#higher needs autism

[languageshead]

People saying they are "higher needs" when you point out harmful and misinformation that they are spreading about higher needs autism.

I have noticed this quite often, it is definitely not uncommon. When you are being called out about misinformation it's much easier to say that you are a part of that community as a "free pass" to validate anything you say than come forward that you were wrong and maybe reflect a little bit about what you have said.

Whenever people say "levels are ableist", "levels are stereotyping us" and I point out that this perspective is very low needs centered and it's usually late-diagnosed, low needs people that spread this kind of information that is incorrect and harmful people always, always end up saying "I am higher needs too", "I am level 2/3" and this makes me so incredibly upset.

First, if the person is being honest about their level, which honestly you just have to believe they are and hope for the best, since a lot of people seem to be self-diagnosing with "higher needs", which I absolutely do not agree with, that doesn't make them exempt from having typically "low needs/late-diagnosed actions". Being higher needs does not make you immune to saying bullshit and to ignoring other higher needs autistics. Being autistic also doesn't exempt you from being ableist, from being an Aspie Supremacist, being part of a community does not make you immune to being ableist to your own community. The biggest example of this is how often gay men are homophobic towards their own LGBTQ+ community, how often they can be transphobic, lesbophobic etc.

So, if someone is pointing out that what you are saying goes against the majority of the higher needs autism community, you do not get to say "I am higher needs" to validate what you are saying. I never, ever assume someone's needs over the internet and to call you out for harmful misinformation about levels and the general higher needs autistic activism is not assuming your level. If I tell you that what you are saying goes against what the majority of higher needs autistics talk about, I am not assuming you aren't higher needs. I am simply pointing out that you are being harmful to higher needs autistics, whether you are or not one of us.

Second, I am honestly very surprised to see people claiming they are higher needs while clearly not participating in higher needs activism and discussions. It's clear to all of us here, as far as I am aware, that levels are needed and that they are not ableist. All of my online "friends" (I call you all friends, because I remember your usernames and always check to see what you've been posting, even if we don't really interact) are fighting to get low needs/late-diagnosed people to understand our perspective and to understand that some of us do have more needs than others and that's fine. And very honestly, if one of us, who truly knows what we go through in the autistic community, keeps spreading this type of misinformation, this makes me so incredibly sad and I honestly am unable to understand why they would do that.

And I honestly assume (I know it's not really okay to assume, but be patient with me, we're all trying our bests and a lot of us are just tired with the backlash from the mainstream autistic community), by the things these people usually say that they really do not engage in our activism and do not truly understand what we try to fight for within the autistic community. So I do not know if they are late-diagnosed higher needs and therefore do not know about us, if they aren't higher needs, if they are higher needs yet refuse to participate in our activism, if they self-diagnosed higher needs... I don't know. Anyways, in any of these cases, telling you to keep up with actual higher needs activism (like what we do here, over at Reddit etc) is not, in any way, assuming you are not higher needs. It's telling you that you are clearly not listening to higher needs autism activism.

I always try to be nice and end up being blocked because people within the autistic community cannot take any criticism, ever. Just happened right now. I put so much effort into my words (which is much harder when you have a language impairment) to try to educate people, to be nice and let them know what they are saying is incorrect and people just assume I am either attacking them, being "ableist" or any other kind of misinterpretation of my words. Sometimes I think I will lose my mind over activism. I feel so left out, I feel like I am screaming at no one. I am so done with mainstream autism activism and I am so done being ignored. I think sometimes that I need to distance myself from activism because this is so hard to cope with emotionally. But at the same time I cannot because I cannot see misinformation and ignore, misinformation makes me furious, injustice against people like me and my friends here makes me absolutely mad. I cannot ignore. Maybe this is a symptom of my own autism, I don't know, if anyone does feel free to let me know. I can't ignore this. Anyways, this post was a vent. I am always very opened to criticism and civil discussions as long as long don't keep your arguments to impact phrases(+) everyone is done listening and as long as you don't block me when I am trying to have a civil discussion.

+ I am not sure if "impact phrases" is the correct word to what I am saying, I had to google this on translator because I don't know how to say this in English. By "impact phrases" I mean very used things without any meaningful thought like "levels are ableist", "levels divide us", "levels are new functioning labels". If you actually believe these things, I am also opened to explain why I (and a lot of higher needs and allies) think this is incorrect.

[zebulontheplanet]

Things that should be accepted in the autism community that isn’t currently acceptable or talked about enough or talked about as gross.

Being nonverbal (as in can’t talk at all permanently)

Having caretakers

Having other people do ADLs for you. Especially bathing and toileting.

Being talked to in simplified language

Being dirty

Drooling

Chewing on things

Stimming violently and loudly

Hitting yourself

Vocal stimming loudly

Being higher support needs

Being higher support needs and a POC

Being intellectually disabled with autism

And so much more. I shout-out anyone who are these things or do these things. You are amazing.

[growling]

the way this website treats disabled people is actually horrendous

[sillylandmagic]

Everyone is all about supporting autistic folks until they do things that are ‘gross’ or unhygienic.

For example, I spit when I talk because It’s hard to control my saliva. I also am prone to drooling.

I couldn’t dry myself off effectively until I was over 13 years old. I don’t wash my body frequently other than my privates sometimes because of deficits in motor skills and just the inability to effectively do it each time.

I can only slightly scrub my hair with shampoo but it’s dirty after a day because i can’t wash it efficiently. I go days without washing my hair.

I can’t shave or trim any body hair, I can’t remember to use deodorant. I don’t brush my teeth for over a week because no one tells me to and I can’t reliably do it without support.

I’ve never been able to wipe enough after using the bathroom usually leading to wet spots in my underwear. I’ve had UTIs because I can’t realize that my bladder is full. It’s slightly better now but I remember a year ago I held everything in so long that I dribbled some in my underwear because I didn’t go to the bathroom until last second. This happened frequently at home and school. And I would be too embarrassed and didn’t change.

It’s not gross or nasty that certain autistics need substantial support for things like hygiene, toileting, and grooming. Or don’t have support and are left dirty because they can’t do it themselves. You’re not any less human or a person for dealing with these things. I love you/platonic 🫂

[spooksforsammy]

Everyone supports disabled people

Until the disabled person is higher needs and they realize they have to listen to the thoughts, feelings, opinions and preferences of those with higher needs.

[boughkeeper-dainsleif]

what i need level 1s to understand is that when i say "i can't do this because of my autism", im not saying "all autistic people can't do this", i'm not saying "doing this is hard and i don't want to", and i'm (usually) not saying "people have told me i can't do this".

what i'm saying is that i'm aware of the ways my autism limits me personally, and i've realized that successfully doing the thing is not a realistic or achievable goal for me. sometimes i would love to do the thing. sometimes everyone in my life believes i can do it, but i've realized i can't. and i'm very well aware that not all autistic people are like me, and many can do the thing.

i need level 1s to comprehend the fact that not every autistic person has high intelligence and independence. it's cool if you do and nowhere did i ever say no autistic person is like that, but you need to acknowledge that some autistics are genuinely not as smart or independent as you are, and that no amount of encouragement or motivation will change that.

[stuffieautism]

i think we also need more compassion for those of us with higher support needs who have difficulties communicating and understanding things, with or without an intellectual disability. i get made fun of a lot for not having “proper” communication abilities that “match” my age and for not understanding “obvious” concepts/jokes that to me were not obvious at all. please have kindness for autistics who have difficulty with things you don’t. even if you are also autistic.

[birdofmay]

Important: If a person on Tumblr says that somebody else writes your posts for you, and wants you to prove that you write everything on your own:

Don't respond. Don't upload a video of you typing or using your AAC device. Block that person, or ask someone to block them for you.

They won't listen to you and you can't convince them. They're just mean. It's spam. Really, just ignore them.

Here's a long post I wrote about that today, in case you're curious:

[rurustims]

im rather annoyed.

so, first and foremost, this is about Savant Syndrome.

Savant Syndrome, is when an individual with lower than normal IQ range has some sort of exceeding ability slash a talent.

Many, don't educate themselves and call themselves Savants because they have a heightened ability to something, but they're not even Intelectually Disabled.

someone has mentioned Savant Syndrome so i just very generally mentioned that people call themselves Savants a lot very incorrectly.

and this other individual goes "well technically it isn't incorrect because Savant derives from this french word and that just meaning genius. the word just came out of fashion so you could still call yourself a Savant like you would say genius"

and yes okay, i know what Savant *technically* means. but that is not it's usage anymore however you say it USED to be used, when people say that, it refers to Savant Syndrome and that's how it's been used, as mentioned it so apparently "fell out of fashion" with its older usage, and when you use that word, it connects with Savant Syndrome.

i brought up how something has been used incorrectly by people and get told "well technically that's not wrong—" like please just dont, it feels like you're speaking over me, someone's who's intelectually disabled on a matter you dont seem to understand. for clarification, no, i dont have Savant Syndrome but i am Intelectually Disabled.

[perplexingluciddreams]

Today Mum and Dad both went to another part of Scotland to look at houses. So I am with sister in the house, just the two of us.

I am the older sibling by two years. But sister is still the one that gets asked to stay home today (and other days) to look after me.

Sometimes being this disabled creates situations like this. It is often hard being the older sibling but so disabled that I take the "role" of the much younger sibling.

I have lots of feelings about my younger sister helping take care of me.

Also complicated feelings about my own age and how old I feel compared to my actual real age.

But I can't put any of the feelings into words. I just know they are there and they are complicated and sometimes hard.

[helicidal]

pick-me autists

[zebulontheplanet]

Anyways.

Higher support needs disabled people needing help with things like eating, going to the bathroom, and showering isn’t gross or babyish.

It isn’t gross to have help showering, or using the bathroom, or any other bADL. Disabled people deserve not to be called gross for needing help with hygiene and things. Disabled people deserve to be seen as people if they need help with these things.

I’m a disabled person who needs help with showering, grooming, and sometimes eating (yes, physically getting the food from the fork to my mouth) and that doesn’t make me gross. That doesn’t make me babyish. That makes me a higher support needs adult. That makes me someone who needs help. Stop saying that these things are gross to need help with, or telling people that “you’re grown, you should be able to do this”. That isn’t helping anyone.

Especially with the autistic community constantly screaming about how we don’t need help with these things, when a lot of us do. A lot of us do need substantial help with bathing, grooming, and toileting. Some of us do need substantial help with all these things, and people need to realize that.

[heather-elissaaa]

Statements about autism that shouldn’t be controversial -

If you do not meet the diagnostic criteria for autism, then you are not autistic

Autism is a disability, not a different ability

Support needs labels are not the same as functioning labels. They are beneficial and often necessary

Parents of autistic individuals are entitled to be a part of our community

It really should be that simple

[sillylandmagic]

everyone is okay with disabled People until they chew with their mouth open . Food falls out their mouth . or have hard time with chewing to the point of going multiple hours without eating

[antlerkitty]

“Everyone likes quirky hand flapping autism but no one likes social issues autism”

Stop.

If you are above level 1 autism in any way, you automatically are not socially acceptable. Doesn’t matter if you only have RRBs above level 1. When I stim, it’s not quirky or cute. It’s disruptive generally, it can be annoying, it can be painful, it gets me looks, it gets me whispered about, it gets me called derogatory things, it gets me touched without permission.

My RRBs disrupt many areas of my life. Because of my RRBs, I have a lot of confusion. I can’t cope with the day without my special interests, which disrupts my class work and homework. I can’t process instructions well or do tasks well because I get distracted in my own head and start stimming harder and getting very lost mentally. I struggle to switch tasks a lot, which means I get yelled at. I struggle to participate in things due to always stimming. My sensory issues cause daily sensory overload and shutdowns or meltdowns, no matter what the situation is.

This also causes social issues, even though I’m likely level 1 socially, it quite literally affects everything.

Again with the monoliths. Autistic people aren’t monoliths. Stop acting like we are, please.

[arquaticdreamer]

Many struggles of being level 3 HSN is that you can’t just have any kind of laundry detergent, or any kind of type of clothing, any type of fabric, or any type of shampoo and conditioner, not being able to eat just any type of food, sleep in just any kind of bed with any kind of mattress,or having just any kind of pillow, or any type of sheets, or having to use any type of keyboard to type on, or using just any type of fork, spoon, or knife, it all matters and NT and other autists dont understand why we need things to be just right. And can invoke a huge meltdown, or even aggressive stimming, SH stimming, and Cloud really wishes this was more talked about, and acknowledged by other Autistics in the Autism community.