I'm not a parent, but I wanted to say thank you for writing this. I've never read a post this detailed about what it's like to be an autistic parent/carer, and you illustrated it quite wonderfully. I've always wondered about this. You sound like an excellent mother, and your kids are so incredibly lucky.
Hey there. Just wanted to witness and tell you I see you. I'm autistic, in perimenopause, homeschooling two autistic kiddies, solo parenting, and just started experiencing catatonia deterioration. I'm in California so I got some short term disability thankfully, but I know I'm going to have to go back to work at some point and I don't know how. I can't even vacuum a room right now without being down the rest of the day (and this is on meds). I just barely started being able to read and write again - brain fog is no joke. My heart goes out to you.
Hi Bel, thanks so much for reaching out. I’m so sorry you are going through so much at once. Please reach out in messages if you’d like us to discuss anything further. I know how it feels to be facing many although not all of your challenges. It’s so hard, isn’t it? But I dug so deep from I have no idea where and managed to cope and actually almost thrive in the face of my Dad’s sudden decline. I think it was being bolstered by my extended family who I’ve not seen for a few years. The highs balanced out the lows. Just like being twice exceptional/2e can make us even out of major difficulties against our intellect. I don’t know how it works but somehow it does because we are amazing! I’d be so happy to chat via messages if you would like to, although no pressure if that makes you feel uncomfortable. Please don’t feel alone on this journey 💕
Sorry, I’m too tired to correct the typo as there’s no edit function. I hope Substack add that function soon 🤦🏽♀️
I think what I was trying to say is that our intellect can counterbalance our social challenges and make us look average rather than the true “spiky profiles” we have. I’m just rambling on now though! 🤭
Brain fog is the worst. Especially for those of us who are also ADHD (I think 80% of autistic females are also ADHDers?) as we’ve also had brain fog, then perimenopause renders us practically incomprehensible and feeling broken or crazy 😭
Sending love and solidarity! I am deeply feel so much of this. Thank you for shining this light and being so open. I am still learning to access and understand my sensitivities. Regulation is an ever moving target just for me, add four more sensitive systems and our house is often a powder keg. But one filled with love and all of us learning, ever slowly, how to navigate, respect, and support each others’ needs. ♥️
Oh my goodness, I can only imagine that with being a mother of four, your life admin, care work and heart are double that of mine as a mother of two. You are doing an amazing job! 💕 💕
Oh I just read your profile and saw that you’re a mother of three! Do you want neurodivergent partner living with you all too? Perhaps my maths is just way off! I’ve been awake since 1:45AM NZ time after my return 29 hour journey/flights from visiting my dying Dad in the UK. Grief and jetlag are getting in the way of my cognition, which was struggling enough with peri 😆
Typo! Do you want a neurodivergent partner was supposed to read do you *have* a neurodivergent partner?! I wish I could edit my comments here rather than having to explain my errors 😆
Oh boy, this brought back a memory... Masking through so many carefully arranged appointments with the children - lest I be judged as an unfit and useless mother who was damaging her children. Even the memory makes me exhausted and want to cry. How did I survive? And how can I keep going? I just will - and at least I have far more patience and understanding of myself now. You too. 💜
Debs, yes! 100%. I felt vulnerable writing this down, but I know it’s a normal response to a difficult situation for us. And we go through it over and over again as they ask us the same questions every single time.
Little to no consistency in staffing.
I give them the same answers every time, each time reopening wounds.
Why don’t they have better record keeping whereby they look for the answers to their questions rather than probing us?
I’ve been asked previously by paediatricians to open up clinics for neurodivergent people Wyatt them. Which is an enormous compliment and extremely validating that they see value in my perspective. Yet it isn’t feasible because I must be my children’s carer. I don’t want it to be any other way, yet I want everything to be done differently.
Hence the need for the noise cancellation for the boys. I don’t want them overhearing their “deficits” over and over again. But it’s the way of the broken system.
I tried to improve the education system from the inside, it just resulted in extra trauma for me and more power to The Man.
I'm not a parent, but I wanted to say thank you for writing this. I've never read a post this detailed about what it's like to be an autistic parent/carer, and you illustrated it quite wonderfully. I've always wondered about this. You sound like an excellent mother, and your kids are so incredibly lucky.
Thank you 🤩 💕
Hey there. Just wanted to witness and tell you I see you. I'm autistic, in perimenopause, homeschooling two autistic kiddies, solo parenting, and just started experiencing catatonia deterioration. I'm in California so I got some short term disability thankfully, but I know I'm going to have to go back to work at some point and I don't know how. I can't even vacuum a room right now without being down the rest of the day (and this is on meds). I just barely started being able to read and write again - brain fog is no joke. My heart goes out to you.
Hi Bel, thanks so much for reaching out. I’m so sorry you are going through so much at once. Please reach out in messages if you’d like us to discuss anything further. I know how it feels to be facing many although not all of your challenges. It’s so hard, isn’t it? But I dug so deep from I have no idea where and managed to cope and actually almost thrive in the face of my Dad’s sudden decline. I think it was being bolstered by my extended family who I’ve not seen for a few years. The highs balanced out the lows. Just like being twice exceptional/2e can make us even out of major difficulties against our intellect. I don’t know how it works but somehow it does because we are amazing! I’d be so happy to chat via messages if you would like to, although no pressure if that makes you feel uncomfortable. Please don’t feel alone on this journey 💕
Sorry, I’m too tired to correct the typo as there’s no edit function. I hope Substack add that function soon 🤦🏽♀️
I think what I was trying to say is that our intellect can counterbalance our social challenges and make us look average rather than the true “spiky profiles” we have. I’m just rambling on now though! 🤭
Brain fog is the worst. Especially for those of us who are also ADHD (I think 80% of autistic females are also ADHDers?) as we’ve also had brain fog, then perimenopause renders us practically incomprehensible and feeling broken or crazy 😭
Sending love and solidarity! I am deeply feel so much of this. Thank you for shining this light and being so open. I am still learning to access and understand my sensitivities. Regulation is an ever moving target just for me, add four more sensitive systems and our house is often a powder keg. But one filled with love and all of us learning, ever slowly, how to navigate, respect, and support each others’ needs. ♥️
Oh my goodness, I can only imagine that with being a mother of four, your life admin, care work and heart are double that of mine as a mother of two. You are doing an amazing job! 💕 💕
Oh I just read your profile and saw that you’re a mother of three! Do you want neurodivergent partner living with you all too? Perhaps my maths is just way off! I’ve been awake since 1:45AM NZ time after my return 29 hour journey/flights from visiting my dying Dad in the UK. Grief and jetlag are getting in the way of my cognition, which was struggling enough with peri 😆
Typo! Do you want a neurodivergent partner was supposed to read do you *have* a neurodivergent partner?! I wish I could edit my comments here rather than having to explain my errors 😆
Yes, I was including my partner in the count! 😊 Your counting is just fine! 😆 Sending love as you navigate this season of grief. ♥️
Oh boy, this brought back a memory... Masking through so many carefully arranged appointments with the children - lest I be judged as an unfit and useless mother who was damaging her children. Even the memory makes me exhausted and want to cry. How did I survive? And how can I keep going? I just will - and at least I have far more patience and understanding of myself now. You too. 💜
Debs, yes! 100%. I felt vulnerable writing this down, but I know it’s a normal response to a difficult situation for us. And we go through it over and over again as they ask us the same questions every single time.
Little to no consistency in staffing.
I give them the same answers every time, each time reopening wounds.
Why don’t they have better record keeping whereby they look for the answers to their questions rather than probing us?
I’ve been asked previously by paediatricians to open up clinics for neurodivergent people Wyatt them. Which is an enormous compliment and extremely validating that they see value in my perspective. Yet it isn’t feasible because I must be my children’s carer. I don’t want it to be any other way, yet I want everything to be done differently.
Our powerlessness is so debilitating 😭
Hence the need for the noise cancellation for the boys. I don’t want them overhearing their “deficits” over and over again. But it’s the way of the broken system.
I tried to improve the education system from the inside, it just resulted in extra trauma for me and more power to The Man.
I’m so done with it all!
Courageous woman...you rock!
Thanks for your support, Janey! 🥰 💕