Thank you for talking about this - I have been a a journey of discovering my autistic authentic self. It’s a pretty lonely place to be, I don’t know how to voice how I am affected but I know that my ability to mask has been wiped out by the menopause.
"The late diagnosed autistic women of today are The Lost Generation of Autism. We are the ones who flew under the radar, fell between the cracks, obscured ourselves from scrutiny by morphing into inauthentic versions of our true selves." THIS! Sam, the writing you are doing is so important. I'm so glad you exist.
Sorry so brief, I’m all of a flap because there was a wrong link in my article which I need to deal with but RSD has kicked in and now I’m unable to function 🤦🏽♀️
But yes!!! We are so deserving of neurodivergent-led research and it’s urgently needed!
Sorry! I’m not in a great mood. I just tried to go for a walk, ended up in a swamp and now I’m wallowing (excuse the pun) on the sofa eating chocolate, drinking coffee, under a huge weighted blanket and having a hot flush that I think is bordering a flare of rosacea 😭
I did shower when I got home, ha ha! And had to deal with the third load of four (and counting) loads of laundry so far today. And and! I ate sardines straight from the tin because protein. My cats wailed at me to share, so I did (on a plate on the floor, and they didn’t eat it. Wasteful little cretins.
One of the implications of the data void is a public policy void because there is no evidence base to validate or even make government and policy makers aware of the issues around perimenopause and neurodivergence. Last year the Australian government released a report on an enquiry into menopause. Of course I read it all but did not see one mention of autism or ADHD or any kind of neurodivergence and scant recognition of associated mental health issues. It made me want to scream - which of course would only have been into the void.
Hi Justine, thank you for your comment! I have to admit I am in a significant cognitive regression, and my attention and articulation are the first things to go... Are you Aussie based? I am glad you guys are at least aware of menopause from a political level, but of course it comes down to women needing to make a "valuable" i.e. financial contribution to society and the economy. So often, it is based on work retention and superficial changes such as making workplaces able to adjust the thermostat to reduce hot flushes, or some nonsense like that! Sorry if that's not the case, my brain is seriously not working properly right now due to ND peri - and just when I was starting to regain skills and capacity, sigh.
I have emailed Professor Jayashri Kulkarni before at Monash. It would be awesome if her clinical and research team could work with us on this. I believe that anyone presenting with extreme hormonal despression through the lifespan (puberty, postpartum, PMDD, pregnancy, peri/meno etc.) should be screened for ND along with the Meno-D score etc. Prof Kulkarni concurred that the gonadal hormones are potent brain steroids and thus our mood is to be influenced by fluctuations, and she was sympathetic to our ND community being hypersensitive to these changes.
I have not had the capacity to follow this up, but if you are keen to, I would gladly support you and contribute. If it's something you want to think about and get back to me about any time, I will be here. Hanging in there, trying to defy the odds of my SI getting the better of me. So frustrating when we know what is needed but don't have the influence, power nor capacity to work on it. So ironic. But we are already making waves! 🌊
I am sharing this on Notes too in case others want to join our cause! 💪
Hi Sam, thanks so much for your response. I absolutely want to dive into this more. Generally my ideas and interests far exceed my capacity to follow anything up but this is so important I need to prioritise it. You’re right, the focus was very much on the workplace and from a productivity perspective. While I’m grateful that at least there is now a public discussion around perimenopause and menopause, the narrative is still very limited and excludes queer and neurodivergent experience. So many women and AFAB people are suffering unnecessarily.
Totally agree, we definitely need to do something about it but it’s so taxing and we need the most support when we are at our very lowest. So hard to advocate whilst spiralling 😭
DM me if you’d like us to to a low demand collab on Substack in the meantime.
Also, if you’d like to, you would be most welcome to participate in the Auti Peri Q&A series! I have a regular feature and am looking for more interviewees.
It’s open to everyone with lived experience of autistic peri/menopause 😊
This article sums it up beautifully! Thank you for taking the time to address this here and differentiating what knowledge is and the impact of the gaps. The universe does not like a vacuum. Things will show up to fill in any spaces. The number of women getting diagnosed as autistic and ADHD of late (and especially in midlife) will hopefully bring more awareness and research to this topic.
Thank you for talking about this - I have been a a journey of discovering my autistic authentic self. It’s a pretty lonely place to be, I don’t know how to voice how I am affected but I know that my ability to mask has been wiped out by the menopause.
I am so sorry, and I completely empathise. I don't have the answers, but you are not alone 💕
"The late diagnosed autistic women of today are The Lost Generation of Autism. We are the ones who flew under the radar, fell between the cracks, obscured ourselves from scrutiny by morphing into inauthentic versions of our true selves." THIS! Sam, the writing you are doing is so important. I'm so glad you exist.
Sorry so brief, I’m all of a flap because there was a wrong link in my article which I need to deal with but RSD has kicked in and now I’m unable to function 🤦🏽♀️
But yes!!! We are so deserving of neurodivergent-led research and it’s urgently needed!
Sending nothing but love and understanding your way, Sam. And continued admiration.
Thanks for the restack, Sarah 💕
There is this thing https://www.whaikaha.govt.nz/about-us/programmes-strategies-and-studies/guidelines/nz-autism-guideline
It is a living document. Would be great to get perimonusal (spelling error) into it eh
Yes! But they (our current NZ government) have shat all over it already 😭
*close bracket after “floor”
FFS. Sam’s in stream of consciousness mode. Sorry, Genevieve!
Sorry! I’m not in a great mood. I just tried to go for a walk, ended up in a swamp and now I’m wallowing (excuse the pun) on the sofa eating chocolate, drinking coffee, under a huge weighted blanket and having a hot flush that I think is bordering a flare of rosacea 😭
I did shower when I got home, ha ha! And had to deal with the third load of four (and counting) loads of laundry so far today. And and! I ate sardines straight from the tin because protein. My cats wailed at me to share, so I did (on a plate on the floor, and they didn’t eat it. Wasteful little cretins.
One of the implications of the data void is a public policy void because there is no evidence base to validate or even make government and policy makers aware of the issues around perimenopause and neurodivergence. Last year the Australian government released a report on an enquiry into menopause. Of course I read it all but did not see one mention of autism or ADHD or any kind of neurodivergence and scant recognition of associated mental health issues. It made me want to scream - which of course would only have been into the void.
Hi Justine, thank you for your comment! I have to admit I am in a significant cognitive regression, and my attention and articulation are the first things to go... Are you Aussie based? I am glad you guys are at least aware of menopause from a political level, but of course it comes down to women needing to make a "valuable" i.e. financial contribution to society and the economy. So often, it is based on work retention and superficial changes such as making workplaces able to adjust the thermostat to reduce hot flushes, or some nonsense like that! Sorry if that's not the case, my brain is seriously not working properly right now due to ND peri - and just when I was starting to regain skills and capacity, sigh.
I have emailed Professor Jayashri Kulkarni before at Monash. It would be awesome if her clinical and research team could work with us on this. I believe that anyone presenting with extreme hormonal despression through the lifespan (puberty, postpartum, PMDD, pregnancy, peri/meno etc.) should be screened for ND along with the Meno-D score etc. Prof Kulkarni concurred that the gonadal hormones are potent brain steroids and thus our mood is to be influenced by fluctuations, and she was sympathetic to our ND community being hypersensitive to these changes.
I have not had the capacity to follow this up, but if you are keen to, I would gladly support you and contribute. If it's something you want to think about and get back to me about any time, I will be here. Hanging in there, trying to defy the odds of my SI getting the better of me. So frustrating when we know what is needed but don't have the influence, power nor capacity to work on it. So ironic. But we are already making waves! 🌊
I am sharing this on Notes too in case others want to join our cause! 💪
Hi Sam, thanks so much for your response. I absolutely want to dive into this more. Generally my ideas and interests far exceed my capacity to follow anything up but this is so important I need to prioritise it. You’re right, the focus was very much on the workplace and from a productivity perspective. While I’m grateful that at least there is now a public discussion around perimenopause and menopause, the narrative is still very limited and excludes queer and neurodivergent experience. So many women and AFAB people are suffering unnecessarily.
Totally agree, we definitely need to do something about it but it’s so taxing and we need the most support when we are at our very lowest. So hard to advocate whilst spiralling 😭
DM me if you’d like us to to a low demand collab on Substack in the meantime.
Also, if you’d like to, you would be most welcome to participate in the Auti Peri Q&A series! I have a regular feature and am looking for more interviewees.
It’s open to everyone with lived experience of autistic peri/menopause 😊
Thank you! I'd love to participate in the Q&A and I'm always up for collaboration with closely aligned folks.
This article sums it up beautifully! Thank you for taking the time to address this here and differentiating what knowledge is and the impact of the gaps. The universe does not like a vacuum. Things will show up to fill in any spaces. The number of women getting diagnosed as autistic and ADHD of late (and especially in midlife) will hopefully bring more awareness and research to this topic.
Thanks, Shelby! I certainly hope so 🤞