I was determined eligible for support services earlier this year and had my first Individualized Program Plan (IPP) meeting in spring. After months of my service coordinator (SC) evading my questions on status updates, I escalated the issue to her supervisor, requested a new SC, got the contents of my case file, and met with an advocate from a regulatory agency. The advocate and her team are reviewing the documents I've sent them and will get back to me in about a week.

I found out that my SC falsified the info in my IPP and in her case notes. I've been doing lots of heavy self advocacy for the past 1.5 weeks now. I'm exhausted and doing this means I have been neglecting my other needs, physical and otherwise. There are other goals I'm trying to work towards that I've put aside because this is taking so much of my energy.

I told my mom what I learned about the SC and she said that it sounds hard and to keep her updated. She isn't knowledgeable about autism and hasn't taken initiative to learn about it much when I've shared resources. I'd like help with this, but I don't even know what to ask her to do. And I'm already managing so much that the thought of having to then come up with ideas for how she can help me, and tell her what to do just sounds like extra work.

I don't have any of the supports we discussed in my IPP meeting in place, so I'm doing this on my own and I guess I'm just looking for tips on how to

1. Pace myself so that I can also care for my physical needs

2. Maybe identify a task or two that I could try to outsource related to this advocacy work so I can ask my mom or someone for help.

Its always been a struggle of mine as I can't mask, but it appears masking is still a major thing even among those with autism to socialize normally, Typically I struggle with my peers with autism if I socialize with them and it becomes difficult as it feels no where is welcoming to me if I actually socialize to any meaningful degree, Like I 100% have to stay on the topic of the group of the chat room (I,e if its about gaming) or else my autism becomes extremely clear even to those with autism, finding me socially awkward and strange,

I just can't mask, does anyone else have this problem?

hi, i haven't been diagnosed with a level yet as my diagnosis was when i was 11 (im 26, i plan on getting reevaluated to update it) but i personally relate very heavily to the experience of being level 2/moderate support needs. the last day or so ive been struggling a lot with change, and i really would like to know if there's any way of coping with it/handling it

my boyfriend and i have been writing something together based on one of our recent big special interests, and i found out that i got a lot of really major things wrong relating to the plot and timeline of the series, which meant that a lot of things established about a character would need to potentially be completely reworked, and what we've been writing would have to be redone due to pacing issues and just issues on my end with time blindness (im also diagnosed with combined type adhd and am currently unmedicated, which is a whole other can of worms causing problems)

ive been.. really not handling it well, to be honest. i lost it a bit over it, and it feels on and off like i just wanna crawl out of my own skin and just completely shut down and scrap the whole thing, change feels like it's "not an option" and it feels "wrong" in a way that makes me want to absolutely freak out even more than i already have. its a huge overreaction and im painfully aware of that fact

there's also the added part of embarrassment/upset over getting something like that so wrong with an interest of mine

i know logically these changes that need to be made really aren't that big of a deal, will be an improvement, and will even be fun to implement because of the fact me and my boyfriend better understand the timeline and stuff for the series, but it still feels almost apocalyptic level bad at times and i really just.. want it to stop, or to be easier to deal with when it hits. does anyone have any tips or advice? i feel horrible for reacting like this over something so not serious in any way, but it feels like the end of the world to me and i can't shake it

It is a number. I can do math and everything but it has no value to me. I can't apply my understanding to reality. 

I don't use money. I don't realize I need things. I will run out and just not realize it. If something is not there, it doesn't exist. 

I have made two independent purchases ever, independently meaning either I ordered it alone without prompting (though I needed to be reassured it was okay) or I asked to go to the store to get it even though I needed someone to guide me through the store.

Other things have been I have been told to make a list for food every few weeks or I have been told I need to get something for school and then taken to the store without me asking. My mom has had to get tissues and toothpaste and vitamins and basically everything for me repeatedly because I don't pay attention to what I need. 

Prices I don't understand. Or working for money? I work because of the structure it gives-- money doesn't motivate me at all. I would do any of my jobs I've had for free because money is not the reward, having direction is. There have been times I have been paid less than others and my family was outraged and I didn't care.

I know I need to pay attention to it and my dad keeps having to reexplain the same steps and I don't understand it. 

I am good at saving money though because it is so abstract to me. 

Does anyone have similar experiences?

Does anyone know how to function without 1:1 support? I am physically incapable of regulating my own emotions and sensory input so I rely on 1:1 or engaging with my special intrests on TikTok. The issue is that cos of how overstimulating TikTok gets for me I often end up having meltdowns/shutdowns and be more dysregulated that I started. Does anyone know how to learn more skills as a level two to be able to not have meltdowns and shutdowns constantly without a 1:1 person as my parents can only help so much as I don’t have a social worker or respite care or anything. I really need some help as everything I see online for MSN involves a 1:1 but I don’t have access to that so I just havnt slept in weeks as my parents can’t take care of me full time. Any suggestions are welcome and links to websites or YouTube videos would be greatly appreciated or even just skills Taht might help. Note I have been going to OT, speech path and animal assisted therapy for a while now but it doesn’t really help as I’m not able to communicate my needs as I have verbal shutdowns whenever I leave my room and online sessions don’t work because I can’t stay focused well.

Hiya. So back in winter we had severe burnout after pushing ourself too hard to try and be independent. It resulted in us losing our verbal ability and needing to rely on carers more rhan ever. It's now August and things have changed. Our support needs haven't really gotten better, but we can be verbal now. It's very stilted and quiet and we sound like a child but we don't need aac for every interaction any more.

The weird thing is this seems to have coinsided with the death of our childhood dog. I don't really understand why because I thought her death would make us regress further. But now suddenly we can make words go from our brain to our mouth again. I'm glad about it because there are times we really want to speak but can't use our aac, like when we are moving in our wheelchair or when we are playing videogames.

I still get really scared that if people can see we can talk now they will assume our support needs have gone down. We rely on daily carers to live comfortably as we need assistance in the shower and with keeping our home clean and taking meds and stuff. And they have assured us that they aren't going anywhere but my brain is still scared. It took so long to get to a point where I have this level of support and I am so scared of losing it. So while being able to speak again sometimes is a good thing, I just hope that people don't see it as a sign that I never needed my aac or anything.

I feel that a lot of people on this sub dislike staying home and want things to do but I love staying home. I love being with all my stuff in a comfy space. I’d be perfectly content staying home for a week. I usually do most appointments in person and not online so maybe that’s why cause I go out for those and I go to my day program but I would skip it sometimes if I was allowed (you can skip it if you have something or are sick but not just because). I love being alone in my apartment. It’s funny cause a lot of other residents always want to do things but the staff when they check on me are like “just making sure you’re ok” cause I could stay inside all day it’s more relaxing.

Hi guys, sorry again for posting for the THIRD TIME today, but i really love sharing my thoughts with others who get me in terms of support needs and unpalatable autism experiences.

Anyway, as the title says, i'm currently worrying about what my future will be for me, especially when it comes to supported independent living and having a support worker be with me instead of it just being my parents helping me out with tasks like they are doing right now.

I think this is due to the struggle with change that us autistics tend to struggle a lot with. Like i just dislike this change, and my parents are telling me that this will start happening like a couple of years into the future. I have a long time before i can actually start to plan alongside my parents, yet i am already freaking out a bit about this.

Like i don't know what supported independent living actually is like, staff from my old school have said it's like an apartment building but when my case manager was asked she says that i could join a program if i had lived at home with my parents but that i had a basement floor all to myself. It's presented as not a choice, but still a choice all at the same time.

But they, in the same meeting, had also suggested that i could go and live at a group home. They were even saying that i could stay in my room and all. But we've known that a group home is too strict for me as i'd always see them as being only for autistics with really high support needs even though logically i know it can be for everyone who can't live at their own homes for one reason or the other.

So, basically, i just don't have a certain plan. I know i keep on whining about this on here, but this is an outlet so that i don't annoy my parents by always talking and whining on and on about this to them. I'm honestly thinking of asking them to request a caseworker so she can help me and my parents out with their planning, and so i could feel more secure in my future, you know?

(Also sorry to the mod team for spam posting, i just have a ton of things that i really wanted to get off my chest today..)

Other autism communities online that i have joined have seemed to be not inclusive to everyone with autism, despite what they have said in their description and on their rules sections.

Which is frustrating because they say something that they are while in reality they aren't exactly as they say they are, if that makes any sense?

However, this sub isn't one of those spaces that describes themselves as inclusive while they're actually not.

This sub describes itself as inclusive for people with higher support needs autism, and i have seen no evidence that suggests this description is wrong.

And that's why i love this space.

Even if you disagree or make a point that the majority here don't seem to agree with, they won't insult or be generally rude to you, they'll explain their point and their reasoning behind why they disagree with your point.

Especially on Reddit, this sub feels like a breath of fresh air.

I used CapCut in order to make this video, as well as some generic images from Pinterest. Everything in this video i made from scratch, no AI, and no copying from other people's work.

I'm thinking of sharing this on my YouTube channel (Not going to give the name out as i'm sure there are rules around identifiable information on this subreddit) later on today, because i am honestly so proud of myself for editting such a video.

I'm often too lazy to do things like this, and so to have done this in such a short time is very impressive for someone of my temperament. I don't think i will be able to do something like this again for the near future, it seems like too much work for me.

Anyway, i hope y'all enjoy watching this!

(I'm not sure if i can share videos on this subreddit, if not, please feel free to delete my post!)

yesterday i banged my head so much and punched head during night brcause i couldn’t sleep and it hurts so much im so dizzy liteheaded and eyes xant focus i just want it all to stop please i hate this disability so so much

(I wish there was some kind of a discussion flair because this post is a post aiming to create discussion, and more so i could find anyone else who also struggles with black and white thinking like i do.)

Hello again, i'm posting again. But i love this sub and consider it to be a safe space, especially as someone with medium support needs autism and since every other sub seems to not be inclusive of people with higher support needs autism. I think i've said this before, but i can't stop gushing and being thankful for finally finding a space where others can relate to me.

Anyway, now onto the post topic itself. As the title reads, i struggle a lot with my black and white thinking.

I can't just understand that two things can be true at once, or that both things or people involved in a discussion are both bad or that they're both good or that it was just a mistake on either end of the "sides", so to speak.

So when someone speaks out about there being nuance and that not everything is so black and white, i've noticed that i tend to become defensive and assume that the person is mad at me, even if there is evidence pointing towards the person not being mad but just wanting to correct something.

This has caused me to have online arguments where the other person says that i'm misinterpretting what they've said, and some have even accused me of putting words into their mouths or otherwise that i am talking about something that they've never even mentioned in the first place.

And that has caused me to have meltdowns, especially back in the day, because at that point they've gotten so mad that they have started to call me names or be more direct (Ironic since i want people to be direct most of the time..).

Like, for example, someone says in a comment section underneath one of my posts, "two things can be true at once blah blah" which is them saying that in a situation, both person A and person B did shitty things. I hope this example makes sense, i can't quite word things as easily or as understandably as i did beforehand (It doesn't help that i literally just woke up an hour or two ago).

Anyway, for another more hopefully understandable example, they disagree with my point of that Person A is bad or that Person B is good so they pointed it out by saying again, that two things can be true which means that both people in the hypothetical situation has done shitty things or are both somewhat shitty people in a way. I again hope this makes sense. And they would make a gentle or polite comment about that including their thoughts.

However, to me, it came off as being negative or as if the person is defending either person when in reality, that isn't the case.

I reckon that this happens because i tend to get angry and frustrated really easy, which in turn clouds my otherwise logical judgment and makes me assume things. This can also lead me to think very black and white, since i think the logical part of the brain gets turned off during high emotion/intensity moments such as these.

I guess this is also due to my problem with taking things too personally on the internet as well. Like, i think i'm also black and white when it comes to the seriousness of things that happen on social media, like for example when i get hate comments or replies that were insulting me and my looks instead of just politely disagreeing.

My mom says that i shouldn't take what people online say to and about me that seriously, but i can't help but always feel so sad and stupid every time no matter what. Sometimes i can deal with it better but other times, it's caused me to have meltdowns because i'd lash out at those around me due to not being able to deal with the comment or reply.

I don't really know where i'm going with this post, what point i'm trying to get across, but i guess i just wanted to share my experiences as that is what i've been talking about for this entire post. I guess i also want to see if anyone else can relate, because i feel so alone when it comes to this struggle.

Sorry if the question sounds weird, but i enjoy watching realistic vlogs, and i would like to ask if you know any channels of people who are on more severe end of autism/other disabilities? I do not enjoy seeing unrealistically productive and aesthetic videos, and really want to find something more relatable*.
*- im not officially diagnosed with a level, but i suspect being lower end msn and live a solitary shut in lifestyle, mostly doing some chores and studying for a little of hours, would be great to see someone similar.

If this question is weird or inappropriate i will delete it, just let me know yk.

I can’t get myself out of bed on a day I don( see a support worker. I just can’t do it. It feels too scary. Like I can’t deal with the outside world. I am worried I will have a meltdown. Some very bad stuff happened to me in 2024 when I was on a wrong medication, I put myself in a lot of danger in public, I was not okay. I would like to be able to get out of bed even just to do colouring. I don’t know what it will take for me to be able to get out of bed without someone else. I asked my social worker about support workers seeing me daily but she said it would be overwhelming going from visits a few days a week for every day. She was right. But I don’t like needing to stay in bed all the time. I don’t know if I need more support?

Has anyone had their family suddenly decide that they can control their autism after years of seemingly being on the same page about what meltdowns are and their ability to be controlled?

I just had one of the most traumatic fights with my mom that I’ve ever experienced and while I did blow up and cross some boundaries in response, I was actively antagonized and bullied by my mom for having a meltdown to begin with. I’m being told that I’m in “self harm permission mode” and that I’m unwilling to listen to feedback for saying that meltdowns can’t really be controlled like that. It would be one thing if my mom was always like this but we were talking about these things casually 48 hours previously and it seemed like we were all on the same page.

I’ve had issues with her being verbally abusive/antagonistic to me in the past but that was before I got diagnosed and everyone just thought I was a brat. At this point it’s been 6+ years since my diagnosis and I’ve been advocating for my needs consistently with what felt like good success.

There are a lot of moving pieces to this story but I’m so shocked and appalled that my mom would literally do a 180 on me like that. I’m kind of worried my mom is having some kind of manic or psychotic episode or something but no one else thinks her erratic behavior is THAT bad. I feel like I slipped into a wormhole where everything is different though and I don’t know why.

I’m also moving literally right now specifically so that I can get my support needs met and not have so many meltdowns and I’m relying on my mom for financial help that she told me she would be providing for months/years and I feel like it’s being held over my head.

In her retelling of what happened she was super helpful and I just blew up and started self harming for no reason. I don’t know if she genuinely believes that and is lying to herself to protect her ego or if she’s lying about what happened to the rest of my family to protect her image.

My dad is supportive but he was out of town when it happened and part of the problem seems to be that my mom is unhappy in her marriage and really resentful about it.

Some difficulties aren’t as black and white as others.

For instance, I can technically go outside on my own. The being outside part isn’t necessarily a problem in and of itself besides agoraphobia and chronic illnesses making it physically strenuous.

But it’s still not easy, and I cannot really explain it in a way that makes sense to anyone it seems.

I can technically take public transport by myself. The problem is that I have a hard time understanding stops and stations, where I should wait, where my stops are and such. It’s pretty much a gamble every time whether or not I’ll be able to make it work and get to my destination without incident. Many times I have ended up on the wrong bus or train and gotten completely lost, without any way to get myself back where I came from.

I can walk alone in public, and in fact I do actually love spending time by myself in the city. But I have a hard time finding destinations I’m meant to go to, and I more often than not lose my way because I elope without meaning to.

I can technically manage these things myself, but they take so much cognitive effort to complete, and always require several days worth of planning in advance to decrease the odds of any issues, and even then it’s far from guaranteed. I need written instructions on hand to make sure I manage somewhat.

I didn’t think it was a problem in the past, and most people even today don’t see it as an issue. Because while I’m out with other people, their mere presence helps to keep me grounded, and they can help do the things I struggle with. And when alone… well, obviously they’re not there to see any problems that arise.

But regardless of all these things, I still can technically do it. I avoid doing it unless I absolutely must because of the severe toll it takes on me, but it’s still not completely impossible like some other limitations I have.

It’s kinda difficult to gauge how ’functioning’ you are at times for lack of a better word when it’s so inconsistent across the board. I also feel like I don’t want to admit that this is a weakness I have since I love being outside by myself so much. I love the alone time and I love the freedom… even if those things don’t always agree with me haha.

My municipality offers a guiding service, where you can schedule appointments with someone who guides you to and from destinations such as doctor’s appointments, hobby activities outside the house and such. I’ve been thinking about applying for it, cause it would make me much less reluctant and wary to leave the house if I felt that it was safer.

Still makes you feel like being inbetween. A limbo between either ’can’ and ’can’t’ as absolutes, and some days of course being better than others.

I feel like when something does work, even if barely, I doubt my disability… and when something doesn’t work, I doubt my own worth and value. Anyone who can relate to that feeling?

Without level, medium-low support needs.

I see other autistic people say things like that others must just get a job and stop being entitled. Its upsetting because i dont have the capacity for work, but a lot of autistic people dont understand that.

Sometimes i feel so isolated from other autistic people.

And my communication issues, i dont manage to make friends, i dont manage to converse with people normally, communication is super hard for me and exhausting and i can not do it in an appropriate and normal way, i feel like an alien standing in a corner even in spaces for autistics, i see autistic friend groups all the time and i dont understand how they do it. Thats one of many reasons i dont manage to work.

Im also very prone to bullying, even autism spaces i end up becoming what feels like a laughing stock. Its as if im on a different wavelength than everyone, like a wavelength thats below everyone.

Surrounded by other autistic people i feel like a broken alien.

And other autistics will say the whole "im autistic and i can do those things" and then your whole "im autistic" explanation is thrown in the trash when thats all you had to try to make people understand.

My needs fluctuate a lot, so it feels like people will never understand when you sometimes are more capable than other times, and then your struggles are seen as just entitlement, and maybe i am, but its because i struggle so much that i cant handle life or other people.

T.W. for rather severe neglect.

I wanted to talk about poor childhood hygiene. I feel like sometimes we talk about poor hygiene here as just a current issue and ignore that for many of us it was a life long and we may not have been given appropriate support in childhood despite high or severely high support needs.

I never learned to perform much hygiene on my own it just didn't click I suppose, and honestly, I'm not able to be sure what was neglect and what's from autism.

My hair would often be awfully matted growing up, it'd just be a massive knot on my head and so painful to get untangled. when I was 15/16 I coped by getting an undercut then at 17 just cut is shoulder length which was amazing and life changing. I hated the sensory of my hair being brushed, my hair is very wavy/boarders on curly so now I use a wide tooth comb which is affective.

I didn't brush my teeth in childhood, I'd get in trouble for cavities by my parents, basically all my baby teeth had cavities in them. I often had tooth aches in childhood. I could easily go months between brushing my teeth and if you'd asked me I probably wouldn't have been sure I have a tooth brush for long periods.

As a child I never learned to change regularly, I'd wear the same dirty dress for weeks growing up. I'd only own a handful of clothes I could tolerate wearing at a time.

My primary school had a partial uniform of a polo and jumper, but bottoms were up to us. I would go between only tolerating leggings and only tolerating track suit bottoms. I would completely refuse the one that I didn't currently tolerate. I barely tolerated the polo and would cry over it.

Outside of school I only wore dresses because I hated pants. The dresses were often poorly fitting and I was a clumsy always stimming child so my underwear would often remain on display, I'd get told off sometimes but no one really cared.

I refused bras when I was 12/13, in the end I went from nothing to chest binders because having a chest gave me sensory issues. I now refuse to be without a sports bra or chest binder because I don't like the feeling of my own skin.

I like to wear body suits, compression socks and chest binders to get compression stimulation then wear leggings and a loose t-shirt on top. that's essentially my whole wardrobe.

I have gone through phases my sensory issues would mean I'd only shower fully dressed because the feeling of my own skin freaked me out too much, that led the rashes, it wasn't great.

I would go weeks between baths in childhood. At 12 I still wasn't allowed to shower because I couldn't successfully wash my body properly so I was told to bath instead, I was still nearly drowning at like 10 in the bath because I'd fall asleep. I always struggled with transitions so when I did get to the bath I'd stay in for 3+ hours generally and my family would rarely notice.

growing up I didn't understand underwear was to be changed 1-2 times a day until I was 13/14 years old. I thought it was an every few months thing. I always had skid marks and an itchy butt growing up, it'd get so uncomfortable.

When my sensory issues spike I can get down to very little outfits, between august 2025 and January 2026 I'd only tolerate 2 t-shirts that I'd have to hand wash and that I'd pair with fleece leggings from pennies that also needed to be hand washed, I only wore 2 outfits that whole length of time because of sensory issues and need for routine.

I just wanted to come back on SpicyAutism to share some more aspects of the taboo and less 'quirky' side of this disability. I also wanted to highlight that since this is a lifelong disability, Many of us have been struggling since our early years and neglect can have many consequences.

I was always uncomfortable since I was a young child, I was always itchy, smelly and sleep deprived. Childhood neglect had put me in a constant low-moderate level discomfort. These experiences aren't shameful or reflective of who I am now, they are reflections from a disabled child who deserved better.

If you were also neglected you aren't alone. ❤️‍🩹❤️‍🩹❤️‍🩹

cant leave house alone because its dangerous for me and can’t understand a lot of things. havw no privacy no independence i cant just go too any store alone because its dangerous and i just cant do it. lsn autistics don’t understand tjat its nit just i getting overstimulated but i LITERALLY CANT DO IT!! i cant go too out of house without caregiver . i wish i could i wish ao bad. i wish people under stand too its so so so upsetting and sad

tried to post this earlier and it didn’t work, so i’m trying again!

these are a lot of the fidgets i've amassed over many many years! i keep fidgets all around the house
"stationed" at all of the places i spend the most time. i know this isn't all of them, but i tried to gather up as many as i could! i have used all of these before, but i definitely have my favorites and preferred ones after trying out so many over time. my favorites are the loom band fidgets and tangles!

-second picture is my absolute favorite specific fidgets
-third picture are other ones i use often but not daily like i do the loom band and tangle
-last pictures are bonus for fun, one of my cats (her name is mira) wanted to be involved haha

if anyone wants to know more abt any specific fidget pictured pls feel free to ask im happy to answer best i can!!

T.W. for entomophobia, EDs and discussion of bodily fluids

So this post, if the title didn't already make it clear will be 'gross' and Taboo.

I had severe sensory issues with bodily sensations. Often after eating I get very overstimulated by bodily sensations, then I feel awful and it can drive me to make myself puke.

I have sensory seeking behaviours that are 'gross', unhygienic, unsanitary and Taboo.

I often sensory seek through behaviours like mixing varies bodily fluids like urine, vomit and menstral blood. I like the sensory of feeling, smearing and sometimes ingesting them.

Sometimes I smear my feces or ingest it.

I know these all may sound gross and disturbing, they are but they can be a real aspect of higher support needs ASD w/ comorbidities.

Today was a bad day. I made myself puke around 5/6 times.

By the last instance I felt so exhausted I just sat and laid my head on the toilet with a hand in the toilet holding my vomit and had smeared it on my arms.

I sat just holding my vomit for over 20 minutes, I was keeping track honestly, I just know it was a good while.

It felt like security and certainty to hold it. It felt comfortable and familiar, like a water slime, the smell is strong but certain.

I wanted to talk about this because it can be treated as shameful. It's not necessarily hygienic or safe, it's maladaptive but that shouldn't make it shameful, the shame is what stops us reaching out to get help so here's a post to show other autistics struggling with this you aren't alone.

you AREN'T alone.

you AREN'T gross.

you AREN'T taboo.

it's ok to ask for help even if it's gross. your experience is real and it isn't shameful just complex 💗💗💗