Tumgik
#high support needs disabled
clownrecess · 1 year
Text
(Tw for ableism, meltdowns, elopement, etc.)
Hi, I am currently in an argument with someone in a comment section because they are saying that autism is not a disability. So I decided that I want to make a post about it, and thoroughly talk about it.
If you do not know me, hello. I am an autistic primarily nonspeaking teenager with mid-high support needs. I'm disabled.
I am honestly very tired of low support needs autistics saying that autism isnt disabling, because it very much is for me and a lot of other people. Just because your experience isnt the same as ours, doesn't cancel out our experience.
I will never live alone. I am a teenager who can not make food, or blow dry his own hair. My ability to use oral speech varies a lot, and when I can use it, I usually end up having severe meltdowns from it. I am in special ed. It hurts when I brush my hair. I have put myself in danger by running into the street. My emotions are extremely strong, so I often seem rude when I'm not, I just can't control the fact that when I feel something it's so incredibly strong that it hurts. I have little to no internal sensation. I could not bathe myself until I was 9 or ten, and even now I will not just go and take a shower myself; I need someone to tell me to, and I need a visual schedule to help me do so. And many more things.
The person's response was to then say that is not because I am autistic, that is because of the way mankind is. That my autism is not disabling, society is. And whilst I do agree that society is horrible to disabled people, and it would be much much easier to exist as a disabled person in this world if society was different, that doesn't change the fact that my autism is disabling. Me being nonspeaking is not because of society. Me being unable to care for myself is not because of society. Most of the things on that list are not because of society!
Just because low support needs people exist, does absolutely not give them the right to speak over us, and tell us what our experiences are or are not.
My autism is disabling. Listen to me. Listen to me. My life has been severely impacted because I am disabled. You can not sit there and tell me that me being unable to care for myself, and unable to live alone ever, isn't disabling, and that it's because of society.
I am disabled. Stop speaking over high support needs autistics.
3K notes · View notes
lightning-system · 2 months
Text
As a medium/lower support needs autistic who works with young higher support needs autistic:
We all matter. We all have the same diagnosis. We all deserve to be treated with dignity and respect.
But we are not the same.
I can mask and might be seen as 'odd' or 'weird' in public. The students I work with are seen as 'dangerous' and 'practically little kids'.
I can go to university and work with accommodations. The students I work with likely will never live independently and a few might find jobs that support them but still pay them less than an abled worker.
I have full control of my finances. The students I work with aren't allowed to make independent financial decisions, even if capable.
If I say 'no,' I'm making a choice. The students I work with can't say 'no' without being labeled as defiant and difficult.
I can feed myself, bathe myself, and take care of myself with extreme challenges. The students I work with are unable to take care of themselves without high levels of support/one on one support.
I had an IEP in high school but was mainstreamed in classes. The students I work with take separate classes and some rarely get to interact with their abled peers.
Our experiences are fundamentally different. Higher support needs autistics will experience a specific type of ableism I never will, and can never fully understand.
Lower support needs autistics need to stop saying we understand what higher support needs autistics are going through and then present autism as only being disabling because of society/lack of acceptance because that is dangerous. We need to stop saying every autistic person is capable of everything if given the right support because that leaves out huge parts of our community who will never be able to do certain things, regardless of support.
We are worthy of existence regardless of our abilities.
Autism is a spectrum. It is not the same for every autistic person. Autism acceptance and advocacy has to come with accepting, acknowledging, and listening to our higher support needs peers.
8K notes · View notes
Text
"Disabled people should be allowed to be as independent as we can be" and "disabled people should not be pressured to be hyper-independent in order to not wind up in nursing homes against our will" are two thoughts that can, and should, exist at the same time.
6K notes · View notes
radiostatic166 · 4 months
Text
Please stop infantlizing autistic people
Stop being weirded out when we cuss. Stop being weirded out when we talk about nsfw topics. Stop being weirded out when we are semiverbal or nonverbal.
We can smoke too, we can drink, vape, and cuss and do anything normal people can do. We can have (concented) sexual relationships. We can kiss people. We can have kinks. We can like BDSM or have fetishes. We are not innocent little kids.
Just because we have a disability doesn't mean we aren't people.
Just because we sometimes need to live with someone else doesn't mean we aren't people.
Just because we don't pick up on social clues doesn't mean we aren't people.
STOP INFANTILIZING US. STOP CALLING US INNOCENT. STOP THINKING YOU NEED TO PROTECT US. WE ARE REGULAR PEOPLE TOO.
7K notes · View notes
meowtismz · 5 months
Text
please please please STOP weird out when autistics specially nonverbal semiverbal autistics cuss talk about nsfw topics etc
deserve talk about topics if old enough like any other peers
autistic cuss have sexual relationship (with consent) consume alcohol date etc etc etc
STOP INFANTILIZING US we humans too
5K notes · View notes
spooksforsammy · 6 months
Text
Everyone love autism until the person needs someone to remind them or help do things like bathe, change clothes, and use the bathroom.
Everyone love autism until they need to be told what to do in social interactions and still can’t do it correctly.
Everyone love autism until they can’t communicate in the way you deem appropriate. Until they need other ways to communicate because they can’t verbally do it. They love autism until they can’t communicate even if they have aac. until they have NO (no) ways to communicate because they don’t understand they can.
Everyone loves autism until they can’t sit down and stop moving. Until they grunt or moan or make random sounds. Love until moves around and not even realize that their moving.
Everyone loves the idea of autism until it’s not level one low support needs. And not fair that high support needs, medium support needs, level 3, level 2 autistics get so much hate for things can’t help. They should still be loved!
3K notes · View notes
cryptid-aac · 5 months
Text
Love post for ppl who type " weird "
Love you ppl who type " weird " because use AAC to type (hi, sometimes)!!
Love you ppl who type " weird" because have language disorder (hi)!!
Love you ppl who type " weird " because have I/DD!!
Love you ppl who type " weird " because have severe autism/higher support needs autism/Level 3 autism/however you identify (hi)!!
Love you ppl who type " weird " because English not your native language!!
Love you ppl who type " weird" because rushing thoughts (hi)!!
Love you ppl who type " weird " because blind!!
Love you ppl who type " weird " because that's how brain thinks!!
Love you ppl who type " weird " just because!!
Love you ppl who type " weird " because semiverbal (hi)!!
Love you ppl who type " weird " because nonverbal!!
Love you ppl who type " weird " for any reason not mentioned or no reason or reason that not know of!!
2K notes · View notes
zebulontheplanet · 5 months
Text
I hate when people say that autism doesn’t have a look. Yes, I understand that many low support needs/high masking/level 1s constantly get fakeclaimed because people say they don’t “look” autistic. However, they(low support needs/high masking individuals) usually follow this up by saying “autism doesn’t have a look. Stop saying that”
I want people to understand that to a lot of higher support needs people, we DO look autistic. We do stim publicly. We do grunt, laugh, make noises/vocal stim loudly. We do carry AAC devices. We do look autistic. People can point us out. People can know just from looking at us for a few seconds. That’s the issue I have.
Many of us look developmentally disabled. We look different. It’s frustrating to see time and time again that autism doesn’t have a look when I get singled out in public just for simply existing. It’s just exhausting.
Please in the future rephrase your posts. We are on the internet. We are reading your posts. We’re on tumblr. We’re on Reddit. We’re on Facebook and more. And even if we aren’t, you’re still disregarding those of us who are visibly autistic.
3K notes · View notes
twisted-rat-king · 1 year
Text
so sick of seeing "their poor parents" in regards to someone who is delusional, psychotic, or otherwise "not normal." any time the topic comes up, someone's there to drop that steaming pile of shit. i promise you, the caretakers aren't suffering half as much as the person they're caring for. but nobody talks about that part.
4K notes · View notes
Text
Currently waiting for people to realise that yes, the autistic teens, kids, adults and elders who are always swarmed by aids, cannot speak, lash out, have limited speech, act “dumb”, run away into dangerous places (eg. Roads, pools ect.) when overwhelmed, are similar to the autistic stereotype or in general don’t act in a “civilised manner”
Have access to the internet
They are on tumblr
We are on tumblr
And we don’t appreciate being your punching bag, being excluded from conversations about accessibility, or used as a tool by high functioning autistics who want to say “oh look at me I’m not like the autistics who bite people or make weird sounds in public or need support, I’m just unique and have fun interests.”
We are real people and we are smarter then you think.
Edit: thanks to the people who pointed out that smart wasn’t the right word! So I’m going to add this: the opinions of me, a low functioning autistic who has the privilege to be able to write coherently and communicate my opinions and views in two different languages, holds the exact same weight as someone who cannot do any of those things and in fact sometimes it’s their opinion and views that matter more. The opinion of “smart” autistics matters just as much as the opinion of “non smart” autistics and people you would consider dumb. Lower functioning autistics who are not conventionally or, at all, “smart” are just as human, important and valuable and deserve to have their opinions taken into consideration just as much as I do writing this. You don’t loose your value as a human or as a disabled person when you aren’t smart.
3K notes · View notes
flowercrowncrip · 2 months
Text
Possibly an unpopular perspective, but sometimes I feel like parents of children with similar or higher support needs to myself who campaign for things like changing places toilets, affordable health and social care, better quality care homes, and better access and funding for education understand a great deal of my life better than people who are disabled but never give a thought about those with high support needs.
Someone who knows what it's like to plan their entire life around the just over 2000 registered changing places toilets in the U K (compared to over 43,000 towns, cities, and villages) so that their child can use the toilet with dignity understands that part of my life better than the disabled people who have never even thought about the lives of people who can't use standard accessible bathrooms.
People who go out in public with their wheelchair using child and see the looks they get, hear the ableist comments and experience how much of society wheelchair users are cut out of understand that part of my life better than the disabled people who told me being a visibly disabled full-time wheelchair user makes me "privileged" compared to other disabled people.
I know that there are problems with some nondisabled people who are close to a disabled person talking over disabled people's first-hand experience, but I also think that there are some disabled people who could do with actually listening to severely disabled people and our families rather than assuming that the experiences of people with lower support needs are universal
998 notes · View notes
clownrecess · 10 months
Text
I've seen a lot of level one autistics say things like "Have an urge to run? Hell yeah! Elope, bitch! Freedom!". This frustrates me, so I want to talk about elopement, and what it actually is and feels like for me.
I am someone who elopes when in severe distress. It isnt that I want freedom, or even that I want to leave. Its that my body takes control of me, and I involuntarily run anywhere I can to get out. I've run out of my house before, I've run into the middle of the street, etc. It isnt fun. It isnt freeing. It's scary, it's dangerous, and it feels like I am being controlled by my own body because I have no say in it. It just happens, and suddenly I am sprinting out my front door.
I've also seen level one autistics be upset with parents for having those "child leashes" on their autistic kids, saying how they "arent dogs". I think more people need to understand that these are SAFETY TOOLS and are often times NECESSARY for people who elope frequently. Stop shaming parents for having these leash backpacks.
2K notes · View notes
the-rest-is-silenc3 · 3 months
Text
shout out to the people who DO look autistic
to the people who have different facial features from autism or conditions that often occur with autism
to the people who need padded equipment, gait trainers, or other highly noticeable aids
to the people who are ignored in favor of talking to their parents/guardians/carers
to the people who have been told they shouldn’t be seen in public because of their autism
to the people who are told they don’t exist by low support needs autistics
there is a place for you in the autistic community <3 [heart]
720 notes · View notes
chronicallycouchbound · 7 months
Text
I feel like people often don’t talk about the experiences of disabled people who have caretakers because so much of the conversation is about us—not including us.
I receive in home care for 30 hours a week (+ 4 hours/week for respite). This is paid for by Medicaid (state insurance). Outside of paid hours, my primary caretakers care for me unpaid and assist me most of the time. I’m very rarely left alone due to my high support needs. Often, when I am left alone, I am completely bedridden or at minimum housebound. I have frequent emergency life threatening health problems, falls, and serious injuries even with support in place, and these things significantly increase when I’m on my own.
I’m extremely lucky that my paid caretakers are my partner, my sister (the only family member I have regular contact with, I’m estranged from the rest of my immediate family and most of my extended family) and my best friend.
I used to have agency staffing which was horrible for me and borderline traumatic. At several points, before doing the self directed care option (which allows me to choose my own staff, hire and train them myself and dictate hours for them), I opted to not have any staffing. I was regularly in the emergency room. I can’t drive, so I was having to walk and if I was lucky enough to be able to take the bus on occasion or get a ride from a Facebook acquaintance, they were few and far in between. I don’t have family support, and even my sister who is supportive wasn’t living in the state at the time and doesn’t have a car most of the time.
And before I could even choose which staffing option, even though medically it had been deemed essential for me to have in home care, even though my insurance covered it, I had to wait several years (I was 18 when I was approved) until I was 21 to qualify to start. The reason why: I was legally an “adult disabled child” because of my high support needs (which is funny because I STILL don’t have SSI at age 24) and thus legally unable to consent to my own care plan. I needed a blood relative to consent, and that same blood relative (who had to have proof of such!) couldn’t care for me. At the time, my sister was the only person who could’ve been my caregiver and also she is the only verifiable blood relative I have contact with for safety reasons, and my only relative on this side of the USA.
The first business day after my 21st birthday I immediately got things set up to get in home care.
Tumblr media
This is out of date, I get assistance with more than just these highlighted ADL (activities of daily living) tasks now.
In short: my day-to-day life is entirely dependent on others.
And there’s power imbalances that exist between me and my caregivers, even with my current caregivers being amazing and anti-ableist. They will always exist. We talk about the power dynamics of me being dependent on them for my survival, and how heavy that weight can be for each of us.
Having caregivers often means that accessibility is extra difficult— I’ve been told straight up multiple times that I can’t have assistance from my caregivers to help me change in a changing room when we’re out shopping. That they can’t go into the bathroom with me, that they can’t help me get un/dressed during appointments, that they can’t come into spaces with me.
I’ve been denied access to psychiatric care because I can’t do my daily living tasks (ADLs- the highlighted items) independently. And when I’m in a hospital or emergency room, I can’t have my in home workers be paid to care for me, there’s an expectation that the nursing staff at the hospital will do it. Even though my caregivers were specifically trained to learn my body and needs for weeks and have been working with me for years. I have severe cPTSD and showering in front of a stranger is something I cannot do. I would rather fall or faint or get injured or just not shower than deal with that. But I’m expected to just let anyone have access to my body just because I’m physically disabled and need support.
When I faint/fall/get injured/have life threatening health issues arise while I’m not clothed, or when I’m otherwise vulnerable, I’m supposed to let strangers just touch me however they want to. I have to show them my chest (for my cardiac care) and let them poke and examine me. I can’t object without losing access to vital care.
I have agency. I have rights. I have autonomy. I deserve to be able to exercise these things.
1K notes · View notes
p1xelpc · 3 months
Text
Why Life is a Tragedy
[ Plain text: Why Life is a Tragedy ]
My daily routine is usually very empty. Most days it goes like this:
My mother brings me my breakfast at 8. That consists of yogurt with berries and granola, protein shake, and a cup of strawberry milk (a small cup, so I don’t upset my stomach).
She says good morning and helps me rearrange myself if I’m awake. If I’m not, she goes to her office across the hall.
I take about 15 minutes to actually work up the energy to eat and take my meds. I play Wordle while I wait.
If I feel up to it, I go to the bathroom, change my diaper, use hand sanitizer, and wash my face. Some days I may brush my teeth with a toothbrush and water. Those are rare days.
After I finish, I stay in my bathroom chair for 5-10 minutes while I work up the energy to get back to bed.
When I do get back to bed, I decide what activities I will do that day.
If I feel up to it, I set up my activities around my legs so that I can do it when I’m ready. If I don’t, I ask mama if she can set up when she gets the chance.
I play on my phone and socialize on Tumblr and Discord. I try to do my activity.
I do that until lunch. Taking breaks every 5-30 minutes depending on the activity.
Lunch is around 12. It has been hard boiled egg whites, cucumber slices, and a small cheese recently. Soon it may change to a prepackaged lunch with crackers, ham, cheese, and mini cookies. I get another (small) cup of something other than water. 
After I eat, I decide what activity I will do for the rest of the day and try to set it up. I usually do not succeed and need mama to come help.
I play on my phone and socialize on Tumblr and Discord. I try to do my activity.
I do that until mama finishes work. She comes in to take my dirty dishes and she asks what I want for dinner. I want pasta please. She goes to make pasta.
I continue my activity.
She brings me my pasta and another (small) cup of something other than water.
I eat.
I do not do an activity. I may watch TV. I play on my phone and socialize on Tumblr and Discord.
At 8:00 mama comes to help me to the bathroom. After I finish, she comes in to help me wash my hands, wash my face, brush my teeth, and put on my Testosterone gel. We talk the whole time.
I go to bed. Mama helps get me situated. She helps me take my meds.
After mama closes the curtain, I play on my phone until around 10.
I go to sleep.
On weekends my days are different. Mama has to help me shower at least once (usually Sunday). That takes about 1-2 hours total. I need a lot of help.
Some days I have doctor appointments. I take around 45 minutes to get ready. It usually takes 15 minutes to get to the office. The appointments usually last an hour, not including wait time. After I get home, I lay in bed for the rest of the day and do not use the bathroom that night (I am too tired).
I cannot leave the house most days. There are many days I can barely leave my bed. Some days I cannot leave my bed at all. My usual pain level is at minimum a 6. I cannot speak, only make funny sounds. I require at least 2 forearm crutches to walk safely. I usually need a wheelchair to move. I cannot leave the house without my ear defenders on. I take a fully packed backpack everywhere I go. I need support to sit up and to stay sitting.
My hobbies include coloring, playing video games, making disability aid designs, writing, reading, and baking. My favorite animal is a Triceratops, though I only like the cartoonish designs. I like fluffy animals. I love Bluey. I enjoy learning about disability related topics. I read children’s novels because they are what I understand. I love going to the zoo. I love going to the library. I enjoy warm weather with light wind. I enjoy dressing up and doing makeup. I love ice cream cake. On days with nice weather and good health, I like to go outside and just sit. 
I have 2 stuffed animals that I take everywhere (Jameson and Gerald). I have 1 that I take lots of places (Fred). I have 2 that usually stay on my bed, but travel if I’ll be gone for a while (Kougie and Melon). My favorite colors are yellow, pink, and green (no particular order). I use a light Bluey blanket, a light dino blanket, and a weighted blanket every night. I use at least Little Pillow every night (it has smiley faces). I have a cat shaped pillow for my neck. 
Did you decide if my life is worth living? Do you need more information? Do you think I’m tragic? Do you need to give your sympathy to my carer as if I don’t exist? Do you know my sense of humor? Do you know why I am loved? Do you know my limits? Do you know what I am capable of? Do you know what brings me joy? Do you know if I’m a person? Do you know my identity? Do you know who I am?
Do you know if I am happy? 
Do you care? 
This inspired by Unspeakable Conversations by Harriet McBride Johnson
632 notes · View notes
meowtismz · 5 months
Text
Remember that if talk or type weird all ok
Remember that if not low support need all ok
Remember that if not level 1 autism all ok
Remember that if nonverbal or semiverbal all ok
Remember that if cognitive function low all ok
Remember thay if dysfunctional all ok
Remember that if "more debilitating autism" all ok
Remember that disability ALWAYS debilitate one thing or another, if have "less accepted" autism still valid and deserving of love respect help
4K notes · View notes