waking up to live

Liesel - 28 - problematic autist extraordinaire - main blog is riseru

[five-thousand-loaves-of-bread]

want talk about how even high support need severe level 3 nonverbal autism tumblr skew more people with more abilities

here some stuff many HSN/severe/level 3 and/or nonverbal autistic not able do

communicate with word. any word at all. or less than 50 words. need able do that to post on social media

not able type—some use symbol base AAC get around that & on tumblr, some not

understand communication. understand words. able read words, or able understand word sound (screenreader etc).

interact with people even online. aware people exist at all

understand social media, even very very simplified filtered version

etc

others may/may not have ability be on social media but not able not allow to

institutionalized

in prison

not allow have social media

not have support be on social media

live in place without tech or internet

dead bc comorbid medical conditions or hate crime

etc

it not really inherent bad thing, even us with most ability still very erase from autism community and we deserve heard we deserve talk about us we deserve own space. like we am just existing and a lot of us found eachother & finally have maybe first ever online community that see self in and that important

but same time need know, for us & people who listen to us, both need know: that us here still not represent all of HSN/severe/level 3/&nonverbal etc autism. many similar, some us here were there people am talk about. but also imagine there some different too. must not forget and must leave space even if they not able join us.

there people who, now or ever, not able come on here talk about own experience.

[lir-illir]

Looking at the past

It's so strange reading through this blog. I last posted on it when I was 23, and I'm now 28. I'm married, I've just finished a Masters to become a children's therapist. I did my dissertation on the experience of being an autistic trainee therapist, and I hope it can be published (after a lot of cleaning up haha).

I'm definitely a different person than I was when I started this blog. It's been 8 years since I was formally diagnosed with autism and started this ~journey~.

I mean there was a whole goddamn pandemic.

I don't know if I'll keep posting here, but I'm just glad I didn't delete it. I'm glad I can look back on how much I've grown.

[never-ending-fanfic]

As a neurodivergent person, sometimes I wonder about neurotypicals who do not have hyperfixations and special interests

Like... What do y'all do then?

[lir-illir]

*kicks down the door* What's up it's been 5 years since I logged into tumblr

[mothric]

executive dysfunction is telling yourself for two and a half hours that you need to shower bc you smell like your workplace and you absolutely Cannot do Anything Else until you shower, doing Any Other Thing before showering is illegal!!! but you still haven’t for some reason??? you’ve just been sitting on your bed in a towel scrolling tumblr for 2+ hours thinking “I need to shower right now immediately” and growing increasingly frustrated that you are still not clean and you haven’t eaten or done your laundry either

[mothric]

ok actually no I’m reblogging this because a) I am clean now (and I smell amazing, thank you), and b) I had a heckin Realize and I wanted to share it with y’all in the hopes it’ll help someone else with a brain like mine.

I figured something out about myself a long time ago– it’s only just now occurred to me that I was in fact solving a problem caused by executive dysfunction, and I haven’t been implementing this solution lately because my brain went “that’s a relatively new term to me and therefore a Different problem that requires a Different solution”. thanks a lot, brain.

anyway, long long ago, before I knew these fancy schmancy Official words, the problem, as I phrased it to myself, was such: 

sometimes I get Stuck. I was doing something, or on my way to doing something, and then… I just. got stuck.

“Stuck” looks like refreshing my feed or dashboard repeatedly. or it looks like staring at a spot on the wall. or chewing my fingernails. or picking at a stubborn sticker. all the while, my brain drifts through various unrelated topics I wouldn’t be able to recall if asked. sometimes I can get Stuck for hours before realizing I am Stuck. sometimes I get so Stuck that I go to bed that way (feeling especially bad for being unproductive) and I have to just reset everything by sleeping.

one day I asked myself, “why is this happening? why am I stuck, right now, at this moment in time?” the answer, as it turns out, was pretty simple: I was trying to make a decision, and I got distracted. I haven’t moved forward because I haven’t answered that one question or made up my mind.

let me rephrase this in terms of executive dysfunction: many people have expressed that it feels like knowing you need to do a thing but not feeling “ready” to do it. many with ADHD may also be familiar with the feeling of needing things to be “just so” before you embark on a task- you need your setup to look a certain way, or you need to set a timer, or have the right music playing, etc.

when I get Stuck it’s often because I got lost somewhere in that setting-up process, and my brain took the opportunity to nyoom off into Distraction Town.

getting myself Unstuck is solved, 95% of the time, by tracing my steps back to the original decision I was trying to make- often something small and inane- and then troubleshooting from there. (out loud! verbal processing is totally punk.) 

“what was I trying to do?” 

“was I trying to decide between two things?” 

(the answer’s usually yes.) 

“what were they?” 

“okay, let’s decide. 

“okay, that’s settled. let’s move on.”

and then I am free as a bird to nyoom in the direction of The Thing I Wanted To Do All Along, in the amazingly disorganized, scattered, yet rapid-fire way that I do many things.

so!!! in the case of my first post, where I hadn’t showered for 2 hours? turns out I had been trying to decide what music to listen to in the shower. (another hack: my chances of getting Stuck while showering decrease by 75% if I have music playing to help me keep track of time.) I couldn’t immediately make up my mind, got lost in thought, got distracted, and drifted. once I stopped and asked- “why am I stuck?”-  then I remembered- “oh yeah! I wanted to listen to music”-  and then decided- “I want to listen to Daft Punk’s Discovery album”- I was finally heckin able to shower. and also eat, and also throw my clothes in the dryer.

and may I add I only zoned out once, during the slow part of “One More Time.” :P

I’m not saying this is a foolproof method. sometimes I don’t have a reason for being stuck, and that’s okay! I’m also not saying this is how every adhd brain works. it’s just how my brain works, and I’m sure there’s at least a few who can relate. for those few, I hope this helps!!

[mothric]

a lot of people are reblogging the original post without the update and leaving frustrated comments and that makes me sad! if I can find ways to hack my brain than so can you! executive dysfunction is a real and frustrating challenge, but don’t buy the lie that there’s no way to work with it or around it!!!

[lir-illir]

I’ve gotten a job as a classroom special needs teacher, and I’m considering reviving this blog to talk about it.

Obviously, I won’t use any identifying information, but I think it’d be nice to talk about being a special needs teacher with special needs =P

Idk if that would interest anyone but me, but hey. 

[adhdpie]

adhd culture is doing something just slightly to the left of what you intended to do

me: i’m going to make coffee & play a cellphone game :)

adhd: 

[lir-illir]

the griffin friend: shows you weird deviantart fetish art, every female OC is a lesbian, creates expansive worlds for very simple shit for a laugh

the travis friend: will write multiple messages of well thought out and encouraging texts if you tell them youre sad, respectful memes, gives themselves spa days,

the justin friend: cries if you say something nice to them then calls you a loser, sends you cursed pictures with no context, always posing

the clint friend: dad, calls you a sellout when you say something genuine

[theperksofbeingahugefuckingcunt]

If you’re autistic, trust your gut instincts. If you don’t feel like going to a party, don’t go. If you don’t like someone but can’t figure out why, stay away from them. If you have a bad feeling about a situation, just stay away from it. There’s probably a good reason for it.

[sausaged-rat]

I know I reblogged this before, but I have to again because so, so many people will try and exploit the fact that you’re autistic; to convince you that your instincts are wrong. They’ll say “how can you know that person is bad, that party will be bad - you’re autistic and autistic people are bad at reading social situations!” 

and don’t buy that for a second. Literally every time someone has made me rethink that and I did the thing, it ended up being a very uncomfortable situation at the least. Don’t do it, fam. 

[protect-lgbtqia-kids]

I think autistic people have a very good gut-instinct. But  ordinary people use autism as  a way to doubt yourself. And later on when your instincts say ‘bad’, you are already conditioned to ignore it. Then the same people who forced you to ignore your instincts will  blame you for being taken advantage of. Or how autistic people can not be trusted, because see here, they can not spot abusers! Yeah, because we  were punished and forced to work against our instincts  until discomfort became normal and we were unable to see danger any longer. And it is a damn hard process to unlearn that. And painfull when you realise how badly you have been harmed by it, how much easier your life could have been if people hadn’t forced you to work against your instincts and comforts.

[thegooddoctorimagines]

While this is from the Autism Women’s Network, it includes other genders as well.

[pussy-likes-pussy]

why is everything so heavy?

[catmilks]

that thursday feeling.

reading depressioncomix inspired me to do a little comic about my own day-to-day experience.

[elfgrandfather]

I’ve seen some comments on this being like “Oh he’s way too active this isn’t how severe clinical depression works!” which makes me a little sad because implying everyone’s experience of depression must be just like yours is insulting. This comic is about how depression still deeply affects me despite my attempts at a normal life but that it becomes almost mundane, you take a break to cry and scream and feel sorry for yourself but then you have to go back to doing whatever. I have almost no energy but I gotta live.

Saying you need to constantly be at your lowest and most dysfunctional in order to have Real Clinical Depression isn’t realistic. Learning to cope with this illness that will likely haunt me my whole life isn’t a bad thing.

[lir-illir]

ADHD stereotype: reckless, proactive, creative, funny, charismatic, talkative, ambitious, sociable, energetic

Me, ADHD goblin: barely has enough energy to get up in the morning, speaks in garbled Satan-tongue, devoid of wit, socially anxious disaster, crashed my car into another guys car this morning because I literally forgot it was there within seconds of seeing it

[queerfemme]

autistic culture is using gifs and reaction images so you don’t have to spend any time or energy constructing a response

[againstshame]

Toward a Behavior of Reciprocity

This isn’t as directly related to the theme of shame as most things I post here, but I keep coming back to the idea that I should post something about it. Toward a Behavior of Reciprocity by autism researcher Morton Ann Gernsbacher is an academic paper, but instead of describing new research it’s mostly a critique of problems with mainstream autism research and therapy. 

Reading this paper was surprisingly emotional for me. In a thoughtful, academic way, Gernsbacher describes some of the most painful parts of autism stigma and shows why they aren’t true. I seriously recommend reading this paper to anybody who was bullied or labelled a “problem kid”.

Her main point is that people apply the ideas of “social reciprocity” and “social skills” unfairly. People blame things like the bullying of autistic children on autistic children not having social skills, as if the people bullying us have nothing to do with it. As if being a bully isn’t a violation of social rules too.

Gernsbacher says:

“Other items on the Social Reciprocity Scale [a checklist developed by researchers to measure autistic children’s social skills] illustrate the thesis of this article: Some professionals have forgotten the true meaning of reciprocity. Consider the item, “is regarded by other children as odd or weird.” This item appears to measure other children’s lack of social or emotional reciprocity. Regarding another child as odd or weird implicates the regarder—not the target child—as lacking in empathy or understanding.”

The rest of the paper goes through several other examples of researchers, teachers and parents who “lack reciprocity” toward autistic people, including some descriptions of ABA therapy. Then it explains some research that shows how much reciprocity and understanding from parents, teachers, etc. can help autistic people. That seems like an obvious thing, but it’s cool to see research that proves it.

[moncarnetdenote]

Fuck, that hurt to read. I was severely bullied in grade school, and I only remember from the adults there who were supposed to help me and protect me saying “well, maybe if you were not ”(basically, you)“ they wouldn’t do it”

It was fucking damaging. Even today I have difficulty putting the blame on the actual assholes in my life because I still think to myself “well, maybe if I wasn’t such a clueless fuckin moron”. When stuff happens, like classmates harassing me for “being a sad loser”, my first reflex is still to hate myself and mourn my lack of social skills, rather than get angry that they are disrespecting me with no valid reason to do so.

Stop. Blaming autistic kids for the bullying they’re being put through. For the love of god, stop. Please.

[13faeinapenguinsuit]

That autistic / ADHD feel when you want to do… something.

[shinybluething]

I call this “activity cravings” because it’s like when you want a certain food but you aren’t sure which food. But for activities.

Do I want to go for a walk? Play a game? If so, what kind of game? DO I want to make things? Read? Watch tv? A movie?

[catastrofries]

Hey, Thank you for the words. 

[astudyintransience]

sorry i was late i can’t conceptualize time