This is a really important issue, thank you Aneva for making a video about it! I am level 2 but was diagnosed only a year ago at age 37. So someone can be both higher support needs and highmasking late diagnosed. The toll that takes is hefty and I am in complex poor health now because of it. It has disabled me in many, many ways (although I wouldn't be "cured" of it if that was offered to me. No way. It's who I am, and it may be my challenges, but it is also my magic💫). But my experience is not that of someone who was identified at a young age/who's autism is much more outwardly obvious/doesn't or can't mask/with higher support needs than mine, etc. I too am concerned about what's happening within our community. I get a frustrated with the recent cutesy tik tokky autism videos, I feel like they often minimise the depth of struggle we can have and also the depth of our rich inner worlds and unique personalities, thoughts and feelings. And just our depth in general. And yes often does not include the voices and experiences of those who are in quite a different demographic than the late diagnosed who make trendy videos and communicate well. Even those videos themselves aren't very accessible to many Autistic people because there's like irritating music playing, written words (like sometimes huge paragraphs) flashing up all over the screen as well as the person themselves either talking or miming lyrics that aren't actually the same as the written words, plus the automatic subtitles, graphics, etc etc all happening at once in a very short video. Perhaps they do it because it requires rewatching many times to take it all in and that equals more views. Or perhaps they genuinely don't realise how inaccessable that is to many of their fellow Autistics (and I'm sure other conditions too). I guess perhaps it's a combination of the rise in people realising their diagnosis, exploring that and finally feeling a sense of belonging that many of us haven't had our whole lives (and so pushing what's trending within the community in order try and feel that belonging) and in general late diagnosed finding their voices, identity and representation (especially this lost generation of un/late diagnosed girls and women) etc, and the cheesy tik tok style of communication at the same time that's so prevalent online in general (I don't have tik tok but have seen them on KZread compilations). And yes also an aspect of internalized ableism that really needs addressing I think. Like for example someone in a late diagnosed Autism fb group I'm in shared about not being able to drive (a common experience for those of us with higher support needs) and most of the responses were pretty much telling them they can if they try and it was so disappointingly ableist and totally disregarding the experience and reality of so many of us with higher support needs. Like, many of us don't/can't drive and never will and that is okay. That should absolutely be okay, understood and accepted within our own community of all places. While it's vital that we're connecting, sharing and discovering with each other, etc it's also got this super unhelpful side and I think we all need to be aware that in communities it's often only the loudest voices that get heard, and they're not always reflecting the experiences of others within the community. Especially those who often struggle to communicate by their very nature. I should very much like to hear from those of us who don't speak for example. And those of us who perhaps would benefit from the help of others in our community to express their experiences. Like those who are dominating the online/tik tok world could definitely strive to amplify those voices who are not being included/heard. Interviews/collaborations with high support needs folk for example. Or even just videos speaking on it like this one and sharing more videos/content made by and about higher support needs people. Our community needs to reflect on this and how inclusive we're actually being and remember those of us who may feel left behind, not reperesented or misrepresented by these loudest voices who could do with asking themselves: will this next video I make benefit and be inclusive of those of us with higher support needs? Am I speaking for them too? And if so, is what I'm saying accurate for them? What can I do to find out and include, uplift and share those voices and their experiences? etc etc. A movement around this would be really good. And it may also help to ease the trendy quirky cutesy thing that's been happening that's personally not sitting wholly well with me. Like I'm all for people taking ownership and empowerment and celebration of their conditions, etc. That is a beautiful thing! But not at the detriment of the community not being taken seriously and/or many of us being not included within our own community (I really dislike that because haven't we pretty much all had way too much rejection and exclusion already?! Let's not do that to each other too). I wonder what sort of movement within our community would help shift this and include the reality of many that is being left out.. Need those big voices on board to collaborate with other voices and speak on this. I'm so glad you are using yours to do this! Love and appreciate you Aneva (and love your eye makeup too! 💖) Edit for the sake of demonstrating my reality as a level 2 Autistic person: This comment has taken me almost two hours and a huge amount of energy to create and many many re-reads and edits to get what I'm trying to express to be as clear and correct as I can. Both verbal and written communication does not always come as easily as it appears and that is part of my spectrum reality ✨ Edit again: I burnt out from doing this. I'm not complaining, just explaining those limitations that are so easily not seen in our community at the moment

@Aneva

10 ай бұрын

Annie I cannot wait to respond to this when I get time. I love that you’ve taken the time to share this. I’m pinning your comment 💗

@annienamaste8283

10 ай бұрын

@@Aneva Oh thank you! I'm honoured! 💖💖

@rahbeeuh

10 ай бұрын

It's very rare that I come across another LVL 2 Autistic person. The parts of your response that registered were very excellent points. It takes me forever to retain information so I may have to revisit when there's less cogfog (someone recently used that instead of brain fog and I liked it enough I've been using it when it applies). I really hope there's a push or shift for more versatility within the Autistic community bc for a long time it's been seemingly like an awkward seesaw. Just yesterday an Autism mom™ told me there's only the mildly disabled or profoundly disabled and I'm like, _NO! Absolutely not!_ That is a false dichotomy (that's the word I spent too long tryna figure out) and it ignores those of us who are in-between. That is one reason functioning labels don't work nor are they accurate and imo no one should be using them. They were only ever meant to be used in the clinical sense anyway not for laypeople. Anyhoo, sum'n has to change bc we cannot continue onward the way that we have as a community. It'll eventually hurt the most vulnerable of us all (level 3 Autistics). I also related to the part of your response about not driving. Some of my family members had such big plans for teaching me to drive but it didn't happen. I've made peace with the fact I prolly won't ever drive and it's okay. One less person contributing to air pollution, I s'pose. I know how easily merely commenting can zap ya of so much energy...pls take care 💛

@Aneva

10 ай бұрын

To stay organized, i'll quote you and respond! (this is probably is easier to read on tablet/computer). It's formatted so i can read it without getting overwhelmed. Hope it's not distracting/overwhelming to read. ______________________________________________________________________________________________________________ "I am level 2 but was diagnosed only a year ago at age 37. So someone can be both higher support needs and highmasking late diagnosed." - (Paragraph 1) 🚀~ 🚀 It's very important that you shared this. I very much so did not really understand that there is a mix going on. That High Needs ≠ Low Masking Ability & Inability to Verbally Communicate. I VERY much so needed to understand that it's not that black and white, and it's not like a "checklist" to check off. I think a lot of us understand things on paper, but haven't had much exposure to other people who have different needs than ourselves. ______________________________________________________________________________________________________________ "(although I wouldn't be "cured" of it if that was offered to me. No way. It's who I am, and it may be my challenges, but it is also my magic💫)" - (Paragraph 1) 🚀~ 🚀 THIS. This is a very positive outlook, and I know it gets hard, but it is very appreciated to me and others that you displayed your gratefulness for who you are. I know that we have all had those times where we felt so much pain and shame and frustration about who we are- with the pressure to like ourselves because we've always been told we needed to. But to the people reading and watching- there always has to be a display of hope and positivity to add balance, and I value that a lot. ______________________________________________________________________________________________________________ "I get frustrated with the recent cutesy tik tokky autism videos, I feel like they often minimise the depth of struggle we can have and also the depth of our rich inner worlds and unique personalities, thoughts and feelings." - (Paragraph 2) 🚀~ 🚀 They definitely do- I actually read a post on Instagram making the point that TikTok's algorithm pushes videos that are fast-paced and "to-the-point" or high-energy and captivating. It doesn't prioritize videos that are more educational and easy to process. I do think TikTok is just not the place AT ALL to get much real education on autism if someone wanted a realistic view of it. Hopefully that changes! ______________________________________________________________________________________________________________ "Even those videos themselves aren't very accessible to many Autistic people because there's like irritating music playing, written words (like sometimes huge paragraphs) flashing up all over the screen as well as the person themselves either talking or miming lyrics that aren't actually the same as the written words, plus the automatic subtitles, graphics, etc etc all happening at once in a very short video." - (Paragraph 2) 🚀~ 🚀 This is another important point. I think that a lot of us get caught up in how we individually process information. For example, I may not have an issue with reading, so I'd base how long the text is on the screen on how fast I can read it. I really needed this brought to my attention. I think we should keep in mind that we are trying to make our content accessible to other people on the spectrum and that many of us also have comorbid learning disabilities and sensitivities. ______________________________________________________________________________________________________________ "Like for example someone in a late diagnosed Autism fb group I'm in shared about not being able to drive (a common experience for those of us with higher support needs) and most of the responses were pretty much telling them they can if they try and it was so disappointingly ableist and totally disregarding the experience and reality of so many of us with higher support needs. Like, many of us don't/can't drive and never will and that is okay." - (Paragraph 3) 🚀~ 🚀 I think internalized ableism is definitely a problem. I can confidently say that it affects me, and i'm sure a lot of other (especially late diagnosed) autistics. So many of us have been told that our problems aren't real, and it really is unfair for us to project that onto others. Maybe a video about this is in order! ______________________________________________________________________________________________________________ "-in communities it's often only the loudest voices that get heard, and they're not always reflecting the experiences of others within the community. Especially those who often struggle to communicate by their very nature. I should very much like to hear from those of us who don't speak for example." - (Paragraph 4) 🚀~ 🚀 You're right. And a lot of us have had experiences that have not been as debilitating as some of our counterparts. I too would love to hear more from our diverse community! I'm hoping that this discussion we're having really encourages us to be more open and very receptive to new opinions and stories/perspectives. ______________________________________________________________________________________________________________ "Like those who are dominating the online/tiktok world could definitely strive to amplify those voices who are not being included/heard. Interviews/collaborations with high support needs folk for example. Or even just videos speaking on it like this one and sharing more videos/content made by and about higher support needs people." - (Paragraph 4) 🚀~ 🚀 This is very feasible. Everyone should be a part of the discussion, and everyone on the spectrum should feel welcome and included. I hope to make that more possible now that I've seen how needed it is! ______________________________________________________________________________________________________________ "Our community needs to reflect on this and how inclusive we're actually being and remember those of us who may feel left behind, not represented or misrepresented by these loudest voices." - (Paragraph 5) 🚀~ 🚀 I feel like once this message gets around to those of us who are publicly representing this community, things will change VERY quickly for the better. ______________________________________________________________________________________________________________ "Like I'm all for people taking ownership and empowerment and celebration of their conditions, etc. That is a beautiful thing! But not at the detriment of the community not being taken seriously and/or many of us being not included within our own community ." - (Paragraph 6) 🚀~ 🚀 YES. It's had alot of negative side effects, sadly ______________________________________________________________________________________________________________ "Need those big voices on board to collaborate with other voices and speak on this. I'm so glad you are using yours to do this! Love and appreciate you Aneva-" 🚀~ 🚀 I'm so excited to continue in the right direction and I can't wait to collaborate with others !! Right back at you Annie !! ______________________________________________________________________________________________________________ "This comment has taken me almost two hours and a huge amount of energy to create and many many re-reads and edits to get what I'm trying to express to be as clear and correct as I can. Both verbal and written communication does not always come as easily as it appears and that is part of my spectrum reality ✨" "Edit again: I burnt out from doing this. I'm not complaining, just explaining those limitations that are so easily not seen in our community at the moment" - (Final Paragraph) 🚀~ 🚀 You're definitely not complaining, you're expressing a reality, and WE appreciate the time and energy and attention to detail you put in. Every time I see long comments, I just KNOW how long they took and how much effort went into writing it. I hope that many many people read and engage with what you've shared here. ______________________________________________________________________________________________________________ 🚀~ 🚀🚀~ 🚀🚀~ 🚀🚀~ 🚀🚀~ 🚀🚀~ 🚀🚀~ 🚀🚀~ 🚀🚀~ 🚀🚀~ 🚀🚀~ In conclusion, what you've written is very well communicated and VERY helpful. Thank you so much, as always. Take a break and get some much needed rest/silent time. Have a great week Annie!!

@annienamaste8283

10 ай бұрын

@@Aneva Oh my goodness thank you for your response and all the care and thought in it 💖 I'm not well enough to reply any more than this right now, but I just want to say I love everything you said and appreciate it and you, and the feeling of being heard, all so very much. Thank you immensely for taking the time and energy to read though my comment and respond so considerately. I'm so touched and uplifted by this 🧚🏽‍♀️💕 I hope you have a great week too!

Hi!! Im lower support needs autistic and recently diagnosed. Based on just the fact that I can relate loads to almost every video on autism i see on here, i feel we as a community are not valuing the voices of higher support needs autistics as much as we should. I should not be able to relate to every video, what i see online should reflect the diversity of the spectrum.

@Aneva

10 ай бұрын

thank you so much for sharing, I agree! We all have had such different experiences, and I think so many of autistics are not getting the support and acceptance they deserve.

@SmallSpoonBrigade

10 ай бұрын

To some extent, that happens for the same reason why the twice exceptional and high-masking contingents got screwed over with the DSM 5 diagnoses. It definitely is in all of our best interest, as well as just ethically correct, to try and pay more attention to them and make sure that they have as much of a seat at the table as possible so that we don't get a repeat of the DSM 5 with the ICD or whatever fills the role that the DSM 6 would have.

I was diagnosed as a child with Aspergers. I am extremely supportive of early diagnosis and I think it changes so much, however it doesn’t fix everything. I think a lot of late diagnosed adults think that if they had a diagnosis earlier then things would have gone smoothly. I think it is very helpful but far from smooth. I am/was very high masking and have struggled to accept myself and the real me. It’s a learning process and it’s different for everyone. I’m so thankful to have my early diagnosis but I still struggle and often feel lost.

Yeah, things are blowing up in all kinds of ways. There’s actually lots of in-fighting with the late diagnosed and the early diagnosed and now self diagnosed autistic individuals are being clumped in with the overt fakers. But then there are those who have concretely “self diagnosed” who clearly are not on the spectrum - the ones who seem to believe ASD is a quirky subset of traits and not a neurological condition (or so I’m told). According to autistic individuals I’ve spoken to, these individuals are actually young and impressionable students “diagnosing” themselves after some videos on TikTok and they are on college campuses trying to get accommodations - and this causes friction and upset because others feel they are just “jumping on the ASD” train because it’s trendy (not to mention to get accommodations you need a diagnosis etc ) - much like the whole OCD and Tourette’s Syndrome fakers that we’re exposed on KZread + TikTok years ago. And of course, through all this, non speaking ASD individuals or those with higher support needs are truly left in the dust. It’s an unfortunate thing. Social media has been a blessing when it comes to conditions like ASD, ADHD + but like anything, stuff just eventually gets out of control. There are lots of ASD forums and such online that I just avoid now or have eliminated altogether because it was so negative and very ignorant - they are battlegrounds.

@Aneva

10 ай бұрын

I will be responding to this when I get the time, thank you so much for always contributing to this community!!! ♥️

I'm 30 yrs old just got diagnosed with autism about 6 months ago. For my personal experience, I wish I had the support I needed sooner. The thing is, even before getting diagnosed with autism, I've been coping and learning from being a poc cis female with a chronic life long disease (sickle cell anemia) so my unmasking journey has been an interesting one because I've been trying to digest, accept and compartmentalize whats been *because I'm autistic* or *because I have sickle cell* or a blend of both and acknowledging the ways I have been disadvantage along with the ways I've been privileged. I appreciate that I have gotten an up-close look at how our health care system in america really wasn't made to support certain types of people and I've had experiences that can show how institutions as such are systemically flawed and need a lot of change. But once I was diagnosed with autism as late as I was, it was just another thing to add to my list of *wow ya'll really need to do better* lol because I've been floating through the healthcare system my whole life (this includes mental health services) and no one cared enough about people like me to make sure they were diagnosing properly so we can get the proper care and resources we need. I became very very good at masking, I'll give them that, but my need to mask was a means of survival (I mean that very literally) It just sucks because I do need a lot of help but I never had it and I've beat myself up trying so hard to fit into a neurotypical world and accomplish my goals in the neurotypical way but that doesn't work for me. I thought I was the problem this whole time but I'm not. So I guess I'm speaking as someone whose audible and I can get myself dressed (things like that where my needs aren't high in that aspect) but I still have high needs ....if that makes sense. Ive lived a life of high masking and lying to myself about how much help I need but now that I've actively been working to mask less and be honest about my experience, I'm not as independent as I thought. Even my mom has noted that this whole time I just needed more help and I never got it, but I deserve it. So I'm currently in this state of fighting to receive the accommodations I need and trying to prove that I need them because I'm constantly questioned considering I've become so good at masking.

@Aneva

10 ай бұрын

I really like that you've observed that there will be a lot of "crossing over" with symptoms! Like you probably experience fatigue, which can look a lot like autistic burnout. It can be tricky, but I hope you're taking good care of yourself! YES the list of "y'all need to do better" is very very well known in this community also. I'm very sorry about the experiences youve had with the healthcare system. Isn't it funny that its name is a complete contradiction to itself half the time? quoting you for a second: "I've beat myself up trying so hard to fit into a neurotypical world and accomplish my goals in the neurotypical way but that doesn't work for me. I thought I was the problem this whole time but I'm not. So I guess I'm speaking as someone whose audible and I can get myself dressed (things like that where my needs aren't high in that aspect) but I still have high needs ....if that makes sense." It makes perfect sense. You are not alone. We've been told "you should be able to do this because ____ can" all our lives- so we worked 10x as hard, while also being mistreated the WHOLE way and masked to survive. That still affects us. It's not just in our head that things have been unfair this whole time. But good for you for recognizing that in yourself. Unmasking is an uneasy task. I recommend trying to revert to childhood ?? It sounds silly. But I found myself again by almost "roleplaying" as myself as a kid when I was the happiest. I took out time to remember what I did that made me happy. It won't work for everyone- but it has been helpful for me! Absolute best of luck to you! Thank you for sharing 💛

i’m 16 years old but i love watching videos about autistic adults. im medium support and undiagnosed. i’ve been told everything from im too smart or im too bubbly to have autism. it’s been really hard but i keep trying. the autistic community was so exciting for me to interact with because my whole life i wondered what was wrong with me, why was i so different and now i found a place that made me feel good about being different. but the more and more i interacted with it, i started to realize, the autistic community is very restrictive despite being a community built on differences. i saw all these diagnosed white people who were able to mask all their traits and come off as completely normal. i would always say “masking isn’t a privilege!” because that’s what i heard from others but it very much is. once, i talked about how there isn’t a fine line between “using your disability as an excuse” and using your disability as a explanation and i used an excuse of someone having violent meltdowns and hitting someone and the response i got was sad. in their defense, the way i phase it was wrong but they said “i get violent and i’ve never hit anyone” as someone who has hit people during their meltdowns, i felt so guilty. when i have meltdowns, verbal communication is not an option for me. despite being hyper verbal, making meaningful connections and understanding social situations is hard. so my only means of communicating is actions and when i’m overwhelmed and my attempts of saying “get away, leave me alone” are not being understood, i push people away. literally. i don’t full on beat people up but i have hit people. afterwards, i say sorry, explain my thought process and happily, i haven’t hit anyone in a long time as my family understands my means of communication. all autistic people are different and that’s okay. being disabled is lonely, sad, painful, uncomfortable and that’s okay. but people don’t want to accept that online. it’s very upsetting and i love your videos. i actually found you on tiktok and just found out you had a youtube channel. one of your tiktok almost made me cry because it perfectly describes my experience. you are amazing and it’s nice to see another black autistic creator speaking up about the issues in the autistic community! (＊＾＾＊)

I was diagnosed at thirty-one despite being a white male. Since then I haven't been able to shut up about my diagnosis to the point that I'm just going to have to make a career out of it. If I had a quarter for every time I've been told "But you don't look autistic" I'd have exactly one fuckin' quarter. I had to crawl into their DSM, analyze their description of what it means to be autistic" and realize that a shitfuckton of internalized ableism prevented me from even finding out what an "autistic trait" actually was. Thank you for learning about your condition and having the instinctive reaction of "Well I wanna help out people in a similar boat, even if society wants to tell them that I'm on a high-performance motorized boat while someone else is paddling as hard as they can in their rowboat. We're still in the same river full of shit and we should all be concerned for each other and how, if possible, we can help one another." Maybe try to stay away from TikTok a bit. I've heard thirty minutes of your content and you're obviously one of the "good ones" who has a lot to contribute. I for one am on the road to getting a PhD in clinical psych so I can address a particular niche category of the autistic population: Adolescent/adult autistics who are processing the trauma they experienced and in what ways that it has or is rolling into their adult lives.

I think a lot of late diagnosed folks have internalized ableism and could benefit from the wisdom of those who were diagnosed early. I don't think that it is unique to the autism community though. I don't like the idea of stepping aside for those who have more needs. We definitely should amplify their stories. Having a small need unmet is not insignificant. It is a need. If you need a lot, but it can be easily met then it can be taken care of. Some small needs are very hard to meet. Sometimes it takes years for small unmet needs to catch up with you.

@Aneva

10 ай бұрын

Hi! I think you’re right, we definitely have internalized ableism. I know it’s because we’ve been told to tough it out so many times. We absolutely should find balance here. Although there are cases where stepping aside means losing support for ourselves, I think there must be a win-win situation. I hope we can find the strength to not back down on our own needs. Because just as you said- our “small” needs DO add up when they’re not met. Thank you so much for your input ❤

@SmallSpoonBrigade

10 ай бұрын

@@Aneva It's a matter of perspective. I don't think that the oppression Olympics is something that benefits anybody. But, that being said, I do think it's worth keeping in mind that not everybody is equally affected by autism and that even within a particular person it can be rather tricky to really know how much of an impact it's had. In a sense, you were quite lucky that you were able to hit early adulthood and then find out about it. So much of the best, and the worst, of my life is tied into a diagnosis that I may never be able to achieve due to the hysteria over the "overdiagnosis and overtreatment" that's allegedly going on. I got to pass as NT by pretty much obliterating all the things that made me me and avoiding too much contact with others, and by ensuring that nobody in any of my circles of friends came into contact with each other. In other words, I don't entirely disagree with what you've said, but I do think that it's important to keep in mind that there is no such thing as mild autism for a reason and in some ways the folks that don't find out until they're much older pay an extraordinary heavy price in terms of the things that we could have had, if we could have spent the energy on pursuing our passions and supporting ourselves rather than on the various undiagnosed autism related taxes. I wish that it was as simple as support level and how long you could go without being diagnosed, and that was that.

@Aneva

10 ай бұрын

@@SmallSpoonBrigade - Because of how things are going in our community and how things look from the outside- people are less likely to take undiagnosed adults seriously. It was one of the realities that made me want to speak on this topic. - Autism looks soooo different in every person, (because we are still unique individuals.) But because it has been advertised as something "fun" or "popular" to have, many common-folk have decided to take us less seriously. This happened with ADHD, OCD, PTSD, DID, BD, and Schizophrenia just within the last few years. This is in no-way our fault. I do think it will calm down, but as of right now- most people are seeing "fake disorder cringe" on TikTok and applying it to every autistic who seems to have low-support-needs that expresses they're autistic (or might be). And that sort of "advertising" trickles up to parents and professionals. It's not fair, and it doesn't at-all help undiagnosed autistic adults. "there is no such thing as mild autism for a reason and in some ways the folks that don't find out until they're much older pay an extraordinary heavy price in terms of the things that we could have had, if we could have spent the energy on pursuing our passions and supporting ourselves rather than on the various undiagnosed autism related taxes." - I agree that there is no "mild autism". But I do believe that the severity of autism exists in how debilitating it is in (at least for this example) a more physical sense. So maybe for example, I could suffer severe depression as a result of the daily mistreatment due to how I am different from others. But another autistic person may have frequent and outwardly emotional meltdowns that they cannot at-all control. Or they may immediately h*rt themselves to cope. On top of that, they too suffer from depression due to how they are different from others. I wrote this dehydrated so please excuse the repetitive words and simple example. So while I don't think the term "mild" should be used- I do think that some of us have more debilitating "features" of autism that are more "visible" and require physical assistance, if that makes sense? Thank you for your input! I really appreciate new thoughts/opinions

@SmallSpoonBrigade

10 ай бұрын

@@Aneva Thanks, I think that this is just inherently tricky. The solution is that there should just be a lot more resources in general and that those of us that are fortunate enough to be able to work, even if we're underemployed, should seriously consider giving a bit back to charities that help advocate for those in the community that are less able to do so. My personal suspicion is that when the DSM IV came out with much better coverage of what used to be called pervasive developmental disability that suddenly Baader-Meinhoff kicked in and all of a sudden it seemed like there were all these autistic people out there, when really we were always out there, it's just that nobody was paying attention. Then the next DSM took it all back in a way that was problematic without providing any alternative to the people that still need to the help, but no longer qualify for anything as they couldn't be bothered to include something for folks that aren't overtly stimming, whether or not we would if we knew of the benefits, and can get by in a social context or didn't show enough signs early enough in life for it to be "neurodevelopmental." The DSM IV had provisions that cover it, PDD-NOS and AS weren't perfect by any stretch of the imagination, but there should have been more research to tell us that AS wasn't a separate thing from other ASD. And the same goes for Schizoid Personality Disorder where nearly all the schizoids out there that haven't already been moved to other diagnoses, are pretty much just alexithymic autistic people who deserve an appropriate diagnosis too. I think that autism is often times just hard, but I think for practical reasons it would make a lot of sense to split the diagnosis based on the age of identification as much as the support levels, just because those of us that were able to mask longer are probably lower support needs, but also more traumatized and in some respects harder to provide care to. I generally have verbal communication, but I have suppressed so much of myself over the decades trying to get by that I wouldn't even know that I'm autistic without the videos that people were putting out. Just giving the doctors the ability to specify a support level, masking level and/or age of identification as part of the diagnosis would likely help a lot of this get better for everybody . The status quo is better than function labels, but doesn't cover cases where somebody might normally function OK, but have days where even just basic things like taking a bus or crossing a street are too hard for autism related reasons. I do think that things will get better, but only if we do as you're suggesting and remember that there are people with different experiences and try to figure out how to advocate for more research, awareness and funding for everybody. It is a tough call in some ways because the costs of not providing service to higher masking individuals isn't as obvious, but it's still expensive to have people that are unemployed or underemployed that could be working more effectively. And that doesn't even get into the issues associated when the diagnosis intersects with various cultural groups that have different ideas of what people should and shouldn't be doing. That just gets messy in a way that I can't even fathom.

@rahbeeuh

10 ай бұрын

​@@Anevathe DSM-4 shouldn't have ever split the Autism diagnostic criteria into subcategories in the first place. That messed up so many things. Research over the years has suggested the traits present across the subcategories had very little differences to justify separate diagnoses. There was information out there that AS wasn't any different from Autism. Lorna Wing thought it'd be a good idea to add AS so that those with "mildly" presenting traits would be identified and their parents would be more accepting of AS than Autism (bc of the stigma that comes with the latter). We shouldn't go back to subcategories at all. That's not gonna get us anywhere. The way things are set up (or at least in North America) it wouldn't be beneficial for any of us to have separate diagnoses. We've been there before and they didn't work. If you're not familiar with Dr. Grunya Sukhareva please look her up. She had extraordinary work that remained relatively unknown and kinda still remains as such. Her research nearly 100 years ago is similar to the criteria we have today but it's worded in a more neutral manner instead of specifically deficit heavy. Idk the answers but I know it's not to be separate.

I appreciate the younger generations who are late diagnosed coming out about this topic. Imagine being twice your age before being properly diagnosed. So jaded from the experience. But I find videos like your are uplifting. And a lot of girls in the 80s and 90s were misdiagnosed and improperly medicated for mental illnesses that they didn't even have. Sorry, I am still waking up and now choking on my water. But I think I made sense...

I find it upsetting when my sister's friend tells me,it's ok that your different. She always comments on what I do,and says those are signs of autism. She makes me uncomfortable when my sister brings her to my house. I feel like I missed out on a lot of things in my younger years. I have always been a quite person, and not good in social situations. Sometimes it feels like a struggle just to be get through the day .

@Aneva

10 ай бұрын

I don't want to assume- is it uncomfortable because it feels like she's pointing out what you might feel are flaws? And I also didn't want to assume you're autistic either, or if you've been unsure/figuring it out! Even without that context, it's very understandable to feel that way about someone watching the little things you do. Every day can be a struggle, and the reality is that it IS a struggle. And it sucks, but that's why support and TRUE understanding is necessary. I do hope that you are able to communicate effectively to her how you feel- if that's something you'd like to do!

@michaelxz85

10 ай бұрын

@@Aneva She is self diagnosing me because her sister is autistic. All I know is I never fit in with neurotypical ways.

@Aneva

10 ай бұрын

You've brought me to the idea that we shouldn't force a diagnosis on someone- I don't think i've had input like this yet. It's appreciated. I do hope things will be okay @@michaelxz85

@SmallSpoonBrigade

10 ай бұрын

@@michaelxz85 It's worth considering, if it is impacting your life, especially if you realize that you're doing a lot of masking. But, keep in mind that there are other reasons why you might not fit in with NTs that are ND and some that aren't. ADHD, as an example, can look very similar to ASD as can Schizoid Personality Disorder and while they probably both should be on the spectrum, they aren't formally recognized as such. Although both of them are extremely difficult at times to reliably separate from ASD. ADHD+ASD Traits can be extremely hard to tell from ASD and honestly, the difference is probably not that significant.

CPTSD is highly prevalent in people with autism and even higher in late diagnosed and misdiagnosed individuals. And people with ASD also have a higher rate of SH and unaliving. Plus, ASD can present differently because of other co-occuring diagnosis.

The make-yourself-small impulse of “don’t take the resources, look at the bad actors trying to take resources away” undermines a more important factor. Cohort size. If you want real substantial changes in systems to make them more accommodating to autistic needs, the spreadsheets used to design those systems need to imply an appropriately large impact.

❤

Hey unrelated to the video, but I’ve always loved your make up. I’d like to dabble more in it myself now but I have very sensitive skin and I sweat like no one’s business. I’d like to know the brands you use ? (Though I’m thinking of starting with E.L.F. + Black Opal because I don’t want to break the bank and just starting to get in it again.)

@Aneva

10 ай бұрын

I will share what I use just for you and others who are curious!!

So as a neurodivergent person that also was late diagnosed (in my 30s) point a few years ago, and also having the additional privileges of being able to appear as a white AMAB cis-gender hetero-normative person (which I know I am lucky as that is probably about as priveledged as any of our neurodivergent brethren can get short of also having monetary wealth, when it comes to trying to mask and not face the worst our social structures/institutions can bring to bear) and I often find myself worrying that my own experience and perspective might be biased or otherwise inclined to be perceived in a way that misrepresents or somehow lessens the challenges, struggles and experiences of other members of our community too... and while I struggle overcoming that and being comfortable expressing my own experiences openly still put out fear I might talk over other, less represented segments of our community, as I ponder your thoughts on this video I do wonder if perhaps some of the issues goes back to the inherent strengths and weaknesses of labels? For me (as I can only speak for myself obviously and in no way wish to suggest this is anyone else's experience) but I have found the ASD label to be helpful and have some benefit in better learning about myself, understanding the things I take for granted that the NT world finds odd and vice versa, and better understanding that my experience of the world is even further from "normal" NT experience than it is for any average 2 NT people's experience is from each others. It also has had the power (in the age of the internet we live in) to realize there are actually a lot of people not so different from me whose experiences may not be the same, but may at least "rhyme" in a lot of ways. Sure they are a rare and precious few compared to NT but I think there's a lot of value in being able to see that we aren't "broken"; just different and there are other (also not broken) people not so different from ourselves in the world. That said, labels also have major downsides because it allows people that do not care to consider the intrinsic value and uniqueness of each individual on a daily basis to categorize and lump people together into stereotypes... which dehumanizes everyone in any such stereotyped grouping and makes it easy for those doing the stereotyping to make decisions about/for the other group... Ultimately (I think, -hopefully someone will enlighten me if I am showing out of ignorance here) the most impactful thing that makes autism disabling is the way society is built around NT folks' needs, strengths and weaknesses on every front. It makes sense: they are the majority and just by numbers alone it isn't surprising things were built in a way that makes the most sense to the most people. The problem is those expectations are not optional (or even flexible) in most ways that would benefit people with sensory/ communication/ physical ability/etc differences. That said I think the issue is that all of us in the neurodivergent community are having to deal with society as whole stereotyping is under a label and then using that to make assumptions about each of us as individuals. "High functioning" folks trying to push back on the stereotypes, by having the courage to share their own experiences I don't *think* are inherently pushing other members of our community that aren't as able to (try to) blend in to a NT society's standards into a seperate stereotype that can continue to be dismissed by society, *but* since humans seem prone to stereotype as a way of organizing big groups of (especially nuanced) information/subjects, I do suspect it may be important to make the concious effort to reiterate/remind those absorbing knowledge of what autism is that we are all different in so many ways, just like how autism is simply a different way of processing/ experiencing/ interacting with the world. Ultimately the end goal should be for society to make a concious effort to see each person (NT and ND) as the *individual* they are, each with our own unique set of experiences, needs, strengths, weaknesses and all with equal value. Because at the end of the day, every person is made up of a kaleidoscope of backgrounds, experiences, knowledge, strengths, challenges and methods of understanding/ communicating with the world that makes up that unique person (whether ND or NT), and my own should not be considered inherently more valuable or good than yours, or one of our neurodivergent brethren who struggle to interact with society's structure more than either of us, or our neurotypical neighbor down the street. ... Hopefully there was something coherent and useful among that stream of consciousness... 🤔 Hmm I guess if not I'll just summarize by saying I appreciate all that you do here and that it's been helpful as I'm going through my own journey of rediscovering who i an behind the mask. I'm also very grateful you put such thought and care into what you do and have brought this subject up because ultimately I know I am very privileged and as I try to navigate ways I can be helpful to our community as a whole, ultimately I do not wish to contribute in a way that might harm or lessen the voices/ needs/ experiences of others who are facing even more substantial challenges.

I tell what is an insurmountable problem, having autistic parents, that keep joining cults, and think they know everything, even as they Cognitivelg in decline, It can't be only me dealing with that. Life is unfixable, unjustified, and thankfully Terminal.

@Aneva

10 ай бұрын

It's important to know that while I personally cannot relate to what you have shared, someone else does and will. I do hope that they will feel comfortable enough to share here as well. The thing about the spectrum is that we only want to talk about the parts of it that we experience as individuals talking about the spectrum. We need to speak more about the abuse that we face and experience all because we think and operate differently.

@Aneva

10 ай бұрын

But there is also the emotional aspect of what you have shared. Feeling poorly about life and being alive is so so so common in our community. You are not alone, i imagine most of us have felt that way, even if just once

@FirstmaninRome

10 ай бұрын

@@Aneva totally, pessimism is so common, that on Facebook groups all autistic know antinatalism is , not wanting to have kids

@gigahorse1475

10 ай бұрын

Cognitive decline doesn’t have to do with autism.

TikTok has a very superficial representation of everything. Especially medical content. It comes with the medium. It is specifically successful on clickbait, dumbed down content. If you have a video of an animal seemingly behaving like a human it will get more views than a video in which the animal behaves like an animal. Why? because people want easy accessible "content". There is a reason why medical content on Twitter and youtube or google gets flagged as such. And you always have to remember that the Algorithm does not display autistic content to everyone. So not everyone in the world is getting exposed to a misrepresentation. But everyone in the world knows Rainman and Sheldon. Bottom line is in my opinion, misrepresentation is part of exposure. The media rarely gets anything right. Policework or medical work on TV is a huge misrepresentation. I bet every carpenter would cringe on 50% of the nails being hammered in media. The media is not there to represent things, it is there to superficially make people aware of something. The next thing I want to say is that asd is very diverse as I understand it. So no one individual or group can accurately represent everybody on the spectrum. And that is okay. Because we all just need to have "our world" be aware of what we need. It would be nice if everyone was informed on autism, but that will never happen. There was a tiktok a while back in which one person cut the other one in line at the supermarket checkout. The person being cut got mad, the other one had what was looking like a meltdown over the whole situation. Meanwhile the Karen that had been cut was still complaining how all the attention went to the person that was having a meltdown when in their opinion they were the real victim here. I watched this and thank god there was two people there trying to help the person with the meltdown. And that is about all you can achieve. If TikTok or any other media can inform people on what autism roughly looks like and how they can make the life of autists a little better than that is a lot. If it helps people getting into diagnosis earlier in life because someone recognizes them masking, if it helps getting more funding into diagnosis and accommodation, that is all you can ask for. You cannot ask for the Karen being educated on asd. And even a multifaceted representation of asd would not help to reach more people. I just think that as a recently diagnosed you have more energy to create a world that is better. When you have been diagnosed for decades you probably already live in a world where people understand you and you avoid the parts of the world that do not understand you. Is that ableism? sure is. And that is why I think it is great that people have the energy to stand up and complain. Because it actually does help. But people who have been living with it for decades are less likely to have the energy to do that. And I think it actually does not matter how big your support needs are or how recently you have been diagnosed if you want to raise awareness. Most content creators get around this by just speaking for themselves btw. And this is pretty much all most people are looking for from a person that is not a spokesperson or a scientist. Because most people, on and off the spectrum, get a lot from one person explaining their world. They don't need all the information, they just need a place to get started. Faking autism, overdiagnosing, misdiagnosis... For those claims you would need numbers. but let's get into some of this. Faking it. To what end? Every scam needs some kind of gain. What would that person gain? Let's say someone fakes it on tiktok - is the market for autistic content really that big? I could see it being more profitable to fake that you are rich or to fake you own your neighbors cat than faking being autistic. www.quora.com/How-can-you-tell-if-someone-is-faking-autism here are some arguments why faking autism isn't really worth the discussion. kzread.info/dash/bejne/ioWIu5V-ac6ak5s.html this video covers a lot of it as well I mean if there is one content creator who does it - they will not do it for long because in the end there is no gain to be had. Overdiagnosis I bet you a lot of doctors that specialize in autism will argue against you. And after all it takes a medical professional who specializes in this field to do a diagnosis. They train for years for this and they try to get it right. A diagnosis is mostly being made for people who need help. If you don't need help you probably do not need the diagnosis and a medical professional will not diagnose you just because it is a Friday and they need three more autistic people this week to beat a quota. I think that is a myth. Ten years ago everyone got diagnoses with ADHD. I think pretty much all of these diagnosis were correct and just because people got aware and created an environment for themselves in which they did not struggle as much or at all any more - that does not invalidate their diagnosis. they were not overdiagnosed, they were diagnosed correctly and got the help they needed. Misdiagnosis falls in the same field. And the last point I want to make is there is no benefit in creating more minorities within a minority. It comes down to individuals that need help and not into a group being accurately grouped. Let's take a different group as an example. LGBTQIA+, there are sooo many things being thrown into this group that you could make a thousand arguments why these people need to be a separate group and why those people need to be in a different group. Sexuality and Gender being thrown into the same group for example, a lot of binary categorizing, and so on. In the end there is a reason why it is one group. Some individuals in this group struggle more than others, some speak louder than others, some aspects have a bigger representation and some of that representation falls flat. Some people speaking for the group do not represent everyone in that group. The pride march in a free country does not represent the struggles of the individual that lives in a country that punishes people harshly for bein in this group. And yet - it helps. You cannot represent everyone and you don't have to. If you are G you don't and can't accurately represent T. but you raising awareness, you living your life as an open G, you actually help every T person out there because the world starts to realize that there is more to it than one kind of human being. I think a lot of the problems you try to identify are actually not problems at all or would solve little to nothing. What I think is a problem is that people with high needs have little to no representation and they would need a voice. But you would have to be in a place where you get a lot of information from high need people in order to speak for them. I honestly like your videos a lot btw. I will continue to watch them. I like them because I can connect with someone else and their personal experiences. Not because you represent or speak for the whole community. And like I said, you don't have to burden yourself with that - not unless you don't want to. There is a big difference between being a spokesperson and an individual speaking about their experiences. And that is okay. both those roles are valid in this world and you don't need to be everything all at once. Okay I end this here. I actually F*ing putting my opinion out there because I don't know if people will understand what I am trying to say and if I picked the right words to do it. I get all over the place very quickly. I hope I didn't come across too controversial. Because I didn't want to be controversial just for the sake of it.

@Aneva

10 ай бұрын

Very very very well written!! This is a very fresh perspective and I am looking forward to responding to this also! There are a lot of comments I can’t respond to until I’m free later- but please know that I’ll be back lol

@Aneva

10 ай бұрын

As I have done for other comments, I will use quotes and organize what I've written so it's not overwhelming to a reader! "TikTok has a very superficial representation of everything. Especially medical content. It comes with the medium. It is specifically successful on clickbait, dumbed down content." - (Paragraph 1) ~❤~ This is right! It's designed for quick information, as it's a "quick-scroll" platform. If you don't want to see the video, it only takes a split second to determine that for yourself. And the person posting the content understands this, so if they want your attention, they need to grab and keep your attention. ___________________________________________________________________________________________________________________ "The media is not there to represent things, it is there to superficially make people aware of something." -(Paragraph 1) ~❤~ Along with the statements you made before this one, I really appreciate that new perspective. It does help to get information out there, even if it is superficial. It only hurts when the superficial information goes too far, or if it really hurts a community. For example, those doctor TV shows are unrealistic- but in so many ways, they aren't. They may be dramatic and cinematic, but that's because they have to be "good for TV." The procedures and stress and corruption could be real- they're just glamourized and use only extremely fit and conventionally attractive actors. We just don't live in that world (I don't work in healthcare lol.) ___________________________________________________________________________________________________________________ "So no one individual or group can accurately represent everybody on the spectrum. And that is okay. Because we all just need to have "our world" be aware of what we need. It would be nice if everyone was informed on autism, but that will never happen." - (Paragraph 2) ~❤~ I think that you're right about how we cannot accurately represent everybody, but I do think that we individually can learn more about autism ourselves- and connect with other autistics to get an idea of what we feel about things. Like for example, I try to read a lot of comments, forums, and watch videos from autistic people. Sometimes, I feel differently (not disagree) about tiny topics relating to autism. But it's sooo helpful to understand the exact opinions or perspectives someone else has. That way, in our conversations with (NT) others, instead of saying: ~❤~ "all autistic people feel differently about ____________" ~❤~ we could instead say, "not all autistic people feel the same about ____________. I personally have heard (this opinion) and (that opinion), But here's how I feel..." ___________________________________________________________________________________________________________________ "If TikTok or any other media can inform people on what autism roughly looks like and how they can make the life of autists a little better than that is a lot. If it helps people getting into diagnosis earlier in life because someone recognizes them masking, if it helps getting more funding into diagnosis and accommodation, that is all you can ask for." - (Paragraph 3) ~❤~ I agree that people having a general understanding of autism is great and it benefits us greatly! I also agree that you cannot expect people to be THAT "on-board" with autism. However, it's extremely important for us to have a positive mindset, because that's what's gotten us this far! ___________________________________________________________________________________________________________________ "You cannot ask for the Karen being educated on asd. And even a multifaceted representation of asd would not help to reach more people. I just think that as a recently diagnosed you have more energy to create a world that is better. When you have been diagnosed for decades you probably already live in a world where people understand you and you avoid the parts of the world that do not understand you." - (Paragraph 3) ~❤~ You definitely cannot force a person to be informed or change. BUT- a multifaceted representation actually would help to reach more people. People - NT or ND- want to feel related to. If a ND person has something in common with a NT person, a bridge can be formed. Not that the ND person HAS to spend time educating them, but it's just an example of how we CAN and DO reach more people. ___________________________________________________________________________________________________________________ "And I think it actually does not matter how big your support needs are or how recently you have been diagnosed if you want to raise awareness." "Most content creators get around this by just speaking for themselves btw. And this is pretty much all most people are looking for from a person that is not a spokesperson or a scientist. Because most people, on and off the spectrum, get a lot from one person explaining their world." - (Paragraph 3) ~❤~ You're absolutely right! I think we should speak for ourselves, while also collaborating with others, and using our platform to make voices heard. ___________________________________________________________________________________________________________________ "Faking it. To what end? Every scam needs some kind of gain. What would that person gain? Let's say someone fakes it on tiktok - is the market for autistic content really that big? I could see it being more profitable to fake that you are rich or to fake you own your neighbors cat than faking being autistic." - (Paragraph 4) ~❤~ It seems silly right? 1: Who would want to be autistic? 2: How would that benefit them? 3: How would they keep it up? Short Anecdote: I remember being diagnosed with ADHD in 7th grade. When I got to high school, I remember hearing kids say they didn't have ADHD, but that they told their doctors they "couldn't focus" and their doctors "diagnosed" them anyway so they could get Adderall. It benefitted them because they felt that Adderall gave them the energy to study (or whatever other reason). Some just sold them. A lot of those kids actually were already B-A students who were scoring near or above 30 on the ACT. This was casual to them. Like "no big deal, just tell them you can't focus and that you can't sit still." All with a shrug after. These same kids spent time mocking and comparing themselves to their classmates who couldn't perform on their level. So Autism doesn't really get you pills, but it CAN get you attention (good or bad). This isn't exclusive to ASD. And while most of us humans only want good attention, there are some people who NEED attention. And some people don't care if it's good OR bad attention. Because we have social media, it's more out in the open nowadays. We all personally know people like this, but because we have internet access, we know people who are literally getting paid to make people gasp. To make people follow their every move. "What are they gonna do next?" And "Did you hear what ____ did this week?" So that would be one reason. For the attention. And yeah, most people are gonna doubt they're autistic. No problem, right? No one buys it. But if you have enough people like that "representing the Autistic community," it goes faaaaaar. Those videos go viral because of the shock value. It's the engagement that gets it out to the common folk. They know how much "pretending" is the acceptable amount. Just enough to where no one can deny it. LOL i feel like I'm coming up with a conspiracy theory with this angle, but I promise you, this has happened so many times. And it took a lot of undoing in the other communities (Tourette's, Schizophrenia, DID). But in conditions like OCD, ADHD, Autism, Bipolar, etc... Symptoms/Signs can be heavily masked, hidden, or "hard to catch on camera" (because the other three conditions have more visible episodes that people can more easily call BS on). This statement isn't perfect, but to clarify: People recorded their episodes on TikTok and it was sad because ALOT were fake (not saying it was the majority). When I saw those videos, I immediately thought, "omg, is THAT what it's like??" I'd never been exposed to those things, so I took it seriously. I wasn't thinking "Oh yeah they're definitely exaggerating or faking it." This had to be un-done by the people IN the community. It had to be debunked, all the way over to KZread lol. By then, those people had already received the attention, sympathy, acceptance, approval, and views they'd planned on receiving. They were found to be faking it, but they sought out negative attention to begin with. This is SOOOO different than undiagnosed/self diagnosed autistics. I was, at one point, both. The majority of us late diagnosed were already questioning and accepting that we are before we had access to a diagnosis. However, because those "shock value" videos made it all the way over to your aunt, your pastor, your waitress- you have to deal with the backlash. They may each know that the person they saw on tiktok isn't actually autistic. But now they're less likely to believe you when you express you're autistic. They're subconsciously comparing you to that video they saw. That bad taste in their mouth, and they already are on the lookout to see if you might be faking it for attention too. But you're not. And almost all of us aren't faking it. But here we are. So specifically, it's hard to find "numbers" on how many people are faking autism because I can't say for sure if there are any professionals actually getting funding, finding participants, or analyzing data to find out. But there is research on the topic of over diagnosis and under diagnosis of ASD!

@Aneva

10 ай бұрын

"Overdiagnosis: I bet you a lot of doctors that specialize in autism will argue against you. And after all it takes a medical professional who specializes in this field to do a diagnosis. They train for years for this and they try to get it right. A diagnosis is mostly being made for people who need help. If you don't need help you probably do not need the diagnosis and a medical professional will not diagnose you just because it is a Friday and they need three more autistic people this week to beat a quota." - ( Paragraph 5) ~❤~ I actually was almost diagnosed by a former therapist who doesn't specialize in Autism. However, she made a statement about Sheldon from Big Bang Theory, and I immediately knew she wasn't qualified to evaluate me. She did offer me an option to elaborate, and I had the opportunity to- but I WANTED to see someone who would do the proper testing. A psychologist can diagnose mental / developmental disorders. That is their ability. But they're people too. And sometimes, they'll give you "what you want" (bc it takes less energy and investment) without giving you a full understanding or breakdown of your autism (like the things you struggle with the most on paper or how you present on the outside, etc...) ~❤~ And if you go to a place or live in an area where people don't take this stuff seriously- you may experience something similar. Some doctors inform you that you have diabetes, but won't tell how how you can manage it, and they won't comfort you and tell you it wasn't all in your head. But YES there are so many qualified and well-studied/practiced professionals who are very good with diagnosis. I just encountered someone who would've just told me what I wanted to hear and presented me no paperwork lol. ___________________________________________________________________________________________________________________ "I think that is a myth. Ten years ago everyone got diagnoses with ADHD. I think pretty much all of these diagnosis were correct and just because people got aware and created an environment for themselves in which they did not struggle as much or at all any more - that does not invalidate their diagnosis. they were not overdiagnosed, they were diagnosed correctly and got the help they needed. Misdiagnosis falls in the same field." - (Paragraph 5) ~❤~ I know I wrote about this previously, but I'd like to go back and write a bit more! I actually haven't done a video on misdiagnosis, but I actually have been misdiagnosed before. And I personally found solace in believing that once I was given a more fitting diagnosis (one that explained my behaviors/struggles more appropriately) I could let the other one/s go. So I have a different view on misdiagnosis. ___________________________________________________________________________________________________________________ "think a lot of the problems you try to identify are actually not problems at all or would solve little to nothing." - (Paragraph 8) ~❤~ I definitely do believe these are problems, and I actually have hope that working on them will yield great results. But because there are problems that have existed for a long time, I think we just settled into them. I want to give autistics hope for the future. ___________________________________________________________________________________________________________________ "What I think is a problem is that people with high needs have little to no representation and they would need a voice. But you would have to be in a place where you get a lot of information from high need people in order to speak for them." - (Paragraph 8) ~❤~ You're 100% right there! Working with kids on the spectrum has been very eye-opening. I hope to find more opportunities to get information from high needs autistics, but so far- It's been great! I've been given a wonderful opportunity to see things from a different perspective. It has actually really helped me with this channel. But I hope to reach as many people as I can here as well! ___________________________________________________________________________________________________________________ "I honestly like your videos a lot btw. I will continue to watch them. I like them because I can connect with someone else and their personal experiences. Not because you represent or speak for the whole community. And like I said, you don't have to burden yourself with that - not unless you don't want to. There is a big difference between being a spokesperson and an individual speaking about their experiences. And that is okay. both those roles are valid in this world and you don't need to be everything all at once." ~❤~ Thank you so much! I always love getting comments, so thank you for reaching out also! I do know that I could just speak for myself, but let's be honest- I'm not as exciting as Beyoncé or a titanic survivor. I speak for others because I felt spoken for by other youtubers! I think it's great, and I truly enjoy it! ___________________________________________________________________________________________________________________ "Okay I end this here. I actually F*ing putting my opinion out there because I don't know if people will understand what I am trying to say and if I picked the right words to do it. I get all over the place very quickly. I hope I didn't come across too controversial. Because I didn't want to be controversial just for the sake of it." ~❤~ Haha I understand! Honestly, it takes a lot of patience and intention to type things like this. It also takes courage. And I always welcome different opinions. I can tell you for sure that there are people out there who will relate to what you've typed 100%. There always will be. But that is exactly why all of our voices should be heard. Because we don't all feel the same, and that's because we haven't all had the same experiences. But there are some things we all agree on, and that's that we want to be respected. We don't want to be mistreated. We don't want to miss out. We don't want to feel like we're a mistake. We don't want to feel ashamed anymore. We should gather around those things. Thank you so much for your perspective. Please know that you're always welcome to share here. Don't let my over analysis stop you lol.

Thanks for this video. Personally, I am tired of all the hatred in the autistic community. I could make a long list of all the people that I keep seeing autistic people hate: - Autism moms (most autism moms do want what’s best for their kids and do their best. They are not all attention seeking or filicidal) - Scientists who research autism and don’t 100% subscribe to the social model of disability - Anyone who doesn’t use 100% correct language (like if they say “person with autism” - Any autistic who is a stereotype (white, male, loves trains) - Anyone (including autistics) who has a different opinion, whether political, or about autism - Any autistic who had a controversial special interest like police (they get accused of racism even though they may just love police cars since they were 3) - Any autistic who has extreme meltdowns (look at how the level 1 autistic community reacted to the controversial scene in The Good Doctor) - Neurotypical people, or anyone who isn’t autistic (as if autistic people are the only good people on earth and that only autistic people struggle or have feelings) What’s worse is that all of these toxic autistic influencers justify their blatant hatred as “my strong sense of justice.” Well, MY strong sense of justice cannot stand any of that lack of nuance and stereotyping. I don’t think the autistic community is entirely bad, but I do think it has been hijacked by people who don’t think about others. It takes work to find my fellow autistics who can all get along and chill without constantly hating and tearing each other down.

I do think that it's worth noting that a lot of the reason why the diagnosis was changed was to eliminate the people that couldn't adequately participate in the diagnositc process. The folks that were too disabled to participate and the ones that weren't "autistic enough" to know that we needed to advocate for ourselves. The thing that hasn't been adequately advertised is that when the redefinition in the DSM 5 happened, it would have kicked a bunch of people off their diagnosis and out of their treatment/support systems had they not grandfathered them in. Two people with exactly the same traits at exactly the same severity evaluated mere months apart resulted in one of them receiving a diagnosis and what support there was out there and the other never receiving a diagnosis for anything and being more or less left to rot. I don't think that being diagnosed early means that things are easy, but in some ways it is kinder. Those of us that are either still struggling to get diagnosed or were diagnosed significantly alter, often times got to grow up feeling just outright broken. It often times felt like I had this literal person inside me that was trying to claw it's way out and that I had to keep it in because he would do bad things when he got out. I now know that that was partially OCD and partially a screwed up way of interpreting my meltdowns. But, the mental health system just tossed a bunch of gasoline on it by diagnosing me with a bunch of psychotic disorders and threatening to send me to a psychiatric hospital if I slipped up. It was a legitimately terrifying thing to have to navigate all while autistic and having thatcausing the problems, but not having any of the necessary skills to understand what was happening or why, despite being a very intelligent person. I do get the point that being high support needs isn't fun either, but at least they got the most fundamental right that many of us extremely late, or undiagnosed, don't, the right to have a sense of personhood. To not grow up estranged from even the most basic relationship with ourselves. I think that's the hardest bit of all, I'm going to be 43 in a couple months and I have absolutely no idea who I am and much of the time, I don't even know what I dislike. If it's not something that I dislike enough to have a meltdown over, then I dont' even know if I dislike it. I reguarly need people to tell me that I'm being mistreated because I don't have a clue due to the lack of a personal connection with myself. Thankfully, things are improving for me, but it's kind of weird situation because I have definitely had days where I literally can't cross a street without assistance, but somehow managed to make it through grad school without assistance either.

You were diagnosed relatively young for a late diagnosed standpoint. I don't think that invalidates your experience, but it is worth noting that you probably wouldn't have the same opinion on being able to mask if you were a couple of decades older and had to really fight for the diagnosis. I wouldn't personally call masking is a privilege. It is an extremely expensive thing to engage in. It's a privilege, the same way that being able to spend thousands of dollars a month on housing is a privilege. Yes, it is better than being homeless, but is it really a privilege to get to spend that kind of money on housing? Not really, that money could have gone to other things and so could the energy. Personally, I’m apparently going to have to get every one of the ASD misdiagnoses before I get a proper diagnosis, and I don't get much of a choice in the matter as I've already been given most of the most stigmatized psychiatric diagnoses out there. I think I'm just BPD and PTSD away from having all of them. It absolutely sucks to get to spend all my energy masking and be essentially too autistic for the neurotypicals, but not autistic enough to get proper recognition from the medical community that should be providing me with treatment that I can actually use. I'll get sent away with some pamphlets full of stuff that I don't have the executive functioning to make use of.

@Aneva

10 ай бұрын

Hi! I'd like to be thorough in my response, so i'll use quotes! "you probably wouldn't have the same opinion on being able to mask if you were a couple of decades older and had to really fight for the diagnosis" - you're absolutely right! I actually wonder what life would've been like if i knew as a kid, or if i didn't know for longer. I definitely was diagnosed much closer to childhood than what most people consider "true adulthood" which i'd feel-out is more like 30 and beyond. But I think that experiences really shape our relationship with masking. Many of us completely lose our identity to masking, and I think it's also possible to have a sort of stockholm-syndrome relationship to our masking. It sounds silly, but i think it could be something I could think on. "I’m apparently going to have to get every one of the ASD misdiagnoses before I get a proper diagnosis" - Most people don't understand autism- and on top of that, many psychologists/psychiatrists may not understand it to the extent they "should." There are subjects to specialize in as psychologists/psychiatrists. But when someone specializes in autism (or anything specific)- they're supposed to REALLY understand it (not just have an idea.) I've had many therapists, but my current one specializes in ASD and mood disorders. They're so hard to come by. I have been given several diagnoses as well- it's frustrating and very disorienting. And even as I type this, I have to remember that your situation is different. I of course cannot help, but I want you to know that it is not your fault. Most professionals are not equipped in the way autistics need them to be. "It absolutely sucks to get to spend all my energy masking and be essentially too autistic for the neurotypicals, but not autistic enough to get proper recognition from the medical community that should be providing me with treatment that I can actually use." - Your feelings are completely understood. It's exhausting. And you've been doing this for so long. I honestly know I can't do anything here but let you know that there are people who will read this and feel so appreciative that you took the time to take the words right out of their mouths. I honestly just hope that you can find someone who can actually recognize what autism actually looks like, because It's much more rare to have every single mental disorder than it is to just be on the spectrum. i think lol

@SmallSpoonBrigade

10 ай бұрын

@@Aneva Thanks, I think that in general we could all use more compassion and understanding of our fellow travelers, and that having more awareness of what it's like for other people never hurts. I have noticed that there really is a lot of truth to the notion that in some ways "mild" autism really is more about how much it impacts other people, and that the milder forms are in some ways more extreme. I always assumed that the 142 IQ that I got in an online test was artificially high because that's usually the case, but I've recently realized that if it is artificially high, it's probably not by that much. It's completely consistent with somebody that's managed a masters without support while having this sort of executive functioning issues. So, I understand some very complicated things quickly, but then I've had days where I can't figure out how to cross the street or get off of a bus if the driver forgets to open the backdoor. Probably still a bit easier than being higher support needs, but the gap is probably not as wide as people sometimes assume. This whole business of higher and lower support needs individuals sniping at each other really does need to end because it doesn't do any of us any good. I do think that it's extremely unfortunate that there has been so much marginalization at the extremes of both ends of the masking spectrum. I'm glad that they went with support needs as the basis, but in some ways, it probably would have been better to go with the masking level just because higher masking individuals do have a distinctly different set of challenges and do need to be studied specifically as we're really not the same. (And I don't mean that in the elitist way, we often times have a lot of damage from decades of faking it and often have trauma and dissociative disorders that make diagnosis even more tricky)