Autism and Menopause

[RainbowZebraWarrior]

Not sure if this has been covered as a topic since the board was created. There have been similarities between women with various health conditions, and it has been very enlightening.

I know that our Autism will present differently to each other as women, but I'm going to post a timeline as I'd like to know if this resonates with anyone older.

Young child: late to walk, shyness, anxiety about everything, odd interests.
Adolescent: Very shy, hated talking about things like periods, didn't fit in.
Mid to late teens: Was very sensible for my age. Didn't understand the crazy abandon that other teens felt. When I did get caught up in it, I did so to fit in (probably common in most late teens)
20's and 30's: Masked hard, but managed to hold down a job and was actually very ambitious. (Looking back, I'm amazed that this was the same person I am now)
40's: Now it is becoming difficult. Trying to keep up with the ambition and social life. Don't like it, but do it anyway (people pleaser phase)
50: Perimenopause / Menopause hits. Libido falls off a cliff. Masking is impossible. All Autism traits become magnified, barely any coping mechanisms left. Feel like a shell of former self, feel even more invisible than ever before, want to hide from society, cannot even think about socialising. At the same time, hit with flushes, self doubt, anxiety like never before, Cannot even relate to other Autistic people. Wonder how other autistic people feel, but scared to ask.

The current drive on TV regarding recognising Menopause symptoms is admirable. As is the awareness of Autism. But I do not know a single other person in real life who is Autistic and Menopausal

Just found this thread - such an important topic.
I'm an autistic autism researcher who is part of a research team doing research on autistic menopause, building on two previous studies by Dr Rachel Moseley and Prof Julie Turner Cobb (one of which is referred to in this thread, called 'When My Autism Broke').
You can find out more about our current research study here: www.autisticmenopause.com and on Twitter @AutMenopause

Do check out Dr Rachel Moseley's website too: www.scienceonthespectrum.net
My own very late autism diagnosis came at the age of nearly 59 after a devastating perimenopause which led to my life unravelling. Nearly 4 years on I have started to pull the threads back together again, but things will never be quite as they were, nor do I want them to be.
Before I discovered that I was autistic, I often pushed myself far too hard, trying to keep up with people who didn't face the kind of challenges I did. These days I am getting much better at understanding my needs and practising self-compassion, self-care, and self-advocacy.

Wishing you all a good #WorldMenopauseDay2022
Best wishes
Rose

OP, thank you so much for starting this thread.

Wow. Thanks so much for the info and for your own honest account.

It really helps to know that there are people working on this. In a world where neuro diverse people often feel ignored or forgotten about. The Autism Menopause really is a double whammy.

Thank you.
Autistic menopause certainly can be a double whammy and I’m so pleased it’s finally getting attention.
To say I am passionate about this would be an understatement. A particular concern of mine is the number of people whose lives are being devastated unnecessarily, and in some cases lost to suicide.
It’s worth noting that some autistic people sail through menopause - just as with non-autistic people the experience is hugely variable.
Having more information up front about both autism and perimenopause would have helped me work out what was going on much quicker.
Health care staff need to be primed to consider autism and menopause as possibilities when people are experiencing significant difficulties and distress.
All too often we are left to work it out for ourselves, and then try to persuade them (sometimes unsuccessfully).
Thank you again for your support.

If anyone here is a member of SWAN (Scottish Women's Autistic Network,) they have a webinar on the 27th of October.

I've been to a few of their webinars now and they are really good.

Thank you Gingerkittycat, I'd never heard of SWAN. I've just been on their website.

If you search for SWAN on Facebook and then send a message to the page they will add you to their private Facebook group which is the only online autism space I have seen which is almost completely drama free and without people arguing about autism politics and language.

Thanks for this, Ginger. I've not committed to the webinar yet as I've got a hospital appt that afternoon, but I'm hoping to join in.

Thank you, Rose.

I've read the links you posted and followed the Twitter page. It has been enlightening.

I'd love to be included in any further research you're involved with. Happy for you to PM me as I am also very passionate about the Autistic Menopause Cause.

Just found this thread and watching. I'm 46 (autistic and ADHD), and menopause has recently been confirmed. I'm soon to have a consultation with a menopause specialist to discuss my options. Whatever I end up on will hopefully be OK with my methylphenidate, and I'm also concerned about the breast cancer risks (there's been a lot of it in my family).

But the last few weeks I feel I have returned to my former pre-medicated self at her worst - an anxious, hypervigilant wreck. My mental health has deteriorated rapidly over the past few weeks with no real cause, so I'm assuming it must be part of the menopause. But all I know is that I cannot go back to the old me as my methylphenidate has given me a taste of the "real" me - someone with so much potential despite years of shaming, gaslighting, obstacles, etc.

I have so many questions for this specialist as I have nobody to turn to for the answers. Fingers crossed!

Hope you get some answers. Write as much stuff as you can down about your symptoms. It might also be worth looking at the links Rose provided. I had a good look at the report and quite a bit resonated with me.

My hypervigilance / hypersensitivity came back with a vengeance, too. I don't have AdHD (but it was mentioned in my assessment that I have elements of ADD) so I don't take medication. I hope you find something that works for you and puts your mind at rest regarding breast cancer risks.

🌻 solidarity and strength

@RainbowZebraWarrior thank you so much - the creative submissions phase of our autistic menopause research study is open at the moment (for people in the Canada and UK only). When the survey is launched in the next phase of the research it will be open to people who live anywhere. We'll post updates on our Twitter account: (at)AutMenopause and webpage: www.autisticmenopause.com

Hi Rose. Yes, I noticed that the creative submissions were open. I'd love to be involved in any further research, so please post here if there is anything new. Keep up the good work. You're a real trailblazer and I'm in awe of you.

@Gingerkittykat

Silly question but, do you need to live in Scotland to access the webinar?

The webinar has unfortunately passed now.

It says Swan is primarily for women in Scotland so you could always send a message and ask if they would let you join.

I have an advocate who is also autistic.
She said this to me when I was going mad trying to find ways to 'conquer' my aspergers and peri meno and running at walls expecting to vault them with enough impetus HRT and external support.
(Despite the FACT that I have spent the largest portion of my life doing this and hitting them and landing on arse nine times out of ten)
Here is what she suggested to me and it made me stop mid run at wall and pause and think... and after I digested what this said to me in terms of 'permissions' it honestly changed my life as an Aspergers woman facing menopause.

"Self care is an act of political warfare.'

For me this linked the mask and hard trying and flailing and trying to conquer to the hegemonic EXPECTATION that I PERFORM to expected and socially expedient NORMS no matter what that did to me as an autistic little girl and now as an autistic woman approaching menopause.

Yeah that one suggestion by another autistic woman further along than I am in my awareness pivoted my approach to my own autism AND my menopause. The social hegemony of EXPECTATIONS that I have internalized my entire life as a demarkation of my own success or failure no longer reigns supreme.

Adequate Self care is the one thing that autistic women are denied permission for our entire lives.
What we get cheer led on is conquering and overcoming our neuro divergence in order to seem neuro typical and 'successful'

Imagine saying that to someone who is a wheel chair user.
Get up and walk, your life will be SO MUCH better, c'mon you can do it, you just need to try a bit harder.

Ack.

I feel like I’ve been hit by a bus. I was looking for information about how to teach my autistic daughter about my menopause and I found this thread. My husband has ADHD and he has family with autism so we put the genes down to his side of the family. I’ve always been a bit different but put that down to abusive childhood. Now I’m feeling awful because my daughter says things like she hates her autism and why did I have to marry him because now she has this. Now I’m reading this and thinking its me that is autistic and where do I start? She’s going to hate me now too. I feel so confused. I’m also progesterone intolerant! I have endometriosis so can’t have HRT and I’m 51, in perimenopause and I’m falling apart. Im being really bad tempered and I’m shocked and confused that all this unhappiness is actually because of me and my genes. I can follow the life timeline posted by OP and now Im reeling. I dont know what to do. I’m in shock. Any advice would be so appreciated please.

Second and third opinion on whether you can have hrt.

Trying to accept and even like yourself - if you're autistic, it's part of you and if you can accept yourself it will model something positive for your dd.

Carly jones has a good book for anyone with autistic girls - it's about safeguarding but made me feel very 'seen'.

There is a lovely community of autistic women all puzzling through this stuff and reframing our experiences etc- you're not alone

@nonewnamesleft I don't have children but am mid-50s, pretty much post-menopausal now and also came upon this thread last month. I'd been suspecting for a while that I'm ND, but the linkage made with how autustic women experience menopause really opened my eyes. Seeing what I'd been feeling and living laid out in black and white just took my breath away.

I feel like I’ve just found out I’m adopted and that my parents are not my parents, I don’t have a sense of identity. Who am I, what am I? I think I’ve masked for so long that the fake me feels more familiar than the real me. Now the perimenopause means I’ve turned I to someone else I don’t recognise. There definitely needs to be more help for women like us.

I agree @nonewnamesleft everything I knew I wasn’t sure about and everything I’ve masked and faked seems a more stable existence right now.

Nonewnamesleft I think the support is us. It's us realising and working it through together.
Is there any body in the UK to support?
I went to the national autistic society conference a few years ago. I wonder if there's anything like that for our sex & age group.

I've had a lot of time to ponder this subject since my OP.

I also think the support might have to be us. Or at least come from us as a starting point.

I was speaking with my mother yesterday on the recent 'Menopause media coverage' what is striking is this - all of the women currently centre stage on the issue are Neuro typical (that I'm aware of) they are all in the public eye, all have money, all describe fairly average menopause symptoms and have all been 'fixed' by HRT.

There is no representation of Autism and Menopause that I'm seeing. No narrative of how debilitating Menopause can be on top of Neurodiversity / disability.

They quote figures such as 1 in 10 women leave their jobs during Menopause. If they were to dig further, they might find out who those people were and why.

I am not having a dig at the celebrities highlighting Menopause. However, if you aren't rich, successful and in the public eye already it seems you're just forgotten, invisible and don't matter.

And my god, I've had enough of feeling that I don't matter in life.

I'm trying to organise some thoughts and making a jumbled list of things that might affect women with autism in Menopause. What I really want to do is start a YouTube channel with awareness videos and signposts to help and support. I feel that even by sharing here, we've established how lonely it is to experience Menopause as a Neurodiverse woman.

If anyone has any ideas or questions, thinks it could be a good idea or otherwise, please shout up. Feel free to DM me. I'll also tag the poster from a couple of months ago who linked to some research. I'd be thrilled if they would like to get on board.

Let's do this for ourselves!

@NortherlyRose I meant to tag you in my previous post. I'm really interested in starting a YouTube channel for women with Autism during Menopause. I currently subscribe to a charity (Ehlers-Danlos Syndrome UK) they post weekly videos / live chats on Facebook. They cover certain topics each week (e.g. Bladder symptoms / Fatigue / Sleep) I'd love to do something similar for this subject. More from a point of support and solidarity, but also hopefully to share advice and tips.

Is this something you could contribute to? Even just as a one off from your perspective / experience. Or even just to signpost latest research. DM me if so.

Can anyone access the eds Facebook stuff?