The final post of a three part series (read Part 2)
While many of the intersections of autistic and female in my life have been social, there are undeniable physical intersections too.
The arrival of adolescence brought with it hints of what it would mean to be an autistic adult. My first real meltdowns. My first experience with depression. My first confusing encounters with physical intimacy.
With nothing to compare those experiences to, I assumed they were a normal part of being a teenager. Everyone said that being a teenager was hard. I couldn’t dispute that. It didn’t seem necessary to look beyond the explanation of “this is hard for everyone.”
That would become a theme. Pregnancy. Breastfeeding. Postpartum depression. My body’s reaction to birth control pills. Countless books and magazine articles assured me that these things were no walk in the park. Not knowing that I was autistic, I had no idea that I might be having a rougher time of it than the average woman.
It wasn’t until I hit menopause–and the hormonal fireworks that come with it–that I finally realized something was different. Not just with how I was responding to the hormonal changes of perimenopause, but with how I was coping with life in general.
At first, I had no idea that perimenopause had begun. It creeps up slowly and because I was barely out of my thirties, the word menopause wasn’t part of my vocabulary. What I noticed, instead, was that I was having a lot of difficulty coping with the daily demands of life. It was harder to concentrate on work. I wasn’t sleeping well and felt tired all of the time. I was moody and quick to cry over the silliest things. But the most surprising development was a new resistance to socializing. Being around people I don’t know well had always been uncomfortable, but suddenly it felt exhausting.
Ultimately, thanks to the hormonal changes of perimenopause, my autistic traits became too obvious to ignore. This led, in a roundabout way, to my realization that I’m on the spectrum. And that feels like a fitting sequence of events, because the cognitive challenges of menopause are turning out to be much greater than the physical symptoms. Yes, the irregular periods and night sweats and sleep disturbances are hard. But it’s what’s happening in my brain–the way “the change” is changing my cognitive function–that’s taken center stage for me.
Forgetfulness, concentration problems, anxiety, fatigue and mood swings are often listed among the “other symptoms” of perimenopause. Thanks to my autistic brain, I already experience those things to a greater degree than the average woman. Menopause has ramped up the intensity, but I’ve had years to develop coping strategies.
The “symptom” I’ve been struggling the most with is one that you won’t find on any typical list of symptoms. Three years into perimenopause, my language processing has developed some glitches. When I write, I leave out words and make odd substitutions. Speaking is an adventure in trying to remember which noun I’m looking for.
At first, I thought maybe my brain was broken in some new and scary way. When I blogged about my worsening language glitches, I was stunned to hear from dozens of autistic women in their forties and fifties who had similar experiences. Other discussions on menopause revealed more common ground. I wasn’t the only who was suddenly tired of the effort it takes to pass for “normal.” I wasn’t the only one having more meltdowns or struggling to cope with day-to-day responsibilities. There were a lot of “me too” replies, too many for them to be a coincidence.
The autistic female body is fundamentally different, it seems. We start out with an atypical baseline. Add in hormonal fluctuations and we get Menopause: The Deluxe Bonus Edition. Thankfully, I finally have what I lacked during those other hard stages of my life: community. I have other women–women like me–whose experiences I can look to for comfort and wisdom.
*
Throughout my life, being autistic has shaped my experience of being female. But how has being a woman shaped my experience of being autistic?
Because I’m new to being autistic–that is, to knowing I’m autistic–this is a harder question to answer. My autistic traits are an indelible part of me and always have been. Whether I was aware of them as autistic or not, they influenced me at every stage of my life. Now that I recognize their autistic nature, I can look back and see how they have made me who I am.
Perhaps the greatest impact of gender has been that it helped to cloak my autism. I grew up in a time before Asperger’s existed. Children of my generation were much less likely to be diagnosed with autism if they could speak and were in a mainstream classroom.
My teachers realized early on that I was different from the other kids. They labeled me gifted and designed a special curriculum to keep me busy. They enrolled me in the town’s gifted classes. They tasked me with helping out the reading specialist and the librarian. They even tried to skip me over a grade, a move that my parents wisely blocked, reasoning that my already painfully shy nature would put me at too big a disadvantage with kids two years older than me.
Even as an adult, autism was a hard explanation to consider. I skirted it for years, buying into the Rain Man stereotype, not seeing myself in the descriptions of boys who loved airplane engines and men who had no social lives. It wasn’t until I discovered Tony Attwood’s writing that I realized there is more than one way to be autistic.
Girls can be autistic too. In fact, there was a detail in Dr. Attwood’s book that made me gasp out loud. In explaining how autistic girls often have interests that appear to be the same as typical girls, he described how one of his patients liked to play with Barbies, but instead of making up pretend scenarios for them, she enjoyed lining up the dolls and their clothes.
I felt like I’d been struck by lightning. I had a huge collection of mostly hand-me-down Barbies and their clothing and what I most loved doing was laying all of the items out on my bedroom floor and sorting them by type. I had far less interest in dressing the Barbies or sending them on dates than in ensuring that each of them had exactly the same number of dresses and pants and shirts and shoes. I could spend hours sorting and distributing their clothes. Once that was done, I’d play with them for five minutes and pack everything away until next time.
If an adult walked by and glanced in my room, they would have seen a little girl playing with her dolls. Only if they’d watched carefully would they have noticed that I did the exact same thing every time. Classic autistic behavior camouflaged in a girly disguise. If I’d been a boy with a love of sorting batteries or radio parts, my autistic traits may have been more noticeable.
As girls, we learn to hide in plain sight. We hover at the fringes of social groups, giving the impression that we have friends. We sit quietly through years of school, creating the illusion of shyness. We let older girls take us under their wings, mothering and mentoring us in the social skills that they sense we’re lacking. We learn that there are rules and we set out to master them as best we can. We learn that we have roles to play and we struggle to fill them, often at the cost of our self-esteem.
*
Coming to understand that autistic girls and women have somewhat different traits than autistic boys and men made it clear, finally, that there was a place on the spectrum for me. Not only that, there were other women like me, other women who shared similar traits and experiences.
I’d spent decades feeling like I was an anomaly and suddenly here was an entire community of people who understood.
As I’ve read the experiences of other autistic women, I’ve come to realize why autism is described as a spectrum condition. As autistic people, we share much in common but we are also different in many ways. No one is autistic in exactly the same way that I am. This has given me permission to be me–to see myself on the broad spectrums of womanhood and humanity–and to embrace myself as I am.
I’d like to say this is a done deal–I’ve accepted myself and now I can move on, brandishing my shiny new self-image. Perhaps that will be the case one day, but for now, I am a work in progress. Each time I think “yes, this is it, I’ve got it now” I soon find myself unpeeling a new layer, discovering some aspect of myself that I’d tucked safely away.
In the past year I have rediscovered the joy of stimming. I have unearthed a playfulness within me that I thought was lost. I have begun to learn how to share my feelings and speak up for myself and identify my wants and needs. I’ve opened up doors inside me that I was once frightened of even approaching.
There is a joy and a terror in this kind of self-discovery that is akin to the best roller coaster ride ever. Again and again I find myself nervously climbing that first hill, anxiously anticipating the first drop and then, finally, with a shout of joy, giving myself over to the thrill of the ride.
Musings of an Aspie 
I think you should write that book as your next one: Menopause: The Deluxe Bonus Edition. 🙂 There are none out there for Autistic women that deal with that topic…
Yea I was always baffled at how the women who had post partum like me or raising kids or depression always seemed to do a little better. It was confusing because it always seemed a little harder for me and I felt so alone when they’d say, “Ive been there too” but I saw that really- they hadn’t in the way I had and I could not figure it out. It hurt and felt like a failing tender point. Now that I know I am Autistic, I expect that result and it makes the world of difference to just know that fact. Now I know it will always be a little different, perhaps harder, than my non autistic peers…but at least I have words for it and reasons now. It’s still a baffling struggle at times but most of the confusion has cleared.:)
That would be a really short book since I haven’t figured out a whole lot about this menopause thing yet. Except that I’m not a fan. 🙂
Your second paragraph is so so important and I think a lot of people who don’t fall into a minority group in some way fail to grasp that this is the reason why labels are so important. They’re not for soup cans or dryers or any of the other silly analogies people use. Labels help us understand ourselves better and find our people and that’s huge. So yes, baffling and hard at times but at least with the knowledge of why we can head in the right direction when looking for answers or strategies or support.
I’ll be keeping this comment of yours – my mum doesn’t understand the concept of labels being a good thing and I could use this to explain 🙂
YES! The whole “labels are for tins” argument grates on me too! Apart from anything – a label is only a noun, and all nouns are labels – the reason why (well meaning) members of the majority struggle with some labels so much is because of the stigma that is attached to them. What they don’t recognise though, is that in advocating for the discarding of the label, they are actually adding to the stigma rather than challenging it.
Also – those of us who are minorities need labels so that we can define ourselves, articulate our experiences and challenge the cultural imperialism of the majorities who (whether consciously or not) erase our perspectives and our culture by saying “but it’s like that for everyone” or “no THIS is normal”. A label is just a word – and how can we tell our stories without the words?
Very well put!
yup
I was going to say the same thing about your title “Menopause: The Deluxe Bonus Edition”. It would be a great book! Maybe it could be an anthology. Stories from Aspie’s who are entering this part of our lives. I’ve come out the other side of what I think was the hardest part of menopause (for me anyway) and knowing know what I know, I really do believe that all of my Aspie related symptoms accelerated the most as I began peri-menopause. I wish that I had known then what I know now.
I’m sure that having Asperger’s is what made it so difficult. OCD, Anxiety, sensory issues were through the roof. Not sleeping well, waking up, fatigue, sweats, it was hard. If I had had the understanding, the wisdom that this was normal for me, that I would get through it, I’m sure it would not have been so hard. Heck, my life in general would have been so much easier, made so much more sense. Yes, labels are so very helpful and I am grateful to have one, a name for what I have been dealing with. The label does not limit me, it empowers me to know, yes, this is what I’ve been dealing with. I’m not crazy, stupid, worthless this is me, my way of being in the world. Having a book like this “Menopause: The Deluxe Bonus Edition” would have been so helpful. I think of it like an “Our Bodies, Ourselves” for the Aspie female. Sign me up!
Oh, and today, December 4th, 2014 at just before 11AM this morning, I received my diagnosis. After 53 years of not knowing, I now know, I am on the spectrum, and were we still using the term Aspergers, that would be my official diagnosis. As it is I am called, Autism Spectrum, Mild, aka, as my doctor says, who has been diagnosis and treating for over 15 years, Aspergers. Just call me Aspie. Thanks for this amazing community. I am so happy to be a part of it!
Oh yay! Congrats – it’s a great feeling (I got my diagnosis 30.10.14). Giving it a label really helps. Really pleased for you – it’s an early Christmas / Hanukkah present 🙂
Thank you! That’s what it feels like. To those not living life as an Aspie (it feels so good to write that word and have it refer to me) they might think I had two heads being grateful for this diagnosis. Me, it was one of the best days in a very long time. 🙂
Totally ditto to that 🙂
By the way, congrats to you too for getting your diagnosis! ❤
Thank you 🙂 I’ll admit that I take great delight still in stopping and saying to myself ‘I’m an Aspie’ – it feels like I’ve won a really great prize!
Oh, I agree! It’s only 24 hours old and I am processing so much through my head right now.
There is a part of me that wants to write a blog post saying to the world:
“If any of you have been offended by something you feel or have felt I have said or done that did not fit into your definition of “socially acceptable” let me take this opportunity to say that it was never my intent, and from this moment forward, I will never again apologize for being me”.
I will end the blog post with a picture Mrs. Betty Slocumb (Are You Being Served) giving the heads up Pbbbffftttt! two fingers on either side of her nose.
Or I might use Bubbles from Ab Fab. If I could post a picture here I would.
Here is to a really great prize!
Congratulations! I was thinking about you and wondering how the assessment went. I hope it will be as useful to you as it was to me.
Thank you 🙂
Congratulations on your diagnosis! That’s such terrific news and I’m so happy for you! 🙂
I love the idea of an anthology and perhaps somewhere down the road that could happen. There are quite a few of us here, it sounds like, who are in some stage of menopause and our experiences are so varied that we could cover quite a few topics.
Congratulations! I hope you find this as healing and useful as I have.
PLEASE PLEASE PLEASE do write that peri- and menopause book.
Ha- you should hear me talk now. usually the words i use are related – sound-wise or conceptually – but oh, how my kids think i am nuts:
“get your bowls on!” [boots]…”make sure you don’t forget to clean your house” [room]…etc.
Love,
I can totally relate to that. The other day I told my husband that I didn’t finish the topping on my sundae because it had all ended up in the morning (by which I meant “bottom”) of the bowl and was too sweet.
I’m curious whether you’re experiencing language problems other than word substitution or retrieval problems?
Good question…I have a hard time putting emotions into words and expressing myself during any time of sensory or emotional intensity…And my brain is just – cluttered and foggy right now! …The Peri.
I sometimes speak in opposites, I’ll say hot when I mean cold, it’s very frustrating and embarrassing! I must be going through pre menopause
myself, I have been having more autistic difficulties now that I haven’t had in the past.
I wish my teachers had considered me to be gifted, they thought I was a bother! I had trouble speaking, so reading out loud was extremely difficult, (and add social anxiety to that!) if you can’t read out loud they assume you can’t read at all! I almost forgot, I was also dealing with double vision, can you imagine trying to read out loud when the words are moving around??
Reading out loud has always flummoxed me too, even now. I end up sounding really robotic because that’s the only way I can manage to not run words together and trip over my tongue on every third word.
As soon as I read the part of your post involving word retrieval or substitution problems it reminded me of something I wonder about. I am a dyslexic (very mild) and I have problems not so much with phonemic processing (one of the main dyslexic issues) but with what is called rapid naming. I think it is generally referring to how quickly a person (usually a child) can “name” a letter, but I suspect rapid naming issues affect all kinds of retrieval operations including what sort of ideas come to the short term memory easily. Sometimes I call it the direct object disease because I can start the sentence okay, but I just can’t retrieve the last part.
My family and other families I know have a veritable technicolor combination of aspie and dyslexic traits, even within the same individual. I wonder if some subset of autism (I suspect there are multiple causes) is an epigenitic change of a dyslexic brain type. (or vice versa). At least in my family it seems that some parts of the brain are aspie and others dyslexic. Indeed my daughter with Asperger’s is also dyslexic. (She reads extremely well because of visual memory I think, but spelling is atrocious). My other daughter is very dyslexic, but just a touch of aspie. Could Asperger’s and dyslexia be the flip side of the same coin? Could a love of detail be an epigenetic twist on what would otherwise be a big-picture thinker?
By the way, I never seem to have rapid naming issues when I’m really into what I’m talking about.
I have “direct object disease”! In fact, in my notes for my neurologist, I specifically mentioned direct objects as being especially problematic. These days I get hung up mid-sentence more often than not on some days. And yes, I’ve noticed that with speech, I’m usually more fluent when I’m very interested in a subject, which is fascinating to me.
I don’t know a huge amount about dyslexia, though I’ve read a bit because more than one person has suggested that maybe I’m dyslexic. I couldn’t find any documentation of acquired dyslexia at a later age so I kind of stopped looking. What you’re suggesting is interesting. It’s nothing something I’ve seen anyone suggest before but it’s intriguing for sure.
This sounds a lot like my brother and I. I have Asperger’s and while my brother exhibits many aspie traits his diagnosis is ADD and Dyslexia.
By the way, I never seem to have rapid naming issues when I’m really into what I’m talking about…….theres a clue there !
totally
What a journey! Thank you for writing about it.
🙂
Yet another post that makes me stop and think, and wonder. I’ve always thought of menopause as something that happens to others – mainly I guess because I’m still ‘only’ 42 but equally because I don’t really relate to most other women (I don’t how much of that is due to being gay, how much to being on the spectrum etc.). And not having had kids (of the human variety) I’ve not had that whole being a woman motherhood thing and ticking biological clock. Reading this I’m wondering if my poor sleep patterns, increased introvertness and increasing inability to find the right word are actually perimenopause combined with aspieness. It’s worth a cogitation for me.
The whole concept of perimenopause relating to Me is actually quite strange. I’m not sure I like it. It’s making me feel older (when inside I still feel like a confused teenager) and like I should be a ‘proper’ woman yet I don’t feel like I fit into that box and don’t want to either. Very strange. And so much to think about. And there was me thinking that a diagnosis would bring clarity!!! 🙂
I didn’t realize I was in perimenopause until at least a year into it. More obvious sleep disruption, night sweats, increased fatigue, weight gain around my middle and an irregular cycle (after being like clockwork) should have been clues but I was also 41/42 and not even remotely thinking about it. I think, however, early 40s is on the early side anyhow, so that was probably part of it.
Recently, it feels like some of the worst of it has lifted – at least the baffling mood swings that come out of nowhere and the intense fatigue for no reason and gaining weight just looking at a cookie. The night sweats, OTOH, are the gift that keeps on giving . . .
My problem is that I eat the cookies as well as looking at them. Sighs, and thinks about chocolate….
Oh, wait, is it eating the cookies that’s the problem? 😛
Only if you’re a professional couch potato like me 🙂 It appears that an exercise bike only burns calories when you’re sat on it and pedalling – I’d assumed that the mere act of hanging your clothes on it was enough 🙂
I had my last period when I was 47, two in one month. Leading up to that time I had been skipping periods on and off for at least two years leading up to that time. I don’t have a relationship with the older women in my family, my mother included so it was hard to know what was “normal”. I knew that I felt young to be experiencing the symptoms, and even now, after so many years (54 in January) I still feel like I am too young to have gone through menopause. I look in the mirror and see lines and wrinkles and wonder how I got to be that face looking back at me and how it came so fast and I want those years back, knowing what I know now.
I still have the sweats from time to time but it is much better. In my younger years I seemed to never be able to get warm. Now I am hot most of the time and turn the heat down and open windows to sleep at night (and we live in the Minnesota area where winter is a thing). It’s funny actually because my husband and I have flipped. He used to be the one that turned the heat down and slept with open windows. Now it’s me and he is cold.
My husband and I seem to have flipped internal temps too. He was always the warmer one and now I’m the one who turns the thermostat down to 60 at night.
My doctor explained the skipping periods on and off thing as a cycle that would come and go a few times – skipped periods with more night sweats, etc and then more regular periods with fewer symptoms. I seem to be on the third cycle of skipping/sweating right now. 🙂 And it’s great to have a community where some of us are older and can pass this stuff along to the younger generation around this “virtual knitting circle.”
“virtual knitting circle.” Love that image! 😉
I think I should add my experience to the knitting circle and as I didn’t read the post when it first got published, I’ll insert my comment here.
Before menopause, my period had been getting heavier and heavier over quite some years. I knew the end of it was approaching and that I would just have to wait it out. So I waited and waited, bleeding getting heavier all the time until it almost didn’t seem to stop not even for one day. I was tired, yes. But what would the doctor tell me if I decided to see him? Most likely it would be another waste of time because he’d just tell me to come back when the bleading stopped and he could see something. So I waited and got more tired and some days didn’t dare to leave the house.
Finally, the Expert convinced me, we went together, I got a referral to the gynecologist who gave me two options: a ten day cure of hormons or waiting till a hystorectomy would be inevitable. I convinced myself that ten days of hormones would be the lesser evil. Bleeding was reduced to normal. Some month of iron supplements took care of the aenemia and the tiredness vanished. Half a year later the hot flushes began.
Lesson learnt: I should have gone earlier.
But often seeing a doctor is a waste of time because they are unable to answer my questions (irritable bowl) or would just confirm my own diagnosis (broken rib right side front due to a heavy cough brought on by allergy, I never went because I was a 100% sure) and anyway not do anything about it. Or they would, even worse, tell me to take anti-inflammatory medicine when my thumb is dislodged (I managed to get an x-ray that demonstrated doctor’s misdiagnosis).
I have learnt to ask good questions when doctors are seeing the children or the Expert. I’m much less able to do that when my health is concerned. A high pain threshold most likely contributes to that.
That brought back memories of something from when I was still at school – thinking ‘I’m sure the excruciating agony I’m in isn’t as bad as it was yesterday’! All that having to ask for help combined with a hate of uncertainty doesn’t lead to a mad rush to a doctor!!
I’m glad you were finally able to get some relief. I can really relate to both waiting too long and to not having typical symptoms that doctors immediately recognize. Increasingly I feel like I’m leaning toward trying a bunch of stuff at home first in a lot of cases.
I dont know if you have noticed this. But when I first learn a new subject, or ponder a new thought, I am confused. It takes ages for me to gather info surrounding the new concept. It will jiggle about in my head for ages. I so have to sleep on it. For weeks ! And then, all of a sudden the understanding emerges. And wow ! what a result. Ive always treasured that part of me and consider it very aspie.
I do, also, get aha moments as well.
“I’d spent decades feeling like I was an anomaly and suddenly here was an entire community of people who understood.”
This is me, every time I read one of your posts (and pretty much all of your posts), and reading all the comments. Thank you so much for writing and posting, and for giving us a real (and no less so for being virtual) space to exist as we are.
I’m 52 and have progressed to the back side of ‘the change’, so I can definitely relate, especially about the language issues. But I became aware that I was on the spectrum 3 years ago, before those changes started, so I’ve gone into them knowing that, which I think has helped a great deal because I’m no longer wasting time (and becoming frustrated) trying all the things that are ‘supposed’ to help but don’t. It’s like being an explorer, looking for the right path, a lot of unknowns, but I feel like at least now I have the right guide book.
You’re very welcome. Thank you for the lovely comment.
Have things improved for you now? I am, of course, especially curious whether your language problems have abated.
Other than for the most annoying physical problems I haven’t really sought out menopause-related solutions. I read a lot about things that were supposed to help with mood and fatigue but nothing seemed attractive enough to try and now both of those things have mostly resolved themselves. I’m even starting to sleep better, which is nice. Really hoping I’ve hit the downside of things and the worst will be done with soon.
Things have definitely improved on the physical side, the night sweats seem to be gone now and I’m starting to make progress on the extra weight around the middle that I gained. I didn’t have much issue with mood swings, but I’ve been on propranolol since I was in my early 20s (prescribed for hypertension, but I’m fairly certain my hypertension was anxiety related for being on the spectrum and not knowing it, so the meds have been hugely helpful for treating that). I know that the fatigue is much improved when I exercise (as is the weight control), and I love hiking outside so I’m trying to create more specific rituals around that to help me keep up with it more consistently.
The language and the executive function issues have remained, but I think I’m getting better at recognizing where the issues are, so I’ve been able to either be nicer to myself about the mistakes, or learn when to take steps to mitigate the potential. I do a lot of seemingly random word or letter substitution when I write and I’ve started not typing the correct suffix a lot more, so especially when I’m writing for work I make sure to re-read stuff several times before I send it. And even then I don’t catch everything, but usually (I originally typed ‘usual’, but picked up the error on my third read through of this) you can tell what I mean by the context and most people assume it’s a typo rather than my brain really not seeing the difference between “and” and “as” (hey, they both start with A). When I type and when I hand write, I have always mixed up p, b, g, q and d, so I’ve had a lot of practice looking for those kinds of errors, but what has changed is that now I mix up whole words as well as just letters. When I substitute “why” for “and” or “boy” for “after”, it’s a little harder to explain. I have always loved creative writing, but after your post about the spoons theory, I realized that for me, as much as I love it, writing just takes (corrected from ‘take’) a ton of spoons!
The embarrassing one is that I’ve started saying the wrong word in conversation and sometimes I hear that what I said was wrong as I’m saying it and correct it, but sometimes I don’t realize it until I see the puzzled looks on people’s faces, and I have to ask what I said. But I’ve never been a big talker anyway so it doesn’t happen too often. It’s frustrating, but it is what it is and I think part of being the age I am is that I’m less embarrassed by it now than (I originally typed ‘that’ for ‘than’ and left out the ‘now’ completely, even though that’s what I was saying in my head as I typed it) I would have been a few years ago.
One thing my doctor suggested was to take an Omega3 vitamin, which I have started doing and it’s hard (corrected from ‘had’) to tell since I’ve never tried to quantify the errors, but it does seem that I might be making them a little less often now. But whether that’s (corrected from ‘that’) vitamin related, or it’s a phase that’s passing, or just that I’m learning new coping tools, I don’t know.
I definitely find that exercise helps with most everything.
I’m kind of clinging to the hope that my language issues will at least lessen when the hormones settle down (though that might be a silly notion given that the language changes steadily worsen when other hormone-related things seem to track together on an up and down cycle) so your comment is a bit discouraging. But as you say, it is what is and there isn’t much choice but to get used to it and adapt.
The errors you make are very similar to what I find myself making. Since the word substitution has become so frequent, I’m getting better at catching the words and either immediately saying “not X, I meant Y” or trying to switch mid-word, which seems to account for about half of the times that I catch myself slurring words. Of course, there are times when I have no idea that I’ve made an error until someone tells me.
I find myself talking a lot less because it’s both exhausting and frustrating. I’ve also tried to type more slowly, which seems to cut down on the errors a bit. And it really varies from day to day. Good days, like today, allow me to get quite a bit of language-related stuff done (typed “down” the first time) and on the bad days I now know to go easy on myself and not feel bad.
One interesting aspect of all of this is that I’m getting some cool glimpses of how my brain stores information. The other day I was trying to think of the word collage and found it by saying “that thing where you cut up stuff and put it together in a different way . . . not camouflage . . . not montage . . . collage!” I’m not sure I’d ever consciously associate camouflage, montage and collage together but conceptually they have things in common and they all sound similar so it kind of makes sense. Our brains are very strange places.
Yeah, I admit I am wondering if this is as simple as being part of the package of aging as an autistic. I watch my parents (both still alive and in their late 70s) deal with losing their physical abilities as well as other issues, and since searching for words seems to be a common accompaniment to aging in general, I think it makes sense that we might start to show those signs earlier than the general population, since our connection to language is often more tenuous to begin with.
I remember telling my mom when I was in high school that there just seemed to be some sort of fundamental disconnect between my brain and my mouth when I would try to verbalize things. I was always much better writing long hand (it always just felt easier to make the conversion between the ideas in my head to words on the page that way) than typing so for me it makes sense that my best medium is still hand writing, next is typing and a distant last is verbal. But I can definitely see where it would be so much more frustrating (and exhausting!) if I was used to being able to rely on my verbal skills. But I do feel like things are evening out now, so maybe it is like transitioning to the next level where the landscape is just a little different, and it takes some time to get used to is… I mean it. **headdesk**
And yes, how the filing system in our brains works is really fascinating, and it totally makes sense to me that you were able to get to collage that way! And I have absolutely had that exact same kind of conversation too, it’s like you have to mentally run up and down the aisles where any word with similar meaning and/or sound is stored until you find the specific one you were looking for. LOL.
Oh I love that image, mentally running up and down the isles looking for what fits. My mom used to say when I was little that both she, and we would lose our heads if they weren’t attached because we were forgetful.
I notice the things you are talking about with words, trying to find the right ones, I do it both in speaking and in typing, as well as hand writing. It’s like my tongue and my brain disengaged for a moment. I seem to be more aware of it now, at least in the past five years or so, but it may be that it was always a thing and I just had more tolerance for it. I know I am more aware of it now, where I will be having a conversation and just stop mid-sentence because I can not find the word or words to say what I want to say. Sometimes it’s because the word seems to have exited stage left, when I know it was there a minute ago, and other times, it’s like I never knew the word at all and grasp to express myself.
I fumble with my words, and my fingers(aka brain trying to convey the words) and just find myself auto correcting for those opp’s, and don’t always catch them. I do the word association thing sometimes too as I’m trying to find what it is I’m trying to say. Sometimes I see me struggling for words and think of stroke patients I used to care for that had experienced injury to part of their brain and were trying so hard to express what they needed. I thought I had compassion for them then, I think I have so much more now. My dad used to say “watchamacallit” all the time as he struggled for words, and he did this in his 40’s so it was not an aging thing.
I’m not too excited about developing symptoms of old age at 45, I gotta say. 😉 My dad (who recently told me that he thinks he’s also on the spectrum) is still very sharp at 81 and hasn’t experienced the sort of language problems that I’m having. But I read the experiences of others here and see so many similarities so I have no idea. Perhaps this is more common in women on the spectrum at midlife? This is like crowdsourcing our own WebMD entry. 🙂
it’s like you have to mentally run up and down the aisles where any word with similar meaning and/or sound is stored until you find the specific one you were looking for.
This is the perfect metaphor! I love it. Whatever is happening in our brains, at least we’re able to document some of it here for others to see and perhaps share their experiences as well. Eventually it will all add up to something. Hopefully.
Well I can happily say that Im out the other side of menopause and my brain is back on line. However, and this is a big however, this may well be the consequence of becoming kinder to myself. I tell everyone we have this little ol librarian scuttling around looking for info retrieval and, cos we have packed so many books into our library as we age, it takes a while for her legs to scuttle round the aisles. There is also the absolute necessity to want to find the word. My subconscious will balls things up on purpose if it thinks what I want to do, i.e. make it to the interview/make the good impression, will be no good for me.
I totally relate to the feeling that the longhand connection to your brain is more complete than when you type. For me my speaking is probably a bit easier that typing but not nearly so complete as when I put pen to paper.
I think we were diagnosed around the same age, though i’d always in the back of my mind suspected, once I had some idea about autism (not until my 20s) – it wasn’t until i started raising my son and HE was diagnosed…
BUT!
My main point is, I do find I identify fundamentally MORE with ALL people on the spectrum than i do with those of “my” gender.
Love, and big thanks,
and PLEASE, I am serious, this menopause stuff may do me in JUST as I ***finally** started to “get” things as an autistic woman!!!!! Or at least keep up the ood writing on it and I may try my hand too…
Good not ood.
“My main point is, I do find I identify fundamentally MORE with ALL people on the spectrum than i do with those of “my” gender.”
This is a great point! I hadn’t really thought of it this way, but I feel the same. I’m much more likely to feel an affinity with autistic women than women in general. Not as sure about autistic men as I don’t think I know as many on a personal level, but I totally relate to this sentiment.
I hope you’ll write something about your experiences with menopause. It’s a lot like trying to piece together a puzzle in the dark because it seems to happen so gradually over such a long period of time and there’s no clear “start” cue.
Like you, I am very much still processing this process – and the amount of energy left after the mood swings (again, like you, managed with the character and strength built over decades of difference and challenges; let’s note that meltdowns can be Entirely Internal!) doesn’t leave much for menopause musings 😉
But I agree sharing – as you have – is sooooo beautiful & helpful. i feel very much less alone today. I thank you for that.
The mood swings are really crazy-making. Thankfully, mine felt entirely chemical so I got pretty good at recognizing them and identifying when they had no basis in reality. Then it was just a matter of riding it out while avoiding people so as not to jump down their throats for no reason. 😀
HAHAHAAAA-EXACTLY.
Another great post. I’d like to reblog it in a day or two since I just posted a link to part 2.
Thank you for the kind words and the reblog. (I saw the pingback a few minutes ago)
… I’m also 52 and have progressed thru the end of an ‘era’ for 2 years now … I had night sweats twice over 3 years ago … I have ocassional flashes in the mornings which are over in 5 minutes or less with a fan.
As a teen and throughout my life, menustration was never more than an inconveinience … I swam, biked, played softball, basketball etc…
But other women complained about terrible things associated with their period. I could not identify.
Before I entered menopause, and during these last 3-4 years, I’ve listened to women talking about how horrible menopause is … but … its been I think fairly easy – OR IS it similar to the threshold of pain which is a coping mechanism which involves an uncanny ability to ignore things that are intrusive to my activity in those moments? I tend to think so.
Meanwhile, at least on the two jobs I have, I’m very active physically in spite of an extra 50lbs I do not need.
That said, Im struggling with trying to lose weight which gradually came on the last few years – I refuse to accept notions that menopause CAUSES weight gain, though I do accept that it may increase hunger, and it may make losing weight diffucult … I simply have not found the correct ‘mix’ of herbs that I believe will help a lot …
but … I have used and ocassionally take black cohosh. If you suffer from a lot of hot flashes & night sweats try this herb.
It sounds like you’re one of the lucky ones! I think I’ve been relatively lucky too. I don’t have daytime hot flashes, which sound terrible, and the mood swings and weight gain and fatigue were bad but not as bad as some of the experiences I read about when researching.
I think for me the weight gain was more about the way my body developed a tendency to easily gain weight around the middle, which was never a problem before and about how much I was craving sugar for a while. Changing my diet has helped with both of those.
I’ve read about black cohosh a few times and need to look into it.
and sage
Another great post! By the time I reach menopause/mentalpause, you should be through with yours, so I will gladly buy your book if you do write about Menopause: The Deluxe Bonus Edition. =D
And please let us know if the writing improves after these vile hormones are done ransacking our bodies. I’m already omitting words and having strange typos, I don’t want to think about how much worse it can get!
When I turned 14, it was like an autistic switch was flipped. One of many reasons I call them “horrormones”. Processing became hard, everything was confusing, I went almost completely nocturnal over night since that was the only time I could get peace, quiet, and alone time (and boy did my parents HATE that) away from my noisy family to be able to function every day.
And to make matters worse, being a tomboy suddenly became socially taboo in the extreme. I was now heavily criticised almost constantly by strange girls or women for not wearing makeup or tight clothing, despite the former burning my eyes and the latter being very painful. Hair became a big issue too, I loved having a long hair in a single braid, but they kept wanting to cut it off, wear it in strange and painful ways, make me let it hang sloppily all over the place so I couldn’t see a doggone thing I was doing, or, heaven forbid, do a foul-smelling perm/curl on it. They just couldn’t fathom why I hated that stuff and they really couldn’t understand my preference for a guy to value me as an intellectual instead of just as arm candy. To their frustration, I wrote each of them off as rude busybodies, masochistic bullies, and some I even called a vain whore to their face if they kept grabbing at my underwear and wouldn’t stop trying to give me sex tips. (I’ve been given sex tips on things to do with a naked guy since I was 14!) They didn’t appreciate that too much. One more thing I have to thank my dad for, he was determined to raise me and my sister to be strong willed and he succeeded. I’ve had nearly as many complaints for being “stubborn and disobedient” as I have anything. I think that’s one reason why those crazy females attacked me about my weight so much, it was their way of getting even for me not mindlessly doing every last thing they wanted me to. I’ve spent most of my life underweight and only this year have I been up to a normal weight range, and I’ve heard every insult from “vain” to “eating disorder” to “purposely antagonizing fat people” as the reason why I was a bag of bones and none of them correctly guessed “hormonal issue” or recently “new mother that can’t afford child proofing”. I tell all new mothers not to worry about the baby weight. Just stay home with the kid and don’t baby proof ANYTHING. Constantly grabbing your little climber off of every piece of furniture will burn off the fat plus some. I hit an all time low with being underweight when my kid turned a year old! Which is one more thing I point out to all those harpies that wouldn’t let me be and would go on these long speeches of how I’d die alone and hated: being the Frumpmeister apparently wasn’t that great a hindrance to my love life if I not only managed to get married and have a kid but I also met my husband at the height of my official cross-dressing stage with short hair and everything.
Since discovering I’m autistic, I’m tentatively looking forward to connecting with women for the first time. While it’s been fairly well drilled into my head I stand no chance of getting along with most women, the thought that there’s a very high chance autistic women understand my discomforts and we might even get to explore our feminine sides in a non-painful way is kind of exciting.
I definitely felt that switch flip in my early teens too. I suddenly became really emotional and started having full-on meltdowns for the first time.
It sounds like you had a rough time with people in your life trying to wedge you into gender stereotypes as a teen. Yuck. It’s sad that so many girls are subjected to that kind of treatment from older women in their lives. Especially when as you said, there are men who like all different sorts of women, including women who aren’t traditionally/stereotypically feminine in those ways.
It seems much easier for me to relate to other women who are autistic. I’d pretty much given up on having female friendships in my 30s because other women seemed so different and mostly incomprehensible. Meeting autistic women has been an eyeopener in a lot of ways and has changed the way I think about myself on quite a few fronts.
It truly was annoying. And my husband happily helps serve as bodyguard, so I can have my long hair again! I have help telling people to bugger off now. =D
I am still very much in the relieved stage of stumbling onto autism for all the explanations, like knocking out the likelihood of tumors and allergies behind sensory sensitivities and smelling things nobody else can. A chance of a bunch of women I can connect with is kind of icing on the cake.
Working out why I was so sensitive to everything was a huge load off my back as well. Sensory sensitivities can end up feeling scary when you don’t understand that you simply have a very sensitive nervous system.
So true! And it makes a lot more sense than some alternative explanations for why you don’t like stuff, like being intentionally picky.
Great post! I was almost 14 before my first period and while I had been “moody” all of my childhood, the switch flipped for me at around 17 when the anxiety increased. Never had many girlfriends. I did not understand them, or they me. I’ve had few adult women friends and gotten along better with men in work settings and in general. The women friends I have had were similar to my childhood experiences. I always felt I was on the outside looking in and trying to fit in. I’m truly hopeful that connecting to an Aspie community of women who get it will be a wonderful thing. I know it feels that way here through this virtual space.
It’s so strange how it does seem to be like a switch, isn’t it? It cranked up my anxiety pretty badly too when mine got flipped on. Makes me wish I knew how to flip it back off! Being an oddball and not fitting can be managed, or seems like it can be managed, but being as jittery as a squirrel that just drank a pot of coffee is another matter.
“being as jittery as a squirrel that just drank a pot of coffee ”
That made me giggle, Thanks and I can so relate! Having a diagnosis has helped so much with that. Instead of the whole pot now it’s a couple of cups.
I usually had one close girl friend at a time when I was younger and my adult friendships with women have been few and far between. The last female friend I was close with in real life up and died on me just when we’ve started to have a nice comfortable friendship. So that added another layer of deterrent on top of everything else.
Wow, that got maudlin fast.
Anyhow, yes, outside looking in is actually what I thought about calling this blog in the beginning. But connecting with people online like this has been such a blessing.
Yikes, you have been surrounded by a lot of Super Nasty Women! The behavior you described goes far beyond any Neurotypical women I have ever encountered!
Myabove comment was directed to Ashe Skyler.
Indeed! As strange as those women where, I don’t think “neurotypical” fits them, they sure seemed atypical of what I read and was told women would be like! Not that I’m implying they were on the spectrum, just that they were their own brand of weird. Or perhaps just way too materialistic? Couldn’t carry on a decent conversation with any of them. Even something as basic and universal as philosophy seemed to revolve around boys and toys. They lived to shop and flirt. I kept to old people, they had better stories and laughed more. =)
That sounds a lot like the kind of shit I had to put up with in the public school system in the far north. My hair was wrong. The way I tucked in my shirts was wrong. The things I was interested in were wrong.
But nobody seemed to think that there was anything wrong with putting me in lockers or garbage cans.
I never can for the life of me figure out why that stuff is allowed to happen. I was blissfully homeschooled, but I had plenty of friends with similar tales. And it was never just one bully. One bully is potentially manageable, but everybody always had tales of gangs or a playgrounds’ worth of them. Maybe the teachers are outnumbered too?
The worst are the teachers who see it right under their noses and do nothing. I’ve kept my kids out of the mainstream public school system.
I don’t blame you. I know my sister really wanted to go back since you can socialize more often than when the homeschool groups get together. I’ll probably let my kid start off in public school should he also have that desire, but the first sign of trouble (or his request), I’m yanking him out too.
One of my most scary moments was when I forgot how to spell my daughter’s name. I was sure it was the first indication of Alzheimers. Didn’t know I was autistic. Menopause has been pretty intense and I lose my words more often but it’s not so scary now that I know others are going through the same thing. Your blog has been invaluable to me, connecting me with my people and helping me feel normal in a way I never felt when I was trying to be normal (NT), if you get my meaning. Maybe all of us ‘mature’ ladies can put together a ‘how to get through menopause for autistic women’ website. I would start it if I could just get my shit together😄
It’s a great idea, and I have been thinking along similar lines. Now that I finally have a diagnosis (it was important for me after seeing so many specialists over so many years and not getting any answers) I want to advocate and support my fellow Aspies. I’ve been helped so much by this blog and the few others I’ve managed to find and there needs to be more. As my doctor said today, “there is still not a lot out there for adults”, and maybe even less for women, all across the spectrum.
That does sound scary! I’ve had a few of those moments recently. Can’t seem to make a proper handwritten X anymore unless I focus on it like a first-grader learning to write. Can’t tell 6 from 9 when I’m packing up people’s ring orders so I had to write out the numbers in words too. It’s funny how quickly this stuff just becomes the norm too.
I would start it if I could just get my shit together
Bwahahahaha! Exactly. I will seriously do something about some sort of crowdsourced information as soon as I get far enough past the hormonal nonsense to be functional again.
Ohhh, I love that image. Crowd Sourcing Aspies. We could all do the wave in our own fun Aspie ways.
For me, I had a different problem. didn’t think I needed a diagnosis. I was functioning just fine; I was coming into my own, accepting of all my flaws and generally doing okay. I’d moved around a lot; I was sure I could adjust to any new situation.
Well, it really hit home that I was different only when I moved out West and generally lived on my own. All of the coping mechanisms and strategies I’d used to get through the past 2 decades of my life were gone. The reason I was able to handle moving to a new location before was because I had the support of my family with me throughout that whole time. Now I was on my own. For a couple of months, I was stressed. I started humming more and talking to myself (all stimming). I started to stick with familiar things at first when normally I’d be more adventurous and try out new foods or locations. I was more autistic because that’s what I needed to cope on my own in a new location.
So I, too, have rediscovered the joy of stimming (much to my mother’s chagrin). I’m humming my way softly through life as if I were in some kind of Disney movie and talking to myself (not out loud!)….these were all things I used to do as a kid before I was told that it wasn’t socially acceptable. I’ve been more direct when the situation calls for it, and it’s been refreshing…I don’t have to think about how the social rules, just what I need to know (without overstepping my boundaries). Plus, the move has made me realize at last that I definitely need a professional diagnosis.
Heh and if you read carefully, there’s a bit of echolalia going on too! XD
“humming my way softly through life” – that’s cool 🙂 Stimming is fab and a great way of coping too.
Hurray for rediscovering stimming and loving it! Especially if it’s helping you cope better in stressful times. A big move to a new place alone sounds incredibly hard, especially going into it without realizing that you’re autistic or that you’d depended a lot on your family’s support in the past.
I denied that there was anything “wrong” with me for a long, even though others had suggested therapy, etc. on more than one occasion. I just figured they had a problem (mostly that they were too pushy – lol). Like you, I finally realized that something was up when my coping strategies started to fall apart.
I hope you’re able to get a diagnosis soon. Have you had any luck with finding a clinician?
Actually, I think I’m going to hold off until my life is more stable, but I sent an email to one of the clinics that your readers suggested on Facebook to get a better understanding of the process. I’m following their blog to learn more about Aspergers and autism too!
Definitely take it at your own pace! It took me a long time to finally make the decision to seek a diagnosis and then more time to actually start making calls and more time to settle on a place and then make an appointment. Baby steps (or just hanging out in place) are totally fine. 🙂
That is a real point. I thought id cracked the autism thing by being awfully brave and heading out into a world full of creativity and women. I became coherent and fitted in and got the job ! Until I became exhausted and thought Im cured ‘yer Ill just go get a house in the country’ and leave all this glitter and socialising behind . Aspergers has come back on like switching on a lightswitch. So I reckon theres such a thing as balance somewhere in there.
I was officially diagnosed with an ASD (Aspergers) less than two weeks ago. I am 47 yrs old. I am so glad I found your blog. From the little I have read so far, 98% of it applies to the experiences I’ve had/am having.
I’m so glad you found it too. Congratulations on your diagnosis! I hope it’s the start of a terrific journey for you. 🙂
Yes, I’ve given myself permission to stim, and follow my instinct to touch things that I want to understand. What does that fabric feel like? Do I like it, yes or no? Yes, I grin from ear to ear and want to share the sensation, or no, and I make a face and withdraw. I’m not hiding that anymore. In fact today after leaving my doctors office with my official diagnosis I did something that my hubby made his usual face about and I found myself speaking up and saying hey! That’s me, that’s a stim and who I am, and I am no longer going to say I’m sorry for being me.
We went to Ikea to pick up a few things I went to the kids section and picked out some wooden blocks for myself and myself and he said your getting those for you? with a why look on his face. I have always loved blocks and architecture and I’d put away that part of me since childhood. Guess what, no more. My playful, joyful self is now invited to be a fully present part of the adult me, blocks and all. I can see this is going to be a time of great discovery for me, and for him.
Here’s to humming through life!
I have to touch everything! I’ve always been like that too. As a kid, in all of our old home movies, I’m walking all around various theme parks touching the exhibits and statues and such, while the other kids are merely content to look at them.
And Ikea! I love touching the fabrics and rugs and kitchen stuff. Last year, we were walking through the kid’s section and I picked up a big stuffed dog to see how it felt. When he noticed that I really like the texture, my husband told me that I should get it. He knew that I wouldn’t have otherwise, because I would be self-conscious about how it might look. But once he said that, I spent the rest of the shopping trip walking around hugging the dog while picking out furniture. It was literally the least stressful time I’ve ever had in a store.
I love that you celebrated your diagnosis by treating yourself to blocks. Also, this is just awesome:
My playful, joyful self is now invited to be a fully present part of the adult me, blocks and all.
Aww, your husband is the best! I saw a couple of cute cuddlies yesterday too that I will bring home at future shopping trip. Adorable owl that is a puppet, and this cute stuffed bowling set that I will put away for the little Bean (what we are calling the baby on the way) that we are going to be grandparents to. I was touching rugs and blankets and playing with this great lamp that opens and closes with a drawstring. It looks like something out of Star Trek. It’s on my list but goodness knows where I will put it.
Congratulations on the soon-to-be grandchild! I’m a bit envious at all the toys and such that you’ll get to play with as part of grandparenting. 😉
And they’re never too young to watch adults playing with Lego (purely to teach them for when they’re old enough to build on their own!) 🙂
Oh yes! Good thought! My mother in law used to get on the floor and play with our kids (she was in her 80’s and 90’s at the time – a later mom and grandmom because of the RH- factor) and it always made me chuckle to see her sitting on the floor with the kids and their toys and games, legs sprawled, or chasing them around the house. I do miss her. ❤
Thanks, I’m looking forward to it! It’s also another bit of the puzzle for me. Since my own kids were little I liked to check out their toys at the holiday and had as much fun picking them out and watching them play with them as they did. My husband used to tease me about it that I played with the toys before they did. I can see now my tactile and childlike traits at that time and still. 😉
Thank you. This series of posts has meant so much to me.
Thank you for letting me know. 🙂
nelliepmoore, that is pretty cool.
good on you.
As a person who has perpetually lived with people frowning at me (which I had to learn how to differenciate between contempt, disapproval, confusion, or perhaps they were in some sort of pain, or I had to learn to even actually notice or care …) I totally get how you felt about the facial expressions.
Meanwhile, on the gender issue, does anyone find it interesting that there seems to be many more women posting replies on this site than men?
I am only going by names, which are most commonly used by females vs names that are commonly used by males, although I do understand people may not always regard these traditions. Also, I believe there are at least more than 3-4 places within this entire site where a sentence says, or implies, (in any context, and simplified) ‘more men than women have Aspergers’ – which I also find interesting when looking at replies by gender … so then this might be implying a standard belief-based-on-gender regardless of NT thinking, or Asperger-thinking, women communicate more than men/use more words/drift off topic with randomly connected-to-topic comments … etc etc
I’m also curious about the reason you create a part 1-part-2 etc of particular subjects, rather than continuing replies?? Is it bc of the tendencies of people to drift off subject for several consectutive replies?
Am I over-anylizing again??? lol
bc I’m told I do that a lot – in any conversation of depth, I tend to get quite put-out when people go into off-point related subjects, unless that subject has been completely discussed and is formally changed to the next topic, unless the conversation is ‘chat’ where people are expected to make cliche statements about weather, time, appointments, health, etc.
“As a person who has perpetually lived with people frowning at me (which I had to learn how to differenciate between contempt, disapproval, confusion, or perhaps they were in some sort of pain, or I had to learn to even actually notice or care …) I totally get how you felt about the facial expressions.”
Thanks! Yes, I’ve been very aware and alert to facial expressions, as well as the sounds that go with them all of my life. I never considered anything other than judgement-disapproval. However given that I don’t make a lot of eye contact or spend a lot of time looking at faces, I might have missed those other things. It was rather a jumble or sorts because on the one hand there was heightened sensory issues going on that would cause me to retreat – and on the other hand – with the overall dysfunction in the house – paying attention to those facial expressions and sounds of disapproval – anger etc. . were important to staying out of the way. I think it’s another piece that can complicate diagnosis. I carried the PTSD label for a long time. It’s still in my records. With my new understanding of how epilepsy effects a person (diagnosed in 2013) and now Autism, some of those labels and me as a whole are for sure evolving. Can’t wait to tell my psychiatrist about this diagnosis. She did not see it either, nor did she see the epilepsy or suggest testing for it.
As far as women posting over men, I’m not sure what the answer to that is. Maybe more men are diagnosed younger, as children so they are not actively searching for answers as much as women who are now seeking answers. Maybe it has something to do with a mother instinct as we want understand for our kids, though that is not certainly the be all answer because not everyone here has children.
We are seeking answers as we begin questioning what’s going on with us, and are lead here, and other sites for Autism-Aspergers.
In a parallel to your observation of women posting – pretty much every blog I have found and read is written by a women, and many of the posts are likewise written by women, at least as identified by the names given or details in the posts.
I do treasure and value the posts made by the men here. It’s helpful to hear those perspectives. Whether Aspies themselves, or parents of Aspies. I learn so much from them too. To some degree, I think the gender lines fall away a bit in varying degrees. We are all, male or female finding ourselves here for a reason, and we get each other. Even those who are not Aspie who post here also seem to have a better resonance in identifying with being Aspie because they are working with those on the spectrum as therapists, PT’s, OT’s etc.. They want to help their clients-patients and their families. 🙂
Reblogged this on humanitysdarkerside and commented:
“Yea I was always baffled at how the women who had post partum like me or raising kids or depression always seemed to do a little better. It was confusing because it always seemed a little harder for me and I felt so alone when they’d say, “Ive been there too” but I saw that really- they hadn’t in the way I had and I could not figure it out. It hurt and felt like a failing tender point. Now that I know I am Autistic, I expect that result and it makes the world of difference to just know that fact. Now I know it will always be a little different, perhaps harder, than my non autistic peers…but at least I have words for it and reasons now. It’s still a baffling struggle at times but most of the confusion has cleared.:) (Kmarle)”
thanx nelliepmoore for your insight and answers.
So now I am merely replying on this thread bc … I looked at other places within this entire site and the other places where my comments might be more apt to align with my subject have not been responded to for months … the subject is communication, which is diffucult, or can be difficult regardless of my own or anyone elses gender … simply human beings being the primary difficulty . . .
as I often say; the world would be a perfect place if there werent all these people … that is meant to kinda funny but people take exception to that regardless the truth of it.
With people, does anyone ever feel as if they are ‘on’ – this has nothing to do with gender. Its simply about having to reside with people on the planet …
am I describing ‘scripted’ behavior with this paragraph;
When I’m around certain people, let’s just use the example of
‘a few aquaintences at the local coffee shop’.
I will mentally go thru the bank of knowledge collected on this interaction – this bank holds things I’ve been taught and/or had to learn about communication such as nodding, being polite, making small talk about the weather, work, or local news that does not involve a large depth of concern or knowledge, and includes being prepared to listen to a lot of personal opinions seldom based on any real factual info about the topic.
Also, in my mental file of learned behaviors I have learned behaviours such as smiling a lot and saying things with bouancy like ‘HI!! How are you doin’ today!!’ and expressing the appropriate attention and concern over a death or sickness, or joy over a cute grandchild. (all of which many old people who hang out in coffee shops experience)
I also over the course of my life learned that while quick wit and sheer sarcasm can really tick some people OFF, if said properly these forms if communication can make people laugh, which puts me at ease and/or diffuses situations that seem angry, or sheds the light on how assinine some one in being.
I sure dont mean to sound as if I am manipulative, or a big fake sort of person. Perhaps these things are just coping strategies because of saying and doing so many apparently wrong things my whole life and ALWAYS being reprimanded in some way – it is very interesting how I’ve been reprimanded SO many times for being too blunt (or sheerly honest) yet, I can think of several occasions in my life where a person said something to me and another person commented about how they were amazed over how that didnt ‘hurt my feelings’.
So … confused … by that idea, like many things involving communication, I create jokes for these moments …
Person: “I cant believe she just SAID that to you! You should’a SLAPPED her! Did’nt that hurt your feelings?!!’
Me, laughing, “Feelings? I’ve been married 3 times. I dont have any more feelings.”
On the other side of these jokes which I merely use to take attention away from a communication situation that I failed to interpret, they can backfire bc sometimes I might get reprimanded AND backhanded on the shoulder; “Dont go around sayin you been married THREE times!!!”
Uh … i mean ‘er … I mean duh … i mean um I just cant win with people.
Sometimes, others dont read THEIR scripts right and laugh when their ‘sposed to.
Without comic recourse, my life woukd indeed be a tragedy.
Meanwhile, you see why one would choose to be alone when venturing out into the world at large. I think somehow, I would rather step in the proverbial cow-pie of communication failure and never know it, than to have it spelled out and made to feel like I am always at fault being either too aggressive, blunt, funny, or too nonchalant and lackadaisical.
Its simply an extraordinary amount of work that keeps one imagining a tight-rope walker spinning plates and whistling in perfect pitch at all times.
It does not matter how well or how much data you have perfectly stored on any subject, nor even how well you can access or utilize it. Other human beings, male or female, are the unpredictable variables.
I use humour and sarcasm (meant in a humourous way) a lot as interjections so that I’m seen to be contibuting to conversations without actually needing to ‘say’ much, and while most people seem to find it funny there’s one semi-friend who doesn’t seem to get it at all. I always think its obvious that I’m trying to be funny (and as others seem to laugh I can’t be getting it that wrong) but she’s really got uppitty about it to the extent that I’m always walking on eggshells talking to her and not knowing what to say. She even took offence once when I offered to lend her some study books! There was no possible reason for her to take offence at that yet she did. Very strange. So yes, you can’t win.
Yes, yes, yes to all of this, signlady. I definitely feel like I’m “on,” but I don’t think that’s limited to people on the spectrum. I know some introverts who do this as well. And many people have to be “on” under certain circumstances. But whenever people are around, I feel compelled to snap into being “on,” which can ultimately be exhausting. So, if I’m sick or haven’t gotten enough sleep or I’ve been “on” for a protracted period, it can break down. At my age, I’ve learned and practiced a lot of scripts, and I come across pretty well in general, to the point where I doubt I’d be diagnosed as ASD. However, I’ve finally decided to give diagnosis a try, with testing to commence next month.
I’ve relied upon humor, too. It’s worked extremely well for me.
A couple years ago, I read A Journal of Best Practices: A Memoir of Marriage, Asperger Syndrome, and One Man’s Quest to Be a Better Husband, by David Finch, and I saw that someone who can perform (literally perform) well at parties and other social situations can indeed be autistic, and that sort of set me at ease in my feeling that I really could be on the spectrum.
Thats so funny ! Yes ! I, and others, love my newly found dry sarcastic sense of humour ! I have folk in stitches. Its crazy to look back on the time I was socially awkward. Trouble is I actually MEAN what they think Im joking about ! I check in with loved ones sometimes to make certain Im not cruising too below the belt. Often with my daughters who are now grown up. They generally egg me on ! And I have developed the ability to laugh at myself also which helps. Such as one of the first times I began to ‘come out’ from behind the scenes on my 50th birthday, grabbed the Karaoke mike, pushing everyone out of the way and announced it was my mike cos it was my birthday ! Everyone thought it was hilarious !
PS
this part of this site may be more aptly identified;
‘At the Intersection of Autism & Humanity’
Your welcome and thanks for sharing your own insights and questions.
With respect to the question you posted-asked a couple of days ago about women and men posting on this blog, I’ve thought about it in the general context of how many men vs women are diagnosed at a later age – middle age and what I’ve found so far is that it seems I’m hearing more about women being diagnosed now. As far as women commenting here, I had a conversation with my therapist (person who diagnosed me this week) today and he shared that not unlike how in the NT world, women tend to be the ones who share more, ask more questions, the same holds true for those on the spectrum. Women tend to ask more questions and share more. It made sense to me.
The other thing that I brought up during the conversation were the current numbers on people diagnosed with Autism and as of when I started really seeing myself and admitting it to myself (a couple of months ago) the numbers were something like 1-66 or so that were diagnosed. He said today that in fact the latest numbers to come out were 1 – 50. To me that is amazing!
I like your identification title too, “At the Intersection of Autism & Humanity”
I think we are part of Humanity, however, perhaps like a different phenotype, we are one data set of the whole. I’m actually less surprised than I thought I would be at his mention of 1-50. I think we may find it is even less than that as we move forward in time. Why are we finding these numbers? Better understanding of Autism and the spectrum, better diagnostic techniques, or for whatever reason, there are more of us being born now than before – from any number and combination of factors, from diet to environment.
Related to your question of being ‘on’, if I understand it as you intended it, being on for me means being always ready to act, answer, appear ‘correct’ in a given situation. For example a friend tells me she is going on a vacation and she is all excited and I’m pulling from my memory how I think I am supposed to react to her news.
When in a social situation and I am supposed to smile, or say I’m sorry, or cheer. That energy of ‘on’ means I am always looking for what I am supposed to do next so that I don’t say the wrong thing, or say nothing when it’s expected that I should be saying something.
Like just now my husband asked me what I wanted to do about attending a gathering at a church acquaintances home whose husband passed away a few weeks ago. Does social etiquette say I should go along with my husband, and then when I get there I make small talk or no talk and look at my watch for when we can leave?
It’s not that I don’t care. I do. I’m sorry that she lost her husband and I appreciate her as a good person, wise women in the community . . . and I don’t have the energy to go and make small talk. To be ‘on’.
There might be another time when I can make the effort, and being in these kinds of community situations, it often is an effort, but this is not one of those times. I understand why now, and I am so grateful for that.
At this time I need my energy and focus for me and for processing this new information and identity that is me, and always has been. Putting on a persona so that I can go and attend a community event would be draining to me, and in the bigger picture, I don’t think I would be contributing to the gathering. In fact, it might again result in those behind the scenes conversations that sometimes make their way back to me secondhand, with comments like, is she okay, you seem tired, she was distant, aloof, cold. withdrawn, rude . . . I choose to let go of that need to be ‘on’.
It’s a decision I am making now, today, and it will grow stronger, as I begin to share the information of my diagnosis with those that are near and dear to me. With this information I no longer need to be on, or make apologies for being me, and I know that truth is going to grow stronger and more true for me each day and I celebrate that in my own wonderful way. I see my role with my new found understanding and identity of self as being one of advocate. My own personal feeling is that none of us should have to pretend to be someone we are not, to be on, in order to fit in this world. We can be caring, respectful, loving, wise, compassionate, intelligent, funny, creative, and so much more without needing to pretend to be someone or something else. 🙂
I wish we didn’t have to pretend so much. And I guess this is a very good reason for sharing a diagnosis so that when we don’t match up to society’s damn conventions there’s a chance someone might understand. I get that turning out for something like this can be seen by the family etc. of the deceased as a sign of how much they (the deceased or indeed the people themselves) were liked / respected etc. but equally if it was me I’d consider a card or a letter just as meaningful if not more so. It’s so complicated…
It can sure seem complicated. I’m going to pick up a card and send it along to her. ❤
Sounds like a good plan. It’s easier sometimes to find more appropriate words to express ourselves when we’ve got the time to think about them and plan them out (and change our minds, and re-jig…)
Fantastically written series. I identify a lot with you. Book has been ordered!
Thank you! 🙂 I hope you enjoy it.
I think it’s interesting that your social issues were understood as
shyness. I imagine that happens a lot with people on the spectrum, particularly women and girls. To me, this is an important distinction. Shyness and timidity can be associated with a lack of strength in personality. But when I read the writings of autistic women, their writings are strong and courageous, –often groundbreaking. I’m glad you pointed out that distinction: one can be socially inhibited, but not shy. One can actually be quite bold.
This is so true and is in fact a discussion that I had with my editor in choosing the book title. She wasn’t at all a fan of “shy” because of the negative connotations. I also think you’re right about girls/women being more likely to get a “shy” label and no one making much of a fuss about it, whereas a boy/man with the same disposition would raise red flags because it’s completely socially unacceptable. Whereas girls/women who are quiet or shy are considered to be things like “demure” or ” coy” or “easy to handle”. Gah. I almost couldn’t type that last part.
Wow, thank you! That was so well said. ❤
here here
Thank you nelliepmoore.
You are a very interesting thinker.
Can you identify with the following statements from people who know you
(before OR after diagnosis)
(bc funnily enough, a couple of people I am close to, and one daughter completely ignore me on the subject of Aspergers, even though they must see the facts, and they’re the ones who are included in often making these & and similar ones such as:
•It takes a lot of energy to be around you
• I would like to live in your head for one day
• I could not imagine living in your head for one day
• You are unusual/have an unusual way of communicating/you are different/most people dont think like you/you think differently than the rest of the world
• I dont get/ I THINK I see what you mean
This does not even touch on the various social faux pas that I make and for some reason, usually my logical fact-based reply means nothing …the responses are then …
• MOTHER!!
• I cant believe you sid that/ why did you say that/ what is wrong with you
•When we get there please dont say any thing to any body – just keep your mouth shut!
• No one cares about that subject anymore – stop talking about it/trying to bring it up again
•People do not want to hear about everything you imagine/create/want to make/made
• Why are you talking so loud?/do you know how loud you are?/Please stop talking so loud-we can hear you
Can any one identify with these comments?
This goes far beyond the chemical/brain-matter/social expectations & cliches of gender … and can be summarized in one question:
Should I just become a hermit?
I dont mean to sound as if im some sort of monster going around talking mean & hateful to people, or trying to be on a platform- absolutely not – and believe me, I totally see pins-&-needles, & eggshells all over the floor in social situations (for these sorts of comments all my life have caused me to ‘act’ certain ways that seem mostly acceptable when Im careful)
. . . A social situation that can be interpreted as wrong could just be things in the course of a simple conversation… I believe my tone is not the issue …(which is allegedly the problem at times)
Heres a perfect example:
My daughter & I see an aquaintence, who happens to be an extremely obese lady. In the course of the greeting period of the conversation, I am already going thru the mental files of facts about obesity (not going to go into the reasons why I focus on THAT fact about the person)… And then I share a fact . . . ESPECIALLY if the issue of health comes up, but not necessarily “Did you know for every pound of weight you lose it reduces 4lbs of stress on each knee!?”
Apparently, this is socially unacceptable interaction with a person, regardless of the insight and helpfulness it might provide for a person who needs the info more than non-obese people.
I said all that to say … yes, youre absolutely right! No one should have to walk around with a script and wait for the cue to say their properly written lines just exactly right – but I can not allow myself any ad-lib either … the stress of missed cues – ack.
The tone of the exasperated thespians.
‘Off-the-cuff’ is a BIG no-no disaster.
Social interaction is either a frantic roller-coaster of adreniline-filled suspense & excitement, or it is a train jack-knifing head on into a brick wall …
wow.
I sound REALLY defeatist.
You MIGHT be surprised to know that I am an extremely optimistic person who believes NOTHING is impossible, even in the face of tragedy & failure.
lol
This must be so, or I would have succeeded at checking out a long time ago. I owe all my sanity, and success to Christ. He is the One who totally ‘gets’ me, and I believe who led me step-by-step to this period of discovery at this . . . well, very accurately this intersection of my life.
Thanx so much to ALL here who can identify, anylize, struggle, regret, understand, grow, know, and continue to learn …
{‘:ͺ¬}
I get the ‘I THINK I see what you mean’ a fair bit – and it’s normally patently obvious that actually they mean ‘no I still don’t understand you but I’m giving up trying and trying to be polite’
But I often think the loud bit about my mother – I’m never sure if it’s because she’s going a bit deaf (but not that deaf by any means) or if, more likely, that she just doesn’t realise. (So many ways in which she ticks the Aspie boxes but I bet she’d be horrified – after all, “what would people think?”!)
And I didn’t know about the 4 pounds on the knees bit – that would explain why my knees are struggling a bit more!!
I constantly get told “I can’t believe you said that.” Even by people I don’t know that well! Nevertheless, I don’t seem to learn or I supposed people wouldn’t be saying that to me anymore. I guess the older the I get, the less I seem to care maybe? Probably not the best social strategy but it’s the only one I have the energy left to carry out successfully much of the time.
… I listen to the radio bc I do nit watch TV – I love NPR & talk radio. They play a medical news-byte everyday and that message on health is a frequent one.
Also, I surely did not mean to imply any judgement on overweight people – I just am prone to focus on something specific about any person and ‘blurt out’ some fact or statistic. I put that in little quote marks bc OTHERS think comments are ‘blurted out’ but in fact, I make comment from a collection of data that I mentally scan on pertinent subjects …
Also, did’nt mean to sound like every one treats me meanly – I have heard all of those reprimands (and others) all my life since I could talk it seems.
From parents, teachers, etc …
I also had to woek very haed to leaen, and often have to relearn facial expressions.
When mom, or the teacher leans foward and stares at you, or squints their eyes (glaring) they are in fact, NOT actually interested in the fact-based data you are sharing nor are they thinking about what your saying … they are trying to reprimand you without using words.
I always missed this and still do sometimes.
These things are like egg-shells and pins & needles.
Although I dont think egg shells would really pysically hurt a person, presumabley the eggs yolk & whites have been removed … but it woukd be a terriblely inconveinient mess to clean up – pins & needles would hurt without shoes – which is rather like an analogy for Aspergers what shoes are to feet is what socially appropriate behavior is to communication … without which my mind is barefoot as it were … so entering a social-skills required zone can be very tricky – I need some sort of thick boot – the name if it is ‘continous behaviour monitoring’ … hmm Ive never actually defined it before, but that describes accurately what I am always trying to do … it does not obliterate, but it reduces prickly situations.
I have often not cared either … its EXTREMELY exhausting to try to avoid ones own whirring PC, complete with non-stop pop-ups every single second of every day, located directely between the ears.
The eyes and ears are the ‘mouse’, everything they ‘click on’ , every single thing the eyes see & the ears hear brings a barrage of data – pictures mostly, or words read, every detail surrounding even when where the info…
It is no wonder I have had depressions, bc when job and home become overwhelming in top of my already busy mind, it is not advantageous to function. Your mind is like a body that has been awake for 36 hours. It must sleep. A depression may simply be my mind shutting down before it ‘crashes’ or blue-screens.
This is also the first time I have ever accurately described my depressions.
I really appreciate you all. Please excuse the long posts. I will endeavor to keep them down.
Space exploration is discovering the reality if infinity- The deepest parts of the ocean are scary, but so amazing & interesting. There are many similar concepts to enjoy on both extremes, and many unique things as well …
so it is here.
My mind is empty my mind is empty my mind is empty
Thank you for eloquently describing the journey I have also been on. Diagnosed this year at 42 I am finally putting together the puzzle that I have lived. Letting myself just exist and not pretend is such a relief.
Congratulations on your diagnosis! It’s an immense relief to finally just be yourself, isn’t it? 🙂
There seem to be so many of us around this age all getting diagnosed (whether self or official).
Congratulations! I agree, big sigh and relief. 🙂
so brave of you to dive into writing about all this. I’m going through the same change-over. Lots of trouble, [despite a ” I refuse to let this kill me off attitude”] and, I thought I’d share, even though there are already such excellent thoughts here already. This is what has helped me, I’m not claiming it will help anyone else, but if it does then all the better: 1. restricting carbohydrates especially refined carbs helps immensely with symptoms. 2. cruciferous vegetables every day especially helps. 2. exercise specifically fast walking or running or hiking, 4. caffeine and healthy fats every day. 5. Music and/or white noise in my headphones.
~ Here’s what I wish: that I had a running (walking, whatever) group of others like me.
Hope we can stay strong and moving forward, that’s all I can think about sometimes.
Yes to all of your suggestions! I recently started eating less carbs and have found it helps a lot with the fatigue, especially mid afternoon fatigue.
yes, me too ! I love it.
edit
could you please change the second 2 to 3? :p
I’m on mobile, or I would do it right now. 🙂
Lucy you are spot-on about the proper eating habits and exercise. I believe even small changes in eating habits and getting outdoors can improve outlook and helps me work toward developing good habits to replace poor ruts.
lol … I do not feel ‘brave’ at all but I would say it is a rather reckless abandon to just spell out these things – as one thinks and writes about these revelations pertaining to the initial revelation … it’s kind of like … meeting yourself for the first time and learning about yourself the way you do when a new person comes into your life.
At first – you sorta just take a new person with just what you see and log those details. But upon conversation, you discover similarities, some things you can totally identify with –
but I have never indentified totally or even partially with any person on the planet.
Its been pretty-much miss with a few very random hits on isolated specific subjects.
Now – Im identifying a lot with many here, and finally finding myself in so many ways, and able to pin down the fact that there is nothing wrong with me – I simply have Aspergers …. I dont think ‘Syndrom’ is an accurate word – it sounds too ‘medical’ … the ‘Gift of Aspergers’ would be more accurate …lol maybe sounds a little elitist –
at least the discovery has been a real gift in itself – when you can finally explain 52 years of inexplicable confusion, its a pretty big mental firework show and light-bulb display thats bound to be seen by others …
“at least the discovery has been a real gift in itself – when you can finally explain 52 years of inexplicable confusion, its a pretty big mental firework show and light-bulb display thats bound to be seen by others …”
Oh, I could not agree more! It is a gift for me in many ways and I am so glad to finally know. I saw a study yesterday that seemed to lump Aspergers – Autism into a Psychiatric Illness and they did not even mention (not that I could find) anything about the fact that this is neurological.
We have a uniquely wired brain. I wish they would get that, include that, form opinions and do research from that basis.
Bravo to you for being able to share and spell things out.
TMI warning mostly for men but I’d really appreciate other women’s help/thoughts. I think it vaguely fits in this discussion.
I always had very bad periods. Irregular, painful, heavy, weeks of mood disturbance and feeling ill. I coped by being on the pill for years. Now I want to stop the pill, or at least try. Things might have improved with age.
My question is how common is this for autistic women? I’m particularly interested in the pain and mood aspects because regularity or lack of regularity is less likely to be connected to autism.
I’m beginning to wonder if my atypical sensitivity to my body is part of the problem. I’m quite insensitive to a lot of pain but am sensitive to sensation in my lower abdomen. Also do the fluctuating hormones have a greater effect on our brains causing all the mood disturbances?
Has anyone been in the same situation as me? How have you learned to manage?
I’d love to stop taking unnecessary drugs and I’d love to get on top of this before menopause!
Mine would get bad in a weird way. Along with some expected pain, my legs sometimes go numb and tingling and then I sometimes during that I have trouble walking because it’s like it zaps all the strength from my legs. If I can down some Tylenol or Midol at the first sign of trouble, it’ll kick in and I won’t know much of anything going on. If not, no amount of pain killers are going to block it out, which I then resort to trying to stay asleep and unconscious as much as possible. I have no idea why it does that. I just chalk it up that the human body is innately suicidal and always trying to harm or kill itself, and I curse design/nature/whatever for it’s poor quality. =P
I don’t notice much of a difference in my moods. I’m still just as happy, sad, angry, and stable or unstable as before, but I do notice a decrease in my desire to suppress my negative emotions. I’m more prone to call out somebody doing something that really irritates me.
I guess you didn’t test positive for endometriosis? Some women have told me they were diagnosed with that and it was the cause for worse cycles for them. Or have you ever taken a bad blow to the back or stomach? One woman I knew had both, and she got to have a two week fiesta with all the worst of symptoms pretty much her entire fertile life.
I always got the “numb legs” as a teenager. Things seem to taper off a little in severity after my pregnancy and subsequent many years on the pill. Not sure if there’s a relationship between the two, though.
Very possible. Many women have told me they had quite the reduction in pain and symptoms after they had children. And then it gradually began to worse again and they thought long and hard about the pros and cons of having kids to ease up their symptoms again.
I’ve never had anything to do with birth control outside of the most basic and natural of methods, nor chatted much with women who uses prescribed stuff, so I have no clue on that part.
i have developed fibromyalgia throughout my menopause and that is similar. Numb limbs. Pins and needles. No energy in the muscles to hold the bones up. Constant pain. Ended up with my musculature collapsing and now my bones grind together and I cant walk the dog anymore. Doing a lot of work with weights in the gym and hot cold afterwards: saunas, infra red, pool, shower.
Another thing to make me go hmmm. One of my daughters has has this numb leg issue since her late teens. I’m not sure if it gets worse around her periods or not. I’ll have to ask her when we see her at Christmas. They get so numb that sometimes she will make a fist and gently pound on her legs, especially upper legs and thigh area. I hope after the baby is born that this is an area that does get better for her.
God, there is much to this that we don’t know about being an Aspie and a women – in a female body. I wonder if there are differences that the men – males notice too? Though I have not seen a blog like this one where the guys are talking about this? I hope there is one, resources for them too. There are only a few that post here and I’d like to hope that they are finding support too.
It’s been a while since my last period and the days when I had the kind of leg pain you are talking about but I did have it. I’d forgotten. It was worse before I had my second child. I could always tell days before my period because my legs, and low back would ache so much and they would be so heavy feeling. It felt like someone had hooked a set of weights to my lower body.
I’m past most of menopause now but I still have that heavy leg feeling a lot. At one point last year I went through a series of tests that included a lumbar puncture (spinal tap) because I thought I might have MS. I was pretty scared. They said there was no evidence of MS and still could not explain why my legs feel heavy or numb, why I was tripping and falling, the partial numbness etc.
Now I can see that most, if not all of it is part of being an Aspie. I wonder if the thinning and or bulging spinal discs I have, and the spurring are also related or made worse. Reminds me that I need to add my diagnosis to my medical records. . .
That does sound frightening… I’m not too terribly surprised that some of us could tell days in advance when a period is coming on since our five senses are commonly hypersensitive. I tend to have this strange feeling in my lower abdomen the day before. It’s not painful, I just feel the “presence” of the area, like it’s colder or warmer or something. But I did forget that on very bad times my hands are also very shaky and the rest of me is weak as well, and I don’t dare eat anything that day because it might not end well. But only for the first day or two. I think one of my favorite PMS symptoms is when we get a boost of progesterone that turns us into bloodhounds, I know sometimes my sense of smell is very keen a few days ahead of time, and one woman said she could tell a full week before anybody else if milk was going bad. I have heard of allistic women having the same things, so I wonder how more common it is for us to have these sensations than normal women due to our hypersensitivities?
(Let me preface this by saying that I’m trans and don’t identify as female or male, just so no one assumes I’m a woman)
That’s interesting that you find progesterone heightens your senses! I just started depo-provera (progesterone-based birth control) yesterday, and it’s REALLY messing with me. Everything is really intense. Even if I feel calm I’m somehow INTENSELY calm, which I realize doesn’t make much sense. I feel like I’m hyperfocusing on whatever I turn my attention to. I feel like Sherlock Holmes when “the working fit” is upon him (as Watson describes it). So, very much like a bloodhound. It’s very strange and I don’t know how to deal with it.
That sounds really annoying. I hope your doctor lets you try something else if you body is unable to adjust and bring itself back into balance.
I’d love to do a gender study on Aspies someday. I identify VERY strongly with “tomboy” (and a little bit further, but I left it at “tomboy” for the sake of peace around others) and I hear a lot of Aspies are either androgynous or trans. I won’t ever have all the tools for it because I’d also be curious how natural hormones come into play, but a written survey would be enough for those who want to share personal preferences and beliefs. Heh, knowing our luck, the only reason half of us are called tomboys is because our sensory issues and practicality don’t appreciate that scratchy lace!
I get you there. I like it although its a bit weird.
Thanks for answering – I did read it right away but haven’t been writing much recently.
I’d forgotten the leg thing, but I did get that pre-pill. I know NT people who get it too. I wonder if differences in sensitivity do make a big difference to experience. I wouldn’t be surprised.
That’d just be our luck, wouldn’t it? If Cynthia writes her Menopause: Deluxe Edition book, one of us will have to write it’s prequel Suped-Up Cycles (and then giggle evilly at all the poor bikers who erroneously pick it up).
I was wondering if normal women get that leg thing too. Until I stumbled across this blog, I was the only one I knew of who had it instead of the usual crippling stomach pain and bloating.
😃
poor bikers ! lolx
“I have heard of allistic women having the same things, so I wonder how more common it is for us to have these sensations than normal women due to our hypersensitivities?”
Good question. My own sex speaking here, but in general many women I know, Aspie or not seem to be more sensitive during that time of the month. I have a background in shamanic studies and have attended sweat lodges in the past. One of the things that I was taught was that women were not to go into the lodges during their “moon time”. It could be because the sweat can be intense with the heat, wet steam or dry heat, and bleeding on top of that could make for fainting. I’ve also heard that this is a powerful time for women energetically – spiritually – and that energy can play a part in ceremonies. That time of the month could well amp things up for all women.
I’m sensitive and empathic anyway, and always have been so I’m not sure how much more my periods amped this up.
Right now I’m trying to locate some helpful information on being pregnant and having Aspie tendencies for one of our daughters. We just found out she is pregnant (our first grandchild) and I want to share whatever information I can. I can share my experiences but feel it would be good to have something outside of what mom says. So far there seems to be almost nothing out there. 😉
Oh, about pregnancy, you might try searching out older posts by Jeannie Davide Rivera. She was pregnant with her most recent son 2ish or so years ago and I know she wrote some posts about aspects of her experience.
I don’t doubt the possibility of fainting! Living here in Alabama during August has made me a firm believer of that. Intense humid heat and “moon time” don’t always mix well.
Congrats on the first grandbaby! I don’t know if it’s an Aspie thing or a people-are-different thing, but I didn’t get morning sickness. I sneezed a lot and generally had a very ticklish nose with frequent nose bleeds. I made a lot of “I am not from earth, I am from Bajor” jokes. I hope for her sake, she’s also Bajoran. Nasal issues were pretty easy to deal with, especially in comparison to most stomach issues I heard other women tell of.
Made me giggle! Thanks, I needed that! I’ve said they (Bajoran’s???) dropped me off here when I was little and I am not from here!!!
For me it was increased sensitivites to my body and foods I ate. Different with each pregnancy, but with the girls I had intense heartburn. I think I felt them kicking pretty early too, and with my youngest the heat (pregnant in summer in Illinois) was the worst. Any kind of sweet foods sent me over the edge, plain waffles, no syrup, nothing sweet. Contractions through most of the pregnancy.
The mom in me is concerned for our daughter, probably needlessly. I was diagnosed last Thursday and we wanted to wait to tell the kids when we see everyone at Christmas, in person. I don’t feel like this should be a phone conversation, it has effected so much of our lives. We discussed this with my therapist (diagnosing doc) and that seemed like a good plan. Now I’m having second thoughts. She is just into 2nd trimester and I wondering if I should tell her sooner because there might be something she needs to know about being pregnant and having an Aspie mom. I want the best for her and the baby. I can see tendencies in her for being on the spectrum too and I want to give her as much information as possible. It’s just two weeks away then she will know buttttt . . . this is the hard part of this (being an Aspie) for me. It’s one thing for me to have slogged through it, it’s another to see my kids dealing with it.
Bajorans are a race on Star Trek, particularly featured on Deep Space Nine. They have bumpy noses. =)
Eek, heartburn, that was definitely on the complaint list by a LOT of women. Along with summer pregnancies in general, I agree. There’s something to be said for planned parenting if you’re fortunate enough to aim your bigger months to be during winter!
Two weeks does seem a minor time to wait. I can’t argue against phone conversations either, I conducted nearly all of my exploring and possibility stage with my mom on the phone while she drove home from work. It always depends on what’s best for you and your family. How about a lunch date before Christmas?
Ahhh, Bajorans . . . I’ve got some catching up to do 😉 I’m an original show fan and Next Generation but fell off after that. Though I have loved the two newest movies that have come out in recent years.
Two weeks is a minor amount of time in the larger picture. I’ve thought about hopping the train or bus to go see her. She lives 6 and half hours away drive time.
Driving over distance is not my favorite thing to do and with an infrequent seizure here and there (diagnosed with Epilepsy July 2013) I’d rather not drive.
Thanks for the reassurance and support. Much appreciated! 🙂
Any time! =)
And I don’t blame you on the dilemma to see her early. 6+ hours is rough enough without epilepsy!
I totally relate with you here. I often thought my middle daughter had my aspieness but it turns out it was my youngest daughter that had it ! Talk about not seeing the wood for the trees. We have been through two painful years coming to terms with her fibromyalgia and am now waiting for the results of her apsie diagnosis. She herself asked for it. In order to give my daughter the cushion she needs in life, we have been through the horrid process of applying for Personal Independence Payment. Her appeal court day was last week. I was in tears the most of it. Horrific to put a teenager through the process of having to talk about her suicidal thoughts, cutting and anorexia to a panel of strangers. Something that would ordinarily take years of therapy to come to terms with but we’re through. My daughter is like a super strong fiery fairy now. Really coping well and making certain she is gentle with herself yet capable of achieving so many of her dreams in her own way. She even went out partying with her (sisters) friends the other night from a chair in the middle of the dance floor ! i am so proud and so relieved that she has all the support she needs . That same support that I didnt get til I was past 50.
Living through the menopause as my daughter lives through her adolescence AND we are both on the spectrum has been incredibly challenging and we done it !!!!!
Thanks, I did find one page of her posts and about 14 comments. Found a book written by and for medical professionals that seems interesting, but it does read very much like a book of medical jargon and does not get to the real stuff the those of us living with Aspies know.
“Nursing of Autism Spectrum Disorder: Evidence-Based Integrated Care across the Lifespan Paperback – April 9, 2012
by Ellen Giarelli EdD RN CRNP (Editor), Marcia Gardner PhD RN CRNP CPN (Editor)”
There is a chapter on pregnancy and you can read a lot of it via the “peek” function on Amazon.
A good combo of the two parts – helpful medical and real people living it would be great. I like the ZOOM magazine which seems to be doing that.
I’m continuing to look this afternoon to see what else I can find.
It might be like many things Aspie – those of us living it will be the ones writing it.
If I were fully public with my diagnosis I would do a Survey Monkey or something similar on these pregnancy questions. Once I have shared with my kids (gone public) I will be using tools like this and sharing for sure. It’s clear there is a need for this information.
Nelliepmoore,
I wish you all the best in regards to sharing your Asperger’s info with your daughter, & congratulations on the soon-arrival of a little grandchild.
On your ‘going public’ with your daughter;
When one shares news there is, by logical deduction, some expectation of response from the person you are telling … anything – rejection, anger, acceptance, interest, even laughter over realizations, but SOME kind of response.
I just want to say, be prepared for maybe . . . no repsonse.
This is what I recieved from my 33 year old. . . for clarity, our ‘closeness’ raport is as follows (bc she lives in NYC)
We text about work, friends, outings, thru the week, we talk on phone for about an hour about 2 times month, she’s flown me to NYC twice, once just to be with her for an out-patient procedure, she comes home 1-2 times year for holidays. I raised her without help from her father, so she respects me for that, & she thinks I’m really talented. I think she is a smart, beautiful, amazing young woman…I feel we are fairly close. I’ve also apologized years ago to both my daughters for choosing poor fathers which resulted in difficult financial & stressful situations for us throughout their childhoods.
Since my last visit to NYC, over 9 months ago, I have sent her links to the musingsofanaspie site explaining a little about Asperger’s, emails (to just her) of a few personal things I’ve written about myself (NOT crazy long), which included apologies for being unaffectionate, discionnected, & impatient.
And I mentioned Asperger’s a couple of times on the phone, and waited to see if she would make some comment – nothing.
All these mentions were stretched out over the 9 months (not all at one time)
My 19 year old, still at home, also will not discuss it, although she did listen to a list of traits and was kind of amazed at how descriptive the list was of me – and there have already been a few times where I was doing something that upset her or she thought was weird, and I said SEE!! And we actually had a good laugh. – but I dont really know why/how she could really laugh or seem to ‘get it’ if she is too busy to read about it, or discuss it with me.
It’s a little frustrating not knowing WHAT they really think.
There’s just no comment.
MAYBE they are so busy with their lives and going & doing, they simply do not have time to sit down and discuss WHY mom has always been SO different & weird & unnacceptable mostly. Like everyone else, they always just explain me as ‘creative-ARTistic-crazy’. If I were not an artist, I wonder what they wouldve said as their excuse for me??
So, I’m just SAYING … be prepared for this possibility of ‘no response’.
(Also, I commented to you on part 2 again bc your become more interesting each time I read your comments)
{:¬)
Thank you signlady.
It sounds like you have two really wonderful daughters and I applaud you for raising two sweet girls as a single parent! I’ve been married three times and been a single parent through two of those relationships. It can be challenging to say the least!
Relationships can be a challenging thing on the best of days, and in the Aspie world, even more so. I can see that now, in hindsight with the knowledge that I am an Aspie and it has helped me to be kinder and gentler with myself for the choices that I made that led to poor relationships.
It sounds like your sharing you are an Aspie with them is more recent? In the past 9 months to a year? It could be they are both still in the processing stage. Or maybe they have processed it and they don’t have any questions right now. Knowing that they have an open door policy to ask whenever they have questions could be one option.
I’m curious – and you don’t have to answer by any means – with past conversations you have had with them on matters that were important, news of some kind, how did they respond then? Was it similar to what you are experiencing now with your news that you are an Aspie? Maybe this is the general way that they process information. It helps sometimes to look back at the bigger picture.
I know for myself I’ve had to learn to do that because of my Aspie tendency to see things in black and white – no shades of gray, and just looking at the little details and I miss what was right in front of my face. What was there all along. Food for thought 🙂
For my own kids, I’m doing my best to keep an open mind and heart as I share this with them and do my best to be present for whatever their reaction is. My kids are pretty big supporters for me and what is important to me, and I for them. I’m not always aware of how much they love me and care for me, but it does come out and warms my heart and makes me smile and sometimes become teary eyed.
I had that experience a couple of months back when someone that I thought was a friend decided I was not what she thought a friend was supposed to be (ongoing thing for me with friendships – I understand it now as part of being an Aspie) and when I mentioned to my youngest daughter that we were no longer friends she became angry, and then before I knew it I had gotten a text from my oldest daughter telling me I did not need friends like her. Unbeknownst to me my youngest had called my oldest who lives in another state and told her. They were both pretty angry with this person because they could sense I was hurt and I told them to let it go, it was okay. There are other instances like this that I can think of over the years where they are my cheering section and I theirs. It’s not their job to run interference for me, protect me, watch over me, or be little parents, It’s my job, my life to do the best I can with who I am and what I have, and having said that, it was very sweet that they wanted to shield me from this person.
With this disclosure I want to be fully there for them as their mom, because I know this has effected them throughout their lives and will continue to do so. I’m going in with whatever helpful information I can share, heartfelt and deep apologies for anything they’ve had to experience because I’ve struggled with being an Aspie and not known it until a week ago today, and going forward will support and champion them in whatever way that I can. I know in my heart there is so much more to being an Aspie than the hard stuff. The challenging things. It’s what has brought me to this point in my life. I always knew there was more, and that’s how I take each next step. 🙂
signlady, I’ve been thinking about your post and my response to you since I made it this morning and I wanted to add something. Sometimes I don’t always get across what I am trying to say, or it seems to get lost in my translation from my brain to my fingers.
I want to thank you for your care and concern that I not pin my hopes on our kids responding in the way that I would like them too, or be disappointed if they respond differently, or not at all. It could happen.
It sounds like it’s really hard not to hear some kind of response from your kids, something, anything, would be a start. I hope that some kind of a conversation is able to begin between your and your daughters, whatever that looks like that feels good to everyone.
Thank you too for your sweet wishes for our future grandbaby! Late spring will be here before we know it and we can’t wait to meet him or her.
Thanks for kinds words too about being interesting. I’m at a loss for words and a bit flustered. I just try to be me. I think we are all pretty interesting and absolutely amazing. 🙂
It is hard when people don’t respond the way we’d hope because this is a big deal for us and I guess we expect it to matter to others too when they’re part of our life. But I think that some people don’t realise its a big deal, or are too busy with their own stuff, or don’t know what to say (so opt for saying nothing!) or think they’re getting it right when they’re so not. But we can’t change them. Sometimes, with time, they’ll change themselves anyway.
I told a friend of mine in an email a week ago – just a quick update on what I’d been up to in response to his asking. Asked him how his birthday had been, what he was up to etc. And added my diagnosis on the end. He’s not bothered to reply. And I admit that it hurts because it feels like a rejection of me. But I’m telling myself that he’s probably really busy with his business, and there may well be other things going on with him (since he didn’t open the e-birthday card I sent him until 3 or 4 days after his birthday) that I don’t know about. And at the end of the day it’s my diagnosis and important to me. It doesn’t need to be important to anyone else (though it would be nice!). Life trundles on regardless and maybe at some point he’ll acknowledge it, maybe not. But I’ll still be an Aspie.
Having said that I do hope that everyone who posts on here gets the support and encouragement they need from others. Life can be hard work sometimes and if you have a support network it would be nice to think it works.
And yes, we’re all interesting and amazing! I find myself very interesting even when no-one else does 🙂 They can’t see inside my head and that’s where all the fun is happening!
I get that so much
Wow. I loved Barbie clothing and I played with it exactly the same way. This is mind-blowing.
Thanx.
I like that ‘they can’t see inside my head & thats where all.the fun is happening’
lol
I think we’re all extremely interesting and amazing.
btw I played with everything that way too … I could pick up a handful of rocks and organize by shape-size-colour to this day … lol
I’m sort of afraid the reason for no response at all is … somehow they might feel I’m trying to make an ‘excuse’ for being different.
They ‘accept me’ (have come to terms) (my strange ways) with THEIR diagnosis – (typically the art-thing) Most of me is unacceptable and they still reprimand/ignore/question, just a little less than before . . .
I truly dont intend to use Aspergers as an ‘excuse’ at all for anything.
Its a not-so-mere relief to know I AM NOT CRAZY.
I AM different – I DO think different… and it’s ok.
In some way, its probabl
y a good thing that I found this info now, instead of like age 20 or so – I might HAVE leaned on it to excuse certain things – instead, I just kept striving to fit and have enjoyed less reprimands over the years. Or maybe my kids would have been more accepting over the years …
who knows.
I ‘get me’ now.
They will eventually get me too.
Reblogged this on TRANS RESEARCH and commented:
The final part of a great series on gender and autism from the point of view of a woman with autism.
Sort of a late commenter here, but I’ve been voraciously reading posts and comments after discovering your site earlier today, and just have to pipe in with THANK YOU. Thank all of you for sharing your experiences so candidly.
I’m a self-diagnoser as of Feb 2012, and it was such a huge relief.
I also wanted to say that I actually have the same language issues, and have for a long time. The X’s that you have a hard time writing out, I have always had that issue with W’s. I have to trace the outline in the air above the paper 4-5 times before I can write it on the paper, and even then sometimes it just doesn’t come out right! I’m also 33… so it’s not due to menopause, which makes me wonder (ok, worry) just how extreme menopause will be, lol.
Anywho, thank you all, again, for being here and sharing your thoughts and experiences!
Any suggestions on dealing with meltdowns? Had my first one during menopause, a couple intermittently, and several in the past year (I don’t think they are menopause-related as I’m 59 but who knows?). The meltdowns scare me and they scare my husband–I could do serious domestic assault when these things happen, and that just terrifies me. I don’t know who I am when they happen and different triggers set them off.
If you can feel them coming on like a sneeze, you could recluse to a safe room by yourself until it passes. But if yours are sneaky, I can only offer a digi-hug.
Brillaint article and comments. Just want to add a couple of notes. This week has been Menopause week on the Morning Britain BBC chat show. I have watched in complete amazement. I sincerely believe that these NT women are experiencing what we aspies experience much of the time. Obviously its amplified with us. However we have coping mechanisms so its fine. I just LOVED listening to their stories. BTW I am coming back out the other side of menopause and my memory etc is returning. I was diagnosed with fibromyalgia throughout. These symptoms are abating. I have used the time to completely overhaul myself. How I eat, how I work, my environment, who I hang around with and most importantly my attitude towards myself. I am very gentle with myself now. I do incredibly brave things but I do them very conscientiously. Mindfully. Love to you all X
This is hilarious. I thought I was going mad when I went through menopause. My language became very bizarre. At one point my daughter suggested a dictionary of mums odd words. I almost developed a type of short hand by combining several words together and producing one totally new one…..listener beware!
A couple of times I would just use completely the wrong word. One example, in a supermarket my daughter approached me with a cast iron trivet and asked if we could use it to rest hot dishes on at dinner time. I replied “we dont have a big enough baby”. It was meant to have been l
“we don’t have a big enough table”. After registering her puzzled look and realising what I’d just said I proceeded to laugh uncontrollably for the next 10 minutes or so. Needless to say my daughter walked off and left me to it.
Another time we were walking along and she was bugging me so I said very authoritatively “ if you don’t stop it I’ll count”. “Oooh I’m so terrified” was her reply. In my head I was considering ‘call the police’ or ‘shout’.
There are too many examples to recount but you get the idea.
I was pleased to read that this was/is not peculiar to me.
I only found your writings now, after being diagnosed with ASD this week at the age of 62. There are three things that had me laughing out loud with recognition:
* Target shooting (I did it with handguns and rifles);
* Martial arts (Graded red belt in Taekwondo);
* Clothing (all soft cotton or merino wool, nothing ‘girlie’).
There were many other similarities. I guess I’m beginning to find my tribe. ❤