#higher support needs

[zebulontheplanet]

I think people have greatly watered down autism into this silly label or identity that they can collect.

I’ve seen multiple posts that defend that autism should be an identity, similar to how sexualities and gender labels are. I think they’re missing multiple things with this analogy. First, you cannot help your queerness. It’s not simply a “label” it’s your whole being. It’s who you are.

I want people to realize that autism is a serious disorder for over half of people diagnosed with autism. From more then 30% being higher support needs, to more than that having different comorbidities, it’s a serious disorder. Not only can it affect every aspect of your life, it can severely affect how your health is, how independent you are, etc.

To a lot of people autism isn’t “a silly label” it’s a disorder. A disorder that comes with comorbities, that affects how they speak or don’t speak, how they view the world, how the process or dont process things, etc.

Higher support needs people need to be recognized, and in turn you have to recognize the disorders that they have. You can’t ignore them. You can’t simply shrug it off as a silly little label or identity.

People deserve to have their life altering disorders taken seriously and not turned into something that’s shrugged off and seen as another add in the newspaper. Autism is serious. It’s a neurodevelopmental disorder. Say what it is. Don’t water it down.

That’s all.

#zebrambles #long post #autism #actually autism #actually autistic #support needs #high support needs #low support needs #medium support needs #higher support needs #Zebplanet

[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.

#autism #actually autistic #mid support needs #level 2 autism #level 2 autistic #higher support needs #autistic #support needs #medium support needs

[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:

#severe autism #high support needs #nonverbal autism #nonverbal autistic #actually nonverbal #intellectual disability #cognitive disability #level 3 autism #level 2 autism #nonspeaking #actually nonspeaking #higher support needs

[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

#autism #actually autistic #autistic things #autistic adult #autistic experiences #autistic community #autism community #autism spectrum disorder #ASD #special interest #neurodivergent #neurodiversity #neurodiverse stuff #actually neurodiverse #disability #disabled #moderate support needs #higher support needs #being autistic #autistic spectrum #autism advocacy #autism awareness #autism acceptance #audhd #audhd things #autism assessment #aspergers #low support needs #autism levels

[atypi-cals]

The queer urge to go to pride vs the exhausted disabled apathy towards the event

#i know its going to overstimulating and physically exhausting and painful and loud #this is about autism and physical disability feel free to relate from either or both sides #we're both excluded as hell ESPECIALLY us level 2-3 autistics #autism #disability #physical disability #autistic #high support needs #higher support needs #autistic adult #lgbtq pride #lqbtq community #queer community #(tags for reach im not personally using them all to id myself tho theyre all relevent to a post abt my life yk) #(because when i talk abt inaccessibility at pride i want it to be seen yk) #viktor.exe #cass.exe

[tekra-brings-the-rain]

please listen to level 2 autistics please listen to higher support needs autistics we need support we aren’t disgusting but our identities are drowned out by allistics and lower support needs if you want to know about us ask us and please don’t touch my aac that’s my voice taking my aac is like putting your hand on my mouth please don’t play with my aac it’s voice not toy thank you

#autism #actually autistic #neurodivergent #medium support needs #higher support needs #level 2 autism

[spooksforsammy]

Despite my age I still need help with many tasks that my four year old niece can independently do.

I have low-medium support needs closer to the medium side, which is why just say medium support needs. I need help with some Badls and just about all Iadls

Here’s an idea on what it means for me to be medium support needs. This is a extremely simplified version of explanations

Badls:

Basic activities of daily life are

Eating (moving food to and from mouth) dressing, personal hygiene(washing, doing hair, shaving ect) , toilet, and transferring(moving from one place to another)

I need help with personal hygiene, toilet and occasional dressing

Personal hygiene: I need intensive prompting to shower, change clothes and need help with shaving. When it comes to showering, have be told multiple times, over and over and over and some days that’s not even enough. Something have to have someone turn on shower and get towel and clothes and tell me to get in.

During the school week I brush my teeth on a schedule, so come weekend and breaks have to reminded often do so. Middle school had be reminded brush teeth no matter day or week so is improvement and hopefully one day can remember do no matter schedule or day.

Washing hair is problem not only because hate water in hair and face but because how many steps are. I’m still deeply afraid to wash hair for multiple reasons and often convince sister do for me. Even times where managed do self, did wrong to point where Sister still have go in and rewash. Have thick hair so have scrub correctly and in the shower freeze up. Hard even open eyes.

Tolieting: when say need help don’t really mean emptying but getting there so can empty. Can’t tell when need use bathroom until really bad so every few hours am told go try. If not told use bathroom will hold until no option but use, so do pee self at times.

Dressing: this isn’t a huge problem of mines, but if not told change clothes will keep wearing same ones. This also because memory problems, so don’t remember if already worn or not. The only thing really allowed rewear is jackets because safe jackets always wear when out.

IADLS:

Instrumental Activities of Daily Living are

using the telephone, shopping, preparing meals, housekeeping, using transportation, taking medication(s), and managing finances. I need help with all these.

Using the telephone:I don’t need help using the telephone in sense of getting on and off phone or tablet, but when come to phone calls or staying safe (not giving out too much information that personal). My boyfriend has access to all my accounts and monitors them to make sure no one does anything weird or that can ruin my safety. My boyfriend and sister makes my phone calls, helps with emails (saying what type, what not do ect) and not able schedule things by self.

Shopping: im not allowed to leave the house by myself unless it’s to go to my boyfriend’s house or to the bus stop (both times it’s a route where either can be watched or someone family know and trust can keep eye on me. So even if along am being monitored). Im not allowed in stores alone as they are huge and i wonder. I also have low awareness and am not aware when danger is around or happening. Am allowed go shopping with others but that’s just walking around.

Transportation: this is also appart of low awareness. Can’t ride bus alone, can’t drive. Can’t even ride bike. Not fully aware world around so wouldn’t know where go. Also get overwhelmed on buses around many people and shutdown; shutdown ruin sense of awareness more.

Medication: is memory problem and can’t tell when need take. For example pain killers, can’t tell when bad enough to take or when in pain and need take. Haven’t been on prescription in years but was on, nana had bring pill to me take otherwise wouldn’t remember.

Finances: don’t know how manage money. Don’t know how much money apps work and can’t count. Couldn’t understand how much need spend how much have. When come cash, lose often because forget where place. Also struggle with saving up, so when someone in charge, can’t spend just because have. Sister and boyfriend in charge of managing for me but try help.

Meal prepping: I don’t fully understand how to meal prep and am not fully trusted around the stove, oven and knives. When using them, have to have supervision otherwise will cut or burn or otherwise hurt self. Don’t understand shouldn’t do certain things (example: made caramel, boyfriend was in kitchen watching make and was stirring wrong but didn’t know was doing wrong and burned hand and thigh). And certain things shouldn’t go certain places. Also can’t stay focused long enough do and stims and sensory issues get in way.

Housekeeping: can clean up space but once again have be told. And even if clean, one boyfriend help withe everything clean up and someone else (sister or oldest brother) have go back in and actually clean up. Am working on it but is sense of don’t understand what need be clean what okay and remembering where everything go so put in spot think belong. Prompting isn’t enough to clean up room though, to many steps involved and remember what belongs where is something struggle with deeply. Also includes sensory like having touch multiple things, sounds and smells. Stims also get in way to point where not able do.

And something didn’t include in alot of these (even if should have) is fact that sort of ‘freeze up’ when having do them. Like with bathing, get stuck like unable move when need shower. Even if want move can’t, and in some of these times can’t even move mouth or get brain think. Just stand there.

Taking baths would help but feel held down when taking them. When sit in water unable move, feel like sinking and being held down at same time. Start chocking and gasping for air like breathing not possible.

In other cases, body and mind feels like just… broke and not able do anything anymore. Will sit there unresponsive until body ready continue on with task or thought of task disappeared.

For alot of Iadls not able actually do self so someone else doing or going in and redoing for me. I’m working on some ( shopping, telephone) but even if able get down, someone else will always need be around help.

#speech4amy #actually autistic #disabled poc #disability #autism #neurodivergent #medium support needs #neurodiversity #higher support needs #actually autism

[flowercrowncrip]

You can tell a lot about someone based on how they wipe your arse and you can’t convince me otherwise

(Just in case: this is about disability and needing carers, don’t be an arsehole just because arses are mentioned)

#cripplepunk #higher support needs #I had one carer who would scrub with dry paper and it was awful every time

[whovianblogger]

over time, i’ve realised that being high masking AND being moderate support needs at the same time is probably why i am ridiculously anxious and exhausted every single day, for the entire day.

#moderate support needs #autism #autistic #actually autistic #neurodivergent #higher support needs #level 2 autism #level 2 autistic #autism spectrum disorder #neurospicy #disabled #disability #nerd #tumblr

[zebulontheplanet]

People don’t realize just the sheer mental toll it has on you to see abled and allistic people doing things that you can’t do.

Oh nice, you have a new job? I haven’t worked for years due to my disability and maybe never will.

Oh nice, you’re moving into a new apartment independently? Sounds fun, I probably never will be able to live on my own.

The utter strain all of this puts on someone’s mental health is HARD. Being higher support needs isn’t all sunshine and rainbows folks. It isn’t fun to not be independent, to rely on others just to fucking do simple things. It’s hard, it hurts. It isn’t fun to have every aspect of your life controlled by others. It isn’t fun to be doing things that your 14 year old sister has already excelled at. It isn’t fun.

I will never ever understand people who think that being higher support needs is easy and all rainbows because we usually don’t work and “get everything handed to us” like please. Just listen to us once and awhile.

#zebrambles #autism #medium support needs #actually autism #actually autistic #higher support needs #mental health #disabled talk

[sevspins]

I am not able to mask very well or at all really.

as a moderate support needs autistic person i have never been able to mask my autism well, people don’t meet me and just think i’m “weird” but aren’t sure what it is, i get asked if i’m autistic outright, i get asked what disability i have…sometimes in a mean way and sometimes in a genuine way.

It is hard not being able to mask, I wish there was more representation for people who are unable to mask, who cannot put on a face and pretend. I really try to but i don’t know why I can’t? Why is it so blatantly obvious to people?

Does anyone relate?

#masking #level 2 autistic #lvl 2 autism #higher support needs #moderate support needs #unable to mask #actually autistic #autism #autistic community #disabled #actually semiverbal #semiverbal

[nonspeakingkiku]

Kiku isn't sure what it would be considered (maybe lack of awareness of danger) but Kiku will touch and eat things that are hot and it will not occur that they are hot until kiku has touched or eaten them and registers they are hot. 🤦🏻

#autism #autistic #actually autistic #nonverbal #nonspeaking #high support needs #higher support needs

[devouredead]

Thinking about childhood today

Thinking about when I started school. And kids would talk to me. And I just... would not speak. Just did not have words. They said I was cold or rude. Eventually called me a ghost. Treated me as a non-person. Would not talk to adults, either. Not teachers, not doctors.

Thinking about how that continued on forever. They ask me a question, I could show them an answer, if they asked what book or what animal or anything, I'd show them but that's 'rude.'

Thinking about how I could not speak to my parents, only pushed out words to them when they threatened me. And how that continued on forever.

I struggle to speak without very specific scripts. I can write. Not with more social knowledge but at least words come, I have so many words in my brain. I use AAC pretty well. But I never had words for my parents or my grandparents, for my cousins or aunts or uncles. They grew old and away or passed away and I never had 'conversations' with them that weren't 'hi how are you okay bye' (a script) or echoes that they half-way understood. My father used to frequently tell me he didn't know who I was because I didn't speak to him. Of course, he didn't want scripts and was annoyed by echoes. He wouldn't look at the art I made or read my writing or watch movies or shows or share music with me. He refused every other way I had to communicate. My dad would not read the (literal) writing on the wall so... in the end he was right. He never did know who I was. My siblings and I echo (echolalia) back and forth to each other and that is our language, but as speech therapists will account for, echo isn't considered 'independently speaking' which I guess is their way of saying 'not speaking the right way,' which is to say, 'so that the outside understands.' Which is a shame because I love so many things I have many echoes for many occasions! They are just not original phrases or thoughts, just adopted reactions because as it's been made painfully clear to me, I will never have my own. As if I am the impression of all that touches me but nothing else. If people see me echo or script, they assume I talk with no difficulty. But I can't, and when they inevitably experience that, they get angry and think I'm rude/cold/hateful. And they take it out on me and are congratulated for it because I'm so hateful for not speaking. I get tired. Tired of living for abuse. Even other people with speech difficulties, because guess what? They don't magically understand, either, and I don't have a way to explain because of the assumptions of how being semiverbal works, at least for me. The assumption is always, somehow, that you speak typically except for episodes of speech loss-which is bizarre to me, because I (and the majority of other developmentally delayed and intellectually disabled autistics I've known in the flesh) who have been semiverbal definitely do not communicate like that. But then, I guess that makes sense that people don't know that, because we're not really among the autistic people who typically 'get out much.' Why is speaking so hard? Why can't I understand it? Why can't I do it right? How come I know where to put italics but can't make the people bark sound? I've had decades to be at least as good as a middle schooler so why can't I do it? Even if I try to talk to friends when they repeat back to me I realize that I haven't said enough to be understood or to make sense.

Why am I so bad at this? It's rhetorical. Of course I know it's my autism. It just affects me so bad that I can't make new friends or ask necessary questions or to protect myself. I just stare at people I'd love to talk to and reach out to but we can be two feet apart and oceans away at the same time.

Cuz we'll never talk, and that's just the truth.

My experience of semi-verbal/semi-speaking is all the time, not episodic speech loss.

While I have empathy for those with episodic speech loss and nonspeaking people, our experiences are not the same. Please stop assuming all semi-speaking people suffer episodic speech loss but otherwise have normal speech. You're erasing people like me, thanks.

-

I'm very much for everyone staying in their respective lanes! All our experiences should be respected and should have their space. For that reason...

Verbal/typically speaking people

People who experience speech loss episodes/selective mutism/anxiety related speech loss/speech difficulty is not a permanent state of being

Nonverbal/nonspeaking people

DNI with this post please! It's not for you-

#actually autistic #actually semi verbal #actually semispeaking #semi speaking #semi verbal #childhood #I still don't understand #if I could give the answer #why does speaking out loud matter so much? #but it does and to everyone #echolalia #echo #developmental disability #who will keep the police from killing me even if I could speak to them? exactly #who will keep the transphobes from attacking me even if I could call them out? exactly #who will keep doctors from medical ableism even if I could speak to them? exactly #semiverbal #semispeaking #moderate support needs #higher support needs #autism #asd #neuropunk

[transbutchbluess]

me : sharing an experience caused by my disabilities and explaining how able-bodied and neurotypical people have no idea how many things they are able to do and how many things are necessary in life because for them it’s easy/instinctive. adding that i’m extremely concerned because they often believe that i, a mostly able-bodied person (struggling with some chronic pain and fatigue but not needing mobility aids or anything like that) with neurodevelopmental disabilities, low/lower middle support needs, who struggle with all iADLs but no BADL, "cannot do anything at all" when i am actually very privileged in the disabled community so i worry about how they perceive people with higher support needs than me. explaining that me not being independent and being unable to do iADLs is far from being the most disabling thing out there, since many people cannot do any BADLs without help. using the comments "that’s not autism anymore you’re just completely unable to do anything" and "so you’re collecting every single disability right, there’s nothing you can do independently at all, that’s so hard for your caregivers/family" as the starting point to explain that.

random people : yes comments like these are so annoying !! people tell me "but you’re always tired/in pain" or "it’s not that bad" !! it impacts me a lot it’s awful

me : guys. that was not what i was talking about. ableist comments are bad and they also impact me negatively but the point here was material impact on life, how abled people do not have an understanding of abilities / disabilities and how that results in harming or neglecting disabled people.

#autism #actually autistic #disability #disabled #autistic struggles #autistic community #low support needs #middle support needs #high support needs #higher support needs #ableism

[sparklesquids]

I’m glad that higher support needs autistic folk are fighting more for representation (especially on reddit) because it was starting to make me a little mad lol 

I was starting to see posts that were like “My autism is really difficult for me to handle because of [massively difficult to handle real-life repercussions]” and comments would be like “It’s not a disability! It’s just being different :P” 

like friend we can recognize that for some people being autistic isn’t particularly disabling or a big struggle but for some of us it sure is hard yo, we can support both sides of the community provided that people with higher needs don’t invalidate lower support needs folk and people with lower needs don’t brush aside the struggles people with higher support needs have 

especially because there’s a lot of frequent overlap that a lot of peeps could learn from, like I had to explain to one of my lower support needs friends some parts of like even though I get overwhelmed much faster than they do I spend a lot of time trying to prepare for burnout and overload so it can be less of a struggle later on and I gave them ways I cope with that, and some of my lower support needs friends helped me feel less ashamed about aspects of my autism and helped me find more joy in the community 

another /rant for y’all ig

#autism #support needs #higher support needs #high support needs #low support needs #autism level 1 #autism level 2 #autism level catastrophic #being autistic #autistic community #late diagnosed autistic

[gaybitch-3000]

I am using words, why are you not understanding

Bad episode at school today, I use words and people still dont understand. I feel like I speak a different language

#semiverbal #level 2 autism #higher support needs