r/SpicyAutism

I hate it when people, usually lower support needs autistics as i've come to observe, say that their support needs fluctuate day to day. Like that's not true at all, you're just making a very broad and non nuanced statement that only causes harm instead of achieving understanding in those around you.

I mean, sure, they can fluctuate but it's often not in a way that their support needs level or their autism level would decrease or increase, and if they could do something that they couldn't do, that's often an one off case and doesn't mean that that skill is now included in your baseline. Also, i'm pretty sure that there is a lot of other things that you have to meet first for any support needs level or for any autism level because one thing shouldn't be the thing that puts you in so and so level. Especially if it's not consistent or isn't a part of your baseline, and if your doctor still has good evidence proving that you're still assigned the correct level or support needs term.

Anyway i'm not talking about how false the theory that you can fluctuate from level one to two or three the next day is, i'm talking about how this is so frustrating and so invalidating to hear from people less affected by their autism than i am for example. It just screams dismissive and invalidating. Because that is just them say

Hi, everyone. I'm an old member who just got their account back and so, am posting again.

I am on my way to starting college after this summer break. The college course is fully online, so i won't have someone drive me to college every day.

I have graduated from high school, and i'm currently in summer break, and let me just say this; It is just so boring! Nothing is happening in real life except for the odd drama or situation that starts over on social media every few months or so.

I have literally nothing to do and so i am just whiling my time online because again, i literally have nothing to do. No programs, no classes, not even shopping trips with me and my parents as they don't shop a lot.

The only things that are happening, and so i am really excited for them to come as a result, are this event which is an info night for a service provider that provides services for youth and adults with developmental disabilities, then next month is a family day at my dad's workplace.

But other than that, that's it. We've been looking for programs but nobody has responded to my mom's email yet. She sent an email to the directors of two programs that i showed her because i liked them, and still also no email was responded to.

I don't understand what is going on and if i would need to contact a developmental services agency caseworker for help on enrolling me into their programs or not, but there's no mention of doing either of this on the website for the developmental services agency or on that service provider's page.

And i can't just get up and walk to places, nor drive, due to my autism. I'm not independent enough (YET) to be able to do these things. My mom or other parent would need to be with me everytime i go out into the public, and sometimes, she can't drive nor accompany me to places due to stuff that she has to do.

I don't like it when people, especially autistic people who are independent (I am aware that you guys have your own struggles too, i am not invalidating them.), tell me that i can do it or act surprised or otherwise shocked that i cannot drive by myself or even be out in public without adult supervision.

Like there are autistic people out there who more or less have the same kind of needs as i do, like there are others out there who also need caregivers (official and unofficial like parents) and adult supervision that makes it so they can't do stuff like being out in the public without them due to safety reasons.

Yet people don't know or are surprised when confronted with the fact that these people exist, and that i (who is talking to them) am one of those people. And every time that this happens, it really annoys me. I am feeling alone in the autism community, and just, not representated.

I am feeling actively ignored when i speak to someone lower support needs than me, especially if they are surprised that people with medium or higher support needs like me exists around them.

If anything, i'm just so jealous of these autistic people who can these sorts of things independently, because it seems to me that they can do whatever they want (Within reason ofc or without idk) without having to worry about their parents' being able to drive and to supervise them while out in public.

Like i also don't understand how you can do this, what is stopping me from learning these skills?

I have wanted to go to life skills classes during high school but i couldn't because the class just wasn't suited for me and my needs, but if there was a class that taught exclusively life skills i really would have loved to join. Same goes for any programs that teaches the same skills.

I'm just frustrated and miserable right now, as i'm sure you could tell if you're reading until now on this post. (Also sorry for the long post and the fact that i had posted twice all in the same day.)

I'm feeling very hopeless. I've had a really bad week. Medicaid messed up my paperwork and wants me to do it again. The paperwork took a very long to do and I had called to ensure everything looked good. They told me everything looked good.

It was an error on their end but they declined me anyways. When I reported the issue, they refused to fix and take accountability. I asked what I could do to avoid the error in the future? They repeated the exact steps I followed. :(

I'm rethinking my life. I really really wish I wasn't so disabled that I need to rely on these broken systems. I've been hurt so badly by these systems and have never gotten the support I desperately need. Everytime I try to succeed in life, it doesn't work. Because I can't work a job, it makes life so much harder. Everything requires money. If I had money I could buy my own supports, housing, getting enough social, and everything I need like a wheelchair.

Freelancing barely pays, not even close to the federal minimum wage ($7.25 an hour). Ive never been able to work a full time job as well. I'm in the process of SSI and it feels as through I am opening the door to a life of repeated mistreatment from the goverment and nothing but misery from these broken systems.

How do I improve my quality of life? :c

Some TW: medical is affecting my ability to speak

I’m finding that I have more times where I can’t speak when I want to. I just can’t get the words to come out of my mouth. My verbal function is disintegrating. Sometimes I can think it in my mind but I can’t type it out. Sometimes I can’t even think the words at all. I’m so tired even when I get 7-8 hours of sleep. Granted it is medically induced sleep. I have always needed 10-11 hours of sleep to function and I never get it. Even with the meds.

I couldn’t sleep for two hours last night even after the meds because of the pain in my body. I couldn’t get my shoulders to not be curled up like a turtle. I’m realizing that my normal is not actually normal. I was diagnosed with hEDS. >!My shoulder was popped out of the socket? I did something and it uncurled. But there was a loud noise.!< It’s better now but it’s painful! I don’t have anything for during the day that won’t cause drowsiness. I don’t show pain the way people want me to - I shut down because of being told to stop complaining or “take a Tylenol and stop talking about it!” for many years. I’m in pain. I’m always in pain but my verbal ability seems to disappear when I need to explain it or say I’m in pain.

To my partner all I could say was I was “unwell.” And he didn’t understand- he tried and he’s always kind but I wasn’t able to give him any answers or information so he couldn’t help me. I cried myself to sleep. Exhaustion overtook my body.

When I go to doctors offices and they don’t have a way to dim the lights, I am sometimes not able to say what I need to say or I get hyper focused on medical trauma that I miss what the Dr is trying to say. I only processed that I interrupted the doctor the other day and I missed what he was going to say because I hyper-focused on a bad experience. I didn’t mean to.

I’ve been super anxious because I’m getting a wheelchair (which I need and have been waiting for and it’s going to be more months until it’s here and am super grateful) and I have had to meet a lot of people who are telling me to make changes. And the transition is making me anxious. Change is hard. I do not like change. And they’re demanding I change my whole life it seems.

I don’t like being this anxious. My medication doesn’t seem to be helping. I’ve been trying a new way in therapy where I can type instead of talking. I’m so tired.

Hello everyone my name is Teagan. I made the SpicyAutism subreddit in 2022. I feel sorry that I have not helped with the subreddit lately and I am very grateful to everyone for working hard and helping with the subreddit moderation. I am making a post to update on my life because I am not active on Reddit.

I am 24 years old and I am 62 inches tall and I weigh 92 pounds. I am living in a new home for assisted living adults with disabilities. Not everyone here has autism, they have other disabilities like intellectual disability, down syndrome, cerebral palsy and other medical conditions.

I had surgery and I have a permanent tube in my stomach called a G-tube. This is replacement the NG tube that goes through my nose to my stomach, and it is permanent. It is like a button on my stomach and there is a balloon inside my stomach that you can't see from the outside. It actually has a name! Its name is Mickey. I get the same bag liquid as the NG tube but there is a special pump machine instead and a nurse has to use it. It's loud and I don't like the noise but I get to watch Rick and Morty during and it doesn't hurt. I am used to it now. I can still eat with my mouth if I want to but I don't like to but I can still eat ice cream. I also get medicine through the G-tube.

I am diagnosed with intellectual disability. My mom lied to me when she told me that I'm smart and not intellectually disabled.

At my old group home, there is drama because some of my aides got in trouble for speaking on my behalf online. That's the reason I made the post with my speech therapist. A different aide named Jazmine is helping me write this post now. Jazmine says: "I'm asking you prompting questions and lots of follow-up questions and helping to translate your answers into a written format on Reddit based on what I know about you as a person so that everyone can know and understand your wonderful self in spite of your sometimes limited communication skills. It's my job to help you communicate what you mean, not necessarily what you can say, because those are two different and important things." Sometimes she deletes or changes things. Jazmine talks a lot and is nice to me and her hair is black and red but it changes color sometimes.

Sasha does not work there anymore but she still comes to hang out with me every Sunday because we're best friends. She has a Masters now which is like a special award for doing so much school and being really smart (this is a joke, but also true). I'm sad that I don't see her as often anymore.

Season 9 of Rick and Morty came out which made me very very happy! Please talk to me about it in the comment section. I've also been watching Adventure Time.

Note from Jazmine: Teagan got distracted and wandered off. I asked if she was finished writing the post and she made an affirmative noise. We'll circle back if she has any updates later!

hi. my name is muyang, i have level 3 autism and ID and am nonverbal. i live at a group home for disabled adults. one of my carers here acts kind of weird and it makes me feel uncomfortable around him, but i can't tell if i'm just overreacting or not.

he keeps calling me his best friend not his charge or client or anything and he keeps taking me places alone without the other people at my afc and he keeps talking weird about me. and he keeps offering to help me with showers but i usually let this one girl do my showers but hes very insistent that i let him help too. i havent said yes yet and i try to avoid showers when hes around. he also keeps offering to be in my room with me alone to "clean it".

i have trauma from people in my past being creepy so i might be overreacting cuz of that. but i'm not sure. i wanted to ask if anyone has tips to know if i'm overreacting or not, or things to look out for that might point to him being a bad person. thank you in advance.

This is a weekly post for lower support needs autistics, self diagnosed/self suspecting autistics, and allistics to ask things towards higher support needs autistics.

In this post, feel free to ask questions, seek information, or look for advice or insight.

Examples of things we tend to get asked, would be experiences in assisted living/group homes/living dependently. It may be about our support needs around daily activities and how we manage it. It may be questions around our experiences as we were children. Or it could even be how we handle life now or how we manage working or not working, etc..

Please avoid any questions regarding help in differentiating levels, or seeking help in trying to work out what your level or support needs are. We don't know you, we don't know your experiences, we are not professionals.

And remember, if you are a higher support needs autistic, you do not have to engage in any questions that you are uncomfortable with. You do not have to engage with the post at all.

Please keep all questions and comments respectful and civil. Be patient with eachother. If you don't understand a question or comment, please ask for clarification.

I hate having autism. There I said it.

I don’t want to hear anything about how autism is a superpower or a different ability for some of you guys. I don’t care what you think about your own autism. What I care about is my own autism. I don’t view it as a superpower. It’s disability through and through, no matter the existence of there being some positives or not. It still disables me.

It’s the reason why I can’t drive, I can’t do anything without needing someone else to be there with me. I need supervision literally almost every second of every minute of every hour of my life it seems, and it never went away once. I had thought when I was a kid I was able to have some independence but it was taken away the second I became a teenager, for some goddamn reason.

And as an adult, it seems to be getting worse. My parents are becoming more stingier with the screen time that they’ll give me each day, and they are also more stingier with their time as well, it seems. I mean I understand that due to my support needs, it is understandable and for my own safety, but sometimes it just singles me out.

And don’t get me started with how other autistic people react once I tell them all of this! They always seem so shocked and confused when I tell them that I can’t do things can’t go places without my parents because of my autism. Once again it singles me out more than if I had shared this with other neurotypical people. No matter what I feel singled out, and I always have from childhood all the way to now when I made this post.

Ugh, it’s just so frustrating. I’m lonely and I don’t want to risk trying anything else because i have a fear that it’ll piss me off and I’ll have a meltdown!!! Sigh.

Hey guys, i have forgotten the password for this account, but i have fixed it all and now i can log back into this account.

So, while i was gone (I was using u/kitkitkate2 for some reason but i am sure it has something to do with not knowing the password for this account after a long break off of Reddit), i had been assessed by the provincial developmental services agency, and the results came back stating that i was on the 73rd percentile which meant i am moderate support needs.

Which was so relieving, but now after a while, i was falling into the spiral (As i had posted about on my u/kitkitkate2 account) of thinking that the assessor was somehow wrong or that my mom had been lying even though she isn't known to lie. She hasn't even lied to me in these past few years.

Anyway, i am relieved to know that i was indeed medium support needs after a long time of guessing and just... Spiraling. But that ended with the results paper being handed to me.

Edit: before anyone asks how i know, here is a quote from the report that listed my support needs: " u/AutistiKait is in the 73rd percentile on the Supports Intensity Scale – Adult Version, 2nd Edition. This means that, generally u/AutistiKait ’s support needs fall in the mid compared to other adults with a developmental disability."

Edit 2: Here is the link to the post talking of me spiralling about my support needs. https://www.reddit.com/r/SpicyAutism/s/jsDsfKHh5h . I will have a link that sends you to a comment that helped me understand my percentile and what it meant for me in terms of support needs. Here is the comment link: https://www.reddit.com/r/SpicyAutism/comments/1vqwwws/comment/p4auvw7/?utm_source=share&utm_medium=web3x&utm_name=web3xcss&utm_term=1&utm_content=share_button

Any autistic discord servers for us to hang out in?

i cannot speak the few words i coud and when i try too speak its jibberish babbling nothing

i canot form words or speak

im am completely nonverbal again like when i was 15 and younger

this sucks hugely and makes me very upset but im am used too it at least

at least i have aac and mine tiktok follower mom got me a tablet and downloaded weavechat with Australian girl voice and set the settings with a case and they shipped it too mine freinds howse

such kindness it make me have more faith in the world

so i will have better way of using aac now when it comes and mine freind gives me the package

I have some screen time restrictions on all of my devices when it comes to accessing social media and for how long, and this is enacted by my parents.

I would want to stay on social media for a while, and have control over when i can access it and for how long, but my parents keep it locked down and are forcing me to have to ask them for more time, on both the computer and on my ipad and on my iphone. This app is one of the apps of which i would have to ask my parents to access, for example. Their reasoning is that i might get triggered or would otherwise ignore my basic needs if i were to stay on social media, or if i had my way on when and for how long i could use social media.

I have been triggered by social media before, especially whenever i am in an argument online with another internet user, and that has caused me to have meltdowns where my parents would have to step in to intervene or where my school has had to suspend me since i had a physically aggressive episode because i couldn't let the comment slide.

Does anyone else relate?

i slightly bumped into him trying to get to my seat i hopped and stimmed on my way to my seat and i did nothing to him but ask him too sing in his room or be quieter and i said please and since i did that he has been nonstop bullying me

im feeling like im gonna bite or hurt him i need him to be reported and more to be done then talking to him because hes just a bully

he made fun of me and bullyed me for stimming and being nonverbal and mocked me for being nonverbal and then mocked me for being severely autistic and then say " haha at least i can speak you cant"

and he mocked me for being a trans woman calling me an "it" and "a thing" and a "bitch" and then called me a he and he made fun of me for hopping skipping and stimming as if that effected him in anyway he say "it was doing weird sh*t and it wasnot doing that last night" referring too mine stimming and he was making fun of me

and others laughed with him at me

and he made fun of me for hitting mine head when i fot upset after he bullyed me

hes a big huge strong neurotypical black man and im a small skinny nonverbal severely autistic white transwoman

he has no reason to bully me how he did and i wish he would just stop because hes toxic cancerous mean bully

sorry to make so many posts i’m just so excited to finally connect w other ppl like me! so i have hEDS and dysautonomia/orthostatic hypotension (similar to POTS if that sounds more familiar to ppl) which has really limited the ways i stim. im okay with compromising some stuff, like flappies and shaking my eevee plush etc hurt my wrist but not too bad. but i cant climb, spin, flip upside down/do hard pounding jumps etc like i used to, and i feel understimulated a lot in that way even though i can do some jumps and stomps, it doesnt compare to the really physically active stuff i used to do all the time. are there alternatives to these things ive not thought of? i do have a swingy folding chair and really want to get an actual swing for the backyard which i think will help a lot. my amazing hEDS specialist physical therapist (who’s v autism affirming) tried to help me come up with alternates but some of it was stuff she helped me w and she moved away. wondering what your favorite ways to get proprioceptive input are?! what are your best sensory tools?

Hi, i'm Teagan, and i'm a Medium/Moderate Support Needs autistic.

I have found this space after i saw that most spaces and particularly subreddits didn't have many higher-support-needs autistic members posting and commenting. Other subreddits aren't safe spaces for higher support needs autistics because when we talk about our experiences with our autistic traits and struggles, people tend to shoot us down or shut us down by dismissing us.

The broader online autism community is not very representative of everyone on the autism spectrum, as i've noticed that the people who post more and have more followers are people with low support needs or level 1 autism.

I don't see a whole lot of autistic creators with more rarer presentations and with higher support needs autism, although i am a part of a subgroup that is almost exclusively full of higher support needs autistics. While i understand that it can be hard for us to make content, i still feel bad that the mutuals who i follow on Instagram don't get a ton of attention for their posts that they make, which are usually in an educational sort of sense.

Anyway, i'm happy to have found this space because it is full of people who are like me, or are otherwise able to relate to my experiences with higher support needs autism. Especially as every other sub often calls me a faker or tries to convince me that i'm not actually medium support needs as, according to them anyway, support needs fluctuate day to day while that has never be true nor will it never become true.

Hello! I’m 19 years old and I’m in my third senior year (as in I’ve done senior year, then another year for makeup, and now this year) and im really scared about my future.. I’ve struggled really hard with school and I get burnout really easily, which makes me nervous about college. I want to go but I don’t think I possess the right skill set that will let me succeed. I’m interested in healthcare, but it’s a very hard path to go down, and I’m not sure I’d be able to do it. (The only hope I have is that in every career test I’ve taken, healthcare is the number one result)

One of the biggest problems is that it’s really hard for me to do any kind of homework because my brain separates class and home as two very different things.( school is for working and home is for resting) so the fact that you have to work on the projects yourself without anyone’s help in college really throws me off(I also work better around my friends/other people).

This is also without the fact I’d probably have to work a job. The only job I’ve ever had was a closer/dishwasher at my friends bakery, but it ended badly. I started throwing up digested blood because I got so stressed I didn’t eat for the whole week I had the job. This was also a part time job, not even full time.

All of this combined with the fact I do very badly in new environments and social situations makes me extremely nervous. If anyone could provide any experience they’ve had with college or any advice, it would greatly help me. Thank you^^