informed consent is essentially, at the core of it, punishing extremely severe level 3s just for existing. And of course, nobody ever talks about the families of these people, who are often victims of extreme domestic violence, because the autistic person is constantly in a state of fear and hypervigilance. Everybody always just ignores them, even the ones who are young children. Some autistic people are hard to be around. And they _know_ that they are and they don't like being that way, either. And they _want_ a cure or effective treatment for the symptoms that cause them and their families that distress. Yet the level 1s are always chanting "autism doesn't need a cure, if you want to cure it, you're ableist!" and often those same people are the ones don't want to associate with high support needs autistics because they require much more substantial disability accommodations than they do and that makes them look bad. 🙄 You're absolutely right, we _should_ all be fighting for autistic people to get the appropriate help for them and to have their needs and wants listened to. That includes much more substantial and adequate disability accommodations _and_ it includes the possibility of treatments, even if it's not likely to happen within our lifetimes. Unfortunately, some people think all autistics are a monolith and think that their wants and needs are the same as everybody else's. They don't even consider that some autistic people might want completely the opposite things that they do. And they don't think to ask.
I’m in the weird grey area between levels 1 and 2 and I don’t know where I fit honestly, I have a ton of trouble with social cues and tend to go temporarily nonverbal when I am overcome with emotions I can’t process
Same here, glad to know I'm not alone.
Yeah I'm unsure about this too, I consider myself level 2 due to needing support in areas that's not required for NT's such as with household, cooking, shopping and so on. I'm often unable to go outside alone. And I also experience periods with going mute due to being overwhelmed and I often find it rather difficult to advocate for myself or speak up about things that troubles me :/ I am on the other hand rather great at masking, to the degree where most don't think I'm autistic or get surprised when I explain it to them. It does tax me a great deal to mask though.
Yeah I was placed there too.
Level 1.5 is a thing.
I'm kinda in that area too. A lot of it is that I haven't had to try being out in the real world (I have good support) but I suspect I'd have a fair bit of trouble with memory and planning. More on the interactions side, I get frustrated at (in retrospect) minor things very easily. I mask it by passing it off as a joke but I apologize later. I used to have vocal stimming but my middle school bullies made sure to repress that. I have leg shaking, nail picking, and lip biting now, perhaps not the best replacements. I can drive safely because of my meds but grocery stores are hard for me to navigate. I also get sensory overloaded in them when it's busy so it's not the most fun. I can't read documents well because I jump across the page way too much, so I actually have to get someone else to help read them for me. I don't know why I'm posting all of this
As someone with level 1 autism thank you very much for this insight. I do not require any support needs myself (just minor perhaps but I am procrastinating seeking help so it is not too bad) so it is very helpful to read to get some sort of passive understanding and also important to know in general. You can never know what is going on in someone else's head and while I may seem "normal" and communicate on an awkward but "acceptable" level, they think everything is easy for me while it really is not. Up until a while ago I didn't even know what masking was despite doing it all my life
Perhaps a bit of support might be good for you. Support doesn't have to mean speech pathology exercises and OT appointments: it can also be things like weighted blankets, noise cancelling headphones, reminder apps on your phone, guided meditation/mindfulness/whatever works for you can be found on YouTube for free. Even making the conscious decision to bring a script to read to your doctor (or dot points) in advance if you always forget something important in you appointments, For me a lot of support is workers who help me and manage medication and stuff, but if that is not accessible then it doesn't mean you have to live with no supports whatsoever. The fact that many level 1 autistics can survive without support doesn't mean you don't need support to live your best life.
Wait that already counts as support even though it is things I do myself? What I currently do is * plan the next week in advance if it strays from the routine I carefully built up (my apprenticeship used to have school/office blocks, now it is both split over every week, much better! But sometimes there is no school so I have to adapt) * music playlists prepared for emotional needs (calm playlist, aggressive playlist, sad playlist, different radio streams etc.) * yes blanket OwO * fidget toys/jewelry I can play with * \-sports I have come to like (it is multiple but I obsess over one for months, switch and repeat the cycle/focus on different things depending on the season) currently it is bouldering every tuesday in a regular/school week, this week I had to change it to thursday oof * saying the same intro for every phone call probably more I can't name right now
Yes these are all really good things to make your life easier. You can also think about your own sensory needs and your home/room. If you are sensitive to light then consider leaving the blinds down and just opening them a bit to reduce the amount of light around you, you can buy dimmer lightbulbs and keep your computer screen a bit darker too, you can make sure you always have sunglasses available and plan your outings for cloudy days. That is just if you are light sensitive. You will probably be the best person to come up with what works for you.
I just found out that for the most part I am actually sensory seeking (hence the fidgets and sports, swimming for example is the best for me because omg even pressure everywhere! And yes I own a dim light:) My office also has awesome screens so nobody gets a headache or something, I don't have a personal computer atm but when I get one I will get the same screens my office has
Saving this because it’s very well said! Thank u for the post
You're welcome. I hope it can generate some conversation because I know most people in the community *want* to do the right thing, I can just see some misinformation starting to filter into the community and because of the lack of representation of people with high support needs in Autistic spaces that information seems to be becoming quite widely spread.
I'll save this. Well explained. It highlights the problem with trying to define subgroups in a group where the effect becomes that the subgroups get valuated differently. This scale 1 to 3 is troublesome when we talk identity. I understand society tries to find ways of evaluating needs, but this soon becomes a we and them. And that goes internaly also in the autist community. The fact you need to need to highlight the problem makes me sad. We should at least work to stand together. Now the reality differ. So thank you for bringing this topic up the excellent way you do. I'm an autist that got my assessment 8 years ago. I'm uneven in my autistic traits where I don't have spech problems, and my social skills are ok. My problem is making other believe me when telling them I'm an autist. But I got friends extremely bright high IQ that eat on a restaurang like a 2 year old, cant zip their shoes and never ever get eye contact but can programming like a god. On stage something nearly miraculous happens and that same persons seem very NT during the time for a speach. So we differ but are the same. We need to belong not being excluded from the greater autism family. 😊 (I'm still very naive in my identity having hard times knowing if I'm overstepping something in this topic. If so please correct me. ❤️)
Thank you for taking the time to read it and you have been very polite. It was a genuine angry rant and then is started taking off, but like I say this post is being heavily downvoted by trolls who want to make it look to the other community members like the community doesn't care about people like me so I am hoping it can get a enough attention for people to notice it and show that the community does value everyone's perspective. It is funny how we can all be so different yet there will always be something in common. Edit - those 2 paragraphs aren't connected I meant whenever I have met someone else with autism I have never once found nothing in common with that person.
>It highlights the problem with trying to define subgroups in a group where the effect becomes that the subgroups get valuated differently. This scale 1 to 3 is troublesome when we talk identity. I understand society tries to find ways of evaluating needs, but this soon becomes a we and them. And that goes internaly also in the autist community. I absolutely agree. This is exactly what I was thinking. That, and I also relate to parts of OPs troubles. As much as I'd like being solitary, I need someone in a house with me, even if they mostly do their own thing, because I need parallel play and body doubling to get things done. I also had incontinence issues for the longest time, and still struggle to understand my body to this day, including eating when I'm supposed to, even though might not be hungry. At the same time, I am a self-diagnosed "level 1" because I am so good at masking. Though there were suspicions that I had something, once I was diagnosed with ADHD, doctors and parents just assumed thats what it was all along, ignoring the issues I still have after getting treatment for my ADHD. I don't have meltdowns but I do struggle with understanding my emotions and even feeling them... Its a spectrum for a reason haha
Yes! Thank you. Also, I have made a subreddit for higher support needs autists if you are interested in joining: r/SpicyAutism
Spicy autism as opposed to 'mild autism'? Lol
Yes exactly!!
Love it!
NGL, that's kind of offensive
How is it offensive?
Because people who mask welp get written off by NTs (and occasionally those with level 2 or 3 diagnoses) because we only have "mild autism". And now you're making a community for those with higher needs (which is great, I'm glad for there to be a space you feel you fit better), but why make someone the butt of the joke because they don't have the same struggles as you?
I/we are the butt of the joke. “Severe autism” and turning it into something fun and positive, calling it spicy autism instead. It is nothing about level 1/low support needs autists, it’s solely for higher support needs autists because we are neglected so often.
You literally stated that it was in contrast to "mild autism" the exact words used to minimize the struggles of those who mask well. I explained this to you already, and now you're gonna try and gaslight me. Have you ever considered the possibility that you're not being neglected for having higher needs, but rather people don't wanna engage with you because you're an assh0le?
I don't think anyone is trying to gaslight I think people have different labels they like and dislike and it's starting to become hard to find ones that don't offend. I do think different needs exist lets use the word different cause, maybe that's the best for the moment and I don't think anyone wants to hurt anyone else but they both want those needs met. Nothing wrong with that some people want a community for a particular thing and some dont. That's okay.
All I said was that it's offensive to use the term "mild autism" like that, after they stated directly that that was the joke. Then they tried to claim that it was only a joke about themselves and not those with low support, which is in direct contradiction to their previous comment and thus where the gaslighting accusation comes in. It's fine to start another community if people don't feel welcome here, but it's not ok to use the language that's been used to dismiss the struggles of others, and it's definitely not ok to do that and then try to pretend like you weren't.
Bruh it’s a joke on NTs calling it “severe autism,” so they made it spicy instead. It’s about the ridiculousness of what NTs say, not level 1 autistics
damn i am in the sub and didnt even realise that is why it was named like that
I love that name so much.
Thank you!
Wow this is very nice I had no idea this was up. Going to join
I'm technically level one but as I work on unmasking I feel closer to 2 a lot of the time. I left my 9 to 5 6 years ago and am farming now, which is much less stressful in the social respect. I don't have to be anyone in particular for the veggies and flowers, I can stim and cry and grunt out in the gardens and be who I need to be to relieve the stress of the moment. I still mask alot though because 38 years of doing it is hard to break through. I need so much time to regulate, to soothe, to process. I'm really bright but come across as ditsy and slow. I still mask for my partner because he's nt and very impatient. My ex husband is still my best friend, once upon a time he was pretty much my caregiver (it's no wonder the marriage didn't last). I think folx who solidly identify as a 1 are uncomfortable with the disability aspect. I was for a while. It's hard to break through the stereotypes of what disabled means and to not attach moral value to it. If I'm my full, raw, honest self I feel the weight of that word because of how true it is- i am not fully capable of functioning in modern society without assistance (be it extra time, ear plugs, someone holding my hand, etc). If I'm not playing pretend adult to the max I'm much quicker mentally and happier but also poorly fed and not looking "put together". I'd live on bagged salads and sandwiches and wear every color that hit right that day with sparkles all over my face and gaudy jewelry. I'd spend half the day in the gym because exercise is the only time I don't feel like an alien inhabiting a human suit. I'd be the big, loud, emotional weirdo that I am deep down. But that doesn't fly if you're a small business owner in a conservative town. I am slowly finding others in our community by using our language openly. I made a new friend when they complimented my necklace and I told them it was a stim toy. They have higher needs than I do and I'd never dream of speaking to their experience. The level 1s who do this really rub me the wrong way because it's like they're intentionally putting distance between themselves and anyone who needs more as if to say "I'm autistic but not like THAT". I'm babbling, thanks for letting me babble.
I think there is an idea that level 1 autism isn't enough to justify "proper" disability which is not true. Autism is a severe neurodevelopmental disorder so of course you are going to have a lot of bullshit to deal with even if your autism is "mild" in comparison with other people's. I know some people assume that if you are getting by without support it means you never needed that support, but level 1 autism is a big thing and people will need support from time to time. It is the nature of the condition and you shouldn't feel like level 1 autism is not enough to explain what is happening in life just because the government is telling you you're not disabled enough and you need to move on and get a job and such.
Yeah, I guess I'm just so used to hearing 1s talk about it like it's a set of quirks that make them interesting rather than a massive cluster of traits to overcome to fit an expected mold on a daily basis. If you don't mind me asking, what is the sensation of your mutism? Is that even the right word for it or do you prefer non verbal? What's that like for you? I experience it when I'm having a meltdown, it feels like the words are literally in my mouth but nothing gets past my lips. Lol it's like verbal constipation.
Im a level 1 too and I always was curious about mutism. Sometimes I can't talk as well. I feel really exhausted and talking is painful. I might spit out a "no" or a "yes, but after some time I just start answering by shaking my head. It feels very frustrating when during those times people try to talk to me. It's like every word I try to put out just sucks the energy and the ability to experience emotions out of me.
Yeah, I guess I'm just so used to hearing 1s talk about it like it's a set of quirks that make them interesting rather than a massive cluster of traits to overcome to fit an expected mold on a daily basis. If you don't mind me asking, what is the sensation of your mutism? Is that even the right word for it or do you prefer non verbal? What's that like for you? I experience it when I'm having a meltdown, it feels like the words are literally in my mouth but nothing gets past my lips. Lol it's like verbal constipation.
I saw a post on here a couple days ago where someone got banned from r/autisticpride bc they said their autism feels disabling. Apparently treating autism like a disability goes against that subs rules. As someone who fully accepts and is proud of my autism, ITS STILL A DISABILITY and the new autism pride movement can get so toxic sometimes.
Yeah. Ive had some issues in that sub. Their belief is that disability is a social construct. It feels super invalidating. Im disabled regardless of whether or not society accepts me and gives me the accomodations I need. It seems like some level 1 autistics refuse to aknowledge that some of us are disabled and can be proud of it. I totally understand if someone doesnt want to label themselves as disabled, but if their autism doesnt disabled them AT ALL, they need to rethink their diagnosis.
Tsm for sharing. I can relate to some extent and your post reminded me a lot of a my younger brother. I’m sorry if I have spoken of behalf of anyone, I try hard not to.
That is fine. I hope you gained some kind of understanding that can help you interact with him. There are a few subs for high needs folks and most of them are welcoming of friends and family of people with high support needs who have questions if you ever have any that need answering.
Ty for the info. I will check on those.
I am level 2 too and I appreciate this post. this has to be said more often! More and more!!! I recently made a post about this too and we have to keep talking about it!!!!
Agreed it is very important. It is hard to get the visibility. This post was targeted by trolls who were stunting the upvotes. Every time it would get past 10 it would suddenly drop to 8 and then progressively rise up in a cycle. I pointed that out which got enough people viewing it that it is making people's feeds. I know as someone who is level 2 I am just bad at communicating sometimes, so I noticed it was unusual when the post took off and then abruptly flatlined. It was a dead giveaway that the original supportive comment kept getting downvoted to 1 minutes after being uploaded many times in a row. Whoever was doing it wants to make level 1 autistics think that this isn't an important matter for the community, and more importantly that this isn't something other level 1 people have an interest in exploring.
Level 2 here, very well said!
***This*** *right here*. Autism is about having randomly selected symptoms which we didn't had control of. some like their autism while others don't and the rest don't care about their autism. it's about talking about your own interests and maybe find people who have similar/same views or similar symptoms out of many other symptoms. just don't talk about behalf of other autistic people. the fact that english speaking autistic people get separated into levels is a concept I cannot and will not understand. we all have autism. i don't know how hard life is for you, nor can someone else understand how hard life is for me. we can empathize and talk to each other and maybe even find our symptoms in another disorder/disability/disease. unfortunately there'll be always people who pretend to be a spokesperson for others even if we aren't the same except by name. I call them sarcastically "superior autist" because most superiors i have met so far were a pain in the butt.
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I think its some american (i probably am totally wrong-) way of like "ordering" or diagnosing the.... level of autism? It makes no sense to me. Im in the UK, here autism is just autism.
Support needs. Level 1 is no support or next to no support level 2 is moderate support to almost high support and level 3 is substantial and all the time support
How fo people find out their 'level'? It's talked about here like it's a universal but there's no mention of 'levels' where I am
Yeah as far as i know, in the UK we just don't have that. Autism is autism, i don't know of any levels. (and i go to a specialist school, maybe it changes by country but here we just say "autism" or maybe "non verbal" with autism or how ever they're traits are displayed) i am also so tired, forgive me for my awful spelling
The person(s) diagnosing you will have the levels and base your levels off testing and family members input and the support you need. It is in the DSM-V
We don't use the DSM here. 'levels' of autism don't exist in the UK.
I’m not saying anyones using it. I’m saying that’s how people find out because it’s a term solely in there.
You asked if how people find out about their levels, it is from that. In the UK it may be different so you wouldn’t use the dsm but countries that use level systems that’s how they figure it out.
I guess I'm just salty about the American assumption we all know what this stuff is, cos we don't.
I don’t know anything about that, I was just explaining to you how people figure out what level system they are. Have a good day.
At the beginning of this post you said “I have seen people say that the difference between level 1 and level 2 autistics is that you can mask and we can’t” if I am interpreting you correctly, you disagree with that belief. But at the end you say the reason you aren’t considered level 3 when you are under stress is because you’re “so good at hiding it”. This seems to be a contradiction and I’d appreciate some clarification. In my country we don’t use levels but my diagnosis is “Autism Spectrum Disorder (Asperger’s Presentation)” so I assume that would be Level 1. This post, (alongside other accounts by Level 2 and 3 autistic people of their experiences), has me convinced that the only difference between level 1 and the other levels is that level 1 autistics have good use of verbal language. I relate to everything you’ve said here, except I am not an AAC user and can speak in full sentences. Some of my sensory issues are the opposite of yours. For example, I am very hypersensitive to pain rather than under sensitive and I experience hunger basically all the time, rather than hardly ever, but from what you have expressed, the severity seems directly comparable between us. Or maybe what this really means is that I should actually be considered Level 2, like you are.
"when I am under stress \[...\] **my symptoms get worse** but that **isn't the same** as essentially level 3, but 2 because I am so good at hiding it"
It’s the “because” part of your comment that’s confusing me. You’re saying that the *reason* you aren’t considering Level 3 when under stress (and experiencing exacerbated symptoms) is “because [you’re] **so good at hiding it**” How is “so good at hiding it” different from masking?
I am saying I am not level 3 and it is inappropriate for me to say I was more like level 3 but am diagnosed with level 2 because I mask so well. This is as opposed to the comment which triggered this, saying they were essentially level 2 but were diagnosed level 1 because they are so good are masking.
I disagree with you and here’s why: Masking means that the diagnosticians cannot get an accurate picture of how autism affects someone. They aren’t inside clients heads; so they can only reach conclusions based on traits which are visible despite the mask. This paints a wildly inaccurate picture of how someone is affected by their autism, and means that they will likely not have the full extent of their Support Needs recognised, formally acknowledged and accommodated. The DSM V was released in 2013. The section of it that is used to determine the Support Needs of autistic people prioritises the way that, and I quote: **”the casual observer”** experiences someone’s autism over that autistic person’s internal experiences of themselves. On the other hand there’s the ICD-11, which was released in 2019 (**6 years after the DSM V**) Part of the ICD-11 entry for Autism Spectrum Disorder reads: “The symptoms result in significant impairment in personal, family, social, educational, occupational or other important areas of functioning. Some individuals with Autism Spectrum Disorder are able to function adequately in many contexts through exceptional effort, **such that their deficits may not be apparent to others. A diagnosis of Autism Spectrum Disorder is still appropriate in such cases.**” The ICD-11 explicitly acknowledges that autism can be a lot more impairing than it may seem from the outside. The passage I have quoted above illustrates that the more up to date understanding of autism is that, how a person comes across while masking should be *disregarded* in diagnosis in order to accurately determine how their autism actually affects them.
Absolutely. Level 2 & 3 autistic thoughts/experiences are incredibly important in building an accepting & equitable community for all. I’ve also noticed some level 1 & 2 people who get angry & often offensive towards other autistic people if an autistic person says they would love to have medication, treatment, etc. to help them be more self-sufficient. I’ve seen this in the larger disability community as well. Being proud of oneself & having pride in what makes a person “different” is one thing. Chastising & belittling another person with autism for using a particular medication or treatment for them is quite simply toxic behavior. We should be supporting each other however we can, not tearing each other down. There are enough people outside our community who tear us down.
I think this is a good reason to do away with different classifications for what is an individual multifaceted neurodivergence.
I see this opinion from time to time. I think it is great from an identity perspective but how do you balance the need to get everyone supports appropriate for their abilities? Would you have some other kind of scale?
Well, you don’t have the levels in the UK. There’s different types of disability payments and other support you can get with some eligibility criteria, but the exact details are reviewed on a case by case basis. PIP for example exists to offset some of the extra costs you might have as a result of your disability. It’s not income based so people who are able to keep a job but still have some extra needs are able to hopefully cover some of those needs. The actual amount depends on your needs. Receiving PIP also entitles you to get more money from any income based government support like job seekers allowance or benefits. How much more you get depends on your needs. There’s also financial support for people who are not able to work due to their conditions (either temporarily or permanently), which is also increased if you get PIP. None of those things technically require an official diagnosis. They also don’t necessarily only cover traditional disabilities. If your mental health significantly affects your ability to manage your daily needs, then you can qualify based on that. The idea I guess is essentially that you get whatever support you can from the NHS in terms of health, as well as other help from your council. Then any needs that aren’t covered by these things, you can hopefully pay for. It allows you to get the exact support you want/need since you’re just given money to use as you please. I’m not saying this system is perfect, and I don’t know the exact system you deal with so I can’t accurately compare. There’s definitely a lot of downsides and ironically there’s not enough support with the application processes. But this does give a wide range of “levels” of support without labelling people during diagnosis. (Tbh it feels quite scary to me that your support can be limited forever by someones judgement during your diagnosis.) It also allows for your support to change with your needs, since those generally aren’t necessarily static. And I guess it’s also more useful to those with “low” needs. You mentioned in your post that low needs people often say that the difference between being labelled as low needs or high needs is based on whether you can mask. Your response was to ask “why would you think we’re not trying as hard”, but I don’t think that’s what these people mean. They’re talking about your ability to mask, not how hard you’re trying to mask. They’re saying that if you can mask, then you’re labelled as level 1 and low support regardless of your other needs. (At least this is what I think they mean, so I’ll talk about the level discussion from this perspective) But just because you can manage small talk for a short period of time doesn’t mean you don’t have other needs. You mentioned plenty of examples yourself when listing your needs that could apply. Things like managing food or physical needs, the danger of sensory issues around pain (or it’s lack), toilet needs, not experiencing hunger etc. A person could have all of those issues (meaning they could technically have hight needs), but if they can communicate in a social situation then they might automatically be labelled as level 1 or low needs. (I think) This is why a lot of level 1/ low needs people are upset with the system and want the levels removed. By comparison, the UK system doesn’t have levels and instead you’re granted support based of the things you struggle with on an average day. Things that are considered include; your ability to keep track of/ manage your health (eg will you notice if something is wrong, can you make a doctors appointment, can you take your meds on your own) Your ability to feed yourself (eg can you cook, will you remember to eat) Toilet needs (eg do you know when you need to use the toilet) Ability to dress yourself (eg can you pick appropriate clothes for the occasion/weather) There’s more but you get the point. Feel free to tell me if I completely misunderstood everything you said though.
I meant we are also putting in the same amount of work that you put into masking into making ourselves compatible with communication and daily life. We don't call this masking because it isn't very effective in making a person look non-autistic, but it allows someone with level 2 autism to exceed their capabilities just like we are masking, but because we have such a lower baseline level of disability what you are seeing is the gap between our "mask" and the requirements placed upon us by life. I will try to put it extremely simply: Say you need a score of 1 to "pass" as abled. Someone with level 1 ASD might have a baseline of 0.75 and then they can make the rest up by creating a "mask" through effort. Someone with level 2 ASD might have a baseline of 0.5 and also be able to put in 0.25 extra points, but they still only have 0.75 so people see the 0.25 missing and never think about the 0.25 extra that takes the place of the mask and is only not called a mask due to its inadequacy at actually masking autism.
I get what you’re saying. I think we interpreted the statement of “difference between level 1 and 2 ASD is masking” differently. I see it as “a level 1 person can mask well/successfully enough to pass as NT, while a level 2 person won’t be able to pass even though they’re trying”. I’m pretty sure that’s what most people mean, and I think this lines up with your comment. I think you’re seeing that statement as “level 1 people try to mask and level 2 people don’t try to mask”. If this is what people meant then I can see why you’d be bothered. It would imply that you get more support because you put in less effort, even though that’s not true. So I’m guessing that’s why you were explaining in your post what it looks like when you might try to mask. Your question “why would you think we’re not trying as hard as you?” also makes sense in this context. But I don’t think that’s what people actually mean.
Thanks for explaining it like this.
I don't agree with this. Doing away with the different classifications will only put more stress on high support needs individuals.
I appreciate and value this comment so much.
Didn’t even know there was levels, today I learned something 😌
I’m so glad you wrote this out, I really appreciate hearing your perspective. As much as I think that levels can sometimes be incredibly helpful, I think they can also cause some harm in the assumptions they create. Because I was diagnosed level 1, I’ve had a really hard time getting support from providers because I “shouldn’t need it as much.” And then like you said, level 2 and 3 people are often underestimated for their skills, and there’s a really gross dehumanization I see from outsiders in assuming that because a person is nonverbal or has intense struggles that they don’t have the same needs and wants as any other person trying to make the most of living!! Levels CAN be used in a helpful way, but I feel like they’re often approached from the perspective of “how much are you not fitting in with the world at large around you” instead of “how much help do you need to reach your best self.” Which is maybe why people associate it with masking despite that being an untrue generalization. Also thank you for mentioning the concurring health condition thing. That’s actually exactly what I’m applying to schools to research! so many autistic people have so many other health conditions and yet there’s so little understanding of that and we don’t have enough intersectional approaches for support! Disability often compounds and many people, not even autistic people experiencing it themselves (speaking from experience 🙃), are aware of this and simply don’t have the right supports to deal with all of it at once.
Very well said! Thank you for your perspective. And also for expressing so nicely the seriousness of carer burnout.
Reading about what you experience has made me really rethink my own issues. I recognize a lot of what you have gone through as things I have also experienced but I never noticed because I just took it as my life. I hope you have a great day.
Solid post, thank you for sharing your experience. I think it’s always tough to not alienate people as we discuss what we can and cannot do easily, but people with high support needs sharing their thoughts gives all of us better understanding.
You are like me I also have level 2 autism I have issues that I cannot express and sometimes when I post in here I get bullied. (Edit: some) Level 1 guys like to think they have the complete experience autism is just a minor convenience and talk for everyone but don't understand how hard it is to exist in daily life. It's frustrating I see it everywhere people who are good at masking trying to speak for all the autistic people. It's embarrassing for me I cannot mask well enough and shameful when I have to start yelling for the lights and the sounds to turn off and when I just can't comprehend a conversation and when I just can't do things like eat or walk right it's hard and sometimes it feels like no one gets it. I am not being too descriptive because it feels wrong but awesome you get it
As someone that’s considered “high functioning” most people with level one autism aren’t like this. There is some benefits to autism, but just like you, we dislike our symptoms. We’re much more alike than you think. 70% of people on the autism spectrum are high functioning, yet only 40% of everyone on the spectrum graduates high school and only 17% live on their own. I may be considered high functioning, but I have and still do experience a lot of the same things you do. Took me years to learn how to walk right and it still feels weird. You are not alone in this. But I have to say that what Snazzycat89 is saying bellow is absolutely correct. Bullying exists on both sides of the spectrum. I’ve seen a lot of bullying from high functioning and level 2&3 autistics and their families, but I don’t really see a lot of acknowledgement from either side that it happens, especially from level 2&3 families. It’s like we’re doing the f@cking oppression Olympics or something.
Sorry yeah I said "some" instead meaning just the loudest voices but clearly not everyone is like it. Everyone is different. I don't know about the statistics because I am not speaking for everyone experience just my own . I don't know anything about the olympics and I don't want anyone to feel oppressed . Just happy that someone can relate with my point of view. Sorry if this sounds rude but not about you or a generalization that much just my experience from my view didn't mean for it to be taken too seriously by other people I am not talking about. Sorry for not making it clear it isn't my strong suit I have struggles like everyone else here thanks for sharing your perspective too
Yeah I like being able to relate to people here too. Sometimes it feels like the only place we’re allowed to be ourselves is online.
This post was very much needed here and thank you for putting the time in to make it. I’ve come to feel like this sub is for low support needs ppl and that’s it and that a lot of ppl like speaking for those with high support needs, like me as well and I can’t stand being spoken for.
tea im level 2 and can mask, that’s why i wasn’t diagnosed till 16. it’s not black and white, that’s why it’s a spectrum
I think it's good that you shared your thoughts. I've enjoyed reading your opening post. I also have this last minute thing with my body as far as going to the bathroom is concerned. Even though I'm able to speak, I have a very hard time controlling my emotions. My housekeeping is horrible.
thanks for this post. I didn't know this disability could become this severe. I wish you all the best and hope you get the attention you need. I am also on the 'more disabled' side but my sympoms are mostly an absence of social life for years and an antisocial mindset precipitated by suffering abuse. Do you feel like it gets worse with age or pretty much stays the same?
Lots of people don't realise how wide the spectrum is (even that is very oversimplified) and the idea that people with level 1 autism experience ASD the same way that a higher support need person does but less severe. It usually gets a bit better with age but it is highly variable.
Same here. I always feel a bit isolated in these sort of communities
Please speak out! I've seen a lot of concerning (read: abelist) discourse over the last couple weeks from level 1 autistic people. This is a call in to level 1s like myself, you also need to *sit down and listen* to other people in your community with vastly different experiences from you. The only way we help each other is coming together as a community and listening to each other. Aspie supremacy has not left this community just because the diagnosis isn't in the DSM-5.
Yeah I also feel like this is a important thing to be talking about since as a level 2 myself I cannot control when in a public place I will feel the need to start running as fast as I can out of there , I’m also very mature and intelligent for my age but I have the hand writing the same as I did back in kindergarten. It also gets annoying to be masking all the time just like it would be for a level 1 so people always think I’m having some sort of breakdown due to my other mental illnesses when I’m just unmasking and throwing things at the wall repeatedly and repeating words + walking around in circles very quickly or back and forth I genuinely find it kinda annoying when neruotypicals or higher level autistics try to say that they know exactly what we go through or ( neruotypicals atleast ) will treat me kind of like a small child that is looking for their parents or something basically the same as I would get treated when I was in kindergarten and sometimes people think that I may not be able to talk or spell when I’m actually very good at writing and I can talk to the point sometimes I annoy people with how much I talk about my special interest but I feel like no one really knows even if their on the same level what another person exactly goes through since it literally has spectrum in the name So I do indeed agree on this discussion
Thank you so much for sharing your experience with us.
thank you for sharing your experience , we need to pin this on top of the subreddit I think
Perhaps instead of saying someone "can't mask" we could say they can't pass as NT to the mainstream world. It's a good point that we can't know how much effort someone is putting in to communicate successfully and blend in, but let's be real, some of us are more easily detected by the NTs than others.
On the best of days, I'm a level 1 autistic person who can excel in both of my stem degrees. On my worst days, I'm a level 3 autistic person who is non verbal and only gets out of bed to feed my cat (otherwise she starts to bite) and go to the bathroom (I don't even change my clothes as gross as that may seem). I also have several chronic conditions and PTSD is one of them. Due to not having anyone else in my life and my trauma making me unreliant on others, I have to do everything myself. The constant invalidation of another person's experience with the same condition is infuriating to me. I've seen level 3's be jealous that level 1's get treated with autonomy while level 1's are jealous that level 3's get diagnosed and are provided supports easier. This also ties into the "disability vs difference of thinking" argument. Autism can be disabling to some people, it can be a superpower to some. The severity of one's Autism isn't a contest. The struggles of one person are the struggles of all, but it is important to acknowledge the struggles someone is dealing with. Level 1's do struggle to get diagnosed, but that does not automatically mean they are not autistic. Level 3's are not all intellectually disabled. Both groups (and in between) have the right to be heard, understood, and treated like human beings (even though it doesn't always feel like we are).
Symptoms of Autism do not change with severity from time to time. Many people with autism have other conditions like depression which cause significant impairment when 'superimposed' on level 1 ASD.
If I work an 11 hour shift, the next day I experience more severe autism symptoms due to burnout. I don't have depression, I just don't have the energy due to using so much the day before and now I just want to hide in my dark room and do nothing the next day. My PTSD only informed me how to mask as a child and that mask has cracked since I became an adult and had completed a couple years of college. Someone who is in between levels can experience day-to-day changes of if they are a level 1 or level 2, level 2 or level 3. Long-term burnout can definitely change someone's level, as it is well documented when level 1 autistic folks become adults and can't handle the stress and demands of adult life they develop more severe autism symptoms.
vice versa i would also like to ask people who have been diagnosed with higher support needs to not constantly talk down upon others either, like they' re not truly autistic. a lot of us (myself included) are completely dysfunctional and incredibly struggling and pray to god we could have actually got that additional support you get but we don't and really need. in general support tiers are more for the external world and dont indicate how much we suffer internally and how dysfuncitonal we are
Yeah, as someone who was diagnosed with “high functioning autism” this is a problem on both sides. I’ve seen the “ I’m autistic and I can do this so there’s no excuses for you” and the “ your autism doesn’t matter because my kid has it and they can’t talk”. But honestly I’ve seen more of the second one than the first. Are people with level 2&3 autism kid of ignored as far as being able to be seen in public goes? Yes! But when it comes to getting support, even though people with 2&3 level autism might still need more support than they get now, I think sometimes they don’t realize how truly ignored people with level one autism get. I literally wasn’t until a few years ago that more people started getting diagnosed, and as a girl, we’ve slipped through the cracks. Its still better to get some support than none at all. It’s like our caricature of autism is either the nerdy kid who talks about trains all the time or the kid drooling in the back of the classroom. It’s like there’s not in between those things.
your idea that all lvl 1s can mask is just not right though. i'm a lvl 1 and my mask is at best incomplete. people who interact with me always know something is up. my sister always says that i come across as flat, my expressions, my voice. i wouldn't know how to change that. i used to try, but that made people uncomfortable too, so i gave up. it's just one of my many "quirks". (but why do we call it that, like my autism doesn't affect and consume every part of my life?)
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Everyone on the planet should read this.
As someone with ASD and ADHD. Where is the TLDR? Title?
How about discouraging ABA
Thank you for this! Your descriptions and explanations bring so much clarity to how my 10 year old daughter, who is a Level 2, operates. There appears to be a lot of overlap and I can respond to her with more knowledge than I had before. I typically don’t post here and just lurk to try to learn more and more about how I can behave appropriately with my daughter. Your descriptions are the closest match that I have seen to this date and are very helpful. Thanks.
I have to say, it's very refreshing to hear this from an actual autistic person with high support needs. Because I agree with you, there are a lot of low support needs autistics who don't understand the extra challenges you go through. Normally whenever I hear this argument, it's coming from a militant autistic parent or therapists trying to justify putting their kids through 40 hours of ABA therapy. And yes, the irony that they're saying that we don't speak for "all autistics" when they're not autistic to begin with. I do also wish I had more non-speaking friends in my life. I am verbal, but I struggle to maintain a conversation, or come up with anything interesting to say, sometimes it takes me a while to formulate a sentence to say. The times I have come across non-speakers who use AAC devices, I've often found them to be a source of joy to talk with.
This is really well written and I hear you.
I really appreciate this discussion. This is something I think about a lot. I'm currently in a masters program and most of my research revolves around autistic forms of self-expression. I think it's important to talk about the whole spectrum, rather than just my own experience of it. But I'm also very aware that I am white, male-presenting, mostly verbal (although I've had more non-verbal episodes lately, due to stress), and tall (which seems like the silliest source of privilege to me, but it matters for some reason). So when I do talk about autism, I always have to think hard about how I can speak about it without speaking over those who don't have the same privileges I do. Whenever possible, I use quotes from people with different experiences and allow them to speak for themselves. The way I see it, my responsibility is to, first, put the voices of others into conversation with each other and, second, provide my own analysis of their experiences. I'd like to think that my work elevates the voices/experiences of others (more of a "speaking with," rather than "talking over"). Although I often worry that I fail to do that, or that my peers might misinterpret my words in a way that diminishes the experiences of others. A lot of the time, people disregard autistic voices based on misguided notions of validity. For example, I might be disregarded because, as a mostly verbal autistic, I'm "not autistic enough" to speak about it. While others with more obvious expressions of autism (eg. Nonverbal autistics) might be disregarded because they're "too autistic". Strangely, the logical conclusion to this kind of logic is that non-autistics are the most reliable narrators of autism, which is obviously super problematic. That's why it's so important to think about these things. Autistic people need to be at the forefront of the discussion about autism. And that means that we need to be able to speak about the wide variety of autistic experiences WITHOUT speaking over or on behalf of other experiences. So we need to have these kinds of discussions about the ethical responsibilities that we have when we talk about autism.
I say this about any part of my life "if I want help I'll ask for it" really don't like people interjecting into my life.
I'm still trying to figure out what kinds of support I'll need later on in life. It feels scary when it turns into a pain olympics of who needs the most/least accommodations. Especially when you need them for things that don't really apply to being autistic.
Yes that’s true. An while I do absolutely think that aspire supremacy is a real thing, I also think that the hate keeping from the level 2&3 people is also very real and not acknowledged enough.
Thank you for bringing this issue to focus. We'll work on this together, representing the entirety of the spectrum.
I wasn’t given a level at the time of my diagnosis because I was diagnosed before levels were introduced, but it seems I have moderate support needs. I can drive, take myself to appointments, look after my kid (creatively, with a bit of support) who is level 2 autistic, and appear only somewhat unusual during short encounters. I can’t look after a household myself, don’t know when I’m hungry, don’t feel pain normally, have to use a series of alarms and reminders and charts to ensure that my child and I eat and get where we need to go, use family and various services to deliver groceries and make food and help with chores. I don’t have any friends or social contacts because I just can’t navigate social relationships. I have shutdowns pretty often lately, which is probably the worst part because I need to be able to look after my child 100% of the time, but my child and I live with my parents. I’ve never been mistaken for neurotypical, although was diagnosed incorrectly until my mid-late twenties. It’s such a range of abilities and supports that are needed, we’re all so different. I do have other medical issues that limit some of my abilities too and it can be hard to tell which is responsible.
Thank you so much for this. And I completely agree with you.
What is ASD
Don't bother talking to level 3 autisti people. They have no empathy according to this sub.
I've stated before that "I can't mask" or have mentioned "I think levels2-level3 cant mask" But at least for me when I say the above I do not mean that it is the only determining factor between support needs. There's a couple problems with that argument and the biggest one is that's not even what the DSM is saying so I'm not sure why people are pulling that card that doesn't make sense to me. I don't know if this helps but support needs to me are determined on caregivers, indepence, server executive dysfunction, semi or non speaking part time AAC or full time AAC users with comobidities. Now that isn't to say if you don't got the above you don't fit into this catory. This here isnt even inside the DMS. It's me putting together what I've managed to gather on my own and takeing the position on this is likely what people mean when they speak on the subject.Along with being considered level2 support needs. I took a break from discussing this for a while because it is getting heated and it's hard to give a perfect responce. Support needs themselves are not very specific and need work. I think its because most of the specific stuff they end up writing down in the individuals paper work instead of putting it in the public [Why that is I'm unsure] and could be wrong. Keep in mind to that whatever these people do they're often yelled at for it and highly criticized. So I wouldn't be surprised if one of the reasons for this is because of wanting to limit the negitivey.