Thank you so much for this, Sarah. Last year I shaved half of my head because figuring out where to part my hair became Too Much For Me, so yeah, I'd say I've regressed a bit, LOL! It's frustrating. But thank you for this reminder to be kind to myself--and to BE myself.
Whew! Reading your essay twice resulted in five journal pages of thoughts. Thank you for sharing your thoughts and perspective. I’m five years into realizing I’m autistic, and I’ve barely scratched the surface of discovering what is actually good for me and what has been trained into me.
HECK YEAH, KAT! Omg, I have always thought the best thing to hear as a writer is not even "wow this was good" or "beautiful words" or anything like that, but rather, "this made me (want to) write."
I am so happy you turned to the page after spending time with this. I hope fruitful things keep unfolding for you, Kat.
This essay put to words feelings I've had but didn't understand. I also realized I never understood the word "regression" when it comes to autistic diagnosis. I don't think it's an accurate word for what's going on. Thank you!
This felt so good to read. I was diagnosed toward the end of 2022 and am now able to do much less than before, and I'm still grappling with it all. I just started paperwork to apply for disability yesterday, and having to pathologize myself in order to prove I am unable to work a "regular" job is so frustrating. Reminders like this help so much.
“Sometimes I wonder if my tendency to analyze (#actuallyautistic), paired with my tendency to intellectualize (#academicwounds), paired with the 20-year-old feeling that I am someone who lives entirely inside their head (#C-PTSD), has kept me reading my troubles rather than feeling and experiencing them.”
Damn. Hi, it’s me. Also, your line about skills regression being the body responding to increased care bout made me cry.
I think for me, the analogy that best helped me to begin to accept it was to think of my “skills” as literal parts of a costume that I no longer wore, and therefore had to learn to do those skills with my very own body instead of the costume….or just let the skill go, cast off with the costume unless I really really need it some day. But then there’s no question of it being a mask and not me.
I recently read another substack (I’ll look for it and come back with it) where she wrote “Attuned care is our birthright.” She wrote in the context of responding to babies and how our current system conflicts with that, but it hit my head deep….i believe that, and I believe we each deserve to have attuned care from ourselves in addition to the others, as the default.
So of course all of this has led me to examining late stage capitalism and white supremacy and colonization and high control religion and how all of it perpetuates harm under the guise of this is what you really need, in order to keep them in power and the rest of us so sick and crushed we can’t possibly resist. (These are not my own ideas, these are the brilliant ideas of those who’ve understood this from the start, mostly Black and Brown men and women and other disabled folks.) all of it has made me less worried about losing my mask and more indignant and ready to take it off. And to make damn sure my children do not feel the need to embody a mask as the default.
Practical things that have helped me:
- noticing when my internal voice shrilly repeats the lies that keep me masked, turning to her and saying thank you for keeping me safe all these years…but we don’t have to believe that or listen to that anymore. You can rest, I’ve got this.
- listening to when my body/brain is tired and letting it shut off in a quiet cool room where I lay down, maybe even sleep. If I absolutely cannot do it in that moment, I cancel whatever I can, reduce the environmental stimuli and slow my pace until I can lay down. Usually leads to multiple internal conversations from the previous point before I can actually be still and quiet.
- noticing when I’ve curled up into my head and left my body like a meat suit - gently bringing myself back to her with a cold or hot drink, sunshine, washing my hands with a sugar scrub, etc.
- finding things that make me smile involuntarily and doing them for a bit everyday. Currently the scavenger hunts on the Two Dots app that I do before bed.
- following Hillary Ann McBride and reading her works
- following Cole Arthur Riley and Black Liturgies and reading her work daily.
- always reading this substack with a coffee in hand and sunshine, ready to be encouraged and inspired. Truly.
Also, love that I could leave an essay length comment and not once worry about whether it was appropriate for the context. I love that as autistics we love what we love and we let others do the same.
Sarah! Thank you for this beautiful synthesis and generous share. There's so much goodness here; I'm especially moved by the context you create around this word, "indignant." And how becoming *indignant* about our own masks can be, actually, a really celebratory and accomplished feeling-place to be.
Ahhhh, I will have to sit with this a while and ponder -- thank you so much for sharing! I feel like I was on this path for a time, really considering that I might be autistic/some kind of neurodivergent. I took SO many assessments (online and one from a therapist I was seeing), read books and articles, talked to a trusted friend about the possibility (made sense to her), and started trying to give myself accommodations. Then I got freaked out? overwhelmed? felt this "regression" and started building those masks up again and hardening the callouses. Jearimy bearimy, baby, I'm riding all the loopty loops and crazy squiggles of time and healing.
"Sometimes I wonder if a common consequence of being highly masked is that you learn to only spot your needs in their most extreme iterations....I wonder if, once we start meeting said needs sooner, in their earlier, softer iterations, we mistakenly read this as regression."
Whew, this is worth at least a whole therapy session on its own. Thank you.
Gosh, thank you so much for this!!! I have felt so many of these same things! I wonder all the time how I was able to hold it together for so long and that, because I can’t anymore, then I must be a fraud either then or now. I know that’s not the truth, but I constantly have to process through those feelings. This article gave me another level of permission to ignore those doubts and questions of my integrity when they come up. Sincerely. Thank you for writing this!
So beautiful and very resonant! “Regression” never felt right when applied to baby development either, those phases almost always came right before a developmental leap. May we all have many leaps ahead of learning how to listen to our bodies more deeply and creating the kind of safety that allows us to more fully experience our lives. ❤️
On a personal level, I wonder how my skills regression is actually unrecognized depression, as sometimes I don’t realize I’ve been depressed until I’m no longer depressed and I look back.
I really appreciate this question, Charlotte. I think neurodivergent pacing is such a real thing for so many of us, and I think it often results in us struggling to know things *beforehand* or even *during,* and instead only reaching the full scope of our understanding *after-the-fact.* I'm talking about more than mere hindsight here...for me, it's something about the time and space my brain needs in order to fully understand what's present. Anyway, this is all to say: Thank you for bringing another layer into the conversation.
I was (finally) diagnosed as AuDHD in March at age 35. I have seen so many skill regressions since then. I used to be so skilled at masking, and I’m currently in a place where “functioning in society” feels like too big of an ask. This post was the reminder I needed to reframe what’s going on.
Thank you so much for this, Sarah. Last year I shaved half of my head because figuring out where to part my hair became Too Much For Me, so yeah, I'd say I've regressed a bit, LOL! It's frustrating. But thank you for this reminder to be kind to myself--and to BE myself.
Wow do I relate.
Thank you so much for reading, Bethany!
Whew! Reading your essay twice resulted in five journal pages of thoughts. Thank you for sharing your thoughts and perspective. I’m five years into realizing I’m autistic, and I’ve barely scratched the surface of discovering what is actually good for me and what has been trained into me.
HECK YEAH, KAT! Omg, I have always thought the best thing to hear as a writer is not even "wow this was good" or "beautiful words" or anything like that, but rather, "this made me (want to) write."
I am so happy you turned to the page after spending time with this. I hope fruitful things keep unfolding for you, Kat.
This essay put to words feelings I've had but didn't understand. I also realized I never understood the word "regression" when it comes to autistic diagnosis. I don't think it's an accurate word for what's going on. Thank you!
I'm so happy to hear this, Melissa <3 Thank you for reading!
This felt so good to read. I was diagnosed toward the end of 2022 and am now able to do much less than before, and I'm still grappling with it all. I just started paperwork to apply for disability yesterday, and having to pathologize myself in order to prove I am unable to work a "regular" job is so frustrating. Reminders like this help so much.
I'm so grateful for the timing of this, friend. And that it's giving you a reminder you need while navigating such a fraught process.
Sending *lots* of warmth and fortitude your way. And self-trust.
“Sometimes I wonder if my tendency to analyze (#actuallyautistic), paired with my tendency to intellectualize (#academicwounds), paired with the 20-year-old feeling that I am someone who lives entirely inside their head (#C-PTSD), has kept me reading my troubles rather than feeling and experiencing them.”
Damn. Hi, it’s me. Also, your line about skills regression being the body responding to increased care bout made me cry.
Thank you for this.
I think for me, the analogy that best helped me to begin to accept it was to think of my “skills” as literal parts of a costume that I no longer wore, and therefore had to learn to do those skills with my very own body instead of the costume….or just let the skill go, cast off with the costume unless I really really need it some day. But then there’s no question of it being a mask and not me.
I recently read another substack (I’ll look for it and come back with it) where she wrote “Attuned care is our birthright.” She wrote in the context of responding to babies and how our current system conflicts with that, but it hit my head deep….i believe that, and I believe we each deserve to have attuned care from ourselves in addition to the others, as the default.
So of course all of this has led me to examining late stage capitalism and white supremacy and colonization and high control religion and how all of it perpetuates harm under the guise of this is what you really need, in order to keep them in power and the rest of us so sick and crushed we can’t possibly resist. (These are not my own ideas, these are the brilliant ideas of those who’ve understood this from the start, mostly Black and Brown men and women and other disabled folks.) all of it has made me less worried about losing my mask and more indignant and ready to take it off. And to make damn sure my children do not feel the need to embody a mask as the default.
Practical things that have helped me:
- noticing when my internal voice shrilly repeats the lies that keep me masked, turning to her and saying thank you for keeping me safe all these years…but we don’t have to believe that or listen to that anymore. You can rest, I’ve got this.
- listening to when my body/brain is tired and letting it shut off in a quiet cool room where I lay down, maybe even sleep. If I absolutely cannot do it in that moment, I cancel whatever I can, reduce the environmental stimuli and slow my pace until I can lay down. Usually leads to multiple internal conversations from the previous point before I can actually be still and quiet.
- noticing when I’ve curled up into my head and left my body like a meat suit - gently bringing myself back to her with a cold or hot drink, sunshine, washing my hands with a sugar scrub, etc.
- finding things that make me smile involuntarily and doing them for a bit everyday. Currently the scavenger hunts on the Two Dots app that I do before bed.
- following Hillary Ann McBride and reading her works
- following Cole Arthur Riley and Black Liturgies and reading her work daily.
- always reading this substack with a coffee in hand and sunshine, ready to be encouraged and inspired. Truly.
Here’s the substack I mention: https://open.substack.com/pub/goodnightmoonchild/p/weve-lost-the-plot?r=1vo5p&utm_medium=ios
Also, love that I could leave an essay length comment and not once worry about whether it was appropriate for the context. I love that as autistics we love what we love and we let others do the same.
Sarah! Thank you for this beautiful synthesis and generous share. There's so much goodness here; I'm especially moved by the context you create around this word, "indignant." And how becoming *indignant* about our own masks can be, actually, a really celebratory and accomplished feeling-place to be.
Damn did I need this today.
!!!
Ahhhh, I will have to sit with this a while and ponder -- thank you so much for sharing! I feel like I was on this path for a time, really considering that I might be autistic/some kind of neurodivergent. I took SO many assessments (online and one from a therapist I was seeing), read books and articles, talked to a trusted friend about the possibility (made sense to her), and started trying to give myself accommodations. Then I got freaked out? overwhelmed? felt this "regression" and started building those masks up again and hardening the callouses. Jearimy bearimy, baby, I'm riding all the loopty loops and crazy squiggles of time and healing.
"Sometimes I wonder if a common consequence of being highly masked is that you learn to only spot your needs in their most extreme iterations....I wonder if, once we start meeting said needs sooner, in their earlier, softer iterations, we mistakenly read this as regression."
Whew, this is worth at least a whole therapy session on its own. Thank you.
Ahh, I'm so glad to hear this. Thank you for reading & taking a moment to let me know how well it's landing <3
Gosh, thank you so much for this!!! I have felt so many of these same things! I wonder all the time how I was able to hold it together for so long and that, because I can’t anymore, then I must be a fraud either then or now. I know that’s not the truth, but I constantly have to process through those feelings. This article gave me another level of permission to ignore those doubts and questions of my integrity when they come up. Sincerely. Thank you for writing this!
This comment means so much to me, Hannah. I'm grateful for your readership (which gives me permission in return <3).
So beautiful and very resonant! “Regression” never felt right when applied to baby development either, those phases almost always came right before a developmental leap. May we all have many leaps ahead of learning how to listen to our bodies more deeply and creating the kind of safety that allows us to more fully experience our lives. ❤️
On a personal level, I wonder how my skills regression is actually unrecognized depression, as sometimes I don’t realize I’ve been depressed until I’m no longer depressed and I look back.
I really appreciate this question, Charlotte. I think neurodivergent pacing is such a real thing for so many of us, and I think it often results in us struggling to know things *beforehand* or even *during,* and instead only reaching the full scope of our understanding *after-the-fact.* I'm talking about more than mere hindsight here...for me, it's something about the time and space my brain needs in order to fully understand what's present. Anyway, this is all to say: Thank you for bringing another layer into the conversation.
Yes! I agree. Just like speaking our thoughts, there is sometimes a delay in realizing our emotional state, at least for me…
I was (finally) diagnosed as AuDHD in March at age 35. I have seen so many skill regressions since then. I used to be so skilled at masking, and I’m currently in a place where “functioning in society” feels like too big of an ask. This post was the reminder I needed to reframe what’s going on.
Hooray, Lisa! Congrats on your diagnosis and your growing clarity.
Oh yes, this is exactly what I've been needing to hear.
<3!