Late Autism Diagnosis - Challenges & Benefits of Adult Diagnosis
ฝัง
- เผยแพร่เมื่อ 16 ต.ค. 2024
- Hi! I'm Orion Kelly and I'm Autistic. On this video I'm joined by special guest Leslie Reyes to explore the topic of late diagnosis for autism. Plus, we share our personal diagnosis experiences as an #actuallyautistic people. #orionkelly #autism #asd #autismsigns #whatautismfeelslike
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ABOUT ORION:
Orion Kelly is an #ActuallyAutistic vlogger (TH-camr), podcaster, radio host, actor, keynote speaker and Autistic advocate based in Australia. Orion is all about helping you increase your understanding, acceptance and appreciation of Autistic people.
#AutisticVoices #ActuallyAutistic #Autistic #Autism #OrionKelly #ThatAutisticGuy #ASD
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Related: autism, autism diagnosis, Orion Kelly, orionkelly, thatautisticguy, tiktok videos, autistic, autism in adults, autism in women, autism in men, autism spectrum condition, asd, autism spectrum disorder, aspergers, aspergers syndrome, autism in boys, autism in girls, dsm, dsm5, autistic adults, autistic kids, autism mom, autism parent, autism family, autism speaks, autism awareness, autism acceptance, autism at work, am I autistic, adult autism test, autism disclosure, autism therapy, autism prevention, autism meltdown, autistic burnout, autistic behavior, autism symptoms, autism traits, autistic signs, what autism feels like, love on the spectrum, stimming, echolalia, anxiety
"Alone in a crowd ". That pretty much sums it up alright 🙂
I was diagnosed at 50 as well...I was told by a psychiatrist that a diagnosis was pointless because there are no protocols for assessment or treatment in adults. I was told that I was too high functioning to qualify based solely on the fact that I can drive a car....but my life has been massively negatively impacted by my undiagnosed autism. Its amazing how little understanding there is in professional psychiatry. These videos have been WAY more helpful.
I live in Canada and I mentioned during an appointment with a therapist that I think I may have autism, she basically just said she doesn't deal with diagnosis. I didn't say that's what I was looking for, that's what she assumed. I had a big list of the reasons why I thought so, and it really would help her understand me if she would have been even remotely open seeming about it. I felt so shut down. I had also done an anger management exercise and I realized a lot of things that upset me are to do with being autistic, so then I felt like there was no point in bringing up any of that stuff either. She steered the whole conversation and I felt like she didn't get a good sense of me at all from our talk. I felt so much worse after the appointment than before.
A lot of autistic people can drive. Where did this doctor get a degree? That's just not true like at all. And a lot of adults are treated for it so, again, that doctor should be quite red faced.
im high functioning in some things but cant drive a car. do i qualify for the spergbucks? lol
Pointless is a slight exaggeration. It can potentially bring accommodations at work and provide some protection against punishments for autism related behaviors. It also helps better estimate the amount of need for social services related to the condition.
I'm probably not going to bother to get one as the previous evaluation under the previous diagnostic criteria was still relatively clear that I probably have it as I wasn't technically capable of being diagnosed at the time due to ADHD, but now that that conflict isn't recognized, I'd get an autism diagnosis of some sort now.
@@heedmydemands Time for a new therapist. Sorry that happened. Yuck.
Here is to all the late diagnosed who got 'diagnosed' by the algorithm - thanks for being better at this then most therapists :P
Right?!?! 😆
To be fair, our friend the algorithm probably knows us better than any human... it just wants to sell us ads. It's like a friend who joins an mlm.
@randyfrueh4337 funny enough for me
I was diagnosed ADHD at 14 (26 now). I've always lived on Facebook and last year I suddenly started getting AUDHD content. I found it weird asf bc (at the time) I'm not autistic.
Fast forward 3 burnouts and 2 meltdowns in that same year. I decided to take the EQ, AQ50, and raads-r. I took them and it indicated VERY likely to be diagnosed with ASD.
Honestly, I'm thankful the algorithm found me 🤷🏾♂️ i honestly don't think I would have survived another burnout.
*i did make a psych appt and the at the end of the consult she wanted to move forward with adhd and autism testing soooo yeah. I hope things go well. I'm tired of feeling like I'm not supposed to be here.
Thank you Orion for having me on your show! It's been great seeing these comments and they have been as helpful to me, as you all claim this video has been helpful to you. I still struggle with feeling like an "Imposter of an adult" and your comments have been somewhat "validating" for me. Thank you again, for watching and thank you to Orion for seeing me and letting me be seen!
Thanks for being here!
I am pretty sure I have autism and I also have this experience of feeling like an imposter as an adult and as a mom too. I can tell I don't fit in with the other moms, they're real moms and real adults it feels like. They know how to dress and how to act and stuff
Thank you so much for this video. It is so helpful to learn from others who have walked this walk before me.
I too get accused of being angry when I am merely struggling to get through sometimes. Its as though I am speaking another language sometimes. However, I am learning and now my husband knows what's going on he is being so helpful and understanding.
Leslie, thank you.
I used to think my difficulties were pms, or because I was half foreign, or because I was an only child with no extended family in England.
I was a 'square peg' but now I KNOW, thank goodness. The assessment is more for my husband now so he can justify to his family. I am retired so I dont really need proof.
When I feel overwhelmed, instead of always blaming my husband for not caring or not listening properly, I realise it could actually be me and I go upstairs and take a break.
So much to learn.
Unmasking is easier with him because he is also learning from the internet what he has to deal with and I can be myself with him anyway.
Not so easy with neighbours, acquaintances and husbands offspring Im afraid.
Sometimes its stifling having to wear that invisible mask but if we manage to get confirmation following an assessment, we will disclose to his family and anyone else we want to tell.
Thanks again both 😊
@@heedmydemands
I hope you get it sorted out soon. Nobody should feel isolated or shut out.
If you have a good gp they can help you get on track. I am at the same stage of discovery as you I think.
Orion is great on yt and being able to learn from him is a lifeline....
x
I just wanna say that you are a wonderful person ❤ I have been trying to be ok with possibly being autustic. My son has recently been diagnosed, and I have been looking up videos to better understand said condition. I have related to you so much in this video and on many topics.
I’m 39 and figuring out I’m definitely on the spectrum. I agree with her, when I try to tell people I think I’m autistic they look at me like I’m insane and then I try to explain and they completely lose interest because they simply don’t believe me. 😢 it’s really hard to cope with. We just want to be understood and understand ourselves.
I think a lot of people really don't know what autism is, I didn't before I got the idea that I might be autistic. But also do they want to learn? Maybe not, which would be too bad for us
My daughter was diagnosed with autism spectrum disorders and intellectually disabled😢😢😢. My question is why does my daughter feel like she has to repeat and repeat everything that she says? 😢
It drives me crazy 😢😢😢.
She also has a anxiety disorders 😢😢
Where she's unable to leave the house !!! To do anything.
I'm unable to get her to go to the doctor for any reason 😢.
All she does is play her X box.
She also acts like she is about 10 years old, she will be 39 In December. Is there anything I can do to help her.
What is the life expectancy of someone who has her diagnosis.
She was only age 16 when I was told about it.😢😢😢 . I really appreciate your help
@@nonya.bizness
Thank you for answering my questions.
It helps me alot with being able to understand what my daughter is going through.
I just have to show her that I love her no matter what.
The whole “I’m not acceptable therefore I need to work harder at…” thing that late diagnosed or never diagnosed people experience just breaks my heart.
I’ve been through, and talked to others who are going through the whole “ I need to know which so called flaws are due to my condition and which are just me.” I thought I only deserved help or accommodations or acceptance of certain traits that were caused by my being autistic. I thought I still had to fix the rest of them myself. There was no question of just being accepted or even accepting myself for who I am.
I am now learning that almost every so called flaw or failure or thing I’ve been shamed for is actually related to my being autistic. And anything else is just me.
People need to be far more accepting and understanding and accommodating of difference. Life is way more fun that way!!
I really feel this way sometimes. It's just never enough and sometimes it never can be enough.
I can totally relate ... just realised that too. Wondering how my life, and relationships would have unfolded. On a side note, I do understand that "me" is my whole experience, with autism not without it. And people who actually put up with me have something special I can really appreciate.
Wish the others, who couldn't (and I understand) would know, though....
I'm just starting to realise that far from being the weak willed, lazy and broken person I thought I was I've actually faced and overcome mountains that allistic people never have to deal with to achieve the things I have ...
I was just diagnosed in August at 41. Ive learnt more from your channel than from psychologists....thank you 💖
Yeah, I got diagnosed last year aged 37 and I've find it really beneficial to hear the first hand experiences of other autistic adults like on this channel to help understand both autism and myself better.
Same here! Therapists don't know what lived experience can teach you. I trust Autistic people more than mental health therapists. We aren't broken, just different.
@@BeingAutistic as a psychologist, I'd just like to say...there are quite a few of us who look at the whole person and we think in system ways. While it takes time to find the best fit for you, it is possible. We do see people in very real and tangible ways. 🤗
I was diagnosed at 41 as well 12 months ago
@@Dr.K.Harris "we think in system ways" - that's a really strange way to use the word "system", which is a noun. That's like me saying a drive to work in car ways.
I sometimes feared I was a narcissist because of my obsession with how others perceive me. I take masking to another level. I have never intended or wanted to be like that, as that isn't authentic. Trauma and abuse taught me from an early age that masking is essential. I am diagnosed with bipolar disorder, that diagnosis is definitely correct. I now believe that the stress of masking all my life fed into the manifestation of bipolar disorder. I have struggled with communication throughout my life. Often my internal voice vanishes to the point I can't even talk to myself, and I often struggle to process my own thoughts and feelings. I have a justified fear that if I stim in front of others or act weird I will be deemed mentally ill, which could have very serious ramifications for me!!!!! However I feel so hopeful and positive right now!! I'm starting to understand myself better and can feel a powerful transformation taking place.
For decades I was wrongly diagnosed, but the glove never quite fitted. Since discovering the personality characteristics of Asperger’s it’s a perfect fit, and finally my entire life makes sense. Though I’m self diagnosed, I spoke with my family doctor who, to my surprise, actually heard me, and has put me forward for a diagnosis. The importance to me being, correct future healthcare and support. But there’s another very important aspect. Being as autism is hereditary it means my children, grandchildren, and future generations will inherit autism too.
Already, as a family, we are recognising autistic traits in each other and the children and we’re making adjustments as we explore the best way to move forward whilst arming ourselves with tools of knowledge. The hope is that the suffering will be minimised because of this applied knowledge and give the young ones, and those yet to be born, the very best platform to live a better, healthier, mental-health life. We owe people like Orion, a great debt for putting himself out there to help families like mine. Kudos Sir. 🥰
❤
Your family is very lucky to benefit from your wisdom and consideration 💕👏
Hi Orion,
I'm 77, & your TH-cam videos have finally confirmed my suspicions that I am autistic. I've navigated this completely alone all these years. I cannot seek help from the medical profession because I refuse to suffer a 3rd medical bankruptcy. My family cannot be supportive. I've got to seek helpful information online. Thank you for being there! Sincerely, LTB
I support you. Hug
This is literally how my story is. Misdiagnosed w bipolar. Then BPD. Then my closest group of friends along with my own inner voice we all realize I’m actually autistic. I was also diagnosed w adhd when 19. I’m 36 now and I have way more compassion for myself. For years I was also told I am damaged and there’s something to be fixed. I’m actually autistic. Having my longest term friend tell me, “dude you’re autistic” was the best feeling to hear. Bc I am also adopted and did not have genetic mirrors and wondered my whole life why I didn’t fit in. Why I kept getting bullied and misunderstanding people. People telling me I’m
Too naive. I have so much more compassion for myself and now I know how to better protect my space and make better boundaries. ❤
We have such similar stories!
Most clinicians want to pin depression on me. The meds did zero. My head just work different. Im still on the way to get some kind of diagnosis but i have a lot of autistic traits. Lets see
Sounds very similar. I'm 45 and neither psychiatrists nor my family want to accept it.
I was just diagnosed at 66 I had the same feelings as your guest. Always feeling different. Embrassed at melt downs around family always running away.The hardest part is finding a psychiatrist or your own psychiatrist to believe that you have.
I just recently learned, after making this video, how to find the RIGHT doctor if you need or just want an official diagnosis.
First you want to make sure you find someone who specializes in ADULTS, not just a pediatric neuropsychologist. That was my first mistake. I received my misdiagnoses from a neuropsychiatrist who was a pediatric specialist.
Second, they really shouldn't be diagnosing you after one or two sessions. It should be over a longer period of time, like 5-7 sessions, and should include testing where you aren't just sitting in a room by yourself, but that the person assessing you should be very involved.
And third, they should also understand the overlap in adults with ADHD and autism. Tests should include MIGDAS-2, SRS-2, and DSM-5 criteria.
Lastly. they should have an understanding of the caveats of diagnosing adults on the spectrum. Ask the doctor how much experience they have with adults on the spectrum and how to make sure you aren't misdiagnosed.
I hope this helps!!
@@lolaleslie66
Thank you Leslie
Unfortunately Adult diagnosis help is in its infant stage. I'm really surprised psychiatrist aren't train in this going issue.
I just got diagnosed last week at 56. My Mother said it was a waste of NHS resources having 3 people sit and talk to me for 2 hours. That is what I've faced all my life and partly why i put off seeking a diagnosis. But now i know why i am like i am and i feel much better about everything.
Sincerely: hooray and good for you. I am really glad you feel better.
I am self-diagnosed at 51 (I passed the Aspie & AQ with flying colors-as in "undoubtedly autistic" (weird joke referring to the person mentioned...) and the CAT-Q was almost at the max. Not actually good there, but explains a lot of the anxiety, depression & self-doubt.) My mom is also skeptical. I actually figured it out looking to support my brother, who has 3 autistic children, one non-verbal. Our mom doubted that the other 2 were autistic and said he was just making excuses for their fragility & pickiness. I love my brother, and decided that 1) understanding his children was just fundamental in and of itself and 2) he and his spouse need family support, and I know my mom and the other (evil) brother would give him an awfully hard time. Like many people with late diagnosis say, it is such a great relief to know one is not broken, awful, picky, difficult, antisocial, just being who you are and it is OK!
I wish you great happiness henceforth!
2 hours! Mine took 10
I was diagnosed this year aged 47 and in one way it’s helped for me to understand myself more and my Autistic children too but in other ways it’s bad like realising the reasons I was mis treated as a child was due to the fact I was autistic and people saw that as an opportunity to take advantage of me in so many wrong ways. Also even though our country may more advanced then a lot of other countries when it comes to autism there are still a lot of people in this country that don’t get it or are embarrassed by it. Especially in my community. And family. I still feel I have to mask a lot. If I don’t I’m ridiculed for not being or acting normal.
I found out I might be autistic when my mental health nurse started seeing my kids and then started seeing me so she suggested to see the psychologist they were seeing and get tested. So that’s how I was diagnosed. When I was a child I had a huge meltdown at the age of 7 I was hospitalised for 6 months and the diagnosis was childhood schizophrenia. Just so everyone knows there is no such thing I found out years later. Then when I was in my late 30’s I had another meltdown so my husband sent me to a psychiatrist and I was diagnosed with Bpd turns out I didn’t have that either. I also have cptsd and trust me when I say cognitive therapy for that was pointless all it taught me was that I was wrong to have the feelings I have. So that’s a bit about me.
It's nice to be validated because it's so frustrating, as a 41 year-old woman, to feel like I'm not taken seriously. The only person in my life that doesn't question my self-diagnosis is my partner. And that's probably because she's lived with me long enough to know. And she's overjoyed to see me getting new tools to help myself - not just because it's helpful for her, but because she can see me loving myself more.
Honestly, I would prefer they over diagnosed autism because even if some people are misdiagnosed they're still getting access to helpful tools. I'm learning to see behaviors in myself that I can alter to help people around me. I'll probably never get it perfect, but being able to accept that I'll slip-up has filled me with more self-love than anything else ever has. But, I also sought out tools to help me. It saddens me to know that there are people who would benefit from these things but have no clue where to start.
This was such a great conversation. Thank you both, so much. 👏
"Honestly, I would prefer they over diagnosed autism because even if some people are misdiagnosed they're still getting access to helpful tools." Yes!!!
I'm happy to say that 50 isn't very old! At 64, I am pursuing an autism diagnosis.
I don't have autism, I have ADHD, but your videos are so enlightening about the struggles of being neurodivergent. I can relate. ❤
This encapsulates my experience perfectly. 55 years old....delayed emotional response to situations....diagnosed with anxiety/depression, bipolar, borderline...and told repeatedly I couldn't be on the spectrum because I could make eye contact and went to university/well-spoken...Found "Am I Autistic?" program on TH-cam and everything confirmed what I had known internally for years. Took hours of travel and time to see a fairly local psychiatrist who specializes in autism hoping for confirmation and came away with an ADHD and social anxiety diagnosis. At that point I became disgusted and have accepted that an official diagnosis of autism just won't happen any time soon...and I may lose disability benefits due to it...but I know me and my life experiences....and I can only hope things get better/easier for people who come after me.
I'm a parent autistic and I'm often selfblaming for not being a good parent and not understand enough. Also the quick changes in my child's development stresses me. I love analysing a text or an specific subject but I never learned to negotiate salary for example. At 30 I first understood how the health system worked..I didn't understand to pay tax at my car etc etc but I had master from University😂❤😪
I was diagnosed about ten years ago at 46 years old. The discussion about masking and unmasking struck home for me.
I am at a point in my life where I want to be unapologetically ME. Not the person that my spouse and family want me to be. Not the person that society wants me to be. I've been masking and masquerading as that person (or people!) for most of my life to fit in.
Now is the time for me to to unmask and let my authentic self shine for the world to see. It is time for the world to make room for mu uniqueness, not for me to conform to the world!
Thank you Orion and Leslie. Wonderful video!
Chris
Maine, USA
So, try being diagnosed at nearly 70 years old!!! The 50’s in the US was a not place to be an autistic child. I’m a survivor. I made it, barely, but I made it! I’m still here!😊
i am 67, i have recently (thanks to you), self diagnosed. i have been thinking i was not normal all of my life. had many issues with family & now i feel less 'left out'. im a new subscriber, and i can relate to so many things you talk about. Bright lights, people talking loudly, so many other things. you have helped me to recognize these things. Thank you! So very much. Since i was a young child i havent felt 'right'. easily confused, anxious, worried about how everyone perceives me. i think i may be understanding.
Same here I'm 60 and I'm sure that I am autistic also . So many things make sense now. My life has been a nightmare and I feel like it's too late now . But at least I know why now.
This has been my whole life, since I have accepted myself as "autistic or spectrum" I have started to feel tremendous relief. Thank you so much for your videos.
Nice to meet Leslie, I've been diagnosed recently, at 53 almost 54. I've been self diagnosed for two years. We need doctors and psychologist to understand better.
Agreed!! If your doctor dismisses you, keep looking until you find the right one! Believe in yourself 😁
The draining feeling being in over your head so relatable
I heard from a friend, ten years ago, that he was diagnosed with Asperger's. Since he and I have similar minds/personalities etc I wondered about myself but only five years ago a comment from a close friend prompted me to o to the doctor and trigger a diagnosis. I was quickly seen by a social worker who, after three hours of conversation, decided I should see a psychologist. Due to a backlog, then Covid, this took four years but eventually, at age 68, I was diagnosed as having ASD. This has answered so many questions and caused me to go in search of more information, hence listening here. It's too late now for so many things to have been different for me but I also contribute to studies carried out by Cambridge University in order to help those diagnosed in the future and can definitely recommend that if you have thoughts about possibly having autism then do go find out for sure.
Self diagnosed woman at 61 years old, I really do appreciate your videos and your insights. You have in so many ways, and so many times, shined an understanding light on so many of my own idiosyncrasies or experiences. Thank you for all your hard work
I’m truly enjoying your content. I’m a high masking AUDHD woman, late diagnosed at 50, mother of 4, two have ASD and three have ADHD, one is NT. I was misdiagnosed as “highly sensitive” and have multiple health issues, possible Ehlers Danlos, anxiety, depression and fibromyalgia, and that’s tip of the iceberg. I’ve learned to be such an effective masker it’s been a journey finding myself. I’m thankful that my kids won’t have to suffer the bullying, to fail because they hit a wall when they run out of dopamine. Anyways, it’s freeing to not feel like the alien, the weirdo outsider.
Autism is NOT a disorder. We are highly sensitive and work differently. This planet is extremely traumatizing to sensitive humans. What a relief to listen to others that have similar experiences. At 52, what an absolute relief to figure this out. We relate in ways that isn't understandable to many. Realize who and what we are , then go beyond, there's so much more, our abilities are available to us naturally. We may not run well in "The System" but we're exceptional. (We don't need to use words to communicate) The freakouts are self preservation/defense mechanism IMO. Could be just me. School was the worst🤪 Take care of yourselves, you're all so worth it, especially when you don't believe you are but, you absolutetly are!!💜💜💜
I thought about the situational mutism in some, as a plausible cause for considering it a disorder for them, but that may one day be considered more of a trait of other diagnoses, such as trauma. So you’re probably right-other traits seem to really be okay, so long as they learn to manage all their needs, in addition to those needs being respected by others.
But alas, as society is pretty rigidly designed around neurotypicals, it has to be classified as a disorder to get the necessary accommodations in many places, because people for some reason learn to demand a doctor’s note before they act (begrudgingly) courteous.
...its disorder in NT society. Cats use Partial-OBE CPTSD to feel things in advance. it arrived this morning.
I was diagnosed a couple weeks ago at 49, This video was really great. Being a woman and feeling like everyone around you is doing a dance but you don’t know the steps has been exhausting. I’m grateful for my diagnosis because somehow it makes me feel ok that I’m doing my own dance, I might step on some toes occasionally but at least I’m not ashamed and trying to do something I simply can’t do.
Agree!!!
Two of the things you said really resonate with me. The feeling that I'm just keeping my head above water, and the feeling that I never really belong. The only place I ever felt I really belonged was a couple of summers when I was in college that I worked at a small tourist site with a crew of about 65 people. We were about 30 miles from the closest town, not allowed to have cars, and had every 10th day off. We all became very close and some of the people I worked with there are still among my closest friends 50 years later. We had to learn to accept each other, and everybody was part of the team. Even there, one of the department managers took a dislike to me for reasons I've never understood and had me transferred to a different job with a different manager.
No diagnoses but pretty confident I am at 62 yrs old. No friends. Children falvored all alcoholic pediphile father. I have no idea where to go from here. Can't afford diagnoses. And I am the meltdown queen. I do best in silence. Thanks for your videos.
It's a very big nut lol.
Yes under or over estimated exactly 💯
Diagnosed @ 58 I had no clue 6 month prior.
Loud voice I didn't know about.
"It might never happen" grrrrrrr
You are so on point Orion.
I think diagnosis stops you bashing yourself up for your perceived mistakes.
I stayed away from equal peers...females my own age.
My life makes sense now.
Great interview thankyou both.
So helpful. I’m still deciding if it would be helpful to seek a diagnosis as a 55 yo woman. My 36yo son just got his after his own son at 3 was diagnosed. What’s strange is that all our family’s ‘weirdness’ has been mostly celebrated, and I tend to gaslight my struggles as I see a lot of my family struggle with the same stuff, assuming ‘we all do this, get over it’. Anyway, thank you for a very enlightening show, I appreciate your guest as well.
I was diagnosed at age 53. Go for it.
What a great analogy? Left handed person in a right handed world is one I never thought of.
Great video. Thanks for telling her story. I got what you were both saying when you're saying that you don't know how to be 50 or be a husband or dad. I am 55 and I just keep telling myself I don't feel like an adult and I just don't know how to grow up. Your channel is amazing. Thank you for the work that you do for us autistic people
I have been diagnosed with every single thing that Leslie was diagnosed with. I feel fed up and frustrated with the mental health system. I am on disability. My case manager used to do autism assessments. She suggested that I am autistic. I watched 500+ autism videos and I agree I am autistic. I am getting diagnosed March 2. I am 47. I hope my PTSD doesn't mask my autism. Because I feel like this is my last chance. I am overwhelmed doing nothing.
I hope you got a diagnosis and that it has been beneficial so far!! ❤
I'm also a nurse, have only recently been diagnosed with ADHD, and suspect that I might have autism. I worked on a medical unit for almost two years and had a meltdown in the break room due to overwhelm. I loved working in the NICU until I got in a unit that wouldn't allow my compensatory mechanisms to focus while working. I wasn't diagnosed for another 4 months, so I wasn't receiving accommodations and couldn't fight them firing me. I currently work in a clinic and it's been a decent fit.
I looked for a group that specialized in adult diagnosis and diagnosis of adult women, and I DID do testing and got a diagnosos of autism at the age of 49. I highly recommend advocating for yourself and getting to the right doctor because validation by a professional is so reassuring! I feel solid now, not like I'm standing on a pile of shaky maybes
It was really important for me to get a diagnosis (only very newly diagnosed, btw). I’m 42. My self-esteem is shot after a lifetime of always feeling different, of always ‘failing’ in ways both small and life-altering (for myself and others), which has led to what I now know as a ‘no going back’ burnout. I’m tired (!!!) and I have very little self-trust at this point, so I needed that external, professional validation. It shouldn’t have to come to this, but it is just the way I feel. I have put myself into debt just to be diagnosed, which also should not have to happen. My story is rife with dismissal and misdiagnosis, as is common. I am only just beginning to unravel it all and although I am somewhat relieved to ‘know’, I’m also really scared because I’m still taking it in. All the best to everyone struggling right now. Thanks, Orion, and Leslie.
This was a great video. I’m a 22yo man, but I relate to Leslie a lot. Especially having people tell you to smile, and not knowing how to be an adult. I especially related to her saying she melted down after her high school graduation. I was sitting in my dad’s truck after the ceremony, and he was telling me how proud he was of me. I couldn’t show any emotion, and I could barely speak because of how overwhelmed I was by the ceremony.
I didn't even want to go to my graduation because of what you said: I was overwhelmed! I'm glad you could relate and know you're not alone!
I was just diagnosed last week at 57. I've had several diagnoses throughout my life as well. I'm still trying to take it all in. I really appreciate the information on your channel. It has helped a lot.
Congrats! I was diagnosed last year at 55 and it's been one of the best things that ever happened to me. My whole life makes makes much more sense.
@Lou Krmr Good Luck!
Learning about my son's Autism is when the light came on for me.
Thank you for filming this video, and thank you Leslie!!
I am choked up….I felt so emotional listening to you because your experiences mirror my 21 yo daughter’s path, and the challenges she (and us as her family) has endured. She just received a diagnosis of ASD from a professional out of Somerset, NJ after a lifetime of misdiagnosis and failed talk therapists giving no practical advice on how to move forward in life - and they would actually deny anything neurological. The last psychologist flat out told me my daughter did not need an ASD eval
but that her issue was anxiety (and it was caused by us as her parents). She saw my daughter’s executive functioning deficits as me just helicopter parenting my daughter and not letting her grow up. Living in NJ ourselves (currently living in Hunterdon county, growing up in Somerset county)…what you describe as stigmas and your opinion/experience of saying Asperger’s vs Autism - so agree with you!
I’m just so moved by this conversation between you and Orion!❤
😊
My whole life people have been judging me as difficult, uncooperative, and demanding. I was diagnosed at age 57 with autism. I would try to stand up for myself and get put down. People are cruel.
🫂Hugs to you.
@@lolaleslie66 Thank you!
55. Story of My Life. Sorry this is happening to you
I don’t think I ever blamed my parents for my problems not knowing how to communicate with other kids. Although I did occasionally think I hadn’t learned these things that all the other kids seemed to know because my mom wasn’t around and maybe only moms taught that stuff. I definitely blamed my lack of social skills on not going to nursery when I was little. I saw the other kids interacting and knowing how to ask to join in or be someone’s friend and I just sat on the step by myself waiting for someone to ask me to join in at primary school and that rarely happened. I thought everyone else was taught that at nursery and I missed that because I didn’t go to nursery.
With my kids I made sure to tell them what to say and that they need to be the ones to ask someone to be their friend (I know I felt uncomfortable asking that as I didn’t know what to say) and remind them to ask what the other kid’s name is and interests are etc. I have also told them to look out for kids on their own and ask them to play. Although I don’t know if I’m simply teaching my kids a way of masking. Sometimes I get the impression that my kids kinda collect surface level friendships a bit like Pokémon. I guess because they say how many friends they made at soft play etc, but they are unlikely to see those friends again. They are still young so I don’t really know how they will get on socially when they are older, but I do hope that they won’t have the same challenges as me.
One of my main problems is not knowing the rules for things. Especially if I have heard part of a rule, but can’t remember it. It still happens now. At uni we need to book rehearsal rooms 2 days in advance and make sure we don’t message after work hours or at weekends with a request. This gets quite difficult to navigate. At least with email you can use things like mail butler to send an email at the appropriate time but you can’t with the uni booking system. I’m in my 2nd year now and I only found out recently that there are meeting rooms which you can book straight away on the same day if they are available just by giving the security guard your pass to swap for the keycard and you can just go into the lecture theatre to practice if it is not being used without needing a pass. Little things like that seem to add up for me.
I remember having anxiety in art class in secondary school about similar things. Namely missing what the teacher said about which cupboard to collect the paints from etc and where stuff needs to put back. Those types of things cause me major anxiety, but I’m wondering whether it actually is connected to autism. Another thing that I used to struggle with was booking appointments. I didn’t know how to ask or word it. I guess I was afraid to use the word appointment because I associated that with the word to use when booking a doctor’s appointment, but I didn’t know if it was the right word to use to book a hairdresser appointment for example. Sometimes I would say can I book a time etc and that sounded weird too and I didn’t know how to connect when are you free to the question. I was worried that the person would think I was asking for them to do my hair for free etc 😂. I think I have since discovered when are you available and what is your availability like but booking appointments still causes me major an anxiety.
I've just been diagnosed with Autism Spectrum Disorder. It was such a relief but at the same time I also felt angry. The diagnosis has explained so much about my life and struggles. School and work have been such a battle for me and now I feel I've been left to figure this out on my own. Thank God for channels like yours, they are life savers! I have got by in life on my own but really I've always needed support especially in the work place. I'm 48 years old!😕
In late teens and throughout my twenties, I was in a group of friends that really enjoyed parties, raves, concerts, places where music is very loud. And since I had no clue I might be autistic back then, it puzzled and weighed on me how just out of place I felt there. And even worse, I love music, it's a passion of mine, I love a bunch of different genres, I collect music, read about it, etc. So there was always a double disconnect for me. On the one hand, I was really cut from the social experience because the noise and lights and constant unwanted physical contacts made it impossible for me to communicate. On the other hand, I was enjoying the music, even if I would have rather isolated myself in a corner to fully enjoy it, without the awkwardness of standing there unable to communicate with my friends. On top of it, I hate dancing and I couldn't even get away with it by "dancing like nobody's watching" as they say. I really wish I could have known why I had those difficulties back then, instead of feeling guilty about being antisocial and just leaving the place like a thief when I felt both sensory overload and boredom.
Leslie brought up a good point about ADHD and women. I spent the last 30 years getting treatment for anxiety and depression, but I am still dealing with the same thing as I was when I was 22. I'm not feeling any better, but it has only been four weeks of medication. I am still not sure that ADHD is the complete diagnosis. It's such a challenge. I don't want to Dr. Google myself into self-pathologising, but I also don't want to ignore the elephant in the room and that's the frequent meltdowns.
Don't be afraid to be Dr. Google! It's practically a rule in the U.S. that you self diagnose, then go to a professional for confirmation.
Autism in adults has been ignored (and denied, and faulted) for centuries (at least), particularly for women. It's not a glamorous field of study to begin with, and psychiatry, psychology, and counseling have always lagged far behind the medical professions, because there was nothing empirical to study, or as one instructor put it, they're really "...more of an art than a science." It's a very good idea to prepare to advocate for yourself.
@@1Listen2Learn They only started recognizing autism in the last century. I believe it has existed for centuries but nobody recognized it.
I’m 31, but this has been my experience. Anxiety/depression diagnosis, along with OCD & anorexia. Finally got diagnosed with ADHD last year at 30 and I felt like maybe I was figuring it out!! Just to find that something else is missing. I found someone who posted about their AuDHD experience & never have I related so much in my life!! The meltdowns are real. And I’m remembering having these my whole life…. Aside from the periods of time where I mostly shutdown instead. Those were dark times tbh.
It is hard when you are older especially as a woman who looks “normal” for people to understand why you would need a diagnosis or how you would benefit. At 51 I might look like I am normal but on the inside I’m scared, lonely , confused ,anxious often depressed and really not doing very well behind the mask. I don’t want to live any more of my life like this ..I don’t enjoy life it’s hard work and I only get through by keeping everything hidden and that’s a feeling I don’t even have a word for …a diagnosis I hope will help find both a community I fit in and a some kind of happiness and peace in my remaining years
I'm now 54 and came out of the closet as gay and an activist in the middle of the AIDS crisis. The USA has come SO FAR (and yet not) regarding LGBTIQ+ and I seldom have the same stereotype issues now that came up often back then. I have the same resistance-nay, MUCH stronger resistance-to my Aspergers/Autism because I don't fit the stereotypes AND I'm not a kid. _I_ know how well this diagnosis fits. No other diagnosis I've received explains so many social issues I've had, especially anxiety paralysis in group situations. And like Orion, I had religious and narcissist parenting, which is too much a quagmire for this particular video page. Thanks for this video. Validation is important in the face of incredulity, bigotry, and denial.
I have been struggling with the ASD diagnosis because I have felt like I am just using it as an excuse for my meltdowns. But I am starting to realize that they are real and in many cases uncontrollable (thank you Olivia Hops!). It's difficult to shift your whole idea of yourself at the age of 61.
im still waiting for my diagnosis, been holding on by my fingernails my whole life not knowing why i feel so stupid yet smarter than the people around me. You have been so helpful in helping me find out who i am. Thank you
When I got diagnosed it felt like the worse day in my life. I made the mistake of letting my family know I was going for an assessment. I went for a year, and in that year my family were very dismissive of me being potentially autistic, which really impacted me. When I got the confirmation I was happy for five minutes, then went down into a deep spiral. The first year after was horrendous, and I have basically been just barely functioning for the past four years after that.
"You know you'd be a lot prettier if you smiled." ... ... OMG, Yesssssssssssssss!!!!!!!!!!!!!!!!! I hate that so freaking much. I have always felt that it is awfully bold of someone to come up to me (strangers mind you ...) and tell me how I'm supposed to feel or express those feelings. Granted now that I know that I'm autistic, that lack of smiling is a symptom. But even before, how do you know my dog didn't die that day? How do you that I didn't just get fired from work? Why is it their place to impose their beliefs of how they want me to act on a complete stranger?? I mean really ... really, are you kidding me?? Leslie, you nailed it! When you said that, I almost jumped out of my chair! 😂
Just came across this. Thank you for having Leslie Reyes on the show. Alot of her experiences were mine as well. 45 and self diagnosed myself, my 25 yo daughter, my mother, uncle, aunt, grandmother and her twin, and probably my great grandfather. A family mystery solved as soon as I realized! Its been a crazy ride! Thank you for continuing to share your experiences. ❤
I am listening to this, recently self diagnosed, firstly, I have always been extremely self aware, so given the pieces that I already knew, (but living like an over sensitive alien on a foreign planet, letting people close to me walk all over me, ) and having the word Autism (past concept small boy unable to speak rocking ) the word Autism meant nothing to me (so why would it now to others?) So having a piece of paper to “say I am” is equally meaningless to me (56 yrs) but the outstanding thing is the word Autism (me) and ADHD (hubby) now opens my mind, thanks to Prof Tony Attwood “could it be Asperger’s “ leading me to Orion, Yo Samdy Sam Autism Hang out.. Olivia, to the whole road map of the “what” (neurodiversity not “life” challenges) the why “just because!” And the “how” self defence boundaries (ear pods!) quiet days ..saying NO to walking through a field of Cows in the FOG! (ADHD Hubby.. risk taker 😂) it all makes perfect sense! My cure is the validation to be my OWN self advocate! The weirdest thing is, calmness, (and ear loops) has given me more memory, more capacity, more tolerance, more brain power to plot my next move.. thanks for your utter positivity Orion 👋👋👋 edited to add, there are people in my life who I KNOW are neurodiverse, but at the moment, they are happy to “just shout louder!” You know? That will get them understood, right? They are not (to my knowledge ) self aware, so.. they are just not yet open to the teaching that is becoming available.. that’s why these channels are just SO very helpful 💐
Love these chats with other adults! 💞 Thank you both!
You're welcome!
Good video, thanks to both of you.
I was diagnosed in October 2022 at the age of 44. It would have been good to have understood why I was struggling, BUT, if I'd been diagnosed at, say, 5 years old, I would have been pigeonholed and wouldn't have experienced some of the things I've experienced. My life would have been easier but I'd probably have had fewer great memories to recall. I expect my son to be diagnosed in the next year or so and hopefully, we will be supported to make sure he is able to do whatever he wants with this life.
I can relate to EVERYTHING Leslie said! Especially feeling like you're an impostor at being an adult. I am 50 just diagnosed 3 months ago.
I hear you and see you!!!!
@@lolaleslie66 Thank you! 🙂
I have not been diagnosed. This conversation really hit home. I am 45 and thinking I need to start my journey. I just found your channel today and I have identified with the videos I have watched. Thank you for sharing your journey and making this content.
I am going to say something and please take it as a compliment! You remind me of the Wiggles back in the day. But like in an adult way. There's just this air of friendliness and genuine enthusiasm to connect, in this case the neurotypical to the neurodivergant, and your ideas are always presented clearly and directly, almost knowing the hurdles that might come in a two-way conversation about this and addressing them as you go. It's great. Couple that with the Aussie accent and... well I hope you take it positively. I liked the way the Wiggles (yeah, I liked 'em, watched 'em with the kids) never seemed to talk down to the kids. You're really helping me know my autistic kids and likely my autistic self and I thank you!
Thank you Both for this great episode.. Diagnosed at 52 recently and agree with and recognised everything you’ve discussed. Important people find the right person to diagnose.. After a life as you were describing finally understanding what’s been the cause has been a great thing, yes, there’s some grief over the past and some work to do but overall I feel much more positive about the future… Particularly like references to not knowing how to ‘be your age’ totally get that… It’s not like when people say they still feel like they’re 18 but much more as you describe ’imposter syndrome’.. Watched lots of your episodes Orion and shared with those close to me, they have been a great help and saved me energy when I’m not up too or don’t have the energy or don’t know enough yet to describe as eloquently as you. So massive thank you 🙏🏼
Thank you so much , I learn't from this channel the "why's" in my mind of what I have experienced with myself and with others. Understanding oneself and others is acceptance.
Never (42yo) been properly diagnosed, here in Bulgaria autistic is equal to be in a dysfunctional state since very young age. I got into self testing through a friend neurobiologist who is studying such kids. Lack of awareness and acceptance for people like us who are functional but unusual is beyond any belive. Thank you so much for sharing.
I could hear her in a Loving Way! I had been masking, adjusting for the sake of fitting in & being mindful of others that I forgot about myself. It was exhausting! My son, who is now a Husband & Father, as a teen used to tell me to "act your age!" I still need reminders from time-to-time to accept myself as well as others! I too only have 1 volume, LOUD! Thank-You!
I started doing research about autism when my daughter 4y/o was diagnosed. I was floored by how many of the traits described myself. Its because of your channel that I have at 38 y/o have just started my journey for a diagnosis. Thank you for your passion, I am another mark in your win column
I relate to so much of your experiences as I am an older(71)woman who has been told the same things about my feelings and motivations. I am undiagnosed but surely on the spectrum. I realized this a year ago when I had my aha moment watching videos about Autism. My Grand daughter was diagnosed with various mental problems and I kept telling her mother that she was just like I was as a child. She was finally diagnosed as having Asperger's Syndrome and the mental labels dropped. I still didn't get it until I started to watch videos about it to gain some insight about her ."condition.
Wow. I'm about six videos in and at nearly 70, I have found my tribe. A relief, indeed! Thank you both, great interview.
Thanks so much for this session. I'm recently diagnosed at 55. And though there is so much great ASD stuff available online in general, it sometimes feels there is a bit of a lack of late diagnosis experience. So this is very welcome.
SO glad I have found this channel and watched this video. I did not realize my browsing algorithm would present me with something I truly needed to learn, thank you, Ms. Reyes, for mentioning your similar experience. I am 57 with a 16 year old son, coming to terms with my own autistic traits so late (but finally!!) and trying to navigate my son through his. It is a tremendous amount of energy we expend, he and I, just to get through our days, but there are wonderful bright sides to who we are. We don't appreciate that enough about ourselves, but watching others who experience what we do is a tremendous help. Thankyou to both of you!
It truly is a Great and informative channel
Thanks for making this video. It’s always so helpful to hear other people’s experiences of late diagnosis because it makes me feel that I’m not totally alone. I can identify with so much that you say here. I think you’re very brave to be so open and honest.
Society would be so much the poorer without those of us with ASD. So many doctors are autistic. Many University professors are autistic. (No surprises there). All of the technology that we rely on are designed by engineers who are so frequently autistic. So ‘curing’ autism would cost our whole society an awful lot.
I think you’re amazing and your channel is really valuable and a real asset.
I’m 43 and a year diagnosed with asd autism
I struggle as live with my mum who had a stroke back in 2019 I don’t mean to get frustrated with her but sometimes I do I am enjoying your videos
I dont react either. I never panic in an emergency. It freaks people out. This totally has a positive side. I can deal with bad situations better.
Just found this channel and it is becoming so helpful. I'm sure most people would meet folks like you and never consider "autism" as a label. So interesting to see this side of things as I explore this area. Her last comment about "feeling alone" really hit home. I am not diagnosed, but so much is starting to click and open up just by listening.
Orion, you're the best! Thank you so much for turning on subtitles. I get the "delayed reaction" to big things too. I initially act as if nothing has happened, which annoys people, until the thing registers with me several days later - and then it hits me big and I get a huge wave of emotions. Also, it's sad that we have been taught to see ourselves as toxic unwanted angry people. I fight this in myself everyday - it's my own ingrained internal ableism. Finally, some of the outdated language in the video made me cringe, but I get that each country has its own practices and language around Autism.
What is "ableism" ?
Thank you Orion for putting this out there on TH-cam and having Leslie on the show. You really have a gift for interviewing. And thank you Leslie for your wise insight and your honesty in sharing your thoughts and experiences with us. I am in the process as you mentioned, about unmasking. I'm trying to find out where I am masking and trying to unmask, if you know what I mean. I'm a 63 year old woman and I haven't been able to get an official diagnosis here in the US yet. I too have been to different therapists and have been misdiagnosed with several different issues. Thanks for the encouragement about going with your feelings in seeking out someone who really understands autism in the adult. I will be doing that for sure because I really need that kind of help with my meltdowns etc. I was also part of your livestream Orion, and I really enjoyed talking with the other people. So keep up the good work and I hope to share with you some good news soon.
💛
Trying to get a diagnosis has been very traumatic for me. Every time I would try to start treatment I would get some half assed diagnosis (like unspecified mood disorder, unknown mental health disorder, cluster B personality traits, unknown depressive disorder) and bipolar disorder, paranoid personality disorder, dependant personality disorder, intermittent explosive disorder.. I would get so much worse every time I started treatment, even if it was just therapy. I thought things would get better since I learned I have a bunch of ASD and ADHD symptoms/ traits but most professionals assume I am lying to stay on disability (and to get Adderall to get high) because I tell them that I was first diagnosed with bipolar disorder and recently have been told that I do not have that. I didn't mention that I have been on a mission to get "undiagnosed" ( I don't know what else to call it haha) so, from what I understand, they think I am making stuff up to be able to continue to get disability benefits. I wish I could lie. I just don't understand why it's so wrong of me to seek an ASD diagnosis, especially since treatment for everything else made me feel worse. Plus my parents were neglectful and mad me feel bad instead of mentioning my problems to my doctor, and step dad even yelled at my doctor when they talked to my parents about me possiblity having ADHD. I've tried every pill that my insurance would cover and different types of therapy. I did recently get diagnosed with ADHD and medication for that is extremely helpful.
Its difficult for me to explain/ feel/ understand my emotions so I think that's another reason a couple psychologists think I am lying. There are like no mental health professionals or diagnostic tests for adults for ASD or ADHD in Americ and we get tested like we are children. It really sucks. I'm 32, I'm not stupid and I have learned a lot, but that doesn't mean that I don't struggle. And it hurts that I get diagnosed with personality disorders because I am not capable of manipulation and all that and get accused of projecting my paranoid type feelings on other people since I have wronged so many people, which isn't what happened. For awhile I was convinced I was narcissistic.
For me, getting just an accurate diagnosis, ASD or not, at the least it would give me so much more confidence and to be able to be more comfortable and accept myself. Just getting the casual diagnosis, I had more confidence to I get back in touch with someone I had a crush on since I was 15 (I stopped talking to him when I was about 21 because I thought I would feel more normal the older I got and I didn't ) and we are getting married soon 😊.
I think getting an accurate diagnosis is extremely important but dont torture yourself trying to get one. AND I cannot stress this enough, do NOT keep seeing a counselor you do not like or that gives you bad vibes.
I am very grateful for you an other TH-camr's that make content on ASD. You guys are freaking lifesavers. I dont know where I would be right now if it wasn't for you guys.
I feel every bit of this but I'm scared to take the next step. Thanks for you videos.
I honestly keep thinking that my autism became more prevalent the more independent I’ve become. The more I notice atypical adults and how they react and behave, the more I’m aware of how different I am.
I got a degree, I work a full time job, etc. But there’s been some things I’ve noticed about myself that doesn’t quite add up.
Before you’re an adult, your silly behavior and interests (hyperfixations) are generally accepted. Then you have to “grow up” and you don’t have that same support net or grace of others that was so prevalent growing up.
That's exactly how i feel! Thanks for this video! I'm having a hard time asking for a diagnosis (i must be nuts, right?!) and this sort of video gives me courage. Also... This is the first time I've heard about the voice issue and the time and money management difficulties. I'm relatively new to this, but so far everyone was focusing on speech and organization and stuff like that. I'm mentally exhausted atm, so i can't say exactly what i mean... But i didn't identify so much with that. It fit but i was like "well yeah, but i mean, I'm managing... would i call it impairment?" and so on. My psy calls it arborescent thinking, where i take one affirmation/though and try to look at it from every possible angle... That's just how my brain works... So i find it very difficult to say "yes, that's definitely true for me". I usually am "well, yes, but not exactly every time, depends on circumstances, what exactly do you mean by social interaction" etc etc. But time, money and modulating my voice, that's spot on. I can't count the number of times people are saying i either talk too loud or too softly! And of course anyone talking loudly will drive me nuts. Time is a nebulous thing, i have zero capability of assessing how long something will take me, i practically never can tell how long ago something was, I'm sometimes on the wrong day in my head and can't get back to normal no matter how much I'm told "no, today is not Thursday, it's Wednesday"... And money goes through cycles... Like now I'll spend like crazy, then go "omg, i'm gonna end up on the street, from tomorrow i'm not spending anything anymore" and try and do that for a bit, then i'll explode... And the constant fomo inducing advertising and email bombardment is hell on my breaks. I see some art supplies and it's my special interest and i will try to reason with myself that i already have enough, that i don't have time to use them all, that it will be there in 6 months if i actually need to use it and so on. But it eventually all goes down the drain of "oooh but i am sooo interested in this and i just got a new course (i probably never jave time to actually practice) and look it's on sale, they say the price will go up and never be this low again" yada yada yada and i'll crack! Ok, it's also because I'm feeling like an alien and need to compensate somehow. But yeah... It's crazy...
Whew! What a relief. I'm 60. Not showing emotions in the moment and the left hand analogy left me with no doubt about my autism. What I can't figure out is how an official diagnosis would help me
I'm not formally diagnosed but I am working on it..... but I have been watching videos and learning whatever I can and I was misdiagnosed as bipolar and anxiety etc so I can definitely relate to what you say. It took me literally losing everything I valued including my home for me to discover that I am autistic not defective! I just wanted to say thank you so much for your videos! I'm slowly seeing that I am not always the problem..... and that I am not a complete crappy person!
These videos are very very helpful! I, a 70 year old female in great health, made a 54 year old male friend (plutonic) through our Christian faith, and we spent a year building an awesome, totally paid for, barndeminium together. Through that year, I came to realize my friend thinks differently than most folks, and melt downs occur when I least expect it. His 26 year old son moved in for multiple months. The son had 5 diagnosis from an early age including autism and aspergers, ADHD. Once I watched these videos I truly understood the difficulty my 54 year friend has lived with all his life. He is such a wonderful man, and we have a chance to be friends and help each other. Your videos really help me learn what not to do and what to do.
Wow I ask the same question, im 58 and still feel like a 12 year old mentally 😬😵💫
I get it!
I watched this video right before I went to the clinic, I just returned from the first part of my evaluation. It was... Much better than I excepted. I broke to tears right at the start because of how stressed I was, but otherwise it went smoothly. I'm glad I made myself actually go there.
Very resonant and healing. Thank you. Struggling with late diagnosis, after struggling forever before diagnosis, and Leslie and Orion were great at explaining the late diagnosed experience.
Wow spot on; something on TH-cam clicked and it started sending me… so yours was the first youtube I watched this fall. WOW !!! so I’m not an alien. 62 but at this age a assessment won’t be needed for my piece of mind but I will be discovering all the different things I am.
This channel has been in my suggestions recently and seeing someone who "looks like me" being interviewed about later-in-life diagnosis was a powerful draw. Thanks, Leslie, for sharing your story and your feelings about it all. Your story resonates with my journey on so many levels. Shout out from one Cali girl to another!! It's been really empowering to find an Autism diagnosis later in life and this community. Thanks Orion for using your platform to be an ally for other Autistic folks, the passion to help others shines through. Subbed!
Dx’d at 48, and it was worth it to finally have real tangible confirmation that I wasn’t going to ever just be normal, and the incredibly draining constant struggle to mask was just that. Even a late diagnosis can be very helpful to recontextualize the past, and to better move towards a more livable now and future. It can also be a good tool to force a workplace to make accommodations, as it is a recognized disability under the US disability laws, regardless of how high functioning or well masked you may be.
Guys this is so so beautiful on all levels. Wow
Thank you both for this great discussion! I find so much comfort in the relatable topics that you’ve covered. Struggling to get a correct diagnosis has been hell. I hope I can use these points as the beginning to whatever is really going on. ❤️
I just got diagnosed at 62. A whole lifetime to look back over and re-assess. I wasn't just a bad tempered, 'dramatic' person, I was melting down under major stress again and again. It's illuminating, but emotionally draining
Hope you see this. Bingo, so many incidents over and over. I don’t even remember them all, because I blocked them because they’re so hurtful. Like they happened to someone else.
@@GhostofMrsMuir1443 it lost me my kids- my son cut me off for being too 'dramatic' my daughters accuse me of saying or doing [or implying] things that make no sense to me. It hurts. AT least I can make more sense of their accusations now
I was diagnosed in my mid-50's and I'm now 65. And I'm still trying to figure out what was a mask and what was really me, and am I still masking? It became such a part of me. For example, I know that I was emulating a guy in 7th grade who was popular and good-looking, but I didn't even realize it.
I divorced 20 years ago when I figured out she was just taking advantage of me and abusing me because of my place on the spectrum that neither of us knew about. Some hard talks with a counselor made me realize I was molding myself around what I thought she wanted or expected, because I thought that was normal. But I got to a place where I didn't recognize myself and felt I had no way out of the hole I had dug. So when I became more assertive after realizing what I had been doing, she didn't like it at all, since she had been controlling me without my realizing it. That was the beginning of my unmasking before I even knew i was masking or what it even was or why I was doing it. When I found out I had Asperger's (what it was called when I was diagnosed) EVERYTHING started to make sense, and even now, when I remember something in the past, I recognize how being on the spectrum affected the outcome.
I can top most of these stories for time "Lost in Spaciness". While checking out my grandson's behavioral issues online I decided to take an autism test as he would answer the questions as a five year old. Oops, that sounds like me, a dozen tests later, 1 paid for, and concluding with the Aspie Quiz, we determined that I had a definite place on the spectrum five days before my 71st birthday. What followed were the typical feelings of relief that something explained my journey followed by sadness at all the damage caused by poor communication and shutdowns. I am glad for all of the communities where people can gain some affirmation. I have known of my place here for ten months now. Thank you from a kid from Syracuse in the U of SA.
A wonderfully balanced and sensible conversation on labels, choice of terms and ownership over such - very well handled by both of you. Thank you 🙏🙏
I was diagnosed at 50 as well. That was10 years ago. I had a grief therapist whose son was on the spectrum, so she recognized it in my 13 year old son and me. Then I saw it in my younger daughter. Huge difference in their lives to have high school prepared to have certain services for them.
I'm more in the close to suicide for much of my life.
Thank you so much Orion and yes I have been talking with family about this .
I was looking forward to this interview. Thank you.
I was diagnosed when I was 33 and I agree with Leslie in that I would rather say Aspergers than just Autistic. If I say I am Autistic there is a huge spectrum that I can fall into ranging from being completely nonverbal to being able to mask well enough to make most people think you are normal. However if I tell someone I have Aspergers then it is a more narrow subset of Autism and they will know much more what to expect and that I am going to be verbal and that I am on the higher functioning end of the spectrum I may say or do some odd things but they will be able to communicate and interact with me in a more "normal" way which can put the general public more at ease. I remember going to my very first Autism group and one of my worries (which turned out to be unfounded) is that half the people there might not be verbal or much lower functioning and that I wouldn't get much help from the group. And even in a professional setting, when I am having a hard time in my life and having a harder time masking around clients, I can let them know ahead of time that I have Aspergers and so if I do or say something odd please ignore it. Whereas after telling a few clients ahead of time that I had Autism and after meeting them they let me know that they were worried when they heard I was Autistic because they really weren't sure what to expect which has never happened when I have told clients I had Aspergers. I do feel that there is a very good reason to still use the term Aspergers Syndrome because the public isn't as educated as we are about this sort of thing and the purpose of words is to communicate and if communication is made worse by some people telling others that a word is no longer allowed even though it better describes something then I fell that is wrong. In a clinical setting, sure oulaw the term Aspergers. But in real life it really does have its uses.
I am also late diagnosed, at age 50. What I found fascinating with this discussion is how much more I relate to Orion's experience (based on a lot of his past videos), than Leslie's. The reason I say this is because I was female presenting as a child and came out as transgender only a few years ago. So, despite being seen as a girl/woman for most of my life, my autism experience is still closer to Orion's, even in childhood. In some ways, that reaffirms my gender incongruence diagnosis. (I find stuff like that fascinating).
Would you mind expanding on this? I find this very interesting and more importantly should be moted
@@ars6187 What should I expand on?