When the #Autistic medical model has gone the way of the dinosaurs…

dialog between mother and autistic daughter explaining the old medical model of autism

Fantastic post from Luke Beardon.

HELLO MUMMY – A (FICTITIOUS) CONVERSATION FROM THE FUTURE

Girl: Hello Mummy.

Mother: Hello Darling.

Girl: Mummy, I want to ask you some questions.

Mother: Ok – fire away!

[Pause]
[Pause]

Girl: Fire away?

Mother: Sorry Darling, silly Mummy. I meant please do ask your questions.

Read the full (most excellent) post here.


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Let’s have some fun! #Autism and #Menopause :)

women walking along a lake in front of a sand dune balancing pots on their heads
Women walking along a lake in front of a sand dune balancing pots on their heads

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.

candle burning in the darkness

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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What if non-#autistic “pretend play” is pathological?

board game with pieces
I’ve been thinking a fair amount about so-called “theory of mind” (ToM), lately, and I keep coming across references to it. Take, for example, the recent paper “Theory of Mind Deficit Is Associated with Pretend Play Performance, but Not Playfulness, in Children with Autism Spectrum Disorder” They talk about how “pretend play” is impaired in autistic kids (oh, sorry – “children with Autism Spectrum Disorder”), and how “ToM significantly predicted pretend play variables”.

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.

We’re all autistic, we’re all family… what’s the problem?!

three figures with one close up

Ugh. My familial disillusionment strikes again. I had hoped so much to be able to connect with my parents, this holiday season. I won’t be traveling to them, so I’ve been hoping we could interact with each other in a mutually satisfying way. I’ve been cherishing the idea that the distance will relieve me of some of the existential angst that used to push me to suicidal ideation this time of year… every . single . year . until I was nearly 50.

Yeah, I know I’m being unrealistic. Everybody’s bothered by family stuff, almost without exception. I know very few people who don’t have issues with their parents, who don’t carry some sort of painful “baggage” about their relationship, who aren’t haunted by unaccountable ghosts that seem to embed themselves in our sinews and make themselves known like so much arthritis when the weather turns cold. And when you’re autistic, family stuff gets even more… interesting. I’m no exception.

So, I’m all spun up about sh*t. And what, pray tell, is it about?

This morning, my father finally responded about a piece of writing I’d sent to him a few weeks ago, to see what he thought of it. He’s seen my writing before, and he hasn’t always had favorable reactions. He’s misunderstood a lot of what I’ve written and said over the years, and he’s lectured me on all sorts of non-issues that he got all worked up about.

I chalk it up to his own Aspergers… that clinical tone he takes, the critical eye he turns to things… he seems to think he’s doing me a favor by telling me where I’ve gone wrong. He doesn’t actually discuss my overall ideas. He looks at specifics, homes in on the things that he thinks are flawed, and then he tells me in detail what those things are… usually from his own dogmatic point of view.

Yeah… thank you, Aspergers. That whole big-picture thing isn’t a strength of his. My mom isn’t much help, either. She also homes in on a narrow slice of something I’ve written, she takes it out of context, and then she gets upset. She’s much more emotional than he is, and she’s been so beaten down by the rampant sexism in her world, that she has a hard time articulating exactly what’s bothering her.

And then I have two of them all twisted up about my work, when all I really wanted to do was share it with them so we could discuss some of the ideas I’ve been thinking really hard about. It’s generally a really tough situation for everyone, and I hate it every time it happens.

Part of their issue is that I don’t have a college degree. Both of my parents have Masters degrees, and my father used to teach at the college level. I’ve got a number of PhD-level academics/researchers in my family — some of them considerably younger than I — and the whole formal education thing is very big in my family. I still get little insinuating lectures from my parents about how inexplicable it is, that I never got my degree. I attended university for four years. I accumulated the debt. I did my time. But no degree. That just rankles them to no end… probably in no small part because of their Aspergers.

What they can’t seem to get their heads around is that my “issues” were severe and cumulative in college… to the point where I had a serious drinking problem, I was in trouble with the law, I’d “acquired” a stalker, and I literally couldn’t complete my coursework in a timely manner, so completing the whole gauntlet just wasn’t possible. They’ve always felt it was my fault. I just didn’t do a good job of… anything. I’ve embarrassed them. And what right do I have to write anything that sounds like I know what I’m talking about, when I’m clearly such a loser?

So, when I’m presumptuous enough as to write something for others’ consumption (they don’t know about this blog), they get all up in arms. Because they think the things I write about require years and years of study at accredited universities, to qualify to speak about them. If I haven’t done the coursework, I can’t use my voice. I’m not qualified. I’m not vetted. I’m just some upstart making noise. And I’m making noise in ways that might embarrass them, if other people find out. I’m making noise that embarrasses them simply by right of me making that noise. It has no order for them. It has no sense. Because I haven’t ticked all the boxes that tell the world I’m allowed to say the things I say.

And for this very reason, I am incredibly grateful that I’m not traveling to see them for Christmas. We were going to try to travel down, but… nah. It’s winter. Officially. There’s snow on the ground and too much traffic on the roads. Better to stick close to home, and just settle in with my books.

My comfort.

 

On my terms.

In my own way.

That’s not “wrong” at all.

Not by a long shot.

Next up: Some time to sink into the Flow

abstract painting flow
Well, my duties have been discharged for the year, and now I’m free to do what I like with my time. Well, mostly free. I “clocked out” at 12:08 p.m., after answering a last-minute email from a colleague in Ireland. He was emailing me after his business hours, so I might as well be considerate. Then I turned on my email auto-reponder informing the world that I’ll be back in just under 2 weeks, and now I’m “free to move about the cabin”, as it were.

I love this time of year. I really do. I like the long nights. It feels warmly enveloping, even if it’s below freezing outside. I love the darkness and the short days. Sadly, the days will be lengthening after tomorrow. Oh, well… Maybe I’ll move to a Nordic country in my later years, so I can have a longer winter… Or not.

This year is an anomaly in my long career. Experts decry the low numbers of employment in the Autistic population, but it feels to me like I’ve been missing out. If only I were underemployed. Sheesh. 😉  I know, I know. I need to be careful what I ask for, but I’m seriously tired. I’ve been continuously employed since 1988 — nearly 30 years, now — and with just a few breaks in between — a week to regroup from a layoff in 1993, and another 10 days to move across the country in 1995 — I’ve been showing up to work religiously for three decades, now.

With just the all-too-short weekends to let me modestly recharge, till I had to go back at it on Monday mornings.

But this year is different. I’m now working for a company that has a free week off between Christmas and New Year’s each year. If that isn’t an antidote to all the corporate B.S., I don’t know what is. Plus, it’s free for everyone — it doesn’t tap into my vacation time or require a dock in pay. It’s just there to take. And everybody’s taking it.

Which means I’ll be free for nearly 2 weeks… and I can get into my Flow State. I can clean out my study and organize myself. Heck, I might even locate the copy of Flow that I bought a few months back. That would be nice. I could read it.

Or not.

I can do what I like. Think what I like. Read what I like. Lie down and nap whenever I like. Make the most of my time, doing and thinking things I typically don’t have the time to do or think.

I might even sew something. That would be a lot of fun. I’ve got some clothes-making projects I’ve been thinking about for months, now. I could do that, too.

I can write. With more than the standard 20 minutes to collect my thoughts and get them on paper. I can focus on projects I’ve had cookin’ for quite some time. I can even finish up the Autistic Woman’s Cycle Calendar (a monthly cycle tracker that’s especially for menopausal women on the autism spectrum) that I’ve been finalizing for Auptima Press. I can do anything I like — and that means I can finalize stuff I’ve been wanting to finalize.

I can actually get some stuff done.

And that’s good.

It’s very good, indeed.

Something better this way comes

person standing on shore looking out at ocean as sun streams through break in the cloudsI’ve been thinking a lot about how much time and energy has been consumed by the drama around “To Siri With Love”.

I’ve been thinking a lot about how much time and energy women have spent over the last days and weeks and months, dealing with all of the sexual harassment bullshit that’s been going on for as long as we all can remember.

And yesterday, I came across a Twitter post that really said it all for me.

i am sad that so much good women’s writing has come out of this moment and all of it is inevitably explaining this moment—what else could we be writing if we weren’t constantly doing the labor of explicating our own professional subjugation?
i am sad that so much good women’s writing has come out of this moment and all of it is inevitably explaining this moment—what else could we be writing if we weren’t constantly doing the labor of explicating our own professional subjugation?

It’s as true for my feelings about the autistic situation, as it is for my feelings about women and our place in the world — past, present, future. It applies to a whole lot of groups — people of color, disabled, queer, all the folks who have been systematically disenfranchised and have been fighting to stay afloat for a while, now. We’re all so busy just trying to stay alive, that we have no chance to do much else.

Take Black women voters in Alabama, for example… Nobody really notices Black women, until they show up and vote the way everybody else who cares about the well-being of folks who aren’t straight, white, and a certain slice of Christian, should vote. And then, suddenly, everybody’s in love with Black women. They notice they exist.

And then the election passes, and everybody goes back to their systemic inequalities, slipping back into somnolent indifference… until the next Major Threat comes along.

It’s a tiresome cycle, and it’s perpetual. And it sucks the life out of so many of us. Basically, if we weren’t constantly dealing with all the socio-cultural assaults, the injustice, the inequalities, and so forth, how much time and energy would we have for creating and writing about other things that have to do with us living our lives to the fullest in the kind of world we want to create, rather than constantly defending ourselves against the systems that somebody else created and we are sorta kinda stuck with?

I feel the same way about the whole Siri drama. I feel like I’ve really gotten derailed, over the past week or so. I’m very happy with some of the pieces I written, and I think they will stand the test of time. They speak not only to themes in the book, but also to enduring issues that we really do need to solve as an autistic community, even as a larger human community, if we are going to move forward. Unless we fix some of this shit, we can’t ensure that everyone will live with full dignity and opportunity to experience life as fully as we can. It’s the typical socio-cultural moshpit action that gets me all stirred up and bent out of shape on a semi-regular basis.

The problem is, the Agendas I’ve been addressing have been set by somebody else, the bar for acceptability has been set extremely low, and the stakes feel very high.

It’s addicting. It truly is. Going on Twitter to see what else people have said, looking for how people are responding, coming through the news, reading blogs, even occasionally going over to Facebook – which I tend to avoid like the plague – it all perks me up and gets me out of my low-level malaise that seems to be the flavor of the year.

But addiction is not how I want to spend my life. In fact, much of my life has really been marred by addiction coming from all directions, including from within. I deal with my demons on a regular basis, and I know how easy it is for me to get drawn into cycles of upheaval followed by pain management, and I know how susceptible I am to the buzz that comes from active social media.

So, I have to be careful. And every now and then, I need to step away. It’s healthy. It feeds the sides of me that get lost in the online shuffle. And it helps my system regulate back to where I am behaving like myself again, instead of just being a series of reactions to everything else that’s happening around me.

Honestly, that’s what I want most: To be myself, in my own way, rather than just being a composite of reactions to others. The great irony is, those others probably don’t even realize I’m there, in the course of their own internal dramas. Everybody’s got their dance to dance, without exception. So, the task of living in constant relation to everybody else’s self-absorbed gyrations (which may not make any sense to anybody else outside their head, including me) is a fool’s errand.

Unfortunately, I fall for playing fool far too often.

That being said, when I look around me at the world we inhabit, replete with its misunderstandings about autism, and human experience in general, I ask myself, How can this change? Certainly, it changes when we take oppressive and exploitive elements to task, and we oppose their proliferation. We can’t just let people get away with crap without saying something. On the other hand, we also need to add in positive influences as a kind of cultural ballast to give our community more to work with than just accusations that Those people did things all wrong all over again.

That’s the space where I want to be. I want to be in a positive frame of mind, in a position of creating new alternatives, not just taking the old, tired ways to task. I don’t want to be a freaking gatekeeper for other people’s sensibilities. I’ve got my own since abilities, and getting dragged down to their level is just so depressing. Plus, it’s boring. Seriously it’s incredibly . mind-numbingly . boring. Where’s the joy? Where’s the excitement? Where’s the future? There’s not a whole lot of it that I’m seeing in the old, worn, outdated attitudes about autistic people and how we function in the world.

When I look around me, I see a lot of signs of hope. Employers are making more of an effort to make room for autistic people. Our community is picking up speed, beginning to thrive, and the amount of writing by actually autistic people is increasing exponentially. Things genuinely are shifting in our favor, however slowly, and every day it seems like there are new glimmers of hope in our prospects for the future. No substantive change happens overnight, of course, and the changes that we do make have to be supported and furthered in ways that will make them more than just a passing fad. But, compared to how things were 20 years ago when I first realized I was on the spectrum, things are so much better now. And they’re better because we are paying attention to the stuff that needs to change and we’re getting allies who are actually capable of stepping up and helping us steer our collective ship any better and more positive direction.

So, while the critic in me practically salivates at the idea of working my way through offending research papers and books and memoirs and picking them apart to show how very Wrong they are, there’s a bigger part of me that wants to just ditch all that crap, leave the critiquing to others who have the time and energy for it, and set out in a whole new direction. I don’t want to get stuck in the middle of other people’s lousy inventions, their shoddy thinking, their lazy philosophies, handing over their whole minds to purported experts who have a ton of funding to spread half truths and outright lies about people like me. I want to live my own truth, and demonstrate very clearly that there’s a whole lot more to being autistic than just a collection of behaviors. The autistic experience is humanity-times-1,000, and with the depth and breath of our intensities, there’s a whole lot to be learned about what it means to be autistic — and what it means to be human.

Our neurology amplifies everything. It magnifies and emphasizes stuff that most non-autistic people would never even notice. And it also numbs us to what other people are very sensitive to. It’s fascinating, and why wouldn’t I want to dwell in that fascination, as opposed to getting dragged down into the intellectual malaise of people who haven’t figured out how to think for themselves?

Why indeed?

That being said, it’s time for me to wander off and go think about something interesting for a while, hone my thought process, and see what coolness I can come up with. Autism is amazing. It’s excellent. And it can be a hugely challenging gift. But when I rise to the challenge and work with things as they are, some pretty cool shit happens.

Let’s talk about that, shall we…?

Or, they might be all wrong about #autism…

You keep using that word. I do not think itmeans what you think it means.
Autism – You keep using that word. I do not think it means what you think it means.

Yeah, I know I’m a sucker for punishment, sometimes. I do things that cause me pain and suffering because it seems appropriate at the time. Like reading a book that’s full of half-truths and over-generalizations about autism. If you follow me here or on Twitter, you probably know what book I’m talking about. I’m torn about whether to post pictures of the text I’m about to discuss. I want to address specific points in the passages that I find problematic – and also rephrase them in a constructive, pro-active, and more informed way that puts autism in the context it deserves.

But I don’t want to burden all the readers (including myself) by repeating unexpurgated nonsense.

Let me be clear — the author of the book in question is the product of circumstances both beyond her control and well within her control (which she may not realize). And her viewpoint has most certainly been shaped by uninformed and exploitive “service providers” who have a lot of money to make off parents of autistic kids. They see a market, and they make the most of it. But they really serve themselves, in the grand scheme of things.

I spent a few minutes this morning reading the Introduction, and while there are major problems with a number of passages (pathologizing differences, buying into the party line about autism diagnosis stats being “startling”. Personally, I think the prevalence of neurotypicality is a lot more startling, but I digress. It’s hard to know just where to start — so far, the book reads like the logical product of mainstream “autism” thinking (marinated in a perpetual ideological bath of Autism Speaks “Truth-Speak”). But I should start somewhere, so let me pick out just one of the salient points that could use a little reconsidering.

Because, by God, we do need to reconsider autism and how we conceptualize it. From the bottom up. ‘Cause, you know what? There are a whole lot of autistic adults who went through the extended trajectory of autistic development — which to the untrained eye looks improbable, even impossible — and we are living proof of what’s not only possible with an autistic development trajectory, but also how wrong-headed the mainstream conception of autism actually is.

There are a lot of people who are suffering from mainstream misconceptions about autism. That goes for parents and children, alike. Autistic and non-autistic folks, alike. There’s too much money being spent on the wrong stuff — trying to cure autism, instead of addressing the core underlying external issues which turn being autistic into pain and suffering for everyone in the vicinity of the autistic experience. We’re not looking deeply enough. We’re only looking at our surface experiences, and we’re judging them based on our emotional reactions, as well as our physiological processes.

And it results in pain.

Take, for example, the book’s description of mothers of autistic kids:

typical look of mothers with autistic kids

… what might happen next… One would think it’s All Autism’s Fault, because “it” makes these mothers’ children behave in unpredictable ways. They might start jumping around. Calling attention to themselves. Scream. Start climbing something. Run away. Anything, really. And then what? People will stare, point, talk, criticize, and the parent(s) will be ostracized instead of being supported. Because clearly, they’re not “fit” parents. Every-(neurotypical)-body can see that, plain as day.

It’s a problem. Indeed. But isn’t the real problem the reactions of everybody around? The people judging, the people finding fault, the people pressuring the mothers to have “normal” kids…?

Seems to me, that kind of hyper-vigilance is less necessary in an environment where kids are allowed to be kids. And where the range of acceptable behavior (for kids, who are still developing, fer chrissakes) is a lot broader than our modern version of “seen and not heard”.

Divergence is less socially impactful, as well, where kids’ behavior is pro-actively managed. When autistic kids are given clear instructions on what the appropriate way to behave is, what the right things to say are, and they’re actively kept in line by firm discipline, developmental differences can be a lot less traumatic for everyone.

Impossible, you say? You can’t reason with autistic kids! You can’t pro-actively manage their behavior! Nonsense, I say. My own parents did that. They were firm in their boundaries, firm about the requirements of civilized behavior, and they were taskmasters when it came to how we kids (three of the five of us clearly on the autism spectrum) comported ourselves in public.

Did my parents catch all kinds of crap from the rest of the world, for how we behaved when we acted out? Oh, you betcha. And it wasn’t easy, because we were seriously a handful — and there were three of us autistic “firecrackers” among a total of five kids. But my parents kept the pressure on, kept us in line, disciplined us as necessary, and they were always very, very clear about how to behave and what to do/not do.

My childhood was at times excruciating. For both myself and my parents. We all caused each other a lot of pain, most of it accidental. But there was never, ever a question of whether or not I’d ever amount to anything. Because there was a clear requirement that I’d follow a certain trajectory to adulthood, whether it was comfortable or not, whether I seemed immanently capable of doing it or not.

There was an overarching assumption that children had to be taught how to do everything. There was none of this modern assumption that kids are inherently capable of figuring things out for themselves. It was known and accepted that kids were works in progress, and it was the job of every single adult to bring them up in a way that produced productive members of society. Life was about contributing as best as you could, not about expressing your individuality. It was about making a positive difference in the world. And to do that, you had to be taught. You had to be trained.

And the parents took that on.

Ironically, after raising 3 neurodivergent kids, my parents still look 20 years younger than they are. They don’t have those dark circles under their eyes. They don’t have the darting looks of hypervigilant folks battling socially-created PTSD. Were they perfect parents? Nope. They really made my life hell, while I lived in their home under their set of rules. I have all sorts of residual emotional crap I still have to wade through, that they set the stage for. I split from them when I was 18, and I stayed away for about 10 years, till I got on my feet. We were at extreme odds in so many ways, and we all had to grow up a lot, before we could peacefully co-exist.

But they didn’t blame autism for their woes. That was just part of parenting. And kids who were behavioral challenges with cognitive development issues were… just kids who needed to be trained in specific ways. I wasn’t pathologized with a condition that was portrayed as a permanently victimizing force. And while my mother did play the poor-me card more times than I can count while growing up, it wasn’t autism’s fault. It wasn’t some dread developmental disorder that preyed upon my brain, that was sucking the life out of everything.

It was the fact that I wasn’t behaving or making choices that matched what my parents wanted. And the consternation my parents felt about me, they also felt about my neurotypical siblings, who — trust me —  made far worse decisions than I ever did(!).

So, yeah, playing the autism martyr doesn’t get very far with me. I know it’s in vogue, these days. And it seems to carry more weight in urban areas, where advanced civilization is supposed to have eradicated all those messy organic conditions that are hallmarks of rural American ideological backwaters.

Bottom line, kids of all stripes — neurodivergent and neurotypical — need to be trained how to cope and conduct themselves in the world. Putting a roof over their heads and food on the table and games in the Wii or PS3 won’t automatically produce productive adults. Kids need to be… raised. That hasn’t changed in aeons.

So, yeah. That whole “ashy-faced mother of autistic kids” identity doesn’t really do us any good. It’s not the autism that’s at fault. This is a cultural creation.

And I’m really tired of autism being blamed for it.

Working… waiting… working… hoping… working.

snow monkey sitting in water

Oh, my heavens. It’s Friday, which is both good and bad. I have a huge deadline tomorrow morning — we’re launching an application at work that’s at the center of a huge political battle. And I’ve been in the thick of it for about a year, now.

When I think about it, it’s pretty amazing that I’m still functioning. This project has torn the living crap out of me and lots of people who worked on it. The main problem is the politics behind it — four six different bosses from three different countries, all at cross-purposes, all using those of us “in the trenches” as cannon fodder to build their empires.

And meanwhile, all we’ve really wanted to do was get the job done. Just get the work finished to our satisfaction and the best of our abilities. The project had to be done. It’s replacing a couple of other software applications that have kept people from doing their jobs for years. Those old apps have made a lot of people miserable / mad / frustrated / apoplectic (me included). So, replacing them with a single “solution” just makes sense.

It’s been expensive. It’s been demanding. It’s been extremely detailed and time-consuming. But it had to get done.

And we were all prepared to do it. We were ready to do it. To make the concessions. To compromise. To collaborate. To do what needed to be done. And we’ve done exactly that.

No thanks to our bosses. If anything, they’ve been the blocking factors. They’ve been the ones who have been making everything harder and more complicated than need be. They all want to hang onto their power and influence and make sure they have a place in the evolving world around us. But it’s been at the expense of the people actually doing the work.

Like me. And the other person doing a job similar to mine in another division, who’s been in lockstep with me, the whole way. She might actually be dying. She’s got COPD and a host of other health issues, and she’s been out sick a lot, over the past couple of months. She’s having surgery next week, and I’m not sure if she’s physically strong enough to survive it. Others on the project have been on extended sick leave, because the pressure was just too great. We’ve all been pushing forward. And the thing holding us back, has been “management”. The people in charge. Who see imminent success on the horizon, and all want to jump in and take credit for it.

Of course, we’ll just be pushed out of the way, as people who had nothing to do with any of it step in and start to crow about how they had a role in the success. While those of us who put on the proverbial brakes and kept people from making really bad decisions are pushed to the side and dismissed.

I just want it to be over with. And then I want to go on vacation for Thanksgiving week and not think about any of this. I won’t be able to, of course. Oh, sure, I can take vacation, but I won’t have all that time off. Partly, that’s okay, because getting this thing launched is pretty exciting, overall.

And when it’s live, it’ll be a thing of beauty.

But man, oh man, am I tired. Just fried. Over it.

And sick of everything.

Well, once this is all put to bed, with all the nagging details settled and accounted for, the next batch of tasks identified and prioritized, and the political wheels put in motion to get those things on the radar of somebody Very Important, I can step back catch my breath, and go back to living my life.

I just have to get through today in an orderly fashion and in one piece.

Then, tomorrow, I can dig in for a few hours in the morning… get this puppy launched… and get back to my life.

And do something other than work 12 hours a day for somebody else.

Maybe immerse myself in Joy.

#Autistic joy – it’s a thing. And we should have more of it.

agora theatre wall
Agora Theatre Wall – isn’t it lovely?

This morning, during my morning exercise bike ride, I read a piece by John Elder Robison about My Life With Asperger’s

Sex, Lies, and Autism Research – getting value for our money

How to get tangible benefit from the millions we spend on autism science

The US government is the world’s biggest funder of autism research.  For the past decade I have had the honor of advising various agencies and committees on how that money should be spent.  Sometimes I’ve been pleased at our government’s choices.  Other times I’ve been disappointed.  Every now and then I turn to reflect:  What have we gotten for our investment?

Autistic people and parents agree on this:  The hundreds of millions we’ve spent on autism research every year has provided precious little benefit to families and individuals living with autism today.  Over the past decade the expenditures have run into the billions, yet our quality of life has hardly changed at all.

You can read the full piece here. It’s worth it.

And of course it got me thinking… along similar lines to yesterday’s post, wherein I pondered the irregularity of autistic joy.

Returns on investment. Getting our money’s worth. Having something to show for our investments… What a world it would be, if all the money spent were going to opening up chances for good to flourish, rather than some “war on autism” dedicated to <begin sarcasm> hunting down and eradicating the dread disorder that “steals” perfectly healthy and happy children from their families and tearing apart everything their parents hope for and hold dear </end sarcasm>.

Now that we’re all triggered, let’s take a deep breath and step back from that hijacking of the collective consciousness by ve$ted intere$t$ and pause to actually recognize and laud the truth of Autistic joy.

If there’s one thing that seems to set Autistic people apart from non-autistics, it seems to be the capacity for joy. Honestly, looking at the neurotypical world, all I see is pain. Frustration. Anguish. Predators and prey. And the best that most non-autistics I know can hope for is just a temporary relief from their pain. Drinking. Drugs. Facebook. Yes, they have their friends and family, their careers and reputations. But even those joys seem so fraught with danger and conflict, there doesn’t seem to be much purity there at all. And the times that my non-autistic friends and associates are happiest, are when they’re numbing their pain with a stiff drink or distracting themselves from their pain and fear with some form of entertainment.

Truly, it’s such a dreary world they inhabit. Where’s the joy? Where’s the ecstasy? They don’t seem to have much capacity for it, and they treat my (and other Autistics’) capacity for unbridled joy like it’s a disorder. A condition that needs to be fixed.

How does that work, exactly? I just don’t get it. I would imagine it’s a little like being a really tall person during the 1700s, when people were considerably smaller than they are today.

The thing is, I don’t think non-autistic people are completely devoid of the ability to feel and experience ecstatic joy. I think they have as much capacity as we Autistics. They’re just not allowed to experience it by their milieu. They’re smacked down. Held back. Shamed and blamed and pressured into being certain ways because that’s “normal”. Huh. How ’bout that.

Meanwhile, it just holds them back. It cripples them, not only in their own lives, but also in how they relate to us.

It’s a little like the inexplicable conditioning of women to not really move that much in their lives. I’m noticing this more and more, these days, as I continue to move and be fairly limber and spry and strong, compared to my female peers. I take stairs two at a time. I lift 40-pound water bottles on a semi-regular basis. I rake my own lawn. I shovel refuse into my wheelbarrow and push it to the dump pile down the road. Even though I have issues with chronic pain and scoliosis, I get up and move around with pretty decent mobility.

Meanwhile, my female peers — friends and family — move a lot more slowly than I. Their joints are giving out on them, and they just don’t move as well or as freely as I do. In some cases, I realize it’s because they’ve been focused on being “good girls” for their entire lives, and good girls don’t jump up and run across the room. Good girls don’t take stairs two at a time. Good girls don’t stretch their backs and necks to get them to crack. They might go to yoga. Or take a pilates class. But they don’t really move freely in the course of their everyday lives.

And after decades of being demure, it’s taken a toll. They can’t just hop up and run across the room. They can’t dart out of danger, if something is flying towards them. And they run out of energy pretty quick, pumping themselves up with carbs and sugar and caffeine.

I’m not talking about disabled people who are dealing with physical limitations. I’m talking about healthy, non-disabled people who have actively limited themselves with their choices and behaviors. Because good girls don’t move quickly. Good girls aren’t physical. Good girls don’t take stairs two at a time. That’s not normal. And it’s certainly not free.

I have no idea why some people can’t deal with freedom. Or joy. Or ecstasy. But that’s not really my problem. My job is to make the most of my own freedom, my own joy, my own ecstasy. And to protect and shelter it in the face of all the people who covet it but refuse to allow themselves to experience it.

Autistic joy is a thing. Today, for me, it’s about getting back to my routine, which allows me to do so much more than I could if I had to re-design the schedule for my day, each morning.  I have a lot to get done, and my routine allows me to focus on the new and exciting things that interest me, even while I can consistently complete the basics that form the foundation of my life.

With my routine, I can get myself out of bed, wash my face, brush my teeth, and get myself downstairs with relative ease. With my routine, I can get my daily exercise, catch up on my online reading, have my breakfast, and get some writing done before I start my day-job work. With my routine — which other people might consider mind-numbingly consistent — my mind is freed up to do more interesting (and far more complex) things than figure out how to fix my breakfast. With my routine, I can get a whole lot of things done, that most people wouldn’t think are even remotely possible. And there’s a lot of joy to be had in the doing. Having four(+) projects going at the same time, and seeing them all coming to fruition in their own times and their own ways, is a rare treat that isn’t even on the radar of most people I know.

Autistic Routine — as much as it’s pathologized by the diagnostic establishment — is the very thing that makes it possible for me to function at higher-than-average levels.

And it’s something that brings me joy, which should be more than enough reason to depathologize it.

So, yeah. Rather than getting hung up on all the downsides of Autism (and don’t get me wrong — there are a lot of challenges that can make your life really miserable), maybe we need to focus more on the joy that seems to come part-and-parcel with  Autism.

Autistic Joy is a thing. Let’s have more of that!

Through the river locks of #autistic joy

Quebec river locks
I’m coming ’round to my desired routines again, getting back to some narrow interests that have drawn me in and held my keen interest for years at a time. I’m finding myself able to think again, after a months-long hiatus of all-consuming DO-DO-DO–GO-GO-GO. I’ve been so busy “upping my output” that I’d lost touch with the simple act of taking in.

I had all but forgotten about some of those vital interests — the books I’d bought to read (devour, really) and ingest and think on, long and deeply, got stashed in my office and I haven’t spent much time there at all for months… the papers I’d downloaded to take in and consider also ended up in piles in my office… the theories and philosophies that have lit up my life so brightly for so many years, faded into the background of my day-to-day rush to Get Things Done…

Yeah, I got busy. And necessarily so. All of it was important. All of it held my interest and taught me useful things.

But as with any all-consuming effort that flames up in a series of inner fireworks, there’s a price to be paid, and that price was the steady flame of joy from what’s held my interest in a steady, rapt embrace.

I think perhaps this is a distinctly autistic feature of mine. I tend to be so completely consumed by what I’m doing at the time, I lose sight of everything else. And then my best-laid plans to do such-and-such a thing in such-and-such a timeframe… well, that all flies out the window like a caged bird that’s realized the keeper left its door unhooked. At the same time, my “interim” interests (intellectual sprints in the midst of my conceptual marathon) tend not to last long. Maybe a few weeks, maybe a few months. And I can lose interest in them rapidly, so that the full roster of Productive Activities I’ve earmarked for doing… well, that just gets lost along the way, too.

So, I end up with a lot of things started, and not a lot finished in the intended timeframe. Ultimately, I do finish things. But it’s years after the original plan. One of my books took nearly 20 years to complete. While others took me maybe 6 months, tops. Other works have been under construction for a couple of years, and they still don’t feel like they’re ready to be done.

I guess I do need to let my imagination “off the lead” and let it run around wildly for a few weeks/months at a time. It re-invigorates me, when I’ve reached a point of overwhelmed ennui, and nothing I’ve been working on makes any logical sense anymore — not because it has no sense, but because I’ve pushed myself to the point of not being able to reason, to think, or to draw anything useful out of what I’m pondering.

It’s cyclical. It needs to be. And yes, it doesn’t conform to the usual timeframes of the neurotypical world. How do those people live that way, anyway? I don’t get it. It seems both forced and dessicated, as though there’s no room for anything human at all. Just a mechanization of our creative impulses.

I can say this (and complain bitterly about it), because I make my living as a Program Manager at one of the planet’s largest high-tech companies. I see (and have to live) this forced, artificial, mechanized way of doing things every moment of my professional life, and I don’t like it. I’d love to toss a wooden shoe in the whole works and grind the teeth off the gears. Stop the whole machine from working that way. But alas, ’tis not in the best interests of my ongoing employment to do that. I like to eat. I like having a roof over my head. I like being able to afford to live my life. So, I keep those gears turning.

It’s a master-class in Everything Not To Do, If You Want To Keep Your Spirit Alive.

Well, so it goes. Railing against the imperfections of the world is all very well and good, but it’s much more productive to counteract it.

And I guess that’s what I do, when I move at my own speed and meander through my personal projects. Like a boat moving between two bodies of water that are at different levels, I need to progress gradually through the “locks”, letting the waters flow in/out and lift (or lower) my proverbial vessel, as I move from one level to the next.

Maybe, just maybe, that gradual way is my own way reclaiming my own autistic identity and reinforcing my own “organic” process (much as I hate that expression). The daily grind really does show me how I do NOT want to conduct my own affairs. And while it does grind me down, and there’s a big part of me that wishes I could make a living doing what I love to do, rather than doing what others will pay me to do, because they’re under the impression that it “needs” to be done… I’m not holding my breath. I’m an inventor and a builder, not a marketer, and I’m not going to waste my time trying to force myself to work in a mode that doesn’t suit me.

So, the day job remains in place. Until I can make a living otherwise.

Well, the day awaits. I have a bunch of things I need to do, and I’ve got a social afternoon ahead of me. I’m looking forward to it. Hangin’ with another Autist. It’s always a pleasure and a relief.

Till Monday rolls around, and it’s back to the same old…

In the meantime, though, I’m good, just going along at my own pace, piecing things together as I go, and keeping my spirit alive and lively.

With joy.

All that joy.