#mhsn autistic

[crippy-tangerine]

Not being able to describe/identify/communicate our emotions “normally” makes our therapy/medical check-ins so hard… And just. Frustrating, really.?

For a start!! “How are you doing this week?” feels impossible to answer. Like… It does not feel socially acceptable to respond with: “I feel like I am watching myself bury the sun beneath the dirt in third person- and as each handful of soil slowly extinguishes its light, my chest caves inwards and my blood seeps out of my pores and mixes with the earth. And my hands won’t stop patting down the blood-soaked earth over the star that I’ve just killed.”..???? Like yeah, don’t think that’s a good answer to give, especially when the person asking doesn’t actually care.?? But like… We don’t know how to translate the feelings we have into quick, one-word answers. Or even just a “normal” sentence. We just sound so damn emo when we write stuff (/lighthearted). And we need days/weeks/months (or sometimes years!!) to work out how we feel about a situation and how we want to respond to it. Which means our (lack of) response is not appropriate…

Emotions feel like music, so to then have people expect us to communicate them all with a single word.??? It’s not doable for us. Let alone when the response is wanted in a matter of seconds. So we end up saying “I don’t know” 95% of the time (because we don’t know!!) and we don’t communicate anything at all. The other 5% of the time we just guess and say something like “depressed” or “sad” or “anxious”. Because we don’t know any better words to describe the feeling of your world ending by your own hand.???

It’s extra difficult because we need AAC & simple signs/gestures to communicate anything. So we don’t even say “I don’t know”- we either have to put that into our phone, or just shrug.?? Interactions with us in-person are very one-sided (which often isn’t handled well by anyone involved). We don’t do well with conversations. As you can probably tell.!! Thanks, autism…. (/sarcasm).

TLDR: having a “nonverbal-autism-problems” moment!! This emo autistic struggles to not be emo & autistic- and fails!!! WOMP WOMPPPP.

(We don’t want “advice” on communicating “better”, we are already at peak performance for us. Unsolicited advice is NOT a slay!!!)

[autisticdreamdrop]

new video-!! it’s autism related and we worked hard of this. we felt like we had more things we wanted to say and we have so many ideas of stuff to make videos about its a bit overwhelming lol

please like and comment (pls comment) and subscribe if you want we don’t have a schedule but they’ll come we’ll be working on videos

[crippy-tangerine]

Literally. We get disability benefits because we can’t work & need substantial supports, and you have to update the government branch that handles these benefits if you have any change in your circumstances, right? so we had to update them about our disability worsening- specifically our mobility leaving us bedbound & losing all ability to verbally talk. Do you want to know how this governmental branch (that deals with disabled people. cannot emphasise that enough- their whole thing is that they deal with disabled people and assess levels of disability) requires you to update them?

You phone them. Their main mode of contact is phone calls. As in, you, the disabled person, have to call them up and have a lengthy & often complex conversation about how disabled you are. They graciously (/very sarcastic) allow you to have a carer/relative on the line to help you, but the carers/relatives aren’t allowed to call on your behalf without you there to give input. And we obviously can’t have a phone conversation with them, because we can’t talk… which also means a carer calling for us won’t work because there’s no way to prove we are there as well- because, again, it’s a phone call that relies on verbal speech??

So on the letters they send out there’s this little note on the last page that says you can also write them a physical letter, and send them all the proof they want by post. Which… involves going to a postbox. You know, something that famously involves being able to go outside and mobilise far enough & long enough to get to a postbox.???

Thankfully we have someone who can post it for us! But that’s not an option for some disabled people!! The process to get these benefits is already complex, confusing, time consuming, and honestly really invasive & dehumanising. It’s just salt in the wound to then make the system inaccessible, so you can’t even do what they want in order to keep the benefits for any length of time.???

Even the systems that are supposedly there specifically for disabled people are inaccessible by design. Spaces that are meant to be there for everyone are not designed with disabled folk in mind. Healthcare is inaccessible. Social/outdoor spaces are also largely inaccessible. Restaurants, bars, clubs, pubs etc. are as well. Shops are often inaccessible (yes, even bigger chain shops). There are minimal (if any) recreational activities that have adaptations for disabled people so that we can join in too. Accessing supports for disability is made intentionally difficult- and seeking the supports you need to survive also means that societally you are treated as a leech that just takes and takes and takes. But calling any of this out is seen as you being “too needy”, or “demanding”, or “asking for too much”. All the structures in place for people do not actually include disabled people. We were not in mind when these things were made- or worse- we were in mind, and were deliberately left out.

Every shop with steps to get in and no ramp, every restaurant that can’t/won’t cater to even common allergies, every service that requires verbal speech to access it, every medical setting with no hoists, every bar or club with strobing lights, every movie theatre that won’t offer subtitles, every governmental speech/conference that doesn’t have a sign language interpreter…..

Dunno, it’d just be really good if people could at least do a thought exercise every once in a while and consider: “is this place/experience something I could access if I was in a wheelchair? Could I have gone to this venue if I had fatigue and needed a space to sit down & rest? Would I be able to go on this trip if I had speech/communication difficulties and need to use AAC? How much would I have liked this experience if I had to argue with the staff about access needs for an hour first?”.

Anyways. Ramble over. Good post from OP (/g).

(TLDR: society isn’t accessible, if you don’t get smacked in the face with that at every possible moment, that is (unfortunately) a privilege a lot of disabled people don’t have.)

generally i feel that people assume things are more accessible than they are. especially in medical settings. because like a hospital is where you would need to cater to people's health conditions right. so what do you mean that they can't accommodate allergies? a dr's office is where disabled people and people with chronic conditions go, so why aren't they wheelchair accessible? or as mentioned in an earlier reblog, why would they not have hoists for people. this is specifically the place where disabled people will need to go and go often right. this is the place that's meant to be able to cater to people with health conditions. except it's not, the ableism is baked into the system so regardless of how much sense it would make for a food venue to be able to handle food intolerances and allergies - they don't. they don't care, it's not been accounted for in the plan in the first place. they expect to deal with uncomplicated "normal" issues daily and see disabled people as some sort of annoying exception to manage on a case by case basis. and if every place, every venue, every service sees disabled people as an inconvenient exception, a small minority they don't have to implement accommodations and plan for, then the vast majority of public life is inaccessible for disabled people.

[crippy-tangerine]

Having unrealistic dreams (fantasies of being taken seriously by medical professionals),,,

[crippy-tangerine]

Memes by yours truly because we are. Not enjoying things right now.!

Guess who got diagnosed with FND today 🚶‍➡️. Hate it here.!

(Hey FND community….. Help….. Helpp….. Ahhhhhhh???!)

[crippy-tangerine]

Overwhelm & body is sleep deprived so probably bad wording. But. Tired people try argue with us about statements we make about what we can/can’t do. Us say “can’t cook” is not invitation to say “oh you could if you practice!!”. Like. No. Just said we can’t. You do not know anything about us and we not able say things good enough to explain. If we say not able do a thing. Can’t do the thing.

Is not self esteem issue, just disabled & not in denial about what “could” do. Stop try “be positive” because is not helpful is actually so annoying & rude.

Like yes technically have 2 arms so could physically put things in pan. Issue is with chronic pain & fatigue, weakness from hold things too long, executive function, dissociating & losing time/forgetting what doing, burning food because don’t understand timings, undercooking because take too long and frustrated so eat it raw, sensory issues mean burn self accident and not notice until body visible damaged, etc etc etc. Sure could put a thing in a pan but what is point in that if cannot prep the thing going in pan.? And then burn it anyway? And cause self pain & sensory issue that take longer recover from than actual cooking.?? Frustrate frustrate can’t explain everything and when try just get dismissed and so tiring omg just believe us when we say can’t do a thing. grrrrr.!!

“You can do it” u are wrong actually. So “can” u try listening to us.

[expressionless-fr]

Also having a high empathy does not make you a good person and vise versa. who tf cares about your empathy levels.

[Check image ALT]

There are many things wrong with this block of text. From saying autism has no downsides, to saying it makes you have more empathy so you’re trustworthy.

There are multiple things wrong with this so let’s break it down.

There ARE downsides of autism. As a higher support need’s individual, most days there’s more downsides then there are upsides. Yes, I wouldn’t have changed my autism (although some people would), yes, autism is sometimes great! But saying it has no downsides is downplaying the struggles that autistic people face, over and over again. From being assaulted, to ableist comments and treatments, to neglect and abuse, to support needs, to being killed. All of these are downsides of having autism and I’ve not even scratched the surface. You do NOT get to say that autism has no downsides.

The next thing, that autism makes you have more empathy. Are we forgetting about the people with no to low empathy? Are we forgetting about the autistics who experience no empathy due to their autism? Autism can make you hyper-empathic. But it can also make you Hypo-empathetic. There is no doubt about that.

Stop trying to erase that some people don’t experience the same things as you. Stop trying to downplay autism into this cutesy disorder. It’s not cool. Autism affects peoples lives, it makes their lives hard. It makes their lives miserable sometimes.

Autism has taken so much from me. From my ability to make friends, to my ability to effectively communicate. Autism HAS downsides and I can attest to that. Don’t erase the downsides.

[crippy-tangerine]

Really don’t see other autistic people talk much about temperature-related sensory differences beyond “the sun is too much sometimes”,, in any autistic spaces we’ve been in,,,? Which we are confused by, because it’s one of our most prominent autism-related sensory difficulties.? Aside from noise & smell hypersensitivity anyways... So we’re unsure if we’ve just missed all the conversations about it, or if other autistics don’t find it as difficult/debilitating so don’t feel the need to discuss? But we think the first option is much more likely, so hi autistic community, talk to us because we missed the earlier conversations 🥹💖. (This is not meant as a criticism of any autistic communities by the way, this is very /neutral, and just an observation really! Especially as we may just have forgotten the times people have discussed already!). Anyways, we’re just gonna ramble about our autism & temperature issues below, because it is an issue for us and we need to write things out to process them 🫡. This will be long, so TLDR is at the bottom!!

-> content warning for accidental self-injury, accidental self-neglect(?) of health needs, general disordered habits, and also specific disordered food issues. The food stuff isn’t related to our eating disorder(s) and is purely about temperature issues/stimming, but it’s still not exactly something we would encourage, so yes this is your warning!

Our autism has such a huge impact on our ability to feel temperature properly… we don’t seem to be able to process any temperature sensory input like others do.? For example- our living space feels like a totally different biome from the rest of the building 😭. People come into our space and reflexively go “oh, it is very cold in here-!”, and follow that up by asking if we are ok in this much cold and if we need help making it warmer. Which is very sweet and appreciated, but… It is deliberately this cold, because we have the heating turned completely off and usually have the windows wide open to keep it a nice “outside-during-winter” temperature. “Surely you are freezing?!” you may ask~ the answer is: “we probably are, but fuck it, we can’t tell!”.

We will sit in a T-shirt and shorts (maybe with socks on too?) when it is 7-11 degrees (Celsius, no idea what that is for you Americans sorry) and feel,,, fine.? Don’t even know. Can’t tell really. But we can definitely tell when we overheat, and that is the most evil sensory experience for us, so we are genuinely much more happy to sit in a close-to-freezing room than tolerate warmth 😭. Like we will just make our space the same temperature as the outside (unless it’s hot outside, in which case we will suffer and spend a lot of time taking freezing showers?).

It’s not even that we are immune to the cold or something, the body can definitely get very cold (shaking, blue-purple tinge to hands/feet/lips, goosebumps, hair standing on end, we lose mobility in our joints because they stiffen so much, etc.). We just…. Can’t process that sensory input and *feel cold* most of the time? We don’t have that “oh no I’m cold brrrrr!” reaction other people seem to have.?? And if we do have that reaction it’s more like “whoops, we have gone blue from the cold and didn’t notice, guess we better put a sweater on”.? We tend to not react to the cold until we’re at a point where we’re potentially making ourself ill from the cold, which probably isn’t very healthy, but.??? Cannot handle anything over mildly warm without discomfort. Would sooner freeze into a block of ice than be too hot (/hyperbole and /half-joking).

Heat sensitivity also means that we would rather eat absolutely everything cold. Like, everything. Cold soup, cold pizza, cold stir fry… We will eat bits of frozen foods while they are still frozen because the sensory experience is more fun when they’re icy.? Will happily chew on frozen chips, frozen fruit, frozen veggies, frozen pizza toppings… We were also That Child that would fish the ice cubes out of drinks in restaurants to crunch on 😟. (Would also eat the lemons out of everyone’s drinks, but that’s a whole other thing 😭). We will eat chilled foods raw, instead of cooking them (which is fine and safe for us as we only eat plant-based foods that aren’t dangerous when uncooked!! Please do not do this with stuff like raw meat 😭). Raw veggie spring rolls, cold pasta…. Even if it would probably taste better hot/warm to everybody else, we will try our hardest to eat it cold because we don’t like the heat. Cold coffee, cold tea (no, not even iced tea, we will just make green tea with cold water because hot liquids are not fun for us).

There have been days in the past where it’s been muggy and uncomfortably warm because there’s a thunderstorm coming, and when the rain started we would just go stand outside until we were Very Soggy because we would sooner deal with wet clothes all day than not be able to self-regulate in warm weather.?? And that’s saying something because wet clothes are a bad sensory experience 🫠.

But then on the other end of the spectrum, we have repeatedly burned our hands from accidentally touching stoves/oven shelves/fire and not realising.?? (Reason #62835 why we are not safe alone 😭 /lighthearted.)

Like, somehow, we can accidentally do ourself damage because of not feeling temperature properly (either from holding our hands into burning hot things, or from making ourselves feel ill from the cold).

And this isn’t to be all like “wowee autism makes us so silly and quirky teehee!!”, that’s not what we’re trying to say. We’re trying to say: we can’t act like a person if the temperature is bad, we eat foods raw/frozen that aren’t meant to be eaten like that, we border on making ourselves ill/actually make ourselves feel ill because of how cold we need to be to exist, we stop functioning whenever it’s even mildly hot outside, we are so dysregulated by heat that we just shut down and cannot get anything done properly without going into sensory overload. Like, we have such major issues with temperature because of our autism. We don’t remember ever seeing other autistics talk about the same/similar issues, and we don’t get why.? So like, if you’re also autistic, do you have similar issues with temperature? Whether it’s hypo-sensitivity or hyper-sensitivity.? Would be really interested in hearing other experiences in more detail.!! (/genuine, this is an invitation to ramble about your autistic temperature experiences!)

TLDR: we are terrible at temperature-related things (can’t feel temperatures properly and/or have a sensitivity issue with them) and have a tendency to cause ourselves accidental harm because of it. We are wondering if other autistics have the same/similar issues.? (You can ramble in replies/reblogs as much as you want to answer that question!)

Allistics (non-autistics) please do not derail. This is a post about our autism and temperature issues, addressed at other autistics. If you want to talk about a separate disability and how it affects temperature-related sensory issues, please make your own separate post.! Thank you 🫰.

[crippy-tangerine]

“It wasn’t your fault…” uh, yeah girl I know that already, can we just finish this print-out CBT worksheet so I can go home and cry…?

[crippy-tangerine]

Positive post, but mention psychiatry + vaguely talk about misdiagnosis so!

Okay but like… Shoutout to our (newer) psychiatrist who just wrote the first psychiatric report we’ve ever had as an adult that doesn’t have “EUPD”/“BPD” written as one of our diagnoses…. And for being the first psychiatrist to bother diagnosing us with C-PTSD and recurrent depressive disorder 🥹.

Also said something along lines of “I think your autism is at the centre of most of your issues” and yes, yes it is, thank you for recognising that 🗣️.

Feels real good to see a report on us that doesn’t fixate on the “borderline/emotionally unstable personality disorder” label. Some of us used to think it fits, but to be honest, the ASPD/CPTSD/autism/CDD combo covers everything that apparently make us BPD. (And what a combo…. Wow….)

A win of an appointment to be honest. Worth the money 🧎.