autistic-answers

[autistic-answers]

i dont think non aac users will ever understand the helplessness that we feel in regards to communication.

your device pronounces a word wrong. laughter. its fine, just go with it. but thats not what you meant. the meaning is changed. you type it differently, hoping to trick the program into saying it right. it doesnt.

your device bugs. you have to use a voice that does not match how you feel inside. you feel dysphoric like you did before you went on t. laughter from others. its fine because it has to be.

someone makes a bigoted remark to another person. you are typing as fast as you can - "that's not okay, you need to apologize" - your hands are shaking with the effort to be fast. the conversation moves on before you can hit "play". harm has been done and you have no control over it.

you navigate through a few folders. you want the word "sun". you keep hitting the button next to it, cloud. you hit delete. try again. you hit cloud. delete. try again. you hit cloud. over and over again. your body seems to have a mind of its own. it is frustrating. it is so so easy for everyone else.

your tablet is in the other room and you are trying to fingerspell. you want to sign "d". you see the shape your hand needs to be in in your mind. you keep signing "f". your hand will not make the correct finger go up and the rest go down.

the other person is trying to be patient. but theyre not. theyre frustrated. theyre trying not to show it. theyre frustrated. theyre frustrated. it radiates out from their body and makes your blood run cold. you're nauseous. you are always waiting for someone to lose their patience. it has happened before. it will happen again.

"do you understand how hard it is for us to get used to this" they say. youre about to cry. and if you, the aac user, if you show frustration, anger, sadness, anxiety, about not being able to communicate - you are difficult. "if you tried harder to speak, we wouldn't have these problems" - it stays unspoken but you hear it echoing in their words, on their faces, on the exhale of breath as they put their hands in their lap and call you "sweetie."

[autistic-answers]

People need to understand this about autism:

Its morally neutral.

It's not a good or bad thing. It just exists. You have it, it's whatever. You might like some of it, you might hate some of it, you might like all of it or none of it. But it doesn't make you a good or bad person.

Understanding this helps avoid aspie supremacy as well as demonization of autism, I think. If I'm wrong, please politely correct me.

[autistic-answers]

[Image description in alt text]

"I think for some of us, being helpful was the only way we were able to hold on to friends."

Could this be why I have so much trouble making and keeping friends? I don't know if I really know how. Sometimes I tried to make mentorship-style friendships and then I ended up getting overwhelmed and withdrawing. I haven't had friends in a long time and I don't know if I ever will again.

Ah, to be a perpetual people pleaser. I think for some of us, being helpful was the only way we were able to hold on to friends. I'm glad I was eventually able to find people who actually liked me for me.

[autistic-answers]

About an anon ask regarding wearing pull-ups (i.e., disposable underpants/"adult diapers")

My answer

A person wanted to know if it was okay for them to wear pull-ups. They found pull-ups comfortable and they sometimes had accidents for various reasons. Some sexual content was also described.

To this person:

If you have accidents, that is a valid reason to wear pull-ups. It is a good idea to protect your clothes and make clean-up easier.

You listed other reasons to wear pull-ups. That is your business and doesn't have to be anyone else's. If it comes up in conversation, you can say "I have accidents sometimes." That's all the information they need to hear. You don't need to share anything else unless you want to and this is someone you really trust (and who is okay with hearing about stuff like this).

I am sorry I did not answer your ask directly. The reason is because I am not comfortable sharing and discussing the sexual parts of it. That doesn't mean you need to feel bad, though.

Why I don't discuss sexy stuff

I am an asexual who is mostly sex-repulsed. The topic is uncomfortable for me. But that's just me and how I roll. It doesn't mean there is anything wrong with you thinking about it, talking about it, or doing other stuff without me involved. It's not for me, that's all.

The anon clearly didn't know this. Anon, I don't want you to feel bad about asking. I am not upset with anyone.

Generally, I will not answer asks related to sexy stuff. But you should absolutely feel free to go to quality education resources like Scarleteen and Planned Parenthood. There are people, forums, and resources out there to help people with questions like this. I'm just not one.

[autistic-answers]

do you have a YouTube channel? if not, have you ever thought about making one?

I have thought about it, but I balk at the idea of a face or voice reveal.

I am careful about my privacy online. As Luna Rose, I can talk freely about my autistic life and what it means to be at my level of disability. But if that were linked to my IRL name, it could affect my ability to get a job. And people like coworkers might view me differently.

So I am cautious, probably overcautious, about sharing identifying information. Like how I look or what I sound like.

Most YouTube videos involve faces or at least voices. I don't know what I would even post without involving that.

I'll also admit that video isn't a medium I use much (unless you count watching Netflix with subtitles).

Anyway, thanks for showing interest! I'm not planning on making videos, but I have heard many autistics make great content on YouTube.

[autistic-answers]

i know many people are against mental age, but am I okay to use it for myself? im autistic and I never really mentally went over a certain age

How you think about yourself inside your head is no one's business but your own. When it comes to talking out loud or writing, it's usually best to try to do it in a way that doesn't push ableist narratives.

Today, I will explain why and also tell you what I do as someone who often does not feel like an adult.

Why don't people like mental age?

The theory of "mental age" is often weaponized against people with developmental disabilities, especially those with intellectual disability.

Non-disabled people tend to use mental age to limit the rights and opportunities of disabled people.

It encourages infantilization. For example, if someone is described as "mentally five years old," they may be denied opportunities to explore age-appropriate things, even if the person wants to do so.

It discourages human rights. If people declare a 30-year-old to be "mentally 11 years old," they might deny that person the right to marry or vote. This happens in real life.

It diminishes skills and experience. If you call a 50-year-old "mentally a child," it ignores their decades of experience and time to grow their skills. Many disabled people have "spiky skill profiles," meaning that we may have impairments in some areas while being more skilled in others. But claiming someone is mentally a child/teen means ignoring all that.

People often don't even try that hard to be accurate. When I was in my late teens or so, some rando armchair-diagnosed me with a mental age of 5. And saw me through that highly limited lens.

I don't endorse the idea of mental age. I believe disabled people deserve equal rights and shouldn't be held back from trying age-appropriate things if we want to try. (We might need more help, and some things might be out of reach, but preconceptions shouldn't limit us. Like, I should be allowed to vote.)

I started a wiki article on intellectual disability and I included info on levels of disability. Many articles used "mental age" as a comparison. But I did not. I said "similar skills to this age" and then I clarified that each person will have stronger skills in some areas than others.

Disabled teens and adults should not have dignity and agency taken away by people assigning us a mental age. But this happens a lot. Not just historically, in the present too.

This is why so many push back against the idea of mental age.

My own feelings

I am in my late 20s and I will be 30 before too long. I know I write well. But sometimes, I feel like a 12-year-old who is being forced to act like an adult.

This is partly because I don't live independently. It would be unsafe to try. I live like a preteen (or something like that), microwaving meals and cleaning my room a little but not cooking or managing my own money. I need adult help for most of the "grown-up stuff." I work part-time because full-time is too hard.

Working a job feels weird. Seeing my similarly-aged cousin comfortably do adult things that are too hard for me feels weird. Knowing that my peers are interested in "adult" things like houses and skincare while I still like toys and comics feels weird. Seeing how the people on TV celebrate 30th birthdays and knowing how different it is from my idea of fun feels weird.

But if I were to call myself mentally 12 years old, it would ignore the fact that I am good at writing and coding. My skills and the wisdom I've learned would be erased. Even if I am nothing like most people in their late 20s.

How do I honor my feelings and my skills at the same time? I say "I often feel like a 12-year-old forced to play grown-up."

This describes my feelings without implying that I am not a real adult who doesn't deserve adult rights. I am a developmentally disabled adult. I can feel like a preteen while still deserving adult opportunities and choices.

tl;dr: The concept of mental age is often used to restrict people's freedom and rights. So I don't think we should encourage other people to think that way. But it's okay to say "I don't feel like an adult." An "I feel" statement can honor your perceptions without betraying your rights.

[autistic-answers]

do you have pink hair? 💗

Pink hair is fun! Here's a recent self-portrait:

I did cut my hair last year due to autistic regression/burnout. I needed something easier to wash. I should probably update my profile picture on this blog at some point to show my new hair length.

[autistic-answers]

It's important for autistics without intellectual disability to respect the people who have it!

i have so much i want to say about the ableism towards people with ID that comes from autistic people, but i have no clue how to word it.

i have both, and oftentimes it is unintentional but it doesn’t make it any less upsetting to deal with

[autistic-answers]

Some autistic people have intellectual disability, dyslexia, cognitive impairment, and other conditions.

These people also deserve access to services and supports. They deserve help understanding things.

These people are real.

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

[autistic-answers]

do you have any special interests?

Oh yes! Autism is my special interest! It has been for over 11 years now! It's one reason why I have this blog. I've researched and written so many articles about autism.

I also have an intense interest in writing stories and whatever story/stories I'm writing at the moment. I love creating fictional worlds and characters; it's utterly fascinating. I post them on Wattpad sometimes.

Witness the glory of my special interests here:

The Autism Wellbeing Wiki, which I started for autism-related infodumps. The long bibliographies are my collections of facts.

Wattpad has some of my fiction! I'm actually releasing a serial novella with multiple autistic characters, Witches Rising, that updates Sundays right now.

I haven't worked on wikiHow's autism articles much lately, but they have a lot of content. I illustrated some too.

[autistic-answers]

Cute date idea: you take your partner to a location about their special interest and have them tell you all about it.

[autistic-answers]

This is an important point.

If I were forced to live independently, it would mean:

Deterioration of my living situation (food not bought on time, medications not picked up, health hazards from not cleaning)

Abysmal mental health

Crises that would be totally preventable if I'd just had help

Downward spiral getting VERY bad

Possible hospitalization

???

I couldn't stay healthy or safe. It would be dangerous.

Trying to imagine whether I would survive is awfully hypothetical and terrifying. I am thankful I've never had to find out and I don't want to explore that train of thought. I'd hope someone would rescue me first.

Support needs aren't just about being physically alive. They are also about preventing danger and avoidable health issues.

I need my parents to keep me healthy and safe. That is a valid need. Living independently wouldn't be safe for me. That is why I consider myself medium support needs (MSN). On the lower end, but still MSN.

Safety is not a luxury. Health needs are not luxuries. They are real needs.

needs are not wants, however needs are not only things that would leave us dead if we didnt fulfill them. It's more complicated than that.

If you cannot find happiness, if everything always hurts, if you have zero energy and so on, your needs are likely not met.

Some people have needs that cannot be met and that is part of a disability very often. Only few of us can truly get their needs met with accommodations and support.

If all you can do with your current support is to barely survive, you have unmet needs. Doesn't matter if it's realistically possible to meet them or not.

And no, that doesn't mean that there is no difference between needing support just to survive vs needing support to get your needs met. But both are support needs.

[autistic-answers]

service dog discrimination and ableism against service dog handlers isn't just petting a service dog without asking.

it's talking to the dog while they're on duty. no amount of "oh i know I can't pet you but you're so cute!" when you do so at a restaurant while she's laying at my feet makes it okay.

it's pointing the dog out to your kids and encouraging them to get excited and yell when we come close, when all I'm trying to do is grab a package of hot dogs for dinner. or allowing them to follow us around until you trigger a meltdown, and then realize you've fucked up.

it's coming up to ask me questions when she's actively performing task work, and when I inform you she's tasking you proceed to ask questions about her tasks and what she does.

it's being incessant about asking about what my dog is trained to do and what MY issues are, because you can't manage your own curiosity and emotions.

it's recording us and photographing us without my consent. there are at least four recordings of my dog and i in the world somewhere, and i believe photos of us while she's actively been tasking.

it's denying us access to locations on rules that don't exist.

it's refusing to educate yourself on federal ADA and state laws, refusing to listen when i inform you on those laws, and spreading misinformation instead of listening to handlers.

it's hiding us away out of sight so we don't "bother others" when we go out into public under the guise of making the dog comfortable, or "giving us space" when there were plenty of other options that weren't isolated and alone.

its following us through stores and public locations to gawk at my dog.

it's being denied 10+ jobs that otherwise you were loved for because you told them at the end of the phone interview "just so you're aware, I also have a service animal and will be needing accommodations" and suddenly they no longer want you, despite being okay with the wheelchair and crutches. because everyone loves the dog until they have to put in the effort for the handler.

it's speaking to the dog instead of the handler, or ignoring the handler's needs.

it's becoming a public spectacle every time you leave your home, because everyone wants to ask questions, talk to you, and fawn over your dog.

it's being the last thought for an event, or not even a thought at all, with people who know you will always have a service dog accompanying you and require accommodation in all circumstances, whether that be just the dog or dog and wheelchair. its knowing you were not included in the planning, or were expected to leave her behind and put yourself at risk.

its being asked or told to leave your dog at home, because "why do you need them? can't you just go without them?"

its becoming angry when you're asked to leave us alone, and causing the fear of aggression or retaliation for speaking up for yourself.

its people taking your aid less seriously because its a dog, and they only see a cute companion, and it can't possibly be as important as the other aids you rely on, despite her being the thing that has saved your life more than once.

its taking your pets into places they should not be because "you want them there" or "whats the worst that could happen"

its so many little things in my life that add up that most people don't even realize they do, or don't think about, but i think about them and it hurts and it sucks. it is so simple to treat service dogs and service dog handlers with respect. it is so simple to treat disabled people with respect. i want to be left alone and i want people to give my service animal the actual respect she deserves for the work she does, and i want to be included. im so tired.

[autistic-answers]

[Images: What some people think all stimming is: Flappy hands! What my stimming usually looks like: pacing, pen clicking, slamming my fists on things, swaying/rocking.]

There are many ways to stim!

Just to make it clear: I am NOT saying that "basic" stimming=bad. I'm saying that everyone stims differently, and that's awesome! I wanna see more diverse stimming rep in media hehe

[autistic-answers]

I don't love the community's tendency to jump to attack mode over misunderstandings.

I've been on the receiving end more than once lately: I say something that was well-meaning but not as clearly worded as I thought, and people immediately go on the offensive.

Name-calling. Treating me like a horrible person. Saying things like, "it is ableist if you do not already know about X" when I was trying to learn about X. Assuming that I am their enemy when I was trying to be a friend.

I get that a lot of autistics are traumatized. That so many of us have been mistreated so many times, they tend to be on high alert for threats. And that internet culture conditions us to "clap back" or "dunk on" or whatever the metaphor is for being rude to someone you believe is in the wrong.

IDK, as an autistic person who is just trying to understand and engage with the world, it really stinks. The world can be difficult already and then sometimes when I try to engage with others like me, they turn on me and call me names.

I wish people would give me the benefit of the doubt more. Or ask "do you mean X or Y" or say "by the way, you should know that actually Z" instead of jumping to "you are clearly a horrible person."

IDK if I'm making sense. Getting rejected by the non-autistic world when you're doing your best is hard enough. It stinks when it happens from inside the community too.

[autistic-answers]

Poll: autistics, how would you feel about non-autistic disabled people using support need labels (HSN/MSN/LSN)?

I am talking about the community-based labels high support needs (HSN), medium support needs (MSN), and low(er) support needs (LSN). From what I can tell, these labels originated in the Autistic community.

Do you think these labels should be open to the broader neurodivergent/disability community? For example, would you be cool with people who have conditions like cerebral palsy or Down syndrome using these labels to describe their support needs?

Please feel free to share so we get more respondents!

(edit for clarity: This is specifically about HSN/MSN/LSN acronyms)

[autistic-answers]

"You shouldn't make being disabled a part of your identity" bro you're gonna tell me next that I shouldn't make being Asian or queer or a woman a part of my identity too? Because if you don't "see" my disability then you ain't seeing me.