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

Loomes paper wordcloud

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

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

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

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

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

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

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

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

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

What? Me autistic?! How could that be?

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

So… earplugs.

But enough of my digression. Back to topic…

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

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

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

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

. . .

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

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

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

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

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

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

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

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

Chronic pain? Stop complaining. Everybody has pain.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Embracing the rigour of the #autistic life*

Every day is strenuous for me. I’m constantly testing and pushing myself. Does that make me disabled? I don’t think so. It makes me different in ways that are more demanding than the average person experiences.
Every day is strenuous for me. I’m constantly testing and pushing myself. Does that make me disabled? I don’t think so. It makes me different in ways that are more demanding than the average person experiences. – Quote from The #autistic medical model makes me sick

* Note: I’ve spelled “rigor” with a “u” (British spelling) because it actually feels more rigourous 😉 Ha ha! Just having a little semantic fun on a Friday.

This is another one of those dog-tired days, when my mind is spinning and I have no idea how I’m going to get through the day. I’ll get through it, of course. It’s what I do. But in one piece? In a good frame of mind? I dunno.

I have to deliberately remind myself of the fact that I’m tired, because I tend to lose sight of that. I get so tired, I can’t figure stuff out — including what sorts of emotions I’m having, and what I should do about them. I get physical weariness confused with depression and low self-esteem. It probably sounds strange, but a lot of different emotions feel like each other to me, so I have to sort them out logically, scientifically, objectively, in order to not get dragged down into an emotional hole. Once I figure out what the emotions are really about, I can get on with my life without quite as much suffering.

Come to think of it, I think that’s why blogging helps me so much. It helps me sort out my emotions — literally — and figure out how I’m truly feeling.

Anyway… I’ve had a heavy week of peopling, and it’s taken a toll. I had a lot of meetings, some of which felt like utter failures, but which were actually okay. Nobody seemed as horrified by my performance as I was. They all seemed to think everything was fine, while I was convinced I was careening towards disaster. I know where the disconnect is happening. My emotions are getting jumbled up, and I don’t have the presence of mind to sort them out, sometimes. I haven’t yet gotten back in good shape from my business trip, last week… and last night, it felt like the whole world was falling down around me. I just wanted to crawl into a hole and leave everything behind. I really wanted everything to just end. My marriage. My job. My mortgage. I wanted to take the money I’ve saved, get in my car, and keep driving till I didn’t recognize anything around me.

Start fresh. Leave all the overwhelming and inescapable responsibilities in my rear-view mirror. Literally. Stop it all. Just stop. And start fresh. Run away! Run away!

Run away! Run away!
Run away! Run away!

I knew I was tired… logically, I knew it. But the whole alexithymia thing was dragging on me (as it often does). I knew I’d had a highly interactive week. And I also knew that I had fallen behind in a lot of my work. But I was really unclear about how I was supposed to feel about that. Was I supposed to be proud of myself for making it through at all, or frustrated with myself for not doing everything I’d intended to? Was I supposed to be depressed because I didn’t live up to my promises, and I’m putting my team and projects at risk? I wasn’t clear about all the stuff I’d actually gotten right — it just felt like everything was wrong. Again, emotional confusion based on my physical state… bone-tired weariness….

And now I can’t find my power cord for my work laptop. That’s unfortunate. I’m working from home today, and I’ll need to plug in. For a while, at least.

Well, I always have my mobile phone to use in a pinch. I can do just about everything I need to do on that device. I’ll just be judicious with how I spend my power. And I’ll order a new power cord from facilities.

Or, I’ll drive to the office and get the cord I have there — no, come to think of it, I’m not doing that.

But I digress. I started out wanting to write about how an autistic life is a rigourous life, by its very nature. In my piece about how the autistic “medical model” makes me sick, I talk about how just because autism can be demanding — even depleting — that doesn’t make it wrong or disordered, in and of itself. It’s demanding, yes. But it also has a whole lot of advantages, and I wouldn’t trade it for the world.

Wanting to “cure” autism, in my mind, is like wanting to cure fair skinned people who live in sunny climates. Should “ginger” folks who burn at the slightest exposure to the sun be forced to expose themselves to sunlight without any skin protection so they can get used to the UV rays. That’s never going to work. We all know that. It’s just going to harm them. Burn them. Make them miserable. Possibly give them cancer, eventually.

Or another analogy: forcing kids who are allergic to nuts to eat peanuts, so they “get used to” them, and refusing to give them a shot to counteract the anaphylactic shock. That makes no sense. No parent in their right mind would do that to a child they love, and countless schools jump through all kinds of hoops to keep allergic kids away from nuts. But they won’t make accommodations for autistic kids who are suffering — often (like me, once upon a time) in silence.

“Exposure therapy” for autistic people is a ridiculous concept. And yet that’s what autistic people are expected to pursue — “suck it up” and just get used to the equivalent of burning sunlight on fair skin… or metaphorically eat a handful of peanuts (with no Epi-pen in sight), to acclimate their bodies to the substances that make them swell up in life-threatening ways.

It’s absolutely pointless. And it’s counter-productive in many ways. Accepting that an autistic life is an exceptional life, which requires greater rigour than the neurotypical mainstream way of life, is — to my mind — core and critical to understanding autism, in the first place. And that acceptance needs to happen on two fronts — 1) with the autistic individual (who probably already knows it), and 2) in the broader world outside, which has a lot to learn about how to A) stop hurting us, and 2) make the most of our talents and abilities.

See, it’s not easy accommodating us. It’s not easy getting accommodations in the first place. In my case, alexithymia keeps me from seeing and sensing clearly what I actually want and need. I literally do not know, at times, just what that is. And then I need to figure out how to express those wants/needs in a way that makes sense to neurotypical folks. It’s not easy. And I often just “bag it” — leave myself and my own wishes/needs out of the equation, so I can live my life more simply. Once I get what I ask for, I then need to navigate using it properly and managing the situation to make sure I’ve gotten it right. Hm. That’s certainly not easy! And I need to give feedback to people about whether I’m all set or not — yet another challenge.

For the rest of the world, it’s even more confusing. They don’t understand how I function, they don’t understand what I need or why I need it. And they often don’t know whether things are working as desired.

Fer-example: People I work with don’t understand why I sequester myself in my cubicle, more often than not. They think I should be socializing with them, chatting for extended periods of time about this, that ‘n’ the other thing. They don’t seem to understand why I wander off when I’m overwhelmed, and they don’t get why I sometimes chase them out of my cube. They don’t understand why I’m not a big fan of going to loud, busy bars after work to socialize and eat food I shouldn’t be eating, surrounded by people who are drinking things I dare not drink. I’ve tried to explain, but it falls on deaf ears. I’m in the minority. My job is to “catch up” with the rest and conform. For the sake of the team.

My boss seems particularly mystified by me, even though I’d bet good money on the chance he’s on the autism spectrum, himself. He’s got a very Aspie-fied approach to understanding people, and social interactions seems to be his #1 area of specialized focus. He makes the effort to include me, to get me involved in things, then he’s confused when I’m not all whoop-dee-doo! about participating in things like business trips to Las Vegas, or wading into receptions and social “mixers” with complete strangers.

The thing is — and this is what I think gets lost in the whole autism accommodations discussion — when I (and others) are provided the different circumstances we need, in order to be at my/our best, the results far, far outweigh the costs, in terms of overall value/expense. There’s a massive “ROI” on letting me (and others like me) function the way that best suits my/our autistic nature.

That’s why the general concept of “accommodations” kind of irritates me. It’s too disability oriented for my taste. It feels like it’s all about managing deficits, preventing meltdowns, and doing the equivalent of replacing all the divots on the golf course, so somebody else can play through without disruption. It feels to me like it’s too much about avoiding disaster, and not enough about making possible the amazing, remarkable, unique results we can provide… if we’re just allowed.

Yes, autistic folks DO have issues with environmental aspects that are best avoided/mitigated. Yes, we DO suffer terribly, when we’re not accommodated and we’re forced to “suck it up” and just power through. The thing is, when we live and operate in a world that is exactly the way we need it to be, amazing things can happen. I’m not just talking about inventions and discoveries and cultural creations that move the human race forward. I’m talking about an extraordinary quality of life and humanity that can emerge to widen the understanding of what it means to be human, what it means to have a soul.

There are plenty of autistic people who don’t seem to have any particular skill or talent that sets them apart from the neurotypical crowd. And those people have value, as well. The ones who have learning difficulties or disabilities. The ones whose IQ scores are lower than expected. The ones whose burning passion is a select class of inanimate objects that most people don’t give a second thought to. And then there are the ones who have no burning passion at all, who don’t know what they’re feeling about anything, who feel no joy or elation, who frankly don’t know why they’re even here. Those autistic people have value, too — in ways that very few people can understand, but still matter. Very much so.

Autism is by its very nature rigourous. And when you accept that, welcome it, even embrace it, you’ve got yourself a pretty interesting life, I have to say. For me, the rigour happens every day. And by the end of it all, I’m wiped. Just done. By the end of a work week, I sometimes don’t even know my own name or recognize myself in the mirror. But I pull myself together and keep going, regardless of whether or not I’m on good terms with my reflection.

Because there is work to do. And I choose to do it.

For today, I won’t withdraw all my savings from the bank, hop in my car, and drive away to leave it all behind. There’s a good chance I won’t do that tomorrow, either. Or the next day or the next day or the next… It’s enough to recognize that that’s what I’d absolutely love to do, because this life-ing stuff isn’t easy. It’s rough-and-tumble, and it hurts like hell, sometimes. But that’s the deal. Joy and pain. Sunshine and rain. It’s all part of it, and yeah, it’s worth the trouble. Every bit of it.

Autistic rigour. I wouldn’t have it any other way.

An open letter to my former early grade school teachers 

Amen to this, sister. Amen.

the silent wave

Dear elementary school teachers of my early years,

The first thing you should know is that I remember you. I remember all of you. I remember your names and faces. I remember the essence of your voices, even.

And I remember how you felt toward me and how I felt toward you.

When I was 19, I came back to the same area for university, and I made the trip to the school, to see as many of you as I could find.

I don’t remember why I was so nervous, but I do remember that the nervousness was mixed in with a sort of triumph. Because I’m not sure you ever thought I’d amount to much. And I did. I showed you. I proved you wrong. I turned myself around, academically.

When I was in your class, you saw part of me. You saw my potential. But you didn’t…

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Otherwise (autistically) engaged

broken window looking out at sky
Beyond the break, there is wide open freedom.

It’s Thursday. I’m tired. No, more than that. I’m exhausted. Dragging. Dulled down in a very uncomfortable way for me. I hate this. But there’s no escaping it, so I might as well make the best of it.

It’s going to take a while for me to recover from my business trip last week, And I’m not happy about it. Being this tired makes it hard for me to stick with my routine, but of course I need to do that. So I modify it somewhat. I shorten my work out. I spend less time on things like preparing and eating my breakfast. I set lower expectations for myself at work.

Work has been extremely demanding for me, lately, and I’m not happy about that. I keep falling behind in things, and that makes me incredibly uncomfortable. But then I realize that everyone is falling behind in their work, so that’s some small comfort. Even if I have a really hard time with it, I’m surrounded by people who still support me, who struggle with the same sorts of issues, and who aren’t about to chase me out the door because of it.

All in all, I really do like my job a lot. It’s just exhausting. I’m wiped out by Wednesday afternoon, and then I’m pretty much of a zombie for the last two days of the week. That’s where I am today. Fortunately, I can work from home tomorrow, and I can take a nap in the afternoon, which will be a help.

I don’t mind the challenge of my job. I welcome it. I could just do without the exhaustion. I think I’d enjoy it so much more if I could just stay rested.

The one thing that would change everything for the better, is being able to take a nap mid-day. If I could only lie down for an hour, each afternoon, I would be so much more productive. And I need to do that every single day, so I don’t fall behind.

I have talked to people about my trouble sleeping, and they have all encouraged me – even urged me in the strongest of terms – to not disrupt my sleep-wake cycles with naps, because supposedly that will throw off my circadian rhythm. But these people clearly have no idea how exhausted I am by the end of the day, and they don’t know what it’s like to have that cumulative effect of one exhausting day after another.

I’ve been thinking a fair amount, lately, about how I engage with the world. There of been a lot of conversations on Twitter, lately, about eye contact – and I shared a paper, recently, that pretty much says what we already know, albeit in scientific terms and with data to back it up. Also, people are talking about memory, and why we as autistic people remember things differently. My head is spinning with all these great ideas, and stuff is “gelling” in my head… just in chunky form. I’m sure there’s a common theme there… somewhere…

My understanding of memory is that it is a complex thing which is made up of a number of different components. In order to have a memory, first you have to create it. Certain parts of your brain have to be engaged to really make it salient – to make it stick. And then, you need to be able to retrieve it.

That might be why so much of my prior life is a blank. I’m otherwise engaged in the world around me, and I’m noticing things on a much more detailed level, than those big “meta” concepts and experiences.

I can’t speak for anybody else, but when I am in the thick of a situation that is innately challenging / hostile to my autistic character, I spend more brain and body cycles on navigating all of the sensory details and trying to sort through what it all means, rather than making specific memories about specific things. If somebody is talking to me about something I’m not particularly interested in, or I’m stuck doing something I don’t like, that also has an effect. I won’t necessarily invest the brainpower and really experiencing that fully enough to make any sort of enduring memory. Maybe it’s sticks, maybe it doesn’t, but there’s really no guarantee of anything.

And if someone is interacting with me or I’m experiencing life in a way that is completely overwhelming to me – someone is wearing too much perfume, the lights are too bright, the temperature is not hospitable, there’s a lot of background noise, someone feels the need to keep reaching out to touch me… or any number of other sensory inputs or intruding on my attention – there’s a slim chance that I will retain that in my memory banks. Detailed memory is probably not going to happen.

So, where does that leave me? I have huge gaps in my recollections about what went on in my life in the past days, months, and years. My family typically start conversations with me with a question “Do you remember…” and as often as not, my answer is, “No.”

I’m not sure anybody outside my head – except for the autistic folks who read this and my friends on Twitter – fully understands this phenomenon. I’m so busy parsing everything around me, that I can’t really engage fully with what’s in front of me.

Then again, I am engaged. I am involved. It might not be with the same things that everybody around me is engaged in, and I might not be making the same sorts of memories as the people around me, but I am engaged. Chances are, I am wrapped up in my own thoughts, parsing through data which I find a heck of a lot more compelling than what’s happening right in front of me, or I’m thinking about things in a completely different way than most people around me.

That’s really my strength – and when it works out – especially when I’m not exhausted. It’s a thing of beauty. I can live and interact in a world filled with people completely unlike me, and still bring my own unique perspective to the situations we are in. I can find profound joy and relief in my own particular interests, even while the rest of the world is operating in some parallel universe. They have their space, I have mine.

Somehow, I’ve figured out how to make peace with that — and make my differences work for me. I’ve adopted a persona, which I have refined over the course of decades, which works in social situations. I’ve developed a role – a performative mantle if you will – which secures a place for me in social situations. Neurotypical people seem to be comfortable with roles and performance of specific behaviors. So I’ve figured out how to do that in a way that is positive, constructive, and true to myself. Am I masking? Of course! Am I camouflaging? Of course! Everybody is, in the neurotypical world, and I think that’s something that autistic people tend to lose sight of – if we have sight of it at all, to begin with.

It’s a careful balance, of course. Balancing performance with actual essence, meeting the social requirements that will keep me out of trouble… along with being true to myself. Engaging with the world on my terms – albeit while making concessions to the larger whole. It’s not easy. And sometimes it’s not fun. And it’s exhausting. But there are enough rewards that it’s worth it for me.

I may be otherwise occupied while the rest of the world spins around me, but I am still engaged.

Sharing : The Autism Definition Debate – Language Matters

Autistic individuals share a neurological type, which is qualitatively different to that of non-autistics, and which will necessarily impact, both positively and negatively, on aspects of their thinking and learning; sensory processing; social relational experiences; and communicative style, abilities and preferences. An autistic person’s experience of and ability to be successful in the world, will be dependent on the closeness of compatibility, between their individual profile of skills and requirements and their physical and social environment. Levels of sensitivity to environmental factors vary between individuals, and within the same individual over time, so that the presentation of autism is ever changing. A person’s neurological type, however, remains constant, and being autistic is a lifelong identity (Leatherland, 2017).
Quote reads: Autistic individuals share a neurological type, which is qualitatively different to that of non-autistics, and which will necessarily impact, both positively and negatively, on aspects of their thinking and learning; sensory processing; social relational experiences; and communicative style, abilities and preferences. An autistic person’s experience of and ability to be successful in the world, will be dependent on the closeness of compatibility, between their individual profile of skills and requirements and their physical and social environment. Levels of sensitivity to environmental factors vary between individuals, and within the same individual over time, so that the presentation of autism is ever changing. A person’s neurological type, however, remains constant, and being autistic is a lifelong identity (Leatherland, 2017).

Here’s another great contribution by Luke Beardon (and others) — The Autism Definition Debate – Language Matters

Education is all about teaching and learning. Well, it should be all about teaching and learning, however, for all teachers to teach and all learners to learn, it must also be about equality of access. From my perspective, as a member of The Autism Centre, equality of access, through the genuine inclusion of autistic students – which sometimes means adaptation, and sometimes means making reasonable adjustments under the Equality Act – always means that practice should be based on a good understanding – not necessarily of autism per se, but of how autism impacts on the student, within his or her own specific environment, at any given time.

But where is the starting point for all this understanding? What are the building blocks upon which to develop educators’ understanding, which might lead to good teaching and successful learning, and reduce risk of inequality for autistic learners?

Read the full piece — The Autism Definition Debate – Language Matters

Sharing: Look me in the eyes: constraining gaze in the eye-region provokes abnormally high subcortical activation in #autism | Scientific Reports

woman looking away
Just because I’m not making eye contact, doesn’t mean I’m not listening, not attending

Oh, this is good… Just heard about this via Twitter:

Abstract

Individuals with Autism Spectrum Disorder (ASD) seem to have difficulties looking others in the eyes, but the substrate for this behavior is not well understood. The subcortical pathway, which consists of superior colliculus, pulvinar nucleus of the thalamus, and amygdala, enables rapid and automatic face processing. A specific component of this pathway – i.e., the amygdala – has been shown to be abnormally activated in paradigms where individuals had to specifically attend to the eye-region; however, a direct examination of the effect of manipulating the gaze to the eye-regions on all the components of the subcortical system altogether has never been performed. The subcortical system is particularly important as it shapes the functional specialization of the face-processing cortex during development. Using functional MRI, we investigated the effect of constraining gaze in the eye-region during dynamic emotional face perception in groups of participants with ASD and typical controls. We computed differences in activation in the subcortical face processing system (superior colliculus, pulvinar nucleus of the thalamus and amygdala) for the same stimuli seen freely or with the gaze constrained in the eye-region. Our results show that when constrained to look in the eyes, individuals with ASD show abnormally high activation in the subcortical system, which may be at the basis of their eye avoidance in daily life.

Read the full paper here (open access – woo hoo!): Look me in the eyes: constraining gaze in the eye-region provokes abnormally high subcortical activation in autism | Scientific Reports

For I am human #autism

Yes to this. Very much so.

The other side

Photo on 20-06-2017 at 16.01 #2For I am human.  (A radical statement to some.) 

And I am capable of every human emotion.

Even as I wake some days I am surprised to find this as truth. For I am othered in the collective consciousness which envelops us all.

I have for all of my years, until the last, swallowed my othering whole, so that I did not know myself as myself at all.

Confronted with myself – I found myself a stranger all the more.

But as time eeks out its knowingness I no longer falter, for I find that I am myself (of course I am) and always was that self buried under a false persona.

Stepping out from under it was like tearing off my shadow.

A false persona melded onto a true heart? Yes – I think so. Yes.

A not unsmall quake of tectonic plates.

Now settling. Becoming.

All humans…

View original post 89 more words

Sharing : Rethinking Autism: From Social Awkwardness to Social Creativity

Instead of viewing people with ASD as “socially awkward” individuals who need to be “fixed,” we should instead conceptualize them as socially creative. They may not do things the “right” way, but they do them their way.

Read the rest of this great article here

The #autistic medical model makes me sick

iceberg floating in water
There’s more to my autistic self and experience than the medical model can conceptualize

Note: This piece is about me — and only me — it’s my deeply considered opinion, based on my own personal experience of inhabiting this planet for over half a century. You’re free to believe whatever you like about the true nature of autism. But this is my stance (right now). If you disagree, write a better blog post and tell me about it. 🙂

Lately, I’ve come across a number of bloggers talking about how autism is more than just a “difference” for them. It’s a genuine disability. They suffer from it. They have family members who appear to suffer intensely from it. Autism is the source of tremendous pain and struggle for them and their loved-ones, and there is no way they’re ever going to sanction autism as a “difference”. It’s too disruptive a force in their lives, for that to ever happen.

I also had a brief exchange with someone last week who actively embraces the idea of autism as a disability, and they align themselves with the disability rights movement. They have the best of intentions, I believe, and from a philosophical point of view, I can agree with the value in doing that.

There are a lot of autistic people who are disabled. There’s a whole lot they cannot do, and my never be able to do, because of their issues and traits. I know a handful of autistic folks who wouldn’t last a day in the working world I inhabit. I’ve also known some autistic folks who do extremely well in my work environment, but struggled terribly with other issues.  Autism is no joking matter, when things are at their worst. I’ve been through the proverbial “wringer” many times, myself, and I have to continually make conscious choices for or against things, because of the effect I know they’ll have on me.

One day, I can be completely laid out by my issues. The next, those very same issues lift me to sublime heights. If I remove the causes of my pain, I remove the source of so much inspiration. It’s all a matter of degrees with me.

For the record, I don’t consider myself disabled. Yes, autism can be a disabling influence in my life, but its effects are temporary and mutable. It’s like being a sprinter who has to run a marathon, every single day of my life. My routine exhaustion and need to remove myself and recharge (lest I begin to implode from overwhelm and sensory overload) is conceptually no different for me than the results of a strenuous workout. Every day is strenuous for me. I’m constantly testing and pushing myself. Does that make me disabled? I don’t think so. It makes me different in ways that are more demanding than the average person experiences.

Is a thoroughbred racing horse disabled, because it can’t eat the same types of grains as other horses? Because it is so high-strung and hypersensitive that it develops inexplicable white spots on its legs? Is it disabled, because it’s temperamental and prone to outbursts? No. It’s a thoroughbred. It’s a unique and different kind of horse, and when it’s allowed to do what it does best, you’d never ask it to be anything different.

And I come back to it again, is autism itself THE disabling thing?

I’m not so sure. I mean, being autistic predisposes me to overwhelm, hyper-sensitive pain and discomfort, as well as the occasional meltdown/shutdown. Much like having fair skin predisposes you to getting sunburned, if you don’t use sunscreen. In the case of fair skin, the solution is not to change your skin, add more melatonin, or convince yourself the sunburn doesn’t really hurt. It’s to take steps to avoid sunburn.

And that’s where I see the medical model of autism going afoul of my autistic person. According to the medical model, autism itself (or in the above example, fair skin) is the root of the problem, and it needs to be eradicated. It’s a disorder. It’s a dysfunction. It’s an aberration that — for the sake of smoother functioning of society — needs to be changed in some way, if not gotten rid of entirely.

Classifying autism as a diagnosable disorder (and I’ll freely admit, the idea of diagnosis appeals to me, not because of the medical overtones, but because of the science — Science!cue Thomas Dolby) makes it a “thing” that needs to be fixed, that needs to be addressed. It removes it from me, as a person, and turns it into the cognitive-behavioral equivalent of a tumor, a mass, a growth of some kind. Maybe the “mass” is benign, for the most part. Maybe it just causes occasional discomfort. Or maybe it impinges on nerves and causes me unspeakable pain. In any case, it’s something separate and apart from me that arises from a physical cause and is addressed as a distinct (but disposable) aspect of my life experience. According to modern medicine, this condition, this disorder can (and should) be treated.

The thing is, it’s all more complicated than that. Yes, my body is differently “tuned”. Yes, there are experiences that others take for granted, which are unbearable to me. Yes, there are many aspects of my life which are physiologically uncomfortable, even painful, and depending on my state of body and mind, those aspects may be more or less extreme. But is a physical/medical approach the one and only approach I should take, when it comes to managing my situation?

Is changing the essential makeup of fair skin the only way to avoid sunburn?

Obviously (to me, anyway), there’s more to it. There should be more to it. Because what parts of life are ever that simple? Few, if any.

There’s the whole environmental thing. And the whole social thing. And the whole accommodations thing. And the whole pro-active self-care thing. There’s me taking care of myself, and there’s having other people to help watch out for me.  There’s my diet, there’s my exercise, there’s my social circle (or lack thereof). There’s my inner state, my outer circumstances, my interactions with the world around me… That all comes into play in an intricately interconnected dance, so that I cannot possibly ascribe to only the medical model as a way to explain and address my autistic experience(s).

It’s all very well and good to seek physiological explanations for why things are like they are with me. I tend to turn to biochemistry and neurobiology for explanations about why people behave like they do, and in some cases, they offer greater clarity. Certainly more quantifiable data.

But to look at those quantifiable data in and of themselves, with no connection to the outside world and the artificially created circumstances… that’s just asking for trouble.

Because then the problem originates in my system. It says there’s something wrong with ME, my physiology, my own personal context. It seems to absolve the outside world of any kind of credit or culpability and treats my system as a self-contained, hermetically sealed entity that has a mind of its own and does what it pleases… just ’cause it feels like messing with me.

To overlook the effects of environment, as well as human-made complications and challenges, does my physiology a disservice. It makes it sick. It makes ME sick. It makes us out to be disordered, in and of ourselves, rather than in relation to hostile circumstances.

Expecting me to just motor through life, carefree and happy-go-lucky, regardless of extenuating conditions is like, well, expecting a fair-skinned individual to walk across the Kalahari Desert without any cover-up or sunscreen, and not be sunburned. It’s like running a thoroughbred hard, putting them up wet, and then repeating the process again the next day — or that very same afternoon — and doing it again. And again.

So, that’s my “take” on the medical model, as it applies to me. I’m sure I’ve missed some important nuances, and I am probably over-simplifying things, here and there. Or maybe I haven’t, and I’m spot on, all across the board.

Bottom line: the medical model may work for some things. But my autistic nature and experience? Nope. Doesn’t do the job on its own.

And I’m sick and tired of being treated like I’m sick and it’s all my (and my autism’s) fault.

More data about #autistic identity and person language

10 Year Totals Ifl Pfl Spectrum Google Scholar (No Citations)
10 Year Totals Ifl Pfl Spectrum Google Scholar (No Citations)

So, I changed up how I’m looking at the data on identity-first (“autistic”) vs. person-first (“with autism”) language. And I’ve added in some data for what I consider neutral language — “on the autism/autistic spectrum”. It seemed more accurate to me, to include that, so here’s what I found after a number of hours, yesterday.

10 Year References Ifl Pfl Spectrum Google Scholar (No Citations)
10 Year References Ifl Pfl Spectrum Google Scholar (No Citations)

Above. you can see the overall percentages of terminology, relative to each other. References to “with autism” (PFL) far outweigh references to being autistic or being on the spectrum. This is a review of scholarly literature, so that’s to be expected, I suppose.

10 Year References Ifl Pfl Spectrum Google Scholar (No Citations)
10 Year References Ifl Pfl Spectrum Google Scholar (No Citations)

Above, you can see the overall trends in terminology. I find it interesting that the “with autism” dropped around 2013, while “autistic” seemed to jump a bit. Aspergers references dropped slightly, after a minor surge in 2013 — probably because it was deprecated and removed from the DSM-V in 2013. References to Aspergers may have been replaced by references to “autistic”.

10 Year References Ifl Pfl Spectrum Google Scholar (No Citations)
10 Year References Ifl Pfl Spectrum Google Scholar (No Citations)

I like the line chart above, because it shows the rise in “with autism” language. I may go back to the timeframe before and after the legislative appeal to use person-first language. I suspect it would show some interesting results. Maybe another day. Or week. Collecting this data takes time. Plus, Google Scholar was blocking me, because my very efficient link generator apparently set off some alarms about me being a bot.

Ha – if only…

10 Year Totals Ifl Pfl Neutral Google Scholar (No Citations)
10 Year Totals Ifl Pfl Neutral Google Scholar (No Citations)

I also looked at overall trends of PFL (“with autism”, “with Asperger’s Syndrome”, etc), IFL (“autistic” sans the references to “spectrum”), as well as neutral language (“on the autism spectrum”). There seems to have been a surge in neutral language from 2013 on, I guess when people couldn’t refer to Aspergers anymore, but they maybe didn’t want to call people “autistic” because of the ramifications or perception of it being a slur.

10 Year Totals Ifl Pfl Neutral Google Scholar (No Citations)
10 Year Totals Ifl Pfl Neutral Google Scholar (No Citations)

Here’s another look at that data, which shows the overall amount of talk about us. I find it so interesting that all this research as more than doubled in the past 10 years… as well as looking at how researchers refer to people like me. I believe there’s more research being done on what different areas are being researched, but I don’t have insight into that initiative.

Now that I have numbers I’m happy with — had to back up and rethink things, when my results were looking questionable — I can start digging into this some more. We all feel differently about how we’re referred to, and what we’re called — I just find it so interesting to study the people studying me and others like me, to get some insight into what they’re actually up to, how they conceptualize people like me, and exploring ways that we might actually address inequities and injustices which are sometimes unintended consequences of science.

It’s all so very interesting…