#autistic catatonia

[five-thousand-loaves-of-bread]

what is (chronic) autistic catatonia?

// why specify “autistic” catatonia? //

catatonia most common associate with schizophrenia, but increase realize also happen in things like bipolar & depression.

if look at some of typical catatonia diagnostic criteria in DSM 5 (but in easier words): catalepsy & waxy flexibility, grimacing (hold same stiff facial movement), mutism, echolalia, echopraxia (copy movement), exaggerated mannerisms, stereotypies/repetitive movements, etc… wait! some of these things happen in autism!!! (like 7 out of total 12 can be seen in autism)

this is why important to know how recognize catatonia in autism. because overlap.

catatonia in schizophrenia most common start fast and get worse fast. but chronic autistic catatonia typically slow onset and slow but visible deterioration. (always have exceptions though)

not know a lot about schizophrenia catatonia, so this post largely focus on autism. everything below, when say “catatonia” or “autistic catatonia,” mean chronic autistic catatonia with deterioration.

// before move on— //

sometimes professionals do connect autistic shutdown with/as catatonia or catatonia episode or catatonia-like episode to draw connection. this not talk about that. this about chronic ones with deterioration. personally for community identity purpose i don’t enjoy (already have term for shutdown). but personal opinion aside, again this about the temporary vs long term all the time. if experience temporary shutdown, remember to leave space for and not same as those of us deal with chronic autistic catatonia.

important to distinguish from autism because autism and catatonia share many symptoms. (for example, physical stimming or “stereotypies” is autism diagnostic criteria AND catatonia criteria). autistic catatonia should only be suspected IF have new symptoms OR change in type & pattern of old symptoms. cannot. stress. this. enough. again. it not about IF you have these symptoms it’s about WHEN and HOW and CHANGE. it's about NEW.

and. please do not diagnose self based on one tumblr post. yes even if i do extensive research and cite sources and have lived experience. many many many disorders look similar. am all here for educated self diagnosis because medical system inequitable BUT am also sick of every time write this a bunch people comment “oh never heard this this is so me.” one tumblr post not educated self dx. it not a cool new thing to add to carrd to hoard as much medical label as can, it miserable it makes my life hell it not a joke it not cool. not every autistic have chronic catatonia, not every shutdown means chronic catatonia, even if you autistic and see these signs, may be separate unrelated disorder altogether, like Infectious, metabolic, endocrinological, neurological, autoimmune diseases, all can see catatonia (Dhossche et al, 2006). some of you all will read this and truly think this is answer been looking for so long—great! still, please do more research.

// chronic autistic catatonia with deterioration and breakdown //

the key defining symptoms of chronic autistic catatonia is gradual lose functioning and difficulty with voluntary movements (shah, 2019, p21). “gradual lose functioning” will come with regression in independence & ADLs & quality of life. it usually gradual, chronic, and complex. but can vary in severity. some need prompts on some day & some situations, while others need prompt and even physical assistance for almost everything.

how common? have seen statistic estimate from 10% - 20% of autistic people adolescents & above experience chronic autistic catatonia.

typical onset for autistic catatonia is adolescence. some study samples is 15-19, some as early as 13. some professionals think this autistic catatonia may be a reason for many autism late regression (Ghaziuddin, 2021).

can happen regardless of gender, IQ (yes shitty), “autism severity/functioning labels” (is what most studies use, so i keep, but yes have issues, probably also mean happens regardless of autism level 1/2/3 and support needs before catatonia, but need more research to confirm since these thing don’t equal eachother).

// primary symptoms //

from book "Catatonia, Shutdown and Breakdown in Autism: A Psycho-Ecological Approach" by dr amitta shah, recommend read at least first two chapter and appendix.

1. Increased slowness

often first sign but not always

periods of inactivity or immobility between actions which appears as slowness, e.g walking, responses (verbal & body), self care, mealtime, etc

2. Movement difficulties (freezing and getting stuck)

difficult initiate/start movement

freeze or become "stuck" in middle of activity for few seconds to minutes

hesitate & "to and fro" movements

difficulty cross threshold/transitions like door way

difficulty stop action/movement once started

affect speech content, fluency, & volume

eat & drink difficult (like movement for fork & knife, chewing and swallowing, etc)

spend long time in one place

(new) ritualistic behaviors

3. Movement abnormalities

repetitive movements like in tourette's & parkinsons

e.g. sudden jerky movement, tremors, involuntary movements, blinking, grimacing, unusual & uncomfortable postures, locked in postures, increase in repetitive movements, etc.

4. Prompt dependence

may not be able to do some or any movement/activity, unable to move from one place to another, unable to change posture, etc without external/outside prompt

5. Passivity and apparent lack of motivation

look unmotivated & unwilling to do stuff, include activities used to like, probably because can't do voluntary action or have trouble with request and make decison.

6. Posturing

classic catatonia symptom of being stuck in one posture, sometimes for hours

7. Periods of shutdown

8. Catatonic excitement

episodic & short lasting

e.g. uncontrollable & frenzied movement and vocalizations, sensory/perceptual distortions, aggressive & destructive outbursts that not like self

9. Fluctuations of difficulty

e.g. some days better can do more need less prompt! other days worse. sometimes emergency can act as almost like a prompt! but fluctuate doesn't mean difficulty voluntary

// secondary difficulties //

Social withdrawal and communication problems

Decline in self-help skills

Incontinence

‘Challenging’ behavior

Mobility and muscle wastage

Physical problems

Breakdown

// autism breakdown //

can be in addition to autistic catatonia. can look like autism is getting worse, even though autism by itself not progressive disorder!

i also call this autism late regression. separate between autistic catatonia & this not very clear, not enough research.

1. exacerbation of autism

1a. increased social withdrawl, isolation, avoidance of social situations

1b. increased communication difficulties

1c. increased repetitive and ritualistic behavior

2. decrease in tolerance & resilience

easily disturbed, irratable, angry

3. increase in "challenging" behaviors

e.g. self injurious behaviors

4. decrease in concentration & focus

5. decrease in engagement & enjoyment

// treatment //

for catatonia (autistic or not), typical treatment is lorazepam and/or ECT.

specific to catatonia in autism, Dhossche et al. (2006) separate it to mild/moderate/severe and give recommend treatment according to that (do not come here and argue about severity labels, because fuck! mild depression and severe depression of course have different suggested treatments and severity important to know. Remember we talk about autistic catatonia).

note: this is one paper! not the only way! yes have problems like most psych/autism papers, just here to give example (of range of symptoms and treatment route!). NOT MEDICAL ADVICE. (not even endorsement)

mild: slight impairment in social & job things without limit efficiency as a whole (essentially still able to function for most part but difficult).

moderate: more obvious struggles in all areas, but ambulatory and don't need acute medical services for feeding or vitals

severe: typically medical emergency, acute stupor, immobility for most of day, bedridden, need other people help feed. also malignant catatonia which can be life-threatening (fever, altered consciousness, stupor, and autonomic instability as evidenced by lability of blood pressure, tachycardia, vasoconstriction, and diaphoresis, whatever any of that means)

the "shaw-wing approach": very brief summary, keep person active and do thing they enjoy, use verbal & gentle physical prompts, have structure & routine.

lorazopem challenge: take 2-4 mg of lorazopem to see changes in next 2-5 minutes. if no change, another 1 mg and reassess

lorazopem trial up to 24 mg. (note difference between challenge & trial)

bilateral ECT, last resort.

mild: "shaw-wing approach" -> 2 week lorazopem trial if no imporvement in 1 month -> if effective, do both, if not, just shaw-wing approach

moderate: depends on prefernece, either shaw-wing alone or shaw-wing and 2 week lorazopem trial -> if not effective, do 2 week lorazopem trial if havent already -> if not, bilateral ECT

severe: lorazepam challenge test -> if not effective, bilateral ECT; -> if lorazopem challange positive, 1 week lorazopem trial -> continue if successful, bilateral ECT if not.

can sound extreme, but rememeber for many severe catatonia (autistic or not), it is medical emergency. can be life-threatening. there's no/not a lot of time.

it possible to make partial recovery, as in get better but not to before catatonia. but overall, many permanently lose previous level of functioning.

references

Dhossche, D. M., Shah, A., & Wing, L. (2006). Blueprints for the assessment, treatment, and future study of Catatonia in autism spectrum disorders. International Review of Neurobiology, 267–284. https://doi.org/10.1016/s0074-7742(05)72016-x

Ghaziuddin, M. (2021). Catatonia: A common cause of late regression in autism. Frontiers in Psychiatry, 12. https://doi.org/10.3389/fpsyt.2021.674009

Ghaziuddin, M., Quinlan, P., & Ghaziuddin, N. (2005). Catatonia in autism: A distinct subtype? Journal of Intellectual Disability Research, 49(1), 102–105. https://doi.org/10.1111/j.1365-2788.2005.00666.x

Shah, A. (2019). Catatonia, shutdown and breakdown in autism: A psycho-ecological approach. Jessica Kingsley Publishers.

[perplexingluciddreams]

Today is GP appointment for talk about top surgery. I am very very anxious.

Mum say to write a button on AAC about why top surgery is so so important for me. Good idea, but it is very hard right now because brain is shut down anxious in Wait Mode. And worried that I will be so stuck and overwhelmed in appointment I will not be able to even use AAC. (Usually I cannot communicate much at all in appointments, especially not out of house appointments. Mum or Dad do all talking).

Als, left arm have very much pain right now 😭🤬. Left wrist pop out slightly (bones move a bit in a bad way) recently when I take hoodie off, so I wear wrist brace more... that makes bad sensory but support wrist. But also upper arm muscles is angry from lift arm and use it so much especially with edit new AAC.

AND laptop will not wake up will not charge, so cannot watch Supergirl DVDs. That just another thing add to already difficult day, change routine slightly more.

I am in swing right now, helps with regulation and routine. But stuck here for now - could not change task or transition for any reason in the world right now. Hope I am less stuck by time of appointment.

[silentdreamystars]

I don’t hate having autism. I just hate the meltdowns, the mental and physical health issues, the regression, burnout, catatonia, communication challenges, sensory issues, the isolation, the way people view me. I love being autistic and I also really fucking hate it. I wish I was normal sometimes. 

[big-boah]

Autistic Thing of the day:

Autistic Catatonia 😵

I made a TikTok on this too with the same info (link here!)

I wanted to talk about autistic catatonia, which isn’t something I’d heard about until I researched it on my own. When I brought it up to my doctor, she said it made perfect sense.

Autistic catatonia affects, at minimum, about ten percent of autistic people. And the best way I can describe it is “getting stuck.”

I’ve dealt with this my entire life, I plan to do something, or respond to someone, and my mind goes blank and I just can’t move. If I fight it, my anxiety goes through the roof. I can’t talk or respond, only maybe stim a little or communicate using eye contact or eye gaze. For me, it can last anywhere from a few seconds to several hours.

Unfortunately, my bodily functions still continue when I’m stuck, so I have to be guided to the bathroom, need help in the shower, and kept out of harm’s way. My partner and I both have ADHD and have a similar thing happen but can still kind of move even if it's difficult, but that’s more executive dysfunction.

This is also a little different than derealization and depersonalization in that most people still feel entirely like themselves when these episodes happen, your inside mentality is the same. I can carry on commentary in my head during these episodes and I feel like I'm myself, just stuck.

Being catatonic is almost like every cell in my body is frozen in time. I know what’s going on around me, but my brain just can’t make that connection and that spark of purposeful movement doesn’t make it outside of my own mind. I wish there was a better way to explain it.

A lot of autistic people experience this differently. Some people have this and believe it's a shutdown (which is a little different because in shutdowns usually you can communicate.)

People with mild catatonia may feel like they've "gone nonverbal" and also feel physically stuck, although others can assist you to move if needed.

A lot of people have this experience when they're frightened of experiencing high levels of overstimulation. I've always said it's like my brain pressed pause on my life, because I wouldn't.

If you know someone who goes through something like this, make sure they stay safe, hydrated, and make sure to check in on them even if they don't respond. I like when my partner acts like nothing’s up, he will just hang out with me there. Some people like touch when they get stuck while others don’t. This can happen no matter what your support need level is in general. This actually happens often enough where it increases my support need level, I need to be supervised anyway. 😅

Once I realized this was a feature of my autism, I was able to come up with a plan with my loved ones because it happens about 2-3 times a week. Ever since I started taking ADHD meds it happens less, and research has found that benzo medications can actually prevent this from happening and help the episodes. Research needs to catch up to the rest of us on this one!

But if you experience this or periods of hyperactivity where you also feel like you can't interact with others on your own command, it may be autistic catatonia.

Hopefully this helps someone! 🤟🏻

[chronicsymptomsyndrome]

Fuck audhd paralysis and catatonia and executive dysfunction my dogs deserve to go outside and play but I can’t stand up they’re just eagerly sitting there whining and staring at me because I put my coat on but then made the mistake of sitting down and I feel like I’m torturing them I want to stand up so bad but I couldn’t stop scrolling so I made this post anyway comorbidities are so cruel

I just need to take them outside for like a minimum of fifteen minutes and if I cannot bring myself to actually play with them I at least need to allow them the opportunity to run around on their own and sniff the grass for a bit.

If I get a decent amount of rest soon maybe I can walk them. It’s really hard because I’m only strong enough to walk one of them at a time (I have two) and they’re trained not to pull or bolt at squirrels etc but if anything went wrong idk it just makes me nervous, the two of them could easily overpower me. So I have to blend something to spread onto a silicone mat so the one left at home doesn’t go absolutely insane with jealousy and all that food prep is so much extra work then I have to get that set up for one of them while I walk the other one and that’s a whole extra step again and then I have to do that part all over again and I also the. have to clean up the food mess and 8 paws. That’s so much stuff. Plus two walks for me. I should be going on zero walks probably, at least without a mobility aid. But it feels cruel and abusive that I hardly every walk my dogs anymore.

Im not pure evil they spend a lot of time chasing tennis balls in the back yard which takes care of physical exercise in general but it’s not the same kind of stimulation as going for a walk and taking in new sensory input every day. It breaks my heart but it’s also still a much better life than they would have at a shelter like where we rescued them from. And they were both returns, so this could very well be genuinely what’s best for them in the grand scheme of things. That’s what I always tell myself

Anyway. For now I just wanna get up and play with my dogs and get other things done, like eat for example, but I’m stuck sitting down 🙃

[ifihadmypickofwishes]

I read Catatonia, Shutdown, and Breakdown in Autism: A Psycho-Ecological Approach and (almost) all I got was more questions.

1. In what ways does autistic catatonia differ meaningfully from Functional Neurological Symptom Disorder? There seems to be substantial overlap in some areas, namely a substantial reduction in impairment when the person is distracted and occurrence more often in people with "passive" temperaments.

2. When someone is both autistic and psychotic, how do you tell where the catatonia primarily stems from? The book seems to assume that if someone is also schizospec, then the catatonia is automatically a product of that, but I'm not sure that's the case.

3. The book says autistic catatonia can be the result of overmedication, and to immediately look at stopping or lowering meds as the first step. Not everyone can alter their medication regimen. Is the treatment plan in the book still effective for people who cannot change their meds, and if so, is it effective to the same degree?

4. Is the occurrence of autistic catatonia in autistic people with rare genetic neurological/neurodevelopmental disorders different from the general autistic population?

Would love for there to be evidence-based answers to these at some point.

[semispeakingautie85]

Occasionally I loose the ability to move my limbs, like I tell my arms to move but they refused.

But as soon as I have instinctual will to move like I have a itch then I will move no problem. I am usually tired when this happens but it doesn’t happen always when I am tired.

Is this what autistic inertia or catatonia is? It might just be a fatigue thing I don’t know.

[thein273]

So I just found out a thing. This may not be true for every autistic person who loses speech (it might genuinely be Selective Mutism, although that condition is marked by different situations leading to the ability or inability to speak--i.e. at home they can talk just fine, in other demanding social settings they can't). But apparently there is a thing called autistic catatonia.

If you do not experience periods where you literally can't talk or do things but don't appear to be melting down to an outside observer, I promise you this will make you feel seen. If you don't, read it and stop expecting us to function normally when our brain is literally not fucking working the same.

[canarys-call]

Last talked about catatonia, brief mention autistic catatonia

Dunno if have, guess so from what research could find but will ask doctor later

Maybe talk here will help! Organize thoughts

Sol describe as stuck all time, stuck and slow. Always been hard get body move and listen. Past easier to handle but gotten worse recently

Very hard to describe, imagine every time you move big or small, body doesn't listen. When it finally does at snail pace. That's Sol's life moving like snail, make Sol mad but can't control

Also stuck minutes hours still unmoving. Like said in other post have check if bigger catatonia

Can affect voice too, speech harder can't force out and hard do thing unprompted. Need told things like get up grab food drink water.

Dunno what cause or when started

Some days better, move easier do more, others not. Movement also worse when tired. If find out more will make post

[five-thousand-loaves-of-bread]

see some people misuse term so just reminder chronic autistic catatonia & autistic shutdown different

experience autistic shutdown don’t necessarily mean you have (chronic) autistic catatonia

reblog this instead

[perplexingluciddreams]

Always feel so guilty when have to use emergency button at night...

(I have call button in my bedroom, make alarm noise in parents room).

I need it because I will not ask for help. I freeze when I panic or have bad situation and just stuck there. Sometimes because scared anxious feel "not allowed" or "will get in trouble". Sometimes because don't even have awareness that ask for help is option. Sometimes because even if maybe could get over scared-ness and aware to think to ask, just not able communicate it.

It is not my fault to have accident and need help to clean up and change clothes. I know that. But feel like burden every time I have to "bother" someone for help me with something I can't do alone.

(This only applies to personal feelings in specific situation, not saying "need help" is overall bad or burden).

Always bring up bad memories of get in trouble for "bother" someone, always "in the way", always something to "deal with" or "handle". Or, more often, just get stuck in situation, left alone no help, don't have ability/skills to do it. So then just have to cope.

Even though dad come and help this time and always reassure "don't need to say sorry", when I am alone afterwards I can only remember all the bad scared times when I was younger, alone.

This is only what I mean when I say I wish I don't have as high needs, or say feel like burden, BUT also say don't want to do things alone (because scary bad loud brain with memories AND also unable so no point to think about).

[silentdreamystars]

am I non-speaking/non-verbal ?

I have been considered minimally speaking (semi speaking, with short term speech loss and selective mutism) most of my life, but due to a regression (likely due to autistic catatonia) over the last 3 years I have lost my ability to speak. Medical professionals refer to me as non verbal. But I’m terms of respecting those with non-speaking/non-verbal autism (like my cousin, it feels wrong because I’m don’t have non verbal autism technically). Kind of unsure what term I should use for myself. 

To clarify I have consistently lost a significant amount of speech capabilities over a long period of time, I have not spoken more then a few words in 6 months. 

[autism-and-co]

Welcome! This is a blog I created centered on autistic catatonia, as it is a very unknown disorder, yet incredibly common, and often misdiagnosed. As a person with this disorder, I want to spread awareness about it, so people understand it, and those who might have it can finally get some real answers.

This blog will also touch on other mental illnesses, such as the normal part of autism, PTSD, OCD, GAD (an acronym for “generalized anxiety disorder”, informally known as anxiety), depression, and possibly others.

Feel free to send asks inquiring about mental illnesses, particularly those listed above- I will answer to the best of my ability, and tell you directly if I’m unsure or don’t actually know. I want to be as helpful as possible, and that includes complete honesty.

Disclaimer: I am not a doctor, nor do I have any kind of degree. A good chunk of the information shared here will be what I have learned from personal experience in living with it, and what my psychiatrist and various other doctors and therapists have taught me.

Thank you for reading through this, and please, always feel welcome to ask whatever relevant questions you need answers to- I assure you that there is no need to be anxious, and no matter how nerve-wracking it may feel, I will do my best to avoid triggering any RSD symptoms or invalidating anyone who comes looking for help.

A small, final side note about this blog: in addition to what I have stated above, I will likely also use this blog to reblog posts that talk about relevant disorders, or to post various forms of art I have created that represent them; for example, poetry or drawings.

And finally: here are the tags I will be using for different topics I cover, in case there are any you wish to block (under the cut to prevent this post from stretching on too long):

My explanations of disorders and information about them: #Heron Explains

My advice and teachings on coping with a given disorder, whether the broad category or specific (ex. anxiety disorders vs OCD): #Heron’s Coping Techniques

Reblogged posts: #mental health reblogs

Any form of art representative of a mental disorder: #art of mental illness

Anything related to autistic catatonia: #autistic catatonia | catatonia

Anything related to autism: #autism | #actually autistic

Anything related to PTSD: #PTSD | #PTSD support | #actually PTSD

Anything related to OCD: #OCD | #actually OCD

Anything related to GAD: #anxiety | #anxiety disorder | #GAD

Anything related to depression: #depression | #actually depressed

Anything relating to a mental illness that is not one of the above: #misc. mental illness

[leatheraspiration]

so i was feeling mopey this morning about being in a catatonic period and being unable to socialise and stuff. but then i remembered what my friend said to me a few years ago, that sometimes it's only when we feel truly safe that our bodies can properly break down.

going through the process of flat hunting in london at the end of last year was SO stressful and i was breaking down crying loads and pushing through it a lot. so it was inevitable there would be a 'rest kickback' at some point. that's probably what this is now - which is a good thing! because it means that i feel safe and settled enough in my new flat to be able to go full slug mode and rest for several weeks.

it's honestly such a simple reframe but it makes me feel a lot better. mainly because i can then see my sickness/need for extreme rest as something positive rather than some awful doomsday clock to my becoming too non-functional to live independently. and it is is an act of love to myself to spend days and weeks inside playing video games, napping, eating food… i don't want to just see that as some necessary evil.

[zebulontheplanet]

I want people to understand, when I say most of my day is spent in bed, I mean that most of my day is spent in bed. That isn���t bad.

[volant-endeavor]

Autistic catatonia keepin a motherfucker down