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
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)
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. 🖤
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.
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
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.
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
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.
@@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?
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).
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.
@@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.
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.
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. ❤
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).
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!
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!
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!
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
@@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!
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
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!
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
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. ❤
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! 🧡
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!
@@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! 🧡
@@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.
@@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! 🧡
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.
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. 🖤
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.
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.
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.
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!
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!
I was never given a level, but I think that when I was first diagnosed in 5th grade I would have been level two. Nowadays, I’m a lot more independent. I’m going to be going to college in a year and a half (I’m graduating a year behind, but still), my mom used to think that I wouldn’t be able to go to college, then she thought that if I went I would have to do it at home. Now we’re looking at possible colleges all across the US. I still need support, but I don’t think it would be considered “substantial”. The only thing that I still need to fix in order to be independent is my meltdowns because they can get really bad.
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
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”
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!
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!
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.
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.
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.
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!!! ❤❤❤
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.
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.
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!
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.
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!
(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)
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. ❤
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 :)
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!
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.
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.
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.
@@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!
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.
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).
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.
@@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.
@@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!
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.
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...
Thank you for showing up here! I love Lizzie's channel! She has great content on being a creative autistic woman and the experience of aging. I get so much from her videos and really feel seen by her.
I have a couple observations: #1) The chart of Levels shows in Level 3 male -biased descriptions (boys rock and spin generally, whereas girls show less repetative behaviors and different ones generally); #2) Social Security Administration's Listing of Impairments for ASD are so male-biased and outdated they don't mention the Levels.
Yes, there is a lot of proof that doctors and scientists have a male-biased view of autism! That's why I bring up later in the video that just being female is a barrier to diagnosis. I do have to say that I rock a lot, both front to back and side-to-side, so I bust the stereotype on that one.
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.
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
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.
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.
your articulation is beautiful. this video opened my eyes that i may be level 2. i am a 24 yo female. i've been considering BPD and still am, but this was really helpful. i've noticed how much my support needs have decreased after forcing myself into uncomfortable situations. like exposure therapy. taking jobs that i knew would be really hard at first, but i knew i could do it in the end. i kid you not, i even had my boyfriend turn the shower on for me until recently. but i do it myself now :) after fighting with it and getting pissed off lol. you are awesome. thank you!
Super interesting discussion! I just got my diagnosis back in march, and here in the Netherlands we generally don't get assigned a level when we are diagnosed (afaik). I find myself relating to both level 1 and level 2 experiences. I've also been in chronic burnout (leading to depression) for like a decade, so my support needs definitely increased during that time. I've been thinking a lot about how our support needs change throughout life, as our circumstances and our capabilities change. I wonder what your thoughts are about this? 😊
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.
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!
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,
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.
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!
Thank you for this. Both myself and my spouse are late diagnosed ASD and ADHD. My son was just is also an AuDHDer. We were told he was level 1, but it's become apparently over this school year that he probably is level 2.
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!
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!
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.
Hi Holly, thanks for rounding up this very useful information. I haven’t gotten into exploring levels (somehow although I’ve watched a zillion videos on autism this escaped my notice that it is a thing, maybe because it’s not so much in the UK where creators I’ve watched are, and maybe cuz like you said the type twos and threes need more representation!). I think part of what makes it difficult in addition to what you mentioned is that how much support is needed might vary. For me, it’s like spoon theory but from a lens of cumulative life stress- that’s how I think of it. I don’t know how much you might think it relates to you as a level 2. For me, I lived through my 20’s and 30’s not knowing I was autistic, but I didn’t have nearly the sensitivities and issues that I have now that I’ve hit my 40’s. So it feels like my support needs now would be very different from what I had back then in the corporate world or in my personal life. Awareness explains part of it, since I’ve only known I was autistic for a year now. But I’ve been thinking of it for me like spoon theory, but at my current phase of life, after being burned out by corporate work environments and social BS, I feel like I just have way less spoons than I used to have on average. So it’s like I’m aging into more of a level 1.5 or something 😂 This may just be burnout combined with the desire to unmask… I’m still trying to figure it out. I’d be curious to know if your needs have changed over time. Another great video, thank you!
So many autistic people talk about the spoon theory, and it makes so much sense for us! I think all autistic people were born with less spoons. 😂 But as a child, even though I didn't have a diagnosis, my autism was very apparent. My mom and I have had a lot of discussions around all the things that concerned her with me. I've also heard a lot of people talk about how their support needs get higher with age! More BS and less support = a autism "flareup" almost, if that makes sense! I've had that with meltdowns while going through depression, etc.
@hollyoddly So it seems like you have had support needs throughout your life that maybe spiked while you were in a stressful time, while I don’t remember having support needs as a kid, although things kind of fell apart for me in high school. So if I were to draw a graph of support needs over time, yours might be like a flatter line with spikes, and mine would be a slope that starts small and gets taller as I get older but hopefully is peaking out sometime around now because I am being optimistic hehe. That contrast seems interesting to me, but who knows whether that is a common trait based on levels because you can’t tell from the horrible infographics 😜 But like you said, more BS and less support plays a role too. Too much to graph, I suck at math 🙂
@@sarahjusted The dreaded high school! Yeah, things definitely got worse in high school. I needed more support before then, but at least depression wasn't a thing in elementary and middle school. That added an extra layer on top of all the other teen stuff!
@@hollyoddly Ugh, yes, high school… somehow still a thing the way it’s done… designed for and by neurotypicals, extroverts, and non-visual thinkers. Torture for everyone else! I wish I could go back and give myself a hug back then, I’d give you one too 😊 With your permission of course haha… I’m not actually a hugger but I feel like I could make an exception for past selves.
@sarahjusted We can just jump in a car and pick our teen selves up from school early and feed them delicious future snacks and detail all the ways that NONE OF THIS WILL MATTER. Lol
I just discovered your channel, and you mentioned you’re in GA… I am too! So hey neighbor xD I appreciate your insight and the pacing of this video was perfect for my attention span (points for that, hehe!). I’m AuDHD and figuring out my support needs at the moment- I hope you continue making videos and sharing your experiences! ❤
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. 💜
Amazing video Holly. I think it’s one of the best I have heard on the topic of autism, and I’ve watched hundreds I’m sure! Thank you for your thoughtful and caring articulation of the different support needs. It’s something I’ve been thinking about a lot lately. ❤
That means so much! I was very nervous putting this out because it's such a huge topic. It's important that we have space to think on what supports we need and how to let people know if we need more support.
I’m also a level 2 support needs autistic person, however I think that support needs often need to be used in a medical/formal context only because boxing people in like you said, often doesn’t always apply properly to us. Boxing us into a category is often counter intuitive outside of specific situations because despite allistics saying autistics think in black and white they sure do when it comes to us! The level of support someone might need can also fluctuate depending on the point of your life you are in. As the diagnostic criteria now says, these traits might not appear before the pressure in life becomes significant enough. I think this video touched on that briefly. Theres so much complexity, and I’d like to think like most things it is probably, as in name of our diagnosis, A Spectrum! The autism spectrum : ) (Which is why I love the infinity rainbow spectrum symbol so much because its true its like a color spectrum) However, I will agree that for an introduction as to where on the spectrum someone may lay, having these reference points might be useful! Speaking of outliers as someone who was given a level 2 support needs label, I think that I actually have met plenty of level 2 support needs autistics that have significant vocabularies, as do I. Being a level 2 support needs autistic, I found my connection in books and media rather then in people my whole life. I would spend the whole day hyper fixated on reading a novel when I was young enough to still have cartoon bedsheets. I loved Edgar Allen Poe but also The Hunger Games and coming of age novels! I was only trained out of using my large vocabulary when I was younger because people feel talked down to when a child walks up to them with the vocabulary of a college student I guess haha. Actually as a part of unmasking, I have been learning that speaking naturally does include phrasing that may seem purposefully obtuse to others. I even communicated to close friends during this process that if they ever felt like they didn’t understand what I was trying to say to just ask! Because it has never been my intension to talk down to or humiliate others with my vocabulary. It has only been my intension to provide clarity in my speech, and I think specific/advanced words can do that far better than using simple phrasing! That all being said I do find myself matching the simple phrase profile when I may be overwhelmed or burned out. My friends are incredibly aware of when this is happening when I go from using words like obtuse to repeating no over and over lol. So yeah! Like I said! Spectrum! It’s all so extremely complicated. I think sharing my personal experience with that trait might ring true for other people! And I love to speak to people about this sort of thing it fascinates me, truely! I loved this video I think it explains a lot of the frustrations I’ve felt as someone who doesn’t get enough support in life. Fantastic! Thank you for sharing Holly : )
i was diagnosed as an adult and i was told since i am an adult, that's automatic level 1 because anything more requires support to grow up and thrive (which i didn't thrive at all periodT don't get me started).. idk if i agree with what i was told because my mom straight up denied me all healthcare growing up because she didn't want her insurance rates going up and she kicked me out when i was 17 because she couldn't handle my meltdowns lol. i feel like i am level 2, esp since i have major struggles with communication and understanding people. among other things. i'm just grateful i was able to get diagnosed because even tho i honestly feel like my autism is OBVIOUS, it was a fight getting someone to believe me. and i have been homeless and stuff because of my autism interfering with my ability to work and function and stuff. fortunately i have my husband to take care of me and love me and i have told him he can't unalive before me and he needs more insurance so i can buy support if he does T-T
I got level 1 and yep, everyone notices. And agree having someone with helps a lot. And needed a bunch of work accommodations. My son got level 2 and thank you thank you thank you for your video. All of our financial planning is designed to support my son for his entire lifetime. I do think that I need to die before my spouse. I married a partner 8 years younger than me so due to the age gap, we’ve had this conversation before. ETA: my son is 13 and he also needs me to turn on the shower water for him as a support.
I walk away from conversations when I'm bored and it was worse when I was young. I understand exactly what you mean when you say you can't turn the shower water on. It's one of those things that NTs think of as one step but it's actually several and it's overwhelming to navigate that and try to prep yourself for the change in temperature and humidity.
I have really sensitive skin, so what you said about the show makes perfect sense! My skin itches a lot, which I've seen a lot of autistic people say is also a problem for them.
Wow thank you for your insight. I am undiagnosed, 33, I only found out I was autistic when people in my life started asking me if I was. I have nothing on my record. When you got to the homelessness and death part, I cried. I’ve been homeless several times and without my (wonderful) husband I’d be homeless. I always assumed I was level 1 but your insight has made me wonder, and if I am level 2 I should probably pursue diagnosis more seriously just in case there may be supports I could access if needed. Anyway, thank you for this video!!
Oh my gosh I thought I was the only person who said I have to die first as I won’t survive without my husband ! I live in terror of him going first. I wasn’t assigned a level when I was diagnosed but it now very clear I am level 2 ..thank you for helping me see this.
This video touches a nerve for me. I was 'diagnosed' not autistic over 20 years ago, and slapped with the label Schizotypal Personality Disorder instead, because in order to survive this world, I spent most of my life in an intense fantasy world. I was told I'd either become full schizo or die in a few years, neither of which happened yet- I'm 47 now, and yes, 'female' (actually, non binary). I'm also no longer in a fantasy world, happily. I found my way out of that, found healthier means to cope. I did alot of hitchhiking in the late 90'- early 2000's, and according to the assesser, apparently no autistic person would ever do such a thing. Somehow I seriously beg to differ, because I'm certain I'm autistic, and those who know me are certain too. I'm on a wait list to get rediagnosed, maybe I'll find out 2 years from now.. The wait list is long. Many of the points you shared in your video, are things I can so relate to. I can't drive, if my mom dies before me, I'll likely die too, I'm on a disability pension because I can't hold a job- even if I'm very responsible, I'd end up homeless if I didn't have significant support. The hitchhiking is hard to explain, there were many reasons for it, none of which pertained to needing wild adventure. I never drank or took substances during it, there was no wild abandon, just a need to survive and pray there was some magical place where I belonged (there was none, and if it weren't for increbible people along the way that took care of me until I overstayed my welcome, I wouldn't be here). I barely got through school, there was no way I was doing post secondary. I'm gifted in the arts in an imbalanced way- that's all I can do, but I can't sell it, no matter how I tried to, and burnt out so bad trying, I'd need 6 months to recover. I feel like an abject failure and ashamed at every turn, and yet if you saw me on the street, I appear largely put together. I'm very well spoken, I appear, like you, able. The minute people clue in I'm weird in an awkward uncanny valley way, they can't get away from me fast enough. Whatever friends do stick by, are usually autistic or adhd, or some other thing that ostracized them from polite society. Thank you for sharing💙🐬
Fellow autistic here, i did my fair share of hitchhiking and hopping freight trains in the early 2000’s. I didnt crave wild adventure either, for me, i just couldnt cope with the 9-5 nor could i cope w trying to fit in with polite society. Being homeless is one of the only ways to get support needs met for a lot of people, unfortunately.
the level system is as flawed as the DSM. levels change. showers are sensory intense. turning the shower on is LOUD. I'm going to look for waterproof earplugs
For me it's something about the act of bending over to touch the knob itself that freaks me out, and I don't know why. I don't have OCD, and the sound of the shower is fine once it's on. Oh, if only I could figure out my brain!
I was diagnosed level 1 but I am definitely level 2. I'm just so good at masking that I got misdiagnosed as level 1 lol. I personally dislike leveling autism or grading it because we dont do that for neurotypicals. In my bubble you're either autistic or not. There are no levels to be graded no matter the level of extra needs the person has.
I can understand where you are coming from with the labels, but autistic is also a label, and I'm glad I am able to use it because it identifies me authentically and makes me a part of niche group that gets me. I once read that labels create community, and I think that can be wonderful.
@hollyoddly I love being autistic and love being known as autistic.I just don't agree with the levels the medical system gives up. It feels weird to me. I love all autistic peeps and most of my friends and family are autistic too 💕
Mostly in medicine and psychology the primary purpose of the labels is so that appropriate treatments can be given to appropriate groups. With a proper diagnosis for most conditions, like Bipolar, avoids needing to try a bunch of medications that won't work. So, I agree that they don't fit a loved experience, but at the same time,. it's a handy starting place for someone who is just getting used to the topics.
I feel like it can be difficult to determine the border between support needs levels at times. Some people are probably right on the edge and their need for support fluctuates enough that at times they seem like one level vs another. For me, I'm not sure if I would be level 1 or level 2. On one hand, my experience is similar to level 1 individuals in that it's more common for people to be surprised that I'm autistic, and I've had people tell me I don't seem autistic. But I've also had people tell me that it's so obvious that I'm autistic, and most people consider me "weird" if they don't put the autistic label on. I am also extremely good with language, very intelligent (in the general IQ way, which I know is an ableist measurement), and I get great grades in school. I am currently in graduate school. And so far, I've demonstrated the capacity to work part-time at a daycare (while living with my parents). On the other hand, I need more support than a lot of my level 1 autistic friends. I cannot drive because it is too overwhelming and I am unsafe on the road, so I am reliant on my parents, brother, and friends to help me get around. When left to my own devices, I can really only manage to cook about once a week, so I end up eating a lot of leftovers of the one thing I cooked and stuff that I can easily pop in the microwave. While I have done very well in school, I have needed accommodations for extensions on assignments, longer testing time, and ability to use sensory tools during tests. I have just reached the point in grad school where we are shifting from academic classes to internships, and I am on the brink of being dismissed from the program because I could not handle the demands of my internship and had to withdraw. I have basically one more chance with my intervention plan. I am worried that I will not be able to work full-time, and will thus fail out of my program because I am not allowed to complete my internships part-time (it represents a "fundamental alteration" to the program, apparently). When I was in autistic burnout about 4 years ago, I think my support needs were more clearly in the level 2 category since I had frequent meltdowns, significant hygiene issues since showers were too overwhelming, and frequently lost my ability to speak, which caused me to need to use AAC. I was also unable to mask my expressions and stimming during that period, so it was obvious to pretty much everyone that I was autistic (I didn't get the "but you don't seem autistic" reactions then). But once I recovered from burnout, I was able to live independently (although I needed people to drive me places and wasn't great at nourishing myself), keep up with basic hygiene, go to grad school, do well with my classes, and mask pretty well. Now though, I'm worried that the demands of grad school internships are pushing me into another autistic burnout... I was identified as autistic late at age 17 when I went into autistic burnout, and late diagnosis is more consistent with level 1, but I'm also a girl so *shrug*
You bring up a great point that I didn't touch on that levels and support needs can absolutely fluctuate over time. And since intellectual and learning disabilities aren't a hallmark of autism, you can be very intelligent and have higher support needs. The way I look at is to take it one portion of your life at a time. Like, what are my support needs right now with what I'm going through currently and in the near future? Sometimes that helps me figure out exactly what I need and make a plan.
I’ve done the same with certain songs and fallen into random things that I like to follow like drift music and drift car racing. I wish I was diagnosed, but I have chronic PTSD and it’s always been in the forefront. ❤ I really appreciate your content.
I fit the description of level 1, but some aspects are more level 2, like the extreme interests and the emotional difficulties when interrupted mid-task. I don't walk off in the middle of a conversation, but I have had to learn to not just walk away when I thought the conversation was over. I'm still not sure what I'm supposed to say, but I know I'm supposed to say something. And my coworker knows I'm really OCD because of rigid or inflexible behavior. He knows an autistic person and I'm not exactly like that. Romantically, I seem to be closer to level 4. I've made it to 64 without a serious relationship. Overall, I think support levels may be more specific than the current understanding. Individual traits might be at different levels in various aspects of an individuals life. Overall, I would say my lifestyle is currently level 0. Few people were diagnosed as autistic when I was growing up, so I had to learn to do it all for myself, however difficult it was. Maybe I just became my own support.
Ah, yes! I was told I had OCD tendencies because of my rigidity. I am also very inflexible, so I know how you feel. Are you happy to not have relationships? I know a lot of autistic people are.
@@hollyoddly I'm more resigned than anything else. I wanted to get married and have a family, but I have trouble making connections. I have a good life, just the same.
As a parent of a level 2 autistic child this video was very insightful. When you talk of death as a parent i get very panicky when i let myself think to much of what will happen to my son if my husband and i die before him, which is the more natural progression. It is not that i want to live longer than my son because the thought of him dying also is something i cannot bear to think about, but if he did i know his whole life he would be safe.😊
I've been assessed and diagnosed with ASD and ADHD but not given a support level. Perhaps they don't use them in the UK? How do i work out what support level.i am?
I also don't think the UK uses support levels. That's kind of what I'm touching on here is that's it's confusing and hard to know what support level you might be. The information out there really isn't very helpful at all. If you resonated with what I said, you might be a level 2. If you don't feel like you need quite as much support as what I talk about, you might be more level one, and of course if you think you need even more, you could be level 3. I'm not a doctor, so I can't really give good advice around this, unfortunately. I do hope someone else who has some good resources might also comment to you here, because I haven't not be able to find useful resources.
I was also diagnosed in the UK, and not given a level. I was told it would be different in different circumstances and according to how much stress I was under. Friends had similar experiences and it sounds like levels are not always used in the UK.
When I asked why I got level 1 and not level 2 which I honestly feel would probably fit me better, the answer I got was that I could live independently and not at a care home or with my family. So the levels are to me extremely arbitrary and seems to vary country by country. It is possible I may have gotten level 2 in the USA simply because I am not very good at masking (I struggle with eye contact among other things that makes it more visibly noticeable), but I got level 1 in Sweden because we have a much more developed welfare system where people who can't live independently live at nursing homes, which seems less common in USA, likely due to costs. Whereas here people live there for free. If you have to live at a nursing home, you are likely to be considered very disabled in several areas of life whereas for me, I feel quite disabled in some areas but less so in others, which makes it possible for me to live independently and work, even if that comes at the cost of heavily compensating in other areas I am less capable in.
Hello, and welcome! It never hurts to ponder on how much support you might actually need because then you might be closer to articulating your experience to others and possibly getting some of that support...though that part is always easier said than done!
I’m so glad the algorithm let me find you! I’ve been looking for more level 2 autistic people to subscribe to. Hello! Super weird the level description isn’t actually based on specific support needs… who wrote these!! (Rhetorical)
Getting diagnosed can be really difficult for so many reasons! I think it is good that people are able to self-identify as autistic and understand what their needs are.
I know that's scary from your side, too. I know I worry, but my mom and my husband worry a lot, if something were to happen to them before me. I wish there were more resources where adults with more support needs could have a place to be safe and taken care of. On the Australian "Love on the Spectrum" I saw one person was in a nice group home for adults. There just isn't enough out there like that. ❤
I've got a huge vocabulary, I'm incredibly intelligent. I listen to audiobooks as I'm also dyslexic. There are a lot of things I need support with that i can support others with. I'm a teachers aide and support students in all kinds of ways some of them I need support with when I'm doing the task.
I'm level 2 Autistic 54yrs old woman. Late diagnosis of 2023. I wasn't recognised with ASD in my childhood in school. And due to my Serbian background, there's a blind eye to being different. Serbs consider everyone "normal" and if you tell them that no one is normal, you will get a huge argument. In my case, I got slapped on my face by my Tata (father). So there's a huge stigma in my Serbian culture about being "different". I ran across a post in rededit about a guy in Serbia 🇷🇸 who was diagnosed level 2 Autism. He said that only level 3 Autism is only ones that get recognised in Serbia and he's yet to met or chat to another Serb with level 2 Autism. If you search, you will find that chat with me, Bozana. Thing is, Serbs live with so many Autistic people around them, that they don't see it and consider it normal. Nikola Tesla fir sure was Autistic and so was Mara, Einstein's ex-wife, was Serbian but I bet my bottom dollar she was Autistic too. A lot of Serbs are OCD to the extreme and over sharers but some of them also hide it with some dry humour. As for me, I live in Cairns, Queensland, Australia and was born in Australia... but that didn't help me to get a diagnosis during school years. I was called LAZY.. They put me in "special education side classes" and that's when they called lazy. I just wasn't interested in what they were teaching. I was BORED! I was also bullied, abused verbally and physically bashed at school. It was until i was an Adult that I did what I always loved, is computers. I'm a Network Engineer, Systems Analyst and 3D animation with motion and movies but I never could get the job, despite being the very top of my class. HAD I known I was level 2 Autistic, I would've had more support my earlier... Just my Serbian culture and background with my parents were obstacles. I'm currently on a pension with home support from my Australian government from NDIS. Also, my mum has dementia and she's undiagnosed Autism. And there's a huge link between Autism and Dementia.... I think I'm showing early signs and I'm going to get myself tested. Thank you so very much for making this video ❤💐🌸🌹
About being an outlier, I have dyslexia but especially as a kid I enjoy reading, just very slow. But it also affects my language learning skill, but I love languages.But by pur immersing myself in the english language to do the internet and Tv shows, I became very good. And now I am on the path to learn japanese, it is a slow process and I never be able to reproduce most Kanji but its okee as long I can have conversations and understand it, I would be more than satisfied
I got diagnosed this year at age 28. The psychologist giving me my feedback and diagnosis, agreed that I’m between levels. I fluctuate. So she cannot accurately give me a support level. But gave me level 1 despite that agreement. I really don’t believe I’m level 1. I do believe I’m level 2. The only reason I believe that I could come across level 1 is because of the support I do have from my fiancé and our families.
I am not sure what level I am, I am Gen X and not diagnosed. I believe that both of my sons, 18 and 24 are about a level 2 as well as my elderly Mother who I have been supporting since I was 15. She can’t drive, doesn’t take care of herself, doesn’t pay certain bills, has strict routines, and doesn’t do housework unless asked to. It’s a lot to deal with on a daily basis for an AuDHD person. I think that I have been in burn out for at least 25 years.
This is so interesting! I think I can come across as disingenuous because I have to think a lot and rephrase so as not to seem too rude or direct or indiscreet to NTs.
One song, my tears ricochet from folklore again, and again, and again and again, and again that doesn’t make me a Swifty, but it could make me autistic 🤷♀️
Or it could make you heartbroken over a situation or person! That's a sad song, but I really like it! I'm diagnosed as autistic for meeting all of the criteria of autism, so I think it had to do with a lot more than my intense interests and repetitive nature, though that played a part because it's in the DSM. I feel like I would be a disgrace to Swifties if I called myself one because they probably listen to more of her music, know things about her, buy her merch, go to her concerts etc.
Hello I have no level bc in the uk but i have moderate support needs. (I am 16) i need help for doing some to most bADLs (help ranging from verbal to hand over hand prompting as well as other support like supervision etc) and my mum does my iADLs for me mostly. I also cant leave the house on my own and have significant difficulties in social interaction and restricted repetitive behaviours and i cant go to school currently (we are getting an ehcp soon hopefully it will help). I also likely have autistic catatonia which has caused me a lot of issues. It is nice to find a level 2 person on youtube as i havent found many people on here sadly.
Being 16 is so hard, even without having moderate support needs, so it can be unimaginable for people who do. I wish there was more of a support network for autistic people to see each other! Just having someone around who is your age and knows some of what it is like would be really cool. I hope you feel like you get the support you need!
@hollyoddly yes. I also want there to be a support network for autistics to see each other that would be very cool! For me it is challenging due to my needs to access stuff like we tried an sen group but I had to leave but I hope soon I can find somewhere. My needs are somewhat met, better now than used to be. ☺️
I hate showers I don't like being sprayed with water. On a practical level I find manipulating the mixer to get it to the right temperature is... much harder than it looks.
I find the support needs level system so unhelpful and I am glad we don't have it where I live like factually I'd be level 2 but also I am so toxic about myself that I feel heavy autistic impostor syndrome whenever support needs come up because literally the only thing I need to get through life is minimum revenue without having to work (which you get no matter the 'severity' of your disability here in france) and I can just poorly cope around everything else
Level 2 masked and interpreted as Level 1 for sure well I was diagnosed aspergers then just ASD but levels were never discussed at that time I'm definitely needing much higher support than I ever have got especially since I have been burnt out and essentially a complete agoraphobe unemployed for many years now I think I really did not get the help I needed at the worst times and now it does suck that I don't even know what those needs are other than they were never truly met
I'm always working on trying to understand what makes me the way I am; I think I was treated as if i had normal development when i was actually very very far behind and developed very irregularly and unhealthily and I'm certainly not well adjusted as an adult now
I'm so sorry you didn't get the support you needed! I was pushed way too hard in school, and sometimes my parents basically did my homework to get me through. This make me look less behind to people who didn't live with me and see my struggles. I think my parents really were afraid of me falling behind, when I actually think that would have led me to getting the proper support earlier. Employment is a huge problem throughout autism, and you're completely right that burnout is a problem that causes stability and skills to drop. 🖤
Top 0.5 % of no such thing as a fish listener last year with an account I made in August because I missspelked my email and needed to subscribe to premium for the podcast because I was camping Massive interest in books / language,, I'm still on the wait list no idea what leval i might be because I also have a brain injury
Hi! Former BCBA, personally multiply neurodivergent. I am diagnosed 2e (G and T, "HSP", and adhd). Girllllllll! We got so much WRONG wrong about this topic. I can tell you damn straight where all your L1 are hiding: they don't they are neurodivergent. Autism is not Autism (its a collection of traits like you said) symptoms are nearly traits that are inconvenient to the "documemter", really truly. If you want to know where the L1s are, I will tell you they ARE the g and t community and nobody will say that out loud because tthe level of missed off people will be if we actually told the truth.. ALL, and I do mean ALL, is.born from trauma. It is caused direct, indirect , and epigenetic trauma layered together 😊. I can prove it too. If yyou wanna know more, kid you not, come sing this way and I will tell you all I know, and all I think I know. I don't want to sell a thing. I just want to make my world a better place by sharing what I know. Blessings to everyone who finds and reads this.
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
❤
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)
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. 🖤
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.
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
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.
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
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.
@@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?
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).
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.
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!
@@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.
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.
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. ❤
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).
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!
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!
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!
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
@@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!
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
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!
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
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. ❤
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! 🧡
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!
@@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! 🧡
@@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.
@@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! 🧡
@@hollyoddlywomen are more adjusted usually, to fit into the society. That's why it's often harder to figure out, that's something wrong.
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.
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. 🖤
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.
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.
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.
Some of the things you brought up I have never thought about before, so thank you so much!
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!
Thank you so much, Jenny! I'm glad to be a part of this community with you!
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!
I was never given a level, but I think that when I was first diagnosed in 5th grade I would have been level two. Nowadays, I’m a lot more independent. I’m going to be going to college in a year and a half (I’m graduating a year behind, but still), my mom used to think that I wouldn’t be able to go to college, then she thought that if I went I would have to do it at home. Now we’re looking at possible colleges all across the US. I still need support, but I don’t think it would be considered “substantial”. The only thing that I still need to fix in order to be independent is my meltdowns because they can get really bad.
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
Thank you so much, because when you say you know what I'm talking about, it makes me feel seen, too!!
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”
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!
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!
It can be so tough when even our supports don't understand us!
As a fellow level 2 AuDHDer, the plan B idea was super helpful thank you. So glad I found your channel 😊
Yay! I'm glad it helps because I get so distressed when plans change, and I can't foresee what will/should happen next!
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.
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.
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.
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!!! ❤❤❤
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.
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.
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!
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.
It can be so challenging to live with people with similar needs but maybe to varying degrees or who express those needs differently! ❤
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!
such an important video. thank you for making this excellent video!
Thank you so much!
I have always said that I say what I mean and mean what I say and it is so frustrating when other people read more into what I say.
(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)
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. ❤
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 :)
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!
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.
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.
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.
@@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!
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.
Great video! Very interesting.
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).
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.
@@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.
@@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!
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.
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...
Hi Holly I found you through creative autistic. Another Autistic youtube channel. A brilliant video ❤
Thank you for showing up here! I love Lizzie's channel! She has great content on being a creative autistic woman and the experience of aging. I get so much from her videos and really feel seen by her.
I have a couple observations: #1) The chart of Levels shows in Level 3 male -biased descriptions (boys rock and spin generally, whereas girls show less repetative behaviors and different ones generally); #2) Social Security Administration's Listing of Impairments for ASD are so male-biased and outdated they don't mention the Levels.
Yes, there is a lot of proof that doctors and scientists have a male-biased view of autism! That's why I bring up later in the video that just being female is a barrier to diagnosis. I do have to say that I rock a lot, both front to back and side-to-side, so I bust the stereotype on that one.
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.
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
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.
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.
Interesting!
your articulation is beautiful. this video opened my eyes that i may be level 2. i am a 24 yo female. i've been considering BPD and still am, but this was really helpful.
i've noticed how much my support needs have decreased after forcing myself into uncomfortable situations. like exposure therapy. taking jobs that i knew would be really hard at first, but i knew i could do it in the end. i kid you not, i even had my boyfriend turn the shower on for me until recently. but i do it myself now :) after fighting with it and getting pissed off lol. you are awesome. thank you!
Super interesting discussion! I just got my diagnosis back in march, and here in the Netherlands we generally don't get assigned a level when we are diagnosed (afaik). I find myself relating to both level 1 and level 2 experiences. I've also been in chronic burnout (leading to depression) for like a decade, so my support needs definitely increased during that time. I've been thinking a lot about how our support needs change throughout life, as our circumstances and our capabilities change. I wonder what your thoughts are about this? 😊
Yes! I wish I had touched more on this subject. Support needs definitely change over time and with our mental health, too!
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.
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!
I enjoyed this video so much! You've got a great vibe & super educational ❤
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,
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.
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!
Thank you for this. Both myself and my spouse are late diagnosed ASD and ADHD. My son was just is also an AuDHDer. We were told he was level 1, but it's become apparently over this school year that he probably is level 2.
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!
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!
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!
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.
Hi Holly, thanks for rounding up this very useful information. I haven’t gotten into exploring levels (somehow although I’ve watched a zillion videos on autism this escaped my notice that it is a thing, maybe because it’s not so much in the UK where creators I’ve watched are, and maybe cuz like you said the type twos and threes need more representation!).
I think part of what makes it difficult in addition to what you mentioned is that how much support is needed might vary. For me, it’s like spoon theory but from a lens of cumulative life stress- that’s how I think of it. I don’t know how much you might think it relates to you as a level 2. For me, I lived through my 20’s and 30’s not knowing I was autistic, but I didn’t have nearly the sensitivities and issues that I have now that I’ve hit my 40’s. So it feels like my support needs now would be very different from what I had back then in the corporate world or in my personal life. Awareness explains part of it, since I’ve only known I was autistic for a year now. But I’ve been thinking of it for me like spoon theory, but at my current phase of life, after being burned out by corporate work environments and social BS, I feel like I just have way less spoons than I used to have on average. So it’s like I’m aging into more of a level 1.5 or something 😂 This may just be burnout combined with the desire to unmask… I’m still trying to figure it out. I’d be curious to know if your needs have changed over time.
Another great video, thank you!
So many autistic people talk about the spoon theory, and it makes so much sense for us! I think all autistic people were born with less spoons. 😂 But as a child, even though I didn't have a diagnosis, my autism was very apparent. My mom and I have had a lot of discussions around all the things that concerned her with me. I've also heard a lot of people talk about how their support needs get higher with age! More BS and less support = a autism "flareup" almost, if that makes sense! I've had that with meltdowns while going through depression, etc.
@hollyoddly So it seems like you have had support needs throughout your life that maybe spiked while you were in a stressful time, while I don’t remember having support needs as a kid, although things kind of fell apart for me in high school. So if I were to draw a graph of support needs over time, yours might be like a flatter line with spikes, and mine would be a slope that starts small and gets taller as I get older but hopefully is peaking out sometime around now because I am being optimistic hehe. That contrast seems interesting to me, but who knows whether that is a common trait based on levels because you can’t tell from the horrible infographics 😜 But like you said, more BS and less support plays a role too. Too much to graph, I suck at math 🙂
@@sarahjusted The dreaded high school! Yeah, things definitely got worse in high school. I needed more support before then, but at least depression wasn't a thing in elementary and middle school. That added an extra layer on top of all the other teen stuff!
@@hollyoddly Ugh, yes, high school… somehow still a thing the way it’s done… designed for and by neurotypicals, extroverts, and non-visual thinkers. Torture for everyone else! I wish I could go back and give myself a hug back then, I’d give you one too 😊 With your permission of course haha… I’m not actually a hugger but I feel like I could make an exception for past selves.
@sarahjusted We can just jump in a car and pick our teen selves up from school early and feed them delicious future snacks and detail all the ways that NONE OF THIS WILL MATTER. Lol
I just discovered your channel, and you mentioned you’re in GA… I am too! So hey neighbor xD
I appreciate your insight and the pacing of this video was perfect for my attention span (points for that, hehe!). I’m AuDHD and figuring out my support needs at the moment- I hope you continue making videos and sharing your experiences! ❤
Thank you so much!! And, yes! I'm in the Savannah area! ❤
@ Atlanta! Hoping to visit Savannah next year ☺️
@@miranda.currier It's lovely!!
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. 💜
Amazing video Holly. I think it’s one of the best I have heard on the topic of autism, and I’ve watched hundreds I’m sure!
Thank you for your thoughtful and caring articulation of the different support needs. It’s something I’ve been thinking about a lot lately. ❤
That means so much! I was very nervous putting this out because it's such a huge topic. It's important that we have space to think on what supports we need and how to let people know if we need more support.
@@hollyoddlyI’m so glad you tackled this topic! 😊 Great work!
I’m also a level 2 support needs autistic person, however I think that support needs often need to be used in a medical/formal context only because boxing people in like you said, often doesn’t always apply properly to us. Boxing us into a category is often counter intuitive outside of specific situations because despite allistics saying autistics think in black and white they sure do when it comes to us! The level of support someone might need can also fluctuate depending on the point of your life you are in. As the diagnostic criteria now says, these traits might not appear before the pressure in life becomes significant enough. I think this video touched on that briefly. Theres so much complexity, and I’d like to think like most things it is probably, as in name of our diagnosis, A Spectrum! The autism spectrum : ) (Which is why I love the infinity rainbow spectrum symbol so much because its true its like a color spectrum) However, I will agree that for an introduction as to where on the spectrum someone may lay, having these reference points might be useful!
Speaking of outliers as someone who was given a level 2 support needs label, I think that I actually have met plenty of level 2 support needs autistics that have significant vocabularies, as do I. Being a level 2 support needs autistic, I found my connection in books and media rather then in people my whole life. I would spend the whole day hyper fixated on reading a novel when I was young enough to still have cartoon bedsheets. I loved Edgar Allen Poe but also The Hunger Games and coming of age novels! I was only trained out of using my large vocabulary when I was younger because people feel talked down to when a child walks up to them with the vocabulary of a college student I guess haha. Actually as a part of unmasking, I have been learning that speaking naturally does include phrasing that may seem purposefully obtuse to others. I even communicated to close friends during this process that if they ever felt like they didn’t understand what I was trying to say to just ask! Because it has never been my intension to talk down to or humiliate others with my vocabulary. It has only been my intension to provide clarity in my speech, and I think specific/advanced words can do that far better than using simple phrasing! That all being said I do find myself matching the simple phrase profile when I may be overwhelmed or burned out. My friends are incredibly aware of when this is happening when I go from using words like obtuse to repeating no over and over lol. So yeah! Like I said! Spectrum! It’s all so extremely complicated. I think sharing my personal experience with that trait might ring true for other people! And I love to speak to people about this sort of thing it fascinates me, truely! I loved this video I think it explains a lot of the frustrations I’ve felt as someone who doesn’t get enough support in life. Fantastic! Thank you for sharing Holly : )
i was diagnosed as an adult and i was told since i am an adult, that's automatic level 1 because anything more requires support to grow up and thrive (which i didn't thrive at all periodT don't get me started).. idk if i agree with what i was told because my mom straight up denied me all healthcare growing up because she didn't want her insurance rates going up and she kicked me out when i was 17 because she couldn't handle my meltdowns lol. i feel like i am level 2, esp since i have major struggles with communication and understanding people. among other things. i'm just grateful i was able to get diagnosed because even tho i honestly feel like my autism is OBVIOUS, it was a fight getting someone to believe me. and i have been homeless and stuff because of my autism interfering with my ability to work and function and stuff. fortunately i have my husband to take care of me and love me and i have told him he can't unalive before me and he needs more insurance so i can buy support if he does T-T
This was so helpful and validating. Exactly the kind of representation that is so needed in the online space.
I got level 1 and yep, everyone notices. And agree having someone with helps a lot. And needed a bunch of work accommodations.
My son got level 2 and thank you thank you thank you for your video. All of our financial planning is designed to support my son for his entire lifetime.
I do think that I need to die before my spouse. I married a partner 8 years younger than me so due to the age gap, we’ve had this conversation before.
ETA: my son is 13 and he also needs me to turn on the shower water for him as a support.
Really nice video. Understanding support needs is helpful.
I walk away from conversations when I'm bored and it was worse when I was young. I understand exactly what you mean when you say you can't turn the shower water on. It's one of those things that NTs think of as one step but it's actually several and it's overwhelming to navigate that and try to prep yourself for the change in temperature and humidity.
I have really sensitive skin, so what you said about the show makes perfect sense! My skin itches a lot, which I've seen a lot of autistic people say is also a problem for them.
Wow thank you for your insight. I am undiagnosed, 33, I only found out I was autistic when people in my life started asking me if I was. I have nothing on my record. When you got to the homelessness and death part, I cried. I’ve been homeless several times and without my (wonderful) husband I’d be homeless. I always assumed I was level 1 but your insight has made me wonder, and if I am level 2 I should probably pursue diagnosis more seriously just in case there may be supports I could access if needed. Anyway, thank you for this video!!
Oh my gosh I thought I was the only person who said I have to die first as I won’t survive without my husband ! I live in terror of him going first. I wasn’t assigned a level when I was diagnosed but it now very clear I am level 2 ..thank you for helping me see this.
honestly i had the same thought about the first graphic you showed, it feels like something made for schoolchildren
This video touches a nerve for me. I was 'diagnosed' not autistic over 20 years ago, and slapped with the label Schizotypal Personality Disorder instead, because in order to survive this world, I spent most of my life in an intense fantasy world. I was told I'd either become full schizo or die in a few years, neither of which happened yet- I'm 47 now, and yes, 'female' (actually, non binary). I'm also no longer in a fantasy world, happily. I found my way out of that, found healthier means to cope. I did alot of hitchhiking in the late 90'- early 2000's, and according to the assesser, apparently no autistic person would ever do such a thing. Somehow I seriously beg to differ, because I'm certain I'm autistic, and those who know me are certain too. I'm on a wait list to get rediagnosed, maybe I'll find out 2 years from now.. The wait list is long. Many of the points you shared in your video, are things I can so relate to. I can't drive, if my mom dies before me, I'll likely die too, I'm on a disability pension because I can't hold a job- even if I'm very responsible, I'd end up homeless if I didn't have significant support. The hitchhiking is hard to explain, there were many reasons for it, none of which pertained to needing wild adventure. I never drank or took substances during it, there was no wild abandon, just a need to survive and pray there was some magical place where I belonged (there was none, and if it weren't for increbible people along the way that took care of me until I overstayed my welcome, I wouldn't be here). I barely got through school, there was no way I was doing post secondary. I'm gifted in the arts in an imbalanced way- that's all I can do, but I can't sell it, no matter how I tried to, and burnt out so bad trying, I'd need 6 months to recover. I feel like an abject failure and ashamed at every turn, and yet if you saw me on the street, I appear largely put together. I'm very well spoken, I appear, like you, able. The minute people clue in I'm weird in an awkward uncanny valley way, they can't get away from me fast enough. Whatever friends do stick by, are usually autistic or adhd, or some other thing that ostracized them from polite society. Thank you for sharing💙🐬
Fellow autistic here, i did my fair share of hitchhiking and hopping freight trains in the early 2000’s. I didnt crave wild adventure either, for me, i just couldnt cope with the 9-5 nor could i cope w trying to fit in with polite society. Being homeless is one of the only ways to get support needs met for a lot of people, unfortunately.
the level system is as flawed as the DSM. levels change.
showers are sensory intense. turning the shower on is LOUD. I'm going to look for waterproof earplugs
For me it's something about the act of bending over to touch the knob itself that freaks me out, and I don't know why. I don't have OCD, and the sound of the shower is fine once it's on. Oh, if only I could figure out my brain!
@@hollyoddly Would it help to sit down at the edge of the tub to turn it on?
I was diagnosed level 1 but I am definitely level 2. I'm just so good at masking that I got misdiagnosed as level 1 lol. I personally dislike leveling autism or grading it because we dont do that for neurotypicals. In my bubble you're either autistic or not. There are no levels to be graded no matter the level of extra needs the person has.
I can understand where you are coming from with the labels, but autistic is also a label, and I'm glad I am able to use it because it identifies me authentically and makes me a part of niche group that gets me. I once read that labels create community, and I think that can be wonderful.
@hollyoddly I love being autistic and love being known as autistic.I just don't agree with the levels the medical system gives up. It feels weird to me. I love all autistic peeps and most of my friends and family are autistic too 💕
Mostly in medicine and psychology the primary purpose of the labels is so that appropriate treatments can be given to appropriate groups. With a proper diagnosis for most conditions, like Bipolar, avoids needing to try a bunch of medications that won't work.
So, I agree that they don't fit a loved experience, but at the same time,. it's a handy starting place for someone who is just getting used to the topics.
I feel like it can be difficult to determine the border between support needs levels at times. Some people are probably right on the edge and their need for support fluctuates enough that at times they seem like one level vs another.
For me, I'm not sure if I would be level 1 or level 2. On one hand, my experience is similar to level 1 individuals in that it's more common for people to be surprised that I'm autistic, and I've had people tell me I don't seem autistic. But I've also had people tell me that it's so obvious that I'm autistic, and most people consider me "weird" if they don't put the autistic label on. I am also extremely good with language, very intelligent (in the general IQ way, which I know is an ableist measurement), and I get great grades in school. I am currently in graduate school. And so far, I've demonstrated the capacity to work part-time at a daycare (while living with my parents).
On the other hand, I need more support than a lot of my level 1 autistic friends. I cannot drive because it is too overwhelming and I am unsafe on the road, so I am reliant on my parents, brother, and friends to help me get around. When left to my own devices, I can really only manage to cook about once a week, so I end up eating a lot of leftovers of the one thing I cooked and stuff that I can easily pop in the microwave. While I have done very well in school, I have needed accommodations for extensions on assignments, longer testing time, and ability to use sensory tools during tests. I have just reached the point in grad school where we are shifting from academic classes to internships, and I am on the brink of being dismissed from the program because I could not handle the demands of my internship and had to withdraw. I have basically one more chance with my intervention plan. I am worried that I will not be able to work full-time, and will thus fail out of my program because I am not allowed to complete my internships part-time (it represents a "fundamental alteration" to the program, apparently).
When I was in autistic burnout about 4 years ago, I think my support needs were more clearly in the level 2 category since I had frequent meltdowns, significant hygiene issues since showers were too overwhelming, and frequently lost my ability to speak, which caused me to need to use AAC. I was also unable to mask my expressions and stimming during that period, so it was obvious to pretty much everyone that I was autistic (I didn't get the "but you don't seem autistic" reactions then).
But once I recovered from burnout, I was able to live independently (although I needed people to drive me places and wasn't great at nourishing myself), keep up with basic hygiene, go to grad school, do well with my classes, and mask pretty well. Now though, I'm worried that the demands of grad school internships are pushing me into another autistic burnout...
I was identified as autistic late at age 17 when I went into autistic burnout, and late diagnosis is more consistent with level 1, but I'm also a girl so *shrug*
You bring up a great point that I didn't touch on that levels and support needs can absolutely fluctuate over time. And since intellectual and learning disabilities aren't a hallmark of autism, you can be very intelligent and have higher support needs. The way I look at is to take it one portion of your life at a time. Like, what are my support needs right now with what I'm going through currently and in the near future? Sometimes that helps me figure out exactly what I need and make a plan.
I’ve done the same with certain songs and fallen into random things that I like to follow like drift music and drift car racing. I wish I was diagnosed, but I have chronic PTSD and it’s always been in the forefront. ❤ I really appreciate your content.
I fit the description of level 1, but some aspects are more level 2, like the extreme interests and the emotional difficulties when interrupted mid-task.
I don't walk off in the middle of a conversation, but I have had to learn to not just walk away when I thought the conversation was over. I'm still not sure what I'm supposed to say, but I know I'm supposed to say something.
And my coworker knows I'm really OCD because of rigid or inflexible behavior. He knows an autistic person and I'm not exactly like that.
Romantically, I seem to be closer to level 4. I've made it to 64 without a serious relationship.
Overall, I think support levels may be more specific than the current understanding. Individual traits might be at different levels in various aspects of an individuals life.
Overall, I would say my lifestyle is currently level 0. Few people were diagnosed as autistic when I was growing up, so I had to learn to do it all for myself, however difficult it was.
Maybe I just became my own support.
Ah, yes! I was told I had OCD tendencies because of my rigidity. I am also very inflexible, so I know how you feel. Are you happy to not have relationships? I know a lot of autistic people are.
@@hollyoddly
I'm more resigned than anything else.
I wanted to get married and have a family, but I have trouble making connections.
I have a good life, just the same.
As a parent of a level 2 autistic child this video was very insightful. When you talk of death as a parent i get very panicky when i let myself think to much of what will happen to my son if my husband and i die before him, which is the more natural progression. It is not that i want to live longer than my son because the thought of him dying also is something i cannot bear to think about, but if he did i know his whole life he would be safe.😊
Very important video. Thank you for sharing this.
Thanks Holly you have great points here.
I've been assessed and diagnosed with ASD and ADHD but not given a support level. Perhaps they don't use them in the UK? How do i work out what support level.i am?
I also don't think the UK uses support levels. That's kind of what I'm touching on here is that's it's confusing and hard to know what support level you might be. The information out there really isn't very helpful at all. If you resonated with what I said, you might be a level 2. If you don't feel like you need quite as much support as what I talk about, you might be more level one, and of course if you think you need even more, you could be level 3. I'm not a doctor, so I can't really give good advice around this, unfortunately. I do hope someone else who has some good resources might also comment to you here, because I haven't not be able to find useful resources.
I was also diagnosed in the UK, and not given a level. I was told it would be different in different circumstances and according to how much stress I was under. Friends had similar experiences and it sounds like levels are not always used in the UK.
When I asked why I got level 1 and not level 2 which I honestly feel would probably fit me better, the answer I got was that I could live independently and not at a care home or with my family. So the levels are to me extremely arbitrary and seems to vary country by country. It is possible I may have gotten level 2 in the USA simply because I am not very good at masking (I struggle with eye contact among other things that makes it more visibly noticeable), but I got level 1 in Sweden because we have a much more developed welfare system where people who can't live independently live at nursing homes, which seems less common in USA, likely due to costs. Whereas here people live there for free. If you have to live at a nursing home, you are likely to be considered very disabled in several areas of life whereas for me, I feel quite disabled in some areas but less so in others, which makes it possible for me to live independently and work, even if that comes at the cost of heavily compensating in other areas I am less capable in.
oh wow, I may actually be level 2 as well
Hello, and welcome! It never hurts to ponder on how much support you might actually need because then you might be closer to articulating your experience to others and possibly getting some of that support...though that part is always easier said than done!
I’m so glad the algorithm let me find you! I’ve been looking for more level 2 autistic people to subscribe to. Hello! Super weird the level description isn’t actually based on specific support needs… who wrote these!! (Rhetorical)
You nailed this 👏
Thank you so much!! I was very nervous to put this out!
I'm still undiagnosed in my forties but certain I'm autistic and now thinking level 2.
Getting diagnosed can be really difficult for so many reasons! I think it is good that people are able to self-identify as autistic and understand what their needs are.
Thank you so much. I am unable to get a diagnosis from my hmo because of my age, but I think I might be level 2. This video really helped.
My daughter is level 2, age fifteen, and i worry for her future especially after I'm gone.
I know that's scary from your side, too. I know I worry, but my mom and my husband worry a lot, if something were to happen to them before me. I wish there were more resources where adults with more support needs could have a place to be safe and taken care of. On the Australian "Love on the Spectrum" I saw one person was in a nice group home for adults. There just isn't enough out there like that. ❤
I've got a huge vocabulary, I'm incredibly intelligent. I listen to audiobooks as I'm also dyslexic. There are a lot of things I need support with that i can support others with. I'm a teachers aide and support students in all kinds of ways some of them I need support with when I'm doing the task.
I'm level 2 Autistic 54yrs old woman. Late diagnosis of 2023. I wasn't recognised with ASD in my childhood in school. And due to my Serbian background, there's a blind eye to being different. Serbs consider everyone "normal" and if you tell them that no one is normal, you will get a huge argument. In my case, I got slapped on my face by my Tata (father). So there's a huge stigma in my Serbian culture about being "different".
I ran across a post in rededit about a guy in Serbia 🇷🇸 who was diagnosed level 2 Autism. He said that only level 3 Autism is only ones that get recognised in Serbia and he's yet to met or chat to another Serb with level 2 Autism. If you search, you will find that chat with me, Bozana.
Thing is, Serbs live with so many Autistic people around them, that they don't see it and consider it normal. Nikola Tesla fir sure was Autistic and so was Mara, Einstein's ex-wife, was Serbian but I bet my bottom dollar she was Autistic too.
A lot of Serbs are OCD to the extreme and over sharers but some of them also hide it with some dry humour.
As for me, I live in Cairns, Queensland, Australia and was born in Australia... but that didn't help me to get a diagnosis during school years. I was called LAZY.. They put me in "special education side classes" and that's when they called lazy. I just wasn't interested in what they were teaching. I was BORED! I was also bullied, abused verbally and physically bashed at school. It was until i was an Adult that I did what I always loved, is computers. I'm a Network Engineer, Systems Analyst and 3D animation with motion and movies but I never could get the job, despite being the very top of my class.
HAD I known I was level 2 Autistic, I would've had more support my earlier... Just my Serbian culture and background with my parents were obstacles.
I'm currently on a pension with home support from my Australian government from NDIS.
Also, my mum has dementia and she's undiagnosed Autism. And there's a huge link between Autism and Dementia.... I think I'm showing early signs and I'm going to get myself tested.
Thank you so very much for making this video ❤💐🌸🌹
About being an outlier, I have dyslexia but especially as a kid I enjoy reading, just very slow. But it also affects my language learning skill, but I love languages.But by pur immersing myself in the english language to do the internet and Tv shows, I became very good. And now I am on the path to learn japanese, it is a slow process and I never be able to reproduce most Kanji but its okee as long I can have conversations and understand it, I would be more than satisfied
I got diagnosed this year at age 28. The psychologist giving me my feedback and diagnosis, agreed that I’m between levels. I fluctuate. So she cannot accurately give me a support level. But gave me level 1 despite that agreement.
I really don’t believe I’m level 1. I do believe I’m level 2. The only reason I believe that I could come across level 1 is because of the support I do have from my fiancé and our families.
In addition. Great video 👏🏼 I love hearing your experiences. We really need these videos. Thank you
Myself, my daughter and my brother will all go down if my mum dies before us 😢
I know how you feel. It is very hopeless and frightening! 🖤
I am not sure what level I am, I am Gen X and not diagnosed. I believe that both of my sons, 18 and 24 are about a level 2 as well as my elderly Mother who I have been supporting since I was 15. She can’t drive, doesn’t take care of herself, doesn’t pay certain bills, has strict routines, and doesn’t do housework unless asked to. It’s a lot to deal with on a daily basis for an AuDHD person. I think that I have been in burn out for at least 25 years.
This is so interesting! I think I can come across as disingenuous because I have to think a lot and rephrase so as not to seem too rude or direct or indiscreet to NTs.
Yes! And I also script all the time. I think this makes me come off as disingenuous, too.
One song, my tears ricochet from folklore again, and again, and again and again, and again that doesn’t make me a Swifty, but it could make me autistic 🤷♀️
Or it could make you heartbroken over a situation or person! That's a sad song, but I really like it! I'm diagnosed as autistic for meeting all of the criteria of autism, so I think it had to do with a lot more than my intense interests and repetitive nature, though that played a part because it's in the DSM. I feel like I would be a disgrace to Swifties if I called myself one because they probably listen to more of her music, know things about her, buy her merch, go to her concerts etc.
Hello I have no level bc in the uk but i have moderate support needs. (I am 16) i need help for doing some to most bADLs (help ranging from verbal to hand over hand prompting as well as other support like supervision etc) and my mum does my iADLs for me mostly. I also cant leave the house on my own and have significant difficulties in social interaction and restricted repetitive behaviours and i cant go to school currently (we are getting an ehcp soon hopefully it will help). I also likely have autistic catatonia which has caused me a lot of issues. It is nice to find a level 2 person on youtube as i havent found many people on here sadly.
Being 16 is so hard, even without having moderate support needs, so it can be unimaginable for people who do. I wish there was more of a support network for autistic people to see each other! Just having someone around who is your age and knows some of what it is like would be really cool. I hope you feel like you get the support you need!
@hollyoddly yes. I also want there to be a support network for autistics to see each other that would be very cool! For me it is challenging due to my needs to access stuff like we tried an sen group but I had to leave but I hope soon I can find somewhere. My needs are somewhat met, better now than used to be. ☺️
I hate showers I don't like being sprayed with water. On a practical level I find manipulating the mixer to get it to the right temperature is... much harder than it looks.
I find the support needs level system so unhelpful and I am glad we don't have it where I live
like factually I'd be level 2 but also I am so toxic about myself that I feel heavy autistic impostor syndrome whenever support needs come up because literally the only thing I need to get through life is minimum revenue without having to work (which you get no matter the 'severity' of your disability here in france) and I can just poorly cope around everything else
Do you know what you would have been diagnosed with under DSM-IV?
I don't. No one discussed the DSM-IV with me.
My level Two plus loads of comorbities has been overshadowed by level 3s it means I don’t get all the support I should be
Level 2 masked and interpreted as Level 1 for sure well I was diagnosed aspergers then just ASD but levels were never discussed at that time
I'm definitely needing much higher support than I ever have got especially since I have been burnt out and essentially a complete agoraphobe unemployed for many years now I think I really did not get the help I needed at the worst times and now it does suck that I don't even know what those needs are other than they were never truly met
I'm always working on trying to understand what makes me the way I am; I think I was treated as if i had normal development when i was actually very very far behind and developed very irregularly and unhealthily and I'm certainly not well adjusted as an adult now
I'm so sorry you didn't get the support you needed! I was pushed way too hard in school, and sometimes my parents basically did my homework to get me through. This make me look less behind to people who didn't live with me and see my struggles. I think my parents really were afraid of me falling behind, when I actually think that would have led me to getting the proper support earlier. Employment is a huge problem throughout autism, and you're completely right that burnout is a problem that causes stability and skills to drop. 🖤
I feel so confused, and I just don't know anymore.
I'm level 2. Hi!
Hi, hi, hi!!
.....Thank you....🔥✨️
Top 0.5 % of no such thing as a fish listener last year with an account I made in August because I missspelked my email and needed to subscribe to premium for the podcast because I was camping
Massive interest in books / language,,
I'm still on the wait list no idea what leval i might be because I also have a brain injury
SETD5 syndrome I am a a level 1 and level 2 it depends
❤ your videos r great
Hi! Former BCBA, personally multiply neurodivergent. I am diagnosed 2e (G and T, "HSP", and adhd). Girllllllll! We got so much WRONG wrong about this topic. I can tell you damn straight where all your L1 are hiding: they don't they are neurodivergent. Autism is not Autism (its a collection of traits like you said) symptoms are nearly traits that are inconvenient to the "documemter", really truly. If you want to know where the L1s are, I will tell you they ARE the g and t community and nobody will say that out loud because tthe level of missed off people will be if we actually told the truth.. ALL, and I do mean ALL, is.born from trauma. It is caused direct, indirect , and epigenetic trauma layered together 😊. I can prove it too. If yyou wanna know more, kid you not, come sing this way and I will tell you all I know, and all I think I know. I don't want to sell a thing. I just want to make my world a better place by sharing what I know. Blessings to everyone who finds and reads this.