Me too. Sometimes it actually calms me down and puts me in a better mood for the day or night. I luvvvvvvv REAL N RAW! Sometimes it's alot more interesting and validating than just emotionless and controlled content. I love the REAL STUFF! 😉😊💯💥
You’re like me…… validation feels good. Thank you for this. Love the unfiltered energy I am living vicariously through you watching hope I can strip the mask even a little soon. I’m sooo tired.
It's my experience as an Autistic adult, that when we vent, that is just want to let off steam, not directed at anyone, just release all the built up exaggerated emotions we feel, even though it is not directed at someone, people in the proximity seem to take it personally. Based on the fact that Autistic individuals tend to be very empathic and have exaggerated emotions, it is possible, I believe, that we "radiate" these emotions and they become tangibly felt by those around us. Even prefacing it with, "It's not you", or "I just need to vent", it makes no difference. This often leads to misunderstandings. This is just my experience.
Yes, I learned that too. I think neurotypicals do not understand that neurodivergent people sometimes have to vent for 5 minutes and then everything is fine again. There is no big problem to fix. Just someone who is overstimulated and has to express that. There needs to be more education about it so it gets better accepted in the workplace. The rule to show no emotions in the workplace is in my opinion a form of silent discrimination. Not only for neurodivergent people but women in general. Because women have fewer problems with expressing emotions - speaking very generally of course. And I do not mean that women are more emotional. I mean that men culturally learned that emotions are bad and not to be shown. And this is still a misconception that predominates our workplaces and is accepted as true even though it is against human nature and not rational. It is just a believe system.
I wish my coworkers could understand this.but no,they only think I'm a mean person.funny no one remembers anything good about you once your mask comes down after 8 hours of wanted to be back home.after you can't take anymore and melt down,it's all the normal people remember.thank you for letting me realize how many others go through what I do.
I would argue that you didn't fail. You demonstrated how flawed their entire approach was (just listening to the setup gives me anxiety). The fact that they didn't even listen to you about the problems with the format itself just proves how much work needs to be done. Public meltdowns are extremely embarrassing and draining. Several times I had a public meltdown I was nearly fired from my job. I still feel ashamed of those instances, even a decade or more later
@@gf0x90 See, that just reads and them fucking up enough to push you their. Neurotypicals always manage to blame us for their mistakes and oversight. Zero reason to even care if they react weird to the consequences of their own actions.
"autistic people don't take breaks btw, if an autistic person wants a break, they don't care about your allocated break time, we'll just get up and leave the god damn meeting" *ORION THANK YOU SO MUCH FOR VALIDATING THIS FEELING FOR ME!!!* i'm 23 years old, and i was just diagnosed about a month ago. there's a lot of things i still don't understand about myself, a lot of traits i never realized had everything to do with my autism. your channel has helped me so much along my journey. thank you.
My neurotypical friends always tease me because I randomly leave at times when we are hanging out together. I simply don't get the social norms around taking short breaks.
As a former, very self conscious people pleaser, I probably would’ve forced myself to stay through discomfort. But, we’re talking about autistics that are trying to be involved in advocacy, so reason would stand that they would advocate for themselves. Of course, my people pleasing days were before I even started to consider self identifying as autistic, let alone acceptance, and an official diagnosis. So yeah, I agree, most would get up and leave when they got frustrated, annoyed, or whatever. The whole premise of this meeting was flawed from that start. 60 mins in 2 hours? And you’re going to listen to ALL of us to our satisfaction? Not a chance in hell. It makes no logical sense at all. You got intro time, you’ll need closing time, you’ll need a break.. so it’s even less than 2 hours, maybe 1.5 hr if I’m being very generous. If I were involved, I would’ve voiced this during MY time, and just flat out say “I feel like you guys are just placating us by giving us the ILLUSION a that we have a voice, but you can’t be bothered to break this down into smaller groups.. or hell what about giving us a survey to work on with a options to add what we wanted? Then the meeting could be used discussing the frequency of certain responses and suggestions and getting ideas for what YOU could do to ACTUALLY HELP us. But no, you just want to give us the ILLUSION that you think we matter, when the truth couldn’t be further from that. Surveys, reading our documents, and compiling the data would be just too much work, so you’re going to make us do it and you’ll just wash your hands of the matter saying ‘well we gave them the platform to discuss this together.’ Seriously my dudes, we already talk about this amongst ourselves for the most part, we need you to ACTUALLY DO SOMETHING.”
@@rachelann9362They didn't allow that because we had to be open for business hours so I just collected 5 hours of overtime each week and no one would say anything to me about it because I was so productive. I really liked almost every single person at that job, and quitting during a shutdown/meltdown is one of the things that finally drove me to research more about autism and sure enough. describes my entire life history. See the woman I was supposed to be supervising would constantly interrupt to side chat about personal things. it was hell. I'd say something to her about it and she would just interrupt me again in a quieter voice.
I totally understand this Orion. I went in person to the Autistic Forum in Melbourne and I had to keep pulling myself back. I said to my neurotypical friend never ask an Autistic person a question when you want a straight quick answer, it will take five hours as my brain always takes the scenic route 😂 loved this video 💙
The scenic route is always the way my brain goes. 😅 I often have to stop and ask myself if the person really needs or wants all this extra information I'm giving them. 😅
Love this! I’m absolutely unable to NOT take the scenic route, no matter how hard I try! There’s just too many layers of thoughts to sort through and process! The best I can do is decide which thoughts don’t need to be explained “right now” , but that’s already after I’m partway through each one 😅
I don't see how invalidations like this could be helpful to the autistic community. Your rationale for this insenstive comment isn't obvious. Maybe it helped you feel better about yourself? @@cheralyse1352
Would you plunge an unknown chemical into the sun that might reduce solar flares CMEs etc. that presently significantly disrupt our planet a few days a century to a day every 100 miliniania if it risked changes that threatend a majority of life in the solar system?
And as a wise Perisan (Hafiz) once said, "Even After All this time, The Sun never says to the Earth, You owe me. Look What happens With a love like that, It lights the whole sky."
*My brain be like:* ... insufficient data to process this request. Extrapolate on those other attribute similarities between autism (or humans? ... I'm not sure which you meant or what things were growing ... real or metaphorical things/growth ... are those attributes part of the analogy or are you using that term in less symbolic sense and more of a direct literal capacity) *&* ... the massive ball of highly, compressed, excited hydrogen located at the center of our planetary system -- _this just raises so many more questions._ I don't even know where to begin with trying to understand the logic map. Analogy is inefficient compared to a more direct and literal information about topics that I can follow because I have a point of reference to work from. This sun analogy made me feel like an alien that doesn't speak the same language. It took me 41 minutes to watch this entire video and it took me multiple hours to get this far on the f-ing sun thing. It broke my brain. Because I'm pretty good at typing out my thoughts on a computer, you might not be able to tell this about me ... but I'm also just a little autistic. I'm going to be thinking about this one for weeks
Seeing someone reacting how I do was affirming. Seeing someone be vulnerable and honest about these thing heals my inner child. Thank you for being open about how crippling this can be. Thank you for being you and advocating for us all despite the pain and embarrassment. Thank you.
My heart hurts for you, Orion. I hope you understand that you are NOT unwatchable. This is not unwatchable for me, or for us, your community. This is so deeply ... reaffirming. You're talking like I do. You look like me, today. I know that your audience has some neurotypical people, too. Partners, parents, siblings, friends, loved ones of autistic people wanting to understand and help. But they don't understand that sometimes, autism looks like this. Sometimes, we are astounding and eloquent, and other times we are angry, frustrated, or heartbroken to the point that words become totally useless and it's easier to just say nothing at all. We are always, however, burning with passion. We deserve to be loved, respected, and heard, no matter what we look like that day. What you went through... I don't think you should be embarrassed. You had and have EVERY. FUCKING. RIGHT. To be outraged. I cannot believe that a group neurotypical politicians got together and thought that they somehow, someway, knew better than an AUTISTIC MAN, a HIGHLY EDUCATED AUTISTIC MAN WHO HAS DEDICATED HIS LIFE TO TALKING TO AND HELPING AUTISTIC PEOPLE ... *sigh* how could they think they would know better than you how to talk to - and hear - autistic people? Why would they think we need to talk like them, when this is the whole reason we are hurting to begin with?? How could they possibly believe that the way to help us is to continue forcing us to adhere to their expectations? On our day to be heard? On our day to be us? Holy shit. It's absolutely something to be angry about. They don't want to help. They want to say they "tried." They want to say that we can't be helped. They want to say that we are not compliant. They want to say we won't accept their help. They won't say that an autistic man tried to help THEM understand how to talk to us. They'll say we couldn't do it. They'll say we didn't try.
Yeah, I love this comment too. I can relate. We also have to remember we didn't see the whole interaction for ourselves. And some recognition for the challenges that autistic people face, in the form of a government forum.... is better than no recognition at all. It's the same for every group that struggles in society. In fact, it's the same for all of us in society. Things move and change slowly, unfortunately. Progressive, pro active, real change and real policy implementations take time. It's extremely frustrating the way governments and bureaucracies move so slowly and with such inadequacy. It's great what Orien is saying and doing. But it doesn't mean we all have to completely smash down on the government's forum on how to explore autistic people's needs in society. It's not like they would of purposely put all that time and energy into organising that forum to intentionally hurt or to intentionally do nothing. Constructive criticism of the event is fine. But completely attacking the forum and running it down entirely, isn't a realistic or mature approach. I've seen alot of that in the comments on this video.
@@eviefittell2937I don’t agree with your statement that any recognition is good and means the government was well intentioned. The possibility of holding forums or test groups or whatever means of gathering information, to then claim that autistic people aren’t compliant and are receiving adequate accommodations and being difficult as an intentional way to deflect further needs for government interventions is definitely there. The term Asperger’s was created by nazi’s (who were a governing body) to determine a group of people they did not deem worth living. The Tuskegee experiments in America were branded as being helpful to African Americans and were actually a means to exploit them. Those are both extreme examples, but that doesn’t mean that governments are no longer capable of exploiting people, they can just do it in more subtle ways, dog whistle politics and microagressions exist because they are less likely to incite outrage. Autism in America was weaponized to discredit vaccines and spread misinformation about them that has a lasting impact. Correlation does not equal causation, the rise in autism diagnosis and rise in vaccinated children was most likely unrelated to children getting vaccines and more likely caused by increase of screenings for autism in schools and better general awareness, as well as vaccines rising due to education about them and accessibility. Ice cream sales and murder rates also rise at the same time every year, but that doesn’t mean Ice cream is the cause of increase of murder. I do agree that black and white thinking is bad, and to directly assume the entire forum was not well intentioned is most likely untrue, but to assume that it definitely was well intentioned is still black and white thinking and ignores the history of systematic abuse of minorities that has and still does exist in every country. It’s also incredibly invalidating to the creator of this video. Even if the forum was done by well intentioned people, if the outcome is directly negative (coming to the conclusion autistic people don’t need accommodations when they clearly do) that is something someone has the right to be upset about. And using the excuse “we weren’t in the room” is in itself a microagression, autistic people have trouble reading social cues and intentions sometimes, but that doesn’t mean they aren’t capable of registering blatant disregard or disrespect. Minorities have every right to be suspicious of their government bodies intentions especially when the outcomes hurt rather than help.
My favorite part of your videos..... I get to see what people see when talking with me. Sometimes I hate being different but i'm grateful to know i'm not alone.
Me too. And you know what?.... I've seen neurotypical people behave in just the same way. Walk into any home, any friendship, any relationship, any marriage, any work place, and any business meetings.... and eventually we are going to see behaviours and reactions like these in most of them, at some point. I do this and have similar behaviours sometimes when I'm hurt, frustrated or very passionate about something. Most, if not all neurotypical people, will at some points in their lives.... respond in exactly the same way too.... in extremely painful, invalidating, unjust, hurtful and frustrating situations... where emotions are running high. It's part of the broader experience of being human too. It's an emotional response. Most of us have them. I wouldn't want to know anyone that didn't, to be honest. I know that meltdowns are a specific part of autistic traits. But the autistic community doesn't have a copy right on them. I think it's ok to have them. And as I said, it's part of the broader human experience too. I'd rather see that in people than no emotional response at all.❤
Wow, thank you Orion! As a neurotypical person who has struggled to understand adult autistic companions, this video has opened my eyes and my heart to melt downs I’ve witnessed and inappropriately took personally. You have done a great service to all with this video, autistic and neurotypical alike🙏🏼. Hats off to you my friend and again, thank you so very much for the hard won insight👍🏼.
I’m finding it very hard as an autistic person how someone who is not autistic struggles to understand autistic people 😔 it’s one thing that makes me very sad. Because I give physically and mentally everything to meet neurotypical peoples expectations and try to understand them and try see things from several angles to make them comfortable yet autistic people don’t get this comfort back. But autistic people are the ones who are labelled with “lack of empathy “. I think very often it’s the other way round
I needed to hear this right now. I'm autistic, in a relationship with a neurotypical partner who NEVER took the time to understand me. So much so that last month, less than 48 hrs after getting out of surgery I was told I'm worthless and that I should be sleeping on the street. He left and I've been COMPLETELY alone taking care of myself post-op. This has been, by far, the hardest month of my life. Seeing your comment gave me hope that there are people out there who are willing to understand us and not assume that we're ill-intentioned monsters ❤
This is one of the best videos I've ever seen. I'm Autistic (late diagnosis), but the whole way though the video, I could not stop smiling and laughing! The whole time I'm thinking to myself, I'm not the only one who is like this. The way you explained things, got diverted and frustrated, it was like I was looking in the mirror (but not with the same reflection). Thank you for making me feel included and not alone! 😃👍👍
I was cracking up, with tears in my eyes, for nearly half of the video. The, "OMG, that is sooo something I would do" kind of laughing at myself.😂 I hope he does more of these.
Definitely not unwatchable! You sounded just like me and all of those frustrations made perfect sense. But, we all know letting it rip like that always offends the powers that be so we all have our own little disclaimer filled with apologies and regret. 💕
Trying to get an autistic person to have a conversation using NT rules and conventions is like trying to put the proverbial square peg in the round hole.
I was having a hard day and told our family therapist that I just wasn't going to make eye contact and thanked her for her understanding. My wife was mortified. It was eye-opening. I tend to try to make eye contact just because it is expected, but don't worry about it much. I never imagined intentionally not making eye contact would have such a visceral reaction. I regret making my wife uncomfortable. But man, that was a wonderful feeling.
You went. You TRIED to accommodate a forum … run by NT’s. You did it. It was a miserable set up BUT you gave it a go! You are an example to all of us… to keep pushing ourselves to attempt the “impossible!” Your live video has shown all the deficits of the forum - and hopefully they will adapt it. You are human. You were frustrated. Thanks for sharing! It was just a really crap setup. Your live talks are my fav because I so relate!!!
I particularly appreciate the idea of dysregulation. I melted down in front of important people a few months ago. I was embarrassed. My wife (who is also autistic) said "you didn't say anything that wasn't true." She was right, but the delivery was uncontrolled and made people to not want hear me. They wanted me to be wrong because of my delivery. I saw the same thing in your delivery. You didn't say anything untrue, and I agreed with all your points. It was dysregulated. Honestly I think you were right. The meltdown just yanked off the regulator.
I like the unfiltered videos! Usually you just see the regulated and well functioning side of autistic content creators. It's very refreshing to see the unfiltered struggles that they go through just as any autistic person. We love you, Orion!
The solar flare analogy…I could relate to that. When I was working on my masters degree program I once became so frustrated while on campus, I threw my books and notebooks against the wall with a loud bang. I had been walking with a classmate, and it must have been out of the blue to her. I’m glad no one else was there to see that.
I was squirming hearing your story only because I can relate on so many levels with my own experiences. I too would have had the same experience of frustration and after reflection, you can see that this system was doomed to fail as it was unrealistic for the intended participants. Thank you for your honesty and your passion for wanting to make a difference in this world. Much respect from Adelaide
A solar flare is so accurate. It's a build up that spews out. For me that looks like flappy hands, then crying while "coping", then hysterically crying while covering my ears, then hours and hours of sleep while wearing earmuffs.
What a relief to finally hear somebody explain so clearly and honestly about trying to get autistic people under time constraints to answer questions without a) going off on a personal tangent and b) triggering other people as our voice rises and we start speaking faster. I found myself nodding over and over again as you were explaining what it's like when neurodivergent people end up in a group discussion. Soooo much truth there. "We'll just get up and leave the goddam meeting. We don't care about special times." AMEN!!!!!
Thank you for showing me the unfiltered you. I saw a lot of my husbands challenges in this video. The more I watch you the more I'm starting to understand him. You are a very important man, keep sharing your thoughts and insights. Cheers
Possible solution for the "conference" thing: classic Survey Monkey. -open the survey 2 weeks before the live discussion; -make it easy on a desktop with a large monitor; -present blocks of 10ish questions/ topics for discussion on each page; -allow backtracking between pages (don't permanently "submit" answers until the very end; -set a word limit in each response box. This will allow folks to organize their thoughts into the discussion, cut-and-paste to ensure everything gets said (not too many times), know what's going to happen, process before sharing thoughts (limiting backtracking) and change their answers accordingly.
Orion, THANK YOU for sharing this!!! Also, I love that when you got disregulated, you just infodumped facts about the sun at us 😂😂😂 LOVE IT. I JUST had a public meltdown last night at work. My schedule was changed AGAIN last minute, and I had already had a really long weekend where I had to train a staff for 12 hours straight, had to deal with accusing guardians (I work in a group home), I was left unstaffed when I thought I had staff, I left my breast pump at home and thought I was working 36 hours straight so I drove 45 minutes home and 45 minutes back to get it so I would have it overnight. Then when the staff FINALLY showed up after leaving me single staffed all day (he was scheduled to work with me during the day), I was able to pump……and then I dropped my bottle of milk on the floor and just started crying. The other staff was like “awww Natalie, you can just go home.” I replied “I can’t, I’m doing the overnight…” and he just says “why?” And for some reason I just KNEW this was going to happen (we were double booked for the night shift, which has happened MULTIPLE TIMES). I just lost it. I IMMEDIATELY start hyperventilating, crying harder, slamming stuff around, raising my voice. I ended up just having to leave and get away from everyone because I didn’t want to scare my clients and it was only going to get worse. I had a meltdown for a full hour. It was so embarrassing, exhausting, frustrating. I COULD NOT control it. And then when I came back this morning to relieve him, he made a joke about how he could report me and get me fired, because he doesn’t understand that I had an autistic meltdown, even though I said it multiple times. My co-workers think it’s like, a joke or something when I say I’m autistic. I have to literally be like: “I’m autistic, like some of the people we support”, and literally name autistic clients we support. He thought I just lost my temper. It’s like, yeah, I lost my temper, but it was after being pushed to my socializing/sensory/last minute change limit and I just snapped. I had been holding off a meltdown all day and between losing the milk I had waited all day to pump and then having my schedule changed AGAIN last minute, I just snapped. And now I’m back at work for another 14 hour day, single staffed with two clients, one who is full care. I’m also the lead so I literally do EVERYTHING for the home. The grocery shopping, the doctors appointments, all of the paperwork, all of the communicating with the guardians (who think I’m like, an indentured friend that they can dump THEIR ENTIRE LIFE ON). It’s just like. I SNAPPED.
You are amazing! I could never, ever begin to do what you do. I took the easy way out and decided to work with dogs. Then I took it even farther and started my own business so I could interact with even fewer people. Just reading what you wrote was enough to stress me out. I could never accomplish that. You are truly amazing, give yourself credit for all you do AND you help so many people as well.
😮 Good God!! No Wonder you had a meltdown!! You have been trying to do the work of at least 3 people! And since you said you had to pump breast milk, it sounds like you have a baby at home to care for, also a full time job! You work in one of the most stressful, short-staffed type of jobs there are! I would bet you are exhausted constantly! Sounds to me like you were completely justified in blowing your stack!
@@autodogdact3313 😭😭😭 thank you, reading the replies means so much to me. I’m feeling a lot better now, luckily I have really good support at my job. I love it, but it is difficult sometimes. It’s not my even my clients that are the challenging part, they are literally perfect, it’s all the crap that comes with the job, like the short staffing and the poor management. But thank you again for your kind words! That was a rough weekend 😂
@@joycebrewer4150 😭😭😭 thank you for your words, yes I have a 10 month old at home (first child) and I had to jump back into full time work (but we’re short staffed, so often I work 60 hour weeks) to support us 😭😫 LUCKILY even with overtime, I still manage to get 3-4 days off a week because I work the overnights in between my shifts, so I have LOTS of time to decompress after my week thank goodness. This job isn’t as hard as a lot of jobs, persay, but you are managing and caring for people and their homes. And it’s an important job. I put my all into it for these folks and it’s hard when you don’t have proper staffing. You find yourself trying to do everything instead of delegating because stuff like doctors appointments and meds are important and you need to make sure they get done right! Anyways, thank you so much again!! I love this community, it’s so heartening to come back to comments after a few weeks and find all these kind words and people understanding and giving empathy lol. I’m literally sitting here pumping milk 23 hours into my 38 hour shift 😂 but tonight I’m off at 11p and then I’m not back until Saturday at 9a, so WOO! Lol.
You are amazing! You explain things so well. You are helping me in communicating with my autistic husband. I really appreciate it. I’ll let you know how it goes in future.
At the 16:47 min I had to pause and just laugh out loud!!! 🤣 “Never in the history of the world has an autistic person been able to answer a question succinctly, quickly, and time sensitive.” HAHAHAHAHHAHHAHA 😂 and then I had to replay it twice to make sure my quote didn’t have errors and then a final third time to laugh one more time.
You seem so normal when unedited. I guess my whole family is neurodiverse as autistic and adhd combined-ish. Instead, I need to see how neurotypicals act in these situations, lol.
Sorry that you had to go through such a frustrating experience. And thank you for sharing it. For me ("not autistic") that was very insightful and understandable. The concept of zoom meetings under time pressure and with many different people is extremely frustrating even for the most patient neurotypical person...."modern" life in general is not easy for anyone. At least you were able to learn something through this experience. I love your channel. Keep on. Greetings from Switzerland 🇨🇭
“Consultation period is a croc”. ‘’ my whole life is walking around with a disclaimer before I say anything”’. Again put in the brutally honest way that is perfect and priceless. I feel your agitation in this video. Please trust me, so many of us hear you ❤ that whole experience sounds so counterproductive. This is more a reflection on the powers that be, not you.
I absolutely love this video, your raw communication is actually super calming and a really satisfying flow of information. Its so nice to listen to someone one the same wavelength as myself.
I was thinking the same thing. In fact, my neurotypical fiancee was getting stressed out trying to keep up, and I found the added details satisfying! 😂
The session was nerve wracking . To lead a group of people whom live with Autism , You found that you had a huge learning experience in authentic Autism spectrum disorders. Now you realise that communication in a strategic direction does not necessarily mean it will work for all. These interview interactions would be a great opportunity for learning how to approach understand and assist In tangible ways 😊
Thanks so much Orion - I'm sorry that you had to go through this, but its helped brilliantly to demonstrate autistic meltdowns. I'm in my 60's and was diagnosed about 5 years ago (explained so much 😂). I'm struggling with meltdowns at the minute and you've made me laugh and realise we're not in this alone.
Thank you for being so real. I can really relate to the embarrassment of having public meltdowns. Sometimes the worst part is having to face the people that saw the meltdown again.
Thank you so much for this video and for choosing not to edit. Watching you has helped me understand where I go, how I feel, how I behave, even when I'm not triggered. It's absolutely amazing to see this video compared to your others because your edited videos show just how mind blowing masking can look, how 'normal' we must also appear to others. I work with people daily in a high stress environment and by the time I Friday comes, I understand why I'm so exhausted. If I could just be me and be this candid and authentic within my work place without being considered 'weird', 'rude' or 'overly emotional' I'd definitely have more energy 😂 Anyway, my point is, I appreciate this. Thank you
I believe that maybe it would have helped to give people the questions and themes in advance and maybe even give them time a day before, so that they would be able to process, think and maybe even discuss them beforehand. How is one supposed to answer something in a short way if they also have to process and think about it at the same time? They could've written down their important parts or conclusions and then shared that instead of trying to get to the core while at it.
This is honestly the most human and relatable autistic video I have seen on TH-cam. I’ve had a week of this and I can’t tell you how validating this is. I know it sucks, and I’m so sorry you have these meltdowns, but I can’t thank you enough for sharing
It is indeed difficult to watch your content sometimes, but that’s why it’s so important. You won’t always be right about everything, but if we’re going to be heard we have to enter the arena anyway. Thanks for persisting.
Aw, I’m sorry the world has taught you to think your unedited self is unwatchable. I actually find this better, or at least easier to relate to, than your other content. I feel like I better understand you and how you think. Watching this will actually help me watch and understand your edited content. Also, thank you for sharing about meltdowns. So much terrible meltdown content out there. It’s relieving to actually have a respectable resource.
I am so sorry that you had to go through that. But I just wanted to say that I think you did a good job and I am sure you have made a difference and helped people see what autism is really like.... remember that. Having people see us for whom and what we really are is very important. And I also got a few laughs.... keep up the amazing work my friend!
I have to go through this on at least a weekly basis, during meetings with doctors/school/DDD/etc., when I’m trying to advocate for my son’s needs. I try to tell everyone involved that I need the questions/talking points ahead of time and need to be allowed to communicate through writing. My best solution, so far, is a texting group/chain where I discuss or respond to issues over time, and then once each month we have a virtual meeting during which members of the CFT, often the NTs I trust, will “translate” my messages/meaning from over the past month to the relevant authorities in the meeting. If I chime in, it usually comes off as a rant, but this is rare now that I have some amazing “translators” who are also caring advocates for my son (and me, when relevant).
Not unwatchable, very entertaining, and visually hilarious (not you, ok, maybe sometimes you) but also the pictures in my head of some autism conference frenzy. Me and my inappropriate humor having a grand time together. I love your digression into the sun! First I love astrophysics (I was required to take a since class, any class, so chose astrophysics because I agree with you: it is fascinating and too few people have a clue. It also gave me a hugse belly laugh because it is quite entertaining, and I do that, and forget my train of thought, and I teach, so I was imagining the class full of bewildered faces I see when I do this I felt like the Queen of Rabbit holes, until I learned I am autistic and met my fellow people and found out I am just the jester. I've been questioned about my life of disclaimers by several people. I feel your pain! The bit about lengthy over-explanations/time constraints as both hilarious and triggering. My doing so seems to make everyone who (allegedly) loves me *so angry* and I get incessant criticism about that.: I am pedantic, lecturey because I an seen as talking down etc. But I cannot speak another way, I cannot process my thoughts if I don't do that. I have tried to explain that to the best of my ability. So then I stay quiet and I get "why are you so quiet? Are you angry at me? What is wrong with you!?" Argh. "I am these people" I wish more people had this honest attitude. Huge appreciation there! [It is not surprising you bumped your mic. You express yourself as physically as a French/Italian person. Try hovering your arrow over the scroller-bar-thing ,and slide it. It's fun to see your hands waving about-in a really good way. Were you triggering yourself with your memories? While funny, I also felt like you needed some kind of tight squeeze or whatever helps you breather, because you obviously care so very much that even the memory was overwhelming.
I'm only 1 min in, and as a fellow Autist I'm just going "Ohhh nooo..." And feeling for you, at the mere mention of a public meltdown. :/ Even when it happens to me at home, in front of just my family, I always feel embarassed afterward, so I can just imagine how that would feel in public. Good on ya 4 sharing about it tho, it's so important for all of us (especially NTs) to know about! 🥰
This unedited is great, shows how we actually have to operate 🙃 One of the worst public outbursts for me was... drum roll... at a POST OFFICE!! One agent told me to address my mailing tube, and he would help me tape it shut since I was from out of town and had not the acoutrements to finish the wrap. By the time I got back to the counter, another agent was open, but wouldn't assist in the wrapping. Then I told him if that was the case, I didn't want to mail it after all, but he reminded me I had already ruined the tube for the next person and of course had to pay for it anyway... I won't even write here what ensued. Wanted to bring Going Postal back in style that day. 🤬😡🥵 (okay, so I paid, while crying hard) 💧
Can I say, thank you for being yourself, for sharing your raw, unedited, unscripted, account of your public meltdown (as you put it). Your account was very interesting and insightful, even as a neurotypical person, who works in the disability sector. This was the best explanation/situation account, to help me get more insight into Autism, and how things like time constraints, group pressure, trying to answer questions succinctly, etc are difficult and how us neurotypical people need to be more open minded, empathetic, realistic to provide alternative options in situations like you just experienced (ie online forums, meetings, etc) I'm curious if you could press rewind and do it again, in what ways would you suggest changing the format, alter the approach, the forum, layout for a more positive outcome in your eyes? To help others who may have to arrange online meetings, etc. Anyway, well done on your self reflection and subsequent light bulb moment. Amazing to see how, although triggered, you learnt from this experience. Not many people 'even neurotypical' can self reflect as well as you did in this video. 👍💯💖
I think we need to allow for a little grace here. To be fair, the neurotypical government officials facilitating this forum on autistic needs were probably unaware that the formatting wouldn’t work as planned. I think the best intentions were there; wanting to provide the community with a platform to voice their opinions about necessary change. They probably thought having you, an autistic person yourself, as moderator/host was not only inclusive but also important because they wouldn’t want to be seen as having a NT speak for the autistic community. This backfired for the exact reasons you stated in your video and reveals that future forums should probably be led by NT’s with proven expertise in and understanding of autism, and that you should be an incredibly valuable contributor to the discussion instead. I agree with others about a pre-forum questionnaire being utilised as well. To take a positive perspective, we learned something from this experience and can do better moving forward. Thanks for being candid 😊
It's such a pleasant feeling watching you speak the way I get to speak only when I'm by myself, pretending that someone would have the patience to listen to me. I'm 4 almost sleepless days deep into obsessive research about autism and just can't believe that people like me actually exist. I absolutely love the way you express yourself and I wish I could do that too. Lots of love!!
Im sorry that this has happened Orion I totally understand where your coming from I have had a couple of public meltdowns but I always try to get out of the situation that makes me uncomfortable I appreciate you for being honest
This was remarkable. You demonstrated the problems with this type of format and many similar formats cooked up by NT world. I've been in these types of groups for information gathering (not re autism), mostly at work. There's no way I ever got heard and if I did come up with a genuine comment, people just looked at me like I had 2 heads. I just learned to avoid them. I also hate the flip chart method or the sticky notes method. Always with time pressure. What they get is superficial at best, often harmful. Online doesn't make it any better than the flip chart thing. One thing about this video that I appreciate is your non-linearity. In my opinion, it's more valuable to circle around a problem/topic and come up with something genuine and workable than it is to do the "stopwatch" method. This video made be want to both cry and laugh. Right now I'm recovering from a too large family gathering over thanksgiving. I probably came closer to publicly melting down in that setting that I ever have. I didn't, but it's taking days alone to undo the damage. If people want to visit with me, it needs to be only a few people with plenty of time. I don't think they would like something that suited my "style," because we just don't fit into such structures. I don't fit in most of the world. Recognizing this is valuable.
This is about the most valuable video you've ever done. Unedited, thank heavens. Whenever I am called on for a consultation on autism, which happens regularly, I will ask the organisers to watch this beforehand. Thanks again, Orion.
This is literally why I did not want to have anything to do with the strategy or any kind of advocacy and working with the government. I take my hat off to you for doing it Orion because it's a nightmare and I agree that most people then feel attacked or unheard when you try to move people on or even when it's all done and then it ends up all falling back on the administrator aka in this situations your head. Nightmare! I don’t think you failed. Its the way these things are set up. So please don't blame yourself
There's still ten minutes left andnI'm eager to get back to it, but I wanted to share this thought that's burning hot inside me. What you're describing other people doing, saying you have done it, I know I've done it plenty, and I facilitate online peer support groups where I have to navigate a delicate balance between letting people have the space to unpack something that's going on and giving everyone else a chance to participate... I believe all of this comes back to trauma. And I believe the majority of autistic people carry trauma. Until the people who want to study us for our own good become truly trauma informed (which includes being directly informed by traumatized people and a double-serving of cultural humility on an individual level) they will continue to increase our overall trauma loads in their quest to reduce it (they think they're measuring quality of life but I think they're measuring the outward signs and symptoms of lowered trauma burden.) Maybe it's time for some of us "often studied autistics" to come togerher to develop a curriculum for learning how to respectfully study us.
Omg i'm at the end of the video !...i'm shocked by what they did to you and the group. Can we see the results ? With your comments in mind that will be a masterclass about autism. This video is priceless because so much helpfull. Thanks for unmasking with us 🙏 I hope you realize how helpfull you are🙏
Oh dear, sounds like it was a nightmare. Our reality seems to be such a difficult concept for the NT people to grasp. Thank you for putting yourself in such an uncomfortable position for yourself to try and make all of our lives better. You are truly appreciated
As an Autistic adult with an Astronomer Dad, this was so spot on. Thx for all you do, and your bravery sharing with us, not just providing info. It all helps, except that I don’t want you to always put everyone else first!
I'm sorry you feel that way. You shouldn't have to hide who you are for others. You did nothing wrong at all. That is not a proper forum for anyone. These topics deserve proper time dedicated to them.
I have to laugh at myself because, while I found this video overwhelming at times and had to take breaks, I am EXACTLY this intense. Diagnosed ADHD as an adult, and only in the last couple of years suspecting I also may be autistic. It definitely put my biggest public meltdown (at work, because of course it was) into a somewhat different perspective. Lots to think about. Thank you for this.
I feel ya, I think that the organisers should have allocated a series of workshops to talk at length per subject. Hopefully they will do that in the future. You did your best, I really appreciate your unmasked approach to telling your experience. Greetings from Shropshire UK
Sending thanks and best wishes from the Isle of Wight, England. I really feel for you, since Autistic people do have empathy after all, and hope that there are better days ahead.
Thankyou. This is what we need. No vanilla. Real. PLEASE. This is what we need to hear and see. Im sick of the profit being made from quirky colourful ojtfits and little weird behaviours and stim toys during ted talks. We need this. The real and validating. I feel this completely.
Your summation of consultations was spot on, Orion. They are frustrating. It's a game. My job often involves writing submissions to Govs and I know, when writing submissions and getting them approved by the institution's executive, that they probably won't be genuinely considered, even when the points made are important and beneficial, not only for institutions and individuals, but for wider society and the Gov itself. It's frustrating the money that goes to waste in playing these stupid games.
I loved and appreciated the unedited video. It was raw, real, insightful and very informative. I am a neurotypical person who lives with family members on the spectrum and this all needed to be said!!
1. Your explanation of a meltdown was really helpful for me, thank you. 2. I think un-masked you is beautiful; in that we get to see your mind in its splendor, with complete clarity; through your speech, the way that you move (air painting your thoughts), & watching your personal.brand of self regulation. We get to see you not just as a person, but as an authentic soul...& I think that's beautiful. 3. I'm always proud of people who practice emotional courage. I do my best to practice & live in a state of emotional courage regularly. I just want to be fully authentic...to just BE...to simply exist as my true self, you know. So in seeing you be brave enough to show yourself unmasked on your platform makes me happy. That's very healthy of you, I think (in my humble opinion 😊). 4. & Finally, having to disclaim yourself while speaking to people DOES suck & I'm damn sick of it too 😑😂.
Thanks for making this video Orion. A few comments: 1) I read about a third of the submissions to the original Senate inquiry that led to the plan of having a National Autism Strategy. A lot of these submissions, mainly by autistic adults, were very insightful. So the information is there. I am not sure what more the government is seeking from the type of meeting you described. It would only make sense at this point to go into greater detail rather than seeming to start again from scratch, except to say that it's an opportunity for more people to participate. 2) I agree that autistic people are usually very long winded and there would be no point in a group meeting with minimal time available. 3) When the government announced that the funding for the National Autism Strategy was about $2 million, I thought that money would not go very far. And so either the process would be rushed or a lot of autistic people would be giving a lot of time for free. It looks like it's the former. 4) I don't blame you or anyone who was there for having a meltdown. It makes sense under the circumstances.
This video is unbearable in the best way. I can completely relate. This kind of situation is SO frustrating and even agonizing. I feel for how much it affected you. The disclaimer part is also so incredibly relatable, it's so annoying to have to continuously tiptoe around everything all the time. Thank you for sharing your thoughts and experience.
Sorry, Orion, for your pain, but again, i have gained so much insight into what is going on inside my daughters brain. My heart does ache for all autistic people.
Thank you for being a part of the consultation and for all the advocacy you do behind the scenes. Even though I criticise the Govs approach, the fact that you were selected to be involved in chairing a consultation group, says that perhaps there is a slight glimmer of hope for us after all. I participated in WAs consultation on Disability Legislation recently. It was much better than I expected because the Department of Communities own staff with disability ran the online session. But the proof will be in the policy that eventuates and whether the powers to be listen to and genuinely engage with our feedback. I hope so. Positive change is needed.
Autistic here - Sounds like an experienced (meeting/group) Facilitator(s) could have been really useful (maybe for next time). Facilitation, especially without any training, can be really tough and stressful. What you experienced (especially with the feeling of so much riding on this meeting) sounds totally reasonable. I worked at a company for a while that trained people in meeting facilitation (among other things). There are a lot of preparations ("desired outcomes" - e.g. a list of what you want to accomplish and how everyone will know if the meeting was successful i.e. "Top 5 things we want allistic people to know about autistic people" (something you can accomplish in the time frame), plan "how" you are going to run the meeting to help the group reach this/these goals - e.g. brainstorm time, sticky notes, pre-work/questions in advance - so important for me to process prior to needing to respond! - post-work, etc.), facilitation techniques, "preventions" (e.g. having "parking lot", setting mutually agreed upon "ground rules" prior to start, etc.), "interventions" you can do in the moment, etc. that help make the time less stressful and more productive. Even simple things like setting meeting roles in advance - someone to take notes, timekeeper, someone to create the agenda and the "how" the meeting will run etc. (that can be collaborative/multiple people it doesn't have to fall on just one) ...I find the structure of these kinds of meetings really comforting. Take care and thank you for the video and the work you are doing!
Oh man I'm sobbing. Thank you for doing this video and publishing it. This was so helpful. I can't even put all of it into words. I'm a very late diagnosed adult (50's) thanks to my teen getting diagnosed. I feel so much less alone, and less crazy. Thank you.
Im with you, I also have had “meltdowns” just because I’m fed up with the facade of ignorance that is the fabric of society and everyday existence as a ND in a NT world. Your candid(unedited) podcast help me actualize as a fellow human, diagnosed with ASD, ADHD as well as a laundry list of “disorders”.
I get you, about the "disclaimer" it's totally a stupid thing to keep saying. It's the people hearing you, that have the problem, it's their triggers, that they have to deal with. 💪 You are really insightful, and very helpful. Genuine and authentic 🙏 you
I love you so much more unmasked and unedited…. Your perfect and awesome the way you are… much better to be unique and interesting rather than blending in with the crowd😊
I actually cried on and off watching this just bc I respect you and love your content. I learn so much from you. And then to see the “unmasked” version, I felt like I could relate SO MUCH. And it was amazing to see another adult who seems ‘normal’ but can have all these similar experiences I have. I hope that doesn’t come off wrong but yeah. I could watch this kind of video all day long
I just want to thank you for this amazing video. First time I see one from the "unedited; unmasked; unwatchable" series. I'm gonna watch them all. I'm a Brazilian AuDHD here and I'm sorry for your just too relatable experience. The system is broken and so are the people who designed it. I'm going through hell for almost 7 years since the perimenopause and for the last 3 I've been completely at the mercy of the health care system which is nothing else but mercyless and ruled by unbelievably stupid people. And bc of my many comorbidities and life struggles I don't have any energy left to fight them. Praying for better days...
You had me laughing out loud numerous times as so funny yet also not funny. Some very relatable points! Thank you for sharing this. It’s true, more need to speak out truthfully about adult meltdowns. I really respect those who are authentic and who share an array of emotions, not just the ‘good’ ones.
Yes, I laugh too. Not in a bad way. I laugh n smile during lots of Orion's videos, because he has such a good sense of humour. He's serious and informative. But also witty and funny.😊
I wish i had of known. Probably would not have got on but it would have been a huge insight. I think they will see the challenges, i think this really may have shown EXACTLY what it can be like for all Autistic individuals. They will see the varying degrees of the spectrum and how individualized it really is. I am sorry Orion that it turned out that way for you, and that it had such a costful impact on you. I actually feel grateful that you were out front. You didn't do anything wrong. You have shown to Neuro Typical people exactly what we deal with everyday, day after day, year after year. And how taxing it is for us.
Dude! Thank-you SO MUCH for doing this "Unmasked, Unedited, Unwatchable" session. I needed that. Talk about insightful. Watching you "raw" had that "in the mirror" effect on me, and I suddenly felt "normal."
I don’t know if it was how I was raised in the environment I was raised in or what but whenever I don’t feel heard, I shut down and it’s like I’m on autopilot. My inner voice is screaming the opposite of what I am saying. Then I relive it and I’m thinking ‘what is wrong with me?’ So I try again and am triggered and it gets out of hand. I just.. I don’t know. I was also in the middle of all fights and I’m just like “I want no part of this. Leave me out please.” Never happened though. I also feel like this video reflects me in triggered situations. So yeah. Please keep bringing awareness
Dear Orion, a thought what might help in future could be.... to ask for written submissions that will be collated and later summarized and for there to be a series of questions guiding people for them to give an opinion or response to. I'm hopeful this would give clear insight into possible improvements and government's actions to assist the Autistic Community. Plus people would have time to reflect and give a considered response. Everyone would have a chance to "have their say", and it could be statistically analyzed to show the most pressing problems to be dealt with first. I don't know if these ideas are of any help... but my thoughts are with you for the future. All the best Joseph
I could watch unfiltered, unregulated, REAL orion all day long. I'm not even trying to make a joke. This kind of video is so validating.
Me too. Sometimes it actually calms me down and puts me in a better mood for the day or night. I luvvvvvvv REAL N RAW! Sometimes it's alot more interesting and validating than just emotionless and controlled content. I love the REAL STUFF! 😉😊💯💥
Same 🖤
Likewise
You’re like me…… validation feels good. Thank you for this. Love the unfiltered energy I am living vicariously through you watching hope I can strip the mask even a little soon. I’m sooo tired.
I could as well. I actually enjoy the unedited Orion more I think.
It's my experience as an Autistic adult, that when we vent, that is just want to let off steam, not directed at anyone, just release all the built up exaggerated emotions we feel,
even though it is not directed at someone, people in the proximity seem to take it personally.
Based on the fact that Autistic individuals tend to be very empathic and have exaggerated emotions, it is possible, I believe, that we "radiate" these emotions and they become tangibly
felt by those around us.
Even prefacing it with, "It's not you", or "I just need to vent", it makes no difference. This often leads to misunderstandings.
This is just my experience.
Great comment.
Yes, I learned that too. I think neurotypicals do not understand that neurodivergent people sometimes have to vent for 5 minutes and then everything is fine again. There is no big problem to fix. Just someone who is overstimulated and has to express that. There needs to be more education about it so it gets better accepted in the workplace. The rule to show no emotions in the workplace is in my opinion a form of silent discrimination. Not only for neurodivergent people but women in general. Because women have fewer problems with expressing emotions - speaking very generally of course. And I do not mean that women are more emotional. I mean that men culturally learned that emotions are bad and not to be shown. And this is still a misconception that predominates our workplaces and is accepted as true even though it is against human nature and not rational. It is just a believe system.
Oh the irony of you demonstrating total empathy to your fellow autistics and the NT's just not recognising it as empathy...
A few people get this but a lot don't.
I wish my coworkers could understand this.but no,they only think I'm a mean person.funny no one remembers anything good about you once your mask comes down after 8 hours of wanted to be back home.after you can't take anymore and melt down,it's all the normal people remember.thank you for letting me realize how many others go through what I do.
I would argue that you didn't fail. You demonstrated how flawed their entire approach was (just listening to the setup gives me anxiety).
The fact that they didn't even listen to you about the problems with the format itself just proves how much work needs to be done.
Public meltdowns are extremely embarrassing and draining. Several times I had a public meltdown I was nearly fired from my job. I still feel ashamed of those instances, even a decade or more later
Me to, with work meeting feeling not being heard and/or understood
Sorry to hear that. Don't forget to celebrate all your triumphs. Sometimes it's too easy for us to forget all the good things we do :)
The shame is horrible. And isn't something anyone should feel for a meltdown.
Yeah, losing control and screaming bad words in an online work meeting with my boss and many co-workes? Check.
@@gf0x90 See, that just reads and them fucking up enough to push you their. Neurotypicals always manage to blame us for their mistakes and oversight. Zero reason to even care if they react weird to the consequences of their own actions.
"autistic people don't take breaks btw, if an autistic person wants a break, they don't care about your allocated break time, we'll just get up and leave the god damn meeting"
*ORION THANK YOU SO MUCH FOR VALIDATING THIS FEELING FOR ME!!!* i'm 23 years old, and i was just diagnosed about a month ago. there's a lot of things i still don't understand about myself, a lot of traits i never realized had everything to do with my autism. your channel has helped me so much along my journey. thank you.
My neurotypical friends always tease me because I randomly leave at times when we are hanging out together. I simply don't get the social norms around taking short breaks.
As a former, very self conscious people pleaser, I probably would’ve forced myself to stay through discomfort. But, we’re talking about autistics that are trying to be involved in advocacy, so reason would stand that they would advocate for themselves. Of course, my people pleasing days were before I even started to consider self identifying as autistic, let alone acceptance, and an official diagnosis. So yeah, I agree, most would get up and leave when they got frustrated, annoyed, or whatever.
The whole premise of this meeting was flawed from that start. 60 mins in 2 hours? And you’re going to listen to ALL of us to our satisfaction? Not a chance in hell. It makes no logical sense at all. You got intro time, you’ll need closing time, you’ll need a break.. so it’s even less than 2 hours, maybe 1.5 hr if I’m being very generous. If I were involved, I would’ve voiced this during MY time, and just flat out say “I feel like you guys are just placating us by giving us the ILLUSION a that we have a voice, but you can’t be bothered to break this down into smaller groups.. or hell what about giving us a survey to work on with a options to add what we wanted? Then the meeting could be used discussing the frequency of certain responses and suggestions and getting ideas for what YOU could do to ACTUALLY HELP us. But no, you just want to give us the ILLUSION that you think we matter, when the truth couldn’t be further from that. Surveys, reading our documents, and compiling the data would be just too much work, so you’re going to make us do it and you’ll just wash your hands of the matter saying ‘well we gave them the platform to discuss this together.’ Seriously my dudes, we already talk about this amongst ourselves for the most part, we need you to ACTUALLY DO SOMETHING.”
Being forced to take an hour lunch break at work was hell. I just refused and worked through lunch every day lol
@@cross-eyedmary6619 seriously. I’d rather leave an hour early.
@@rachelann9362They didn't allow that because we had to be open for business hours so I just collected 5 hours of overtime each week and no one would say anything to me about it because I was so productive. I really liked almost every single person at that job, and quitting during a shutdown/meltdown is one of the things that finally drove me to research more about autism and sure enough. describes my entire life history. See the woman I was supposed to be supervising would constantly interrupt to side chat about personal things. it was hell. I'd say something to her about it and she would just interrupt me again in a quieter voice.
I totally understand this Orion. I went in person to the Autistic Forum in Melbourne and I had to keep pulling myself back. I said to my neurotypical friend never ask an Autistic person a question when you want a straight quick answer, it will take five hours as my brain always takes the scenic route 😂 loved this video 💙
'The scenic route'! Love it! My husband's brain likes to take the scenic route 🥰
@@JaneAustenAteMyCat thanks 🙂
The scenic route is always the way my brain goes. 😅 I often have to stop and ask myself if the person really needs or wants all this extra information I'm giving them. 😅
Love this! I’m absolutely unable to NOT take the scenic route, no matter how hard I try! There’s just too many layers of thoughts to sort through and process!
The best I can do is decide which thoughts don’t need to be explained “right now” , but that’s already after I’m partway through each one 😅
I think the solar flare metaphor describes and explains autistic unmasking and meltdowns extremely well.
Isn't there some medication for this??? consult your Dr.
I don't see how invalidations like this could be helpful to the autistic community. Your rationale for this insenstive comment isn't obvious. Maybe it helped you feel better about yourself? @@cheralyse1352
@cheralyse1352 is there a medication against babys crying, or against hearthreak? Grieving?
It is so on point!
Would you plunge an unknown chemical into the sun that might reduce solar flares CMEs etc. that presently significantly disrupt our planet a few days a century to a day every 100 miliniania if it risked changes that threatend a majority of life in the solar system?
I like the Sun analogy, but don’t forget the other attributes of the Sun, it reveals and makes things grow😎👍
And as a wise Perisan (Hafiz) once said,
"Even
After
All this time,
The Sun never says to the Earth, You owe me.
Look What happens With a love like that, It lights the whole sky."
*My brain be like:* ... insufficient data to process this request.
Extrapolate on those other attribute similarities between autism (or humans? ... I'm not sure which you meant or what things were growing ... real or metaphorical things/growth ... are those attributes part of the analogy or are you using that term in less symbolic sense and more of a direct literal capacity)
*&*
... the massive ball of highly, compressed, excited hydrogen located at the center of our planetary system -- _this just raises so many more questions._
I don't even know where to begin with trying to understand the logic map.
Analogy is inefficient compared to a more direct and literal information about topics that I can follow because I have a point of reference to work from.
This sun analogy made me feel like an alien that doesn't speak the same language. It took me 41 minutes to watch this entire video
and it took me multiple hours to get this far on the f-ing sun thing.
It broke my brain.
Because I'm pretty good at typing out my thoughts on a computer, you might not be able to tell this about me ... but I'm also just a little autistic.
I'm going to be thinking about this one for weeks
I often get the impression politicians like to go on for hours, yet will only listen for seconds!
You didn't fail Orion, the system failed you and never apologise for being yourself
Seeing someone reacting how I do was affirming. Seeing someone be vulnerable and honest about these thing heals my inner child. Thank you for being open about how crippling this can be. Thank you for being you and advocating for us all despite the pain and embarrassment. Thank you.
Same! ❤
Nicely put.
“We just get up and leave the goddamn meeting. “ That killed me. 😆😆😆
My heart hurts for you, Orion. I hope you understand that you are NOT unwatchable. This is not unwatchable for me, or for us, your community. This is so deeply ... reaffirming. You're talking like I do. You look like me, today. I know that your audience has some neurotypical people, too. Partners, parents, siblings, friends, loved ones of autistic people wanting to understand and help. But they don't understand that sometimes, autism looks like this. Sometimes, we are astounding and eloquent, and other times we are angry, frustrated, or heartbroken to the point that words become totally useless and it's easier to just say nothing at all. We are always, however, burning with passion. We deserve to be loved, respected, and heard, no matter what we look like that day.
What you went through... I don't think you should be embarrassed. You had and have EVERY. FUCKING. RIGHT. To be outraged. I cannot believe that a group neurotypical politicians got together and thought that they somehow, someway, knew better than an AUTISTIC MAN, a HIGHLY EDUCATED AUTISTIC MAN WHO HAS DEDICATED HIS LIFE TO TALKING TO AND HELPING AUTISTIC PEOPLE ... *sigh* how could they think they would know better than you how to talk to - and hear - autistic people? Why would they think we need to talk like them, when this is the whole reason we are hurting to begin with?? How could they possibly believe that the way to help us is to continue forcing us to adhere to their expectations? On our day to be heard? On our day to be us? Holy shit. It's absolutely something to be angry about.
They don't want to help. They want to say they "tried." They want to say that we can't be helped. They want to say that we are not compliant. They want to say we won't accept their help. They won't say that an autistic man tried to help THEM understand how to talk to us. They'll say we couldn't do it. They'll say we didn't try.
Love this comment!! So accurate in so many of my experiences
Yeah, I love this comment too. I can relate. We also have to remember we didn't see the whole interaction for ourselves. And some recognition for the challenges that autistic people face, in the form of a government forum.... is better than no recognition at all. It's the same for every group that struggles in society. In fact, it's the same for all of us in society. Things move and change slowly, unfortunately. Progressive, pro active, real change and real policy implementations take time. It's extremely frustrating the way governments and bureaucracies move so slowly and with such inadequacy. It's great what Orien is saying and doing. But it doesn't mean we all have to completely smash down on the government's forum on how to explore autistic people's needs in society. It's not like they would of purposely put all that time and energy into organising that forum to intentionally hurt or to intentionally do nothing. Constructive criticism of the event is fine. But completely attacking the forum and running it down entirely, isn't a realistic or mature approach. I've seen alot of that in the comments on this video.
Brilliant response - just what I'd have written. 👍
@@eviefittell2937I don’t agree with your statement that any recognition is good and means the government was well intentioned. The possibility of holding forums or test groups or whatever means of gathering information, to then claim that autistic people aren’t compliant and are receiving adequate accommodations and being difficult as an intentional way to deflect further needs for government interventions is definitely there. The term Asperger’s was created by nazi’s (who were a governing body) to determine a group of people they did not deem worth living. The Tuskegee experiments in America were branded as being helpful to African Americans and were actually a means to exploit them. Those are both extreme examples, but that doesn’t mean that governments are no longer capable of exploiting people, they can just do it in more subtle ways, dog whistle politics and microagressions exist because they are less likely to incite outrage. Autism in America was weaponized to discredit vaccines and spread misinformation about them that has a lasting impact. Correlation does not equal causation, the rise in autism diagnosis and rise in vaccinated children was most likely unrelated to children getting vaccines and more likely caused by increase of screenings for autism in schools and better general awareness, as well as vaccines rising due to education about them and accessibility. Ice cream sales and murder rates also rise at the same time every year, but that doesn’t mean Ice cream is the cause of increase of murder. I do agree that black and white thinking is bad, and to directly assume the entire forum was not well intentioned is most likely untrue, but to assume that it definitely was well intentioned is still black and white thinking and ignores the history of systematic abuse of minorities that has and still does exist in every country. It’s also incredibly invalidating to the creator of this video. Even if the forum was done by well intentioned people, if the outcome is directly negative (coming to the conclusion autistic people don’t need accommodations when they clearly do) that is something someone has the right to be upset about. And using the excuse “we weren’t in the room” is in itself a microagression, autistic people have trouble reading social cues and intentions sometimes, but that doesn’t mean they aren’t capable of registering blatant disregard or disrespect. Minorities have every right to be suspicious of their government bodies intentions especially when the outcomes hurt rather than help.
This is no rant. It is truth elegantly spoken to power. Well done.
My favorite part of your videos..... I get to see what people see when talking with me. Sometimes I hate being different but i'm grateful to know i'm not alone.
Me too. And you know what?.... I've seen neurotypical people behave in just the same way. Walk into any home, any friendship, any relationship, any marriage, any work place, and any business meetings.... and eventually we are going to see behaviours and reactions like these in most of them, at some point. I do this and have similar behaviours sometimes when I'm hurt, frustrated or very passionate about something. Most, if not all neurotypical people, will at some points in their lives.... respond in exactly the same way too.... in extremely painful, invalidating, unjust, hurtful and frustrating situations... where emotions are running high. It's part of the broader experience of being human too. It's an emotional response. Most of us have them. I wouldn't want to know anyone that didn't, to be honest. I know that meltdowns are a specific part of autistic traits. But the autistic community doesn't have a copy right on them. I think it's ok to have them. And as I said, it's part of the broader human experience too. I'd rather see that in people than no emotional response at all.❤
Wow, thank you Orion! As a neurotypical person who has struggled to understand adult autistic companions, this video has opened my eyes and my heart to melt downs I’ve witnessed and inappropriately took personally. You have done a great service to all with this video, autistic and neurotypical alike🙏🏼. Hats off to you my friend and again, thank you so very much for the hard won insight👍🏼.
I’m finding it very hard as an autistic person how someone who is not autistic struggles to understand autistic people 😔 it’s one thing that makes me very sad. Because I give physically and mentally everything to meet neurotypical peoples expectations and try to understand them and try see things from several angles to make them comfortable yet autistic people don’t get this comfort back. But autistic people are the ones who are labelled with “lack of empathy “. I think very often it’s the other way round
… and thank you for trying to understand 🌸
I apologize for my ignorance😟@@adventuresofdouglasandwall1553
@@adventuresofdouglasandwall1553 hear hear! so well put.
I needed to hear this right now. I'm autistic, in a relationship with a neurotypical partner who NEVER took the time to understand me. So much so that last month, less than 48 hrs after getting out of surgery I was told I'm worthless and that I should be sleeping on the street. He left and I've been COMPLETELY alone taking care of myself post-op.
This has been, by far, the hardest month of my life.
Seeing your comment gave me hope that there are people out there who are willing to understand us and not assume that we're ill-intentioned monsters ❤
This is one of the best videos I've ever seen. I'm Autistic (late diagnosis), but the whole way though the video, I could not stop smiling and laughing! The whole time I'm thinking to myself, I'm not the only one who is like this. The way you explained things, got diverted and frustrated, it was like I was looking in the mirror (but not with the same reflection). Thank you for making me feel included and not alone! 😃👍👍
I was cracking up, with tears in my eyes, for nearly half of the video. The, "OMG, that is sooo something I would do" kind of laughing at myself.😂 I hope he does more of these.
You are making so many people feel heard and understood and not alone. You are very appreciated.
Definitely! 💯👌
Definitely not unwatchable! You sounded just like me and all of those frustrations made perfect sense. But, we all know letting it rip like that always offends the powers that be so we all have our own little disclaimer filled with apologies and regret. 💕
Trying to get an autistic person to have a conversation using NT rules and conventions is like trying to put the proverbial square peg in the round hole.
Very much, is the massiv problem with diagnosing autism too, miscommunication
@@SingingSealRianaoh yes! It’s excruciating sometimes!
I was having a hard day and told our family therapist that I just wasn't going to make eye contact and thanked her for her understanding. My wife was mortified. It was eye-opening. I tend to try to make eye contact just because it is expected, but don't worry about it much. I never imagined intentionally not making eye contact would have such a visceral reaction.
I regret making my wife uncomfortable. But man, that was a wonderful feeling.
You went. You TRIED to accommodate a forum … run by NT’s. You did it.
It was a miserable set up BUT you gave it a go! You are an example to all of us… to keep pushing ourselves to attempt the “impossible!”
Your live video has shown all the deficits of the forum - and hopefully they will adapt it.
You are human. You were frustrated. Thanks for sharing! It was just a really crap setup.
Your live talks are my fav because I so relate!!!
I particularly appreciate the idea of dysregulation. I melted down in front of important people a few months ago. I was embarrassed. My wife (who is also autistic) said "you didn't say anything that wasn't true." She was right, but the delivery was uncontrolled and made people to not want hear me. They wanted me to be wrong because of my delivery.
I saw the same thing in your delivery. You didn't say anything untrue, and I agreed with all your points. It was dysregulated.
Honestly I think you were right. The meltdown just yanked off the regulator.
I like the unfiltered videos! Usually you just see the regulated and well functioning side of autistic content creators. It's very refreshing to see the unfiltered struggles that they go through just as any autistic person. We love you, Orion!
The solar flare analogy…I could relate to that. When I was working on my masters degree program I once became so frustrated while on campus, I threw my books and notebooks against the wall with a loud bang. I had been walking with a classmate, and it must have been out of the blue to her. I’m glad no one else was there to see that.
Good way to loose friends and lovers.
I was squirming hearing your story only because I can relate on so many levels with my own experiences. I too would have had the same experience of frustration and after reflection, you can see that this system was doomed to fail as it was unrealistic for the intended participants. Thank you for your honesty and your passion for wanting to make a difference in this world. Much respect from Adelaide
A solar flare is so accurate. It's a build up that spews out. For me that looks like flappy hands, then crying while "coping", then hysterically crying while covering my ears, then hours and hours of sleep while wearing earmuffs.
What a relief to finally hear somebody explain so clearly and honestly about trying to get autistic people under time constraints to answer questions without a) going off on a personal tangent and b) triggering other people as our voice rises and we start speaking faster. I found myself nodding over and over again as you were explaining what it's like when neurodivergent people end up in a group discussion. Soooo much truth there. "We'll just get up and leave the goddam meeting. We don't care about special times." AMEN!!!!!
I love these videos they make me feel less alone and valid.
This is one of the best youtube videos i have ever seen. I will never forget it. Thanks so much.
These are my favorite videos. I can't stop laughing when you said "stand by for a solar flare".
I just swore at a priest during a funeral if that helps mate 🤷♂️
You win lol I got banned from one ! rejected from the grave!
😂
🤣🤣🤣🤣
Hahaha
I just get verbally attacked at funerals because I don’t cry. I try to avoid them these days.
Thank you for showing me the unfiltered you. I saw a lot of my husbands challenges in this video. The more I watch you the more I'm starting to understand him. You are a very important man, keep sharing your thoughts and insights. Cheers
Possible solution for the "conference" thing: classic Survey Monkey.
-open the survey 2 weeks before the live discussion;
-make it easy on a desktop with a large monitor;
-present blocks of 10ish questions/ topics for discussion on each page;
-allow backtracking between pages (don't permanently "submit" answers until the very end;
-set a word limit in each response box.
This will allow folks to organize their thoughts into the discussion, cut-and-paste to ensure everything gets said (not too many times), know what's going to happen, process before sharing thoughts (limiting backtracking) and change their answers accordingly.
Sorry to say, but that tangent about the sun had me in stitches - felt like I was watching myself 😂
Orion, THANK YOU for sharing this!!! Also, I love that when you got disregulated, you just infodumped facts about the sun at us 😂😂😂 LOVE IT.
I JUST had a public meltdown last night at work. My schedule was changed AGAIN last minute, and I had already had a really long weekend where I had to train a staff for 12 hours straight, had to deal with accusing guardians (I work in a group home), I was left unstaffed when I thought I had staff, I left my breast pump at home and thought I was working 36 hours straight so I drove 45 minutes home and 45 minutes back to get it so I would have it overnight. Then when the staff FINALLY showed up after leaving me single staffed all day (he was scheduled to work with me during the day), I was able to pump……and then I dropped my bottle of milk on the floor and just started crying. The other staff was like “awww Natalie, you can just go home.” I replied “I can’t, I’m doing the overnight…” and he just says “why?” And for some reason I just KNEW this was going to happen (we were double booked for the night shift, which has happened MULTIPLE TIMES). I just lost it. I IMMEDIATELY start hyperventilating, crying harder, slamming stuff around, raising my voice. I ended up just having to leave and get away from everyone because I didn’t want to scare my clients and it was only going to get worse. I had a meltdown for a full hour. It was so embarrassing, exhausting, frustrating. I COULD NOT control it. And then when I came back this morning to relieve him, he made a joke about how he could report me and get me fired, because he doesn’t understand that I had an autistic meltdown, even though I said it multiple times.
My co-workers think it’s like, a joke or something when I say I’m autistic. I have to literally be like: “I’m autistic, like some of the people we support”, and literally name autistic clients we support. He thought I just lost my temper. It’s like, yeah, I lost my temper, but it was after being pushed to my socializing/sensory/last minute change limit and I just snapped. I had been holding off a meltdown all day and between losing the milk I had waited all day to pump and then having my schedule changed AGAIN last minute, I just snapped.
And now I’m back at work for another 14 hour day, single staffed with two clients, one who is full care. I’m also the lead so I literally do EVERYTHING for the home. The grocery shopping, the doctors appointments, all of the paperwork, all of the communicating with the guardians (who think I’m like, an indentured friend that they can dump THEIR ENTIRE LIFE ON). It’s just like. I SNAPPED.
You are amazing! I could never, ever begin to do what you do. I took the easy way out and decided to work with dogs. Then I took it even farther and started my own business so I could interact with even fewer people. Just reading what you wrote was enough to stress me out. I could never accomplish that. You are truly amazing, give yourself credit for all you do AND you help so many people as well.
😮 Good God!! No Wonder you had a meltdown!! You have been trying to do the work of at least 3 people! And since you said you had to pump breast milk, it sounds like you have a baby at home to care for, also a full time job! You work in one of the most stressful, short-staffed type of jobs there are! I would bet you are exhausted constantly! Sounds to me like you were completely justified in blowing your stack!
@@autodogdact3313 😭😭😭 thank you, reading the replies means so much to me. I’m feeling a lot better now, luckily I have really good support at my job. I love it, but it is difficult sometimes. It’s not my even my clients that are the challenging part, they are literally perfect, it’s all the crap that comes with the job, like the short staffing and the poor management. But thank you again for your kind words! That was a rough weekend 😂
@@joycebrewer4150 😭😭😭 thank you for your words, yes I have a 10 month old at home (first child) and I had to jump back into full time work (but we’re short staffed, so often I work 60 hour weeks) to support us 😭😫 LUCKILY even with overtime, I still manage to get 3-4 days off a week because I work the overnights in between my shifts, so I have LOTS of time to decompress after my week thank goodness. This job isn’t as hard as a lot of jobs, persay, but you are managing and caring for people and their homes. And it’s an important job. I put my all into it for these folks and it’s hard when you don’t have proper staffing. You find yourself trying to do everything instead of delegating because stuff like doctors appointments and meds are important and you need to make sure they get done right! Anyways, thank you so much again!! I love this community, it’s so heartening to come back to comments after a few weeks and find all these kind words and people understanding and giving empathy lol. I’m literally sitting here pumping milk 23 hours into my 38 hour shift 😂 but tonight I’m off at 11p and then I’m not back until Saturday at 9a, so WOO! Lol.
You are amazing! You explain things so well. You are helping me in communicating with my autistic husband. I really appreciate it. I’ll let you know how it goes in future.
Omfg bro the sun analogy was pretty damn good
At the 16:47 min I had to pause and just laugh out loud!!! 🤣 “Never in the history of the world has an autistic person been able to answer a question succinctly, quickly, and time sensitive.” HAHAHAHAHHAHHAHA 😂 and then I had to replay it twice to make sure my quote didn’t have errors and then a final third time to laugh one more time.
You seem so normal when unedited. I guess my whole family is neurodiverse as autistic and adhd combined-ish. Instead, I need to see how neurotypicals act in these situations, lol.
Sorry that you had to go through such a frustrating experience. And thank you for sharing it. For me ("not autistic") that was very insightful and understandable. The concept of zoom meetings under time pressure and with many different people is extremely frustrating even for the most patient neurotypical person...."modern" life in general is not easy for anyone. At least you were able to learn something through this experience. I love your channel. Keep on. Greetings from Switzerland 🇨🇭
“Consultation period is a croc”. ‘’ my whole life is walking around with a disclaimer before I say anything”’. Again put in the brutally honest way that is perfect and priceless. I feel your agitation in this video. Please trust me, so many of us hear you ❤ that whole experience sounds so counterproductive. This is more a reflection on the powers that be, not you.
I absolutely love this video, your raw communication is actually super calming and a really satisfying flow of information. Its so nice to listen to someone one the same wavelength as myself.
I was thinking the same thing. In fact, my neurotypical fiancee was getting stressed out trying to keep up, and I found the added details satisfying! 😂
The session was nerve wracking .
To lead a group of people whom live with Autism ,
You found that you had a huge learning experience in authentic Autism spectrum disorders.
Now you realise that communication in a strategic direction does not necessarily mean it will work for all.
These interview interactions would be a great opportunity for learning how to approach understand and assist
In tangible ways 😊
Thanks so much Orion - I'm sorry that you had to go through this, but its helped brilliantly to demonstrate autistic meltdowns. I'm in my 60's and was diagnosed about 5 years ago (explained so much 😂). I'm struggling with meltdowns at the minute and you've made me laugh and realise we're not in this alone.
Thank you for being so real. I can really relate to the embarrassment of having public meltdowns. Sometimes the worst part is having to face the people that saw the meltdown again.
Thank you so much for this video and for choosing not to edit. Watching you has helped me understand where I go, how I feel, how I behave, even when I'm not triggered. It's absolutely amazing to see this video compared to your others because your edited videos show just how mind blowing masking can look, how 'normal' we must also appear to others. I work with people daily in a high stress environment and by the time I Friday comes, I understand why I'm so exhausted. If I could just be me and be this candid and authentic within my work place without being considered 'weird', 'rude' or 'overly emotional' I'd definitely have more energy 😂
Anyway, my point is, I appreciate this. Thank you
Thanks for the service you do for us in the ND community Orion.
I believe that maybe it would have helped to give people the questions and themes in advance and maybe even give them time a day before, so that they would be able to process, think and maybe even discuss them beforehand. How is one supposed to answer something in a short way if they also have to process and think about it at the same time? They could've written down their important parts or conclusions and then shared that instead of trying to get to the core while at it.
You just described what I mean when I say 'my pinball brain'!
I can only answer from my perspective. And my answers do NOT come from nowhere.
This is honestly the most human and relatable autistic video I have seen on TH-cam. I’ve had a week of this and I can’t tell you how validating this is. I know it sucks, and I’m so sorry you have these meltdowns, but I can’t thank you enough for sharing
Well stated.
It is indeed difficult to watch your content sometimes, but that’s why it’s so important. You won’t always be right about everything, but if we’re going to be heard we have to enter the arena anyway. Thanks for persisting.
I genuinely enjoy your unmasked personality Orion. I think you’re incredibly likeable tbh. ✌️💕🌻
Thank you! 😊
I'll spare everyone paragraph upon paragraph and leave it at I am glad you shared.
Aw, I’m sorry the world has taught you to think your unedited self is unwatchable. I actually find this better, or at least easier to relate to, than your other content. I feel like I better understand you and how you think. Watching this will actually help me watch and understand your edited content.
Also, thank you for sharing about meltdowns. So much terrible meltdown content out there. It’s relieving to actually have a respectable resource.
I am so sorry that you had to go through that. But I just wanted to say that I think you did a good job and I am sure you have made a difference and helped people see what autism is really like.... remember that. Having people see us for whom and what we really are is very important. And I also got a few laughs.... keep up the amazing work my friend!
I have to go through this on at least a weekly basis, during meetings with doctors/school/DDD/etc., when I’m trying to advocate for my son’s needs. I try to tell everyone involved that I need the questions/talking points ahead of time and need to be allowed to communicate through writing. My best solution, so far, is a texting group/chain where I discuss or respond to issues over time, and then once each month we have a virtual meeting during which members of the CFT, often the NTs I trust, will “translate” my messages/meaning from over the past month to the relevant authorities in the meeting. If I chime in, it usually comes off as a rant, but this is rare now that I have some amazing “translators” who are also caring advocates for my son (and me, when relevant).
Not unwatchable, very entertaining, and visually hilarious (not you, ok, maybe sometimes you) but also the pictures in my head of some autism conference frenzy. Me and my inappropriate humor having a grand time together.
I love your digression into the sun! First I love astrophysics (I was required to take a since class, any class, so chose astrophysics because I agree with you: it is fascinating and too few people have a clue. It also gave me a hugse belly laugh because it is quite entertaining, and I do that, and forget my train of thought, and I teach, so I was imagining the class full of bewildered faces I see when I do this I felt like the Queen of Rabbit holes, until I learned I am autistic and met my fellow people and found out I am just the jester.
I've been questioned about my life of disclaimers by several people. I feel your pain! The bit about lengthy over-explanations/time constraints as both hilarious and triggering. My doing so seems to make everyone who (allegedly) loves me *so angry* and I get incessant criticism about that.: I am pedantic, lecturey because I an seen as talking down etc. But I cannot speak another way, I cannot process my thoughts if I don't do that. I have tried to explain that to the best of my ability. So then I stay quiet and I get "why are you so quiet? Are you angry at me? What is wrong with you!?" Argh.
"I am these people" I wish more people had this honest attitude. Huge appreciation there!
[It is not surprising you bumped your mic. You express yourself as physically as a French/Italian person. Try hovering your arrow over the scroller-bar-thing ,and slide it. It's fun to see your hands waving about-in a really good way. Were you triggering yourself with your memories? While funny, I also felt like you needed some kind of tight squeeze or whatever helps you breather, because you obviously care so very much that even the memory was overwhelming.
I'm only 1 min in, and as a fellow Autist I'm just going "Ohhh nooo..." And feeling for you, at the mere mention of a public meltdown. :/
Even when it happens to me at home, in front of just my family, I always feel embarassed afterward, so I can just imagine how that would feel in public. Good on ya 4 sharing about it tho, it's so important for all of us (especially NTs) to know about! 🥰
You might say this is unwatchable, but I find it very enlightening and helpful. I really appreciate you.
This is brilliant.
This unedited is great, shows how we actually have to operate 🙃
One of the worst public outbursts for me was... drum roll... at a POST OFFICE!! One agent told me to address my mailing tube, and he would help me tape it shut since I was from out of town and had not the acoutrements to finish the wrap. By the time I got back to the counter, another agent was open, but wouldn't assist in the wrapping. Then I told him if that was the case, I didn't want to mail it after all, but he reminded me I had already ruined the tube for the next person and of course had to pay for it anyway...
I won't even write here what ensued. Wanted to bring Going Postal back in style that day. 🤬😡🥵
(okay, so I paid, while crying hard) 💧
Can I say, thank you for being yourself, for sharing your raw, unedited, unscripted, account of your public meltdown (as you put it). Your account was very interesting and insightful, even as a neurotypical person, who works in the disability sector. This was the best explanation/situation account, to help me get more insight into Autism, and how things like time constraints, group pressure, trying to answer questions succinctly, etc are difficult and how us neurotypical people need to be more open minded, empathetic, realistic to provide alternative options in situations like you just experienced (ie online forums, meetings, etc)
I'm curious if you could press rewind and do it again, in what ways would you suggest changing the format, alter the approach, the forum, layout for a more positive outcome in your eyes? To help others who may have to arrange online meetings, etc.
Anyway, well done on your self reflection and subsequent light bulb moment. Amazing to see how, although triggered, you learnt from this experience. Not many people 'even neurotypical' can self reflect as well as you did in this video. 👍💯💖
I think we need to allow for a little grace here.
To be fair, the neurotypical government officials facilitating this forum on autistic needs were probably unaware that the formatting wouldn’t work as planned. I think the best intentions were there; wanting to provide the community with a platform to voice their opinions about necessary change. They probably thought having you, an autistic person yourself, as moderator/host was not only inclusive but also important because they wouldn’t want to be seen as having a NT speak for the autistic community. This backfired for the exact reasons you stated in your video and reveals that future forums should probably be led by NT’s with proven expertise in and understanding of autism, and that you should be an incredibly valuable contributor to the discussion instead. I agree with others about a pre-forum questionnaire being utilised as well.
To take a positive perspective, we learned something from this experience and can do better moving forward.
Thanks for being candid 😊
Seemed like a perfectly rational reaction to me!
It's such a pleasant feeling watching you speak the way I get to speak only when I'm by myself, pretending that someone would have the patience to listen to me. I'm 4 almost sleepless days deep into obsessive research about autism and just can't believe that people like me actually exist. I absolutely love the way you express yourself and I wish I could do that too. Lots of love!!
Im sorry that this has happened Orion I totally understand where your coming from I have had a couple of public meltdowns but I always try to get out of the situation that makes me uncomfortable I appreciate you for being honest
This was remarkable. You demonstrated the problems with this type of format and many similar formats cooked up by NT world. I've been in these types of groups for information gathering (not re autism), mostly at work. There's no way I ever got heard and if I did come up with a genuine comment, people just looked at me like I had 2 heads. I just learned to avoid them. I also hate the flip chart method or the sticky notes method. Always with time pressure. What they get is superficial at best, often harmful. Online doesn't make it any better than the flip chart thing.
One thing about this video that I appreciate is your non-linearity. In my opinion, it's more valuable to circle around a problem/topic and come up with something genuine and workable than it is to do the "stopwatch" method. This video made be want to both cry and laugh.
Right now I'm recovering from a too large family gathering over thanksgiving. I probably came closer to publicly melting down in that setting that I ever have. I didn't, but it's taking days alone to undo the damage. If people want to visit with me, it needs to be only a few people with plenty of time. I don't think they would like something that suited my "style," because we just don't fit into such structures. I don't fit in most of the world. Recognizing this is valuable.
This is about the most valuable video you've ever done.
Unedited, thank heavens.
Whenever I am called on for a consultation on autism, which happens regularly, I will ask the organisers to watch this beforehand.
Thanks again, Orion.
This is literally why I did not want to have anything to do with the strategy or any kind of advocacy and working with the government. I take my hat off to you for doing it Orion because it's a nightmare and I agree that most people then feel attacked or unheard when you try to move people on or even when it's all done and then it ends up all falling back on the administrator aka in this situations your head. Nightmare! I don’t think you failed. Its the way these things are set up. So please don't blame yourself
Never feel like you have to mask here. This is your channel and we are here because you are who you are. ❤
There's still ten minutes left andnI'm eager to get back to it, but I wanted to share this thought that's burning hot inside me.
What you're describing other people doing, saying you have done it, I know I've done it plenty, and I facilitate online peer support groups where I have to navigate a delicate balance between letting people have the space to unpack something that's going on and giving everyone else a chance to participate...
I believe all of this comes back to trauma.
And I believe the majority of autistic people carry trauma.
Until the people who want to study us for our own good become truly trauma informed (which includes being directly informed by traumatized people and a double-serving of cultural humility on an individual level) they will continue to increase our overall trauma loads in their quest to reduce it (they think they're measuring quality of life but I think they're measuring the outward signs and symptoms of lowered trauma burden.)
Maybe it's time for some of us "often studied autistics" to come togerher to develop a curriculum for learning how to respectfully study us.
Omg i'm at the end of the video !...i'm shocked by what they did to you and the group. Can we see the results ? With your comments in mind that will be a masterclass about autism. This video is priceless because so much helpfull. Thanks for unmasking with us 🙏 I hope you realize how helpfull you are🙏
Oh dear, sounds like it was a nightmare. Our reality seems to be such a difficult concept for the NT people to grasp. Thank you for putting yourself in such an uncomfortable position for yourself to try and make all of our lives better. You are truly appreciated
As an Autistic adult with an Astronomer Dad, this was so spot on. Thx for all you do, and your bravery sharing with us, not just providing info. It all helps, except that I don’t want you to always put everyone else first!
I'm sorry you feel that way. You shouldn't have to hide who you are for others. You did nothing wrong at all. That is not a proper forum for anyone. These topics deserve proper time dedicated to them.
I have to laugh at myself because, while I found this video overwhelming at times and had to take breaks, I am EXACTLY this intense. Diagnosed ADHD as an adult, and only in the last couple of years suspecting I also may be autistic. It definitely put my biggest public meltdown (at work, because of course it was) into a somewhat different perspective. Lots to think about. Thank you for this.
I feel ya, I think that the organisers should have allocated a series of workshops to talk at length per subject. Hopefully they will do that in the future. You did your best, I really appreciate your unmasked approach to telling your experience. Greetings from Shropshire UK
Sending thanks and best wishes from the Isle of Wight, England. I really feel for you, since Autistic people do have empathy after all, and hope that there are better days ahead.
Thankyou. This is what we need. No vanilla. Real. PLEASE. This is what we need to hear and see. Im sick of the profit being made from quirky colourful ojtfits and little weird behaviours and stim toys during ted talks.
We need this. The real and validating.
I feel this completely.
What a nightmare. I totally felt every minute of this story. Thanks for giving us a voice!
Your summation of consultations was spot on, Orion. They are frustrating. It's a game. My job often involves writing submissions to Govs and I know, when writing submissions and getting them approved by the institution's executive, that they probably won't be genuinely considered, even when the points made are important and beneficial, not only for institutions and individuals, but for wider society and the Gov itself. It's frustrating the money that goes to waste in playing these stupid games.
Thank you for sharing all these details about your experience. I learned a lot from it. - late realized autistic adult
I loved and appreciated the unedited video. It was raw, real, insightful and very informative. I am a neurotypical person who lives with family members on the spectrum and this all needed to be said!!
Thank you for your honesty 🙏🖖
1. Your explanation of a meltdown was really helpful for me, thank you.
2. I think un-masked you is beautiful; in that we get to see your mind in its splendor, with complete clarity; through your speech, the way that you move (air painting your thoughts), & watching your personal.brand of self regulation. We get to see you not just as a person, but as an authentic soul...& I think that's beautiful.
3. I'm always proud of people who practice emotional courage. I do my best to practice & live in a state of emotional courage regularly. I just want to be fully authentic...to just BE...to simply exist as my true self, you know. So in seeing you be brave enough to show yourself unmasked on your platform makes me happy. That's very healthy of you, I think (in my humble opinion 😊).
4. & Finally, having to disclaim yourself while speaking to people DOES suck & I'm damn sick of it too 😑😂.
Thanks for making this video Orion.
A few comments:
1) I read about a third of the submissions to the original Senate inquiry that led to the plan of having a National Autism Strategy. A lot of these submissions, mainly by autistic adults, were very insightful. So the information is there. I am not sure what more the government is seeking from the type of meeting you described. It would only make sense at this point to go into greater detail rather than seeming to start again from scratch, except to say that it's an opportunity for more people to participate.
2) I agree that autistic people are usually very long winded and there would be no point in a group meeting with minimal time available.
3) When the government announced that the funding for the National Autism Strategy was about $2 million, I thought that money would not go very far. And so either the process would be rushed or a lot of autistic people would be giving a lot of time for free. It looks like it's the former.
4) I don't blame you or anyone who was there for having a meltdown. It makes sense under the circumstances.
This video is unbearable in the best way. I can completely relate. This kind of situation is SO frustrating and even agonizing. I feel for how much it affected you. The disclaimer part is also so incredibly relatable, it's so annoying to have to continuously tiptoe around everything all the time. Thank you for sharing your thoughts and experience.
Sorry, Orion, for your pain, but again, i have gained so much insight into what is going on inside my daughters brain. My heart does ache for all autistic people.
Thank you for being a part of the consultation and for all the advocacy you do behind the scenes. Even though I criticise the Govs approach, the fact that you were selected to be involved in chairing a consultation group, says that perhaps there is a slight glimmer of hope for us after all. I participated in WAs consultation on Disability Legislation recently. It was much better than I expected because the Department of Communities own staff with disability ran the online session. But the proof will be in the policy that eventuates and whether the powers to be listen to and genuinely engage with our feedback. I hope so. Positive change is needed.
Autistic here - Sounds like an experienced (meeting/group) Facilitator(s) could have been really useful (maybe for next time). Facilitation, especially without any training, can be really tough and stressful. What you experienced (especially with the feeling of so much riding on this meeting) sounds totally reasonable.
I worked at a company for a while that trained people in meeting facilitation (among other things). There are a lot of preparations ("desired outcomes" - e.g. a list of what you want to accomplish and how everyone will know if the meeting was successful i.e. "Top 5 things we want allistic people to know about autistic people" (something you can accomplish in the time frame), plan "how" you are going to run the meeting to help the group reach this/these goals - e.g. brainstorm time, sticky notes, pre-work/questions in advance - so important for me to process prior to needing to respond! - post-work, etc.), facilitation techniques, "preventions" (e.g. having "parking lot", setting mutually agreed upon "ground rules" prior to start, etc.), "interventions" you can do in the moment, etc. that help make the time less stressful and more productive. Even simple things like setting meeting roles in advance - someone to take notes, timekeeper, someone to create the agenda and the "how" the meeting will run etc. (that can be collaborative/multiple people it doesn't have to fall on just one) ...I find the structure of these kinds of meetings really comforting.
Take care and thank you for the video and the work you are doing!
Oh man I'm sobbing. Thank you for doing this video and publishing it. This was so helpful. I can't even put all of it into words. I'm a very late diagnosed adult (50's) thanks to my teen getting diagnosed. I feel so much less alone, and less crazy. Thank you.
Im with you, I also have had “meltdowns” just because I’m fed up with the facade of ignorance that is the fabric of society and everyday existence as a ND in a NT world. Your candid(unedited) podcast help me actualize as a fellow human, diagnosed with ASD, ADHD as well as a laundry list of “disorders”.
I get you, about the "disclaimer" it's totally a stupid thing to keep saying. It's the people hearing you, that have the problem, it's their triggers, that they have to deal with. 💪
You are really insightful, and very helpful. Genuine and authentic 🙏 you
I love you so much more unmasked and unedited…. Your perfect and awesome the way you are… much better to be unique and interesting rather than blending in with the crowd😊
I actually cried on and off watching this just bc I respect you and love your content. I learn so much from you. And then to see the “unmasked” version, I felt like I could relate SO MUCH. And it was amazing to see another adult who seems ‘normal’ but can have all these similar experiences I have. I hope that doesn’t come off wrong but yeah. I could watch this kind of video all day long
I just want to thank you for this amazing video. First time I see one from the "unedited; unmasked; unwatchable" series. I'm gonna watch them all.
I'm a Brazilian AuDHD here and I'm sorry for your just too relatable experience. The system is broken and so are the people who designed it. I'm going through hell for almost 7 years since the perimenopause and for the last 3 I've been completely at the mercy of the health care system which is nothing else but mercyless and ruled by unbelievably stupid people. And bc of my many comorbidities and life struggles I don't have any energy left to fight them. Praying for better days...
You had me laughing out loud numerous times as so funny yet also not funny. Some very relatable points! Thank you for sharing this. It’s true, more need to speak out truthfully about adult meltdowns. I really respect those who are authentic and who share an array of emotions, not just the ‘good’ ones.
Yes, I laugh too. Not in a bad way. I laugh n smile during lots of Orion's videos, because he has such a good sense of humour. He's serious and informative. But also witty and funny.😊
I wish i had of known. Probably would not have got on but it would have been a huge insight.
I think they will see the challenges, i think this really may have shown EXACTLY what it can be like for all Autistic individuals. They will see the varying degrees of the spectrum and how individualized it really is.
I am sorry Orion that it turned out that way for you, and that it had such a costful impact on you.
I actually feel grateful that you were out front. You didn't do anything wrong. You have shown to Neuro Typical people exactly what we deal with everyday, day after day, year after year.
And how taxing it is for us.
Dude! Thank-you SO MUCH for doing this "Unmasked, Unedited, Unwatchable" session. I needed that. Talk about insightful. Watching you "raw" had that "in the mirror" effect on me, and I suddenly felt "normal."
"Man in the mirror" and then back to the serious topic...my mind also makes these little pauses of absolute comedic relief
I don’t know if it was how I was raised in the environment I was raised in or what but whenever I don’t feel heard, I shut down and it’s like I’m on autopilot. My inner voice is screaming the opposite of what I am saying. Then I relive it and I’m thinking ‘what is wrong with me?’ So I try again and am triggered and it gets out of hand. I just.. I don’t know. I was also in the middle of all fights and I’m just like “I want no part of this. Leave me out please.” Never happened though. I also feel like this video reflects me in triggered situations. So yeah. Please keep bringing awareness
Dear Orion, a thought what might help in future could be.... to ask for written submissions that will be collated and later summarized and for there to be a series of questions guiding people for them to give an opinion or response to. I'm hopeful this would give clear insight into possible improvements and government's actions to assist the Autistic Community. Plus people would have time to reflect and give a considered response. Everyone would have a chance to "have their say", and it could be statistically analyzed to show the most pressing problems to be dealt with first. I don't know if these ideas are of any help... but my thoughts are with you for the future. All the best Joseph