as severe autistic, severe mentally ill, severely physically disabled and chronically ill person can confidently say dont find online spaces safe. i dont find online disabillity spaces so welcoming as be potray are, cus disabled or not, neurotypical or not, discrimination and these hierarchies exist EVERYWHERE. dont find social media so welcoming.
but some online spaces especially genuinely most utterly disgusting horrible echo chambers pure hatred and misinformation central could ever find. one major online space, or social media regard this is what tiktok is. tiktok has done and continue do awful awful nasty damage reality many disabillities, how serious and significant are and what they actually are or arent in first place.
but what motivate me make this post today apart from deep long term hurt and disgust have towards reality these online spaces and how people behave within them is what been happening tiktok recently.
this person who have many/multiple conditions include ME (myalgic encephalomyelitis) who if remember right have been mostly bedbound for months months months now have made video trying explain and showcase reality got with unable do any form labour, work, due have these conditions and explain how unrealistic their needs be accomodate in any job be possible therefore trying achieve disabillity benefit.
and way everyone have receive this persons attempt at share and educate their life been beyond disgusting. from invalidation, laughing, mocking, fake claiming, to continuous death threats and dozens hatred filled uneducated videos and responses. this including people who claim of have some condition this person have but saying "i have this and this and i work" "i have this and that but i dont let my illness stop me" "i am more than my conditions so are you."
im sick and tired these false narratives. it is so prevelant in more mild severity disabillity spaces push out this mindset of pushing thru conditions have, pushing thru symptoms. pushing ideal that just because YOU are able why isnt the other person able just as you. can we all stop be horribly insensitive and ignorant? wether mild disabillity or severe disabillity, you are hurting yourself and others by pushing the support for these attitudes.
and am not talk about more mild disabillity folk who due financial, environment or otherwise factor are legitemately forced be push thru symptoms or push work in inaccessible way, that is not point so please no derail.
point be is we should not encourage these ideals. and point be we should absolutely not use ones personal circumstances which are either by choice or not, onto others, especially if said person more severe disabled.
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went to reptile expo!!!! met someone there while look at spiky rollers (& got 4 new ones!!! one of them is also nice visual stim because is really really really bright orange and that color really happy-making, and another has button that really quiet and super buttery smooth to press, not grind against sides like other button-having spiky rollers, and plastic feel nice and soft texture, think is different kind of plastic from other ones. AND ONE OF THEM HAVE WRIST STRAP!!! so can bring it places and use it not hide it away in pocket where forget about it), and did not mask so much of talking problems. let self do more stutter & pause and "bad" grammar instead of try to be Perfect At Talking (which always fail at anyway). and conversation went really really well!! she was super nice :3 think in part because of not mask talk problems, she could tell had more cognitive difficulty than others (including own family......) assume. felt nice to not be scared of say wrong/"weird" thing or be obviously confused, felt nice not have to be perfect at conversation and not get scolded or scoffed at for it. was nice to be talk to in simpler slower words and not have to spend forever try to understand big fast word (and get out own good words at same time)
I think that it's natural for a parent to not really listen to their child when they're first starting to speak. After all, it's mostly gibberish and hard to follow. The child is most likely just making noises, so simple "oh, wow, uh huh, and then?" Suffices.
However I don't think my parents ever got out of that listening phase when I got older. My interests are very limited and everytime I speak It's just that same passive nod with no follow up.
The undiagnosed msn autistic experience of being given something and expected to know how it works on your own completely (I can only assume) based on your age.
Anyway I spent 15 minutes watching videos on how to use an inhaler and then found visual steps to save onto my phone for whenever I need to use it. Apparently because I'm idk 17 I'm supposed to know how to use an inhaler??
Even though I have somewhere between moderate to high support needs autism, I hate the idea of science āfinding a cureā before thereās been even a genuine attempt at radically changing society into something thatās not actively hurting us.
Because why should I be expected to go through something so potentially personality and life altering, so as to not be a burden to other people? Why is the onus on me and others like me to change for society rather than have society change for us? Why can non autistic people never put in even a fraction of the effort many of us do, just to feel safe and avoid their ire?
This is a genuine political point for me. I donāt think the act of searching for a cure for autism is morally neutral in a world running on capitalism and eugenics.
It has little to do with our well being, it is solely because we are seen as being less worthy of life on a fundamental level, and being punished for suffering from ableism in every aspect of our lives.
If it was for our sake, discussions about what it even means to cure autism and whether or not it will actually be beneficial for us would be at the forefront. There would be extensive talking about the sheer diversity in autistic presentations, and whether or not curing social disability is even possible after birth.
Iām not saying that wanting a cure is bad by any means, I often wish myself that I could have been born without this.
But I just cannot stress enough that the scientific endeavour itself cannot be separated from the discrimination we face. Until we tear down the system that intentionally suffocates us, this matter will remain rooted in violence.
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Itās not like I know of any other way to exist, or at least not from personal experience.
My point of view is just that: mine and mine alone. It has strong points and flaws just like anyone elseās, and in that sense I donāt feel all that different from other people.
I donāt hate my autism.
But I also donāt particularly love it.
I cannot explain why though, just like I cannot explain why I didnāt say something a certain way.
I donāt know how explain why I did something a certain way or not, nor why I didnāt understand what you told me even after the third time. I couldnāt tell you why I heard one thing when you clearly said something else entirely.
I couldnāt tell you why I cannot tie my shoelaces, or why I donāt just do things spontaneously, or why I donāt just stop myself from eloping and getting lost, or why I donāt just stop hurting myself when stressed.
Itās not difficult to walk, or eat, or speak, or read, nor to understand and comprehend.
Of course, everyone struggles with it. You just have to do it until it works.
Thatās why I needed to try harder. Because why would I not do things if it wasnāt due to a lack of willpower?
I became obsessed with language and rhetoric from an early age. I understood the importance of language, as both a tool and an art form. In my mind, if I could just learn to master it, people would finally understand what I was saying.
It only made it worse. People saw natural talent where there was only years of effort, and no small amount of trial and error.
Not only did I not learn how to properly advocate for myself⦠my work only served to further confuse the people who I needed to understand me the most.
Even now, no matter how many words I use, I still cannot describe the heart of the matter in any clear detail. Only vague concepts with little substance, even in this very text.
I list my struggles, but itās not specific enough. I try to elaborate, but Iām trying to describe something I donāt actually understand.
Because that too is a part of the disability, to not understand your own feelings and needs, and thus being unable to adequately ask for help.
It doesnāt matter then, that you canāt live alone without the risk of actual death. That you canāt eat whatever is available even if the alternative is starving.
It doesnāt matter that you canāt leave the house without someone to guide you, or that you require guardians to advocate for you in your stead for all legal matters.
Even any strengths you maybe have might not help you.
I might have learned to write after decades of practicing, but I still struggle with reading comprehension. It was noted as my main weakness during my evaluation, and itās something I consistently have to fight with, whether I read for fun or legal reasons.
I could not finish education, and the decision that I would never have a job was made for me before I ever knew what Iād been born with.
When asked about my future, I feel the need to specify that Iām involuntarily childfree, because the choice was never mine to make in the first place, regardless of whatever hypothetical outcome.
If not for my guardians helping to manage many aspects of my life for me, I would not be alive today. No amount of consequences helps me āovercomeā my difficulties, and in fact only makes things worse.
Why donāt I just do the things that would make my life easier?
Itās a good question. And itās certainly logical, as it would greatly increase my quality of life. Practically every aspect of my life could be made easier if I just did what everyone is expected to do.
⦠So why donāt I? Or rather, why canāt I?
Why canāt I seem to learn or get better from my experiences? Why canāt I ever seem to get used to the things that bother me? Why canāt I be normal?
Iāve asked myself that many question many times, but Iāve also wondered other things.
Things such as: why wonāt people accept me as I am? Why do they treat me differently from how theyād treat others? Why do even other people with this same diagnosis claim that people like me give them a bad reputation?
I donāt hate my autism, nor do I love it. Tearing down capitalism will remove some problems, while far more of them are completely unrelated to whichever economic system we live under.
A classless, moneyless and stateless society would ensure I wouldnāt have to worry about affording food for example, while simultaneously it wouldnāt cure my eating disorder.
And I think ultimately thatās the heart or it all. Autism make me ill suited for many aspects of basic living, and thatās not even getting into the troubles from multiple chronic illnesses, all of which seem to often be comorbid.
But Iām also just kind of okay with that. Because life by its very nature cannot be absolutely perfect without some level of adversity.
Maybe itās simply not the metric we should be using to determine whether or not we deserve life and care.
I donāt love my autism⦠but I also donāt hate it.
Itās the only way Iāve ever known how to be, and itās the only way Iāll continue to be for as long as I live.
I donāt think I have to love my circumstances in order to find life worthwhile regardless.
Suffering is a poor indicator for whatever value there is to living. There is so much artificial, manmade suffering that the discussion feels almost like a distraction from the issues that make caregiving such a demanding role to be in.
Until radical change is done, I donāt see the point in morally justifying or condemning my own existence.
Let me instead just be what being me entails, including my joy and my hardships. Everything that makes me flawed, and hypocritical, and annoying, and a burden.
The parts of me that people love even when theyāre difficult to see, or difficult to find altogether.
Someone who loves people but hide from them simultaneously. Someone who canāt do what most can for their friends, but can go above and beyond in other areas in ways that most people canāt.
A person whoās just one of many who have walked the earth in the past, and many who will in the future.
Unremarkable in the grander scale, and thus in that essence not so different from other people after all.
I really hate that a main talking point for autistic acceptance is āautistic people can do everything normal people can do!ā Some of us canāt. Some of us really canāt. A group of people shouldnāt be supported because they can preform ability, they should be supported because they are people. This applies to any disability.
Support Needed and Received Across Self-Identified OVERALL Support Need Levels in Autistic Adults
This post is comparing data from my survey on autism and support needs, which is still accepting responses from autistic individuals of all ages:
This is a survey to understand gaps in the type and amount of support that people with autism need versus what they receive. This survey is
Of 133 respondents, 98 are adults age 19 or older; of these, 34 (35%) have overall low (LSN) or low-moderate (LMSN) support needs; 36 (37%) have overall medium/moderate (MSN) support needs; and 28 (29%) have overall moderate-high (MHSN) or high (HSN) support needs.
This post is best read as a companion to my summary of autism-specific support need levels. Most notably, individuals reporting that their overall support needs are MSN or HSN consistently report needing help with fewer tasks and needing less frequent help than individuals who say that their autism-specific support needs are MSN or HSN. Likewise, those with overall MSN or HSN report receiving help with fewer tasks and receiving less frequent help than individuals who say that their autism-specific support needs are MSN or HSN. This includes less use of assistive or adaptive technology and less support from caregivers, professional support staff, or service animals. Finally, those with overall MSN or HSN were less likely to suffer serious consequences from not having help compared to individuals who say that their autism-specific support needs are MSN or HSN. This implies that individuals might have stricter cutoffs in mind for what makes autism MSN or HSN compared to their mental cutoffs for other disabilities.
Conversely, identifying as MSN or HSN overall was related to reporting a higher number of co-occurring mental health and physical health comorbidities (although a relatively lower number of neurodevelopmental comorbidities compared to those with HSN autism). Eating disorders were the only specific mental health disorder that predicted HSN overall but not HSN autism. Physical health was an even stronger predictor, with many comorbidities (e.g., neurological disorder or injury, gastrointestinal disorder or injury) emerging as much higher in those with HSN overall compared to all other groups.
(Under a read more due to length)
Support Needed
Types of Support
There was a clear gradient such that in almost all cases, increasing support needs indicated an increased need for support with any given task.
Across 13 unique tasks for food and drinks, the percentage of adult LSN respondents that needed or would strongly benefit from support ranged from 0% (help cleaning up) to 67% (meal planning), with an average of 28% (SD: 19%). MSN ranged from 0% (eating or drinking) to 83% (shopping), with an average of 37% (SD: 25%). HSN ranged from 18% (eating or drinking) to 89% (shopping and meal planning), with an average of 57% (SD: 19%). Additionally, 21% of LSN, 36% of MSN, and 57% of HSN needed help with every step of getting and preparing food, and 9% of LSN, 11% of MSN, and 46% of HSN needed help with every step of getting and preparing drinks.
Across 12 unique tasks for grooming and hygiene, the percentage of adult LSN respondents that needed or would strongly benefit from support ranged from 0% (washing hands and using the restroom) to 29% (cutting hair), with an average of 11% (SD: 11%). MSN ranged from 0% (using the restroom) to 61% (cutting hair), with an average of 22% (SD: 17%). HSN ranged from 32% (washing hands) to 71% (knowing what clothing to wear for the weather), with an average of 54% (SD: 14%).
Across 19 unique tasks for health and safety, the percentage of adult LSN respondents that needed or would strongly benefit from support ranged from 0% (using a medical device) to 74% (managing doctors), with an average of 31% (SD: 21%). MSN ranged from 3% (using a medical device) to 89% (managing doctors), with an average of 45% (SD: 25%). HSN ranged from 21% (not misusing drugs or alcohol) to 100% (scheduling appointments), with an average of 70% (SD: 20%).
Across 13 unique tasks for managing a home, the percentage of adult LSN respondents that needed or would strongly benefit from support ranged from 29% (dusting) to 65% (home repairs), with an average of 47% (SD: 10%). MSN ranged from 47% (putting away clutter and avoiding hoarding) to 83% (planning what to clean when), with an average of 63% (SD: 9%). HSN ranged from 39% (avoiding hoarding) to 100% (home repairs), with an average of 80% (SD: 15%).
Across 13 unique tasks for being in the community, the percentage of adult LSN respondents that needed or would strongly benefit from support ranged from 0% (not eloping) to 68% (managing unexpected situations), with an average of 24% (SD: 18%). MSN ranged from 19% (not eloping) to 75% (managing unexpected situations), with an average of 42% (SD: 19%). HSN ranged from 50% (accessing a rideshare and not eloping) to 89% (managing unexpected situations), with an average of 70% (SD: 12%).
Across 10 unique tasks for managing finances, the percentage of adult LSN respondents that needed or would strongly benefit from support ranged from 18% (understanding money) to 59% (paying taxes), with an average of 44% (SD: 12%). MSN ranged from 39% (understanding money) to 83% (getting or managing government benefits), with an average of 59% (SD: 13%). HSN ranged from 64% (not spending too much) to 96% (getting or managing government benefits and paying taxes), with an average of 83% (SD: 12%). Additionally, 53% of LSN, 50% of MSN, and 71% of HSN needed to be given money or things they can't afford.
Across 15 unique tasks for socializing, the percentage of adult LSN respondents that needed or would strongly benefit from support ranged from 12% (having a healthy marriage and raising children) to 74% (setting boundaries and saying no), with an average of 41% (SD: 19%). MSN ranged from 20% (having a health marriage) to 89% (setting boundaries and saying no), with an average of 57% (SD: 21%). HSN ranged from 7% (raising children) to 100% (setting boundaries or saying no), with an average of 72% (SD: 27%).
Across all domains, reminders would be strongly beneficial for 32-50% of LSN adult respondents; 37-78% of MSN; and 37-89% of HSN.
Across all domains, prompts would be strongly beneficial for 21-35% of LSN adult respondents; 23-64% of MSN; and 48-82% of HSN.
Across all domains, no support was needed for 0-29% of LSN adult respondents; 0-6% of MSN; and 0-4% of HSN.
Frequency
For food and drinks, the percent of adult respondents that needed or would strongly benefit from support daily or more was 30% of LSN, 67% of MSN, and 86% of HSN. The percent that needed support once a week or less was 36% of LSN, 6% of MSN, and 4% of HSN.
For hygiene and grooming, the percent of adult respondents that needed or would strongly benefit from support daily or more was 18% of LSN, 33% of MSN, and 86% of HSN. The percent that needed support once a week or less was 50% of LSN, 19% of MSN, and 4% of HSN.
For health and safety, the percent of adult respondents that needed or would strongly benefit from support daily or more was 15% of LSN, 44% of MSN, and 86% of HSN. The percent that needed support once a week or less was 56% of LSN, 44% of MSN, and 7% of HSN.
For managing a home, the percent of adult respondents that needed or would strongly benefit from support daily or more was 33% of LSN, 47% of MSN, and 80% of HSN. The percent that needed support once a week or less was 40% of LSN, 6% of MSN, and 0% of HSN.
For being in the community, the percent of adult respondents that needed or would strongly benefit from support daily or more was 3% of LSN, 28% of MSN, and 52% of HSN. The percent that needed support once a week or less was 55% of LSN, 22% of MSN, and 4% of HSN.
For managing finances, the percent of adult respondents that needed or would strongly benefit from support daily or more was 6% of LSN, 14% of MSN, and 52% of HSN. The percent that needed support once a week or less was 71% of LSN, 43% of MSN, and 22% of HSN.
For socializing, the percent of adult respondents that needed or would strongly benefit from support daily or more was 9% of LSN, 32% of MSN, and 60% of HSN. The percent that needed support once a week or less was 53% of LSN, 26% of MSN, and 12% of HSN.
Across domains, LSN were most likely to need help once a week or less (39%) or never (13%). MSN were most likely to need help daily or more (37%) or multiple times a week (26%). HSN usually needed help once a day (24%) or multiple times a day (48%).
Support Received
Types of Support
There was a clear gradient such that in almost all cases, increasing support needs indicated increased reception of support for any given task.
Across 13 unique tasks for food and drinks, the percentage of adult LSN respondents that received support ranged from 0% (understanding how to stay hydrated and not overeating or binge eating) to 40% (shopping), with an average of 13% (SD: 13%). MSN ranged from 0% (understanding how to stay hydrated and eating or drinking) to 67% (shopping), with an average of 19% (SD: 20%). HSN ranged from 7% (not overeating or binging and help eating or drinking) to 82% (shopping), with an average of 39% (SD: 20%). Additionally, 15% of LSN, 25% of MSN, and 50% of HSN received help with every step of getting and preparing food, and 6% of LSN, 6% of MSN, and 25% of HSN received help with every step of getting and preparing drinks.
Across 12 unique tasks for grooming and hygiene, the percentage of adult LSN respondents that received support ranged from 0% (most tasks) to 24% (knowing what clothing is socially appropriate to wear), with an average of 4% (SD: 8%). MSN ranged from 0% (washing hands, using the bathroom, changing into clean clothing, and wearing deodorant) to 31% (cutting hair), with an average of 8% (SD: 10%). HSN ranged from 11% (washing hands) to 54% (knowing what clothing to wear for the weather), with an average of 30% (SD: 15%).
Across 19 unique tasks for health and safety, the percentage of adult LSN respondents that received support ranged from 0% (exercising enough, not getting hurt exercising, not hurting themselves stimming, not hurting themselves sensory seeking, and using a medical device) to 30% (managing doctors and responding to emergencies), with an average of 10% (SD: 10%). MSN ranged from 0% (not getting hurt sensory seeking and using a medical device) to 53% (managing doctors), with an average of 19% (SD: 17%). HSN ranged from 14% (not misusing drugs or alcohol and not getting hurt exercising) to 82% (scheduling appointments), with an average of 43% (SD: 20%).
Across 13 unique tasks for managing a home, the percentage of adult LSN respondents that received support ranged from 3% (avoiding hoarding) to 35% (home repairs), with an average of 21% (SD: 8%). MSN ranged from 12% (avoiding hoarding) to 59% (throwing away or taking out trash), with an average of 43% (SD: 14%). HSN ranged from 18% (avoiding hoarding) to 79% (vacuuming and doing dishes), with an average of 59% (SD: 17%).
Across 13 unique tasks for being in the community, the percentage of adult LSN respondents that received support ranged from 0% (not eloping) to 32% (managing unexpected situations), with an average of 11% (SD: 10%). MSN ranged from 6% (not eloping and avoiding rude, socially inappropriate, threatening, or violent behaviors) to 53% (driving), with an average of 22% (SD: 15%). HSN ranged from 29% (accessing a rideshare) to 64% (driving), with an average of 48% (SD: 11%).
Across 10 unique tasks for managing finances, the percentage of adult LSN respondents that received support ranged from 6% (not spending too much) to 32% (paying taxes), with an average of 16% (SD: 8%). MSN ranged from 11% (not impulsively spending money) to 47% (paying bills), with an average of 27% (SD: 11%). HSN ranged from 32% (not spending too much) to 75% (banking and paying taxes), with an average of 54% (SD: 17%). Additionally, 15% of LSN, 17% of MSN, and 43% of HSN were given money or things they can't afford.
Across 15 unique tasks for socializing, the percentage of adult LSN respondents that received support ranged from 0% (dating) to 41% (setting boundaries and saying no), with an average of 12% (SD: 11%). MSN ranged from 3% (having a healthy marriage and raising children) to 34% (recognizing when someone is abusive or exploitive), with an average of 17% (SD: 10%). HSN ranged from 0% (raising children) to 59% (recognizing when someone is abusive or exploitive), with an average of 30% (SD: 18%).
Across all domains, reminders were received by 12-27% of LSN adult respondents; 24-44% of MSN; and 11-71% of HSN.
Across all domains, prompts were received by 0-15% of LSN adult respondents; 6-32% of MSN; and 19-46% of HSN.
Across all domains, no support was received by 24-56% of LSN adult respondents; 3-33% of MSN; and 4-26% of HSN.
Frequency
For food and drinks, the percent of adult respondents that received support daily or more was 12% of LSN, 29% of MSN, and 64% of HSN. The percent that received support once a week or less was 58% of LSN, 37% of MSN, and 11% of HSN.
For hygiene and grooming, the percent of adult respondents that received support daily or more was 0% of LSN, 14% of MSN, and 29% of HSN. The percent that received support once a week or less was 93% of LSN, 53% of MSN, and 46% of HSN.
For health and safety, the percent of adult respondents that received support daily or more was 6% of LSN, 17% of MSN, and 43% of HSN. The percent that received support once a week or less was 26% of LSN, 43% of MSN, and 32% of HSN.
For managing a home, the percent of adult respondents that received support daily or more was 9% of LSN, 25% of MSN, and 39% of HSN. The percent that received support once a week or less was 65% of LSN, 33% of MSN, and 25% of HSN.
For being in the community, the percent of adult respondents that received support daily or more was 3% of LSN, 11% of MSN, and 22% of HSN. The percent that received support once a week or less was 62% of LSN, 43% of MSN, and 26% of HSN.
For managing finances, the percent of adult respondents that received support daily or more was 3% of LSN, 9% of MSN, and 31% of HSN. The percent that received support once a week or less was 79% of LSN, 51% of MSN, and 38% of HSN.
For socializing, the percent of adult respondents that received support daily or more was 3% of LSN, 9% of MSN, and 19% of HSN. The percent that received support once a week or less was 76% of LSN, 47% of MSN, and 46% of HSN.
Across domains, LSN were most likely to receive help less than once a week (21%) or never (36%). The largest portion of MSN received help multiple times a week (22%), weekly (11%), or less than once a week (17%). HSN usually received help multiple times a day (20%), daily (16%), or multiple times a week (16%).
Supporters
Across all domains, LSN respondents were unlikely to get support from an occupational therapist (0%), a service animal (0.5%), neighbors, teachers, or other community members (2%), a dietician or nutritionist (3%), a peer support program (3%), professional support staff (3%), a roommate (5%), a social skills group (6%), a mental health therapist (8%), friends (12%), a partner (21%), or parents or other caregivers (36%). 37% (18-56% in specific domains) got help from no one.
Across all domains, MSN respondents were unlikely to get support from a service animal (0.5%), neighbors, teachers, or other community members (2%), a dietician or nutritionist (3%), a roommate (4%), an occupational therapist (5%), a peer support program (6%), a social skills group (9%), professional support staff (12%), a mental health therapist (12%), friends (15%), or a partner (28%). Help was common from parents or other caregivers (53%). 16% (6-28% in specific domains) got help from no one.
Across all domains, HSN respondents were unlikely to get support from a roommate (2%), a peer support program (4%), a dietician or nutritionist (7%), a mental health therapist (7%), a social skills group (7%), an occupational therapist (8%), neighbors, teachers, or other community members (8%), a service animal (11%), professional support staff (25%), friends (19%), or a partner (20%). Help was common from parents or other caregivers (71%). 9% (4-22% in specific domains) got help from no one.
What Else Helps
Across domains, 27-32% were helped by apps on the phone, tablet, or computer. LSN were the least likely to be helped by visual schedules or social stories (13% vs 19-23%). HSN were the most helped by assistive or adaptive technology (21% vs 3-10%).
For food and drinks, grocery delivery was helpful to 24-33% of respondents. Ready-made or pre-made meals were helpful to 58% of MSN and 43-47% of LSN and HSN. Meal delivery was helpful to 50% of HSN, 42% of MSN, and 35% of LSN. Overall, 26% of LSN, 21% of HSN, and 14% of MSN didn't find anything else helpful.
For hygiene and grooming, 39% of MSN and 29-32% of LSN and HSN found electric toothbrushes helpful. 21-28% found dry shampoo helpful. HSN were most helped by products made for kids (57% vs 42% MSN vs 21% LSN), hand, body, or baby wipes (61% vs 35-36%), and shoes without shoelaces (50% vs 22% MSN vs 9% LSN). Overall, 26% of LSN, 22% of MSN, and 11% of HSN didn't find anything else helpful.
For health and safety, 61% of MSN found online patient portals or medication refills helpful (vs 36-44%). LSN were the least likely to be helped by information cards or sheets about their disabilities (15% vs 33-36%). HSN were most helped by medical alert bracelets, wallet cards, or phone apps (46% vs 25% MSN and 9% LSN) and child-proofed or safety versions of products (39% vs 19% MSN and 0% LSN). Overall, 29% of LSN, 25% of HSN, and 14% of MSN didn't find anything else helpful.
For managing a home, HSN were the least likely to benefit from an in-home or in-unit washer/dryer or dishwasher (46% vs 74-75%). MSN were the most likely to benefit from cleaning technology like a Roomba (19% vs 7-12%). LSN were the least likely to benefit from using disposable plates, cups, bowls, or plasticware (18% vs 36-39%). Across groups, 9-17% benefitted from paying for cleaning services. Overall, 21% of HSN, 8% of MSN, 3% of LSN didn't find anything else helpful.
For being in the community, HSN were the most helped by disability transit (32% vs 3-11%) and by wearing something like a lanyard to indicate they have a hidden disability (43% vs 31% MSN vs 21% LSN) but the least helped by rideshares (4% vs 18-22%). LSN were the most helped by public transportation (50% vs 39% MSN vs 18% HSN) but the least helped by placing orders online or on the phone (50% vs 61-69%). Overall, 18% of HSN, 15% of LSN, and 8% of MSN didn't find anything else helpful.
For managing finances, LSN benefited the most from online banking apps or websites (82% vs 57-61%) but the least from government support or benefits (15% vs 36-43%). Across groups, 18-22% benefited from budgeting apps or other budgeting tools, 19-25% from only paying with cash or a pre-paid card, 43-47% from autopay options for bills, and 3-11% from financial literacy classes. Overall, 21% of HSN, 14% of LSN, and 11% of MSN didn't find anything else helpful.
For socializing, 81% of MSN, 68% of HSN, and 53% of LSN benefited from online text-based social opportunities. 53% of MSN (vs 39-41%) benefited from hobby-based communities or social opportunities. 21% of LSN (vs 8-14%) benefited from community groups like religious or cultural organizations, but 12% (vs 42-46%) benefited from disability social groups. 32% of HSN (vs 15-19%) benefited from books with social scripts, scenarios, or explanations of figurative language. Across groups, 15-25% benefited from video or audio-based social opportunities, and 3-11% from videos modeling social interactions. Overall, 21% of LSN, 18% of HSN, 11% of MSN didn't find anything else helpful.
Consequences of Not Getting Enough Support
Without support for food and drinks, 3% of LSN respondents would starve to death, and 22% would be unhealthy; for MSN, 3% would starve, 17% would get very sick, and 33% would be unhealthy; and for HSN, 46% would starve, 21% would get very sick, and 14% would be unhealthy. The percent of respondents that would be okay without any support was 22% for LSN, 6% for MSN, and 0% for HSN.
Without support for hygiene and grooming, 6% of LSN respondents would get sick, 6% would be very unclean, and 24% would be disheveled or smell; for MSN, 6% would get sick, 20% would be very unclean, and 23% would be disheveled or smell; and for HSN, 54% would get sick, 21% would be very unclean, and 14% would be disheveled or smell. The percent of respondents that would be okay without any support was 45% for LSN, 20% for MSN, and 4% for HSN.
Without support for health and safety, no LSN respondents would die, 9% would get very sick, and 35% would be unhealthy; for MSN, 8% would die, 28% would get very sick, and 19% would be unhealthy; and for HSN, 29% would die, 39% would get very sick, and 14% would be unhealthy. The percent of respondents that would be okay without any support was 9% for LSN, 3% for MSN, and 0% for HSN.
Without support for managing a home, no LSN respondents would be homeless, 9% would have a hazardous home, and 45% would have a very unclean home; for MSN, 17% would be homeless, 20% would have a hazardous home, and 46% would have a very unclean home; and for HSN, 39% would be homeless, 32% would have a hazardous home, and 18% would have a very unclean home. The percent of respondents that would be okay without any support was 6% for LSN and 0% for MSN and HSN.
Without support for being in the community, no LSN respondents would be unsafe, 9% wouldn't be able to access their community, and 6% would frequently get lost or have meltdowns; for MSN, 12% would be unsafe in the community, 26% wouldn't be able to access their community, and 21% would frequently get lost or have meltdowns; and for HSN, 54% would be unsafe in the community, 25% wouldn't be able to access their community, and 7% would frequently get lost or have meltdowns. The percent of respondents that would be okay without any support was 32% for LSN, 9% for MSN, and 0% for HSN.
Without support for managing finances, 9% of LSN respondents would die, be very sick, or be homeless, 15% would be in poverty, and 24% would live paycheck to paycheck; for MSN, 40% would die, be very sick, or be homeless, 11% would be in poverty, and 9% would live paycheck to paycheck; and for HSN, 64% would die, be very sick, or be homeless, 18% would be in poverty, and 7% would live paycheck to paycheck. The percent of respondents that would be okay without any support was 20% for LSN, 6% for MSN, and 0% for HSN.
Without support for socializing, 9% of LSN would have no one in an emergency, be severely abused, or severely hurt others, 35% would be very lonely, be taken advantage of, or badly upset others, and 9% would have only shallow relationships; for MSN, 15% would be isolated or severely at risk, 47% would be lonely or at risk, and 9% would have only shallow relationships; and for HSN, 48% would be isolated or severely at risk, and 48% would be lonely or at risk. The percent of respondents that would be okay without any support was 9% for LSN, 0% for MSN, and 4% for HSN.
Overall Need for More Support
Most LSN needed more support in order to be healthy (53%) or were healthy with the amount of support that they had but would be less stressed with more support (41%); a minority were fine with the support they had (6%).
Half of MSN needed more support to be healthy (50%), but many were fine with the support they had (8%) or were healthy but would be less stressed with more support (28%); in contrast, 14% needed more support soon in order to survive.
Most HSN needed more support in order to be healthy (75%), but 4% were fine with the support they had, 11% needed more support to be less stressed, and 11% needed more support to survive.
Reasons for Not Having More Support
LSN respondents were the most likely to have been diagnosed too old for developmental disability services (41% vs 14-21%), to not be considered disabled enough for support meant for disabled people (59% vs 36% MSN vs 21% HSN), and to be ashamed or feel like they don't deserve more support (68% vs 42% MSN vs 29% HSN).
MSN were the most likely to say their friends, family, or community refuse to help them (39% vs 29% HSN vs 6% LSN) or can't help them (44% vs 35% LSN vs 29% HSN).
HSN respondents were the most likely to say insurance doesn't cover the services they need (29% vs 19-24%) and that they can't afford private-pay services (46% vs 31-35%).
Across groups, 28-32% had an IQ too high to qualify for developmental disability services, 18-26% weren't poor enough for services meant for low-income people, 0-3% couldn't get help because of their immigration status, 21-28% lived in area without the services they needed, 61-67% didn't understand the process for getting more support, and 7-15% lived in a community where getting support for a disability is highly stigmatized. 4-6% said they don't need more support.
Autism and Comorbidities
Autism Diagnosis
Formal diagnoses were most common in HSN (79%) followed by LSN (71%) and MSN (67%). 11% of MSN, 7% of HSN, and 6% of LSN had no diagnosis.
Almost all LSN were diagnosed with a non-DSM-5 diagnosis (26%), ASD with no level (32%), or level 1 ASD (29%); 3% had level 2 ASD. Most MSN were diagnosed with a non-DSM-5 diagnosis (28%), ASD with no level (17%), or level 1 ASD (11%), but 22% had level 2 ASD. Most HSN were diagnosed with level 2 ASD (21%), level 3 ASD (21%), or split-level 2/3 ASD (14%), but 7% had a non-DSM-5 diagnoses, 25% had ASD with no level, and 4% had level 1 ASD.
Autism-Related Support Needs
LSN self-reported that their autism was LSN (24%) or LMSN (76%). MSN self-reported that their autism was LSN (3%), LMSN (42%), or MSN (56%). HSN self-reported that their autism was LSN (4%), LMSN (7%), MSN (43%), MHSN (29%), or HSN (18%).
Mental Health and Developmental Disability Comorbidities
ADHD was equally common across groups (50-54%), as were anxiety disorders (56-67%), depression (41-50%), bipolar disorder (6-8%), somatic symptom disorder (0-6%), and substance use disorders (3-6%).
Tic disorders were most common in HSN (21% vs 0-6%), as were specific learning disorders (39% vs 22% MSN vs 6% LSN), intellectual disability (11% vs 0-6%), other cognitive impairment (32% vs 0-3%), expressive and receptive language impairment (36% vs 11% MSN vs 0% LSN), schizophrenia spectrum disorders (18% vs 11% MSN, 0% LSN), OCD (32% vs 25% MSN vs 18% LSN), PTSD (54% vs 44% MSN vs 12% LSN), and dissociative disorders (61% HSN vs 31% MSN vs 6% LSN).
Eating disorders were least common in LSN (18% vs 29-31% MSN and HSN), as were sleep disorders (12% vs 28-32%) and personality disorders (0% vs 21-22%).
18% of LSN, 3% of MSN, and 0% of HSN had no mental health or developmental disability comorbidities.
Physical Health Comorbidities
For physical health comorbidities, there were no group differences for metabolic or endocrine disorder or injury (6-15%), renal or urogenital disorder or injury (0-9%), reproductive disorder or injury (6-11%), skin disorders (3-13%), blood disorders (0-4%), immunodeficiency (0-6%), cancer (0%), long-term infectious illness (0%), and limb loss or serious injury (0%).
Neurological disorders or injuries were the most common in HSN (44% vs 9-11%), as were cardiovascular disorder or injury (26% vs 3-9%), lung or respiratory disorder or injury (26% vs 14% MSN vs 6% LSN), and gastrointestinal disorder or injury (48% vs 31% MSN vs 9% LSN).
Autoimmune disorders were the most common in MSN (17% vs 4-6%), as was fibromyalgia (34% vs 19%).
Epilepsy was the least common in LSN (0% vs 9-11%), as were spinal cord or nerve disorder or injury (0% vs 11%), musculoskeletal disorder or injury (6% vs 17-22%), connective tissue disorders (16% vs 37% MSN vs 44% HSN), severe allergies (3% vs 11% MSN vs 19% HSN), hearing or vision loss (3% vs 14-15%), and post-viral syndromes (19% vs 29-30%).
28% of LSN, 9% of MSN, and 4% of HSN had no physical health comorbidities.
Other Demographics
Age
Most LSN were between 19-21 (26%), 22-25 (24%), or 26-30 (29%). Most MSN were between 19-21 (39%) or 22-25 (36%). Half of HSN were between 19-21 (50%).
Sex and Gender
Most respondents were AFAB (92-97%). 32% of LSN, 26% of HSN, and 19% of MSN identified as women. 15-22% identified as men. 47-50% identified as nonbinary or other. 4-8% across groups weren't sure.
Race and Ethnicity
85% of LSN, 74% of MSN, and 71% of HSN identified as White. Black or African American ranged from 3% (LSN and MSN) to 11% (HSN). Asian ranged from 3% (LSN and MSN) to 11% (HSN). Native or Indigenous ranged from 3% (LSN) to 8-9% (MSN and HSN). Hawaiian or Pacific Islander ranged from 0% (LSN and HSN) to 6% (MSN). Hispanic or Latino/a/x ranged from 0% (LSN) to 6-7% (MSN and HSN). Jewish ranged from 3-6%.
Referral Source
Reddit was least common for HSN (7%) and most common for LSN (18%). Tumblr was least common for LSN (65%) and most common for MSN (81%). 19% of HSN vs 3-6% of LSN and MSN respondents were referred through Discord. 15% of LSN and 0% of others were referred by a friend.