Level 2 Support Needs Explained by an Autistic Person Who Needs Substantial Support

[@jessicav2031]

I really feel the "disingenuous" thing. I work really hard to appear normal but the thing that gives me away, as others describe it, is that I am "too nice". Everyone thinks it can't be real. When they realize it is, usually after knowing me a little bit, everything changes and they see me more as a child or whatever. "Wow, she must be naive." (But I'm not.) Honestly, I think it's nuts. We're actually at a place as a society where being a genuinely nice person, even to people who don't reciprocate, marks you as a weirdo.

[@Athmarr]

Reminds me of Dostoevsky's The Idiot. Main character is genuinely nice and no one can believe or deal with it and it is used against him. It's a very depressing book as it feels too real. (I've not actually read the book as I'm afraid I won't be able to handle it. People just told me about it so take this comment with a grain of salt)

[@amandaking9527]

So real. My voice is somewhat childlike, I love bright colors, and have an unconventional style. It’s so hard to be taken seriously😭 just because my comforter has butterflies on it does NOT mean I am a child. Other people just don’t have WHIMSY

[@deirdrestatham5730]

Hoo boy. Yes. I've had so many people tell me I'm "going to heaven" because I'm so nice and honest. They have NO IDEA how to process it when I say I am not religious and don't believe in heaven. They can't fathom being nice without a "reason" such as going to the good place in the afterlife. lol

[@jessicav2031]

​@@deirdrestatham5730 Heh, yeah, and the religion thing doesn't make any sense either, right? If you're just being a good person because you're afraid of consequences, you're not actually a good person. I simply don't understand why most people seem to have this pathological need for calculating revenge, vindictiveness, and anger. Life is so much better, and easier, if you just don't. Maybe Jesus was on the spectrum, right? 😁

[@deirdrestatham5730]

@ That’s ALWAYS my reasoning. If you need a religion to tell you not to steal or murder… are you actually a good person? 🤣🤣

[@MWear-x8t]

Level 1 autistic people can often thrive, until they can't. I thrived (ok, sort of) I went to university and I worked in the summer, but there was no way I could have worked while going to school. I only took 3 or 4 courses a semester instead of the usual 5. So it was low level thriving. I crashed in my 30s because everything was too loud and busy and fast. If I worked, I had to curl up in a ball in the dark when I got home rather than hang out with a friend. School had a low lit library that I retreated to between classes, so it seemed like I was thriving. My work place did not. I worked somewhere where they changed the scedual on you at the last minute or asked you to fill in for someone unexpectedly. I would not be able to sleep the night before if I thought something was going to happen at work I could not handle. Anyway, it was my health that collapsed from the overstimulation and social anxiety. I just had more physical resilience in my 20s so I thought I was handling it.

[@VCJyJ2010]

Hello, I relate to your experience. I’m a self-identified autistic (born in 1976) and the mother of an autistic teenager (diagnosed as level 1) I did well enough at school in the academic but I struggle with the social part, couldn’t understand why I have that hate/like relationships with my peers. Secondary school was harder because some teachers thought that I have “a to strong will” and they needed to “template my character” (more like tame me) academics were always okay. In the university I struggle to adapt, everything was different and I have to much “freedom”, so many different people, I was awkward. I managed to complete my career. I entered to a PhD program that was hard for everyone not just me, I made some friends and we studied together so we all completed the first part of the program and became PhD candidate.Then it came the research project and all started to crumble, I didn’t fit, they expected me to be someone I’m not, and some of them just ignore me as much as they could, like a problem that will go away on its own… I work odds hours try hard but Feeling so out of place make me more isolated and the research didn’t went as expected either but I was in the final part so I embraced it, so after 4 years of research, working another job to support myself (because my fellow ship ended at the 2 year of research) I just have to finish writing and have the private and public defense of my research. In the meantime I had got married, moved to another country for work reasons and have a baby. I return to my country with my 4 month old daughter for my last two presentation to get the PhD, I have been in contact with one of my supervisors back and forth for month to get everything perfect, my other supervisor ignored me most of the time. I presented my results and they failed me and decided that I should re write the whole thing on a different way… one of my supervisors leave the exam before the committee give there comments, my other supervisor didn’t understood why they failed me or how should re write it. The committee expected me to stay in my country until I finish the “corrections” at that point I collapsed and decided to give up… I couldn’t anymore… and I have a baby to care for, all the rest went to a second plain. After that I have never been able to try again, I just had sporadic or part time jobs… I can’t even do interviews, Just to think in go back to work is unbearable. Like you said I seem to have lost the resilience that I have when I was younger. I’m trying to figure out what to do to help my family financially without having to go to work but isn’t easy… I’m not a business person, I’m not IT… thanks for sharing. And thanks Holly for the video

[@ragdollrose2687]

Highly relate to that. What feels strange to me at the moment, is that I'm in pretty noticeable burnout without the luxury to drop everything because I don't have the ressources to stop working/studying (doing both at the same time out of necessity) and, usually I would be certain of being low support needs (level 1) but lately I feel the need of having someone hold my hand and tell me to do every step of a task or just do it for me because I'm exhausted... but I just don't have that. So I keep going, feeling like shit all the time and it definitely shows that I can only do SOME parts of life. So I could say I'm level 1 until things get bad and my "crashes" get to level 2. I also have POTS and CFS, so that's not helping cause my body hurts all the time and I'm feeling exhausted physically on top of mentally... Sorry for the rambling/complaining, things are gonna get better soon cause I'm making very positive changes. But yeah felt like sharing about this weird space we can get in as Level 1s in a bad spot

[@ruthhorowitz7625]

Yes, I sort of thrived until I was 57. Been in severe autistic burnout for over 3 years. Finally starting to recover now.

[@VCJyJ2010]

One of my favorite autistic content creator, Paul Micallef, says level one means invisible struggles.

[@MWear-x8t]

@@ragdollrose2687 Not a doctor, but go to one and have your b vitamin levels checked, iron, make sure to eat lots of protein. More than the recomended. People with anxiety, and hyper flexibility and many other conditions need more protein. I know for myself If my vitamin and mineral and protein is high and I am sleeping I am like a different person. If you're addicted to sugar, treat it like a real addiction and deal with it. Make sure you don't have a parasite or anything else dragging you down. Oh, if you need b-vitamins you may need to take them in liquid form in the mouth instead of swallowing, but you can try pills first. Ok, good luck. Also, don't beat yourself up if you can't do it all at once, maybe it will take longer to get through school than you want.

[@NitFlickwick]

I feel like one of the most misunderstood things about autism is the spiky profile. I’m level one, and in many ways, I can support myself, but that doesn’t mean I don’t have any significant support needs in certain areas. Thanks for sharing this.

[@Rylinabee]

That’s because it’s SPECTRUM not levels.

[@hollyoddly]

Yes! I agree, and that's what can make the levels so confusing and add an extra layer that needs to be addressed.

[@SuperHappyNotMerry]

the death thing is a very real one for me. I feel so bad for relying on my parents as a 29 year old but I genuinely worry about what would happen to me the day they die because I don't know if I could work enough to support myself. in the past I've been able to work full time for 2-4 months at most before going into pretty bad burnout so without their financial support I would either risk being homeless or go into pretty debilitating burnout just to stay afloat. I've sometimes wondered if this level of support needs still qualifies as level 1 but I was shut down pretty quickly on that because I _can_ work, even if by a certain point I get so burnt out that quiting becomes a legitimate matter of life or death because I start to have suicidal ideation from how tired I am

[@tutmosispagnotta]

❤

[@panasado7886]

Same! But I'm 25. I've been thinking if I should seek diagnosis a second time, because I don't know if I see myself as level 1... When I get burnt out I barely feed myself (with snacks)

[@hollyoddly]

I work from home, and I am a level 2, so I don't think working should be a barrier to that. If Chris wasn't around to help me run my business, I wouldn't be able to do it, and so I wouldn't have a job at all. It definitely sounds like you need more support. 🖤

[@RoxyTrevellas]

Same. I'm 39 and a single mum and I can do an office job for less than year now before burning out and then it takes me almost a year to recover. My mum helps me financially and with childcare. And my daughter is awaiting diagnosis, too. I worry so much for her future.

[@soundmind69]

Hmm. Maybe I have this problem. I can't even get dressed in the morning without a meltdown let alone work normal full hours or finish school to get a real job

[@woodookitty]

I was diagnosed with level 1 Autism at age 38, however I can't drive, have issues talking on the phone for things that i need done, can't go to a store without shutting down, get irrationally angry whenever someone gets a little long winded, have frequent meltdowns, can't handle finances by myself, can't really clean, sometimes can't handle personal hygeine tasks(sometimes going weeks between showers), have issues with sounds and lights and will cover my ears or eyes in public, rock back and forth all the time, have super intense interests, was in special education in K-12 due to having issues remembering things or doing things, was in speech therapy as a child, also have ADHD, and rely very heavily on my husband for social interactions, driving, paying bills, etc. I had a meltdown the other day handing out shirts to people because they weren't folded the right way. I think a lot of times when people who are of an older age are getting a diagnosis they're being given "level 1" as a default because they are an adult who is "independent". What are your thoughts on this?

[@olivegrove-gl3tw]

my dad has almost all your traits, he was diagnosed with a bipolar disorder

[@morrows10]

@@olivegrove-gl3twI hope your dad gets further help.

[@olivegrove-gl3tw]

@morrows10 yes thank you, we have a future appointment in December for him, it was so hard to get there not enough doctors in oregon

[@sunnya8]

@@olivegrove-gl3twthere are not enough doctors anywhere. The ones near me want $1000 cash for an assessment:

[@ninaromm5491]

@woodookitty . Relate, relate, relate ! Especially the shower issue ! 😢 Drives one mega-crazy... Yep. Sorry - can't offer any solutions. But, thanks for your 'encouraging' post 😅 Best regards ❤ P.S. Also a cat lover, and cat artist

[@rosemartellaro802]

I have level 2 autism and I have a very large vocabulary but I do speak in a clipped jerky way that is short but often using large words. My best friend says that my speaking is very "precise". My struggles with change or new things normally appear as paralysis; not leaving my bed or eating for days. I live in section 8 and get disability. I have worked on and off but it always feels like im floundering. I come off as smart and people don't always realize how much Autism impacts my life.

[@hollyoddly]

What you said is so important! I think often something as simple as having a large vocabulary can "throw people off" to what our real needs are. I love using words I find interesting or that more accurately reflect what I'm trying to convey, but I do find that I use those same worlds over-and-over. Our language, whether large or small, often doesn't portray or strengths or the kind of support we need.

[@misspat7555]

@@hollyoddlyI’m AuDHD twice-exceptional, and am constantly reminded that the world is very confused by someone who finds some things much easier than others, but other things much harder. It’s like they can’t react to both at once and have to pick one, which inevitably misses some marks badly. 🤦‍♀️

[@mynamejefffffff]

i'm level 2. these are some accommodations i need - my boyfriend has to remind me to go to the bathroom when i'm at his house, because my autistic inertia is 10x if i'm not 'in my element' - he or my mum need to read emails and messages i get, because otherwise i freeze up - i need to eat dinner between 6:30pm and 8:30pm otherwise i can't eat anything and also have a meltdown - i need to stim in new environments otherwise i cry - i do occupational therapy at uni to be able to get work done - i don't understand hierarchies and i apparently 'defy' my superiors often (i do not notice this) so i need to let them know i'm autistic beforehand so on and so forth

[@mynamejefffffff]

and yes everyone noticed i was "off" somehow. i've been on and off some kind of therapy since i was in kindergarten! but i'm female and i spoke earlier than most kids (i'm also intellectually gifted) so no one would diagnose me as autistic in the early/mid 2000s :/

[@hollyoddly]

I relate to so much of what you said! Thank you for sharing this. We need all sort of experiences from all of the levels to be seen. I think that's how we all feel a part of this community.

[@misspat7555]

Slow processing times and dyspraxia that makes movement difficult can LOOK like “defiance”. I’ve run into this problem a lot in “fast-paced” (so almost every workplace) environments. I’m back working in day care, where the goal is more surviving the day, and my lack of sound and smell sensitivities mesh well with the environment. I got permission to put up a whole bunch of fluorescent light covers, and I can wear comfy pants and t-shirts every day and no one cares. I also had a lot of success transporting special-needs school students (my ability to understand and accept non-verbal autistic kids raised my antennae on the possibility I was autistic myself a bit higher), but that was a part-time job.

[@annaphallactic]

I didn't realize that I might be Level 2 autism until you mentioned needing to be driven to the store. I moved to a large city with public transport right after I (barely) finished college, but I never got comfortable with driving--I am a safety hazard to others on the road 😅. If I hadn't left my hometown, I wouldn't be able to live independently at all. It's wild how much context changes things!

[@hollyoddly]

Yeah, if we can't drive and there's no public transport (or for some reason we don't feel we can take the public transport), then how do we survive? It's really hard! If I had to take a bus or a train, I would have to be shown many times the exact route I would have to take, and if any condition changed, like they were working on the train, or the bus came late, I would have a terrible meltdown. Hard to even think about!

[@honestalex5790]

I'm not level 2 but when I had no car, I had to walk/bike distances to get groceries home, and since I have a hard time asking for help verbally, I just dealt with it til I finally got my first car, driving is quite stressful but I manage, although I don't think I'd want to have to drive forever, I'd prefer walkable areas or maybe just having all my needs within radius

[@hollyoddly]

@@honestalex5790 That would be so ideal! I want to live in an autistic community where everyone can help out each other based on what their needs are and what their strengths are. Will never happen, but I can dream!

[@9crutnacker985]

One thing that annoys the hell out of me is the Dx criteria that everything MUST be 'externally' observable. The example here is Noticeable distress when faced with change. My childhood trauma response is dissociation & 'freezing'. What this looks like for me as an adult is calm and unperturbed. That's what it's meant to look like. That's what my brain did to keep me 'safe' but shts going on inside that alright. You've a very interesting point from 16:17 on. I've very few people able to give me support but my personal circumstances me I can fend for myself most of the time. By that I mean I own my home and am financially secure. Take away the finances to a level that I'd need a job and I'd be in real trouble to the point i might be homeless. I'd not really looked at that that hard. There's also a lot overlap in all levels with childhood trauma. I've been digging deep in this and I'm sure that if you're ND you will also have trauma (and their responses) and they can mask eachother (and then you mention your background and misDx...) That just never gets mentioned in the Dx criteria - because it's not even thought of? Good video. Self Dx AuDHD + cPTSD (extra).

[@travisnobleart]

Especially bothering are questions pertaining how others perceive me. How would I know how other people see me? They won't tell me, but it's clear I'm treated different.

[@hollyoddly]

You bring up an excellent point that we can be highly destressed and it not be visible but can be just as extreme and just as detrimental! Thank you!

[@heatherrae901]

@@travisnobleartand that’s particularly difficult because I’m a loner who is more distressed when socializing so I avoid it. I have no idea how I’m perceived because I don’t stick around long enough to find out.

[@silvertoadstool123]

This is totally one of those things that’s limited by the scientific requirements of western medicine- long story short, people had issues with psychology studies not being replicated, so in terms of “true” science, something that cannot be observed is not “empirical”/scientific. Clinical psychology uses this research to inform diagnostic processes, and not every psychologist specializes in neurodevelopmental conditions. Unfortunately, the result is only being able to use observable behaviors or internal thought processes in a self report setting. If you don’t have the knowledge to identify certain experiences yourself or the ability to communicate that, proper diagnosis can be difficult. Also the measures themselves are constantly being rewritten/created, but there’s a ton of issues with how research is conducted and how realistic it is to replicate these studies because of ethical limitations. TLDR; psychological science is based on behavioral observations/statistics, & clinicians are often only observing you in office, making it hard to get a comprehensive profile.

[@letsallgoforawalk]

How are you financially secure without a job? I feel similar to you except the financial part has made me homeless.

[@arwynna.4715]

Thank you so much for this video! I've been searching the internet for more level 2 and level 3 autistic experiences, because I'm level 1 and I feel like my chunk of the spectrum has really overshadowed y'all recently. I consider myself low support needs and low masking so I already don't relate to most other level 1 people, and I feel like my support needs are higher than most level 1 people I know. I'm probably not level 2 because I live mostly alone and have been doing a good job cleaning and feeding myself, but my parents live nearby and still help me out a lot, and they're going to help me apply for a service dog. Things are complicated. Thank you for sharing your experience

[@hollyoddly]

Yes, it is so complicated because who's to say what support level you would be if you didn't live close to your parents or what that would look like. My parents have been a humongous source of support throughout the years, and I lived with them off and on when I was a young adult, among other people.

[@Butterfly828-x8e]

​@@hollyoddlybut couldn't it also be from traumatic experiences? I mean that they can make the former autistic trades more worse like stronger? And traumata can cause symptoms that can look like those from autism. So how is it possible to get diagnosed properly?

[@h.m.b.-s.9498]

I lived completely alone for 9mos and in a dorm/with a roommate for 2yrs, and I even had a job during the time I was completely living alone, but I still relied on my parents for additional financial and logistical support. I was able to feed myself just fine (I like to cook) and (kind of) clean, and even saw friends regularly, but if my parents hadn't been able to help out, I don't think I would have managed most of it.

[@coda3223]

​​​@@Butterfly828-x8e I have found it helpful to recognize and remember that every person's neurodivergence is unique. The neurotypes are more about recognizing *patterns* of neurological differences and experiences and not about accurate describing any one person's actual neurology.... so if you're autistic, have ocd, cptsd, and migraines - they are not separate from each other. They're all parts of what makes you neurodivergent. Getting diagnosed properly is about finding a doctor that will listen to you, trust your experience, and work with you to get your support needs met and help you with your self discovery journey. (In my experience anyway)

[@sadiedc3457]

I’m diagnosed autistic level 1. My specialist who diagnosed me said I would not have been able to graduate college without accommodations if I was level 2. I did drop out after my first semester, then when I went back to school, I developed OCD and anorexia. I was also bullied for my autistic traits (didn’t realize it was autism at the time) and the only people I got along with were a couple of autistic guys in my dorm. I haven’t been able to do much with my degree. I work part-time seasonal retail right now at a pretty relaxed easy job. I’ve worked retail where coworkers have said “This is so easy! Anyone could do this job,” which made me feel awful because I burn out and it’s not easy. I live with my parents. I used to live alone in a very cheap location but it was hard to maintain work and I was so so lonely, I would cry at night. Making friends is so hard. The only people who want to interact with me are people who see me romantically/sexually. People don’t clock me as autistic but they do see my as shy or rude. I can drive but I don’t drive on the highways and if it’s a long drive then I need my mom’s help. If I’m tired or sick then I don’t feel comfortable driving. Driving makes me nervous. I’ve almost become homeless once. I’ve almost been s*x trafficked. I’ve been in dangerous situations. I’ve taken long walks alone. My common sense for safety hasn’t worked as well as others but I’m working on it. I used to have meltdowns and cry almost every day. I’ve worked a lot on my emotions and being kind to myself. Plus I have a more suitable job. Now I rarely cry. I am mostly a sensory avoidant and stimuli has negatively affected my life. I’ve lost sleep over noise triggers. I don’t like eating with others. It’s very hard to have roommates or live in an apartment because it’s hard to have a safe space free from noise triggers. Besides the noise sensitivity which is the hardest part of my autism (although my specialist did label it as ‘mild’ for my diagnosis), is trying to accept that what I want to be, will probably never come true. Luck aside, I’ll probably always be poor. Sometimes I wish to become a manager instead of associate but I can barely handle being a part-time associate. It’s not likely I can get hired to use my degree. I enjoyed studying and sometimes passively observing in class but building up the resume, applying, interviewing, is a whole other ball game.

[@stuffz4040]

Reading this felt like looking in an internal mirror. I was diagnosed with Asperger’s when I was really young and then situations changed a couple years later so I never received any official treatment, support, and barely any recognition of it. When I get to a more stable place I want to find someone trusted so I can get a proper diagnoses with support levels so I can understand what help I might need and why, I’m also seeking an official diagnosis for OCD but I’ve put off trying to really treat it and anxiety meds (for generic anxiety which is easier and safer to get on record), treat it to a significant degree so I keep tricking myself into thinking it isn’t a problem. I constantly run into feeling like I can do the normal hard things but struggle with what are supposed to be the easy steps. I used to love school, and while I didn’t think the academics were easier, it was the easiest part to handle for me, and I felt like no one understood when I explained it.

[@bucketfriend297]

This sounds so hard and it’s wild to me that you were diagnosed level 1.

[@thehollyannrose]

@@sadiedc3457 unfortunately since you were diagnosed as an adult you’re automatically considered level 1 basically for the same reason as you were told, you’re supposed to need supports to grow up and THRIVE but idk about you but I never thrived in life, especially growing up. Heck my mom kicked me out when I was 17 due to my meltdowns and my overstimulations cause me to slow down and freeze, which would make employers do the cut my hours until I quit thing. I’ve been homeless so many times too. Luckily now I have an amazing supportive husband

[@NidusFormicarum]

Yes, noise is terrible and that people don't understand what it means to be autistic. They more or less think that you just need the right tools and accommodations and once you get that you can learn to be as everyone else. It doesn't work like that. "You are verbal - you are good at word play, you can express your and other people's feelings, you speak several languages - so you don't seem to have any communication issues." "It's hard to understand how someone as intelligent as you..." "But I have seen you make it before so I know you can." "You have to do this and that!" (Like calling my landlord which feels impossible to me.) "If you can go to concerts alone you can't possibly have any issues putting your clothes where they should be." "If you can travel alone to Greece, you don't need any daily support." Etc., etc. They can't grasp that you can write (classical) music, compete in chess tournaments, create advanced math problems, learn long monologues in the theatre by heart and know all the chemical elements' names, atomic numbers and chemical symbols and also wash the dishes, clean your clothes and pay your bills all alone and still don't manage to get your daily life to work because you don't get the support and help you need from society. For example I recently crushed my window in the kitchen. That was my way of trying to communicate with my landlord that my neighbors were having a party upstairs etc...

[@hollyoddly]

Everything you said resonates a lot, especially with what other people have also said in the comments, too. I hate that we live in a world that is not made for us, or even to accommodate us. I think we have so much to give to the world that they will miss out on.

[@cats.are.my.people]

Fellow level 2 here. Diagnosed as an adult. My autistic traits were all placed under the umbrella of anxiety most of my life. Thank you for making this video! It’s hard to find representation for level 2 on social media so thank you! I know exactly what you mean about the mental wall! I also relate to the death thing. I feel like my support needs fall more under executive dysfunction type things than social. Not that I don’t have struggles socially, I do I just don’t have as much difficulty with language and communication and I don’t have an intellectual disability, but I do definitely have executive dysfunction and my independence skills are not the same level as my peers and have developed more slowly and with more difficulty. I feel like there is so much variation of how support needs show up in level 2.

[@hollyoddly]

Thank you for commenting because I felt like I couldn't really explain "the wall" and was worried no one would get what I was saying! Yeah, there is a lot of variations within every level, and I know it really trips people up. I know I didn't do a perfect job getting all the info in there or explaining it well enough, but I'm glad you felt seen, because that's what I was hoping for at the end of the day. To see and be seen. 🖤

[@AJB_twoleftwings]

15:37 “if they don’t know what autism is they notice *something* about me” hit home so badly. I didn’t know I was autistic until I was 19. But everybody knew something was “off” about me. It even made me friendless for large parts of my childhood and nearly destroyed my family relationships because while I appear “normal” in a lot of ways, I can’t seem to find anybody who doesn’t treat me at least a tiny bit like I’m a freak. And I never understood why, and neither did they. All they knew was that I was different in some unplaceable way and that scared everybody off from actually spending any time with me. I’ve had more social problems than even the vast majority of the other late diagnosed autistic individuals I have met via online etc. and it’s mostly because I can’t seem to cover up this “something” that always made me extra different. Same with coming across wrong. I don’t come across as disingenuous at all, but I have been told that I come across as intimidating, angry, or annoyed when I am not.

[@hollyoddly]

Yes, I feel this so much!! It makes me wish more of us had lived around each other growing up. I would have loved to have hung out with someone like me.

[@AJB_twoleftwings]

@@hollyoddly exactly! I don’t even have other autistic people in my immediate family, so especially with being late diagnosed, I’ve just felt completely isolated my whole life. When I found out I am autistic, I was so desperate to find someone who is like me, I tried to evaluate every one of my family members hoping one of them could fit the autism mold. None of them did, but I really wanted them to. It’s so hard being the only one! For so many reasons, although I think the worst part is the amount of misunderstandings… they ruin everything for me on a regular basis with my family members. We just don’t understand each others brains enough for communication to flow as smoothly as it does between just *them.* I would do practically anything to have someone in my personal life who was *like me.*

[@teodorasavoiu4664]

This is something that has been really difficult to explain to my therapist. People may not know anything about autism, but they will know immediately that something is off about me, from their perspective. As a kid it's gotten me bullied and mistreated (it's also easy to bully someone as naive as I was), and as an adult people just project all sorts of things onto me. So much so that I mask constantly in order to avoid friction - but masking also shows, so really there's no winning. Being with other people is so stressful, even though I've developed communication skills to deal with it over time. It's tiresome and alienating. And even when meeting other autistics (fortunately, at least, we seem to gravitate around one another where I live) they are also usually masking in a way that's based on their lived experience with allistic folk, so there are layers and layers of translation going on no matter who you're interacting with.

[@beanpasteposts]

Oh my god, another verbal lv2 austic person! We're so underrepped in online and adult autistic spaces 😢 Thank you so much for this video!

[@hollyoddly]

Thank you for commenting!! If you didn't speak up, I would just be screaming into the void. This makes me feel so much less alone.

[@pkwork]

0ne of the words in ASD is Spectrum. On a support scale of 0.0 to 4.0, where 0.0 means needs no support, and 4.0 means must be completely supported, no human ever is a 0 or a 4. Level 1, 2, 3 seem like trying to turn a ramp into a set of stairs. How do I know if I am a level 1 or a level 1.5, a level 2.9 or a level 3. What meaning do those numbers have. Can we not grow? Must we be considered one thing or another and that for the entirety of our lives? Thank you for this video. I am 77 and am sure more support would have made a positive difference in my life, and that less support would have been devastating. All in all I have been lucky.

[@hollyoddly]

@@pkwork I think this just showcases how different autistic people can be from one another. As an autistic person with very black and white thinking, I benefit from having a more concrete understanding of where I'm at with support needs and being able to define them to myself and others. Thanks for commenting!

[@somewhat-blue]

I agree with Holly about the need for some concrete categories, but I think it could help to break down the spectrum a little more - if I use your number line analogy, it sometimes feels like Level One covers 0-1.9 and Level Two covers 2-2.9 (and Level 3 covers 3-4). Definitely open to being corrected about this, though. I’ve seen so much diversity among Level 1 people, from “I can navigate my life on my own and autism is really only a challenge when it bumps into other people/society as a whole” to “I can technically survive alone but am not living anything close to a healthy or happy life”. I think some people would argue that Level 1 is 1-1.9 and anything below that just doesn’t count as autism, but those people still struggle a lot with their mental health and seem to benefit a lot from having a diagnosis. It just makes level one autism specifically a less useful designation, and because of this, people who do occupy that 1-1.9 space end up feeling like they MUST be level 2 or 3 (because they struggle so much more than other Level 1s) and accidentally make those designations less meaningful as well.

[@marieugorek5917]

it's a spectrum like light, not a continuum like 0-4. if it were a continuum, then people would be more or less autistic than other autists.

[@kashiichan]

​@@somewhat-blueThis is similar to how my psych explained it. We were discussing whether level 2 might be more accurate for me than level 1, and I asked "Is there a level 1.5?" She told me that there's no mid-level, so if my needs are "higher" than what level 1 describes, then that means level 2 would be appropriate as it "rounds up".

[@augustdearest]

i’m also diagnosed level 2! i’m 20 now and was diagnosed at 18. i can’t cook, clean, or drive, and i also struggle with hygiene tasks like showering and brushing my teeth. i’ll wear the same clothes for weeks at a time, i’ve never had a job, and i need my parents to organise every single one of my appointments for me. i also can’t speak in public. it feels like i’m passing through life without living it. thank you for making this video, it really helps me feel more seen :)

[@amy82910]

I was diagnosed at 17 and I’m now 19 and I experience every single thing you listed too. I so relate “passing through life without living it”, it feels like such a task for me to just survive let alone “live”. It’s nice to hear about someone the same age as me who shares my struggles :)

[@olivegrove-gl3tw]

hi I have a question. Please don't take it wrong, I'm just really curious, and I mean this with all respect. when you say your parents handle all your appointments, is it because you forget, or do you get anxious keeping track or it's just to stressfull? I've been reading a lot of comments of people saying this and I'm just curious :)

[@augustdearest]

@@olivegrove-gl3tw all good! it's a mix of lots of different reasons. i don't understand the appointment-making process, i don't know what to ask for and what information to give, i have unreliable speech that impacts conversation flow and cohesion, i have severe anxiety, and i need my parents to organise the dates and times that appointments take place because i have to work around their schedules as i rely on them to transport me since i cannot confidently/safely take public transport myself. i hope this makes sense! :)

[@olivegrove-gl3tw]

@augustdearest yes it does make sense, thank you so much for your input, it means a lot. I have a son who is 6 years old and I'm noticing he has a hard time comprehending how to shower and follow directions. that's why I asked. I'm going to be speaking with his pediatrician soon and I like knowing more from others.

[@hollyoddly]

I feel so much of this! And I'll do things like spend an hour putting on makeup because I enjoy it, but yet I haven't brushed my teeth in days.

[@mysha4381]

i'm currently in the process of figuring out that my support needs are actually more substantial than i originally thought, and i gotta say it almost feels more life-changing than figuring out i was autistic all-together. my diagnostic papers, back when i still had them, said i was diagnosed with asperger's (even tho my diagnosis was way later than 2013 but i digress.) now i don't even have my papers because my doctor "lost them" and refused to give them to me when i moved countries. i struggle with existing and living independently so much and i always thought it was a me problem, i was the stupid one that can't do basic tasks. finding out that not only am i allowed to have those needs, but i might also be able to receive support for them, it really feels bizzare (in a good, maybe hopeful way.) i want to genuinely thank you for this video, it is motivating me to talk to my mental health provider about getting re-diagnosed, this time properly, so i can access the support i need. maybe with the right help, life doesn't have to be so unbearable

[@hollyoddly]

Yes!! Being seen by other people with higher support needs has helped me so much. It also makes me feel less like I'm a failure and more like I am normal within my level of autism, that my traits and needs make perfect sense for what support level I'm on. I'm glad you commented! Thank you so much!

[@StudioHannah]

I’m L1 (as far as I know, the person who diagnosed me didn’t specify, but I’d be in the “Aspergers” zone if that was still being used) and know two people who are (likely) L2. They don’t drive, they need help with nutrition (forgetting to eat or only eating like… gummies for several days unless someone else gives them food), struggle keeping jobs, need financial help, and they’re also some of the smartest people I know. I adore them. I’d rather hang out with them than almost anyone else.

[@hollyoddly]

Thank you so much for saying this! I have level one people in my life mostly, and I love them so much! I love that we can all come together and appreciate our similarities and our unique points of view.

[@angelabeckman9203]

I'm level 1 but I've definitely had the thought of wanting to die before loved ones out of fear of not being able to take care of myself. Felt that ring so true.

[@hollyoddly]

It's a scary thought, right? I hate that it comes up for us!

[@ChronicallyJess]

Also level 1 and same here!

[@PhantomHouseplant2018]

I have always had a difficult time trying to figure out if I'm level one or two. This video has helped me a bit! I think I can come across as level 1 because I'm able to mask to some degree, but the mask tends to "fall off" quite often as well. I also have a lot of difficulty with simple things like housework, applying for jobs, paying bills, taxes, getting insurance etc. I only found out I was autistic last year ish and I'm almost 24. I thought I was just stupid, lazy etc and needed to get a grip and just be an adult, but I'm trying to remind myself that I'm just autistic, and I need help, but that doesn't make me a burden. I have strengths too

[@hollyoddly]

No, you are not any of those things! This world was just not made with us in mind, and we, the disabled people, are the ones expected to find work-arounds for that. It is so hard to be autistic, so I feel you so much on what you wrote. ❤

[@not.a.kewpie]

I was formally diagnosed at age 20, I am 23 now. When I was diagnosed I wasn’t given a level, I was much more dissociated then, very unaware of how my brain actually works, but my mom told them how much I struggled with everything, so I have a lot of “moderate to severe” marks on what they tested me on. As I get older I hit that wall more and more of things I just *cant* do or learn or understand. I feel so isolated due to my support needs and other disabilities. Everyone call tell there’s something up with me, shifty eyes, lack of eye contact, stims that are very obvious/loud/child like to other people. I’m often seen as rude, or I’m not understood at all, I can’t control my tone or volume well, I rarely can even hear myself talk. My partner is my caregiver and it’s a hard thing to accept. My mother is also a caregiver for me, and it’s been hell for our relationship to learn the reason for why I am the way I am. She’s getting better now, but mostly because of how visible and serious my conditions have become. It’s an ongoing struggle to accept how much my disability disables me. I definitely fall into the medium support needs category, which is so scary. At the same time, allowing myself to be myself has only led to more self love & more tools in my mental health regulation toolbox! Glad I found your channel, it’s hard to find content like this :3 Edit- my autism was also missed because my traits were blamed on foster care! my caregivers also thought I was difficult on purpose, and in my teens it was explained away as anxiety + depression + me just not wanting to try. Looking back I needed so much more support from adults that was just not possible got me to get

[@hollyoddly]

Thank you so much for this! I connect to so much of what you said!! On my assessment, my psychologist put "consistently loud." People often have to tell me I'm being way too loud in public. And yes!! Another former foster kid!! I feel like we are so rare!

[@freed1046]

Level 2 autistic here. Glad to finally find some other level 2. Like Holly I am also self employed and have been WFH for almost 15 years. I have quite high support needs and as an adult I still get that from my parents and from my partner. I the last years I have been getting a lot of great support from AI to help me with my communication style and skill. Success factors for me have been working in a very niche field where I have become an expert. One increasing concern is that my parents are really getting up there in age and will in a few years require assistance themselves. Take care everyone.

[@faeriesmak]

My issue is that that I have 2 autistic children who need support and y elderly autistic mother lives with us that I have been supporting since age 15. Being stuck between those two has prevented me from getting much support. I am pretty sure that my children and Mother are all about a level 2.

[@sarahperdew2545]

I have schizophrenia and my husband has ADHD and we take care of eachothef everyday and my mom and dad and brother and sister support me and my grandparents are hetting old and inwant to take care of them - thank you for this video ❤❤❤

[@pardalote]

I have level 2 as well and AI plus Grammerly have been a lifesaver with my written communication for work. I am also self employed.

[@raphaelbell2791]

This is interesting because if I am autistic I am definitely Level 1 but my ADHD makes it so that I really struggle to take care of myself. Genuinely I need more support in order to live in a safe/hygienic way but I can survive (with a lot of family help and a great deal of stress) so as far as the doctors are concerned I'm fine. Anyway, this is a very interesting video! I have only just realised that I am very likely autistic and know very little about the autistic community beyond the people I personally relate to a lot (who I have been following so that I can compare experiences which may help figure out if I'm autistic). So it is very good to hear more diverse perspectives. I also really appreciate the way you advocate for those with Level 3 support needs. Solidarity with those who have greater needs and especially those who struggle communicating for themselves is so important in my opinion.

[@hollyoddly]

Thank you so much! And you are right. There are so many variables and co-occurring conditions that complicate what support looks like for different autistic people. The levels are far from perfect, but they help me to convey my needs to others.

[@raphaelbell2791]

@@hollyoddly yes - no language is perfect but if it's useful then it is important :)

[@CreativeAutistic]

Thank you for sharing your knowledge and wisdom, Holly. I need to learn WAY more about Levels 2 and 3 and this video is just *so* useful - thank you - and I would love to see way more conversation in our community about what each level actually means in an experiential sense, rather than looking at/discussing unhelpful infographics, such as the one you shared. And for me, as a Level 1 autistic, your explanation evidences how support needs can change throughout our lives - for instance, I had a very difficult time in my mid 20's and I completely lost my ability to mask for a couple of years, and I can certainly relate to many of the points you've shared. Super educational and thought provoking, thank you. Looking forward to more of your videos and I hope you get those interviews! 🧡

[@hollyoddly]

Yes! You touch on a topic I didn't quite get to in this video, which is that we can both lose and gain skills throughout times in our life where our mental health is affected. Thank you for bringing this up, because our mental health greatly affects how we move in the world and what supports we need. We simply can't know everything about the total autistic experience, and we make videos around our own experiences because that's where we have the most knowledge, and I know we don't want to step on the toes of people in different levels or say the wrong thing. That's where I think it would be lovely if we could say things like, "I wonder what other levels of autistic people think about this. How do you see this topic? Comment on your experience below." Even that small thing where we just get curious and offer people of every autistic experience a chance to be heard would be really cool. I love your videos, btw! I don't see a ton of people talking about women aging and being autistic and all the obstacles that brings. I benefit a lot from you content, so thank you, Lizzie!

[@CreativeAutistic]

@@hollyoddly Yes, I think a lot of the reluctance to specifically address autistic people with higher support needs is the real worry that we might say something clumsy or in some way wrong, but you've given some great suggestions here that I don't think could be misconstrued in any way. Holly, I wonder if it might be worth sending a cheeky email to Orion Kelly as I know he's had a fair few people on his podcast and I think you'd be a great guest - and I think the community needs to hear your suggestions of how we can include Level 2 and 3 autistic people without using clunky language. I've just looked and there's an email address on his website you could contact? Just a thought! 🧡

[@hollyoddly]

@@CreativeAutistic That would be wild! Maybe I will send him and email and see what happens! I know he is very busy, but maybe it couldn't hurt. I really love Orion's videos. They've been very helpful.

[@CreativeAutistic]

@@hollyoddly I think he'd love to hear from you. I agree that he seems a very busy chap but I suspect he's always on the look-out for new podcast guests for when he has the time available to make new episodes. Good luck! 🧡

[@Butterfly828-x8e]

​@@hollyoddlywomen are more adjusted usually, to fit into the society. That's why it's often harder to figure out, that's something wrong.

[@pianopanicattack]

realized today (after you expanded my understanding of how these support levels work, thank you) that after a while of just assuming i'm lvl1, i'm probably lvl2. one notable thing i have a comment on is when you mentioned when it's like everyone can tell. throughout my life it seems like literally everyone i've ever met for more than two seconds noticed i was autistic, and if not at least noticed SOMETHING was off... except anyone who could've diagnosed it as autism. who failed 3 times. i am, and have always been, VERY bad at masking. i have a comically long list of odd behaviours and routines i displayed as a kid that really should've been glaring signs. people would ask my mom "are they... y'know... on the spectrum??" so often that i was taken for 3 different evaluations as a child. and yet i remain officially undiagnosed. even though i am now glad it's not on paper for other reasons so blessing in disguise i guess, it does frustrate me sometimes because it means there's flaws in the diagnostic process. probably mostly cracks i slipped through due to being AFAB. i try to laugh at it instead though, because reading through that list, it IS kind of absurd how the only people who couldn't clock me was the people whose job it was. i was sorting beads by type for literal hours into an organizer case for fun, only to mix them back up in a bowl when i was done so i could sort them all over again. like, seriously, allistic??? uh, the strategic spreadsheet i made to try and make friends in school begs to differ. (no, it didn't work.)

[@hollyoddly]

I think there are huge flaws in the diagnostic process! There are flaws in the level systems, too. I hate that this causes people like you to fall through the cracks. I believe that self-identified autistic people are the same as formally diagnosed ones, but unfortunately that doesn't help those who aren't formally diagnosed get some of those supports they really need.

[@amy82910]

Thank you for this. I’ve been very unsure about how to classify my support needs but this has helped so much. I wasn’t diagnosed with a level and every time I looked at those infographics and websites that list things that aren’t support needs I was so confused. The fact that they’re mostly describing children doesn’t help either and as an adult I struggled to contextualise those things in my life. I think as an autistic person I also took them very literally and thought well since I don’t experience every single one of these things then I can’t be a level 2. Anyway it’s comforting to know there’s so many people similar to me and to be able to understand and help myself more.

[@hollyoddly]

Yes! I think at the end of the day, if the support levels help some of us identify what we need, then that is wonderful! Not everyone cares for them, but I have found that I can't always verbalize my support needs on my own. Framing them within the levels helps me to better understand myself and convey my needs to others.

[@Huh9631]

I’m a level 2 autistic person + I have adhd combined type. I was friends with autistic level 1 kids in school (before I left school due to it not being suited for me and before I was diagnosed) and I realised now I always felt like the odd one out amongst the other autistic kids because they didn’t seem to struggle in ways I did. They could socialise easily with each other and didn’t need as much assistance as I did. They even at one point didn’t like me for the way I struggled calling it an annoyance to them because I would often stim or be in my own world not totally engaging. It’s very lonely being level 2 because it feels like your too “high functioning” to be seen as “low functioning” but too “low functioning” to be as “high functioning” to other autistic people who don’t need much support. I also feel guilty from needing help from my parents when it seems like i can do things others can but really I just can’t

[@mynamejefffffff]

same! but also i felt like i didn't get why they felt the need to mask some traits, so at least i don't have that but i feel so childish when i say i need help with most social interactions, and that i have meltdowns a lot more often than them :/

[@hollyoddly]

Yes! I totally get what you are saying, and that's why I wanted to make this video. Some people in the comments are asking me why I feel a need to "bring up levels." People with substantial support, no matter what we call it, deserve to feel like there are other people like us out there, too. I do identify with things some people with less supports say, but there are ways I never felt seen before. Thank you for making me feel less alone.

[@JonBrase]

If you actually look at the DSM-V, it says the diagnostician should specify support needs levels separately for social communication impairments and for restricted / repetitive behaviors. But I've rarely seen someone given separate support needs levels (including myself with my own diagnosis).

[@hollyoddly]

Wow, that is so interesting! I did not know that! And, yeah, I've never heard of anyone who has two support levels. It goes to show that support levels are kind of the wild west.

[@Rhozyn]

@@hollyoddly Yeah, I wasn't given a support level myself when I was diagnosed either, because my Psychologist used ICD-10-CM exclusively, instead of the DSM-V, which is something to keep in mind with why many people may not know their support levels. The ICD-10-CM doesn't have any support levels, so they just diagnose "Autism" or "Not autism". I've heard the ICD-10-CM is generally what you see outside the US, and sometimes even US psychologists use ICD-10-CM. My therapist and psychiatrist have further identified me as needing level 2 support needs as well, but my diagnosis being in ICD-10-CM excludes them from the formal diagnosis, which can make it hard for Disability to understand, if they go solely off my Psychologist's results. It really does give a bit of an imposter feeling when you have the diagnosis in hand, but it doesn't say anything about the Support levels.

[@hollyoddly]

@@Rhozyn Yes! That's why I go on to mention that many people aren't given support levels in my video. It's really frustrating that disability doesn't account for this!

[@YamileYemoonyah]

This is why I think that general support levels don’t make sense. Each autistic trait could have a different level. Just because I struggle with executive function a lot, doesn’t mean that my social anxiety is at the same high support level.

[@CaitlinAMcCaslin]

wait you're right! I had read that before but hadn't thought of it much. everyone I know got just one level (or no level). I think having separate levels would help me with questioning whether I am level 1 or 2. it would make sense to describe me as having level 1 support needs with social communication and level 2 support needs with restricted/repetitive behaviors...

[@FeverDream5678]

I hate starting the shower too. (I know you said you CAN’T). I don’t know what is preventing you to do so, but for me it is these things - it is loud and unpredictable, the flow of water goes from 0-100 and it is startling, it is cold, and finally the last reason is that the distance the water has to fall from the shower head to the ground is a great distance and it is so loud and awful (until there is something blocking its path). I know I already said loud, but this is a bit different and I can’t explain. I could go on but I’ll stop here because it’s making me upset. To get through the process of turning it on I disassociate, hold my breath, close my eyes, and wear headphones.

[@hollyoddly]

Some of the things you brought up I have never thought about before, so thank you so much!

[@jenna739]

I got waterproof earbuds, and it made an incredible difference for me. I still don't like showers, but it drastically reduced the barrier to entry

[@someonerandom256]

I have to turn on the shower and wait for it to heat up before I can get in. I lose the ability to breathe when cold water hits me because I panic.

[@writerintransience]

@@jenna739 My kiddo hates the shower because it's so loud. She wears her headphones to turn it on, and then gets in. What waterproof earbuds do you use?

[@darcy3731]

The way you described it as an invisible wall is the exact description. There’s certain things I can’t do and I‘ve always tried explaining it in the same way, it’s just a wall that that appears and no matter how much I want to I just can’t do the thing. Explaining it to others, I can tell it doesn’t make sense to them but hearing someone else go through the same thing is so helpful. I always thought it was just me. Thank you for this video. It’s just what I needed

[@hollyoddly]

Thank you so much, because when you say you know what I'm talking about, it makes me feel seen, too!!

[@hollyoddly]

Since I've never been assigned as level 1 or level 3, I would love to hear from these other parts of the community because my knowledge is limited! Thanks to everyone who watched. ❤

[@faiora]

I’m diagnosed ASD1, but I’m pretty bothered about this numbering system in general, especially relating to late-diagnosed adults. I can’t drive and don’t know if I’ll ever be able to. I have spent eight hours standing in the middle of my kitchen, just staring, unable to start tidying because interruptions meant I had to start my kitchen-tidying ritual over again. I have conversational problems. I sometimes have a compete meltdown or inability to function when plans change. I dropped out of university because I couldn’t navigate the systems there. I’ve never lived alone. However, I’m happily married, raising kids. With enough energy I can mask pretty well (like you seem to). I am extremely productive once I get started on just about anything. The problem is, support needs aren’t static and they aren’t dependent on specific skills. The only thing numbering levels does is give people a way to be taken a bit more seriously, which is good when someone has substantial needs, but doesn’t describe what area those needs are in. Someone might be labeled ASD2/3 because they need constant mobility assistance, for example - but they might not need help with conversational differences, like needing written copies of things for clarification, or help navigating sarcasm or conversational reciprocity. It all depends on the person. So why is “being taken seriously” only given to a select group? Why are people labeled ASD1 because they’ve managed survival alone by virtue of having the right people around by coincidence? It feels like elitism within the community to talk about levels directly like that. I absolutely agree with supporting people’s needs to the degree it’s helpful to them… but not to a degree based on a sometimes-arbitrary number they’ve been assigned.

[@AJB_twoleftwings]

⁠@@faiora I like what you said. I personally can see the reason why there are “levels” of autism, because honestly if you look at level 1 versus level 3, there is a significant difference in the type of life and type of support and also levels of support and quality of life. So it does feel like having a way to specify where someone is with their support needs may be helpful in a lot of ways. However, you make a good argument for why they are more complicated than the world tries to make them. It is NOT cut and dry! There almost needs to be some kind of more complicated numbering system. (Like for example if we did something like Autism level 12345 where the first number is the level of support needs for mobility, the second is for social skills, the third is for something else etc… but even that probably wouldn’t be perfect and would require more evaluating than diagnosis currently takes, though maybe it would be better than putting us in a single box…?) sorry just brainstorming. But you are definitely correct that it doesn’t fully make sense! Level 1 is invalidated and receives less help than they need because they are stigmatized as being “barely autistic”. Level 2 is highly misunderstood by basically everyone even other level 2s and diagnosticians because it isn’t clear what level 2 actually means, and then level 3 is treated with the worst parts of the stigmas and hatred that is rewarded to autistic people in general, as well as constantly being treated as stupid. I don’t have a level assigned because I am only soft diagnosed (I have been recommended for diagnosis many times, but have not yet had the money to have the official evaluation done. So autism is written in my record, but not as an official legal diagnosis) but it is likely that they will label me as level one because I have an ongoing cooperate career and graduated with high marks in school. But i feel like i am in between level one and level two somewhere because I also struggle with other things, like memory and driving, and if my social skills were put in a level by themselves, ability to make friends or form any sort of positive connections with family would be level 3 and ability to perform social tasks pendulum swings between level one and two depending on what it is. I also struggle extremely badly with things like facial recognition and adhering to social norms. I can’t even go to the store without a binder full of information on prices of items etc, and have very little volume control. Plus more. But i am level one because outwardly when people don’t know me and see my life on paper of a job and a good fake smile and an extremely high vocabulary, they assume i struggle less and need no accommodations in the areas i do struggle in because they assume i can handle it on my own just because the basics in the outside seem to be handled on their own. It’s so flawed! And when i finally get diagnosed I’m not telling people my level if i am assigned level 1 because i already know several people that would for sure think level one it means I’m not autistic at all.

[@TheGenderlessAutistic]

​@@AJB_twoleftwings hi, in diagnosed with level 2 autism. Im not sure how familiar you are with the levels system, but i want to clarify. Every one with autism has 2 levels, one for their level of of social support thet need and one for the level of RRBs they need support for. RRB means restricted and repetitive behaviours. Im level 2 in both categories, but you can absolutely be split level and it's common to be. Also with in each level their are variations, id say im pretty certain of level 2, so their are level 2s who need less or more support than me. Like for me, I can communicate but I struggle to pronounce words properly and generally have issues talking clearly and using words the intended way, i relay on AAC and other alternative forms of communication. Then I also need assistance in all areas of life daily. I cant wash myself, eat, dress, go to bed, etc. independently. Im also only 3 points above the cutoff for a borderline Intellectual. My adversion to change disables me daily. My meltdowns are daily, and public too. My sensory issues are very disabling, they stop me from wearing required glasses and limit clothes i can were significantly. There is a lot more but thats an example of someone in the centre of level 2 Autism

[@MarinaMandarinaWoolyWorld]

Thank you. I realised that I am autistic 5 years ago. All my life I was sure I am just very shy, lazy, and definitely selfish persone - I was hearing all those names from my very demanding mother, so I learned how to pretend to be as others from very early age. 5 years ago, with help from my son's teachers, I started to learn about his autism and, yeah, got my eyes opened to my own neurological condition. It's like finally I got words, and I can name my feelings. Unfortunately, I also have got a very strong imposter syndrome and can't even imagine going and asking for the help I need. I understand myself, but I am still stuck in the loop, and I really need to get someone's support to be properly diagnosed... in the loop. My high-level masking abilities get on the way. Now I watch this video, and I am happy I am not alone, and also I got a very strong anxiety attack because i listen to you and understand until I speak up for myself, no-one will see I am struggling. But to speak up is very, very scary, because people may hear me. Telling you, stuck in the loop. And yes, my husband knows that I have to die first.

[@hollyoddly]

What you said about being in a loop gave me chills! I was in that loop for many years straight, and live was so bad for me. I really do hope you can get out of it. It's difficult if people are supportive and not fair that it can be so expensive an time-consuming to get help.

[@StudioHannah]

I just got diagnosed as a 34 year old and the impostor syndrome got worse for a little bit! I still hesitate telling certain family members because I don’t think they’ll believe me, as I’m very high masking. But I’m soooo much more relaxed and happy when I’m with people who I can unmask a little bit around, like my siblings. My life is slowly getting better with this understanding from myself and from loved ones. Definitely find some people you trust and practice reaching out to them, and you’ll get better at it over time! Get out of that loop!

[@matthewcrome]

I'm really happy to see a video like this when all I see in the media about autism is either level 1 or level 3! I'm also diagnosed as Level 2 by 3 different psychologists/doctors. However, I think there's a wide range to Level 2: it ranges from more significant cases of what would have previously been considered Asperger's (my doctors have told me I would have been diagnosed with Asperger's had been diagnosed earlier, and I still think it's a useful label because though it is a form of ASD, there's very specific traits/characteristics that define it that make it distinct from other forms) to people who have more severe cognitive/language/behavioral disabilities. I have worked with/known many people with autism and/or intellectual disabilities and am about to enter a program that is more for Level 2 people, and many of the people I know have very evident social and intellectual challenges and often do not have a particularly advanced vocabulary/may have significant language delays (which I think is a big difference between Asperger's and some other forms of autism - people with Asperger's often have very extensive vocabularies), but often have very prodigious memories/eyes for detail and excel in their "special interests". They likely will need care for the rest of their lives and qualify for resources for people with intellectual disabilities (which I wouldn't qualify for) as well as autism resources. Meanwhile I am clearly less impaired than that but still need help that a Level 1 person would not need (i.e. living on my own, managing friendships, personal awareness/safety, executive function, as well as managing sensory sensitivities), so I'm sort of "in between". And likewise the people I know would still need less help than a Level 3 person, since they can communicate their needs verbally and don't have profound challenges. Honestly I think the levels end up being kind of vague and don't describe the nuances of ASD adequately. There clearly are many different forms/severities, and lumping it into one category makes things confusing for clinicians, those diagnosed, and people trying to support them (though it is definitely a spectrum; but for example schizoaffective disorders are considered a spectrum but there's more specific criteria for the different forms).

[@hollyoddly]

Yes! With so many people on level 2, there are bound to be a lot of variation within the level! Thank you for bringing up ways that it can look different!

[@serachun2866]

I can't agree more with you. As a level 1 autistic person i can't specify my needs, i myself am not aware of them. And it can vary for time to time in my life so some level 1 ppl started advocating to naming it alternating needs. I wish the dsm will specify or make them separate because i also think the criteria have become vague. At the end it's a diagnosis it showed include treatment. Why should i waste my money experimenting with treatments it should be clear, so is my needs.

[@thatboringone7851]

I would say it's probably not helpful to lump people into different "forms" for the same reasons levels can be unhelpful - for autism, these are categories humans (who are often not autistic themselves) will come up with and apply (again typically by people who are not themselves autistic) in a way that doesn't necessarily reflect how support needs actually show up or work in reality. Neat and clearly separate categories of support needs don't exist, for the most part, people just separate them like that for convenience. And, that's usually not even for our convenience as autistic people, this tends to result in more stigma or hardship for us when others decide we don't present or appear enough like [insert stereotype] to really have those support needs, governments tend to use them to decide whether or not we need access to support systems often without looking at our actual support needs, etc. Support needs aren't always static, either. Burnout can intensify them, adequate support and better circumstances can sometimes do the opposite, life circumstances can alter our needs or uncover new ones or make previous ones obsolete, etc. People can need differing intensities of support as the result of the sum of all their support needs, but that doesn't mean dividing them by arbitrary levels or forms is going to be more helpful than assessing a person's needs directly (which is often ignored when people focus on things like levels).

[@theknitcycle]

Level 1 parent of a potentially level 2 kid here, and really appreciate hearing your perspecrive and experiences as I navigate both what I need and how to supporrt my child with their similar but different needs.

[@hollyoddly]

It can be so challenging to live with people with similar needs but maybe to varying degrees or who express those needs differently! ❤

[@CrisOnTheInternet]

As a NT I just want to expose to human diversity in many ways as possible. That being said, I keep in mind that each person, regardless of their background, conditions and so on, is an individual, so I can't put them in a box, I need to listen and learn how I can accommodate to be able to give support.

[@hollyoddly]

Thank you so much for listening! This helps our community be more understood!

[@catskullxwx8157]

Hello, hi! I'm a level 2 autistic person, and I wanted to thank you so much for this video!! I feel like our level is not as represented as level 1 or 3. My needs are along the lines of not being able to do basic tasks alone or at all. For example, I cannot leave the house by myself, I can't drive or cook or clean. I need my parents or partner to act as a caretaker for me. I have lots of trouble with social norms, with communicating in a neurotypical fashion (and just generally with masking), and finding the right words to express myself. Something I think a lot of us will relate to is even though we are level 2, we feel out of place in the autistic community!! I've had some negative experience with being too much for level 1 people, and too little for level 3!! It's also a personal judgement I place on myself. Anyway, this was nice to see some representation and I realated to lots of the points. Although I differ in some areas, we're all different and deserving of love and support!!! ❤❤❤

[@hollyoddly]

Thank you so much for this! And I know how you feel. Sometimes I feel way too much or even too awkward for some level 1 people. It can make "finding your people" hard to do! Especially when I don't see a lot of level 2 people out there.

[@sparrow8072]

This explanation confirms what I have suspected for a while, that I have substantially higher support needs than I thought. I know very well the feeling that I need to die before my caregivers (my parents) because I can’t survive without their help, even in my 30s. 😢 I have an interesting spiky profile as well-I can do kimono dressing at a professional level and have a teaching license in it-but I struggle with things like driving and my sister has even taken away my yogurt/spoon because I was “stirring wrong”

[@hollyoddly]

It sometimes feels like just as much of a relief to understand our support needs as it is to know we have autism! That is the coolest special interest!!! Do you have dyspraxia, as well? I have a lot of fine motor skill issues because of my dyspraxia, so I hold my pencil "strangely," have trouble with utensils, etc. I am constantly dropping things, cords, thread, and other things like that get hopelessly tangled in my hands. It is the worst!

[@samuelferrardz]

This video is truly a watershed moment for the autistic community. Holly, you've elevated the conversation to a whole new level by embracing and explaining the importance of autism levels with such clarity and depth. As a Level 1 autistic person, your insights have helped me understand and appreciate the experiences of Level 2 and Level 3 autistics more profoundly. Your approach is nuanced, intentional, and incredibly thoughtful. It's like you've bridged a gap that many of us didn't even realize existed until now. The way you've articulated all the important points feels like a love letter to our community, bringing us together and fostering a deeper sense of understanding and belonging. I feel so seen and heard after watching your video. This is a perfect example of how technology and voices like yours are shaping our collective social identity and strengthening our community. Thank you for your honest, authentic, and insightful work. This video will stand out in the community for a very long time, and I believe it will be a catalyst for many important conversations and realizations. No pressure for future content-just know that what you've created here is truly impactful. Thank you so much for this amazing contribution!

[@hollyoddly]

Thank you so much for your kind words! My spouse is level 1, so I have a deep love for the level 1 people around me, while also understanding that other levels need to find each other and want to be a part of this global community. I have so much respect and passion for this community as a whole, and I'm so happy that shined through.

[@AHappy]

This randomly popped up on my recommended but realizing now I might actually have more higher level support needs than I thought. I agree that your circumstantial background plays a huge role in how it can go undiagnosed for so long. I’m realizing how growing up in nyc has really had a huge role in being able to mask for so long.

[@hollyoddly]

I didn't think about NYC, but I can totally see how that could help someone mask! I've only been twice, but I remember seeing so many people with headphones on. It was completely normal. And people who walk or take the train, so no one would know if someone had a fear of driving. I've heard the idea that people there are rude, but I think they are pretty neutral. But I think that would also help to not have to pretend to make small talk or be bubbly. That's so interesting!

[@josephmartin1540]

Thank you. This has been the best - maybe only - description of the potential level differences I’ve seen. I don’t get it, yet, but this helps. I could SO use a caregiver and have been close to on the streets often over the years. I do have “friends,” who are N. T.s who check on me. They don’t understand and offer Typical solutions or act like I have mental illness. But at least they check occasionally if they see obvious meltdowns… ‘Tis quite better than nothing!

[@hollyoddly]

It can be so tough when even our supports don't understand us!

[@atsunome]

17:59 Lv 2 person here. I don’t think those specific things, but rather, something more akin to “I know my parents are going to live to like 110 years old because I don’t know what I would do if they didn’t”. Like, I’m aware that it’s unrealistic, but my brain doesn’t want to think about the possibility of no longer having those crucial supports.

[@hollyoddly]

I can completely understand that! It's not fun to think about, and we don't want anything to happen to our loved ones or have the double layer of losing our supports! 😥

[@sketchpup5718]

as a level one autistic person (with adhd) - your mention about coming off as disingenuous is something I've actually been thinking about on and off lately!! it's super frustrating because I know that I'm not disingenuine, I just have trouble with attention and communication so I come off as uninterested or rude. in reality, a lot of things are going through my head and I fail to communicate all of what I'm feeling because my brain is acting faster than my mouth or I assume the other person can contextualise what I'm saying - but that's impossible.

[@hollyoddly]

I really feel that! I also have adhd, and I am very "guilty" of assuming what people can contextualize. Or I overexplain and are therefore even more confusing.

[@vanessaprestoncreative]

This is really helpful, for both my neurodivergent self (assessment starts next week, at age 49), and my Autistic family and friends. Thankyou so much for sharing!

[@hollyoddly]

Congrats on getting an assessment! I know it's a long, nerve-wracking, and expensive process!

[@PlantingDiversity]

As a fellow level 2 AuDHDer, the plan B idea was super helpful thank you. So glad I found your channel 😊

[@hollyoddly]

Yay! I'm glad it helps because I get so distressed when plans change, and I can't foresee what will/should happen next!

[@joethecounselor]

Hello! ADHD therapist who works with many autistic people (and wondering increasingly about myself) here. Thanks so much for bringing this visibility! Your video helps us understand that even Level 2 people can be neurotypical passing, and quite intelligent (as even Level 3 people can). Level 2 is a huge band of the spectrum that people miss. I think people on Level 2 can often be slotted in either 1 or 3, depending which end of that part of the spectrum you're on.

[@hollyoddly]

I agree! Sometimes we are very adjacent to level 1 and 3, and so we go a bit unnoticed. Thank you so much for watching! Welcome to the autistic community! Don't stop wondering!

[@jennayoung9811]

Thank you for making this video!! Level 1 autistic here, I've always thought that we need more people from levels 2 and 3 to share their experiences. I work in special ed and I've been wanting to help the autistic kids in the class in the way THEY need to be helped, but their experience is different enough from mine that I don't even know where to start and the personal experiences of those whose experience IS similar to theirs are few and far between. If I was a content creator I would absolutely have you on, maybe one day when I achieve that dream lol

[@hollyoddly]

Thank you so much!! I was very nervous because I don't want to speak for the entire level 2 community. I was so happy to see many level 2 people commenting and putting their thoughts and unique feelings out here! I think it's so needed that you are autistic and work in special ed! You have an insight that I bet many of your peers don't have, and the fact that you are so curious and wanting to learn even more shows that you are great at what you do! Thank you!

[@autisticjenny]

Thank you for this video. I want to understand. I had certain sterotypes about it a while ago, but I'm happy to learn about this wide spectrum we share Holly!We need some Content Creators like you!

[@hollyoddly]

Thank you so much, Jenny! I'm glad to be a part of this community with you!

[@Lousidity]

Thank you for making this video. Don't ever worry about what you make not being perfect; It reaches people when they need it, and that changes everything.

[@AwedByOdd]

Happy I finally find a youtuber who is higher support needs. I am diagnosed lvl one this year. First diagnosed in the 90s with ADHD and then lots of other things in between. And trans man. The levels are so confusing to me. But I don't care too much as long as I can get the help that makes sense for me. I get disability income. I have never really been able to work. Right now I have people come 2x a week to help with stuff like to make sure I shower, have on clean clothes, brush teeth, food and drinks and stuff like that. And have someone working with me to get the more supports. Since I can't drive or use public transportation and have trouble still like I can't balance good enough for a bike and I get confused a lot with crossing the street what cars are going to do. Had to have a LOT of help all through school and spent 6 years of high school that finished only 3 years worth of it and still only have grade 11 out of 12. I have not good sensory situation around food all my life. Have needed medical help several times (not always getting it because I don't know how to understand when I need the help or what to do). And eventually it got very bad where they sent me to hospital for several weeks and the psychiatrist there and other staff was like... is he autistic?? and so then sent for assessment and finally got that this year (wait list of a couple years). I also have alexythymia and so can't always tell when I am stressed or anxious or feeling sick or why it's happening or what is happening. But then just... bam suddenly I have a tantrum (meltdown) because my mom calls for dinner. Made NO sense to me and so ashamed about it but no, it's because I was doing something and suddenly have to do something else. ANd the noise of it... But now that I have SOME language to know how to describe some things, I now have clinicians who understand a little more and suggesting possibly a group home or something with a lot more support at least. So we shall see. Spikey profile is TRUE. In my IQ testing I had done like 10 years ago I had several scores in the single percentiles (even one or two that were 1st percentile) and then a few over 90 percentile and all over in between. I might have trouble to cross the street but I am good at certain art things. Not amazing, but more than average at least. Especially where I can be very detailed. And can take my time doing things. Right now it's been designing and then sewing plushies!! My main diagnosis now is autism level 1. I also have mild ADHD, the ARFID of course, and I have OCD but it's doing much better with medication. So the main thing is the autism. And autism diagnosed by a high up specialist less than a year ago. So I don't quite understand the levels still but it doesn't matter too much as long as I can get supports that make sense in my case.

[@hollyoddly]

So much of what you said makes me feel not alone, so thank you for that! It is really interesting that you are level 1, but I'm glad you are getting the support you need, no matter the label. I feel like even doctor's don't understand the levels all the time. What you said about driving, riding a bike, and crossing the street is very true! My dyspraxia keeps me from being coordinated, and anything where I can't anticipate with the other person is going to do (like people driving past me when I want to cross the street) makes me incredibly anxious. I have to have someone show me more than once how to get somewhere until I feel like I understand, and only for short distances. I used to drive more, so I don't know how I lost that skill so much over time. If the conditions aren't the same every day I have a meltdown. I make myself shower every other day, but I don't always stick to it. I have the most trouble brushing my teeth and have not visited a dentist in years because of my fears around going. I meltdowns were called tantrums, too. If my husband couldn't hear me when I yelled for him, I would start screaming and throwing things. I broke a bottle of white paint on the wall once on accident, and it got paint all over the floor that was impossible to get completely out. I'm adopted, but my biological parents both did not graduate high school. My adoptive parents helped me through school a lot, and I could not have done it without them.

[@garywalker9207]

Hi holly, Thank you for this. I’m a new subscriber, glad I found you & this community. I am diagnosed ASD 1 with co-occurring ADHD. As a marginalized community member (black) HIGH MASKING Gen Xer, I was not diagnosed until age 54. The CAMOUFLAGE WAS UNCOVERED during a REALLY BAD BIMS episode where I lost my lifelong ability to mask/ mimick/ pretend/ assimilate with neurotypical surroundings at work. Although my clinical awareness came way late, I feel so validated and relieved to know there are MANY of us. For years I felt like I was alone on the planet in my otherness/ tendencies/ challenges/ uniqueness. Now I’m a ND advocate to an annoying extent plus perpetual eye toward self help; self advocacy. I’ve never KNOWINGLY met/ heard a ASD2 person until I saw your post. My diagnosis has been helpful in helping me make sense of life to date which has been an ongoing colage of neurodivergence hiding in plain sight/ privately normalized over many years to my detriment. Im now learning to live with low to no unmask no longer afraid to be outloud who/ what I tried to hide since Childhood (my autistic self) 😎.

[@hollyoddly]

Thank you so much for commenting! We need to hear more from the Black ASD community and other marginalized groups. I feel like we need more unique voices in order to be a whole community. If every autistic person could find other autistic people to look at and feel fully understood, that would be the life goal. I love that you say you advocate to any annoying extent! I don't know if you also feel like since learning you are autistic that it has become it's own special interest, but I know a lot of us feel like it is!

[@zinzimashibini2949]

I love this! I 'm level 1. I agree about the infographics only including the traits to categorize us and not giving examples of how to support us. I got diagnosed in my early 40's and have lived independently my entire adult life, work full time, etc. Im still trying to figure out my own support needs in many ways. I didn't even know I had hypersensitive hearing until a couple years ago.

[@hollyoddly]

I think it never hurts to think on what support you might need and to normalize reevaluating it as life circumstances change! We owe it to ourselves to think on and be able to prioritize our needs when it's possible.

[@katieyoung7271]

I wasn’t given a level, as the psychologist who diagnosed me said the he had never seen a person in his long career who didn’t exhibit traits related to all 3 levels. Especially if that person had incurred significant childhood trauma.

[@hollyoddly]

Interesting!

[@leam1425]

Your Psychologist sounds smart. It's all so individual and many of us have experienced burn out, which made me feel like level 2-3 for a long time.

[@MaeveGoldenSword]

Thank you so much for making this video! I'm autistic with level one support needs and social worker. It is so important for people to see that autism can look so different from person to person and within support need levels. I am really good at my job working as a therapist (even though my client's tell me I'm a bit strange or quirky), but I need help with going to stores and cooking and I have a hard time with change. I work from home and had to change out the laptop I use for work yesterday. It was extremely difficulty and I needed help from my spouse because I totally shut down. The three rigid categories are not super descriptive of what I am like or what my needs are. Also I love hearing about various people's experiences and perspectives. Visibility is so important!

[@hollyoddly]

I love that there is so much conversation going on in the comments about what we struggle with and what our needs are! No, the level system is not perfect by any means, so I think it's up to us to talk about what supports can look like, and I feel grateful that I can talk about my need substantial support without shame.

[@neonghostarmory]

unfortunately even though i was just diagnosed the psychiatrist didn't give me a support level designation he instead just said he would have actually wanted to diagnose me with aspergers and complained about the consolidation of ASD. this video helps me understand the concepts of support levels. thank you!

[@hollyoddly]

I would definitely give yourself permission to explore your own support needs and reevaluate them as circumstances change!

[@fallenpoet6051]

I love this video! I realized I was autistic (level 1) a year and a half ago, and I’m trying to learn more about the experiences of other autistic people. I so appreciate you sharing your perspective as an autistic person with level 2 support needs! Also, I am incredibly impressed at your Taylor Swift listening capabilities! 😂😂 Reaching the top 1% of listeners of none other than TAYLOR SWIFT with only one album and in the span of only five months is truly an accomplishment. Your positivity and inclusiveness are heartwarming and I hope you do get more opportunities to spread awareness for autistic folks and level 2 folks in particular!

[@MistySie]

I was diagnosed level 1 but I have semi regular meltdowns and shutdowns. I struggle with daily living tasks such as cooking, cleaning, and hygiene. I wouldn't say I just require support. I won't even go into new places by myself because it's too unpredictable. If it weren't for my family I probably just wouldn't get out at all.

[@hollyoddly]

Yeah, that's definitely why I wanted to make this video. I think many people are diagnosed with level one for whatever reason that might have way bigger struggles. I almost in some ways wanted to give people "permission" to rethink what supports they truly need, not just what people say they need or say they don't need. If that makes any sense!

[@ddsbread5673]

You are so good at explaining all this! I could never express my experience so clearly and eloquently. I'm level 1 and the wall you describe makes absolute sense! I experience it every day. And thank you for making this video, it's so important! I've really been wanting to learn more about the experience of autistic people with more support needs, this is fantastic!

[@hollyoddly]

I'm so glad in not being the only person who experiences "the wall!" I wish none of us experienced it, but thank you for making me fee less alone.

[@auntycori]

Such great awareness, especially with outliers! I'm level 1 but feel like I should be 1.5 haha! I'm also guilty of walking away mid-convo. My provider gave me a letter for work accommodations regarding sensory stuff, needing clearer and succinct instructions, head's up on changes, and things like that. But we are each unique in our expression of how our brains are wired. The supports are unique to the person and can be, as you said, the difference between thriving or living unhoused. An important topic that needs more open discussion

[@hollyoddly]

Thank you! It's so true! Three levels for this many autistic people means there is a lot of nuance and variation within levels that goes un-talked about.

[@adelinereacts]

I appreciate this video a lot. I have level 1 autism, and I recently started a job working with higher support needs disabilities. I’m realizing I didn’t have a lot of exposure to the breadth of IDD before this, and it’s been an adjustment getting comfortable working with the wide variety of support needs that I often am able to manage better or don’t understand at all. Thank you for your education/ advocacy!

[@momo-e9s3r]

such an important video. thank you for making this excellent video!

[@hollyoddly]

Thank you so much!

[@chuzzbot]

Thanks for explaining all this Holly, this all so helpful.

[@hollyoddly]

Thanks for commenting!

[@A-Pinecone]

I was diagnosed as level 1, but I do feel that I'm closer to level 2. Especially when you brought up the "something different" thing. It's painful, but that's often how I'm seen. Except it's defaulted to weird, or even a creep. And I didn't realize how much support I require until I watched this. I'm actually a breath away from being homeless, and if it weren't for family, I would be. Without my mom, I honestly don't know how I'd live, and that frightens me. Thank you for this video, it was pretty eye opening. I love how you described things, it definitely helped my fellow autistic brain understand!

[@hollyoddly]

I'm glad it helped! I was definitely hoping that this conversation might help more people evaluate what they actually need, not just what they were assigned. Thank you for making me feel less alone!

[@A-Pinecone]

@hollyoddly thank YOU for helping me and many others feel less alone, too! 😊

[@misspat7555]

Always hear about “level 1” and “level 3” support needs, generally in the context of “well, those level 1 adults just don’t understand how hard it is to be the parents of a level 3 adult, level 3 autistics are basically a whole other category of people!”, and no one ever mentions level 2, where I seem to fall. I think there should be two levels of disability in general, applicable to all disabilities, not just autism; inability to perform ADL’s adequately to maintain health, which implies a need for 24/7 support (if you can’t use the bathroom safely on your own, or can’t microwave leftovers for a couple minutes and feed them to yourself fairly successfully, you will be in deep trouble in a hurry without help), or ability to adequately perform ADL’s, but not IADL’s (so maybe trouble making phone calls, or going grocery shopping, or remembering to pay the electric bill). The second level implies that some amount of daytime support that can even skip a day or two should be adequate to maintain health and functioning. Maybe there would be a third category for people who are fine at home and can maintain a household but need extra help in work, school, medical facilities, and other places where the environment isn’t well adapted to their needs? 🤔

[@kaiscote]

Thank you for this! It really is so complex and multifaceted, isn’t it? Especially because co-occurring conditions are very common and can also influence support needs. I was diagnosed level 1 as a teenager, “just barely” meeting criteria according to my psychologist. I often feel like I don’t relate to other level 1s but that I’m too independent to be a level 2. At almost 24, I cannot drive, live independently, or reliably feed myself. I have a grand total of 2 friends because though I’d say I mask reasonably well, the anxiety and effort it takes is not worth talking to people at all unless absolutely necessary. But I go to university and with accommodations, I do well. As long as I’m in a controlled environment (mostly stay at home), I don’t have frequent meltdowns. It feels like when I talk to other level 1s my age (online of course lol), I’m far behind. But around level 2s…I’m an imposter. There’s no way, I function “too well.” Sometimes I wish there was a level 1.5 😅

[@hollyoddly]

You are not alone in wishing there was a 1.5! I have read more than one comment like that! I relate so much to what you said, so you are certainly not an imposter! I agree that our needs fluctuate and people can change levels and change back again. I think that's why it's important to have the conversations and know that support needs are simply support needs. They don't need to have a grander meaning than that. And what we need today might not be what we need next month or in a year. ❤

[@kaiscote]

@@hollyoddlyThank you for this Holly ❤️

[@jess6682]

thank you for this video :) i was diagnosed audhd at 12 and was pretty much low support needs through school and university until i started working full time and now i’m finding out that my support needs are a lot higher when i lack control in such a huge part of my life. losing skills and independence is something that’s really hard on me right now when i’ve worked so hard to be more independent over the years.

[@hollyoddly]

Support need can really fluctuate, and I know it can be difficult not to be hard on yourself, but loss of skills is really a "normal" issue for the autistic community. You are right on target for an autistic person, and you are doing what you can!

[@ElNJ-m7f]

Thank you for this video, appreciate it very much. I’m diagnosed as level 1 and my support needs described by my parents previously is that I’m an young adult but needs support like a child, at the same time I’m very intelligent and also has a rich vocabulary according to other people. I mask well socially. I need someone to cook, clean, remind me of basic hygiene, I’ve steps on a list for the hygiene, i need help in meetings most often, i almost always transport myself with someone else like walking or they drive and come with me, i get communication help when I’m interacting with hospital or other things like that, i get help to plan my week and probably need help to follow it as well but right now that support isn’t accessible for me, i need emotional support often, I need help to maintain friendships, i need help to do important tasks, i dont shop myself, i eat alone, i get special food, we accommodate for me when doing something together, i need help with my dogs care to feed her, i dont remember to shower if i dont get reminded often, i get a lot of accommodations in my studies and so much more. I am going to more to a supported home for disabled people in a while. I dont know if this is a common experience for level 1 autistics or not. Please let me know, I love hearing other people’s experiences. Thanks again for this informative video!

[@ElNJ-m7f]

also i think i would die without support from other people, or at least be homeless and not be able to cope or take care of myself. I also burnout easily, I burnt out for the first time at a young age.

[@hollyoddly]

I think that's really interesting that you were diagnosed level 1. Since I'm not level 1 and I'm not a doctor, I can't say for sure, but your experience is similar to me and a lot of level 2 people I've talked to. At the end of the day, it's all about getting support. And there is no shame in letting people know what support you need. It sounds like you are getting it where you can, which is wonderful. Thank you so much for commenting!

[@ElNJ-m7f]

That’s interesting that my experience is so similar to some level 2 autistics. But I think it doesn’t matter what the label says for me because as you say I get the support I need and soon I’ll get even more so I hopefully can even thrive! I don’t know maybe I’m level 2, but I also got diagnosed at 14 or 15 can’t remember exactly and have masked a lot since a young age. I had my ed to cope and also my parents has always helped me a lot. They have accommodated for me since I was a baby without knowing I was autistic. But not enough support until I got diagnosed. They were a bit surprised I guess that I’m autistic but their picture of autism was the stereotype which I don’t fit. Thank you too. Hope you are doing okay!

[@SpinyVine]

thank you for sharing your experience. this was a wonderful video.

[@hollyoddly]

Thank you so much!!

[@soyis_boyis]

Thanks so much for this video. I couldn't find anything on Level 2 autism after I was diagnosed. I've met and heard stories from people who are Level 1 that made me feel like my skill profile didn't make sense. Sometimes I was as competent (maybe more) than them in certain skills, but really had strong difficulties that they didnt even seen to have, or were way less noticeable for them. Because i have a spikey profile, I really dont think i could live alone successfully for an extended period of time. I have pretty bad auditory processing so i need people to repeat themselves really often when im speaking to them. I have days where my sensory issues are so bad that going outside is just too much. My emotional state is really almost entirely based around the amount i percieve my schedule and life in general as "stable". I've straight up forgotten to respond to people on bad days. I guess just wanted to share how it can look to have a spikey skill profile in general, but also spikey skills day to day since both characterize autism and support needs.

[@hollyoddly]

I feel so much of what you said! I know some people hate talking about levels, but there is a whole part of the community that isn't feeling fully seen or connecting to one another. It's very hard when, one one hand, I feel like I've found my people, but on another hand there is something about me that doesn't fully fit. Comments like this make me feel like I do fully fit with other autistic people, so thank you!

[@marieugorek5917]

Part of why it's complicated is because it's not so much how MUCH support we need, but whether we need the sort of support that is AVAILABLE. I really wish we could just toss out the whole level system, because it isn't remotely helpful... case in point, that infographic offered around 5 minutes in. Depending on the day, I am apparently different levels. Definitely went an entire morning without speaking aloud a couple weeks ago. Absolutely rock and spin (used sit'n'spin and swings for this as a child, so it didn't attract attention). I think the only thing on here I don't do is drift off in the middle of a conversation; I am far more likely to make a dramatic exit. the psychologist who confirmed my diagnosis said that if I were level 2 I would have been diagnosed as a child, but I have often wondered if I WOULD be diagnosed at level 2 if I were 12 years old today having the problems I was having at school (mostly socially and behaviorally, but often with academic triggers) when I was 12 back in the 1980s. then again, I think it makes a difference that I have ADHD. I resonate with the FEELING of panic when faced with change, but I also learned early on that I could give autism its blankie and let it crawl into bed in my brain, then pull ADHD out of the closet where I'd put it to keep it out of trouble, point it at the change, and say, "Look! An adventure!" If I didn't have that option, I would probably have exhibited far more obvious signs of distress in response to ALL changes instead of just changes in specific circumstances. Ummm... when other level one autistics say their autism goes unnoticed, I had always assumed they meant that people noticed SOMETHING, but didn't put it in the autism box. They definitely had a tendency to respond to me differently than they would to others. Now that most of the people in my life have the AuDHD labels, they know that any warning signals of "something odd" that they are picking up from me is probably that and they can just ask clarifying questions and I will clear it up. Oh, yeah. I would totally be homeless right now if I hadn't inherited a chunk of money from my mother. And when she passed away, I did start to worry about what would happen when Dave dies, because I struggled so much at all adult problem solving tasks. I have a college degree because I went to a small private school; if I'd had to go to a state university I would never have finished. I got married right out of college, so have always relied on my husband to do things like get utilities set up and shop for electronics and such. 46 years old. Just last week set the goal of getting a drivers' license in the next 7 months. This will be my 4th attempt, but I might finally have the support I need to manage it. Oh, and I am in speech therapy because I literally struggle to phrase questions AS questions. I can turn on the faucet and shower, but it took a year for me to learn how to flip the thing specific to my toilet that needs to be flipped so it doesn't run constantly. I think my husband showed me how like half a dozen times. I worked with an occupational therapist to learn how to pump gas... and I still have never done it completely without help, I just have stopped panicking if I need help doing it. struggled with socialization until diagnosis, because yeah... I was masking 24/7, but not effectively. Everyone knew something was off. And while I had no problem reading as a child or youth, I have spent the past two years basically unable to read non-fiction, and I haven't read fiction in, oh, probably 2 years. It was my safe space for decades, but now that I have been diagnosed I am able to actually work on my cPTSD (from unmet developmental needs due to unrecognized neurodivergence) I can't focus to read more than a few pages at a time, and when I do I often don't absorb the information. I am really not convinced that the support levels are at all useful. I think it's different KINDS of support that are needed, not different amounts. And just enough of us at level 1 have historically been fortunate enough to be able to get those supports through family and community organizations (like churches) that what we need isn't available through the systems that offer supports to level 3 autistics. I suspect level 2 autistics have a mix of the two... but then again, once I know to ask for supports, I am discovering I can get SOME of them through the systemic options; I just have to find the magic words and teach the support workers what I need. So maybe it's also just that we haven't been getting diagnosed long enough for the support systems we need to be built and advertized. A lot to think about here.

[@hollyoddly]

I totally get what you are saying, and it sounds like support levels are not useful for you. They are most certainly, as you said flawed, as is the health system trying to diagnose and support us. But for me, levels are useful, because they do help me at least a little bit more than I could on my own, understand and convey my needs. I think because we are a spectrum, as someone else said, then of course we don't all have the same levels of support needed. I do find that I want to relate to more people with substantial support needs like me, and putting out this video has helped me reach some of those people and feel seen/connected.

[@hannahbaker2856]

My husband hasn't gone through the full diagnostic process, but from psychologist's assessment has been pegged around a level 1.5. I'm what he calls "spectrum-adjacent" so somewhere between 0.75 and 1. He also has inattentive-type ADHD. We found out about the autism aspect less than a year ago, and that insight has transformed our marriage, work approach, and parenting.

[@hollyoddly]

So many people have mentioned being 1.5! I love that because the more people that can connect to an experience the better our community will be! Knowing, whether through self-identification or formal diagnosis, can be such a relief. And learning how I work has really transformed my family, too. I love that you all are going through that, as well!

[@melissawood4317]

I will be 49 in two days and have level 1 support needs, but I worry about the death-thing also. My husband is an entrepreneur who owns a business with 15 employees. We have 4 kids ages 19-8-the youngest is also autistic. He has been working with a succession planner to figure out what would happen if he were to die. People do this who do not have autistic spouses, but I had such anxiety around this. In my defense, my brother died at 39 and left a wife and son. I’m sure this contributes to the urgency. Anyway, I have so much guilt around my husband’s support of me. He works all day and then still comes home and makes dinner. I have a housekeeper who comes once a week. My husband also coordinates all maintenance for the house. I get very nervous around people coming over to do landscaping or delivery or maintenance. In crowds, he leads me around like a puppy. I don’t like to drive anywhere over 30 minutes. Without him, I don’t think I could be social anymore! I think I functioned well(ish) when my life was “smaller.” When I was single and had no children and lived in an apartment-I managed by myself-I was alone a lot and could recharge. Now things feel too complex and I am older and it’s hard. I get overwhelmed and need to rest. I don’t know if this adds to the conversation, but it is my experience.

[@hollyoddly]

Thank you so much for sharing! I think support needs fluctuate over time and different situations, and that's okay! I really feel you around the guilt I have about my husband and how much he supports me. But we have things to offer! That's why they love us.

[@AxeyaxeAxel]

Despite the death subject maybe being uncomfortable and whatnot, it’s also comforting to hear something actually relatable to my experience (said the exact thing recently of how my mom has to go before me and how it’s just not possible in my brain that I’m by myself-). It’s rough sometimes obviously, but I feel more alone sometimes when most of the talk about autism doesn’t reflect ‘my kind of autism’ lol and my support needs if that makes any sense- Anyways, loved the video!!

[@hollyoddly]

That makes perfect sense! Well, now I see you and you see me, so thank you!

[@melodym4354]

I'm presumably level 1 (diagnosed as "mildly autistic"). I really enjoyed hearing about our similarities and differences, and how you share a lot of my traits but it's just "kicked up a notch" so to speak. I hope to hear more from you in the future. I see you, Level 2!

[@hollyoddly]

Thank you so much!!!

[@dylnpickl846]

I am undiagnosed but now believe I could have level 2 support needs. There are a lot of reasons I went undiagnosed when I was younger, and then as I was getting assessed in my early 20s for things like anxiety, depression, OCD, and BPD, my body gave out. I was bedbound/housebound from age 25 to 30 and am still limited in how much I can do at 33. But as I gain physical wellness and capacity, I notice my autism becoming more of a barrier. And if I am aiming to reduce my stress load as is recommended for my conditions, I find my autism becomes even more limiting. I can "push through" a surprising amount of distress because my difficult childhood required me to and gave me the mechanisms to do so. But any amount of doing so immediately trashes my mental health and leads to frequent meltdowns. Lately I use my physically disabling conditions as a way of accessing accommodations I feel I need for my autistic traits. It's helped me a lot and validated me in feeling as though my support needs are higher than I initially thought.

[@hollyoddly]

Self-identification is really important, as there are a lot of frustrating barriers sometimes to getting diagnosed. It's tough that you've had to use your physical conditions to get autistic accommodations, but also genius that you've been able to work with what has been formally diagnosed to get the help you need!

[@joycecz]

I listened to your video and feel more free to say that I don't always know what my support needs are - I have lived by myself for 20 years. I am 70 yr. young! Now I have Section 8 housing because of my age. I never really received a level. I assumed I was level 1 and the labels are over-lapping sometimes. Your voice is very gentle and soothing for me. Thank you!

[@hollyoddly]

I think support needs can change over the years for certain people, and that's totally okay! What we need is always an interesting thing to think about!

[@Sonicfan-cc1te]

I’m between Level 1 and Level 2 autism and I have pretty much every trait for Level 2 autism mentioned in the picture. I’m 19 years old and I’m somewhat independent, I can be at home by myself, I can brush my teeth, shower, stay home by myself, use transit, book taxis and cook some basic things. I can’t really manage my finances, and I have pretty intense interests and when things change I can get really upset. I also got accommodations in school like scribes and readers. I think it’s also pretty clear a lot of the time that I’m different in some way if not autistic. I’ve also had people say that they would’ve never guessed that I’m autistic.

[@hollyoddly]

I see a lot of people in the comments here describe themself as level 1.5! I really love that because I think that means there are a lot of people out there who could really connect to each other and understand each other if given the chance to see each other.

[@m_florescence]

This was so helpful and validating. Exactly the kind of representation that is so needed in the online space.

[@hollyoddly]

Thank you so much!

[@rainbowstarks]

So glad im not the only one confused by these infographics! Thank you so much for sharing all of this, you're right that level 2 autism is difficult to conceptualise and its very helpful and interesting to hear your experience ❤ I'm gradually realising that I have more support needs than I thought and it's confronting but also liberating. I've hidden myself away out of shame and fear and misinterpretation of life instructions and asking for help is helping me to connect with others more. I love that you talked about what each support levels need from each other, such a beautiful video and appreciate you making it so much! Also LMAO YOU BEAT OUT SWIFTIES JUST LISTENING TO FOLKLORE HELP FJDKDJJF THATS AMAZING /pos ✨

[@hollyoddly]

Yes! There should be no shame or embarrassment over articulating what we need, however we can do it! Haha! I know I'm an embarrassment to the real Swifties out there who take the time to listen to all of her albums and buy her merch, etc, but there was something hilarious about being in the 1 percent!

[@FinnySpam]

also jsyk i spent like. an hour telling my friends online how seen and heard i felt by this video and the comments.i appreciate you all, especially holly for making this and posting it. and then i got excited about chickens ans pent like 3 hrs talking a bout that. theyr'e my special interest arounda ge 10 to 13 that still gives me great joy even if i dont actively research them anymore.

[@hollyoddly]

Chickens!!! That's so cool! I get very scared around animals sometimes because their movements are so unpredictable. I envy people that are good with animals.

[@abstractness]

this video was super helpful to me! i’m diagnosed but not with a level and i feel like from looking at my own autistic traits i might have higher support needs than i thought, that i might be in the middle of level 1 and level 2. it’s about time autism support needs and higher support needs autism get discussed more in the autistic community.

[@hollyoddly]

I see so many people who say they are 1.5! I really do think there is a whole bunch of autistic people who would connect if they were able to see each other.

[@sadlemoncake]

hello from a fellow level 2 in GA! so glad i found your channel, this video was really informative and relatable. :)

[@PIPFinalFilmProject]

Holly, this video was so validating I am actually crying in the club right now (metaphorically 😬). Dxed Lvl 1, but I am constantly questioning whether I may actually be Lvl 2. I come from a family of undiagnosed autists and got labeled the "social" one because I'm hyperverbal if I am not in meltdown/shutdown. I always got yelled at for wandering away during conversations because my dad was hard of hearing, I never looked both ways before I crossed the street (to the point my dad forcibly held my hand until I was a teenager), and I was constantly told to stop talking to strangers because I had no awareness for my own safety. To this day, I still don't, and I rely on the support of my loved ones to tell me if someone is actually bullying me instead of truly being my friend. That's not even touching upon the daily living stuff my mother (and college ROOMMATES, writing that out kinda reminds me, bless them for being such good friends) had/have to do for me like cooking, cleaning, etc. I do think it is possible to be level 2 and go undxed for all the reasons you're saying, as well as the fact that they would not know themselves to be "weird" if it runs in their family and this behavior is all they know, when they already have a hard time understanding social context. I SINCERELY thank you for this video- I am sick to death of the lack of L2 rep I see in social media spaces and it is so refreshing and exciting to hear about your perspective. I know this channel is still smaller right now, but it's going to grow. The information your sharing is a rarity, and invaluable for the community. Looking forward to hearing more about your personal experience as an autist, and seeing much more spectacular interior design. 💜

[@hollyoddly]

Thank you so much for responding! I was hoping this video would normalize rethinking what supports we all need as they fluctuate! I think there is a lot of fear for people who weren't formally diagnosed as level 2 to admit they need more support and therefore go without the help they need or feel guilty for asking for more help or accommodations.

[@StorytimewithDeadline]

Diagnosed as Autism Level 2 amongst a lot of other diagnoses. When mentioned the fact that you feel you can't out live your partner. I know that feeling very well!

[@hollyoddly]

It's a scary thought, right?!

[@noctembra]

~20.00 about the "invisible wall" with barriers around simple tasks: I know exactly what you mean (in my own way, I suppose) with not being able to do certain things like that. The task just feels "wrong" or "impossible", even though I'm aware the whole time that it "shouldn't" be so hard. It gets frustrating when people just see how easy it is for them to do, but it's too esoteric for me to explain my struggle. Also, i think of the word "disingenuous" nearly every time I socialize... even with the people closest to me. I think it definitely has to do with masking, and and I'm trying to learn to "unmask" but it has been very difficult when it has been so ingrained in my over decades. Thank you for this in-depth and educational video! I'm trying to hear from other autistic people in particular in my psychoeducation.

[@hollyoddly]

Thank you so much! I'm glad someone else related to the "invisible wall" thoughts, because I felt very alone in that!

[@beelake9436]

i've never seen anyone talk about how clear signs of asd in childhood can be easily dismissed if you have an extensive trauma history! i was only diagnosed as level 2 asd very recently, and i experienced the same thing. everyone around me could see there was something wrong my whole life, but they just thought i had ptsd and depression or something. lo and behold i don't have either and it was all just autism. very interesting to hear this from someone else. i always wonder if i had a 'normal' upbringing i may have been detected earlier.

[@hollyoddly]

Yes! I think about this often, too!

[@Amba_Gyuwity]

I was diagnosed in 1978 at the age of 8, with "Hyperactive Disorder", now known as ADHD, which was very unusual for a young girl in the 70’s and most likely wouldn’t have even happened if it hadn’t been for my 3rd grade teacher. My doctor wanted me to take Ritalin but my hippie, witchy mom refused and said she would find something natural. Two years later, and no success, my little brother was born and it was never discussed again. I went through my teens and most of my adult life in and out of mental facilities (mainly because my mother couldn’t deal with me so it was more a break for HER from me) I was misdiagnosed and went through horrible experiences with different medications that never worked (wonder why 🙄) and caused horrible side effects, some of which were irreversible. I willingly went to therapy (still do) but could never figure out what was wrong with me and why I never fit in, was bullied etc no matter HOW much I tried to fit in. Fast forward to 2016, when I was 46, and a friend of mine who had known me since I was 12, was himself late life diagnosed and said he thought I should get an assessment as well. To which I of course replied with "What?? Haha, that’s a boy thing" but the seed had been planted. In 2021 I started researching and saw a Ted Talk from a woman who was my age and late life diagnosed; her story was MY story exactly and I just sat there sobbing in relief because everything in my life fell into place in my mind and it all made sense. I was 52. I got my official diagnosis thinking friends and family would finally understand too only to have that hope dashed upon the rocks of "you’ll never fit in and be loved and accepted ”. It has been a long 3 years from that point but I’m happy-er than I was before thanks to my online autists and AuDHD’rs, not to mention that my 14 year old son was diagnosed at 3 with AuDHD and he is awesome. I always considered myself level 1, but after seeing this I realise, I was only a level 1 masking. I am level 2 for sure. I can relate to the one song, one album completely lol. 30 years later there are MANY one album artists in my repertoire of listening pleasure. I’m so glad I found your channel. I live in Juneau, Alaska and there is no support in my community unfortunately and we’re landlocked….🫤 Thank you for this video 💐 I look forward to binging everything your channel now lol, like I do with Orion Kelly 🌻🌻🌻

[@hollyoddly]

I live in a rural area, so I know what it's like to have little support around me! Also, autism is still stigmatized in the south, where I'm at. It's very frustrating. I'm so glad this helped! I think we should all normalize self-discover, especially around the supports we need. Also, I love Orion Kelly! He's a great creator!

[@nikkibishop8025]

These levels are a bit strange. Depending on moods and stress levels I feel like a 1.5 to 2.5. Maybe statements would make it easier ‘Questionnaires make me angry’ = ‘I need help filling out forms’. Just a thought from an exhausted autistic brain.

[@hollyoddly]

The levels are definitely not perfect, and I think it's normal to fluctuate needs based on circumstances and over time!

[@benadrylcabbagepatch2527]

Thanks for this. I was diagnosed with Asperger’s back in like 2007 or 8 when I was in maybe second grade. But looking at the levels recently I could never quite figure out if I’m a level 1 or 2. I’m pretty bad at masking because I’ve never really had to (grew up with two autistic siblings) and I tend to wear my thoughts and emotions on my sleeve, so when I’ve seen people describe level 2 autism I’ve identified with a lot of the stuff they’ve said about the ways they act. However, I’ve never really felt like I had high support needs because I can take care of myself, drive everywhere, live without help, cook, clean, etc. (unless I am going through some really rough shit or my ADHD gets out of control). It’s only in social contexts where I need extra support, like sometimes I will walk away during a conversation or cut people off without realizing it. I’m starting to think I am more of a level 1, but drifting kinda close to being a level 2, because while I can relate to some of the more minor stuff, most of the important stuff doesn’t really resonate with me (except for the part about not liking sudden change, sometimes I’ll get freaked out when my flow is interrupted lmao) This helped clear some stuff up.

[@hollyoddly]

I love that so many people are saying they are more like a 1.5! There is a whole group of people out there who need to find each other! We are a whole community, but it's still very cool when we can connect to people who really get all aspects of us!

[@pardalote]

I was late diagnosed as level 2 Autistic. I relate to so much of what you said. The music thing! I am more a classical music person. My piece is "Speigel in Speigel" by Arvo Pärt. I am also very naieve and just don't get things or realise things a lot. Driving has always been super hard. I got my license over 30 years ago, but it still hasn't become an "automated" activity. I have to think through all he processes and steps. Its really hard. My proprioception is poor and I think that is why I have no idea where the edge or front or back of the car is. I have to rely on the mirrors a lot. Parking and lane changing is seriously hard. I only just realised earlier this year that most people find driving pretty easy once the get used to it. That's helped my anxiety so much! I used to worry so much that trucks or other big vehicles would go over into my lane and hit me. I realise now, they actually know where the edge of the truck it!!! It only took me 30 years to work that out. I also hit the wall with a certain household task, but I don't want to share what it is. I know exactly what you are talking about though. ❤

[@hollyoddly]

Yes! Thank you for bringing up the proprioceptive issues! I have a lot of issues around that, and parking, backing up, etc is very hard and stressful for me.

[@Hellisarickroll]

Thank you for putting this out here. ❤

[@hollyoddly]

❤❤❤

[@crashfallgrow2665]

The shower barrier makes sense to me. It's a sudden sensory change . You have no idea what the water pressure or temperature will be. My strange thing is i can not call in my appointments. I find it nearly impossible to schedule appointments with doctors or call and order food. I panic inside thinking about it.

[@hollyoddly]

Yeah, so you get that but in a different way! There are just those things sometimes that we simply can't do. I wish we could just flip the "switch" in our heads on for that task!

[@jessicav2031]

Gosh, that's not strange at all. Making a call to someone you don't know is absolutely terrifying. Sometimes I just can't, other times I manage to trick myself and dial the number and hit 'call' so fast that I don't have time to react. I have been trying recently to figure out exactly why it is so bad. My current theory is that it is because it is unpredictable. I rehearse conversations, and with people I know, I know about what will happen so I am prepared.

[@AutoEngineerVideos]

@@jessicav2031 interesting observation about phone calls being unpredictable. Much of the time I don't like phone calls because I would have to transition from a task to talking on the phone, then back again. However, that isn't always necessary, but I still find it difficult to pick up the phone and make a call. I've never really known why. Usually, I'd rather sending an email or a text, but they can take ages to get the wording right.

[@Gaya-ch1ff]

I just found yr channel… it’s great and so useful. The more diversity of spectrum is shown the better! Yr video was very clear and a much better explanation than the one shown. 😊 Goes to indicate that autistic people expressing their lived experiences is crucial! I definitely feel like my chalenges change with circumstances and time … and are not all the same level anyway. Unless in burnout, when EVERYTHING is insurmountable. Much love to everyone!

[@hollyoddly]

Yes! Burnout makes functioning very hard, and I know it's normal for people to lose skills and change support levels during burnout, for sure!

[@MaryKDayPetrano]

Yeah, when I was a teen (age late-12 to 17) in North Salem, NY, I would play specific records over and over, but the reason I did it was to try to understand the speech of what they were saying because I had severe language impairments and could not understand what they were saying, and I had to memorize all of it so I could do echolalia to be able to speak. And, it was all records, not just one or two I had this problem with, but I played specific records over and over (like 200 times repeat per being in my room days) because I had to do one at a time to try to understand the words and speech they were saying. I couldn't do them all - there were too many,

[@hollyoddly]

That's so interesting! Thank you for sharing. I didn't think about that as a language barrier at all, but I have an obsession with memorizing lyrics. That gives me a lot to think about.

[@elleishell3183]

Thank you I needed to hear that, I hear it over and over but I still need to it’s that reinforcement and different perspectives that we as a community and as a society need

[@hollyoddly]

❤❤❤

[@imjustjules]

I’m so glad this was in my recommended! I subscribed. I’m always looking for more level 2 autistic ppl to connect with. I strongly feel I’m level 2. I’m a bit traumatized right now because I went through the re-evaluation process and the psychologist wasted my time. I could tell she didn’t know about or like the level system. She said she diagnoses without levels too. I just was so disappointed. She turned me away and refused to assess me, stating she’s never had someone ask for a level re-eval before… even tho I see it discussed on social media regularly. I sought formal diagnosis of my level (I’m already formally diagnosed with autism) because I wanted more support and didn’t know if I qualify for more with a higher level or if it would help me. Like you and others I’m terrified to lose my caretakers. My parents caretake for me. I’m in my 30s. I’m sick now and can’t work. I need so much help. I’ve thought about this for a long time. I have an entire blog post on why I think I am MSN. I went through every iADL category and described my support needs in depth. I wouldn’t be here without my parents keeping me alive. Thank you so much for respecting self identification of support needs and also noticing that not everyone gets formally diagnosed with a level. There’s a lot of discourse and infighting in our community around these topics and all that does is hurt each other and divide us even more. I’ve been terrified to just say I’m level 2 without adding “self suspecting” next to it, but I know I’m different. I’ve been in plenty of autistic communities. I used to be a therapist and go to provider meetups in the ND affirming specialty. I stand out, even amongst other autistic people. I’ve stood out this way lifelong. I’ve always been low masking. People like me at first but once they get to know me they usually decide they don’t anymore. I like me and that’s all that matters. This brings up a lot for me to take in all this info but thanks again for providing it. I wish I could come up with the words and prepare more autism content for folks. We really do need more voices in our community! You should contact autism dialogues, if you want to be interviewed. If they haven’t interviewed you already, they will. They’re a friend of mine :)

[@hollyoddly]

I'm so sorry that you had to go through that!! I don't know why some medical professionals don't understand that a huge part of their job is to advocate for our needs as a patient, client, etc. I hope that doesn't become a barrier to you getting more support. I know some people get nervous about levels, so they may say "I am an autistic person with more moderate support needs" or "more substantial support needs." But at the end of the day, if people can self identify as autistic (which I believe in, even though I'm formally diagnosed), then I'm not sure why people aren't allowed to say what their own support needs are. I have never heard of autism dialogues, but I just found their site, and I'm going to check our their interviews! That's so cool!

[@meganw6007]

(14:40) THANK YOU for accounting for not just those of us good with language, but those of us who weren’t ever given a support need at all. Mine doesn’t FORMALLY say one, but my peers in autistic support groups read over my diagnosis and they said that with how many “Severe” there were across multiple different tests, that they thought it was obvious that the doctor thought of me as maybe a Level 2 or even a Level 3 I’ll never know tho, since I hide so much the best I can, but regularly basically stay falling apart and not really functioning with some basic things most of the time. But with how Gaslighty the world is, I wouldn’t be surprised if ppl say “no you’re level 1, you don’t need support” (except I crumble and fall apart any time I don’t have lots of it)

[@hollyoddly]

You bring up an excellent point that, even if people are not given a level, there can definitely be things in our report that talk about how high those needs can be! No one should ever gaslight you for saying you need more support. ❤

[@broken_rebirth]

The death thing is something I relate to. I say to my cat, Tai and my partner all the time that I don't now what I'd do without them so they can't die. EVER. Before me. Now my rational mind is like: well, your cat is not going to live that long. you need to accept this now. But I really do not know what is going to happen. By the way, I was never assigned a level but based off this very helpful video I do feel I'm level 2. Let me explain: I may be above average intelligence and not have to have someone cook, clean or care for me per say, but my social inability is so obvious I turn people off. I have tried and thought I was masking well, but I've been told time and again every time I've been let go from a job, or lost a friendship that people found me to be "cold", "nonchalant", like a "sociopath", "not personable or sensitive towards others needs" aka totally "unempathetic", "narcissistic" or "only caring about myself and living and existing in my own little world". Yet, I feel emotion so strongly and care so deeply I need decompression time from being around people MORE than I actually spend with them in any capacity. I get burned out so quickly just subconsciously masking. I'm trying to not mask because it's lead to severe anxiety and depression and feeling very isolated because people perceive me this way. I've never been able to figure out what it's like to be human apparently and people who do not take the time to get to know me generally find me very "flat affect" or "unemotional and cold". I do not conversate, nor do I know how to do this. I've been told time and again that it's like I'm "talking at people" and not "with them". I also can't answer questions very concisely or to the point in any way. If you ask me something I will always go off on some form of disordered thinking. Often this looks like tangents and sometimes I will lose my thought process because of my sensory challenges. If a sudden noise interrupts my train of thought. I'm only good at very specific things in the work force and this has led to me being let go from every...and I do mean EVERY SINGLE JOB I'VE EVER HAD or I've quit before I could be let go. I was never fired. I was always let go because ..and I quote: "You seem to have the best of intentions and perform above expectations but there are just some things you can't learn and this is causing some conflicts on the team/you're making us lose business." So I've realized that I can't work around people at all. I will offend someone and not know what I said, or didn't say, or did, or didn't do, that deeply offended someone. In fact I'm so freakin' sick of being rejected for who I am, I now am flat out hostile towards unwanted social interaction no matter who you are. I cannot function in society essentially. In 2022 I finally accepted I needed to apply for SSDI because not only could I not work due to my physical disabilities I developed in 2020, but I could not find any science-based part-time work I could do from home at any time of the day I was feeling well enough to work, that would allow me to financially take care of my needs. Without SSDI I would be homeless today with my poor cat. I am 38 and was approved at 37, female. Mental health was considered the primary disabling condition that prevents me from working. Note: this doesn't mean my physical ones do not matter, they just found that the evidence of my inability to functional in society and work at a SGA was well documented and demonstrated so they looked at my mental health records as being a primary thing. On top of being autistic I have CPTSD, which is largely due to childhood trauma (medical) but also largely because of my experiences as an autistic woman. I have 3 total friends..I mean in my entire life...that I can call on and consider my sisters. One is out of state, one lives far away, and one is fairly close to me geographically. That's it. One of those friendships started recently and she is a retired nurse and ex coworker at a metallurgy lab we used to work at together. She noticed how severely limited I am in my social cues, communication and such. I cannot detect deceit. First thing she noticed about me..apart from all my weird mannerisms LOL. But that was her 'red flag' moment and when she started acting like my guardian angel. YES, not detecting deceit is something that can SIGNIFICANTLY negatively impact your life because people I thought cared about me took advantage of me. This inability to read body language and facial expression and tone isn't just me being socially awkward. It could in theory lead to a situation where your life is threatened because yOu are not picking up on something--like someone being very mentally unstable and a violent person. It took being late diagnosed and going through so much trauma to realize how severely limited I am. I'm at the point where I'm GRATEFUL I am an introvert loner because I no longer desire human connection. I hate humans in general. I do not need human interaction to feel purpose, or fulfillment outside of my partner who is active duty deployed as his career gives me plenty of space to process and decompress. He is also autistic so he 'gets it'. He's more functioning than I am but just like me.cannot fit in society at all. We both do not recognize social hierarchy or authority. Like this order to things doesn't exist. We are the leaders, we lead our own lives how we see fit and for whatever reason, people who are sheep want us to lead them. I just want to be left alone. He enjoys leading. No one has any authority over us. This is a problem in society because if a cop pulls you over for speeding..you can imagine the interaction and how disrespectful we will be, without even knowing it. There's at least, easily, 50 or so plus things I do that I didn't realize I did , that people tell me about that come off as 'rude'. And this is why I always say: I'm great with science but not great with people. I'm very gifted in learning sciences that have a way of boiling over into other sciences, therefore requiring constellation or systemic thinking. Leave me in a corner do problem solve and I'll die happy. I do not think linearly, and I am very literal. I do not understand jokes, or a lot of that more tonal stuff. Like if someone makes fun of me I take it literally. I do nto understand how to express my emotions or how people can feel a variety of ways about a person but still be deeply in love with them or love them platonically. I speak very monotone. When I'm overstimulated I literally just STOP TAKING CARE OF MY NEEDS. What does this mean? I don't eat, I have trouble decompressing and reving down so I can sleep. I may forget to even get up and drink or eat because I'm ruminating over a past conversation or my day. I will go days without bathing because sometimes it's just too much work. It's too stimulating to show when I've had a stressful social interaction that day or had to go food shopping. I literally cannot shop without a million tricks in my bag and even then I have a time limit. Music really helps ground me so I often use music to help me get through shopping and get home. I cannot afford delivery, so I have to shop for myself because I have no one to do this for me on a regular basis. I also would feel poorly about myself and desire independence even at the cost of my mental health. I used to love baking, but hate and suck at cooking. I can't do that any more because all my dr's appts are so overstimulating I can't muster the freakin' energy up to bake. For all of these reasons and many more, do I think I'm level 2. I really hate being told I'm a "high functioning autistic" because I'm literally shunned from society and sadly every construct we are forced to deal with to get food, have shelter and so on..to basically live...interfaces with society as a whole. O.O I want to take "high functioning" and shove it up their butt is what.

[@hollyoddly]

I resonate so much with a lot of what you said, so thank you for commenting! I know it's very frustrating to be labeled by people who don't really know you truly or care to see.

[@21zero64]

🍩 this resonates a lot, tyvm for sharing presently living the experience of homeless undiagnosed L2 audhd etc for 9y now its an utter nightmare just bc of institutionalized ableism, nevermind inadequate public infrastructure, moral failures & other baffling & ignorant justifications for persistent dehumanization, rejection & active exile, tbh given opportunity i would actually be willing to elucidate why at the tender age of millennial this state of disenfranchisement has endured despite my every effort to successfully perform as a minimally viable adult & sincerely advocate for critical compassion & reform unfortunately, all of my intrinsic personal resources are already dedicated to a final attempt at achieving somewhere more habitable than a pine box before unrelenting burnout extinguishes the last of my will & navigating the circuitous & illogical prerequisites that determine whether im entitled to live is utterly exhausting ty for witnessing a brief glimpse of this hell you deserve better 💙

[@hollyoddly]

You deserve better, too. We have such good minds, and if our society could be just a little more flexible to work within our unique needs, the world would be a much more successful place. I think autistic people are much needed. I hate that we are often thrown away.

[@sheebeebuddy6793]

I was diagnosed as a level 1 but I’ve felt for a while that I have level 2 support needs. I think the psychiatrist found out I drove myself to the appointment and made assumptions based on that. But my mom had to do a ride along with me the day before so I could experience the route with her there for support. I also can’t work full time without completely neglecting my own needs like hygiene and nutrition. I can’t live alone for many reasons. My mom has supported me in basically a caretaker role until my partner moved in and now she does most of my day-to-day support. I also relate to the hope that I die before my mom and partner. I used to have horrible nightly anxiety attacks about the idea that someday my mom would most likely die before me. I still have a lot of fear about that, but at least I have my partner. If I was on my own, I would need to be in a group home or something. Or I would be homeless. I also would have flunked out of school without my accommodations (for adhd diagnosis) and I almost dropped out even tho my grades were good. The psychiatrist also included some false info in my report, possibly because she took several months longer to write it up than intended, so maybe she misremembered some details? But she took notes? I don’t understand why my report says I make normal eye contact when I didn’t make eye contact with her the whole time and she even commented on it. And she said she thinks I was misdiagnosed with adhd bc I was “focused the whole time” during the assessment, but at the time Autism Assessments were my hyperfixation!!! I tried explaining that to her. She didn’t seem to listen. And she assumed my adhd meds had made me “feel better and gave me more energy” when I specifically told her they helped me focus but I hated taking them bc they made me feel like a zombie. She really didn’t listen to me. I’m just lucky to get the autism diagnosis at all I guess. (Which she also presented to me as if she thought I would be upset about it) ugh sorry for the rant

[@hollyoddly]

That's so frustrating! The entire system is flawed, and I feel like a lot of people who need more support get overlooked for silly reasons.

[@hillarygoun692]

You are doing very well. I was diagnosed with PDDnos in the 1980's, so I don't know what level I would be in today's terms. I feel immature for a 42-year old. I've had difficulty keeping a job, and I am going for another Master's Degree in Special Education. Keep me in your thoughts because I was told to Withdrawal from student teaching when I got my Master's Degree in Early Childhood Education. It was so hard to convey the lessons and I felt severely judged.

[@hollyoddly]

I am most definitely going to be thinking about you! We need autistic people in education! Our unique brains are an asset.