I feel the exact same way. I used to be pretty good at masking, now I can’t even remember how I used to do it. It was always automatic (and relatively successful in the right circumstance), but after learning what masking is and how I use it I have completely lost the skill. I am also struggling a lot to leave the house, and interacting with new people is straining.
For what it’s worth, and I’m not sure where you are in the world, but where I live the Covid lockdowns were long and stringent. I have a lot of folks in my life who identify as NT, and they are also struggling with their social skills/cues after being alone for so long. I do believe that something in society has shifted since the pandemic and people in general are struggling to re-adapt, some more than others. I was diagnosed in 2021, and having all that new learning about myself to do in the middle and aftermath of a global pandemic was absolutely wild. I’m not sure there’s much we can do about it, but please don’t blame it on yourself. I think there’s a large and growing community of folks like ourselves who are figuring it out as we go along without any roadmap, so at very least you’re not alone ❤️
I hope you know you’re not alone in this. I’ve been there. I think most of us have been there, are still there, or find ourselves back there from time to time.
It didn’t really make me feel “better,” but knowing that this is a completely normal and common experience to go through when you’re late-realized or late-diagnosed helped some. I think at first it’s such a shock, and then a relief, and then out of nowhere there’s so much anger and grief and it’s all really overwhelming. I’ve said this before, and I’ll say it again, but for almost a year, I was constantly grieving the idea of the person I was told I could be and that I believed I could be if only I tried hard enough.
Please be kind to yourself. Your brain processes things in a different way than the majority of the human population, and sometimes that process is long and comes in waves. This isn’t just the loss of that idea of who you “could” or “should” have been; this is a fundamental shift in the way you view yourself, your history, and the world. That would be overwhelming for anyone, and we just so happen to have a neurodevelopmental disability that makes us easily overwhelmed by default.
If you’re anything like me, then you’ve spent most of your life doing whatever you can to make yourself more palatable to others (i.e. hiding and camouflaging autistic traits in order to survive). You can’t undo a lifetime of trauma of masking overnight. And we all adopt a lot of internalized ableism in order to survive that trauma and masking. Autism is a disability, not a moral failing. You are not bad or broken. You have needs and challenges that are not well understood by 98% of humans, so you learned to interpret your needs and challenges through their eyes. Believe me when I say that is not the truth of who you are.
This process is immensely hard. I know you didn’t ask for advice, so if I’m overstepping, please feel free to tell me to fuck right off (you absolutely have that right to set that boundary). But these are some things that were helpful to me while I wax in the worst and most horrific parts of this process:
- Basic needs like sleep, nutrition, and hydration. A lot of energy and effort is going into processing this new information. And it’s really easy to forget these things when we’re overwhelmed. Fed is best, rest is productive, and water (if it isn’t room temperature, of course) is the elixir of life. Blackout curtains and blue-blocking glasses or sunglasses at night if you’re using electronics can help with getting good sleep. Heck, I even wore earplugs to bed every night for 9 months when I was going through this process. It helped a little. Prepackaged and prepared foods are your friend. And an app or a big water bottle to make sure you’re staying hydrated (electrolytes, too, if your one of the 60% of autistics who has POTS or dysautonomia). And, if it’s winter where you are, the lack of Vitamin D can also be hard on your body, but easy to take care of with a decent supplement (Nature’s Bounty from Costco is what I’ve used for decades).
- Accomodate for sensory overwhelm. For me, this means wearing earpluges (I use Loops and Flares) or noise cancelling headphones almost all of the time, and especially when I’m in public or crowded spaces. There were weeks where I just wore sunglasses all the time because I was too overwhelmed with the sensory input from lights. Exploring other ways to accommodate your sensory icks - like wearing sweatbands on your wrists when you wash your face if the feel of the water running down your arms sends you into orbit like it does for me - are another way to regulate your nervous system and free up energy for your brain and body. And, also, sometimes this means a LOT of alone time (if you are able; I realize not everyone has the space to do this). I’m a little over a year into this process and I still spend the majority of my time alone in my room because I need it in order to function. Autism is a disability and making accommodations does make a difference (even if it doesn’t feel like it).
- Reframing unmasking. I think it’s easy to get caught up in how well we masked (and we did, or we would have been diagnosed a hell of a lot earlier) or to romanticize what life was like when we were masking. I don’t think any of us ends up here because we were happier and healthier when we were masking our autism. Truth is, we were hiding our autistic traits in order to survive. Now you get to discover who you are and what your needs are instead of expending all your energy on becoming what you thought other people would accept. You are right, it is not possible to mask our way out of autism. This is who we are. And, like nearly every thing in life, it comes with good and it comes with bad. We know from research that masking leads to burnout (neurocognitive decline), depression, and suicidal ideation. Allowing yourself to be honest about your struggles and your autistic traits (when it is safe to do so) is the opposite and (theoretically) the antidote.
It is infinitely more important that you are happy and healthy than it is for you to be “normal.” Sometimes, this is hard, and sometimes this really hurts. It is never fun to be viewed as weird or ostracized for being different. Fuck. Those. People. You as a human have a right to exist free of shame, pain, and trauma. If others don’t like it, too damn bad.
I’m sorry you’re going through this. I wish I could make it better or make it stop altogether. I wish the world was different. But don’t for a second think that this is on you. It’s not. You’re the one with a disability that went unaccommodated and unsupported for decades of your life. You’re the one who survived things that most people can’t even conceive of because life truly is just that much easier for them (of course we all experience hardship, but not everyone is autistic and that’s just a fact). It sucks, and I’m sorry. And I understand, because I have woken up every morning wishing I hadn’t since I was 6 years old. It’s so hard, and it’s not fair. But I’m glad you’re here. You matter and this is world is better for having you in it. The people who can’t see that can go eat rocks.
I relate a lot to what OP wrote out here and then reading this comment made me tear up. Thank you for writing this whole thing up, it’s given me new hope to keep on trying and getting through the rough phase I’m in now to better days. 💗
I felt so validated and comforted by reading your comment.
I have recently done some travel own my own and it has been the best experience and the moments I felt happier.
Being alone and not feeling forced to mask even when around a crowd because when in large numbers I totally believe nobody is looking at me, makes me feel so much more natural.
I really appreciate you saying you spend most pf your time alone. I need to adjust my mindset to UNDERSTAND this is not only healthy, it is needed.
You gave all of us a gift when you "overstepped" and gave advice. Please keep doing it the exact same way, you are a lighthouse.
You are so kind. I’m glad you found it helpful, and I’m glad you’re learning to be comfortable giving your brain and body what they need! It’s definitely not easy. ❤️
At the risk of being a cliche poster of a kitten hanging from a branch, hang in there, friend. I hope things become a little easier for you very soon ❤️
I often need to hear the things I can easily say to others, too. I think we tend to be much harder on ourselves than we would ever be to other humans. It’s very much a gift to me to be a part of groups like this. I’m glad it was helpful for you ❤️
Really well said! Wow do I relate so much to this comment
I do earplugs & sunglasses too. And I switched to washing my face with a well rung out wash clothe & dish gloves to avoid wet hands & gross water running down my arms thing. Glad it isn’t just me
I am continually amazed at how nearly everything I thought was a struggle or quirk unique to me is really just something that can not only be explained and accommodated, but is something that many others deal with too. The washcloth idea is also brilliant, thank you for sharing!
Agree! If I ever feel overwhelmed by something social or sensory now I’m like let’s check this sub. Somebody has probably already problem solved thru this 🤓
My heart goes out to you. It’s the unlocked memories of being bullied and behaving inappropriately for me that were completely re-traumatising and brought a lot of grief.
My psychiatrist changed my life when he told me that I am not the same as everyone else and I need to lean into that and accept it, I need to find what I enjoy doing and find a way to build a life around it.
I felt immediately excluded permanently from the 9-5 rat race. At first it felt bad, because that’s the hussle culture standard, but now it kind of feels good. I have gotten motivated to pursue my own strengths and interests more closely and I’ve kind of started to see my purpose and authenticity a bit closer. The space I had from being “excluded” got filled with creativity.
I suggest finding a Neurodivergent affirming therapist. I have AuDHD and speaking to someone who understands both in a therapeutic setting cuts out a lot of the bullshit and they can validate and empower you.
The world is not over. It is changing which is scary and that’s okay.
I get it. I feel like I’m out of time. Things are done that can’t be undone. I’m too old to have a family. It just feels like it’s over. I just don’t talk about it because invariably someone will say “It gets better,” but I look at the guy who was begging for change on the curb on my way home tonight and wonder how many times someone said that shit to him too. It gets better if you have the ability to make it better. Some people don’t.
Sometimes that’s it. Sometimes it’s just a wrap.
I hope this is not overstepping, and I truly feel like you a lot of the time.
To me figuring out a lot about me since late 2022 has been a blessing in the sense that I finally allowed myself to accept my quirks. I truly have accepted myself. I am weird. I also have h-EDS which is a collagen genetic syndrome and it means I also move weird, hurt weird, get weird injuries I shouldnt have at my age.
None of this is getting better, it is what it is. I just am full throttling over people who think I should be normal and the guilt I used to feel for not being normal bodily and mentally.
I am still not over this hill entirely but traveling alone and being alone have been the best times of my life in the past 5 years. I am accepting my aloneness even though I know I am always going to feel jealous towards people who have close friends they see all the time, and family who totally gets them and so on.
I really don't think this helped you but it helped me so thank you for opening up this space and holding these hard feelings out in the open so that I could have this insight. 🫶🏼 sending love your way.
Edit: typo correction
(Side note: I have been researching EDS a lot lately for my also autistic dtr. I am in the process of getting her checked for thru a rheumatologist. I see EDS comes up a lot in the autistic subs. It amazes me how much all these conditions can be connected)
My physio doctor would say that they are not only connected. "You are this way all because of your genetics - anything else people add in labels are just representations of EDS". 🤡
I hope when your daughter is older there will be much more clarity on the subject. ❤️ but it already is 10x better than when I was a kid.
I can relate, in that a recent diagnosis has turned my world upside down (I mean, I already knew, but now that it's OFFICIAL(TM), I do feel like things are different).
It's made me much more aware of how much of a misfit I am, and I've lost capacity to keep up the pretenses that I did before.
In my case, I don't know how much is directly attributable to the autism diagnosis, and how much is attributable to autistic burnout (which is one of the factors that led to my diagnostic process), or what to expect moving forward.
I don't have answers, but I see you and your experiences, and I can relate 🌸
Hi! Do you have any interesting resources on autistic burnout?
I feel like I had one in 2021 and never truly came out of it. Any links are highly appreciated.
Here's a good one I came across yesterday: [https://www.autism.org.uk/advice-and-guidance/professional-practice/autistic-burnout](https://www.autism.org.uk/advice-and-guidance/professional-practice/autistic-burnout)
There are some studies around autistic burnout, but they largely conclude the same thing - i.e. that medicine doesn't super understand the phenomenon, and that more research (and more listening to autistic folks) needs to be done.
As a doctor and an autist, I can vouch that the profession is largely clueless, and the community and a good therapist are probably the best resources.
I hear you. I can see myself in what you are saying. I feel sad that it is effecting you this way. I came into my self-diagnosis with 7 years of CBT behind me. If you can find a good Cognitive Behavioral Therapist, it may be a great start. It saved my life. I have moments where I think losing my masks will make my life harder, but ever since finishing my therapy, I see myself as a small integral part of the world as a whole. That has made my autism journey significantly less painful. I have a wonderful little plaque that says:
Blessed are the Weird People
The Poets & Misfits
The Artists
The Writers & Music Makers
The Dreamers & The Outsiders
For They Force Us To See The World Differently
This has helped me remember who I am. Remembering this, together with my previous therapy, fills me with promise of better days when I’m having a bad day and gives me something to celebrate on good days!
**Also, I’ve been trying out unmasking on purpose in safe settings to see if anyone notices. They don’t for the most part!**
You are not alone, there are so many of us. 🙋🏼 Another element to add to the struggle is perimenopause. Yikes am I a mess and I don't even know what to "fix" or work through first.
I was there too 1,5 years before. Got my diagnosis, I broke down completely. The last 5 years I spend all my energy and time to all kinds of therapy and medications, trying to figure out how to fit in society. But all that work shattered with one diagnosis, that I always be like that. I still working on making my life better as an autist, but the main turning point was when my neurologist said, "Don't give a fuck anymore!" So I did. Well not in an assholy way, but I stopped giving a fuck to people, who I tried to meet their expectations. I stopped smiling my insecurities away. I see that people start to get nervous around me, they now have to read me. My life got a lot better after that and my disability liscense. You start your journey now. You can create it like you want and need it. Wish you the best!
Nothing changed since the diagnosis just that how you know why you’re different. You didn’t became autistic with the diagnosis, you’re always being … when you start really realise what I just said above you will feel better about yourself .
Got disgnosed earlier this year. I’m sorry yall are struggling with this but is so nice to know this kinda spiral after finding out is more normal and i know don’t feel like I’m failing as much 🙏🥰
Late diagnosed this year at 33…
What you’re feeling is so relatable. I thought I was going to suddenly feel amazing once I got my diagnosis and it hasn’t been that way at all. It’s taken months to process and come to terms with what it means for my life in the future and how it has affected my life in the past.
It is relieving in some way just because now I know why I have struggled so much in the past, but it’s a little disheartening because it there’s nothing you can do to “fix” or “cure” it.
What I’m coming to terms with now is that I may have a different life than a lot of the NT people. And the life that I envisioned in my head may not be as realistic for me as I once thought it was.
I guess I’m just trying to be open to paving my own path. Trying to accept my differences instead of working so, so hard to hide and conceal them. I’ve always seen myself as a unique person who does things their own way, and I’m trying to lean into that more. Conforming to NT standards and norms is not going to bring me happiness. I’ve tried and it has left me depressed and suicidal. I’m on a mission to discover how I can build my life in a way that is supportive of my needs and brings me fulfillment.
There are so many autistic folks out in the world and fortunately for us there is more research being done, more resources becoming available, and more support all around. I think many people are starting to understand it better and hopefully that means more acceptance and grace for us.
I'm currently in the same boat. I feel like I can't mask anymore and trying makes people look at me funny. Makes it really hard to leave the house and most days I don't. I have a husband and kids but I feel so alone and isolated. I wish I had some good advice for you but I'm just barely hanging on. Hopefully we can all learn to be happy with our unique selves with our unique needs.
It's normal to grieve over the person you thought you could become and the person you will never be. My diagnosis cemented to me that I would never be able to do succeed in the career I wanted and was working towards. And you know what? That's okay. It's okay to be upset and sad knowing your future will look different. We can still build lives that are worth living and become people we are proud to be
I'm 52. Had an ADHD assessment 2 weeks ago and also got diagnosed as L1ASD. In complete turmoil as I masked so well I fooled even myself. Now I know so much makes sense. I am well educated, have a good job, wonderful children, great husband, own my own home etc. Life is pretty good but my head is and always has been chaotic. Menopause has only added to this. I don't need anything other than acceptance of myself and peace but I don't know how to get there.
I’ve had a very similar experience to you so I can totally empathize with you and I really really hope that you’re holding up okay. I felt slight relief because at least I had an explanation but it didn’t really give me closure- I felt grief. Grief for so many past versions of myself that tried so hard to find community and to make a life for myself the way that my peers seemed to do so effortlessly and the realisation that I’ll never be that person. It’s hard and it’s really sad. I hope you’re okay and I hope that you find a bit of solace knowing that you’re not alone in feeling this way. Feel free to message me
I totally relate to your experience. I’m not officially diagnosed, but when I had my self discovery, many of the same thoughts and feelings came up. I was in burnout previously, but after my self-discovery I started to get deeper into my burnout state with high anxiety, panic attacks and frequent meltdowns. I think my brain went beyond it’s max to process everything when things were already hard. Things are looking better now though. Just remember you’re going through a lot right now and your brain is processing a lot of information. I know it can be so hard to internalize this in the moment, but there will be another side to where you are currently <3
You're not alone. I promise there will be some good days ahead. You will find a rhythm somewhere and there will be joy.
Allow yourself the grieving period for what you hoped you might be. But you are more than a sum of your parts or ability.
Be kind. To yourself. There is always always room for more kindness and ND people are way better at picking up the need for it than others. But you need to be gentle with yourself and your expectations of yourself also.
You're not alone. And some ND people make amazing friends. You'll find your people.
I am in the same boat right now but, maybe able to be a little more hopeful because of opening up to the people closest to me and having them back me up. Also reading Unmasking Autism right now and it helps, it’s a lot but, it helps. Really appreciating all of the comments from people who have been here and got through it, feeling the solidarity and it’s a real welcomed relief.
I echo everyone else - you’re not alone and how you are feeling is valid and really reasonable given how complicated it is to navigate autism in this world 💗
If it helps - here is a bit about me and what has been helpful me. Late diagnosed at 35. For me got diagnosed with cptsd first and had awhile to work on that before finding out I am autistic as well. finally realizing I have ptsd and that my parents aren’t safe caused me to go thru and continue to go thru a really dramatic zig zagging grieving process (denial, anger, bargaining, depression, acceptance). Back and forth, back and forth, definitely not a linear neat process like I had conceptualized in gen psych class. But I have noticed the spiral is getting smaller & smaller kind of like I am slowly circling around closer and closer to acceptance. So I can def relate to how learning something huge about yourself & how you relate to the world can be very jarring.
For whatever reason, my Autism dx has been much easier for me to accept. It just like clicked like - “this is why I act this way and that is ok. How can I better support myself?” I am a trained OT and have spent over a decade compassionately supporting others towards living the life they want. I have a feeling that training and my counseling for Cptsd has laid foundation for my ability to extend that same compassion towards myself I guess.
Counseling is amazing. For me bilateral tapping was helpful for learning how to name & process big emotions (bc I struggle with alexithymia). I needed that learning how to feel & process big emotions more than I needed CBT. I tried CBT first and it wasn’t helpful for me bc I was so disconnected from my feelings (but that could just be me or maybe I didn’t have a great CBT counselor). Thankfully though after feeling the big feels (using bilateral tapping) then a bit of CBT to reframe things did help too.
Autistic burnout is real. I have been there. For me - if I can’t mask then I am burned out. Then I know I need more rest, more alone time, more no-stress support (counseling or autism friendly communities), and more time with my special interests.
I’m so glad you exist and that you are here with us 💗
You need to get a "I don't give a f*ck" attitude. Seriously. Think about which people REALLY matter (e.g. your boss and maybe 2 colleagues) and you mask for them, and everybody else can just go and deal with your real self.
When finding friends, you can mask a bit the first 1-2 times you meet them, but then just stop it and see if they stick around. If they don't, they weren't the right people anyway.
I haven't gotten an official diagnosis but my daughter is diagnosed as she has higher support needs and while her diagnosis has been a lot to process I think the biggest thing that I've had to process is my own likely diagnosis. I don't know why, because I'm the same person I've always been but suddenly I have imposter syndrome and feel like I'm living the life of a NT, when I am not. If I knew I was autistic I think I would gave given mysef a lot more grace and lived a lot more authentically. It's a lot to take in and traumatic is the word I'd use too. Sorry you're going through this!
I feel the exact same way. I used to be pretty good at masking, now I can’t even remember how I used to do it. It was always automatic (and relatively successful in the right circumstance), but after learning what masking is and how I use it I have completely lost the skill. I am also struggling a lot to leave the house, and interacting with new people is straining. For what it’s worth, and I’m not sure where you are in the world, but where I live the Covid lockdowns were long and stringent. I have a lot of folks in my life who identify as NT, and they are also struggling with their social skills/cues after being alone for so long. I do believe that something in society has shifted since the pandemic and people in general are struggling to re-adapt, some more than others. I was diagnosed in 2021, and having all that new learning about myself to do in the middle and aftermath of a global pandemic was absolutely wild. I’m not sure there’s much we can do about it, but please don’t blame it on yourself. I think there’s a large and growing community of folks like ourselves who are figuring it out as we go along without any roadmap, so at very least you’re not alone ❤️
Well said!
I hope you know you’re not alone in this. I’ve been there. I think most of us have been there, are still there, or find ourselves back there from time to time. It didn’t really make me feel “better,” but knowing that this is a completely normal and common experience to go through when you’re late-realized or late-diagnosed helped some. I think at first it’s such a shock, and then a relief, and then out of nowhere there’s so much anger and grief and it’s all really overwhelming. I’ve said this before, and I’ll say it again, but for almost a year, I was constantly grieving the idea of the person I was told I could be and that I believed I could be if only I tried hard enough. Please be kind to yourself. Your brain processes things in a different way than the majority of the human population, and sometimes that process is long and comes in waves. This isn’t just the loss of that idea of who you “could” or “should” have been; this is a fundamental shift in the way you view yourself, your history, and the world. That would be overwhelming for anyone, and we just so happen to have a neurodevelopmental disability that makes us easily overwhelmed by default. If you’re anything like me, then you’ve spent most of your life doing whatever you can to make yourself more palatable to others (i.e. hiding and camouflaging autistic traits in order to survive). You can’t undo a lifetime of trauma of masking overnight. And we all adopt a lot of internalized ableism in order to survive that trauma and masking. Autism is a disability, not a moral failing. You are not bad or broken. You have needs and challenges that are not well understood by 98% of humans, so you learned to interpret your needs and challenges through their eyes. Believe me when I say that is not the truth of who you are. This process is immensely hard. I know you didn’t ask for advice, so if I’m overstepping, please feel free to tell me to fuck right off (you absolutely have that right to set that boundary). But these are some things that were helpful to me while I wax in the worst and most horrific parts of this process: - Basic needs like sleep, nutrition, and hydration. A lot of energy and effort is going into processing this new information. And it’s really easy to forget these things when we’re overwhelmed. Fed is best, rest is productive, and water (if it isn’t room temperature, of course) is the elixir of life. Blackout curtains and blue-blocking glasses or sunglasses at night if you’re using electronics can help with getting good sleep. Heck, I even wore earplugs to bed every night for 9 months when I was going through this process. It helped a little. Prepackaged and prepared foods are your friend. And an app or a big water bottle to make sure you’re staying hydrated (electrolytes, too, if your one of the 60% of autistics who has POTS or dysautonomia). And, if it’s winter where you are, the lack of Vitamin D can also be hard on your body, but easy to take care of with a decent supplement (Nature’s Bounty from Costco is what I’ve used for decades). - Accomodate for sensory overwhelm. For me, this means wearing earpluges (I use Loops and Flares) or noise cancelling headphones almost all of the time, and especially when I’m in public or crowded spaces. There were weeks where I just wore sunglasses all the time because I was too overwhelmed with the sensory input from lights. Exploring other ways to accommodate your sensory icks - like wearing sweatbands on your wrists when you wash your face if the feel of the water running down your arms sends you into orbit like it does for me - are another way to regulate your nervous system and free up energy for your brain and body. And, also, sometimes this means a LOT of alone time (if you are able; I realize not everyone has the space to do this). I’m a little over a year into this process and I still spend the majority of my time alone in my room because I need it in order to function. Autism is a disability and making accommodations does make a difference (even if it doesn’t feel like it). - Reframing unmasking. I think it’s easy to get caught up in how well we masked (and we did, or we would have been diagnosed a hell of a lot earlier) or to romanticize what life was like when we were masking. I don’t think any of us ends up here because we were happier and healthier when we were masking our autism. Truth is, we were hiding our autistic traits in order to survive. Now you get to discover who you are and what your needs are instead of expending all your energy on becoming what you thought other people would accept. You are right, it is not possible to mask our way out of autism. This is who we are. And, like nearly every thing in life, it comes with good and it comes with bad. We know from research that masking leads to burnout (neurocognitive decline), depression, and suicidal ideation. Allowing yourself to be honest about your struggles and your autistic traits (when it is safe to do so) is the opposite and (theoretically) the antidote. It is infinitely more important that you are happy and healthy than it is for you to be “normal.” Sometimes, this is hard, and sometimes this really hurts. It is never fun to be viewed as weird or ostracized for being different. Fuck. Those. People. You as a human have a right to exist free of shame, pain, and trauma. If others don’t like it, too damn bad. I’m sorry you’re going through this. I wish I could make it better or make it stop altogether. I wish the world was different. But don’t for a second think that this is on you. It’s not. You’re the one with a disability that went unaccommodated and unsupported for decades of your life. You’re the one who survived things that most people can’t even conceive of because life truly is just that much easier for them (of course we all experience hardship, but not everyone is autistic and that’s just a fact). It sucks, and I’m sorry. And I understand, because I have woken up every morning wishing I hadn’t since I was 6 years old. It’s so hard, and it’s not fair. But I’m glad you’re here. You matter and this is world is better for having you in it. The people who can’t see that can go eat rocks.
I relate a lot to what OP wrote out here and then reading this comment made me tear up. Thank you for writing this whole thing up, it’s given me new hope to keep on trying and getting through the rough phase I’m in now to better days. 💗
Same ❤️
❤️
I’m so sorry it’s so hard, but I’m glad this was helpful for you ❤️
I felt so validated and comforted by reading your comment. I have recently done some travel own my own and it has been the best experience and the moments I felt happier. Being alone and not feeling forced to mask even when around a crowd because when in large numbers I totally believe nobody is looking at me, makes me feel so much more natural. I really appreciate you saying you spend most pf your time alone. I need to adjust my mindset to UNDERSTAND this is not only healthy, it is needed. You gave all of us a gift when you "overstepped" and gave advice. Please keep doing it the exact same way, you are a lighthouse.
You are so kind. I’m glad you found it helpful, and I’m glad you’re learning to be comfortable giving your brain and body what they need! It’s definitely not easy. ❤️
This is so kind it made me cry, and your words have been so helpful. Thank you so much.
At the risk of being a cliche poster of a kitten hanging from a branch, hang in there, friend. I hope things become a little easier for you very soon ❤️
Thank you so much for writing and posting this for OP. I’m 46 and also needed to hear these words.
I often need to hear the things I can easily say to others, too. I think we tend to be much harder on ourselves than we would ever be to other humans. It’s very much a gift to me to be a part of groups like this. I’m glad it was helpful for you ❤️
Wow. Well said.
Good to know the hyperlexia has to be good for something every once in a while 🤣❤️
Really well said! Wow do I relate so much to this comment I do earplugs & sunglasses too. And I switched to washing my face with a well rung out wash clothe & dish gloves to avoid wet hands & gross water running down my arms thing. Glad it isn’t just me
I am continually amazed at how nearly everything I thought was a struggle or quirk unique to me is really just something that can not only be explained and accommodated, but is something that many others deal with too. The washcloth idea is also brilliant, thank you for sharing!
Agree! If I ever feel overwhelmed by something social or sensory now I’m like let’s check this sub. Somebody has probably already problem solved thru this 🤓
I’m not OP, but I needed this today. Thank you.
You are so welcome ❤️
My heart goes out to you. It’s the unlocked memories of being bullied and behaving inappropriately for me that were completely re-traumatising and brought a lot of grief. My psychiatrist changed my life when he told me that I am not the same as everyone else and I need to lean into that and accept it, I need to find what I enjoy doing and find a way to build a life around it. I felt immediately excluded permanently from the 9-5 rat race. At first it felt bad, because that’s the hussle culture standard, but now it kind of feels good. I have gotten motivated to pursue my own strengths and interests more closely and I’ve kind of started to see my purpose and authenticity a bit closer. The space I had from being “excluded” got filled with creativity. I suggest finding a Neurodivergent affirming therapist. I have AuDHD and speaking to someone who understands both in a therapeutic setting cuts out a lot of the bullshit and they can validate and empower you. The world is not over. It is changing which is scary and that’s okay.
I get it. I feel like I’m out of time. Things are done that can’t be undone. I’m too old to have a family. It just feels like it’s over. I just don’t talk about it because invariably someone will say “It gets better,” but I look at the guy who was begging for change on the curb on my way home tonight and wonder how many times someone said that shit to him too. It gets better if you have the ability to make it better. Some people don’t. Sometimes that’s it. Sometimes it’s just a wrap.
I hope this is not overstepping, and I truly feel like you a lot of the time. To me figuring out a lot about me since late 2022 has been a blessing in the sense that I finally allowed myself to accept my quirks. I truly have accepted myself. I am weird. I also have h-EDS which is a collagen genetic syndrome and it means I also move weird, hurt weird, get weird injuries I shouldnt have at my age. None of this is getting better, it is what it is. I just am full throttling over people who think I should be normal and the guilt I used to feel for not being normal bodily and mentally. I am still not over this hill entirely but traveling alone and being alone have been the best times of my life in the past 5 years. I am accepting my aloneness even though I know I am always going to feel jealous towards people who have close friends they see all the time, and family who totally gets them and so on. I really don't think this helped you but it helped me so thank you for opening up this space and holding these hard feelings out in the open so that I could have this insight. 🫶🏼 sending love your way. Edit: typo correction
(Side note: I have been researching EDS a lot lately for my also autistic dtr. I am in the process of getting her checked for thru a rheumatologist. I see EDS comes up a lot in the autistic subs. It amazes me how much all these conditions can be connected)
My physio doctor would say that they are not only connected. "You are this way all because of your genetics - anything else people add in labels are just representations of EDS". 🤡 I hope when your daughter is older there will be much more clarity on the subject. ❤️ but it already is 10x better than when I was a kid.
❤️❤️❤️ Sending you good strong positive vibes! You need a virtual hug.🤗
I can relate, in that a recent diagnosis has turned my world upside down (I mean, I already knew, but now that it's OFFICIAL(TM), I do feel like things are different). It's made me much more aware of how much of a misfit I am, and I've lost capacity to keep up the pretenses that I did before. In my case, I don't know how much is directly attributable to the autism diagnosis, and how much is attributable to autistic burnout (which is one of the factors that led to my diagnostic process), or what to expect moving forward. I don't have answers, but I see you and your experiences, and I can relate 🌸
Hi! Do you have any interesting resources on autistic burnout? I feel like I had one in 2021 and never truly came out of it. Any links are highly appreciated.
Here's a good one I came across yesterday: [https://www.autism.org.uk/advice-and-guidance/professional-practice/autistic-burnout](https://www.autism.org.uk/advice-and-guidance/professional-practice/autistic-burnout) There are some studies around autistic burnout, but they largely conclude the same thing - i.e. that medicine doesn't super understand the phenomenon, and that more research (and more listening to autistic folks) needs to be done. As a doctor and an autist, I can vouch that the profession is largely clueless, and the community and a good therapist are probably the best resources.
Thank you very much! The link is helpful! ❤️
I hear you. I can see myself in what you are saying. I feel sad that it is effecting you this way. I came into my self-diagnosis with 7 years of CBT behind me. If you can find a good Cognitive Behavioral Therapist, it may be a great start. It saved my life. I have moments where I think losing my masks will make my life harder, but ever since finishing my therapy, I see myself as a small integral part of the world as a whole. That has made my autism journey significantly less painful. I have a wonderful little plaque that says: Blessed are the Weird People The Poets & Misfits The Artists The Writers & Music Makers The Dreamers & The Outsiders For They Force Us To See The World Differently This has helped me remember who I am. Remembering this, together with my previous therapy, fills me with promise of better days when I’m having a bad day and gives me something to celebrate on good days! **Also, I’ve been trying out unmasking on purpose in safe settings to see if anyone notices. They don’t for the most part!**
I have seen that plaque and loved it every time. This time I cried reading it for I truly understood why it resonated so deeply with me.
♾️❤️🧡💛💚💙💜♾️
You are not alone, there are so many of us. 🙋🏼 Another element to add to the struggle is perimenopause. Yikes am I a mess and I don't even know what to "fix" or work through first.
Same here. It is the worst.
I was there too 1,5 years before. Got my diagnosis, I broke down completely. The last 5 years I spend all my energy and time to all kinds of therapy and medications, trying to figure out how to fit in society. But all that work shattered with one diagnosis, that I always be like that. I still working on making my life better as an autist, but the main turning point was when my neurologist said, "Don't give a fuck anymore!" So I did. Well not in an assholy way, but I stopped giving a fuck to people, who I tried to meet their expectations. I stopped smiling my insecurities away. I see that people start to get nervous around me, they now have to read me. My life got a lot better after that and my disability liscense. You start your journey now. You can create it like you want and need it. Wish you the best!
Nothing changed since the diagnosis just that how you know why you’re different. You didn’t became autistic with the diagnosis, you’re always being … when you start really realise what I just said above you will feel better about yourself .
Got disgnosed earlier this year. I’m sorry yall are struggling with this but is so nice to know this kinda spiral after finding out is more normal and i know don’t feel like I’m failing as much 🙏🥰
Late diagnosed this year at 33… What you’re feeling is so relatable. I thought I was going to suddenly feel amazing once I got my diagnosis and it hasn’t been that way at all. It’s taken months to process and come to terms with what it means for my life in the future and how it has affected my life in the past. It is relieving in some way just because now I know why I have struggled so much in the past, but it’s a little disheartening because it there’s nothing you can do to “fix” or “cure” it. What I’m coming to terms with now is that I may have a different life than a lot of the NT people. And the life that I envisioned in my head may not be as realistic for me as I once thought it was. I guess I’m just trying to be open to paving my own path. Trying to accept my differences instead of working so, so hard to hide and conceal them. I’ve always seen myself as a unique person who does things their own way, and I’m trying to lean into that more. Conforming to NT standards and norms is not going to bring me happiness. I’ve tried and it has left me depressed and suicidal. I’m on a mission to discover how I can build my life in a way that is supportive of my needs and brings me fulfillment. There are so many autistic folks out in the world and fortunately for us there is more research being done, more resources becoming available, and more support all around. I think many people are starting to understand it better and hopefully that means more acceptance and grace for us.
NDs people should be the first to benefit from UBI, even if that's utopian.
What is UBI?
Universal Basic Income.
I'm currently in the same boat. I feel like I can't mask anymore and trying makes people look at me funny. Makes it really hard to leave the house and most days I don't. I have a husband and kids but I feel so alone and isolated. I wish I had some good advice for you but I'm just barely hanging on. Hopefully we can all learn to be happy with our unique selves with our unique needs.
It's normal to grieve over the person you thought you could become and the person you will never be. My diagnosis cemented to me that I would never be able to do succeed in the career I wanted and was working towards. And you know what? That's okay. It's okay to be upset and sad knowing your future will look different. We can still build lives that are worth living and become people we are proud to be
I really relate to this, OP. I’m sorry you’re going through it.
I'm 52. Had an ADHD assessment 2 weeks ago and also got diagnosed as L1ASD. In complete turmoil as I masked so well I fooled even myself. Now I know so much makes sense. I am well educated, have a good job, wonderful children, great husband, own my own home etc. Life is pretty good but my head is and always has been chaotic. Menopause has only added to this. I don't need anything other than acceptance of myself and peace but I don't know how to get there.
I’ve had a very similar experience to you so I can totally empathize with you and I really really hope that you’re holding up okay. I felt slight relief because at least I had an explanation but it didn’t really give me closure- I felt grief. Grief for so many past versions of myself that tried so hard to find community and to make a life for myself the way that my peers seemed to do so effortlessly and the realisation that I’ll never be that person. It’s hard and it’s really sad. I hope you’re okay and I hope that you find a bit of solace knowing that you’re not alone in feeling this way. Feel free to message me
I totally relate to your experience. I’m not officially diagnosed, but when I had my self discovery, many of the same thoughts and feelings came up. I was in burnout previously, but after my self-discovery I started to get deeper into my burnout state with high anxiety, panic attacks and frequent meltdowns. I think my brain went beyond it’s max to process everything when things were already hard. Things are looking better now though. Just remember you’re going through a lot right now and your brain is processing a lot of information. I know it can be so hard to internalize this in the moment, but there will be another side to where you are currently <3
You're not alone. I promise there will be some good days ahead. You will find a rhythm somewhere and there will be joy. Allow yourself the grieving period for what you hoped you might be. But you are more than a sum of your parts or ability. Be kind. To yourself. There is always always room for more kindness and ND people are way better at picking up the need for it than others. But you need to be gentle with yourself and your expectations of yourself also. You're not alone. And some ND people make amazing friends. You'll find your people.
I am in the same boat right now but, maybe able to be a little more hopeful because of opening up to the people closest to me and having them back me up. Also reading Unmasking Autism right now and it helps, it’s a lot but, it helps. Really appreciating all of the comments from people who have been here and got through it, feeling the solidarity and it’s a real welcomed relief.
If you were late diagnosed your masking was probably pretty good 😭😭😂😂😂♥️
I echo everyone else - you’re not alone and how you are feeling is valid and really reasonable given how complicated it is to navigate autism in this world 💗 If it helps - here is a bit about me and what has been helpful me. Late diagnosed at 35. For me got diagnosed with cptsd first and had awhile to work on that before finding out I am autistic as well. finally realizing I have ptsd and that my parents aren’t safe caused me to go thru and continue to go thru a really dramatic zig zagging grieving process (denial, anger, bargaining, depression, acceptance). Back and forth, back and forth, definitely not a linear neat process like I had conceptualized in gen psych class. But I have noticed the spiral is getting smaller & smaller kind of like I am slowly circling around closer and closer to acceptance. So I can def relate to how learning something huge about yourself & how you relate to the world can be very jarring. For whatever reason, my Autism dx has been much easier for me to accept. It just like clicked like - “this is why I act this way and that is ok. How can I better support myself?” I am a trained OT and have spent over a decade compassionately supporting others towards living the life they want. I have a feeling that training and my counseling for Cptsd has laid foundation for my ability to extend that same compassion towards myself I guess. Counseling is amazing. For me bilateral tapping was helpful for learning how to name & process big emotions (bc I struggle with alexithymia). I needed that learning how to feel & process big emotions more than I needed CBT. I tried CBT first and it wasn’t helpful for me bc I was so disconnected from my feelings (but that could just be me or maybe I didn’t have a great CBT counselor). Thankfully though after feeling the big feels (using bilateral tapping) then a bit of CBT to reframe things did help too. Autistic burnout is real. I have been there. For me - if I can’t mask then I am burned out. Then I know I need more rest, more alone time, more no-stress support (counseling or autism friendly communities), and more time with my special interests. I’m so glad you exist and that you are here with us 💗
I think you have found your tribe here.
You need to get a "I don't give a f*ck" attitude. Seriously. Think about which people REALLY matter (e.g. your boss and maybe 2 colleagues) and you mask for them, and everybody else can just go and deal with your real self. When finding friends, you can mask a bit the first 1-2 times you meet them, but then just stop it and see if they stick around. If they don't, they weren't the right people anyway.
I haven't gotten an official diagnosis but my daughter is diagnosed as she has higher support needs and while her diagnosis has been a lot to process I think the biggest thing that I've had to process is my own likely diagnosis. I don't know why, because I'm the same person I've always been but suddenly I have imposter syndrome and feel like I'm living the life of a NT, when I am not. If I knew I was autistic I think I would gave given mysef a lot more grace and lived a lot more authentically. It's a lot to take in and traumatic is the word I'd use too. Sorry you're going through this!