Autism, POTS and a Cigarette Mom - Feat. Kimmi Rhoades
ฝัง
- เผยแพร่เมื่อ 6 ก.ย. 2024
- Hi! I'm Orion Kelly and I'm Autistic. On this video I explore the topic of POTS and autism with my special guest @kimmirhoades. Plus, I share my personal lived experiences as an #actuallyautistic person. #orionkelly #autism #asd #autismsigns #whatautismfeelslike
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Orion Kelly is an #ActuallyAutistic vlogger (TH-camr), podcaster, radio host, actor, keynote speaker and Autistic advocate based in Australia. Orion is all about providing validation and support for Autistic people and their loved ones.
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This turned out phenomenally, thank you SO much!
You’re the best!!
I hadn't heard of you. I love your shorts.
This has been fun to watch. I just want you to know, Kini, that you totally look autistic to me. Want to know why? Because you said you are.
Listen to strangers like me by phill Collin’s, it will blow your mind. It’s like O, I’m autistic and there’s a whole new world for me! You rock, keep being you because we all have something special to give and your giving it.
You’re a babe!
I just want to say THANK YOU for defending self-diagnosis. I told my fiancee about 3 years ago that I thought I might be autistic. Ever since, I've dived into researching it, learning about all the things tied to it, subscribed to you (as well as two other content creators), and have found myself immensely happier in life. Autism explains so much of my life and personality. I used to think I suffered from bouts of depression but now I understand that it was just really bad burnout, and now that I know it's burnout instead, I find myself able to get through it easier knowing what helps regulate me. My fiancee embracing it helped her understand that her niece isn't just abrasive; in fact, it's led to her niece being officially diagnosed. And my fiancee has started doing research of her own to be an even better partner.
I feel skittish about saying I'm autistic because I don't have that official diagnosis, but it hasn't changed my mind that I am.
I also want to add to that thank you for defending self diagnosis. I live in Germany and I recently had an appointment for diagnosis and the Doctor said she would not diagnose me because I had childhood trauma, not that I wasn’t autistic, just too much work to differentiate and therefore „pass“. So now I’m starting to try and find a private pay doctor with the proper recent training to diagnose high masking adults.
So yeah it can be really hard getting a proper diagnosis as an adult
Personally, I think a well-researched self-diagnosis is on par with general physician diagnosis. GP may have medical/professional knowledge that can provide insight; and you can have "you" knowledge that may provide insight. They might both be less reliable than a specialist that deals specifically with Autism AND co-occurring conditions in adults, but those can be tough to find and get in to see.
Please learn from my mistakes! My "self-diagnosis" only came after my therapist and specialist both noticed my autism, while treating me for ADHD. I had avoided researching ADHD and Autism, prior to that, most bc it was too offensive/depressing to see lists and lists of all the things that I disliked/tried to change about myself or that made my life so difficult.
I just wasn't ready to accept the possibility that it was more than ADHD + "gifted", so I ignored everyone's speculation that I had Autism.
^That included my few Autistic guy friends aka the only people I could have "real discussions" w/. They each thought I was in denial, 😂 bc I had rationalized that ADHD+gifted+me "just happens" to look and feel exactly like Autism and that I'd spent decades studying people/learning how to mask, so that MUST mean I am normal. 😅 (Hilarious, in retrospect.)
After my therapist started bringing it up/explaining the criteria, I finally began my research process and began accepting the possibility. (Thank goodness!) It's been tough trying to unmask and sort out which things are Autism, which are ADHD, which are coping, which are my personal quirks, etc.
But, only my self-diagnosis really led me to understanding and accepting myself. Doing that is what let me to begin putting my life in order and try to learn how to take care of myself. (still working on that!)
If you can skip the denial and speculation phases that I put myself through and jump right into helping yourself make sense out of your life -DO IT!
You can always go get an official diagnosis, once you are ready and feel like it will be beneficial. There is no rush!
Self diagnosis is almost the only options many adults have ... and this is a huge issue .. they want adults to pay 4000 dollars for testing and stuff from a private agency .. in order to be tested here in canada through ohip u must first stand on ur head and jump through hoopz jump... than they will consider asssisting u maybe.. i feel like once u are aware of the issue its a relief . U understand urself better and there is a reason for ur struggles that mKes sense. This is a important issue we need to addr3ss how many adults could be living a better quality life with a diagnosis or the help they need to do that .. but they are essentially making it almost impossible to seek help we need ..maki g it more difficult for ppl having difficulties already . We need to start tesTing the adults who may be presenting these issues and assisting them.. it could mean their lives . Suicide is the most common among adults with autism becUae they are struggling everyday to make sense of the world and fit in and to understand themselves and mask .. its exhausting doing it alone.
It is a lonely place to live . Helping ppl get diagnosed and get assistance they need is not just improving the quality of life for individuals it is saving lives of autistic adults.... But we are not ready for that conversation i guess... because i dont hear alot of individuals speaking on it the average age autistic ppl live to is only 58.. due to stress , heart disease epilepsy ...but guess what high finctioning autistic ppl usually die frm ....
Suicide . When i heard that i was not surprised tho . Imagine living everyday in a constant confusion.. and not underatanding who u are in this world .or how u can fit in properly .. How overwhelming that can be for an individual suffering alone in their mind and working everyday to present themselves like everyone else thinks they should. This is a serious issue . We need to start treating it that way . Self diagnosis is sometimes the only way to feel some relief frm ur own world because it gives u an opportunity to help urself even if ur unable to get help u need frm professionals u can assist urself to learn new ways to cope and live with better success in achieving a normal or successful life .
Agreed x100.
It blows my mind how much Kimmi's story mirrors my own. 47m and only recently learned I'm AuDHD with POTS. Thanks to you both for this. Take care.
This is monumental! Orion Kelly AND Kimmi Rhodes in the same video!! I love both of you soooo much!!!
Thank you Kimmi and Orion ❤ Orion you are that "one page" for alot of us, the page we came across not knowing we needed! Thanks for being there for us!
I also want to add that in America it's hard to get an autistic diagnosis, especially if you don't belong to a higher socio economic class. Personally I have been fighting for an official diagnosis, but since my economic status is different and I have different insurance, I can't seem to find a doctor who will take me seriously. I've been misdiagnosed as bipolar and trying to get anyone to help me with a reassessment is feeling impossible. But I will say that you can't give up..... I'm going on 1 year of research etc. and I am still facing a lot of resistance from mental health care and any kind of "professional" help...... and I definitely relate to being"tried" I'm 42 and feel like I'm 80 every day. But all we can do is just keep going and keep hoping that it'll get better.
I understand. I’ve been saving from my disability to pay for my upcoming assessment.😏
Are you AFAB? If so, that’s why you’re likely struggling to get them to take you seriously
I found out ABA centers for America started having assessments. One of my neighbors sons got in in less than a month. Also there are a lot of unemployment programs that will help find an assessment to remove barriers for employment. In NH Vocational rehabilitation funded mine at 38 years old for employment support needs
ABA is a money making scheme based on cpnversion therapy, they groom children to teach them masking and compliance to authority.@@amberjeanne9308
I hope you can find meaningful help & resources soon.
For what it’s worth, self diagnosis is completely valid, and even just having the language to understand your experiences can be life-changing. You absolutely can identify as autistic without a formal diagnosis. Still though, I understand wanting to be taken seriously and even “validated” in a sense by a professional. I hope it gets better
I almost bursted out into tears at 32:37 from the relatability. I remember asking my dad why I was in trouble at 7 y/old (genuinely didn't know at the time) and he'd pop me in the mouth for "back talking."
Such a good video all around regardless 👍
🖤🖤🖤 I love how when I'm specifically drawn to a creator I find out they're one of the tribe. Makes me feel seen and loved. Thanks for the video Orion and kimmi 🙏
I'm SO tired too Orion, Your videos help keep me going, Thank you for them!
Wow! Kim! Can I just say first off how I relate to you on so many levels? I may not have POTS but everything else really just hit me hard! This was probably one of the most relatable collabs that Ive ever seen from Orion. I balled in tears because it felt so relatable! Theres a ton I want to say but Ill bring up a few things. I am currently still working on childhood trauma from my family (especially my mother), as well as other past traumatic situations. I also wake up not wishing to be dead (suicidal) but wishing not to feel sick and tired of feeling sick and tired. "Hmmm...wonder how the world is gonna treat me today? Am I gonna get cooked again?" you know?! Please keep going and share your message to the world! Again, what you said means more than you know! I needed to hear this today! Thank you for collabing with Orion, and thank you for being you! Much love! 💝
I think as Autistics we behave differently to the death of a family member compared to other people. When my mom died about twenty years ago, I barely cried.
it took me forever to cry about my mom… like a week after the fact. Honestly, what I was really crying about was what she did to me and the relief that she was finally gone.
@@kimmirhoades I'm sorry to hear that. I hope you're doing better now.
I tell people there is no wrong way to grieve. Just because you don't see someone weep, it don't mean they're not hurting. Geez, people, stay in your own lane. Focus on something other than what you think I'm supposed to be doing. Good luck.
@@kimmirhoades I hear you , my narcissistic mother crushed me as a child. I grew up in South America and over there … they took me to shamans and witch doctors and slept with a pair of scissors under my bed! I can make a whole comic/ zine about all her abuse from verbal to physical and beyond. Thank you for being You !!
What a lovely conversation!
Thank you Orion and Kimberly!
I’ve questioned POTS through many years for myself. After having an M.E dx for years.
Coincidentally I’m on an neurodivergence assessment pathway for autism.
My daughter is diagnosed autistic and that was my lightbulb moment 💡
Take care both of you and keep creating! 😊
⭐️⭐️⭐️⭐️⭐️
Highlights: @33:00 "Smartypants" 😅, @38:38 "No Justification Needed" ❤, @50:00 "Let's Change The World!"🤞
What an excellent and engaging interview. Thanks both
Im on the spectrum so is my son , i got diagnosed with lupus snd pots end of last year you gotta laugh or you'd cry💯❤️
Being my mother to my kids has always been a huge fear for me. I tried to go in the opposite direction but apparently that made me a crappy mom too bc I’m “too understanding”
Thank you to both of you. I also had a crappy relationship with my mom and also my sister who became her duplicate, both were very narcissistic. My mom is still alive but we don't speak. Since I was a child I loved and honored her, I did everything for her. I took all her nonsense remarks about me because she'd say "I know you better than you know yourself" So I thought I deserved her constant criticism. I haven't talked to her in a while which is mutual because she realized in the last 10 years that she has zero control of me (I'm 49). I have thought when she dies I don't think I'd care, I feel horrible sometimes for thinking that but she has been so toxic to me and to my children. Anyways, thank you for talking about this.
I really enjoyed that co-lab. I’m not a tic-toker so was unaware of Kimmi’s character but I’ll definitely check her out on TH-cam.
Thank you Kimmi, for speaking out, Thank you Orion for being a part of making a difference which truely is the heart of being an autistic creator!
Your Star of Orion, Clare
I have been waiting for this!!! I can't believe it's been up for 9 days!
I adore your dark humor, Kimmi. I really appreciate it coming from an emotionally abusive and neglectful home myself. People get on me about my "inappropriate humor" about my hard life and my mental health conditions. But i found it's the most productive way for me to heal, or I would be crying all the time, and I've done that for too long.
You both have touched my life so deeply. You've helped me discover who I am and accept that person. You've helped me to face and heal deep wounds.
Thank you both for being so brave and open with all of us. You are paving the way for a better future.
Thank you for this wonderful conversation. I loved how Orion validated Kimmi in her self diagnosis. Just because a profeasional did not give a paper declaring what she already knew to be the case. That was powerful for me. It showed me my insights matter. My understanding of my own situation is real, and it is okay. You are both beautiful souls. I am some rando on the internet you will likely never meet, but know that your work has made a profound difference in my life.
I have autism and POTS.. not a fun time.
When they yell your name like that and you don’t know if you’re gonna get a beating or if they just want to ask about school for once (which could also turn into a beating) 😖
@@sojabursche it sucks that it was common to beat your children in the 90s . That’s probably why it’s so hard to get diagnosis autism because of the severe trauma.
I love Kim so much! I had no idea she was also nerodivergent, and I find it so interesting how I end up drifting to the content creators that do happen to be on the spectrum wether they create content around art, covering drama, or creating skits and it makes the thing where nerodivergent people happen to gravitate towards each other seem that much more funny. Also her cigarette mom content has always brought me so much joy even when it brings up more negative memories from my childhood, and has led me to so many hours of doom scrolling 😭 her content has helped me to know that at least I'm not the only one who has had to deal with the chaos that is a cigarette mom and has helped me to know that in the future life can become more normal and something I can look back on and try to make jokes about rather than dwell on.
Thank you Orion and Kimmi, this was an awesome video and very enlightening. ❤
Thanks Orin and super thanks to Kimmi Rhoades! I had a traumatic childhood too which makes it super hard to get diagnosis. First time they gave me bipolar and it sent me into deep depression because I know I am autism. Second time they gave me autism and ptsd. It sucks trying to get a diagnosis. I already can’t explain my emotions, now I have to too another person geeze. Many blessing to you both and kimmi, you are like a long lost sister, you a just like me, it’s so cool to see someone on the spectrum that has similar stories.
I have researched and I almost certain I have pots too. Waiting my cardiologist appointment.
From a person who excised in the gym, rode the bicycle for long distances to now at age 23 not being able to stand more than 3 minutes, run, cycle, exercise, almost fainting if going up 4 floor steps and have electricity in the legs every time I shower and see black vision spots if moving too fast.
I can’t mask any more.
Nearly 40 late diagnose and had a meltdown at the shop last night.
I don’t know how I’ve lived this long.
Orion, once again, thank you mate. Another great episode 👏 and Kimmi, your story and insights really resonated. Both brilliant. It's been a hard road for me, and just knowing that others have had a similar journey, is both sad but also comforting. Kudos guys. ❤
OMF! I totally relate to "customer is always right" bs! I'm 52, I have Multiple sclerosis, on carnivore to heal myself, however, I have ADHD/autism. I was diagnosed with ADHD in my 30's. There's no doubt I have autism, My Mom and brother both have ADHD and Autism. I have MANY signs.
One of my worst symptom is RSD. Rejection Sensitivity Disphoria. I struggle a lot with that one. Love this interview! Thank you!
This is so cool I watch both channels!
oh i’m so excited to watch this, i loveeee both of yall and i love hearing two autistics converse.
Thanks so much to both of you! I related to everything you discussed..... and like Kim I used your videos to help me see my own autistic self. So I can't say thank you enough!
Yay so exciting
Orion, i am one of the few that missed Kimmi, she is a treasure.
I'm so glad you both talked about your POTS.
Both my son & i have this, but we didn't quite fit the Cleveland Clinic team of doctor's
limited view of POTS, so they were befuddled & left it at that.
But listening to what Kimmi goes thru is exactly what happens to us.
Maybe, by now they have leveled up their education around this condition.
Certainly, the more autistic people talk about their experiences we will start putting
together the bigger picture of what that encompasses.
I love Kimmi's candor about her past family dynamics,
these family secrets are where the abuse hides in plain site.
We can find a lot of good information online now, like your show.
Thank you for another great video!
hUgz from Ohio, Lee
I'm not on tiktok so i had never seen her content but i enjoyed this convo so much! I'll definitely check her out in the future.
Waaaait... Cigarette mum??? She is so funny!!!
Sorry, I did not know Kim, but I love her attitude. Weird timing as I had just fired up some "Cigarettes After Sex" to listen to a couple of songs of theirs I like. Anyway, I too use thoughts of my parents as how I did not want to parent. I've also taken that breaking that chain idea to other aspects. Great episode. Thanks.
thank you for sharing your experiences 🙂❤
Nice Collab Orion, many interesting topics throughout.
POTS sound similar in a way to what I had with androgen deficiency due to Klinefelter Syndrome. I never had the energy or the muscle strength to compete in any school sports etc. Mind you I only started passing out when I was 45yo, and Klinefelter Syndrome was diagnosed 6 months later. My heart rate however was different. My max heart rate was reduced, and my resting was elevated.
I think I may have POTS. Whenever I eat I can get so lethargic and you describing the Thanksgiving meal clicked.
I often will “immediately” fall asleep after eating like almost black out and I have only recently this year started fasting consistently and eating smaller meals (most of the time) and it’s helped a lot.
I am 33 and get odd looks all the time at work. I get told I’m terrifying to deal with because they just “want me to be normal” and I get so mad because I’m like if y’all are normal I don’t want any part of it! You guys are miserable!
I’ve gone through 8 interviews for management at my current job and they’ve all but said I am weird and therefore won’t get into management.
I got reprimanded for being difficult because the team I work with wasn’t fed when all other shifts were. I spoke either upper management that if they are going to feed everyone that means everyone and I cried while explaining this because “my team” as I saw it was really crestfallen that they were forgotten.
They met me with blank faces and blocking me from promotion because that is frightening….
It’s consistently maddening.
I have a problem with my digestive system too, and after looking at all the symptoms, I think I have POTS. I did a test kind of like the tilt table test, but it was just laying down for ten minutes and standing up for up to ten minutes (I never make it past two or three before I don't feel well). You use a pulse oximeter that goes on your finger to measure your heart rate. My heart rate went from 88 bpm to 154 bpm, and it would go up and down between 130 and 150.
The problem that I have with my digestive system is that if I go for a walk or to exercise after eating or drinking anything, I get diarrhea. I think it's because the blood diverts from my stomach to my brain, and the rest of the blood pools in my legs, which turn red and stiffen up from the blood pooling.
I've had these symptoms since I was eight, and I was taught that it's normal for lightheadedness and fainting to happen to teenagers. The problem I have is I have so many more symptoms and it's so much more complex than just fainting. I don't know anyone in my school of 450 kids who has ever fainted, or felt lightheaded, or had exercise intolerance or heat intolerance like I do, because the whole school would have heard about it if it happened.
I went to a cardiologist, and they said that it's just because I'm a teenager, and I need to drink more water, get more exercise, eat more salt, and cut down on the caffeine. I've been drinking more water, getting more exercise, eating more salt, and cutting back on the caffeine for four years. My body has never been able to tolerate more than 100 mg of caffeine every day. Everything they told me to do, I've already been doing for years. I've told them that it's really hard to exercise, and I've been drinking more water, eating more salt, and not drinking anything with caffeine for four years, and they said that I must not be doing it well enough if I'm still having symptoms.
I hate it when people tell me to "just put up with it" because that's what I've been doing for seven years, and every day that I "just put up with it", it seems to get worse and becomes harder to put up with.
Good insights! This makes so much sense. Yes, could I get a new brain and a new heart as well (high blood pressure).
I am an old woman with serious mental problems but no official asperges diagnosis. Though I have done years research and I am pretty sure that I have aspergers. I have almost all traits. Now I understand my life really good and my struggles.
Thank you both for this great video.
Fun fact: The original quote was actually longer and was "The customer is always right in matters of style and fashion." Basically, it's just meant like if they want to buy it, let them and don't correct them even if you think it looks bad.
Fabulous, spot on, thank you!!!!
Great video & thanks for finding me another autistic creator to follow!
I'm still watching this video, and relating heavily with both of you, but at 35:45 the saying 'the customer is always right' pops up, and I think it's very interesting that That is not the full saying! It's : the customer is always right in matters of taste! Which is obviously something that is omitted to minimize the troubles that people that work catering to people face (rude customers, and all of that) so I just wanted to point it out! But I'm really liking this video, thank you both for sharing with us!
Finished the video, and wow do I have similarities to you both, even concerning pots because of the tachycardia that I have when I do whatever, almost fainting in some cases, can for sure say this was a great video!
I have autism and pots i have autism for 20 years as well
This was great! And helps show autism has no “look”. POTS too. Thank you for helping get this message out there ❤
I literally just posted that I think I have POTS.
I have POTS. I didn't get it until I was 36 but it wasn't diagnosed until age 47. I used to run track and cross country. I was fast in junior high but I got slower and slower during highschool while everyone else got faster. Stairs are SO hard to climb. I figured out that I had POTS when I was reading the comment section of an autism video! Then I talked to the doctors and got diagnosed.
@@Catlily5 I’m getting a 14 day heart monitor now. I can barely leave the bed anymore. 😞
@@Princess__Buttercup I spend a lot of time in bed but I can still do some things.
I hope you improve!
Just wanted to say how much I appreciate you guys making content. I’ve struggled so much with the shame of being queer and neurodivergent that it’s really comforting and validating in a way that I don’t know how to describe the feeling I get when I see someone like Kimmi being openly queer and neurodivergent. It gives me hope that one day I’ll have the confidence to openly be myself.
Thank you Kimmi! I knew there was something about your comedy that I resonated with!! You’re super funny and I’m amazing with how hard you work!
I think I have POTS too, I didn't know beta blockers were a thing so I'm going to try to go for a tilt tabel test/dx bc of this video thank you ❤
I relate to so much of what you talked about. Thank you.❤
I wanna say to people, "Well, you don't look smart."
@@QuiltedMadness I need to start saying this.
This is really good thank you Orion and Kimmi
the episode I needed !! so excited to watch !!
Thank you so much for talking about POTS. It took me two years to get a diagnosis and I STILL have doctors that know nothing about it, let alone people on the street. I really wish more people understood how hard it is to live with.
Go Kimmi!!❤ you and your work!
I have pots. I keep them in the cupboard next to the sink.
Those are the better kind to have!
The part on social constructs, some reason I have a deep hatred of money. I often dream of a world that leaves money behind and accepts that every human has a right to access resources. The biggest issue to overcome is the psychological damage to our species that urges people to horde things created by the fear of deprivation. a governmentless world where people work to benefit the entire planet with the main goal solve scarcity problems and to automate most industries to free people to live without the need to do repetative tasks to earn points. Giving people a higher level Education is one of the most important things to create a richer world with more free time for people to follow their interests and creating an environment for people to flourish doing what they love. Jacque Fresco is probably one of the most famous advocates to transition to this sort of world. I'd recommend the video "Jacque fresco A story of change"
Gaaah! It makes so much sense, I relate to you soooo much, Kimmy. Nowonder were both Autistic lol
This is so healing to hear. My family believes that I’m “faking” it. That I’m looking for excuses for my laziness. It hurts so bad. I hope to one day be able to have an official diagnosis by a doctor so they will finally understand that I am just trying to find out why I am the way I am. 💔❤️🩹
I want to say just because you had shot parents and are autistic doesn’t mean you will be a bad parent my kids trust me come to me with everything and want to spend time with me. Just because you get overwhelmed easy doesn’t mean you can’t learn to take time to self regulate and hold to it’s ok to take time to myself to breath so I can be good for my kids.
I can’t wait to see the cardiologist for the tilt table test this is my life I really think I have pots
It’s a long running joke that I’m the little old lady of the family from how I act to how much my body hates me. I’m so tired of being so sick and tired physically and mentally
My heart has been jumping from 65 beats when I’m sitting to 160-180 when I stand up I have been monertoring it on my own to advocate for getting the tilt table test. I did the same for getting the adhd autism diagnosis I was so right. I have been fucked lately I can’t do anything I feel so shit all the time I keep falling and fainting
I can’t even go shopping for food or supplies for my animals and my dog has been alerting me to my heart rate making me sit all the time. My life sucks I can’t do my basic everyday life things. I got compression socks and have snacks to have throughout the day or my worse days breakfast shakes
❤❤❤
Cig mom survivors in canada 🙋🏾♀️
👏🏼👏🏼👏🏼👏🏼👏🏼👏🏼
I don't know who Kimberly is. It's not stupid to tell me.
I’m noone special 😂😂😂 just Kimmi
I have autism and POTS too.
😊👍🏻
I've never, on the internet, hurd of someone saying a self diagnosis is acceptable and it feels so genuinely releiving.
❤
Am I the only one that always thinks an hour is too short for these talks? I just start getting used to the rhythm of the conversation and then it ends... 😢
👷🏽♂️
Went to her channel before watching this interview. I don't get it sorry. And one of my 'autistic things' is that i don't like swearing so couldn't find it funny even if i wanted to 😬
my comedy isn’t for everyone 😂
I had a look too. It wasn't my thing, but each to their own.
I have a dry sense of humour: so dry that it isn't funny.
Christ Jesus is King of Kings and Lord of Lords.