#level 3 autism

[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%).

[yellowyarn]

i always see sensory avoidant autistic people talking about how their favourite foods are all plain carbs but where are the sensory seeking autistics who live on garlic and spicy foods? the ones who will eat a straight lemon and hate buttered noodles.

[zebulontheplanet]

Im sorry, but a TON of you know fucking nothing about level 3 autism.

A lot of you like to go “but I can’t live fully independent and need help with some things so I must have level 3 autism 🥺” I can promise you that you being able to live with your partner and semi independently does NOT mean you have level 3 autism.

So many people have been watering down level 3 autism. And self diagnosing themselves with it because they need a bit more support then those people on TikTok need and it’s TIRING. I can ASSURE you that the majority of autistic people need more support than those big creators on TikTok because a LOT of them aren’t even realistic with their own support needs.

Level 3 autism means you need a LOT of help. It’s called needing very substantial support for a reason. People with DIAGNOSED and even UNDIAGNOSED level 3 autism are not only visibly autistic in many ways, but need a lot more support than you realize. A lot of level 3s are nonverbal or semiverbal (although some are verbal). A lot of level 3s need support in EVERY. ASPECT. OF. THEIR. LIFE. this doesn’t mean just reminders to bathe and reminders to take their medication.

No, this means literally someone hand feeding them. Someone physically bathing them. Clothing them. Handing them their medication and watching them take it or physically having to put it in their mouth. Constant care. This means a TEAM of carers and support staff. A lot of level 3s end up in group homes, residentials, Institutions. A lot of level 3s need help using the bathroom and this doesn’t mean just simply reminding them, no this means physically walking them to the bathroom and helping them in every step.

Not to mention the comorbidities that commonly come with level 3 autism.

A lot of level 3s don’t know how to use the internet. Although I’ve met a few who do and it’s totally possible! A lot don’t.

Stop fucking doing this. Look at the DSM5. Look at higher support needs people. Ask around. Don’t just say Willy nilly that you have level 3 autism. You needing support is completely valid, but taking the label from people who are more disabled then you it is not ok.

[cryptid-aac]

Love post for ppl who type " weird "

Love you ppl who type " weird " because use AAC to type (hi, sometimes)!!

Love you ppl who type " weird" because have language disorder (hi)!!

Love you ppl who type " weird " because have I/DD!!

Love you ppl who type " weird " because have severe autism/higher support needs autism/Level 3 autism/however you identify (hi)!!

Love you ppl who type " weird " because English not your native language!!

Love you ppl who type " weird" because rushing thoughts (hi)!!

Love you ppl who type " weird " because blind!!

Love you ppl who type " weird " because that's how brain thinks!!

Love you ppl who type " weird " just because!!

Love you ppl who type " weird " because semiverbal (hi)!!

Love you ppl who type " weird " because nonverbal!!

Love you ppl who type " weird " for any reason not mentioned or no reason or reason that not know of!!

[kazandautism]

It okay if you want to get rid of your autism.

Lot of people on internet say that autism great and that they like it. That okay too, everyone allowed own opinion on self.

But not make you bad person if you don’t like it.

It hard having meltdowns and sensory overload. Hard to need others to care for self.

You allowed to dislike your autism.

[willtheweirdrat]

Here's to the autistics who are "way too aggressive". Here's to the autistics who get angry easily. Here's to the autistics who are impulsive. Here's to the autistics who have destructive meltdowns. Here's to the autistics who's anger ruins friendships/relationships. Here's to the autistics who can't control their emotions. Here's to the autistics who are bitter and mad. I see you, I love you (platonically), and I hope you have a great day.

[dysmotility]

please please please don’t forget to include intellectual disability, psychosis / schizospec disorders, level 2-3 autistics, folks w dissociative disorders, and others with “severe mental illness” from ur conversations about mad liberation.

these are some of the most vulnerable and disenfranchised mad people, and we need to give them a voice.

these are the places where liberation is needed the most

[stal3bread]

I think that special interests are actually a disabling part of autism

I'm tired of people (allistic and autistic) saying that it's bad that special interests are 'pathologised' because passions are good. This is because that comes from a fundamental misunderstanding of what a special interest is. Special interests are not just things you like a lot, they are 'highly fixated interests abnormal in intensity or focus'. For me (and pretty much everyone with autism I've asked about it), this means that special interests are basically your whole life. For me, my special interest is ASD. I think about autism all the time. It's the only thing I find interesting, and every thought I have can be linked to autism in some way. This is pretty disabling to me because it makes it way harder to talk about and do stuff that isn't related to my special interest.

It makes making friends really hard because, on top of my social challenges, I also don't know how to talk about anything other than my special interest, and I will bring the conversation back to my special interest if I feel comfortable around someone, and just not talk to someone if I don't feel comfortable around them. It also makes doing the things I need to do in life (such as doing work for uni, taking care of myself, cleaning my living space, etc) so much harder because my brain doesn't think it's interesting in the slightest and therefore I have absolutely no motivation to do them.

Maybe my special interests are more extreme than other people's. I wasn't diagnosed with a level, I just got a diagnosis of ASD, but I'm probably on the higher end of level 1, possibly on the lower end of level 2 but I can't really figure that out for myself. However, the ASD diagnostic criteria in both the ICD-11 and DSM-V state that your traits of autism must be causing 'clinically significant impairment' (i.e. they must be disabling) for you to qualify for an ASD diagnosis.

[the-rest-is-silenc3]

shout out to the people who DO look autistic

to the people who have different facial features from autism or conditions that often occur with autism

to the people who need padded equipment, gait trainers, or other highly noticeable aids

to the people who are ignored in favor of talking to their parents/guardians/carers

to the people who have been told they shouldn’t be seen in public because of their autism

to the people who are told they don’t exist by low support needs autistics

there is a place for you in the autistic community <3 [heart]

[five-thousand-loaves-of-bread]

there nonverbal level 3 severe profound autistic kids (many with ID) who will never ever able functional communicate even with best therapy best support best assistive device out there

there nonverbal level 3 severe profound autistic kids (with/without ID) who later learn communicate and/or mouth speak but many outside behaviors still look same still high support needs

there nonverbal level 3 severe profound autistic kids (with/without ID) who later learn how mouth speak who now adult cannot ever tell if autistic at all not to mention ever was diagnose level 3 severe profound nonverbal

there kids without functional communication who grow into adult without functional communication

there kids without functional communication who grow into nonverbal adult who use AAC communicate

there nonverbal kids who grow into nonverbal adults

there nonverbal kids grow into speaking adults

how your kid at six not mean will be same as adult.

but also there people who nonverbal level 3 severe profound at 6 and still largely similar at adult.

and also regardless how future adulthood look, still need advocate for those diagnose nonverbal level 3 severe profound six year old

one not erase other. both true.

[meowtismz]

Daily reminder is ok not be HSN (high support needs) or level 3 autism !

Is ok BE able do things by self properly !

Is actually good, be able learn and adapt to certain point !

Please stop romanticize us and our hardships :(

Us higher support needs not som goal or something you want be.

Please if genuinely think we have needs more often met because have more needs need wake up to real world.

[yellowyarn]

i love you autistics who don't have special interests

I love you autistics without sensory issues

i love you autistics who are hyposenstive

i love you autistics who are both hypo- and hypersensitive

I love you autistics who hate routine

i love you low empathy autistics

i love you high empathy autistics

I love you autistics with lots of freinds

I love you autistics who are hyper verbal

i love you autistics who make lots of eye contact

i love you autistics who can't mask

i love you autistics who dont know who they aren't behind their mask

i love autistics who are "childish"

i love autistics that have never had a meltdown

i love autistics with catatonia

i love autistics with intellectual disabilities

i love autistics with Anxiety and/or Depression

i love autistics with Psychotic Disorders

i love autistics with Bipolar Disorders

i love autistics with Obsessive-Compulsive Disorders

i love autistics with truma Disorders

i love autistics with Dissociative Disorders

i love autistics with Eating Disorders

i love autistics with Somatic symptoms Disorders

i love autistics with Sleep Disorders

i love autistics with addictions

i love autistics with Personality Disorders

i loved autistic systems

i love autistics with multiple disabilities

i love autistics that can't work

i love autistics that cant leave their house

I love autistics who can't live alone

i love autistics who use AAC

i love poc autistics

i love people with autism who prefer person first language

i love autistics who use function labels

i love autistics with outdated diagnoses

i love autistics who were/are misdignosied

i love self diagnosed autistics

i love all autistic people

[zebulontheplanet]

I’m really really mad so excuse my language.

People from my last post on level 3 autism are really starting to annoy me. The whole “haha level 3s aren’t even cognitively aware they’re level 3 and are basically just brains in space” talk is seriously scary.

Y’all do realize these are people with actual ability to form coherent thoughts? Right? These are people who..are people. I knew someone in highschool (I was homeschooled but involved with the local highschool for sports and extracurriculars) who was level 3 autistic. We weren’t close but I knew him. He WAS aware he was different. Do I know if he knew he had autism? No. But I kinda assume he does because people say it to his face. People would make him painfully aware that he was autistic.

I’ve met many level 3s. Both online and in person. It is a LARGE spectrum of people with level 3 autism. Some have higher support needs than others, some nonverbal, some semiverbal, some minimally verbal. Some have more things, like intellectual disability and cognitive problems and cerebral palsy, and so many other things and I KNOW THEM.

So saying “all level 3s aren’t even aware they’re level 3 and are basically cognitively a toddler” is fucking ridiculous. Get in your lane. Shut up. Know a few who do use the internet with help. Do know a few who are totally aware what they have. Know a few who don’t.

Some of y’all really need to expand your research and your friend groups. There are even a few level 3s here on tumblr. FUCKING. FIND. THEM. If you search the tag you might be able to find a few.

Overall, just stop being gross and actually do some research. If you’ve met a level 3 autistic, then you’ve met one level 3 autistic.

[autibear]

stop calling other autistics ableist for treating their autism like a disorder

I don't care if your autism doesn't make you feel disabled you're a minority and you don't get to call the terminology other autistic people use ableist. Especially terms that are useful for level 3/high support needs autistics

If you don't like the levelling system or support labels and think it's the same as functioning labels don't use them on yourself. Stop calling them useless ableist and harmful

People are pretending this doesn't happen anymore but there are still posts and articles and videos everywhere trying to erase terminology useful to many mid-high support needs

If you think it's bad to talk about our differences you're wrong. We can both be a diverse community and have differences that we label. If you want to pretend we're all the same just because we're autistic you've only spent time with autistic people like you

Some autistic people need levels to understand their own needs or find other autistic people they can relate to

Some people call themselves a person with autism instead because that's what they're comfortable with

Some autistic people don't like that they're autistic and find it hugely disabling and struggle to find positives in it

Some autistic people say they are severely autistic because of how disabling their autism is

Some autistic people look autistic and cant mask

Some autistic people still use functioning labels on themselves because it's familiar and helps them and it's what they're comfortable with

Some autistic people say they have a disorder condition disability or ASD because that's what they're comfortable with

If you want to treat your autism like just a difference we're not stopping you. If you want to treat everyone's autism like just a difference then we have problems

If a label doesn't help you that's fine. Don't speak on how helpful labels that never even applied to you are. If you think all autistics with higher support needs are incapable of knowing what's ableist so you have to talk over them you are wrong.

[myrthing]

This is the DUMBEST SHIT I have ever seen, so congratulations! You win a prize and the prize is apparently "myling unwisely picking fights".

AS A LEVEL 1 autistic person I say this unto you: Shut up. Sit down. Listen to higher support autistics. If you're so scared to be seen as disabled that you have to deny how autism is the direct cause of people's disability, there's always just the possibility of masking. I don't like saying that, because I think it's perfectly possible to both be autistic and to not be disabled in any way, but I despise these attempts from fellow low support autistic people to distance the disorder from those who are actually disabled. It stinks of ableism.

ASD isn't a mental illness. It is a developmental disorder. Feel free to explain how homosexuality being seen historically as a mental illness maps onto a developmental disorder that is frequently both intellectually and physically disabling.

Sometimes, there's actually a good reason to have a name for a group of symptoms! Such as the fact it makes it easier to get help.

[stal3bread]

I know that everyone stims, but I wanted to get a sample size from autistic people specifically. Also, I know there are non-vestibular stims involving other senses (such as hearing or sight) but I'm just talking about vestibular (movement) stims right now.