#Autism and its $TAKE-HO£D€Rs

man carrying briefcase and fistful of money
Earlier this month, there was a conference on Autism research in Rotterdam, and out of that came some discussion of how to fundamentally change how we talk about Autism, as well as how we identify who’s playing what role in the discussion. There’s Autism Community (those of us on the Autism Spectrum), and there are Autism Stakeholders — researchers and clinicians who build their careers around studying us.

Cos (@autismage) on Twitter proposed

I'd call any #autism researcher or clinician a 'stakeholder', unless they're #ActuallyAutistic. have an #autistic relative/partner, or do participatory work with #autistic pple. Those exceptions are 'community'. Therapists (with same exceptions) are 'stakeholders'. Very simple
I’d call any #autism researcher or clinician a ‘stakeholder’, unless they’re #ActuallyAutistic. have an #autistic relative/partner, or do participatory work with #autistic pple. Those exceptions are ‘community’. Therapists (with same exceptions) are ‘stakeholders’. Very simple

And that got me thinking…
Of course it did.

At first, it seemed to me that anyone who’s Autistic would be a “stakeholder”, because we have a “stake” in the discussions, the research, the ongoing developments, and so forth. We’re directly impacted by them, and we stand to gain or lose, depending on how those develop.

I use the term “stakeholder” all the time at work when I talk about projects, and the meaning we have for it, is someone who is directly impacted by the outcomes of those projects. They’re invested. They’re affected. They have a lot to gain or lose from the results. Just like Autistic people who are deeply affected by all the developments in research and policy and public discourse.

We’re stakeholders, right?

Well, maybe…

Taking a closer look at the etymology of the word, it struck me that the original meaning of the word was the exact opposite of how I was hearing it used.

Folks on Wikipedia say:

Per Webster’s 3rd New International Dictionary 1: a person entrusted with the stakes of two or more persons betting against one another and charged with the duty of delivering the stakes to the winner 2: a person entrusted with the custody of property or money that is the subject of litigation or of contention between rival claimants in which the holder claims no right or property interest

So, the idea of a stakeholder has nothing (originally) to do with the actual stakes themselves. They’re basically an “escrow agent” of sorts, with no personal investment in what’s going on.

And then there’s the popular conception of stakeholder as “someone who holds a stake in the ground to claim territory”. That’s something I’ve heard a number of times in the course of meetings at work, and the spirit of it carries through, as though we were in the Wild West (per the NY Times🙂

… when Western land was made available to those who would work and live on it, a stake became a section of land marked off by stakes and claimed by the farmer. By extension, a grub stake was money advanced for food, or grub, as an investment or loan.

And here’s where it gets interesting to me, and it becomes more apparent to me that we really should differentiate between the Autism Community and Autism Stakeholders.

First, the idea that stakeholders don’t actually hold a direct interest in the Autism Community. True enough, I believe. They’re interested in us, and they make a career off us, earning a living thanks to our “puzzling” existence (sarcasm). They’re stake-holders, not invested parties with personal issues at stake.

And then there’s the second “Wild West” definition of stakeholders — which seems even more apropos to me, considering the colonialism at its core. The West was “opened” by displacing Indigenous peoples from their ancestral lands, and if you could get your hands on a stake, you could get a piece of the action. The DSM-V and other diagnostic tools pathologize and marginalize us, and they’re used to clear us out of the territory of our own lives in a very real way.  And then the “settlers” — people who have taken courses, completed degrees, and gotten certifications — have moved in to profit from our marginalization.

Just as Nestle moves into an area and commandeers all the potable water, then sells it back to the rightful inhabitants, so have the “Autism professionals” moved in on our lives, declared us “unfit”, and then devised all sorts of for-profit paths to “rehabilitate” us in the image they desire — as often as not using violence in its many forms to achieve the goal of “normalcy”.

If that’s not colonialism, I don’t know what is.

And in a very real sense, the people who are profiting from explaining our existence to the world — after they’ve completely confused everyone, to begin with — are stakeholders. In the financial sense. In the territorial sense.

So, yes, Cos — we should differentiate between the Autism Community and Autism stakeholders. That distinction is more than semantic. For some of us, it’s life and death.

Thinking about this whole “Asperger and the Nazis” thing

In case you hadn’t noticed, a paper came out recently entitled Hans Asperger, National Socialism, and “race hygiene” in Nazi-era Vienna, and it’s been stirring things up in Autistic corners of the world. Apparently, Asperger’s role and involvement with Autistic children in Nazi-era Vienna was a lot less benevolent than a lot of people have supposed.

The news isn’t good, especially for those who have seen Asperger as an under-the-radar resister to genocidal fascists, a kind of light in the general darkness, whether it was WWII or the cluelessness that’s dominated discussions about Autism, lo, these many years. His descriptions of Autistic kids have been called out as perceptive, even appreciative, and his name has been associated with Autistic folks with a certain profile of abilities and support needs. But… he was allied with the Nazis.

The paper is open access, and you can either read it online or download a PDF. I skimmed through it yesterday. The text itself is over 30 pages, and then there are 10 pages of endnotes (which is fun for some of us – you know who you are 😉  It’s no small task to wade through paragraph after paragraph of carefully woven narrative, citations, references, and so forth, which go directly against the prevailing perception of the once-favored Herr Doktor.

Asperger never joined the Nazi party, apparently. But he did plenty to appear compliant. ‘Beginning in 1938, he took to signing his diagnostic reports with “Heil
Hitler”,’ and he described some of his partly-Jewish-descended patients as “Mischlings” (“mixed Jewish blood”, which was literally damning, for those times). This is just not good:

On 27 June 1941, 2 months before her third birthday,
Asperger examined a girl at his clinic named Herta
Schreiber (Fig. 6). The youngest of nine children, Herta
showed signs of disturbed mental and physical development
ever since she had fallen ill with encephalitis a few
months before. Asperger’s diagnostic report on Herta
reads as follows:

Severe personality disorder (post-encephalitic?): most
severe motoric retardation; erethic idiocy; seizures. At
home the child must be an unbearable burden to the
mother, who has to care for five healthy children.
Permanent placement at Spiegelgrund seems
absolutely necessary.95 (Fig. 7)

Herta was admitted to Spiegelgrund on 1 July 1941. On
8 August, Jekelius reported her to the Reich Committee
for the Scientific Registration of Serious Hereditary and
Congenital Illnesses, the secret organization behind child
“euthanasia.” In the form he sent to Berlin, Jekelius
pointed out that Herta had no chance of recovery but that
her condition would not curtail her life expectancy—an
unacceptable combination…

In the end, Asperger did have blood on his hands. As did everyone who actively cooperated with Nazis at that point in history.

Now, before you start thinking I’m an apologist for this sort of thing, rest assured, I’m not. I’m seriously reconsidering referring to myself as an Aspie, or talking about Aspergers Syndrome at all. I’ve never been 100% comfortable with referring to myself as having a “syndrome”, anyway. If I have a syndrome, then the rest of humanity does, too — and they’re far worse off (not to mention more dangerous and impaired) than I am, thank you very much.

Here’s the thing, though… So much of our completely justifiable outrage doesn’t account for how things were, back then. I often wonder why — why?! — any Jewish or otherwise non-Nazi doctor or professional would have wanted to stay and work in Vienna, in those days? It was their home… okay. They were settled there and had their roots there, and nobody was going to push them out. Okay. I understand that perspective. But if things are going south… or even smelling like they’re going to… why stick around?

I say this as someone who grew up in an environment that literally wanted to destroy me. As a woman, as an intelligent person, as a non-binary queer. I’ve moved a number of times in my life, and for the past 23 years, I’ve been settled in a place where I can peacefully exist without constantly looking over my shoulder or worrying about being attacked or losing my job or being pushed aside, just because I’m different.

I also lived in southern West Germany from 1985-87, in an area that had a lot of children of hardcore Nazis. Even some surviving Nazis. Around midnight in the pubs, when the televisions signed off for the day and the national anthem played, all the old-timers who were out late drinking would be mournfully silent during the song, then their stories would turn to the “old days”, for example, when they worked in concentration camps. Hmm. Something about sitting a few tables away from someone who might have had a day job at Auschwitz … well, it makes you think.

It still makes me ill, to recollect.

And what I remember so clearly from those days in rich, well-appointed, idyllic West Germany was how hush-hush everything “unpleasant’ was, and how incredibly screwed up a lot of people were. Heavy, heavy drinking. Domestic violence. Just a ton of dysfunction simmering under the surface of what was an otherwise prosperous and well-run society — the most prosperous in Europe, at the time. It was seriously messed up. If everything was that twisted under excellent economic conditions in times of peace, I can’t even begin to imagine how screwed up it was back in Asperger’s time.

Now, I wasn’t a professional in Vienna in the 1930s, so I can’t know for sure what I personally would have done at that time, but in my own life I’ve relocated over less dangerous circumstances, and I seriously doubt I would have stuck around. Maybe it’s because of the lessons from that relatively recent history that I’m so willing to relocate — I’ve learned what happens when you “stick it out” even though things are clearly developing against you. In any case, I’m pretty sure I would have booked passage and gotten the hell out of Europe, if I’d had the chance. Hell, even if I hadn’t had a chance, I would have done my best to get out of there. Of course, that wasn’t always possible, especially if you were Jewish, but Asperger wasn’t Jewish. He probably would have had far fewer barriers to leaving. He had more of a choice than most. He chose to stay.

With this in mind, my attitude has always been that Dr. Asperger did a deal with those devils. In fact, I feel like pretty much anyone who stayed behind and continued to be installed in their position in Nazi-occupied areas, had to collaborate at least a little bit, to keep practicing their profession. Think… Vichy France. And a little bit of collaboration could morph into a lot without even realizing it. It’s not hard, under those conditions, to get swept in, even if you are trying to find a balance. The vice was so tight, the control was so pervasive, and everyone and everything was so scrutinized by the Nazis’ machine, that I firmly believe there was no way anybody could have practiced professionally — especially medicine — without furthering the Nazi agenda to some extent.

There were some Schindlers in the crowd, of course, but the vast majority were not… making increasing concessions as the years wore on, to stay in the game, till the pendulum of history swung back around and they could get back to their non-Nazi-fied lives.

Does this vindicate Asperger or any of his other contemporaries who went along (er, like thousands upon thousands upon thousands of everyday people), hoping the bad dream would finally pass? Not even close. But it does put things in perspective.

And whenever we look at history, I feel we must view it in light of how things were, back then. Not how they are (or should be) now. That’s extremely hard, these days, because the world we live in (and lots of young people have grown up in) is so very, very different from how things were in 1930s Vienna. Or the 40s. Or the 50s, for that matter. Things that used to really suck have been turned into consumer commodities, with the rough edges buffed off to make them more saleable. The 1950s have morphed into the “mid-century” with stylish furniture and television shows (e.g., Mad Men) extolling that “simpler time”. But some of us still remember just how completely screwed up that time was, with women not being allowed to have their own credit cards without their husband’s approval, and homosexuality being a jailable offense. The 1960s have been cast in a counter-culture light, but for many people they were just an extension of the oppressive 1950s, with the Vietnam  War taking place of the Korean Conflict. I know my own upbringing in the latter half of the 60s was every bit as oppressive, sexist, classist and exploitive as the 1950s were for others. We look back through the lens provided by a market economy that has everything to gain from us reveling in the good, while setting aside the bad.

The whole 20th century was a bit of a sh*tshow, as far as I’m concerned. And yet, it was an improvement on the 19th. Indoor plumbing. Electricity. Internet. Every generation has its disgraces that it can never get free of. And when we lose sight of that, we lose the ability to think critically and assimilate the lessons of the past.

So, no, Asperger has never had a “get out of jail free card” from me. I’ve always known he was culpable. Especially for the stuff that wasn’t documented.

Plus, beyond the times he lived in, he wasn’t the only medical / psychiatric professional whose practices were suspect. Let’s not forget how young the psychological field is. It’s been around for just over 100 years. Not a long time, really, and in many ways, it’s still in its infancy (despite what the Psy.D’s of the world would have us believe.) Especially with regard to Autism, pretty much most medical professionals have been barbaric / sadistic in their treatment of people like me… And many still are. It’s not so different from the treatment of queers when I was growing up was. If you were a homo, you could get shipped off to a psychiatric facility, given the early version (ugh) of shock treatment, be beaten, killed, lose your job and your home… you name it. And there was nothing you could say about it, because those were the norms of the day. If you were really that different, that’s what you could reasonably expect.

I’m not saying it was right. I’m saying that’s how it was. And it was even worse in prior decades and centuries. When we lose sight of that miserable fact, we stop being able to have a rational conversation about Asperger, Autism, difference, and human nature in general.

So, no, the whole “Asperger was a Nazi collaborator” trope hasn’t ruined my day / week / month / year / life. I’ve always figured his record was far more besmirched than anyone guessed. Just the fact that he was able to keep practicing medicine after the Anschluss, and throughout the reign of the Nazis, always seemed clear evidence that he was compliant in ways that killed off people like me. We just didn’t have documented proof, till recently.

To which I say, “Meh. So what else is new?” People have been trying to destroy me, my entire life. They haven’t succeeded. Yet. They will keep trying. I don’t take it personally. I see them for what they are, and I act accordingly. I live my life — in places where I can live safely. I avoid people who wish me harm, and I try not to give them my money. I don’t take their sh*t, but I know my life force is worth more than hassling with people like that. I have things to do. I have another world to create. Asperger being ID’ed as a Nazi accomplice doesn’t make his work any less useful — for the good it’s actually done. It just makes our understanding of him — and the human species — a little more complete.

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.

All my life, I’ve tried to hide my weirdness from others… #OddGirlOut

Odd Girl Out excerpt - All my life I've tried to hide my weirdness from others. I've tried to pretend to be just like everyone else and now I don't know what to do or how to behave. I feel lost.
All my life I’ve tried to hide my weirdness from others. I’ve tried to pretend to be just like everyone else and now I don’t know what to do or how to behave. I feel lost.

It’s been a tiring few weeks. Summer is hard for me. Too much sunlight, too much activity, too much… everything. Bugs flying everywhere. Too little darkness. And so forth.

I know I should be happy it’s summertime — and the weather has been beautiful, lately — but it just overwhelms me, at times.

The best thing to do is go to bed early, pace myself during the day, keep with my routine… and remember that I’m not exactly like everyone else, so I need to give myself some more consideration.

One of the most tiring things about the summer, is all the people asking me what I’m doing with my summer “time off”. Am I going on vacation?  Did I do something fun this past weekend? In all honesty, my idea of a good time is just staying in with a good book, keeping the house cool and dark, and spending extra time in bed.

But nobody else seems to agree with me. So, I have to “spin” what I say, so it attracts as little negative attention (raised eyebrows, rolled eyes, sighs, probing questions about why?) It’s extra work. It’s worth it, of course, but it’s extra work.

Extra work for the summer.

And I think back to Odd Girl Out, now and then. There is so much to comment on in that book, especially as an autistic woman (er… non-binary individual who was born in a female body). Even though I’ve never felt comfortable identifying as female, my reality in the world has still be shaped by the outside influences which have treated me as a woman.

I haven’t felt feminine, pretty much anytime in my life. But I’ve been treated as such, so I’ve inherited all the invisibility and overlooking and misinterpretation and misdiagnosis that goes along with being an autistic female. I identify much more as non-binary, rather than trans, per se, and my gender identity is fluid.  Sometimes I feel almost female — almost. Most of the time, I feel like a combination, a gender “dim sum”, if you will, where I pick the parts of my identity that work best in any given situation.

But still… the issues that autistic women and non-stereotypical males face… those I face, too.

I’ve been thinking a lot about how invisible we are — especially to the typically oriented autism researchers. We’re starting to get noticed — women, non-binary folks, men who don’t “fit” the typical criteria for autistic presentation. But there’s a long way to go, before we’re actually understood.

Heck, there’s a long way to go, before just about anything related to autism actually understood.

Ah, well…

But there’s a darker side to this invisibility. Reference the quote from Odd Girl Out above – that the life expectancy of an autistic person is 10-30 years shorter than neurotypicals. Personally, that hasn’t been my experience. I come from an autistic family — a very long-lived autistic family. My Aspie grandfather lived past 100. My very Aspie-fied great aunt lived to 98. Most of my relatives who would easily meet the criteria for autism have lived long and full lives. So, I’m not sure that piece applies to me. I can see how it would apply to many of us — especially because we typically have so much trouble dealing with healthcare providers, and we may be unable to detect troublesome symptoms due to variable pain sensation — and variable sensations, in general.

Personally, I’m ambivalent about the prospect of living 10-3o years less than my peers. On the one hand, I feel cheated. On the other hand, life for an unsupported, unrecognized, marginalized autistic person can be dreary and dismal — especially when we’re so capable of so much more.

So much more achievement.

So much more contribution.

So much more emotion.

So much more participation.

So much more experiencing, period.

Even if my life isn’t “lived out loud” and in full view of the rest of the world, my overall experience is curtailed by the constant dealing with innately hostile situations — draining my energy from “peopleing”, standard-issue “adulting”, navigating the nonsensical, illogical, arbitrary world that tends to violate most of my sensibilities with impunity. Yeah, even though I do a fabulous job of shielding myself from the mindlessness of the world around me, and I’ve constructed an internal life where I am supremely comfortable and incredibly productive, I still feel cheated by the constant drain of my energy, time, attention, on things that are — frankly — beneath us all.

So, does the idea of spending 10-30 years less in the midst of this stupid mess really bother me? I’m not sure. I just hope the end isn’t too painful.

On the other hand… 

Will I let the stupidity of the world stop me from living my life? Will I allow the mindlessness of others throttle my joy? Why should I? Why should I settle for less?

I shouldn’t. And I don’t intend to. I keep to myself for a reason. Because the way things are in the mindless world is far too brutal and pointless to be worth my time, energy, and attention. I’m constructing my own world in parallel, laying in the scaffolding, the infrastructure for my own happy existence.

I’m doing everything I can to constrain the amount of personal investment I expend on the neurotypical world, which makes no room for me. I’m using the time and energy that saves me to create my own space, my own environment, where I am wholly and fully myself. Regardless of what the rest of the world has to say about it.

I was raised in a community that was “streng getrennt” from “the world”. They kept themselves separate and apart from the mainstream, because they saw what a tremendous trap it was, for people like them. After decades of questioning the value of creating that type of world, I now see the point of it. And I’m drawn to replicate that in my own life — just not as part of a religious community.

It’s all a work in progress. And it’s work that needs to be done.

Because regardless of what the neurotypical mainstream world thinks of me and wants for me (mostly, what it wants from me for itself), I have value and merit in and of myself. I deserve to live. I deserve to thrive.

Of course I do. And so do you.

What “#autism” are we trying to “cure”? A simple terminology change that could change everything._

fields divided - one growing and one ploughed
We’re separated by a fundamental conceptual difference that doesn’t need to exist

Hear me out, before you click away in disgust. I’d like to declare a conceptual “truce” with autism researchers. Way too much energy goes into rebutting and refuting often-well-meaning individuals whose stated (or implied) goals are to relieve the suffering of (autistic) humanity. I think we’re in the midst of a needlessly tangled mass of confusion which can be addressed and made right by a basic change of terminology – which in fact signals a refinement in how we approach autism in general.

This proposal is about more than semantics. It’s about the very roots of how we conceptualize autism, and where we put our energies in addressing its challenges and redeeming its experiences.

A few weeks ago, I was in discussion with several autistic women, and one of them brought up the idea of “curing autism”. Another one of the women was not amenable to that word at all — and I mean NOT. She got so upset, she almost left the conversation, and we spent a fair amount of time trying to help her calm down.

She did calm down, eventually, but the detour in the conversation was a stark and startling reminder of just how charged the concept of “curing autism” is for many people.

I’m not comfortable with it, either. I consider myself fundamentally autistic in nature. My family is all quite “spectrum-y”, and I grew up in a world where many people met the DSM-IV criteria for Aspergers. They’d also meet the DSM-V criteria for Autism, if anybody looks… but since that’s the “normal” way to be in that part of the world, nobody thinks to wonder if it might be “disordered”.

I don’t consider myself disordered. I’m just of a different neurotype than the other 67 people around me at any given point in time. When I view them honestly and without the customary masking, my well-concealed traits and qualities align neatly with the standard-issue descriptions associated with Autism. And when I talk about my life, I synch up nicely with the descriptions that other autistic folks provide of their lives – in both positive and negative respects. Fundamentally, I am Autistic. I am part of an Autistic community and culture. And like so many others on the spectrum, I wouldn’t change it for the world.

So, when someone talks about “curing autism”, it sounds to me like they’re trying to get rid of me… to eradicate the very qualities that bring vibrancy and enthusiasm to my life, as well as imbue me with the mind-boggling (to non-autistics) ability to get a whole lot of sh*t done in a short period of time, and do it better than just about anybody (except an autistic person) would reasonably expect.

Yes, autism can be challenging. Living in a non-autistic world as an autist is a pain in the ass, much of the time. I don’t see why I should have to be “fixed” or “cured”, when the rest of the non-autistic world doesn’t seem to be doing that fabulous a job of stewarding the planet and caring for its inhabitants. Why would anybody want to “fix” a collection of traits and abilities which have actually moved humanity forward?

To be honest, it feels like all that autism-cure research and the people producing it are “out to get me”.

Maybe I’m just being literal — it wouldn’t be the first time.

Then again, maybe that’s exactly what non-autistic researchers and scientists are hoping to do: cure autism, stop it at its root, weed it out from the general populace, so countless parents, families, teachers, and other allistic members of society needn’t be discomfited by our existence.

Here’s the problem, as I see it — they’re not really trying to cure autism. They’re confusing symptoms of social/biological/cognitive dynamics with a fundamental quality of life. They’re doing the equivalent of trying to change fair skin so it doesn’t burn so easily in direct sunlight… relieving suffering for “ginger” people with the palest of pale skin who suffer a lot from sunburns. That may be a noble goal, but some people are simply born with fair skin, and they like it. Or, they may not like it so much at times, but that’s what makes them who and what they are.

There are common-sense ways to address getting sunburned all the time. Like A) staying out of the sun at peak hours, B) covering up, and C) putting on some danged SPF-30 sunscreen. You don’t remove someone’s skin, or chemically change it, so they don’t burn. That’s a ridiculous thought. And yet, that seems the equivalent of what autism researchers are aiming for. They seem to want to get rid of my autism forever — the equivalent of flaying me alive “for my own good”.

Or do they want to get rid of autism? I’m not so sure. They want to get rid of suffering, and they believe that autism is the cause. Hmm. I suspect many such researchers are confusing their concepts. They’re thinking that extreme symptoms like rocking in withdrawn silence and refusing to interact are autism. They’re mistaking behaviors like stimming, intensely focused interests, and social “quirks” for autism itself. They’re operating within an elaborate network of reinforced false equivalencies that are skewing their understanding of autism and conflating our autistic ways of being with a widely varying mental disease.

They just don’t realize it.

And because everybody in the non-autistic autism-research community is agreed on their fundamentally flawed concept of autism (or they’ve agreed upon the general use of the admittedly misunderstood term for their common purposes), they’re reinforcing its misuse through practice, discussion, and funding. They’re inadvertently perpetuating cycles of counter-productive, highly problematic (some would say abusive) attitudes towards autistic people which not only harm us, but also prevent those scientists from even understanding what it is they’re researching.

But I think there’s a different way to conceptualize their work — and if they shifted their own frames of mind (and terminology) about what it is they are really doing, we might be able to make some headway in terms of relieving the suffering of so many autistic people and their non-autistic loved ones.

Rather than trying to understand Autism… What autism researchers are actually doing is trying to understand the root causes of the suffering that autistic people experience.

They’re not researching the Causes of Autism. They’re researching the Causes of Autistic Suffering.

What’s more, they’re looking for ways to mitigate those causes, so we (and everyone around us) can lead happier, less painful, more productive lives. They’re hoping to find the cause for our behaviors and symptoms, which are just that — behaviors and symptoms.

Those signs of distress and discomfort — the meltdowns, the blocking out of any human contact, the extreme repetitive behavior which may actually be self-harming in some cases (and yes, I’ve done it — from a young age, I used to be a head-banger and hair-puller who scared the crap out of my mother more than once)… I do think it would be useful to better understand how to avoid and manage the causes of those things. I do think it would help a lot of people on (and off) the Spectrum, to get some data about what eating a certain diet does to your highly sensitive system. I do think it would be useful to understand the biochemical nature of meltdowns and find ways to “nip them in the bud” before they turn into full-blown blow-outs which reduce many people like me to a faded version of themselves for days (even weeks) afterwards. I do think it would be useful for parents to better understand what prompts their children to withdraw and/or not speak, so they can A) give them the space to do what they need, B) not worry so much about it, and C) help their kids have more self-determination in how they interact with the world and develop into happy, healthy adults.

When we stop talking about “curing autism” and start talking about “relieving autistic suffering”, the research takes on a whole new direction. When we stop using the cognitive shortcut “autism” and start describing the exact problematic behaviors and traits that are experienced as a result of environmental, physiological, or social factors which form the substrate of their autistic distress, we may actually start having productive conversations about autism — and the dollars sunk into all that research might actually get somewhere.

Personally, I think the term “autism” is a red herring. It’s a conceptual catch-all that means whatever people want it to mean. It’s like the word “crazy”. People use it all the time, to avoid being more specific about what they really mean. Rather than saying “That man was deeply frustrated by what was going on, and his behavior became erratic and unpredictable in ways that scared everyone around him,” people say “That guy went crazy.” It’s quick, easy — too easy — and everybody thinks they know what it means. But they don’t. Not really. And that choice of words does unintentional (iatrogenic) harm.

Likewise, with autism, people talk about “children with autism” when they really mean:

  • autistic children who withdraw from sensory stimuli in ways that non-autistic individuals don’t understand
  • autistic children who experience physically, mentally, emotionally intense episodes of uncontrollable outbursts in the face of sensory overwhelm
  • autistic children who repeat words and motions to self-soothe in the face of sensory and cognitive overwhelm

You could argue that “autistic” covers all of the issues above, but that generalizes the situation too much. It chooses to focus on something that can’t (and shouldn’t) be changed — the autistic nature of the individual, making the individual essentially responsible for their own distress. More problematically, it glosses over the impact of external influences which actually CAN be managed and mitigated and totally misses the opportunity to understand the fundamental nature of the challenges faced — as well as the myriad ways those challenges can be productive and effectively addressed.

But when we change the words we use… well, that changes how we think… and how we approach the situation.

Here’s a quick example for you — below, you can see what a conceptual difference a simple change in terminology can produce. I’ve pulled the abstract from the paper  Evaluation of Intestinal Function in Children With Autism and Gastrointestinal Symptoms and changed some key terms — substituting references to “sensory distress” for blanket-term “autism”. I’ve also removed the biochemical references for readability. You’ll get the point.

ORIGINAL ABSTRACT:

Objective: Alterations in intestinal function, often characterized as a “leaky gut,” have been attributed to children who are on the autism spectrum. Disaccharidase activity, intestinal inflammation, and permeability were analyzed in 61 children with autism and 50 nonautistic individuals with gastrointestinal symptoms.

Results: Some children with autism had mild levels of mucosal inflammation on intestinal biopsy. <snip>

Conclusions: The present study supports the observation that children with autism who have symptoms of gastrointestinal disorders have objective findings similar to children without autism. Neither noninvasive testing nor endoscopic findings identify gastrointestinal pathology specific to autism, but may be of benefit in identifying children with autism who have atypical symptoms.

REVISED ABSTRACT:

Objective: Alterations in intestinal function, often characterized as a “leaky gut,” have been attributed to autistic children who withdraw from interactive contact and/or engage in repetitive, sometimes self-injurious behavior, as a result of heightened sensory distress. Disaccharidase activity, intestinal inflammation, and permeability were analyzed in 61 autistic children with behaviors related to extreme sensory distress and 50 nonautistic individuals with gastrointestinal symptoms.

Results: Some autistic children in sensory distress had mild levels of mucosal inflammation on intestinal biopsy. <snip>

Conclusions: The present study supports the observation that autistic children reacting to sensory distress who also have symptoms of gastrointestinal disorders have objective findings similar to non-autistic children. Neither noninvasive testing nor endoscopic findings identify gastrointestinal pathology specific to autism, but may be of benefit in identifying autistic children in sensory distress who have atypical symptoms.

To me, that second abstract reads very differently. And the results of such a reworded study might actually prove useful when thought about in different terms. Whereas the generalized designation of “autism” doesn’t shed much light on the precise nature of the issues, or the interconnected cause and effect, being more specific about exactly what’s at stake does serve to enlighten… not obscure.

Again, autistic reactive behaviors and sometimes disturbing traits are not autism. Rather, they can be signs of autistic suffering — something that most of us would like to alleviate.

I firmly believe that a relatively simple conceptual jump towards greater specificity in what exactly is meant and what exactly is being studied could align us, not continue to divide us.

Some might say it’s just a different choice of words.

I say, it’s a gateway to a whole different way of conceptualizing autism research — and a bridge to actual progress that can involve a whole lot more collaboration… not to mention productive results.


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Reading #OddGirlOut – When you realize what’s going on

Passage from "Odd Girl Out" describing exploring autism criteria - and realizing it applies to you
Passage from “Odd Girl Out” describing exploring autism criteria – and realizing it applies to you

What a lot of non-autistic folks fail to understand, is how critical it is for autistic folks (especially women and “atypically” presenting men) to understand the nature of our difficulties. A lot of non-autistic folks seem to think that drawing attention to problems will make them worse (or make them come into existence). As though we never noticed them before, or we’ve never struggled with them… sometimes for years.

Every single word of this rings true for me.

… but in the past I have failed. Confused and befuddled, I have given up every time.

Living without a thorough (and scientific) understanding of how you’re built and why you “work” the way you do — and don’t — is miserable for people on the autism spectrum. It just doesn’t work. Without an understanding of the underlying principles and the overarching themes of our lives, we lack the conceptual patterns we require to make it through each day in the best way possible.

It’s not that we’re looking for something to be wrong with us, when we investigate our autistic selves. It’s that we’re looking for the reasons that we’ve always known there was something different about us — a little odd, a little off — and we’re looking for the correct ways of A) conceptualizing it, and B) actively managing it.

My focus settles on deficits in non-verbal communication. ‘That’s true,’ I find myself whispering. I find eye contact uncomfortable and have to remember to do it. My body language and facial expressions are often off. Often I feel I have to arrange my features into what I believe is the correct expression. I once asked my doctor about this and she said: ‘There have been certain times when your expression was maybe not what I thought it would be, given what we were talking about. It’s very subtle, A look or an expression or a twitch or something that was slightly different.’

OMG, I do this all the time. I’m often deliberately posing in a way that I’ve learned will work in different social situations. My body language. My facial expressions. Holding myself in a certain way. So that I don’t stand out. So that my subtle differences don’t make others uncomfortable in an almost undetectable way — which nonetheless causes people to instinctively distrust me or shut me out. I’ve learned from half a century of experience, what works and what doesn’t. Small wonder, I fit in so well, now. I’ve learned my role well.

Ironically, I’m at the age where I’m less and less interested in playing that role. Funny, how that happens…

. . .  I certainly do have deficits in developing, maintaining, and understanding relationships. This I have always known and recognized. I can often begin relationships, but don’t have what it takes to keep them going. I rarely see any of my extended family. I can go for a year without seeing my parents, aunts and uncles or cousins. I find it overwhelming. I don’t know how to be involved with the minutia of other people’s lives.

Same here.

Same here. ( Is there an autistic echo in here? 😉 )

I’m terrible at maintaining relationships. It’s hard for me to deal with other people, in general. Especially when they are as overwhelming as my family. I’m okay when I’m with them intermittently, but honestly… navigating their emotional dramas is exhausting. I don’t have a whole lot of interaction with my family, to be honest. My father’s recent illness caused a massive “spike” in the frequency of my interactions with them, and it has not been easy at all. And I find myself pulling back deliberately from my family, even as they seem to need me even more.

That’s why my work life is so important to me. My job ensures that I have regular contact with other people that’s not necessarily a personal connection. It forces me to develop relationships with others, even if they’re not like me.

 

I’m just awful at all the relationship stuff, to be frank. That’s not a criticism — it’s an observation. I don’t “do” family or relationships very well. On my recent business trip, I got to see my cousins who live on the other side of the country. I was doing pretty well with everything — the unfamiliar place, interacting with the cab driver, the bright sunlight, the smells of their apartment. But I completely blanked on getting a picture of them. The rest of my my family takes a lot of pictures. They share them. They email them. They sit around and look at them. And when you travel and see other family members, they expect you to take photographs. It’s almost like they don’t really believe they exist — or you went to see them — unless you have photographic evidence. Sigh. Honestly, can’t we all just live our lives, without having to document every single danged experience for posterity? Argh!

Anyway, I got a picture of the jade plant outside their apartment, because it was scientifically fascinating to me. But pictures of my cousin and his wife? Nope. Why would I do that? 😉 I was so super-saturated by the drive along the ocean and up and down city streets and the tour of my cousin’s workplace and then the Asian restaurant where we ate… I totally forgot to even think of getting a picture.

I had a great time, but I was maxed out, for sure. The things I experienced, I experienced fully — I just didn’t get all of it. And I didn’t get any pictures of a lot of people. Inanimate objects, yes. People, no.

I think maybe that ties in with my difficulty in deciphering others. I can’t read their faces very well, I can’t interpret their expressions. I’m leery of taking bad pictures of them… so, I shy away from the whole activity. I personally hate having my picture taken. It feels intrusive and annoying, and I don’t want to do that to others — especially when I’m feeling maxed out and super-saturated with all the sensory input.

Anyway, yeah — it’s actually a huge relief to know there’s a reason why I’m stumble and fumble so much, socially speaking. I didn’t just magically develop social interaction and relationship issues when I learned about autism. I didn’t come up with some “medical student syndrome” where reading about disorders causes spontaneous experiences of them. I’ve always been this way. I’ve struggled all my life with this. And until I found out what was really going on, I just figured I was stuck.

Now, though, I have a whole bunch of information I can work with, and that’s a good thing. I know a lot more about autism and my own individual experience with it. That gives me something to work with.

Anyone who says autistic folks should be shielded from a diagnosis because it might do more harm than good, either knows precious little about the autistic experience, or their a control freak, or they’re downright cruel. I’ll give folks the benefit of the doubt and consider them clueless. But regardless of what others may think or do or advocate, I’ve got my own experiences to go by, I’ve got access to a whole lot of research about autism, and now with books like Odd Girl Out, I can see reflections and hear echoes of my own life.

And that’s a wonderful thing.

A wonderful thing, indeed.

Feelings, feelings, more #ActuallyAutistic feelings – and what I can do about / with them

Odd Girl Out page screenshot

A few months back, I went on a “jag” about Alexithymia (click here to read posts I’ve tagged for the topic) — the inability to recognize your emotions. I’d taken an online test about it, out of curiosity, and when the results came back, it got me thinking.

And thinking

And thinking some more.

And then, while recently reading Odd Girl Out by Laura James, it didn’t take long for the topic to come up, altho’ obliquely. There’s a lot in the book that she touches on briefly and then moves on — which works for the flow of the book, especially if you understand what you’re looking at and can relate to it. For others, though, I think some gems can easily get missed. So, my plan is to (intermittently) follow along “after her” and put a little more explanation / context to the book. If you read it carefully and stop to consider what’s on each page, you’ll get a pretty damn’ good primer for what the interior world of an adult, late-diagnosed autistic woman is like.

But of course, people aren’t necessarily going to understand the significance and meaning of what they’re looking at. So, that leaves it to autistic folks to help put some context around it. I actually hope more late-diagnosed women (and men) do the same and post some interpretive commentary on their blogs, because this is a great opportunity to enlighten the mainstream about our issues. It’s an open door, so let’s not hesitate to step through.

Anyway… where was I? Oh yes… Alexithymia. Emotions. Not doing well with them. At all. Getting overwhelmed by them — good or bad — and not being able to name them. Needing words to sound like they mean. And wanting (more than anything) a neutral life that simply flows.

No sudden movements. Just the steady unfolding of days, predictably and quietly.

Sounds like nirvana to me.

Seriously, it does. As much as I want to believe I can push myself at the pace of the rest of the world, as much as I want to keep current with everything that’s happening, to not stand out as a “problem”.

Good feelings really can be as overwhelming as the bad. They still demand surges of energy to process and experience. Even if the surge of emotion is “good”, it still makes my adrenaline spike. And when that happens, my biochemistry makes it well nigh impossible to process information with higher thought. Everybody’s body does the same thing. That’s how we’re built, pretty much — stress hormones shunt energy and capabilities away from higher thought and focus them on raw survival.

That’s not usually a problem for (neurotypical) others, but it’s a big issue for me. Because I rely on higher thought processes to get through my day. It’s how I interact with life. It’s how I make sense of things. It’s how I stay safe. So, when emotions run high and my thought process gets dragged down into realms of oversimplified brute survival, it’s like chopping off a finger while I’m trying to type up a sensitive legal document that can land me in a whole lot of trouble if I mess up. Other people apparently feel invigorated by drama and stress, but I get so “turned around” and confused and disoriented, it makes everything worse.

I am not at my best, when there’s unwarranted drama — especially the kind that is illogical and purely for entertainment purposes. A whole lot of people frequently create drama to make themselves feel better, God help me. When that happens, I get dragged down into a pit of despair and disorientation that heaps even more stress on me and makes it even harder to think and process my surroundings.

In fact, the processing isn’t just about thoughts and emotions. It’s about sensory details. We autistic folks can be so “tuned in” to every sort of input around us, that we need every shred of higher reasoning we can spare, just to navigate the basics. So, when we’re inundated by stress hormones that shut down those faculties, we can literally be endangered — unsafe — threatened. Because in our diminished state, we can misinterpret clues from the world around us. Walk in front of a bus. Get mugged. Be lured into dangerous situations. Get taken advantage of, preyed upon, laughed at, even beaten up.

It’s no joking matter. Having our faculties impaired in any way literally puts us at risk. And when you’ve been through enough of those kinds of experiences (as so many autistic adults have), you develop a zealous love of sameness, neutrality, equanimity. The peace of mind and calmness of body that some people think is optional (or that you just do at a zen retreat) is not optional for us. We must have it. Or the real-world consequences can be severe.

So no, stress is not good for us. Emotional upheaval can be a problem.

And that goes for good kinds of upheaval, as well as the bad. Basically, anything that pumps up your system with drama hormones is a liability. It’s something I strive to avoid — and how ironic that I live with a bit of a drama queen. Laura James’ descriptions of the discrepancies between her temperament and her husband’s… well, that sounded familiar.

So, yeah — emotions. Wild fluctuations (which seem to be the norm, these days) are not my friends.

Plus, half the time, I can’t figure out what the heck I’m even feeling. Seriously, I have this pretty intense disconnect between what’s going on with me emotionally and my awareness of it. I’ve never really given it much thought, despite my partner’s repeated complaints that I’m “emotionally shut down”, and multiple therapists’ insistence that I must be deeply wounded, to be so “out of touch” with my emotions. I developed a bit of a complex about it, actually, taking everything they were saying to heart, and believing them. After all, they were the experts, right? And with one therapist after another telling me the same thing — almost like they’d been consulting with each other on the side — I figured they knew something I didn’t.

Actually, they didn’t know half of it. They knew far less than half. Maybe 1/67th, tops. And there was really no reason for me to develop a complex about it. Because how I process information from the world around me is just different from how they do it. I’m not damaged. I’m wounded, yeah, but in ways completely unlike what they think. I’m not “shut off” from my emotions. I just process data from the world around me in very different ways. And it takes a whole lot out of me, when I have to work overtime at processing under stressful conditions. Fatigue makes everything worse, and one thing leads to another… and before you know it, I’m in a state. They didn’t relieve my existential distress by poking and prodding at how I process emotion. They actually made it worse — which was great for them, because it locked me into a cycle of repeated problems that they were so convinced they could fix.

They weren’t fixing anything. They were creating problems. And I still resent them for it.

Well, I can’t get all tweaked over what others do. I’m Autistic. My Aspergers is in full-swing, in all its neurodivergent glory. Rather than relying on others to figure stuff out for me, I need to take matters into my own hands, figure things out, sort them out, and keep my life operating in ways that suit me. And I generally do.

I’m bumping it up a notch, too, developing some tools I can use to better manage my life, as well as sort out the emotional stuff I’ve got going on. I’m developing a system of Dynamic Strengths Mapping (DSM for short – mwahahaha) where I have a list of my strengths and a list of my relative weaknesses, and I “map” my specific strengths and abilities to my challenges.

I’m still mulling over the exact approach. I’d thought about creating a drag-and-drop web app. But that’s not visual enough for me — too much would be hidden. Then I thought about using index cards, so I can match many discrete strengths to my complex challenges. But that seems like it could get out of hand — too big, too hard to manage — and it would be really easy to duplicate information and confuse myself. So, I’m back to the spreadsheets idea, with some color coding thrown in for good measure.

I know I’ve got challenges on a regular basis. And I need a more efficient way of handling them. This DSM approach makes a whole lot more sense to me than just marinating in my misery, making myself feel awful — just awful — because I can’t figure stuff out. That’s ridiculous. Figure stuff out is what I do best. So, it’s time to work through this, come up with a workable approach, and then share it out to others who may find it useful.

Who knows? Maybe others are already doing this. I Googled “Strengths Mapping” + autism and found a lot of different approaches, but so far nothing that’s really dynamic, like this, applying specific strengths to varying circumstances. Well, whatever. I need this tool, and others might, too.

So, I’ll build it.

And the answers will come.

If you haven’t read Odd Girl Out, you really should. And take note of the details. There’s a lot in there that can slip by, if you’re not paying attention.


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And now it’s time to report back on #OddGirlOut

Odd Girl Out cover by Laura JamesIt’s June! Hooray! What a relief. For some reason, May really got on my nerves, after a while. I suspect it’s because of all the bad press/news around Theresa May. Now I have a really bad association with “May” as a threat to all human decency and  an affront to the things that make us most capable as responsible, caring members of society. I think of “May”, and I have an experience of existential threat.

Bummer. I used to really like the month.

Oh, well.

Anyway, many weeks ago, Bluebird Books (an imprint of Pan Macmillan) sent me a review copy of Laura James’ Odd Girl OutAn Autistic Woman in a Neurotypical World. And I’ve been intermittently devouring it, alternating between frenzied highlighting sessions, when half the pages end up festooned with neatly lined-up bright yellow markings and occasional stickie notes… and taking a break to let it all sink in.

It rings a bell, so to speak. Lots of bells, actually. And while I’ve been wanting to blog about it, I really needed to get to the end, because (knowing me) I would have gone off on limitless tangents, and I’d have gotten so caught up in following a certain line of thought that I’d lose my place in the book and end up exploring other thought-world territory before I got to the end of the book.

That’s happened to me lots of times, and I didn’t want it to happen to me again. Not with something this important — and it is important. To me, as well as the rest of the world, which is frankly clueless about women on the autism spectrum.

I needed to finish the book. And I needed to think it through properly, so I could have something to say about it. Something original. Something that was mine.

So, a few days ago, while winding down from my major meltdown, I finished the book. (What better way to recover, than spending a few hours with a like-minded compadre, even if it’s just her words on a page?) Reading really calms me. It’s amazing, how much good it does my frazzled nerves. It’s always been that way – the rhythmic movement of my eyes back and forth on the page, the shapes of the letters, the feel of the words as they dance around in my conception, teasing out sensations of concepts, blending and mixing together those sensations… And of course, being able to block out the rest of the world. That’s a plus, too.

And yes, I actually finished the book, which happens a lot less than I’d like. When I came to the last page, which was finished very well, I have to say, I was left with a lot of different feelings, sensations, impressions. I’ll summarize a select few here, then dig in, in subsequent posts, about the actual content of the book. There’s a lot there I can relate to, and which is so important to discuss in a public arena.

First, it amazed me how public the author Laura James was about being autistic, seemingly from the first time she got official confirmation. I believe she was one of the first women to step forward in the UK, to show up in press and media talking about how autism affected her, and one of the first to really embrace the media. I could be wrong about this — I’m not in the UK (although my Twitter feed is populated mostly by folks from there), so I don’t know about other women coming forward and talking openly and candidly about being autistic. I mean, there have been a number of women in the states and Australia — Temple Grandin (of course), Liane Holiday Willey, Donna Williams (may she rest in peace), Rudy Simone, Sarah Hendrickx, and many others I’m either forgetting to mention or haven’t heard of (sorry if I missed you! please add names in the comments below to rectify my oversight, thanks!). But I haven’t really seen women jump into the mainstream media to talk openly and frankly about being autistic.

As a journalist, herself, Ms. James is very well positioned to do so. She’s got connections, she’s got contacts, and she’s comfortable with the public interview format. So, she’s in a great position to really stand out — for sure.

Second, I was struck by how “Aspie-fied” the book felt to me. At places, it did seem to meander off topic, following tangents that led from a personal narrative to discussing related conversations she’s had with various experts and professionals, as well as listing facts and figures about women and autism. I was a little disoriented in some places, because I was settling into a “groove” with the narrative, then we veered off in a different direction. But then it occurred to me that this is about as autistic a pattern as you could ask for, and it illustrates brilliantly how the autistic mind can work at times. We love our tangents. We love our facts and figures. We love to reference things that matter to us, even if others aren’t following. There’s nothing at all wrong with the way this book flows, when you look at it that way. And someone could likely do a pretty rich study of autistic thought process, using this as a starting point / reference..

Third, I couldn’t get over how much of the book related to me. I mean, seriously, at every turn of the page, there was something else I recognized, something else I had to highlight and wonder at. It was pretty amazing, considering that the author and I have very different lives, very different sensibilities, very different perspectives on, well, just about everything. She’s a heterosexual mother of four, working in mainstream media, traveling around regularly, with a husband and a public persona. I’m a gender-queer lesbian, working in the innards of high tech, with a partner/spouse, a home-based life with as little travel as I can arrange… and a horror of being in the public eye. She’s gone public with her diagnosis, and she’s talking it up, while I hold back from telling even my own family, because of the potential interpersonal ramifications.

For all the discrepancies between us, there was a rich, rich vein of commonality that ran through the whole book. I want to write more about those commonalities, because it’s so important — especially in light of the mindset “If you’ve met one autistic person, you’ve met one autistic person.” That outlook can leave you feeling alone and isolated and incapable of being understood by a world that’s much more interested in separating out, than drawing together. It can make you feel like a proverbial misplaced puzzle piece, and many of us know how wretched that feeling is.

We don’t have to separate ourselves out, actually. In some ways, it’s true that we’re very different. But autistic folks have so much in common, so much to share, so much that binds us to others like us (even in the face of superficial differences), that it’s critical to highlight those commonalities. To do less, would be an injustice.

And I don’t want to perpetuate that.

I’m probably going to violate the publishers’ terms (printed on the back of the book) that the uncorrected proof copy they sent me can’t be quoted… because I’ll be posting images of my highlighting, and I’ll be quoting the book in this blog. My pockets are very shallow, in terms of recouping any legal settlement, so I’m guessing suing me is going to be more trouble than it’s worth. But also, it’s critical for word to get out, even if the quotes aren’t exact (I’ll just footnote them as subject to change). It’s important that this book gets visibility, that people from all walks read it. I believe it’s every bit as pertinent to atypical autistic folks (those of all genders who don’t fit the profile of an 8-year-old white boy), as it is to straight women with a husband and kids and a professional career.

And it’s my hope that non-autistic folks will read this book and learn a little bit about how the autistic life “works”. The challenges we face, the ways we face — and overcome — those challenges. For all the suffering and difficulty we experience, there are a whole lot of ways we can use our strengths to rise above it all and make the most of the lives we’ve been given.

Odd Girl Out is an important addition to the discussion about what it means to be an autistic person in a neurotypical world.

And I only found one typo, which is pretty good, for 219 pages. 🙂

 

The meanings of autism

Neo blocking bullets with his handI could have sworn I wrote a post yesterday. But apparently, I didn’t. It must have been Monday Morning fog getting to me… That seems as likely an explanation as anything. Actually, I had a very productive Monday morning – I got a LOT done in a relatively short period of time. Exciting things are a-brewin’… percolating away on the proverbial back burner… and also taking shape.

Woo . hoo.

Anyway, about this “meaning” business… This is an unusually long post for me. Call it longform, I guess. I got started, and the ideas just kept coming… and why stop, if there’s more to come? 😉 Who knows? It may become a longer piece.

The meanings of autism

I think a lot about meaning. What it… means. To me, meaning is all about making sense of life with a cause-and-effect world view. “Meaning” is, well, a means to a cognitive end. It’s how we get from a place of not understanding something, to understanding it. It’s how we interpret a bunch of (otherwise meaningless) dots in the sky as constellations or flocks of birds. Meaning is like the line in a connect-the-dots puzzle. It takes us from a place of chaos to a place of comfort. And it soothes our existential angst — even if the meanings you assign to things are based on flawed assumptions and really bad data.

It’s like we all have this internal compass about which causes lead to which effects. We have our belief structures that tell us what’s good, what’s bad, what’s helpful, what’s harmful. What action will lead to what reaction… what we think we can reasonably expect as a reaction to a certain action or input. And if something interrupts your idea of What’s Supposed To Happen Next, well, that something can make your life seem meaningless.

For example: We all have our preconceived ideas about how a typical human life cycle is supposed to go. Our ideas are formed by our environment, the people around us, what we’ve seen happen again and again. According to many people, it goes like this:

  1. You’re born, you grow up, and you do the adult things when you get there.
  2. You get a job, maybe you get married, maybe you have kids.
  3. If you have kids, then they do roughly the same growing-up activities that you did.
  4. They get on with their own lives, and they have their own kids, who then call you “Grandma” or “Grandpa”.
  5. Eventually, you age out and … die.

If something happens to interrupt or prevent that flow of expected cause-and-effect, that event can make everything seem meaningless. The master pattern that lets you organize your relationship to the world is compromised. Ripped… torn… in some case shredded, seemingly beyond repair.

A beautiful young person in the prime of their life isn’t supposed to die while their parents are still reasonably young. Parents are not supposed to survive their children. The death of a young, vibrant person is especially jarring. They “have their whole life ahead of them”, replete with all the expectations of what that whole life is going to be like. They’ll grow up. They’ll fall in love. They’ll start a family. They’ll get a good job and a nice house, raise the kids, take vacations, and attend high school football games on Friday nights, like the rest of their neighbors. If that trajectory is cut short… it’s just meaningless. Absolutely meaningless.

Now, our estimation of the meaning of a young life interrupted can be completely different, of course — and this is me being cynical — if they’re not white, not middle class, and they live in a locale where violence and early death are commonplace. Then, in some twisted, disconnected way, the death may “make sense” to everybody outside that world. They may have decided (with the help of the media and insular cultural conditioning) that the overriding pattern of “the ghetto” is violence, drug abuse, and kids being mowed down by gunfire. So, a mother burying her child — in that context — is not meaningless for those who expect that sort of trajectory. If anything, the tragedy and injustice just reinforce the underlying meanings people have assigned to those sorts of scenarios.

But if you take a lovely young white person who’s attractive and comes from a “nice family”… subject them to the same fate as a Black young adult from challenging circumstances… then their death can easily become meaningless within the culturally expected context.

Patterns, I believe, are that the heart of our meaning-making. We identify them, left and right. We have patterns for everything. For careers. For family life. For our own individual progression through developing relationships, skill development, and physical experiences. We have templates we pattern ourselves after, and we follow the lead of others whose model we want to emulate. Those patterns “promise” us that things will turn out a certain way. If you do this, then that will happen. If you choose this, then you’ll get that result. Obey the rules, and you’ll get to be part of society. Make sure no one notices what you’re doing, and you won’t get caught or get in trouble. Go to college, and you’ll get a good job. Our patterned expectations let us get through life without having to constantly rethink things, every time we turn around. They’re cognitive shortcuts that let us function along certain lines in the world without having to “reinvent the wheel” every time we come across a novel situation.

Just follow the patterns laid out by others, and you’ll be fine. Others have been here before, and it worked out fine for them. As long as things go as expected, it all makes sense… to us, as well as to everyone else like us who shares our belief in the validity of those patterns, and uses them to make sense of the world in general.

Now that’s all very well and good. But it’s also a somewhat fraught aspect of life. Because what if someone latches onto a certain pattern that’s actually not validated by facts and real-life experience? What if someone with a budget and a marketing department decides to invent their own patterns, their own interpretations of how the world works? And then what if a gazillion other people (who may be looking for a pattern to help organize their own thinking) latch onto that… and the pattern gets propagated across a wide population, offering a fundamentally flawed framework for avoiding really thinking about stuff? Well, then you have a problem.

Then you have the Autism Industrial Complex.

Our current popular (and supposedly scientific) definitions and interpretations of autism seem to be little more than a deeply flawed set of manufactured-and-well-marketed meanings overlaying outmoded (or not-always-applicable) assumptions about the human condition. Infants are supposed to reach certain milestones in their first years. Children are supposed to talk and play a certain way. Teens are supposed to behave and develop along certain lines. Adults are supposed to be interested in certain things, behave certain ways, interact along certain lines.

And if you don’t fit in that mold, you’re a threat. Not only to the people around you who rely on your compliance to make their world feel less intimidating, but to the science and the cultural guidelines which rely on all our compliance for their ongoing authority. If you don’t fall into an acceptable range, you’re a problem.

But the real problem is the hidebound, autocratic dictates of “normalcy” which dictates what The Only Acceptable Developmental Path is for children, as well as adults. So we don’t talk by a certain time, walk by a certain time, react in certain ways, interact in certain ways… So what? Those preconceptions and (let’s admit it) artificial dictates don’t always apply to everyone all across the board, especially autistic people.

We most certainly can (and do) develop in our own ways that allow us to be quite functional in unique ways. Autistic folks have been contributing to societies and cultures since the beginning of time. You’re welcome. Yet current assumptions about what all our non-compliant development, behavior, and interests means still strikes fear in the hearts of our parents, families, healthcare providers, government agencies, educational institutions, and larger communities. We don’t fit their pattern. We don’t slot neatly into the pre-ordained compartments that we’re assigned. And our lives, our realities, our ways of being become meaningless to everyone who doesn’t understand us.

If you Google “autism meaningless“, you’ll get about 408,000 results.

Indeed, seem to come across that term “meaningless” a lot when I read about autism. It’s like there’s some phantasmagorical mystique about us that’s utterly mind-boggling, intimidating, yadda-yadda, that’s just too juicy for the mainstream to resist. We walk on our toes. We talk endlessly about a narrow range of subjects. We make strange motions with our hands. We repeat certain sounds or phrases. We don’t do small talk. We struggle with holding down jobs and dealing with the police.

We don’t fit. We don’t conform. And the rest of the non-autistic world goes on high alert. Because not only do we not fit and conform, but we challenge their most fundamental assumptions (fondly identified and sanctioned patterns) about what it means to be “human”.

Of course, it doesn’t help that leading researchers are telling the world that autism makes us less than human. That’s not helpful at all…

But our non-compliance, our meaninglessness serves a larger purpose, actually has a place in the larger world — albeit a twisted one. Our obvious differences normalize” the rest of the non-autistic world, by right of our very existence. When they call us “abnormal”, they implicitly re-validate the standards of “normalcy”. When they label us “wrong”, they reinforce their own ideas of “right”. When they declare us “disabled”, they more firmly cement in their minds what constitutes “abled”. We serve a conceptually valuable purpose for non-autistic folks, in that respect — though it’s more to their (questionable) benefit than ours.

Never mind the fallout that blankets our lives in a socio-economic version of nuclear winter. Never mind the impact on us. The dominant paradigm has been supported and validated. Woo hoo. </end sarcasm>

The reason that autism seems so “meaningless”, as I see it, is not so much that we’re stepping outside the expected range of acceptable behavior. Rather, the range of what’s expected and accepted is way too narrow for modern use. Our manufactured-and-marketed vision of what is beneficial, what is acceptable, what is harmless, has gotten pretty cramped. Insular online communities have contributed to this narrowing, allowing people to hang out with only those who think and believe as they do, who will gleefully join in with the mockery and example-making of people Not Like Them. Our meanings are exclusionary, not inclusive. Our patterns are restrictive, not expansive. Our interpretations are tied up in misconceptions, half-truths, and propaganda served up by popular media (including social media) that serve no one except those who profit from clickbait. And — let’s be honest — the world has gotten so overwhelming and dangerous for all of us, most people don’t have a ton of extra energy for thoughtfully exploring the deeper sides of life.

And that happens all across the board — whether you’re autistic or allistic… whether you’re a parent of an autistic child… or a grown-up autist with/without autistic/allistic kids of your own. Politically, people have split into factions that don’t have anything to do with each other. Neighborhoods and locales are sharply divided across socio-economic/ethnic lines. And our pattern-finding and meaning-making just harden the cement of our intransigence, as every interaction serves to confirm our biases, rather than challenge them.

All this narrowing comes at a cost. And where the Internet and globalization have promised for decades to make us more cosmopolitan, more inclusive, our non-machine aspects have yet to expand enough to usefully encompass a wider set of meanings around much of life — especially autism.

So, what do we do? What can we do? Do we ditch all our preconceived notions and wade into the morphing reality field with a completely open mind? I think not. We need some sort of structure, some sort of pattern, to order our thinking and make sense of the world. We need our frameworks to understand what we should think, how we should think, and what to do with the thoughts rattlin’ ’round in our heads. We can’t hope to take action, unless we can map an actual path to follow. If we don’t have a direction, if we don’t have a deliberate aim, we just wander in circles.

And that’s how people fall prey to the meaning-makers (like Auti$m $peak$) who offer an “official line” of thinking that’s a seemingly solid alternative to the conceptual malaise that bogs us down in all things autistic. Their official version of what the hell is up with that child/adult promises relief from confusion and fear. It seems to clearly map the cause-and-effect landscape of autism… or at least try to. They’re looking high and low for a cause. They’re chasing after a cure. Please make your tax-deductible check payable to ____________.

What organizations like that promise — with their oversimplifications, their perfunctory declarations of Eureka! interspersed with bouts of fundraising — is the thing people crave: Meaning. Sense. A way to understand the past and present, so that the future can be charted. They identify valid human needs for sense-making, and they promise to meet those needs. They don’t do it the way we autistics need them to, but that’s beside the point. They dive into the gaps between what-is and what-makes-sense, and promise to fill them, carving out a niche by defining their own set of hard-and-fast meanings and making them widely available to a populace that’s hungry for reassurance.

The thing that solidifies their position is the perception of meaningless in autism, the lack of understood neurodivergent patterns, and the misapplication of cause-and-effect thinking. They take advantage of popular ignorance, and they overlay that ignorance with a potent combination of FUD (fear, uncertainty, disinformation) and ideas that feel accessible, that seem to make sense. They tell coherent stories, they keep their accounts consistent with their party lines. And because they’re so seemingly coherent, so forceful, so convinced of their rightness, people trust them. They trust the “sense” of them, the aura, the inspiration of confidence. Parents and other people with so much on their plates really appreciate any help in understanding what’s going on with their autistic loved ones — even if that help isn’t 100% accurate. Even if they’re being lied to.

It’s really about the feels.

Ultimately, it feels to me like we’re fighting a losing battle against these forces. As long as we operate in the manufactured-and-marketed realm, the mass market of information, the consumer culture where doctored numbers are commodity for sale, we’re going to be outmatched by these people. They have the whole dog-and-pony-show “down pat”, and they speak in a way that everyday consumers can hear and appreciate. Organizations like A$, researchers at leading institutions, and everyone who’s cashing in on the Autism Industrial Complex have cornered the market. Because to them, it is a market. A means to an end — their own profit and continued agendas.

But taken individually (we’re autistic, after all), there’s more we can do that’s got real potential for some transformational change. Nobody can force us (or others) to believe something against their will — and against their sense of self-preservation. And those of us who are able, who are making sense of what autism means to us, are in a pretty enviable position. We can identify our own patterns and live them. Freely. On our own terms. We don’t have to run around with “Look at me! I’m Autistic!” t-shirts and accessories, but we can certainly live true to ourselves in our own ways — thinking independently and sharing those thoughts with others in ways that get them to stop and think.

I really believe that’s what a lot of people want — and need. Especially allistic / non-autistic folks. They’re constantly being herded in one direction or another, baited and switched, attracted and duped, treated like just another target market. And they don’t always like that. In fact, it’s often been my experience that they relish interacting with people who are free thinkers, who allow them to think freely, themselves. When I speak my mind and let others speak theirs… when I share what I love and then listen attentively as someone responds in kind… when I say out loud what a lot of people are afraid to, without expecting / demanding that everyone agree with me… well, there’s freedom in that.

So often, people turn to others for meaning. They look to the dominant paradigm, they peer out their windows to see what the neighbors are doing/buying/saying. And sometimes that may work. It may make the world seem less overwhelming, less intimidating. But in the end, I believe we’re all responsible for our own meanings, or own sense of what’s what. And I also believe that, within each of us, there burns a flame that seeks the oxygen of freedom, and it flares up a little higher, a little warmer, a little more brightly, when it encounters that freedom.

Meaning is truly in the eye of the beholder. So, rather than allowing others to define it for us, rather than accepting what’s been foisted onto others, by being true to ourselves — our deeply autistic selves — let us find our own meanings in the true details of our lives, the patterns we recognize, the progression of healthy causes and effects, as well as the lessons from choices that didn’t go well at all. And as we become stronger in our own beliefs, our own representation, our own presence in the world, our example may just help others to step out of the matrix of the manufactured-and-marketed concepts of the Autism Industrial Complex, to make up their own minds. To find their own meanings. And yes, to find a deeper humanity they can’t find anywhere but inside themselves.

The Frantic Patterns of #Autism FUDD – Fear, Uncertainty, Doubt, and Disinformation

As I discussed in my earlier post The pattern that isn’t there (for most people), detecting patterns to autistic behavior is a challenge, to begin with.

And then, when you get into a lot of FUDD (Fear, Uncertainty, Doubt, and Disinformation) that suffuses modern-day autism, it produces a confused and confounding mish-mash of different approaches, some of which may be correct, many of which may be mistaken.

Let’s start from the place where autistic individuals appear to be, for many neurotypical / allistic folks:

They can see we’ve got a bunch of different behaviors, communication approaches, oddities, idiosyncracies, and challenges (to them and to ourselves).

blue dots on a white field that have no apparent pattern to them
This is where many people perceive us to be, when they regard us as autistic – an inscrutable mystery on a blank background

If they’re “tuned in” to autism, they may pick up on the background context of our experiences and challenges. They’ll find some sort of pattern or meaning or isolated indicators they can use to try to figure us out – and figure out how to interact with or help us.

pattern of dots on a fuzzy colored "static" background
When they look closer, though an Autism lens, they can pick out specific features in the “static” around us

Now, everyone comes “fully loaded” with their own sets of preconceptions, fears, anxieties, hopes, and disinformation. And when it comes to autism, Fear is a big factor. And so is Disinformation. There’s a whole industry around both, combined with many other products and services. All kinds of stuff is said about us, which isn’t corroborated by us at all. If anything, it’s contradicted. But we’re not the highly paid experts, plus we have a “developmental disability”, so we tend to be dismissed and/or ignored and/or attacked for raising objections.

This “conceptual overlay”, if you will, makes certain aspects of autistic behavior / experience stand out more prominently than others, allowing them to perceive more granularity in the confusing array of traits we exhibit.

red and blue dots on a background of red and blue static
Some of the “signals” neurotypicals pick up more strongly than others. They seem to make more sense.

They’ve detected certain factors and elements of autism that mean more than others. Or they’ve been given information about which factors, traits, elements, behaviors mean more than others, and which they should orient to. That helps them screen out the “background noise” of seemingly unrelated, unintelligible signals we’re sending them.

red and blue dots on a white background
That conceptual filter allows folks to disregard the “static” of conflicting messages, behaviors, modes of communication we are using to get through to them, or simply live our lives effectively.

So, disregarding our “static”, using those points they pick up on as guideposts, they start to connect the dots, knowing that there are points in our experience and lives where we can find solace, peace, equanimity (indicated by the blue dots). By taking things step-by-step, addressing behaviors and traits with carefully chosen / prescribed actions, they might — just might — be able to help us (and themselves) get to those calm points of equanimity and peace.

red and blue dots connected by meandering lines on a white background
They connect the dots they think are important and that, to them, is their cypher to help them figure us out and deal with us.

The thing is, the resulting patterns can be meandering, ostensibly illogical / nonsensical approaches that are driven by half-baked information, neurotypical interpretations of autistic experiences, and “cures” or “treatments” that cost a pretty penny but serve no one but their inventors.

red and blue dots connected by meandering lines on a field of red and blue static
But to us autistic folks, their confusion still remains. It’s still there, clouding the issues, even though they don’t think it is.

What we have in the end, for the helpers, advocates, and others on the outside looking in, is a wildly meandering, sometimes haphazard, shot-in-the-dark mish-mash of approaches driven by fear, uncertainty, doubt, and disinformation.

There is no discernible pattern to behold. There is only the equivalent of flailing around in all directions, looking for whatever will work at that moment — or whatever someone else promises will work.

Beneath the wide-ranging, far-flung approaches, there lies a pattern. But it’s invisible to those who apply only their own standards and/or who look to others outside the autism spectrum to supply a template for understanding.

This is not a studied, careful approach. And it comes nowhere near revealing the real patterns of our lives. But because it offers some course of action — which anxious, fearful individuals crave to relieve their very real suffering — it gives them a sense that they’re doing something.

And sometimes that sense is enough.

For them, that is.

Not for us.