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

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.

100% identify with this.

HRT transformed my life. Plus I also had anti-depressants and CBT during this period. If anything, I feel more comfortable with myself and with my traits than I ever did before. I finally understand the expression that I read so often on Mumsnet: 'zero fucks to give'. Before I understood it only to mean a rage response. Now I understand it to also mean that I don't feel the need to expend any emotion on something. I don't care whether I'm getting 'social' right. I don't care what others will think if I wear my clothes inside out for my own comfort.

I can't help wondering whether having a fairly consistent level of hormones in my body freed me from the flying trapeze of PMS, and that, along with the other interventions, has given me greater equanimity. You know the bottle of Coke analogy? I feel that I no longer get nearly as badly shaken up, and when I do get shaken up it is easier to safely release the pressure in a socially acceptable way.

@GazeboLantern Thank you. Yes! This is it. I've tweaked my HRT in the last couple of weeks and I'm starting to notice the shift of no fucks to give. As you say, in a more shrug of the shoulders than an anger outburst. Thanks for pointing this out. I noticed I've not screamed at myself or melted down since upping the HRT.

I also agree that I understand myself more and am more comfortable in my own skin / don't care what others think. Perhaps for me, it's also finally admitting that I don't enjoy relationships and am happy on my own. No more people pleasing. That works for me. It's less stressful not having to deal with others chaos and mess. That was a huge trigger for me.

Either way, it does seem to prove / point to needing a consistent level of o
hormones. I'm also glad I've been freed from PMT. I used to have painful breasts for 2 weeks each cycle. There wasn't much give before the next cycle came round. Very liberating to be rid of that!

Good to look at the positives 😊 A new phase of life that has had it's challenges, but also has a hell of a lot of benefits.

The timeline is pretty accurate for me except I missed my 40s because I started peri around 38 ish and am now hoping hrt helps a bit with the life limiting levels of anxiety.

There's a good research paper on this called 'when my autism broke'

Menopause made my HSD worse mainly. That will have a knock on effect on the autism and (insert many conditions here)

I was doing as well as I always had until I quit smoking at age 40 and that reduced my dopamine so that my adhd kicked off and I developed clinical depression. I didn't realise it at the time, but I was self medicating with nicotine all those years.

The depressive episodes persisted and got closer together - in spite of antidepressants - until I had a mental breakdown a couple of years ago and had to quit nursing. Menopause definitely exacerbated this. I just couldn't communicate with people anymore and my autism completely engulfed me.

I'm not too bad now, but my resilience is still affected and I just don't want to engage with NTs at all. I've also developed a range of auto immune problems which are really affecting me.

I think this is an area that the health people need to address because, if menopause is hitting NT women hard, it's reducing a lot of us to completely non functional and mentally and physically ill to boot.

There's a good research paper on this called 'when my autism broke'

Thank you. I shall be looking this up.

I think this is an area that the health people need to address because, if menopause is hitting NT women hard, it's reducing a lot of us to completely non functional and mentally and physically ill to boot.

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Aye. That's it in a bloody nutshell. I feel like campaigning in some way.

The National Autistic Society should do some awareness.

Yes, I very much relate to this. I had a surgical menopause at 42 - ovaries out so it was instant - HRT not an option due to my medical history.

My 'traditional' menopause symptoms haven't been too bad despite the extreme surgery. Hot flushes a couple of times a day for the first year or so, now quite rare; weight gain but I have got this under control now.

I never had much libido in the sense of wanting sex with other people because however pleasant the idea might seem, the discomfort of all the clashing limbs and someone else's sweat and mouth and so on was so unpleasant that I had to close my eyes and pretend I was somewhere else. I've always needed my own bed and bedroom to have a hope of sleeping (husband long since accepting of this). So that hasn't changed.

But what's happened is that my ability to 'mask' has really dwindled - I don't mean exactly that my tolerance has gone, more that it stops even occurring to me to do it until I get called out for being either rude or 'over business-like' as my husband describes it. My stimming both verbal and physical has also gone through the roof. I can't even seem to walk or sit properly half the time, and I am in and out of 'mania' every couple of weeks or so.

They are things I have always felt or done but I seemed better able to pretend when my body was full of oestrogen. I say this from the perspective of how I was as a child - pre-menarche - as well as my post-meno self. My 30 or so years of menstruating were when I masked best. I wonder if this has anything to do with ASD typically being seen as more obvious in male presentation; that is, oestrogen confers a better ability to mask.

I'm 46 and currently being assessed for autism. I'm very sure I am peri menopausal too. I've spent my whole life pretending (and often failing) to be someone I am not. And I'm struggling to do that anymore. I'm struggling to do pretty much anything most of the time.

My coping mechanisms that have semi worked up until now are non existent.
We have been fighting for adequate support for our autistic child for many years too, which has also taken a big toll.

I think I need to look into HRT. But I'm waiting to get feedback from my assessment first.

Yes. That's a good starting point actually. I'm going to email them now. It's all well and good Davina banging her drum (and good on her for raising awareness of Menopause) but someone needs to be an Ambassador for Neuro diverse women.

This is a good idea 😃

This is exactly it. Thank you for your input and I'm so sorry that you are going through this. Menopause often hits when we have so many other things to contend with. Not least because we are only just starting to realise we are ASD ourselves while supporting our children.

That is a pretty honest and raw account about how a lot of women must feel. I recognise your user name and coming to this board around the same time as I did (think we all have, as it's a fairly new board that a lot of us fought for)

My goodness, I wish I could give you a hug x

Before Ds was diagnosed. I thought all my difficulties going back to childhood and adolescence were because I was just odd, unstable and an generally an awful person.

Then I happened to look at information about autism in girls and woman. And realised that maybe I wasn't a bad person after all. Decided I probably wouldn't go through the assessment process as my GP had dismissed my MH issues in the past. That was until the last couple of years when my functioning has deteriorated. I mentioned at my assessment that I have no idea how much longer I can manage like this.

An academic at a university local to us has completed a little research into autism and the menopause. I've been to one of her talks. She is autistic herself and is definitely interested in this subject. Her name is Rachel Moseley.

this is the research
journals.sagepub.com/doi/full/10.1177/1362361319901184

So much of so many of the posts resonate with me. I have also found HRT has hugely helped... having young children has not! Along with picking up loads of other health issues (this has snowballed over the last 5 or so years) I cannot cope with much at all now. It is like I have just ground to a halt and my body and mind have just refused to be pushed any more... because that is what I was doing for years, pushing myself harder and harder (and actually achieving a great deal of success and quite a high profile in my field). It really wasn't worth it in retrospect but I didn't realise that I had ASD until relatively recently. Much of the damage has already been done sadly. However, still hopeful that I will get on my feet, perhaps after the menopause... but will live my life very differently (just need to survive at the moment).

I’m 50 next year ,I relate to everything you said ,and I’m on the waiting list with kingwood to be assessed for autism .i know I’ve got it ,my youngest has it and we are peas in a pod

I had blood tests at the doctor a week ago to see if I was in menopause,but they haven’t got back to me yet ,I’m not sure how long I should leave it ,without chasing them up

I relate. Ive also struggled finding an HRT i get on with, as like many autistics, i am progesterone intolerant, but have recently started on livial tibolone and it seems promising

@RainbowZebraWarrior Thank you for posting this. I agree with others, it has really given me food for thought, as a peri/menopausal woman I feel like I am falling off a cliff and it has actually prompted me to seek diagnosis. To answer your points, if that is ok:
Young child: late to walk, shyness, anxiety about everything, odd interests. Not sure about lateness to walk, but yes, shy and anxious and odd interests which I was obsessed/transfixed by.
Adolescent: Very shy, hated talking about things like periods, didn't fit in. Yep yep. Very shy, just hated talking about anything. Certainly didn't fit in. Still don't.
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) I was the opposite of a rebellious teen. My older sibling was a monster teen and I became overly protective of who she was hitting out at (mainly my mum). I couldn't understand it at all. It was also when I was first diagnosed with depression.
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) My early/mid 20s continued from my teens. I thought I was invisible. I was in my first relationship which was abusive, I had no sense of worth. In my late 20s by fluke I got a job which promoted me and taught me masking. I thought it was the making of me, but actually I learnt how to copy other people and how they enacted with others.
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) My career was still going well in my 40s but I ended up quitting jobs due to "issues" which I now recognise as my mask slipping and not knowing how to actually deal with real life issues.
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. Interestingly, I'd put this down to lockdown rather than the menopause. When lockdown happened I stopped masking and breathed a year long sigh of relief that there were no expectations of me and it took this for me to realise that I needed to go for a diagnosis, which I am waiting on now.
Now I am back at work I am finding it so difficult to mask again. But all of your points resonate as being menopausal symptoms on top of potential autism.
Thank you for posting, I feel less alienated now

I also want to thank you for starting this thread. So much of the above is familiar to me. No longer feel like im losing my mind, more like I now know where to find my people

what? what?

progesterone intolerant? what is this fresh hell? ( experience tells me I am really progesterone intolerant.)

I have not bothered with hrt as I had such a bad reaction to mycrogyynon and had two thankfully clear in the end, trips through the two week pathway for female cancers and I dare not risk it, nor could I cope with the worry that the hrt may not be available at all.

I am in my fifties and can no longer mask much.

Progesterone intolerance? Oh bloody hell that sounds awful. Anyone got any good info on it?
(Just googled and first info was saying people who are in menopause. Refuse to read any further. It's bloody women who go into menopause not people arrrghhhh)

I googled progesterone intolerance and autism and found this article which was interesting.

I did a course run by The Scottish Government after I was diagnosed and one of the sessions was on autism and menopause. It seems it is known that we struggle more than NT women.

I'm currently in peri, my physical symptom has been very long bleeds and I am currently on progesterone and tolerate it well but have got a gynae appointment next week to look into long term options for my bleeding.

My mental health has tanked, I'm an anxious mess who barely leaves the house. My cognitive function is also pretty badly effected, although this is on and off, and adding it to already poor executive functioning means I'm barely holding things together.

I'm not suitable for HRT and I am genuinely worried about whether or not I can get through this.

Thank you so much to everyone who has posted on my thread. It really just goes to show how big the struggle is.

We are seeing TV personalities talk about Menopause a lot. And that's great. But the impact on those of us who have ND conditions... well I have to wonder if we are the 1 in 10 who end up giving up work. I still feel that on TV and in the media in general, nobody has 'come out' about how hard it is to be ND and experience menopause.

I wouldn't feel comfortable posting this on Social Media, but this is how I feel;

Autism is difficult, it's tiring to mask.
Osteoarthritis is painful, it's hard to hide.
EDS is hard, impossible at times.
The pain, the disbelief, the loneliness, it adds to the problem. It makes you withdraw more. Because there are no spoons left. No energy. No fight to HELP others understand. Should it be up to us to help others understand? Do they do the research? Do they care?

Nobody truly cares about any medical condition, unless it affects THEM.

This is not meant to be a negative post, it is simply the truth. And it's good to find a place to post about it? Cos let's face it, it wouldn't go down well on Facebook would it?

(Btw, substitute any of those additional conditions with Fibromyalgia, Anxiety, Diabetes, etc. You get the picture)