Autism and Menopause: More Questions Than Answers

When I first realized that I was starting to experience the symptoms of menopause, I went in search of more information. The first thing I learned is that I’m not experiencing symptoms of menopause but of perimenopause, the period (heh) before menopause when a woman’s body starts producing less estrogen.

Menopause is the hormonal finish line; perimenopause is the roller coaster ride that gets you there.

There’s plenty of information out there for women experiencing all stages of “the change” but, of course, nearly nothing specifically for autistic women. I don’t know if autistic women experience menopause differently. It sounds like a difficult time for most women, with a lot of variation in symptom type and severity, so it’s hard to say if what I’m experiencing is different from the norm.

What caught my attention, though, is the overlap between some common traits of ASD and symptoms of perimenopause. Many autistic women–myself included–already struggle with sleep problems, temperature regulation, forgetfulness, mood swings (irritability, depression, anxiety), and fatigue.

My biggest question is will this make menopause less difficult because I have coping strategies in place that I can ramp up or will it make it more difficult by compounding my existing difficulties? A couple of years into this grand hormonal adventure, I feel like it might be a combination of the two.Β 

Some thoughts on what I’ve experienced so far:

Sleep: My sleep patterns, which were never exactly normal, have become worse over the past few years. In fact, they’ve gotten so bad that I went looking for solutions. Thanks to Aspiewriter‘s advice, I started taking melatonin, which has helped a lot. Also, the fact that I’ve never been a good sleeper means that, unlike many women who suddenly develop insomnia later in life, I don’t have a lot of anxiety about being wide awake at 3 AM.

Temperature regulation: I’ve only had a few mild hot flashes. Unlike the descriptions of hot flashes I’ve read about, mine are quick to pass, but they’re accompanied by a very uncomfortable tingling sensation in my chest and head. This seems to be an unusual symptom and may be related to my atypical sensory processing system.

In contrast to the mild hot flashes, I was having intense night sweats, which compounded the sleep problems. I love my heavy comforter. My hormones do not. So night after night I’d wake up, wrapped up in the comforter and drenched in sweat. Taking a daily vitamin E supplement has decreased the frequency and intensity of night sweats substantially. I still have them occasionally, usually following a stressful day, but so far I seem to be lucky in this area.

Mood swings: The only detailed information I’ve been able to find about autism and menopause is Asparagus Girl’s post on coping with mood swings. I can confirm her observations about looping between misery and mania. It really does feel like a hormonal roller coaster. As The Scientist put it, “when you’re up, you’re flying and when you’re down I can’t even come near you.” Implied in the last part was without getting my head chewed off.

It’s become hard to sort out what’s hormonal and what’s the result of my usual autistic tendencies. Sensory overload and a poor understanding of my emotions have always made me prone to mood swings, but recently drastic changes in mood seem to come on without warning and in ways that feel irrational and unprovoked.

Some days I feel like a chemistry experiment gone horribly wrong.

Getting lots of exercise helps (it’s supposed to reduce hot flashes too). So does eating well, especially avoiding too much caffeine or sugar. Surprisingly, simply recognizing that I’m in the midst of a hormone-induced mood also helps. Rationally telling myself that it’s okay to feel so out of sorts and that it will pass reduces my frustration.

Other general tips for dealing with mood swings that I’ve seen (but not tried) include relaxation exercises (yoga, breathing, meditation), low-dose antidepressants, giving up smoking (I don’t), connecting more with friends/family and vitamin or herbal supplements.

Fatigue and forgetfulness . . . just make me feel old. I have less endurance for pushing myself than I did five years ago. Perhaps that was a factor in finally realizing that I’m autistic; it’s harder to fake being “normal” than it used to be.

On the positive side, menopause is forcing me to be kinder to myself. I take more breaks during the day and pay closer attention to how I’m feeling. I also look for ways to do things more efficiently so I can continue to do what I need to do without wearing myself out. And I try not to take the small stuff too seriously. Yes, menopause is exacerbating things I already struggle with but not so much that it feels worse than what other women describe.

And it only lasts a few years. Or twelve.

I hope not twelve.

——————–

I would love to hear from other women on the spectrum who have experience with perimenopause/menopause. Suggestions? Tips? Anything you experienced that seemed unusual?

74 thoughts on “Autism and Menopause: More Questions Than Answers”

  1. I am not ASD but can only add share your tips, as there are may of us going through this hell! Often I think that people on the ASD are more sensitive to these ups and downs and so can help others who are less sensitive.

  2. Yet again, thank you for voicing so eloquently what I am experiencing. Although I have still not been diagnosed with aspergers, I suspect I have it, and it is only through the experience of peri menopause and the increased intensity of my symptoms – mood swings, intolerance of noise, increased impatience and frustration with many aspects of everyday life – that I have realised that I am not quite “normal” and that my reactions to things which other people find mildly irritating are immense. Add to that the fact that up until 4 years ago I suffered from M.E. for at least 10 years, and it really has been a long, tiring, rocky road. A long way to go……

    Your postings keep me going, thank you!

    1. I think perimenopause was a big factor for me too in finally recognizing that I experience life differently and to start looking for an answer. It became much more difficult to cope with things by force of will once all these symptoms started kicking in. At least there is an eventual end and we can hope that when the roller coaster ride is over, things will be better. Or at least more predictable.

      1. That’s my experience too. I’ve always known I was different, but menopause has made me realise how much. I’m only working 2 days a week now, and being much Kinder to myself.

    2. Had to respond as I thought I was alone with the Aspie/ME/Menopause trio. I have all three and my life has become very difficult recently. I have had to go on HRT to just function. I would love to correspond in more detail if you are willing.

      1. Hi Sarah . I had ME , am an aspie and seem to be starting perimenopause. Using the ‘Lightning Process’ (by Phil Parker) eliminated my ME and gave me coping skills to halt in in its tracks it when it tried to sneak back through anxiety-provoking/ adrenaline raising/ immune-system-crashing thinking patterns. It was pretty expensive (but so worth it for me!). But a good cognitive behaviour therapy or neurolinguistic programming session by someone that understands autistic cognitive styles might help you just as well.
        Good luck!
        x

  3. I can ‘chime in’ on this one. I’ve reached the finish line and am very happy to have done so. Eating a lot of cruciferous vegetables – daily – helped me quiet the symptoms. Also fish oil, and forget about bread and sugary treats. I too had not much trouble with hot flashes but the tingling was intense and anxiety-inducing. Those still happen occasionally, I believe induced by stress, and I calm myself by pacing. I pace a lot anyway, it is what I do. Exercise is imperative, I have a bike on a stand which enables me to spin for an hour or more a day while listening to music. A good time to stop thinking and just sweat. I would run, but it is too hot where I live.
    As a result my body mass is low, and in my opinion that helps a lot.
    For me, the mood swings were familiar as they seemed to mimic the rest of my life. Energy levels zoom, energy levels plummet. It is good I have been able to stay home through this phase of my life. The word plommet is where plummet comes from and I often felt like a small heavy piece of lead. But it passed.
    My opinion on menopause and perimenopause is that we on the spectrum, by the time we “get here” have been managing ourselves for better or worse for a long time. As as result, we may be able to resist the panicky reactions that some women unfortunately experience. Not all of them, certainly, but I believe our ability to pay attention and figure stuff out really helps.
    Okay I’m going on too long.
    Hope all who are going through do so healthfully and sane as possible.

    1. Thank you for the reassurances and the good wishes and the detailed input! That’s interesting about cruciferous vegetables. I try to eat lots of veggies in general and limit my sugar intake, though the sugar cravings can get intense.

      I’m relieved to hear that you had the tingling too. It’s so uncomfortable and I wasn’t able to find anything about it in my searches online. The link between stress and hot flashes is definitely a strong one. Nearly every night sweat I’ve had in the past couple of months has followed a stressful day. I’m also finding that if I feel a hot flash coming on, I can sometimes preempt it by intentionally relaxing.

      That’s a good point about our self-management skills. I’ve been very aggressive in looking for ways of managing new symptoms as they arise and I don’t get too stressed about it. It’s more like “one more thing” to deal with in a long list of things.

      1. Regarding the sugar cravings…drinking decaf chai tea and taking Chromium supplements have taken my strangely intense sugar cravings from 1000% down to about 20%.

        The Chromium is an insulin regulator. Not sure what it does for me but when I remember to take it, I can go 8 hours before I realize I’ve had no demands from my body to stop everything and eat sweet. Obviously, read up and make sure it’s a supplement that’s safe for you.

        Chai tea includes a couple of insulin effectives like cinnamon and cardamom. I’m not a Chinese medicine expert so there may be many good things the Chai spice mix is good for but my experience is; a couple of cups a day and I can skip the sugar binge. On a comfort note; since menopause showed up, no other teas in my vast collection give me a full body sensory reaction like the Chai. It just seems soooo right these days.

        Best wishes.

    2. yes, my dear mother had panic attacks at menopause and never quite recovered. i breeze through these before they even get a hold. your right ! We are equipped to cope.

  4. I think this is a really useful post for any woman. I haven’t got an autism diagnosis but often question it myself, and have 2 children on the spectrum, and can really relate to a lot of what you say. I will try harder to eat better and get more exercise – either way it’s not going to do me any harm is it.

  5. Hello: I have to re-post your original question as stated above so that I may try to stay on track and possibly be of any positive, helpful assistance. (I tend to veer quite (understatement) a lot!) So, with respect and gratitude for your website the question, your question to be more precise: “My biggest question is will this make menopause less difficult because I have coping strategies in place that I can ramp up or will it make it more difficult by compounding my existing difficulties?” I would say that from the things I have read since I first stumbled across your site (Thank You and God and all other contributors) You seem to have worked very hard and accomplished many positive steps to help yourself handle the, at times (almost always for me) difficulties; hurdles; heck the whole enchilada??? of being diagnosed as I believe the term preferred is Aspie. This I believe will help you significantly. You have a very strong willpower and you take action (I do not, for the most part – your site is very helpful in possibly changing that…see the veering…as i annoy myself and grit my teeth! ). Looking back up to your question. I strongly believe your groundwork will help you. As you noted there are a lot of questions, yet where are the answers??? I went in search of anything possible that I could think of to add or possibly positively add. I am 51. I had a tubal when I was 38. Immediately after that procedure there was never any menstrual cycles. At one point my Mom purchased an over the counter product for me and I have been trying to find the name of it online. It, to the best of my memory was around 2001 or 2002. I know it was from Walmart over the counter and very expensive…well to me it seemed so. I am thinking the name was Estrovert or Estro…quite honestly the only way i would know is to see the package. Point: I did find that the ingredients in that product did help my mood swings; irritability and feelings of anxiety. The one ingredient i found a little disturbing when I tried to use a generic or store brand was the black cohosh (spelling incorrect) I by know means am at all medically directed nor inclined to promote. This is merely a statement of a product that worked for me. As far as “Answers” (trying to stay on topic here, apologies to any/all) I did find several articles under the JAMA Network via search results on Adult Autism and some relating to Menopause. I do not know if I am allowed to post any links here so if you have not checked that site, I highly suggest it well, I suggest it. (at one time i did do medical billing-insignificant, just a little about why/where I go to for answers in trying to help, if at all possible). Staying on topic, as I look back up to your question, I think that your exercising and water would be beneficial. As for myself, I find that if I spend time (I am very much a loner) watching children play or petting a dog or just walking around where I can observe yet not be required to participate (heaven forbid with me!!!) in simple fun pursuits, allows me a feeling of calm and peace. Which, then generates a well being feeling, thus reducing my negative/moody self. One other thing that may be helpful, I am not certain, though it has saved me from times of inappropriately stating something not in a yelling (close to it) Aspie induced loud voice, something which I may later regret (and believe me I have done that before)…POINT…I have read somewhere that if one allows about 7-10 minutes distracting their self from a “potential” mood swing (?) be it aspie; menopausal or other induced situation before they (I) speak or act it can be beneficial in the overall outcome. I can attest to this personally! Again, I look back to your question. I believe from what I have read here posted by you that you will handle the whole process better for most times. Hopefully, you will forgive yourself any and all transgressions! As far as the years … the sites state for peri; pre and then the final MENOPAUSE…I am uncertain on that, it has been 12 years for me I still have periods of “night sweats” that being said I am not really bothered by that as much, it does wake me up but luckily they do not seem as bad as with/for others. I do find milk calming??? I don’t know if this is of any help. There is no scientific response to this from my end…i just never liked it as a child and oddly craved it after the tubal? So being me, I figure that into the whole scheme somehow. Not that I can prove it, just a thought. Well…overall to answer Your question, I have a high belief that you will be able to handle it – THE ROLLER COASTER…and yes it is one…a little better. Never to assume. I merely note from reading the things that you post that I can definitely empathize and relate to a lot of what you type me being a non-action taker…I am thinking and believing that your being more action oriented will help you. It is my biggest wish for you that it does. My best, and I do apologize for the veering and rambling. Sincerely and Thank You…Kimberly

    1. Oh apologies: I typed “Autism” in my post. I apologize for that, I don’t like making mistakes (of course, I am pretty sure the world won’t end!) and also the “know”…is actually “no”…okay. Clearly a word person who needs to proofread!!!

    2. Thank you for the detailed input and the kind encouragement. I do try to deal with things actively as they arise but this is turning out to be quite a challenge. Mostly I keep telling myself that it’s finite so in the worst case I’ll simply outlast it. πŸ™‚

      I’m reluctant to try the synthetic/natural estrogen supplements because it just seems like more messing with hormones, though I’ve read that a lot of women find it helpful. I also read about black cohosh and I think passed it over as an option too (can’t remember why now). Generally I don’t like putting stuff in my body unless I can be relatively sure that it won’t cause more problems than it solves so I’m cautious. I’ll definitely check JAMA for more articles. I think the article I found on Vitamin E for night sweats might have been published there.

      Your advice about being patient with the mood swings is helpful. I’ve been trying to recognize them and sort of observe from a distance when I catch myself in one, which seems to help. Also doing things that are calming and generally being easier on myself help too.

      I wasn’t sure when I posted this how many other women would share so I’m grateful to you and everyone who has!

    3. I have been encouraged to take black cohosh by a herbalist. As for being active I have a now unflinching respect and love for the universe and all she throws at me. I have taught myself to roll with the punches she throws as they are always in my best interest. When I am out of the rat race i feel fine. I can cope and am very happy. Perhaps this is the lesson, no?

  6. I’m recently self diagnosed. I’ve always had bad mood swings in PMS so I already was doing sugar free and daily exercise, and by comparison, perimenopause hasn’t been that big a deal for me so far. Stress reduction has been key.

    1. It seems like there’s such a wide variety of experiences. I wasn’t really struggling with mood swings kuch until recently. Makes me wonder if my hormonal fluctuations have intensified maybe. It’s great to hear that you’ve gotten off relatively easily!

  7. I am grateful to you for tackling this topic. My mom went thru the change in her mid-fifties and getting feedback from her has been worse than pulling teeth (I am 46). You make a very valid point, that differentiating peri-menopause from ASD is difficult. I have always had emotional regulation issues. I have always been intolerant of heat. Is getting worse? I have no idea. I do not connect well with internal states–you covered this in one of my all-time favorite posts. I feel essentially the same. The only difference I have noticed in myself is a grand shift into emotional maturity. I feel embraced by compassion and wisdom. It has been a major cognitive shift for me, not that I lacked in empathy before, but something has blossomed in my brain and it is definitely connected to my body.

    My greatest challenge with the change will be recognizing my physical and emotional symptoms. I live in a little bubble of now, amnesic of my past unless I re-read my journals. Women like us can forge a path for our younger sisters. I am grateful to you for breaching the topic and I hope we can all keep in touch and share our experiences.

    1. I know what you mean about not recognizing what’s happening. It took me probably 2 years to put all of the clues together and them go “oh that explains a lot!” What you about coming into a new place of compassion is something I’ve been feeling very strongly these last months. It feels like a product of age and something else I haven’t put my finger on yet but it’s a very good place to be. Thank you for sharing your experience with it. πŸ™‚ I hope that women of generation talking about these experiences and about aging on tje spectrum will mean that our younger sisters have more information than we do.

  8. I have a sign on the back of my Entourage that says, “I’m still HOT, it just comes in Flashes Now!” When they come and I am in the car I turn the A/C on full blast and raise my top! The girls get really hot! Yes I am complaining! With the Hot Flashes I could go from a C cup to a B cup in one day! Let alone what is happening with the neck and my long hair! Damp is not the right word. Soon it stops. I feel like the dog that sticks it head out the window!
    I also love my comforter and I am always going to bed cold. Freezing, putting on footie socks in winter I use legs warmers too! As my engine warms up inside by 3:30 AM I am pulling things off. Thankfully, I do not get many night sweats but I am hot and since I drink loads of water I am always going to the restroom at about that same time. It also does not help that my two teenage sons stay awake all night long.
    Most of my lack of sleep ends up with a ASD fight between both boys or some sensory thing going on with them in the wee hours of morning
    I just grin a bare it ! one way or the other

    1. It took me a minute to realize that an Entourage is a car so I was momentarily impressed that you have an entourage with a sign on it! πŸ˜€

      My night sweats are like that–just complete floods that sometimes wake my husband up before they wake me up. More than once he’s woken me up to tell me that I’m sweating, which only makes me crankier. Always an adventure I guess!

  9. When does the perimo stuff start? Must research that. Wonder if hormonal IUD has any impact on it?
    I am not autistic (I think) but some social and mood disorders are part of my PTSD (I understand) so any tips for dealing with that are welcome anyway.
    Have been feeling pretty tired lately too, didn’t really think of menopause related symptoms tho (am 41). Hmmmm.

    1. Apparently any time between mid-thirties and fifties. I’m 44 and it feels like it’s been happening 2-3 years. The first obvious signs for me were suddenly irregular periods after decades of being like clockwork, plus the night sweats. Looking back, the increasing fatigue, difficulty concentrating and sleep disruption were all there too, but I attributed them to existing stuff getting worse for some indeterminate reason.

      I’ve found exercise really helpful for the mood swings and just generally taking things a little easier when I can helps with the fatigue.

      1. Yeah, I have had little exercise lately and must agree that might make all the difference…
        I don’t think I have much of the other symptoms now but honestly, didn’t have menopause on my mind at all, probably good to be a bit more aware..ah, I don’t usually bother much with worrying about my age lol but 40 is a bit of a tipping point. The least we can do is being attentive and a bit kinder with our bodies.. Which will also help the mind. Really good reminder πŸ™‚

      2. I had a ‘last blossoming’ at 42. Every man and his dog was after me. I was pumping out hormones. It was horrid. Then it levelled off a bit and the perimenopause started at about 45 with a massive change in my body chemistry. My teeth were suddenly covered in plaque, I had heartburn constantly every day. Violent moodswings. My eyesight went from perfect to thick lens glasses in a year. Ears clogged up. Then the hot flushes started at about 49 along with weird periods. Sometimes I was on all the time with this weird brown stuff like myconium (babies first poo). Sometimes Id miss out a month altogether. One day I got into the car for work and flooded through a towel and into the seat. I had done some major cleaning up of my lifestyle by then so the heartburn had become manageable (reducing stress, giving up smoking, apple cider vinegar, cut down processed foods or alcohol) but then I began getting what I thought was arthritis. So started magnesium oil and further improving my diet. I was flying on the social front at this point having overcome all my communication issues.

        I havnt had a period for a year now.

        But things took a real tumble in early spring when I got flu (I dont have colds), a lump on my breast and such painful joints that I went on a major detox. I was sleeping through the day and night so I just gave up ! Everything ! and shut myself away inside my house.

        Bit scared of going down the old depression route again but I just call it ‘resting’ and I’m fine. All my old Aspie symptoms have come on full wack. Im incredibly dyslexic, even numerically. I dont answer the door or the fone. Ive dived into studying. My hands swell up in response to diet. As does my intestine: Diarrhoea piles, bleeding gums. The brain fog is immense. Im Dizzy. Can’t remember where I am when I first wake. Ive trained myself to remember that my glasses are usually on my head ! Where is that once formidible mind that remembered TOO much? All the same symptoms as the bucket term ‘fibromyalgia’. Auto Immune Response. Same symptoms as HIV sufferers. Inflammation. Food Intolerance. Now I’m thinking of cutting out wheat altogether. And no men, well not boyfriends anyway. No interest !

        Crazy, but I’m incredibly happy for the first time in my life. I’m loving the lack of pressure to succeed that Ive always flayled myself with. Ive trained my mind to meditate constantly so I have no thoughts running around like little gremlins in my head growing into monsters. I am in the Here and Now.

        I AM very worried about my old age….I need to go out and work so I can carry on being able to do what I’m doing now. I dont know if I’ll be able to be in the Rat Race again now Ive found Nirvana. When does it end Girls?

        1. Wow , your physical stuff sounds like hard going but I’m so glad you’re happy. The more I read these comments the more the perimenopause makes sense as I’ve surprised myself by my extra-strong (and final) reactions to stress lately. So now I am working on my own and very socailly isolated , but happy too. Not VERY happy, I’d like one soulmate or partner for that, but happy. But this isn’t why i started to respond to you..i wanted to check- in the midst of all your dietary changes , have you tried fermentation. The good bugs in sauerkraut, kefir , kimchi and sourdough really seem to do me good. (And I went from the stinkiest to the most neutral or even sweet-smelling poos when I changed!)

      3. I love that you put mid-thirties and fifties! The low end is something a lot of doctors won’t acknowledge.

        The extra brain fog and PMS started when I was 40 and the doctor told me it couldn’t be Perimenopause. I am 47 and have gone from a monthly period to every 21/2 weeks to 3 periods in 6 months. I only just found a new doctor (female) who is on-side and look forward to HRT. My good friend (with ADHD and Aspie traits) started ‘the weird stuff’ at 38 and finished having periods at 47. For all those years, her doctor denied the possibility of menopause up until two months ago when she went in for something else and got to say, ‘Oh, by the way, I haven’t had a period in 8 months.’

        Funny, sort of. She really suffered with night sweats (sheets and clothing change EVERY night for about 2 years), as well as other ironclad meno. complaints. Most of the symptoms can be dealt with like others have mentioned, but if you struggle and your doctor won’t help, save yourself and check with another doctor or a naturopath.

  10. I am 46 years old, just recently realized I was aspie at the age of 45 (a few months back!) needless to say I was releived on the one hand to finally find answers to so many questions about my life and behaviors. yet kind of sad about the realization that I really was never “normal” at all. (But I also like this fact as well?) I feel lost. On top of this mountain of frustration, I find myself experiencing perimenopause. There isn’t much online regarding female aspies going through the change, so I appreciate your blog so much. What complicates matters is that I have suffered from a lifetime of depression, and cannot use anti-depressants as I have reacted badly to more than on e, so that’s off the table. I am not sure if it is true of aspie’s, but I tend to have adverse reactions to most meds? I am not very tolerable of drugs as a whole and tend to have “side effects”. of course the side effect of the three anti-depressants I tried over the years was always a severity of the depression (scary). The other huge factor in my life is that I have been diagnosed for over 10 years with FMS and CFS (Fibromyalgia and Chronic Fatigue Syndrome). I have autoimmune thyroid as well. I was wondering if being aspie’s have more autoimmune issues? I only found help when I became desperate and finally listened to a friend who kept saying I needed to be gluten free. I usually rolled my eyes at her (she’s also a vegetarian, so I thought she was just to strict!) I finally went gluten free and it made a HUGE difference in my health. after 6 months and hitting a wall, (not feeling good again) I finally decided to ditch all grains and go on the SCD diet – and this has helped me tremenously – I felt so moody I literally wanted to die, then when I went on this diet it at least took the severity of the depression thoughts away to a degree. But yes, I still suffer from many issues that are health related and many mood swings, I am a work in progress ans trying to get through this maze, at 46 years old I feel like Alice in Wonderland, I never felt like I really fit in anywhere…, and this perimenopause thing is very difficult – especially since my hormones have always been a problem – severe PMS issues my entire life as well as post pardum depression both times I gave birth – so I am probably already a bad hormone case, but of course the ob/gyn knows nothing, and only offers birth control or synthetic progesterone? both which I react horribly to (of course!) I have found the black cohosh to be very soothing but I have to empty the capsule out halfway or elese it is too much – so if anyone wants to try it, start with a lower dose. Thanks for your blog, it helps to connect with others so I don’t feel so akward and alone in this universe.

    1. It’s good to hear that you’re finding the blog helpful. It can be so hard to find options that work when you’re autistic. I wish there was more information about the unusual reactions that autistic people seem to have to medication. I always seem to have the “1% or less people experienced” side effects. I’m glad you’ve at least been able to find some natural options that work for you.

    2. Thank you for the tip about taking a low dose of the Black Cohosh. I also seem to have a hyper reaction to most meds and generally break prescriptions in half but never thought about doing that with supplements. I’d hate to miss out on some relief just because I forgot to aspie-size it πŸ™‚

      I have no thyroid and also suspect that autoimmune issues add to our already tricky balancing act. I just went through a Thyroid Storm (hyperthyroid poisoning from my meds); after being on the same dose of thyroid meds for 2+ years, that amount suddenly became waaay too much and I ended up with tremors, heart fibrillations, crazy bone pain, liver damage and black thoughts like I’ve never had. My periods have gone sideways over the last year and suspect some kind of hormone link/gap/interactivity between the two issues is to blame. Doctor does too – but has no clue as to the fix.

      Exercise, music and gluten free have helped me as have Candida therapies (as little sugar as I can stand, no yeasty food (yeast is also a flavoring used on snack foods like rice chips), Grapefruit seed extract to kill the yeast, lemon water)

      I’m seeing an Endocrinologist next week and hope to get some direction.

  11. Weirdly, I went through the whole thing and never even noticed 😦 I went to my GP at one point about something else and she asked when I’d last had a period. It was a year and a half previously, I said. “Then you’ve gone through the menopause,” she said. I was like, “I have?” 😦 It was news to me – my periods stopped, that was all. Unless I’m being particularly dense about myself and just never noticed mood swings etc (it’s possible) πŸ™‚

    1. I should add, what I thought was that I was in the perimenopause, and I was kind of expecting the bad stuff to come along sometime soon – the hot flushes etc. But it never happened.

      1. I envy you! I’ve heard other women say that they had a relatively easy time, so I guess that’s just the case for some us. Things have improved a bit recently for me. I’ve gone a whole month without night sweats and I’m sleeping better, so that’s been a nice reprieve. Looking forward to it being done with.

  12. … I’m 52 and have been in menopause (or premenopause for over 2 years now) I had nightsweats only 2 times at the beginning – but do wake up feeling hot around dawn. So funny. I’ll be freezing from neck down but I feel as if I have my head in an oven.
    At any rate, I just turn on my little night stand fan for a few minutes & can often fall back asleep snuggled under blankets, only to wake up a few minutes later completely freezin’ again… I’ve been wondering why this stage of my life has been so easy, but maybe there are coping mechanisms at work in this. After all, I’ve been fairly uncomfortable all my life so this is a piece of cake! The only other issue is my weight – I am 40-50lbs over – I carry it fairly well, but over the past few years it has crept up. I am now on a regiment of fruit & veggies for about 80% of my diet. I have always loved herbs, spices, and natural foods and avoid meds like the plague. But after the death of my parents, and some major changes & family issues, I went in & out of some extremely deep depressions which, being self-employeed, dramatically affected my income, which in turn led to more depression & weight gain all alog that dark road.
    But several things have come together, gradually over the past year, including beginning to question Aspergers, & reading lots of info online which led me to finding this amazing site recently!
    Meanwhile, I am still working hard (very much the outdoors type which my job frequently provides) With my junk or easy food cravings subsided I am bound to lose this weight!
    I TOTALLY identify with the extreme high – extreme low – which I feared was bi-polar – when I’m manic, I get SO MUCH DONE and my creativity levels are thru the roof. I can feel when I’m coming down and leveling out.
    Also, I have learned to notice when I’m going into a depression. I have only one confidant who knows I have the depressions. My kids do not even know the depth. I have spent my whole life trudging thru them as if walking thru a wall of thick glue – trying to pretend Im fine by going thru the motions and a serious amount of ‘acting’. Too bad it doesnt pay celebrity wages! I’d be rich!
    Ok … may be rambling again, so finally, I want to mention a natural help for night sweats, and hot flashes is Black Cohosh. I took 540mgs about 2-3 times a week at the beginning of this blessed event – I just take one every so often now. I have a personal disdain for pills or any kind of med, being convinced proper foods provide true health.

    1. The night sweats just stopped about a month ago. No warning, nothing. They got really bad for about 6 weeks and then nothing. I have no idea what happened but I’m thrilled. I’m still taking the vitamin E just in case but will probably try stopping it at some point to see what happens.

      I know what you mean about worrying about being bipolar. I was having the same thoughts not too long ago. The ups and downs are so extreme and don’t seem to be tied to any actual life events. Everything feels so chemically driven.

      It’s great that you’ve had a fairly easy time of it and found good solutions. I’m hoping that the worst of it is starting to wind down now. Fingers crossed . ..

  13. I have aspergers and perimenopause. The last two years have been horrible. I am currently in the process of moving to take care of my dad who’s developing dementia and I will be home schooling my son, also aspie. I am so fatigued. None of my existing coping skills are working. And I have to do it all by myself. I just want to hide in a hole.

    1. I hear ya. Hiding in a hole is really attractive a lot of days. My coping skills are becoming less and less useful the longer perimenopause drags on. 😦 Hopefully things will get back to a more normal level of hardness once this hormonal upheaval passes.

  14. Best line, “I hope not twelve”. LOL! Sleep is my cure. When I’m moody, stressed, fatigued, memory is worse-sleep works. Though I can sleep for 7 hours, 9 has always been my magic number and I still have weekends where I sleep 10 (before the noisy boys wake me).

  15. I meant to post this ages ago – but the best book EVER on menopause is:

    Hormone Replacement Therapy:
    Conventional Medicine & Natural Alternatives
    by Linda Laucella

    She explains the med side in detail, and then the natural choices – so great. And some of the book is most-often-asked questions format.

    Ladies, if you go to Amazon, or used books on-line, I hope you can still find a copy. I bought-up about 5 of them a couple of years ago. I kept one & gave 2 to long-time clients, 1 to sis-n-law, 1 to old friend from school – all ladies about 50.

    I’m just sayin … the best book ever on menopause.

  16. Great topic! I often think that as awareness of girls’ experiences and needs has only just recently been included in diagnostic criteria across the spectrum, the corresponding lack of information for perimenopausal women is very high. In my own quest, finding resources has been challenging. I want to recommended this website which has very cutting edge research, and practical tools for all stages of women’s reproductive heath: http://www.cemcor.ubc.ca/

    Keep up the great dialogue πŸ™‚

  17. There’s a conference about woman aspies in september in scotland. I would love to meet you all….I need to organise a lift car share cos im in the SW england.

    I want to share with you about menopause and the possibility of the wheat link.

    Wouldnt it be wonderful if, after all these years, we could feel physically and mentally well again.

    What if this whole thing is just a compounded reaction to the twentieth century ?

    http://www.autism.org.uk/news-and-events/nas-conferences/all-conferences/2015/women-and-girls-on-the-autistic-spectrum.aspx

  18. lol Marlyn …since menopause has been around since the beginning of time . . .
    by ‘this whole thing’ I assume you mean Aspergers …which is an extremely interesting thought – the possibility that our unique brains have evolved in some way – digressed other ways to simply cope with or retreat from the massive dynamics of this century …
    But since I’ve started learning more about Asperger’s, I keenly wonder about certain historical figures – particularly artists. Two simple examples: DiVinci and Bruegel, and so many other sorts of historcal figures thru the last few centuries who seem to possibley have had Asperger’s …

    It is conceivable that each decade or half century has either rejected, tolerated, or worked to learn more about an individual who seems different and this would have had some impact at least on coping mechanisms and education.
    In the dark ages people seen as noticabley different were often locked up – other cultures recognized savant qualities in certain people we once called mentally retarded, and exalted them or burned them as witches, while other physically different people were exploited for financial gain.

    I feel really fortunated to be in this century and this era where information and acceptance abounds with the
    miracle of connecting these ideas via a 2.5×4.5 cell phone which I am typing on and is not even connected to a wire . . .
    Im already curious about what we will learn in the next century regarding Asperger’s and a thousand other things … (if the goverments & zealots do not shut everything down, and the planet remains intact)

    1. dear signlady, of course you’re right. OK perhaps we are sensitive barometers to changing environmental influences. The guys at the edge that find certain factors unbearable before the rest of the population succumb. And, of course, the ones that get out there and change it. Pathfinders? I would like to think that what we go through has to have some sort of use. And to be quite honest I love my Asperger’s brain…..I want it back ! I dont like this fuzzy muddled fluff ball occupying my head.

  19. … I wish I could come to Scotland. First because I LOVE all things Scottish – I go around doing a Scottish accent all the time … lol
    And secondly, bc you and I would have some extremely amazing & satisfyingly indepth discussion!

    I have signwriter friends in Scotland I have not seen in years … maybe someday I will get to go!

    I wish you all the best!

  20. I’m 33, asperger, and in peri menopause. Just came down from a horrible hotflash. My entire face was flaming red even. My husband had to cover me in ice packs so I could breathe. My meltdowns and total shutdowns are more frequent. I’m even flipping off cops….because I don’t like his face. **groan** I’m going off the deep end with the change and being autistic.

    1. Would you consider HRT? I was not keen at all but it has changed everything for me for the better. I still suffer a little with hot flushes but the improvement in my aspie symptoms has been dramatic.

      1. Carrie, read all the replies here on this subject.
        There are so many all natural ways to work thru menopause.
        With a brain that functions completely differently from the majority of brains on the earth, any opportunity to avoid drs & their meds should be considered.
        Please try black cohosh herb for your hot flashes. You can get it cheaply just about anywhere. It works for me.
        Best of luck to you, & remember, this too shall pass.

        1. Thank you. I’ll look into it. I believe the change in hormones is creating meltdowns and shutdowns at a more frequent rate. I’m utterly exhausted.

          1. … yeh … the discomfort is uncontrollable, seems illogical, and is usually very inconvenient. It’s akin to the same assaults on your ‘being’ as loud noises, or social interactions, or anything that causes individuals like us to have meltdowns.
            Menopause is added stress.
            Try to find the book I mentioned in another reply on here. It is full of fantastic info for comparing hormone replacement therapy with natural remedies to help you make the best choice for you.
            Also, I observed & realized my hot flashes occur more frequently when my body is ‘ovulating’ or ‘cycling’. The rest of the time I hardly have any symptoms.
            Your body still cycles even in menopause. If you can notice when that is for you, it may help you plan & at least ‘feel’ more prepared to act rather than react as you feel assaulted by your own body.
            You know thats what it feels like. You get this AMAZING gift of no more menustration but in exchange, your body seems to be turning against you in assault. It’s hard not to take it personal … lol

            Since I think so strongly in pictures and with extreme logic, when I experience pain or other issues like menopause, I tend to picture things that cause the issue, running a ‘film’ of things I’ve read about the issue, picturing the internal body, and also seeing things that are supposed to help, etc. If there are gaps in that film, I will go find info at the library or google. If I have erroneous info I will ‘edit’ my images – delete & add new info.
            In essence, I’m so focused on these extrapolations, I’m thinking about everything EXCEPT the pain, or discomfort.
            Although we may have ‘issues’ with our autism, and will experience meltdowns, we also have fantastic strengths & mental abilities. Tap into your strengths, and discover what abilities & inate skills you have with your amazing, unique mind & use those skills.
            Like most of us, you have probably ‘scripted’ & ‘adapted’ all your life to feel more comfortable socially, mentally, & physically. You can now use those same skills to work thru menopause.

            Remember, it’s the end of an ‘era’ in your life you’ll probably never want back!!

            : )

            1. You and I are insanely similar, it’s superb! Thank you for the long reply. I had a rather large shutdown two days ago so I’m not back to my normality as of yet. I’ll have to read your response once again after I climb out of this.

      2. Hi Sarah. I would love to know more detail of how HRT helped your aspie symptoms and exactly how much of each/bio-identical or generic/pitfalls and benefits (you know, the no-detail-too-small Aspie Version :).
        Hormone Birth Control was awful for me, so hearing that HRT works for an aspie fills me with hope and possibilities.

        1. I’ve been on a HRT for a year now and I feel normal most of the time. Have to say it probably took a good 6 months for it to take any effect.

          As for symptoms. Well I found, and still do to a lesser degree, that all my aspie symptoms (intolerance of noise, heat, smell, touch etc) were significantly heightened. Now I can see that it is when my estrogen levels are high they are much better. I’m not sure what else to write but am happy to answer any questions you may have.

    2. Carrie, you’re honesty is awesome!

      My kids are horrified because I have started listening to hip hop at full blast – suddenly I have the angst and anger of an inner city kid. The lyrics used to seem brutally graphic but these days they fit my mood. Good grief, what has become of me πŸ™‚

      My quiet obsession with justice is lit up, too. I have to take care to avoid the news channels when scrolling through; my man says the house sounds like a sports bar when I watch the news, with all my full-volume ‘you suck’, ‘come on!’, ‘are you kidding me?’, ‘idiots’. He thinks that part is funny but doesn’t like how quiet I get after a bout of tuning in. It’s like I’m an open channel on short wave radio and I can feel the pain and frustration of everyone on that channel.

  21. I’m 57 almost 58 and an aspy dealing with the menomonster. I hate it. When I’m up I’m good, totally secure and confident. But when the menomonster attacks I’m a scared rabbit, cry a lot and fight the anxiety that hits me. 2014 was the worse off all I was so sick with the horror moans out of whack. I want this to end. So I can have my asperger’s “normal” life back.

    I had breast cancer 15 years ago and my doctors say that the chemo makes you worse in meno hell. They are speaking the truth. I feel like I’m in hell but not every day now like I have been the past few years. Yes the summer heat will make your menomonster roar more as the heat makes you burn up your estrogen and progesterone faster.

    It all sucks. My bosses are so helpful to me. I don’t know what I would do with out them. I’ve worked for them since 2003. I plan on retiring from their company. But damn I just want balance again. The menomonster makes my autism worse when I’m under attack by the horror moan levels being off balanced.

    Has anybody every wrote what it’s like after this hell is over? I can’t even find that answer from people on the internet who aren’t on the spectrum. I just want to know what it’s like after we are done being attacked by our bodies…

    http://www.ARealLivePinkBat.com is about me, my breast cancer and my baseball career as a woman

  22. Norine, I read your story.
    Youre amazing!
    You GO girl!
    I like the word ‘horrormoans’.

    As I mentioned earlier, and add the ‘horm’ ‘team’ advantage IS the ability to recognize the regular ovulation pattern of your body – and therefore you can at least be prepared for the onslaught.
    I still advocate black cohosh.
    But sample other herbs that work well for menopause too.

    Remember, it is just a pause in your extremely incredible life.

    Read all the replies here as there are interesting & viable ancedotes.

    It is interesting to note the lack of ‘life after menopause’ stories.
    One lady told me THAT’S when I will FINALLY lose weight. She said it will just fall off. I suspect she was just tryin’ to cheer me up. For the last 4-5 years I have gradually gained about 20 lbs, in spite of my physical daily work. And in.spite of extreme healthy eating for over 6 months now, AND NOW meticulously counting calories for a month, I have not lost one pound.
    According to my calorie-counter-app, i should be losing anywhere from 4lbs to 27lbs a month.
    lol.
    Apparently this app is unfamiliar with menopause . . .

    In her book, Hormone Replacement Therapy, Linda Laucella claims menopause does NOT cause weight gain, and a proper healthy diet will maintain weight. I LOVE the rest of her book.

    At 31, I was a size 7. At 32, I got pregnant, had a baby. I nursed baby for 8 months but remained a size 11 for 2 years. Now over the past 20 years I have very, very gradually creeped into 18s!!! ACK!!!
    And I’ve always eaten fairly healthy have remained active, continue to work physical job, etc.
    I have a lot of muscle, but it is completely insulated with fat …

    So WHAT GIVES?
    Certianly not my weight.
    It’s GOTTA be the intrusive hormone imbalance.

    The next phase of my counter attack is 5, then 10lb wrist & ankle weights when walking.
    And the alleged ‘metabolism boost’ where you run super-fast for 30 seconds a few times during a walk, or run in place real fast for 60 seconds throughout the day.

    Meanwhile, if I ever get out of menopause, it should be obvious, I will tell the entire story of what it’s like . . . lol

  23. Sorry to take so long to write back. But this summer heat here in Vegas is making both my autism worse and the menomonster too! I got to make a trip to Los Angeles and the 94 degree weather was just so perfect for my brain, my body. I wanted to bring the weather back with me two weeks ago.

    I’m glad you like what I wrote. Nobody writes about when the good stuff comes back. And it is just not in the timely manner we want. Today I’m having a horror moan day and a “I want my mommy!” day with my brain. This sucks but I know it will be gone someday when the menomonster leaves for good.

    Then my brain will be okay and I can deal with my autism a lot easier. The horror moans make me feel lost, insecure and cry on days like this. Thankfully it’s not every day now. But I wish I never had it to begin with. I’m totally okay being autistic but I am not okay being autistic with menopause. It is just a horrible ride that I want off of…

    So yes please do stay in touch. I’m on Facebook. So friend me. All of you. We have to stick together through life to get through this body mess.

    Norine Rathbone

  24. I think what happened with me was that peri-menopause brought with it frequent “meltdowns” which had been rare for the previous 30 years. Trying to figure out what was going on led to the understanding that I have AS. It sure seems to me that my AS traits have intensified. With the disproportionate gender distribution, it seems likely there’s something hormonal going on.

  25. Thank you for this post. I’ve been having all kinds of weird things going on in the past year. Mental (brain fuzzy, forgetfulness), emotional (roller coaster–able to handle my life one minute and wanting to hide under the bed the next day–oh, right, my bed has drawers under it, can’t hide there), and physical (cold except after I sleep an hour or two, mysterious shortness of breath, fatigue way more than usual, my hair texture changing, of all things). But it never occurred to me it could be perimenopause. I have endometriosis and am on bc pills constantly to suppress periods so the lack of those isn’t going to give me a clue. But I bet anything this is what’s going on and it’s your post that has enabled me to get even a glimpse of what is going wrong with me. So thank you! I’m off to my doctor to see if a hormonal blood panel will give us some clues.

  26. Hi musingsofanaspie,

    I wonder how are you doing by now, still in perimenopause? I am not an officially diagnosed Aspie but everything points to that. I am officially perimenopausal though. It’s been a hell of a roller coaster. I am having a hard time trying to cope with all the symptoms (apart from vaginal atrophy I guess I have all the other 33ish) and also having to take care of my 88 year old father. I am desperate now, not sure if I can manage this. Is there any anti-depressants or SSRI’s that are more suitable for Aspies?

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