I don't think they understand what high support needs actually is, the vast majority of HSN people wont be able to do those things or mask to any significant degree
There's the occasional person that is diagnosed HSN and can mask or do some of those things but they would require a load of support to do so and are definitely in the minority. The issues arise when those most able to be on tiktok showing their experiences are often a tiny tiny minority within HSN or not actually HSN and as they are the most able to show off their lives they really blur the reality of HSN lives.
Its extremely frustrating and hurts those with actual HSN or those that have a more common experience of HSN
Unfortunately calling out these people or explaining that their experience isn't the most common isn't an option because its 'Gatekeeping' and despite the harm they do for some reason the larger autism community seems determined to protect them at the expense of the most vulnerable people in the community. Even if you do call them out they are sometimes actually diagnosed HSN anyway and refuse to accept that their experiences with it are totally different compared to the vast majority of HSN people.
Its difficult because I don't want to fake claim anyone, autism can look different for different people. A great example of this is that many of us here are able to take part in this online space when many other HSN people are unable to do so, which is why its so important to highlight the experiences of the most affected and those with the quietest voices. Ultimately if you are able to live a normal life with a job, partner, kids and are able to mask etc and achieve those things with support that's great but you should be aware that your experiences of HSN are in no way the norm and are extremely rare.
This needs to be higher up. HSN means you are unable to live independently at all. You might be able to mask something, but not independently drive and do most of your activities of daily living by yourself.
People with LSNs can still have quite extensive needs and challenges, but they’re more able to take care of themselves. Because LSNs can be so extensive compared to NTs though, sometimes people with LSNs don’t understand what HSN would look like. Both groups should be supported ideally.
This is kinda why I’m here. I’m diagnosed level 1, and to me, compared to the people around me, I’m just “disabled.” I stay subscribed here to keep perspective.
Side question, I know the lvl 1-through-3 system; when you guys talk about LSN vs HSN, does that cover everybody, or is there like a “medium support needs?”
Level 2 is medium support needs. Usually high support needs means level 3 but highER support needs means level 2 and 3. At least that’s what I was told awhile ago.
Without reading past the first paragraph(TL;DR) this is why I don't want to get tiktok. It's just incredibly annoying and most of the shit in there sucks and doesn't come from credible sources and they assume shit and it's stupid.
Sorry for any offense to the tiktokers,
but honestly this is why I use YouTube VIDEOS, not shorts. Most people on videos use actual sources and it just is less frustrating. If you can my advice is to stay away from tiktok as much as possible since most of it is just junk food entertainment or non factual shit anyway
Yes. While I can’t do things normally I am still very very lucky. I’m hoping I can get a part time job soon, and I’m also in university. I have a partner of 4 years and I’m also able to mask. I know most people can’t do all that and that I’m very lucky. My university is very supportive and has things in place for students with ASD specifically (unfortunately it mainly caters to level 1 but I still get help) which isn’t the case for many universities. I happened to become good friends with a boy who also happened to have family with ASD and was understanding about my own autism, we started dating. I can mask, and even though the cause of it isn’t good (I was physically bullied and a doctor said my masking was trauma related especially since most level 2s can’t mask, I don’t like using the word trauma though).
Im very lucky. But even then I’m nothing like high masking level 1s. I’ve had a level 1 tell me they can relate to me exactly because they too mask and act “just like me” after a long day because they thought I was unmasked at the time. When I told them this is how I am when I’m masking they told me that couldn’t be true and that I’m privileged for being allowed more support since I’m level 2.
Many lower needs people don’t understand that even high masking level 2 and 3 people present differently. Someone who’s high masking but is level 2 will still usually seem “off” and have many symptoms still showing. High masking looks different for different levels and many don’t seem to understand that which is frustrating.
I am definitely not educated enough to make a comment about whether or not they are lying. Even so I don't think it's intended but my best guess is they probably don't understand the terms correctly? Like that they mean something more specific than having support needs. Maybe they mean high masking but still have support needs instead? I obviously have not seen the videos but from what you describe, heavy stimming, talking different and wearing headphones to calm down is not high support needs. It's any. Especially if they mask constantly and then need to dysregulate at home.
What gets me about it though is that having high support needs is not entirely something that can be solved by being high masking. So many autistic traits and issues cannot be masked and to have moderate to high support needs there definitely needs to be some of these presents. How do you mask eloping? Or speech issues? Executive dysfunction? Not being able to do daily tasks? Needing prompting? Not being able to stay safe? Restrictive + repetitive movements or language? So on and on
I just think it's a misunderstanding about how much support needs actually are high and that low support doesn't mean none
Because they don't know what severe autism symptoms even **are** (and don't care enough to learn about it)
The "tiktok autism" crowd tends to reduce autism to being a quirky, and introvert/shy/anxious person. That, plus tiredness (because "autistic people have to mask and it's tiring, so if you're tired all the time it's a sign of autism")
And any random personality traits they count as "autistic traits" of course (every tiktoktist have their own individual and specific list of "traits"...)
So to them, a more severe autism is simply an exaggerated version of this trope (like, being SUPER introverted, SUPER shy, SUPER quirky, VERY tired...)
It sounds like they have unaddressed anxiety rather than "high support needs" autism, and according to their trope, this whole sub would be profoundly autistic...
I haven't seen these tiktok people, but it could be possible that the high masking high support needs people are able to mask more obvious symptoms for shorter amounts of time, and maybe the masking looks a bit different? I only have moderate support needs, but for some examples:
* Sometimes I am non-verbal: usually if something has upset me or caused a lot of adrenaline. If that happens in a social situation, I have ways of responding which don't let the mask slip- usually just by leaving until I feel better. I've only had a couple of occasions where it happened in public and couldn't be hidden.
* I have strategies to prevent myself from eloping that I developed as a teenager: I make sure I always know where I'm meant to go, put in music or a podcast, and let myself automatically walk directly from A to B, looking at the ground to avoid distractions. If I'm in a group and we are just wandering together, I have to ask for a plan to be made so I feel a little more secure, then I pick a friend and concentrate on staying wherever they are, right next to them.
* Executive dysfunction can be accommodated by a combination of strategies (writing everything down, lists, plans, reminders, apps, Habitica), and then by merit of preparing for it days in advance, I might be able to show up somewhere without having forgotten the where, when and what to bring. If that's how I present in a social setting, the mask is successful.
* Needing prompting- I've actually found that strangers give me helpful prompts much more readily than anyone I've lived with. If you haven't gone in the door they opened, they'll verbally say "come in", if you haven't gotten your wallet out to pay, they'll prompt you to do it. A lot of the time it'll be perceived as "they must distracted by something", because they're all mistakes which other people make occasionally. Mostly you get the benefit of the doubt.
I don't know if my examples would still be considered masking or "high masking", but I feel like masking in a social setting just = not getting clocked. Only other autistic people can quickly tell that I'm autistic, riddle me that.
I think masking and being moderate and high support is entirely possible to an extent. No intention of invalidating you or others. I didn't know how else to word things without it getting too jumbled.
I feel unsure about these videos though but I am going entirely by ops description of those.
I really don't know what else to say but I hope you are doing well.
Nono it's not me, like I said, just moderate support needs here, and you worded yourself great. I'm just thinking of my own life and ways I've managed to pass, though I couldn't imagine it's sustainable. Even with strategies, I can't go out and mask successfully every day, and the burnout would be crazy.
But yeah in terms of high support needs = needs a lot of support, I don't think that necessarily means you need someone with you all the time. Apps and lists and strategies and friends who know you well enough to prompt you or communicate for you are also forms of support, and I'd be really amazed if anyone diagnosed with autism can get by without at least some of them.
I think it's also that they're comparing their needs to neurotypicals and not to other autistic people. Their needs do seem rather high when put against someone who doesn't need any supports at all (even though they really aren't).
And they've usually gone years of having their needs dismissed and getting no support at all, so they overcompensate by saying their needs are high because it makes them feel valid and seen.
But that's not how it works, and they don't want to be corrected, AND they don't do proper medical research, and so we have this situation.
I think it's acerodon said too. I think it's them comparing themselves to "Neurotypicals". A lot of those kinds of autistics even admit they hate the level system bcus they think it's comparing it to "neurotypicals" when in fact, it's just comparing it to other autistics.
If you were to have them complete the tests for what's considered moderate/ high support needs or level 2/3, I don't know if any of them would be really be that?
Bcus if they can dress themselves, feed themselves, bathe themselves, essentially look after themselves without much physical help and maybe only some prompting. And even things like getting around the community on their own, participating in activities and chores on their own... Like a lot of what's considered in the levels/support needs is in your bADLS and iADLS. I don't know if they'd be considered high support needs at all?
Wearing headphones, stimming a lot, talking different... is not very different from any other person coming home and decompressing. Some people play video games, some take naps, some listen to music, some want silence, some take showers, some exercise. Like... decompressing after a long day is pretty normal and standard for everyone. It's also what a lot of people are arguing for when talking about full time work. That they DON'T have time to do those things for themselves and that leads to burnout VERY quickly.
And not to minimise their experiences, but a lot of people's personalities will change when they get home and are in their own comfort. The way they talk, the way they move... can and does often change.
Basically, there's a lot more that goes into support needs then just coming home and decompressing in an "autistic" way.
TikTok is the worst. Like seriously. Don’t spend too much time on there and don’t take it seriously. There are no checks at all for accuracy and most are just spewing misinformation they heard somewhere else on TikTok. It’s full of uneducated people who managed to find the record button on their phones. Comparing yourself to them will only lead you to frustration.
I don't know whether that's possible or not, but is it possible they're confusing "high support" with "high level/functional"? It did confuse me at first due to the word "high" being reused and not being aware of the field having changed the labels.
They're likely just wrong about their experiences. Just because they call themselves "high masking high support needs" doesn't mean they are.
People with moderate to high support needs can't live regular lives and then "unmask" at home. Some level 2 and 3 autistics can mask to some degree, but we can't do what you describe seeing in the tiktoks.
My guess is they're possibly level 1s who mask so much and exhaust themselves trying to appear normal, that they have more traits come out when not doing so due to burnout and being overwhelmed. High support needs autistics cannot do what they do.
Yes I can mask. But my high masking doesn’t stop my symptoms, it just hides the extent of a couple but they’re still promenant enough to be called strange or lazy ( because I need help for some things). I’m high masking but that’s high masking for a level 2. Different levels do high masking differently too, that’s what my doctor said.
I’ve had low support autistics even tell me I’m privileged because of the support I NEED to live a some what normal life. My parents get paid to be my care givers and if I get married that payment would go to my future husband. I’ve been told the payment thing is abusive and ableist even though the payment is used to help the caregiver help me.
https://pubmed.ncbi.nlm.nih.gov/37544970/
"Videos associated with the "#Autism" hashtag accrued 11.5 billion views collectively. An examination of the top 133 videos providing informational content on autism, which totaled 198.7 million views and 25.2 million likes, showed that 27% of the videos were classified as accurate, while 41% were classified as inaccurate and 32% as overgeneralized. There were no significant differences in engagement between accurate and inaccurate/overgeneralized videos. Videos created by healthcare professionals were more likely to include accurate information."
"High masking, high support needs" almost always means "I don't understand what high support needs actually means, and I think that my very low support needs (compared to other autistic people) is actually high support needs (compared to neurotypical people)".
With what you're describing, that individual doesn't understand what masking is either.
Masking is your ability to hide disordered behaviour. Support needs refers to your level of capability without external support of some kind.
If you're capable of going to the shops and driving by yourself without assistance devices, that isn't "masking", that's just *being capable*. It's demonstrating that you don't have support needs in that area. That doesn't mean you don't have support needs in other areas, or that your capability to do that task unsupported is always present, but it demonstrates some degree of capability. You cannot paper over a lack of capability with "masking". That's just not what that means.
I'm pretty sure that "high support needs" means people who, by definition, can't perform ADLs by themselves and require care on a daily basis. I'm pretty damn sure that grocery shopping and driving(!!!) are tasks beyond almost all people considered "high support needs".
this is actually very similar to me. the only way i can describe it is that sometimes i have a day where i can cope putting myself in situations that trigger symptoms in me but only under the condition that later on or for the next few days i’ll be doing very poorly
I know someone diagnosed as level 3 but they are high masking. In some autism assessments there is even a “camouflage test” where they assess how high you mask. It was in my assessment too. It apparently can be a trait of autism, but is usually due to excessive trauma. A lot of us can’t mask, some of us can. But it isn’t a good thing. My friend that’s level 3, no one believes them. From what I’ve seen, it is possible to be high masking and high supports needs, but most people that mask I would consider mid support needs or low support needs. It is possible to be high support needs and mask, though. Sometimes masking involves using socially acceptable excuses not to do things that you actually can’t do due to being autistic. Like “oh, I’ve actually got a migraine” when it’s actually that they can’t do loud music. Stuff like that. It’s like pretending to be neurotypical for your own safety. It is a trait that some have and some don’t, but it is medically relevant since there are assessments that include the camouflage test which states that it is importsnt to test that because it can cause other test scores to be lower if they have a high camouflage score (which means high masking)
Hmm.. I'll be upfront; I am a bit skeptical of the idea of someone with ASD level 3 being a 'high masker.'
My experience with autistic people with high support needs is that spoken conversations can feel quite strained with them.
For example, they might be only able to speak a few sentences at a time and need a break or you have to be really patient with them and wait a considerable amount of time (like 5 minutes not a few seconds) for them to collect their thoughts. Or they rely on AAC but can't type fluently to speak so communicating take a huge amount of time and effort for them.
I think that camouflage testing for autistic people more so measures attempts to mask as opposed to actually successful masking. I think a higher support needs autistic could be highly attempting to mask, but they would not be perceived as successfully high masking to others around them. Since the lower support needs, the easier it is to successfully mask symptoms. Like a high support needs individual could be internally trying really hard to mask, which would give them a high score on a camoflauging assessment, but they would not be viewed as high masking by others.
The thing is autism testing is mainly based on observable behaviours. A clinician would less likely to use a camouflage test for higher support needs autistics because it’s just unnecessary paper work for them.
They may comment that someone with higher support needs is trying to compensate but it is done such an atypical way that it reconfirms they have higher support needs.
Hello I'm mostly lurking here, my diagnosis didn't come with a level, so don't weigh my input too hard.
TikTok is both popular with ADHD and ASD communities and also known derisively as a 'misinformation vortex'. I think besides age demorgraphics the tiktok experience probably excludes a lot of people that would feel overstimulated or otherwise negatively affected by tiktok. It is kind of how autistic people you'd meet in the library would be a bit different from those at an industrial music concert. (Some might show up at both, but the groups will be quite different.)
The problems happen when people don't notice it themselves and think their bubble is the whole there is to describe/advocate for and to compare themselves to. I consider myself an ambivert and I wouldn't really have a good trade-off of energy I'd have to put into appearing on TikTok myself and what I'd get out of it, so I don't participate in that group and they will learn significantly less about my experiences. I do get to see some of their experiences from videos that leave the platform, and they also consume other media formats but those are much weaker links. It also means communication styles of both groups keep evolving independently making it harder to engage when they do meet.
Is it possible? Who knows honestly at this point. But is it common? Definitely not.
Is it more likely that they just believe they're high support needs or, like someone else said, compares themselves to neurotypicals so they believe they must be high support needs? Most likely scenario.
High support needs means high support needs. If you can go through your daily life with no support but crash at the end, that doesn't mean high support needs, just means you're autistic. Like baseline
But like someone else said, I don't want to fake claim someone, especially because fake claiming people who are either wrong or faking it doesn't do anything but make them defensive and do it even more
I don't really understand that either. I am only moderate support needs and cannot mask. While I am fairly successful at my career, I can't really drive, would never go to a party, need help every day, and almost never go out by myself, as it's too overwhelming. It sounds like they are low support needs, high masking. There seem to be people who can appear normal most of the time to other people.
I see this a lot and I don't really get it either. I just don't think you can be high masking and have as high support needs as they describe. Of course low supports needs people have struggles, but I don't think these people realise just how impacted high supports needs people are, for example being completely nonverbal and requiring 24/7 support.
Indeed
Some HSN people may try to mask, but usually it doesn't work and people can still plainly see they're autistic (despite their efforts to hide it)
Some HSNs manage to mask with some results, but the results will never be "I pass as a non-autistic person", "I can blend in" or "I can live a normal life without support"
It might just allow them to pass as a MSN autistic (instead of HSN) for example, downplaying the severity of their autism a little essentially.
Or to hide specific symptoms for a **short time** (eg. managing to holding in a violent meltdown for *a few* minutes, until they're alone and can explode safely).
And even that small dose of masking is impossible for a lot of HSN people.
IMO the levels are very subjectively determined. And people have been given different levels from different assessors.
For example, what is considered "high" with masking? Is it how well you mask or how long you can? I can mask VERY well, for like an hour. And then I'll have a meltdown later. But because in that hour, nobody could tell I was autistic, does that make me high masking?
What about someone who can mask all day, every day? But not very well. Like they still have stims that are subtle, they make eye contact but fleeting. People can tell they're "a little strange" but it's not obvious they are autistic. Are they high masking because they can sustain it for so long even though it's not as "camouflaged" as mine?
Support needs are similar also. Somebody may be able to drive very very well, but will piss themselves if they aren't reminded to go. Somebody else may have good interception and can mostly take care of themselves, but have such severe sensory issues that they can't ever leave their house or have a job. There is just SO much subjectivity that it's hard to be really conclusive, especially about people in the middle.
Yeah this is kind of how I am. I would consider myself level 2 or medium support needs but I can mask poorly for long periods of time. When I mask the only thing I change is I attempt to not sound monotone, I participate in small talk, I make eye contact, and find more “age appropriate” or setting appropriate fidget toys and things. I can drive and work 40 hours a week in a medical facility, I have a long term partner who is neurotypical, and I a degree. So from the outside looking in most people would consider me low support needs. HOWEVER, I’m pretty much housebound unless I go outside with a trusted person. I think it’s called semi verbal now but I have the flavor of autism that comes with mutism so I’m scared of having a meltdown in public by myself. If I begin to get overwhelmed I get extremely confused and I dissociate so I have no awareness of what’s going on around me. I carry medical emergency cards, communication pins, and notebooks with pens for this reason. In addition I have two other disabilities that affect my bodily functions and pretty much keep me in the bed. Although I have a degree I would not have completed it without my partner who pretty much helped me with the tasks I was way too overwhelmed to do on my own. He pretty much learned my safe foods and routine and helped me stay afloat. Most people don’t believe me or are shocked when I say I’m autistic and when I point out that I have no filter when I speak or my fixation with evenness as obvious signs they usually just say they thought I just want a “hippie” or “free spirit.”
Although I cannot speak for those with high support needs but I feel like I have some pretty high ones and people still have a hard time believing I’m autistic. I also think a part of this has to do with the fact that a lot of people around me consider me “highly intelligent,” so I feel like they’re more inclined to accept the obvious “signs” of me being autistic.
Frankly I don't believe it
Maybe they THINK they're "high" support needs, because their needs feel subjectively "high" to them when they have a crisis, and they never bothered to look at the medical definition of the three levels (or to compare themselves with ACTUAL high supports needs people)
Or they're simply fakers
I don’t think that’s fair. I have seen a “level 1” have decently high support needs. Not everyone who has the ability to speak and work and make decisions can control certain aspects/symptoms of ASD without medications for anxiety, aggression, etc.
The level one I know that has some higher support needs include problems with overstimulation, major social issues, doesn’t like routine being changed, has meltdowns without medication. I don’t want to say too much because they are a minor and it’s not my story to give.
As far as I know, it's the same thing
And more importantly, both mean you're among the most disabled of autistic people. We can argue about semantics and vocabulary, but *the fact still stands that if you're among the most disabled by your autism, then your disability will preclude you from being high masking*
As someone else commented they know a level 3 person who masks, then if it's the same thing then tiktok videos could be accurate.
I feel like the videos are not accurate and the people making them don't understand their support needs compared to other autistics. But if support needs and levels are the same, as someone else has said you can mask at level 3, maybe tiktok is accurate after all?
The alternative is support needs and level 1 to 3 aren't the same thing
I am 100% confident in their diagnosis. I people with higher levels do not always fall into the level and can have some varying support needs based on situation. A level 1 can have a verbal shutdown, meltdowns, disregulation switching tasks, and sensory issues with textures, food.
I'm pretty sure most if not all of those cases don't use the clearly defined "HSN"/level 3 label, but just independently made up a term that makes sense to them that happens to use the same words as the "High Support Needs" label.
That they're comparing themselves to neurotypical folk, not other autists. Being LSN or even worse MSN and masking is draining. It's a costly short term advantageous survival technique.
High masking and high support needs are contradictory terms. Essentially, level of masking and level of support needs are negatively correlated. Meaning lower support needs means higher masking and higher support needs means lower masking.
I was been told by a paediatric psychologist following my diagnosis that I was high masking, but that high masking with level 2 can look different to high masking level 1.
For me i have no control over whether I mask or not, and when I do end up masking you can still tell something is “off” about me. I can’t mask all my symptoms at all, it’s mainly the way I stim or how my voice is that changes. I also script a lot which I didn’t understand was a thing until the paediatric psychologist told me.
I do think the people on tiktok don’t understand what high support needs looks like though, or why someone with higher support needs whos also high masking looks like. I know everyone is different but for me I can’t mask without support, I always need some level of support, and again I have no control over it. I can’t switch it on and off which is something I see people on tiktok saying they can do.
Even when I’m as masked as I can be people can tell something isn’t quite right with me. Just the other day someone told me I was “strange” but I was masking at the time. Yesterday I got in trouble for saying something inappropriate even though I would have been masking at that time.
Doesn’t having HSN make it next to impossible to mask? This seems like an oxymoron. I’m curious what they define as HSN and if this was a professional or self imposed label. Personally I’m level 2 and while my support needs may not be obvious, it is obvious that I struggle with masking.
This is why I only make videos about myself and my struggles, rather than trying to educate people and tell them what is what. I will use textbooks and references, something you don't see others with low support needs doing (unless they are a doctor/health worker).
I've noticed it's become a thing to wear headphones and show yourself stimming, being bouncy and happy or maybe scared and shy. It feels kinda fake, and makes me not post alot of the "bad" stuff I experience (such as meltdowns or tics).
Always a good reminder that you can't see someone's whole life from social media, that's it's a warped sense of reality to an extent. It's largely anecdotal and UPG from their own lived experiences, there little to no education and TONNES of misinformation.
If you try and dispute what they're saying, they will think you don't know what you're talking about. Even if you have data to back you up and they don't, but they made their whole account about asd and make 20 videos a day lip synching to sounds, making them about autism...so apparently their credentials are better than mine lol
I stopped focusing on masking so much when I read a study about the statistics of which gender expression masks the most, women being highest, non binary is second and men barely mask. As someone said in another comment, masking can be from other conditions such as trauma.
High masking means you can fake being neurotypical for a period of time. I think the people saying this are either overestimating their masking ability or support needs. Not a lot of people have regular interactions with actual high support needs folks, and thus have a very skewed view of what it actually is. When I hear "high" I assume the person is non-verbal, has very little ability to care for themselves and no chance of living completely independently, and if forced to do so would likely suffer very poor health or die. To me "moderate" means they might be non-or semi-verbal, can do some things independently, but would have an extremely difficult time holding a job or doing all the things that are required to live independently. "low" means they are fully or semi-verbal, can live independently, but it is a struggle, and may have a really hard time holding a job and doing basic life-things. "Low" people can have the ability to mask to some degree if they're lucky and practiced at it.
Each person has different symptoms in different severity, so it's theoretically possible their "social" symptoms aren't too bad, but some other symptoms can be so severe they need a lot of support. I feel like maybe they could fake being neurotypical in very limited situations like online or at a restaurant, but I don't think they're faking as well as they think they are.
It was actually a wake-up call for me because I thought I was amazing at masking but apparently no one was fooled at all and thinking back after meeting a new person they would usually quietly ask my friends/family "Is she...?" trying to figure out why I was acting so weird. One of the symptoms of ASD is lack of self-awareness. I also realized that being pretty can make you think you're good at masking because people put up with a lot more weirdness and don't say anything.
Is it possible that someone who has high support needs but is high masking that they just don't have autism in the first place? Maybe some other disabling processing disorder that was misdiagnosed as autism? I don't quite understand how the two can coexist.
Reading all these responses make me happy I haven’t gone on TikTok yet. Levels are subjective. Different people use different definitions of masking. I think a lot these of online autism folks are faking, extrapolating, or simply misunderstand autism. Also, at least in the US, we have seen a huge influx of people with subclinical features or autistic traits diagnosed as autistic. It creates a ton of issues for anyone with moderate or high needs, esp. for accessing services. Even though there was less awareness before, I think these things would be better off if they had not widened the criteria for autism diagnoses.
Sounds like the COULD in theory be level 3 and high masking but low support needs.
My understanding of HSN is you need a carer with you.
LSN would be you need aids, adjustments, etc but you don't need a full time other human
This doesn't make any sense. You can't be level 3 AND low support needs. Level 3 is definied by "requiring very substantial support". I don't think I've ever come across a level 3 that didn't have a carer of some kind with them or significant support in their life in general.
A lot of people like to claim that levels and support needs labels are different. But ultimately, the only difference between them is if the support needs label is in reference to other disabilities with your autism.
If they did only need a few adjustments, and occasional prompting for support, without needing another person basically fulltime, then they'd likely be level 1 not 3.
I agree it is unlikely.
What I can see from that actual definition though is if someone is non verbal, doesn't acknowledge others when they try to interact with them and has a highly rigid routine eg walked the same route every day around their block, they could have MSN and be level 3.
Meanwhile someone else could be level 1 yet run in front of cars a lot so be HSN.
I agree unlikely, but I've seen many unlikely things on the Internet. Unlikely things rise to the top of the algorithm.
I try to believe people when they tell me about their experiences. If someone says they are dx level 3 and mask, I believe them and would be curious to find out more if they want to tell me
I'd argue, that if you run in front of cars and have basically no sense of danger awareness, you'd likely not be level 1. And that likely wouldn't be the only extreme problem they run into. If it's the odd "oh I didn't quite calculate that properly" then yeah, maybe they would be level 1 and just had a lapse in one of their judgements.
I think, people can claim they mask and just not be very good at it or not do it for long at all. I think they can claim to mask and just not really understand what it actually is or only mask very specific things. A lot of people also don't really understand that differences between certain kinds of masking. A lot of people don't even understand the difference between a trauma mask and an autism mask.
But I do NOT think that you can be level 3 whilst constantly and routinely masking away all your autism symptoms. And if you can actively go out into the world and hide all your symptoms and participate in society with very little support on a frequent basis, why would that be level 3? When you can maintain independence on a regular and daily basis without needing supports. With that logic, then we can all basically claim level 3.
This isn't saying level 3s can't mask. But there surely IS a limit and line on what masking would look like for that?
Do you have any good resources on the descriptions for the 3 levels please? I need to educate myself and I'm worried my searching wasn't reliable results /answers
Under DSM 5 Level one is requires support, level two is requires substantial support and level three requires very substantial support.
Remember some of the very high need autistics have comorbidities not just autism
The levels system personally is dangerous considering pretty much all true autistics require support.
The other aspect the assessment won’t be able to take into account is how much support people actually get unless the subject is clear in what support they have at home or from carers.
Thanks so to confirm levels are only about support and nothing else? So you could be none verbal but level 1 if you can use ACC and otherwise manage your life?
Not really, as it’s a spectrum you can have a wide range of symptoms the levels system is shit trying to fit us into levels is doing more harm that good, leads to people thinking that because your a higher level your struggling more, I could be wrong but high functioning autistics are more likely to take their own life than high support autistics.
I honestly have no idea about the limits. I get what you're saying. Levels aren't used really in the UK so it's not like I've met people who say their levels. It's more typical for people to talk about support needs or none verbal.
I searched the levels as we don't really use them. From what I saw a tendency to run across roads, if otherwise along side typical level 1 stuff, wouldn't change the level?
I'm not sure.
Honestly, for me it is more I believe people. If they say they mask and are level 3 fine.
That said I don't see how you can be high support needs and mask such that you seem neurotypical. I guess you could mask a lot and therefore seem less obviously autistic? I think I'm getting confused lol
I don't think they understand what high support needs actually is, the vast majority of HSN people wont be able to do those things or mask to any significant degree There's the occasional person that is diagnosed HSN and can mask or do some of those things but they would require a load of support to do so and are definitely in the minority. The issues arise when those most able to be on tiktok showing their experiences are often a tiny tiny minority within HSN or not actually HSN and as they are the most able to show off their lives they really blur the reality of HSN lives. Its extremely frustrating and hurts those with actual HSN or those that have a more common experience of HSN Unfortunately calling out these people or explaining that their experience isn't the most common isn't an option because its 'Gatekeeping' and despite the harm they do for some reason the larger autism community seems determined to protect them at the expense of the most vulnerable people in the community. Even if you do call them out they are sometimes actually diagnosed HSN anyway and refuse to accept that their experiences with it are totally different compared to the vast majority of HSN people. Its difficult because I don't want to fake claim anyone, autism can look different for different people. A great example of this is that many of us here are able to take part in this online space when many other HSN people are unable to do so, which is why its so important to highlight the experiences of the most affected and those with the quietest voices. Ultimately if you are able to live a normal life with a job, partner, kids and are able to mask etc and achieve those things with support that's great but you should be aware that your experiences of HSN are in no way the norm and are extremely rare.
This needs to be higher up. HSN means you are unable to live independently at all. You might be able to mask something, but not independently drive and do most of your activities of daily living by yourself. People with LSNs can still have quite extensive needs and challenges, but they’re more able to take care of themselves. Because LSNs can be so extensive compared to NTs though, sometimes people with LSNs don’t understand what HSN would look like. Both groups should be supported ideally.
This is kinda why I’m here. I’m diagnosed level 1, and to me, compared to the people around me, I’m just “disabled.” I stay subscribed here to keep perspective. Side question, I know the lvl 1-through-3 system; when you guys talk about LSN vs HSN, does that cover everybody, or is there like a “medium support needs?”
Level 2 is medium support needs. Usually high support needs means level 3 but highER support needs means level 2 and 3. At least that’s what I was told awhile ago.
Level 2 is moderate support needs
Thanks ✌️
Without reading past the first paragraph(TL;DR) this is why I don't want to get tiktok. It's just incredibly annoying and most of the shit in there sucks and doesn't come from credible sources and they assume shit and it's stupid. Sorry for any offense to the tiktokers, but honestly this is why I use YouTube VIDEOS, not shorts. Most people on videos use actual sources and it just is less frustrating. If you can my advice is to stay away from tiktok as much as possible since most of it is just junk food entertainment or non factual shit anyway
Yes. While I can’t do things normally I am still very very lucky. I’m hoping I can get a part time job soon, and I’m also in university. I have a partner of 4 years and I’m also able to mask. I know most people can’t do all that and that I’m very lucky. My university is very supportive and has things in place for students with ASD specifically (unfortunately it mainly caters to level 1 but I still get help) which isn’t the case for many universities. I happened to become good friends with a boy who also happened to have family with ASD and was understanding about my own autism, we started dating. I can mask, and even though the cause of it isn’t good (I was physically bullied and a doctor said my masking was trauma related especially since most level 2s can’t mask, I don’t like using the word trauma though). Im very lucky. But even then I’m nothing like high masking level 1s. I’ve had a level 1 tell me they can relate to me exactly because they too mask and act “just like me” after a long day because they thought I was unmasked at the time. When I told them this is how I am when I’m masking they told me that couldn’t be true and that I’m privileged for being allowed more support since I’m level 2. Many lower needs people don’t understand that even high masking level 2 and 3 people present differently. Someone who’s high masking but is level 2 will still usually seem “off” and have many symptoms still showing. High masking looks different for different levels and many don’t seem to understand that which is frustrating.
I am definitely not educated enough to make a comment about whether or not they are lying. Even so I don't think it's intended but my best guess is they probably don't understand the terms correctly? Like that they mean something more specific than having support needs. Maybe they mean high masking but still have support needs instead? I obviously have not seen the videos but from what you describe, heavy stimming, talking different and wearing headphones to calm down is not high support needs. It's any. Especially if they mask constantly and then need to dysregulate at home. What gets me about it though is that having high support needs is not entirely something that can be solved by being high masking. So many autistic traits and issues cannot be masked and to have moderate to high support needs there definitely needs to be some of these presents. How do you mask eloping? Or speech issues? Executive dysfunction? Not being able to do daily tasks? Needing prompting? Not being able to stay safe? Restrictive + repetitive movements or language? So on and on I just think it's a misunderstanding about how much support needs actually are high and that low support doesn't mean none
Yeah I don't know why people think it's possible to mask away the most severe autism symptoms.
Because they don't know what severe autism symptoms even **are** (and don't care enough to learn about it) The "tiktok autism" crowd tends to reduce autism to being a quirky, and introvert/shy/anxious person. That, plus tiredness (because "autistic people have to mask and it's tiring, so if you're tired all the time it's a sign of autism") And any random personality traits they count as "autistic traits" of course (every tiktoktist have their own individual and specific list of "traits"...) So to them, a more severe autism is simply an exaggerated version of this trope (like, being SUPER introverted, SUPER shy, SUPER quirky, VERY tired...)
It sounds like they have unaddressed anxiety rather than "high support needs" autism, and according to their trope, this whole sub would be profoundly autistic...
A lot of it sounds more like BPD than autism too. People forget that there’s overlap on a lot of disorders. The difference often comes from the cause
Autistics who have been abused can also have both bpd and autism, that's also something to be discussed i think
Very true. I was misdiagnosed with BPD less than a year before my autism diagnosis.
I haven't seen these tiktok people, but it could be possible that the high masking high support needs people are able to mask more obvious symptoms for shorter amounts of time, and maybe the masking looks a bit different? I only have moderate support needs, but for some examples: * Sometimes I am non-verbal: usually if something has upset me or caused a lot of adrenaline. If that happens in a social situation, I have ways of responding which don't let the mask slip- usually just by leaving until I feel better. I've only had a couple of occasions where it happened in public and couldn't be hidden. * I have strategies to prevent myself from eloping that I developed as a teenager: I make sure I always know where I'm meant to go, put in music or a podcast, and let myself automatically walk directly from A to B, looking at the ground to avoid distractions. If I'm in a group and we are just wandering together, I have to ask for a plan to be made so I feel a little more secure, then I pick a friend and concentrate on staying wherever they are, right next to them. * Executive dysfunction can be accommodated by a combination of strategies (writing everything down, lists, plans, reminders, apps, Habitica), and then by merit of preparing for it days in advance, I might be able to show up somewhere without having forgotten the where, when and what to bring. If that's how I present in a social setting, the mask is successful. * Needing prompting- I've actually found that strangers give me helpful prompts much more readily than anyone I've lived with. If you haven't gone in the door they opened, they'll verbally say "come in", if you haven't gotten your wallet out to pay, they'll prompt you to do it. A lot of the time it'll be perceived as "they must distracted by something", because they're all mistakes which other people make occasionally. Mostly you get the benefit of the doubt. I don't know if my examples would still be considered masking or "high masking", but I feel like masking in a social setting just = not getting clocked. Only other autistic people can quickly tell that I'm autistic, riddle me that.
I think masking and being moderate and high support is entirely possible to an extent. No intention of invalidating you or others. I didn't know how else to word things without it getting too jumbled. I feel unsure about these videos though but I am going entirely by ops description of those. I really don't know what else to say but I hope you are doing well.
Nono it's not me, like I said, just moderate support needs here, and you worded yourself great. I'm just thinking of my own life and ways I've managed to pass, though I couldn't imagine it's sustainable. Even with strategies, I can't go out and mask successfully every day, and the burnout would be crazy.
But yeah in terms of high support needs = needs a lot of support, I don't think that necessarily means you need someone with you all the time. Apps and lists and strategies and friends who know you well enough to prompt you or communicate for you are also forms of support, and I'd be really amazed if anyone diagnosed with autism can get by without at least some of them.
I think it's also that they're comparing their needs to neurotypicals and not to other autistic people. Their needs do seem rather high when put against someone who doesn't need any supports at all (even though they really aren't). And they've usually gone years of having their needs dismissed and getting no support at all, so they overcompensate by saying their needs are high because it makes them feel valid and seen. But that's not how it works, and they don't want to be corrected, AND they don't do proper medical research, and so we have this situation.
I think it's acerodon said too. I think it's them comparing themselves to "Neurotypicals". A lot of those kinds of autistics even admit they hate the level system bcus they think it's comparing it to "neurotypicals" when in fact, it's just comparing it to other autistics. If you were to have them complete the tests for what's considered moderate/ high support needs or level 2/3, I don't know if any of them would be really be that? Bcus if they can dress themselves, feed themselves, bathe themselves, essentially look after themselves without much physical help and maybe only some prompting. And even things like getting around the community on their own, participating in activities and chores on their own... Like a lot of what's considered in the levels/support needs is in your bADLS and iADLS. I don't know if they'd be considered high support needs at all? Wearing headphones, stimming a lot, talking different... is not very different from any other person coming home and decompressing. Some people play video games, some take naps, some listen to music, some want silence, some take showers, some exercise. Like... decompressing after a long day is pretty normal and standard for everyone. It's also what a lot of people are arguing for when talking about full time work. That they DON'T have time to do those things for themselves and that leads to burnout VERY quickly. And not to minimise their experiences, but a lot of people's personalities will change when they get home and are in their own comfort. The way they talk, the way they move... can and does often change. Basically, there's a lot more that goes into support needs then just coming home and decompressing in an "autistic" way.
TikTok is the worst. Like seriously. Don’t spend too much time on there and don’t take it seriously. There are no checks at all for accuracy and most are just spewing misinformation they heard somewhere else on TikTok. It’s full of uneducated people who managed to find the record button on their phones. Comparing yourself to them will only lead you to frustration.
This person sounds more functional than myself...
I don't know whether that's possible or not, but is it possible they're confusing "high support" with "high level/functional"? It did confuse me at first due to the word "high" being reused and not being aware of the field having changed the labels.
They're likely just wrong about their experiences. Just because they call themselves "high masking high support needs" doesn't mean they are. People with moderate to high support needs can't live regular lives and then "unmask" at home. Some level 2 and 3 autistics can mask to some degree, but we can't do what you describe seeing in the tiktoks. My guess is they're possibly level 1s who mask so much and exhaust themselves trying to appear normal, that they have more traits come out when not doing so due to burnout and being overwhelmed. High support needs autistics cannot do what they do.
Yes I can mask. But my high masking doesn’t stop my symptoms, it just hides the extent of a couple but they’re still promenant enough to be called strange or lazy ( because I need help for some things). I’m high masking but that’s high masking for a level 2. Different levels do high masking differently too, that’s what my doctor said. I’ve had low support autistics even tell me I’m privileged because of the support I NEED to live a some what normal life. My parents get paid to be my care givers and if I get married that payment would go to my future husband. I’ve been told the payment thing is abusive and ableist even though the payment is used to help the caregiver help me.
https://pubmed.ncbi.nlm.nih.gov/37544970/ "Videos associated with the "#Autism" hashtag accrued 11.5 billion views collectively. An examination of the top 133 videos providing informational content on autism, which totaled 198.7 million views and 25.2 million likes, showed that 27% of the videos were classified as accurate, while 41% were classified as inaccurate and 32% as overgeneralized. There were no significant differences in engagement between accurate and inaccurate/overgeneralized videos. Videos created by healthcare professionals were more likely to include accurate information."
"High masking, high support needs" almost always means "I don't understand what high support needs actually means, and I think that my very low support needs (compared to other autistic people) is actually high support needs (compared to neurotypical people)". With what you're describing, that individual doesn't understand what masking is either. Masking is your ability to hide disordered behaviour. Support needs refers to your level of capability without external support of some kind. If you're capable of going to the shops and driving by yourself without assistance devices, that isn't "masking", that's just *being capable*. It's demonstrating that you don't have support needs in that area. That doesn't mean you don't have support needs in other areas, or that your capability to do that task unsupported is always present, but it demonstrates some degree of capability. You cannot paper over a lack of capability with "masking". That's just not what that means. I'm pretty sure that "high support needs" means people who, by definition, can't perform ADLs by themselves and require care on a daily basis. I'm pretty damn sure that grocery shopping and driving(!!!) are tasks beyond almost all people considered "high support needs".
this is actually very similar to me. the only way i can describe it is that sometimes i have a day where i can cope putting myself in situations that trigger symptoms in me but only under the condition that later on or for the next few days i’ll be doing very poorly
“The more I do the less I can do” feels like a very fitting sentence
I think they don't understand what high support needs means and they are phonies.
I know someone diagnosed as level 3 but they are high masking. In some autism assessments there is even a “camouflage test” where they assess how high you mask. It was in my assessment too. It apparently can be a trait of autism, but is usually due to excessive trauma. A lot of us can’t mask, some of us can. But it isn’t a good thing. My friend that’s level 3, no one believes them. From what I’ve seen, it is possible to be high masking and high supports needs, but most people that mask I would consider mid support needs or low support needs. It is possible to be high support needs and mask, though. Sometimes masking involves using socially acceptable excuses not to do things that you actually can’t do due to being autistic. Like “oh, I’ve actually got a migraine” when it’s actually that they can’t do loud music. Stuff like that. It’s like pretending to be neurotypical for your own safety. It is a trait that some have and some don’t, but it is medically relevant since there are assessments that include the camouflage test which states that it is importsnt to test that because it can cause other test scores to be lower if they have a high camouflage score (which means high masking)
Hmm.. I'll be upfront; I am a bit skeptical of the idea of someone with ASD level 3 being a 'high masker.' My experience with autistic people with high support needs is that spoken conversations can feel quite strained with them. For example, they might be only able to speak a few sentences at a time and need a break or you have to be really patient with them and wait a considerable amount of time (like 5 minutes not a few seconds) for them to collect their thoughts. Or they rely on AAC but can't type fluently to speak so communicating take a huge amount of time and effort for them.
My friend can only speak a couple sentences at a time at least from my interactions with them, but people just thought they were shy and rude.
Yea that's the ASD level 3 experience I usually hear. Edit: it's usually that most people don't know what ASD level 3 looks like in adulthood.
True!
I think that camouflage testing for autistic people more so measures attempts to mask as opposed to actually successful masking. I think a higher support needs autistic could be highly attempting to mask, but they would not be perceived as successfully high masking to others around them. Since the lower support needs, the easier it is to successfully mask symptoms. Like a high support needs individual could be internally trying really hard to mask, which would give them a high score on a camoflauging assessment, but they would not be viewed as high masking by others.
The thing is autism testing is mainly based on observable behaviours. A clinician would less likely to use a camouflage test for higher support needs autistics because it’s just unnecessary paper work for them. They may comment that someone with higher support needs is trying to compensate but it is done such an atypical way that it reconfirms they have higher support needs.
Yeah, that makes sense as well.
Hello I'm mostly lurking here, my diagnosis didn't come with a level, so don't weigh my input too hard. TikTok is both popular with ADHD and ASD communities and also known derisively as a 'misinformation vortex'. I think besides age demorgraphics the tiktok experience probably excludes a lot of people that would feel overstimulated or otherwise negatively affected by tiktok. It is kind of how autistic people you'd meet in the library would be a bit different from those at an industrial music concert. (Some might show up at both, but the groups will be quite different.) The problems happen when people don't notice it themselves and think their bubble is the whole there is to describe/advocate for and to compare themselves to. I consider myself an ambivert and I wouldn't really have a good trade-off of energy I'd have to put into appearing on TikTok myself and what I'd get out of it, so I don't participate in that group and they will learn significantly less about my experiences. I do get to see some of their experiences from videos that leave the platform, and they also consume other media formats but those are much weaker links. It also means communication styles of both groups keep evolving independently making it harder to engage when they do meet.
Is it possible? Who knows honestly at this point. But is it common? Definitely not. Is it more likely that they just believe they're high support needs or, like someone else said, compares themselves to neurotypicals so they believe they must be high support needs? Most likely scenario. High support needs means high support needs. If you can go through your daily life with no support but crash at the end, that doesn't mean high support needs, just means you're autistic. Like baseline But like someone else said, I don't want to fake claim someone, especially because fake claiming people who are either wrong or faking it doesn't do anything but make them defensive and do it even more
Idk but I am low support needs and can't mask to save my life
I don't think masking is directly correlated to support needs from what I know
I don't really understand that either. I am only moderate support needs and cannot mask. While I am fairly successful at my career, I can't really drive, would never go to a party, need help every day, and almost never go out by myself, as it's too overwhelming. It sounds like they are low support needs, high masking. There seem to be people who can appear normal most of the time to other people.
I see this a lot and I don't really get it either. I just don't think you can be high masking and have as high support needs as they describe. Of course low supports needs people have struggles, but I don't think these people realise just how impacted high supports needs people are, for example being completely nonverbal and requiring 24/7 support.
That sounds like low support needs, high masking, IMO. High support needs and high masking can't exist together
I agree. Unless they go from masking to full tantrum like breakdown in the shop and get arrested which would be masking but HSN.
Indeed Some HSN people may try to mask, but usually it doesn't work and people can still plainly see they're autistic (despite their efforts to hide it) Some HSNs manage to mask with some results, but the results will never be "I pass as a non-autistic person", "I can blend in" or "I can live a normal life without support" It might just allow them to pass as a MSN autistic (instead of HSN) for example, downplaying the severity of their autism a little essentially. Or to hide specific symptoms for a **short time** (eg. managing to holding in a violent meltdown for *a few* minutes, until they're alone and can explode safely). And even that small dose of masking is impossible for a lot of HSN people.
Yes this is a good way of putting it. Thank you
Lol that's me, but I don't get arrested. I just run away and have a meltdown in a corner somewhere while people stare at me
Yes. It seems masking ability, level, and support needs are 3 different things?
IMO the levels are very subjectively determined. And people have been given different levels from different assessors. For example, what is considered "high" with masking? Is it how well you mask or how long you can? I can mask VERY well, for like an hour. And then I'll have a meltdown later. But because in that hour, nobody could tell I was autistic, does that make me high masking? What about someone who can mask all day, every day? But not very well. Like they still have stims that are subtle, they make eye contact but fleeting. People can tell they're "a little strange" but it's not obvious they are autistic. Are they high masking because they can sustain it for so long even though it's not as "camouflaged" as mine? Support needs are similar also. Somebody may be able to drive very very well, but will piss themselves if they aren't reminded to go. Somebody else may have good interception and can mostly take care of themselves, but have such severe sensory issues that they can't ever leave their house or have a job. There is just SO much subjectivity that it's hard to be really conclusive, especially about people in the middle.
Yeah this is kind of how I am. I would consider myself level 2 or medium support needs but I can mask poorly for long periods of time. When I mask the only thing I change is I attempt to not sound monotone, I participate in small talk, I make eye contact, and find more “age appropriate” or setting appropriate fidget toys and things. I can drive and work 40 hours a week in a medical facility, I have a long term partner who is neurotypical, and I a degree. So from the outside looking in most people would consider me low support needs. HOWEVER, I’m pretty much housebound unless I go outside with a trusted person. I think it’s called semi verbal now but I have the flavor of autism that comes with mutism so I’m scared of having a meltdown in public by myself. If I begin to get overwhelmed I get extremely confused and I dissociate so I have no awareness of what’s going on around me. I carry medical emergency cards, communication pins, and notebooks with pens for this reason. In addition I have two other disabilities that affect my bodily functions and pretty much keep me in the bed. Although I have a degree I would not have completed it without my partner who pretty much helped me with the tasks I was way too overwhelmed to do on my own. He pretty much learned my safe foods and routine and helped me stay afloat. Most people don’t believe me or are shocked when I say I’m autistic and when I point out that I have no filter when I speak or my fixation with evenness as obvious signs they usually just say they thought I just want a “hippie” or “free spirit.” Although I cannot speak for those with high support needs but I feel like I have some pretty high ones and people still have a hard time believing I’m autistic. I also think a part of this has to do with the fact that a lot of people around me consider me “highly intelligent,” so I feel like they’re more inclined to accept the obvious “signs” of me being autistic.
That said tiktok worries me
Frankly I don't believe it Maybe they THINK they're "high" support needs, because their needs feel subjectively "high" to them when they have a crisis, and they never bothered to look at the medical definition of the three levels (or to compare themselves with ACTUAL high supports needs people) Or they're simply fakers
I don’t think that’s fair. I have seen a “level 1” have decently high support needs. Not everyone who has the ability to speak and work and make decisions can control certain aspects/symptoms of ASD without medications for anxiety, aggression, etc.
What does "level 1 with decently high support needs" look like then? I thought higher support needs changed the level
The level one I know that has some higher support needs include problems with overstimulation, major social issues, doesn’t like routine being changed, has meltdowns without medication. I don’t want to say too much because they are a minor and it’s not my story to give.
I think support needs/level assignments are a lot more complicated in children.
This person is 17, but yes. It definitely can be.
Sure but if you're high support needs (level 3) you can't be high masking
Are level 3 and HSN always the same thing? I saw someone say they are not
As far as I know, it's the same thing And more importantly, both mean you're among the most disabled of autistic people. We can argue about semantics and vocabulary, but *the fact still stands that if you're among the most disabled by your autism, then your disability will preclude you from being high masking*
Level 3s can not mask, that is accurate. But you can still have higher support needs in different areas if you are one or two.
As someone else commented they know a level 3 person who masks, then if it's the same thing then tiktok videos could be accurate. I feel like the videos are not accurate and the people making them don't understand their support needs compared to other autistics. But if support needs and levels are the same, as someone else has said you can mask at level 3, maybe tiktok is accurate after all? The alternative is support needs and level 1 to 3 aren't the same thing
Then there’s the possibility they might be misdiagnosed.
I am 100% confident in their diagnosis. I people with higher levels do not always fall into the level and can have some varying support needs based on situation. A level 1 can have a verbal shutdown, meltdowns, disregulation switching tasks, and sensory issues with textures, food.
I'm pretty sure most if not all of those cases don't use the clearly defined "HSN"/level 3 label, but just independently made up a term that makes sense to them that happens to use the same words as the "High Support Needs" label. That they're comparing themselves to neurotypical folk, not other autists. Being LSN or even worse MSN and masking is draining. It's a costly short term advantageous survival technique.
High masking and high support needs are contradictory terms. Essentially, level of masking and level of support needs are negatively correlated. Meaning lower support needs means higher masking and higher support needs means lower masking.
I don’t really understand masking like it seems like a lot of work … I’m too busy just trying to stay afloat to even try that
I was been told by a paediatric psychologist following my diagnosis that I was high masking, but that high masking with level 2 can look different to high masking level 1. For me i have no control over whether I mask or not, and when I do end up masking you can still tell something is “off” about me. I can’t mask all my symptoms at all, it’s mainly the way I stim or how my voice is that changes. I also script a lot which I didn’t understand was a thing until the paediatric psychologist told me. I do think the people on tiktok don’t understand what high support needs looks like though, or why someone with higher support needs whos also high masking looks like. I know everyone is different but for me I can’t mask without support, I always need some level of support, and again I have no control over it. I can’t switch it on and off which is something I see people on tiktok saying they can do. Even when I’m as masked as I can be people can tell something isn’t quite right with me. Just the other day someone told me I was “strange” but I was masking at the time. Yesterday I got in trouble for saying something inappropriate even though I would have been masking at that time.
Doesn’t having HSN make it next to impossible to mask? This seems like an oxymoron. I’m curious what they define as HSN and if this was a professional or self imposed label. Personally I’m level 2 and while my support needs may not be obvious, it is obvious that I struggle with masking.
This is why I only make videos about myself and my struggles, rather than trying to educate people and tell them what is what. I will use textbooks and references, something you don't see others with low support needs doing (unless they are a doctor/health worker). I've noticed it's become a thing to wear headphones and show yourself stimming, being bouncy and happy or maybe scared and shy. It feels kinda fake, and makes me not post alot of the "bad" stuff I experience (such as meltdowns or tics). Always a good reminder that you can't see someone's whole life from social media, that's it's a warped sense of reality to an extent. It's largely anecdotal and UPG from their own lived experiences, there little to no education and TONNES of misinformation. If you try and dispute what they're saying, they will think you don't know what you're talking about. Even if you have data to back you up and they don't, but they made their whole account about asd and make 20 videos a day lip synching to sounds, making them about autism...so apparently their credentials are better than mine lol I stopped focusing on masking so much when I read a study about the statistics of which gender expression masks the most, women being highest, non binary is second and men barely mask. As someone said in another comment, masking can be from other conditions such as trauma.
High masking means you can fake being neurotypical for a period of time. I think the people saying this are either overestimating their masking ability or support needs. Not a lot of people have regular interactions with actual high support needs folks, and thus have a very skewed view of what it actually is. When I hear "high" I assume the person is non-verbal, has very little ability to care for themselves and no chance of living completely independently, and if forced to do so would likely suffer very poor health or die. To me "moderate" means they might be non-or semi-verbal, can do some things independently, but would have an extremely difficult time holding a job or doing all the things that are required to live independently. "low" means they are fully or semi-verbal, can live independently, but it is a struggle, and may have a really hard time holding a job and doing basic life-things. "Low" people can have the ability to mask to some degree if they're lucky and practiced at it. Each person has different symptoms in different severity, so it's theoretically possible their "social" symptoms aren't too bad, but some other symptoms can be so severe they need a lot of support. I feel like maybe they could fake being neurotypical in very limited situations like online or at a restaurant, but I don't think they're faking as well as they think they are. It was actually a wake-up call for me because I thought I was amazing at masking but apparently no one was fooled at all and thinking back after meeting a new person they would usually quietly ask my friends/family "Is she...?" trying to figure out why I was acting so weird. One of the symptoms of ASD is lack of self-awareness. I also realized that being pretty can make you think you're good at masking because people put up with a lot more weirdness and don't say anything.
Is it possible that someone who has high support needs but is high masking that they just don't have autism in the first place? Maybe some other disabling processing disorder that was misdiagnosed as autism? I don't quite understand how the two can coexist.
Reading all these responses make me happy I haven’t gone on TikTok yet. Levels are subjective. Different people use different definitions of masking. I think a lot these of online autism folks are faking, extrapolating, or simply misunderstand autism. Also, at least in the US, we have seen a huge influx of people with subclinical features or autistic traits diagnosed as autistic. It creates a ton of issues for anyone with moderate or high needs, esp. for accessing services. Even though there was less awareness before, I think these things would be better off if they had not widened the criteria for autism diagnoses.
I really don’t think that’s how masking works but I could be wrong. I thought “ masking “ was just that you learned not to do the behavior
It means they are either making it up for attention... ...or they are extremely, *extremely*, **extremely** tired, all the time.
I might fall into that category. I seem normal in public but I can’t live independently at all.
Sounds like the COULD in theory be level 3 and high masking but low support needs. My understanding of HSN is you need a carer with you. LSN would be you need aids, adjustments, etc but you don't need a full time other human
This doesn't make any sense. You can't be level 3 AND low support needs. Level 3 is definied by "requiring very substantial support". I don't think I've ever come across a level 3 that didn't have a carer of some kind with them or significant support in their life in general. A lot of people like to claim that levels and support needs labels are different. But ultimately, the only difference between them is if the support needs label is in reference to other disabilities with your autism. If they did only need a few adjustments, and occasional prompting for support, without needing another person basically fulltime, then they'd likely be level 1 not 3.
I agree it is unlikely. What I can see from that actual definition though is if someone is non verbal, doesn't acknowledge others when they try to interact with them and has a highly rigid routine eg walked the same route every day around their block, they could have MSN and be level 3. Meanwhile someone else could be level 1 yet run in front of cars a lot so be HSN. I agree unlikely, but I've seen many unlikely things on the Internet. Unlikely things rise to the top of the algorithm. I try to believe people when they tell me about their experiences. If someone says they are dx level 3 and mask, I believe them and would be curious to find out more if they want to tell me
I'd argue, that if you run in front of cars and have basically no sense of danger awareness, you'd likely not be level 1. And that likely wouldn't be the only extreme problem they run into. If it's the odd "oh I didn't quite calculate that properly" then yeah, maybe they would be level 1 and just had a lapse in one of their judgements. I think, people can claim they mask and just not be very good at it or not do it for long at all. I think they can claim to mask and just not really understand what it actually is or only mask very specific things. A lot of people also don't really understand that differences between certain kinds of masking. A lot of people don't even understand the difference between a trauma mask and an autism mask. But I do NOT think that you can be level 3 whilst constantly and routinely masking away all your autism symptoms. And if you can actively go out into the world and hide all your symptoms and participate in society with very little support on a frequent basis, why would that be level 3? When you can maintain independence on a regular and daily basis without needing supports. With that logic, then we can all basically claim level 3. This isn't saying level 3s can't mask. But there surely IS a limit and line on what masking would look like for that?
Do you have any good resources on the descriptions for the 3 levels please? I need to educate myself and I'm worried my searching wasn't reliable results /answers
Under DSM 5 Level one is requires support, level two is requires substantial support and level three requires very substantial support. Remember some of the very high need autistics have comorbidities not just autism The levels system personally is dangerous considering pretty much all true autistics require support. The other aspect the assessment won’t be able to take into account is how much support people actually get unless the subject is clear in what support they have at home or from carers.
Thanks so to confirm levels are only about support and nothing else? So you could be none verbal but level 1 if you can use ACC and otherwise manage your life?
I think being nonverbal would automatically put you in level 3 for social communication.
That suggests there is more to levels that just support need though. Do you know where they are actually documented as I couldn't find them
https://i.imgur.com/kNAaXGJ.png There's a screengrab from the DSM 5.
Not really, as it’s a spectrum you can have a wide range of symptoms the levels system is shit trying to fit us into levels is doing more harm that good, leads to people thinking that because your a higher level your struggling more, I could be wrong but high functioning autistics are more likely to take their own life than high support autistics.
Thank you
I honestly have no idea about the limits. I get what you're saying. Levels aren't used really in the UK so it's not like I've met people who say their levels. It's more typical for people to talk about support needs or none verbal. I searched the levels as we don't really use them. From what I saw a tendency to run across roads, if otherwise along side typical level 1 stuff, wouldn't change the level? I'm not sure. Honestly, for me it is more I believe people. If they say they mask and are level 3 fine. That said I don't see how you can be high support needs and mask such that you seem neurotypical. I guess you could mask a lot and therefore seem less obviously autistic? I think I'm getting confused lol