#moderate support needs

[the-sun-system]

Hey, here’s a concept. What if we stopped saying “but autistic people CAN do all those things” (erasing high support needs) and instead started saying “not being able to do those things doesn’t impact someone’s value as a person nor does it make it okay to commit eugenics”.

[autisticvelo]

”autistic people don’t do [ extremely common higher support need , higher level autistic trait / symptom ] , that just stereotype”

you need include us too : you need include childish autistic person , you need include nonverbal autistic person , you need include autistic person who drool , you need include autistic people with intellectual disability , you need include autistic person with loud messy public meltdowns .

can not hide behind “it just stereotype” because that not true . there are many people very disabled by autism , you need remember us and include us .

[osokasstuff]

it is possible to live happy life and have a happy future when you have medium/high support needs. it's possible for us to be accommodated. it's possible to get needs met. it's possible to find a satisfying way of existence.

i want to bring some hope for us. yes, we are often trapped in unsatisfying situations. from abusive homes/bad caretakers/unsupportive environments/etc. to dictatorships that we have additional barriers to escape from.

but. we aren't doomed to stay like this forever. we aren't doomed to live unsatisfying life.

it's possible to get more needs met. it's possible to get supportive and accessible environment. it's possible to flee abusive/toxic/dangerous situations. it's possible to get more joy. it's possible to find community. it's possible to find things that bring you joy, make you feel like you do something meaningful. it's possible to be happy.

i can't promise everything will be good. but i can hope. and i want to share this hope with you. i wish we all get some hope on better future.

[heatlightning-mp3]

yeah, you're autistic, but do you make fun of people who have "childish" or "immature" interests? do you look down on people who talk to themselves or use obvious, unmasked repetititive movements in public and/or avoid being associated with then? do you berate people who can't understand social cues and/or nuance and/or aren't adept at realizing when they're crossing boundaries as you are because you think that they "should know better"? do you treat people who can't always or ever tell that someone else is bullying / mistreating them like they're too clueless to have autonomy? do you look on in disgust at people who aren't toilet trained / don't maintain hygiene / have "gross habits"? do you view others who don't try as hard to mask and / or aren't as adept as "putting on a show" or "faking" their autistic traits?

because like - never gonna deny anyone else's autism, and there's no way for anyone to fully understand someone else's internal experience - but if you as an autistic person still throw the people in your demographic that aren't as adept at hiding their Less Savory autism traits under the bus so that you can distance yourself from the so-called Bad Autistics, then you really need to try harder to protect the people in your community that are truly vulnerable and also realize that you, yourself, are not exempt from being othered just as easily as the rest of us if you slip up.

[autismaccount]

This is a survey to understand how autistic people use and understand language. @neurodivergent-mermaid, a nonverbal autistic person, gave me the idea and helped me word some of the questions.

The survey is for everyone who has or might have autism, including those who suspect autism but aren't diagnosed with it. This survey is just for fun, not research!

Page 1 is about how well you can talk and write. This includes how often you go mute and if you can talk during meltdowns.

Page 2 is about how well you can understand language.

Page 3 is about other conditions that you might have that can affect your language.

Page 4 is about your developmental history. This includes when you started talking and if you've had speech therapy.

Page 5 is about demographics. It asks your autism diagnosis, age, gender, and ethnicity.

You can skip any questions that you do not want to answer. You can stop taking the survey at any time. If you do not submit the survey, no one will see your responses. The survey is completely anonymous; no one will know if you took the survey or what your responses are.

When I have enough responses, I'll post them here!

[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!

[echolalialand]

i think low support needs autistics take some of the things we moderate and high support needs autistics struggle with for granted.

like, showering. "i have meltdowns when i can't shower because i feel dirty." i can't put the right pieces together in my brain to get myself there more than once every other week or sometimes less without support, and even then i never do it "all the way". the sensory experience of showering is way worse than being dirty and i can't just "force" myself to go through it. imagine feeling dirty and being unable to clean yourself? feeling dirty and being unable to communicate that?

eating. i'm sorry that eating something weird upset you but that you "had" to, but i will starve without access to my safe foods. i literally will not have an appetite without access to my safe foods. imagine not being able to tolerate food to the degree of needing a feeding tube, or being unable to continue eating a safe food when the packaging changes.

cleaning. disorganization upsets you. great, me too. i need extensive emotional preparation, warning, and continuous prompting in order to even hope to clean, and even then it is extremely difficult and causes meltdowns and i may not even be able to do it. imagine having to leave cleaning your space completely up to someone else, how much of an invasion of privacy that is.

these are only a few of the things that i struggle with and many msn/hsn autistics struggle with. and there are even more.

not to say that lsn autistics don't struggle with these things, but that some lsn autistics tend to take things for granted that many msn/hsn autistics can't do independently.

[stuffieautism]

autistic people are not all able to integrate into the world in the ways you think we should be able to, with the accommodations that helped you or someone with lower support needs.

i had to give up on registering for a service that was supposed to help people like me with phone calls for doctor appointments, etc because it became extremely clear that their service was not accessible for someone (myself) with cognitive impairments. i asked for help with understanding and their response was incomprehensible to my brain. i couldn’t use a service for disabled people because i am too disabled.

yes, do not assume incompetence, but also don’t assume someone not able to understand complex concepts and systems and such, isn’t a person with feelings and a life and existence that matters, even if it doesn’t make sense to you

and please for the love of god stop demeaning “neurotypicals” for being “stupid” when they can’t understand things you deem simple if, for no other reason, then because in doing so you are being ableist to fellow autistic and neurodevelopmentally disabled people who can’t understand because of our own disabilities, which may even be the same as yours, on a different part of the spectrum.

not being “intelligent” or functional doesn’t make me unworthy of life and joy

[azaleasautism]

I am angry right now.

“Autism isn’t a disability!” Fuck you. Actually genuinely fuck you. Yes it fucking is.

Even for lsn people, the autism criteria included it being significantly disabling.

Even if it’s easier for some than others, it’s a fucking disability.

Don’t anyone fucking tell me to my face that autism isn’t a disability when I can’t even function alone. Fuck all the way off.

[lesbianologist]

friendly reminder that late diagnosed does not innately mean low support needs. plenty of us just didn’t get adequate medical care as children due to a myriad of reasons (eg. abuse/neglect, poverty, parental neglect, school system failure, lack of mental health resources, medical neglect due to misogyny or ableism, etc.) but again—late diagnosed does not innately or intrinsically equate to low support needs. many of us were seen, and hell—some of us were even identified by professionals as being “potentially autistic”, or “showing autistic traits” and yet either never diagnosed or our parents never told us.

[nightcolorz]

not enough of u on this website are the level of disabled in which everyone who meets u talks to u in a soft high voice and acts really excited to meet you and is strangely charmed and amused by everything you say and gives you a high five and calls you buddy and it shows

[autisticvelo]

many autistic people need people use simpler words when talking to them

many autistic people need tasks broken into tiny steps to understand how do something

many autistic people need positive feedback in way that other think condescending

many autistic people childish and have childish interests

many autistic people have to always be supervised never alone because of risk of hurt self or get in dangerous situations

many autistic people have violent messy big meltdown, even in public

many autistic people struggle with speech always will maybe rest of life (non verbal, semi verbal, demi verbal etc.)

AND most of these autistic people higher support needs + level 2 & 3 autism, don’t forget or ignore us. can’t say “that not true just stereotypes” when it just symptom and sign of higher support needs higher level autism.

you want to raise awareness for lower support needs level 1 autism and yes good ok!!!! but not this way where throw HrSN level 2+3 autistic under bus.

- winnie

[seasickzig]

Executive dysfunction caused by Autism makes me so mad.

People always talk about it with ADHD, and I always hear people being grateful that their executive dysfunction is fixed with meds.

I cannot be fixed.

And executive dysfunction isn’t just the “Go go chemical” that allows you to get started/follow through on projects, it also impacts your ability to organize thoughts, make plans, prioritize tasks, manage time, and make decisions.

I cannot get out of bed. It has been four hours since I woke up. Meds will not fix this.

I cannot do chores. I must be prompted. Meds will not fix this.

I cannot make plans. I’m autistic and NEED plans, but I can’t make them. Meds will not fix this.

I cannot think straight. Every thought echoes in my head with no conclusion. Meds will not fix this.

I cannot make decisions. People ask me things and my brain goes blank. Meds will not fix this.

I cannot do anything for myself. Executive dysfunction has stolen control from me. Meds will not fix this.

[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%).

[spooksforsammy]

One reason don’t joke about autism is because don’t want be seen as joke.

Not funny not able regulate emotions. Not funny having difficulties with social interaction. Not funny need people already know around help socialize and make new friends. Not funny that at current age still need supervision going places.

Not funny that put life in danger because low environment awareness and sense of danger. Not funny know possibility never able live alone. Or go college. Or even walk to park that barely 5 minutes away from house.

It’s not funny that small things have me breaking down, crying, yelling, hitting myself and others. It’s not funny that a small change of plans will ruin my whole mood. Not funny that make random faces, don’t notice am making them, and get yelled at for face.

Not saying don’t have good autism traits. But if joke about good ones, others won’t take my bad one’s seriously.

[echolalialand]

i understand low support needs people telling other low support needs people not to seek a diagnosis right now bc of the threat of the rfk jr database or to get your diagnosis changed, but some of us fucking need it.

and please understand that not all higher support needs people are officially diagnosed or have it on their chart. higher support needs autistics are unbelievably susceptible to abuse and medical neglect, which can involve withholding diagnosis. not to mention poverty and financial barriers, lack of insurance, lack of awareness and understanding, etc.

for us higher support needs people who are chronically undersupported, often/sometimes even neglected, a lot of us need to seek diagnosis as soon as we're able because we are suffering without resources.

we need our stuff covered by insurance. carers, therapies, equipment. we need our disability benefits, and legal protections. we need our guardianships and legal caretakers. that doesn't happen without a diagnosis.

we can't all delay diagnosis. we can't all be stealthy, or mask. we can't all advocate for ourselves without using the word "autism", we can't all access everything we need without it.

hot take: while having the resources to seek a diagnosis may be a "privilege" for some people, being able to be undiagnosed is also a huge privilege.