yet-another-autistic-blog

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Help Me Train Nurses About Psych Stuff

I do a presentation at our hospital aimed demystifying mental illness and the people who live with it. The talk is for medical-surgical nurses, so specifically staff that does NOT work psych who feel ignorant about treating that population. A lot of the people I'm talking to are also young and still developing the foundation of their nursing practice.

If you've ever been in the hospital as a psych patient (or a psych patient navigating the medical system in general), what would you want the hospital staff to know based on your experiences? What advice or insight would you give?

I'd especially love anything about positive experiences, things that helped you, what someone did that improved the situation, stuff like that. In addition to saying what not to do, I'd love to give staff actionable things they CAN do instead.

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for the love of god, do not use chores to punish your kids!!!! it's just going to make them struggle deeply to keep their houses tidy as adults since you made them associate necessary chores with punishment and suffering, and it's going to take years of therapy to undo. don't use chores as punishments!!!

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autistic people dominate AAC conversation on tumblr so for this AAC awareness month (October), let us also remember all non-autistic AAC users & autistic AAC users who not use AAC because or solely because autism.

people use AAC for from intellectual & developmental disorders to neurocognitive disorders to neurological to physical disorders. people use AAC for disorders from birth & acquired disorders. progressive & non progressive disorders.

some AAC users have mouth speech, motor, and/or sound clarity related difficulties, others use for language and/or cogntive difficulties, some for combo of reasons.

those with…

intellectual disability

genetic & chromosomal disorders like down syndrome, rett syndrome, angelman syndrome, williams syndrome, etc.

cerebral palsy

speech language disorders like aphasia & dysarthria

schizophrenia & schizoaffective & schizo-spec

brain injury

dementia

amyotrophic lateral sclerosis (ALS), multiple sclerosis (MS), huntington’s, frederick’s ataxia, etc.

tracheotomy

locked in syndrome

n so much more not listed here

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Does anybody else track their life though a series of obsessions? Like “ah yes, i remember that happening, i was obsessing over Star Gate Atlantis at the time,” or, “this was during my Supernatural era.” I can map out my whole life in this way.

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Pros of having a brain that makes very fast associations: Good comebacks and jokes.

Cons of having a brain that makes very fast associations: that story about how you broke your foot reminded me of a fun fact about lizards.

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this felt so targeted

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There's that poll going around about what you pretended to do as a kid, like, if you were a witch or a bride or a wizard or a wolf or something, but MY favorite preschool game was called GREEN, which was where I went around the classroom and gathered up as many green objects as I could and then went over to the windowsill and lined them up in different orders. Biggest to smallest. Lightest green to darkest green. Favorite to least favorite. And then I'd stare at them and think about how happy it made me that so many things could be green. Loved to play GREEN.

Also, yeah, don't worry, I know. I'm diagnosed.

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Worst Case vs. Best Case Scenarios by Karina Farek.

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There's a difference between "disabled" and "legally recognized as disabled," and I just want to give a shout-out to all the other disabled people who don't have formal diagnoses, who don't have access to benefits of any kind, who don't have the ability to use even the shittiest and least-helpful resources, because the process of getting legal recognition for disability sucks ass.

And another shout-out to all the disabled people who purposely avoid getting diagnosed, because official diagnoses can be used against you, and you're unable or unwilling to risk it.

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I need people to understand that sometimes autism is just this

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We’re all important! Never forget that.

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I always disliked when people said things like “be yourself!” or “you just have to put yourself out there!” as advice for making friends, so it’s been pretty irritating to learn over the past few years that it’s basically correct. At least, it’s an attempt to express something true. I do still think the usual phrasing is overly broad and binary, to the point that it’s nearly non-actionable—I very much doubt that there’s a “true self” hiding inside all of us that’s separable from all our socialization and inhibitions, but if there is you definitely shouldn’t let it out all of the time. Social norms exist for a reason, ignoring them completely won’t do you any favors.

So, here’s my attempt to express what I think is one of the kernels of truth hiding in those aphorisms more clearly: if you happen to be someone who, like me, is able to accomplish ~80-90% of the standard social graces—like, you’re not hopeless at it, but it just doesn’t quite come naturally to you—then desperately clawing for those last few percent that will finally make you Normal is extremely counterproductive. In fact, you probably have more to gain by relaxing and going a little bit in the other direction. While social norms obviously matter, people can be quite tolerant of mild deviations, more so than I think is commonly realized. (Certainly more than I used to realize.) And being able to read the script and dance the dance is only one part of successfully socializing—the other is, yknow, actually connecting with people, which always requires a certain degree of spontenaeity. Past a certain point (which admittedly can be hard to find), neutering your ability to hold interesting conversations by running everything you say through a filter just isn’t worth the marginal gains to Correctness. An awkward interaction is frequently better than no interaction at all, and a little bit of weirdness can make for a good icebreaker. Surprisingly often, people will just roll with it!

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Something that helps

If you blurt out something that you thought would be funny but it comes across as insensitive, just quickly say, “I’m sorry, that was rude, what I meant was…”

If you say something in anger or frustration, take a breath and say, “I’m sorry, that was hurtful, let me rephrase…”

If you say something heartfelt, but it comes across as insincere or ironic, say “That sounds like I’m just saying it, but I’m being truly honest…”

If you accidentally tell the waiter “enjoy your meal” just laugh and say a quick “so sorry, my brain isn’t working today!” and you will most likely get a commiserating chuckle in return.

Most of the time, the other person will accept your apology with no harm done. Sometimes they even insist they understood what you meant the first time and clarification was not needed. At times, maybe they have a right to be upset, but it never hurts to apologize again so they know that you’re taking their feelings into account.

Repeat after me. It’s okay to be bad at conversation. Knowing how to apologize makes it easier.

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i made this instagram post !!! there isn't as big of a community of AAC users on instagram so I thought I would share this on my instagram (@cytochromesea).

EDIT: i got an ask that states that not everyone knows what AAC is which is an oversight on my part, it stands for alternative and augmentative communication!

Image ID:

A light blue background with a rainbow and a cloud and some stars. There is a blue border collie with wings holding an aac tablet that says I love you! Text reads: AAC etiquette. Do’s, Don’ts, and other stuff. By cytochrome sea.

The same background appears in every following slide. Text reads:

AAC is my voice! It is not a toy or accessory

Don’t touch my AAC without my permission

Don’t take my AAC away from me, for any reason (joke, punishment, etc)

Don’t press buttons randomly or flip through my communication cards without permission

How would you like it if I randomly poked you on the mouth and throat (or on your hands if you sign)? It would be unpleasant, so don’t do that to me

Some AAC users can speak sometimes. It is not your business why someone can or cannot talk

Don’t ask questions about why an AAC user cannot speak. 

Do let us communicate however is best for us in that moment

Don’t ask us if or when we will be able to speak verbally. It’s not your business 

Do not value verbal speech more highly than AAC. Any communication is good communication

Some of us never talk, either, and that’s ok! Those of us who can talk sometimes are not better than those of us who can’t. None of us owe you an explanation for our use of AAC.

Don’t look at my screen until I show you. It feels really invasive!

It feels like when someone is looking at your phone screen over your shoulder, so please don’t do this

This applies to low tech AAC as well, don’t look at someone’s cards or letter board until they show you

You have the dignity of forming your thoughts in your head before you say them, whereas my thoughts are all on display. Please afford me the same dignity that you get automatically.

Don’t shame someone for not being able to speak verbally. It makes us feel horrible

We are real people with thoughts and feelings. Please treat us with kindness. 

We are trying our best

Don’t shame someone if their device mispronounces a word. It’s quite literally out of our control.

Other Don’ts. Don’t

Don't Treat an AAC user as childish or stupid for not being able to speak. Our ability to speak does not define our worth

Don't Show frustration at the way someone communicates

Don't Make comments about how fast or slow we communicate

Also don’t…

don't Act surprised when we swear or talk about adult topics like sex, drugs, or violence. We are not pure uwu precious smol beans, we are normal fucking people

don't Assume what is “wrong” with us. There are about a hundred reasons for someone to use AAC and you probably aren’t the expert in any of them.

“OK, so what CAN i do?” im glad you asked! When interacting with an AAC user, DO…

Ask us how we prefer to communicate and support us as you are able

Assume that we are competent

Talk to us with the same respect, tone and vocabulary that you would for any one else

Give us money (this one is a joke)

Understand that AAC grammar isn’t perfect and we are doing our best

Is it rude if…

I can’t understand your device? Not rude! Misunderstandings happen all the time in any conversation, just be patient as you would normally. 

I want to complement your AAC? Not rude!

I ask to see your AAC and understand how it works? This isn’t rude if you are already talking about AAC, but don’t ask random strangers this. They don’t owe you an AAC tour. 

Thank you for listening! This post is for the community! If you are an AAC user, let me know if I missed something in the comments and I will pin it! I hope you are filled with peace and love and I hope something good happens to you today! End ID. 

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