Okay, I’m pretty sure I know what you’re thinking: Autism and Menopause! Where’s the fun in that?!
But bear with me… If you’re a geeky-nerdy type like me, learning all about the inner workings of one of the most misunderstood situations on the planet and figuring out how to work effectively with it to make your life that much better is an appealing prospect.
The thing is, you’re not alone.
Every seven seconds, one of America’s 76 million baby boomers turns 50.
Every day, about 5,000 American women enter menopause.
Until 2020, approximately 2 million women will reach menopause each year. Half of all post-menopausal women will be in Asia.
That’s a lot of us — and since I’m a woman, and I’ve gone through menopause myself (10 years “ahead of schedule”, thank heavens!) — I’ve got a few things to say about this.
Especially since it really affected — and was affected by — my autistic temperament.
It really, truly did. And if I’d know certain things ahead of time, I might have handled things very differently. And my experience might not have been so awful.
The thing that always amazes me about the social conversations we do / don’t have about menopause, is that it’s incredibly common and perfectly natural. And yet, it’s treated like some dread condition that needs to be either ignored completely or eradicated with some combination of meds. Hm. Sounds a bit like autism, to me, actually. So, we autistic women get a “two-for-one deal” on our situation. We get double the excitement, but nowhere near twice the support.
We’re lucky if we get any support at all.
I know I didn’t. At least, not much. My partner went through menopause before me, so I had an up-close-and-personal chance to see how it affects others. Panic attacks. Wild mood swings. Intense anxiety. Explosions! Not much to look forward to, right? But I also have to consider that her situation was unique — she was going through major changes around her parents passing away, family dramas, work problems, and so forth. I didn’t have those, when I was going through the Change. I had my own set of issues — Autism being front-and-center.
So, for me, the experience was different. But equally intense.
Oh, if I’d known then what I know now… I can honestly and truly say that I would have handled things very differently.
What’s done is done, and I can’t change my own situation. But I can certainly speak up about my experience, in hopes of other Autistic women benefiting from my experience. Like Autism, every woman’s experience of menopause is different. That goes without saying. But the qualities of our experiences (outside the specific details) can be very similar, and that’s where I want to focus.
Because heaven knows we need support. It’s challenging enough dealing with the world when you’re Autistic or menopausal. But when you’re both… woo hoo!
Oddly (or perhaps predictably) the mainstream hasn’t devoted a whole lot of resources to exploring this intersection of issues. Older women — especially Autistic women — don’t seem to be high on anybody’s list of priorities. Much more interesting to study Autistic children, teenage boys, or grown men. There’s more money in that, quite frankly. But where the mainstream fails, we can step up and help ourselves. There’s this thing called the internet, and it’s chock full of all kinds of goodies that we can mix-n-match and augment ourselves, to serve our own needs.
‘Cause who knows our needs better than we? Not a soul.
So, here goes… I’ll be posting more in the coming days and weeks. I’ll also be publishing additional tools and information over at Auptima Press, especially in conjunction with menopause support resources we’re developing over there.
I can either curse the darkness surrounding women + Autism + menopause… or I can light a candle. I’d much rather do something about it.
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Well, okay. They ran the tests, they did the analysis, they made their findings. The paper says:
The results showed that children’s ToM was significantly associated with their pretend play in initiating play actions, object substitutions, property attribution, and pretending an imaginary object were present. However, the correlation coefficients failed to show a significant relationship between children’s ToM and their playfulness.
So, kids who did poorly on ToM didn’t “perform” pretend play very well.
From the paper (bold emphasis is mine, and I’ve taken out the citations):
Play, the main occupation of children, both reflects and improves the development of their physical, cognitive, and social skills. Play is the dynamic interaction between the individual child and the child’s immediate environment, and it is influenced by sociocultural factors. The two essential manifestations of play are external performance and internal experience. The former is observable performance, which unfolds in play activities; the latter is playfulness, which is the key to determining whether an activity belongs to play or not. Therefore, it is important to view play as a whole construct involving both external performance and internal experience.
Issues with this paper begin right from the start. First off, the idea that play is “the main occupation of children” seems flawed to me. And it seems to completely misunderstand the purpose of “play”. Kids aren’t just horsing around. They’re developing their inner systems, their senses, their reflexes, their relationship with the world. In my opinion, learning and development is the main occupation of children, and if it comes across as play, then great. But learning/development is not secondary to play, as the authors seem to believe. Quite the contrary — play is secondary to learning and development.
The paragraph then takes a turn for the better (sigh of relief) when the authors talk about how play has a dual nature — external and internal. It’s not just about how it looks to outsiders; it’s also about how you experience it yourself (the level of playfulness). And yeah, we need to consider both the internal and external sides of play, in order to assess it fully.
Pretend play is a form of external performance and is defined as play composed of both conventional imaginative play and symbolic play. Conventional imaginative play is preliminary pretend play. It refers to perceiving objects (or conventional toys) as real or small copies of things, and using them in a functionally proper way outside of the typical context. Examples are pretending to feed a doll using a toy spoon, using an empty cup to pretend to drink, or rolling a toy car on the floor and making engine noises. Symbolic play is sophisticated pretend play. It refers to using objects (or unstructured toys) as something else, attributing properties, or pretending an absent object is present. Examples are using a banana as a telephone, pretending a piece of cloth is wet, or making an imagined cup with the hands and pretending to drink. Therefore, pretend play provides an opportunity for children to practice events occurring in their daily lives or social worlds. Through engagement in pretend play, children learn the differences between reality and imagination. Moreover, pretend play reflects and facilitates the development of emotions, language, cognition, social skills, social awareness, and perspective-taking ability.
I’m sure there’s plenty of research substantiating the above, but I think there are a lot of conceptual leaps that hew to a typical line. And those leaps may be blinding the researchers to additional considerations.
Why is it so essential that children turn something into something it’s not, to show sophistication? Why is it assumed that children who substitute one thing for another are developing normally? Seems odd to me. Why wouldn’t they wonder if something was amiss with those kids, if they clearly can’t tell that what they’re holding is in fact not a telephone, but they keep trying to use it as one? And how is it heart-warming, for a child to not understand that their doll is inanimate, that it’s incapable of eating and drinking, so it’s pointless to try to feed it or give it a bottle? Maybe that’s standard-issue non-autistic childhood behavior, but it’s not the only kind of human behavior that bears fruit.
The bias becomes quickly clear. Pretend play appears to be the one and only precursor to normal development. So, one could say that if it’s absent, it’s logical to expect that “emotions, language, cognition, social skills, social awareness, and perspective-taking ability” would all be ultimately impaired. Ugh.
Pretend play deficit appears to be a clinical feature of children with ASD and has long been a focus of the study of child development. Previous studies have found that children with ASD are unable to understand the pretend actions in play. Wing, Gould, Yeates, and Brierly (1977) conducted the first research that directly examined pretend play in children with ASD and children with intellectual disability and found that the majority of children with no observable pretend play or those with stereotyped, copying pretend play behaviours were children with autistic disorder. Several studies have also found that pretend play is apparently less frequent in children with ASD, and that their play behaviours lack symbolism, creativity, and complexity. Rutherford et al. conducted a longitudinal study that measured children’s pretend play in a free play condition and a structured condition with external instructions. Their results showed that children with ASD found it significantly more difficult than typically developing children to perform pretend play in both conditions and that spontaneous pretend play was more impaired. Furthermore, in addition to difficulties in performing pretend play, children with ASD have impaired comprehension of pretend play as well. In summary, research has shown that children with ASD are unable to understand the pretend actions in play. Children with ASD have decreased frequency and complexity when performing pretend play, and the difficulties can present spontaneously or appear with external facilitations.
Oh, my. That’s chock full of bias, pathologizing, and outright cluelessness about what’s really going on beneath the surface of autistic play. It’s so full of … “incomplete understanding”… I’m not sure where to start.
There’s the deficit model approach. Talking about our differences as impairments. Citing research from 1977 (for heaven’s sake!), and not apparently asking any #ActuallyAutistic folks about why we played they way we did, when we were younger. Trust me, a lot of us remember. And we could shed a truckload of light and insight on this question of “Why do autistic kids play the way they do?”
I take issue with their assumption that autistic kids don’t understand pretend actions in play. What if — just what if — we actually did understand, but categorically rejected it, because we needed to play in a very different way? What if we’re just more interested in learning how the real world actually works, rather than fooling around with playthings that aren’t the real thing? There seems to be an assumption that children aren’t capable of that kind of reasoning, when we’re quite young.
But I remember clearly, so many times when I was young, being offered dolls and toys and other objects that were supposed to be played with a certain way, but consciously choosing not to interact with them the way I was expected. Because I wanted to find out how they worked. I wanted to see how they were put together. I didn’t play with the pretend vacuum cleaner my aunt gave me one Christmas. I took it apart and played with the different pieces, to see how they operated, how they felt, how they took up space. I had no interest in any dolls other than one that looked exactly like a real baby and had a body made of fleshlike foam. I didn’t think of that doll as my child, though. I thought of it as a friend. Because clearly, I couldn’t have a child of my own. I was too young. I was closer in “age” to that baby, than I was to my mother. So, you do the math. It made no logical sense for me to pretend I was that “baby’s” mother.
So, when all these adults are sitting on the floor, trying to get autistic kids to do pretend play like the “normal” kids, they might ask themselves if it makes any logical sense for those kids to do what they’re asking them to do. And it might also help if they tossed in a bit of reality along with the pretend. I just don’t get why children are expected to concoct their own version of what’s real and what’s not, when the real, physical, tangible world is right there in front of them, just waiting to teach them about all the laws of physics.
What the paper clearly misses, is the possibility that rather than being a sign of impairment, autistic kids’ modes of play are simply a sign of difference. Where non-autistic kids may pretend more, say, using a banana as a telephone or pretending that a doll is a real baby or imagining that a toy car is a real vehicle that makes real sounds, autistic kids might — just might — have more of an interest in non-pretend (or real) play.
What if autistic kids (who were shown in the study to be playful just like the non-autistic kids) simply have a different mode of play which emphasizes reality, which interacts with things as they are, rather than turning them into something else?
And what if that ability to actually play with the real properties of objects were essential to our development in learning to navigate the world around us and interact with our environments?
Looking even deeper, what if the researchers factored in sensory processing issues and rather than pathologizing their play styles, they realized that they actually served a purpose. To whit:
In this study, it was observed that children with ASD who had poor adaptation to change and more unique use of objects would exhibit play behaviours that were less changeable and lacked narrative. For example, the children might keep rolling the toy truck to watch the rotation of the wheels without any play purpose, and the children would also show resistance when asked to play with other objects or when the tester modelled the play actions.
Play, as many of us autistic folks know, can be “less changeable” for a whole host of reasons.
First, the situation might be overwhelming for the kid, which prompts them to stim, or find some repetitive motion that soothes their jangled nerves. Also, certain kinds of play might lead to a “flow state” which is blissfully consistent. Or the kid rolling the truck might be observing the rotation, seeing how it changes, based on the surface, sensing the vibrations of it, basically absorbing massive amounts of data about that seemingly simple scenario — all of which is invisible to the adult. What’s more, that adult might have had a childhood rich with pretend play, which got them in the habit of making stuff up in their mind that seemed to correlate with reality, but which was just the product of their undirected, uninformed imagination.
And if an adult comes along and interrupts your flow state, disrupts your experiment, insisting that you do something different that isn’t contextually appropriate, how is that supposed to affect an autistic kid? It’s annoying. It can be hurtful. Why should we accommodate their non-contextual request to change what we’re perfectly fine with?
However, the results showed that ToM was not a significant predictor of children’s playfulness, possibly because of the small sample size. In addition, the results showed that autistic behaviour was the most significant predictor of children’s playfulness. It suggested that children with more autistic behaviours would look less joyful during play. As autistic behaviour encompasses the characteristics of ASD, the results are congruent with those of previous studies demonstrating that children’s playfulness is related to individual characteristics, such as age, sex, and other personality attributes.
So, stop with the pathologizing, already. And never mind the ToM stuff, period. I find it very telling that the researchers felt the need to say autistic kids “look less joyful during play”. How would they know what joyful looks like? Trust me, I can be ecstatic on the inside, and people around me think I’m pissed off. Seems the impairments of social detection aren’t only autistic.
After reading through this paper, I have to wonder, what if so-called pretend play were actually a sign of pathology, indicating that non-autistic children are prone to make up things in their minds which simply aren’t true… and if left unchecked, that can ultimately develop into full-blown inability to deal with reality as it is. What if children who were skilled at pretend play eventually grow into adults who surround themselves with invented falsehoods which confirm their biases and are never challenged, because they’re seen as “normal” behavior? Given the amount of autism research like this paper, it would appear that too many pretend-play experts have been allowed to persist in their childhood habits of making sh*t up, and it’s now affecting their adult work.
Hmmmm… I think someone should do some research on that. Now that would be a paper I’d like to read.
I can understand why some thinkers are recluses. Heck, I’ve been a recluse, myself. Blogging is one of the few concessions I’ll make to being “social” about my work. Social media, to some extent, as well. But I’m not a big fan of running around, telling everyone about my work, what I’ve been doing, etc. Something about social interactions really sucks the life out of my thought process, especially when I’m working on an idea. And when the idea becomes fully formed — or formed enough to show up on the printed page after a bunch of rounds of edits — I’ve often moved on to the next Big Idea… and I’m thinking about that.
But of course, everybody wants to talk about that old idea that’s in my proverbial rear-view mirror. Stuff that’s new to them is “old hat” to me, and I can’t be bothered thinking about it, anymore.
I could never be in a band for that exact reason. Having to play the same songs, over and over — especially the songs that everybody else loves, because they’re familiar and they make them feel a certain special way. Ugh. How horrible. I could never do it. Same thing with ideas and books and whatnot. I don’t want to hang around chewing on the food for thought I masticated and swallowed days, weeks, months, and years ago. I’ve moved on.
So, I really do make a terrible 21st Century author. Writing and publishing have turned into such a promotion-intensive activity, over the past 40 years, which is a shame for writers like me. I’m just not all that keen on self-promotion. Plus, I really hate talking to other people about my work. It’s an internal process. Talking screws it up for me and messes up my thought process. And part of me thinks, if other people have to talk endlessly about an idea, they must not really get it, so why am I bothering talking endlessly about it with them?
How I long for the days when people could read something, reason through it themselves without needing constant conversation and reinforcement, and then draw their own conclusions without tapping the purported “wisdom of the herd”.
Ugh. How I hate that expression — “wisdom of the herd” (it hisses through my imagination as if the character Bubble from ‘AbFab’ were saying it). That combination of words defies logic, to my mind.
Well, anyway, I’m just venting. What was it I wanted to say? Oh, yeah — how glad I am, I’m not traveling to see my uber-autistic parents.
Don’t get me wrong. I do love my folks, and I enjoy much of the times I share with them. But I can do without their cluelessness about what it’s like to live in the non-autistic world as an autistic person, how exhausting it is, how dangerous it is, how confounding and thwarting it can be. Their surroundings are as autistic as autistic can be — and they make sure it stays that way. Everyone in their immediate circle is either neurodivergent or knows they’re outnumbered by neurodivergent folks, so they defer to them.
Autistic is the Normal of their world. Neurotypical is pathological. Ha! So there. They’ve got their black-and-white thinking, their strict routines (for everything), their rigidity and dogma, their sensory issues, their hyperverbalism, their very, very autistic mannerisms that stand out sharply in the world outside their enclave but are the most natural thing in the world within their protected sphere of influence. They have all the supports they need to live successful lives in that context, and they can’t imagine anyone wanting or needing to live any other way.
My two biological siblings — both autists extraordinaire (tho’ they don’t know it) — have recreated our parents’ lives to an uncanny degree. It’s a little creepy. But by my family’s standards, they’re wildly successful, fulfilling all the requirements of A Good Life. Meanwhile, my adopted sister and I are outside that paradigm, and we’re struggling. She’s on disability and hasn’t been able to work or do much of anything other than manage her pain for a number of years. My activities are quite constrained by, well, being constantly exhausted by the demands of my everyday life. Exhaustion and an intense life with a lot of personal demands, isn’t a great recipe for exploring all of life’s glorious variety — including packing in all the activities my autistic family does, church involvement, volunteering, intense social activity, etc. In my parents’ view, that means my sister and I are failing — not that we’re dealing with a more challenging set of circumstances and are actually more functional in significant ways than our siblings who didn’t “fall far from the tree”.
The ironic thing is, I wouldn’t mind being able to stick closer to the ways of my upbringing. But autism-centric society doesn’t always work in my favor. And the rigidity and routines that make life sweet for the auties and Aspies of my parents’ type make life absolutely miserable for me. Their arrangements are great for people in one “quadrant” of the autism spectrum, but they make life a living hell for folks who occupy a different space. And they’re so damn’ intransigent about it. Come to think of it, it reminds me a lot of how brittle and abrasive Autistic Twitter can get, sometimes.
Shades of my upbringing… and the reasons I moved away.
So, where was I… Oh, yeah. Bitching about my parents. My whole family, actually. Vent, vent, vent.
But really, venting is only part of what I want to do, here. I’m off work for the next week and a half, which is bliss. I will actually have time to do all the things that have had to wait, thanks to my exhaustion and general overwhelm. Glorious. How delightful. I’ll be able to clean out my study. I think I’ll do that right now. I’ll have time to connect my new computer (I got a second-hand $3,000 machine for $304, which delights me). I’ll have time to lie down and nap whenever I danged well like.
And no travel to family. Not a bit. None of the stress and strain of highways with holiday-addled drivers. No sleeping in strange beds and dealing with strange routines. No social overwhelm. No hugs and sudden contact from hyposensitive, sensory-seeking family members. No foods that make me ill. No noise, no scents, no sensory assaults. No causes for meltdown/shutdown. And no interpersonal drama, other than the occasional heated discussion with my partner about something we both care deeply about.
So, why wreck it with ruminating on my disconnects with my family? They’re autistic. I’m autistic. We love each other and hate certain things about each other. And of course, we’re all 100% correct in our assessments 😉 Ha! Such is life in an autistic family.
Spring is coming, eventually. I’ll see them then.
For now, it’s all about making sure I’m well cared-for in my own well-cared-for space.
It’s pretty amazing, actually. I generally work 7 days a week at things other people need me to do. I don’t usually mind it, but it’s a glorious luxury to be able to take some time to listen to music, read, research, and discover new writers I never knew about before.
My latest discovery is Randolph Bourne, a radical thinker of the early 1900s (he died at the age of 32), who had a fair amount to say about war, society, and so forth. I don’t know enough about him, just yet, to really say much… other than he’s my latest discovery. And since he came from a town in New Jersey I used to live near, there’s a little bit of a connection I feel — if it’s possible to connect with a complete stranger who’s long dead, who hailed from a part of the world I tend to associate with some very challenging times.
I’m trying to not drink any more coffee. As much as I’d love to, it gives me a headache if I drink too much…. Water, though! I’ll drink water. That’ll be good.
I really do enjoy lazy Saturdays like today. It gives me time to unwind and just think. My day-job is way too frenetic, with far too much activity and – God help me – so much at stake!!! – it does get tiresome, I have to say. All that excitement… And for good reason. I do work in a situation that calls for plenty of vigilance and hyper-diligence. It’s just part of it.
Still and all, I do relish the times when I’m not in the thick of that.
Reading and exploring… following links at websites that uncover whole essays preserved for the duration of the website’s life… reading the words of someone I actually agree with… taking a break from the churn-and-burn atmosphere of the still relatively freshly minted 21st Century… reading the words of someone who knew how to spell, how to punctuate, how to put words together without autosuggest or autocorrect or auto-punctuate. What a pleasure. And most of all, to read the words of someone not propelled ceaselessly forward by the relentless fight-flight frenzy of the digitally driven world.
As time goes by, as I realize more and more just how much the digital world (and electronically delivered media in general) have fried my autonomic nervous system, and the ANSes of countless other people around me… as I witness increasingly with each passing day, what harm that does to the very existence of complex, higher reasoning… as I find myself unable to either listen or respond to the hue and cry of the wrong-doers and the wronged, as each side is so profoundly limited by the rightness — the righteousness — of their respective positions, which refuses to budge an inch, a centimeter, a millimeter, in response to perceived “challenges”…
The whole thing just makes me tired. It has the same effect on me as a gall bladder attack — it’s exhausting in ways that are hidden but very present, which come upon me suddenly in a rush of illness that tells me in general that I’ve not taken good enough care of myself, but offers no immediate relief, only the gradual, eventual re-gaining of healthy ground, so I can just go about my regular business without the constant nag of pain and self-imposed suffering.
I do it to myself with my media exposure, as well as my lapses in diet… I do it to myself by getting sucked into outrage and disgust and frustration, like so much greasy food on a slipper plate. I invite this pain and suffering on myself. In the steady progression of my ill-considered, ill-managed choices, do it to myself.
So, today I’m undoing it.
Yeah, I’ve spent a bit of time on Twitter, poking around, here and there.
And while I got more than my daily dose of human folly, I also found a reference to Randolph Bourne, which has brought me plenty of joy, just in the last few hours. I’m going to marinate in that some more. Print out some pieces. And read the words of other writers who worked prior to our digital age. Simone Weil. The Stoics. Folks who actually put some extended thought into their work and based their words on consideration, rather than knee-jerk reaction.
Folks who invite me to do the same.
What do I care about today? Peace. Of mind. Of body. Of life. Just some peace. And the cultivation of conditions that foster it.
I may go out for a walk in a bit. Or I may work on my book. That remains to be seen. I need to do some work in my front yard… but it may rain, so maybe not.
It’s Thursday. I’m tired. No, more than that. I’m exhausted. Dragging. Dulled down in a very uncomfortable way for me. I hate this. But there’s no escaping it, so I might as well make the best of it.
It’s going to take a while for me to recover from my business trip last week, And I’m not happy about it. Being this tired makes it hard for me to stick with my routine, but of course I need to do that. So I modify it somewhat. I shorten my work out. I spend less time on things like preparing and eating my breakfast. I set lower expectations for myself at work.
Work has been extremely demanding for me, lately, and I’m not happy about that. I keep falling behind in things, and that makes me incredibly uncomfortable. But then I realize that everyone is falling behind in their work, so that’s some small comfort. Even if I have a really hard time with it, I’m surrounded by people who still support me, who struggle with the same sorts of issues, and who aren’t about to chase me out the door because of it.
All in all, I really do like my job a lot. It’s just exhausting. I’m wiped out by Wednesday afternoon, and then I’m pretty much of a zombie for the last two days of the week. That’s where I am today. Fortunately, I can work from home tomorrow, and I can take a nap in the afternoon, which will be a help.
I don’t mind the challenge of my job. I welcome it. I could just do without the exhaustion. I think I’d enjoy it so much more if I could just stay rested.
The one thing that would change everything for the better, is being able to take a nap mid-day. If I could only lie down for an hour, each afternoon, I would be so much more productive. And I need to do that every single day, so I don’t fall behind.
I have talked to people about my trouble sleeping, and they have all encouraged me – even urgedme in the strongest of terms – to not disrupt my sleep-wake cycles with naps, because supposedly that will throw off my circadian rhythm. But these people clearly have no idea how exhausted I am by the end of the day, and they don’t know what it’s like to have that cumulative effect of one exhausting day after another.
I’ve been thinking a fair amount, lately, about how I engage with the world. There of been a lot of conversations on Twitter, lately, about eye contact – and I shared a paper, recently, that pretty much says what we already know, albeit in scientific terms and with data to back it up. Also, people are talking about memory, and why we as autistic people remember things differently. My head is spinning with all these great ideas, and stuff is “gelling” in my head… just in chunky form. I’m sure there’s a common theme there… somewhere…
My understanding of memory is that it is a complex thing which is made up of a number of different components. In order to have a memory, first you have to create it. Certain parts of your brain have to be engaged to really make it salient – to make it stick. And then, you need to be able to retrieve it.
That might be why so much of my prior life is a blank. I’m otherwise engaged in the world around me, and I’m noticing things on a much more detailed level, than those big “meta” concepts and experiences.
I can’t speak for anybody else, but when I am in the thick of a situation that is innately challenging / hostile to my autistic character, I spend more brain and body cycles on navigating all of the sensory details and trying to sort through what it all means, rather than making specific memories about specific things. If somebody is talking to me about something I’m not particularly interested in, or I’m stuck doing something I don’t like, that also has an effect. I won’t necessarily invest the brainpower and really experiencing that fully enough to make any sort of enduring memory. Maybe it’s sticks, maybe it doesn’t, but there’s really no guarantee of anything.
And if someone is interacting with me or I’m experiencing life in a way that is completely overwhelming to me – someone is wearing too much perfume, the lights are too bright, the temperature is not hospitable, there’s a lot of background noise, someone feels the need to keep reaching out to touch me… or any number of other sensory inputs or intruding on my attention – there’s a slim chance that I will retain that in my memory banks. Detailed memory is probably not going to happen.
So, where does that leave me? I have huge gaps in my recollections about what went on in my life in the past days, months, and years. My family typically start conversations with me with a question “Do you remember…” and as often as not, my answer is, “No.”
I’m not sure anybody outside my head – except for the autistic folks who read this and my friends on Twitter – fully understands this phenomenon. I’m so busy parsing everything around me, that I can’t really engage fully with what’s in front of me.
Then again, I am engaged. I am involved. It might not be with the same things that everybody around me is engaged in, and I might not be making the same sorts of memories as the people around me, but I am engaged. Chances are, I am wrapped up in my own thoughts, parsing through data which I find a heck of a lot more compelling than what’s happening right in front of me, or I’m thinking about things in a completely different way than most people around me.
That’s really my strength – and when it works out – especially when I’m not exhausted. It’s a thing of beauty. I can live and interact in a world filled with people completely unlike me, and still bring my own unique perspective to the situations we are in. I can find profound joy and relief in my own particular interests, even while the rest of the world is operating in some parallel universe. They have their space, I have mine.
Somehow, I’ve figured out how to make peace with that — and make my differences work for me. I’ve adopted a persona, which I have refined over the course of decades, which works in social situations. I’ve developed a role – a performative mantle if you will – which secures a place for me in social situations. Neurotypical people seem to be comfortable with roles and performance of specific behaviors. So I’ve figured out how to do that in a way that is positive, constructive, and true to myself. Am I masking? Of course! Am I camouflaging? Of course! Everybody is, in the neurotypical world, and I think that’s something that autistic people tend to lose sight of – if we have sight of it at all, to begin with.
It’s a careful balance, of course. Balancing performance with actual essence, meeting the social requirements that will keep me out of trouble… along with being true to myself. Engaging with the world on my terms – albeit while making concessions to the larger whole. It’s not easy. And sometimes it’s not fun. And it’s exhausting. But there are enough rewards that it’s worth it for me.
I may be otherwise occupied while the rest of the world spins around me, but I am still engaged.
Being a girl or woman with autism is hard: it’s only in the past two to three years that many professionals have begun to recognise that the condition is not limited to boys and men. But what’s harder is to be a mother with autism – and harder than that, is to be a mother with autism, of children with autism.
Experts say that there is a hidden pool of mothers who have grown up with undiagnosed autism. These women often only recognise their own condition when researching their children’s symptoms.
Something really interesting happened to me earlier today. I was talking to a friend of mine, who in the past has refused to believe I’m on the autism spectrum. At the time he refused to believe, I was pretty hurt, and I considered ditching the friendship. But this friend and I had more things in common than not, and I realized I was able to talk to him about things that I can’t really discuss with anybody else. He’s a total brain geek, and he’s got some deep and broad interests and experiences with many things brain-related.
I don’t have direct access to a lot of people with his background. So, I decided to keep him around as a friend — but not (ever!) bring up autism with him. It was pretty easy to do, because we had so much else to discuss.
We were just talking earlier today about fMRI scans and the Default Mode Network(s) in our brains. I don’t yet fully understand DMN, but it sounds fascinating. And for some reason the topic of autism came up. He was telling me about how fMRI scans show a direct correlation between certain types of connectivity in the DMN – or lack thereof – and autism. He said — with a straight face and in all earnestness, that this contributes to theory of mind problems in autism.
Deep cleansing breath… Pause to settle my startle and fight-back response…
I have to say, I’m very proud of myself for not flipping out over it. This friendship is one I really value, so I simply, calmly googled “default mode network” autistic adults, and I quickly found a paper (Sex Differences in the Default Mode Network with Regard to Autism Spectrum Traits: A Resting State fMRI Study) that shows how differently men’s and women’s scans turn out to be. I mentioned this to my friend, and my friend was genuinely glad to learn about it. I guess in all his 40+ years of neuroscience he’d never heard about the differences between men and women on the spectrum. I also forwarded him a link to the paper – which was as recent as the end of 2015 – so he could read it. He actually seemed happy and grateful to hear about it and get more information.
I think sometimes that our conversation nearly 10 years ago about how I can’t possibly be autistic, has stuck in his mind. I also think at times, he has got to be on the spectrum, because he is so excruciatingly detailed about things, so one-track-mind about certain interests, and he actually has many of the same autistic tendencies that I do. But, because he’s almost 20 years older than me and he’s been practicing deep in the heart of mainstream neuroscience, mostly in a different area than autism, his conception of autism is very different from my own. And he may not even realize that he’s on the spectrum.
The funny thing is, I’ve been toying with the idea of broaching the subject of him being on the autism spectrum for a number of weeks, now. I don’t know if it will ever happen, but it’s interesting to think about. Being the person I am, I can’t help but imagine about 100 different scenarios that could occur, each of them branching off a different decision tree in the imagined conversation.
But even if that never happens, at least today there was an inroad I was able to make with regard to this subject. I really value his friendship and would love to be able to discuss autism with him, because we are like two geeky brain nerds, when we get started talking about things. And it would be so much fun to be able to just be as artistic as we want to be, without having some overshadowing misconception diluting the conversation and making some of our characteristics seem like something they’re not.
Anyway, who knows what will happen… I’m just glad I have this friend, and that we talk on a regular basis. That will suffice, for now.
Do you ever feel like you don’t quite fit in? Like everyone else knows ‘the rules’ of human relationships, except you? Of course you may wear your ‘otherness’ badge with pride and relish the sense that you’re just not like the rest, but it can also be a very lonely way to live.
I feel like everyone else is a PC and I’m a Mac – just ‘different’ rather than ‘less’ or ‘failing
Journalist and author Laura James says: “I always felt as if everybody else seemed to just ‘get it’ – whether it was friendship groups, relationships with boys or how to behave at mother and toddler groups once I became a mum. I always felt unsure of the unwritten rules. It’s had a major impact on my relationships and social interaction. When you get to your mid 40s and everything about you is weird you know something’s wrong”.
At 46, Laura was diagnosed with high functioning autism. “It’s completely controlled my life since early childhood – the way I mother my children and behave in my career and marriage. But it’s so difficult for others to see it”.
Basically Laura lives in fear. She’s always found that doing simple things that most of us would find merely slightly nerve-wracking or tiresome can be a source of abject terror. “Making small talk at a party makes me so fearful that I stay at home. I get so anxious about filling out forms that I’ve never applied for child benefit for any of my four children”.