#the low support needs autistic community needs to do better

[engagemythrusters]

“Neurospicy” lends itself to those who are able to be viewed as “quirky” by society. By using it as a replacement for “neurodivergent,” you are alienating a large population of the people who fall under that category.

[five-thousand-loaves-of-bread]

ok i need. need. NEED. you all to understand what high support needs autism actually is. not just higher support, but highhhh (high) support.

& honestly me, am not even fit to talk about this!! but knowing popular (often low support) autism content creators & authors tokenize me & include me in justification “well i listen to high support needs people and they need—”

high support needs not just need remind take meds, not even need remind eat, need remind shower. if you think “high support needs” & those struggles come first in mind & see those as most represent of HSN, most classical way of be HSN, then you wrong. you wronggg.

many HSN autistic, not even “advanced” enough (for not have better word) to able use reminders. on average day often need physical help. for a lot, need complete physical help. need complete physical help hold spoon n fork, or not able be a part at all and need other people do it. need be told open mouth chew swallow sometimes. need other people clean up drool & spill from mouth & mess.

they have worth. deserve all the fucking help they need.

“difference between low & high support is not actual amount struggle because all struggle inside same but that high support show more external outside struggle & those struggle more annoying for people around them” hear this so often and make blood boil because cannot be farther from truth yet some you all so loudly proclaim.

then tell me why only hear LSN say this. why only hear LSN on internet. why all big content creator big authors big autistic speakers all LSN.

tell me how someone nonverbal and no robust communication no functional language struggle even nonverbally communicate not even AAC not yet or not ever ever, how that same inside as someone who able speak who speak fluent who able communicate want needs dreams have conversation with words

both struggle. but not fucking same struggle.

many people in between. but you not get use people like them like me to give self shiny credential of “i know high support needs because i listen”

don’t use me. you embarrass me.

[nightcolorz]

always thinking about the development of abed and Brittas dynamic. Pov ur Britta and ur starting community collage and u meet a visibly autistic guy in ur Spanish one class and when ur introduced to him u can’t help but think of ur older brother who works with autistic kids and u wonder if ur capable of making positive change in someone’s life the way he does or if ur always going to fuck everything up like everyone says u do, and u befriend this autistic guy in ur Spanish class who realize as u soon become close friends rlly needs a type of daily support that he isn’t and has never been accommodated with and ur like wow, sad, what if I can be the support he needs, and obviously you can’t, bcus ur one person and also u know nothing about autism and also this random man from ur Spanish one class has an acute mission to push u into emotional despair bcus ur earnest desire to help him bcus of ur personal internal conflict combined with ur huge amount of ignorance reminds him of his mother and he wants to consciously emulate his relationship with her with u so that he can use footage of u to make a shitty art film about his childhood trauma and that’s when u realize that u aren’t ur brother and also are stupid asf to think that u can be like ur brother for ur adult friend who is low key having some form of psychotic episode but even still you’ve grown to love this autistic Man U met at ur Spanish one class and it breaks ur heart everyday that u will never be enough to meet his neglected emotional needs so u decide to become a psychology major so that maybe one day u will be adequate enough to do this right, bcus rlly u have a lot of unaddressed existential terror that the world is a cruel unjust place that u are too insignificant to do anything about and it fills the hole in ur heart a little to feel like u are making an impact in at least one vulnerable persons life, but ultimately ur an ignorant and self centered collage student and ur autistic friend from Spanish one loves to remind u that u are not enough and ur attempts to help him will only ever backfire or register to him as infantilizing condescension and as u try to therapize ur adult friend u become the one getting therapied as he turns every attempt of urs on its head so that now u are the one being confronted by ur own psychological problems which eventually come to a head when he comforts u about ur own failure while he’s having a hallucinatory psychotic episode prompted by his mom giving up on him where he tells u in song form that you are “broken” bcus u desperately want to help people but u lack the tools to make any positive change and u cry a whole lot about this bcus from now forward u are forced to reckon with the reality that u are not qualified to fix ur disabled friend bcus ur a psychology student in collage and he has autism and psychosis and childhood trauma and all u can rlly do about that is be a good friend and an adult about it and also accept that ur disabled friend is just as much of a person and an adult as you are and u cant violate his autonomy by using him as a tool for ur own self betterment and now u don’t use ur baby voice on him quite as much bcus you’ve learned that ur friend is going to psychologically torture the shit out of u if u try to be his mom so instead u set ur sights on being his collage friend who he can talk shit with and such and everyone’s just going to try their best

Then pov ur abed and ur like lol. Britta is Talking to me Like im five. What if I stop talking to her to emulate my childhood speech delay so that she’s forced to deal with the burden my mom did and she leaves me like everyone else does so I can make a movie about it. Oops she’s still here. Well, her romantic subplots would make rlly good sitcom storylines in the tv show that is my life. 🍜🍜🍜🍜🍜coolcoll

[autismaccount]

I've reached 35 responses! They're very interesting, but the sample size is still small, and I don't think it's at all representative of the Tumblr autism community. If I can't reach at least 100 responses, I don't think I'll be able to analyze Tumblr community views on support needs in depth. I'll still post descriptive statistics for the overall sample, but I won't have the statistical power to do anything else.

I'd really appreciate if everyone could help by taking the survey and reblogging this post to their followers!

As a reminder, the survey is meant to understand how people use support needs labels. For example, what makes someone low support needs and not moderate support needs? The survey also helps show what the community is like in general in terms of demographics and experiences!

A summary of the current survey results are under the Read More. Again, especially if a community that you're in is under-represented, please help by spreading the survey link! I'd especially love to hear from more people AMAB, racial/ethnic minorities, people who are not yet diagnosed or were diagnosed as adults, and higher support needs individuals!

Age: Most participants are young; 60% are under age 25%, and 20% are under 18.

Gender: Over half of the sample is AFAB nonbinary, almost 1/3 is trans men, and almost all of the remainder (14%) is cis women. Only 2 people who are AMAB have taken the survey.

Race/Ethnicity: Non-Hispanic White people are very over-represented, making up 82% of the sample.

Diagnosis: 57% are professionally diagnosed, 20% are informally or soft-diagnosed, and 14% are seeking a diagnosis. Only 9% are neither diagnosed nor seeking a diagnosis.

The most common diagnoses are ASD with no level (33%), level 1 ASD (25%), and "mild autism" (13%).

16% were diagnosed before age 8, 24% between ages 9 and 15, 32% between ages 16 and 18, 12% between ages 19 and 25, and 16% over age 25.

Autism Support Needs: The most common self-identified support needs label is "low-moderate" (43%), followed by low (23%) and moderate (14%). Most would benefit from but do not need weekly support (31%), only need accommodations and mental health support (17%), or rarely need any support (6%).

Autism Symptoms: On a severity scale of 0 (not applicable) to 3 (severe), the average is 1.7 overall, 1.8 socially, and 1.7 for restricted-repetitive behaviors. The most severe symptom is sensory issues (2.1), and the least severe are nonverbal communication and stimming (both 1.5).

83% are fully verbal, and 97% have no intellectual disability.

38% can mask well enough to seem "off" but not necessarily autistic. 21% can't mask well or for long.

Most experience shutdowns (94%), difficulties with interoception (80%), meltdowns (71%), alexithymia (71%), echolalia (69%), and autistic mutism (66%). Very few experience psychosis (14%) or catatonia (11%).

Self-Diagnosis: 20% think it's always fine to self-diagnose autism, 29% think it's almost always fine, 31% think it's only okay if an assessment is inaccessible, 71% think it needs to be done carefully, and 11% think it's okay to suspect but not self-diagnose.

15% think it's always fine to self-diagnose autism DSM-5 levels (including if the person has been told they don't have autism), 15% think it's fine as long as autism hasn't been ruled out, 21% think it's almost always fine, 18% think it's only okay if an assessment is inaccessible, 36% think it needs to be done carefully, and 36% think it's okay to suspect but not self-diagnose.

26% think it's always fine to self-diagnose autism support needs labels (including if the person has been told they don't have autism), 29% think it's fine as long as autism hasn't been ruled out, 37% think it's almost always fine, 29% think it's only okay if an assessment is inaccessible, 43% think it needs to be done carefully, and 6% think it's okay to suspect but not self-diagnose.

Disability: 71% feel disabled by autism, 17% feel disabled by another condition but not autism, and 11% are unsure.

Comorbidities: The most common mental health comorbidities are anxiety (68%), ADHD (62%), and depression (56%).

The least common mental health disorders are schizophrenia spectrum disorders (0%), bipolar disorders (3%), tic disorders (6%), substance use disorders (6%), personality disorder (9%), and OCD (9%).

The most common physical health comorbidities are gastrointestinal issues (29%), connective tissue disorders (29%), autoimmune disorders (24%), neurological disorders or injuries (24%), and hearing/vision loss (24%). All others are below 20%.

Overall Support Needs: When considering comorbidities, the most common self-identified support needs label is moderate (37%), followed by low-moderate (31%) and low (17%).

[drdemonprince]

What are your thoughts on the terms “high/low support needs” or “high/low functioning” in regards to Autistics? Both terms feel inaccurate, limiting, and ableist. Are there better terms out there for us to use? Or should we reject more strict definitions and embrace stating our needs and capabilities directly and plainly?

Yeah both sets of terms flatten the diversity of the Autistic experience to a greatly misleading degree. I would qualify in the eyes of basically everyone to be either high functioning or low support needs, strictly because of the fact I have a job and can communicate verbally at a "high" level -- and this masks how much a fucking car wreck the entire rest of my life has been in order to prop that "functioning" up and how many things I cannot do. This kind of shit gets people denied disability benefits and accommodations which can straight up kill them. hell the only reason i have worked myself to debilitating illness multiple times is because i am assumed to be able to function highly and had no choice but to. on the converse, people labeled as low functioning/high support needs typically have their competencies and agency utterly denied to them.

it's far better to be really specific. the same way that it's preferable to do a body part inventory than it is to assume what organs a person has based on their assigned sex. what KINDS of support does a person need? what can they and cannot they do? you really cant take anything as a given. i know intellectually disabled nonspeaking autistic people who are very adept at painting and cross country skiing. meanwhile i am super physically inept at a ton of things. it's all so complex

HOWEVER I will say that we do need a framework for discussing the privileges that maskers have relative to Autistics who cannot mask. There are huge advantages i have and freedoms i enjoy being able to mix and mingle (kinda) in neurotypical society that my nonverbal and intellectually disabled peers lack, and this causes them to get decentered in disability conversations and that's a huge issue.

[crazychooklady]

Hey if you’re a self diagnosed person celebrating about being self diagnosed because you won’t leave a paper trail for the disease registry or whatever I need you to sit down and shut the fuck up.

The most vulnerable members of the autism community, those who rely on supports; those with lvl 2 and 3 asd don’t get to just take back their diagnosis when it’s convenient, most of them cannot mask at all either. It’s a condition that requires significant support. To those with high support needs, that level of care only becomes available after a diagnosis.

To rejoice over not being diagnosed is so incredibly insensitive towards those who rely on these supports to live. To those who will, be most vulnerable to reproductive violence (with those who are also intellectually disabled that has already happened with forceful sterilisation) and genocide.

The vilification of autism is primarily targeted at those with the highest support needs, and already I’ve also seen low support needs people throw msn and hsn people under the bus by saying ‘oh autistic people can do this’ regarding comments by JD Vance when that is not always necessarily true. An autistic person’s worth is not linked to their ability to do certain tasks and you’re perpetrating eugenicist ideas to try and keep yourself afloat, shoving down those who struggle the most.

The ableism I’ve seen from lsn and the self diagnosed towards the msn and hsn lately has sickened me, especially when it’s such a dire time. Do better.

[flightofthestorks]

elitism and exclusion in audhd spaces towards higher support needs autistics/adhders and physical disabilities.

i have really been struggling with how the audhd/adhd/autism communities online have been handling other peoples needs and experiences. i just saw this video about how online asd spaces are predominantly late diagnosed lower support needs autistics at the moment (by audhd_academic) whwich makes a lot of sense of course because the information is so widely available online nowadays so a lot of autistics and audhders can finally find out what it is they were experiencing their entire lifes. and that is awesome, i am one of these people as well and i cant tell you enough how happy i am that i finally know what exactly i have been experiencing. i wont talk about this at length in this post, thats simply not what this post is about.

what it is about is the kind of elitism i have been seeing a lot. i call it elitist (which is probably not the best work but i cant really think of a better one right now) disability justice because i constantly see low support needs asd/adhders putting other disabled people off as "too much". this affects medium to high support needs asd/adhders, of course. the image we have of autism and adhd nowadays is very... slim. because so many lower support needs asd/adhders are visible on social media online (which in itself you must realize is such a huge priveledge, because we can even use so much of our time and ressources to make these posts which so so so many disabled people do not) so it seems like we get this kind of shock reaction when we see someone who does not fit this elitist asd/adhd standard.

what i have personally been experiencing is how people in online audhd forums have been putting me off as "too difficult" after me turning to them for support and advice on create a good living situation that makes it easier for everyone, not just me.

one commenter mentioned that that subreddit probably wasnt the right place to ask these questions because most people on there dont know how to be empathetic towards people with physical (invisible) disabilities. sorry for wording it too stringly maybe but i cant really say it in another way?

i was baffled honestly, i truly believed that i would get support and maybe some helpful tips. and some people were nice, like the person i was talking about above. however. the majority of people were not.

i dont even want to make this about this one specific scenario. i just feel so frustrated when i see this great opportunity of the internet and sommunity, like this beautiful acre of land ready to be built on. and instead of a beautiful house that homes a thriving community who do their best to support each other and some beautiful trees, flowers and vegetables we just get another parking lot.

"taking the easy way out" might be too simple of a phrase to use here. however, i truly feel like thats what it is for some people. you have the right to say youre disabled, because yes you are. you do not however have the right to tell a person that they are "too difficult", "not your kind" or whatever the fuck ur saying just because they are not the little neurospicy gremlin that you are that is disabled but has a lot of priveledges as being able to mask and being able-bodied.

you can still be an opressor when youre opressed.

i wont be able to round this up for now, i just wanted to start. the disability justice movement does not need you if you are an exclusionary, elitist autistic/adhder. please just try to be aware of your priveledges and that your standards will not fit anyone elses. i believe this can all work out, i truly do.

[pompomtheprincess05]

A bit of a hot take

I don't like it when people compare low support needs autistic characters to Music (the girl from Sia's infamous movie) who is meant to be a high support needs autistic character.

First let me clarify that I'm not defending Sia or that movie that she made, I do agree that it has a lot of issues and should not have ever been made.

However those "good" autism rep characters being either level 1/low support needs autistics (Abed from Community for example) or not canonaclly autistic but are viewed as autistic (Lilo from Lilo And Stitch for example) while labeling Music as the "bad" autism rep is a little unfair, because they aren't very comparable, it's like comparing a part time wheelchair user to a full time wheelchair user.

Not to mention the fact that there has been saying things like "no autistic person would eat gum off of a bench" when in fact, some autistic people espsecially level 3/high support needs people would as well as having meltdowns the way Music does or make "odd"/"funny" faces, I will say that the way Music is potrayed isn't good and is poorly written, however there are autistic people irl who do have the same traits as Music and therefore while probably not intentional, the people who are framing Music is the "bad" autism rep for having traits that level 3/High support needs autistics have as well is being ableist.

Overall what I can say is I think higher support needs autistics deserve much better rep than what they get and to be included.

[aro-culture-is]

i’m like 99% sure you can ask for advice here so here goes

so, basically i have a queerplatonic/platonic crush on my band president. AND I ABSOLUTELY DO NOT KNOW HOW I DEAL WITH IT. so, for some context we started talking last year because i just joined the school and the bad and we started talking around mid-year and we weren’t that close orginally but there was this night we had a long, deep convo and after that we started to get really close. after two months, i started to have strong feelings for her (but not romantic) and i think it’s a platonic or queerplatonic crush and i didn’t really go to school and band that often for a while because of autoimmune disease and when i was there i tried not to make it seem like i’m too excited to see her which kinda makes me worried that she thinks i’m iggoring her but we text a lot so. anyway, even though we usually don’t interact irl that much [:(] we still do sometimes, and whenever my score has a rest i always look at her. especially when she has a solo. one time we went to experience this colleg band thing and i asked for a hug and she accepted❤️ i wanna hug her again. i do kinda wanna get touchy with her but not TOO MUCH, y’know? besides, i’m shy/nervous around her and anyway, she’s alloromantic. but anyway, today during our cca fair we kind of kept on kinda locking eyes (accidentally?? idk. but i know i was doing it on purpose) and it made my aromantic heart flutter

anyways so i don’t know what to do should i say i have a platonic/qpr crush on her? though i can’t tell which one it is…..

uhhhhh so, as a nonpartnering sort, I think I'm gonna give some general advice, and leave the specifics to the crowd.

broadly: do you know her views on queer stuff? could you casually bring up "oh, I was reading a queer story --", or if you know she's queer-friendly, "oh, out of curiosity, how many of the flags do you know?" type of stuff? Just, get a general vibe of her views of 1) queer people, 2) what she does and doesn't know or think she knows, and 3) if she knows about aromanticism, what she thinks it is and how she feels about aro folks.

I like to start there personally, because it gives you a lot better of a place to start a conversation about your own identity if you have a common ground on what feelings and definitions are being used. It's really easy, I find, for someone to confidently state they know what something is / what you mean, and be totally off base to the point that you're having totally separate conversations and don't even know it.

To use an example: in high school I had a friend who... lovingly, he grew up rich and sheltered, and probably only was not diagnosed as autistic because he was low support needs. His social skills were, lovingly again, as well informed as he could make them, but executed like a train wreck that most everyone attributed to "boy genius is a little weird". (He was, simultaneously, the heart throb of our school, and a lot of guys realized some queerness because of him, but that's a whole other funny story)

He was super nice about me coming out as trans, but clearly in a "he's confused but got the spirit" way. No idea what I meant, but he knew it meant a lot to me. A few weeks after that, he quietly admitted, "I thought it was about like, gender roles like cooking and cleaning and stuff, and I'm starting to get the impression I might not be right about that."

...

So, I now recommend everyone start with "let's get on the same page about what things mean" before having any big identity chats lol. It often leads to a quiet revelation on their side that you're guiding it to "Hi, I am that identity", but also puts it in a place where they're free to ask questions, and in my experience, treat it a little more thoughtfully and seriously than if it were a fly-by "heyyyyy i am aro and i am scared of this conversation, bye!" that can happen with enough anxiety. totally (/sarcasm) not speaking from experience.

hope that helps? from there, just... keep up communicating, leveling the knowledge field, and if a relationship is what you want, do the work. talk about what that means for you. ask what it means to her. talk about if that's compatible, and how conflicts might be navigated. if that goes well, congrats! if not, congrats! you've probably avoided the messier options, even if it isn't what you'd like.

[amity-moonrise]

I don’t think people talk enough about this especially in the autism community:

Aspergers IS autism, and not acknowledging that is directly feeding into eugenics thinking and is aspie supremacy (yes, its a thing and it exists)

How? Well let me tell you a story. There is a man in Germany during WW2 named Hans Asperger. He was tasked with the job of trying to increase the intelligence of young children and study them, particularly autistic children. He was the same man who coined the name Aspergers Syndrome, which he used to diagnose children who he deemed “high functioning” (oh forgot to mention, hes also the one who came up with the high functioning and low functioning labels, which are bad, and ill explain why). Any children who were diagnosed with Asperger’s were treated vastly differently than children who were deemed “low functioning” autistic.

“Low functioning” autistic kids were euthanized and killed, not directly by his hands, but they were later killed. Anyone who wasn’t deemed high functioning, was killed.

There isn’t clear answers to whether or not he was a Nazi himself, when I tried researching this I found conflicting answers, and also if he directly partook in the euthanization of disabled people back in WW2. But there is tons of evidence that suggest that “low functioning” autistic children were euthanized, because Hitler ordered the euthanasia for disabled people.

The history of the diagnosis is rooted in eugenics. While some parts of the world still diagnose people with the diagnosis (some countries don’t use the DSM-V, they use their own diagnostic criteria which still use the old diagnosis), the diagnosis is outdated in most parts of the world and is no longer considered a separate diagnosis. You would instead be diagnosed with autism spectrum disorder.

Only issue here, people still try to justify the use of the old diagnosis, when the term is no longer used in most countries, under the justification that people who were diagnosed before the change still have the old diagnosis in their records. If that’s you, fine, whatever, call yourself an aspie or whatever, but you need to acknowledge that your aspergers is still autism, that you are just as autistic as someone who doesn’t have your diagnosis, and not doing so is supremacist thinking. If you continue to ignore this, you are an aspie supremacist, and I am not going to argue with anyone about this.

Yknow what else? Elon musk is also an aspie supremacist, and has avoided acknowledging that he is autistic, only ever referring to himself as an aspie. Do you really want to stoop as low as that man who is built like a cybertruck? Probably not.

So, how do you wanna make sure you are using the right terms that are NOT rooted in eugenics and ableism? Heres how:

- Stop using the old diagnosis. Even if it was what you were diagnosed with, if you can help it, stop. Use ASD instead, which stands for Autism Spectrum Disorder.

- Abandon the functioning labels. Use low support and high support labels, they are much more accurate and much more effective in describing what side of the spectrum you’re on, and are much better alternative than labels that are rooted in eugenics.

- Do not support organizations like Autism Speaks. Avoid supporting celebrities and influencers who still use the old diagnosis to describe themselves, or treat autism as something that needs to be cured. Support autistic run small businesses and autistic creators who DO use the correct labels and diagnosis and actually advocate for the community.

- SPEAK UP! The less that people talk about it, the less people will know. Talk about aspie supremacy, spread the awareness and hold people accountable.

- Always do your research. Learn what is appropriate to say and what is not to someone who is autistic. I can assure you, telling someone that they don’t “look autistic” is not a compliment. Learn to understand their boundaries and how they communicate, they’re not trying to be rude, they’re just autistic.

- BE AN ALLY! Do not infantilize us, do not treat us like a child, we are capable of being independent and making our own decisions. The more you actively keep us from growing, the more it hurts us.

[autistic-answers]

why do so many people try to make autistic people independent and to be able to go to work and act "non autistic"?

trying to do thar hurts my physical and mental health alot, it makes me feel like the world doesn't want me as who i am. :( I need a lot of help with daily things like get dressed and bathing. people say is should try do that myself but is very hard for me, take me long long time to get dressed and do it wrong and don't have any motivation to do it, I just wouldn't and would not survive without help. :( is having help with things okay?

I'm so sorry you're dealing with stress like this. Yes, having help with things is okay! Some autistic people are never able to be fully independent and that's just how it works.

Useful labels

I would like to introduce some labels to you that may help. I will define them based on my research. They are HSN, MSN, and LSN.

LSN = Low(er) support needs. This label is for people who can live independently with some/no daily life support.

MSN = Medium support needs. This label is for those who need support workers or caregivers to help with many of the more complex tasks, like cooking or managing money. But they can do many or all of the "basic" tasks like dressing and bathing independently. I am in this group.

HSN = High support needs. These people need significant help with many or all "basic" tasks like dressing, bathing, and eating food.

(I have a research article on these labels.)

No group of autistic people is more special, important, or "good" than another. All of these groups are okay to be in.

Understanding yourself

It sounds like you might be HSN. There is a community of HSNs online. I think it would help to look into HSN-related and higher-support hashtags to help you find people like you. You might feel less alone. I am in a "higher needs autistics" group on Tumblr and perhaps you'd like that too.

People are pressuring you to gain skills in the hopes that you might become MSN/LSN someday. While some HSNs achieve this, many don't. It's not possible for everyone. It's okay not to strive towards a goal that feels unrealistic and stressful.

You are allowed to be HSN (or MSN if you decide that label fits better). Maybe you will stay that way for your entire life, and it's okay if that's what happens.

Understanding others

Sometimes, our caregivers and helpers imagine unrealistic goals for us. They want us to be free, happy, and safe. So they imagine us becoming LSNs because LSNs have the most freedom and are less dependent on others.

I say "we" because my mom still thinks she can transform me from MSN to LSN. She is pushing for my dad to support me less with tasks like meal prep. The result is that I am eating simpler and less healthy meals (like microwave macaroni). Taking away my support won't make me magically prepare my own salads, it'll just make me stop eating salads.

Sometimes, we're doing as much as we can. We can't always take on more just because someone else thinks we can.

I wish my mom would be less eager to take away my supports and more eager to help me plan for a future in which I can get support.

They believe they are helping you. They are full of hope that if they just coax you hard enough, you'll become a happy and independent LSN. They think they are helping but they don't understand how much pressure they're putting on you.

Talking to them

Can you talk to the people who are making you feel pressured? They may not understand how you feel. Perhaps you could say something like:

"I know you are pushing me to be more independent because you want me to be happy and safe. But I'm struggling to take on these new tasks. My mental health is worsening. I'm not ready to do this alone and it's hurting me to try. Can we talk about setting smaller or different goals?"

There may be different ways to support your independence. For example, maybe a video or a set of pictures explaining how to get dressed would help you do it with less stress and frustration.

But it's also okay to say, "I don't think this goal is realistic for me. Trying anyway is going to cause me stress, not support my independence. I want to set a different goal." Or, "I don't think I can handle more tasks right now. I need a break from self-improvement so I can manage my mental health."

If you think talking to them will be hard, you can show them what I wrote here. Maybe it will help them understand.

Concluding thoughts

It can be hard to be an autistic person who isn't independent. People will push you to keep improving and improving, even if it doesn't feel realistic or healthy. Non-disabled adults don't usually get pressured this way, and it can feel unfair.

You deserve a say in your own goals. You deserve the chance to say whether you're ready to set goals or whether you need to focus on what you already have "on your plate" right now.

And, ironically, advocating for your needs is an independence skill too! And it's one of the most important ones. Maybe it's time to take a break from the too-hard skills and work on this skill instead? :)

You deserve support. While I don't know your age or your circumstances, you may never be fully independent. You don't need to become the impossible. You need to plan for a future where you can get the help you need and deserve.

<3

[five-thousand-loaves-of-bread]

when people (esp lower support needs ppl) talk about how autism “spectrum” as in like rainbow color instead of light to dark or green to red single gradient mild to severe n about spiky profile n like. always make me wince.

“ehhhh— no—ye—but no—but also yes—”

n when have this reaction people expect condense that into binary “yes” “no”, n in this case “must” be say “no”

but that not… really right

what be call “spiky profile” exist, right? like pretty common in online autism community, for example, someone struggle with like, put thought into word lot more than what most be expect for someone verbal & high vocab & bubbly & stuff.

so if ask that person rate struggles 1-5, 5 be most difficult 1 be least difficult, may rate like “word communication” (can’t think of word rn) as 5, because they exist in nondisabled neurotypical world so keep be compare to nondisabled NT people n so feel extreme out of place. n let’s say they not struggle with hyper & hyposensitivity as much, so rate as 2.

but what 5 mean n what 2 mean? is struggle be define as how distressed by it? or by more objective amount skill you have in that area?

another autistic person minimally verbal, in both speech & language can only use like, 10 words on regular basis. n at best can only combine 2 words together. but they have very violent n distressing meltdowns so they n caregivers rate meltdown n aggression as 5 n look at language, n go, well struggle lots, but like, meltdown most distressing symptom, n speech language not compare, n their circle of people is people at self contained moderate/severe special education classroom where so many kids fully nonverbal, so hey at least can speak n language some right? so rate it 4.

is first person’s 5 more struggle than second person’s 4 then? after all, 5 greater than 4, right? (rhetorical question)

do outside people get bump first person’s 5 down to 2 or 1 then? even tho they very distress by it in world where expect 0?

what 5 mean? what 2 mean?

.

another example. autistic person diagnose “severe” “profound”

they do not speak by mouth, n also have extreme struggle in use language, so both speech language rate 5. they have big n small routine from which bowl use which brand of specific food eat at what time sit where to big day routines, and meltdown whenever any “smallest” change happen, so that also be 5. they extremely sensitive to touch to sound to clothes to texture to point scream when touch n have feeding tube bc not eat enough malnutrition bc food texture n only have like 3 clothes wear n refuse throw them away will meltdown if do bc change, so that also be 5. they not look at people (not to mention eye contact) not respond to name when called no joint attention, so 5 on reciprocity. can go on n on, but u get point.

n when say they scream n meltdown do mean that n they broken walls n object n furniture n bones n bled n had to ER n had permanent body damage from meltdowns. so also 5.

if put on that rainbow circle chart, would be whole circle.

is not gotcha. these people exist. it not bad negative insult say they exist.

n maybe still too “extreme” of example, but there even more people who maybe few of these, 1, 2, 3, be rate lower number, but majority still be rate 5.

maybe their “better skill” still rate at 4. or maybe even still enough to be 5 - just slightly less intense 5.

know people like this.

in this rainbow spectrum circle wheel. if we go by “amount skill you have/not have in compare to all autistic people”. not all, but many people diagnose “severe” “profound” “low functioning” “high support needs” would have majority 4-5s.

.

want be clear that not saying like, spiky profile false. wrong. not exist. or that linear better, more accurate, that we should go back to it.

n also not say rainbow spectrum circle wheel not have place in high support needs autistic people lives. or that all high support needs autistic people lall struggle with things in different parts (speech, language, cues, restricted interest, repetitive behaviors, etc) all same amount all extremely.

it’s just that. you all don’t understand high support needs people, or people diagnose level 3, “severe” “profound” “low functioning.” n create new way measure autism not going make that magically better or hide that fact.

rainbow spectrum circle wheel can be better system. except a lot you all using it to erase for lack better word, “severity” (or “sheer amount”?) of high support needs struggles, you use that wheel not to talk about how all autism dynamic. you actually use that to erase autism dynamic different. you use it to make us all same. you use it to try get close to us in not accurate way.

autism dynamic different only allowed if it for you.

but whenever we say hey we also pretty different you get mad because that invalidating your struggles, or whatever.

all autistic people similar but this not it.

rainbow circle wheel have use n purpose n improve but this not it.

[musashi]

Pffff you sure do manage to piss a lot of people off, and not know why or how. Perhaps you should look inward.

i'd love to look inward, unfortunately these people i piss off never actually give me anything to work with. they'll say like "wendy, you eat babies" and then i say "can i have an example of when you saw me eat a baby" and then they block and ghost me and i go to my friends like "hey, did you ever see me eating babies? i'm trying to figure this out" and they all unanimously are like "uh no we never saw anything like that??? you did look at a baby once, maybe someone misunderstood???" and then five years pass and the person mad at me for eating babies leaves a long apology in my inbox and i connect with them through DMs and say "i'm just still confused. can you explain the thing where you said i ate babies? like do you remember what made you say that?" and without fail every time they reply "i don't know man, it just seemed right to say at the time."

i'm actually quite interested in bettering myself, and a great deal of my vent posts on here DO end with "i just don't understand" because of that desire. but i think a lot of people really do just forget that i am autistic and a huge part of autism is needing very clear examples of situations/behaviour/whatever. asking lots of questions, receiving lots of clarification, etc. with how mean and quick to abandon people have gotten on the internet lately, no one wants to give me that actionable feedback, or sit with me and help me understand what i might have done wrong/inelegantly. most of them just get angry, take my "maybe we should sit on this and come back to it later?" as an insult, and block me without answer.

currently, the person maligning me fully believes that i'm not "disabled" enough, claims i am "low support," and quite literally said "all [wendy's] symptoms [of disability] improve their life." i think this is very telling of a larger picture--people see how well i hide my cracks, how i boast my function, and how happy i am despite being disabled and file me away in their head as an arrogant neurotypical who is a little bit quirky.

but i would like to remind you, anon, that i am autistic. i am disabled. my social functioning is atypical. my way of understanding myself, my actions, and how those all mesh with the people i share a space with is atypical. "look inward" is great advice, and though I think you were trying to be mean, i welcome it with open arms! however, "look inward" only helps when i have additional help to guide me toward what exactly inward i am looking for. so, in this case, it is a little misguided.

if anyone who KNOWS ME PERSONALLY NOT ON TUMBLR who hates my fucking guts would like to give me some examples of how i act/talk/exist and why it makes them want to set a library on fire i am always, at any given moment, eagerly awaiting that feedback. but currently, the feedback is "none at all." every single person who has had a problem with me for the last half-decade of my life has simply blown up on me over things i did not do/intend/understand, or hardblocked me without a conversation and left me clueless as to what i did wrong.

until someone (friend or foe) is willing to actually communicate with me instead of being a sniveling coward, i will never know where inward to look. them's the breaks!

[ammonite-collective]

Autism terminology

Person with autism vs autistic person

I know that professionals dealing with disabled populations are taught directly to use person first-language regardless of what the person they’re working with prefers. Person first language is the idea of stating that the person with a disability is a PERSON and their disability is secondary.

I have seen a significant portion of the autistic community, including myself, preferring identity first terminology. My reasoning is that my autism cannot be separated from me to be to end up with the same person. My autism is very much a part of me and it shapes my experiences so I would not be who I am now without my autism. That’s not a good or bad thing. It is simply a neutral fact.

Person first language also includes using “person with a disability” as opposed to “disabled person.” The idea seems to be that the disability doesn’t define a person but a lot of the time it does and it’s important to say that. I am also physically disabled and chronically ill and being disabled has impacted my life so immensely. It is a daily occurrence that I go through. In addition, disabled is not a dirty word. It is okay to say that a disabled person is disabled. They aren’t “differently abled.” I don’t have special abilities, I literally just can’t do some things.

Honestly, I think it’s probably the best idea to just ask someone how they prefer to be talked about and the words they use to describe themselves. Some people prefer person first language to describe them and that’s okay too. Please just talk to disabled people instead of just assuming or talking over us.

Nonspeaking/Nonverbal

I unfortunately see a lot of people using “going nonverbal” to describe intense overstimulation that causes a person not to be able to speak for a period of time. Based on interactions with nonverbal people, this trivializes their experiences. Being nonverbal is a permanent of not being able to talk at all or talking very very little. You cannot become nonverbal for an hour. Your experiences matter but you don’t need to take words from people who need them to describe their struggles and experiences. Nonverbal people have different support needs to speaking people. Like they may need/use an AAC device, use sign language. They also have different struggles. People tend to talk over nonverbal people as if they are not sentient human beings. Their communication attempts can be ignored and they often are put through intense and traumatic ABA therapy to force them to speak and act more “normal” rather than just listening to their other forms of communication.

Alternative terms to use:

• verbal shutdown- inability to speak due to overstimulation

• temporary speech loss episodes- self explanatory

• selective mutism- anxiety disorder where a person cannot speak in specific situations but can speak in others

Is autism a disability?

Short answer, yes.

For most autistic people, it is a disability but for some low support needs people, they don’t consider it to be for themselves. Both views are perfectly fine. However, if you deem it to not be a disability for yourself, please do not determine that for other people. If you were to do that, you’d be wrong. The presence of a disability is generally required in order to receive care that many autistic people require to live their daily life. There are also a significant portion of disabled people in general that cannot access accommodations or support regardless of need. If you do not need support to succeed, you are privileged. You are also not the majority and you need to keep other people with higher support needs in mind when you make blanket statements. Or better yet, don’t make blanket statements at all.

High/Low functioning labels

These are not accurate ways to describe autistic people. The correct terms would be high/low support needs. Functioning labels are harmful to low support needs folks because we are unable to access support we need and they’re harmful to high support needs folks because their thoughts are disregarded with the assumption they don’t have important insights and experiences.

Asperger’s/aspie

I do not support the use of aspie/Aspergers to describe even oneself. The reason being that Hans Asperger was a Nazi. The term was used to determine which autistic people got to live during the Holocaust. Usually, I’m all for people determining which words vibe best with them but this word reeks of supremacy. It’s the same concept as saying you’re “one of the good ones.” I don’t support acting like this in any community. We all have the same disorder and it’s not cool to separate yourself from those you view as lesser, even if that thought is subconscious.

ABA

Applied behavioral analysis therapy is a way that neurotypicals try to force their societal standards onto autistic people, mainly high support needs folks. It is generally regarded to be abusive because their whole philosophy is to “break” a person down and “rebuild” them again in the way the therapist wants them to act. If your thought process surrounding disabled people involves breaking them, you are not safe. Autistic people are whole people and the opinions of allistic (not autistic) people do not matter on that.

Autism Speaks and the puzzle piece/Light it up Blue

A lot of well meaning allistic people donate and support Autism Speaks. I understand the appeal if you are uneducated on the harm they have caused. Their overall goal is to cure autism. A lot of “autism moms” (mothers of autistic children that make their child’s autism their whole personality) say that they hate the autism but love their child. The autism cannot be separated from the autistic person. Autism is a neurotype. It influences the way autistic people interact with and perceive the world around them. An autistic person without their autism would have entirely different experiences and mannerisms. They would be an entirely different person. That’s why autistic activists fight against the search for a cure. My autism does cause immense difficulties in my life but I don’t want to be allistic. I would not be me as an allistic person. If there is a cure, I don’t want it. We should be spending resources helping autistic people in the moment and meeting them where they are instead of trying to change them. Searching for a cure when we are actively in need of support is disrespectful at the very least.

The puzzle piece is incredibly offensive to most autistic people. The whole idea behind it is that autistic people are not whole. That we need our “missing piece” to be whole human beings. That we are somehow lacking. I hope I don’t have to explain why that sucks.

Light it up blue isn’t exactly bad on its own but it comes with the whole of autism speaks. It also symbolizes that autism was a “boy’s disorder” for a very long time.

Awareness and Acceptance

While I believe that autism awareness is important, it can only do so much. Plus, most people already know about autism, and they’re terrified of it. Acceptance is so much more important. You may be aware of autism but unless you accept autistic people with open arms, you are not safe to us. You must accept us as we are and let us breathe in your presence.

Final thoughts and a call in

I am only one autistic person. I do not have all the insight of every autistic person. I tried my best to cover many of the things I believe are important but I definitely couldn’t cover everything. This already took me a week to research and write because I’m disabled and struggle with projects like this. If you have more to share, please reblog with your own experiences and stuff you wish people knew. If I got something wrong, tell me (kindly please). I hope we can work together to make the community and society as a whole safer and more welcoming!

[thousandyearphantombunker]

I am so tired of high functioning fully verbal non cognitively impaired able to mask autistics being the ones who dictate how we talk about autism- I hear shit like high functioning autism= high masking and low functioning autism= no masking - i get it when you have an invisible disability its like no one ever believes you when your struggling and your told your being lazy or don't qualify for things like disability aids you may need - its a shitty sometimes traumatic experience but low functioning isn't 'low masking' it is needing to be leashed so you don't run into traffic and get hit by a car, its needing to use diapers and take medication to make yourself less violent, it is 'learning sign is impossible for them and an aac device isn't gonna be useful here either' its your parents having to rely on the good will of others and hope they won't be abusive dick bags to your child, it's getting treated like shit by the police because they think your odd behavior means your on drugs, it's being unable to go online and rant about the horrible shit you go through cause your too impaired to even understand it- low functioning autistics have it so much harder and my heart goes out to them- so much ridicule, judgement, abuse and just being so misunderstood is miserable being reliant on others like that is miserable- acting like being low functioning is just being bad at masking and acting like people who are low functioning get treated so well and are taken care of by angels is freaking dumb as fuck- just because your low functioning doesn't mean you get support (and if any of the stuff I listed above is a good indication they need it even more)

Low functioning isn't 'low masking' its your goddamned disability impacting you more severely, and again I get it sometimes your told your super high functioning even though your actually not that high functioning and your approaching burn out and the reason no one notices because you cant stop masking- it's horrible but saying low functioning= not masking, is dumb cause it's so untrue it's being more severely disabled

Also autism burnout isn't just limited to people who can mask/are former gifted children. Masking for too long isn't the only source of Autism burnout- autism burnout can happen to people who can't mask and aren't straight A students. Autism burnout is caused by not having your needs met (having your accomodations ignored, being unable to communicate etc) Autism burnout can happen to anyone with autism and again masking isn't the only thing that causes burn out,

idk I feel bad that you guys couldn't take off your masks, that you couldn't stop repressing your autistic traits, that your needs didn't get met because no one noticed or cared or maybe they straight up bullied you when your needs came up- but why do so many of you think low functioning people are more 'privileged' "oh well they had more money to get a diagnosis and their parents cared about them more to get them a diagnosis and they have more resources!" Okay first of all bold of you to assume any of that shit - lots of low functioning people struggle with poverty, have shitty parents and the idea that they get more resources/better care is laughable second of all even if they have good parents and the resources they get aren't bad or nonexistent and they have more money to get the help they need- so fucking what? Is it really a privilege? Is it really a privilege to be stuck with the IQ of an 8 year old who needs to live in a special home after your parents die having to use sanitary devices and needing others to handle basic tasks for you being carted around by different caretakers, changing case managers, being that helpless? Is it a fucking privilege- i personally think that's kind of scary as shit.

I'm high functioning or low support needs or level one whatever label you like (I think levels have been the closest to working but I used functioning labels for this post cause it was easier to articulate) and I am aware I am not the authority on the autism community as whole- especially the low functioning members of our community but jesus Christ i will call other high functioning people out i usually dont play that misery poker, victim shit but it seems to be the only thing some people listen to

I've known a few low functioning autistic people in my life and I love them and it hurts knowing how they are demonized and abused and how our community shuns them due to shame and thinking that if people see this side of autism they'll take away our rights and I hear them talk about how 'privileged' they are to have such sevre symptoms because getting a diagnosis *definitely means that your super rich because you can afford a diagnosis and care takers, and you get amazing care and have good parents!* (Sarcasm a lot of low functioning people have shit parents, are poor and on top of that being disabled is expensive as shit oh and the idea that people are more understanding and kind toward visibly disabled people is again fucking stupid) And what a blight they are on our community and prevent us from getting full rights... I am so done with that shit. Like the reason we mask is to avoid the danger that comes from being visibly disabled and yet so many of you are jealous of visibly autistic people? And you can't fathom that they get shit treatment a lot of the time? Fucking hell. I wanna hear from more visibly disabled people, people with disabilities that have embarrassing symptoms, people with learning disabilities and low iqs and slower processing, from people who are severely impacted and need people to take care of them, I want to hear about autism from people who aren't burnt out gifted kids or cutesy tik tokers with cute special interests/non violent 'aesthetic' stims (those people should still talk because they are also important) but like so are the intellectually disabled ones? Idk I think we need to hear them to, we need to actively include them in our conversations about autism. we kept screaming at the top of our lungs 'no talking about us without us' yet we don't follow our own advice

[autisticvelo]

🧡 VELO

• 25 years old.

• it / its pronouns.

• white swede.

• professionally diagnosed level 2 autism.

• moderate support needs.

• no / low masking.

• visibly autistic + visibly disabled.

• demi-verbal plus regularly complete verbal shutdown, part time AAC user.

• trans & queer.

• physically disabled.

• rollator & wheelchair user.

• DID system.

• i also have ADHD combined type and dyscalculia.

🧡 SPECIAL INTERESTS

> current ;

• supernatural (the tv show) 🪽

• medicine & healthcare 🏥🩺

• plushies 🧸

> inactive ;

• bones (the tv show) 🦴

• commercial aviation ✈️

🧡 BYF

• i support autism levels and support needs labels.

• non verbal, semi verbal and nonspeaking are long lasting / permanent things, not episodic; use verbal shutdown or other more appropriate labels if you have episodes of not being able to speak.

• uplifting level 2 and level 3 + msn & hsn autistics is important and doing so does not invalidate level 1 + lsn autistics. this also goes for uplifting people with intellectual disability too.

• i support educated self diagnosis.

• people with intellectual disability have repeatedly stated that the r-slur is not reclaimable, and that they do not want to see it used, “reclaimed” or not. listen to them.

• i will absolutely try to put IDs on any images i post or reblog, my memory is really bad so i might forget sometimes (im happy to be reminded).

• being a system affects how i talk / type / act, so you might see different parts having different opinions or writing patterns etc. i also go between using i / me & we / us randomly, it depends on which part is fronting & what they prefer. we also have different opinions on non traumagenic systems but have decided any system can interact with this blog as its focus is on autism, not systems. it is also always safe to refer to us by singular it / its or plural they / them pronouns, as those are our collective pronouns.

• i have a hard time understanding a lot of things and might not understand politics as an example, but i am always happy to at least try to learn, i just need more explanations.

• i have autism (duh. autism blog) and two personality disorders that all make me struggle with understanding empathy and showing sympathy. i am not ‘un-caring’ on purpose, i can’t control it. i always try to be mindful though, so if i come off as mean or rude, please let me know because it’s not guaranteed i noticed or understood i was mean or rude. please assume i am acting in good faith, but i am always open to being told that i have done something wrong.

• if i’ve said something wrong or offensive, please let me know so i can learn to do better & get better understanding because not always guaranteed i understand issue, others experience or what was upsetting.

🧡 PSA

• link to the picrew in my profile picture

• if you need anything i’ve written simplified, please let me know & i will do my best to reformulate myself.

• sometimes i write “properly” but it takes a long time and a lot of energy, so you will often see me writing shorter sentences with “bad” grammar, please don’t comment on how i type, i am aware of it and i am already frustrated about not being able to communicate properly all the time so i don’t need people pointing it out.

• likes & follows comes from @strange-autism , that is my main blog.