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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“Old School” Autism Adjustment

school building in snow on film strip

I’ve been thinking a lot lately about how I structure my life. And I’ve been thinking about how I handle myself, regardless of what comes along.

Because I do. Of course, it falls down, here and there. Of course it does. I’m human. I have finite resources, and like a high-performance race car, I need to pull off the track, every so many revolutions, and get tuned up. I’m no different than a Formula-One race car, in that respect. High-performance vehicles, including my body and brain, need more specialized care on a more frequent basis.

That doesn’t make me disabled. It makes me high-performance with specific needs.

Interestingly, nobody’s calling F-1 race cars “disabled” because their tires need to be changed more frequently than your everyday family sedan.

Please.

And here’s where my New Year starts out a little early. I’ve got this new resolution to really “reframe” (much as I hate that word) the way I talk about Autism. Hmm… let me think of a much better word than “reframe” — okay, let’s use “redefine”. Because that’s essentially what I’m doing. The words I use add shape and texture to the concept of my Autism, and by using different words and different mindsets to talk about that central part of me, I can literally change the quality of my life and the thoughts/concepts that guide it.

If others “get it”, then great. If my example helps them to redefine their own experience (whether it’s Autistic or not) and create a more self-aware and self-directed way of life that’s got less pain and suffering, then great. But my redefinition isn’t for the sake of anyone else. It’s for my sake. I am Autistic, after all. 😉

One thing driving this shift is my experience of looking through my library of images I’ve used in blog posts over the past year or so. I’ve been actively blogging here for nearly two years. I started this blog back in June, 2008, then had to tend to other things, and I came back in February, 2016. Some days, it seems like a lot longer than two years, and other days, it seems a lot shorter.

I’m alexithymic like that.

Anyway, I noticed that so-so many of my images have really negative connotations for me. There’s a lot of suffering archived in my media library. And while searching in vain for some really uplifting images (or just some pragmatically strength-inspiring pics), I came up with nothing, time and time again.

sunflower

Oh, here and there, I found an image or two. But on the whole, things look pretty grim. I’d have to say the ratio of gloomy:gleeful is about 9.24:1.

So, that’s gotta change.

I’ve talked before about how we need more Autistic Joy, and I still believe that. But it’s not enough to mention it now and then in a blog post. It’s got to be the main theme in all my blog posts. And if not outright joy, then at least some discussion of how I’m managing my Autistic life — and doing it successfully.

Oddly, I feel as though I may be failing “the cause” as I write this. Because Autistic people are supposed to get support and resources for our difficulties. Yes, when appropriate, I absolutely believe that. If I am completely and totally unable to help myself, then I do need extra help.

The thing is, I’m rarely, if ever, completely and totally unable to help myself. I may have lost track of all the ways my system was being slowly eroded by circumstances beyond my control. I may have allowed myself become so run-down that I lost my normal capabilities. I may have gotten so wrapped up in what I was doing, I forgot to eat, drink, sleep, and empty my bladder, and that’s making my life a lot more “interesting” than I’d like it, as I gingerly wobble across the house to get to the bathroom.

But those things are on me. I may be Autistic, but I’ve helped to create those conditions. I didn’t properly manage my life — which I’m perfectly capable of doing. I didn’t take good care of myself — which I know I need to do, so what’s my excuse? I didn’t set a timer (which I know I sometimes need) to eat, drink, sleep, and keep track of my bladder’s state. Self-created suffering is not the sort of thing I can use to demand more services for my situation.

It may sound like I’m being too hard on myself, but I’m not. I was raised to know better, and to do better. And I was raised in a world where I was expected to take responsibility for myself, even for the times when I struggle. Especially for the times when I struggle. Because everyone is dealing with something pretty Big, and they don’t have extra time and attention to devote to my own self-created issues.

If I’m capable of discerning my difficulties (which I am, more than anyone else), and I’m able to learn from my experiences (which I can, and do, regularly), then it’s my responsibility to make provisions for my situation. Manage my issues. Restructure my life so that I’m not suffering, if it can at all be prevented. And make the damn’ effort to not get myself into taxing situations that I know, from experience, are going to make life worse for me — and everyone around me.

Yeah, I’m old school. That’s for certain. My approach isn’t for everyone, but it most certainly is for me. And as one contingent of Autistic folks focuses on the disability side of things, I’m focusing on the “Autistic ability” side of things — because our lives are different and shouldn’t be expected to be exactly the same. And because I’ve figured out how to live my life as an actually successful (and yes, I’m using the word in its true sense) Autistic adult. I was as a successful Autistic child, teen, and young adult. I just didn’t realize it, thank you alexithymia. Turns out, the very thing that makes it possible for me to function effectively in situations that freak other people out, actually hides that effectiveness from the rest of me. So, I’m a heck of a lot more successful and happy and content than I realize.

Damn… I need to write a whole post about that, sometime. Or maybe I already have… Anyway, that’s another idea for another day.

So, with the New Year just around the corner, it’s time to get some more positive pictures in my media library. And get some more pro-active, pro-Autism posts in my blog. Staying stuck in how horrible everything is… well, that doesn’t serve anyone. Least of all me.


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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.

Of #autism and naming and claiming

Hanne Blank offers a helpful way into this discussion in her book Straight: The Surprisingly Short History of Heterosexuality with an analogy from natural history. In 2007, the International Institute for Species Exploration listed the fish Electrolux addisoni as one of the year’s “top 10 new species.” But of course, the species didn’t suddenly spring into existence 10 years ago – that’s just when it was discovered and scientifically named. As Blank concludes: “Written documentation of a particular kind, by an authority figure of a particular kind, was what turned Electrolux from a thing that just was … into a thing that was known.”
Hanne Blank offers a helpful way into this discussion in her book Straight: The Surprisingly Short History of Heterosexuality with an analogy from natural history. In 2007, the International Institute for Species Exploration listed the fish Electrolux addisoni as one of the year’s “top 10 new species.” But of course, the species didn’t suddenly spring into existence 10 years ago – that’s just when it was discovered and scientifically named. As Blank concludes: “Written documentation of a particular kind, by an authority figure of a particular kind, was what turned Electrolux from a thing that just was … into a thing that was known.”

I just found this, following my commentary from the other week about how naming a thing doesn’t mean you’ve invented it.

And we could say exactly the same thing about autism, with a few updates:

Autism is one of the year’s “top 10 new epidemics.” But of course, autism didn’t suddenly spring into existence 70 years ago – that’s just when it was discovered and scientifically named. . . . “Written documentation of a particular kind, by an authority figure of a particular kind, was what turned autism from a thing that just was … into a thing that was studied.”

Not to keep hammering on this pesky “nail”, but it matters.

It matters a lot.

Let’s see what I care about today…

three abstract people figures talking to each other
I have the day off today.

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”…

Sigh.

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.

Dunno. I’ll figure it out.

But whatever I do, I need to care about it.

Or I’m not going to bother.

Welcome to the intellectual sinkhole – arguing about the validity of #autism #diagnosis

sinkhole in pavement with cracked asphalt around it
Well, that was exciting. I guess. Over the past couple of days, yet another drama scene erupted on Twitter with people arguing about whether self-diagnosis is valid for autistics.

I mean, seriously, this is such a poor use of time.

Not because affirming the validity of others’ identity is pointless. Rather, because getting all spun up over it is. When we get all worked up with fight-flight responses, our ability to think clearly leaves the building. That’s how we’re built. It’s not even a thing you can dispute. It happens. Higher reasoning gets switched off by forces beyond our control — which kick in prior to conscious thought. By the time our systems have figured out that it’s happening, it’s already been done.

And we’ve probably said or done something we wouldn’t have done otherwise. If we’d had our wits about us and had taken a deep breath and gotten our sympathetic nervous systems calmed down, the tone policing wouldn’t have happened. The swears wouldn’t have unleashed. The accusations (some of them pretty accurate, but not the most kind) wouldn’t have flown.

And the argument might have remained a civil discussion.

Not yesterday, tho’. Nope. Not at all.

As a result, I muted a handful of people whom I’ve followed for quite some time. I didn’t block them, just muted them. Needed a break. Needed to not have to listen to them impose their versions of things on me, as though their version is the only thing that matters. I tried reasoning. And that got me nowhere.

Because they’d already been hijacked, I’m thinkin’. They weren’t even there anymore — just a bundle of reactions and an overwhelming need to own the Whole Truth About Autism.

Sigh.

Which brings me to thinking about community. People seem to think that community is a warm-fuzzy-accepting place, where you’re accepted for who you are. Especially autistic community. After all, we’ve wandered — some of us for years, even decades — in search of our kind, our tribe. And when we find others like us, it’s a huge relief. We feel like we’re home. The “honeymoon” commences.

Then the community shows up.

And it’s not pretty.

For the record, I was raised in community — not a commune or kibbutz, but a community of faith and subculture that was tight-knit and well-defined and highly cohesive over generations. To this day, I know that if I ever fall on hard times, I can always — always — look to that community for help and assistance. Because we’re connected in profound, enduring ways that have withstood the ravages of centuries of religious persecution and opposition from the rest of the “world”. Those connections involve a whole lot of extended blood ties, as well as regular participation in shared activities. Church services. Family reunions. Weddings. Funerals. Baptisms. Holiness retreats. Potlucks. I’ve eaten more sloppy joes, coleslaw, and baked creamed corn than I care to think about. And I can toss a mean horseshoe.

I’ve also born the brunt of constant social violence, my entire life in that community. Continuous demands and requirements were forced on me, as a regular part of being part of the community. A lot of it was to enforce the appearance of neurotypicality — wear the right clothing, interact in the right ways, participate in the right activities, have the right interests, talk about the right things. I’m not putting the word “right” in quotes, because within that context, those were the right things. Everything other than the standard-issue, community-approved attire, behavior, activities, interests… those things were threats to the connection I had to everyone around me.

And they were not allowed.

Period.

If you did not comply, you were Out. And I mean Out. A lot of people left, over the years. I was one of those who split as soon as I could do so safely. I quit going to church regularly at 16. And once away at university when I was 18, I don’t think I went back… for years. I even broke from my family of origin for a number of years, just to get my bearings in the world. Community life had done its best to suck the independence and authenticity out of me, and when it didn’t succeed, it was vicious. Brutal. And not only to me, but to my extended family, as well.

When you live in that kind of community, if you screw up, your parents suffer as a result. And your siblings. And your aunts and uncles, your cousins, your grandparents. Anybody in your life who didn’t manage to steer you back to the straight-and-narrow was charged as an accessory to the crime of your “waywardness”. Everybody hoped, of course, you’d come home like that prodigal son. But in the meantime, if you weren’t around to pay for your sins, someone else would be made to pay.

So, when I hear people lauding the idea of autistic community, I have to smile. It’s a crooked, sideways smile that doesn’t reach the whole way across my face. Because to me, community doesn’t imply the same things it apparently does to others. And I wonder if people are genuinely aware of what’s truly required for community to thrive and survive? It’s not just about bringing people in and accepting them. It’s also about keeping certain types of people (and behavior) out, and establishing what’s not acceptable under any circumstances.

Community can be brutal. There’s just no two ways about it. And if we’re to truly build a new type of connection with others in an ever-expanding network of support for our autistic kin, we need to face that fact — and decide what we’re going to do about it.

Personally, I think we can use our autistic minds and perspectives to build something very different from the type of “neurotypical holodeck” I grew up in. That world was spawned in the trauma of 13th century western Europe. And it’s dragged a lot of pain and suffering along with it into the 21st century. There’s no need for us to replicate that. Yes, trauma and drama are very much a part of our autistic experience, but we’ve got a lot of very creative thinkers in our midst, and we’ve got a huge range of abilities and interests and capabilities and voices who can contribute to the discussion.

Provided we can actually listen to each other.

Which is an open question in my mind, to be completely honest.

Anyway, I’ve been thinking that rather than having a monolithic overall “autistic community” per se, autistic community might actually consist of different “pods” of interconnected folks who share deep connections in specific areas. And it may actually be less of a noun than a verb. Community is something we do, as well as something we have. It’s a living, breathing, thrashing thing/process.

And I’m building my own community, as I go, finding my own “tribelet” where I can. As for the larger community, it can be a bit of a trash fire at times, but I don’t have to engage with it.

It’s all an adventure. It’s all an unfolding process.

That’s half the fun.

And half the pain.

Of #autism and tardigrades – does naming a thing confer ownership? #SelfDXIsValid

tardigrade

And God said, Let us make man in our image, after our likeness: and let them have dominion over the fish of the sea, and over the fowl of the air, and over the cattle, and over all the earth, and over every creeping thing that creepeth upon the earth.

Genesis 1:26 (KJV)

And Adam gave names to all cattle, and to the fowl of the air, and to every beast of the field;

Genesis 2:20 (KJV)

So, God creates Adam (man) and awards him dominion over all the creatures of the earth. Over “every creeping thing that creepeth upon the earth”. And God also confers to Adam the right to name all the creatures. Naming, ownership and domination have gone hand-in-hand for an awful long time. And periodically, it rears its head in the autisphere in an almost predictable way.

Once again, the issue of whether autism “self-diagnosis” (self-DX) is valid, flares up on Twitter.

It’s the same discussion argument that keeps coming up, time and again. I’ve had my own back-and-forth with people who started out wondering aloud if their opposition to self-DX might be their black-and-white thinking acting up again.

And I, in my apparently amazing Svengali-like power, have managed to so sufficiently piss them off, that they decide… No, it’s not really their admitted black-and-white thinking blocking them. Self-DX is NOT valid, they say. Impossible!

I always have to wonder about people who feel entitled to judge and police others. I understand the desire for intellectual purity and a clear-cut set of guidelines that clearly demarcates the “autism community” (such as it is). I understand the need for clarity, for standards. I understand the attractiveness of having gatekeepers blocking the intrusion of Munchhausen-esque pretenders who are looking for attention and a little drama. And I understand the need to establish official boundaries around who lays claim to scarce resources (tho’ on that last point, let me be absolutely clear that scarcity of resources is a result of political choices, and there are ve$ted interests who have a $take in awarding and denying services, so that last point is a jagged little bone that tends to get stuck in my craw).

Here’s the thing, tho’… Autism isn’t something that any one scientist (or a whole gaggle of them) invented. It’s something they identified in conceptual terms they could clearly communicate to the rest of the world, and subsequently diagnose, treat, and otherwise establish dominion over those whom they diagnosed.

They may have invented the conceptual framework for thinking about us and identifying where we fit in the world, but they didn’t friggin’ invent autism. Kanner didn’t. Asperger didn’t. Bleuler didn’t. They just noticed it. Documented it. Wrote shit down about it, and went on to science (and in some cases commercialize) the heck out of it.

And because they didn’t invent autism (I don’t care what Dr. Grinker says about it), they don’t have the right or the ability to say, one way or another, whether a person is autistic or not. God knows, they’ve fucked up often enough to call their expertise into serious question. If those same scientists drove cars the way they identify autism, they’d all have lost their licenses years ago. Or they’d be doing hard time for having run so many people over. Repeat offenders, many of them. Producing shoddy research. Misdiagnosing or denying autism diagnoses to people in genuine need of assistance. Playing gatekeeper to an amusement park full of rides that lock you into the seat permanently and spin till you’re nauseous and throw up all over yourself and everyone around you.

And yet, magically, they still get to keep their credentials. They do their shoddy research. They do their awful assessments. They deny and screw up and never think twice about the effect they’re having on others.

But, they’re the “experts”… right?

Here’s the thing that completely baffles me, when it comes to mental health folks and scientist-like individuals who screw up the autism thing. It seems to me (from the outside, admittedly), like they’re constantly covering for each other. And rather than taking each other to task, they gloss over the omissions and commissions with some non-committal “Well, there’s still a lot we have to learn” or somesuch. This is completely inconsistent with the behavior I’ve observed in mental health professionals I know (and I know a lot), who are always at the ready, quick to jump on each other and call each other out and warn you away from such-and-such a therapist, in matters like unresolved trauma, family dynamics, couples therapy, and any number of other hot-button psychotherapeutic topics.

And yet, when it comes to autism… silence. No judgement. Not even a constructively critical peep. Nope. It’s all “Well, nobody but a professional can actually diagnose you as autistic. That’s just how it is. Oh, and here’s my card…”

How does that work exactly? Seems that autism is good business, all around, and everybody’s looking to cash in on it. It’s just autism, right? And the people who are harmed by the most enterprising types, are the ones least likely to protest, to defend themselves, to make a stink.

Yeah…

So, about those tardigrades — teeny, tiny little micro-animals that can survive in outer space, as well as impossibly harsh conditions (like, a degree above absolute zero)… Unless you have an extremely powerful microscope, you can’t see them. And until we had the equipment, they might as well have not even existed. There’s a whole lot of stuff (animals, planets, star systems, chemicals) which we’ve only recently discovered in the past 100 years. It’s safe to say, those things have existed throughout time — and many will continue to exist, long after we’re gone. Just because someone noticed they were there, gave them names, and figured out how to study them, doesn’t give those people ownership of them. Nor does it mean they invented them.

They simply noticed they were there and put words to their observations.

Kind of like autism.

Just without the dehumanization that comes with all the Theory of Mind and “locked in” bullsh*t.

So, the next time somebody tells you that Kanner or Asperger “invented” autism, or behind-the-times “experts” are the only ones who are qualified to say you’re autistic, I invite you to join me in a hearty, boisterous laugh.

And then just walk away.

Reading the #Autistic Life

open book with a flaming heart inside
Image shows an open book with a flaming heart inside

This quite a long read – started while on my walk down the road and back, yesterday. I dictated the majority of it while surrounded by trees, so I think that helped. It’s something I’ve been thinking about a lot, lately, as I work my way through books by and about autistic people.

What does it take, to read the autistic life? Literature about us abounds, written by psychologists, psychiatrists, parents, and various other experts. And yet, the volume of work by autistic writers … lags. There are plenty of autistic people in the world, and some of them are excellent writers. So, if we’re to build up Autistic culture, we need to support our writers as best we can. Signal-boost. Read and comment and share. The thing is… that’s easier said than done. In this long piece, I discuss the experience of reading the Autistic life, how it affects me, how I do it, and how / why I don’t do it as much as I’d like. I fall short of my own hopes and expectations. But that’s for a number of excellent reasons.

Finding Myself in the Pages

Lately, I have been trying to read more books by and about the autistic experience. Reading is one of my “big stims” — it calms me like nothing else, and I do a lot of it. The thing is, most of my reading is research papers, with endless abstracts, discussions of methodology and data, conclusions and discussions swirling around in my head.

There’s nothing like a good research paper to ease the existential angst of daily life. There’s a discrete beginning, middle, and end, and most papers I read don’t last past 10 pages. It’s really wonderful to have access to this amazing research (via Google Scholar, especially), and when I’ve come across papers I couldn’t afford to purchase, some researchers have actually sent me copies of their work. That’s a very significant experience for me – akin to having a rockstar ask me to tune their guitar. It may sound like I’m overstating it a bit, but only if you don’t understand just how highly I regard researchers and scientists and really value the work they do. When I was a kid, all I wanted to do was become a researcher. It was my dream. But I found another way in life, which may have actually worked out better for me, personally. (More on that later.)

But increasingly, I feel the need to hear about real life people and real life situations, in all their anecdotal glory. That goes for autistic people and autistic life. After all, this is my tribe, my community, my shared reality. Why not listen to what others have to say about it? I also really believe strongly that autistic individuals absolutely need to support their own culture, so as best as I can, I try to read books by other autistic writers – especially stories about their lives. If I can buy a book, I do (usually through http://www.abebooks.com, so I can support independent booksellers). If I can find it at the library, I check it out. If I think the library should have a copy, I sometimes suggest a title to the acquisitions people.

It’s so rare — so, so very rare — for me to see my own experiences replicated on the printed page. To say that seeing my life experiences mirrored in the words of another person is good for me, is an understatement. I’m not sure what sort of statement would suffice, because frankly it’s hard to describe exactly what that experience is like. It’s putting a non-verbal, visceral experience into a format that exists in a parallel universe. It’s trying to describe tasting a food you’ve never eaten that has tastes and textures you’ve never before experienced. It’s like translating hieroglyphics into Latin. Some meaning, at least, will be lost. But I’m gonna try. I always try. That’s what I do.

For me, reading about the lives of other autistics is a very stop-and-go undertaking for me. I start with heady exuberance, picking the book I will disappear into, and then devouring paragraph after paragraph, highlighting the passages that seem to jump off the page at me – sometimes whole pages turn bright yellow with almost-straight lines of highlighter creating a jagged right margin of light – and I move from page to page with eager abandon.

Then I have to put the book down and step away for a while – and hour, a day, sometimes a week. Sometimes a month or two. I have to let it sink in. I am so accustomed to being invisible to the world… so acclimated to constantly translating the lives and sensibilities and experiences and values of others into something that is recognizable to me… that finding fluidity while parsing an experience that mirrors my own is a bit like trying to walk on your own two feet after balancing atop a galloping horse for four days straight, hanging on for dear life, your legs clamped tight around the heaving belly of the beast. When I “dismount” and step away from the steady stream of words, I’m wobbly on my feet. It takes practice to get my everyday mundane balance again.

You see, I’m not used to this. I’m not used to seeing myself on the page. I’m not accustomed to recognizing things at first glance when I read them in coherent, continuous sentences. I’m so accustomed to piecing myself together in fragments, looking for brief flashes of recognition to light my way, that to have one uninterrupted expression of autistic experience is, to be honest, almost blinding.

I blink. And I stumble. I put the book down and walk away, just as I used to put down the wide sweeper I used to clear my neighbor’s driveway and walk away, when the dust and the bright sunlight and the noise of the world around me got to be too much.

I fall back into literate silence.

A Life Continuously Translated

It’s not that I don’t want to finish the books. I do. With all my heart, I do. It’s just that it’s overwhelming. My inner life is like a desert in many ways – spare and clear and clean. It’s devoid of a lot of the cognitive “undergrowth” that seems to typify the neurotypical world. Where the average person — those other 67 people not on my spectrum — have a host of interactive relationships and confidantes and hobbies and activities (many of them relating to their kids) and plenty of opinions that get expressed and evolved on a regular basis, that’s not my reality. Their inner life seems to be the equivalent of an effulsive rain forest filled with drama and exuberant growth; mine in comparison strikes me as a desert with sand and scrub brush and cacti as far as the eye can see. An odd lizard or scorpion or snake… And not much rain. But there is life here. Beneath the surface, and under conditions that must consider in hospitable, there is life. And lots of it.

My outer life is very much like that inner life. As I look around, I don’t see a whole lot of “me” reflected in the ways and means of the world I inhabit. I know I’m quirky. I know I’m unique. But it never ceases to amaze me, just how unique others consider me. In my own eyes, I’m really no different from others in the ways that matter — I’m just really, really interested in some things. I just really, really get caught up in stuff that other people glance at briefly before moving on. And it never ceases to amaze me, just how little of the world actually resembles something I’d consider acceptable. The thoughtfulness, kindness, compassion, depth, empathy, meritocracy, abundance of libraries, good music, nutritious and tasty food, fresh air and plenty of time to enjoy it, nuanced variety of culture, and comprehensive start-to-finish recycling programs that all seem bare minimum prerequisites for civilization… where are they? What the hell, people? Where are they?

It’s not easy, having excruciatingly rare access to things that I consider fundamental to living a decent life. It’s not easy, rarely seeing your own values, your own sensibilities reflected or even recognized in the world around you. And it’s no wonder to me that non-autistic people are horrified at the prospect of autistic existence. To never be reminded of who you are, to never see yourself mirrored in the world around you, to never have any products or services or food or activities or inventions that suit you praised and “upvoted” for the good and useful things they are – except in the occasional case where some necessary implement of artistic sanity is hawked as a novelty, a fad, a doodad to pass the time – I can’t imagine that neurotypicals would survive for long in the world I inhabit.

As a queer non-binary person, also, I can pretty clearly say that my version of life would probably drive neurotypicals to the edge of sanity. My marriage is not so very different from straight people’s. Yet, it is different — and we’ve constructed it that way on purpose. My gender and the ways I express it are something my straight peers acknowledge only after they’ve gotten a few drinks in them and they’re feeling a little… uninhibited, if not curious. My marriage rarely comes up in casual conversations at work, unless I jump into the conversations — and then the discussion doesn’t last long. I’m most welcome when most of me is invisible. If I didn’t have to put up with this to make a good living (and make sure I don’t die destitute and dependent on a government that already wants to kill me), I’d never bother.

Most neurotypical straight folks I know have no stomach for this kind of life. To never see people like you on television, movies, or in popular media conversations, except to make fun of, or to be called out as an example of what you should never, ever become – that sort of invisibility, or worse, animosity… I’m sure that drives a lot of marginally straight neurotypical people to adhere with all their might to heterosexual arms. I don’t want to be unkind, and I hesitate to over-generalize — and of course there will be exceptions to these rules I’ve concocted — but I’ve been watching all this long enough to detect repeated patterns.

All around, I am a desert, compared to my rain-forest friends. As well as I may appear to blend, at the core, I do not fit. If my life’s essence were translated into a single sentence, it would be expressed in 50 different languages, including sign language, Morse code, pictographs, and the symbols of some alien race that appeared on earth for a few decades 10,000 years ago, then left when the locals got hostile. In nearly every aspect of my life, I am continuously translating what others say and do and model into something that might – just might, if I’m lucky – work for me.

And, more importantly, I am continuously translating my own experience into terms and conditions that non-queer people of all neurotypes can relate to. It’s essential to me that I meet people mid-way in creating the dynamics between us. It’s non-negotiable that I try… even if they do not. Ironically, I tend to translate myself so well, others don’t realize I am being translated. Except there’s just this one little thing or two that’s “off” about me. Like when I lived in Germany from 1985-87 and my German was devoid of any American accent. People guessed I wasn’t German, but they were certain I wasn’t American. A European of some kind. Maybe Danish…

It’s not that I am so terrible at being myself. It’s not that I’m ashamed of my queer autistic self. My queer autistic self is awesome! It’s not that I am so terrified of getting my ass kicked – although the prospect does come to mind, at times. It’s that I literally see myself as a perfectly valid thread in the intricately woven tapestry of life, and I have my place as much as everyone else – just as they have their place. We all do.

That sheer volume work has conditioned me to forever view my world through a lens. A filter. A prism of sorts that breaks out the light around me into distinct phases of the full spectrum, so that I can understand it better and do something with it. The bulk of that work falls to me, as I’ve rendered my uniqueness essentially invisible to the normalizing forces of the world. But it must be so, lest they try to rub me out and force my square size into their round hole – see Sonya Boue’s excellent piece for more. Getting my ass kicked is not nearly as violent as the imperative that we all conform. Nor is it as threatening. Frankly, I’d rather be beaten than part with my essentially autistic self.

Preserving my own autistic self while inhabiting everyone else’s world requires that I constantly apply a filter… and then act accordingly.

They said ______________.

What I think they meant is ____________, but what they really meant was ___________.

If I were in their shoes and I meant __________, what would I want to happen next?

Really? Who would want that?

But based on past experience apparently, they do, so just suck it up and act accordingly. It’s what they need. It’s what the situation calls for. Who cares if it makes no sense to me? That’s what’s required under the circumstances.

Suck it up, and move on to the next nonsensical situation. And forget yourself and your standards in the process. If all goes well, you’ll reach the end of the day without turning into collateral damage.

If I don’t apply the filters and react according to what I’ve learned, I run the risk of coming up short. Setting someone off. Making something nervous in ways that they don’t understand, but which somehow trigger them to intensity, even violence. I have failed socially more times than I can count, in ways that to this day I don’t even fully understand. All I’ve had is a sense – an empathic sense, a co-experience of roiling, uncertain, intimidated emotions — from the other side of the space separating me from my interactive counterpart.

I did it wrong.

I said it wrong.

I didn’t answer right.

I didn’t reply the way I was expected to.

And so follows the inevitable pulling back of that once hopeful but now distant other who is confused – and rightfully so – because I broke a rule of engagement that everyone knows must be obeyed. Or worse, I’ve bent to the rule into an unrecognizable shape, so that the original is no longer useful, recognizable, or desirable. I’ve turned it into something else, which makes my faux pas even more subversive, even more dangerous than a simply broken rule.

Looking Directly Into the Light

So when I read stories about autistic lives and autistic experiences that mirror in my own, it is with a sense of trepidation and a little dread. I must drop my filters. I must put down the lens. I miss look at these things without my skewed-by-design vision – the kind of skewed vision that in non-queer non-autistic spaces keeps me safe. I have to not just look, but experience these stories as my own. For they are. I have to take in these accounts of feelings as the person I am — as the whole of me. Viewing them as a distant “other” makes them unreadable, for the language becomes a polyglot mishmash of terms I can only understand from within them. Taking a cool, distant look at them… treating them as a subject to study, rather than to experience puts me in league with Francesca Happé, who said our “accounts are intriguing, [but] it might be a mistake to take what is said at face value”. (see Happé, Francesca. 1991. “The Autobiographical Writings of Three Asperger Syndrome Adults: Problems of Interpretation and Implications for Theory.” In Autism and Asperger Syndrome, edited by Uta Frith, 207-242. Cambridge: Cambridge University Press.)

Putting some distance between myself and the other autistic writer may seem like a safer thing to do (I know it seems that way to me), but in doing so, I find myself unable to decipher the multilingual, multi-modal ways of thinking and understanding that are native to me. To make sense of what I’m reading, I must accept that I understand what’s being said. I must drop the protective shield and let the stories in, where they strike notes and pluck chords that are usually only mine to play in the secure silence and secrecy of my own autistic soul.

And it angers me. It frustrates me. Here I am, sitting down in the privacy of my own home, and the safety of my own cocoon, and I cannot seem to let myself relax. I cannot sustain attention long enough to make the most of these precious experiences, these personal accounts which have been entrusted to me and I cherish as a part of my own people, my tribe… the living, beating heart of my own culture. I cannot seem to get myself the leeway to sit with these things for more than an hour or two. What is wrong with me?

Actually, there is nothing wrong with me. There is everything that is right with me. But that everything has gotten the shortest of shrifts, when it comes to actual practice in the outside world. Looking directly into my own reflection on the printed page is similar to looking directly into a stranger’s eyes. It’s too much. Literally. So much emotion. So much recognition. So much uncertainty. So much to process. So, so much. Who is this stranger I see? Who is this … me … speaking loud and clear?

When I sink myself into the experience and relish it fully — as I must — I am not only internally overwhelmed, but also propelled in 100 different directions. In the space of one page, even one paragraph, I can relive the vivid memories from my own life that match what I see on the page.

For every one mention of bullying, 12 different recollections pop up in my mind – both from my own experience and from instances I’ve heard about from others like me. I have to stop and ask myself if perhaps I was actually bullied a lot more than I think I want to see. I have to wonder if I miss read all those social situations where I thought I was fine and I thought people were my friends, but they were actually being cruel to me.

My life has been peppered with people who I thought we’re good for me, but who were actually very bad for me. I now know why I chose to develop relationships with them – the very fact of their meanness woke me up in a way. They kept me on my toes. They charged up my brain anyways that I needed for the sake of sustaining attention. Part of me needed to be around people who didn’t treat me right, not only — as the psychologists tell me — because it was familiar to me from a lifetime of mistreatment, but because the stress hormones stimulated my ability to be ON and be fully engaged with my own life. I wasn’t just a sucker for punishment. My system knew what I needed to stay charged up, and mean-spirited people who treated me like crap offered just the occasion to do that.

Of course, there was the inevitable confusion about what the social cues minutes – in the midst of all that sensory overload – the bright lights, loud noises, the quick movements, and the perpetual fatigue the dampened me in so many respects. The trauma, the drama that I hardly noticed, but “sank in” days, weeks, sometimes years later, and which still took a toll on my bio-chemistry and neurological wiring while it was happening. Alexithymia has been both a friend and then getting me in that respect.

The kinds of sidebars and tangential explorations of the past two paragraphs consume much of my internal time and attention, whenever I read Autistic lives. Just a mention of being bullied, just a paragraph about a social misunderstanding followed by ridicule will be set off an associative cascade that sidetracks me for hours, days, sometimes weeks… even months. I know that now. I didn’t before, when I was struggling to finish an eBook I’d downloaded back in 2016. I sensed it vaguely, but it’s taken me quite some time to understand that’s what’s happening.

Cue the Flash Flood

It’s not just dropping the filters… lowering the shields… that intimidates me. It’s also the open floodgates of information – all of it highly detailed, much of it carrying an emotional charge – that turns my reading of Autistic lives into the start-stop exercise… and trying to remember where I last left off in the book, and promising – challenging – chastising myself throughout the process.

I have to cut myself a proverbial break. I am not used to this. My desert life is not accustomed to this level of recognition and ease of empathy. I’m accustomed to jumping from conceptual rock to rock, while crossing the rapids of non-queer, non-autistic life. It’s fraught. It’s perilous. But it’s what I know.

Now this… this recognition. This unleashing of pent-up information I’ve categorized and tucked away in the back of my mind for future reference — lessons learned to keep me from re-committing crimes of social omission and commission that I still don’t fully grasp. This release of data points serves no protective purpose. What good can it to do me, aside from reminding me of my challenges, difficulties, and lack of place in this un-me-like world?

Like sudden storm in the desert, directly reading Autism sets off flash floods emotion, association, the re-experiencing of things I never thought I wanted to experience again. I am not used to this. The rain has nowhere to go when it hits the parched, cracked surface of my rock-hard shields. My earth cannot take it. I cannot absorb the sheer volume of all that liquid unleashed in such a short time. The veritable rainfall goes where it will, draining to the arroyos, building and building and flowing and growing, sweeping into the canyons, washing out gullies that have been blissfully dry for years, sometimes decades. The flash flood carves crevices into my understanding of who I am, who I was, who I can become, eroding assumptions, undermining my characteristic understanding what my identity should be. Here’s another Autist, apparently just like one-in-68 me, speaking of things that neither of us ever wanted to happen. We cannot turn back the clock, we cannot undo what’s been done, we cannot un-see scenes that were forced upon us in the unfolding drama of our lives. It’s just there, this shared fund of unwanted knowledge. It’s all just there. And it’s bearing down on me like a high wall of flash flood filling a space that I thought was just another neatly carved out hiking trail.

So, I jump out of the way. I scrabble up the side of the gully and pull myself to safety, waiting for the flood to pass. I put down the book. I turn off the tablet. I go do something very different for a while. Maybe I even forget I was reading the story, to begin with. I want to read it. I need to read it. Just not all at once. Eventually, I’m sure, the water level will recede, and I can continue on my journey. Maybe I dip a toe in the passing water, testing the temperature. Maybe I try to wade across. Maybe I decide to go for a swim. But the fact of the flood is there. Inescapable, the only thing I can do is engage.

Living to Read… Reading to Live

Small wonder, it takes me so long to read these books. Once upon a time, before I knew the first thing about why I was the way I autistically was, long before I even needed to know – I was a kid, what difference did it make? – I could read for hours. And I read fast. Book after book. Sometimes the same book over and over. In retrospect, I don’t think I understood everything I was reading (for all the times I spent on Lord of the Rings, I grasped only select parts that meant something to me). But total comprehension was not the point. The point was to read. To drag my eyes back-and-forth across the page and there with make the kind of movement that would soothe my frazzled nerves and give me a sense of consistency, show me pattern I could follow, grant me I cadence that was mine, all mine, and place me with in the safe embrace of the sound of turning pages.

Now, things are very different. It’s not just soothing I seek in my books — it’s something more. Something decidedly un-soothing. In reading Autistic lives, I must read for comprehension, God help me. I must do it for my community, I must do it for myself. I must do it, to lift something common from a place shared across space and time, to elevate it into the public view. To read, and then to write. To share and share some more — between myself and the writer, between the writer and the rest of the world. Culture doesn’t create itself. It needs human interaction as a delivery agent. Even if that interaction is sequestered to a book-lined upstairs study somewhere in Central Massachusetts. Culture does not live on its own — it lives through us, and I am a willing gateway.

And so I read Autistic lives. I keep my select set of books near to hand, with my highlighter and my odd sticky notes, and I read what I can when I can. I load up my eBook copies on my various devices – phone, tablet, laptop, desktop – and I email myself screenshots from the marked-up passages. I copy text and send it to myself. I blog about it. I think about it. I’m not sure that I’ve ever really cried about it, but that they may yet come.

Try as I might, it’s still hard for me to come closer, to fully engage with those words on the page. There is always this distance between me and the depicted world – a residual stamp left over from all my dealings with a non-autistic world that is nothing like me. There is still that habitual distance I keep between myself and others, because I am – after all – other. I am that by default and by choice. I don’t think it’s bad, I don’t think it’s good, I think it just is.

And being other doesn’t completely stop when I read the words of autistics. When I take in the accounts of others’ experiences which are so much like my own, I cannot help but compare and contrast. I cannot help but make myself an Other. Perhaps being “one of them” exposes me too much. Or maybe it’s more honest and accurate, to acknowledge that no matter how much we may have in common, we are still separate and distinct. Being surrounded by autistic folks, as I am now and then, I can still feel every bit as lonely as I do when I’m with allistics. Maybe there is no such thing as unity, and maybe even though we share core experiences, we are still too different from one another to truly connect in the ways that so many wish and hope to.

Part of me feels disqualified. So much for unity. But I know that my autistic brothers and sisters probably won’t hold that against me. Because they too are Other. And perhaps the greatest kindness anyone can do for us is to accept us as Other and simply accept it. Let that be. To allow us the space to be different, to be unlike the norm, to distinguish ourselves as wholly unique – all our fragments making up a series of loosely associated whole humans… The most separate being the most human of all.

And so this long piece brings me to a point of grudging acceptance – that it is unrealistic to expect myself to simply breeze through all of the readings about Autistic life and experience, as though it were just another research paper. These are excavations of hidden lives, archaeologies of autistic spirits, and each of the items pulled from the thick, protective dust of variously pulverized souls must be handled with care, like any artifact of prized antiquity.

We Autists are as ancient as ancient can be, and our fragmented lies are so deeply hidden. Should we not treat them as treasures? Should we not treat them the same care, caution, protectiveness that we would give a shard of pot, a piece of jewelry, and inexplicable item of adornment which surely must have been so very important to someone who wanted to wear them on their journey to the other side.

These are treasures which cannot just be back-hoe-d out of a pit and tossed onto a pile. They must be carefully, ever so carefully, lifted into the light of day, dusted off, examined, and yes – loved – into their full usefulness. They are not the sorts of artifacts that should be placed in a case in the basement of a museum. Rather, treated like the set of perfectly wrenches that got dropped by accident a long time ago, and which can be restored to usefulness with the proper attention and care.

What we find in these stories has worth. It has use. And so I must tread carefully as I mix my metaphors and wade across the sloshing arroyo of these stories, careful not to slip, respecting the power of the current, and knowing that for all the flood bearing down on me now, there could be even more close behind.

All these things need caution. All these things cry for care. And so I will allow myself that space… that freedom… to fully and completely commune. In the privacy of my own life, in the security of my own cave, and the silence of my half-healed mind where an entire universe lives and breathes and has its being.

And maybe, just maybe, the pent-up tears will come.


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#Autistic Day After – Roaming around the house with my headphones on

field with blue sky and clouds overhead

I had a very productive day, yesterday. I did so much that I’d been wanting to do. I wrote some things I’m very happy with. I drove around and did my errands. Shopped. In more than one place. Even went into a big-box office supplies store and… browsed! Imagine that. Usually, the overhead lights and myriad choices keep me from getting anything other than what I specifically came to buy (and wrote down on my shopping list). But yesterday, I improvised. And I found some pretty cool stuff that I’ve been needing. Okay, so I also picked up a movable computer workstation, which I don’t have room for (yet) in my house. But it was a bargain! 75% off the normal list price! So, that was — intellectually speaking — a triumph.

I refuse to let the fact that I don’t actually need it, to deter me from my sense of victory. 😉

I got so much done — and these were important things I’d been delaying for far too long. Yep, I finally got the audio workstation up and running, and in far less time than I expected. I broke up the task into two separate sessions, and I kept at it, till I reached a satisfactory conclusion. I scrubbed the shower walls. I organized my study. I removed the stacks of books and papers from the folding table set up in the dining room, which had effectively turned it into an alternate workspace for me. My dining room is now — almost — a dining room. I added a lamp to my upstairs study, so I can now see what I’m doing. I threw away stuff — including leftover doo-dads from a job I left over 2 years ago. The bag had been sitting in my study (of course) the whole time, as though I wanted to hang onto the memories of that old job.

Note to self, those memories are flawed. It wasn’t that great of a position, and in the end, it probably set me back. It’s just your alexithymia messing with you again.

I got my power cord from work, so I can work from home tomorrow, and I figured out where and when I probably lost my old power cord. I bought myself a battery-operated, cordless weed trimmer, so I can edge back the encroaching growth that’s responding to all the rain we’ve had with an explosion of enthusiastic green. I love having it this lush, after years of too little rain. But I’m starting to feel hemmed in. Today, I’ll give the tool a try — after reading the instruction manual, of course. Don’t want to maim myself in the process, which I have a tendency to do.

I dropped something on my toe, and it’s bruised and painful. But it’s not swollen and I can move the toe, so I won’t be going to the emergency dept for it. I’ve had broken toes before, and I know what to do for it, if it is broken. I don’t think it is. My feet bruise easily, and it feels more like a bone bruise. I’ve had this lots of times. I’ll just follow the standard protocol. And avoid the hospital. By all means.

I handled yesterday like a total boss. Even when my plans got messed up, I adjusted. I pivoted. I adapted. And I had a nap in the afternoon, which was good. I had a nice balance, and at the end of it all, telling my partner about everything I did overwhelmed her. Just thinking about everything I did made her head spin — metaphorically, that is! 😉

Today, of course, I’m paying the price for my hyper-productive day. My right knee is sore, for some reason. My head feels like I’m underwater. I’m in a bit of a daze. And I’m going to do far less today, than I did yesterday. Fortunately, I can. Because I got so much done. Today, I can relax. A bit. Just let myself be.

The biggest news, I’m happy to report, is that I’ve given up.

As in, I’ve given up having a lot of attachment to outcomes, when it comes to other people. Things I undertake. Plans I have. Projects I’m pursuing. I’ve been far too attached to the idea of specific outcomes, specific reactions, specific progressions of what-happens-next. I’ve gotten all caught up in the hopes and fears and dreams of what-may-be… and it’s blocked me from really focusing on what’s in front of me. Having a specific outcome in mind has ironically kept me from actually achieving those things. I’ve gotten so twisted up in thinking things need to go A Certain Specific Way, that when they don’t go that way, I’ve suffered.

Lord, how I’ve suffered.

When someone doesn’t react / respond the way I was hoping (which has been happening a whole lot at work, lately), I spend way too much time ruminating over what I did wrong, what I can do differently, why they did what they did… and it’s never a productive use of time. My partner has been unpredicatable, lately, too. Some of her good friends are seriously ill. And the partner of one of her colleagues just died from complications due to a condition that my partner has – albeit in a much less severe form. Cue the anxiety. For good reason. And all the work I do to help assuage the fears and reassure her… well, it’s not doing that much good, these days.

When my plans fall through, when stuff happens that screws everything up that I’ve been working on (which is also happening at work a lot, lately), I take it personally and get all mortified about things not going the way I promised they would. I have to report on my progress to people, and it seems like in the past months, I end up having to back-track and revise my story, every week or so. It’s really distressing for me.

These are the things I’m giving up. Getting all invested in things turning out a certain way. Putting on pressure to get things to happen a certain way. Pushing and advocating and all that other crap, that I’m supposed to want to do, for the sake of personal productivity and effectiveness. Oh, sure, I’ll continue to do it all — I’ll put on a good show. But put my heart into it? Nope. I’m done with that.

Just like I’m done with getting all bent over crap I’m supposed to care deeply about. I don’t care deeply about so much of this neurotypical, mainstream B.S. that’s supposed to be so important to me. Who cares? Who the hell cares? I certainly don’t. And I’m not sure why anybody else cares, either, except maybe to fall in line with the rest of the crowd and feel like they belong.

So, what’s all this got to do with roaming around the house with my headphones on?

A lot.

I put a lot of myself into yesterday. I sank a lot of effort, a lot of attention, a lot of my coping skills into everything I did. That was mostly for everyone else’s sake, to be honest. For the sake of my obligations to work, to my partner, to the neighborhood, the town, etc. Today, I get to spend the day on myself. I do have some stuff I need to do later. But that’s later. Right now, I’ve got my headphones on, I’m wandering around, alternately staring out the back door at the bird feeder, and curled up on the living room couch reading Austin Shinn’s book A Flickering Life: A Memoir of Autism (which I’m really enjoying and marking up sections to comment on later). I’ll go out for a walk later, just take my time strolling up the road and back. Then I’ll have a nap. I think. That’ll give me time to recharge my internal batteries, so I can finish up the must-do stuff this afternoon.

But right now, it’s time to eat some cereal, wander around the house listening to music I love, and chill.

 


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What’s in a word? Of the semantic sense and sensibility of #autism

Loomes paper wordcloud

Gill Loomes was kind enough to forward me her paper It’s only words: a critical ‘insider’ perspective on the power of diagnosis in the construction of autistic social identity. I’ve been reading it – and re-reading it – over the past couple of days, and I’m finding (and re-finding) a lot of thought-provoking ideas therein.

Every autistic person seems to feel differently about their autistic identity. They can feel differently from others, as well as differently within themselves, from time to time. I know I do. I first self-identified (actually self-diagnosed, because in the spirit of diagnosis, I identif[-ied] the nature of (an illness or other problem) by examination of the symptoms. I looked at a whole array of symptoms I’d experienced and struggled with over the years, and I used them to identify the nature of the problems I was experiencing in life.

Ironically — or perhaps quite logically — once I had a “diagnosis”, I gradually stopped needing one. How does that work? Well, once I had a thorough understanding of what made me “tick” (not in the stimmy way), what made things harder for me, what made things easier, my problems stopped being problems. And what sometimes felt like an illness actually led to a level of understanding that relieved — even prevented — so many of my symptoms.

And gradually, I’ve come around to feeling like I identify as autistic, more than I am diagnosed. I’m disinclined to the medical model — as useful as it was to me, once upon a time. — and I seem to be approaching a new juncture in my life. Much as Gill seems to be in hers:

I’ve spent years trying to find out more about this so that I could explain myself. I’ve worked so hard. I’ve studied. I’ve spoken. I’ve written and I’ve taught. But I’m tired of having to justify myself. I’m tired of fighting to explain that autistic women are different – different from other women, different from autistic men. I’m tired of trying to set myself apart by explanations that are unique to autism. I’m tired of it because it gives the words in my diagnosis, along with social understandings of autism, a power in my life that I’m sick of – all in the name of making me ‘other’.

Our differences are indeed our distinction. For good and for ill. And the words we use to describe ourselves have power. They are social currency – the meanings they convey and evolve are powerful agents of change. And from one culture to another, from one person to another, they can create different kinds of change. It’s all very complex. Dynamic. And yes, confusing.

One of the ways that I differ slightly from Ms. Loomes, is how power is perceived. I think my situation is very different from hers, because I’m not “out” as an autistic person. Just to my partner. Not to my extended family. Not to my workplace. Not even to my PCP/GP. Autism, for me, is a very personal thing — a phenomenon I don’t want to hand over to others for their interpretation, lest it be trampled like pearls before swine. People just don’t “get” autism. They have their ideas about me. I really don’t feel the need to get into it with them — perhaps because I sense the following will happen with me:

I’m tired of it because I believe strongly that this power comes not from the autism itself, but from a society that cannot tolerate difference, and that especially cannot tolerate unnamed difference. If you can’t find the words to articulate your difference – and the hurt, the brokenness and the vulnerability that it causes, then those things can’t exist – you are told that you are ‘normal’ or that, ‘we all feel that’. Well I’m fed up of this power – the power of a diagnostic label to account for, and to own, my inability to conform.

Because I haven’t shared my own diagnostic label, the society I inhabit doesn’t have that same power over me. I live in a country which violently opposes difference, punishes (sometimes kills) people who don’t conform and comply, and cannot tolerate any nay-sayers in this land of Golden Opportunity. God forbid I should be less than enthusiastic about my chances in life. God forbid I should be honest about my misgivings about the future of this nation, this culture. God forbid I should be anything less than proactive and positive and can-do in every damn’ thing I undertake. The forced optimism is tiresome and tiring. And autism is the ultimate “downer”.

What? Me autistic?! How could that be?

I find myself extraordinarily weary today. It’s been a long week, and I’m cranky. I’m tired of my job. I’m tired of my life. I’m tired of all the many and varied ways my life is more difficult than it needs to be. It’s a holiday weekend, but it doesn’t feel like a holiday. It just feels long. And there will be fireworks on Monday night, which I am dreading. I hate fireworks. Always have. They’re pretty, sure. But all that noise. And the crowds. And the change to my routine. Even if I stay home, I’ll still be “treated” to an intermittent barrage of bangs and pops and crackles and booms. It’s inescapable, this weekend. And I just now realized how it’s weighing on me.

So… earplugs.

But enough of my digression. Back to topic…

The power that words have is considerable. In the wrong hands/mouths/minds, they can wreak havoc.

how all-consuming this explanation (and one’s reliance upon it) can become. I’ve been so passionate about this idea. I am an autistic woman. I am not a woman with autism. Autism is a pervasive developmental difference and it affects every part of me. I don’t dispute this, but this is not where I suggest the problem lies. I argue that the problem lies not in the pervasiveness of autism in me as an individual, but in the pervasiveness of its use as an ‘explanation’ at the level of specific, observable behaviour – an account for everything that I am and everything that I do.

Melanie Yergeau talks about this in her paper  Clinically Significant Disturbance: On Theorists Who Theorize Theory of Mind. She talks about being disenfranchised from her own voice, being literally told that she wasn’t speaking for herself, articulating her own experiences.

Suddenly, the experts claimed, I wasn’t talking. God, no. “That’s your depression talking,” they explained. “That’s your autism talking. That’s your anxiety talking. Really, it’s anything but you talking.”

. . .

Regardless of what I said, it was my autism saying it. My body became site for ventriloquist rhetoric, words that never were. While conversing with the EMTs, desperate to appear sociable and “normal,” I found myself narrating my every anxious action with, “That was a pre-programmed response. That was a pre-programmed response.”

I do not know what they wrote in their charts. In my depressive moments, I tend to imagine that they mapped the ebbs and flows of my echolalia, in echolalia. “That’s just her autism talking,” the clipboard repeats, like a running toilet. “That’s just her autism talking, talking, talking. That’s just her—autism talking.”

When autism is considered a diagnostic category (which it is, according to the DSM-V and the ICD-10), it’s considered the domain of the professional class, a caste of conceptual overlords who may or may not deign to notice you, who may or may not dispense formal recognition upon you. I have the same issues with autism being in the DSM, as I had with homosexuality being listed (until 1973). It’s a difference, not necessarily a disorder or a disease. And yet, there it is — a condition, possibly co-morbid with a range of other issues… awaiting treatment.

It’s always problematic, when you hand over your self-definition to an official term-dispensing body of experts who work by committee and tend to change their minds from time to time. It puts you in a precarious position, and yet… For many of us, engaging with an amorphous diagnostic group-think entity is the first step towards getting a solid conceptual foothold in who we are, what makes us “tick”, what can help us “tick” differently — or perhaps stop some of the most bothersome ticking from even happening.

It’s also a first step towards securing a place in society. Especially societies which have low tolerance for divergence from their preferentially enforced norms. As Gill says about her own autism diagnosis:

I need this explanation because the world is unkind and does not tolerate difference. Anything that strays too far from ‘normal’ gets stamped on, unless it can account for itself and make itself legitimate – legitimate in terms that are acceptable to the social world. And so, my diagnosis takes on a social life of its own.

It’s a slippery slope, isn’t it? You need it, and then you struggle because of it. You want it, pursue it, and then can be used against you. But if you don’t have it, you run the risk of getting stamped on. And if you do have it, but you don’t tell others, you run that same risk.

Ultimately, it’s really up to each of us, how we engage with our identities, how we understand ourselves. How we navigate our social worlds. In the world I was raised in, nobody was really allowed to “use” disability — hidden or otherwise — to get accommodations. You sucked it up. You took a handful of pills. You did your duty and you did your job. If you died on the job, you were practically a saint. And if you sacrificed your own health and well-being for others (but still kept going, kept giving, kept suffering), you were given special consideration and held up as a shining example for all others to follow.

Chronic pain? Stop complaining. Everybody has pain.

Anxiety? We’ve got a religious denomination for that.

Digestion problems? Eat more of what’s bothering you, so you get used to it. Or, if you have to avoid certain foods, do so discretely. Don’t inconvenience others with your weakness.

Sickly? Fevered? If a handful of pills doesn’t fix it, remove yourself from polite society until you feel better. If you never feel better, we’ll arrange a nice burial for you.

In the context of today’s world, this all sounds cold and unfeeling, and yes — it is/was. There are still a lot of people who feel that way. That’s one of the reasons I don’t spend much time in that part of the world. That socio-cultural cocktail of religion, work, pills, and powering-through stopped working for me, decades ago.

That’s one of the big reasons I don’t discuss my autism with my family. In their minds, if you’re struggling enough to talk about it, you must really be struggling. So much so, that you’re just a little less than human. I worry about this happening:

the use of my autism as a pervasive explanation of who I am and what I do robs me of agency, of ownership, and ultimately of the
chance to learn and grow. In the case of pain, or of failure, we feel a need to name these – to account for them and to attribute them. Therefore, in moments of worry about (potential) failure, my story becomes:

“Autistics can’t do that. My autism makes that impossible for me.”

I think this world has a long way to go, before people with significant differences are actually accepted and treated with the same levels of equanimitous calm as standard-issue hyper-normative individuals. People have a strange way of limiting you, when they slap a label on you. And it all depends on their interpretation of the label. Of course, some labels can be empowering — granting you folk hero status. But in the end, these are essentially conceptual shortcuts, containers for collections of complex concepts which vary in significance from person to person.

The real question, in my mind, is what we do with our labels, and how we engage with them. We can’t help but use them. We can’t help but think about them. But what else can we do with them? Certainly more than we have, thus far.

… if you want to help those autistic people who are in pain, from failing according to society’s expectations, you can’t just do this by finding out more about autism in order to give words to our failure to conform, so that we are ‘off the hook’ (though still ‘different’, ‘other’, ‘broken’). You need to – we need to work to make the world a more comfortable, more  loving place for everyone to fail according to the harshness of society’s expectations and demands, and to learn from those failures and hurts (because, apart from anything, one of the best ways to make me comfortable with failure is to enable me to see others very obviously failing and recovering. Imitation is one of my learned skills – let me use it!). Otherwise we can’t grow – and we in turn cannot shape society.

I’ve personally seen how sharing my own failures and triumphs (in spite of those failures) has done others good. It’s mostly in my real life — attending meetings where I had to take full public responsibility for screwing up certain important tasks that messed up an overall project, then worked overtime to make up for it… admitting that I forgot something important… ‘fessing up to other various royal screw-ups that I was sure would alienate everyone around me, but somehow ended up endearing me to them all the more… At their core, people understand that others mess up. they can relate to people who do. And they look up to those who can recover and move forward.

But if I chalked up my failings to autism (which always plays a role)? What then? I’m none too sure that the otherwise kindhearted and compassionate folks who forgive me now for my apparently neurotypical infractions, would be comfortable with my autistic shortcomings.

Who knows, though? Who really knows? I might be exaggerating their reactiveness, but I’d rather err on the side of caution. There’s a lot at stake, not least of which my independent agency and standing in the world. I have a reputation to uphold — not because I care about what others think of me, but because that’s keeps me employed, so I can put food on the table and keep a roof over my head. I also like to buy a new pair of shoes, when my old ones wear out, every 5 years or so.

In the end, I think that our understanding and acceptance and relationship towards our autistic identities is also very spectrum-y. We go through cycles. We change our minds. Sometimes we suspect we’re not even on the spectrum, then something happens and we think, “Silly me! How could I have ever doubted it?!” And I think we should be given that freedom to question, to explore, to doubt, to reconfirm — both within ourselves and in the larger autism community.

Whether we’ll ever get that same latitude in the neurotypical world, is anybody’s guess. But we can at least start within. We can at least be our own best friends and provide the freedom we know we need — in exactly the ways we need it.


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