#autism catatonia

[zebulontheplanet]

Y’all know autism regression is different from burnout. Right? Right? Cause like…y’all should know that.

#true regression is RARE. usually comes hand in hand with autism catatonia which is rare. keep that in mind. #autism regression #autism catatonia #burnout #autism burnout #autism #actually autism #actually autistic

[stories-by-starlight]

hope all people who very alone in outside life like us have a good day today.

people who can’t go to work or school

people who never or rarely able leave house

people who never in a place long enough to know anybody

hope all okay

#post made using aac #disability #warmth #autism #autism catatonia #storybook talks

[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.

#autistic catatonia #actuallyautistic #actually autistic #autism #autistic #long post #catatonia #loaf screm

[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.

#words from my head #top surgery #autism #autistic #nonverbal #nonspeaking #aac #aacdevice #aac device #aac user #autistic catatonia

[yellowyarn]

cw, breif mention of self injuries stimming

if your a cr*pple punk whos wants to keep mentally disabled people out your spaces i want you to know that mental disabilities affect people physically too.

i want you to look me in the eyes while im catatonic and cant move anything but my eyes, while i cry over how much my had hurts from writing, while my head feels like its being split open or while im screaming and banging my head into a concrete wall because everything hurts so much and tell me im not disabled enough to talk about my physical symptoms.

i get that you want your own space to talk about your physical disabilities but why can't a mentally disabled person whose physical symptoms stop them from living their life also be a part of that?

#just because its coused by a mental illnesses or nuerodevelopmental disorder dosent mean thr physical symptoms just dont exist #fun fact not evey mentally disabled person is just a little anxious some of us cant leave our houses or even our beds #disability #MERDs #autism #sensory processing disorder #mental health #mental disabilities #physical disabilities #cripple punk #cpunk #cripple posting #catatonia

[schar-aac]

"catatonia"

image: a grey shape of a cat's head, with a red square-ish shape on each side stopping it from moving.

#disability #catatonia #autism #actually autistic #communication symbol #communication image #aac symbol #aac image #aac emoji #custom emoji

[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. 

#moderate support needs #level 2 autism #aacuser #autistic catatonia #autistic burnout #autistic regression

[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! 🤟🏻

#actually autistic #autism #autistic catatonia #catatonia #neurodivergent #adhd #audhd #ptsd #autistic thing of the day #dan.posts #autistic #autism things #autistic adult #high support needs #actually disabled

[neuroticboyfriend]

I'm not non/semispeaking so please correct me if I'm wrong. But I think the difference between nonspeaking and (episodic) speech loss is kind of similar to the difference between paralysis and (episodic) catatonic immobility.

I wouldn't call myself paralyzed while catatonic because well... I'm not paralyzed; I can move the majority of the time, but not when I'm in catatonic stupor. Am I still immobilized and unable to speak? Yeah, definitely.

But going immobile and mute during a catatonic episode isn't the same thing as being unable to speak (nonspeaking) or move (paralyzed) all the time. That doesn't mean my experience doesn't matter. It doesn't mean my experience shouldn't be communciated.

It's just that different experiences sometimes need different terms, so that all of us can be more easily understood.

#softspoonie #nonverbal #semiverbal #loss of speech #speech loss #catatonia #catatonic #neurodivergent #autistic #nonspeaking #semispeaking #disabled #disability #autism spectrum #autistic experiences #actually autistic #autistic community #autistic spectrum #autism #mutism #immobility #paralysis #paralyzed #schizospec #schizophrenic #schizo spectrum #actually schizophrenic #schizoaffective #schizophrenia

[leatheraspiration]

honestly it's moments like this, when I'm in the middle of a week-long shutdown, have a podcast to record in 5 days, and my income has tipping downwards just after moving to london, that i have to believe in god

#tho i tried praying and was only semi-verbal #but god's chilll with that #autism #catatonia #autistic shutdown

[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.

#actuallyautistic #actually autistic #autism #autistic catatonia

[zebulontheplanet]

Worst thing about experiencing catatonia and late regression? Almost no one can relate. Can count the people I know who experience something similar to me or worse then me on one hand.

It’s really lonely. Can’t talk about it. When talk about it have to remind people that it’s rare and really complex. It’s more than just freezing sometimes and regressing in some simple skills. It’s regressing in everything, it’s slowly losing your speech, it’s your support needs changing and continuing to need more support, it’s so much.

Not fake claiming. But when I hear “I think I experience that” I have to question the person because burnout can look really similar. Executive functioning can look really similar to freezing and catatonia like symptoms. Catatonia not common. It’s pretty rare. People have to realize that.

Catatonia isn’t even my big symptom, yes it’s still a very big symptom for me and it’s a big struggle, but it’s everything that comes with it, the needing for prompting, the degradation in social skills, masking skills, self care, the self isolation. So much more.

I struggle to start and complete tasks, I struggle to talk, to not be in a constant state of feeling like I’m going through quicksand. To do anything. To even write this fucking post.

It’s hard, it’s isolating, it’s ridiculous. I just wish I had more people to talk to, to relate to, to understand me. I wish I had seniors to tell me how it gets, to tell me how it progresses or doesn’t progress, to guide me. Don’t have that. It’s lonely.

#zebrambles #autism #actually autism #actually autistic #autism regression #autism catatonia #kinda a vent #vent #kinda venty #tw vent

[stories-by-starlight]

Be proud of what’s achievement for you. Maybe it would been easy for someone else, maybe they wouldn’t have even seen it as challenge. But it hard for you, and was struggle for you.

Sometimes disability can feel like losing all the time. That feeling can be worse when are losing functioning, or getting more pain, or even just in more difficult time. So don’t dismiss the wins when they happen. Even if won’t be able do it again tomorrow, be proud that managed do it today.

#warmth #storybook talks #disability #autism catatonia

[five-thousand-loaves-of-bread]

I am wondering what catatonia feels like for you, if you don't mind answering. Hope you are doing well and once again wanted to tell you how important your voice is on this site.

heheh thank you, nice to see u again

gonna talk about general info about autistic catatonia and personal experiences. all the non-personal experience info are from book catatonia, shutdown, and breakdown in autism by dr amitta shah, i very much not far in book but will summarize what i read so far.

so. experience autistic catatonia. which can look different from classic acute & severe catatonia in disorders like schizophrenia (preface/p. 17). so can't speak about that kind of catatonia. but personally also have apraxia and dissociation/dissociate from body, so have hard time separate catatonia experiences from apraxia from dissociation sometimes.

types of catatonia in autism outlined by dr shah (p19-25)

1. chronic catatonia & catatonia-type deterioration and breakdown

change & deteriorate in ability to make voluntary movements & activities, to point where affect daily functioning, independence, behavior, quality of life, etc.

also occur w regression of skill & independence

may not show classic signs of acute catatonia

2. acute catatonia (general)

aka the classic signs of catatonia

3. catatonia as shutdown

temporary shutdown of social interaction & communication during acute stress & get back to normal after stress pass

4. episodic/lifelong catatonia-type difficulties

not deterioration/breakdown but have chronic or episodic difficulty start movement & activities

5. catatonia features

not necessarily diagnostic of autistic catatonia especially if don't have deterioration or affect independence

so personally. when i say autistic catatonia, mean #1, chronic catatonia. have trouble voluntarily control own movements and also deteriorate so much.

don't really mean #3. although also experience it sometimes. autistic community call it "autistic shutdown" more and like that more because distinguish from chronic autistic catatonia.

primary difficulties & manifestations of autistic catatonia (p29)

increased slowness (in walking, response, self-care, etc)

movement difficulties (diffcult initiate, freezing & getting stuck, hesitations, difficulty crossing thresholds, difficulty stopping movement, may affect speech & eating)

movement abnormalities

prompt dependence

passivity & apparent lack of motivation

posturing

periods of shutdown

catatonic excitement

fluctuation of difficulty

personally pretty much experience all of them, except for maybe #6 posturing and #8 catatonic excitement? (also don't have a lot of trouble cross threshold like go through door and such), or at least only very mild forms of 6 & 8.

personally. get stuck a lot. have trouble start thing, from get out bed to brush teeth to do homework etc, all the big and small things. sometimes want to say thing and can't get body to say thing. may freeze mid action, like typing this post, do it very slowly because freeze in between every few words. sometimes mid doing things, just start staring and freeze in the position i hold.

biggest way to describe is just. get stuck all the time. stuck in head. freeze. body inclined to stay still, have really hard time control. so many times stay in head and stim inside head when can't stim with body because can't control body.

literally like newton's first law!!!!! objects at rest will stay at rest, object in motion will stay in motion (unless acted upon by an external force aka in this situation prompts).

need a lot of prompts. verbal or even physical prompts from other people. habit charts and behavior charts and phone reminders and even alarms don't work. need someone prompt.

autistic catatonia + communication difficulties mixed together means that rarely initiate conversation (either no interest or catatonia can't), need specific concrete questions, can't answer general vague big questions. literal stuck when asked big vague questions. sometimes stop talking/freeze when finish answering the explicit part of the question bare minimum and physically cannot continue elaborate unless someone ask another follow up question for prompt (other times don't recognize need to say more but that's more autism communication differences).

somedays good days and body more unlocked. many many many days body stuck.

not really fun.

#autistic catatonia #actually autistic #actuallyautistic #level3 autism #high support needs #level 2 autism #medium support needs #moderate autism #catatonia #nd #asd #autism #autistic #actually neurodivergent #loaf screm #answered

[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).

#words from my head #autism #autistic #nonverbal #nonspeaking #actually nonverbal #high support needs #trauma #bad memories #autistic catatonia

[autismaccount]

I've reached 35 responses! They're very interesting, but the sample size is still small, and I don't think it's at all representative of the Tumblr autism community. If I can't reach at least 100 responses, I don't think I'll be able to analyze Tumblr community views on support needs in depth. I'll still post descriptive statistics for the overall sample, but I won't have the statistical power to do anything else.

I'd really appreciate if everyone could help by taking the survey and reblogging this post to their followers!

As a reminder, the survey is meant to understand how people use support needs labels. For example, what makes someone low support needs and not moderate support needs? The survey also helps show what the community is like in general in terms of demographics and experiences!

A summary of the current survey results are under the Read More. Again, especially if a community that you're in is under-represented, please help by spreading the survey link! I'd especially love to hear from more people AMAB, racial/ethnic minorities, people who are not yet diagnosed or were diagnosed as adults, and higher support needs individuals!

Age: Most participants are young; 60% are under age 25%, and 20% are under 18.

Gender: Over half of the sample is AFAB nonbinary, almost 1/3 is trans men, and almost all of the remainder (14%) is cis women. Only 2 people who are AMAB have taken the survey.

Race/Ethnicity: Non-Hispanic White people are very over-represented, making up 82% of the sample.

Diagnosis: 57% are professionally diagnosed, 20% are informally or soft-diagnosed, and 14% are seeking a diagnosis. Only 9% are neither diagnosed nor seeking a diagnosis.

The most common diagnoses are ASD with no level (33%), level 1 ASD (25%), and "mild autism" (13%).

16% were diagnosed before age 8, 24% between ages 9 and 15, 32% between ages 16 and 18, 12% between ages 19 and 25, and 16% over age 25.

Autism Support Needs: The most common self-identified support needs label is "low-moderate" (43%), followed by low (23%) and moderate (14%). Most would benefit from but do not need weekly support (31%), only need accommodations and mental health support (17%), or rarely need any support (6%).

Autism Symptoms: On a severity scale of 0 (not applicable) to 3 (severe), the average is 1.7 overall, 1.8 socially, and 1.7 for restricted-repetitive behaviors. The most severe symptom is sensory issues (2.1), and the least severe are nonverbal communication and stimming (both 1.5).

83% are fully verbal, and 97% have no intellectual disability.

38% can mask well enough to seem "off" but not necessarily autistic. 21% can't mask well or for long.

Most experience shutdowns (94%), difficulties with interoception (80%), meltdowns (71%), alexithymia (71%), echolalia (69%), and autistic mutism (66%). Very few experience psychosis (14%) or catatonia (11%).

Self-Diagnosis: 20% think it's always fine to self-diagnose autism, 29% think it's almost always fine, 31% think it's only okay if an assessment is inaccessible, 71% think it needs to be done carefully, and 11% think it's okay to suspect but not self-diagnose.

15% think it's always fine to self-diagnose autism DSM-5 levels (including if the person has been told they don't have autism), 15% think it's fine as long as autism hasn't been ruled out, 21% think it's almost always fine, 18% think it's only okay if an assessment is inaccessible, 36% think it needs to be done carefully, and 36% think it's okay to suspect but not self-diagnose.

26% think it's always fine to self-diagnose autism support needs labels (including if the person has been told they don't have autism), 29% think it's fine as long as autism hasn't been ruled out, 37% think it's almost always fine, 29% think it's only okay if an assessment is inaccessible, 43% think it needs to be done carefully, and 6% think it's okay to suspect but not self-diagnose.

Disability: 71% feel disabled by autism, 17% feel disabled by another condition but not autism, and 11% are unsure.

Comorbidities: The most common mental health comorbidities are anxiety (68%), ADHD (62%), and depression (56%).

The least common mental health disorders are schizophrenia spectrum disorders (0%), bipolar disorders (3%), tic disorders (6%), substance use disorders (6%), personality disorder (9%), and OCD (9%).

The most common physical health comorbidities are gastrointestinal issues (29%), connective tissue disorders (29%), autoimmune disorders (24%), neurological disorders or injuries (24%), and hearing/vision loss (24%). All others are below 20%.

Overall Support Needs: When considering comorbidities, the most common self-identified support needs label is moderate (37%), followed by low-moderate (31%) and low (17%).

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