My diagnosis saved my life too. I was teetering on and edge of a very dark cliff. It really says something that we all used the same words to describe ourselves: “broken, alien, worthless, etc” until we find out about our diagnosis. The way I was able to forgive myself for my perceived “wrongness” was life changing. I’ve literally never felt happiness until I got diagnosed at 34 and can honestly say I love myself now. I’m 39 now and it took a little while to work through it and settle in but that information was INVALUABLE. I’m getting married next year, have a house and cats and love my life for the first time EVER 🖤💕 Thanks for sharing your story. It was very similar to my own and really helps knowing there are more people like us out there.
That’s a good point that we all felt the same way. It’s fascinating, but also sad. I believe that finding out I’m Autistic at 29 saved, or at the very least, completely changed my life for the better. It’s been about a year now since the first suspicions were raised. It’s been a very rocky year, with a lot of grief and meltdowns, but I’m starting to love myself and am slowly becoming more patient, empathetic, and accepting of myself. It is so invaluable 💜 I feel like I’m becoming more *me* every day and really don’t care what strangers think anymore. I’ve started stimming and using fidgets in public, as well as headphones, and it’s so freeing 💜
8:57 You guys are so right. Since ASD is a spectrum, the more voices/YT channels showing different spots on the spectrum is really so valuable in helping people people see ASD in themselves.
When I wanted to unalive myself in my teens, the only way I was able to convince myself that I was worthy of living was by accepting that I must have some undiagnosed problem with my brain that causes me to be this way. And that it was not my fault the doctors missed it. Even after accepting this, not knowing the actual "why" caused me many more years of suffering. I used to push myself into burnout to accomodate the relationship needs of non-disabled people who would make me feel deeply ashamed for not reading their non-verbal cues and for needing help with things they would say were "so simple that a child could do it." Some days I would wallow in self-misery and ask myself "Maybe I am just a bad person and I don't realize it?" Needless to say, realizing and accepting I am autistic caused my mental health to SKYROCKET. I no longer hold these thoughts of self loathing. ❤
That's fantastic, and my experience from teens onward is much the same, although I think I pushed forward from pure bloody-mindedness. All of my breakups came from a belief that I must not care, even though I'm sure I did. In love and life, there's a lot of doubt and confusion when you think one thing, but people repeatedly tell you it means something different. I only sought help after failing at marriage too, and being told I needed to deal with whatever demons I was battling. It was hard to ignore that she was right, so I did. I chased symptoms and started counting until I figured I had depression, was narcissistic, had some dissociative disorder, anxiety, quiet BPD, mild OCD, some type of bi-polar that just went neutral and down, and was just plain arrogant, and a few unnamed extras floating around as well. Turns out I'm AuDHD and having named them, I am getting a little better. The thing that will always keep me going, is that I now know how to help my daughter understand herself in a way I never did. A lot of that understanding is thanks to Orion, NeurodiverJENNt, Yo Samdy Sam, Mom on the Spectrum, and others sharing their stories and realizing it's not just me.
Thank you for persevering. As autistic people, we usually like to know why things are the way they are, and yet we can live for years not knowing why we are the way we are. Again, this is why it's now my life mission to advocate for autistic people - if I can help one person's mental health to skyrocket, everything has been worth it.
Psychedelics definitely have potential to deal with mental health symptoms like anxiety and depression, I would like to try them again but it's just so hard to source out here
I’ve been researching on psychedelics and it’s benefits to individuals dealing with Anxiety, Depression, ADHD and from my findings, they really work and I’ve been eager to get some for a while but its been difficult to get my hands on them.
The Trips I've been having really helped me a lot. I’m now able to meditate and I finally feel in control of my emotions and my future and things that used to be mundane to me now seem incredible and full of nuance on top of that I'm way less driven by my ego and I have alot more empathy as well
@@AlbertoTorres894 I feel the same way too. I put too much on my plate and it definitely affects my stress and anxiety levels. I am also glad to be a part of this community.
I am an AuDHDer also and i will be 69 next week. The thing about aging is that one's responsibilities decrease greatly with age. I was the mother of six and life was extremely stressful. Now i have no children, no pets, no job. It gets better. Thanks for a great discussion. 💜
My shrink thought it was funny that I thought I was autistic. I am 59 and was high masking until I had a breakdown in my 30s. Suicide attempts, learning disability, ADHD, anxiety and Ehlers Danlos syndrome and major depressive disorder are all comorbid with ASD, and I have all of these. Many misdiagnoses as well. Crushingly low self esteem. I am doing better now finally, meds have helped.
@@NightMystique13 I'm so sorry that you went through such torment. I'm part of this community precisely because I want to help to stop people having to go through years of pain and doubt like you and I have done.
It took me 58 years ! to met a woman ( health care ) who knew a specialist who diagnoses in autism . After yearscand years of MISdiagnoses and health care keepers who just didn't listen to me when i said " i think ive have autism " ! Finaly ive got the right person who knew everything about autism and took me seriously ! Know ive almost 60 and ive learn every day something new about me that i thought that everyone has this problems ! And you Orion has a great part of it because you pick every aspect that comes with autism and furely talk about it . Thank you so much for all the afford you make to help autistic people been seen and heard , atleast every day a little better and better . Thank you .
Interesting conversation. I'm 53 and self diagnosed after questionnaires, many videos, much reading and the opinions of two professionals. Getting diagnosed seems to be quite hard for many reasons. I feel like I'm happy to go without a proper diagnosis because if I tried to get one and was told I wasn't, I don't know what I'd do. Somehow I've lasted in my job for many years. Perhaps my employer knows there's something different about me and is making some accommodations.
I'm also finding it extremely hard to get an official diagnosis, but like you I don't feel like I have to have it, I know who I am now but it's not that easy to explain to the rest of the world that you just need some accommodations and a little bit of understanding, especially when you don't have that diagnosis from a "professional."
Getting a formal diagnosis will help to convince employers to make reasonable adjustments, but in terms of self-validation, I don't think it's necessary. I knew I was autistic 18 months before my diagnosis (and my diagnostic report just made me feel worse).
I cant dral with it right noe, but I will have to watch this once I am more stable. Realising I was autistic helped me so tremendesly with my selfworth and everything, I still struggle, but knowing made it a lot easyer to treat myself with kindness when I grew up thinking I was a monster
great conversation! likewise, I was born in '82, and it feels like it was a dark age for autism awareness, and it persists now in our age group and many older people
Diagnosed at 62 years old, almost 64 now. The grief and anger over the lost years is real. Partly angry at myself too for not recognising it. Thank you both for sharing and for your insights. Cheers 👍
The grief and anger over lost years is very real. I'm also angry at myself for not realising sooner, but it's all benefit of hindsight stuff - I thought autism was Rain Man. Everyone else seemed to think the same too.
I have a friend who went to her doctor to enquire about an assessment for autism.....the doctor just couldn't understand why after all these years she would want to know......GP in Scotland.....I mean...what on earth???
@@sarahmottram3369 That is not good at all. We all want to know who we are. If an assessment makes you certain you're autistic, the relief and self-acceptance from that is crucial for your well-being, which I thought GPs were in the business of helping with.
This is such a beautiful conversation and what an inspiring guest! @autisticnotalien Thank you so much for talking about your individual Autistic experience, we are all different.
I've recently been learning more and more about my flavor of autism, with a pretty high chance of PDA. Despite learning to accept a lot about myself I still often times feel like I'm letting people down. I was one of those "gifted kids" growing up but now it's hard to get/keep a job, I'm very withdrawn socially, and every expectation has always felt like agony to me. Even though I'm learning why, I still feel lost on what to actually do about a lot of it. Despite all that, seeing people who've found success gives me some hope that it'll be okay.
You both made me want to quote a part of a poem by Kristy Forbes "(...) because we see ourselves as broken versions of neurotypicals, and all the while, we are perfectly complete and whole versions of our beautiful, magical, inspiring, resilient, strong autistic selves" I love both your channels, it's great to hear both of you in the same video. I hope therapists and employers will watch this video, it would be very helpful to so many people ! I feel anger too, for the reasons Neil explained (born in 1981), and also because if I had known much earlier, I wouldn't have made so many choices that were very damaging to myself, because I was trying to improve at "being normal". Such a wise conversation, thank you Neil, thank you Orion !
@@AutisticNotAlien I first discovered this poem through the interpretation of a group of wonderful autistic women from Iceland. It was the first time I really felt I was like them, and then, I started to get informed. This poem probably saved my life, at the time, and I still watch their beautiful interpretation every time I feel I don't have a place in this world, it helps me. Kristy Forbes is wonderful for choosing the most accurate words to describe feelings. You have this talent too.
My self-realizing at 42 was a HUGE relief because now everything makes sense! And now I can be an even BETTER advocate for my autistic teenager! My life purpose is to give HIM every support I didn’t have, so that hopefully he won’t suffer how I did. His life won’t ever be easy, but he’s got a good foundation, self confidence, and supports to give him a head start. Oh the places he will go!
Thank you as a former autistic teenager who had a diagnosis. I remember telling my teachers that I had to leave cause I'm having an anxiety attack. Or that everything is too loud. My major had a LOUD consistent atmosphere. Lots of yelling and loud music. Really tough. I have had ADHD forever as well. The people-pleasing is real. find teachers / administrators/vice principals that can go to bat for you. I did and it saved me and helped me get through 2.5 years of high school-i graduated early after that and moved my schedule to community college! It helped me so much more and had some lovely teachers that understood me. Good luck to you and your family!
Thank you Neil for bringing up the kindness we give and the people pleasing we do and the cruelty of people including family members and also the way our kindness is trampled upon. ❤ Love to both of you ❤❤❤
Thank you. I never realised that people pleasing was a trauma response until I did a deep-dive into autism. I just want everyone to be kind to each other.
That's because despite not being someone you know, a lot of autistics have the feels & connection with them and sense of one another's vibes. It's a gift of ❤️×2
Thank you to both of you. A diagnosis is really difficult and/or expensive in many countries including mine. I have done several tests online and have very little going on outside the neuro-divergent spectrum. I am very anxious out in the world but managed to mask enough to work occasionally. It has been a huge relief to find out why I have never managed to 'fit' in, have always lurked on the fringes and have often not been able to leave my home. I can't believe I spent so many years in a state of exhaustion, and struggled so very hard to do what other seemingly average minded people managed to do so easily. Born in 67', I was labelled as difficult and an under achiever, was sent to a school psychologist 2 weeks into my schooling and despite finishing my tasks way before anyone else, was often confined to the store room and separated from my class. It has been a long and arduous journey for many of us gen x's. Both my son and my partner are also on the spectrum - and my son suffers with the anxiety I have. (Both adhd and autistic).
Thank you for sharing this. Work is the hardest thing in my life. So many unwritten rules, so many egos, so much bullying...My son is autistic and I worry about how he'll cope, but at least I now know we're both autistic.
I can't thank you both enough for everything you do for the autistic community! Orion, I also have you and a few other TH-cam content creators to thank for my own autistic "ahhha moment." I'm 43 now and am self diagnosed Autistic and ADHD.... it's been about 2 1/2 years since I first began my journey into self discovery. And I can say that this discovery has most definitely saved my life. I was misdiagnosed as bipolar at 25, and have been on every medication imaginable, lithium, depakote, just to name two..... since the meds never seemed to "work" I just assumed that I was broken or just plainly defective. But the truth was that I am not defective but autistic and that's why medication never worked for me. It's wonderful to have that little bit of peace of mind..... knowing that you are NOT crazy and that you just don't NEED the stupid pills that the medical community thinks you are so screwed up without. I've learned that echollia and all of the other "weird" or "odd" things I did/do are totally normal and just fine for a non broken, average autistic person 😁😊! So you both have made such a huge difference in my life and how I feel about myself...... I'll probably never be able to express my gratitude 💙🤓! Now I have the exceptionally difficult task of getting reassessed..... and hopefully getting my "official diagnosis."
It means the world to me to know I'm helping to make a positive difference for fellow autistic people. "I am not defective but autistic" - yes. This is the message I will be repeating every day for the rest of my life.
I'm 24 disabled. Age 4, diagnosed with epilepsy and have had many many other health problems over the years for being 24. I've been different in so many ways and the only person who clicked was my autistic cousin. We share MANY traits and problems we go through one another (always support each other). When I realized it n did more research we now think I may be on the autism spectrum and are going to see a neuropsychologist to figure it out. But just having support is enough for now ❤
Good luck with your appointment with the neuropsychologist. It's great to meet people who understand, isn't it? It's very rare, in my experience, which is one reason why I wanted to do the interview with Orion.
Thanks Orion. Your channel has been a great support to me. You have encouraged me to make content. It is incredible that the crisis worker considered autism services for Neil. I have been in crisis for 2 months and am still waiting for an initial evaluation. I am 52.
Good luck with your evaluation. It is indeed incredible that a woman I had never met, and still haven't met, suggested within two minutes of starting a conversation that I might be autistic, when everyone else I had spoken with in the preceding 39 years hadn't mentioned autism to me once. And this is why we need to talk about our autism experiences: at home, at work, through TH-cam, etc. Autism isn't Rain Man and counting cards and an Oscar-winning shuffly walk - it's real people.
I’m only 10 minutes into this so far, and I think Neil is great, I’ll have to give him a follow, but I am cracking up at how different Australians are from the English, and since I’m also ADHD/autistic, I’m having a wonderful time imagining how a conversation with you two, my therapist and myself, would go. My therapist has ADHD, so our sessions are mostly therapeutic through goofy laughter. But Neil just said “knowledge is safety” and that hit me like a bag of bricks. Obvious but VERY PROFOUND. I’m getting ready to go back to college with a focus on psychological anthropology. I’m also loving the discussion about the anger about all the time we’ve lost. I’m still not formally assessed, and I was even DENIED ASSESSMENT two years ago when my ADHD diagnosis was RE-confirmed. My son was diagnosed at six, I knew he was autistic at four. I fought for two years to get him assessed and I was like “wait, am I autistic too? Because all of this is TOO FAMILIAR?!?” Same for my husband. We have the same therapist, which is a unique situation. But we started with couples therapy, and our therapist has an interesting method where we both have and individual session, then a session together. He said it could help explain so many of the struggles we’ve had in our relationship. That’s when I started looking for autism resources on YT. And that’s about when I found you, Orion. You have several videos that have helped us. This is so full of gems! “I’m more upset about aging than death.” YES! Oh my goodness.😮 Great video Orion! Thank you from a yank in the US!
Thank you very much for your comments. Oh yes, I'm furious about the decades I lost to...feeling lost. The self-doubt and pain is baked in now. The template is set. Having assumed I'm a broken version of a human being, I'll spend my remaining years feeling inadequate...and yet I strive, and I must, because I now know about autism and I want to share my knowledge and experiences to help other autistic people and increase acceptance of our differences. Knowledge is safety, though when you share knowledge, neurotypical people seem to think you're just showing off how intelligent you are. Nope. As well as safety, knowledge is joy and KINDNESS. "See, look at this knowledge I have, I'm SHARING it with YOU."
Interesting using the Shawshank Redemption....a late diagnosis being like an escape , an awakening, the start of freedom. But as you point out Neil the grief and anger too....all those years struggling, self hating and full of anxiety. Having masked our real identity for decades as literally a survival strategy....parallels with institutionalisation. This theme was starkly represented in the film by the taking of Brook's own life as an older man who couldn't cope outside the prison walls. Interesting how the films which have resonated so deeply throughout one's life can also be given more meaning through a new lens after diagnosis. Thankyou both for such a thought provoking discussion.
Thank you very much, Jeanette. I'm still a bit hesitant about the Shawshank analogy, as it implies that the path to autism realisation is entirely...foul! Your reference to Brooks is far more apt and powerful. His release into the 'real world' is like an undiagnosed autistic person from birth, struggling without knowing why and assuming it's all their fault. And there is a very depressing conversation to be had about autism and early departures...which comes back to coping in such a cruel & inconsistent world and the internalisation of blame. Autism realisation/diagnosis is a crucial step towards accommodations and self-forgiveness...and joy. I'm not going to pretend that I do TH-cam videos solely out of altruism - they're my creative refuge. Autism can, and often has been, an engine for good in the world.
@AutisticNotAlien Precisely. I actually ruminated and worried after I wrote it. The comparison with Brooks was a little dark and upsetting but then that's often the reality of living as an autistic sadly....both in terms of thoughts and experiences.
@@JeanetteInANutshell As my friend Paul (Adult with Autism) says: 'We need to show the dark side of autism too.' Just showing the shiny and fluffy stuff isn't very helpful.
I was 39 when I was diagnosed with ADHD ... and didn't find out I'm autistic till I was 58 because, until recently it was believed that if you have ADHD, you couldn't be autistic and vice versa!
I am still exploring diagnosis but I'm pretty sure that these videos have helped me tremendously thank you. I'm 41 just realizing this. I've always felt like something was "off" or just not normal lol my whole life. Explore various possibilities and this is the first one that hits all of the notes!!!
Thank you. Likewise, TH-cam videos about people's autistic experiences have helped me a lot - in fact, they've been life-changing! I'm so pleased this one resonates so much with you.
The GRIEF! Yes, this has been a really hard part of late diagnosis. As relieved as I am having a diagnosis now, the grief has been the most devastating part :-(
While my diagnosis also came during lockdown, I don't think I would have pushed for one if I didn't experience how amazing I felt during this period of isolation. I did feel bad for everyone and some guilt at my own contentment, but I finally understood that I'd programmed myself to "suck it up" and that I was functioning at a depleted level. Once I started experiencing general wellness, it gave me the agency and clarity to pursue my diagnosis... only took me 40 years... It's been deeply validating to identify my experiences with the community and its creators, and I wish you all nothing but the best. You all deserve it, and don't convince yourself otherwise.
Thank you very much, Ophmar. I share your thoughts about lockdown, though it's strange that my brain sent me into a whirlpool or rumination during that time, which ultimately led to my autism realisation & diagnosis. The circumstances of one's autism discovery can be negative, but the knowledge is absolutely positive.
I'm a 44 female and experiencing my burnout from masking and emotional abuse from partners saying I'm different . Your videos really resonate with me, and I feel like someone thinks exactly how I think and feel! I had no clue I could be neurodivergent until my neurotypical partner suggested it.
Thank you so much! If I can't be a massively popular autism advocate like Orion, I can at least be an amateur comedian with a tiny but devoted audience!
I got the crisis line misdiagnosis, personally - they told me to look into BPD. That's to be expected though, as an AFAB person, especially given the fact this was in the 2000s, when I was in my mid-20s, that happened. It wasn't until my mid-to-late 30s I realised I was actually AuDHD, a revelation that's improved my life immensely.
Im very glad ai was diagnoaed my my primary care dr. After her two girls(daughters) were diagnosd. I'm so thankful. My family is thankful. Ny life was so different and I did have more accomodations growing up-not that i used most of them.
hey mate have you ever thought about or have a video on the beneficial emotional release type benefits from getting worked up emotionally, best on your own, have a little cry watching something or thinking about something, feel better afterwards type scenario? I am a bit emotional especially over nice things, people trying to help, stuff like that or a thought trail will go on in my head that makes me happy and I cry. I feel like its healthy in some scenarios, like a stress release valve opens a little. Got to be on your own, I am building to the point I could cry and film it, I actually have cried a bit but its fast to notice on two of my Cairns Lobster youtubes already haha. Andre
I am also audhd, and I also think that the adhd is a bigger problem for me. I only have the official diagnosis for adhd, and the autism diagnosis wait time I was told was 2 years, insurance doesn't cover it, so it would be around $500 out of pocket. My manager and the HR team have been pretty good, but it is scary to bring up a need because I don't want to be put in an audhd box where it's assumed that I can't do something because I'll get overwhelmed. I have a coworker in the same situation which helps, even though I'm 20 years older than them, but we do support each other. I'm getting a new manager soon, so I hope they are just as understanding as my current manager. Wish me luck.
The waiting list reduces quicker the sooner you join it. You have to wait for urgent operations in the UK due to shortages that's life. You deserve more support, patience is a virtue 🙏
Good luck, Sarah. I didn't want to bring up a need either, but unless we do, it will be assumed we're just not trying hard enough. It's like telling someone who needs a wheelchair to walk up the stairs and condemning their attitude when they don't do it.
How lucky am I to be able to watch you two have a conversation and sharing all of these very valuable insights and thoughts around the topic of autism/adhd. Thanks guys ❤
Kudos to both of you, for your bold and brave voices talking openly about the largely unexplored territory of autism. I have been watching your videos, Orion, since the first ones I saw that described the shame and indignities autistics live with and was "gobsmacked" to have the experience of being seen plainly, and not like a zoo exhibit. I am 66, and will probably never have a diagnosis, even though I actually know what causes it within my extended family. When people tell me I don't seem autistic, I tell them it's a big umbrella! There are now more than 50 genomes identified as responsible for autism symptoms. In my family, it is associated with lesions in the temporal lobe which sometimes cause seizures, selective mutism and more frequently autistic symptoms, delayed visual or auditory or emotional processing, and uniquely individual patterns of cognitive holes and unique combosof the above. I have one daughter who had epileptic seizures (outgrew the seizures, but not the other stuff), which is the link that led me to the autism aspect, and another who is diagnosed schizophrenic and bipolar. I know the bipolar part of the diagnosis is her unrecognized autism, but since there is no prescription for that, and her schizophrenia is drug resistant, the psychiatrist's not particularly interested in addressing that. I do tell my children about what I have learned, because knowing the seizure onset age is like a heads up and can be reassuring (wish I had known when my daughter was taken by ambulance one night in the middle of a grand mal--I thought she was dying). And because the shame they feel is not going anywhere. My advice in dating on the spectrum would be, look for someone with a kind heart and a cast iron stomach (autism and celiac don't mix well). You, Orion, need to think of yourself as the maverick that you are, it is your higher calling to do what you are doing (and however long it took you to get to it is no longer relevant to being successful at it). Your son and many others will be braver because of your work, and they really need to be! Now I am going to get a subscription to Autistic, not Alien!
'I'm upset more about ageing than death'. Oh yes indeed! And also the post-diagnosis grief and anger is deep with me. I was formally diagnosed at 56 last year. How different my life might have turned out if I'd known I wasn't defective after all. Also, my diagnosis has wrecked my relationship with my remaining family (mother and sister) who see it as confirmation of my defectiveness. I used to agree with their opinion of me as being a horrible person (they had plenty of examples!), but now I don't and they don't like me standing up for myself. They refuse to make any adjustments for my benefit or try to understand how I experience the world. While Orion and Neil were taking about asking for accommodations from employers I was wondering how I can get those from my own family. 🤔 Great chat, thanks so much Orion and Neil. Please be collaborating again. ❤
I'm sorry you've had to experience this. The 'defective' narrative is so incredibly damaging and just plain wrong - but you already knew that. Your point about asking for reasonable adjustments from your family is excellent. As we're in the minority, we're often dismissed as the uncooperative oddballs who should just try harder to fit in. But accommodating is a two-way street, and neurotypical family members (& colleagues, etc.) shouldn't have everything their own way. We're all human, we all deserve respect and thought and love.
@@AutisticNotAlien Absolutely! Thanks Neil. That's pretty much what I've told my mother and sister - all my life, according to them, I've failed at being 'normal' and now it's their turn to learn some neurodivergent skills... or not 😄
@@ishbelharris1857 'Failed at being normal' - that's a review of my whole life. Oh, hang on, no it's not - it's: 'Finally realised it's OK to be his true autistic self in a world that should try harder to respect & appreciate diversity.'
After I found out I was Autistic, thanks to a good friend who is also autistic, suggested that I do some research found a site took some online tests, I fit Autism to a T. Yes we do deserve respect. and who better to advocate for autistic people than we autistic people who live it everyday. we are not broken, our brains are hardwired differently.
I realized I was autistic at age 67! I am angry about wasting my life thinking I was a freak and a bad person. It is a relief and I have given myself some grace for the mistakes and bad decisions I have made. I am sick of telling people I'm that I have autism and them saying that they don't believe me or that I don't seem autistic or everyone is saying they're autistic these days. 😢
Let a 52 year old woman (diagnosed adhd and DEFINITELY autistic, but undiagnosed with the latter) with CPTSD and an extremely difficult past who is just starting to heal from trauma and living a good life, that getting older isn't such a big thing
42 is a great number, it's been my favourite number ever since I saw the Hitchhikers Guide TV series back in the early 80's. And coincidentally, I was 42 when I self-discovered by accident. This was 15 years ago when I heard Aspergers mentioned on the TV and wanted to know what it was, so looked it up and first came across online tests. I filled in the multiple choice questions innocently and honestly and was surprised to find I scored as very likely Autistic on them, so started researching Aspergers/Autism traits and experiences in more detail and found nearly all of them resonated strongly, as well as ADHD. It made sense of every difficult experience I'd encountered over the many years before, my various hypersensitivities, fussy eating, acute special interests, etc, and gave me insight into self-accommodations I can make to improve life. While I can think back and say it would have been useful to have known back in my school days, things were different back in the 1970's/1980's, there was a lot more stigma around things, even just having divorced parents or being gay. So I've not grieved being unidentified, I was just thankful that I'd understand myself better from then on, having worked it out for myself at last. The difficulties don't go away, but I'm able to avoid some, be prepared for others, and not feel so bad about myself because it's just how I am. Partly because I'm able to self accommodate and get by, and partly because of late self-ID, but probably more because of ADHD procrastination, I've never got round to seeking formal diagnoses. I'm 57 now, is it worth going through the hassle? It could be validating to have confirmation that I was right, but possibly devastating at this stage if they said "No, you don't quite meet the bar, you're wrong about your entire life experience!" Is it possible to spend 15 years researching and listening to others experience, and still be deluded that you are one of them? I'm not hypochondriac about other conditions, I've self-diagnosed Shingles and Acid Reflux when I had them, and had them confirmed, but never anything I haven't had. Sorry, I'm rambling now. Apologies for the lengthy post and oversharing. It was the '42' that set me off. Love your content Orion, and great interview with Neil. Another quirky channel to subscribe and binge-watch, and from a fellow Brit too. Thanks!
Thank you for sharing your experiences, Russ. I think an official diagnosis can be validating, though for me it was actually the opposite. Still, the piece of paper (so to speak) has made conversations at work easier. But an official diagnosis is, in my opinion, not essential in terms of self-acceptance and self-forgiveness for all the years in which I struggled as an undiagnosed autistic.
I'm 30. No one has ever really questioned I might have autism, and despite being in a constant battle with myself for the last 10+ years no one's bothered to test me. No one's noticed except for a select few who I've lost contact with or who's unable to help me. I've always just been "quirky" or "difficult". Or "lazy". I have an ADHD diagnosis though (from 2 years ago). The bizarre part is that I pretty much had to diagnose myself. I had a terrible psychologist who didn't really say much at all and it felt like a test or school exam, hence why it felt like I diagnosed myself. More recently (January) I went back to get an assessment for autism. I sat down. I was asked a single question: "So what makes you think you have autism?" I froze and I could not answer. He didn't ask any further questions. He decided for me that it was a bad time to do a new assessment (is that the right word?). I had just lost my mother a few weeks before that, so I was obviously hurting pretty bad (still am). I then got LOCKED OUT for half a YEAR. Not to mention I was removed from their system, so on top of being locked out I need to get on a waiting list to even talk to someone again. I struggle with words a lot, and I never really manage to say what's *really* on my mind. But I try. Thank you for all your videos. It gives me hope. It makes me feel less lonely, and less insane I guess.
I am truly sorry for your loss ❤. Our experiences are pretty dang close. Very close in age as well, just a difference in the time frame. Diagnosed with ADHD and death of family member happened when I was a kid. The medication they gave never worked properly so I gave up all together. The doctors gaslit me saying “it’s just ADHD, you can’t have more than that, you are just anxious and shy” type of response. Lost virtually all my friends & relationships over the years and I could never understand why. Now, 20 years or so later. I found these vids and comments that are almost, if not my direct experience, to the point of getting goose bumps / chills over and over. I’m going for ASD / AuDHD evaluation currently. Only to find out they don’t even have the clinic set up yet for this specialist, so the wait time is unknown. I wanted to thank you 🙏, and for you to know you are heard. Sending positive thoughts your way in these difficult times ❤.
I'm sorry about the loss of your mother, and I'm sorry you have had such negative assessment experiences. I know it's no consolation, but I also struggle to say what's on my mind (I much prefer writing things down/scripting videos), and my official autism report was appalling. The autism community here has made me feel less lonely and given me hope.
Really enjoying this conversation. Late dx F 58 here. Cannot believe all the difficulties w school and work/jobs that have troubled me so much and likely efffected my positions. You fellas know about discrimination laws in USA ??? Thank you for your advocacy - both of you 💙💙👊👊
Thank you. I don't know about the discrimination laws in the USA, but I'd be fascinated to know about them. I love reading about laws, and I cannot stand discrimination!
Wow, never thought of that before, I have had a few different counsellors and several different CBT professionals and none of them ever suggested autism....how is that possible!
This guy resonates with me, his experiences with being on the spectrum etc…man such a brilliant upload. Love it, thank god for this kind of content. If it weren’t for the likes of this channel etc, I’d never know I’d too was on the spectrum….trouble is I’m doing exactly what he mentioned, re beating yourself up. I’m currently undiagnosed (but on the waiting list) and I’m beating the sh*t out of myself and have been for many many years (I’m 60) and ripping my hair out due to the ignorance of my situation (I’m also living with abusive childhood and relationship trauma). Personally, I’d like the diagnosis in order to open more support doors that are currently closed to me (Cornwall is rubbish for services like this)
Great story, Orions book and TH-cam was an awesome resource for me during my discovery. So many things y'all said just resonate with me especially when you were talking about listening to the TH-cam and then hearing someone speak like you've always wanted to hear people speak and understand
Both of you are doing super important work in raising awareness, thankyou for all that you do. I've learnt so much about autism and about myself through watching your videos. This was a great conversation with some excellent insights. Keep up the good work!
The grief aspect is real. I'm not formally diagnosed yet, but there's no other explanation that explains to me an otherwise consistently baffling experience for the last 40 years of my life. The grief is a response to the unnecessary trauma as a result of a misinformed self identity, based on NT definitions of normality.
'Unnecessary trauma as a result of a misinformed self identity' - wow. You've absolutely nailed it here. For years, I was trying to be someone I'm not without even knowing I was acting. 40 bloody years of confusion, doubt, and trauma. But I can look back or look forward, and these discussions and making daft videos allow me to look forward.
I got my assessment and diagnosis when I was 47. The science part of me says no going back, I have a 6yr old and 400,000,000,000,000:1 odd of being born says I wouldn't want to turn back time even if it were possible. Struggle all my life with employment, still am. Struggles with housing all my life and still it is my top worry (even though I am in stable housing at the moment). Everything ends up being a worry and anxiety but gotta keep on keeping on . Life is a hellova ride.
I have not gotten a diagnosis yet I have accepted it myself and I am already falling apart. At 33 I was diagnosed with ADHD and once medicated for that my brain was quiet enough to hear the autism. I do think autism saves my life as a teenager because it was the voice that said No that's not a good idea! When my ADHD impulsiveness said it was a good idea.
I read in an autism self help book that adjustments at the workplace for autistic people, such as clear responsibilities, making it clear who you have to go to to ask a question or get something done, treating questions as normal and just matter of factly... HELP EVERYONE and increase productivity. because everyone understands the tasks better and has a clearer idea of how to tackle it. because it's... about the task. and I know the anger... I'm still working on an official diagnosis.. but my suspicion is strong. and I look back at the doctors I've been to ... at the therapist I went to once a week for 3 years, saying things like "I feel like an AI trying to figure out how to be a human". and she didn't bring up autism once. she did help me but she is so clueless about autism. and I go to doctors about the fatigue and the muscle pain that comes with it... I don't even have big mental issues any more. I never loathed myself. I was always of the strong opion that the world around me needed to do better... but I had that shitty loss of self from too much masking. and I look at all the people who should have helped me. the doctors and the teachers. and.. they failed me. the deal of a sociaty is that we help eachother out and they didn't do that. they failed me on a fundamental level of being social. for fuck's sake. in primary school I was sitting at my table, head bend forward, face hiding behind my hair, scratching my scalp often to the point where I had blood under my nails because it was too loud. how did that go unnoticed? how?
How did it go unnoticed? Indeed, but sadly awareness of autism was minimal back in the day, and there are still plenty of people today who think autism is Rain Man.
A few months ago, I (63) realized I was autistic, very likely Asperger or something like that. I have yet to be diagnosed but with an AQ score of 42, it’s almost certain I am autistic. I can tick almost all of the properties boxes of Aspergers. I would like to have been diagnosed decades earlier but that wasn’t done then. It would have saved me from many disagreements with my bosses, perhaps understanding of my behavior by colleagues, not loosing several friends etc. I would have chosen a different profession because it would have saved me from being too tired to get out of bed many times and a heavy burnout. But life is as it is, I can’t turn back the time. I simply have to cope with life while being autistic. I’m very happy now that I no longer have to search why I’m different and am difficult sometimes. I now know why I’m out of energy constantly, that I’m in pain more or less 24/7, that I have sleeping and intestine problems. Knowing that makes life a bit easier.
Yes, we can't turn back time, but we can be easier on ourselves with our belated knowledge that we are autistic, different, and have needs in a world that isn't designed for us.
25:10 honestly I find it incredibly hard asking anyone for adjustments. And if there were any adjustments available I wouldn't want to risk the confrontation and/or conversations following from that. I got a health care card for low income for a year at 43yo. But then because I got fired and then solely relied on my own business, I could no longer get the health care card. I applied 3 times online, each time rejected. It might only take a phone call to ask and/or explain my situation but I cannot pick up the phone. I've been trying to work myself up to it for the past 2-3 years, I'm still not able to. I just have to bear the additional costs. And there's no one out there to help us with these things, because we are 'low support needs' right. To me that just means that others can take advantage of us easier.
Have you had an assessment of your support needs? You can't be told you're low without an assessment. Reach out to where diagnosed you or definitely seek out a diagnosis if you haven't been diagnosed yet. You deserve more support
@@tims9434 I am self-identified. The idea of going through a diagnosis itself is very daunting, I feel it's better to avoid that in order to avoid yet another burnout that may last for years. Not to mention the cost of it. I cannot afford it. I did just discover however through Amaze that one can obtain a diagnosis at a cheaper rate through University Psychology Clinics. I may put myself on a waiting list when I feel comfortable with it, however I am quite certain that I am ASD-1, and an official diagnosis is not going to help any more than self-identification.
@@AutisticNotAlien I don't think so. And it would be awfully embarrassing to do so. I wouldn't want to either ask someone, or put someone in that position. I don't pay myself a salary because my profit is too low through my business. This is probably the reason why they keep rejecting my applications. It would be nice if they could tell me though; then I could at least script for the phone call somewhat.
Thank you. You can start an autism channel if you want to. If you have had autistic experiences, you will have plenty to say. The more autistic voices are heard, the better. Happy to help you set one up (my email is on my channel).
For the last month I've started to research autism through the eyes of people like yourself who actually have autism at at 63 y.o. I'm I'm a 100% certain I'm autistic. About 10 years ago I was diagnosed with severe ADHD but now I don't think the ADHD is quite as bad as how the autism has affected me. If I were to talk to one of you for an hour one on one I don't think that you would come to any other conclusion. And hopefully someday I'll have a chance to talk to somebody. I am so alone right now and the things that have happened to me are likely worthy of a book or movie, lol. My ex-wife did some investigation and she found one place that I could get diagnosed at here in Michigan in the States For $1,400 and they said the waiting list is into October or November of next year. And I think it's crucial that I get diagnosed and I'm going to bring this subject up with my psychiatrist because now I realize I have masked everything where he has no idea what I'm like behind the mask. And what's truly terrible about this is that I realized being here alone by myself and a farmhouse that I masked my symptoms even in the house. Well I went out and bought a rocking chair which I haven't had in about 3 or 4 years and it was instant relief because that's how I stim. And boy do I rock and yet I've been teased and mocked for it for decades. So thank you guys for getting this information out to people.
Wishing you all the best for your eventual diagnosis. I have a very vivid picture in my mind of you in your rocking chair! A farmhouse in Michigan sounds idyllic. I have happy memories of being in upstate Pennsylvania. So much countryside! England is basically the size of one US state, isn't it?!
@@AutisticNotAlien Lol, that about sums it up. Unfortunately I'm going to have to move because there's a lot of mold that I'm extremely sensitive to here. I actually have an interview for a place in 6 hours. I'm hoping this move will help me because this place has gotten away from me and the clutter is exhausting. I really appreciate your comment because I was beginning to think I was invisible. I have so many questions and comments for the autism community. I spent most of my life trying to figure out why I was different. And the last 4 or 5 years I've spent alone trying to figure out why everyone abandoned me. Most of the time I just chalked it up to me being an ADHD ENTP with having an above average IQ. What I've garnered over the last 5 weeks has made me realize that we are the normal ones. And I'm being serious. Anyways I should stop here since I'm a little sleep deprived at the moment and I don't want to start burning bridges by over sharing and going too deep into all my theories and the various connections I've been making. Thanks again for your comment. It means a lot to me.
@@jamesgoetz4625 Hi James. I'm really sorry it took so long for me to acknowledge your initial comment - I've tried to respond to comments in instalments, as there have been so many (which is a great thing!) What you said about us being 'the normal ones' is very important - there are lots of us around, though we're still in a minority, so we need to form a community/communities. Never worry about oversharing with fellow autists - we generally love info and helping each other! Theories and various connections = my brain! Thank you for *your* comment. The feeling is mutual.
@@AutisticNotAlien I didn't want to make you feel bad. You're the only one that responded at all. It's just been hard because I've been alienated by so many people the past few years. People tend to avoid me like the plague but it might get better because I found a new place to live where I'll at least I'll have new people to meet. That at least gives me better odds of finding friends, lol. Right now all I need is a fishing buddy. I don't even care if they talk to me at this point, lol. I never really saw my self as intelligent but over the years that's changed. Do other autistics feel that they talk over most people's heads? That's been my experience. Most people I meet lack curiosity about the world around them or they simply can't follow my logic. And most people seem very content to only talk about superficial topics. One of my theories is that a lot of the issues we have are a result of today's society. I don't think it was quite this bad in the past.
100% For the first time in my life (since my late/self diag) i know im not going to try to end it all today, that this life is hard but okay , it's autism, not necessarily depression, AND THIS WILLLLLL PASS.
@@AutisticNotAlienI'm so glad depression isn't part of it for me. For me "overwhelm" is the driving force. Now that I know that it is actually a recipe full of symptoms of autism, I have an entire arsenal of tools to combat and recognize it before it gets to that "end" point, and to be able to wriggle my way out if I get too close to the tipping point. :::THE DIAGNOSIS CHANGES EVERYTHING::: thanks for what you are doing and how you are doing it!
Listening to successfully married, parents, running YT channels, looking at my own life and ONLY wanting it to end. I have nothing but “stuff”. Loads of guitars, loads of art works… not a single active friend.
I have lots of stuff too...and a lot of baggage in my mind from a lifetime of anxiety, depression, and trauma. I know the 'married with kids TH-camr' image can give a very one-sided impression. The fact is that I take each day as it comes, and when life is really stressful, sometimes it's minute by minute. I am wracked by self-doubt and I loathe myself. I can either cave in or reach out & help people whenever I can. It might sound corny, but I increasingly see people within the online autism community as my friends. Most people don't want to know me in real life. It hurts, but I understand. What's your story? For a start, I'm already fascinated by your guitars and art works.
@@ascgazz I am worried though, and I'm interested. Please share if you want to. The main reason I'm here is to help, as twee as that may sound. I know how horrendously isolating and depressing it is to be autistic in this world.
@@AutisticNotAlien you know how “horrendously isolating and depressing it is to be in this world”, to be you, though, and only you. I don’t think you’re the right person to deal with my bullshit, with all due respect, I think I’d seriously depress you if I actually sent the reply I just deleted, in favour of this one, Not to say I don’t appreciate the thought. The one thing I’ve wanted longer than anything, is to not be, and it’s a motherfucker to back out of.
I used to explain my executive function problems, meltdowns, difficulty following arbitrary syntax, et cetera, as due to dyslexia, Anxiety? I thought that it was a deeply ingrained bad habit. I had prayer, several rounds therapy and meditation to deal with that. Indeed I probably was depressed, but worry, anger, anxiety, & possibly depression, all feel the same to me. Now that I realize the cause, this has made things vastly easier. On a humorous note, when I "came out" as ASC, most of my family claimed that they already knew - lol
I am realuzing so much but it is too late. I have bit off more than I can chew. I have too much student loan debt. Can't keep a job. Aging out. Just too late really. I really appreciate what you do though.
I was diagnosed later in life (at35), and can relate to the grief of being late diagnosed. This video points out an important fact - paperwork and disclosure are vitally important! Having a documented disability does open up the avenue for accommodations. Sadly, I live in rural America and got “creatively let go” as a school teacher for being autistic. Such is the sorry state of the American educational system. If I had the documentation then, I might have a legal claim. Hopefully, having the documentation to back me up will treat me better as a professor in a more erudite university setting.
Having documentation certainly helps, as it's 'evidence'...but the diagnosis waiting times seem universally long, and so it's important that we advocate for self-recognition so that autistic people without an official diagnosis don't assume they need a piece of paper to accept themselves.
I like his conversation about aging and giving us the "ok" to be our autistic selves. I think it's going to take a while for the medical, and society, in general to catch up to the fact that they must treat us with respect. I think we are going to become a force in the minority world, but only if we continue to push back when our feelings and needs are disregarded in the workplace and the world in general.
I am 53 and very scared and sad. I don't know what went wrong. Divorced now. Alone. Work is hell. I have explained about the autism and ADHD and I am now even more isolated than before.
6:58 A medical doctor I saw recently, (seen for the first time as I am inbetween primary care doctors), was believing in the stereotypes, having put derogatory and incorrect language on a doctor note (I said I'm autistic, he put down "autism spectrum disorder"). Legalese required a "doctor" to write a note to prove my need for something that isnt provided by standards... I could not have a therapist write the note because I have not had a therapist for many years (Cant find one, cant get coverage, get denied a therapist, etc). I was recently (within the past two months) denied a therapist for not having a caseworker to approve my need for therapy. Legalese requiring me to get a doctor's note for a "reasonable accommodation" as part of my "needs" going to a new housing unit. This doctor's words were so wrong and bad, I have to find a different doctor and am being delayed moving to a better housing unit because of the paperwork required and deadlines involved. I am severely frustrated at the ongoing ignorance in the professional world, incorrectly writing documents which allow me to have a better life, is downgrading and delaying my access to better things because of the professionals believing in derogatory stereotypes. Argh.
There seems to be a lot of ignorance about autism within the professional world. It's demeaning and frustrating when you're relying on professionals to help you get support.
I was an unfriendly driven workaholic weirdo for decades at work. However I was VERY productive so I did very well ... management loves someone who delivers reliable results, on time every time. It never worried me that I didn't fit in - and I still don't fuss about it.
Yep, I'm not at work to be everyone's friend (which won't happen anyway, because I'm autistic and 'the double empathy problem', etc.) I work so I can buy food and power my laptop so I can make daft TH-cam videos.
Late-diagnosis autistic grief is too real. I'm awaiting my assessment, but after research for the past 3 weeks to understand my daughter (who is autistic) better, I realized I'm probably definitely autistic too., and I'm 41. I grieved for two weeks about my entire life up to this point. I feel like I've been cheated out of my life, I feel like my mom betrayed me by putting so much focus on my youngest brother who has ADHD yet ignored every single struggle I've gone through and instead told everyone I was the "problem child." I'm still grieving a little. My entire life was wasted just because my mom didn't want to to acknowledge I needed help.
The issue or question I have is I am not dry. High 🆙 in empathy, but exhausted a bit. How do you know? Not monotone, but definitely childlike and intelligent.
I'm still awaiting a diagnosis having struggled my whole life. I'm now 61.I wish I had been diagnosed as a child. It would have made my life a whole lot easier. I also feel I have dyslexia and ADHD
I hope you receive your diagnosis soon. I also wish I had been diagnosed as a child - it would have prevented a lot of unnecessary pain. I also have an ADHD diagnosis.
Question for you (both): You both seem to be enjoying this conversation, communicating live using your voices for an hour--even though you've never met before. So then what is it about talking on the phone that you hate so much? I'm autistic--and ADHD--and I really _miss_ the days before smart "phones" (microcomputers where people are constantly multitasking) when I could talk on the phone with a friend for a whole hour--and actually not have to leave the house! The smart "phone" culture has made me increasingly lonely and isolated with age (62) as my generation and older people like my mother and aunts are all dying off or succumbing to the culture of texting & shrinking attention spans ... and an e-mail (what we used to call "letters") longer than one paragraph is marked "TL;DR." Hmm, maybe a topic you could cover in a video? (You think _you're_ old and losing capacity. Wait till you're 62 and be glad you don't have Ehlers-Danlos Syndrome. I too have _no_ fear whatsoever of dying; in fact I'm looking _forward_ to it. I just hope to go quickly! I'm already sick of what my narcissist father calls "malingering.") PS: As Stephen Colbert said a few years ago on his late-night show: "I just got a new app that lets me use my phone as a PHONE." PPS: I can also completely relate to your anger at never knowing you were autistic and all the ways your life could've been better if you'd _known_ why you were such a failure & outcast and, no matter how hard you tried, could never "learn how to act like a normal person," as my father told me was a condition of my ever being allowed to see my mother again in the nursing home she spent the last four years of her life in. And, no, obviously I never managed to achieve his requirement and was also banned from even calling her on the phone. I'm still traumatized by that, especially since her secondary cause of death per her death certificate was "failure to thrive," and I think that was the final blow to whatever will I might ever have had to live--something I really can't comprehend why/how _other_ people have or what it would even feel like!
I hate using the phone because I never know when to speak, or whether the person is interested in what I'm saying, and I usually struggle to hear what the other person is saying. I enjoyed the conversation with Orion because I knew the remit in advance and because I knew he would empathise with that I rarely get to talk about: autism & my autistic experiences.
@@AutisticNotAlien That makes sense. I have a "friend" online who doesn't reciprocate on the phone and definitely isn't interested in what I'm saying. But most of the people I've known all my life must be autistic or have ADHD because we have things in common to talk about, and we get so excited about our topics that we take turns monologuing and interrupting each other. Although those people are getting fewer these days as I'm getting older (and as smartphones have taken over the world & everyone is texting and multitasking on them with ever-shrinking attention spans). I do dread talking to people I don't already know, but that's why we screen our calls via the answering machine. (Maybe you guys are too young to remember answering machines?😉 I remember when they were still new, and if I got one, I'd hang up and call back another time because, "I don't want to talk to a machine!" AND the only people who ever called were people we knew, so we didn't need caller ID.) Or have a prescheduled phone call. Then we can talk for hours, and it feels like five minutes and will make my day.😊
the thing is we're thinking "what's the best way to accomplish this task" meanwhile employers are thinking "what's the cheapest way I can get someone else to accomplish this task with the least input from me"
Someone actually said 'other perceptions are what matters'? At the expense of your perceptions? If you're in the UK, you can request reasonable adjustments under the Equality Act 2010. But, if you feel the environment is too toxic (a situation I've been in many times), then good luck finding a place with people who understand & appreciate you.
@@AutisticNotAlien thank you! jobs are currently difficult im a female in IT. however im writing a book currently and switching my “special interest” to advocating for us. i like you super related to orion and found you through him. keep up the amazing work you’re doing we appreciate you!
@@spectrum_outl13r I'd love to know more about your book. My 'special interest' is also autism advocacy. There is so much advocacy that needs doing - it's not an indulgence, it's a public service! Thank you so much for your kind & encouraging comments.
@@AutisticNotAlien i read so many autistic/aspie biographies while i was waiting for my diagnosis a couple of years ago. well over 40+ books. at the time there was not much out there around the autistic female experience. i’m starting there. this will be my life’s work and contribution to society that i can only hope will benefit, help at least one person out there. time to put my hyper focus to best use cases instead of wasting it spaces where it’s underutilized, unappreciated and/or taken for granted.
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![[Raw & Uncut] Autistic Women Reveal the Truth About High Masking - FULL INTERVIEW](/img/n.gif)
My diagnosis saved my life too. I was teetering on and edge of a very dark cliff. It really says something that we all used the same words to describe ourselves: “broken, alien, worthless, etc” until we find out about our diagnosis. The way I was able to forgive myself for my perceived “wrongness” was life changing. I’ve literally never felt happiness until I got diagnosed at 34 and can honestly say I love myself now. I’m 39 now and it took a little while to work through it and settle in but that information was INVALUABLE. I’m getting married next year, have a house and cats and love my life for the first time EVER 🖤💕 Thanks for sharing your story. It was very similar to my own and really helps knowing there are more people like us out there.
Absolutely ❤I'm happy so far with my diagnosis too! Best of luck and congrats on yr wedding 💍😊
'I was able to forgive myself for my perceived “wrongness”' - yes! We're not wrong, we're just different. Good luck for your wedding.
Love it. Self-ACCEPTANCE is the #1 KEY!!!!
True and real!
That’s a good point that we all felt the same way. It’s fascinating, but also sad.
I believe that finding out I’m Autistic at 29 saved, or at the very least, completely changed my life for the better. It’s been about a year now since the first suspicions were raised.
It’s been a very rocky year, with a lot of grief and meltdowns, but I’m starting to love myself and am slowly becoming more patient, empathetic, and accepting of myself. It is so invaluable 💜
I feel like I’m becoming more *me* every day and really don’t care what strangers think anymore. I’ve started stimming and using fidgets in public, as well as headphones, and it’s so freeing 💜
8:57 You guys are so right. Since ASD is a spectrum, the more voices/YT channels showing different spots on the spectrum is really so valuable in helping people people see ASD in themselves.
Yep, agreed. We need to see how different Autistic Spectrum Difference is.
When I wanted to unalive myself in my teens, the only way I was able to convince myself that I was worthy of living was by accepting that I must have some undiagnosed problem with my brain that causes me to be this way. And that it was not my fault the doctors missed it.
Even after accepting this, not knowing the actual "why" caused me many more years of suffering. I used to push myself into burnout to accomodate the relationship needs of non-disabled people who would make me feel deeply ashamed for not reading their non-verbal cues and for needing help with things they would say were "so simple that a child could do it."
Some days I would wallow in self-misery and ask myself "Maybe I am just a bad person and I don't realize it?"
Needless to say, realizing and accepting I am autistic caused my mental health to SKYROCKET. I no longer hold these thoughts of self loathing. ❤
That's fantastic, and my experience from teens onward is much the same, although I think I pushed forward from pure bloody-mindedness. All of my breakups came from a belief that I must not care, even though I'm sure I did. In love and life, there's a lot of doubt and confusion when you think one thing, but people repeatedly tell you it means something different.
I only sought help after failing at marriage too, and being told I needed to deal with whatever demons I was battling. It was hard to ignore that she was right, so I did. I chased symptoms and started counting until I figured I had depression, was narcissistic, had some dissociative disorder, anxiety, quiet BPD, mild OCD, some type of bi-polar that just went neutral and down, and was just plain arrogant, and a few unnamed extras floating around as well. Turns out I'm AuDHD and having named them, I am getting a little better. The thing that will always keep me going, is that I now know how to help my daughter understand herself in a way I never did. A lot of that understanding is thanks to Orion, NeurodiverJENNt, Yo Samdy Sam, Mom on the Spectrum, and others sharing their stories and realizing it's not just me.
Thank you for persevering. As autistic people, we usually like to know why things are the way they are, and yet we can live for years not knowing why we are the way we are. Again, this is why it's now my life mission to advocate for autistic people - if I can help one person's mental health to skyrocket, everything has been worth it.
@@LilChuunosuke I am all that remains.
Oh dear, I want to reach out and give you a hug. I’m so glad you have that peace of mind now.
@@createwildescapes Thank you so much.
Psychedelics definitely have potential to deal with mental health symptoms like anxiety and depression, I would like to try them again but it's just so hard to source out here
I’ve been researching on psychedelics and it’s benefits to individuals dealing with Anxiety, Depression, ADHD and from my findings, they really work and I’ve been eager to get some for a while but its been difficult to get my hands on them.
The Trips I've been having really helped me a lot. I’m now able to meditate and I finally feel in control of my emotions and my future and things that used to be mundane to me now seem incredible and full of nuance on top of that I'm way less driven by my ego and I have alot more empathy as well
I was having this constant, unbearable anxiety due to work stress. Not until I came across a very intelligent mycologist. He saved my life honestly
@@AlbertoTorres894
I feel the same way too. I put too much on my plate and it definitely affects my stress and anxiety levels. I am also glad to be a part of this community.
@@CarmenOrtiz440 Does he deliver to various locations?
I am an AuDHDer also and i will be 69 next week. The thing about aging is that one's responsibilities decrease greatly with age. I was the mother of six and life was extremely stressful. Now i have no children, no pets, no job. It gets better.
Thanks for a great discussion. 💜
I'm an AuDHDer too. The ADHD can be very disordering at times, but the hyperactivity is the motor that makes me do TH-cam videos!
@@AutisticNotAlien ,whatever gets you to make TH-cam videos is something those of us who watch can be thankful for! Thanks for the smiles. 💜
Never thought of that. 🙏
My shrink thought it was funny that I thought I was autistic. I am 59 and was high masking until I had a breakdown in my 30s. Suicide attempts, learning disability, ADHD, anxiety and Ehlers Danlos syndrome and major depressive disorder are all comorbid with ASD, and I have all of these. Many misdiagnoses as well. Crushingly low self esteem. I am doing better now finally, meds have helped.
@@NightMystique13 I'm so sorry that you went through such torment. I'm part of this community precisely because I want to help to stop people having to go through years of pain and doubt like you and I have done.
It took me 58 years ! to met a woman ( health care ) who knew a specialist who diagnoses in autism . After yearscand years of MISdiagnoses and health care keepers who just didn't listen to me when i said " i think ive have autism " ! Finaly ive got the right person who knew everything about autism and took me seriously ! Know ive almost 60 and ive learn every day something new about me that i thought that everyone has this problems ! And you Orion has a great part of it because you pick every aspect that comes with autism and furely talk about it . Thank you so much for all the afford you make to help autistic people been seen and heard , atleast every day a little better and better . Thank you .
Neil's opening statement resonates and is spot on, despite Orion not quite believing it ... naahh don't quite believe that 😂
Thanks for inviting Neil on your show Orion. You're the Bellwether of the YT Autistic community ❤
Interesting conversation. I'm 53 and self diagnosed after questionnaires, many videos, much reading and the opinions of two professionals. Getting diagnosed seems to be quite hard for many reasons. I feel like I'm happy to go without a proper diagnosis because if I tried to get one and was told I wasn't, I don't know what I'd do. Somehow I've lasted in my job for many years. Perhaps my employer knows there's something different about me and is making some accommodations.
I'm also finding it extremely hard to get an official diagnosis, but like you I don't feel like I have to have it, I know who I am now but it's not that easy to explain to the rest of the world that you just need some accommodations and a little bit of understanding, especially when you don't have that diagnosis from a "professional."
Getting a formal diagnosis will help to convince employers to make reasonable adjustments, but in terms of self-validation, I don't think it's necessary. I knew I was autistic 18 months before my diagnosis (and my diagnostic report just made me feel worse).
The post-realization grief for the past is so real. Thanks so much for sharing.
Thank you. I'll never get over the grief...which is an irony that might make the grief a tiny bit easier to deal with!
I cant dral with it right noe, but I will have to watch this once I am more stable. Realising I was autistic helped me so tremendesly with my selfworth and everything, I still struggle, but knowing made it a lot easyer to treat myself with kindness when I grew up thinking I was a monster
😮😢
Likewise, I just thought I was a bad version of a human being until I found out I'm autistic. We're not broken, we're different.
great conversation! likewise, I was born in '82, and it feels like it was a dark age for autism awareness, and it persists now in our age group and many older people
This is exactly why late-diagnosed autistic voices need to heard. Thank you for your kind comment.
Diagnosed at 62 years old, almost 64 now. The grief and anger over the lost years is real. Partly angry at myself too for not recognising it. Thank you both for sharing and for your insights. Cheers 👍
The grief and anger over lost years is very real. I'm also angry at myself for not realising sooner, but it's all benefit of hindsight stuff - I thought autism was Rain Man. Everyone else seemed to think the same too.
I have a friend who went to her doctor to enquire about an assessment for autism.....the doctor just couldn't understand why after all these years she would want to know......GP in Scotland.....I mean...what on earth???
@@sarahmottram3369 That is not good at all. We all want to know who we are. If an assessment makes you certain you're autistic, the relief and self-acceptance from that is crucial for your well-being, which I thought GPs were in the business of helping with.
This is such a beautiful conversation and what an inspiring guest! @autisticnotalien Thank you so much for talking about your individual Autistic experience, we are all different.
Tack så mycket, Isabella.
so refreshing to come across a video with 2 men talking about their experiences. Thank you gents. Already so many light bulbs going off
I've recently been learning more and more about my flavor of autism, with a pretty high chance of PDA. Despite learning to accept a lot about myself I still often times feel like I'm letting people down. I was one of those "gifted kids" growing up but now it's hard to get/keep a job, I'm very withdrawn socially, and every expectation has always felt like agony to me. Even though I'm learning why, I still feel lost on what to actually do about a lot of it. Despite all that, seeing people who've found success gives me some hope that it'll be okay.
You both are amazing men and I greatly appreciate you. Thank you for taking the time and for putting yourselves out there. Take care!😀
Thank you so much, Barbara.
Orion: you interviewing so many autistic people in social media etc is helping grow and strengthen our community ❤
Yes it is. Orion is very generous to give people a platform to share their own autistic perspectives.
You both made me want to quote a part of a poem by Kristy Forbes "(...) because we see ourselves as broken versions of neurotypicals, and all the while, we are perfectly complete and whole versions of our beautiful, magical, inspiring, resilient, strong autistic selves"
I love both your channels, it's great to hear both of you in the same video. I hope therapists and employers will watch this video, it would be very helpful to so many people !
I feel anger too, for the reasons Neil explained (born in 1981), and also because if I had known much earlier, I wouldn't have made so many choices that were very damaging to myself, because I was trying to improve at "being normal".
Such a wise conversation, thank you Neil, thank you Orion !
Thank you for your comments, Cecile, and also for making me aware of Kristy Forbes. I've just subscribed to her channel.
@@AutisticNotAlien I first discovered this poem through the interpretation of a group of wonderful autistic women from Iceland. It was the first time I really felt I was like them, and then, I started to get informed. This poem probably saved my life, at the time, and I still watch their beautiful interpretation every time I feel I don't have a place in this world, it helps me. Kristy Forbes is wonderful for choosing the most accurate words to describe feelings. You have this talent too.
@@cecile-p what garbage. I am all that remains.
@@gothboschincarnate3931 ?
@@cecile-p It's great that a poem can have such influence. W. H. Auden wrote that 'poetry makes nothing happen', but he was clearly wrong!
My self-realizing at 42 was a HUGE relief because now everything makes sense! And now I can be an even BETTER advocate for my autistic teenager! My life purpose is to give HIM every support I didn’t have, so that hopefully he won’t suffer how I did. His life won’t ever be easy, but he’s got a good foundation, self confidence, and supports to give him a head start. Oh the places he will go!
You're awesome 👌 ❤
This is brilliant. My son is autistic and I want to help him and other autists to navigate this scary world and have their best lives.
Thank you as a former autistic teenager who had a diagnosis. I remember telling my teachers that I had to leave cause I'm having an anxiety attack. Or that everything is too loud. My major had a LOUD consistent atmosphere. Lots of yelling and loud music. Really tough. I have had ADHD forever as well. The people-pleasing is real. find teachers / administrators/vice principals that can go to bat for you. I did and it saved me and helped me get through 2.5 years of high school-i graduated early after that and moved my schedule to community college! It helped me so much more and had some lovely teachers that understood me. Good luck to you and your family!
How Orion, this was the title of my speaker proposal for my upcoming conference. Wow. Stars align.
Thank you Neil for bringing up the kindness we give and the people pleasing we do and the cruelty of people including family members and also the way our kindness is trampled upon. ❤ Love to both of you ❤❤❤
Thank you. I never realised that people pleasing was a trauma response until I did a deep-dive into autism. I just want everyone to be kind to each other.
You too are absolutely awesome and mad respect for you, Neil! 😊
Thank you very much!
That's because despite not being someone you know, a lot of autistics have the feels & connection with them and sense of one another's vibes. It's a gift of ❤️×2
Yes, it's all about connection...albeit from opposite ends of the globe, through a computer, each on our own in our own rooms...🙂
Big thumbs up from me, it was a great interview !
Thank you. Big thumbs up from me for your comment!
Orion Kelly - the Man, the Myth, the Legend.
Thank you to both of you. A diagnosis is really difficult and/or expensive in many countries including mine. I have done several tests online and have very little going on outside the neuro-divergent spectrum. I am very anxious out in the world but managed to mask enough to work occasionally. It has been a huge relief to find out why I have never managed to 'fit' in, have always lurked on the fringes and have often not been able to leave my home. I can't believe I spent so many years in a state of exhaustion, and struggled so very hard to do what other seemingly average minded people managed to do so easily. Born in 67', I was labelled as difficult and an under achiever, was sent to a school psychologist 2 weeks into my schooling and despite finishing my tasks way before anyone else, was often confined to the store room and separated from my class. It has been a long and arduous journey for many of us gen x's. Both my son and my partner are also on the spectrum - and my son suffers with the anxiety I have. (Both adhd and autistic).
Thank you for sharing this. Work is the hardest thing in my life. So many unwritten rules, so many egos, so much bullying...My son is autistic and I worry about how he'll cope, but at least I now know we're both autistic.
I can't thank you both enough for everything you do for the autistic community! Orion, I also have you and a few other TH-cam content creators to thank for my own autistic "ahhha moment." I'm 43 now and am self diagnosed Autistic and ADHD.... it's been about 2 1/2 years since I first began my journey into self discovery. And I can say that this discovery has most definitely saved my life. I was misdiagnosed as bipolar at 25, and have been on every medication imaginable, lithium, depakote, just to name two..... since the meds never seemed to "work" I just assumed that I was broken or just plainly defective. But the truth was that I am not defective but autistic and that's why medication never worked for me. It's wonderful to have that little bit of peace of mind..... knowing that you are NOT crazy and that you just don't NEED the stupid pills that the medical community thinks you are so screwed up without. I've learned that echollia and all of the other "weird" or "odd" things I did/do are totally normal and just fine for a non broken, average autistic person 😁😊! So you both have made such a huge difference in my life and how I feel about myself...... I'll probably never be able to express my gratitude 💙🤓! Now I have the exceptionally difficult task of getting reassessed..... and hopefully getting my "official diagnosis."
It means the world to me to know I'm helping to make a positive difference for fellow autistic people. "I am not defective but autistic" - yes. This is the message I will be repeating every day for the rest of my life.
I'm 24 disabled. Age 4, diagnosed with epilepsy and have had many many other health problems over the years for being 24. I've been different in so many ways and the only person who clicked was my autistic cousin. We share MANY traits and problems we go through one another (always support each other). When I realized it n did more research we now think I may be on the autism spectrum and are going to see a neuropsychologist to figure it out. But just having support is enough for now ❤
Good luck with your appointment with the neuropsychologist. It's great to meet people who understand, isn't it? It's very rare, in my experience, which is one reason why I wanted to do the interview with Orion.
Great interview and informative as always. Thank you both.
Thank you very much.
Thanks Orion. Your channel has been a great support to me. You have encouraged me to make content. It is incredible that the crisis worker considered autism services for Neil. I have been in crisis for 2 months and am still waiting for an initial evaluation. I am 52.
Good luck with your evaluation. It is indeed incredible that a woman I had never met, and still haven't met, suggested within two minutes of starting a conversation that I might be autistic, when everyone else I had spoken with in the preceding 39 years hadn't mentioned autism to me once. And this is why we need to talk about our autism experiences: at home, at work, through TH-cam, etc. Autism isn't Rain Man and counting cards and an Oscar-winning shuffly walk - it's real people.
I look forward to watching. Right now I need to go outside!
Neil is talking about what I've been experiencing for 60 years (I was 57 when I was diagnosed)! Incidentally we're also the same height!!!
Congratulations on your belated diagnosis, Alan. Being short means it's a little easier to blend into the background!
I’m only 10 minutes into this so far, and I think Neil is great, I’ll have to give him a follow, but I am cracking up at how different Australians are from the English, and since I’m also ADHD/autistic, I’m having a wonderful time imagining how a conversation with you two, my therapist and myself, would go. My therapist has ADHD, so our sessions are mostly therapeutic through goofy laughter.
But Neil just said “knowledge is safety” and that hit me like a bag of bricks. Obvious but VERY PROFOUND. I’m getting ready to go back to college with a focus on psychological anthropology.
I’m also loving the discussion about the anger about all the time we’ve lost. I’m still not formally assessed, and I was even DENIED ASSESSMENT two years ago when my ADHD diagnosis was RE-confirmed.
My son was diagnosed at six, I knew he was autistic at four. I fought for two years to get him assessed and I was like “wait, am I autistic too? Because all of this is TOO FAMILIAR?!?” Same for my husband. We have the same therapist, which is a unique situation. But we started with couples therapy, and our therapist has an interesting method where we both have and individual session, then a session together. He said it could help explain so many of the struggles we’ve had in our relationship.
That’s when I started looking for autism resources on YT. And that’s about when I found you, Orion. You have several videos that have helped us.
This is so full of gems! “I’m more upset about aging than death.” YES! Oh my goodness.😮
Great video Orion! Thank you from a yank in the US!
Thank you very much for your comments. Oh yes, I'm furious about the decades I lost to...feeling lost. The self-doubt and pain is baked in now. The template is set. Having assumed I'm a broken version of a human being, I'll spend my remaining years feeling inadequate...and yet I strive, and I must, because I now know about autism and I want to share my knowledge and experiences to help other autistic people and increase acceptance of our differences.
Knowledge is safety, though when you share knowledge, neurotypical people seem to think you're just showing off how intelligent you are. Nope. As well as safety, knowledge is joy and KINDNESS. "See, look at this knowledge I have, I'm SHARING it with YOU."
Nice collaboration! Really interesting conversation to listen to - thanks for sharing it with us all 💚
Thank you very much, Laura.
Interesting using the Shawshank Redemption....a late diagnosis being like an escape , an awakening, the start of freedom. But as you point out Neil the grief and anger too....all those years struggling, self hating and full of anxiety. Having masked our real identity for decades as literally a survival strategy....parallels with institutionalisation. This theme was starkly represented in the film by the taking of Brook's
own life as an older man who couldn't cope outside the prison walls. Interesting how the films which have resonated so deeply throughout one's life can also be given more meaning through a new lens after diagnosis. Thankyou both for such a thought provoking discussion.
Thank you very much, Jeanette. I'm still a bit hesitant about the Shawshank analogy, as it implies that the path to autism realisation is entirely...foul! Your reference to Brooks is far more apt and powerful. His release into the 'real world' is like an undiagnosed autistic person from birth, struggling without knowing why and assuming it's all their fault. And there is a very depressing conversation to be had about autism and early departures...which comes back to coping in such a cruel & inconsistent world and the internalisation of blame. Autism realisation/diagnosis is a crucial step towards accommodations and self-forgiveness...and joy. I'm not going to pretend that I do TH-cam videos solely out of altruism - they're my creative refuge. Autism can, and often has been, an engine for good in the world.
@AutisticNotAlien Precisely. I actually ruminated and worried after I wrote it. The comparison with Brooks was a little dark and upsetting but then that's often the reality of living as an autistic sadly....both in terms of thoughts and experiences.
@@JeanetteInANutshell As my friend Paul (Adult with Autism) says: 'We need to show the dark side of autism too.' Just showing the shiny and fluffy stuff isn't very helpful.
I was 48 when dx as Autistic ADHD
I was 39 when I was diagnosed with ADHD ... and didn't find out I'm autistic till I was 58 because, until recently it was believed that if you have ADHD, you couldn't be autistic and vice versa!
I was 50, but started the process at 44… just took that long to get through the process.
I am still exploring diagnosis but I'm pretty sure that these videos have helped me tremendously thank you. I'm 41 just realizing this. I've always felt like something was "off" or just not normal lol my whole life. Explore various possibilities and this is the first one that hits all of the notes!!!
Thank you. Likewise, TH-cam videos about people's autistic experiences have helped me a lot - in fact, they've been life-changing! I'm so pleased this one resonates so much with you.
Fantastic discussion!
Thank you!
The GRIEF! Yes, this has been a really hard part of late diagnosis. As relieved as I am having a diagnosis now, the grief has been the most devastating part :-(
Excellent conversation, thanks 👍
Thank you very much.
While my diagnosis also came during lockdown, I don't think I would have pushed for one if I didn't experience how amazing I felt during this period of isolation. I did feel bad for everyone and some guilt at my own contentment, but I finally understood that I'd programmed myself to "suck it up" and that I was functioning at a depleted level.
Once I started experiencing general wellness, it gave me the agency and clarity to pursue my diagnosis... only took me 40 years... It's been deeply validating to identify my experiences with the community and its creators, and I wish you all nothing but the best. You all deserve it, and don't convince yourself otherwise.
Thank you very much, Ophmar. I share your thoughts about lockdown, though it's strange that my brain sent me into a whirlpool or rumination during that time, which ultimately led to my autism realisation & diagnosis. The circumstances of one's autism discovery can be negative, but the knowledge is absolutely positive.
Great discussion, lots of resonant experiences and ideas 🖖
Thank you very much.
I'm a 44 female and experiencing my burnout from masking and emotional abuse from partners saying I'm different . Your videos really resonate with me, and I feel like someone thinks exactly how I think and feel! I had no clue I could be neurodivergent until my neurotypical partner suggested it.
I love Autistic not Alien, his jokes and videos really stick with me, despite most other funny jokes i like don’t.
Thank you so much! If I can't be a massively popular autism advocate like Orion, I can at least be an amateur comedian with a tiny but devoted audience!
@@AutisticNotAlien intelligent comedy is a great way to educate people and get your points across!
@@jo45 Humour is definitely an effective way to keep someone's attention and communicate serious messages.
I got the crisis line misdiagnosis, personally - they told me to look into BPD. That's to be expected though, as an AFAB person, especially given the fact this was in the 2000s, when I was in my mid-20s, that happened. It wasn't until my mid-to-late 30s I realised I was actually AuDHD, a revelation that's improved my life immensely.
Im very glad ai was diagnoaed my my primary care dr. After her two girls(daughters) were diagnosd. I'm so thankful. My family is thankful. Ny life was so different and I did have more accomodations growing up-not that i used most of them.
I'm so pleased you received a diagnosis, which hopefully makes it easier to get more accommodations.
I will buy that book AUTISM FEELS. Looks interesting. Andre
hey mate have you ever thought about or have a video on the beneficial emotional release type benefits from getting worked up emotionally, best on your own, have a little cry watching something or thinking about something, feel better afterwards type scenario? I am a bit emotional especially over nice things, people trying to help, stuff like that or a thought trail will go on in my head that makes me happy and I cry. I feel like its healthy in some scenarios, like a stress release valve opens a little. Got to be on your own, I am building to the point I could cry and film it, I actually have cried a bit but its fast to notice on two of my Cairns Lobster youtubes already haha. Andre
I am also audhd, and I also think that the adhd is a bigger problem for me. I only have the official diagnosis for adhd, and the autism diagnosis wait time I was told was 2 years, insurance doesn't cover it, so it would be around $500 out of pocket. My manager and the HR team have been pretty good, but it is scary to bring up a need because I don't want to be put in an audhd box where it's assumed that I can't do something because I'll get overwhelmed. I have a coworker in the same situation which helps, even though I'm 20 years older than them, but we do support each other. I'm getting a new manager soon, so I hope they are just as understanding as my current manager. Wish me luck.
The waiting list reduces quicker the sooner you join it. You have to wait for urgent operations in the UK due to shortages that's life. You deserve more support, patience is a virtue 🙏
Good luck, Sarah. I didn't want to bring up a need either, but unless we do, it will be assumed we're just not trying hard enough. It's like telling someone who needs a wheelchair to walk up the stairs and condemning their attitude when they don't do it.
That was sooo entertaining.
I watch both of you and so was an interesting chat!
More please Orion. Great Playlist but keep it up.
You da man!
Thank you.
How lucky am I to be able to watch you two have a conversation and sharing all of these very valuable insights and thoughts around the topic of autism/adhd. Thanks guys ❤
I am absolutely loving these interviews!
Thank you Orion a great interview yet again, I have enjoyed watching Neil's YT channel, his videos are very humorous and always thought-provoking. 😊
Thank you, Helen.
Kudos to both of you, for your bold and brave voices talking openly about the largely unexplored territory of autism. I have been watching your videos, Orion, since the first ones I saw that described the shame and indignities autistics live with and was "gobsmacked" to have the experience of being seen plainly, and not like a zoo exhibit. I am 66, and will probably never have a diagnosis, even though I actually know what causes it within my extended family. When people tell me I don't seem autistic, I tell them it's a big umbrella! There are now more than 50 genomes identified as responsible for autism symptoms. In my family, it is associated with lesions in the temporal lobe which sometimes cause seizures, selective mutism and more frequently autistic symptoms, delayed visual or auditory or emotional processing, and uniquely individual patterns of cognitive holes and unique combosof the above. I have one daughter who had epileptic seizures (outgrew the seizures, but not the other stuff), which is the link that led me to the autism aspect, and another who is diagnosed schizophrenic and bipolar. I know the bipolar part of the diagnosis is her unrecognized autism, but since there is no prescription for that, and her schizophrenia is drug resistant, the psychiatrist's not particularly interested in addressing that. I do tell my children about what I have learned, because knowing the seizure onset age is like a heads up and can be reassuring (wish I had known when my daughter was taken by ambulance one night in the middle of a grand mal--I thought she was dying). And because the shame they feel is not going anywhere. My advice in dating on the spectrum would be, look for someone with a kind heart and a cast iron stomach (autism and celiac don't mix well). You, Orion, need to think of yourself as the maverick that you are, it is your higher calling to do what you are doing (and however long it took you to get to it is no longer relevant to being successful at it). Your son and many others will be braver because of your work, and they really need to be! Now I am going to get a subscription to Autistic, not Alien!
Thank you, Elizabeth. I hope you enjoy the videos!
'I'm upset more about ageing than death'. Oh yes indeed! And also the post-diagnosis grief and anger is deep with me. I was formally diagnosed at 56 last year. How different my life might have turned out if I'd known I wasn't defective after all.
Also, my diagnosis has wrecked my relationship with my remaining family (mother and sister) who see it as confirmation of my defectiveness. I used to agree with their opinion of me as being a horrible person (they had plenty of examples!), but now I don't and they don't like me standing up for myself. They refuse to make any adjustments for my benefit or try to understand how I experience the world. While Orion and Neil were taking about asking for accommodations from employers I was wondering how I can get those from my own family. 🤔
Great chat, thanks so much Orion and Neil. Please be collaborating again. ❤
Sorry to hear you were treating like that. I'm 42 and was diagnosed at 40 so I can relate.
I'm sorry you've had to experience this. The 'defective' narrative is so incredibly damaging and just plain wrong - but you already knew that.
Your point about asking for reasonable adjustments from your family is excellent. As we're in the minority, we're often dismissed as the uncooperative oddballs who should just try harder to fit in. But accommodating is a two-way street, and neurotypical family members (& colleagues, etc.) shouldn't have everything their own way. We're all human, we all deserve respect and thought and love.
@@AutisticNotAlien Absolutely! Thanks Neil. That's pretty much what I've told my mother and sister - all my life, according to them, I've failed at being 'normal' and now it's their turn to learn some neurodivergent skills... or not 😄
@@ishbelharris1857 'Failed at being normal' - that's a review of my whole life. Oh, hang on, no it's not - it's: 'Finally realised it's OK to be his true autistic self in a world that should try harder to respect & appreciate diversity.'
After I found out I was Autistic, thanks to a good friend who is also autistic, suggested that I do some research found a site took some online tests, I fit Autism to a T. Yes we do deserve respect. and who better to advocate for autistic people than we autistic people who live it everyday. we are not broken, our brains are hardwired differently.
I realized I was autistic at age 67! I am angry about wasting my life thinking I was a freak and a bad person. It is a relief and I have given myself some grace for the mistakes and bad decisions I have made. I am sick of telling people I'm that I have autism and them saying that they don't believe me or that I don't seem autistic or everyone is saying they're autistic these days. 😢
❤
Let a 52 year old woman (diagnosed adhd and DEFINITELY autistic, but undiagnosed with the latter) with CPTSD and an extremely difficult past who is just starting to heal from trauma and living a good life, that getting older isn't such a big thing
@@stellar52 ❤️
I'm glad that you're healing and living a good life now.
42 is a great number, it's been my favourite number ever since I saw the Hitchhikers Guide TV series back in the early 80's. And coincidentally, I was 42 when I self-discovered by accident. This was 15 years ago when I heard Aspergers mentioned on the TV and wanted to know what it was, so looked it up and first came across online tests. I filled in the multiple choice questions innocently and honestly and was surprised to find I scored as very likely Autistic on them, so started researching Aspergers/Autism traits and experiences in more detail and found nearly all of them resonated strongly, as well as ADHD. It made sense of every difficult experience I'd encountered over the many years before, my various hypersensitivities, fussy eating, acute special interests, etc, and gave me insight into self-accommodations I can make to improve life. While I can think back and say it would have been useful to have known back in my school days, things were different back in the 1970's/1980's, there was a lot more stigma around things, even just having divorced parents or being gay. So I've not grieved being unidentified, I was just thankful that I'd understand myself better from then on, having worked it out for myself at last. The difficulties don't go away, but I'm able to avoid some, be prepared for others, and not feel so bad about myself because it's just how I am. Partly because I'm able to self accommodate and get by, and partly because of late self-ID, but probably more because of ADHD procrastination, I've never got round to seeking formal diagnoses. I'm 57 now, is it worth going through the hassle? It could be validating to have confirmation that I was right, but possibly devastating at this stage if they said "No, you don't quite meet the bar, you're wrong about your entire life experience!" Is it possible to spend 15 years researching and listening to others experience, and still be deluded that you are one of them? I'm not hypochondriac about other conditions, I've self-diagnosed Shingles and Acid Reflux when I had them, and had them confirmed, but never anything I haven't had. Sorry, I'm rambling now.
Apologies for the lengthy post and oversharing. It was the '42' that set me off.
Love your content Orion, and great interview with Neil. Another quirky channel to subscribe and binge-watch, and from a fellow Brit too. Thanks!
Thank you for sharing your experiences, Russ. I think an official diagnosis can be validating, though for me it was actually the opposite. Still, the piece of paper (so to speak) has made conversations at work easier. But an official diagnosis is, in my opinion, not essential in terms of self-acceptance and self-forgiveness for all the years in which I struggled as an undiagnosed autistic.
I'm 30. No one has ever really questioned I might have autism, and despite being in a constant battle with myself for the last 10+ years no one's bothered to test me. No one's noticed except for a select few who I've lost contact with or who's unable to help me. I've always just been "quirky" or "difficult". Or "lazy".
I have an ADHD diagnosis though (from 2 years ago). The bizarre part is that I pretty much had to diagnose myself. I had a terrible psychologist who didn't really say much at all and it felt like a test or school exam, hence why it felt like I diagnosed myself.
More recently (January) I went back to get an assessment for autism. I sat down. I was asked a single question: "So what makes you think you have autism?"
I froze and I could not answer. He didn't ask any further questions. He decided for me that it was a bad time to do a new assessment (is that the right word?). I had just lost my mother a few weeks before that, so I was obviously hurting pretty bad (still am). I then got LOCKED OUT for half a YEAR. Not to mention I was removed from their system, so on top of being locked out I need to get on a waiting list to even talk to someone again. I struggle with words a lot, and I never really manage to say what's *really* on my mind. But I try.
Thank you for all your videos. It gives me hope. It makes me feel less lonely, and less insane I guess.
I am truly sorry for your loss ❤.
Our experiences are pretty dang close. Very close in age as well, just a difference in the time frame.
Diagnosed with ADHD and death of family member happened when I was a kid.
The medication they gave never worked properly so I gave up all together.
The doctors gaslit me saying “it’s just ADHD, you can’t have more than that, you are just anxious and shy” type of response.
Lost virtually all my friends & relationships over the years and I could never understand why.
Now, 20 years or so later. I found these vids and comments that are almost, if not my direct experience, to the point of getting goose bumps / chills over and over.
I’m going for ASD / AuDHD evaluation currently.
Only to find out they don’t even have the clinic set up yet for this specialist, so the wait time is unknown.
I wanted to thank you 🙏, and for you to know you are heard. Sending positive thoughts your way in these difficult times ❤.
I'm sorry about the loss of your mother, and I'm sorry you have had such negative assessment experiences. I know it's no consolation, but I also struggle to say what's on my mind (I much prefer writing things down/scripting videos), and my official autism report was appalling. The autism community here has made me feel less lonely and given me hope.
Love this!
Thank you.
I recoante so mutch with you Neil. thank you fore sheering :).
My pleasure.
Really enjoying this conversation. Late dx F 58 here. Cannot believe all the difficulties w school and work/jobs that have troubled me so much and likely efffected my positions. You fellas know about discrimination laws in USA ??? Thank you for your advocacy - both of you 💙💙👊👊
Thank you. I don't know about the discrimination laws in the USA, but I'd be fascinated to know about them. I love reading about laws, and I cannot stand discrimination!
Wow, never thought of that before, I have had a few different counsellors and several different CBT professionals and none of them ever suggested autism....how is that possible!
This guy resonates with me, his experiences with being on the spectrum etc…man such a brilliant upload. Love it, thank god for this kind of content. If it weren’t for the likes of this channel etc, I’d never know I’d too was on the spectrum….trouble is I’m doing exactly what he mentioned, re beating yourself up. I’m currently undiagnosed (but on the waiting list) and I’m beating the sh*t out of myself and have been for many many years (I’m 60) and ripping my hair out due to the ignorance of my situation (I’m also living with abusive childhood and relationship trauma). Personally, I’d like the diagnosis in order to open more support doors that are currently closed to me (Cornwall is rubbish for services like this)
Great story, Orions book and TH-cam was an awesome resource for me during my discovery. So many things y'all said just resonate with me especially when you were talking about listening to the TH-cam and then hearing someone speak like you've always wanted to hear people speak and understand
Both of you are doing super important work in raising awareness, thankyou for all that you do. I've learnt so much about autism and about myself through watching your videos. This was a great conversation with some excellent insights. Keep up the good work!
This was AMAZING!!! Thank you!!!!!!! (Gonna share this with a couple close friends who are open to understanding)
Thank you. It's great that you're sharing this to increase understanding. Other than my massive ego, this is exactly why I wanted to do the interview.
The grief aspect is real. I'm not formally diagnosed yet, but there's no other explanation that explains to me an otherwise consistently baffling experience for the last 40 years of my life. The grief is a response to the unnecessary trauma as a result of a misinformed self identity, based on NT definitions of normality.
'Unnecessary trauma as a result of a misinformed self identity' - wow. You've absolutely nailed it here. For years, I was trying to be someone I'm not without even knowing I was acting. 40 bloody years of confusion, doubt, and trauma. But I can look back or look forward, and these discussions and making daft videos allow me to look forward.
I got my assessment and diagnosis when I was 47. The science part of me says no going back, I have a 6yr old and 400,000,000,000,000:1 odd of being born says I wouldn't want to turn back time even if it were possible.
Struggle all my life with employment, still am. Struggles with housing all my life and still it is my top worry (even though I am in stable housing at the moment). Everything ends up being a worry and anxiety but gotta keep on keeping on . Life is a hellova ride.
Work is the biggest worry and anxiety-inducer in my life. Oh, to be a full-time TH-camr!
Thank you, Orion
I have not gotten a diagnosis yet I have accepted it myself and I am already falling apart. At 33 I was diagnosed with ADHD and once medicated for that my brain was quiet enough to hear the autism. I do think autism saves my life as a teenager because it was the voice that said No that's not a good idea! When my ADHD impulsiveness said it was a good idea.
I'd never thought of autism as a helpfully cautious internal voice before - thank you for that!
@@AutisticNotAlien Your welcome! Every little bit of silver lining you can find helps.
@@cierraallen9288 Absolutely. 🙂
I read in an autism self help book that adjustments at the workplace for autistic people, such as clear responsibilities, making it clear who you have to go to to ask a question or get something done, treating questions as normal and just matter of factly... HELP EVERYONE and increase productivity. because everyone understands the tasks better and has a clearer idea of how to tackle it. because it's... about the task.
and I know the anger... I'm still working on an official diagnosis.. but my suspicion is strong. and I look back at the doctors I've been to ... at the therapist I went to once a week for 3 years, saying things like "I feel like an AI trying to figure out how to be a human". and she didn't bring up autism once. she did help me but she is so clueless about autism. and I go to doctors about the fatigue and the muscle pain that comes with it... I don't even have big mental issues any more. I never loathed myself. I was always of the strong opion that the world around me needed to do better... but I had that shitty loss of self from too much masking. and I look at all the people who should have helped me. the doctors and the teachers. and.. they failed me. the deal of a sociaty is that we help eachother out and they didn't do that. they failed me on a fundamental level of being social.
for fuck's sake. in primary school I was sitting at my table, head bend forward, face hiding behind my hair, scratching my scalp often to the point where I had blood under my nails because it was too loud. how did that go unnoticed? how?
How did it go unnoticed? Indeed, but sadly awareness of autism was minimal back in the day, and there are still plenty of people today who think autism is Rain Man.
A wonderful interview! Thank you both 🙏🙌
A few months ago, I (63) realized I was autistic, very likely Asperger or something like that.
I have yet to be diagnosed but with an AQ score of 42, it’s almost certain I am autistic. I can tick almost all of the properties boxes of Aspergers.
I would like to have been diagnosed decades earlier but that wasn’t done then. It would have saved me from many disagreements with my bosses, perhaps understanding of my behavior by colleagues, not loosing several friends etc. I would have chosen a different profession because it would have saved me from being too tired to get out of bed many times and a heavy burnout.
But life is as it is, I can’t turn back the time. I simply have to cope with life while being autistic.
I’m very happy now that I no longer have to search why I’m different and am difficult sometimes. I now know why I’m out of energy constantly, that I’m in pain more or less 24/7, that I have sleeping and intestine problems.
Knowing that makes life a bit easier.
Yes, we can't turn back time, but we can be easier on ourselves with our belated knowledge that we are autistic, different, and have needs in a world that isn't designed for us.
I started watching your videos and never realized that I had so much in common. Now I will have to get tested as I always known I'm different
Yes.
And yes. And now i think im kinda neat. AND im not a narcissist! Hooray!
Yay!
25:10 honestly I find it incredibly hard asking anyone for adjustments. And if there were any adjustments available I wouldn't want to risk the confrontation and/or conversations following from that. I got a health care card for low income for a year at 43yo. But then because I got fired and then solely relied on my own business, I could no longer get the health care card. I applied 3 times online, each time rejected. It might only take a phone call to ask and/or explain my situation but I cannot pick up the phone. I've been trying to work myself up to it for the past 2-3 years, I'm still not able to. I just have to bear the additional costs. And there's no one out there to help us with these things, because we are 'low support needs' right. To me that just means that others can take advantage of us easier.
Have you had an assessment of your support needs? You can't be told you're low without an assessment. Reach out to where diagnosed you or definitely seek out a diagnosis if you haven't been diagnosed yet. You deserve more support
Is there anyone who can literally speak on your behalf so that you can get reasonable adjustments?
@@tims9434 I am self-identified. The idea of going through a diagnosis itself is very daunting, I feel it's better to avoid that in order to avoid yet another burnout that may last for years. Not to mention the cost of it. I cannot afford it. I did just discover however through Amaze that one can obtain a diagnosis at a cheaper rate through University Psychology Clinics. I may put myself on a waiting list when I feel comfortable with it, however I am quite certain that I am ASD-1, and an official diagnosis is not going to help any more than self-identification.
@@AutisticNotAlien I don't think so. And it would be awfully embarrassing to do so. I wouldn't want to either ask someone, or put someone in that position. I don't pay myself a salary because my profit is too low through my business. This is probably the reason why they keep rejecting my applications. It would be nice if they could tell me though; then I could at least script for the phone call somewhat.
Both of you are so articulate. I'd love to start an autism channel but would know what to say...
Thank you. You can start an autism channel if you want to. If you have had autistic experiences, you will have plenty to say. The more autistic voices are heard, the better. Happy to help you set one up (my email is on my channel).
@@AutisticNotAlien Thank you for the kind offer, I'll keep it in mind if I go ahead with it.
@@Allthepills Please do. No pressure though. I'm always here to share ideas.
⭐️⭐️⭐️⭐️⭐️
Congratulations, Neil!
Thank you! (We meet again!)
@@AutisticNotAlien ❤️🪽
Regarding death, I'm with Woody Allen.- "I'm not afraid of death, I just don't want to be around when it happens!"
Excellent video! 👍💐
❤❤❤❤from Denmark
😍
For the last month I've started to research autism through the eyes of people like yourself who actually have autism at at 63 y.o. I'm I'm a 100% certain I'm autistic. About 10 years ago I was diagnosed with severe ADHD but now I don't think the ADHD is quite as bad as how the autism has affected me. If I were to talk to one of you for an hour one on one I don't think that you would come to any other conclusion. And hopefully someday I'll have a chance to talk to somebody. I am so alone right now and the things that have happened to me are likely worthy of a book or movie, lol.
My ex-wife did some investigation and she found one place that I could get diagnosed at here in Michigan in the States For $1,400 and they said the waiting list is into October or November of next year. And I think it's crucial that I get diagnosed and I'm going to bring this subject up with my psychiatrist because now I realize I have masked everything where he has no idea what I'm like behind the mask. And what's truly terrible about this is that I realized being here alone by myself and a farmhouse that I masked my symptoms even in the house. Well I went out and bought a rocking chair which I haven't had in about 3 or 4 years and it was instant relief because that's how I stim. And boy do I rock and yet I've been teased and mocked for it for decades.
So thank you guys for getting this information out to people.
Wishing you all the best for your eventual diagnosis. I have a very vivid picture in my mind of you in your rocking chair! A farmhouse in Michigan sounds idyllic. I have happy memories of being in upstate Pennsylvania. So much countryside! England is basically the size of one US state, isn't it?!
@@AutisticNotAlien Lol, that about sums it up. Unfortunately I'm going to have to move because there's a lot of mold that I'm extremely sensitive to here. I actually have an interview for a place in 6 hours. I'm hoping this move will help me because this place has gotten away from me and the clutter is exhausting.
I really appreciate your comment because I was beginning to think I was invisible. I have so many questions and comments for the autism community. I spent most of my life trying to figure out why I was different. And the last 4 or 5 years I've spent alone trying to figure out why everyone abandoned me.
Most of the time I just chalked it up to me being an ADHD ENTP with having an above average IQ. What I've garnered over the last 5 weeks has made me realize that we are the normal ones. And I'm being serious.
Anyways I should stop here since I'm a little sleep deprived at the moment and I don't want to start burning bridges by over sharing and going too deep into all my theories and the various connections I've been making.
Thanks again for your comment. It means a lot to me.
@@jamesgoetz4625 Hi James. I'm really sorry it took so long for me to acknowledge your initial comment - I've tried to respond to comments in instalments, as there have been so many (which is a great thing!) What you said about us being 'the normal ones' is very important - there are lots of us around, though we're still in a minority, so we need to form a community/communities.
Never worry about oversharing with fellow autists - we generally love info and helping each other! Theories and various connections = my brain!
Thank you for *your* comment. The feeling is mutual.
@@AutisticNotAlien I didn't want to make you feel bad. You're the only one that responded at all. It's just been hard because I've been alienated by so many people the past few years. People tend to avoid me like the plague but it might get better because I found a new place to live where I'll at least I'll have new people to meet. That at least gives me better odds of finding friends, lol.
Right now all I need is a fishing buddy. I don't even care if they talk to me at this point, lol.
I never really saw my self as intelligent but over the years that's changed. Do other autistics feel that they talk over most people's heads? That's been my experience. Most people I meet lack curiosity about the world around them or they simply can't follow my logic. And most people seem very content to only talk about superficial topics.
One of my theories is that a lot of the issues we have are a result of today's society. I don't think it was quite this bad in the past.
@@jamesgoetz4625 'Most people I meet lack curiosity about the world around them or they simply can't follow my logic.' - Yep! Same here.
I ❤Niel’s piddly channel!!!
100%
For the first time in my life (since my late/self diag) i know im not going to try to end it all today, that this life is hard but okay , it's autism, not necessarily depression, AND THIS WILLLLLL PASS.
"Oh it's just that..." helps SO much.
He sucks to listen too but you know it's just the trauma talking but he'll go away after a while
Yes, it will pass. Autism-related depression weaves in and out of my days. Depression is a lens. Other lenses are available.
@@AutisticNotAlienI'm so glad depression isn't part of it for me. For me "overwhelm" is the driving force. Now that I know that it is actually a recipe full of symptoms of autism, I have an entire arsenal of tools to combat and recognize it before it gets to that "end" point, and to be able to wriggle my way out if I get too close to the tipping point.
:::THE DIAGNOSIS CHANGES EVERYTHING:::
thanks for what you are doing and how you are doing it!
@@user-ye1go6hw9r Thank you for sharing and keeping going.
Listening to successfully married, parents, running YT channels, looking at my own life and ONLY wanting it to end.
I have nothing but “stuff”. Loads of guitars, loads of art works… not a single active friend.
I have lots of stuff too...and a lot of baggage in my mind from a lifetime of anxiety, depression, and trauma. I know the 'married with kids TH-camr' image can give a very one-sided impression. The fact is that I take each day as it comes, and when life is really stressful, sometimes it's minute by minute. I am wracked by self-doubt and I loathe myself. I can either cave in or reach out & help people whenever I can.
It might sound corny, but I increasingly see people within the online autism community as my friends. Most people don't want to know me in real life. It hurts, but I understand.
What's your story? For a start, I'm already fascinated by your guitars and art works.
❤
@@AutisticNotAlien thanks for replying.
My story is depressing as fuck mate. Don’t worry yourself with it. Nobody else has. 👍🏻
@@ascgazz I am worried though, and I'm interested. Please share if you want to. The main reason I'm here is to help, as twee as that may sound. I know how horrendously isolating and depressing it is to be autistic in this world.
@@AutisticNotAlien you know how “horrendously isolating and depressing it is to be in this world”, to be you, though, and only you.
I don’t think you’re the right person to deal with my bullshit, with all due respect, I think I’d seriously depress you if I actually sent the reply I just deleted, in favour of this one,
Not to say I don’t appreciate the thought.
The one thing I’ve wanted longer than anything, is to not be, and it’s a motherfucker to back out of.
I used to explain my executive function problems, meltdowns, difficulty following arbitrary syntax, et cetera, as due to dyslexia, Anxiety? I thought that it was a deeply ingrained bad habit. I had prayer, several rounds therapy and meditation to deal with that. Indeed I probably was depressed, but worry, anger, anxiety, & possibly depression, all feel the same to me. Now that I realize the cause, this has made things vastly easier. On a humorous note, when I "came out" as ASC, most of my family claimed that they already knew - lol
I am realuzing so much but it is too late. I have bit off more than I can chew. I have too much student loan debt. Can't keep a job. Aging out. Just too late really. I really appreciate what you do though.
I was diagnosed later in life (at35), and can relate to the grief of being late diagnosed. This video points out an important fact - paperwork and disclosure are vitally important! Having a documented disability does open up the avenue for accommodations. Sadly, I live in rural America and got “creatively let go” as a school teacher for being autistic. Such is the sorry state of the American educational system. If I had the documentation then, I might have a legal claim. Hopefully, having the documentation to back me up will treat me better as a professor in a more erudite university setting.
Having documentation certainly helps, as it's 'evidence'...but the diagnosis waiting times seem universally long, and so it's important that we advocate for self-recognition so that autistic people without an official diagnosis don't assume they need a piece of paper to accept themselves.
I like his conversation about aging and giving us the "ok" to be our autistic selves. I think it's going to take a while for the medical, and society, in general to catch up to the fact that they must treat us with respect. I think we are going to become a force in the minority world, but only if we continue to push back when our feelings and needs are disregarded in the workplace and the world in general.
I completely agree. TH-cam videos are part of the push back. Still a lot of pushing to do though...
I am 53 and very scared and sad. I don't know what went wrong. Divorced now. Alone. Work is hell. I have explained about the autism and ADHD and I am now even more isolated than before.
6:58 A medical doctor I saw recently, (seen for the first time as I am inbetween primary care doctors), was believing in the stereotypes, having put derogatory and incorrect language on a doctor note (I said I'm autistic, he put down "autism spectrum disorder"). Legalese required a "doctor" to write a note to prove my need for something that isnt provided by standards... I could not have a therapist write the note because I have not had a therapist for many years (Cant find one, cant get coverage, get denied a therapist, etc).
I was recently (within the past two months) denied a therapist for not having a caseworker to approve my need for therapy.
Legalese requiring me to get a doctor's note for a "reasonable accommodation" as part of my "needs" going to a new housing unit. This doctor's words were so wrong and bad, I have to find a different doctor and am being delayed moving to a better housing unit because of the paperwork required and deadlines involved.
I am severely frustrated at the ongoing ignorance in the professional world, incorrectly writing documents which allow me to have a better life, is downgrading and delaying my access to better things because of the professionals believing in derogatory stereotypes.
Argh.
There seems to be a lot of ignorance about autism within the professional world. It's demeaning and frustrating when you're relying on professionals to help you get support.
I was an unfriendly driven workaholic weirdo for decades at work.
However I was VERY productive so I did very well ... management loves someone who delivers reliable results, on time every time.
It never worried me that I didn't fit in - and I still don't fuss about it.
Yep, I'm not at work to be everyone's friend (which won't happen anyway, because I'm autistic and 'the double empathy problem', etc.) I work so I can buy food and power my laptop so I can make daft TH-cam videos.
Late-diagnosis autistic grief is too real. I'm awaiting my assessment, but after research for the past 3 weeks to understand my daughter (who is autistic) better, I realized I'm probably definitely autistic too., and I'm 41. I grieved for two weeks about my entire life up to this point. I feel like I've been cheated out of my life, I feel like my mom betrayed me by putting so much focus on my youngest brother who has ADHD yet ignored every single struggle I've gone through and instead told everyone I was the "problem child." I'm still grieving a little. My entire life was wasted just because my mom didn't want to to acknowledge I needed help.
The issue or question I have is I am not dry. High 🆙 in empathy, but exhausted a bit. How do you know? Not monotone, but definitely childlike and intelligent.
Empathetic and intelligent - great combination.
I'm still awaiting a diagnosis having struggled my whole life. I'm now 61.I wish I had been diagnosed as a child. It would have made my life a whole lot easier. I also feel I have dyslexia and ADHD
I hope you receive your diagnosis soon. I also wish I had been diagnosed as a child - it would have prevented a lot of unnecessary pain. I also have an ADHD diagnosis.
Question for you (both): You both seem to be enjoying this conversation, communicating live using your voices for an hour--even though you've never met before. So then what is it about talking on the phone that you hate so much? I'm autistic--and ADHD--and I really _miss_ the days before smart "phones" (microcomputers where people are constantly multitasking) when I could talk on the phone with a friend for a whole hour--and actually not have to leave the house! The smart "phone" culture has made me increasingly lonely and isolated with age (62) as my generation and older people like my mother and aunts are all dying off or succumbing to the culture of texting & shrinking attention spans ... and an e-mail (what we used to call "letters") longer than one paragraph is marked "TL;DR."
Hmm, maybe a topic you could cover in a video? (You think _you're_ old and losing capacity. Wait till you're 62 and be glad you don't have Ehlers-Danlos Syndrome. I too have _no_ fear whatsoever of dying; in fact I'm looking _forward_ to it. I just hope to go quickly! I'm already sick of what my narcissist father calls "malingering.")
PS: As Stephen Colbert said a few years ago on his late-night show: "I just got a new app that lets me use my phone as a PHONE."
PPS: I can also completely relate to your anger at never knowing you were autistic and all the ways your life could've been better if you'd _known_ why you were such a failure & outcast and, no matter how hard you tried, could never "learn how to act like a normal person," as my father told me was a condition of my ever being allowed to see my mother again in the nursing home she spent the last four years of her life in. And, no, obviously I never managed to achieve his requirement and was also banned from even calling her on the phone. I'm still traumatized by that, especially since her secondary cause of death per her death certificate was "failure to thrive," and I think that was the final blow to whatever will I might ever have had to live--something I really can't comprehend why/how _other_ people have or what it would even feel like!
I hate using the phone because I never know when to speak, or whether the person is interested in what I'm saying, and I usually struggle to hear what the other person is saying. I enjoyed the conversation with Orion because I knew the remit in advance and because I knew he would empathise with that I rarely get to talk about: autism & my autistic experiences.
@@AutisticNotAlien That makes sense. I have a "friend" online who doesn't reciprocate on the phone and definitely isn't interested in what I'm saying. But most of the people I've known all my life must be autistic or have ADHD because we have things in common to talk about, and we get so excited about our topics that we take turns monologuing and interrupting each other. Although those people are getting fewer these days as I'm getting older (and as smartphones have taken over the world & everyone is texting and multitasking on them with ever-shrinking attention spans). I do dread talking to people I don't already know, but that's why we screen our calls via the answering machine. (Maybe you guys are too young to remember answering machines?😉 I remember when they were still new, and if I got one, I'd hang up and call back another time because, "I don't want to talk to a machine!" AND the only people who ever called were people we knew, so we didn't need caller ID.)
Or have a prescheduled phone call. Then we can talk for hours, and it feels like five minutes and will make my day.😊
the thing is we're thinking "what's the best way to accomplish this task"
meanwhile employers are thinking "what's the cheapest way I can get someone else to accomplish this task with the least input from me"
Often true, I think.
work issues right now. was told others perceptions are what matters-but of course my perceptions don’t. trying to find other employment with no luck.
Someone actually said 'other perceptions are what matters'? At the expense of your perceptions? If you're in the UK, you can request reasonable adjustments under the Equality Act 2010. But, if you feel the environment is too toxic (a situation I've been in many times), then good luck finding a place with people who understand & appreciate you.
@@AutisticNotAlien thank you! jobs are currently difficult im a female in IT. however im writing a book currently and switching my “special interest” to advocating for us. i like you super related to orion and found you through him. keep up the amazing work you’re doing we appreciate you!
@@spectrum_outl13r I'd love to know more about your book. My 'special interest' is also autism advocacy. There is so much advocacy that needs doing - it's not an indulgence, it's a public service! Thank you so much for your kind & encouraging comments.
@@AutisticNotAlien i read so many autistic/aspie biographies while i was waiting for my diagnosis a couple of years ago. well over 40+ books. at the time there was not much out there around the autistic female experience. i’m starting there. this will be my life’s work and contribution to society that i can only hope will benefit, help at least one person out there. time to put my hyper focus to best use cases instead of wasting it spaces where it’s underutilized, unappreciated and/or taken for granted.
@@spectrum_outl13r I'm jealous of your ability to read so many books, and I admire your positive attitude regarding the benefits of your hyperfocus.