Yay, I'm glad you were finally able to come around to making this video. I don't know if you remember but I requested this topic from you last year, and it was during the time when my catatonia was very severe. It started slow onset with little 'freezes' throughout the day - pausing for a few seconds while brushing my teeth, washing the dishes, etc. The pauses got longer and more frequent, and eventually it got to the point where I was spending several hours a day completely motionless. I would be sitting in a chair, and my head would slowly droop to the side as I lost control of my body and went limp. I sustained this posture for hours and it always hurt my neck really bad, but I couldn't do anything about it. I couldn't activate my muscles at all, so gravity would slowly drag my head down further and further, until I finally fell and collapsed onto the floor. Sometimes I would come out of a stupor episode but the mutism would remain for days afterward. It felt like the muscles around my vocal cords were paralyzed or like my brain forgot how to move them. The movement initiation was extremely difficult. It would take me several hours to write a 1-sentence text on my phone. There were times where I would become extremely thirsty, but couldn't reach my hand out to grab the cup of water that was right in front of me. It felt like I was trapped in my own body; I always had preserved complete awareness of everything happening around me, but I could not move or respond. Similar to watching a car crash from the passenger's seat, I watched myself disintegrate in slow motion and could do nothing to stop it. I ended up hospitalized because I became severely dehydrated and malnourished due to not being able to feed myself. My organs were shutting down. I now have osteoporosis and many other health complications from being weight-suppressed for so long, but I'm overall doing better than I was last year. Just trying to take it one day at a time. Catatonia is no joke. I am sorry to those who suffer from it. A tip for you if you do: eliminate or reduce as much stress as you can from your life. Stress exacerbates catatonic symptoms. Also test for and treat any underlying medical conditions. If you are in the US, your doctors will have likely never heard of autistic catatonia, so be prepared to educate them and face resistance. Look into the work of Dr. Amanita Shaw in the UK. There's also a facebook group called Catatonia in Autism which is comprised of autistics with catatonia, caregivers, and some medical professionals. It's mostly parents right now so it would be great to get some AA's in there. Thanks for the video Stephanie.

@StephanieBethany

2 жыл бұрын

Thank you so much for the suggestion and also for sharing your experience 💛

@Ahvrym

Жыл бұрын

Hi Avery - fantastic comment and I very much appreciate that you pointed me towards Dr Amitta Shah in the UK. From an initial glance, her work seems really important so I wanted to make sure I made note of the spelling mistake. Please know I have no intent to throw shade at all, just want to make sure the resource is available to others

@user-vw6sv3md2w

6 ай бұрын

Mi hijo tiene catatonia. Me siento culpable siempre me decían que tiene mutismo selectivo.

I'm a level 2 autistic. I've been describing my shutdowns as catatonic for a while now, and my therapists and family haven't said anything to correct me or anything, which they usually do if I use a word wrong or something (in fact, they've agreed with me). When I shut down, I can't move or speak for hours on end and I just stare blankly into space the whole time. After one of these "episodes" is over, it takes a long time for me to be able to fully recover. While recovering, I'm only able to move slowly, speak slower and in less words, and my brain-body disconnect is worse than usual (and it's pretty bad normally). It can take DAYS to "go back to normal" as I call it. On top of autism, I'm also diagnosed with GAD, PTSD, and depression, which makes life very stressful, and stress is a big thing that causes shutdowns, so unfortunately this happens to me a lot. It's scary...I don't like it at all...

I have "mild asd". I had "psychogenic non epileptic seizures" through my teenage hood and early 20s, which was all of the symptoms of Catatonia along with muscle stiffness and jerking, more like a seizure. I found that autistic catatonia with seizure like movements is called catalepsy. These days I have catatonia and meltdowns, and it has always felt extremely similar to the feeling I would have before and after seizures. There isn't a lot of research on this sort of thing, especially for high function autism(which is ironic because it most definitely made me low functioning in a way and played into my socal difficulties during school). If I feel catatonic symptoms now I have a few movements I do to combat it, I straighten my neck and move my head back and forth(side to side), I then consciously jerk my muscles, and if that is not enough I stand and spin in a circle. If I am feeling very drained in that state the spinning in a circle does NOT make me dizzy as it normally would. This is clearly a stimulation and sensory issue, and at the age of 26 I am only starting to realize how to work with this now. I have not worked since I was 19, I am starting school for computer science in the fall and just got my license. These difficulties have set me back considerably in life, while still having the appearance of being "normal" to most people.

I had a period of time where I would go into stupor states on the regular, unresponsive, unable to move or speak, I would feel trapped. It was to the point where people could pick me up or drag me around and I still was unresponsive. It was really scary, and people, doctors included, didn't know what was going on. I still experience shutdowns that can be quite bad, but I had never considered looking into catatonia. This video has been very informative.

@camilaleon810

2 жыл бұрын

Me too!!!! I thought it was an autoinmune thing but I understand now that they are shutdowns, usually because of stress or sensory issue (for me noises, sunlight, too much heat) I usually have these instead of meltdowns, to scream or cry is usually hard although I’m feeling so much inside, like a volcano💕

When I was attacked as a victim of violent crime, I could not speak or move for 2 months and lost all sense of myself. PSTD as a result has removed my sense of myself in the world.

@chicane7752

2 жыл бұрын

I pray you find healing and yourself again, stronger than before.

@PutinsMommyNeverHuggedHim

9 ай бұрын

i’m so sorry. sending you good thoughts

I only really had selective mutism as a kid. In school I was terrified of talking, kids would talk to me and I wouldn't talk back to them except for a few of the kids and the teacher. As I got older I got better with social situations.

@keynolivia

2 жыл бұрын

The same with my daughter. She is now 14 and the doctor’s have diagnosed her with Catonia. I’m almost certain that autism was overlooked and was erroneously called selective mutism.

@RioRav

Жыл бұрын

I was very talkative younger but got bullied a lot it got harder and as an adult assaulted and got many meltdowns and then burnout and now I have had more severe mutism for a long time, harder to process language in general.

That was a very interesting episode. I feel that catatonia might be an extreme stress response in general, but since autistic people are more prone to high levels of stress in modern environments, it stands to reason that it would be more prevalent with autism. I also suffer from chronic depression (am on SSRIs currently) and when it was at its worst I felt similar to how catatonia is described, but back then I didn't know anything about autism and that shutdowns are a common occurrence in stressed autistics.

@rachiedoubt

Жыл бұрын

I was thinking the same thing. The more I learn the more Catatonia sounds extremely similar to a severe freeze/flag/faint response.

More proof that I was catatonic when I was in my worst identity crisis and depression episode. Where I was ready to go to school but I couldn't open the door, even if I just the day before had not problem to leave to go food shopping. How I couldn't speak or move without my parents directly asking a question or telling me what to do next for months, after they rescue me from my apartment and brought me home with them. Also how I lost a lot of functionality when I finally accepted my autism and depression and it toke a year of therapy work to get me back to standard function.

Fascinating… the selective mutism description didn’t ring true for me but this does. I thought I had a dissociative disorder… but it really sounds like catatonia!

@YaGotdamBoi

2 жыл бұрын

Same though!!

@sofiazabala8473

2 жыл бұрын

this is not fascinating we suffer a lot.

@TheGenderlessAutistic

Жыл бұрын

​​@@sofiazabala8473 grim stuff can be fascinating, I feel grim topics can be the most fascinatin. I find topics like eating disorders fascinating not because their positive but because I want to know more about their grim nature.

@PutinsMommyNeverHuggedHim

9 ай бұрын

@@sofiazabala8473 fascination and suffering are not mutually exclusive.

Oh, I mistook the title as "Autism and Catalonia"... 😂 I did think it was strange That a specific autonomous region in Spain would be important to cover in a presentation, But since I like geography, I was so down to watch it! 😃 Alas, it seems my brain Misread "Catatonia", so now I'm sitting here learning about another medical condition. 😂 (I did check on the etymology of the two terms, but they appear to derive from Two complete different languages, so the fact they're so similar is actually quite random.)

@StephanieBethany

2 жыл бұрын

😂 aw sorry to disappoint

@nathanmiller7324

2 жыл бұрын

T-Shirt: "I'd Rather Visit Autonomous Catalonia Than Have Autistic Catatonia."

@kerycktotebag8164

2 жыл бұрын

Same!

I'm level 2 support needs. When i go into shutdowns or overload, i exhibit more akinetic (shutting down) and hyperkinetic (during overload) behaviors. But it's never been malignant. When I'm on complete overload, I don't even have to focus on directing my movements at all like i normally do, I just have to stop resisting my restlessness in order for me to move VERY automatically (and I'm prone to suggestion, let other ppl direct me around, etc) & i start saying "Mmm..?yeah. Mm? Yea." a lot. It also makes me very forgetful. But when i shut down completely, i don't speak much at all & my movements AND my thoughts slow down. I also don't feel or express much. And ironically, my memory is a little better during these times. I tend to do more Ritualistic (routines, long) rather than Repetitive (jerky, short) behaviors when shutting down OR just understimulated. I actually have what an ABA person notated as "a car ritual" when I'm like that. If i don't focus, i also swing into elopement. This has been diagnosed in the past as "psychotic features", but anti‐psychotics didn't help me at all. Since receiving my autism spectrum diagnosis, the "psychotic features" was reassessed and they "Ruled Out" (R/o) psychosis. But my neuropsych seemed very interested when i used the word "catatonia" to describe my bad shutdowns. She didn't argue it, and she normally corrects me if I use neuropsych terms incorrectly. I actually didn't know that hyperkinesia was a part of catatonia, so now i know it can describe my bad OVERLOADs, too! I always thought of catatonia as like the "can't move" bad type of depression, which i don't have. I have akinesia when I'm out of spoons, but I'm not depressed. Very cool to know. I get hyperkinetic when I'm not completely out of spoons but am encountering something stressful (good, exciting OR bad, distressing). Thank you so much, again!

@ArchangelsBookClub

2 жыл бұрын

Hey Kery, my daughter sort of engages in things like this type of behavior, and she is seven. She spent four months out of the last year in the psych hospital. She is 7 years old, and I am wondering if you take Methylphenidate, or if that has been an effective treatment for you in the past? I am thinking that if the mind has slowed down, to the point of Catatonia or just in difficulty speaking or thinking, that Methylphenidate might be helpful.

@herewegokids7

7 ай бұрын

For me hyperkinetic looks like a lot like a seizure however I'm totally conscious and aware. One level down from that is like....I just spazz out. It hurts to sit still.

Having an akinetic catatonic episode (I had three meltdowns in one day during a stressful time and this seemed to have led to the episode of catatonia, which was basically the more dramatic/stereotypical stupor state you mention in the video) became the catalyst for me finally getting assessed and formally diagnosed with autism. Thank you so much for talking about this subject. My personal research about this and my diagnosis process led me to very similar insights and thoughts to the ones you have expressed. This video has me feeling so optimistic about the future for understanding and managing the autism / catatonia overlap.

I just want to say thank you so much for this video. I have a son who is 17 years old and is on the autism spectrum. He was diagnosed with autistic catatonia about two years ago and this video was very helpful. And it’s good to know that there are other people out there and we truly do have a community that understands what we go through. You’re very well spoken young lady.

I went through a period of time when I was getting stuck in my car, for a good couple of hours or so every single day, no matter what I tried. I can totally relate to what you describe you were going through - tough, and glad you are better now (I am too) :) This is a fascinating topic with intriguing ideas

About the article, i just found out within the past several months that i have to have audio playing on my phone to get myself to do certain steps of getting ready (at the sink, like toothbrushing) before i leave for the day

after this video i think my worst shutdown episodes could actually be considered catatonia. i experience a wide range of those symptoms from akinesia (10+ hours) to lack of speech to stereotypy, grimacing, gazing... wow

i've already tried to learn as much as i could about autistic catatonia and this video was such a help to further my knowledge

Might have to look into this more. Still pretty sure it's executive dysfunction and depression, but it could be worth looking into.

This sounds like a secondary diagnosis

Interesting. I've had moments when I would cry when having to stand up, cry staring at the washing up I had to do, not be able to go into the shower, struggle to physically eat etc. I also frequently (more frequently than what I've just described) have thought that I had selective mutism yet it would come with inability to move, to look at someone, letting people manipulate my body into a different position, not wanting the sensory stimuli to change. So I always thought selective mutism was not an entirely correct description of what I was feeling but catatonia sounds more likely.. And yes it is scary and concerning. It is also often in these contexts that I would turn to self injurious behaviours .. Very insightful thank you

I've suffered from this since I was little (That's not just a statement, it's me realizing it). I knew certain aspects were catatonia already like the constant muscle stiffness that left me stuck in a weird posture, but not how much. I have it worse than I thought, a lot of other issues I have that I thought were separate seem not to be now. It seems catatonia is the main thing that leaves me struggling. I can't thank you enough for making this video Stephanie. It's going to be a massive springboard in me overcoming struggles. Understanding is the first step after all.

This information is very helpful. I do have selective mutism but also I shutdown into a painless state, and separately sometimes my thinking slows, I become confused and frustrated, angry when I try to force myself to do things I need to do like take the bus to go to an appointment. So I have different kinds of shutdowns. Naturally I can't talk to most people. But if I'm put on the spot I may shutdown to a painless state. Or if I try to push myself i become slow thinking, confused, hesitant and ultimately want to withdraw into my home. It can happen also when I'm at home and trying to do something difficult like make a phonecall.

@user-vw6sv3md2w

6 ай бұрын

Estoy confundida mi hijo habla perfectamente conmigo. Pero con gente extraña no.

@loverainthunder

6 ай бұрын

@@user-vw6sv3md2w He might just be shy. Or he could have selective mutism. I could not speak to most people. Now I'm taking medication to relax me.

Thank you for doing this video. This was the first time I had ever heard of this. I have had some sort of scary episodes in the past and I have even used the word catatonic but never knew it could be linked to autism. The best way to describe it is feeling like you're stuck, your body. Your brain. Your vocal cords...just stuck. This video meant a lot to me. Keep up the good work in bringing awareness to these issues 👏

I so appreciate your new set up-lovely and easier to focus on the content 💜

Oh geez... This just hits home and it explains a lot. I'm very,very likely to be autistic, I also have C-PTSD and a complex dissociative disorder, and I have no idea why, but lately I've been experiencing dissociative episodes with catatonia (or maybe just catatonia episodes, they kind of blend and lead to one another). It's so scary. This is something that has happened to me since I can remember, but I've been more aware of it in the last few years when my mental health went on s downhill. Thank you so much for this video, I'm so mind-blown and also very scared right now, but it's also relieving to know that I'm not crazy and that this actually happens to other people. I cannot thank you enough. Now I need to learn more and get to now my symptoms again. I'm so glad I'm not alone in this

Love hearing what you have to say on topics like this as always, but also AHHH your entire look in this video is so cute!!

@StephanieBethany

2 жыл бұрын

Aw thank you so much!!

Another KZread rec that describes me completely. I also have complex migraines as well so my doctor told me most of the symptoms I have fall under those. But I think it is something to bring up in the future!

Thank you so much for this video! I have been struggeling a lot with catatonia the last couple of years and there are really not a lot of informative videoes out there, and especially not with a subjective point of view, so thank you!

Thank you for puting these explanations together.

I love this natural setup better than the regular one. Looks very professional

Thank you for the work you put into researching this. I am still at the beginning of dealing with my childhood trauma. And remember at least two instances that fall into the description of autistic catatonia. I remember more that are simply feelings without real visuals but they aren't easy to understand. I ha e also experienced this recently. ASD, no matter how independent one is, is truly not a joke. There is just so much sensory stuff it's hard to describe it all without it taking 6 hours. I wonder if ppl who are generally sensory adverse tend toward the more "stoic" symptoms and ppl who are generally sensory seekers tend toward the restlessness and simple to "guide or manipulate" who are already in motion. Just a thought. Thank you again

I realized yesterday that my “paralysis tics” (I have Tourette syndrome and autism) aren’t actually tics at all. I suddenly realized it might be a form of Catatonia, but had no idea it might be related to autism. Your video was the first one that popped up when I typed in “mild Catatonia”!

Very well researched. Thank you!

That is really interesting that ECT can help. Previously I had only heard about it being used in treatment resistant depression. It is more effective in some people than others and a really common side effect is that it can mess with short term memory. Again depending on the person depends on how it effects them, some just a temporary blip others it becomes a long term issue. It is one of those things that you weigh up and if you are having that many SIBs in a day it is probably worth the potential side effects.

@kathyadair8552

2 жыл бұрын

Ive seen that done. And the female, DEP. Pt's., memory, afterward. -> No thanks! The newer, Magnetic ???? Brain Stim?? would be much better to try, First! ALWAYS!

Love the set up! Sounds good! Love the mic! Has the public accsess tv vibe! The old set felt like you wear brodcasting from behind the iorn curtin to the resistance in a fall out shelter!

Another excellent video !

Watched this video because I thought I might be experiencing this from time to time, but it seems I just tend to go mute (or speak less) as an individual symptom of my meltdowns/shutdowns. Thank you for making this video, it did clarify quite a bit for me

I can't say I've turned into a statue for hours. It usually happens mid-step and my poor balance doesn't let me hold it for more than a couple minutes without falling over. I also noticed that heightened hearing was only reported once, but I find I tend to (at least internally) freak out over the slightest new sound when I'm like this.

Thank you for this video

Thank you. So much makes more sense now

What you described is exactly what the internal experience of autistic catatonia is (as someone who has experience autistic catatonia many years ago).

Well, this has certainly shed some light on these brief episodes I go through. If that’s the case, then it’s definitely underreported among autistics cuz we just don’t think of it like that I think. I have moments where I freeze and not sure what I’m supposed to do next even in the simplest tasks. I could stand there at least a good minute in blank. Usually happens when tired, depressed, or overwhelmed. Or I suddenly realize I’ve zoned out and tell myself I gotta get moving and it’s like I have to force myself to move.

OMG. The only frame of reference I had was "seizures, maybe?" But clearly it wasn't seizures so I mostly got treated like a malingerer or hypochondriac. I still received (inappropriate) treatment for seizures which in retrospect made some other undiagnosed problems worse. Hasn't happened in many years because as an adult I have more control over my environment and stress levels and an amazing supportive husband.

Thank you so much

Interesting video.

Wow. I think you may have helped me figure out what I have. Thank you!!!

Never thought it was possible you completely overloaded my brain on this one it’s saying what the hell is going on here and I already had a major migraine cluster headaches going on for the last few days this just added more to it and I hate having cluster migraines

I'm interested to know what others actually experience. Below is a general description of what happens to me. TW: catatonia experience I feel physically slow to begin with and then, quite quickly, can lose coordination and cohesive speech. If I do not get laying down, with legs up and neck extended as though I'm looking up quickly, I can faint, lose bladder control, vomit, tremor violently. Being grabbed at the nape of the neck (cat carrying kitten) can buy me extra time. Most muscles get rigid and my legs and arms flail (usually right leg left arm) or freeze in a clamped position (left leg/right arm). Sometimes I can bark out orders, sometimes I can still write, sometimes hooting. It often feels like I forget to breathe or swallow. It is horrendous; like I am completely trapped in a body that is shutting down. Firm, organised, stroking/excessive tucked in blankets/sugary drinks/kind reassurance and having my head lower than my heart and tipped back HELP bring me back. Each session can last minutes or hours and may be one-offs or happen cyclically every 2-3 hours for up to 5 days and nights. It seems to be triggered by new stress OR significant REDUCTIONS in stress.

Wow yes im just figuring this out. Yes very very helpful. Blown mind answer to so many questions thank you

this sounds like information that could be incredibly helpful for those who have serious and chronic self injurious behaviour and i really hope these discoveries/connections we're making as humans can help a lot of people. it's also got me re-re-evaluating my own behaviours. Truly i doubt i would qualify for a secondary diagnosis of catatonia, autistic or otherwise, but also i'm thinking i'll do some more research of my own on this topic before i conclude anything about myself haha. it's really interesting. the main reason i'm curious is bc of certain aspects of my shutdowns and how i have different types of shutdowns (the part that really resonated with me is the part about not being able to stop when i'm already in movement, idk if what im thinking of is what this is supposed to be describing so im cautious of identifying with it but i have things i have been internally calling a type of shutdown where i physically have a difficult time stopping a task even when im told to, and it includes not being able to change my way of thinking when i receive information that is contradictory to what i have in my head. its 100% stress related and i will go and go until i literally collapse from exhaustion) i also hit my head (never to extremes and in fact my family probably never knew this about me but it's been a stress response for many years) i also have motionless shutdowns (wait ... meltdowns?? i forget what the difference is rn oops) but i kind of thought thats just how they were so idk anyway either way this was super informative and rlly interesting, just another reason how i can see why autism itself becomes a special interest of autistics bc like its literally just so fascinating and rewarding to learn about ourselves and why we are the way we are.

I preferred it when you pronounced it “stereo-tippy” in fact i believe that is a better way to say it. Stereo-type-ee just sounds difficult

Thanks for sharing your experience's . What you went through may be recognizable by one who can at least point one in some safe directions for the next step-in follow up. Hopefully the clinical side is becoming comfortable and competent in taking these descriptions with due concern.

I just found out that i am experiencing catatonia when i have shut downs. I never identified with selective mutism, and didn't know what catatonia was but that's exactly what happens to me. I have never heard this talked about before, and i am someone who reads about autism a lot. Thank you for this video ❤

@jessl1934

9 ай бұрын

There's moves within the psychiatric discipline to conceptualize shutdowns as brief episodes of catatonia which abate when the external stimuli which are causing the shutdown are removed.

Hi Stephanie, I really love the content you are uploading!!! Sending you light from Chile🌸 As an autistic woman I’ve been experiencing a lot of these catatonic episodes during the pandemic. Lockdowns made me really stressed, anxious and sensory sensitive. Do you think anxiety could be a trigger for entering these states ? I’ve now tried to manage them and also learnt to rest more, it’s also hard to difference this to a burnout. But the first time I’ve experienced catatonia describes exactly what you said, loss of speech, lots of stimming, couldn’t move at all. It was really scary. Thank you for reading my post.

theres also a lot of overlaps between autism and borderline personality disorder , i thought i had bpd still do a little bit but im realizing now that its probably mainly autism

Thank you for this video and your perspective! This I feel has helped to reveal a lot of understanding and is triggering a lot of overwhelming joy emotions. The typing of this is surprising as I feel I am in such a state and if pressing the like button multiple times was an option that showed up as an extreme like this message I feel would have shown up as such. Thank you again for your video, research, and first hand experience 😁🌈🛣️💂🤙🕊️🌍💙🌏🕉️🌎

This is very interesting

I’ve heard some interesting things about ECT, I didn’t know it could help autistic people this is amazing!!

@kathyadair8552

2 жыл бұрын

Learn about the newer, Magnetic* Brain? Stim??, FIRST*!! And, maybe, it's complex*/ "c-PTSD" that put you in such a severe State of "overload"/ & SHUTDOWN! Or, a combo of the 2!

@Al_ate_my_soup

2 жыл бұрын

@@kathyadair8552 what?

I think I've had mild catatonic symptoms before. But I didn't know it was a thing.

I like the background. I think this works well for now. This is a very interesting topic. Could irritation be a part of that list too?

@StephanieBethany

2 жыл бұрын

I believe agitation was on the list

If you could change the video to not have the flashing, I would be very grateful. It is really impacting my Autism. Thank you

I like your fact based videos.

I did ECT at one point to try help treatment resistant chronic depression. It was awful. It didn’t help and I still have chunks of lost memories from that time. Not saying it wouldn’t help some, maybe it would and does. But I would never do it again or be able to recommend it. My only advice is, research it thoroughly before doing it. I’m thinking this catatonia might be more what’s happening with me. I definitely forget to breathe, a lot. It’s worse lately, as I’m needing way more energy to deal right now, and it’s like rerouting power from life-support to focus on dealing with the moment and suddenly remembering that I also need to breathe. But ability to word goes first.

First! (Never understood this wording!). Also enjoyed you at my live! ☺️

@StephanieBethany

2 жыл бұрын

Woo!! And I enjoyed being there!

@resourceress7

2 жыл бұрын

I thought "first!" meant someone is the first person to post a comment?

The stair and foot story… yeah! Even getting my teeth brushed… a lot of this resonates. Wondering if Executive Function -Catalonia might be “a Spectrum Disorder…” (just to joke about popular terminology).

Hi Stephanie, thanks so much for sharing and for your research! I am trying to understand myself, just got diagnosed Autistic 1 year ago, and I am trying to understand Shutdowns, then I learned about Autistic Inertia and Autistic Catatonia and is all spiralingin my mind, it's so confusing... I have had many episodes of freezing during moments that are traumatic and that bring a lot of fear in me, and I was thinking it was just shutdowns, especially because here in Brazil they don't have many research about it... But now I am wondering if it was Catatonia that I was experiencing, gratefully it does not occur often, but what I do have very often is Autistic Inertia, that the sintomns also looks like Autistic Catatonia... The things you said in the end, about not being able to do something and feeling stuck trying to do, also is talked about in Autistic Inertia, I do have this very often also...

I'm 39 and just diagnosed with ASD level 2. I experienced malignant catatonia (misdiagnosed at the time) 10 years ago after my mother died. Over a few days I slowly lost my ability to move, which progressed to paralysis, and resulted in me being on a breathing machine in the ICU and spent 5 months in the hospital.

I get stuck in my car for hours. It felt weird when people walked up to my car to ask if I was okay. I've often wondered if I had a form of catatonia because of my shutdown episodes, but my symptoms, though hugely time-sucking, are not as typical or extreme. Sometimes it feels like emotional exhaustion, and staring blankly seems restorative. Other times I feel like I'm physically frozen stuck in a loop in my head like a broken robot, or I seem to bluescreen, sometimes with or without awareness of feeling stuck, and suddenly an hour or 2 is gone, time-blindness confounds that exp. I often feel stuck in a movement loop doing or saying the same thing over and over. It's horrible because I desperately want to stop the loop and do other things. Or I'm just standing there not moving unable to step over a threshold, or walking in circles trying to leave the room. As much of my life as this consumes, I'm grateful that my blank state can be interrupted by someone touching me or making a loud sound. On my own, I'm in trouble, but I'm told it never takes longer than 1-2 minutes to get me to respond, the loops are not as easily dealt with. I think I had more typical type symptoms as a kid in school, that environment was horrible for me, but it just led to an IEP etc. I have ADHD, ASD, Depression, and PTSD, with dyslexia and major executive function issues, so its so hard to tell if its just a symptom of one of those or if its the catatonia. Is it the 1000 yard stare? Dissociation? Regular ADHD or autistic issues with initiation, or stimming? So many questions, but what if they are related? If catatonia does involve the autonomic system, and executive function, my challenges in those areas would explain a lot.

Minute 16. I was thinking the same thing. The Catalonia sounds like my shutdowns.

If you can simply hang up blankets it takes out the echo.

@theautisticpage

2 жыл бұрын

The blankets will work even better if hung about 4 inches from the wall.

What I was wondering was: is Autistic Catatonia, as according to Dr.Amitta Shah it is increased during severe states of stress! I notice the same: if I am highly stressed I get inactive, stop doing what I like and kinda fall into a state of hybernation. I also noticed that plant lectins seem to have a massive impact on that and since I stopped eating these I don't fall into an almost comtose state after eating but instead can go about my business. But stress has an intense impact and pressure will have an opposite effect, I just stop doing anything and when with people just stop responding basically imploding into myself, motionless.

In my experience catatonia brings on the very worst depressive/negative/self injurious thoughts. I think it's a miracle that only 90% have SIB.

"renovated"... messed with Yes!

What about human, everyday reasons for catatonia? In a culture which venerates the idea of a soul, it isn't rocket science to say that if we have a soul, which presumably transcends nature, then it follows that this life isn't all that important, an attitude which encourages dissociation. I was subject to this until I learned to embrace my birthright as a physical, natural being. But I believe that my not being a social person in the common sense, actually exacerbated this temptation to mentally pull back from the world around me. Is this not a recipe for something like catatonia in people? I'm not saying that it's the only explanation, but I AM saying that academic descriptions and definitions leave a LOT to be desired if one wants to live a fully immersed and aware life.

Congratulations for the excellent explanation! I'm so sorry to say that the flashes bother me a lot and so I need to stop watching the video.

What doctor can evaluate to see if you have autistic catatonia? It seems that primary ,er docs,and all nurses ive been too have no clue what is going on woth my autistic daughter ,including the school. Please let me know what doctor i could take her too to check if you know. Thank you.

Sounds like a long term research project

THAT IS ME

I think I have this but don't know for certain I just want someone to help me

A POLITE REQUEST Would you mind not having those flashing between the information slides. It is really problematic for those with photosensitivity, or are extra sensitivity to movement, light, flashing, unpredictable events , etc. It, for me, makes you video very hard to watch, because it will lead me to overload and meltdown or shutdown. Please could you just keep it with you talking and putting the slides up without these things? Thank you for your consideration. Donna

How did you got better

I used to go into a catatonic state when my now ex would have sex with me, meaning I couldn't tell him to stop. It still hurts to remember

Do you take any medication?

So what I’m hearing is I’ve been in Catalonia 80% of the time for a while

I understand that ABA comes from a crazy place and is effective in very limited ways. What is a good way to help someone that is in SIB mode? Human ways? I am just curious. Not an advocate for ABA/restraints.

Are these ADHD symptoms too? Cuz these really speak to me on an uncanny level.

@StephanieBethany

2 жыл бұрын

Well, things like initation and inhibition are executive function issues (starting and stopping tasks) which ADHD tends to come with major issues in. But if you're having classic catatonic symptoms, then... I don't think that's ADHD symptoms.

@sneezn.cheekan8122

2 жыл бұрын

i have been diagnosed with adult adhd and looking back i see that had some of the catatonic symptoms and episodes in the past when i was mentally at my worst and probably was going through a ptsd and was triggered. i have two sudden episodes in mind where it was noticable to people around me who were very worried and asked me what was going on. but i couldn’t speak proper: now i see that i was partly mute! it was like a switch in my head was suddenly turned on and i was partly turned off. later i interpreted it as a dissociative episode due ptsd. but it could be catatonia due to my adhd neurodivergency. it could be that you are going through something rough if you are experiencing catatonia: be kind to yourself like you would be to a dear friend, talk to someone you trust, seek help if things don’t get better and try to isolate things in your life that make you unhappy to change them. all the best to you, honky!

@sneezn.cheekan8122

2 жыл бұрын

@@StephanieBethany thank you so much, bethany! it was very insightful and actually helped!

Wait so this is more than just my freeze response?? Or is it both??? Because i get this even when there are small stressors or even just out of NOWHERE like trying to go to bed, trying to shower, trying to do a task, etc

@wywardmoose

Жыл бұрын

It's so aggravating. I've had it for years but it's gotten to the point where it's constant. It's hard to live or do thing i enjoy. I'm constantly at home with cabin fever itching to go out but not being able to leave my bed a lot. I can't even fathom ECT. Stress already killed my memory and that would make me even worse, I guarantee it. I just need help so bad. I'm on medical marijuana which does help sometimes, also on SSRIs that i would be way worse without

@wywardmoose

Жыл бұрын

I'm also not professionally diagnosed and i have no income so everything is just slowly crumbling

ECT is a nightmare

Were you prescribed medication? If so, which medication?

@jessl1934

9 ай бұрын

There's little research on what medication works for catatonia and, as per Dr Amitta Shah and my own experience, it's important to approach medication for catatonia with caution because it can be used to conceal the causative factors that lead to catatonic episodes which can often aggravate the underlying condition. Medication on catatonia generally takes two forms: prophylaxis and treatment. For treatment of an episode, you're looking at dopamine agonists such as methylphenidate, sedatives of the benzodiazepine class (especially lorazepam), non-benzos (especially Z drugs such as zolpidem, and ketamine therapy (still experimental). For prophylaxis, this is somewhat more off the beaten path than the above however you're looking at NMDA antagonists such as topiramate, amantadine, and atomoxetine or anxiolytics such as gabapentin, propranolol, clonidine, and potentially some antidepressants and antipsychotics too. You will need an adventurous prescribing doctor, likely a psychiatrist for a lot of these drugs, and good supervision but I hope this comment is helpful to you and anyone else who reads it.

Well, fuck me. Ive had this symptoms for YEARS under high stress but chalked it all up to lyme flaring.

This makes me feel more normal lol

Oh shit

One of my friends calls me a sloth 🦥 even had a blind boy walk into me cause I can freeze during social events. Sometimes I find it hard to tell if I'm breathing cause I hold my breath while trying to pay for shopping. More of a performance anxiety from Dyslexia. Don't like to be watched.

Stephanie are you married? Just curious 🙂

@StephanieBethany

2 жыл бұрын

Haha yes

The flashing transitions in your video are Triggering. Please put a trigger warning next time.

I always had this and still do I'm bedridden because of autism I'm frozen in place

Guys please help i feel frozen i can't move and can't talk what is this?? yes I'm autistc i have been bedridden for so many years my entire life because i can't move and can't talk