#medium support needs

[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%).

#autism #actually autistic #actuallyautistic #level 1 autism #level 2 autism #level 3 autism #low support needs #moderate support needs #medium support needs #high support needs

[lightning-system]

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.

#disabled #disability #actually autistic #autism #low support needs #medium support needs #high support needs #autistic pride #advocacy #acceptance #lightning rambles #important

[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

[spectrumgarden]

I know I'm shouting into the void with this one but like. Genuinely so many low support needs people dont understand what it's like having even medium support needs. Like I am entirely dependent on other people for many of my needs. I can not see a doctor without someone else scheduling the appointment, taking me there and doing a large amount of the communication for me.

If my caretaker had not been accepting of me being trans and invested hundreds of hours into psych appointments and taking me to my endocrinologist and doing all the paperwork involved with my name change and literally taking a week off work to stay with me in the hospital for surgery etc i would have just like. Never transitioned. My ability to transition was entirely dependent on a singular person and that's what a lot of other parts of my life are like as well. and that's fucking terrifying and a great way to be neglected and abused in ways that are horribly hard to get away from.

I dont drive, I dont work, I struggle to leave the house at all, I dont fucking communicate with people majority of the time. The things that are hard for you? I probably can not do them to begin with. No one in my family lives even close to a comparable life to me. None of my irl friends do. I'm incredibly isolated.

And then I go online and see people rant about how easy MSN and HSN people have it because we just get everything we need and how because people can tell we are disabled everything is so easy because none of you even manage to listen to us talk about the neglect and abuse and trauma we face/d. I see people angry at their (more) disabled siblings for getting care they need to survive instead of mad at society for creating a system where its incredibly hard for families to take care of both a higher support needs child and another child.

And I see people who live completely independent lives who work and drive and make their own doctors appointments and grocery shop and travel by themselves call themselves MSN (I could go on a rant about how that's also often the fault of LSN influencers for not leaving a lot of room in their own community for legitimate struggle but that's for another day).

I just want my needs met. I want to be able to decide where I live. I want choice in my care. I want to be able to have community with those like me. I want others to realize I exist and leave the words i have to describe my existence alone. I want others to listen to what I have to say about what my life is like.

#autistic adult #actually autistic #autistic community #medium support needs #actually disabled #semiverbal autistic #semi verbal #support needs

[spooksforsammy]

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!

#speech4amy #actually autistic #disabled poc #disability #neurodivergent #autism #neurodiversity #medium support needs #moderate support needs #actually autism #actual autistic #high support needs

[cryptid-aac]

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!!

#actually autistic #high support needs #medium support needs #semiverbal #aac user #level 2 autism #level 3 autism #intellectual disability #language disorder #severe autism #non native english speaker #blind #positivity post #totally not bc of ableist #totally not

[boughkeeper-dainsleif]

thinking about the time i said to a couple people that i can't drive due to my autism, and one of them said something like "i don't have a choice bc my parents made me drive". that bothered me for a while, and continues to bother me. i don't have a choice either. if my life depended on me driving, i would die.

it feels to me like whenever i say "i can't do this because of my autism", allistics (or often times lower support needs autistics) assume that i have actually just decided not to do something, instead of understanding that i am physically incapable of doing it, even if my life depended on it, even if i desperately wanted to.

i wish allistics understood that an autistic person's limitations cannot be changed with motivation or different choices. sometimes it feels like other people have a harder time accepting my needs and limits. than i do myself.

#autism #lvl 2 autism #level 2 autism #autistic #medium support needs #autism acceptance #autism spectrum disorder #mid support needs #autism support needs

[pumpkinspicedmochi]

People are always like "I'm autistic too and I CAN work/do thing! so you can too, those are excuses" or "I also have back pain and I can stand for HOURS to work you just lazy"/ "well my feet hurt all the time but I Still work so.."

but did it possibly occur to you that..MY autism isn't YOUR autism?, my scoliosis isn't yours ..mine for all you know could be worse than yours and even if yours is a higher curve number ours still won't be same neither will our pain be the same. Say this to say: don't compare yourself to others in that way, I've seen people do this with like adhd too like I don have adhd that I know but do struggle with executive dysfunction and just because you can do whatever and you don't struggle with it at all or as much as others doesn't then give you the right to say "well I have that too and so I know for a fact you CAN do the thing , you just lazy! I can say because I have same disorder and therefor-" please shut the fuck up, we not the same.

#actually autistic #actuallyautistic #actually disabled #disability #actually autism #disabled #autism #physical disability #neurodivergent #chronic pain #autistic #medium support needs #autism spectrum disorder #autistic spectrum #autism spectrum #autistic community #autistic adult #autistic things #neurodivergency #neurodiversity #neurodivergence #neurodiverse stuff #disability advocacy #disabilities #disability rights #physically disabled #actuallydisabled

[twisted-rat-king]

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.

#tw ableism #ableism #sanism #schizophrenia #autism #actually psychotic #neurodivergent #actually neurodiverse #actually neurodivergent #disabled #actually disabled #did #osdd did #high support needs #medium support needs #mid support needs #-Bun #-TL

[aacalienz]

Adults with intellectual and developmental disabilities are ADULTS. Not eternal children

#low support needs #medium support needs #actually autistic #ableism #developmentalal disability #developmentally disabled #I/DD

[neuroticboyfriend]

#julian rants #autistic #autistic communication #stimming #verbal stims #verbal stimming #stims #autism #autism spectrum #medium support needs autistic #msap #medium support needs #neurodivergent #autistic spectrum #actually autism #actually autistic #tumblr polls #polls #tumblr poll #poll

[five-thousand-loaves-of-bread]

support need deserve met even if technically can survive without

and

if able not die without support, have advantage than people who would die without support

both true same time

#loaf screm #high support needs #medium support needs #low support needs

[p1xelpc]

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

#not know if people will understand #this the one that not know where going with #this the one that made cry #pix writing #disability #visible disability #high support needs #medium support needs #autism #nonverbal #physical disability #nonspeaking #wheelchair user #cripple punk #c punk #disabled #actually disabled #actually autistic #disability visibility

[zebulontheplanet]

You. Are. worthy.

Even if you never drive. Even if you need help with basic tasks. Even if you need help with hygiene. Even if you’ll never work. Even if you’ll need help for the rest of your life. You’re. Still. Worthy.

Don’t let anyone tell you that you’re useless, or that you don’t deserve certain things. You’re amazing, and I see you.

#autism #medium support needs #semiverbal #actually autism #venty #you’re still worthy #you got this #actually autistic #disabled #actually disabled #Zebplanet

[spectrumgarden]

This autism month please remember those of us who:

need verbal prompting (someone telling us each single, small step to a task) or hands on help for things like showering, getting dressed, cooking simple meals, using a toilet ....

who struggle to go outside alone or cant do it all, not out of fear or no motivation or anything but because we keep getting lost and cant find our way back, because the outside world is like a blurry maze that never becomes more logical no matter how many times we have walked that street, because we need help with mobility aids, or can not understand that cars are dangerous, other people can be dangerous, ...

whose bodies dont listen to what our brains tell it to do. Whose bodies throw things when we didnt tell it to, told it to stop. Who hit our head against the walls while wishing we could stop. Whose bodies freeze when we tell it to move. Not just for a task we are unable to start, but any movement at all. I dont mean when i'm stuck scrolling through my phone thinking about how much i should do that task but cant, I mean when im sitting on the kitchen floor and staring into space for an hour unable to even lift my hand to scratch my nose.

Those of us that will never work a job outside of sheltered workshops, if at all.

Who drool and scream and jump and hum and rock in the waiting room at the doctors office, on public transport, ...

#actually autistic #autistic adult #autistic community #actually disabled #medium support needs #autism acceptance month #autism awareness month #red instead

[spooksforsammy]

Geniuenly like. So many people claim support disability. But then say something completely untrue

Y’all support autism? So what about when the person has intellectual disability or need help walk talk eat bath use bathroom? Does your support end when you see someone with higher needs?? Someone who actually genuinely won’t survive without support from others n that support is sometimes having other people do everything for them.

Y’all support depression? What about when the person can’t bring themself to get out of bed for days on end? What about when that person goes days weeks months without cleaning self because can’t get up even though need to?

Yall support schizo-spec disorders & psychosis? What about what the person get violent because of their delusions n hallucinations? The ones know are fake but still can’t help but believe in? The ones genuinely believe in their delusions/ hallucinations? What about the ones don’t don’t get violent to self n other because of the disorder? Those that just sit scared about the hallucinations n delusions. The ones that won’t leave their room/ house out of fear of their delusions/ hallucinations?

Y’all support those with physical disabilities? What about the housebound bedbound ones? The ones need gait trainers walkers wheelchairs? What about the ones who full time users? Or the ones that need power chairs to independently move around? What about the ones crying screaming throwing up from their pain?

What about the disabled that always have a horrible attitude because tired of yhr disrespect? Tired of having to explain everything about them to everyone even if personal? Tired being told get over it n just educate others?

The disabled ones tired telling people not use certain terms. Tired of being spoken over n for without being thought about or asked. Tired of hearing their communication isn’t valid for ‘xyz’

Y’all support but act very picky about who deserves support and who’s not worthy of it. It’s not support if you pickin n choosing

#speech4amy #actually autistic #disabled poc #disability #autism #medium support needs #physical disability #mental disability #add on if want. know left out a lot but something #just couldn’t talk about because don’t actually experience but added as much as could #aac user #long post