Dear Amy, I read this after Wake restacked it. Thank you so much for taking the time and effort to share your experience so openly. Your courage in describing your journey with burnout and the challenges of masking is a powerful reminder of the unseen battles so many face. As the saying goes, ‘Be kind, for everyone you meet is fighting a battle you know nothing about.’ As a fairly neurotypical reader, your words have helped me understand so much more about how important it is for neurodivergent people to feel safe to be themselves without the pressure to mask. We all need to do better at recognising that not everyone experiences the world the same way, and I’m grateful for the insights you’ve shared.
Thank you! This describes it all so well. I have chronic illness too, and it is hard to know where the ME is and where the autistic burnout is, such an overlap! (Throw menopause in and it is chaos!) Thanks to Wake for the recommendation!
I’m so grateful to be able to read this, and so much of it resonates with me.
Sometimes I find myself reading and becoming unfocused… but not with your writing. The way you write seeps directly into my brain and I find myself nodding (which is one of my stims).
When I read what you write I know I am not alone in what I’ve experienced my entire life.
I am grateful for you, and your clear boundaries, and I know that you’ve been experiencing intense burnout and I’m so glad that you let me know, so I could give you space.
My offer of friendship is the kind that doesn’t expire. I’m grateful that you were one of my first writer-friends here, and I was so excited when I saw your newsletter pop up.
I took a nap so I could be refreshed when I read it.
I’m so glad you’re out there in the world being you, explaining the way you are autistic. So much of it resonates with me, and not all of it, for which I am grateful too. Because all of us are different. But so many things you described are actively the way I experience the world.
Right now I’m in a monotropic mode about restarting my community space and I’m trying to manage the amount of demand required in something like this. But I know that having a space where I am the one in control of how it works is really the only way I can comfortably exist in the world and not succumb to burnout constantly.
Thank you for reminding me that is why I am doing the hard work at the beginning. To save myself from all the hard parts of being an autistic person in a world that is predominantly not made for us. So I can make space for other neurodivergent peoples.
Thank you so much for your comment, Wake, and your lovely compliments because I really need them. I worked on this post for months, it got less of an immediate response than previous posts, and I thought that was kind of a bummer, especially since I worked so hard on it.
It makes me so happy that it resonates with you because I mostly wrote it for other autistics. Of course, not every bit will resonate, because we're different people, but I love not feeling like an alien for once in my life. I'm a thing that exists! There are others like me!
I really, truly appreciate you and all you do for our community. I hope that I can visit your space, someday.
It really is such an important post and I’ve shared it because I know that if it meant this much to me, that there are other people who may need the validation of your experience.
Thank you for the time and energy you put into writing your truth.
I also hope, someday, that you’ll be able to visit. That would be magical.
I'm sorry I took so long to read this and respond.
I've had an unimportant, in the great scheme of things, but still very annoying matter impinging on my quality of life, and on more of my attention and energy than I wished, the past few months. It is recently resolved. My insight is that someone or something making you feel powerless exacerbates the situation. Kind of obvious, I guess, really, but I'd never thought of it that way before. And "ignore it," is not always the correct way to handle it, unless there's no other way. That's all I care to say about that.
Your writing, as always, is thoughtful, moving and interesting.
I wonder, and hope to hear, if your neurodivergent symptoms will evolve (if they do) with age, as they do with us on the more neurotypical side of the spectrum. It is also interesting how much your symptoms parallel those of "long covid." In other words, covid is probably having a neurological impact on some people.
I'm glad you're doing better now. I always look forward to hearing from you.
I'm happy to hear from you, no matter when it is. I'm glad to hear that your annoyance has been resolved. It's so rare that annoyances can ever be resolved, these days. Usually, we just have to live with them.
I prefer the word "trait" over "symptom" because I don't see autism as a disease to be cured, but a neurological difference. Autistic burnout can kind of sound like long covid in some ways, true, but that ignores the flip side of those very same traits, which, for many of us, are quite positive. The good can't exist without the bad, which is why most autistic people are against finding a "cure" for autism or genetic screening for it. I just don't often feel the need to tell people about the positive things because I don't need support for them.
How autism changes as one ages is something I've heard other autistics talk about. I don't think much has changed for me, as far as my actual objective experience goes. The biggest change is my attitude. I'm more accepting of myself, so I'm less likely to pretend I'm fine when I'm not, and, since my diagnosis (maybe a more accurate term would be "identification"), I'm far less likely to hold myself to neurotypical standards, and I find that so freeing.
Of course, my body is older, so it can't handle the stress it did when I was younger. That forced me to make lifestyle changes, and in a way, that was the best thing that could've happened to me. The only problem is the one I mentioned in the post. The rest of society just doesn't want to allow for the lifestyles of people who need something different.
Thanks for this post, Amy. It gives me a better understanding -- tip of the iceberg -- of what autistics endure every day. You are such an articulate and strong person. It's too bad more people don't have (for whatever reason) access to your substack. I think there would be more compassion in the world, and we definitely need more compassion. Pat
Thank you. That's such a kind thing to say. I think people don't come to my Substack because I don't do any of the things a person is supposed to do to attract and maintain readers. I'm not even sure what they are, but I know I'm not doing them.
Wow, I’m always impressed when you write about this stuff. It must be really damned hard, to live it and to write about it. But I’m guessing if you’re writing about it you’re on the upswing. Hope so anyway.
I am on the upswing, Tom, and I really appreciate you liking and commenting. I worked on this post for months. It's a lot longer than what I usually write. I usually post around 1000 words, and this was more than 3000. I just didn't feel like it could've been shorter, but maybe it's a bit much because I usually would've had a few more responses by now.
I know that it isn't always easy to leave timely comments (or, comment, at all). I often feel guilty because of the number of times I've not commented on friends posts, but sometimes, that's something that just can't be helped.
Yeah, I couldn't sleep last night because of itching and prickling, again. It was pretty intense, but it passed quickly. Now that I'm thinking about it, it's generally been not quite as bad in the past couple of weeks. About two weeks ago, I became more diligent about spiritual practices. I'm taking my meditation more seriously and journaling more seriously. I've been doing a daily yoga practice and studying a couple of yoga-sutras a day.
The sutras are not exactly spiritual. They're more intellectual, but it's still a practice in faith. Meaning, I don't know what it'll actually accomplish, but suspending disbelief is a spiritual practice in itself. It's a form of surrender, and I think the most interesting shifts happen when we are in a state of surrender.
It's only when I reach the end of my power am I willing to look to things that are bigger than me, but I guess it's better never doing it. These are the kinds of things that have helped me heal before.
Dear Amy, I read this after Wake restacked it. Thank you so much for taking the time and effort to share your experience so openly. Your courage in describing your journey with burnout and the challenges of masking is a powerful reminder of the unseen battles so many face. As the saying goes, ‘Be kind, for everyone you meet is fighting a battle you know nothing about.’ As a fairly neurotypical reader, your words have helped me understand so much more about how important it is for neurodivergent people to feel safe to be themselves without the pressure to mask. We all need to do better at recognising that not everyone experiences the world the same way, and I’m grateful for the insights you’ve shared.
Thank you so much for your kind words, Emily. I really appreciate you coming over hear to read my post and take the time to write your comment.
Thank you! This describes it all so well. I have chronic illness too, and it is hard to know where the ME is and where the autistic burnout is, such an overlap! (Throw menopause in and it is chaos!) Thanks to Wake for the recommendation!
Thank you for reading it! I'm so happy to hear that it resonated with you. Yeah, I can imagine there's a huge overlap between this and ME.
I’m so grateful to be able to read this, and so much of it resonates with me.
Sometimes I find myself reading and becoming unfocused… but not with your writing. The way you write seeps directly into my brain and I find myself nodding (which is one of my stims).
When I read what you write I know I am not alone in what I’ve experienced my entire life.
I am grateful for you, and your clear boundaries, and I know that you’ve been experiencing intense burnout and I’m so glad that you let me know, so I could give you space.
My offer of friendship is the kind that doesn’t expire. I’m grateful that you were one of my first writer-friends here, and I was so excited when I saw your newsletter pop up.
I took a nap so I could be refreshed when I read it.
I’m so glad you’re out there in the world being you, explaining the way you are autistic. So much of it resonates with me, and not all of it, for which I am grateful too. Because all of us are different. But so many things you described are actively the way I experience the world.
Right now I’m in a monotropic mode about restarting my community space and I’m trying to manage the amount of demand required in something like this. But I know that having a space where I am the one in control of how it works is really the only way I can comfortably exist in the world and not succumb to burnout constantly.
Thank you for reminding me that is why I am doing the hard work at the beginning. To save myself from all the hard parts of being an autistic person in a world that is predominantly not made for us. So I can make space for other neurodivergent peoples.
💖💖💖
Thank you so much for your comment, Wake, and your lovely compliments because I really need them. I worked on this post for months, it got less of an immediate response than previous posts, and I thought that was kind of a bummer, especially since I worked so hard on it.
It makes me so happy that it resonates with you because I mostly wrote it for other autistics. Of course, not every bit will resonate, because we're different people, but I love not feeling like an alien for once in my life. I'm a thing that exists! There are others like me!
I really, truly appreciate you and all you do for our community. I hope that I can visit your space, someday.
It really is such an important post and I’ve shared it because I know that if it meant this much to me, that there are other people who may need the validation of your experience.
Thank you for the time and energy you put into writing your truth.
I also hope, someday, that you’ll be able to visit. That would be magical.
Hi Amy,
I'm sorry I took so long to read this and respond.
I've had an unimportant, in the great scheme of things, but still very annoying matter impinging on my quality of life, and on more of my attention and energy than I wished, the past few months. It is recently resolved. My insight is that someone or something making you feel powerless exacerbates the situation. Kind of obvious, I guess, really, but I'd never thought of it that way before. And "ignore it," is not always the correct way to handle it, unless there's no other way. That's all I care to say about that.
Your writing, as always, is thoughtful, moving and interesting.
I wonder, and hope to hear, if your neurodivergent symptoms will evolve (if they do) with age, as they do with us on the more neurotypical side of the spectrum. It is also interesting how much your symptoms parallel those of "long covid." In other words, covid is probably having a neurological impact on some people.
I'm glad you're doing better now. I always look forward to hearing from you.
Ellen,
I'm happy to hear from you, no matter when it is. I'm glad to hear that your annoyance has been resolved. It's so rare that annoyances can ever be resolved, these days. Usually, we just have to live with them.
I prefer the word "trait" over "symptom" because I don't see autism as a disease to be cured, but a neurological difference. Autistic burnout can kind of sound like long covid in some ways, true, but that ignores the flip side of those very same traits, which, for many of us, are quite positive. The good can't exist without the bad, which is why most autistic people are against finding a "cure" for autism or genetic screening for it. I just don't often feel the need to tell people about the positive things because I don't need support for them.
How autism changes as one ages is something I've heard other autistics talk about. I don't think much has changed for me, as far as my actual objective experience goes. The biggest change is my attitude. I'm more accepting of myself, so I'm less likely to pretend I'm fine when I'm not, and, since my diagnosis (maybe a more accurate term would be "identification"), I'm far less likely to hold myself to neurotypical standards, and I find that so freeing.
Of course, my body is older, so it can't handle the stress it did when I was younger. That forced me to make lifestyle changes, and in a way, that was the best thing that could've happened to me. The only problem is the one I mentioned in the post. The rest of society just doesn't want to allow for the lifestyles of people who need something different.
Thanks for this post, Amy. It gives me a better understanding -- tip of the iceberg -- of what autistics endure every day. You are such an articulate and strong person. It's too bad more people don't have (for whatever reason) access to your substack. I think there would be more compassion in the world, and we definitely need more compassion. Pat
Thank you. That's such a kind thing to say. I think people don't come to my Substack because I don't do any of the things a person is supposed to do to attract and maintain readers. I'm not even sure what they are, but I know I'm not doing them.
Wow, I’m always impressed when you write about this stuff. It must be really damned hard, to live it and to write about it. But I’m guessing if you’re writing about it you’re on the upswing. Hope so anyway.
I am on the upswing, Tom, and I really appreciate you liking and commenting. I worked on this post for months. It's a lot longer than what I usually write. I usually post around 1000 words, and this was more than 3000. I just didn't feel like it could've been shorter, but maybe it's a bit much because I usually would've had a few more responses by now.
I know that it isn't always easy to leave timely comments (or, comment, at all). I often feel guilty because of the number of times I've not commented on friends posts, but sometimes, that's something that just can't be helped.
Yeah, I couldn't sleep last night because of itching and prickling, again. It was pretty intense, but it passed quickly. Now that I'm thinking about it, it's generally been not quite as bad in the past couple of weeks. About two weeks ago, I became more diligent about spiritual practices. I'm taking my meditation more seriously and journaling more seriously. I've been doing a daily yoga practice and studying a couple of yoga-sutras a day.
The sutras are not exactly spiritual. They're more intellectual, but it's still a practice in faith. Meaning, I don't know what it'll actually accomplish, but suspending disbelief is a spiritual practice in itself. It's a form of surrender, and I think the most interesting shifts happen when we are in a state of surrender.
It's only when I reach the end of my power am I willing to look to things that are bigger than me, but I guess it's better never doing it. These are the kinds of things that have helped me heal before.