Compulsive Liars: A Really Bad Tutorial Okay, So I’ve Decided To Write A Little Tutorial On Compulsive

you need to get it out of your mind that psychosomatic illness is just “making up symptoms” when it’s actually much more like your body is being actively poisoned by chemicals released from your brain

a thing about being severe autistic adult on internet is people expect u know everything, every non-said/clearly stated boundarie, every slang, acronym, people mad when ask what things mean, need plain language, people rude because "how u not know this simple basic thing?" i feel so rejected and out of place.

i dont navigate things same as you, my brain works differently, i dont know lots things and often dont know how to search how to find dont know how to make sense how understand it hard makes me so frustrated and angry and sad.

people are so mean

Hi

Welcome to my blog. I'm Raven, he/him, and this blog is mostly about migraines, usually acute confusional migraines, and my experience with them. You will also find posts about migraine triggers, photosensitivity, and epilepsy. I will not most anything that flashes, strobes, uses bright colours, or anything with audio. I'm trying to make my blog as accessible as possible. If the background and text are an issue for others (they aren't for me, but I'm only one person,) I can change them.

Feel free to ask me about ACM, migraines in general, or photosensitivity for any reason, and I'll answer to the best of my ability. Remember that I am only one person, and I do not speak for everyone. I can only speak to my experiences.

What is an ACM?

An acute confusional migraine (ACM,) is basically a migraine that comes with the added bonus of rapid-onset confusion and other worrying symptoms, such as

Changes in vision and other senses

Memory loss

Anxiety

Moodiness

Agitation

Dizziness

Issues speaking in the way you normally do

Disorientation

Motor control difficulties

Comprehension issues

Many of these symptoms in a migraine are a medical emergency and require immediate emergency medical care. These types of migraines are more common in children and teens, but they can also occur in adults.

What is my experience?

For me, an ACM is triggered by a medium-to-loud high-pitched noise. I'm rarely exposed to this trigger but when I am, it almost always causes an ACM if I can't stop the migraine before it properly starts. The confusion state starts shortly after the headache, usually in under ten minutes, and progressively gets worse until I begin to lose time and can't properly remember what happens. I've got entire shifts at work I can't remember due to an ACM. What I can remember is rapidly-increasing emotional distress (anger, anxiety, irritation, etc,) difficulties with comprehension, disorientation, and my (admittedly already poor) speech skills and motor control abilities getting worse and worse.

ACM episodes usually happen at work for me, when I'm forcibly placed on one of the headsets (fast food,) which has a loud, sharp, high-pitched beep to alert me that there's a car in my lane. The constant exposure to the trigger makes the medications I take ineffective at preventing the migraine. I begin to mess up a lot, work far slower, struggle to communicate, and obviously struggle to do my job, which is handling money. Multiple managers have chosen spite and, despite my objections, put me on this lane. I've yet to find the nerve to put my foot down or ask to leave and go to the emergency room.

Don't be like me. If you have an ACM, unless instructed to do otherwise by a doctor, you should probably go to the ER or call an ambulance.

Gotta love it when our symptoms are a medical emergency, yeah?

Okay, as a mod of cripplecharacters, I'm about to go off from several different angles. And these aren't even all of my thoughts. I have more. (TW for ableism, mention of prone restraints, caricature characters, and really, really poor writing of disabled characters.)

If she didn't get her information through a collaboration with Autism Speaks then where'd she get it? She claims she did three years of research. Did none of that research include basic stuff about writing disabled characters in general? Also, it takes five seconds to find out that there's an issue with Autism Speaks. It's in the little Wikipedia blurb. She didn't even skim Wikipedia in three years?

Not even come slightly close to the topic of prone restraints (which have a death count,) and definitely not portray is as a good thing twice

Gotten rid of that detail of Music having an accident during Kazoo's relapse. Yeah, that can happen sometimes with some autistics in real life, but the fact that it was portrayed the way it was and by an actress who wasn't autistic-

Similarly, the angry "Brush you hair" scene was... where to even start? No, not by an actress who isn't, at the very least, MSN or semispeaking (or even nonspeaking)

Gotten rid of that inspiration porn Music singing scene at the end.

Significantly rewritten the guy who is... I think he's Zu's love interest?

Actually done something with the kid who seemed to care so deeply for Music.

Explained how said kid managed to acquire twenty thousand dollars to buy Music a service dog over the internet just like that???

Remove Music not doing anything about finding her grandmother dead on the floor??? Or at least acknowledge that the poor girl was probably traumatized from the experience and had no idea what to do or how to help? It's shot almost like she's being selfish and choosing not to help rather than being disabled, terrified, and unable to help.

Not forced Maddie into this movie using their massive power imbalance. Definitely should never have forced a young teenaged girl into a position so bad that she literally broke down sobbing because she didn't want to come across as a caricature, at which point Sia lied to her. Look, Maddie was what, fourteen? And Sia was basically a mother figure and the one responsible for Maddie's success.

Not called stimming tics. Tics come from a very different group of disorders, involuntary stimming behaviours are a completely different thing with different reasons and mechanisms. If she wanted to write Music having tics, she should have given her a tic disorder. Actually, wait, scratch that. She screwed up badly enough with a singularly-disabled character. I don't want to know how much lower she could go by trying to portray a multiple-disabled character.

Not lied about trying to get a nonspeaking actress (because she was quoted long before that as saying she would only make the movie if Maddie was the main role. She wasn't going to try with an autistic actress.) Not acted like firing the fictional autistic actress was a mercy rather than putting some work in and making the set accessible for her.

Like, sure, maybe a hypothetical nonspeaking actress couldn't have been able to handle the dancing. You know what the solution to that is? Either adapt the dancing or get her an autistic stunt double who can do the dancing

Not have Music be significantly less autistic in her head? The stimming and movement abnormalities fade, if not vanish entirely, during the dream sequences. As though the version of Music in her head is less autistic than Music in her body, maybe even not autistic at all. Which is an idea that has blood on its hands

Not tried to portray all of autism rather than just Music, a character who happens to be autistic. What Sia was doing was trying to portray autism as a whole, or maybe even turn the entire idea of autism into a character rather than create a person with autism. Compare this to a (slightly) better example, Wendy from Please Stand By. Dakota Fanning wasn't trying to portray all of autism and her character wasn't written to portray autism as a whole, she was playing Wendy, one particular autistic woman, rather than a caricature.

Given Music literally anything. Why doesn't she have hobbies? Where's her personality? I know nothing about Music as a person and that's because she wasn't written to be a person.

The dead disabled brother plot was unnecessary. As was the HIV plot.

"She can hear two rooms away" she's autistic, not Superman.

The grandmother left absolutely no plan to help Zu care for her H-MSN sister, not even a note in her will like "The neighbour is close with her, he can help." I know she died suddenly but c'mon, she has a grandchild who will need care for the rest of her life, she should have been more cautious as an elderly woman. Her carelessness was setting Zu up for failure and Music up for an even worse time of this massive change in her life.

So yeah, it would make sense that there's some growing pains, Zu has no idea how to interact with her sister and her sister is probably distressed, confused, grieving, and frustrated because her entire world is changing. But rather than treating this as a "Yeah, this would have gone better with a bit of planning and we're both struggling because we're going into this blind," it's portrayed as "Music is the source of all of my problems, she's the worst, she's unreasonable, she's the worst thing that's ever happened to me and I hate her." Why is Music being portrayed as a burden rather than the burden being how ill-prepared the grandmother left all involved parties for this eventuality.

Wasn't Music meant to be HSN? Like, level three autism? Spoken like someone who's never interacted with someone who's HSN before.

Zu is high-key resentful towards Music as though any of this is her fault and she seems so desperately dedicated to either ignoring or despising her sister and the way it's portrayed makes it feel like the audience is supposed to agree with Zu?

Wow, I went off. To keep this from being nine hundred miles longer, she should have just not done that. If she had submitted this plot to cripplecharacters, literally any of us, autistic or not, could have told her not to do this. Did she even talk to someone from the disabled community? You don't even need to be autistic, just disabled, to know that pretty much all of this was a horrific idea.

What SIA Should’ve Done Making Her Movie ‘Music’

Cast an autistic actor for the main character

Consulted with actual autistic people instead of f$&@ing Auti$m $peaks

Did PROPER research

Made the movie accessible to watch - got rid of the whole flashing light thing that could trigger seizures

Used an actual mixed actor instead of doing literal blackface

Started being open to criticism instead of having a flip out at people for calling her out

Not agreed with an interviewer comparing non-verbal people to an actual inanimate object wtf

Feel free to add to this

"Follow your natural circadian rhythm" my natural circadian rhythm thinks I should sleep 24/7 so I think its judgment is flawed

Most people really don't seem to know what this mysterious "residential care" means when it comes to disabilities.

"This person is severely disabled, they have to live in residential care."

Do you know what happens when a severely disabled person with high support needs who isn't aware of dangers and needs constant supervision applies for residential care?

They get turned down or kicked out a couple of days later.

This happens regularly, btw. Kids grow up and parents think "Oh, residential care sounds good", and then suddenly every institution, etc. goes "Sorry, we don't specialise in that, sorry, your child is too aggressive, sorry, your child can't stick to our sleep schedule, sorry, your child is too noise sensitive, sorry, your child HAS to participate in our weekly activities even though their disability makes it impossible for them to do so, sorry..."

People who can live in residential care aren't your "the worst of the worst" example. There is such a thing as "too disabled for residential care" and it's more common than you'd think! ☝🏼

"But what happens when someone is too disabled for residential care and their family can't take care of them? Surely everyone eventually ends up somewhere!"

They get passed around from institution to institution, but everyone eventually goes "Sorry, we can't keep them here", and it won't stop. Until, maybe, one day they're lucky and a fixed team of carers "adopts" them and tries to create some kind of assisted living from scratch.

Nobody talks about it, which is why it's always a big shock for parents who found a really good residential care place for their soon-to-be adult child and their child looks forward to moving out, and suddenly this wonderful residential care company turns their child down because it's too disabled. And then the next one. And the next.

So no, residential care isn't for "those with the most profound disabilities" - people with the most profound disabilities can't be in residential care at all.

shout out to the disabled people with emotional dysregulation particularly in regards to anger. people who get overwhelmed just by feeling things, people who don't know how to direct their strong emotion so its directed inwards or outwards indiscriminately. people who hurt themselves or break things, especially things they don't want to. people who start crying when they're angry and hate that people treat the anger less seriously as a result. anger is considered monstrous sometimes, like some sort of failing when it's just one emotion out of many. people act like if you can't control your anger you're automatically an abuser who exclusively and specifically takes their anger out on other people. there are indeed many instances where someone needs to learn to regulate their anger, but i'm talking about strong emotion in the context of disability. where just the act of feeling is too much, where people don't have the capacity to process their own emotions, and how difficult that can be

Just for once I’d like to tell the gate agents and flight attendants that my folding wheelchair is going into the onboard closet and not have them tell me there’s “no room”. Bitch that’s a wheelchair closet, not a “your bags” closet. Move your damn bags where they belong.

abled people really act like if your illness or disability isn’t terminal then you’re not allowed to complain about it or grieve the life you thought you’d have and it’s so fucked up

Is there anyone else who doesn't remember the "before my TBI" time? Like, you were super young (I was eighteen months) when the TBI happened, and there was never really a "before" for you, this has just always been your reality?