Hi Tina, I’m so sorry that you’ve lost your Dad too. Thanks for sharing your invaluable insights. Crying spontaneously is something I’ve done all through life before I was diagnosed autistic, anxious and ADHD. Now that I’m on an SSRI and stimulant medication, it’s not happened for a few years. It’s good to know I too can spontaneously have a cathartic sob as it’s all part of processing grief and loss 😢
Ahh, someone else who uses the term death-dash -👊 and is autistic. I relate to all you say. I don’t really do meltdowns, and on the rare occasions I have I have spent so much energy trying to control them, to hide them etc. I think maybe once or twice as an adult. Shutdowns are me, I go mute, am robotic, only move when necessary, can be lead around - if I’m not on the sofa or bed it is very much a going through the motions like I’m looking in from outside my body. I don’t know if I’ve learnt much, (v.late diagnosed) other than shutdowns aren’t me sulking, I’m not ‘being’ belligerent or rude or nasty, if fact I’m lucky to be ‘being’ at all. When my father died a couple of years ago, (our death dash didn’t make it in time) I found my shutdown to be longer and more profound, I’m not sure if I really properly grieved for him (a difficult relationship) unlike when my mother died 20 odd years ago. But I think for my mum I was in and out of meltdown and it was dealing with her death that required me to stop and be more shutdown like - I’m not explaining it at all well so I hope you understand.
Anyways, I hope you manage to grieve well and allow yourself this time.
Looking in from outside your body, yes! Such a great description. A friend was saying the same thing about herself the other day.
I totally agree, there’s nothing rude or intentional in a shutdown. It’s not a choice. That’s why I forewarn whoever I’m with because naming something makes it more acceptable and less scary.
I do understand what you’re saying, and I empathise both with what you went through following your parents’ deaths and also in feeling you aren’t explaining it well. I never feel like I explain anything well at all, and I find using language quite insufficient to convey meaning. But it’s super frustrating because I don’t have an alternative. I feel like if autistic people had been grouped culturally through our evolution, we could have developed our own non-speaking communication system. Like how Deaf communities have developed sign languages. I wonder what our equivalent would be? Some sort of energy-sharing system? Now who’s not making any sense? 🤔 🙋♀️ 😹
Entering the shutdown/meltdown conversation...as a recent, late and lately-realised ADHD (aut?):
'Shutdown' seems to me the bottom end of necessary self-care, when things have gone too far, I am working on putting self-care in place, so I don't get that far down - 'widening my window of tolerance '. That should be easier for me, as a retired, with no dependents, than it is for you all still in the throes of children and elderly parents - but a lifetime of masking and coping strategies and habits, not to mention societal pressure to be 'active', mean it is still hard to negotiate.
And grief..yeah, be kind to yourselves, the loss of our parents equals the loss of our childhood, our hopes and dreams, taking on the 'grown up' mantle...as well as just MISSING them. Sending love out to you all xx
Thanks, Janey. I don’t think any of this comes intuitively to us, despite our age or circumstances, since we are all easing ourselves into the birthright of our autistic cultural identity. I appreciate your wisdom regarding grieving too 💕
This distinction between a shutdown and meltdown resonates a lot with me. It makes me think what I’ve been calling meltdowns are often actually shutdowns. Thank you for putting words to your experience - it makes me feel less alone. Now off to editing my post that’s coming out next week to add the word shutdown as well.
It’s taken me decades to see my smashing of objects was a meltdown and not just a rage. It’s great to be able to make these distinctions as we grow into our autistic selves. I hope your edit is nice and straightforward. And that there weren’t too many errors and typos in my post because editing it would have been a step too far for me last night!
I drew up a chart in my notebook whilst journaling yesterday, then transferred that to bullet point lists in Substack. That’s the only way I could get a post done yesterday, and I felt I’d already left it too late between publishing my last piece.
I think that format was beneficial to me as it was straightforward. It’s probably a better format for those of us who are visual, which is probably most autistics..? Maybe I should just stick with that for a while. It makes for a much simpler edit!
The distinction I had picked up from others was that a shutdown is (mostly) internal and a meltdown is (mostly) external. So I think I was stuck on the idea that if there is rocking, crying, anything externally visible involved, it must be a meltdown. I’m noticing my own black/white thinking here!
I definitely liked the format, it was easy to digest! It also sounds like it was a very authentic way for you to write, the way you needed it to happen in the moment, without embellishments. I wonder if that’s in part also what makes it easy to connect to.
Oh that’s so interesting because I have spent months trying to figure out a way to write about a medical treatment I’m about to undergo to control my perimenopausal fluctuations.
I think you’re right. I should just bullet point everything and hopefully it will be enough to share and inform. No point striving for perfection as there is no such thing!
"I drew up a chart in my notebook whilst journaling yesterday, then transferred that to bullet point lists in Substack."
Sam, I have been thinking *a lot* lately about how making charts, webs, and lists is actually a way I regulate having "too much" information in my brain at all times, because something I've noticed is that I will remake charts, webs, and lists that I already have--i.e. it's the MAKING of them, not the having of them, that is giving me something!
Your comment made me want to share this with you <3
Thanks for sharing! It’s definitely a less effortful way of processing for me. I have to read sentences over and over again to make sense of text in paragraph style. I will always default to the audio version of any Substack essay I want to read. I think it’s an important accommodation for us to have these options.
I remember when my sons were tiny. I homeschool them, but they cannot and will not be taught so it’s more like unschooling. I asked an educational psychologist to come and work with me and she practically had to deschool me! My son aged five at the time hated reader books (you know the reading schemes they use in school? 🥱) and would not engage. Yet he could take a Haynes manual of any vehicle of interest to him and absolutely devour the information, written and graphic, in a format that made sense to him.
We discredit ourselves by “failing” to fit the mould. Those readers are so tedious 😹
I used a mind map / web to get clarity on my writing the other day - it was also the process for me. There was so much there to consider - information, emotions, people in my life, my own (dis)comfort, the reader…. Drawing it out on paper helped me untangle it all. While I have digital lists, using pen and paper is most calming/ regulating for me.
'..making charts, webs, and lists is actually a way I regulate having "too much" information in my brain at all times...'
You've articulated something I kinda knew but hadn't put into words yet. I find having charts and lists helpful too, but it is the making of them that I find soothing and regulating.
Making lists and charts is basically what my bullet journal is. I spend time on it every day. Quite a lot of time over the course of a week. I think some people would think it was a waste of time (when I could just use a normal diary), but it is incredibly soothing to me.
I have a post about my bullet journal in draft that I'm planning to schedule for the end of August...
I'm sorry for your loss. I think autistic do grief differently and intensely - maybe cycling through phases of shutdown and inertia, even meltdown.
You describe the minutiae of each experience very well. Like you, my kid's meltdowns trigger my shutdowns. And it feels hard because I can't be there to help him through the aftermath. Like, how can I coregulate when I'm dysregulated myself?!
Thanks, Julie. I think you’re right, we do cycle through these phases in grief. That’s a great point. I think that would explain why I function most of the day, getting my children to their therapies, play dates, classes etc. then, once I can offload them to screentime, I crumple in a heap and I’m done for the day. Makes sense! Aren’t we amazing? I’m sure by the time your son has had a meltdown, you help him with the initial “aftermath” (for want of a better word!), then I’m sure you’re modelling a shutdown to him as an alternative. I think we do them an enormous favour leaning into these different states. As long as we name them, they will understand them in themselves too. I think it’s all part of overcoming intergenerational trauma of repressed neurodivergence, and developing our autistic culture. It’s a beautiful thing 💕
Thank you for writing this Sam, when things are so hard for you right now. I recognise all of these states, but I haven't been aware of my own ADHD and autism for long enough to have figured out what is going on and when for me.
And I wish I could tell you how I handled grief. I think I mainly didn't...
Thanks, Emma. It’s so confronting in the early stages of finding out that we are neurodivergent, but it all rapidly becomes liberating in my experience 💕
When my Dad passed away several years ago I coped with the grief by crying at random unexpected times. It felt like a healthy cry. A release of emotion and healing in a way. After I go away on a holiday or trip I do experience a period of complete exhaustion. I used to have a pattern before I had my son to spend all day in bed, or doing nothing to recover from the socialising or overstimulation. When I over extended myself I was prone to what I always thought of or named depression which is as your describing it. A shutdown. I think your right, its protective and gives us a chance to recover. Now I realise it wasnt depression it was me trying to fit into a neurotypical world, going too hard out and then experiencing burnout from that. Now I try and pace myself but there are some circumstances like for example the one you've been through where you cant possibly plan for that or pace yourself. So I think your right, to be kind to yourself and ride out the shutdown without guilt because what can you do? Well done for going back at such short notice to see your Dad and family I'm sure you were a huge support. I think putting language to these experiences and trying to explain them helps us to re write the negative self talk and bs that have affected us and hopefully creates change for how pur children view themselves. I have adhd and relate to a lot of what you said, meltdowns I would just say loosing the plot. Verbally I would be mean without wanting to be to anyone around. Its overwhelm. Doesnt happen these days but in my 20s I was learning to have better emotional regulstion. The inertia you experience though I have either the paralysis or I cant stop moving about and pinging from task to task. I find it easier to change things perhaps but harder to stay on task. There is certainly a movement component for ND people and perhaps not one box or label for us.
Grief is absolutely exhausting. I certainly take longer to process events and emotions which I think is a result of neurodivergence. Shutdowns etc I think are a protective mechanism to stop the overwhelm. I hope you are able to go gently with yourself and give yourself the time and space to grieve in a way you need to x
I've started to learn that there's this emotional feeling that wells up in me, almost like I'm going to cry, when I read something that is telling me something true about myself. I felt that reading your lists! This was so helpful, and I feel almost...excited? (or something weirder than excitement) for the day when I, too, have a better grasp on the distinction between my own shutdowns and meltdowns. Thank you for playing a huge part in me moving in that direction!
Oh Sam, thank you for recommending this to me on your other posts. I didn't know you were grieving too. This is so helpful. No need to reply as I know you are doing bedtime!
Hi Rachel! I’m glad it was helpful. Thinking of you. I’m so sorry to hear about your Dad 😭
It was a very difficult time for me. I hadn’t travelled long haul for a long time, and never flown around the world alone. I cried the entire way there but managed to advocate for Dad in his dying days in hospital. I had a bleed, and have had another one when my Mum’s holiday ended and she flew back to the UK.
It’s crazy to me how my hormones dominate my emotions, and vice versa.
First of all, so sorry to hear about your loss. I can only imagine the exhaustion that has sent you into as an autistic person. It was so helpful for me to read this, and I really appreciate you writing it, especially as you're dealing with so much! I've been dealing with really bad burnout/shutdown since finishing my PhD (which coincided with some other big life changes- being diagnosed with a chronic illness, moving to a new city, getting married). I still feel really guilty/extremely frustrated with myself for autistic shutdowns and lack inertia. Having you reframe it as something I can learn from is genuinely so helpful. Even though I know this is bad in the long run, I still have this tendency to want to just force myself (even though I know that is not really possible) out of a shutdown, inertia, or apathy issue. Reframing it as being a sign that I need to readjust or change something in my life is so helpful.
Hi Laney, thanks for reaching out. I’m so sorry you’ve had a rough time lately. Congratulations on your wedding and your PhD, wow! No wonder you need a break! It’s funny how our autistic bodies shut themselves down if we are unable to regulate ourselves consistently. Mine is still the same and it frustrating. What was your PhD thesis question/topic? :)
It is so frustrating! Something I’ve realized lately is that sometimes if I’m having a lot of fun (at a party or something like that), I don’t notice when I’m overstimulated until it’s too late, then I crash for a few days. It’s so hard to stay regulated! And thank you for all the congratulations!! It’s been a very busy few years for me! My PhD was basically about how ways of remembering the past (both more kind of official histories and more personal things, like oral history projects) can be a step towards radical future change if approached from an anarchist perspective.
Totally understand about the party overwhelm. Have you heard of social hangovers? They are caused by autistics having social engagements and then requiring rest from all socialising for days afterwards. Lean into them :)
Thank you!! Currently in the process of trying to turn it into a shorter book for a non-academic publisher (fingers crossed!), still need to get the book proposal together.
I really needed to hear that I should lean into the social hangover! I don't drink alcohol at all any more, but I did literally feel hungover the day after the wedding. I haven't pursued a diagnosis yet, but I think I am probably an AuDHDer, so I suspect that I sometimes seek out stimulation only to end up tipping over the edge of what I can handle and getting very overstimulated.
Grief can be overwhelming, especially when you're neurodivergent, and it makes sense that you’re feeling drained. The way you describe these different states—shutdowns, meltdowns, inertia—really shows how you’re protecting yourself. It’s okay to take the time you need to process everything. You’re doing the best you can, and that’s enough.
How are you feeling today? I know it's been a bit since you posted this, but I was thinking of you earlier.
Oh thanks for asking, sorry I’ve only just seen your message here :)
Grief wise, I think I’m going okay. Been listening to Cariad Lloyd’s podcast called Griefcast and really appreciated the Katherine May episode. I want to listen to the others too over time.
I had my chemical menopause implanted yesterday so feeling fairly crappy. Today was supposedly a rest day as my calendar is rammed with the kids’ appointments and commitments. Tomorrow will be busy with occupational therapy and hospital appointments. But I am hoping to get some writing in.
The hardest thing is the inertia and not having the focus to write. All I can do is doom scroll my phone. Urgh. Feels awful but I guess it’s an (unhealthy) coping mechanism 🤷🏻♀️
I’m glad you’re doing a bit better. Don’t worry about not having the energy to write or whatever. You went through something emotional and taxing at times, and you need time to recover and get in your rhythm again. There’s no time limit on that. We’re just happy you’re here.
I am so sorry for your loss. Losing our parents is a terrible thing. I also want to thank you for your eloquent descriptions of your own shutdown, inertia, and meltdowns. As a parent of an autistic kid, I have so very much to learn from voices like yours, and I will be a better parent for your insights. Thank you.
Hi Tina, I’m so sorry that you’ve lost your Dad too. Thanks for sharing your invaluable insights. Crying spontaneously is something I’ve done all through life before I was diagnosed autistic, anxious and ADHD. Now that I’m on an SSRI and stimulant medication, it’s not happened for a few years. It’s good to know I too can spontaneously have a cathartic sob as it’s all part of processing grief and loss 😢
Ahh, someone else who uses the term death-dash -👊 and is autistic. I relate to all you say. I don’t really do meltdowns, and on the rare occasions I have I have spent so much energy trying to control them, to hide them etc. I think maybe once or twice as an adult. Shutdowns are me, I go mute, am robotic, only move when necessary, can be lead around - if I’m not on the sofa or bed it is very much a going through the motions like I’m looking in from outside my body. I don’t know if I’ve learnt much, (v.late diagnosed) other than shutdowns aren’t me sulking, I’m not ‘being’ belligerent or rude or nasty, if fact I’m lucky to be ‘being’ at all. When my father died a couple of years ago, (our death dash didn’t make it in time) I found my shutdown to be longer and more profound, I’m not sure if I really properly grieved for him (a difficult relationship) unlike when my mother died 20 odd years ago. But I think for my mum I was in and out of meltdown and it was dealing with her death that required me to stop and be more shutdown like - I’m not explaining it at all well so I hope you understand.
Anyways, I hope you manage to grieve well and allow yourself this time.
Looking in from outside your body, yes! Such a great description. A friend was saying the same thing about herself the other day.
I totally agree, there’s nothing rude or intentional in a shutdown. It’s not a choice. That’s why I forewarn whoever I’m with because naming something makes it more acceptable and less scary.
I do understand what you’re saying, and I empathise both with what you went through following your parents’ deaths and also in feeling you aren’t explaining it well. I never feel like I explain anything well at all, and I find using language quite insufficient to convey meaning. But it’s super frustrating because I don’t have an alternative. I feel like if autistic people had been grouped culturally through our evolution, we could have developed our own non-speaking communication system. Like how Deaf communities have developed sign languages. I wonder what our equivalent would be? Some sort of energy-sharing system? Now who’s not making any sense? 🤔 🙋♀️ 😹
Hang on though, you DID explain yourself well and I understood what you meant 😊
Entering the shutdown/meltdown conversation...as a recent, late and lately-realised ADHD (aut?):
'Shutdown' seems to me the bottom end of necessary self-care, when things have gone too far, I am working on putting self-care in place, so I don't get that far down - 'widening my window of tolerance '. That should be easier for me, as a retired, with no dependents, than it is for you all still in the throes of children and elderly parents - but a lifetime of masking and coping strategies and habits, not to mention societal pressure to be 'active', mean it is still hard to negotiate.
And grief..yeah, be kind to yourselves, the loss of our parents equals the loss of our childhood, our hopes and dreams, taking on the 'grown up' mantle...as well as just MISSING them. Sending love out to you all xx
Thanks, Janey. I don’t think any of this comes intuitively to us, despite our age or circumstances, since we are all easing ourselves into the birthright of our autistic cultural identity. I appreciate your wisdom regarding grieving too 💕
This distinction between a shutdown and meltdown resonates a lot with me. It makes me think what I’ve been calling meltdowns are often actually shutdowns. Thank you for putting words to your experience - it makes me feel less alone. Now off to editing my post that’s coming out next week to add the word shutdown as well.
It’s taken me decades to see my smashing of objects was a meltdown and not just a rage. It’s great to be able to make these distinctions as we grow into our autistic selves. I hope your edit is nice and straightforward. And that there weren’t too many errors and typos in my post because editing it would have been a step too far for me last night!
I drew up a chart in my notebook whilst journaling yesterday, then transferred that to bullet point lists in Substack. That’s the only way I could get a post done yesterday, and I felt I’d already left it too late between publishing my last piece.
I think that format was beneficial to me as it was straightforward. It’s probably a better format for those of us who are visual, which is probably most autistics..? Maybe I should just stick with that for a while. It makes for a much simpler edit!
Sorry. Massive tangent there, ha ha!
The distinction I had picked up from others was that a shutdown is (mostly) internal and a meltdown is (mostly) external. So I think I was stuck on the idea that if there is rocking, crying, anything externally visible involved, it must be a meltdown. I’m noticing my own black/white thinking here!
I definitely liked the format, it was easy to digest! It also sounds like it was a very authentic way for you to write, the way you needed it to happen in the moment, without embellishments. I wonder if that’s in part also what makes it easy to connect to.
Oh that’s so interesting because I have spent months trying to figure out a way to write about a medical treatment I’m about to undergo to control my perimenopausal fluctuations.
I think you’re right. I should just bullet point everything and hopefully it will be enough to share and inform. No point striving for perfection as there is no such thing!
I love that last point so much, Hanna! How sometimes the energy of making also comes through into the energy of reading.
"I drew up a chart in my notebook whilst journaling yesterday, then transferred that to bullet point lists in Substack."
Sam, I have been thinking *a lot* lately about how making charts, webs, and lists is actually a way I regulate having "too much" information in my brain at all times, because something I've noticed is that I will remake charts, webs, and lists that I already have--i.e. it's the MAKING of them, not the having of them, that is giving me something!
Your comment made me want to share this with you <3
Thanks for sharing! It’s definitely a less effortful way of processing for me. I have to read sentences over and over again to make sense of text in paragraph style. I will always default to the audio version of any Substack essay I want to read. I think it’s an important accommodation for us to have these options.
I remember when my sons were tiny. I homeschool them, but they cannot and will not be taught so it’s more like unschooling. I asked an educational psychologist to come and work with me and she practically had to deschool me! My son aged five at the time hated reader books (you know the reading schemes they use in school? 🥱) and would not engage. Yet he could take a Haynes manual of any vehicle of interest to him and absolutely devour the information, written and graphic, in a format that made sense to him.
We discredit ourselves by “failing” to fit the mould. Those readers are so tedious 😹
I used a mind map / web to get clarity on my writing the other day - it was also the process for me. There was so much there to consider - information, emotions, people in my life, my own (dis)comfort, the reader…. Drawing it out on paper helped me untangle it all. While I have digital lists, using pen and paper is most calming/ regulating for me.
Exactly! Pen against paper = stim, too.
Sarah, thank you!
'..making charts, webs, and lists is actually a way I regulate having "too much" information in my brain at all times...'
You've articulated something I kinda knew but hadn't put into words yet. I find having charts and lists helpful too, but it is the making of them that I find soothing and regulating.
This makes me so happy, Emma! Maybe we need a "parallel list/chart-making" session sometime...
Can I gate crash please? This sounds like my kind of A Good Time! 😆 🤘 ✍️ 📝
Making lists and charts is basically what my bullet journal is. I spend time on it every day. Quite a lot of time over the course of a week. I think some people would think it was a waste of time (when I could just use a normal diary), but it is incredibly soothing to me.
I have a post about my bullet journal in draft that I'm planning to schedule for the end of August...
Writing lists can be super stimmy and wonderful 💕
And nothing beats writing in a task you’ve just completed onto a list and immediately ticking it off ✅ 👌
YES!
I'm sorry for your loss. I think autistic do grief differently and intensely - maybe cycling through phases of shutdown and inertia, even meltdown.
You describe the minutiae of each experience very well. Like you, my kid's meltdowns trigger my shutdowns. And it feels hard because I can't be there to help him through the aftermath. Like, how can I coregulate when I'm dysregulated myself?!
Thanks, Julie. I think you’re right, we do cycle through these phases in grief. That’s a great point. I think that would explain why I function most of the day, getting my children to their therapies, play dates, classes etc. then, once I can offload them to screentime, I crumple in a heap and I’m done for the day. Makes sense! Aren’t we amazing? I’m sure by the time your son has had a meltdown, you help him with the initial “aftermath” (for want of a better word!), then I’m sure you’re modelling a shutdown to him as an alternative. I think we do them an enormous favour leaning into these different states. As long as we name them, they will understand them in themselves too. I think it’s all part of overcoming intergenerational trauma of repressed neurodivergence, and developing our autistic culture. It’s a beautiful thing 💕
Thank you for writing this Sam, when things are so hard for you right now. I recognise all of these states, but I haven't been aware of my own ADHD and autism for long enough to have figured out what is going on and when for me.
And I wish I could tell you how I handled grief. I think I mainly didn't...
Thanks, Emma. It’s so confronting in the early stages of finding out that we are neurodivergent, but it all rapidly becomes liberating in my experience 💕
When my Dad passed away several years ago I coped with the grief by crying at random unexpected times. It felt like a healthy cry. A release of emotion and healing in a way. After I go away on a holiday or trip I do experience a period of complete exhaustion. I used to have a pattern before I had my son to spend all day in bed, or doing nothing to recover from the socialising or overstimulation. When I over extended myself I was prone to what I always thought of or named depression which is as your describing it. A shutdown. I think your right, its protective and gives us a chance to recover. Now I realise it wasnt depression it was me trying to fit into a neurotypical world, going too hard out and then experiencing burnout from that. Now I try and pace myself but there are some circumstances like for example the one you've been through where you cant possibly plan for that or pace yourself. So I think your right, to be kind to yourself and ride out the shutdown without guilt because what can you do? Well done for going back at such short notice to see your Dad and family I'm sure you were a huge support. I think putting language to these experiences and trying to explain them helps us to re write the negative self talk and bs that have affected us and hopefully creates change for how pur children view themselves. I have adhd and relate to a lot of what you said, meltdowns I would just say loosing the plot. Verbally I would be mean without wanting to be to anyone around. Its overwhelm. Doesnt happen these days but in my 20s I was learning to have better emotional regulstion. The inertia you experience though I have either the paralysis or I cant stop moving about and pinging from task to task. I find it easier to change things perhaps but harder to stay on task. There is certainly a movement component for ND people and perhaps not one box or label for us.
Grief is absolutely exhausting. I certainly take longer to process events and emotions which I think is a result of neurodivergence. Shutdowns etc I think are a protective mechanism to stop the overwhelm. I hope you are able to go gently with yourself and give yourself the time and space to grieve in a way you need to x
Thank you! You’re right, shutdowns definitely need reframing into a positive necessity to maintain our equilibrium 😊
I've started to learn that there's this emotional feeling that wells up in me, almost like I'm going to cry, when I read something that is telling me something true about myself. I felt that reading your lists! This was so helpful, and I feel almost...excited? (or something weirder than excitement) for the day when I, too, have a better grasp on the distinction between my own shutdowns and meltdowns. Thank you for playing a huge part in me moving in that direction!
Oh that’s so lovely, thanks Sarah! 💕
Oh Sam, thank you for recommending this to me on your other posts. I didn't know you were grieving too. This is so helpful. No need to reply as I know you are doing bedtime!
Hi Rachel! I’m glad it was helpful. Thinking of you. I’m so sorry to hear about your Dad 😭
It was a very difficult time for me. I hadn’t travelled long haul for a long time, and never flown around the world alone. I cried the entire way there but managed to advocate for Dad in his dying days in hospital. I had a bleed, and have had another one when my Mum’s holiday ended and she flew back to the UK.
It’s crazy to me how my hormones dominate my emotions, and vice versa.
How are you feeling today? 💐
The time of passing is such a huge moment, so much going on I'm amazed our bodies cope, so not surprised certain parts have tantrums.
I ended up with a POTS flare up yesterday so spent most of the day horizontal, hoping I can at least be vertical today. Thanks again.
I hope you are feeling a bit better today x
First of all, so sorry to hear about your loss. I can only imagine the exhaustion that has sent you into as an autistic person. It was so helpful for me to read this, and I really appreciate you writing it, especially as you're dealing with so much! I've been dealing with really bad burnout/shutdown since finishing my PhD (which coincided with some other big life changes- being diagnosed with a chronic illness, moving to a new city, getting married). I still feel really guilty/extremely frustrated with myself for autistic shutdowns and lack inertia. Having you reframe it as something I can learn from is genuinely so helpful. Even though I know this is bad in the long run, I still have this tendency to want to just force myself (even though I know that is not really possible) out of a shutdown, inertia, or apathy issue. Reframing it as being a sign that I need to readjust or change something in my life is so helpful.
Hi Laney, thanks for reaching out. I’m so sorry you’ve had a rough time lately. Congratulations on your wedding and your PhD, wow! No wonder you need a break! It’s funny how our autistic bodies shut themselves down if we are unable to regulate ourselves consistently. Mine is still the same and it frustrating. What was your PhD thesis question/topic? :)
It is so frustrating! Something I’ve realized lately is that sometimes if I’m having a lot of fun (at a party or something like that), I don’t notice when I’m overstimulated until it’s too late, then I crash for a few days. It’s so hard to stay regulated! And thank you for all the congratulations!! It’s been a very busy few years for me! My PhD was basically about how ways of remembering the past (both more kind of official histories and more personal things, like oral history projects) can be a step towards radical future change if approached from an anarchist perspective.
Oh your thesis sounds EPIC! 🎓
Totally understand about the party overwhelm. Have you heard of social hangovers? They are caused by autistics having social engagements and then requiring rest from all socialising for days afterwards. Lean into them :)
Thank you!! Currently in the process of trying to turn it into a shorter book for a non-academic publisher (fingers crossed!), still need to get the book proposal together.
I really needed to hear that I should lean into the social hangover! I don't drink alcohol at all any more, but I did literally feel hungover the day after the wedding. I haven't pursued a diagnosis yet, but I think I am probably an AuDHDer, so I suspect that I sometimes seek out stimulation only to end up tipping over the edge of what I can handle and getting very overstimulated.
Grief can be overwhelming, especially when you're neurodivergent, and it makes sense that you’re feeling drained. The way you describe these different states—shutdowns, meltdowns, inertia—really shows how you’re protecting yourself. It’s okay to take the time you need to process everything. You’re doing the best you can, and that’s enough.
How are you feeling today? I know it's been a bit since you posted this, but I was thinking of you earlier.
Oh thanks for asking, sorry I’ve only just seen your message here :)
Grief wise, I think I’m going okay. Been listening to Cariad Lloyd’s podcast called Griefcast and really appreciated the Katherine May episode. I want to listen to the others too over time.
I had my chemical menopause implanted yesterday so feeling fairly crappy. Today was supposedly a rest day as my calendar is rammed with the kids’ appointments and commitments. Tomorrow will be busy with occupational therapy and hospital appointments. But I am hoping to get some writing in.
The hardest thing is the inertia and not having the focus to write. All I can do is doom scroll my phone. Urgh. Feels awful but I guess it’s an (unhealthy) coping mechanism 🤷🏻♀️
I’m glad you’re doing a bit better. Don’t worry about not having the energy to write or whatever. You went through something emotional and taxing at times, and you need time to recover and get in your rhythm again. There’s no time limit on that. We’re just happy you’re here.
Thanks, lovely 🥰
I am so sorry for your loss. Losing our parents is a terrible thing. I also want to thank you for your eloquent descriptions of your own shutdown, inertia, and meltdowns. As a parent of an autistic kid, I have so very much to learn from voices like yours, and I will be a better parent for your insights. Thank you.
Thanks for your kind words, Emily 💕