Latest Posts by theravenflies - Page 8

seeing supposedly 'neurodivergent friendly' creators (who are usually Autistic/ADHD) stigmatize NPD, ASPD, and any PD under the sun makes me so angry. like they think 'neurodivergent' means 'Autism and ADHD' when the creator of the term meant for it to be a term for anyone with a different neurotype INCLUDING PDs, schizophrenia, psychosis, and all the disorders people love to treat horribly. i've had people tell me that the term was originally intended for AuDHD only so people are just using that definition but... definitions change. i thought autistic people knew that. i thought we were familiar with this. but not when it comes to demonized disorders... ok.

(p.s. it's really easy to just say Autistic, ADHD instead of 'neurodivergent' when you're only catering to Autistic and ADHD individuals)

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

Every time I see another ibuprofen post on this site I'm like STOP

STOP

Stop.

Take that after a meal. Take it with a big glass of water. Don't take it on an empty stomach EVER. Don't take it with alcohol. You will destroy your stomach. You will end up with an ulcer. You will vomit blood. I'm not exaggerating.

Yes, you. Yes, it will happen to cute little you. With your cute little bottle of miracles. Ibuprofen really does that to your body.

Love, an adult person over 35 who can't take NSAIDs anymore

this is going to be a long post, it's kinda just me writing all my raw unfiltered thoughts on ABA therapy as someone who actually went through it

-> TW for ABA therapy, child abuse, suicide <-

I was functionally diagnosed with autism at the age of 3 but it wasn't until I was 13 that I was actually formally evaluated for it and given an official diagnosis. I was behind in social skills and developmental skills

[ID: "was also described as a sensory seeker. She does not currently have any friends and has struggled to make and maintain peer relationships throughout her childhood. Difficulties with social skills were initially noted when she was in preschool (years before the onset of clinically significant symptoms of anxiety and"]

[ID: "Social functions: [blank]'s mother also completed a questionnaire rating her social responsiveness. Her responses on the SRS-2 indicated that [blank] is demonstrating severe deficits in the areas of Social Communication (reciprocal social interaction and nonverbal and verbal communication), Social Motivation (motivation to engage in social-interpersonal behavior) and Social Awareness (perceiving social cues) and moderate deficits in the areas of Social Cognition (understanding social cues). Severe Repetitive and Restrictive Behaviors (stereotypical behaviors or highly restricted interests) were also reported. The total T-score on the SRS-2 indicates severe deficiencies in reciprocal behavior that are likely to result in interference in everyday social interaction"]

[ID: "%ile) are mildly impaired, while her social skills are moderately impaired (2nd %ile). By domain, demonstrates mildly to moderately impaired abilities in six adaptive skills areas, including self care (9th %ile), communication (5th %ile), home living (5th %ile), self-direction (2nd %ile), social (2nd %ile), and leisure (1st %ile)"]

and ultimately all this ended up with the number one recommendation after my autism evaluation being for ABA therapy.

[ID: "Recommendations: Based on the above results, the following recommendations are made for [blank] and her family.

1. ABA therapy: [blank] May benefit from an intensive treatment program to foster cognitive and communication skills, improve independence and adaptive functioning, and help manage interfering behaviors (i.e home-based, 1:1 instruction, task analysis, etc.) Most private and community programs are based on principals of operant conditioning and taught in home with 1:1 instruction"]

*I'm getting misgendered here. my pronouns are he/him

"operant conditioning"-- like a dog 🐕🐕. woof woof.

my mom didn't know any better so she put me in ABA therapy with the Center for Autism and Related Disorders. she regrets this. I regret this more.

my autism evaluation was cruel, it dissected all my flaws as if I was a bug under a microscope in a highschool laboratory. my evaluation was passed around to ABA therapists, a line of high schoolers peering through the microscope examining the most vulnerable parts of me.

and I choose the highschool analogy quite deliberately. most of the ABA therapists at my center were recent highschool graduates with no degree and little training. they knew nothing about autism and had no qualifications. you need more certificates to become a professional dog trainer than to become a professional human trainer.

"operant conditioning"

and I wish I could say it was just a poor choice of words but ABA therapy was dog training for children. my dad used to call me an "it" and somehow I felt less dehumanized by that than the entire experience I had in ABA therapy.

I was the oldest person at my center (I did not receive in home therapy) with the next oldest being approximately 3 years younger than me. at the time I felt babied. I was surrounded by 5 year olds and I was treated as if I was not just a 5 year old but an autistic 5 year old and anyone who has been a visibly autistic 5 year old knows what that feels like. I had escaped being an autistic child and now I was being treated like one again. The head of the program tried to console me by telling me adults received their services too.

[ID: "Following the principles of applied behavior analysis, CARD has developed a treatment approach for children and adolescents with"]

this was the first lie they told me. CARD does not work with adults.

I was not allowed the privileges of being a 13 year old. because I was an autistic 13 year old and therefore I was the equivalent of a 5 year old. I was in psychotherapy at the same time and I had grown very accustomed to some level of freedom in therapy. I was allowed to use the bathroom independently. in ABA therapy I was not allowed to use the bathroom independently. I tried once, me and my therapist were on an "outing" to the grocery store and I told my therapist I was going to the bathroom and walked off and I got a very stern talking to about how I needed to "stop eloping" and if I didn't stop it would "become a behavior"

eloping became a common theme used to control me and squeeze money out of my parents.

out of everything I hated in my life, including severe physical abuse at home (which they did not report), I hated ABA therapy the most. I would repeatedly make serious threats of suicide to try to get out of ABA. no one cared. everyone thought I was being dramatic but there were times I wrote out suicide notes and ABA was among the reasons I listed. ABA made me feel hopeless, depressed, revolting, disgusting, inferior, and less than human. between ABA, my home life, and my social life I had never felt so hated and it was boiling through my skin. I acted out, I was bullying people, I was behaving recklessly, I was starting fights, and all this only made the oppressive force of ABA crack down on me harder. I was a cat hissing in the corner begging to be left alone and ABA brought a net to try to tame me further. every time I scratched back it was listed as a reason I needed to be there.

I was "disruptive" and "rebellious" and "uncooperative" and "resistant to treatment" and no one could figure out why I was "regressing" despite me shouting the answer. I was screaming and no one was willing to hear me

I hated myself and my autism. my autism diagnosis made me want to die. I didn't feel freed by it or understood I felt ashamed and disgusted. I felt incompetent and like I had failed. I was ashamed to be at ABA, it was my biggest secret. I'd lie to my friends about why I couldn't hang out and I'd lie to people in public about who the woman I was with was and I'd lie about all of it to try to cover up my most shameful secret.

ABA therapy did nothing but foster this. In ABA therapy I was mocked for being autistic and what was happening only clicked when a young kid, maybe only 4 or 5, was flapping his hands and a therapist took out her phone and recorded him. we were circus animals. it was all an entertaining show to them while they poked and prodded at us with metaphorical hot irons to make us dance. the first time a therapist laughed at me for rocking back and forth I wanted to throw up. I almost did. it was systematic bullying of children I was forced to watch and experience.

my point is: the last place on earth I wanted to be was the ABA center.

so of course I tried to leave. my mom would bring me McDonald's and I'd beg, sobbing real tears, to leave early because only she could sign me out. every time I'd go to meet her I'd be marked as "eloping" and my hotel stay in hell would get extended.

my natural response to a stressful environment (leaving) was pathologized. I was eloping this way and that way and never once did I actually, truly elope. that word was a weapon used against me. they used my "elopement" to justify extending my stay to my parents. they ate it right up.

they argued I needed to stay there because I was making friends. this was true, I'm great at getting along with children it's part of why I want to go into pediatrics, but I had also made real friends with people my age at my highschool. ABA was getting in the way. I wanted to spend time with my friends outside of school but ABA took up all my time from the minute I left school to 6pm and all day on weekends. I was doing a full time job's worth of hours. I complained about how I was missing out on spending time with my real friends (as in, over the age of 7) and I was met with almost no wiggle room in my schedule. I was allowed to pre-plan time to spend with friends but every time my friend group wanted to do something spontaneously? I had to say no, and I had to lie about why. my friends would share stories about driving around town with 2 people in the group stuffed in the trunk, of hanging out in the woods together, of taking part in ordinary highschool activities as ordinary high schoolers and it made me cry because I was not an ordinary highschooler and I was not allowed to participate in ordinary highschool activities. I was one of those weird, unpleasant, socially awkward autistic people instead. eventually, they just stopped inviting me. I was forced into the out group by ABA.

I'll never get that back. I'll never get a chance to be a normal highschooler ever again.

when I did have time available to hang out with people I never had the energy to. at the time I was living with an undiagnosed physical disability and I was begging to see a doctor but no one would believe that it wasn't just anxiety. the people who believed me least of all were the people at the center.

I was constantly told I was trying to get out of therapy by "feigning" very real pain and fatigue. I tried to explain spoon theory, and that I had limited spoons, and in response they made a task for me to name things to "regenerate spoons" that's not how it works. I wasn't the only physically disabled person there. there was a wheelchair user who was constantly forced to stand for periods of time despite being in agony doing it. he wasn't allowed rewards until he did it.

rewards were used to train us like dog treats are used with dogs. sometimes the treats were fun! I'd get to cook, play Mario kart, and go on outings. other times the treats were "using the correct name and pronouns for me." I'd constantly be threatened with deadnaming and misgendering if I was being "noncompliant."

misgendering because of my autism was a theme in my life. my neuropsych evaluation report misgendered me. my parents misgendered me. the staff at ABA misgendered me. at one point the head of the program suggested that my "gender confusion" was because of my autism. my abusive father latched onto this and still claims that the reason I'm "confused" about my gender is because the evil transgenders tricked me into thinking I'm one of them because I'm autistic and therefore easily impressionable.

the two therapists I had were nice because I refused to work with the others. they weren't on a power trip and both eventually left because they realized the harm the organization was doing. other therapists were not so kind. other therapists were on a power trip, because in their mind lording over autistic 5 year olds (and autistic 14 year olds) makes them powerful and strong. occasionally I'd get stuck with one of the other therapists when my usual therapists were out. they would talk to me in a baby voice. they would make fun of me for rocking back and forth, for not making eye contact, for talking about Skyrim "too much" and generally just for being autistic.

I never really knew what I was supposed to be doing, just that I was doing it wrong. the therapists there rarely actually told me what my tasks were they'd just mark yes or no on them, judging me for something I wasn't aware of. I was never actually supposed to graduate, I was never supposed to get out, if they wanted me to succeed they would have taught and explained what was happening but I was intentionally left in the dark.

I continued threatening suicide to get out. no one took me seriously. I was seriously considering it. there's no happy conclusion where someone finally realized it was all wrong, or I figured out how to be allistic and graduated, or I felt more comfortable there. I only got out when covid struck and shut the center down. it's gone now, replaced by a family advice center. I hope their advice for autistic children is to never put them in ABA.

there is no grander message here just suffering. I'm sorry if you were expecting some sort of great point at the end of this. there's not one. it happened, I wish it didn't, and I hope no one else experiences what I did ever again.

okay to reblog

“Imagine having a child that refuses to hug you or even look you in the eyes”

Imagine being shamed, as a child, for not showing affection in a way that is unnatural or even painful for you. Imagine being forced, as a child, to show affection in a way that is unnatural or even painful for you. Imagine being told, as a child, that your ways of expressing affection weren’t good enough. Imagine being taught, as a child, to associate physical affection with pain and coercion.

Sorry to get preachy outta nowhere but if you are a person who's never had a phobia PLEASE don't say shit like "it's not dangerous" or whatever because phobias, especially IRRATIONAL phobias, don't fucking work like that.

I personally have a specific phobia that, when triggered, used to make me spasm and hyperventilate and cry, and it was super embarrassing because I was fully aware that there was nothing really wrong. You can experience the effects of a phobia while objectively knowing you're safe! And STILL I would get people telling me to chill out cause I was fine.

I've gotten better at managing it. I can thing straight and control my breathing and not feel *emotional* fear, but my body still locks up and my heart still goes crazy and I still have to focus on breathing.

I am aware that it doesn't make sense. I am aware that I am not in danger. I'm practiced enough that I can sit still and have a conversation through the experience now. But it's still a phobia and no amount of reminding me how irrational my body is being is going to fix that- it's just gonna piss me off on top of it.

what i need narc abuse believers to realize when we say "narc/npd abuse doesn't exist" is that we are not saying:

your abuse wasn't real or valid

pwNPD are never abusive

pwNPD are perfect angels who can do no wrong, ever

you're a liar

you're lying about your abuse

there is a 0% chance your abuser had npd

abuse isn't real

abuse doesn't happen, ever

you're an abuser

you are, without a doubt, not disabled, and also one hundred percent ableist and sanist

we are saying, though:

narc abuse itself, as a concept, does not exist

narcissists do not perpetuate any type of abuse that egotypicals can't

your abuse and trauma wasn't narcissistic abuse but rather emotional or psychological abuse

narc abuse itself, as a concept, has harmed pwNPD and their relationships

narc abuse has ruined any chance of finding actually good resources

narc abuse itself, as a concept, has been used to abuse narcissists

narc abuse itself, as a concept, is named after a mental disorder, which is inherently sanist and ableist

you have ableist and sanist biases that you do need to check, regardless of if you're intentionally or actively trying to harm people or not

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.

Using disabled people to make a point is incredibly shitty btw.

Currently watching a video in driver's ed about texting and driving where they get a bunch of people who text and drive and interview them. They then bring in a disabled woman who's family's car was hit by a texting driver. The people all start crying from guilt and promise to never text while driving again.

Understand the point they were trying to make, but is always better way than this. Disability is not fate worse than death. Disabled people are not for making points. We are people.

Not going to tag a very icky post that I found but it’s not hard to find. So, here’s your reminder that;

Self suspecting and self diagnosed autistic people are NOT taking resources from diagnosed people. You can’t get autism services without a diagnosis, you can’t go to any therapies really without a diagnosis and so on.

Autism accessories have a abundance supply. So yeah, get those ear defenders, get those sunglasses, get those stim toys.

You aren’t taking anything from diagnosed people.

Stop saying self diagnosed people are taking away from diagnosed people, because they’re not. They have their space in the community. The community is big enough for them.

I see a lot of posts about how shitty it is to film disabled people in public and to make jokes when someone is having a medical emergency, and while in general I absolutely agree, there is a degree of nuance.

I have seizures, (most likely psychogenic/nonepileptic, I'm still going to be working with a neurologist to confirm my brain is intact though) and sometimes my friend @corypaws films them so that I can show my doctor. They have expressed guilt about doing this, but here's the thing: not only did I consent to this, it was my idea.

I had a seizure yesterday, and another friend, @thosegoodbois , made a joke about Caesar salad during it. They also felt guilty about this, but it was still incredibly helpful for me. On certain rare occasions, I'm fully conscious and aware for seizures. This was one of those times, so I heard everything. The people around me staying calm helped me stay calm too.

If a disabled person outright asks you to film them, you should really consider doing it. If a disabled person asks you to stay calm during a medical situation, you should at least try. Videos can be a very helpful diagnostic tool, and help make sure we are believed by doctors*. Freaking out when we have a medical problem might cause us to freak out too.

So basically I agree that in general filming disabled people and making jokes during medical emergencies is bad, but it's fine if you have consent.

Remember: disabled people are not a hive mind. At the end of the day, it should come down to what the individual wants.

*you probably shouldn't post it online though

Aspie supremacists: autistic people are actually smarter than allistic people.

My friend: *helps me remove the handle of my cane from my mouth after it got stuck*

I don’t know if you’ve heard, but it has become a big conspiracy theory among teens in Tiktok the idea that Helen Keller was fraud that didn’t exist, and the main argument to back this is “how could someone be both blind and deaf and still be successful and write books”. That’s plain ableism. This entire thing is just deeply ableist and the fact that an ableist conspiracy theory like this can spread so easily among kids is just scary. 

Conspiracy theories, misinformation, fake news and bigotry are not a generational thing! It’s not a “boomer” thing, this is something that happens among all generations.

can we stop saying that words like dumb and stupid are ableist slurs or ableist language please I’m autistic and that’s just… not what the fuck a slur is bye

I wish there was a law against strobe bike lights. Last night i literally had a seizure because my boyfriends roommate got home when I was outside, and suddenly the yard was strobing.

Like okaay, TV rules were changed cuz of that one episode of pokemon that gave kids seizures right? So how come its chill that people can ride around through town with strobe lights attached to their bikes? What if a kid is in a car behind you and has a seizure? What if someone is walking down the street and suddenly your bile is the reason they are in the back of an ambulance?

As someone with photosensitive epilepsy, I've been taught my whole life to avoid the flashing triggers. When things are flashy online youre told to just avoid the internet, when stores have bad lights dont shop there, no clubbing or parties because there will be strobes. It feels so unfair that even when we go out of our way to avoid seizure triggers, people still will find a way to make your world smaller and smaller.

Even on a not epilepsy note, they are literally more unsafe for bikers because the strobing light makes it harder for night drivers to tell how fast and where exactly you are than a non blinking light......

i want you all to know that there is an artist (carmen papalia) who, after he started using a white cane, assembled a 12 foot long white cane and began using it in downtown vancouver. the length of the cane made it functionally useless as a device and the only purpose it served was making him an obstacle for sighted people. dare i say… 2019 goals

so here’s a quick lesson about having patience with kids.

I have a 6th grade student who isn’t really interested in doing her homework (big surprise). from my experience, kids who aren’t trying to do their homework usually fall into two general categories – “this is too easy and therefore boring” and “this is too hard and therefore i’m not even going to attempt”. it became clear by October that she fell into the latter group, but most of the staff chalked it up to “she doesn’t understand it”. I didn’t really believe it because she was a very smart, emotionally aware girl and it didn’t seem like she didn’t always want to try, just that she would rather do other things than struggle with her work. 

yesterday, she got sent to my office, just so that she would have a space away from her friends to focus on her work, and she asked me to help her with two questions. I looked at them and they were fairly straightforward, simple questions about the results of using various amounts of force on an object. I did what I always do – I read the question out loud first, and then tried to help her use recall to figure it out. she did in a snap. I did the same with the second question, and before I even finished it, she went “OH!” and started writing her answer.

that’s when it hit me – she doesn’t have trouble with the material, she just has trouble reading and processing what she’s reading at the same time. big difference! I asked her and she confirmed that it was easier to hear a question and understand it than to read it and understand it. so I got her phone out, pulled up her voice recorder, and told her to try reading the question aloud and then playing it back to herself so she could process it and she looked like i had handed her the holy grail.

the moral of the story is that sometimes you have to set aside what you think is a problem with a kid and just watch for what’s easier for them. will she be able to do that during a test? maybe not, BUT now that she knows that the issue is processing reading and that she’s an auditory learner, she’s in a better position to ask for resources to help her work better in school.

so i’m off to the school counselor to let her know so she can possible get more tools for auditory learners.  

Things they don't tell you about being a first time wheelchair user in highschool

Literally everyone will ask if you broke your leg(s). Everyone. Even people you don’t know. Theyll ask a lot and think you’re extremely fragile.

bruises show up within the first day of rolling around, and they can really suck

people will try to grab your chair if they think you’re struggling and it can be hard not to snap at them for it

static electricity is a huge issue. You will probably either continuously shock your leg when you’re rolling around or do what I did today and zap someone so hard as you pass that both of you nearly keel over

people will call you out as a faker if you do anything even remotely fun ever on your wheelchair. Wheelies? Obviously your legs are fine lol not like you have to go down fucking curbs /s

puddles are the worst and if there’s a curb with a puddle all around and you have some ability to walk its a better idea to just stand up and navigate the chair than to fall backwards into said puddle

weird looks from people are inevitable, especially from people who don’t like you

bus drivers will often push your chair and give you advise you don’t want to hear, even if you tell them nicely you can push yourself. Its really hard not to get mad at them for it

no wheelies in school. Though if you do it in the elevator when no one else is with you you can’t really get caught.

speaking of wheelies, always be ready to throw at least one arm behind you in case you fall. They say tuck your chin in but its easier and more reliable to throw your hands back and keep your neck up so you don’t hit the floor. Sore arms are way easier to put up with than head injuries

don’t even bother to try and roll back up curbs. You will either be there for an hour or fall backwards. I managed to do both.

90% of classrooms that aren’t special ed are not very wheelchair accessible.

people will automatically assume you’re faking something if you’re not considered dumb enough in their standards to fit in with disabled students (aka high class ableism at its finest)

people are going to give you weird looks if you don’t suddenly start sitting with the other disabled kids

standard backpacks usually dangle way too much to keep on you easily, so try to pack light

built in storage on wheelchairs cannot sufficiently carry books

don’t try to hold an umbrella. Period. Especially not with your teeth. It doesn’t work.

don’t try to give the bus driver your ticket while you’re stuck on the ramp. And speaking of, its easy to start falling down the bus ramp so be careful, and when in doubt throw on the breaks

and finally if you’re like me pray to god you don’t go nonverbal when someone is trying to push you and you don’t want them to because it is hard to get them to stop if you can’t speak

able-bodied people can and should 1000% reblog this, some of these things I’ve seen on tips about using a wheelchair but a lot of these weren’t things I’ve seen

why doesn’t the x-mansion have wheelchair ramps

it’s literally his house

how does he get in and out of his own house

Spoopy Season Safety

"but you already made it this far without accomodations so it can't be that bad"

I am biting you.

I hate hate hate hate hate aspie supremacy rhetoric I hate it so much. So many fucking people on here say they not aspie supremacists but the only difference is they don't say asperger they still believe that all autistic people are low support needs and only need help because society is bad and wouldn't be disabled if everyone was autistic and it's not true. Think that autistic people who can't take care of themselves aren't autistic at all and don't actually exist and I hate it.

good afternoon everyone! not so friendly reminder that correcting someone’s grammar and/or spelling as a comeback to something they said is ableist! implying someone is not worth listening to or their argument is automatically invalid because of their grammar and/or spelling is ableist!

disclaimer: i’m not saying everyone who has ever done this is a horrible person or that you consciously knew it was ableist, i’m saying that it’s a harmful way of thinking and going about things and it needs to stop now. you’ve done this and now you feel guilty? good on you for recognizing that it was bad. not many people are willing to do that. get up, keep going, don’t do it again, and point out ableism where you see it. as i always say, in an ableist society like ours, the only people free of internalized ableism are those who have already unlearned it.

He doesn't have "the brain of a two-year-old," he has the brain of a forty-year-old man with IDD

disabled adults don’t have “the brains of children” they have the brains of adults with disabilities. just because you can’t understand the difference doesn’t mean it doesn’t exist

I would probably have way less diagnoses if the doctors had explained to my parents and properly documented things when I was a baby.

Like, I have some unspecified hip condition, I was born with it. That's all my mom knows. I figure it's bilateral, and that might be why my gait is weird and gods know how many of the other problems I have with my legs, like how one's longer than the other. The TBI I got as a baby was, according to my mom, complicated. All the doctor really bothered with was saying I'd be fine, he didn't tell her a lot of details. Again, gods know how many of my things that could have caused. There was whatever happened when I was five, when a severe allergic reaction (to something I had only been slightly allergic to before and have only been slightly allergic to after) and asthma we hadn't known I had put me in the PICU for days and the hospital for two weeks, then a nebulizer for months and an inhaler for year but never an Epi Pen, which I have questions about now. Apparently I also have something up with my heart.

And we don't have any of this information because the doctors weren't explaining it.

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?