Autism Awareness is Unhelpful - My Friend Autism
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- čas přidán 26. 08. 2024
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Hi! I'm Orion Kelly and I'm Autistic. Please enjoy this episode of my podcast 'My Friend Autism'. #orionkelly #autism #asd #autistic #podcast #autismsigns #whatautismfeelslike
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ABOUT ORION:
Orion Kelly is an #ActuallyAutistic vlogger (CZcamsr), podcaster, radio host, actor, keynote speaker and Autistic advocate based in Australia. Orion is all about helping you increase your understanding, acceptance and appreciation of Autistic people.
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Everything you say is true. At 66 the whole idea of being autistic wasn't on the medical radar when I was a child or young adult. My doctor isn't willing to have me diagnosed because I am SURVIVING. Thriving is up to me. They don't even care to add me to the statistics of diagnosed people. I can "cope" so the fact that I am sure I am Autistic with ADHD doesn't matter at all to the "system". My doctor ignored me...and she is young. She hardly paid attention...to our USA overwhelmed system if you can survive you do not even qualify to get diagnosed.
Thriving is up to me.
None of our institutions really support us. I've survived. It's all I can say. To thrive I must create my own strategies.
It's been a tough life. But screw it...I am still here.
Good video, Orion. This may improve in another generation...as we straighten out some other things first. There are many other focuses right now. I have hope that next year after our election we will be able to make some progress forward. We've been fighting people who want to go backwards.
I am glad younger people are advocating for themselves in this way. Now that humans have the internet things have been changing. This tool didn't exist when I was a kid...don't forget how important it is to be able to speak up instantly...and be heard around the world. What an amazing thing.
That's a horrible experience. I ended up going directly to the testing places who do adult evaluations for autism and asked them about what my insurance would cover and never talked to my primary care Dr.
Just an idea for you. I've also found Mark Hutten to be helpful. He does some ASD groups which are good to help you understand more and thrive instead of just surviving.
43 and just getting a diagnosis finally and I can confirm I've been stuck in survival mode my entire life. I've got the autonomic and autoimmune disorders that prove it. You're right tho, it's not enough to just say that without the steps taken that's necessary to change things on a systemic level. I want to thrive tho.
My biggest issue with when I tell people Im a diagnoised Autistic is when they respond "Oh everyone is getting diagnosed with it that. You seem fine, you are smart and pretty. You have been married twice and have kids. Whats the big deal? Why cant you just keep doing what you have been doing?" I look at them absolutely gobsmacked like "Im sorry I didnt realise I could live any other way, I have just been surviving... I don't want to be unalive no matter how intrusive those thoughts are so I survive, hoping one day I can breath easy.... that cant be a way to live. Do you want to live that way? No, I didnt think so, so go away with your judgement and let me be myself in peace. Any time I had an Autistic trait pop up as a child it was Unladylike and I needed to behave like one. Then I usually got abused until I stopped doing whatever it was I was doing. I feel like my whole body is made out of glass and I am screaming on the inside and everything is on fire. Do you think I want to be like this? What exactly do I gain? I would love to be normal as you say. I would love to not wake up with crippling anxiety. I would love to just pick up that glass of water and drink it no matter how dehydrated I am but I am barely surviving just remembering to breath without falling to the floor and screaming while crying hysterically because I am overstimulated. What part of that sounds enjoyable at all."
Thank you for talking about this Orion!🙂👍.
I hope this video goes #viral. It deserves to be heard by millions and not just us that are autistic. This world is messed up.
Picking the day after a day where a lot of people take pranks too far (bullying), with FOOL in the name, really feels like an intentional slap in the face.
agreed! people close to me never prank me ~ it triggers the crap outta me. and no one ever should come up behind me and frighten me... that would not be funny. I feel you on this subject, its def a bullying situation. thank you
The UN is wrong. We aren't surviving. Too many of us die way too young. we die from anxiety related conditions like heart disease. We die because we end ourselves. There have been several studies that show that of people who end their own lives between 40 and 50% would merit being evaluated for an autism diagnosis based on questionnaires given to friends and family. So if you know someone that ended their existence it is a coin toss as to whether they merited a diagnosis of autism. That is a shattering situation.
Your rant was thoroughly justified! 💚
I was lucky enough to get a diagnosis when I was 5. That was back in 1980. April has been my least favourite month since the whole Autism Awareness thing started. We don't need any more awareness. We need acceptance. I was in Special Ed all through school for some subjects. Of all the kids in the classes that I was in, I was the least accepted by my regular peers. I was teased and bullied about everything from the way I spoke to the size of my head. One kid told me if I don't stop thinking so much that my head was going to explode because it was so big. I was called a Cockney even by the kids in the special classes that I was in.
You always make good points and share them in an easily understood way.
I’m late diagnosed and I can see where it comes from in my dad’s side of the family, in his mom, his mom’s siblings and his own siblings. I also think my big brother (he’d be 42 right now) was autistic. He had severe hidden anger issues and a bunch of other issues (like sleep deprivation, interoception issues so he didn’t realize when he was hungry or thirsty, sensory issues, etc) while he was attempting to own a house, own a machining company that he ran without help, and had a son, but was not with the mom. One day he just had a grand mal seizure while reading a book to his 4 year old so on the couch. Went to a doctor, couldn’t figure out why. 14 months later, had another grand mal seizure doing the exact same thing. Reading a book to his son while lying on the couch. Goes back to the doctor, still can’t figure it out. A year later, one takes his life in his sleep. I truly believe that he died from being undiagnosed autistic. From the incredible amount of stress he has under from being autistic, not knowing it, and attempting to force himself to be neurotypical like the world told him he had to be. He had an autopsy and he had no food or water in his system and his brain said that he was extremely sleep deprived. Both things most likely related to being autistic.
That tshirt is awesome and it fits you very well . And you can tell people who haven't Autisme the truth 👏 Thank you for all the hard work that you do for you and your son but also all the people around the world who has Autisme to create more awareness and acceptence and break down myth about it and tell the hard true to those people who making ore lives redundant hard .
Thank you, Orion (Brian). ha. every word you said was truth. people despise the truth, I like the truth. Im 68yoa, I will never be diagnosed. The system just basically gives me the paper chase story. im self diagnosed and you taught me what I know. My friend Autism, I try to look at it in that way. its quite simple for me to just be me, Thank God! Thanks again for 'feeding our heads', we need that in order to push thru this life.
I'm 66, was diagnosed adhd at age 54, have been on Disability Pension because of mental issues for 29 years. I am looking to get an official diagnosis of autism so I can get some help through the NDIS. I guess now I can save my money and go with a self diagnosis because the NDIS still wont accept me as an autistic person. What the hell are they doing with all the Govt funds they get? The dept is a joke
We on the struggle bus and it's not slowing down. 😂😂😂
You're so talented Orion.
I love your rants because you put some sarcasm in there that makes me laugh. Everything you say is true. At the end of the day people shouldn't dismiss your concerns with "you're being too negative" or "you're looking for perfection". I don't believe it's about making things perfect, I believe you are expressing the need for these things to actually work not just be 'advertised' or commercialised. If these people saying "we want to help", actually do wanna help, then this is not the way to do it. As always, it's all just a load of BS. I support you in many views that you bring to your podcasts and videos. Keep being a strong voice for the community, because it's really important for neurotypical people, in particular, to learn what it means to live as an autistic person and how we can all help in a practical and logical way. It also would help undiagnosed autistic people to learn of the disorder to open their eyes to their natural way of thinking being a very normal thing.
I agree with you. Why not use the money on training for educators or law enforcement & hospital staff.
52 and recent diagnosis. It’s been a long hard road. I live my favorite quote. (I forget the author):
“If not for God, I be dead.”
Hi Orion amazing video as always. Keep up the good work. I'll always watch your videos :DDD
The college I go to is stupid and they strugggle to understand how to help people with autism.
I have been in trouble there because they decided to change my routine without warning so I decided to have a slightly longer break so I wouldn't be as upset and I got told off for that.
Another thing that happened.
I was overwhelmed in the morning because it was incredibly loud (I got taken the the head of my subjects office (She spoke to me and helped me calm down) However... My TA (Teaching Assisstant) decided to write me up (I got a detention) for not turning upto lesson on time. He was too stupid to ask where I had gone. (He's messed up many times before) He is meant to help me in lessons and he sits right at the back of the classroom not helping me.
I need to be told which room I am in at least a day or two in advance for exams and several times they have decided to change the room my exam is in the day of my exam so I've been moved and that has caused me to get overwhelmed which is not good because then I got perform upto my best in exams which messes up my future.
At the start of this year they decided to advertise the college loads and caused double the amount of students to come to college than previous years, that caused teachers to have to work harder (There weren't enough staff in the first place) So now staff are leaving causeing the entire college to be understaffed. (The subject I'm learning (IT) has been hit the hardest) This has caused me to start debating weather to move to the Media courses as they seem a lot more interesting and they've actually got teachers.
I'm behind on course work (because I had stupid teachers (The one good teacher has left)
I've got 3 IT exams
I've got 3 Maths exams
So that is adding on the the massive amount of stress I've already got. I'm very sure that the staff IT has got are not autistic and have not had autism training because they don't understand at all. The two worse teachers in IT got fired) There are 2 teachers left and apparently I'm getting two more who I can't understand properly.
I'm not happy about any of it but people don't really listen to me because I'm autistic.
Thank You for liking my comment. It's made my day XD
that's a sad situation. im so sorry that you go thru that.
@@nancyziegler5724 It's fine, Everything is falling apart at the moment but I'm just gonna focus on my special interests and let the college fall apart. If I can't control it I won't bother about it.
Saturday night isn't the same without the a team
this is shattering ~ this herd of folks selling merch. with no benefit to the cause? makes me pissed. come to think of it, any type of 'Awareness Day' is bogus and somehow obtaining revenue from the population at large. think about that for a bit. its ALL rubbish. digging the vid thus far, now to continue watching...
My teen and I (both AuDHD) have been binge watching the A-Team and teen NEEDS the shirt lol. But the store keeps giving errors (for all links & even from Google search results, same error, 'store unavailable'). I doubt there's anything you can fix here, but just fyi in case you thought nobody wants the shirt. We do 😅😅
50. When I was a child my mom tried getting me help over and over. Not help given.
Awareness is crap. I say this because I never knew a 50 year old woman like myself could be autistic. Awareness shouldn't be just for the little boy who can't speak or the grown man who loves trains. Im kinda mad about it.
huff & puff, its all true
No obe seems to notice it
Anger = love (truth)
I.e transparency = freedom from conscience law (acting/religion) because it comes from the heart/truth (love/God); the soul’s imagination who’s feelings are always true/honest/sincere; beautiful
All are fools (men) except for love (God)
Fools day
i was diagnosed last October, the people that assessed me said I would be sent information on backup and support, so far all i have received is tumbleweeds. I emailed a local autistic charity and support group asking for some assistance and not received a reply, their website advises to phone which is one of my major issues, communication. The people behind this autism Awareness Month have offered me exactly the same amount of support, IE Tumbleweeds!