Menopause making autism more intense

I completely understand and feeling similar to you. It's a very confusing and unpredictable time, which is very unpleasant. The HRT I am on has helped somewhat, but hasn't made as noticeable improvement as I'd hoped it would. My GP shows no interest in me being autistic, which is very rude on their part. It's not your fault. It's their fault. No one seems to understand that this period in our lives actually exasperates our symptoms. I have lost my personality currently. I signed up to BRAIN IN HAND yesterday and am hopeful it may help improve my quality of life. I wish the same for you all too. Every day is a struggle. You are not alone. Thanks for listening. 

I was forced into menopause by cancer surgery at the age of 41. It was pointed out to me by an Autism Assessor nearly a decade before earlier that I might want to consider getting assessed, but I put it off.

Alas menopause was simultaneous with me having to stay home because I was extremely clinically vulnerable, and I was at home for almost 2 years and only allowed back into my workplace at 2.5 years (our workplace was high risk), so I find it hard to know which made my autism suddenly seem more obvious to me. Those 2 years at home only seeing my husband were the best my mental health has ever been.

So it's hard for me to know if those 2 years being able to really 'be myself' caused me to become 'more autistic' or if it was menopause, maybe a combination of both. Back in the real world now I certainly don't mask as well as I did before.

LJ

Hi Kit,

Yes - this is my experience. I’ve felt pretty awful for the past three years - and I think it coincided with the menopause. I then had a serious illness last year - so now I’m struggling to separate what symptoms are from what - I think it’s likely a complex mix of being autistic, menopause, other mental health issues and stress and the impact of being so physically ill at the end of last year. I won’t lie - I feel like a complete mess. I’m only just managing to keep going - and that I am is basically because I don’t have much choice really! 

i can’t take antidepressants due to a previous really bad reaction to an anti-depressant - so I’d never dare risk that again. I’m generally not keen on medication if I can avoid it - I prefer to go the natural route if I can.

live been taking A Vogel Menopause support but I don’t think it’s made much difference. I go out for lots of walks in the countryside as I find that being out in nature helps. But I just basically feel awful most of the time. Because of this I’m seriously considering taking HRT. My mum had breast cancer in her thirties so I have been reluctant  to try HRT - but it’s getting to the point where I almost have nothing to lose. 

Like you I find being around a lot of people quite difficult. The isolation of the pandemic has made me even more like this. It’s only my husband and children that keep me going really. 
I have many of the ‘classic’ autistic traits - and I’m part way through the assessment process for a diagnosis. Both my children are autistic - although only my youngest has a diagnosis. He’s a young adult now but was diagnosed aged 10. 
My autistic traits do seem to have intensified over the last 3 years, and I have read things about autistic women struggling more as they reach the menopause.

Have you found anything that helps? 

I'm sending you lots of solidarity and best wishes - because I know how hard this is. I’m sorry you’re struggling too. I don’t have any answers but you’re certainly not alone x 

Hello,

I want to post this message in case anyone looks for topics around menopause in future. This is such a taboo subject which is under-researched and poorly understood, and that makes it all the harder to go through, so I really want to connect people with resources and information if I can.  I am not perimenopausal myself, but am an autistic woman and likely will be experiencing the menopausal joy in a few years time! 

I am a scientist, and over the past few years, myself and my colleagues have been doing some research on autistic experiences of menopause. If they are of interest to anyone, you can find the two studies on my site: Menopause and autism | Scienceonthespectrum  (the link is to the first study, where you can download the paper, read the plain English summary and watch the explanatory video if you so wanted. At the bottom of the page, you'll find a link to the second study). 

From this research, I have heard from a number of people that they found life more difficult during the menopause, including experiencing heightened sensory sensitivities and 'seeming more autistic'. I hope that reading these studies may help people feel slightly less alone and slightly more informed about why it's so hard - I think menopause is made so much more difficult by the fact that many people struggle alone and not being sure about what is happening to them. 

For the same reason, I want to link you to some supportive communities: if you go to the resources page on my site (Resources and support | Science On The Spectrum), you can scroll down to 'neurodivergent menopause'. If you join any of these groups, you absolutely do not need to be socially-active; there is no pressure to post or join in any discussions, but you may just find some comfort in hearing from others who are sharing support and consolation around all the difficult facets of the menopause, and sharing relevant news/articles/online content and advice.    

Finally, I wanted to let you know, in case you are interested, that me and my colleagues are running a new study exploring autistic experiences of menopause. We are a team of researchers (autistic and non-autistic), and autistic community advocates  If you might be interested in learning more about it, you can find all the information about our study at: AutisticMenopause.com  Hopefully for anyone who comes across this in future, you will be able to find more information there about our findings

  

I am passionate about helping people find information and support related to this time... there is no autism-specific menopause support at present, but at the very least, it is so important that people find supportive communities they can talk to, and find information which helps them make sense of what they are experiencing. I hope this post will help anyone who reads this, in that way :) 

hi

im 53 just been diagnosed with autism. I have struggled all my life especially around period time with terrible PMS , I ve also just had total hysterectomy too so my anxiety and menopause symptoms  are through the roof . My gp has put me on HRT but taking time and the panic and exhaustion is beyond belief. Im on a masive journey to lean about all of this and have read today about autistic fatigue. I have been told all my life its anxiety an also last year told I had fibromyalgia. Since getting my autism diagnosis< I am researching so much and together with hormone issues its opening up a whole new level of understanding. Im hoping to speak to my gp and see what else I can do but in the meantime have got to try and have a calm life, Ive had to stop work because I was having meltdowns too often. All is becoming clearer but how many women  are suffering out there being mis diagnosed with depression etc. Its a huge subject

Hi. I’m maxed out on oestrogen gel and progesterone. Have been on citalopram (SSRI) most of the last 5 years although I’m starting to think the Citalapram side effects are something I need to think seriously about now. I’m sure it reduces my ability to (what I call) join-the-dots in life and makes my short term memory worse. However, I tried a break from Citalapram a couple of years ago and fell into an awful burnout episode so I do need something to help me with anxiety and depression.

In summary, I’m on the best meds for HRT relief but they are not a panacea.

Heavy sigh...

Hi, thanks for posting about this menopause and ASD symptoms.I am going through all of the above.One of the worst problems is that if I am not doing something positive, ie reading or distracting myself I feel deeply depressed too. I recently had an emotional stressor and I find that my ability to cope with anything now is massively reduced.I cry over the smallest thing and every sound that never bothered me before is now positively distressing. Has any one had any success with HRT and anti depressants?

Wow. I can totally relate to the masking thing. I think that’s one of the main reasons I decided to get diagnosed: the psychological pressure to mask during meno-mania became unbearable - I just couldn’t do it anymore; I found I was burning out more often. 

I think it can be a lot worse when you are autistic. I am suffering the lead up to meno and the symptoms are awful. It was doing internet searches that I found out it can be really bad for some women. I'm talking panic attacks (like terror), awful intrusive thoughts and a lot more. But I think being autistic adds on sensory issues (sound become unbearable) and awareness of the horrible internal sensations that can come with it. I found some blogs (not autism-specific) where people listed almost 70 symptoms and the NHS only lists a tiny amount. GPs are not aware enough about this. I also saw this on Twitter about neurodiverse women and menopause: twitter.com/.../1186215391443345409

Thanks for answering. Reading stuff people have written online the thing about it being harder to 'mask' and more exhausting seems to be a common symptom mentioned in relation to going through the menopause.

I've also had the feeling of 'not knowing who I am anymore' particularly badly over this last year which I have heard of before relating to mid-life crisis in general.

'Me too' is getting to be an unfortunate cliche but it's still true

Hi

I'm in a state of confusion with hormones, menopasue, ASD - I just don't know who I am anymore and what my true personality is.

(I am pre, formal ASD diagnosis - should be assessed by Summer next year).

I am 48. Had children by assisted conception aged 39 (I didn't ever get a reason why I could not conceive naturally but now suspect it was because my hormones plummeted in my mid 30s when I started trying). I had a very stressful pregnancy as my organisation made me fight for maternity pay which I was entitled to - this happened before I had seriously considered myself as being ASD but looking back I can link my reaction to high anxiety levels because of suspected ASD.

Basically, I don't feel like I have ever been normal since getting pregnant. I kept telling people my brain wasn't the same and everyone brushed it off as me having baby brain. Well if that's right I went from pregnancy-brain to baby-brain into peri-menopause and have never come out of it and all of those states were cocooned in me probably being ASD.

Because it's only in recent years I have seriously suspected I am ASD, it's hard for me to separate out what behaviour/symptoms are hormone related, what's age related and what's ASD related - I have no sense of normality to compare myself to.

What I have picked up on at my age now is:

• I seem to have lost chunks of my history e.g. I used to design databases when I was younger, now I look back on my work and wonder how I ever did it - like it was a different person
• I have reduced ability to mask
• increased likelihood of burn-outs after shorter periods of time
• deteriorating short term memory
• decreased executive functioning (I picked this up from a thread by Invisiblewoman about her 'inner secretary' having gone on strike)
• increasing need to withdraw
• seriously high anxiety levels
• reduced ability to multi task - I get overwhelmed by multiple priorities
• I now understand the true meaning of mood swings
• I suspect I have PDA and that it's got worse in recent years

There are probably more issues too.

I really understand when you talk about the rage. Currently I would say that my rage is bound up in my latest burn out (I'm on sick leave for 'stress' although to my mind it's been another Aspie burn-out) but I never used to have rage like this. Rage because of my intolerance to something because I just have nothing left to mask my intolerance.

Occasionally I joke to people about giving myself a DIY lobotomy at home with a screw driver - actually I'm testing to see whether people take what I say as a joke or a cry for help - sometimes I'm just so desperate to unplug and feel nothing. [To the moderators - I have no intention of actually doing that!! But if you feel the need to remove that part of my post, I understand]

All in all I think menopause messes with your mind whoever you are and whatever conditions your are living with. I don't know if it's age or hormones which make my situation worse but I know at my age I definitely feel worse, as in, I feel very much more Aspie. 

Hi yes, this is the kind of thing I mean and had read about on some blog's.  I was severely oversensitive to sound as a child. I was given furry ear muffs as a young child, tried ear plugs, tried walkman's. Was much relieved when I experienced some hearing loss due to a medical issue but of course they gave me hearing aids, which I found actually blocked quite a lot of environmental sound if I had them in but turned off (or I'd put dud batteries in incase someone looked behind my ears to see if they were in the 'on' position!).

I had a phobia of speaking in public due to developmental delay causing me problems actually getting speech sounds out and this causing a stammer and getting extensively bullied so I went to a college for the deaf and learnt to sign. I was fascinated to find for others who'd never spoken due to been born profoundly deaf, it was acceptable for them to 'write notes' in shops and sign indicating they were deaf. The nearest town was better than most regarding deaf awareness having a famous deaf school nearby.  Even many bus drivers could sign.  I didn't speak again in public for years. 

I hid being people assuming deaf because I was wearing 2 hearings and ids didn't speak to get through university via interpreters so I never had to 'speak in class' but the intensive masking led to some kind of a breakdown in my last year and I barely managed to finish, by the skin of my teeth came out with a 2:1 but ended up in a specialist unit and a formal diagnosis of autism.

By the time I got out and into my own flat the internet was becoming more affordable (though still 'dial up' using an ethernet cable). I was more relaxed in my own flat so often left hearings out more and felt confused I could hear sounds but still really struggled understanding speech regardless of whether I had the hearing aids in and on. It was several more years before I discovered conditions such as Auditory Neuropathy and Auditory Processing Disorder existed, the fact that I had actually had hearing loss when I was originally tested and had autism confused the issue greatly too I suspect. As even as an hearing autistic person I wouldn't react reliably to auditory testing.

It was also some time in my 40's before I realised my degree of symptoms also corresponded to my thyroid levels and not taking thyroid meds meant my airways tend to become more inflamed my responses slower and so I appeared more deaf when levels had dropped than when they were high (which had the opposite affect and made me more hypervigilant and paranoid). It's been difficult to find the right level but I finally think I'v cracked it and then the menopause starts and everything intensifies again!

I've no patience and the tiniest thing 'going wrong' is 'uncope-able' and sends me into a rage or panic meltdown so I'm finding it exhausting just getting through a day most days. I thought I may have chronic fatigue too but it seems like this is just a result of having autism and struggling with the changes in the body perhaps?

I gotcha anyway and it was my fault for going off topic! 

Thanks For this... We both were at fault there... some OPs (Opening Posters) are more tolerant than others, Y'see... (!)

We could begin a new long Thread about Misunderstanding from "official experts", but there are so many already that I would not know where to begin apart from starting a new  "angry rant"!    ...I wait to see invitation from the OP again Myself, since I already posted a sort of apology/compromise. BUT with regards to Autism/Menopause/Medicines/Ageing... these are all linked (not interchangeable though) yet hard to follow and separate... Especially if one has the same "chlidlike" allergies or behaviours regardless of Age or Menopause... (This was My "Brainwave Frequency" Theory.)

I gotcha anyway and it was my fault for going off topic! 

...Greetings, Me again, let Me see if I can get this in a correct order...

Kit McDaydream said:

I was wanting more accounts of whether it made autistic obsessions etc more intense not what GP prescribed you if you could cope with going.

...Okay, I gotcha. I still stand by what I said first, about Autism having almost nothing to do with being  Menopausal/Male/Female... I actually began an older Thread once, to do with Autism being little more than a different *Frequency Of Conscious Thinking*, but that may not be of interest to this Thread's Topic...

I actually look forward to reaching the other side and not having to bother with silly unpredictable hormone stuff. Back to being a tomboy as I was when I was 12! 

...Given what is written here about it so far, Menopause sounds very awful. (!) But I agree with the "other side" part... Menstruation crippled Me, then I learnt how to deal with it (sort of) and then I look forward to getting rid of it.

...Maybe I am different, I have always been Autistic and sensitive to allsorts of whatnots, but I had to learn to avoid or to cope. & I have never "masked" I should say, I cannot do so due to genuine Allergies. & NO all of this was NOT at all Easy to do - But I maintain it anyway.

...I posted, as said, as "pre-menopausal" opinions were invited... perhaps I should wait until I am 'fully Menopausal' to post again...? But, no, everything is just as bad as it was when I was Young as it is for Me now... Yet when Younger, I had more abillity (Innate Chemicals and Fitness) in order to better cope or ignore such damage. I hope what I mean is understood. (& Yes, I was a "Tomboy" when Young, also. (& still am.) )

Hi Kit,

I am a recently diagnosed female aged 50. I have found the last few years my reactions to sounds, smells and visual distractions much more increased and I have found I am less able to mask my frustrations than ever before. As I type I am sat in my office at work, tears running down my face from the hammer-typing colleague in the next room. Someone walked up the corridor just now snapping their fingers and I was damn near homicidal! I also find myself catastrophising far more than ever. Another colleague just used his inhaler and all I could feel was anger and contempt at the noises. I don't want to feel this angry but it is overwhelming moment by moment. If you have asked this because you are also finding your reactions enhanced/more intense, then yes I concur. OMG he just blew his nose so loud arrghhhhhh why is no-one else bothered by this in here - literally feel like an alien on the wrong planet :(

From what i've read, burnout problems and loss of masking ability seems to get a lot worse as we approach our 50's for both men and women.  I'm definitely experiencing that.  However, apart from my bullet points in my original comment, I'm sitting on the fence regarding whether i think this is a specifically female issue or just due to middle age.  I tend to think it's the latter as many men our age seem to report similar worsening of their autistic traits and experiences. 

when I read this blog a lot of it made sense (several references to middle aged problems) https://boren.blog/2017/01/26/autistic-burnout-the-cost-of-coping-and-passing/

I was wanting more accounts of whether it made autistic obsessions etc more intense not what GP prescribed you if you could cope with going.

eg more like if you had extreme sound phobia's as a child but learnt to manage them as an adult then they seemed to intensify when you went through menopause, so you struggled just as much with unpredictable sounds as you had as a child etc

Yes, it started as 'menopausal aspies have problems going to the doctor' and turned into something else mid post.