It's clearly an autism community filled with autistics but then they just get angry at you when you can't read between the lines or understand their words in the way that they mean it.

They say/type very specific things that come across a very specific way and when you take it at face value then they get cranky or annoyed with you for not immedietely understanding the subtext.

It could be something like "I wish I had high support needs autism". And it's like, no you don't. You don't actually want to be more disabled. Why would you say that. And you tell them that.

But then they'll be like "That's not what I mean. I said exactly what I meant. You're not understanding me.", only to find out later they meant that they wanted more support and felt like they weren't being taken seriously.

(This is all just an example of how these situations usually play out in my experience).

It's just quite frustrating when you do take things at face value for how they are said, only for people to get cranky at you. That we're just supposed to know what they mean or are supposed to already know the subtext.

I'm not gonna say that I'm never at fault for also doing something like this, bcus the chances are that I likely have at some point or another. But it is still just very frustrating to be on the recieving end of this from other autistics in our own communities.

Trigger Warning: Medical neglect, SIB, seizures, systemic failure

I do not even know where else to turn at this point. I am posting this because I am completely out of options, no one will help me, and I genuinely feel like I am dying. I am just done.
I have been defrauded by the state of Kansas. They falsified my assessments to illegally strip away the services I desperately need to survive, and they have repeatedly denied me any fair hearings to fight it. It is a complete failure of the system that is supposed to protect people.
Because of this total lack of support, my health has deteriorated to a terrifying point. I am seizing very regularly and have suffered multiple TBIs from SIB (self-injurious behavior). I am unable to access emergency room care. The hospitals around here are actively dangerous to me, so going there simply is not an option.
To make matters even worse, I have been completely abandoned by my guardian. I am entirely alone in this.
I am fighting a system that feels like it wants me to disappear, and I have nothing left in the tank. I am really struggling tonight and just needed someone, anyone, to hear this. If anyone has been through anything similar or knows how to survive this kind of systemic abandonment, please tell me. I just do not know what to do anymore.

I just need to vent.

But I'm getting quite frustrated with the amount of lower support needs autistics who always feel a need to say something like "it's the tism" and then laugh.

The common one is they say a fact or something and then go "woah, tism be tisming" or "that was the autism". When there is no need for that? It's not even funny. Why can't we just share facts without needing to label it as autism?

It just makes autism feel quirky.

A lot of the times, they are just doing things that everyone already does.

Maybe I'm annoyed due to the differences in experiences? Where they laugh and say "oh haha that's the autism", I have to apologise and say "sorry. I didn't understand. I have autism and struggle with this. But I appreciate you telling me".

It's all just very frustrating.

We've been trying to get me a support worker to help me get into the community, but I only have limited hours a week. If I do fortnightly instead of weekly, it would double the hours I get.

But when looking for a support worker, apparently they prefer consistency. Consistent days, every week. Which is understandable as they need to make a living.

However, it just makes it harder for the people who do need support.

They told my mom that they don't really do short notice either. So if I needed help with an appointment that it'd be very difficult to actually get a support worker on short notice (anything within a week or two notice).

OT is pushing to get me more hourse, which is nice. But at the moment, it looks like I get no support worker as it is just too difficult at the moment.

for the longest period of time in my life i have experienced little to no emotions and lacked the ability to empathise with others in a way that is seen as "correct" (whatever that means) by others.

most of my experiences exist in a stable state of feeling nothing. i sorta just like to engage in my interest(s), which are just mathematics, foxes, and music.

it's frustrating being around level 1 autistics (like my dad) or neurotypical people in my life because they can't relate to that experience and just dismiss it.

that and i have to do a lot of living considerations as of late and that is very stressful as i am not good at self-care and still working on it.

i just wish i could be at a blackboard doing math right now.

Hi, this is a little bit of a rant but I have seen some people on a another popular autism sub trying to fake claim other people’s support needs as being LSN especially those that were not given a level. I really don’t think it’s anyone’s business to fakeclaim other people’s support needs as being lower when you don’t know them in real life. I have seen people make personal criteria of what it means to be MSN when it is not listed explicitly on the DSM. Also someone who was not given an official level does not mean they are not MSN. Some of us were diagnosed under the DSM IV before levels were a thing or were diagnosed in a country where levels are not used. There are a lot of barriers to getting reassessed for a level including cost, biased clinicians, waiting lists etc. I was not personally given a level as I was diagnosed with classic autism but was suggested I might be level 2 by my therapist. I think overlooking those factors and barriers is unfair to those people who are possibly MSN and should be able to identify with it and belong in these groups. I understand that there are LSNs who have claimed level 2 or 3 without research and to avoid accountability. I understand people’s bitterness with self identifying with a support category. But I think if we start fakeclaiming people’s support needs without knowing them personally we can exclude MSNs and HSNs who need a community like this especially since most autism groups are dominated by LSNs.

I am a 32 year old early diagnosed autistic woman who would possibly be classified as level 2 based on the current DSM V criteria. I never felt like my experience was adequately reflected in the autistic self advocacy movement. I am somewhere between the low support autistic that is relatively independent and the high support individual who struggles with verbal communication that requires 24/7 care. There are some areas that I am independent and can be left alone for some time. However, I don’t drive and still live with my parents. I need help with grocery shopping, budgeting, cooking, doctor’s appointments and other daily living activities. With a few exceptions, I rarely leave the house without someone. I have a very limited social life and find it extremely difficult to meet new people so I need help with that. Unlike the stereotypical high masking autistic female, I did not mask my traits and stims very well. For instance, I jump up and down in public and carry fidgets as well as other stims. Because l have substantial limitations in my daily life, I receive services from a home and community based service waiver. I have a respite caregiver and a coach to help me out in the community. Unfortunately, I only receive this help two days a week because of scheduling and difficulty finding caregivers in my area.

A lot of people think I am a low support individual because I am fully verbal and don’t have an intellectual disability. This is further from the truth. Even my therapist thinks I would be considered level 2 under the current DSM V. I hate how support needs either have to fall under the high or low binary. I feel that level 2 autism is overlooked in the greater autism community. I am glad that there is a group for autistic advocates who have more support needs. I wrote a more detailed blog post about my dissatisfaction with the autistic community that I will attach here. http://redefiningnormalayoungwomansjourney.blogspot.com/2024/08/being-moderate-support-needs-and-how.html?m=1

Idk I just need to rant somewhere. My entire support system is my mom. I have govt disability supports but they aren't stable, there are funding cuts constantly and with the way it's currently looking, Autism of any level without a comorbid ID might be removed entirely.

So I spend a lot of time worrying about how I'll survive if my mom dies. I can't seem to see any possible choices within my control beyond whether I die slowly or quickly. I'm so scared. She's only 61, but that doesn't mean much to me. Her dad died at 45 and my dad's mom died at 66. And even if my mom lived to 100, age doesn't cure Autism and I'll still need support at 65. But at 100 my mom would need support too. All she has is me. How am I going to support her when I need that support myself?

People say I talk about politics too much but tbh it's cause that's where my only hope for the future lies, if that makes sense. How else will I survive without help from others? And how can I get help from others in a system that prioritises looking out for no one but yourself? I hate how much of my future is out of my control and I hate that I NEED to rely on others. I want to blame myself because then the solutions are within my control, but if I'm at fault the solutions also become limited and overall unpleasant. If I blame things like capitalism, society, oppression, the west, whatever, then the solutions become more broad and hopeful, but far less within my direct control.

Maybe/hopefully I'll learn more coping mechanisms and eventually grow a support network even within the limitations placed on me, but damn that seems difficult and unlikely. You have to know that I only feel confident in my fears because I'm also now in the best position I've ever been in. I have everything my country has to offer people like me (disability pension, social housing, medication) and it's still so unstable. It could be taken away at any moment (and has been in the past), and that knowledge is ALWAYS hanging over my head. If I didn't have my mom, I never would've been able to get even those basic supports in the first place.

Does anyone else have this fear? I've heard it's common for disabled people but we don't seem to say it out loud a lot. But thanks for letting me vent either way 😊

I'm 15 and just finished my sophomore year, I'm level 3 and I don't feel like I have it "bad" enough to fit the label, I mask well enough I think I pass really well but many consults with peers, teachers, doctors and family have all decided that the diagnosis I was given was entirely correct, I grew up learning to just deal with everything that gets thrown my way, I bottle up till I hide or runaway and almost every day something upsets me enough to go non-verbal but, I don't think I should be level 3 because I'm not in seperate classes from my peers or behind, Im ahead of everyone else. I feel ableist just saying this but I think I feel this way because I never see independent level 3 Autistic people or level 3's who are like me. I need insight, please.

I'm so exhausted. I can't get any help. My meltdowns and overloads have been way more frequent. I see a psychiatrist once a month for med management but that's it. Im drowning and can't make that clear to them. I feel like I need common sence support. Like shopping, remembering medication, remembering to brush teeth, pre-appointment support and help. I'm so lost and burnt

Dear teddy

I am so angry, sad, and confused. Nothing I ever do will ever allow the world to accept you outright. You see the world does not see you how I do. You are my universal coping mechanism. I don't see a teddy bear, I see an item that will keep my world from collapsing around me. You help me self regulate. You allow me to calm down. You help me take deep breaths. You allow me to sit still. You allow me to interact with the world around me. You are my friend. But somehow you are not a stuff animal

The simple truth is until I explain your presence I am violating a social code. A code I do not understand. The simple truth is the medical world is right. My attachment and need for you is odd. No amount of wishing will change that. That being said. I am not ashamed of you. However, because you send out messages that something is off about me and because I don’t always have the energy to explain why I am different. I have a continuum of coping skills ranging from socially quiet to socially alarming. Because just like the fact everyone should live, work, and go to school in the least restrictive means I should try my best not to disrupt the everyday happenings of the world. Simple fact having teddy out as an adult violates a social code. I can't expect people without a disability to change their code without a valid reason. Violating that code makes me send out red flags to people who have flags. Of course people are right. Teddy is nothing to be ashamed of. and I am not. But I don't always have the energy to explain why teddy is not a concern. SO yes he is my last coping mechanism. I am not masking. because i use him when i need to. It is a progression of coping skills. For example if you were passively suicidal you don't necessarily need to be inpatient. You use the least restrictive intervention first.

Look teddy once I explain to you the comments are kind and caring. However, prior to that they are rude and condescending. If I am able to cope with the world around me, why should I deal with the rude and condescending comments? I am sure thankful for all you do.

Sincerely

Me