The Hidden Costs of Late Autism Diagnosis
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- Опубликовано: 12 ноя 2024
- Diagnosed as autistic late in life and wondering what's next? Or undiagnosed but trying to improve life with your neurodivergent brain? Here's what I've learned - I hope this can help other people navigate their own diagnosis and the aftermath. It's challenging, but it's worth it.
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✨ Always keep in mind - your autistic experiences might be different - because all autistic people experience autism a little differently. I'm sharing my story to help with better understanding of the challenges of being a late-diagnosed, high masking autistic adult.
♾️ If you are a late-diagnosed autistic adult or someone who hasn't yet been diagnosed but thinks they might be autistic, what are you experiences? Drop what resonated with you and your thoughts in the comments! ⤵️
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🎥 WATCH MORE:
1. Autism in Women: • How To Spot Autism in ...
2. Stimming: • Autism and Stimming: 1...
3. 5 Signs It's Both: • 5 Signs You’re A High-...
4. Overlooked Signs: • 5 Overlooked Signs of ...
5. 10 Clues: • 10 Clues You Might Be ...
6. Double Empathy Issue: • Why High Masking Autis...
7. Autistic Struggles: • Why High Masking Autis...
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⭐️ ABOUT US:
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If you're late diagnosed, recently diagnosed, or not yet diagnosed - what's your experience? What's worked for you? Share in the comments - it's so helpful for everyone here ⤵️
And here's Part 1: I'm Actually Autistic: My Diagnosis Journey (in case you haven't seen it):
ruclips.net/video/zerlIKPEgTU/видео.html
The biggest thing for me (46) is the realisation that I'm not a broken person faking it through the world, that it was autism all along.
But the frustration and anger that decades of struggle and suffering could've been avoided/mitigated by knowing I was autistic all along.
Although I also probably wouldn't have done half the crazy stuff I've done. Or maybe I still would've, some of the professional stuff probably not due to the prejudice against autistics.
But the cycles of overachieving and burnout have been amazing/crushing. Trying to move into something more sustainable now.
18 and overall I can say Switzerland has a failed healthcare system
I'm 41 and diagnosed with autism and AD(H)D for 3 years now and I've been going through this rollercoaster ever since. It helped a lot that I got this diagnose due to the knowledge that everything I was having issues with had a reason other then me being bad at things, but at the same time it's hard as hell to easing up to myself and accept that I am who I am and that this is oke. I am not Superman and can't do everything right, but I'm oke and should be mentally oke with what I do good. This is the part that I'm struggling the most with even though I did accept myself as I am, I'm still too hard on myself when I fail at things or need to take a step back
It has... allowed me to be kinder to myself - to no longer mask at all times; to actually invest in smoked glasses in order to help with my sensitivity to light - I am much less inclined to try and punish or chastise myself for not being normal. Even though I still have a lot of unlearning to do in that regard.
I’m in the sadness stage. Feeling hopeless.
As an entirely ASD individual, I almost feel as if Chris and some other AuDHD content creators are able to be interpreters and bridges between the ASD community and NTs, in much the same way that a hearing adult child of two deaf parents who is truly fluent in ASL, is able to fulfill that role between the deaf and hearing communities. They may not have the same experience of the world as their deaf parents, but do have far, far more genuine understanding of their “lived experience” than any other hearing person, and can effectively bridge the gap in a truly unique way.
Thank you, Chris and Debbie🥰
Thank you - this is so flattering! I agree that we can't speak for all autistic experiences, but our goal is definitely to help bridge that gap. It also helps me a lot to hear the experiences of other people in this community since my late diagnosis means I'm still learning what it means to be autistic too. I appreciate you being part of that 😍
This reply really resonates with me.
I am 68 years old and just got my diagnosis this week. I am so relieved because it explains what I have been feeling and experiencing for years. I have begun to forgive myself for not accomplishing what I was so perfectly educated to do. Your videos have helped me in my journey.
Good luck on your journey. Mine started officially at 64. Glad you discovered this channel. Hearing the experiences of others has been a great help to me.
I’m 71 and just realized my autism about 4 months ago, did all of the tests, researched everything I can find (my new special interest)…and have been journaling and reflecting on my experiences. I live in the US and I’m retired so not sure it makes sense financially for me to be officially diagnosed. Putting that off for now. I have 4 of my 6 children and their spouses currently diagnosed or working through the process, and I believe some of the grandchildren will be, too.. Maybe as they go through the process they can advise me as to what I would benefit from a formal diagnosis. At any rate, I’m just in the state of relief right now to understand who I am and why I have experienced the problems that I have.
@@BirdKat5324 I'm so sorry that all of you had to go through life for so long with this condition undiagnosed. You have my sympathies, for what little sympathies from a complete stranger online can give.
Diagnosed last year at 59! Ditto!
My autism diagnosis at 39 has been aided in the last year by your videos. It was devastating for me to realize how little people cared about how hard my life is/was. Now I am calm, but mostly by myself because neurotypicals have caused me SO much harm and just don't care.
Thank you. It's nice to not feel alone. I am trying not to feel irrelevant in the world, but it is hard.
I always feel like an elder here, at 74. First inkling -- hearing about Sensory Defensive Disorder in my mid-50s, for which I have compensated with sunglasses, loose comfortable clothes and bedding, etc. Then ~5 years ago, reading on Facebook about my nephew's struggles, I realized that he and I shared some autistic traits. That made me start researching (one of my special interests, and the talent that kept me employed at the same job for 20 years). About a year ago, I said something about autism to my trauma-specialist therapist of 20 years, and he already knew. I took all the on-line tests. So it was a slow burn for me to get to self-diagnosis, but reassessing my entire life, looking at my parents and siblings through a different lens, getting new realizations daily is a trip. Fortunately I didn't have any anger and not too much grief (so far), and acceptance wasn't too bad, but unmasking -- it's just happening, I have no control over it, and I feel like I don't know who I am anymore. My therapist keeps me grounded by reminding me that my basic values and my lifelong interests have not changed. That tidbit might be useful??
I always wondered about my own Audio Processing Disorder and why the fuck did I say "huh" so much. My God, even I got on my own nerves. I'm also audio hypersensitive and I've begun to use a unique earplug product called "loop". They;ve helped so much and my point is, until I knew what was the issue - my processing wires didn't touch - I just stood and dealt and so much angst and frustration could have been avoided for years. I experienced some anger and some grief for the years I felt I had lost. Especially academically. I knew I was "smart" but because I didn't learn traditionally, I had difficulty in school and then at 37, to discover that my "math stupidity" was actually dyscalculia, blew my mind. Like, this is a real thing!!! Math anxiety??? who knew. I'll tell who didn't..my teachers, counselors, parents and me. I felt broken forever. And the irony - to end up in a successful career in finance!!! I showed them. I mastered the calculator ;) us.loopearplugs.com/pages/homepage-lp1?gadid=647946549327&cq_src=google_ads&cq_cmp=19674497232&cq_con=145314081359&cq_term=loop%20earplugs&cq_med=&cq_plac=&cq_net=g&cq_plt=gp&gad_source=1&gclid=Cj0KCQiArby5BhCDARIsAIJvjITB7_cFU4UhBOhXLOK386wXt9GRCLGhYX_DSoij6OCywQegA_X22lAaAhHJEALw_wcB
same here, 56 years old
I needed this right now. I’ve been going through the frustration of accepting what I can realistically do vs what I used to do. It’s hard and it helps so much to know that I’m not alone in my feelings.
I’m 61 and at this point self diagnosed. My husband is supportive which is wonderful. I was surprised at the response a very close friend; when I shared my thoughts with her, she said that that was impossible because I’m too empathetic. I also shared my insight with my therapist, and she totally invalidated me without even asking any questions about why I felt that way. I’ve taken the surveys and made sure that I was utilizing the correct surveys. They all put me clearly on the spectrum. I would love to have a true diagnosis, but insurance has been horrible for me and I know it’s expensive to get a diagnosis anyway. I have stiff person syndrome and had to take LOA. It was during that time that I was able to take a breather and look into my situation and that’s when I realized that I am most likely autistic. It has been a roller coaster ride; at first I was very convinced, and then not so much after being invalidated. Whenever I researched autism, I felt like I had to do it in hiding. Some days I feel like “this is me” and other days I feel like I’m making it up. One thing that really helped was a nurse making a comment that maybe I was autistic and I had not brought up the topic to her at all. She was a nurse that sat with me throughout the day for five days while I had infusions for my stiff person syndrome. I was so surprised when she mentioned autism and my reaction startled her. She thought I was mad at her comment, but I was so glad that someone noticed something without prior knowledge of my history or personality. I feel like I’m rambling because there is just so much to get through. This video really helped me to see that the ups and downs are expected, even when you have a real diagnosis. Thank you for that insight.
Giving everybody here a heartfelt hug.
Wow, I cannot believe this video came out today. I am a mess!!!!!!!😩, I was diagnosed autistic at the end of September and am going through exactly what you have said in this video. I have totally lost my way after the initial relief and happiness at a diagnosis. I am seeing my doctor next week to get some anti-depressents. I have had a bad year, I lost my dad to cancer, one of my close friends died and now my diagnosis. I am burnt out, overwhelmed and struggling big time. I am so grateful to have watched this video as it explains so much of how I feel. Thank you so much. I do have support and am also doing a follow up course with the diagnostic team so just got to hang in there. 🙏🤞
I’m sorry that you’ve had a tough year. Geez… when it rains it pours. Sounds like you’re brave and doing what you have to do to inch forward. As big of a struggle as life is for you right now, it will get better. Sometimes it feels like a bit of a roller coaster ride at times, but it always smooths out long enough for us to catch our breath. I’m really glad that you have support through this time. That’s so important. Keep your head up and thanks for being here 🤗🤗
@@ChrisandDebby Thank you for your kind words.
Hang in there! That’s a lot for 1 year. 🙏
@@jangriffith7693 Thank you.🙏
@sarahb2652 I can almost promise you that you are going to come out the other side of this learning what YOU need to do that works for you and you're already here seeking tips and tools and encouragement. You won't BELIEVE the community of us that exist and it still makes me teary eyed after feeling alone for so long. Don't get me wrong, there are going to be sucky, sucky periods, but you're doing the work to understand what yours look like and how to navigate this NT world. You are not broken, you're not too sensitive, you're not a 'flake' (or, insert common adj here), you're not too little or too much of anything. You are YOU and that's the best you can do! (thanks Dr. Suess) but it's actually true. You are good enough and you have more support than you know. Figure out what works for you and do more of that :)
Thank you. I'm AUDHD and was raised by a narcissist. A parent is supposed to learn who their child is. It's not the child's responsibility to tell them. And she never bothered. When I was having a meltdown, or even just an emotion, she'd just scream at me and mock me. She's incapable of realizing, "Whoa, my son is having trouble, there has to be something to help." Instead I was a problem that was just in her way. So thank you for the idea of creating good images. I'm going to try that. And...trying to find a therapist is so f*cking hard. So hard. I want one that has AUDHD, because they'll _know_ exactly where I'm coming from. If I find one that works for me, their schedule doesn't work with mine. Or they don't take my insurance. Or they only work with women. It's exhausting. Thanks again. I'm looking forward to the next one.
This feels so much like what I'm going though (currently early 40's). I'm currently in the middle of the sort of crisis explained in the first 5 minutes or so. Everything is overwhelming and I don't really know what to make of it. And yeah, I'm reflecting a lot, and thinking back on all the awful things that happened growing up, and how my family never could handle me.
I tried therapy again just two days ago. I was so excited, armed with actual WORDS that I could use to finally articulate what's going on in my head. But it went spectacularly awful. I felt so uncomfortable with how little the therapist was interested in what *I* wanted to say, that I thanked them and left the tele-health 15 minutes in.
And I'm also uncertain. I've been diagnosed with ADHD for years, but always felt like a lot of ASD symptoms fit me. So I went for diagnostic testing. They confirmed the ADHD diagnosis, and said that I tested well into whatever range would qualify as ASD for that test, but he refused to issue a diagnosis, saying I had past family trauma that may be confusing me. So.. I would have had ASD, but because my mother is awful, I actually don't? This was a huge opportunity to feel validated, and understand why I feel like I do, and they couldn't give me that.
This hits hard. Got diagnosed at 37 a month ago. After years having a diagnose of shizotypical personality disorder, people being scared of me because of the stigma on it. Now all of a sudden it makes more sense and no extreme negative stigma.. in my eyes at least. (i will always fight to get rid off the stigmas, whatever diagnoses). My mom always knew and fought for recognition. Also still have revisiting depressions wich dont make it much easier. Having an identity crisis. Thanks for this video, i feel a lot of it what you tell. Feel less alone, and I hope with me a lot of people in the same situations. Dont know if this comment makes sense but it does to me lol. Great work, thnx for all ur videos, you help so much, hope you know that!
This is very helpful, getting a late diagnosis, 60 yo, amidst a wicked mother of all burnouts can be a very very lonely place. Thank you for alleviating this.
I'm 54 and diagnosed several years ago with the ADHD piece and later with the ASD. I am in a year long burnout but having trouble climbing out. Please understand that hormones play a large part in this also. In earlier years, I had hormone cycled migraines, anxiety PMSDD and this makes total sense to me, but the coping mechanisms are hard to find.
Good luck and I know you'll do you just fine.
The perspective of not focusing on deficits and rather reworking that energy into optimising natural abilities (and possibly even enjoying the process) was a massive light bulb moment for me. One can know things without a deeper understanding of how to implement it into one's life, which was the case for me. However, hearing your story and feeling my own reflection in your words opened a door I didn't even know I had shut. Sorry for the gushiness, but I just want to sincerely say thank you, Chris.
This has been my experience, too. So much grieving and resentment, and I found out I'm autistic in the midst of a very long burnout that I'm still not out of yet. It's so exhausting every day. I need a Debbie, too. 😭😭😭
I think everyone needs a Debbie! ❤
@@CricketGirrl I agree
I have not been diagnosed and don't see the need at 64 years old but watching these and other videos, reading forums of women with autism has me convinced that this is me. A diagnosis would have benefited me when I was much younger maybe 20s or earlier but at that time I'm sure it wouldn't have happened. When I look back things fall into place. Ironically at age 40 I had gut problems and finally got help from a naturopathic doctor who specialized in autistic children, helping with gut issues. He liked that I was an adult that can give him different feedback that the kids had difficulty explaining. He was treating me and getting the same results that he did with his kids - ding! Of course we never thought of me as having autism. Now that I'm retired I've delved into this (my typical, nerdy, uber focused) research, I'm self diagnosing! My life would have been so different if I was born when diagnosing was even an option for me.
I neeeeeed a Debbie!! ❤😢😊
Same. I was thinking how much I just want a Debbie, not have to be my own Debbie... dammit.
Me too!! 😂
Maybe sell them in your shop... for everybody here...just joking. 😅
I understand having multiple disabilities, I have seizures/epilepsy and ADHD. I also have to keep moving my hands around I just don't know why. My gf has been autistic since she was little. We've known each other since kindergarten. I don't know if I saying it right I've never been able to say stuff or explain stuff good so please don't get mad.
Good job explaining. Totally understand
I think you talk about flapping hands. It's used to regulate the nervous system.
I'm sending you ❤ from Spain.
Thanks for sharing this - and we can understand too. And you're always welcome to share your experiences here - we appreciate hearing and learning from everyone
@@consuelonavarrohidalgo5334 thank you
@@ChrisandDebby what's bad sometimes when I'm trying to explain stuff to my dad or answer him if I don't answer quick enough I get yelled at sometime my brain will just go blank or be like its going 100mph plus. He sometimes just doesn't give me enough time to think sometimes.
Thanks so much for your work! I just got diagnosed and I am super high masking. My brother is also autistic, but yet undiagnosed, and has a lot of sui*idal ideation. I am now trying to figure my problems out while communicating my wins to him to normalize the topic. He often has huge acute problems with emotion regulation , but I think we can manage to make his life worth living again in the long run. I love him and want him to survive the difficult times. Through supporting myself I can support him as well (as much as he allows me to - of course). He is not a burden and never will be. He is my precious brother and I want him to live his life on his terms as he enjoys it. ❤
He's lucky to have you to support him ❤️
Have you both learned about autistic burnout? You might need some professional support (if it's possible) but learning about autistic burnout would help you have a better idea of what he might be going through. Of course, we can't diagnose or guess at that, but when I was in my darkest times, I later learned it was autistic burnout. And it really feels completely awful... and hopeless. But he can get through it, especially with support. We have one video about burnout but we are working on a lot more coming in a few weeks
Here's the video about burnout: ruclips.net/video/Ih_vTZb8Tmw/видео.html
Also just want to say - it's hard being in your role as a supporter to your brother, who sounds like he's really struggling. It makes it even more important you also take good care of yourself and get support for you too. But you can get through it together - and it's great you're learning more on how to do this too
Thanks! ❤ Yes, that's definitely a possibility. I've also been in burnout + depression for a few years a few years ago. Your video on burnout is so validating. Finally someone gets it.
Yes, I will look after myself! 😊
I'm excited for another show from Chris and Deb! Chris is extremely relatable!
Thanks so much for this! Let me know what you think after watching and whether you can relate to any of this story today 🙂
Thank you for this. It sums up my experiences nicely.
I was diagnosed at 50. Eleven years ago next month. I also have ADHD, and at the time CPTSD from lots of neglect and bullying as a kid. I wasn't able to understand and accept my autism diagnosis because the CPTSD was constantly poking the autism and ADHD in the ribs stirring things up.
Fortunately, I have been able to work though the CPTSD which calmed things down a lot! This has allowed me to focus in on autism and ADHD so I can learn about myself and get to a place were I actually like myself and accept myself! I am so grateful for the online communities and videos like this. You are right. It is a journey full of ups and downs. I, too, have moments where the frustration about the past rise up, but it passes quickly and it doesn't happen nearly as often now.
I can be proud of the accomplishments I did make despite having undiagnosed autism, ADHD and CPTSD. It's unfortunate that my physical health has suffered so much from decades of chronic, severe stress. There is so much I can't do anymore. I am having to learn new ways to express myself and new ways to make my way in the world. But slowly. So very slowly. I have to give myself lots of time and space to rest too.
The funniest thing has been learning about all the stimming things I used to do (and some I still do) that I didn't even realize were odd or different from the NT experience. I wish I had started a list! LOL
Thank you Chris and Debby!
Hi Chris, I am going through my official diagnosis. Autism, OCD and Alexithymia. I am in the anger phase. Feels like my life was a lie. I was forced to mask for years. Until I really started to look at your videos and a few others, I connected the dots and went for my journey to a diagnosis. So much of what you say resonates with me. It brings comfort, especially in the phase I am in now.
I'm in my 40s and recently have self identified as austistic. It explains a lot of my experiences and that I have been in autistic burnout for the past few years. When I came to the conclusion that I'm autistic after many hours of research and self testing, I thought it would get better. Instead, it's gotten more difficult just to get through each day. Thank you for your video. I will do my best to keep moving forward, even though it will be an excruciatingly slow process.
I got tears in my eyes watching this, got my autism diagnos almost a year ago now and I can relate to so much, the relef when I got the diagnos but then the falling apart...I dont think I have been so confused and lost before, but videos like this dose help me understand and put words to what Im experiencing and feeling 😊
Im right now trying to understand and accept my bodys limits and what it needs but its hard when you use to be able to do so much before
It’s a struggle because throughout this period you still try to convince yourself you can push push push and keep up a tempo that wasn’t working…. Living a lifestyle that wasn’t working. Relearning is a confusing process and a difficult one to work through, but you figure out a little bit each day and life gets better. 🤗
Brilliant so relatable...I was only thinking the other day that I feel like I am living someone else's life when in fact I'm starting to learn what it is to be the real autistic me...
These live conversations are so helpful! Thank you. Hello to all, we are getting there. Keep going on your journey. ❤
Thanks Pam - glad to have you join our live premiere! And yes - we're all getting there, together 🙂
I don't have a diagnosis, but when I had my "aha moment" and realized I was most likely autistic, it was a similar experience.
I have always loved playing in the symphony, because that's one place where they literally give you a detailed script of how to participate. In other areas of life, it was (is) like being in a rehearsal where everyone has the music except for me - I have to peek over other people's shoulders and try to wing it. And although I've gotten relatively good at this over the years, it takes a lot more effort that way, so *of course* I get overwhelmed or worn out easily.
I really resonate with your experience of having to admit that you can't keep doing everything you had been, having to admit your limitations, and slowing things down. It sucks. But I finally decided that people would rather I do less and do it fully, enjoying my life, than do more and half-ass it while being constantly on the brink of collapse. Hopefully you have come to the same conclusion.
Hooray for Debbie helping you out! ✨👍😊
I'm very grateful that you've made this channel and you're helping other people, and I'm grateful to have found your channel as well!
Thank you all the way from northern Minnesota ☺
You have no idea how much I needed this video right now. I’m right where you were at the beginning of the video. I had complete misconceptions of autistic people’s struggles because I saw how severe my cousins that are non verbal are. I’m infuriated right now cause I have family members and an ex girlfriend I dated all through HS that work in therapy. I’ve always just been an asshole and have anger issues and depression according to them. No one believes me because I was smart enough enough as a kid to know that the ADHD medication that they had been giving my other family members were making them worse so I masked to pretend I was “normal”
Now at 41 lost and broken, completely misunderstood and have zero friends. Without my dad‘s support (who happens to be the only one who actually believes autistic) and channels like yours and Orion Kelly I don’t think I’d be here. I was to the point of being ready to just drive my car off a cliff because nothing I ever did was ever good enough for anybody, and nobody likes me for who I am. I’m at the point where I don’t like myself and that’s because I don’t even know who I am and I’m trying to figure this out, I already deal with chronic pain stomach issues all the other things with no health insurance. Realizing I’m autistic and how hard it is to already get a diagnosis I feel completely fucking helpless my stomach bubbling just typing out this text. Thank you for being open and sharing your story because I don’t feel completely lost and alone anymore.
You are an amazing soul Chris, I don’t have words enough to thank you for what you do. 💚🙏🏻
I had similar issues with anger and being treated badly. I am 49 and just in the middle of assessment and the last year has been a rollercoaster ride. I hope you find a way to get through this, joining the autistic community was a massive help for me, maybe it could help you too.
@@nozhki-busha thanks so much. The community has already made me feel more accepted and understood than I ever have in my whole life. I’m so blessed to finally have found my people!
Diagnosed age 61.
Learning ‘hard’ was not the only way to do things.
A couple of years of reframing is refreshing my life.
You have such a gift for eloquently putting words to the autistic experience! I was diagnosed 7 months ago and this describes almost exactly what I have been experiencing. I think à lot of my feelings are associated with the deficit-based evaluation process. I had to take my entire life and look at it through a lens of "disability" and that really took a toll. But I had to look at my "deficits" in great detail just to get a diagnosis. That left me feeling really down on myself, incapable, profoundly disabled.
I am learning, though, how great a difference small adjustments can make: allowing myself to take breaks, not committing myself to too many opposing tasks that require switching my brain (for lack of a better term), limiting social interactions, ignoring phone calls and replying by text... These have made a huge impact.
I have also seen how my health is improving: far fewer headaches, better blood pressure readings, and greater patience and understanding from my providers. I feel like I'm finally being heard now that I feel like it's okay to ask for clarification!
Thank you for all you do to make others feel understood and in good company. We are all still learning. And we were meant for so much more!
I thank you for this video. I just turned 40 and I am possibly on the cusp of my ADHD and ASD diagnosis. I already have a bunch of trauma from childhood and I’m trying to find mental health help for that too. I’m glad that I know that the road ahead may be tough. It is invaluable, thank you.
To the once with itchy skin: a therapist once bought me a good lotion and told me, that everytime my skin starts to itch, I should be aware of it and remember it. Then take the lotion (whenever it is possible but at the same day) and while applying it to the itchy spots I should ask myself: "where did someone or did I cross my boundarys?" because skin is the barrier of our body and problems with it can be signs of crossing our barriers/boundaries.
I loved that. She was the best.
🦋🦋🦋This came in the right moment. I was getting desperate and hopeless in the process of adjusting. You show me that it can be done and the pain is normal. Having been a caterpillar, coming out of our cocoon and unfolding our butterfly wings can be painful. But so worth it. 🦋🌞🦋🦋🦋
Ohhh Chris. So much of this resonates with me. I'm still in the long wait for the assessment, but it's definitely AuDHD, and holy cow have there been big emotions. And big emotions with emotional dysregulation and probably alexthymia is SO FUN (no. No it really sucks.) And the anger and relief and depression and fear and grasping for ANY return to normalcy... This entire year so far has been part of the process. It's exhausting and incredibly lonely and I know I won't ever fully be back to where I was, but I want my life back.
My goodness... you are describing my experience word by word.... self diagnosed autistic at 65. I am in the process of giving up my career of teaching. Something I dearly loved but ... I realized I simply can't do it anymore. I have to find something else. And it hurts!
RUclips has helped me immensely. Just learning what it is all about.
My partner clearly has ADHD.... that is a struggle too...adjusting.
I keep reminding myself: No, we are not worse people than before (self) diagnosis. Being yourself more is a good thing. But this year sure is a struggle!
This is spot on, thank you and thank you to everyone's comments! 45 and diagnosed last month. Learning how to adjust to a lowered capacity is so difficult (which i was fighting and resisting that i hit burnout hard). Full time work and full time parent is torture.... you can't drop those!
"People were the biggest issue for me" - for real. And yet, people are the reason I stick around.
Thank you so much for this.I got my diagnosis a month ago at 67.You have been able to put into words how I have been feeling.The unmasking and trying to discover the authentic me is going to take time.Your videos are greatly appreciated
Just diagnosed yesterday at 21. I just feel so lost and alone. Thank you for all of your videos. They have been so supportive throughout my entire autism journey. 🙏
Stupid work and meetings interfering with my personal life, again, so sadly I missed the live :) Looking forward to watching this. I dont have an official diagnosis (yet), but I know I've been going through a lot of identity crisis and looking at my memories with a new lens.
Diagnosed at 55 and still trying to accept....everything you mentioned is exactly how i feel , thank you for your relatable video's, they are a big help!
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I'm a late-diagnosed therapist, and I'll be showing this video to my clients! I was diagnosed at 43 by a therapist I'd been seeing for years. It was 5 years after the DSM changed the definition of autism, but it wasn't work that gave me the final clue. My brother had been searching the internet for solutions to his social issues at work and found a book about Asperger's in the workplace that was actually helpful. Autism explained much about my brother, my father, my nephew, and myself. I spent a couple of years learning to understand and care for myself before I started diagnosing and treating others with autism. Now most of my clients are adults with autism and/or ADHD, and I love my work! I've learned that I need to take a break between each client, instead of seeing one right after the other and wondering why I was so exhausted and irritable. I'm careful to identify when I'm holding myself to neurotypical standards. I've learned to focus on what I do well and seek work that allows me to bring that out. Right now I'm creating a Psychology Today profile, so that others exploring their neurodiversity can find me and have a therapist who can really empathize with their journey!
Chris, this is beautiful. Its been almost 5 years post dx for me, but I feel like there are some key themes that seem to be fairly universal. That whole finding out thats how you operate, and reanalyzing your past through that new lense... Its a wild ride.
Ive still not quite figured out what to do going forward... And still taking it one day at a time, until then... I mean ive been punting for years, so whats new...😅
As a late-diagnosed autistic person, I greatly value your videos.
Our lives are very different, but your experiences really resonate with me.
To me, it was the most liberating thing to realize what my otherness was. I became free and relaxed. I also hate my memories, but I'm glad to have gotten out of the closet. I told all my friends and family, and lately, even my colleagues, that I'm autistic. They now understand me better, and my colleagues are amazing with regard to my what looks like idiosyncrasies.
That first year is hell. I'm still in it. You describe it perfectly. Yes the upset with teachers, friends, etc. I find it odd that it seems that we need to figure all of this stuff out for ourselves. There's no one telling us how we should feel and why and how to deal with it. Everything that we were told simply was not correct. And now it's all on us. And one day it just hits us that there is something amiss. It's like everyone knew, but us. You tell someone you're Autistic, and they reply with "That makes sense", "I always thought there was something amiss". They why why why did they not say something? Just let us keep on thinking that everyone is like this, and how do they cope with it so much better? Why does it seem so easy for other people? Why are they not stressing out about interactions as much as I am; years, even decades later? They forget about things in a few minutes and I'm replaying conversations from 15 years ago - I mean literally, this is not a hypothetical. And we get the response "I always thought it was weird that you couldn't talk properly on the phone" or "If he just applied himself more" on all my school reports. Applied myself more? More than what? I didn't have any friends, all I did was school work. When I wasn't sleeping I was schooling and I need to apply myself more? There is so much anger. Why didn't someone tell me? They always knew and it makes total sense? Then speak out for crying out loud! This video is down to a T, spot on. Totally relatable. You're lucky to have Debby supporting you. From those who are not, I get comments like "Calling yourself Autistic is an insult to those people who really are Autistic" when they think Autism is only someone who also has intellectual disabilities. Then occasionally "maybe you are Autistic" when I'm unmasking. Then "Why are you trying to be so difficult?" when I'm simply trying to understand what someone is saying to me, and rather than my usual just shut up and pretend I understand, actually question what was said and express that I do not understand. Oh and catastrophizing, don't even get me started on that one.
Thank you. I am going through what I guess is the second part you described (the anger that I'm this way and wishing I wasn't).
It's been two years since my diagnosis at age 33. It's been... Rough. Mostly because I still have this expectation of being better. Being fixed back to normal.
Furthermore, I haven't found a great representation of my experience. Everything I've read about people getting diagnosed has been represented as positive.
You are the first person I have encountered who has talked about the negative side. And honestly, you made me cry. It was like finding a mirror.
So thank you.
Thank you for this video. I was diagnosed just over a year ago and and feel like I am at a very low stage right now where I am struggling to accept how little I can do and feeling pretty useless. I seem to become overwhelmed so quickly these days. This video has given me hope.x
Fascinating. Our stories are so different. I was clueless that I was autistic and had a good friend (the one who raised my autistic son from age 16 onward) hint to me for several years that I was also autistic. I finally got the hint one day after a meltdown in Lowe's. Mind blown. Suddenly my entire life made sense and I was liberated. No mourning, no anger, no fear ..... nothing negative. Just freedom. I finally had answers and direction. (I did get officially diagnosed when I was 44 - ASD and ADHD.)
I love your channel. I've been mostly commenting with a different YT channel name but I'm not sure I'm going to keep that one so I'm trying to shift my favorites over to my personal account.
You nailed it! All of it. And the Autistic Survival Guide To Therapy book you kept holding up is literally beside my while I watch this video. For me the incessant ruminating that I do about whatever topic is top of mind in that moment is excruciating! You touched on that, but could you maybe devote a whole video on that issue?
I was diagnosed at age 37, a dozen years ago, after 5 years of uncertainty. It's an experience that came and went quickly, literally in the middle of a work day, and the therapist (at a public agency) literally had me pegged as soon as I came in through the door. Life went on pretty much as usual, after this point, but now I had more certain info to put on forms & applications, and could confidently tell people that I had the condition. That would eventually lead me to landing a specific job, which I still have, but not for another half-dozen years.
I was diagnosed a few months ago at 51 and I am still on a rollercoaster of grief and self acceptance. I am processing through therapy, friends, and by making music to express all these emotions. Thank you so much for this video! It and the comments here really help me to not feel alone.
I loved how honest you were about your diagnosis.
Ngl, had a little cry watching this. I'm experiencing a lot of the bad shit rn, especially the bad dreams, and it's nice to know that it's not just me
Bad dreams are horrible. Sometimes mine were so bad they ruined my morning. But.....things can definitely get better if you work at it. Spend time thinking about something or someone special before you go to bed. I try to get as specific as I can and just force my brain to keep thinking about it.
@@ChrisandDebby Thank you
Ironically, this is very similar to my experience. I was originally diagnosed with ASPD though about ten years ago, I didn't know I was dyslexic until about two years ago, and I only learned I was autistic this year. Fortunately, as I've already been through this once before with ASPD. I initially rejected the idea that I was autistic, protesting that it was just the ASPD, but it became pretty apparent after a major burnout incident that everyone was probably right, so I went over their points, researched the topic, and finally agreed with my diagnosis. Ironically, it ended up as quite the relief as it explained quite a lot not already covered by the ASPD, and I'm doing much better with everything in life as a result now that I better understand the causes behind everything and I know how to accommodate myself now. For the first time ever, I actually feel like I fully understand myself, and the videos from you guys were a HUGE help at everything and proving that I'm not crazy, so thanks for everything and I look forward to see you two all the more going forward. :)
Thank you. This gave me chills because it's exactly how I am feeling. I am at the rage at every one in my past stage. knowing there is something past this point is very helpful.
Thanks for being so real and honest.
I was diagnosed a few weeks ago. I am 57. I am also in burnout. I was given a workbook to help me get out of burnout and that is what I am focusing on doing right now. My next step will be to try and learn how to unmask.
What you share with us and your wide-reaching perspective have helped me through this phase of adjustment. And how boy, it is an adjustment. Thank you for your insights and support. ✨💖✨
Thank you for sharing your story... it's sooo similar to mine. It processes in stages.
And Omg...are we HEALING? ?
Thank you so much for this. I'm in the middle of rediscovering myself after getting my diagnosis a couple of weeks ago. The anger over past traumas is really relatable and thanks for the tip on replacing bad images with some new, fun and inspiring ones.
Very similar experience - a full year of feeling unmoored and disoriented as I had to re-think my entire life. I think it gets harder the older you are and the more you have become used to masking. I was identified (not diagnosed because it still could cost me my job) when my daughter was diagnosed, and I've watched both of us go through the adaptation cycle. Masking is a big part of the difference. For my generation, it wasn't a choice. If you wanted to function in society, you masked. After fifty years, the mask starts to become part of you. I developed a whole vocabulary of terms to describe it. My favorite was to say "I think in print, then have to translate into spoken words when I talk." This explained why I had to take time to think when talking, and why my speech was always very formal and structured. Glad my daughter has the freedom not to mask, though honestly every now and then things get tough for her and I can't help thinking "They're not going to get it. You might as well mask up until they go away." (I don't actually say it, of course).
I'm currently waiting for a call back to be able to schedule an official assessment, so I guess at the moment I'm self-diagnosed. And even if it comes back that I really do just have social anxiety, I think this story is still valid and I just have to tell someone.
Overall I get why most of the people in my life would have missed the signs, not knowing what to look for.
I am, however, even more salty than I already was with one of my ex's and his family, now that I suspect myself to be autistic. Even though this whole event happened over 10 years ago.
I took a trip with my ex on spring break one year to meet all of his family and friends, in Portland Oregon (I'm from a rural community myself, so not so many people). They unintentionally set me up for failure from the get go because they thought it would be funny if his family and two best friends rushed past him and group hugged my already stressed out self, and of course I couldn't respond the way that I was feeling cause that would be a bad first impression.
I spent the whole trip feeling on edge from all the socializing we did: meeting the family, going to a market (which I actually did enjoy, and still have some jewelry I bought there), going square dancing (which was a shared interest), having to borrow a skirt from one of his friends because I didn't know dancing was on the itinerary, plus having to learn how to put on a petticoat to go with it (I was not a fan, it was very uncomfortable) I was an overwhelmed nervous wreck the whole week.
I thought I did a lot of good things on the trip that should have endeared me to at least the family, though. When Ex got sick on the trip I took care of him, cleaned the house while everyone else was gone, even cleaned the tin cans the way they said they did for recycling. I made them dinner one night, and even brought homemade banana bread.
When we got home I managed to convince myself that "everyone is too busy focusing on themselves to notice you," and overall felt like the trip went well.
Until, a few months later at the end of the school year, his parents called him to say that no one I met on that trip liked me. They all thought I was rude, and didn't show enough interest in his excitement over the IKEA storage (when really I just felt exhausted). I was emotionally scarred and questioning myself for years after he told me that.
But the main reason I'm trying not to be extra angry with them for all that is because he and his dad were both autistic. If anyone should have been expected to give a girl a little leeway and recognize that some of us need some down time, I feel like it should have been them.
I wish I could go back and be like "you see, I wasn't actually a terrible person."
Also, I ended up getting super sick with whatever he had, and had to catch up on homework between bouts of throwing up. So all in all, not the best week of my life.
I'm currently five months post-diagnosis (ASD level 1 and inattentive ADHD). So far the biggest realisation I've had is that when I was diagnosed with social anxiety disorder back in 2007, it was likely a misdiagnosis. I know that it's possible to be diagnosed with both social anxiety and autism, but I've since figured out that nearly everything that could be explained by an anxiety disorder is better explained as autism. But because I'm AFAB and because autism is still largely seen as something only AMAB people can be diagnosed with, it was easier to diagnose/dismiss me as anxious. 😕
Im gonna offtop a little, but here's my thought on what ADHD, ASD and giftedness have the most in common.
They all want to achieve the impossible.
That's because to us... nothing is impossible! 😊
Thank you for such an honest video, I’m late diagnosed at 56, it brought so many answer yet so much to walk through, it’s hard but possible. Thank you I feel you have put your finger on so many things.
Thank you for this! Sometimes it is hard to be patient with myself and it all gets overwhelming. I like what you said about learning to play the cards you've been given so you can play the game better. I see this as a better strategy than focusing on how I can't figure out how to be "normal." :)
Yes yes and yes ,this is so relatable and extremely helpful, im coming up to 63 and got my diagnosis in January because in the uk the waiting time is so long id somehow imagined that once i got a diagnosis suddenly life would get better, everyone would understand me and learn about autism, and in truth things feel worse, im learning to understand myself better, so i wouldn't change things but i really understand the feelings of anger and grief ,thank you for explaining it so eloquently, its good to know these feeling are normal and there is light at the end of the tunnel.
Hey, congratulations on 50k subscribers! 🎉 This channel is amazing and people know it 😊
This video was really relatable. For me it's the different emotional stages between diagnosis (realization) and acceptance. But my personal timeline was/is different. Luckily I fast forwarded through the stages of grief and rage. After three, maybe four, it was done.
Since then, I'm trying to figure out, who I am and what I am good in. So far, it's the best, scariest, most challenging and most exciting part of the journey.
But if there was one thing, I could change about my autism, I'd like to have the skills back, that got lost, during the autistic burnouts.
Thank you so much for your videos, diagnosed at the age of 42, it's been a journey and your videos have really helped, especially with having my experiences validated. I'm still learning about my Autistic self. I've had a life of mental health challenges and I'm finally getting some answers. Keep up the amazing work.
The mess of emotions, especially the anger and frustration, and suddenly beginning to understand the Autistic burnout, it's all overwhelming and interesting at the same time
It's been 13 months since I was diagnosed. I was happy with the diagnosis. For the first time in my life I felt like I was complete. All those weird things I experienced growing up, that I was always gaslit when I told people, finally made sense. I haven't felt any resentment towards my parents, or teachers. I always knew I was different, but I simply didn't have the words to communicate it. Now that I know why I feel different it's been rediscovering who I am, and finding better ways to deal with problems. The most challenging parts have been health care, and work. I have to advocate for myself a lot more with the doctors. Sometimes the standard treatments just don't work for me. I see a therapist every week to manage my autism, adhd, depression, and anxiety, as well as the ptsd from constantly being forced into situations that aren't healthy for me. It's been even more difficult with work. My management has been neutral, and usually makes things worse when I meltdown. HR gaslights, marginalizes, and invalidates me whenever I get involved. I have a union that makes sure I'm treated fairly, but at times it's also a struggle to convince them I need help. The push back leaves me second guessing and doubting myself. Despite trying to make things easier on me as well as those I interact with, I still am left feeling guilt and shame any time I have to put myself before their demands. I'm left throwing my hands in the air and doing what I need to for myself, despite any consequences. I also won't apologize for taking care of myself any more than they won't apologize to me when they demand too much. I'm still happy to be autistic, but sometimes the day to day battles are too much.
Chris, holy crow! Now, I often feel like you and Debby hit the nail on the head for me. But you just described something I have been desperately struggling with for months now. Feeling like I'm letting people down, caught in that limbo where nothing is working. A tempo I want to maintain but can't.... I love my job and the various hats I wear. In many ways it's an absolute dream job. However, I cannot 'keep up' with my colleagues in scaling my business for reasons I now believe are autism related. (For example...The amount of task-switching involved with servicing clients grows right along with the number of clients and this is increasingly difficult). This is one of the driving factors that lead to the autism discovery. I wonder if I could ask you HOW you were finally able to decide what you truly needed to back away from, business-wise? And, perhaps, what process(es) you went through to make the choices. I am constantly learning about autism, but it's a lot and I am so afraid I am going to walk away from something I can learn to manage. And whether that will be a full break or maybe just relinquishing certain 'hats' I wear in the agency. Like, I guess I don't know how to figure out what I can learn to do differently and what is simply outside what my autistic brain can manage and still maintain regulation. I want to figure it out.
I was diagnosed less than a week ago, and I'm feeling a mix of emotions. I'm 31 years old and have always been a very antisocial person. I don't have a social life and I don't really care to have one. Throughout my life, people have been very unpleasant to me, and my husband is everything I need (he's an angel to me). Sometimes I feel relieved to know why I've never fit in, but at the same time, I wonder if I might be faking autism (even though I've seen two professionals who confirmed the diagnosis). I've started respecting my limits and I'm trying to do everything to make myself more comfortable. I bought earbuds to help me minimize discomfort at work (I've been coming home with headaches and nausea every day). It's like I'm starting a new life. Thank you for sharing your experiences and tips 🙏🏼
I need a Debby! I resonate with this video SO MUCH!!!
Things have been very very rough. You're right about the only two options we have. I wish I could lose all my baggage and memories and experiences and start over in a better place nowhere near the shitty place I live with all the awful people. Preferably less people, a lot less.
I hear you. I try not to interact with people at all anymore.
This feels like exactly where I am at. I’ve recently discovered that I am more than likely autistic via my doctor and a MH councillor who put me in touch with a local charity that works with neurodiverse people (NEST) but unfortunately I am from the UK where our waiting lists are capped for diagnosis unless I go private which I can’t currently afford. I’ve been lost in feeling like I wouldn’t be stuck if someone had noticed when I was younger and I’ve felt exactly as Chris was saying. I do have a very supportive family and partner but it’s when I’m sat alone on my break at work (like I am currently) or at night when the thoughts creep in telling me I don’t know who I am and I don’t have any form of closure and it’s so intimidating. I’m so thankful for this channel and how much you do and speak out for people like myself. You both are wonderful human beings and thank you for sharing your story and helping me try to navigate my own 💜
I'm so much in the grieving phase still. Looking at my job the people I work with and what I do. The theoretical potential for the remaining twenty years of my career. Balanced against a realistic awareness that I maybe can't do that stuff. There is other options and I'm trying to reimagine a future that is sustainable for me. It's hard of course.
Chris (and Debby!), I really love this video! I sensed such an impactful vulnerability in your voice in this one, Chris, that resonated in my spirit as well as with my experience ( I self-identified following the first instance of burnout I ever experienced, and I didn't have the language until months after leaving mt FTE role, back in July of this year and I am now meandering the challenging space-non-space that is Adult ASD support. It's been a similar emotional ride for me as you described in this video, and it is so helpful to see someone walk out the process and demonstrate "the other side" is alright. Love your content! Been watching along my own newly embarked on lifelong journey of learning and advocacy and learning a lot from your content. Thanks for what you do! I hope you always take care of yourself and each other!
Thanks Chris. I enjoy and find your videos really helpful. I’ve just added my own story and journey…
Thanks to you and Debby for your videos which I’ve found really valuable and helpful.
The BBC interviewed me about me and my autism:
‘I felt broken until my autism diagnosis at 70' - BBC Wales, 9 November 2024
Thank you, Chris, for candidly sharing this. It made me cry!❤️ And Debbie, being so supportive, also made me cry!❤️ I can relate to this through my self-discovery at 53. I love your positive thought exercise and can relate. I look forward to your videos every week! Thank you❤
We’re really happy you’re here. The world feels less overwhelming when we share and help each other 🥰
@@ChrisandDebby❤
I'm pretty sure I'm right in the middle of hopelessness. And I'm desparately trying to still fix things, live up to these standards that I've had for myself, and the desperation of not reaching those ideals. This is such an aptly time video. I just don't know how to get myself out of this. I'm feeling so burnt out.
I recorded a drive and talk earlier in the week and so much of this is what I said. I was thinking I was going to post it, but I am still not sure.
You are very lucky you have met your wife Debbie, sounds like she is compassionate, accepting, and willing to gain understanding of someone as different to everybody else as we autistic turn out to be. I hope you tell her that she is great, the best.
I was not as fortunate, and circle of people I knew, and spent time together now and then, some of them I even considered friends, began to shrink, shortly before I received my diagnosis (like you just autism diagnosis at 41, while I suspect to be an AuDHDer), starting with my 10 year together partner, then two of my ‘friends’ turned to be unwilling to accept the new me, because I would ask to meet in a park not in a pub for example, or ask to set a time, and date ahead, I had to let go many other acquaintances too, so now, 4 years after diagnosed, the circle is down to one friend, and 2 buddies, and I am OK with that, it is better for me I do not see anymore those toxic people. No more sponsoring ‘friends’.
Healing continues. Never give up. Except slower now. I decided I will try to get a degree again, this time for real, with a purpose in mind, something I was talked out of doing when I was 20, becoming mathematics teacher, so I’m at second year of BSc Mathematics at OU now, piece a cake, but I am working only 25h a week now, just to pay my bills,
I used to say through my life that profound truth about not giving up, except in a bit humorous way so as not to sound like I am trying to berate them or something. It went: “Never give up, never surrender, it is better to err, than do nothing, to err is still progress, except in a wrong direction :p but stagnancy is death, and it does not matter who pulls the trigger.” Sadly, some of us walk that path to the end.
In your videos one can really see that you are a very talented teacher. And in this one it was really helpful to see the struggle and steps out of it. Now I would like to see Debby’s side of the story (maybe she needs her own channel). So many, maybe all late diagnosed go through that. Thank you for sharing your experience. It gives others hope. Keep up the good work.
Thanks for this and everything you do Chris! As someone on a similar journey what you do helps and truly matters.
I'm probably not quite as far on the roller coaster as you describe (I'm 41 and found out 6 months ago). Most of what you describe of post diagnosis (happy then anger then depression then starting to accept) is the same though it will probably take a lot longer to fully process. Additionally we have 2 ND boys (8 and 6) so are also experiencing it through their eyes in real time as they are coming to terms with it much earlier in life.
For me personally, I'm not sure if finding out being an aspie was a blessing or not. It certainly explains me to a T and helps me to avoid ASD pitfalls, but it also seems to have taken some of my pride away at being different. I'm sure knowing early will help at least 1 of my 2 kids quite a bit (they have quite different personalities). Day to day not much has changed as my profession is in IT where my logical brain is an asset. My wife and core friends haven't changed it's just more of a "oh that's why I'm the way that I am". Looking back on childhood I'm not sure it would have changed much either but obviously that's very specific to each individual. I was never concerned much with fitting in and while I don't know if subconsciously I felt like I would be excluded if I had ever tried but I never really recall wanting to be included with the "cool kids". I had a small group of good friends and then eventually girlfriend and wife so I was fortunate to never really feel alone. The "cool kids" conversations just always seemed indirect and sometimes fake so it didn't seem appealing to be in those groups. I always had excellent hearing though and could learn a ton from the sidelines quickly to help me figure out who were honest people and who were putting on a facade and to avoid. As silly as it sounds now, while I was very aware of the indirect nature of NT conversation, I only understand now WHY it occurs and the connection that small talk creates between two NT people. Before I just thought I was unique at being direct and efficient and everyone else was afraid of bluntness, rather than them trying to build a connection. My flavor of ASD I could always read body language extremely well but am terrible at my own body language that I give off. Heck in groups looking back, I probably inadvertently wrecked some NT NT connections because I would sometimes out loud "translate to bluntness" people talking to each other when their face didn't match the pleasantries that were being spoken by verbally saying something like "you sure? your words said blank but your face and tone say otherwise". In my head I was doing them a favor avoiding surprises later on and speeding up their conversation on how they feel honestly but now I look back and chuckle, whoops!
Thanks again Chris and Debby. What you're doing helps a lot!
Thank you for sharing your journey. I found myself thinking about Debbie a lot as I watched. Her resourcefulness and commitment to help you make me want to hear more about her story as well.
I was diagnosed at 38 and it was liberating in a way. The dx explained so much, but now I'm like well my whole family is also ASD so it's not surprising I wasn't dx as a kid. Unfortunately as an adult with ASD/ADHD it's like "now what?" since accommodations aren't often provided for adults.
Diagnosed at 9 years old but it was the 1996. I just wanted to be like the other kids. So I have masked and ignore alot of my symptoms for a lot of things going on with me. Just now started to work with all my diagnosis not against. A weight has lifted off of me. Anger followed of wasted time, relationship, missed experience, etc. Now currently figuring out life.
A few days ago, was given the suggestion on your channel, thanks YT. I was diagnosed officially 2 years ago Sept at 57 as autistic. My oldest sister (and also likely 2 others, I had 3 older sisters, yeah, the baby in the family) and a long time good friend suspected I might be autistic as far back as 18-19 years ago, but it took a long time, a PT/temporary job in IT to finally get the diagnosis through DVR, Dept of Vocational Rehab.
After a 4 hour session, it came down to ASD, level 1 with a rule out for ADHD. I was in therapy and the first therapist began an ADHD test, but ended it after about 5 minutes saying it does not appear I have full blown ADHD.
I am not just autistic, but have CRS (congenital rubella syndrome), from being exposed to rubella in the womb, thanks to Mom having caught it during the pregnancy in 1964 during an epidemic of Rubella at that time. Titter was the congenital cataract in my right eye and it marked when I was exposed, which meant Mom likely got it during the 4th week of the first trimester, which is when the fetus is most vulnerable. That is, it could be a deaf/mute, brain dead, or still born. I was obviously not any of those, but was born with total sight loss in my right eye, partial hearing loss (the nerves between inner ear and brain) in the left ear, total hearing loss, outside of bone conduction in my right ear. Was thought to be "retarded" back in the late 60's, now formally diagnosed as having also an intellectual disability (2 deviations lower than my peers). Now autistic, but also gay and have a fetish. Complex feller aint I?
Anyway, as with some of us, I am engaged, can converse easily one on one. Even my primary doctor was surprised about that.
I grew up with a friend who lived across the street from us who had an older brother (about 2 years older than us) who was severely autistic, and in those days, autism was only thought of as severe, can't speak, massive stimming, grunts and pointing to let his mother know what he wanted etc, white, male etc. Anyone else that did not fit that "mold" was left alone to fend for themselves. Now, obviously, we know more than we did then.
Anyway, I have had to navigate through alot of this on my own in getting financial help as getting work is not my forte, and realizing that I may well be dealing with ageism at currently 59. Due to hearing difficulties, I read lips (thanks to the John Tracy Clinic, mail correspondence course back between 1968-1970) between ages 3-5, I can not only read lips but can be rather verbose.
These days, I have through help gotten off of mortgage forbearance, pay my mortgage, most bills, and have EBT (SNAP) for food and do OK, for now.
I can have productive days, then crash for 2 days and have had meltdowns (ask my washing machine as the side of the cabinet is bashed in, trying to get the cabinet to hook up along the bottom with inadequate room and now have a ratchet strap to hold it together)...
I do feel at times I'm not really autistic, but the signs are definitely there so I must be. Fortunately, I was raised in a loving family that loves hugs, having my back tickled, and love the feel of some things (leather especially) but love digging through a pile of plastic buttons. it's the sensory feel I crave. but I have a hard time with perseverance issues, meaning to get away from YT and get onto projects some days, or even to shower.
Anyway glad I stumbled onto this channel.
Thank you for your honesty. A very meaningful video. I had to remind myself this morning that I'm only 4 months into relearnIng who I am, and you said in a prior video that it takes, on average, a year. I need to be kind to myself, especially during this process.
Absolutely! You need to be kind and patient to yourself as you navigate relearning who you are and what you need to do
Thanks Chris , thanks Debby .
My adult daughter told me she thought she was autistic. Immediately, the vision of a nonverbal pot-banging dismissive child who refused to make eye contact or acknowledge his parents’ presence came to mind. Nope! That wasn’t my daughter! She said, “Mom! Google ‘female autism’”, which I did. I read everything.
Suddenly…I was like, “Oh!…MY!…GOODNESS!!!…I think I’m AUTISTIC!!…Maybe they misspelled it…maybe it’s spelled with an R, because I AM ARTistic!”
Once I accepted it, I went through the same anger. All the bullying from kids and teachers (one teacher picked up my desk, turned it sideways, dumped everything out of it onto the floor, slammed the desk back on the floor and yelled, “CLEAN IT UP!!” I sobbed as I picked things up, not knowing how to make it look clean, and placed them back in the desk while the teacher taught the class.
I WAS enrolled into the Learning Disabled program, so I did get some help. I feel like I did get my autism DX when I had to be tested before entering it he LD program…both physically and psychologically.
The psychiatrist said I was love deprived, emotionally immature, and socially … something (why can’t I remember that last word?!). I can’t recall what that label was. But if it were today, I would’ve got the autism diagnosis. This occurred in 1975.
But I don’t care about the dx. In fact, if I HAD been dx’d autistic back then, that would’ve confirmed what all my classmates were already calling me.
My husband had difficulty believing I was autistic until we watched a video of a 60 year old explaining what it was. Then as she would give examples of her autism, my husband gave examples of mine. He understood it. I was no longer a fre@k to him, I was me…the one he married…with a new understanding. Instead of him seeing me as a pot-banging person, he saw all the little quirks he married (like inability to throw away plastic containers or eating one pea at a time with chopsticks) now have an explanation. I’m still me, explained. He no longer just accepted me and my weird quirks, he understood me.
Then I recalled back when I was being treated for anorexia, a nurse at NIH mentioned my large protruding ears were a sign of a condition that kids below us were being studied.
I googled “autism big ears”, and found my next explanation…an explanation of every single medical and mental condition I’ve battled all my life…way back since before I was even born!:
Fragile-X Syndrome - the leading genetic cause of autism.
Fragile-X Syndrome doesn’t define me.
Autism doesn’t define me.
Autism and Fragile-X Syndrome explain me, which offers tools I can use to improve me.
Thank you for the rawness of this video 🖖
Thank you for such a brilliant and honest video. 🙏 it feels to me like post diagnosis everyone expected me to be fine because now I had answers, and they can’t understand why I’m struggling so much still. I wish I’d known about the rollercoaster of post diagnosis though knowing probably wouldn’t have changed it much.
I’m still riding the coaster, I’ve found self compassion/radical acceptance to be helpful with the anger and frustration at having to let so much of what I thought my life was, go. Dealing with trauma and grief over past events that might have been so different, I’ve been using lucid dreaming to help integrate the trauma and emotions which I’ve suppressed and masked for 40 years.
Hi Chris and Debby
Been really enjoying your channel and it's content! wonderful channel.
I was diagnosed autistic as a child (back in the 80s i think i was deemed High Functioning Aspergers) and masked for 30 years. As of Friday, I am currently working on letting down the mask and finding skills to help me live with my ASD. I am currently 42 and unmasking something that I felt was taboo to unmask since I was 10 has been scary. Not to mention the fear that comes with letting down the defenses that come with having a neurological 'disability' that people often times say, 'I would have never known' or ' you seem perfectly normal to me'... man that stresses me to no end... 'don't you realize that not all disabilities are physical and able to be seen??' The things that enter my brain and don't exit my mouth at the other person. But I digress....
I spent at least a year decluttering my home and i find that having less stuff has lessened the anxiety and overwhelm. I only have the things that I need and love. I also find that for the last 3 years I get up at 1230 or 1am and being able to bask in the peace and quiet of 1am helps me to be able to function throughout the day. I still get startled or affected with loud noises, but the time I get to recharge and do things on my terms between about 1 and 5am helps me a lot to be able to function in the 'normal' society.
Over the last five years I have written a book. historical fiction and fantasy of the last civil war of Japan (1868-69). This is the thing I have been totally into. I want to get it published and get an editor but am currently at a roadblock. Would you have any resources for a new author that loves the book she has written in order to get an editor and a publisher?
Also, I am currently trying to find some sensory objects so that I always have something in my hands to fidget with. I was wondering about the NeeDoh series. There is a cube, a gumdrop and a dream drop. Could you be able to tell me about what kind of firmness they have when you squeeze them? their texture? malleability? any noises they make?
Fun fact: one thing that has driven me nuts since i was a child, the feel of shiny paper that some books are printed on... and if someone rubs their hand or especially nail across said paper... shudders.
Not sure that I’d go on record saying that N*Sync is the most beautiful music I’ve ever heard, but thank you for sharing
So much of your story resonates. Thank you so much for sharing 😊
Thank you so much for your honesty, your courage in making change, your modelling of accepting success looks more like smile lines than the neurotypical world. support.
thanks for the (brutal but appropriate) honesty. it helps.