Autistic Regression in Adults: Life during Burnout
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- Опубликовано: 9 фев 2025
- Autistic regression is a phenomenon where a person with autism experiences a loss of previously acquired skills, such as language, social communication, or self-help skills. This can occur at any age, including in adulthood, and can have a significant impact on an individual's daily life.
In this video I summarize a bit of my journey since getting my late adult autism adhd diagnosis and what it's like to face Autistic Regression and Burnout.
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#autism
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the word you are looking for is complex-PTSD. theres no shame in dissociation. we have to learn how to care for ourselves and how to re-parent ourselves...re-learn how to exist in the world with our new identity and culture. we can be very proud of ourselves for staying alive.
All very good points. Thank you. ❤️
I do agree.
I was diagnosed as autistic at 61. I have had to relearn how to do so many things and it has been scary and difficult. I have had to relearn how to manage my finances as the old way didn't work anymore. And I have had to relearn how to do things like picking up stitches around the neck of a jumper I was knitting. It's been like having to learn these things in a foreign, yet familiar language, while the old ways seem familiar, yet foreign. It has, and still is, a strange and confusing journey. I go through weeks when it is particularly difficult and challenging, and I am sure I will never get there while other times it all just seems to fall into place quite easily. Hopefully the good times will get longer, and the not-so-good ones will get shorter.
It really amazes me how much we have to relearn. It feels like nothing has changed and everything has changed. It's so good to hear that others are experiencing the same thing though and that it's not another thing "wrong" with me.
Thank you so much for posting. I'm 56, and very hesitant to think I need to get a diagnosis. I'm a work in progress...
"And I have had to (...) jumper I was knitting."
Why did you have to relearn that? What was wrong with the "old" way?
@@knrdvmmlbkkn The old way just didn't work anymore. I had to reframe the way I looked at things, and how I processed things. When you change how you view things you also have to change how you respond to them. So this meant I had to relearn how to do some things such as picking up stitches around necklines.
@marthaneale2434, I am only a year younger than you, and one thing we may forget is that the world we live in now isn't the same as the one we grew up in. Even a few years ago, before the "cataclysm" (as I call it), the world was different. So many things just don't work the way they used to, and when you have autism like we do, it makes it all that much more difficult.
Thank you. I got a diagnosis after i burned out and became suddenly flooded with autistic symptoms seemingly out of nowhere. I was 40. My aha moment that lead me to getting a diagnosis was a full scale terrifying meltdown… which happened because i thought i was having dinner we my mom who i was visiting and then she told me that she invited my aunt (who i love). I wasn’t even really upset! Not rationally. But i couldn’t stop it, it was a full blown meltdown.
Now im 43 and, even though ive had experiences of such pure joy since my diagnosis… ive also been in and out of shutdowns since. I cant believe how complicated this has been emotionally. It is so so important for me to see videos like this. Im a 43 year old woman (not named tim… that was a joke but i never changed the name even though i no longer care about the joke) . I appreciate all the content on line right now by autistics, but there are things that are specific to people in our 40’s. Especially those of us who are actively working through trauma at the same time as having a recent autism diagnosis. Niche, haha. Anyway, thank you again.
Burned-out and just one year away from my 40's, recently got the diagnose myself, I feel this comment so much. My counselor asked me today: you want to get to the trauma first or autism-education? Men I don't even know where to start, since only taking a shower causes me to have a meltdown! You're not alone. It is a hell-hole, isn't it.
I have tears in my eyes. I feel like, in a lot of ways, I could’ve made this video. Your words have been heard. You have been heard.
😔❤️ Thank you. ❤️❤️
yeeeesssss another wacky Lisa!
I'm not a hugger, but I just wanted to give you hug and say, "It's OK." Unlike popular scientific opinion, a lot of us ASD folks have more empathy than you can imagine, but it's so overwhelming that we often have to shut it off, so people think we aren't empathetic. I can feel what you feel.
Yes, I wish more people would understand about the empathy.
Exactly. We are not robots. We can feel and empathize deeply, but we don’t necessarily show it.
Exactly. I'm not gonna show it all the time. If I do, I'll look like a toddler craying for everything.
Chameleoned ourselves into neurotypicality... truer words have never been used.
I'm 56 and recently diagnosed as autistic and it explains so much.
I have this idea of the old paper dolls and how we dressed them and that is a metaphor for me trying to fit the pattern card of normal.
Burnout, how I remember you, and I wish your after effects would just go away.
I love the paper doll analogy. Which is the doll that just has friends and fits in please? I'd like to play that one for once. :) Glad you got a diagnosis and some answers.
On a very positive note, I absolutely love hearing your dog snoring in the background. I’m watching RUclips on my living room tv, and the whole time I’m watching this, it sounds and feels (subwoofer) like I’ve got an actual doggo napping behind the couch or something.
Wow, I don't think I even heard that. He was sleeping in the room and then I did hear his clippy cloppy nails. Those nails are one of my most frustrating sound sensitivities.
Yup 😂 like my late dogs. Miss them.
I was constantly pausing the video because I thought it was one of mine snoring so loud 😆
As time goes by, I feel less & less capable of doing things I once was good at too, but because I'm falling more & more behind on everything else & it all takes too much time& thoughtful. Likeirganizing my backpack for fieldwork. I'm a scattered mess who often takes too much stuff & it gets in the way of my workday just trying to keep up. Themore I'm stuck in this negative grossly disorganized state, the more it's obvious y everyone else to where I can't do the masking anymore. I'm too mentally spent even after the very basic everyday life stuff, let alone the social. Then add to the mix, im at least 20-30 years older than my current coworkers & have a completely different lifestyle & value system, lifestage & perspective from them. Getting older (52) I'm now becoming physically exhausted from all the mental stuff!
Hello~ We're an autistic dissociative system. Our previous host just burnt out recently due to constant masking and just the trauma of everyday life being Outside (as opposed to staying in the Headspace with us), and I didn't realize it until I watched your video. So I wanted to thank you for speaking on it. You're doing such an incredible job. Continue living your truth and seeking and giving support
I can imagine how difficult it is for a system member to be outside for longer than they are uses to. I hope the previous host is just temporarily dormant and will be able to come back. I'm assuming it's dysregulating for the entire system to have a host change. Sending virtual hugs and support. ❤️
Im so burnt out. Single parent of 2 adhd autistic children. No support. Just people you are waiting to take children away if I slip up. Every day Hurts. Thanks for the video ❤
❤️❤️❤️😔
I'm so sorry. I hope you find support on your way 💞
I see you too. Thank you for taking the time to put this video together. I was diagnosed at 58 and it turned my world upside down. But then I realized it had always been upside down and I was just seeing and acknowledging it for the first time. And that has been a very healing process. ❤😊
That's a lovely way to look at it. I'm so glad to hear people's healing journeys.
This video made me cry, but in a good way! I'm 28 with inattentive ADHD as well as being unofficially diagnosed autistic. I relate to you so much, I even have similar sensory struggles to you. Thank you so much for making these videos on adult autistic regression! I've been experiencing it for the past few years and though I've suspected regression previously, I haven't seen enough relevant, relatable, and accessible sources of information about it to feel like I could confirm whether it was actually what I'm experiencing or not. Please keep making videos like these, and on your experiences of your other conditions, you know precisely why we need them. I see you too.
Thank you. ❤️
Thank you!!!! Im 38 and I feel like (for lack of better words) am getting dumber and I am intelligent. I was at school. I need all the info to understand why things are the way they are. I feel like I need to be perfect. Hate clutter. Crowds exhaust me. I zone out and get lost in shops. I get so overwhelmed and run down and have to have mental health days from work I say I’m “sick” I’m not. I’m exhausted. The adrenals pack it in from pretending. People my whole life telling me “don’t hug eb she’s not a hugger, you’re too sensitive, you’re depressed” I don’t know who I am anymore. I need a diagnosis so thank you for telling your story. I appreciate you ❤
@ebeb657 I have all those things, too. I feel your pain; I went through years of it myself. Still going through it to a large extent. Keep watching Amanda's videos -- they're wonderful validation for what we're going through. Please know you're not alone, and you're not "weird" or "defective" -- you're autistic. ❤
The eyebrow thing is NOT a little thing. I discovered by watching myself in a mirror that I looked more "positive" when I raised my eyebrows about a year ago. I tried to do it, and just couldn't maintain. I appreciate your vids SO much. Since finding your content about a week ago, and realizing this may be a "thing" for me, I don't feel quite as exhausted. I actually may have "hope". Thank you.
❤️❤️❤️ This warms my heart. We all have a lot to learn from each other.
My therapist helps. I just talk about my challenges and get some validation and some advice/tools for how to move past them. Perhaps the effectiveness is in question, but I am not discouraged about it.
I think a big thing recently has been all of the recent events. They have added to overwhelming feelings. Everything has become so exhausting, managing through the pandemic, being sick with it multiple times, and having significant after effects... I just basically broke down from it and can't get back to where I was. In part, I don't care. I still use my mask, it is a valid tool and it helps me to be highly effective at work. However, when I am done, it goes off rather than just being the persona I always present.
I had a period of time about 14 years ago where I was letting the mask go because I felt comfortable being more myself, and I didn't even know any of this was happening. But then I learned of a lot of chatter behind my back and I put it back on.
I was just thinking earlier it seems like since the pandemic everyone I know is still in crisis mode. And like you said, just so much going on in the world. Global crisis and personal ones all Mashed together. Therapy had been such a wonderful tool for myself too. I'm so thankful I started with a therapist actually right before I learned I was autistic. I sure need her now. I'm a bit more aware of when I'm masking and not, but not always. Sometimes I slip back into it, and dissociate before I realize it.
I wish I could just sit down and talk to you, because these words resonate with me so much. I feel like we’re the same person ❤ you are so special, Ty!
I totally understand you, I also have days that even getting in the shower is a big effort and lately I have been overthinking cause I have been all my life jumping from one job to another, im very thankful that I found your channel ❤ you are a very strong women and a great inspiration for many.
❤️❤️❤️
@erievshelsea2452 Thank you!! I *hate* taking showers, even though I know I have to. They are a torture every time -- getting undressed, stepping in and feeling the shock of the water (even if it's warm), having to go through all the shower rigmarole, then having to get out dripping wet and cold, clothes velcro-ing to your body because no amount of towel-drying really gets all the water off, the feeling of clothes on a not-quite-dry body, wet hair.....ughhhhhhhhhhh! And it feels like it takes up time I could be doing other things. Hate it.
wanted to thank you for sharing this. It felt so eye opening hearing this all said out loud by someone else.
Glad it was helpful!
I feel you. I relate to enough of this that it’s kind of uncanny. Please know at least one person understands a good bit of what you’re going through-the countless nuances of processing this effective rebuilding of your identity from the ground up.
Exactly, building our identity from the ground up, while still trying to maintain a life you created undiagnosed.
Late diagnosed at 47. Thank you. Your content helps. Wishing you peace and all the things you need.
Thank you for commenting, I always love to hear my content is helpful. ❤️
Thank you. I feel so validated. There were so many me too moments in your video. I am 52, was diagnosed 6 years ago.
I feel for you. I understand what it means to push through. I have always pushed through. It makes us strong, but it also hurts and makes us not able to do a lot else.
Thank you so much for this. I got diagnosed with autism on May 4th 2023. I'm going exactly through what you are sharing here and nobody understands. Except you. So, thank you for this ❤️
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Totally get the eyebrow thing! Something that helps me is to gently pinch them to help release the tension in those muscles. Kind of like trigger pointing that area.
I so appreciate how you have been able to put this all into words Amanda. Especially the bit about feeling like you were doing the things your peers were doing and not getting the same results and being like, what am I missing, what am I not doing right.
Yes, that has been an ongoing struggle and even with my diagnosis it's frustrating because now I know it comes down to being autistic in an ableist society.
Thank you. I suspect autism. I spent so much of my life trying to be perfect as well. Other poor coping mechanisms coupled with obscure stimming sounds or clicking a pen impulsively. I like when you don't edit, it helps me relate and feel seen.
I'd love some tips on creating content. I've just dipped my toes in. Not on RUclips though. Not sure where to start and get overwhelmed and stuck.
I'm sure I have ADHD and I have a lot of other medical stuff. I believe I've had some regression. There are tasks I don't know why I can't do or initiate in the ways I used to and get stalled. Thank you for your content.
I was told too often to fit into the box or don't do this or that because it wasn't socially accepted or 'normal'. I realize on some videos I made on TikTok I tend to glance off to the side a lot and can't control it, but it's like I'm grasping for my thoughts.
I think tiktok is a great platform to be on. Yes, you probably notice I look off screen a lot. If I look at the screen it's more scripted or stilted (usually.)
Perfectionism is a coping mechanism!!
Thank you for sharing
I feel this Amanda. What you said about needing to be perfect and having no gauge for in between, me too. Thank you for putting words to that for me. Take care of yourself ❤
It's always been all or nothing. A few years ago I started adopting the phrase is "Done is better than Perfect" but it's a struggle to not do something to full completion or just not at all.
@@i.am.mindblind yesss!
I think for me this mentality is one of the reasons I’ve come as far as I have. Because not doing something because it made me uncomfortable was not an option. I never came first. Other people came first and my all or nothing thinking came first. It was non-stop gaslighting.
Okay this is like the 3rd or 4th video of yours that I’ve watched- and I don’t know how in the universe that the RUclips algorithms matched me to you- but holy crap. I find myself like nodding along and agreeing but then you say that one thing (like the eyebrows) that I do the exact same thing, and it just hits on a whole other level. I am so grateful you’re a content creator.
😊❤️ Aw, thank you. ❤️❤️❤️
I've been going through it recently, it's why I'm revisiting the inconclusive diagnosis I had from about 15 years ago. I hadn't felt the need to care about whether I was outright autistic or if I just had a significant number of severe autistic traits. But, with the mask being kind of forcefully pulled down due to burnout, it seems like it's time I just admit that the masking isn't doable for much longer whether I like it or not.
Yes, it seems like I should just be able to carry on as always, but that isn't the case. My mind and body say now is the time to heal. Glad you are here and taking time to explore what you need too. ❤️❤️❤️
45 going through it now..lost everything..the weight of the world on our shoulder.noone saw us. we've gone under the radar.its reall now .. We're here now .survived it all..tried everything to cope..total meltdown..it took these last 4 years to break the mask.."no more masking"were on the spectrum . Its a wonder im still alive.. I don't know how I've got so far in life undiagnosed..all the shame,self lothing, depression, self medicating, conforming,lord help us😓🙏
Thank you for making so many of us feel seen
What you have said I couldn’t have put it any better. Word for word that’s my life. Only came to light when I realised my son was nonverbal and autistic I hit total burn out. I am just started to heal my whole being and re wire myself to be authentic. So much ptsd. I am still at the grieving stage of the years that I have lost to masking and I cry and get angry a lot but now at the age of 32 I am starting to heal
Sending hugs. ❤️❤️❤️
You're the first person I've ran into that explained life the way I have lived it. Always putting everyone else's needs and feelings ubove my own. Actually my needs had never made the list. I've kicked most of my life tailoring myself to others. In my late teens - early 30's I couldnt figure out for the life of me why i was always so unhappy, sad, depressed, crying, anxiety filled, etc. It's such a relief to know that masking is what this pain boils down to.
When I first realized about the impact of masking, along with other things that have pointed to autism, it was like an epiphany. Suddenly I felt as though I could breathe. Over the following 2 weeks, coming to this realization, I had started dreaming about past events and was reliving them as an autistic person. It felt amazing to finally have an understanding of what the hell I had gone through all of these years. Life makes so much more since. Now I get to reexperience everything all over again from my angle and not everyone elses.
I don't think my comment went through. Having the autism realization is such a game changer. It's a emotional roller coaster with lots of highs and lows. Sending hugs ️ ❤️
I was diagnosed about 6 months ago, but I realized I was autistic a year before that. So I am about 18 months into my autism journey It is complicated for us because we are all a little different. We have different deficits and different strengths. I am dyspraxic, my IQ is below normal in some areas, except there is one area in which I am gifted. I am gifted with language. My autistic interest was words as symbols, I would read the dictionary to learn words I didn't know. I am highly skilled in my ability to communicate. This has made it very easy for me to fool people into thinking I am "normal". When a person is gifted in an area that is so forward facing, like an ability to communicate, it hides their deficits. I couldn't open a keyed door until I was an adult. I had trouble learning to operate machines. I work hard to overcome these deficits. I push myself to put together furniture from IKEA, for example. But I am extremely stunted in some ways. So people get to know me and they think I am lazy, or that I am a dingbat, because how could I be so articulate and yet so stupid? It has really messed up my work history, some of my relationships, etc. I have begun to avoid people because of the autism diagnosis. Which is sad.
I had a yard sale recently, and my son was listening to me talk to "customers" through our front room window. He said it was so strange because I am exceptional at selling things, small talk, upselling things to people by figuring out what they need, basically I am an excellent communicator. He said it is weird because I use my autistic bluntness in a way that cuts through crap without offending people, and the reason I can do that is I think about other people's needs more than I probably should. But this "excellent communication" is so expensive. I had a sales job at one point, and it destroyed my health. I haven't socialized much since I quit doing that and it has been a decade. I can still communicate at a high level when I need to, but I dread it and it is exhausting in ways I don't think neurotypical people would ever understand. And I think that is because to mask I have to constantly watch other people's body language and interpret it quickly because it isn't natural for me. I would rather be in my own head and not thinking about other people at all.
Yeah, I also have strengths in some areas and strong deficits in other areas. I'm very smart but I'm also useless at filling out medical/government forms. I over think each question. I also am really good at selling things, but only if it's a product I really like.
I know this might not mean much, but I am so proud of you. You have fought so hard to get to where you are and its inspirational to see. You are seen and heard and your feelings and traumas are valid. Thank you for showing your realness of you and in your channel.
It means a lot. Without comments like this, I don't know if I'd keep making content. I appreciate so much hearing that my videos have helped people and I'm learning so much from all of you too.
Thanks for that; much to think about. Processing the past: I never know where to start. I'm 74. The guilt! The forgiveness! The feeling of having got it ALL wrong. Starting anew with each day. I have a feeling you'll do fine. But thank god for the auties, eh?.
It really is frustrating but all we can do is start from what we now know. It is so hard to get caught up in the what might have been. 💚
@@i.am.mindblind Yes, you're right; but I have 74 years of that stuff to start from. But I have now decided that my experience might be of use of others (also, my son and grandson are autistic), so I am going to follow your lead and start a yt channel All the best. Peter..
Omg this is so validating. I too always block out/choose to not pay attention to my surroundings. I feel like its the only way to get through the store, event, the park, etc. in one piece and decently mentally sound when the other side is reached and the activity is done. It's always the other person who's with me that will bring up, "everyone keeps staring at us" or "mom these guys are following us" or "hey, your friend just waved at you. You didnt see her?".
Just the other day it was my daughter telling me that a couple men had kept following us around Wal-Mart and giving her intense looks that made her really uncomfortable. This made my heart sink. Just knowing that my habit of protecting my own emotional wellbeing placed her in a bad situation where I was not aware of our surroundings makes me sick to my stomach. Now I'm wondering if it might be helpful for me to view masking as a type of survival tool.
It's really scary in retrospect how much I tune out my background to protect my senses. My kid also is hyperaware, maybe because I never was. 😭
The Autism realization is such an emotional roller-coaster. There are many ups and downs. Sending hugs.
I was diagnosed last year at 43 years of age. I"d been seeing a psychologist for 4 years due to cpstd, depression and anxiety etc. But last year it got so bad that I collapsed and couldn't do abything. The context of everything I wrote was missing, i forgot passwords, misspppelled everything and scrrwed up things that I've used for years l Iike nsvigsting websites, remembering passwords etc.. I had chronic insomnia and i was beyond physically exhausted.
As a result, I was sent to a lovely psych ward (the opposiite of what you see in the movies and who only admit volunteer patients). Anyway, it was here that I met my psychiatrist who asked me after a discussion if I considered that I might be autistic. I answered no (ehich was the truth) and i ddint want to discuss it any further. But he wouldn't let it go and finally my other medical professionals started to agree witb him (I'm high IQ and high functioning masker) and I was sent to a psychologist who specialises in late diagnosed female patients. Did four days of intense testing and came back as Autistic level 2 (auto qualification for disability access) and also ADHD. I Also have a severe, incurable pain condition, which has made it more complex. Fortunately i have a fantastic medical team who are incredibly supportive and keep in contact with each other. Sice my first psych hospital admisssion. I've had another 4 or 5 (some up to 8 weeks long) to help me have a break and to learn new methods of dealing with this.
I would not advise self diagnoses. I know a number of people who did this and it turned out their assumptions were very wrong and to their detriment.
I am currently considered to be in severe burnout that currently shows no signs of easing up after 12 months.
Shit sucks!
I think medical diagnosis is important because some things are similar to Autism and may have successful treatments that improve quality of life. On the otherhand unfortunately, it's a sad fact many people don't have access to medical dx and if identifying as autistic and finding self accomodations and community helps, then that can help some people. If it doesn't help, hopefully next steps can be taken. Glad you are currently in a better space and hopefully continue to be so. ❤️❤️❤️
Duck, my heart goes out to you. I am a retired psychiatrist. My colleagues who are good psychologists have excellent tools. 30 years ago there were few tools to recognize these conditions.
I am high functioning Aspergers Syndrome. Never diagnosed because I was born when it was not recognized and as I was in my residency, I decided it was better to not draw attention to me. I functioned with all my "problems" masked. This was a lot of energy. However, it made me a better Psychiatrist. I spotted problems in others quicker (more accurate diagnoses) and helped my patients find solutions to becoming functional in their personal lives. I had stronger partnership with psychologists and neuropsychologists to help. I looked for underlying medical causes.
So I am happy for you that you have some answers and have a plan. I desire you get more out of life. Remember to be thankful for what you have and not concentrate on what is not possible for you to acquire. I wish you peace, happiness and success in your endeavors.
I admire you so much for putting yourself out there. I don't have the guts. You'll probably never know how much people you're helping with your videos 😘
Told my family yesterday about my diagnosises. My goal to tell them was to free myself from the burden of questions like "Shall I hide this info, What will they think, Will they treat me differently?" and to own my diagnosises. Starting to unmask, because there will be no reason to mask anymore!
Also I told them about the regression in skills I experience. This was thanks to you, because your video was the first time I heared about regression and finally understood it was all part of my autistic burn-out.
Take care 🙏
Always knew I was highly-sensitive, only recently to find out this is part of a bigger deal: autism. Officially confirmed: AUTISTIC BURN-OUT. 8 years of misery, body completely broken, ruined fight-flight mechanism, too long too many stresshormones, the whole shebang. ⚠ I advise everyone if you doubt you have autism to get the right diagnosis a.s.a.p. Find a place where they understand female autisme and not dismiss you. I think my body will never recover completely and no young girl deserves to go through this experience. Love to all of you out here going through the same experience. And thank you só much for making this video, also for responding to my questions in a comment under another video of yours. ♥
I'm now very passionate about bringing awareness to Autism so more people get diagnosed. It makes a huge difference to understand how to regulate vs dissociate. I try to respond to as many comments as I can, I'm glad I was able to get to your other one too. 😊❤️😊
Ahhh, I just want to give you air hugs, thank you so much for finding the courage to do these videos and share your experiences. I see I still have much to learn myself. This is tough, please be kind to yourself.
Thank you so much for your kind words. I am aware you don't know me and my current situation but I had the feeling you where directly talking to me. Thank you.
❤️❤️❤️ I'm glad you felt seen.
This hits home and reflects a lot of my own experience ❤
Hi Amanda, thank you so much for your video. I am 47 years old and I got my Autism diagnosis this year. I had written down a few questions for the last appointment with the psychologist who diagnosed me, because I was told there would be room for that. But then this was not the case. I had my questions and she told me she could not answer them, I should do a cognitive behavioral therapy and there would be room for my questions. Have not done this yet, but I know what you mean when you say that you are left alone with the diagnosis. And yes, once you have realized that you were masking for so long, you can’t just go back to that.
thank you so much for your videos! So much understanding and insight comes from listening and watching what you talk about.
Thanks Amanda this was very helpful and I feel your struggle. I'm 58 and it's hard in so many ways.
You talk how I feel I talk, like your train of thought, thinking or processing more before getting the words out.. for me tho, that’s when I’m talking well, I’ve regressed so much as an adult starting slowly from mid 20’S
I'm in a similar situation. 53, male. I think it's called autistic catatonia. And it better not get misdiagnosed as early-onset dementia, because antipsychotics are contraindicated in catatonia. Hastening catatonic decline would only seem to confirm the misdiagnosis so surely this is killing autistic people. Dementia may be psychosis, but katatonia is fear...... And undiagnosed autistics are well-justified in having it. Catatonia can be differentiated in 20 minutes by lorazepam challenge.
If there even is an early-onset dementia it is schizophrenia. The geriatric dementias are obviously egodecompensaty regression (to incontinence, dependency, and inability to encode and contextualize new memories in more than an implicit emotional way) in undiagnosed psychotic and neurotic developmental fixations (so primary psychopathy and NPD).
lt's been a long imperceptibly slow slide. I was diagnosed sometime between ages 9 and 11. The kind of parents who would hide this from their kid and use it against me in ways like showing back up out of nowhere when I didn't need want or ask for help and partnering me in business to someone who just used me to complete jobs he had collected deposits on and couldn't finish...these are parents who used me for their own self-regulation. That one showed back up so he could take credit for my efforts and get paid for his trouble. This was a business involving my autistic special interest. He didn't have any interest in it or understanding of it or knowledge of it and like I said I didn't need him. He tricked me by telling me he didn't understand the language of fatherhood but he understood the language of business. If I'd succeeded without a babysitter it would have threatened his ego, simple as that. Autistic gullibility WORKS for these kinds of parents.
Everything in this video is ringing true , I don’t know how I came across your channel but I am so happy 😁keep it up, you have so much content !
Haha yeah, social media content creation is a special interest hyperfocus. Creating Content makes me very happy.
OMG. I also had that realization about my actual masked face, the effort of maintaining the mask causing intense pain and fatigue. It was Christmas day, just 6 months ago, at a friend's house, after singing in the choir for a midnight service the night before and not sleeping well. My burnout was 9 and a half months pregnant and ready to hit hard, and I went to their bathroom and sat on the toilet and had this lightbulb moment about my full-face pain that I only get around essentially unsafe (for me) people. I actually think that was a turning point in my starting to care MORE for myself than I did for others and their opinions and their assessments of my acceptability. Thank you so much for this video and for your experience, prompting this realization and so many others.
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The struggle you have everyday, to get thrugh, i need to ask what it is about - I see so much of me in you! I can relate 98% and i adore your awesomeness (its very brave to make this puplic video❤) Im asking because maybe, if I understand more about the struggle, I might be able to give you some handy advice ❤❤❤
12:45 autistic women _tune out_ their surroundings, putting themselves in danger.
I have been realizing that this is why I can't do classroom management very well, and can't seem to learn it either.
When children get loud, I shut down instead of call it out. When I've been able to call it out, it's angry and snappy and demanding, like the adult version of putting my hands over my ears and screaming.
It's not the calm firmness and commanding authority a teacher needs to have.
And though I love the teaching itself, sharing ideas, and being absolutely encouraging and building someone's self esteem...I can't keep a classroom in order so the children have a quiet safe place to do their work - I can't create the atmosphere they crave.
I think it's ironic that teaching is both an amazing job for a lot of autistic people and also a super hard one. A lot of us love teaching, but the sensory experience of being around children is definitely overwhelming!
Thank you for putting yourself out there. Your videos have helped me on my late diagnosis journey!
I'm so glad to hear this!
Thanks for mentioning eyebrows! Lots of people talk about thinking about making eye contact, but I get so preoccupied with what-should-my-eyebrows-be-doing-right-now.
Right?! It's so funny but true.
Thank you so much for sharing, Amanda.
I've been in burnout for years now, and I'm starting to give up hope. It's really taken a toll on my mental health. I was diagnosed later in life as well.
It's hard. Burnout is really hard.
The masking causing the fight or flight mode is absolutely true and happened so much to me.
OMG! You are so telling my story about high-masking to get along and get by, but still feeling like I didn’t fit in, still stupid. Everyone knew what “ it” was except me because I wasn’t smart enough (pretty enough, popular enough, you know what I’m getting at here) figure out what “it” was.
I see you too Amanda. I was a chameleon for so long. It’s really a long road processing a late autistic diagnosis. I was diagnosed almost 10 years ago at almost 47 yrs old. The last few years have been especially rough. I think menopause is making a lot of my particular issues worse. 😞
My mom asked me to give her examples of how I mask. So much of it's automatic after doing it for 55 years, that I can't just pinpoint examples of it. I can't do it as well as I used to either though. I can't do anything as well anymore, and some things not at all.
Find areas where you are doing things because you feel like someone else expects you to not because it's what you'd really want. That's part of your Mask. And it does hide from ourselves. Our brain was protecting itself even from ourselves.
I am in my mid 50s and only just discovered that I am autistic. I am trying to work out what masking is, what I can drop, and what is safe to keep. I have tried to be good all my life too, and taken on many many uncomfortable roles and tasks time and time again with the false hope that time and practice will make it easier. But it’s just not true. I have been off work for most of the year due to the biggest burnout at work following too many changes and unrealistic expectations (throw in the pandemic and menopause too and it’s a wonder I can achieve anything some days). I am on a path to recovery but didn’t realise there was a possibility of permanently losing skills (and tolerances?). It’s a learning curve. It’s a tough road. We can only do our best, and we need to be gentle and generous to ourselves.
The best way to unmask (where it is safe for you to do so) is to not force yourself to do things that make your nervous system go haywire. So if a friend invited you to a loud restaurant (assuming you have noise sensitivity) to unmask you might suggest a quieter place. Find ways to accomodate whenever you start noticing sensory triggers. ❤️
Thank you for sharing
Although I have recently split up, very upsetting, I still feel I need to tell the person about my condition. It feels important that people know me. Like unfinished business. I don't know what to expect, and I'm not sure if it's a really reckless idea.
ASD and ADHD, opposing forces even within the same sentence...
Those opposing forces can be so hard to deal with.
I tried to talk about my last sensory burnout to my doctor to get a reference to the specialist. I had a burn-out that lasted days where I was all alone with my kids to take care. I couldn’t be happy, I couldn’t be sad, I felt disconnected, my body was like on cruise control mode . I know it was sensory because of the noise level, the artificial lights and smell at work. I’m conscious of it now that I get treated for ADHD. I realize some burnouts were ADHD (from trying to focus so hard all the time) and are not longer there and some burnouts are sensory (and remain). Masking is like a match to both. My doctor doesn’t want to refer me. He thinks I have managed to have a good life so I’m on the spectrum but I’m not autistic… What the heck does that even mean? How do we get family doctors to refer to you to the right doctors if they don’t know about the condition? I quit my job because I couldn’t take it anymore. I had to go to a different place part time.
Completely relate to everything you've said
Thanks for bringing up the tuning out background 🤯bc you just put words to what I do too...
Yeah, I thought I wasn't that sensitive to sounds until I realized I was using a huge amount of brain power to tune out my background.
Omg, this helped me so much. Thank you.
You're so welcome. It's good to know we aren't alone in this, if nothing else.
I lost my hair twice from burn out, and yes regression, feeling like ive gone backwards... its like going back to square one after starting to recover from a big burnout X
Sending virtual hugs. I hope you have support. 💜
Im going through a burn out right now, i had one about 5 years ago as well but i didnt know what it was. This time ive found myself unable to do most things. The only thing i have energy for is to take care of my basic needs like cleaning up and showering and thats mainly it. The only person i can spend much time with without just immediately crashing is my partner. I dont think he knows that im going through this right now either but its hard to discuss because hes going through his own struggles right now as well. I really feel stuck right now bc i dont have any support for this and im being pressured to continue with my life but its very hard just simply functioning at the moment.
It's hard when your partner doesn't understand. If it's accessible to you couples counseling can be helpful, especially if you can find an Autistic Affirming one. Sounds like he needs some supports too. ❤️
❤❤❤❤thank you so much 😢
Wow I absolutely relate to the bit at 4:18 to 4:58. Even very recently, even though I was actually diagnosed when I was 10, which was 26 years ago. I guess I kind of forgot about it and thought I was near enough normal :/
You are brave.
You are free. There is a relief that we feel when we give up…give up the mask. It includes loss but its a huge collapse to rest once it is known.
I think no gets this like other autisitic woman late diagnosed …
Its a jaw dropper: Oh! It was autism.
I never got a diagnosis. However at the time of my burnout it was apparent something was going wrong that Google picked up on it and started recommending youtube videos of "My late diagnosis of autism as a woman".
Yeah. My GD algorithms picked up on it when I had no idea what was going on. That said most of the rabbit hole was women constantly being told they didn't have autism when they actually did. Anyway it's been hell since then. I had quit my job. The job I tried since then I was exhausted by 11. Got home, barely had the energy to throw a premade in the oven. My husband had to come in to wake me up to make sure I ate. Then I'd go to bed. Rinse and Repeat until I quit that job a few months later. I'm currently trying to freelance as an Illustrator but I spend most my day sleeping. I don't get to go out and do the things I used to do because I now have sound sensitivity that make it incredibly difficult for me to tolerate. Oh and I have meltdowns so much more now.
Going off of bias here but from my husband telling me that he had been diagnosed, but not really because they didn't think autistic people could have a high IQ which he does and all the stories of women not getting diagnosed because, "You're too pretty" or XYZ or because I could always ignore my sound sensitivity and never realize it was a problem until after my burnout, what good is a diagnosis anyway?
Diagnosis isn't for everyone. But for me it was validation and now working towards unmasking and understanding my sensory needs more. Hope you are doing well now.
I relate a lot to a lot of this thank you
Im very much relieved to come across this phenomenon of regression - im now 61, and discovering that things i used to handle easily i now struggle with. I've wondered if im just "becoming more autistic"? I am fairly certain my confidence is down on the floor now anyway, after several very damaging and dysfunctional relationship breakups.
Is it generally true that having a relationship is near impossible for autistics?
I've been married for 20 years. We've had a lot of ups and downs and worked through many communication issues. I know a lot of happily partnered autistic people, but I think therapy and communication are key to successful relationships no matter the neurotype
Great question. Personally I had (and currently getting out of) one long damaging relationship, but I too worry.
If Mind Blind sees this are there resources/online or in person groups, etc for the other partners?
Some place where they can get the support and information. Along with swapping stories. I know I’m not easy.
Surely there’s some place for them to go and say things like, “… then the 4yo dropped his fork and she was done, at 8am. Spent the bulk of the day in her closet.”
“Oh, I’m sorry. For what it’s worth my guy called out sick last week, because he stubbed his toe getting ready.”
Many people with autism have communication issues. Reading facial cues is a common problem. The normal people take this skill for granted. So many functions in social interaction depend on this skill.
I am a retired psychiatrist; but also an undiagnosed Aspergers Syndrome individual. My mother knew something was wrong with me but in the 1950's no one knew what it was. I was not giving her eye contact from birth; this is typical of those on the autistic spectrum. She held my head to talk to me often up to 7 yo. She softly required me to give her eye contact because she knew this was normal communication. She made sure in high school I take both speech classes they offered. I followed her advice in college to take as much speech classes as I could. My speech instructor once aske me why I was taking speech classes since clearly I was not that good at this. So I explained my history and said something is wrong. It is the only solution my mother could think of. I also took linguistics and the psychology of language. I learned from other areas of communication in zoology. I am an animal whisperer. Mixing all of this together helped me tremendously, which in turn helped my psychiatric patients.
Just do not give up; find solutions with what ever skills you can develop. There is more than one way to communicate. Yes, it takes energy (at time huge amounts of energy) so take frequent rests.
Federal law requires me to tell the reader any medical information I leave does not make a doctor/patient relationship. My intention is educational. I do not intend to diagnose, treat, or cure any illness, disease, condition or disorder. I wish all to function as well as possible.
I've spent my life going out in the world and "tuning out" all the horrid music, noise, conversation, smells, lights and feelings. I've always hated them, but I thought I had to just soldier thru cuz that's what normal people do. And that's probably why after a week out in the world "being normal" I need a week of sitting in my chair staring at the TV and not speaking to anyone. I'm trying to be gentler to myself, but that's hard to do when you don't even realize that you're masking
Yep. It's why I think diagnosis is so important. How can we take care of our sensory needs if we don't realize how stressful they are and it's not "normal" to be so drained.
Its.hardnto say how I've changed since diagnosis at 42, 7 years ago. I quit drinking, stopped dating,.and hope and self esteem has been a.mixed bag, yeah, maybe I'm too old for diagnosis to change Me very much, though I know soo much more, good video.
Everyone will definitely have a different experience. Did you consider yourself high masking before your diagnosis? I've heard a lot of undiagnosed autistic people used alcohol to cope with social situations.
@@i.am.mindblind I used it that way at family gathers yes, a lot of alone binging too though. Sophisticate people knew I was autistic, very blatant vocal stemm always.
The burn-out, possible depression, this diagnosis doesn't fit, let's spend months researching, it's almost certainly Autism & ADHD took 3 1/2 years. I am self-diagnosed, as I am so bad at conversations & interviews that I feel attempting to get diagnosed would be impossible. I'm in my late 30s.
Were is the first part video?
I talk about Regression here, but they really are independent videos. ruclips.net/video/jY6jgwTqfZM/видео.html
Relatable
And I, see, YOU. 🧡🧡🧡
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Yeah. I have massive burntout or shutdown. For example: I'm sitting in the garage and my son fell from the bike. He started crying. The dude is accident prone. I'm not getting up. He's been getting hurt since he was 9 months old. So, the little neighbor boy saw and came to help him as if he was mega hurt. He's not. I'm my head: he fell, for the 100th million time. Big deal.
My husband caused this meltdown /shutdown. His lack of autistic understanding. I was ready for divorce for the second time (in my head). He can a huge a hole. I'm like listen jerk, i process things super slow. But yes, having dinner ready, clean home, perfect kids (stupid Hispanic culture).
Now, my body is full stop. I dont give a flying f anymore. I have constant headaches, anxiety, the lot. So yeah.
I hope you can find time to recover and a good support system. Both are hard to find. 😔
Hi fellow autistic person! Big huggs!
@I am MindBlind
Nope, you said Global I heard General Aphant =oP
I also saw some cards on Etsy.
Trying a different posting method but I have to watch again because I realized there was something I missed responding to =oD
Have DX, still Imposter Syndrome all the time, especially since I have done such a good job at creating an Autism safe space over the last years leading up to the Autism DX, and especially in the last 4 years, I was like, wow, this is an Autism Safe Space, am I Autistic? But yeah, mostly I have been throwing out the NT playbook I was given and replacing it with my own personal playbook and screw the world. Which is the right answer for Autism: Create your own playbook.
I agree, I love that I can speak for people (i.e. non verbal, now "high assistance needs) now that we are all "lumped together" as "Autistic".
Yeah... face movements are soooo thought through and planned.
Ohh! Found it! Putting physical being at risk for being unobservant!
So I was raised as a white male in T3x@$ (Texas), transitioned to female at 24, and started leaning Non-Binary @35 (39 now). But since 24, i've passed without trying, and amusingly I am now confused as Assigned Female at Birth that is "under the radar" beginning their Trans-Masc transition at 39. I constantly have to remind myself that the world perceives me as female.
But I thought it was just left over male invincibility that to this day I feel like no one has given me that "female experience"... I mean, not complaining, but yeah, "mean looks", "person following me", stalking; I really am not aware of that happening even when I have a bit of a beard and a person still "mam's" me up close...
Yes, also good and bad days post DX... but I see it more as "Productive Days" and "Recovery days that fuel the productive days." Unlike NT Extroverts, "other people" and "activities" are not spoon factories. I need time to "have a bad day" and just "do nothing" but watch youtube, but if that is all I have the spoons for because yesterday I had a surprise manager meeting and had to do 3 other social tasks... then that is what I have to do, otherwise I won't have spoons to be productive tomorrow or this afternoon.
Like a wave function; ups and downs, a "periodicity". I wish it was a little more predictable, like a nice 440Hz Sine Wave, but alas, maybe that is NT world, but I work in the radio, and I am right now happily combining my "issues" into a modulator frequency like a radio... which, funny enough, is how my imagination works; like an old talk radio. What type of radio? Well, Ham Radio of course, because I'm a Ham.. a jokester... yeah yeah, I like Puns... But Ham radio is pretty much voice only, not enough bandwidth to carry music enjoyably.
You need rest days!! Weeks! Time to think, time to heal, time to build spoons!
Uneven Productivity and change the narrative! They are not "Bad Days" they are "Spoon Factory Days"
I'm a sucker for a good pun. My kids and I like to argue of really bad puns are actually good ones or extra bad. I actually was mostly just "eh" on puns until my son when he was about 7 got really into telling puns. That I think was hilarious and so from then on, I'm on the search for the best worst puns.
Also, funny my son was AFAB and chose Eira as their name after coming out as he/they.
I like the idea of Spoon Factory. Before diagnosis I planned my relaxing days and would push through until I could have one. Now I'm realizing I'm going to need a lot more Spoon Factory Days. I mean I always had needed them, just had no clue.
Thank you. And big hugs your way. Lots of this resonates, especially the regression post-autism-realization and the traumatizing perfectionism standard. 🫶🏼 Also love the tip-taps and other dog noises, they're really comforting. 🐕
I do that too, tune out back ground, but I also have the other way around where i hear, see, smell everything - and NEVER have any man followed me. Maybe Denmark is a safe country but still. It sounds a little made up to me, that so many women should have been stalked. Maybe the man looked because of their pretty face or something, what im saying is, maybe the women also was a little fixated/predecided, you see what you wanna see, you know..
My mask tuned everything out, now that I'm dropping the mask, I'm in sensory overload. I now wear earplugs when I go to loud places.
@@i.am.mindblind mee too!!! Just got some loop with extra noicecancelling - but im struggeling with stuff in my ears so im having some kind of internal battle going on. But your video made me able to go shopping 3 times (adhd) yesterday without crashing.. crashing full on today tho - but yesterday was good - it depends on the amount of stress and therefore my ability to focus on what I want rather than was I sence..
You did a great job presenting this information authentically and also factually. Thank you so much for talking about adrenal glands and misdiagnosis. I had to stay persistent to find good help and now take replacement steroids. Definitely can’t unsee all of this. I do the eyebrow thing too, how tiring! I’ve also gotten into dangerous situations while being tuned out. The cPTSD recovery aspect is very challenging in the autistic burnout cycle. That looks like the anxiety depression cycle and is commonly misdiagnosed and overmedicated. It’s hard to find resources that align with all of our unique facets and intersections. Even harder to know the medical system is inaccessible, unaware, and under equipped. I had that same perfectionistic baseline and am being forced to find more effective ways to manage. No more pushing through. We sit down and face it now that we have tools and support. Sending love and gentle air hugs your way. 🩵💟🩶
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Thank you for sharing your own very personal experience.
The first thing I did was order toys. Having someone else see something you didn’t is incredibly unsettling. It feels like someone just pulled everything you knew in life from underneath. Being a “good girl” (or boy), well I began crying then. As you so beautifully said, please know you too are not alone either. 🥹💯❤️
I’m In the first few months and as a woman who is in her 40’s as well, your channel has quickly become the voice I have get to find. Thank you. 🙏☮️🫶
I like the dragon.
Thank you! It's a JellyCat brand. 😊
My Autism is worse
I hear you. ❤️
Excellent video 🩷 I love how you've explained & talked about your feelings & experiences, which I can definitely relate to 🫶
I'm so glad, I think it helps to know that others are figuring this all out too. Thank you for your support.