#level 1.5 autism

[aunt-kats-chats]

I'm so tired of the idea that autism isn't a disability. I'm aware that some people aren't too affected by their autism but I am disabled by mine. I've been in and out of different therapies since I was nine years old and that was even before I was diagnosed at age twelve. I have frequent meltdowns and shutdowns over the littlest of things and combined with my ADHD and GAD it's quite frankly a miracle I get anything done. I've been exhausted since school has ended since I have to prep for University and I keep having mini meltdowns over all the uncertainty ahead. I barely know how to keep the friends I still have and everyone I'm close with is going to different schools so I have no friends as a safety net come Fall Semester.

It's tiring being Autistic because everything is so much more difficult. I can barely write legibly unless I think about it and even making friends is a game I barely know how to play. Yet when i tell people that I'm autistic they are shocked as if it wasn't obvious by my difficulties with peers.

I just hope that University is better but fuck I don't even know anymore.

But to my main point. Autism is a disability. Deal with it

[nocherryblood]

Autism regression things I'm slowly noticing, that are terrifying me:

-Speech changes. Sometimes speaking takes more effort or my speech is slower. Moreso when I'm tired, but even when I was tired a few years ago I was a lot more okay to talk. When I speak it's like speaking through thick, heavy tar. I stutter or take ages to speak. It's like I can do it but it's so slow, dull and monotone that it's almost comical. But it frustrates me because I feel like I could speak normally if I tried and I think I can but it's so much effort that I don't want to anymore

I'm trying to learn British Sign Language or Makaton or Sign Supported English to help but no one around me knows it for it to be useful when I most need it, but even then I am not sure I have enough in me to think and remember and put all the effort into remembering the signs. I've thought about using AAC but I know most people will just tell me to talk verbally and that I don't need it. I feel like I'm trying to be "special". I feel awful. But I also can't help but imagine how much easier it may be for me not to have to speak when it bothers me so. I can tap a button, tap a few buttons, and what I need to say will be gotten across

-Mask/repression failing. I'm finding that I act a lot more noticeably "stereotypically" autistic (in quotes because there is no one 'autism' and stereotypes can be harmful, I know, please don't lecture me) whereas before I didn't really have too many troubles repressing myself and my instincts. For example, I am often reprimanded for being "babyish" and "silly"- for example, verbally stimming out loud at random all the time (e.g. little groans or grunts or mutters or hums- they come as easy and as often as breathing), not being able to control when I cry and whine because I am upset, whining and 'getting in a tizzy/tantrum' and getting "overreactively" upset when someone is not understanding me and getting frustrated so easily (sometimes because people don't always understand that sometimes I'm not complaining because I'm just annoyed, but because if they don't help I am going to have a meltdown), and as I have just mentioned, having more meltdowns or getting close to one despite never really ever having them before. I have been under a lot of stress lately, so I know that could factor into all of this, but it feels like I can no longer get a grip on myself and it feels like I am losing control of my own self. It's frightening and I know it's annoying to deal with for other people, and that stresses me out even more. How do I tell someone without them thinking I'm just being babyish or it's an excuse for me to be lazy and/or stupid? When they tell me I was doing so well and now I'm not? And I try to force myself to "stop being silly" and it works for all of about two seconds?

-Loss of previously concrete abilities. I am losing so much energy. Depression and mental health factors into this, I know, but it feels like I am getting dumber. I can't retain information the way I used to. I can't concentrate or focus like I used to. I can't enjoy even my own hobbies like I used to. I need more help and more prompting and more explanation than I ever have asked for or needed before. And "used to" refers to how I was only about 2-3 years ago

-Having more sensory issues and taking longer to understand/process instructions and ideas. It takes so long for things to fully "click" into my head now, if they even do at all. Or I interpret it completely wrong and people think I'm doing it intentionally. I forget things so, so often. I write things down to try to help... but the I forget what to write down or that I've even written anything down at all. Taking medicines on time is almost impossible too, even with reminders and timers

-Guilt/imposter syndrome. A lot of these things lead to guilt. Guilt that I'm taking away help and support from people with higher support needs, from people with real struggles, guilt that I'm "probably faking it" even though I cannot stop it even when I try and I cannot improve myself for very long before it goes back to being bad again or sometimes even worse, guilt that I'm just lazy or guilt that I'm "pretending to be worse". And because I feel guilt, and because I know others perceive me as faking it or "putting it on"/"making it worse than it seems to be" I feel terrified of trying to accommodate myself. It feels like some parts of my spectrum are worsening or crossing into higher support needs, even if it's not every day. Maybe it's one day or two days or three days or four days or maybe even five days that it crosses into a higher support need category. But because I can still do some things for myself, the rest is brushed off...

I need to keep reminding myself that though I may have it better than a lot of people, I'm still struggling. And I am allowed to ask for help, I want to believe. But being classed as "High Functioning" or "Level 1" is not helping in the slightest. Why can't they give you a classification based off of what parts of Autism exactly you need help and support with?

Is there anyone else that is going through this as well?

[cripplecharacters]

Writing Profoundly Intellectually Disabled Characters

[Plain Text: Writing Profoundly Intellectually Disabled Characters]

While there is a glaring lack of intellectually disabled characters - except maybe big, physically strong, white men who can’t “tell right from wrong” or have a personality - in all sorts of media, specifically profoundly intellectually disabled characters are next to non-existent, with the existing ones being used more often as plot devices rather than portrayed as human beings.

This does make a degree (and not more) of sense considering that 85% of ID people have it mild, 10% moderate, 3.5% severe and only 1.5% has profound ID, the larger group inevitably gets more representation (which doesn’t make it good, but it does exist). However, it hopefully doesn’t need explaining that minorities deserve to be represented too (...and represented well), so this is what this post will be about.

Please don’t treat this as your only source on writing a character like this (even though I’m willing to bet it’s the only one like this, at least on tumblr), do your research and always check other sources.

Also, for clarity: intellectual disability isn't an umberalla term for "mental/brain disability". It's a specific, singular diagnosis that used to be known as "mental [r slur]". It's not the same as brain damage, autism, dementia, dyslexia, and anything else that's not specifically "intellectual disability". It's something that you are either born with or acquire early in life.

How do I Include Them in the Story?

[Plain Text: How do I include them in the story?]

A profoundly ID person will spend the majority of their time either at home or in some sort of care facility since they will require 24/7 help. The easiest role to put them in is probably a family member of another character. I've mentioned on this blog before that the "ID characters always end up as the annoying younger sibling" thing is overdone, but none of these necessarily have to be true for this suggestion to work (especially not the "annoying" part).

A non-ID character could have an intellectually disabled older sibling, twin, cousin, uncle/aunt, the sibling of a grandparent, etc. Seriously - a severely disabled person can be an adult, or even an elder. Just not as a parent, since a profoundly disabled person can't consent (a lot of ID people very much can, but this is the one disability where your level of functioning is baked into the exact diagnosis - profound ID comes with the inability to consent/understand the consequences enough to consent).

"They're a family member" is basically the easiest "excuse" to include a profoundly intellectually disabled in a story (and, as a bonus, you don't have to figure out how the other character would react to meeting them for the first time, since they probably knew each other for a long time already).

If your story isn't about the profoundly disabled character and instead just features them as a character, it would be much easier to not make the other character their primary caregiver. It's simply a ton of work and the character wouldn't have time for fighting dragons and whatnot - it'd be easier to have the abled character spend time with the disabled character at home (or care facility; you can very much visit someone in one) hanging out rather than actually doing the caregiving part.

Outside of a home and a care facility, there are also day care programs that some people might attend. This is the rarest solution out of the three mainly because of financial reasons, but also these resources aren’t as common for people who can’t walk, learn self-care, etc. Going to one takes time (the profoundly disabled person isn’t gonna walk there by themselves) and probably requires a specialized van (that you can bring a wheelchair in, which is incredibly expensive). Most day care programs are focused on people who are moderately or severely ID at most. One made for profoundly ID people would require 1:1 aides, which generally means the programs are much smaller for logistical reasons, but also even more expensive. For most people, too expensive without funding. Basically, this is an option, but you have to consider your character’s financial situation and/or what kind of financial support do disabled people get where they live.

Another way is having the disabled character in some sort of high position - in real life there were quite a few cases of profoundly and severely intellectually disabled royalty. Depending on the place and time there might have been pressure to not let the public see them, but this wasn't always the case. The biggest example of the latter was probably Emperor An of Jin (the first Jin, Eastern one) who was, as his title suggests, crowned at some point. He didn’t actually rule (his uncle did) but yes, you can have a severely disabled person as the head of a monarchy, it’s not without precedent.

In fiction you can do whatever you want anyway when it comes to ableism, you can have it be there, or you can have it not be there - and if it does exist then there are still different kinds of ableism you can portray that aren't the "literally killing-the-disabled-baby/hiding-them-in-some-dungeon level of eugenics" kind. Maybe a rich family who cares about their image would actually be unable to shut up about their kid to show how "saint-like" they are for caring for the disabled - it is unfortunately realistic, and can be a potential way to have the character exist in public, not ignore ableism, and also not go the aforementioned literally-just-murder route that writers usually do to show an ableist family.

Characterization

[Plain Text: Characterization]

Warning; the bar here is somewhere in the Earth's inner core. If your character has a single characteristic beyond aggressive/loud/unmanageable*, they're automatically at the top of most complex fictional representation of severely/profoundly ID characters. Congrats.

* - Some people are those things but, unsurprisingly, they're other things too. A lot of profoundly ID people can actually be completely quiet - you notice people who are loud because they're loud.

As with literally every character, you need to figure out what they like and not like. This can be quite literally anything, but try to think of the basic stuff. Do they have something they really enjoy eating (and conversely - something they refuse to eat)? Do they have some sort of comfort toy or object they don't want anyone touching (and maybe showing them playing with it with a different character could be a way to show how much they trust them)? In more modern settings, do they have a favorite show they always bug everyone to put on? Are they really clingy or do they hate physical contact (again, maybe they only enjoy it from a specific character)?

Another characterization could be comfort objects. A lot of profoundly ID people are autistic (which I'll touch on later) and will have an object that they bring everywhere the same way that non-ID autistic people might. There's nothing really specific here, just another layer of "this character is a Person". Maybe they have a blanket they really enjoy chewing because the texture feels good or some sort of plushie they like to throw around because it makes a sound they find funny. Lots of options. Maybe they have a personal “tell” to let others know they want their comfort object brought to them.

Keep in mind, you have to show this all in non-verbal manner. A profoundly ID person is probably not using any sort of AAC device (the most robust one I remember seeing right now was a low-tech one with "yes" and "no", but there are probably ones who operate on a larger amount of singular words). This is basically another opportunity for characterization - what do they do when they're happy - laugh, flap their arms, make sounds? - and when they're upset - scream, hit themselves, make different sounds? Obviously, you'd have to take other disabilities into account (e.g. many profoundly ID people won't move much, some might not be able to make much audible sound, etc.) but almost anything helps.

This brings us to…

Communication

[Plain Text: Communication]

An important thing (concept?) I'll throw here is "total communication", which can mean different things in different contexts, but here I'll use it to mean "using everything you can to communicate with someone who cannot do so in a ‘traditional’ way".

Communication can be categorized as having two sides; expressive and receptive. For most intellectually disabled people in general, receptive skills tend to be significantly higher than expressive ones, though there are specific disorders where it’s reversed or equal. As mentioned before, most profoundly ID people won’t speak orally, won’t use sign language, and won’t use AAC (though out of all three, AAC is the most likely one). Some might say single words, but that’s about it. It’s not a “physically mute but can write perfectly grammatically correct sentences” situation, it’s more of a “[single noun]” one, if anything. Receptive skills however are pretty decent (in comparison) and they would probably understand their name, the name/title of their carer(s), names of things they see every day, events they have some frame of reference to (e.g. if they grew up Christian, they would probably know what Christmas is), etc. Your other characters could (and should) talk to them like they can understand, even if they don’t catch everything or even most of it. I say a lot of “probably” there, but the people who can’t do so usually have other comorbidities, which I’ll mention later.

To go back to expressive communication, eye pointing can be used to figure out what the character wants. A change in breathing can be used to tell that a character got stressed. Throwing an object can be used as a hint that the character wants to play. Maybe them reaching towards person A means they want to eat, but reaching towards person B means they want them to sing a song for them. Maybe them making a particular face means they just had a seizure and need to be comforted. Whatever their "tells" like this might be, other characters who know them would probably be able to tell more-or-less what's going on - you don't have to go really in-depth, especially if it's a minor character, but figuring out the ways your character communicates with others will make it feel more like a person and not a Disabled Lamp (“if you can replace a disabled character with a lamp or a sick dog, they’re not a character”).

If you read some of these and go "that's a thing that a child would do" then you're not necessarily wrong. A profoundly ID adult might enjoy activities that primarily kids partake in. This is, I can't stress this enough, not the same as "mentally being a child". Otherwise, a whole bunch of adults on this very website would be "mental middle schoolers" based on the shows that they watch - but they're obviously not. A profoundly ID adult doesn't have the "mind of a baby" if their favorite game is throwing a toy, they have the mind of a profoundly intellectually disabled adult. Sometimes people assume that since ID people aren't mentally [incorrect age], they always "act their [actual] age" and essentially end up downplaying how much some people's ID affects them, when the point is that no matter what you do, you are your age. An ID character who is 26 years, incontinent, constantly puts their hand in their mouth, can't speak, whatever, is mentally 26 years old the same way that they would be if they had a wife and a mortgage.

For the last thing from this section I'll circle back to the assumption that all severely/profoundly ID people are loud, aggressive, etc. - as I said, some of them are (just like abled people). The thing is, this is not always an unreasonable response to being unable to communicate with the people who are caring for you. If you had a pressure sore but couldn't explain it to anyone you'd be pissed off and screaming too. That's an extreme example, but still applies. If someone is severely stressed out (for an abled person, this might be inheriting a ton of debt, for a profoundly ID person it can be a change in daily routine), they can lash out. It's an unpleasant but very much human reaction to have, even if what's behind the ID person's behavior is significantly different from what an average abled person might consider "a good reason".

So I guess my advice is, try to show some empathy to the character, even if they genuinely are loud and/or aggressive. Intellectually disabled people - including the profoundly disabled ones - aren't some alien species that is just mean and hates their caregivers for no reason, some just can't process their feelings the way an abled person might because of their disability. That's not to say that caregivers aren't allowed to feel frustrated - because they are - but that very severely disabled people aren't purposefully evil. As mentioned in the earlier parts, all behavior has a cause, just like for literally everyone. So if the character is being "unmanageable": maybe they aren't some cursed burden, maybe they're just stressed out of their mind and now someone they don't know that well is trying to do *something* to them, which they can't figure out because of their disability affecting their receptive language skills.

Resources and What to Keep in Mind

[Plain Text: Resources and What to Keep in Mind]

Some resources you might read about ID can be potentially misleading. Even if you specifically look for causes of the profound severity of intellectual disability, you will get results for mild ID. That's mainly because people with mild ID make up >85% of intellectually disabled people and those with profound ID make like 1%, so they're a minority in a minority.

Basically:

Down syndrome is a very unlikely cause. It's always listed as the main genetic cause of ID, but that's only true for mild and moderate severities. If you choose any of the common causes of ID make sure it actually has the symptoms you're looking for.

Most profoundly ID people will have either severe brain damage early in life (and this can come with cerebral palsy), cephalic disorders (e.g. microcephaly), genetic conditions that you've never heard of (e.g. Pallister-Killian or Emanuel syndromes, 3p deletion), genetic conditions that you've never heard of for a very understandable reason (e.g. X-linked intellectual disability-limb spasticity-retinal dystrophy-arginine vasopressin deficiency… there are hundreds named in this way), or just have it without a known cause. The last one happens much more often than people tend to assume.

For a reason I'll probably discover at some point, most disorders and syndromes that come with ID are said to have "autistic-like features" rather than being "comorbid with autism". In practice, it's the same thing. Your character is probably autistic.

In the same way, a lot of practical resources will assume that ID = moderate ID (since most mildly affected need no or minimal support, and severely/profoundly disabled ones are a small minority) so pay attention if you're looking at the right things. If it's talking about having a job, travelling alone, etc., then you got clickbaited.

Another subsection here will be comorbidities because there are a lot of them. I’ll mention the biggest ones.

Brain damage is the most common one (except autism) and can vary a lot. There is barely anything I can say about this one, it’s an enormous spectrum that for some people causes disability and for others barely affects their symptoms. Cerebral palsy, especially quadriplegic, is seen a lot and might affect the character’s mobility a lot. Some people might be unable to breathe or swallow and need a breathing or feeding tube.

Deafness and blindness are comorbid with a surprising amount of causes of ID. The thing is, you could take advice for deaf/blind characters as-in for a character that has both (e.g.) glaucoma and mild ID and not change much, but this doesn’t really work for a character who’s profoundly disabled like this. The situation that can happen here is that it’s not actually known if the person is or isn’t deaf or blind because they can’t tell you. As mentioned earlier, some people will have absent receptive communication skills. How do you verify if they’re deaf or just not reactive to language? Some people won’t react to even extremely loud sounds, even if they can hear them perfectly well (besides, a lot of deaf people can still hear some). Same for verifying if they are blind - obviously, sometimes there’s something visual going on, but often there isn’t. Especially since the main causes of both blindness and deafness will be brain-based, not ear- or eye-based. Another character not being sure if the disabled character is blind or just very uninterested in visual stimuli is a possibility, especially with less advanced medicine.  This is also why you might see those weird statistics of "between 5-90% of people with [condition] are deaf" kind.

Mobility is almost always severely affected. Some are fully mobile, but that’s simply not common. The average person will be unable to walk independently. It’s not always a muscle or nerve problem (though it absolutely can be), it’s mostly an issue of coordination. Because of this (and understanding physical space), operating a wheelchair (...successfully) might be impossible. This doesn’t mean you should just drop your character in a hospital wheelchair for them to get wheeled around because they will probably need a wheelchair that will actually support them - a headrest, ability to tilt, a harness, all that. This could be done with a powerchair (they can have controls on the back for a second person to operate), a manual wheelchair, or an adaptive stroller.

Now for resources;

One good resource I can recommend is SBSK (which I shared before), to my knowledge this is the only place that interviews severely and profoundly ID people (+their families) and the interviewer is great at actually interacting with many of them. 

Most resources on the practical things only ever talk about caregivers (who are very important) but completely ignore the actual person being cared for which IMO kinda defeats the point.

Good luck writing!

mod Sasza

[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%).

[ichverdurstehier]

Is it possible for someone's autism levels to change due to trauma? Like could a 1.5 go to a 2.5 after being kidnapped and tortured? I'm writing a story

[henrysglock]

Omg how did you learn how to read so fast??? Do you have any tips because I am struggling to make a dent in my TBR list and my readings for class ToT

I’m sorry, Nonnie, but I’m not sure what advice I can give 😭 I’ve always been a fast reader—I think it’s the autism. The Eddie book took me about 8 hours, and I once read an entire Eragon novel in 3 school days. I was a really early reader, too. Even so, the Dustin novel is only 290 pages long. That’s only 1.5-ish pages per minute, and the reading level on it is not particularly high.

All I can say is: Find motivation in weird places, if you’re bored with a book. Get attached to a character you hate and see if you can make yourself understand them—yes, even that character. Find a theme you like in the early bits and follow it through the book. Make predictions based on early chapters and see if you end up being right. Things like this will propel you, and narrowing your focus will keep you from getting too overwhelmed right off the bat.

If it’s about finding motivation to pick up the book in the first place…all I can say is that you just gotta do it. Leave your phone or computer or whatever in another room, shut the door, and start reading. Set a goal number of chapters per night, and don’t try to force too much too fast. Panic and time-based anxiety are the reading killers. Once you get started, the rest should come at least semi-naturally when you pick out something you’re dedicated to. Starting is the hardest part!

[thedisablednaturalist]

Just being around my family stresses me out. Which in turn causes my pain levels to rise. Everyone is so nasty to each other. I can't ask for help without being ridiculed so I just have to fight through the pain to make my dinner. And then I have to flee to my room or risk being chastised for the unhealthiness of whatever I manage to make before falling over. I just needed to eat a safe food that was quick, filling, and didn't trigger my nausea. But because box mac and cheese will make me fat my mom has to tear me apart over it. Also I only ate 1.5 meals today because my mom gets mad when I'm in the kitchen.

And the bathrooms? My brother spends 20 minutes taking a sink bath every half hour in the bathroom across from my room, so I have to use my parents bathroom if I don't get to it in time. I try to pee quickly but I have to pee frequently due to fibromyalgia bladder. My mom yells at me for using "her" bathroom. "Go downstairs!" she yells. Why can't my able-bodied brother go downstairs to take his sink baths then?? why do I have to painfully crawl down the stairs every time I want to take a piss?? Also he does this in the middle of the night too which wakes me up. Don't get me started on him filling the toilet with shit and not flushing so the smell wafts into my room 🤢

Oh and god forbid I have to take my weekly shower. Then EVERYONE is mad at me for "hogging the bathroom". I only shower once or twice a week due to pain and both my brothers literally showering twice a day (thus no hot water, it's impossible to take a cold shower with fibro). I have to fight to get a timeslot. And then my mom makes fun of me for looking "unkempt".

But according to everyone IM the bully, IM overreacting. My mom "almost died to birth me" so her behavior gets excused. My one brother has severe autism/OCD and my parents dont do anything to help or manage it so his needs are always above mine since I'm able to "push past it" (re: forced). Fun fact the "witch doctor" my parents took my brother to cut off my brothers meds cold turkey this week so its all been 200x worse due to withdrawal (who the fuck cuts someone off of WELLBUTRIN AND ZOLOFT cold turkey????).

I keep telling myself its only a few more weeks but I still haven't heard back about my housing application being approved and I'm getting worried.

How am I supposed to live, let alone work, in this environment?

[sonnyinthesky]

Just read the DSM-5 section on autism and it's rather interesting. I'm certainly autistic thats for sure. But I also read the table that defines the support levels, and it's interesting because for the first section (social communication) i'm very clearly L1, however, in the second section (restricted and repetitive behaviours) I'm almost certainly L2 ? What does it mean if i'm smack bang between them 😭

I'm diagnosed as level one so thats most likely the correct label for me, its just curious how the support needs system expects a person to fit perfectly into each box, when in reality some people dont fit perfectly!

I'm a relatively independent person so i do agree with the level one diagnosis, its just a fun thing to know i guess. I suppose id say im level 1.5 /hj

[sophieinwonderland]

Even going by currently suggested DID statistics...

1% of the known worlds population is Autistic.

1.5% of the known worlds population has DID.

Autism is more rare than DID. People are aware autistic people exist and there's a good amount of them. I've met numerous other autistics irl multiple times (We are autistic too). So who's to say any one person hasn't met numerous DID systems.

Additionally DID is considered to be underdiagnosed and in many places in the world Autism is also underdiagnosed. In the USA, 1 in 36 children have autism. That is ~2.78% of people with that disorder. It would also reasonably follow that the amount of pwDID if it became as properly understood as autism is slowly starting to become and people have enough awareness to try and get assements and/or therapy/care/etc. for it- the numbers will start to go up as well.

Also you have to take into account the very nature of the disorder. DID is often incredibly covert- systems without the covertness might be diagnosed sooner than systems whoa re incredibly covert like us if they have no awareness of what DID is. We had to seek out someone to even consider us having it because we are covert- we had to self diagnosis first to then go and access care because we would have seemed fine otherwise because of amnesia for all the episodes and issues we do have. We had to learn of things and learn to write down issues/track them or we would fully forget. Learning about first plurality and eventually DID is what helped us manage to eventually begin the treatment we personally needed and wanted for what was bothering us.

Sources used for this...

Worldwide autism dx https://www.tpathways.org/faqs/how-many-people-have-autism/ Worldwide DID dx https://www.ncbi.nlm.nih.gov/books/NBK568768/#:~:text=Dissociative%20identity%20disorder%20(DID)%20is,injurious%20behavior%20and%20suicide%20attempts.

This is a great addition! The autism comparison really shows how common it actually is!

I do find it really strange how Autism has far more visibility than systemhood despite being less common, and yet fakeclaiming of ASD doesn't exist at nearly the same level as it does for DID and OSDD.

[disabledautisticgreen]

i don't know my support needs and it's hard to tell which of it is autism and which is from my other issues. i get scareed because i don't think i can live on my own without help. i don't think i can get a job but my family keeps pushing me to try. i tried to learn how to drive but it just doesn't click for me. the iadl stuff is all stuff i need help with. but a couple badls are issues for me too.

i don't remember who diagnosed me with autism so i don't know what level i am. i feel more autistic than my partner and he sometimes get upset when i do things that are more autistic than him. i don't know how to figure it out. everyone says i should be able to do this or that and when i say i need my hand held i get corrected and told i just need a little help and encouragement. but i know i'm not level 3. is level 1.5 a thing?

my aunt is trying to help me get on disability but i need to call doctors to do that and while i can it's really really hard because i don't understand what people are saying on the phone and i can't ask them to repeat themselves because i get stressed and just say "okay" because that's the only response my brain can give sometimes

i don't know how to end this. i know low support and level 1 can and do have issues. but i don't know if i fall under that. it doesn't feel like i do, i feel like i can't relate to my friends' issues and like i get judged for being different from them, i don't know if i'm faking or pretending having it worse off than them or if my mom medically neglecting me included the autism. i don't want to take from people worse off than me

i also am starting to wonder if i'm semi verbal because i've seen people say things that seemsimilar to how i experience stuff. feeling like jaw is clamped shut. wrong words coming out. stuttering and tripping over my words. i make grunts and growls when upset and it scares people. i think in concepts and it's hard to put words to the concepts. i forget words a lot and pause mid sentence. and talking is hard, not thoughtless. i can use text. but i have to sit for a long while to make words and have them make sense. sometimes i'm okay at words and sometimes i'm not. like right now

but i don't want to take words that don't belong to me or labels that don't apply. so i'm confused and i don't really know what to do or ask besides please help (advice?) and i know people here probably aren't professionals. but i don't know where to start. this has been making me really anxious all the time. thinking about it makes me want to cry if i think about it for too long. please let me know if i'm being hurtful by asking for help. do i just stop worrying about it ebcause i'm probably just low support level 1 with speech loss episodes?or is it fair to suspect that i'm not... i don't know. does low-mid support exist does level 1.5 or 1.7 autism exist??

[1am-rice]

Things I want to/make someone else do research on:

- SSRI’s as a temporary intervention tool

SSRI’s from my experience are often talked about as something that “initially worked really well” and then “caused more problems than they solved” after long-term use (2+ years). I would be interested to see a clinical trial across 3-5 years of patients receiving SSRI’s for 1 - 1.5 yrs vs patients who remain on SSRI’s for the duration (all groups would also be given free bi-weekly therapy). My hypothesis is that patients who had temporary intervention SSRI’s would see greater long term improvement.

- therapy alongside sex-ed in schools

This study would ideally go alongside vastly improved sex-ed, and would define “therapy” as the usage and teaching of mental health skills in classes holistically, with an on-site therapist for dedicated talk therapy also. This is easy to do really badly, but comes from my experience of tutoring English. Teaching students really basic CBT, DBT and general awareness skills has helped every student I have ever tutored. E.g. in Australian HSC English in the common module students look at human experiences alongside anomalies, inconsistencies and paradoxes, giving students tools such as the wheel of emotions, and the occasional therapy technique to apply to build psychological understanding of characters helps the student in English coursework, and I have often seen the student’s mental health improve simultaneously. Additionally I believe that a baseline understanding of tools that can be used in any interpersonal situation can be very helpful even if the student themselves has no issues in interpersonal relationships, as it allows insight and careful handling. Theoretically this would see students coming out of school with better self-knowledge and coping tools.

- workplace accommodations for high-masking/low level autism

I would like more research to be done in tangible workplace support for “low level” autism. “Low level” individuals are often (if not always) not provided monetary or social support tools - and do not qualify for them. But these individuals (myself included) do need support. I believe further research and records of autistic people in the workplace - given the opportunity to ask for support and that support be given - would allow for genuinely effective and reasonable accommodations to be discovered and/or improved for “low level” ASD individuals to function. This comes from my struggle to find work while attending university- with employers being quite hostile to questions and irregular scheduling requirements. I’m sure those aren’t the only areas that could do with more examination.

[aunt-kats-chats]

Question for other autistics. How soon is too soon to tell a possible friend that I'm autistic?

[clownrecess]

Hey! I had a question about the autism levelling system. If a person is deemed to be level 2 with the first diagnostic criteria (social deficits) but level 1 with the second (sensory/routine/etc.), would they be deemed 1.5 or do they round it to either 1 or 2? And if so, how do they decide which number? Sorry if this doesn’t make sense, brain fog at the moment

I'm actually really not sure. I guess it would be based on which level the person has more traits similar to? If anybody knows please comment it.

[ojiro-s-hellish-site]

You think of kid that said

'DSM-5 got rid of distinction between aspergers, autism, rett’s, child disintegration disorder, etc. and collapsed it all into autism spectrum disorder, and added levels to denote amount of support needed. level 1 is need support, level 2 is need substantial support,level 3 is need very substantial support. so it is a diagnostic tool that some autistics find helpful. so technically you can’t be explicitly diagnosed with decimal 1.5 2.5, but sometimes clinicians will say “level 2 in restricted repetitive behaviors, level 3 in social language communication.” levels (and honestly overall support needs labels) denote overall, typical functioning. common misconception is “well on good days i’m level 1 but on bad days i’m level 2 or even 3” but that is misunderstanding of levels. yes have bad days yes needs fluctuate, but levels is used to talk about overall typical day, used as summary. you can be level 1 when child but grow up to adult and become level 2 over time, but diagnostically you don’t fluctuate between levels per day.'?

No but I appreciate the information!

[lostcitysystem]

None of the autism levels fit us? Like we weren’t given one during diagnosis and as we’re looking at them now the closest to us is Level 2 but the other levels have parts that we strongly relate to. Also kind of disagree with it a bit being called ‘mild’ to ‘severe’ autism but yk.

With Level 2 it seems like we relate to everything but we have good language use and understanding and we can function relatively well under certain circumstances so more like Level 1. On the other hand we have frequent shut downs and can’t move on from activities that we haven’t timed to end. We stim all the time and have never been able to make friends properly or engage in communication effectively despite our language use. We also can’t cook on our own and can’t do much to look after ourselves day to day. We’re like both a 1.5 and a 2.5 on the scale.

Anyone know if this level system has more defined parameters or if it’s even used that much? Also does anyone know based on my descriptions what level I’d be?

[atlantahyper]

Portable Hyperbaric Chamber: A Complete Guide

HBOT is that treatment method in which the effect of oxygen healing is enhanced as well as achieved. HBOT was initially and traditionally available only within specialized medical hospitals. However, with the arrival of portable hyperbaric chambers, it's now accessible and available to everybody. These portable units are compact, comfortable, and super easy to handle. This blog covers everything that you want to know about portable hyperbaric chambers, their benefits, applications, and considerations.

What are Portable Hyperbaric Chambers?

A portable hyperbaric chamber is a medical-grade tool used to provide hyperbaric oxygen therapy in a nonclinical environment. Unlike conventional hyperbaric chambers, these are typically light in weight, flexible, and more economical. Such chambers are also constructed of heavy materials such as reinforced fabric, together with airtight zippers for pressure control.

The user enters the chamber during a session and breathes in oxygen-rich air at a pressure higher than the atmospheric pressure. This increases oxygen levels in the blood, promoting faster healing and improved cellular function.

Advantages of a Portable Hyperbaric Chamber

Portable hyperbaric chambers offer numerous benefits, making them an attractive option for individuals seeking the advantages of HBOT without visiting a medical facility:

Healing and Recovery

Increased oxygen delivery accelerates the healing processes of wounds and injuries and, consequently, any post-surgery recovery through the promotion of cell reproduction.

Enhancing Athletic Performance Recovery:

Athletes apply HBOT techniques to reduce exhaustion, increase vitality, and aid in faster rehabilitation from injuries.

Aiding Long-term Conditions

Long-term chronic conditions such as Fibromyalgia Chronic Fatigue, and Migraine can be healed by increasing their oxygen levels alongside the reduction in inflammation.

Venice

Portable chambers give patients the luxury of carrying out treatment sessions in their comfortable homes, hence saving time and offering flexibility.

Cost-Effective

The cost of buying a portable chamber is relatively higher, but the difference in terms of expenses comes at a much lower cost than a series of clinical visits within a short period.

Non-Invasive Treatment

HBOT is non-invasive with minimal side effects, hence suitable for nearly everybody

Portable hyperbaric chambers are applied for multiple uses in health, wellness, and sports:

Wound Healing

These portable hyperbaric chambers heal chronic wounds, diabetic ulcers, and radiation injuries by ensuring adequate oxygenation to tissues.

Neurological Conditions

Scientific studies prove efficacy in conditions like traumatic brain injury, stroke, and autism spectrum disorders.

Anti-Aging and Skin Rejuvenation

High oxygenation leads to elastic skin, wrinkles removal, and a complete rejuvenation of the body.

Immune System Strength

HBOT has the strength to boost immunity due to lessened inflammation and increased cellular repair.

Altitude Sickness

Portable hyperbaric chambers help reduce altitude sickness by enriching oxygen levels.

How Does a Portable Hyperbaric Chamber Work?

A portable hyperbaric chamber operates through controlled high atmospheric pressure greater than normal conditions. Here's a step-by-step account of how it works:

Setup: It is pumped up by an air compressor with oxygen concentrators or cylinders attached to it.

Pressurization: The pressure inside is elevated to the prescribed level (which is typically in the range of 1.3 to 1.5 ATA) once the user has sealed the chamber.

Oxygen delivery: Oxygen-enriched air is breathed through, and its dissolved components penetrate the bloodstream for better tissue oxygenation.

Duration of a Session: A typical session usually takes 60-90 minutes. Duration depends on an individual's requirements as well as the medical condition being treated.

Depressurization: After the session, the chamber is slowly depressurized to normal atmospheric levels before the user exits.

Considerations for Selecting a Portable Hyperbaric Chamber

Choosing the right portable hyperbaric chamber requires considering several factors to ensure safety, effectiveness, and suitability:

Pressure Range: Choose a chamber with a pressure range appropriate for your therapy needs.

Size and Portability: Ensure the chamber's dimensions accommodate the intended user and that it is easy to transport and store.

Material Quality: Opt for chambers made of durable, medical-grade materials with reliable seals and zippers.

Certification: Look for products approved by regulatory bodies to guarantee safety and quality.

Ease of Use: User-friendly designs with clear instructions and automated features enhance the overall experience.

Maintenance and Support: Check for warranty, maintenance requirements, and customer support services offered by the manufacturer.

Safety Considerations: While portable hyperbaric chambers are relatively safe, it is important to follow proper usage guidelines and consult a healthcare professional before starting therapy:

Medical Supervision: Consult a qualified professional, especially if you have pre-existing conditions or are pregnant.

Avoid Overuse: Follow recommended session durations and frequencies to avoid potential side effects.

Proper Ventilation: Place the chamber in a well-ventilated area and avoid using flammable materials nearby.

Regular Maintenance: Keep the chamber clean and inspect it regularly for signs of wear and tear.

Portable Hyperbaric Chambers of the Future

As technology advances, so does the functionality and usability of portable hyperbaric chambers. Smart monitoring systems, a more compact design, and integration into health apps with real-time data will be some of the expected developments. HBOT's popularity will only keep increasing, and so will these portable hyperbaric chambers as people include them in their home health and wellness programs.

Conclusion

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