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

Omg OP this thread made me so emotional I could have written it and identify so much thank you for doing it !!! This is me so much and so very similar to what you posted! I'm 45 diagnosed Autistic age 42 and ADHD.
I'm struggling so much going through peri at the moment. I also have fibromyalgia, endometriosis and osteoarthritis and get lots of pain. Things seem to have really worsened for me especially socially too the last few years
My youngest son is also autistic he's 12 and currently going through puberty so it's really difficult for us both at moment 💜

Hi Blackeyed. If you go to the main Ehlers-Danlos Support UK site you can sign up as a member. It's free unless you want to subscribe to the twice yearly magazine. You can then go to their facebook page and join (they will ask for your email address so they know you've signed up) It's well worth it as there is a wealth of knowledge and advice. They also have a freephone advice helpline. I've used this a few times and they have been great in helping when DDs school were totally dismissive. They also don't require a diagnosis (they cover both EDS and Joint Hypermobilty Syndrome issues)

I have HSD (EDS?)

The fucking question mark pusses off my autistic side!

Thanks for the info.

I know what you mean. Yes, HSD and Hypermobile EDS are now considered the same. The constant changing terminology is a Pain in the arse isn't it?

And the hips, and knees, and elbows...

I keep coming back and re reading this thread as I’m really feeling lost.

I’ve always struggled, with what I thought was my mental health and diagnosed with anxiety and depression.

things came to a head last year. I started HRT and referred to a psychiatrist, he wants me assessed for ASD, DD2 is diagnosed.

from what I’m reading, it looks like menopause may have removed the ASD mask that I didn’t know I was wearing.

and now I don’t know what to do because I’m still unable to go to work or leave the house if I’m honest. The saying “like a former shell of myself” sits well with me and the idea of never seeing another human being ever again would also sit well.

Rosie, you are not alone. I feel like you every day and am actively looking to go “off grid” if I can.

It is tough...💐

I posted on this thread back in May. Since then I've received an autsim diagnosis and also started HRT.

The HRT has thankfully eased some of the physical symptoms of the peri menopause, but not helped anything else.

Mentally I'm probably at the lowest I've been for a very long time and trying to mask as much as I can, but it's becoming increasingly difficult. It would be great if HRT patches could sort my head out, but they were never going to. As those difficulties are very much caused by going 46 years with undiagnosed autism, alongside other really significant mental ill health. Peri menopause is just icing on the crappy cake.

I’m the same age as you

i feel like I’ve led a life of lies. Although, I never assumed ASD for me.

I hope things pan out and I can start to be myself, what ever that is.

with DD’s diagnosis I haven’t found much support and we are both adults now, I need to find a way to find the new me some how.

My Life has been a massive fucking obstacle, I know now that I am autistic, but trying to fit in and comply has exhausted me. I have been on every anti depressant known which I now know is a thing for undiagnosed autism especially in women at 55 I just think fuck off life I've had enough

@Ghostbusters104 I’m with you. I’m exhausted by my life. The endless trying/failing/trying and failing.

I. Am. Tired.

@DollyDaydream55 Yep , tired of climbing a wall full of sticky treacle. maybe we will find a way out, meanwhile sending hugs 💐

@RosieMolloy I hardly leave the house, I am just burnt out masking and trying to fit in . I read an article this weekend by fern Brady,a comedian who has struggled with autism. She, I think though, was more like male autism ,in that she was physical in her meltdowns , it gets you noticed and as such maybe diagnosed earlier. I go in on myself which means I get ignored, I ' don't cause a fuss' at least not externally honestly I'm surprised I'm not dead by now with the amount of anxiety and fallout from that ,

Rosie, I’m very much an internaliser. The first and only time I let my mask drop and asked for help, my husband left me.

I almost wish I’d just carried on and not asked to be “seen”.

@DollyDaydream55 💐💐💐

www.bbc.co.uk/programmes/p0f2cxgn

This is on BBC 2 on Tuesday. Looks like it could be quite interesting.

I'm sorry that happened to you. That's shit. I'm too black and white sometimes but I think he can't have been a decent person if he left the one and only time you asked for help. I also think you could have made yourself really ill if youd continued to pretend for his sake. That's how I feel anyway. I say that as someone who walked away from my own (crap on and off) relationship. I did this because I knew he was never going to understand me. He just wanted me to be 'unproblematic' even though he was deeply flawed and hugely selfish himself. His favourite phrase was "oh come off it" if I ever mentioned anything he didn't agree with or anything I was struggling with. Or anything he didn't 'beleive' so I figured I ld be better off out of it. And I was / am. Weirdly, he suffered with depression and anxiety and would act like a tortured and sensitive child most of the time. Had no regard or awareness to anyone else's feelings the rest of the time. All in all, a waste of space really. I'm so glad I don't have to battle with that now. Pretending you're ok for someone else's benefit it fucking exhausting when you get nothing back.

My mother has just pointed this out to me in the TV guide. Looking forward to watching. Chris Packham was diagnosed in his 40s.

Think I'm perimenopausal and my autism is amplified.

I read a journal article recently about how hormonal changes in menopause impact the gut microbiome in women. As there have been studies linking the gut microbiome with autistic behaviors, it made me wonder if this one factor influencing the increase in autism symptoms in menopausal women (this is anecdotal, but have read about it in lots of online forums so I really believe it's a thing).

@Gruffling interesting, I think mine did , it coincided with difficult times , and I thought I was going completely crazy, not for the first time

I’m signing this petition about menopause. Maybe if there is a notes section, you can mention Autism if you wish to sign it. I personally would like this sorted and things put in place before my daughter goes through it.

www.change.org/p/make-menopause-matter-in-healthcare-the-workplace-and-education-makemenopausematter?fbclid=IwAR3Nn0t1oiTt6rfx_cfeZubZn25VBLBB2tk-hkFTndnBhwSIaJuu03Bo_b0

I just want to say that I can identify with the things you have said here. I am 55 not yet diagnosed but I'm pretty sure I am on the spectrum. My daughter is and was diagnosed at eleven. Me, I always felt 'different' and when I was young I thought it had something to do with my surname (that sounds so crazy now). This is how I was when I was young. I Would only drink out of the same beaker and eat with the same set of cutlery and melt down if I was presented with a different one. Would only wear the same clothes, believed that toys and inanimate objects had feelings (and I still do) was obsessed and fascinated with water towers, gasometers and soil pipes. I. was always constipated as I used to be frightened to poo and couldn't 'go' anywhere other than home. I had a toilet phobia too. I Could not and still can't cope with light touches. When my parents held my hand it had to be really really tight. How that has got worse since menopause is even if someone waves or points a finger anywhere near me I can feel it and it makes me want to cry. When I was young I couldn't stand it if people didn't pronounce the T at the end of a word and I remember giving my poor mum in particular a very hard time over this. Hearing a word supposed to have a T at the end pronounced without the T used to physically hurt me. I can't explain it really. I can't stand groups of people talking and I struggle immensely with that at work. I can never tell where voices are coming from. I also think I have rejection sensitive dysphoria and always have had. I also had an eating disorder when I was young. I didn't want to grow up and tried to hide my developing boobs by wearing pin badges on my clothes to cover them up. Like you I hated hearing about periods and when I started mine at 15 I couldn't cope AT ALL. I sat in a chair for a week, which thankfully was half term. I still remember the date I started and where I was and what I was wearing - that's also a thing with me. I have to work very hard at NOT including details like that in conversations as I've realised (very late in life) that people don't want to know where I was standing and what I was wearing and what I'd had for breakfast when so and so told me such and such. I've managed to hold down permanent full time jobs but never found it easy and had to pull sickies due to anxiety and burnout - one job I was actually signed off because of it. I work PT from home now and I struggle even with this, also because my daughter needs a lot of support. I masked when I was young, going out to pubs and nightclubs in order to fit in but secretly hating it. I used to go to parties and hide in the bathroom for a lot of the time. Now, I cannot bear intimacy, need my own space, would quite happily spend days and days alone not speaking to anyone but I can't do that.My husband likes to go out and is very sociable and I am the opposite. I an no longer pretend. I could go on and on about my foibles which I didn't realise there was a name for until my daughters diagnosis and learning about autism. In fact, I had no idea she was autistic - just that she had so many difficulties. I was completely shocked when she received her diagnosis and felt I'd let her down by not knowing. Anyway, I hope that helps to hear someone else telling a similar story to your own. I've never opened up so much as I have just now on here to be honest.

Also, I get a lot of criticism from my husband for supporting my daughter as much as I do. I find this very very hard to cope with and have quite low self esteem because of it. I do my best, I do the same for my daughter as my mum did for me and despite my own difficulties have managed to get married, buy a house and raise a child.

Thanks for posting your honest account. I can completely relate. Myself and DD also went through the constipation / withholding thing. Both around the same sort of age. Many other similarities. You aren't alone.

DD is 11 now, like yours. I'm sorry you get criticism from your partner. I don't have a partner as I am simply not capable of living with one any more. My Mum frequently tells me I'm 'too soft' with DD. I don't care. Yes, I'll support her to the end. She's all I've got, and I'm all she has really. I see it that NT people don't understand. We do - in the sense that we are a team, cut from the same cloth and sometimes we like the fact that we have our 'own little world' (Even though it can be spectacularly difficult at times) I think I've found solace in this. It keeps me going.

Blair her, she started her periods just as I became menopausal. Again though, I think it's helped us bond further.

@skywatch25 I think it’s clear as day that you are most likely autistic and if you took that post to your GP and asked for a referral for an assessment and that you need it because you feel you might be able to ask for some accommodations at work and you might be able to get some support from your husband too. As far as your husband is concerned, you are a neurotypical person acting out of sorts all the time. He will be confused. He shouldn’t criticise but hopefully he can be educated. If you receive a diagnosis, he might change his approach. It’s like expecting someone with no legs to be able to walk just because you can’t see under the table that they have no legs. Once you know they have a disability, your expectations of that persons abilities will change. Invisible disabilities are such a challenge, that’s why they brought out those sunflower lanyards. You can’t act or appear neurotypical for long, it’s not healthy and why should you have to, just to make everyone else feel comfortable? It’s less harmful for them to become a little educated than it is for you to risk your mental health by masking. A wheelchair user might be able to stand occasionally but it’s exhausting and they will need to sit down to recover. Masking is exhausting and you need to recover. You deserve a diagnosis. It’s too much to expect people to act all the time and pretend to be something they are not. If you do the right thing for yourself, your daughter will see that and learn from you. Best of luck!