Weight loss is not all daffodils and butterflies
Autism figures into much of this but let’s remove that from the equation for the moment and just talk about body dysmorphia in relation to body transformation in general. (I promise I’ll loop back into autism before it’s over.) BDD or Body dysmorphic disorder, as it is officially known, is an “obsessive preoccupation that some aspect of one’s own appearance is severely flawed and warrants exceptional measures to hide or fix it.” A more useful definition of BDD for the context of body transformation is that a person’s perception of their own body is out of sync with the reality. That encompasses conventional cases such as someone believing that their ears are too big as well as someone whose body changes dramatically to no longer conform to the person’s self-image. Both constitute a mismatch between perception and reality.

For example, suppose that a person loses a limb in an accident. Phantom pains are a common complaint after such injuries and they can be debilitating. Conventional wisdom held for many years that such pains were the result of nerve damage and the usual treatment was successive encroachment on the amputation in hopes that a clean cut of the nerve in an undamaged area would resolve the pain. In this way many unfortunate sufferers who began with a minimal amputation saw their remaining limb successively reduced to a stub in an effort to relieve the phantom pains.

In his groundbreaking work with phantom limb sufferers, V.S. Ramachandran discovered that many such cases were actually a form of BDD in which the patient’s brain had not caught up to the fact that a limb was missing.  The remaining nerves transmitted sensations that the brain interpreted as pain that was located in the missing limb. Ramachandran was able to successfully treat phantom limb pain through the use of a mirror box that gave the patient the visual impression that their body was intact. When confronted with this image, the patient’s subconscious began to interpret the new sensory input as normal instead of as painful. Some patients saw immediate improvement and many were completely cured after several sessions.

Jason Young in 2013
after loosing 13 stone
(~ 182 lbs)

Though not as sudden, massive weight loss also throws a person’s perception of their own body out of sync with reality. We all come to understand our personal limitations and after massive weight loss these change. Contrary to popular belief, it’s not always for the better either. In my case I became very cold sensitive. Sitting or lying down became uncomfortable when bones and joints that had previously been well padded were now directly bearing contact pressure. Foods tasted differently. My heart rate and blood pressure actually went too low, even after stopping all the meds, because all the systems in my body got thrown out of whack. The biggest thing though was large skin folds hanging from my arms, chest, waist, and thighs that were both painful and unsightly. Stop looking for “some aspect of one’s own appearance is severely flawed and warrants exceptional measures to hide or fix it,” we have a winner.

Jason Young pictured at right was brave enough to allow post weight loss photos to be published in the UK’s Daily Mail. His excess skin was estimated at 4 stone (~56 lbs) and was causing severe back pain. The psychological impact isn’t discussed in depth in the accompanying article other than to say that Jason eventually became suicidal, a side effect we have in common.

Smiling “after” photo.
Skin folds not included.

To the right is also my own “after” photo. What isn’t apparent in my photo is that my hanging skin was even worse than Jason’s, since I lost about the same amount of weight but am much shorter. Note that despite dropping from size 50 pants to 36, you still can’t see my belt buckle. Much of the excess skin is hidden under the pants but there was so much that some of it overflowed into, and is contained by, the shirt.  Had I worn the shirt untucked, the skin would have hung below the shirt tails.  The other thing you can’t see in the still photo is that all that loose skin pooled in the front of the shirt would be in constant motion while I walked and taking the stairs was painful.

Our consciousness, our identities, the entity we think of as “me,” are phenomena that emerge from the complex systems of our brains. A very large perturbation in those complex systems–death of a loved one, changing jobs, significant body transformation–cascades into every aspect of what makes us who we are and it changes us in ways we don’t predict.  Lose a parent, lose a limb, lose a job, and everyone expects these events to be traumatic. Lose a lot of weight and many, like my commentor, see only an “amazing success” despite that this changes in ways that are at once profound and unexpected that person’s self-image and how they are perceived by others.

For someone living with massive weight loss the reality is that although many things are better, many things are also worse and the sheer amount of things that are different can be overwhelming in itself. Ask a fat person what its like to be fat and you are likely to hear that people are mean and predjudiced. It’s a bit like asking a fish to describe water.  Ask a skinny person who used to be fat what it was like and you will hear a hundred different ways in which obesity had influenced relationships and physical interactions in the world that were revealed only by their absence. And, like a fish out of water, strategies and behaviors accumulated over a lifetime of obesity suddenly don’t work as well.

Friends and family seeing the smiling, fully clothed after photo ten to assume that you are the exact same person in every way, but with some improvements. It is not intuitive that the massive weight loss has brought with it a raft of sensory issues, the need to re-learn how to interact with others, an identity crisis, an obsessive need to hide all the the hanging skin, physical discomfort, and even the “uncanny valley” feeling when seeing yourself in the mirror. Losing a loved one or a job are external events and people readily accept these as traumatic things that change us. Losing your own sense of who you are and how you fit, figuratively and literally, into the world rocks you to the core, but what most people see and expect is that this change represents unqualified success.

Just because a body transformation is elective, doesn’t mean it is not traumatic.
The best outcome you can hope for is that, in your own case,
the benefits outweigh the downside enough to make it worth while.
Successfully losing weight doesn’t mean it works out that way.

I promised to bring this back to autism and one of my autistic co-morbidities is a thing called misproprioception. Basically, it means that your body parts are not quite where their sensory input reports them to be. It is one of many causes for clumsiness. It can present as being accident prone. With regard to personal relationships it can mean the difference between caressing someone’s cheek versus poking them in the eye while trying to caress their cheek.

It was bad enough when my brain and my body were in sync. After losing weight my physical sensations were displaced by circumference, and frequently also vertical height when the sensation originated on or near the excess skin.  So for example if I leaned into a counter I would perceive it as being much higher than it was and had a tendency to topple onto it or spill drinks and food when it turned out to be much lower. I very quickly had to develop a discipline to move slowly and deliberately, not to trust my body to report things accurately, and to touch-check before setting anything down.

Someone who can take these things for granted might assume it’s a simple matter of adjusting like when you get a new pair of glasses. But there’s a huge difference between a tool like a pair of glasses gives unexpected feedback versus the surreal feeling of your own internal senses misreporting your environment, like being on an acid trip that never stops. Which, in isolation might be manageable but all this is happening at the same time all the people in the world start treating you differently.

No single one of these issues is easily or quickly resolved. Nor can they be considered in isolation because they all happen at once and that fact means they compound and interact on each other.  Whatever else you believe about massive weight loss, don’t believe it’s only about weight.

Assignment of culpability
One of the stigmas of obesity is the moral judgement that goes along with it.  The theory is that fat people did it to themselves therefore they deserve the contempt heaped upon them. We look in their grocery cart or sneak a glance when the waiter brings their meal, shake our heads and silently think to ourselves “Look at that. No wonder they are fat.  And I bet they blame it all on somebody else.” If we have a twinge of conscience over this line of thought, we remind ourselves it’s okay to think and talk this way because, at least in this case, it reflects their character and not ours. “It’s not mean” we tell ourselves. “Just honest.”

I see some of that assignment of culpability in the comment that “you took an amazing success and turned it into a shitstorm,” in reference to the issues I faced after massive weight loss that took me to the brink of suicide.  Let’s be clear here – when you look in the mirror and can objectively verify the image there is you, but your subconscious refuses to acknowledge that fact and tells you that person in the mirror is an imposter, that’s very traumatic and it has nothing to do with choice.  If, like me, integrity and honesty are at the core of your personal identity and you suddenly feel compelled to hide who and what you are, that’s also very traumatic and it has nothing to do with choice.

Nor do these things indicate mental illness. Significant body transformation is inherently traumatic. It screws with your senses, it screws with your identity, it presents a reality that differs from the one lingering in your head and that mismatch can be devastating. When an athlete suffers a debilitating illness or injury we understand that their profound depression. Their identity was tied up in a sport they can’t participate in any longer. But when someone loses a lot of weight and has problems adjusting they are just being self-destructive. Yet in both cases the root cause is a significant mismatch in the person’s identity and self-image before and after. They are the same disorder so why does one garner sympathy and the other is so easily dismissed? There’s a better case to be made for mental illness if someone were not profoundly impacted by such changes.

After my weight loss, my reality and my identity underwent a tectonic shift. The “shitstorm” was just me trying like hell to hang on long enough to make the adjustment.  That I wasn’t able to do that is a measure of just how hard that transition is, and not the self-destructive act that the comment would imply. I didn’t turn a success into a shitstorm. I rode a bull and managed to hang on a good long time before getting bucked off.

Some unsolicited advice
Despite the push back, I don’t harbor any ill will over the comment that inspired this post because it reflects what is pretty much the standard way of thinking about obesity and weight loss. These are to most people two sides of a very uncomplicated equation: obesity means medical problems and loss of respect; weight loss resolves those things.

But even in this one-dimensional view it should be obvious that things are not that simple. When in desperation I put half of that weight back on, I didn’t turn an amazing success into a shitstorm. Of the nearly 200 lbs I lost, I’m still down almost 100 of them. The suicidal thoughts are gone, my relationship with my wife is better than ever, and I’m enjoying my work again. To my way of thinking, I pulled an amazing success out of a shitstorm, not the other way around.

So my first bit of advice is don’t assume that a tweet, or a blog post, or even the rambling tomes that I produce, tells the whole story. A bit of biography consumed in 10 minutes or less does not reveal the breadth and complexity of a person. Coming to understand a person’s character takes an investment of time and a dialog. It’s a negotiation, not an exposition, and one that never truly ends.

My second bit of advice is to have made that investment and have had quite a bit of dialog with the other person before presuming to tell them how they fucked up. It is not possible give and receive advice of that type without an existing bond of trust. In the absence of such a bond it comes off as self-righteous and contemptuous.  Even if the intent is sincere, explaining that doesn’t help. The appeal to sincerity requires in the other person a level of trust that, if it were present, would obviate the need for the explanation. Worse, it asks for more trust than is reciprocated.

Sorry if this sounds a bit preachy. Normally I try to avoid prescriptive advice so when I do feel compelled to give it I’m not very good at it. However, I’ve been wanting to revisit the weight loss issues that led me to deliberately put a bunch of weight back on and the comment on the last post gave me the motivation. I hope this has shed some light on a topic that is often painful and rarely well understood.

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I’ve made no secret that I color my mustache and hair. It’s not to do with disliking the gray so much as disliking that it grew in highly asymmetrical. On the mustache the gray came in from the bottom right while the opposite side was still pure black. It was as if the General of the Gray Army decided to concentrate all his forces in one sneak attack along the jawbone and then rush the right corner of my mouth in an all-out assault.

When from a distance it started to look like I trimmed my mustache into a question mark, I started to color it. I just couldn’t deal with that lopsided face looking back from the mirror and I wasn’t about to give up the mustache. Now and then I let it go natural to see if it’s evened up.  As of a month ago the gray is up creeping up both sides, but it is still lopsided. From a distance it now looks like my mouth droops left by about 15%. OK. Experiment complete. It’s no longer natural.

When the top started going gray it was like it competed with the mustache for weirdest look. Gray temple on the right. Amorphous white blob off to one side above it. You’ve got to be kidding me. So I started taking the leftover mustache color and applying it to the gray patch and temples. That worked until it started getting an all-over salt and pepper sprinkle and then it turned into a reverse asymmetrical dark spot on that side. Eventually that drove me to do something I ‘d vowed my whole life to never do, and now a few times a year I color whole thing and use the mustache color as touch-up in between.

Sigh.

Well that was a few years ago and if the mustache is any indication the gray up top must have spread.  But is it everywhere?  Is it at least symmetrical?  Only one way to know for sure.  It has now been a couple months since I applied any color at all above the temples, and 6 weeks since the last haircut. Hopefully the roots are now longer than the length of the close cut I plan to get today and I won’t have to wait another few weeks to see the real me. Parting the hair I can already see a big patch from the top center and off to the right. I expect from a distance it will in its natural state look like a cannonball took a semicircular divot out of the top right side my head.

None of which would be really noteworthy except for the anxiety ramping up over the last couple days. This morning it’s palpable. All the classic symptoms of a panic attack – racing heart, flight response, urge to go color my hair.

The odd thing is after years of running the rules engine, it’s like there’s two of me. The one you see and the one on the inside who intercepts my natural responses, editing or replacing the socially unacceptable ones to varying degrees of success. The calm, rational, interior me is able to sit down and write about this from the perspective of an objective observer, but is utterly unable to modify the physical responses or quell the panic attack.  That itself is a bit freaky. Normally those functions are so well integrated that I experience myself as one entity, and being able to watch as they bifurcate to such a degree is at once as fascinating as it is disconcerting, and that’s also contributing to the problem.

The rational interior me is thinking “Wow, I can see how this could create a feedback loop that spirals up into a psychotic break,” to which the external me replies “OH SHIT WE’RE HAVING A PSYCHOTIC BREAK!” and jacks up the heart rate and blood pressure. (As confirmed by Omron.  HR now 87, BP sufficient to drive the hydraulic parts of a small backhoe.)

My theory about the anxiety relates to a couple of incidents in my past. The first of these goes back decades when my wife, then my fiancee, cut her hair several inches and it was just enough that I didn’t recognize her when she came by the store where I was working to show me. As a kid of 19 we both assumed my severe reaction was all about my preference for long hair. Years later in the context of autism and face blindness the degree of impact this had on me was better explained by the shock of being engaged to marry and spend the remainder of my life with someone I did not recognize on sight.

The more recent incident was the occasion of my losing almost 200 lbs.  Even at my heaviest weight I was comfortable with how I presented to the world.  It’s not as if you can hide a couple hundred pounds, after all. So I never felt as if I was deceiving people, least of all myself, about who I was.  But after losing that much weight I had a lot of hanging skin that I had to figure out how to hide. At one point I was wearing short sleeves to work and a client was unable to stop staring at the “bat wings” hanging out from the sleeves.  I think we were both a bit traumatized by that and I determined to never let it happen again.

The skin folds under my chest, waist, and thighs were even worse. As was the discomfort when friends who, believing they were being supportive and celebratory, would inquire as to my “beach bod” or similar references to now being free to dress for warm weather activities. In fact, it was the opposite. Fat people may meet with some revulsion for wearing revealing clothing but you still see them everywhere in swimsuits or big guys going shirtless. Though I never went shirtless and rarely wore shorts, at my top weight I  would at least have been on the outer edges of normal shirtless at the beach. At my skinny weight it would have looked like I was wearing a hula skirt made of human skin.

Even as friends were congratulating me for losing all the weight, I was freaking out because for the first time in my life I felt that I had to hide my true self from the world. I was sure that the same people so enthusiastically congratulating me on my looks would actually be revulsed at what I really looked like if they only knew. So my wardrobe choices became all about making sure nobody ever knew. Except me. Every day in the mirror a hideous guy I didn’t recognize stared back at me with a look of mixed horror and disbelief.

For purposes of insurance, skin fold removal is considered cosmetic so it wasn’t covered. I wasn’t able to afford it out of pocket so I decided to live with it and save up for the surgery. But the body dysmorphia took a constant toll and in time I became profoundly depressed. My marriage foundered. My work, which has been more of a calling than a career, lost all meaning.  After a couple of years I started thinking I’d done all I was going to with my life and maybe it was time to check out. My wife had already called dibs on dying first though, and I take my promises seriously, so I tried to hold on even as I continued to spiral down. Eventually out of total desperation I decided to see if I could at least get rid of the body dysmorphia and I put half the weight back on.

That actually worked and I’m back to my old self again, in more ways than one. My marriage is better than ever and my work has purpose again. It also provides a plausible theory for the amount of anxiety I’m feeling this morning. My hair is very thick so even though there’s an inch or so of white roots, none of that is visible.  This afternoon I expect to walk into the salon with hair that’s uniformly black all over and walk out with hair that’s mostly salt and pepper with at least one giant glob of solid white that’s too big and too asymmetrical to ignore. Having dealt with severe dysmorphia I think maybe I’m a bit afraid of severe mirror shock.  Having already had my marriage rocked to the core by a haircut isn’t helping.

So in my best “feel the fear and do it anyway” tradition, I’m doing my best to make it to my noon appointment without freaking out.  And hopefully also make it out of the salon in the same condition.  But there’s a box of Just For Men – Real Black on the counter in the bathroom with my head’s name on it, just in case.

Update: Gotta admit, I’m really struggling to get used to this.  Been avoiding mirrors like a vampire!

The most unexpected thing is the dark streak on the left. It’s so uniformly dark that my stylist was convinced I’d colored it, but of course seeing the natural hair was the whole point and I hadn’t put anything on it. So basically, the sides are both salt-and-pepper and the top is half dark and half light. The saving grace is that it has far less contrast than I’d expected.

Upshot though is that this bugs the crap outta me. As Kristine mentions in the comments, there’s a certain aesthetic quality to natural asymmetry that we tend to admire. It’s the essence of what we find beautiful about driftwood, after all. Maybe if I start to think of my head as a piece of driftwood I can learn to appreciate it. Credit where it’s due, my wife says she’s always considered me a blockhead and it’s helped her adjust her expectations over the years. She’s always way ahead of me on stuff like this.

So I’m going to do my best to get used to this but the shelf life on that bottle of color may turn out to be awfully short.

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Except that on later reflection I remembered her arm went about 45 degrees past horizontal and it was kind of a quick jerking motion, so now I’m wondering if she was giving me the thumbs-up, or miming “get the fuck out of here.”

After 35 years of marriage and despite my autism and partial face blindness I can now usually distinguish correctly between gratitude and annoyance in her face.  (Everyone who has NOT been married to me for 35 years should not expect this level of facial fluency from me, by the way.  This means you.) Brushing of teeth obscures all the usual facial clues. She hasn’t given any overt indication she’s annoyed with me tonight but that can be an unreliable indicator.  The thumb went just far enough past horizontal and jerked just fast enough to be ambiguous.  Either she appreciates the consideration or  wants to throttle me and I have no idea which it is.

Now that she’s asleep I’m pretty certain I know what the answer will be if I wake her up to ask.  Annoyance. Definitely.  Even I know not to do that, no matter how anxious I get.  By tomorrow she probably won’t even remember making the gesture though.  Now I’m not sure what the hell just happened and thinking I never will.  This bugs the crap out of me.  It’s gonna be a long night.

Trying to make the most out of it, I’ve updated my internal rules engine to factor in tooth brushing as a confounding factor in spousal mood interpretation. I wonder whether she will at some future point realize that I don’t talk to her while she’s brushing her teeth anymore, even to the point that I actively avoid the bathroom during that activity? I wonder whether there are intimate moments we have during those times that I’ll miss and, if so, do they offset the risk I’m eliminating with the new rule? I re-read this and wonder if I’ve turned into Don Tillman?

Though I suspect the answer is “yes,” building and tuning the internal ruleset for the last several decades is how I dug my way out of isolation and became socially functional.  Talking to clients, attending and speaking at conferences, navigating airports and train stations, all depend on it.  It took a long time and lots of rules and tuning before I was able to live full-time in the neurotypical world and now I need the rules engine like other people need oxygen.  Sitting here trying to convince myself to not enable this prohibition about talking to her while she’s brushing her teeth is like trying to convince myself not to breathe.

“Have faith,” the sensible voice in my head tells me.  “Even if she was telling you to get out, this has never happened before, probably never will again, and if she was really peeved about something she’ll eventually talk to you about it because that’s how you got this far together.  She’s the one person in the world you can be fully authentic with and you cannot afford to lay any bricks in a wall that would rise up between you.  Don’t make a new rule for this.  Trust me.  Better yet, trust her.”

“Fuck you!” says the keeper of the rules engine.  “I made you who and what you are and if you get overconfident and decide you don’t need me, you’ll crash and burn.  I put this rule in place to protect you from yourself and you’ve trusted me all these years because it’s the only thing that’s ever worked.  If she is mad then she went to bed that way and you do not want to start going to bed mad at each other.  That’s another one of our rules and because of it your mixed neurotypical-autistic marriage has lasted far longer than an average marriage these days. You ignore me on this and you’ll be sorry.”

After 50+ years of autism, I’m still amazed that I don’t have a better system to be functional in the world.  My instincts tell me that these all-or-nothing rules I build to avoid ambiguous or bad outcomes are clumsy sledgehammers whose margin of error far exceeds the fine adjustments I’m trying to make.  They were useful when I was completely dysfunctional and spent no more time in the company of humans than I was forced to, but they only get me so far.  But the system arose organically.  I didn’t plan it and I certainly didn’t stop to think of how I’d know when I needed something better.  What I do know now though is that I either need to come up with some new tools to explore subtle nuances of social interaction or else get used to the idea that this is as good as its ever going to get.

Writing these as though someone else will read them forces me to look at my issues differently.  In the process of explaining it to you I end up explaining it to myself.  You didn’t need to read this far but since you did you are my hero.

On the other hand I can assure you I definitely needed to write this far, and I know that is so because I can breathe again.  My heart rate is settled.  Now I believe this was nothing more than one of those panic attacks I get when the veneer of social functionality is ripped away and I’m forcefully reminded of just how blind I am when it comes to the kinds of non-verbal communication most people take for granted. Past a certain level of social fluency it’s tempting to slip into believing  I’ve become natively good at this stuff, and a bit of a shock when the world occasionally slaps me in the face with the truth.

Oh, in case you were wondering, somewhere toward the end of writing this piece I told the keeper of the rules engine “No, fuck you! If I can’t be authentic with her I can’t be authentic with anyone so rule == rejected. Vetoed. De-nied.”

In the long run, building a wall between us would cause more pain than it could possibly prevent, but it took telling you to convince me.  So thanks for that, hypothetical reader!  Easiest random act of kindness you will have committed all day.

Feels like that some days

It’s been a hell of a year or so. You may have seen me post from time to time on Facebook about some of the crap that’s gone wrong but in case you missed it, there have been major issues pretty much every month or few weeks for 18 months or so both at home and the in-laws house (which I’m responsible for).

• HVAC, dishwasher, disposal, in-wall oven, washer-dryer, refrigerator, water heater, attic fan, and even the countertop microwave we got to temporarily replace the built-in one, all failed.
• Roof leaks, HVAC condensate drain, landscape drainage, failed double-glazed windows, and water heater overflow all led to water damage.
• My truck, wife’s car, daughter’s car, in-laws’ car, motorcycle and even the freaking lawn tractor all needed major unscheduled work.
• Several rounds of trees falling down. Once it was blight. Another time it was insect infestation. The last time we got so much rain the ground softened up and a whole stand of trees keeled over root ball and all and took out part of a neighbor’s fence.
• A variety of illnesses and surgeries in the family. At this age every list of possible causes ends with the words “or it could be cancer.”  It hasn’t been cancer in any of the cases but that’s led to some tense weeks waiting out test results.
• Over the last few months I’ve been pretty sick but since I wasn’t running a fever most of that time I didn’t know it until I was so fatigued and anemic that I only got out of bed to do my professional work and that was about it.

Because we humans are hard-wired to misunderstand probability we tend to think of things with astronomical odds as mere thought exercises.  Academic scenarios that could never actually happen to us.  But if there’s a 1 in 10 trillion chance of something happening, it is equally likely to happen on the first try, the last try, or any iteration in between.  Since we don’t understand that, we also tend to attribute a run of bad luck like I’ve had to karma, divine intervention, or other forces directed specifically at us.  And that’s my problem lately.

If you’ve read some of my darker blog posts you may also know that in my teens I was full-on paranoid delusional. I could tell everyone else was able to communicate by some means other than by speaking. My autism was undiagnosed so instead of thinking “I really suck at parsing body language” I thought “holy crap, everyone else has mental telepathy!” It explained the non-verbal communication as well as all the physical and mental abuse. I was being singled out but like the hero in any Philip K. Dick novel had no idea why.

Getting past that required giving up on the idea that I’m so special that pretty much the whole world would single me out for abuse. “World” in this case being an entire high school and neighborhood, but in those days that was my world.  I still lacked an autism diagnosis at that time but I made peace with the idea that having no rational explanation for my apparent telepathy deficiency was better than paranoid delusions that rendered pretty much my whole life as irrational.

The ability and habit of intercepting my spontaneous reactions for internal processing before expressing them became the foundation skill that allowed me to transcend my autism and the conditioning of my early environment.  But to this day when I’m overwhelmed there’s a still twinge of that persecution delusion lurking just below the surface.

After the 18 month run of constant damage control and triage, that delusion wasn’t so much lurking as jumping up and down on my shoulder yelling in my ear.  My situation kept deteriorating and then a few months back I got so sick I was reduced to staying up just long enough to do my work, then crashing again in bed or on the couch.  As recently as 3 weeks ago I kept wondering “Is it just me or is everyone having the Year From Hell?”  Anyone with a similar disorder knows that “just me” and “why me” are reliable red flags but I was too far gone to notice.

Finally after two rounds of antibiotics and some iron supplements I started feeling stronger and told my delusions to go back to wherever it is they’ve been hiding all these years. That run of back luck was improbable but that doesn’t translate to “they” are out to get me.  Shit happens.

I had pretty much gotten over my delusions of grandeur a few days ago when my neighbor knocked on the door to tell me another one of my trees is dead. Sure enough, there’s a spiral gouge running from the top of the tree to the bottom. The bark bulges out where the tree sap boiled and exploded. The trunk is split in several places and the tree is teetering.
If it falls, it is in easy reach of my house.  And my truck. And my wife’s car.  And the neighbor’s driveway.  And the street.

My delusion immediately popped back onto my shoulder, now screaming earnestly into my ear:

“What’s it going to take to convince you?  The finger of God reached down from the heavens to smite the one tree tall enough and positioned precisely to threaten the most property.  The one tree uniquely representative of the greatest financial liability among all trees on your property.  A tree that now must be taken down urgently before that potential liability becomes an actual catastrophe.  And she signed her name on the tree in lightning so you’d know, without any doubt, she’s personally fucking with you. Yes T.Rob, it is just you.  Un-get over yourself, already.”

Somehow I thought I’d put all that behind me.  Now more than 35 years out of recovery I realize that delusion is waiting patiently for me to indulge it again.  It started out as a side effect of my autism but blossomed into it’s own condition and it’s damned persistent.  I’m never tempted to repeat the drug and alcohol abuse of my youth, but the siren call of paranoia beckons even though I know how self-destructive it is.  Paranoia renders order out of chaos.  It explains why shit happens and in that there is comfort.

Which explains my mixed feelings about the abyss.  Yes it’s scary, but in it there is also the confidence of familiar territory.  Out here in the world I’m breaking new ground, making things up as I go.  It’s all improv and I’m working without a net.  Down there everything is crap but I know how it functions and my place in it and if I do fall there’s not far to go.  So when I lean far out over the void and look down, my logical brain says this should scare the Hell out of me, but instead I’m thinking “Hey look, I can see my home from here!” and feeling a bit nostalgic about it all.  Is this why people go off their meds?

I’m not on any meds so there’s nothing to “go off” of.  When I lean far out into the void and look down, my family and my work keep me anchored in the world.  Down in the pit there is only The Grind.  Out here I have passion and purpose.  So out here is where I’ll stay, even though that means I’ll never have a satisfying explanation for the marathon shitstorm of the last 18 months.  But thinking back 35 years, that’s the Faustian bargain I made to get out of the pit.  That’s the price of living in the real world.  I gave up any claim to knowing why shit happens.  Now I must content myself only with the knowledge that it does and attempt to bear up under it with grace.

That said, set your calendar for New Year’s Day 2018.  Because I have my limits and if this shit keeps up for another 18 months I’m going to demand an explanation from somebody and by God I’m gonna get one.

If that was the end of the story, it would still be a cautionary tale about bigotry and vulnerability, contempt and compassion, and ultimately about love and hate.  But that’s not the end of the story.  Not by a long shot.  After two weeks of relative peace, hackers began to attack the site and have been doing so continuously for about three years.  At one point they successfully redirected the site to their own servers and for a brief time kids logging on were told, among other things, that they should kill themselves.

The typical societal approach to bullying defines it as a two-party conflict.  Over the years we’ve developed lots of interventions for both parties–bullies and victims.  For most of us this makes it someone else’s problem.  If you aren’t a bully and aren’t a victim then it’s not really personal.  Except, that’s a fiction.  If you aren’t a bully and aren’t a victim then your role is to define the victim pool available to bullies.

Bullies don’t just pick victims at random. They look for victims they can attack with impunity.  They look for people who are already marginalized because they know nobody is going to come to that person’s aid.  If we were going to rally to the defense of that kid sitting all alone at lunch time, that kid wouldn’t be sitting all alone in the first place.  When we make someone an outcast we give permission for them to be victimized.  We don’t have to say it out loud or acknowledge it for it to be true.

The scope and severity of bullying and hate crimes describes a map of who the social group cares least about and the degree of disdain in which the group holds that person or class of people.

The thing about society is that our ethics are more transactional than principled.  If we intervened on behalf of victims out of a belief that bullying is unacceptable, then it would not matter the character of the person victimized.  We’d intervene simply because it is the right thing to do.  Such people are rare and when they do walk among us we revere them and build entire religions around them.

Unfortunately, most of us practice relative ethics.  In this model, some people have intrinsically more human worth than others.  People high up on the food chain deserve more of our respect and we’ll protect them if they are threatened.  If those at the bottom get hurt, well they had it coming.  Family, friends, peers all cluster close to us in the social hierarchy.  Based on victim statistics, autistics other than family members are somewhere far below.

The less like us a person is, the less interaction we have with them, the less intrinsic worth we attribute to them and the more likely they are to be a victim.  When we consider that the primary indicator of autism is social impairment, it is little wonder that the autistic population is vastly over-represented as victims of violence.  That we consider the autistic kid weird factors into our willingness–or lack thereof–to intervene to stop a bully.

Consider what this tells us about character.  If we intervene out of principle then the character of the victim doesn’t factor into the equation.  That intervention is an expression of the principle that bullying is unacceptable.  It tells us nothing of the character of the victim and everything about our own character. Most people I’ve discussed this with agreed with this assessment.

The next case is a bit harder for many folks to accept though.  If our intervention is situational then the character of the victim still doesn’t factor into the equation. The autistic kid may be weird and socially inept but those are communication impairments and not character.  In fact, the dividing line between the populations of people on whose behalf we would or would not intervene tells us nothing about the character of the individuals in those pools.  It does however quite faithfully reveal a map of our own character.

If that’s true then it means bullying and hate crimes are really not someone else’s problem.  It means we have the capability to act and that failure to do so leaves a stain of culpability on our souls.  It means that victim statistics reveal the map of our society’s character just as our personal rules of engagement define us as individuals.  And the picture revealed isn’t flattering.

When Stuart reported the hackers attacking Autcraft servers the FBI were uninterested.  When he reported it to Mojang, the developers of Minecraft, they too were uninterested.  If the hackers used the exact same methods to attack the web site of a presidential candidate, if they told the candidate to go kill him or herself, I guarantee the FBI would investigate. That they have not and we don’t rally and force them to shows that our enforcement is situational.  Some people are better protected than others.  Autistic children didn’t make the cut.

As a society we’ll intervene in a heartbeat for the concept of children.  Unborn children are passionately defended.  Hypothetical children are just as passionately defended from all manner of perversions real and imagined.  Conceptual kids who exist only as rhetoric have yet to be cursed with the human failings of race, religion, socio-economic class, gender, or disability and receive unending and passionate support of social reform groups and our legislature.

Actual flesh-and-blood children on the other hand are not so lucky.  Once born they are assigned relative worth depending on what they are.  Race, religion, socio-economic class, gender, and disability determine the extent of support and protection they receive from society, or conversely the degree to which they are institutionally disadvantaged.  The question of who they are–their character as individuals–doesn’t come into play until after their relative human worth is already decided,  and when we do bother to factor character into the equation we do so only to diminish someone’s standing.

Addressing this is easier said than done.  Defending a principle sounds simple.  If something is wrong it is always wrong. That takes all the guesswork and judgment out of it.  But sometimes defending a principle benefits people you dislike.  In those times we need to remind ourselves that it is the principle we are defending and not the person.

Most importantly though, once we accept that bullying requires permission of the social group then we can intervene through influencing that group.  We can explain the role of onlookers in providing tacit permission and encourage people to withhold that permission.  We can go from telling people it gets better to actually making it better.  Today.  Right here, right now.

Personally, I direct my outreach through many different channels.  Obviously, writing is a large part of it.  I speak at anti-bullying events and I volunteer at a local elementary school.  I use Donors Choose to direct funds directly to teachers with autistic and special needs kids.  When I find groups working toward compassion-based social reform, I support them financially and with in-kind gifts where possible.

One such group is the Special Assistance Network, a newly formed non-profit out of Florida.  The founder Trish Bowden realized that families dealing with profound disability are most in need of legal protections such as trusts and wills but often least able to afford them.  Not one for doing things by half-measures, she earned a law degree while working full time, then took early retirement from a prestigious and well paying job to study for and pass the bar.  With law degree in hand she then assembled the team who would become the core of the Special Assistance Network.

Among her other goals for SAN was that it have some autistic leadership at the top.  She reached out to me and I’m happy to announce that I have accepted an advisory position on the Special Assistance Network board. It is early days yet and we don’t know what SAN will blossom into but we do have our first client. I look forward to contributing and helping the organization grow.

And although we can’t help Stuart with his hacker problem, SAN is working to address the root of the problem through leadership and example.  The FBI might not care about autistic kids.  Mojang may not care about autistic kids.  Society may not care about autistic kids enough to rally around Stuart and demand equal protection under the law for the Autcraft server and community.  But SAN is willing to stand up and say “We care.  You are important and deserve the opportunity to live up to your fullest potential.”  The hacker activity at Autcraft is a vivid reminder of why we need to take that stand.

When I talk about compassion-based social reform people often tell me I’m wildly optimistic, if they are being polite.  Others simply tell me I’m delusional.  Nothing I work on, they tell me, can ever hope to solve the problem or even make a big dent.  In the end it all comes down to character.  To know the extent to which autistic people are victimized and stand silent is to give assent.  Taking action isn’t about winning or losing.  It’s about saying #WeAreNotThis.  It’s about saying I am not this.  In the end that’s the most important thing any of us can do.

I made it all the way to McCarren airport without a hitch.  During the flight I alternated between wondering what I’d do all alone on a Saturday night on the Vegas strip and trying to get caught up on last-minute work.  The thing is, I never use the laptop on the plane and I should know better than to depart that far from my established routine.  I exited the plane just like normal – Water bottle? Check. Man-purse full of electronics, snacks, medicines, and itinerary? Check. Backpack? Check.  Phone? Check.  Headphones and miscellaneous cables? Check.

Laptop? Didn’t check.

I was a long walk, a tram ride and a short hike away from the gate before I figured it out. I practically ran back to gate, trying not to freak out. Heart racing. A massive cold sweat, except it’s McCarren airport during the day so there’s nothing cold about it. The gate person who went to fetch the laptop must have got to talking to someone because she took a really long time to return. All I could think while she was gone was that they were looking for it and someone had picked up on their way out. I can recover from a lost or crashed laptop but it isn’t cheap, it isn’t quick, and it isn’t something I want to do from the other side of the continent.  Definitely not the way to start a conference at which I expect to line up half my business for the year.  Eventually she returned, laptop in hand, and I collapsed in relief.  I had to take a seat for a few minutes and just breathe slowly with my eyes closed.  Eventually I got up and headed a bit unsteadily toward the tram and baggage claim.

I’m here for 6 days and anticipating bringing back some new clothes, including an #ibmchampion shirt, and maybe some books, so I have the large suitcase.  I figured it would be spinning around the carousel all alone by the time I got there but instead I discovered the baggage claim area is under construction and half the carousels are down. Mine was swamped with 3 planes worth of people and one side was blocked by construction fencing.  The thing was mobbed.  I hate crows on my best days.  In my present condition, this situation seemed lethal.  No way I was going to wade into that throng so I hung out off to one side and waited.

For every person who picked up a bag, it seemed two more showed up. About 1/2 hour after the first bag appeared the crowd was thick as ever.  I watched my bag orbit the carousel several times, unable to get close enough to retrieve it. After 40 minutes and no end in sight, I waded to the back of the crowd. There was a slow turnover as the people up front collected their bags and left, allowing the people in back to advance.  As people moved forward, new ones refilled the line from behind.  The mass of us moved slowly forward like a human glacier. By the time I made it to the front, I’d seen my bag complete 4 more orbits. There was no maneuvering or leaving the way I’d come in.  I was being shoved from all sides except the front so I closed my eyes, gritted my teeth and tried to ignore the people pressing in around me. My earlier purgatory of panic at the gate now seemed like the good old days. I stopped counting signs of stroke and heart attack that I was having and started counting the ones I wasn’t having. It was a smaller list.

When I finally made it to the front, I’d seen my bag pass by so many times I knew exactly when to expect it.  That didn’t help.  Other bags had come down the chute and mine was at the bottom of a small pile.  Normally this isn’t a problem for me but people were pressed in on me from all sides.  Less space means less time to grab the bag and fewer places to put it.  Instead of lifting the bag off the carousel, the bag lifted me onto the carousel, jostling several other passengers.  I looked like the worst-ever wet t-shirt contestant and a couple of the people I bumped into reacted with disgust when they figured out the something-wet they felt was me.  I got back up and waited for the next pass of the bag.  Fortunately, some of the people I’d knocked into fetched their bags and left so I didn’t have to feel the contempt in their gaze while we waited.

When I finally retrieved my bag I fought free from the crowd, made my way to a quiet corner and collapsed into a chair hoping to make my impending death a bit more comfortable.  I really wanted to hear my wife’s voice but also didn’t want to distress her.  Not that I could have operated the phone at that point since my hands were shaking.  So I just put my headphones in and turned the music up.  I find that if I can sync the music up to my mood, I can shift my excitement away from whatever is distressing me.  Once I’m more focused on the music than the problem I then ratchet down the panic by picking successively calmer tunes.  Triumph. Blinding Light Show.  A song about a light show so intense that the entire audience dies during the performance.

    And the blind shall
Lead the sighted
As we lose the candle glow
No one knows tomorrow
In the blinding light show

I don’t know how many people attended the Blinding light Show but after sacrificing all of them, I felt better.  Best of all, I felt drier.  It may be hot in McCarran but it’s dry as a bone.  I collected my things, queued in the nearly-nonexistent taxi line for 5  minutes and after a short ride finally made it to the hotel.  Finally, I thought, I can unpack and pass out on the bed.

Which was an excellent plan, right up until the moment that it wasn’t.  This is Vegas.  I expect the rooms to be on the far side of the casino from the front desk and they were.  I expect to swim through indoor smoke as thick as pudding on my way to my room, and I did.  I expect the room to be at the farthest end of a long hall appointed with the most luxurious carpet that feels great under your feet but holds onto your luggage as if it has tentacles, and it was.  I expect a room with an adjoining door to have a deadbolt – and it didn’t.

Apparently, the management of the Tropicana (a Hilton/Doubletree property) felt the deadbolt was more security than their guests needed and removed it.  The only thing between me and the guests in the adjoining room was a hollow-core interior door, mounted to a foam-core door frame, and a simple closet-quality latch.  The kind you might have on a pantry or laundry closet door.

In fairness, when the door is closed, the guests on the other side have no exposed latch or knobs to pick.  All they see is trim plates.  And that might be OK if any of the components involved were sturdier.  Usually the door to an adjoining room is comparable to an exterior door, possibly even a fire door.  The door frame is usually either heavy steel or solid wood.  The door hardware usually includes a deadbolt because the kind of latch that springs in to allow the door to close without turning the handle is easily picked.  Usually the door hardware is comparable to that of an exterior door.  None of this was true in this case.  I’m sure the hotel doesn’t have problems with this setup or else they wouldn’t allow it to exist.  At one point the door did have a deadbolt and someone made a deliberate decision to replace it with trim plates.  But after nearly losing my laptop on the plane and my life in baggage claim, no way I’m unpacking into this room.

The clerk who took my call was gracious enough but a bit clueless.  He said he’d call me back because he needed to check with someone.  When I asked what for he said he wanted to see if this was a standard feature of the Bungalow suites.  Wait, what?  A near total lack of security might be a feature?  I explained that regardless of the answer the room wasn’t acceptable so he moved me and gave me a $50 dining credit.  That was a welcome consolation gift since by now I was tired, hungry, cranky, and exhausted.  I picked the pasta thinking I’d be able to get two meals out of the credit.

When dinner arrived it totaled to $48.  For a $20 dish of pasta.  I know they tack on delivery and a gratuity but this seemed impossible.  Sure enough, it was.  The prices on the bill were higher than those on the in-room menu.  My server apologized and promised to make an adjustment but didn’t offer to add additional dining credit.  I guess that’s reserved for managers and the Front Desk but at least he didn’t try to squeeze me for even more of a gratuity than they add on automatically.

The pasta was good.  So I have that going for me.  And I’m in Vegas, surrounded by casinos, and I seem to be running a deficit of good luck.  The way I figure it, I’m due about now.  I’ve locked all my cash up in the safe except for $20 which I’m taking downstairs as soon as I submit this post.  I’m going to blow that entire $20 – no more and no less – on quarter slots.  If my theory is correct, my good-luck deficit will correct itself and I’ll take all my winnings back to my room, throw them on the bed, and roll around in them like Scrooge McDuck.  There’s a selfie you don’t want to see.  Or maybe I’ll just lose $20.  Either way it has to be better than the trip here and right now that’s all I really care about.   Wish me luck.

On reading it Morag asked “How can all that go through your head in 5 seconds?!”  I don’t propose that the answer to that question is entirely due to my autism, but I do suspect it is at least strongly influenced by it so I’m responding here.

For as long as I can remember, a key part of my communication deficit has been that my thoughts race ahead so much faster than I can verbalize them. For many people the phrase “lose my train of thought” refers to a complexity problem or a bookmark problem. They either get lost in the intricacies of the concepts or else have composed something specific and end up focusing more on articulating it faithfully than on the content itself.

But in my case “losing my train of thought” is more like the train is pulling away from the station too fast. Problem is, I’m on the train and the other person is on the platform. I try to stay anchored in the conversation at the platform but my thoughts race me away so fast that sometimes this isn’t possible. To an external observer the result may be indistinguishable from the complexity or bookmark problems even though the root cause is completely different.

One of the things that I experience regularly in social discourse is that my struggling with verbal communication is perceived as by being “slow.” Not when talking about something in which I have expert knowledge of course, but when making small talk some people come away with the impression that I can’t keep up. Ironically, what’s happening in these cases is almost always the opposite – I’m working hard to slow the thoughts down and focus so I can express a thought before it is replaced by ten more and I can’t get it back.

It’s takes conscious, deliberate, and focused attention to pull that off which is why after presenting a conference session or two I usually go back to my room to chill out. Not so much at MQTC because it’s a much smaller event and it’s more like a reunion than a conference, but definitely at the larger events.

So the process for the Google Male blog post went something like this:

1. Open email from Google
2. Humor ensues resulting in a brief pause
3. Frantically write notes for 5 minutes
4. Ponder it for a day
5. Take an hour to convert the written and mental notes to the finished post

(Spoiler alert, if you haven’t read Google Male yet these give much of it away so if you plan to do so, now’s the time.)

In the 5-second span described in the post, the germ of each of these ideas was born:

• I thought it was weird my friend had left a voice mail that mentioned having a penis.
• I thought it was weird it had a definitive “cutoff” date and time.
• I thought it was weird the time was within the next few hours and why wasn’t she in the hospital prepping?
• I wondered how she’d call from the hospital afterward and about the interval of time she considered “right after”.
• Somewhere in all of this I was reminded of a couple friends in gender transition and wondered if they’d find all this offensive or funny. If I believed they’d find it offensive I’d not have posted it.
• It occurred to me that it must be a temporary thing and I wondered how that worked, which led to the image of a car dealership and a showroom. (The lineage of that probably traces back to the old joke about picking your nose in the plastic surgeon’s office, another case of selecting body customization from a matrix of pre-set offerings and juxtaposed against a social taboo.)
• Then I remembered brain surgery which is done under local anesthesia and thinking it would be one type of major procedure where you could have that phone call during the operation. Cue the image of someone in a cranial cradle with their brain exposed chatting casually on the phone while the surgeon is mucking about with the gray matter.  Now morph that by putting the patient in stirrups and have the doctor mapping nerves “down there” instead of in the skull.
• I wondered why call me about this and why I hadn’t got the call when the thing had first been attached.

That was the essence of the entire post and it happened near-instantaneously.  I don’t actually know that it was 5 seconds because there’s no subjective passage of time when this occurs, it’s more like a flash of inspiration in which fully realized ideas just materialize with one hell of a lot of detail and texture. The return of conscious control and re-entry to normal subjective time is always a bit jarring and generally marks the moment when I recognize what’s happened.

The experience is a lot like waking up from a dream and trying to write it down before you lose it.  It’s also similar to the petit mal seizures I used to have as a kid except that I never completely lose awareness of the outside world and it can be interrupted, for example to alert for danger, a ringing phone, a tap on the shoulder, etc.

The experience and my handling of it has evolved over time.  As a kid I only had two communication modes. I was either in my own head quietly thinking along at my natural pace, or else I was attempting to talk at that same pace, giving voice to every thread of thought, annoying the crap out of everyone around me and wondering why I got back negative reactions like frustration, anger, and dismissal.  Very often I was frustrated because it seemed to me that everyone else was slow and it was the rest of the world that couldn’t keep up with me.

It took a long time before I figured out that I needed to slow down verbally and try to focus on a single conversational track when trying to converse with other humans.  Problem is, when I try to focus on one thing the random thoughts don’t subside on command.  I have to erect and maintain mental walls to keep the distracting thoughts out.  My experience while in this state is akin to a swarm of hornets trying to invade my conscious sphere from all directions.  The nature of each invading thought in relation to the subject of my intended focus describes a facet on the surface of that conscious sphere where the two overlap or intersect in some way.

Over time as more and more of those facets are described and fixed in place the more the boundaries and structure of that sphere of consciousness becomes perceptible.  Where those facets cluster together describes a strong interaction or dependency between two things.  I find it fascinating, entertaining and enlightening to walk those boundaries in my mind until they are thoroughly mapped out. It’s incredibly easy to lose myself mapping out those intersections if I drop my focus for even a second.  This is the train that transports me away from the platform and from our conversation if I’m not careful.

With enough practice I could probably learn to suppress it entirely but I’m afraid to try since this is key to how I earn my living.  When I’m analyzing any sort of systems, but especially software systems, mapping those boundaries and intersections is not a distraction but in fact is the primary goal.  With a good enough map one can accurately describe the ways in which things will break or when faced with a broken system work backwards to identify the set of things that could have caused it.

This is the pattern recognition sense that I often credit for whatever natural talent I have as a software systems analyst and architect.  There are two aspects of this that I suspect are elevated above the general population.  One is that the knowledge base on which I draw for insight is very broad and sufficiently deep to discern connections between things that are only distantly related, and which other people tend to miss.  From outside my head it’s a bit hard to follow.  For example my pitch for why we need to prioritize digital privacy and intellectual property starts off with an explanation of the dynamics of audio feedback loops – the squeal of a microphone held too close to the speaker.  I have a very hard time explaining privacy and IP rights without first giving that example but the two things seem so unrelated to most people that it’s more confusing than helpful.  To me the connection is intuitive and critical to a complete understanding of the problem.

The other aspect of this that I suspect is unusual is that in many cases the perception is instantaneous or close to it.  In Why I don’t do Christmas cards I describe how many people just “know” whether another person is sincere.  They are unconsciously analyzing micro-expressions, body language, and spoken communications in real time to get a sense of the other person without necessarily being able to explain how they arrived at it.

While I can’t do this at all with people it is a good analogy for how I perceive complex software systems.  If I know enough about the systems involved, I perceive their interactions, boundary surfaces, overlaps and limits as an intuitive sense, and I just “know” things without necessarily being able to describe how I arrived at that knowledge.

Very often when I’m diagnosing a problem I intuitively “know” the answer within minutes but then spend have to devise the means by which to demonstrate it.  It turns out that business clients tend to insist on logical explanations and proof before committing hundreds of thousands of dollars based on my advice.  If I can’t explain my recommendations, or if the explanation of a software problem begins with a physics lesson, I don’t get asked to return.

This also explains why I do my best work at night.  It is only when I stop trying to block the invading thoughts and embrace them that I enter a state of flow.  The analysis I do in that state is what people pay me for.  Since I’ve focused on Enterprise Network Security and am responsible for tightening up the security of many vendors you and I rely on daily, I consider this my mission in life.  That I’m paid to follow that passion and that it makes a positive difference in the world are a continual source of amazement to me and I’m grateful every day for it.  But it isn’t something that switches on and off.  It’s almost impossible to maintain a state of flow and pay even the slightest attention to the phone, chat, emails, and other interruptions that go on all day.

Getting back to the 5 seconds which inspired the blog post, it was one of those instantaneous things.  I knew immediately that the email was unusual and funny, and with an incredible amount of detail about a great many ways in which that was so.  When I wrote that those things went through my head in 5 seconds the description was a bit lazy of me.  What actually happened was that one of those conceptual objects materialized fully formed in my thoughts and in sufficient detail that I could write a book.

The 5 seconds I spent next was kind of like when you win the shopping spree and they give you a cart and some allotted time to grab all you can.  In this case I just grabbed the low-hanging fruit and generated English descriptions to approximate the concepts I happened to pick.  The number of things listed in the post isn’t remarkable because it is large but rather because it is so small.  Some of the omitted material was too bawdy.  Some relied on connections between seemingly unrelated things.  But most of the omitted material was funny only in context of my personal experience.  I laugh out loud recalling those but nobody else would get the joke so I struck it.  The post is what’s left after all that culling.

Sorry for a long-ish answer to the seemingly simple question of “How can all that go through your head in 5 seconds?!”  I figured the seemingly simple response of “how can it not?” didn’t do it justice.

I have all of the issues mentioned to some degree or another but can usually do a good job passing. But not always. Last month on my first week of a new consulting engagement my client’s project manager said there was a “coffee social” going on.  He invited my colleague AJ and I to walk down the hall for a chat and to get some free coffee. I don’t drink coffee but I’ve learned that when the client wants to chat you go chat.

We turned a corner to the break room to find 30 or 40 people either waiting to get to the free coffee or milling around nearby drinking coffee and talking. The cacophony of voices presented a threshold beyond which if crossed would render me completely unable to follow any single thread of conversation. Though invisible, it felt like a force field barring my entry to the room. I could enter but navigating that space would be like swimming through gelatin.

There would be no chat if we went in. At best I’d leave the client wondering what might be wrong with me. It would cost me a lot of spoons no matter what else happened. A crowd like that can be debilitating given more than a minute or two of exposure.
If you don’t know about Spoon Theory, go read this now. Go on, Ill wait here.

Finding myself unable to walk into the crowd after coming this far, I had to give the client an explanation and told him about my autism. He reacted with the same incredulity I’ve come to expect, and gave the same example everyone else does:

“But you speak at conferences. You talk on stage in front of big crowds. How can you be autistic and do that?”

Not more, not less, just different
This seems to be a stumbling block for many people, especially those who aren’t accustomed to taking the podium in front of a crowd. I have a theory about this which I hope is one of those rare revelations that will blow your mind:

When practicing theory of mind – that act of trying to understand another person by imagining their thoughts and perspectives – I believe we begin with a model of ourselves and then figure out how much to add or subtract from various traits to approximate the other person. We assume that people differ by degree rather than by kind.

It probably sounds too simple or obvious to be profound but let’s explore the implications of that statement for a minute. If the point of reference for all experience is always our own mind, then instead of understanding the totality of another person as a separate and unique entity, we tend to perceive another person as the specific set traits that differ between us and that person, as well as the degree of those differences. Start with you, add some things here, subtract some things there, end up with me.

If this is accurate we might think of an autistic person as “like me but…”

• More sensitive to sound, texture, lights, smells, etc.
• More literal thinking
• Less able to parse body language
• Less theory of mind
• Less empathy
• More aloof
• More self-absorbed
• Etc.

The problem with this model is the initial assumption of “like me but with…” and it explains why it is so difficult for the average neurotypical person to reconcile my autism with my public speaking. There’s an almost universal assumption that a person with autism would be “like me but with heightened stage fright.” The foundation for that belief is that perception of autistics generally as “like regular people but with varying degrees of deficits” since autism is widely considered a disability. (Thanks for nothing, Autism Speaks.) To most people stage fright is anywhere from normal to debilitating. Whatever else it means to be autistic, less ability to handle that stress is surely an autistic trait. Right?

Breaking the mental model
Not only is that wrong, but its incomplete. People who object that my public speaking doesn’t reconcile with their idea of autism typically picture “public speaking” as the time spent behind the podium. They don’t tend to consider the time before or after the presentation. That makes all the difference.

I typically can’t attend sessions immediately before or after my own or take meetings in those time slots because to do so would incapacitate me. I assure you that “incapacitate” is an accurate description and used intentionally here. During the session before mine I often find a quiet spot close to the presentation room so that I don’t have to navigate the halls immediately before I go onstage. After the session I’m usually surrounded by people wanting to talk or exchange contact information and this happens while I’m hurrying to pack up and clear out for the next speaker. We then adjourn to the hallway where we are forced to continue the discussion in a noisier, more crowded environment. If it didn’t come off as creepy, I’d invite these people back to my room where we could talk in peace.

The mental model of other==me+- tends to work only when many traits are mapped and most of the ones that go unmapped are close matches.

Start with alien and work back
What if instead of assuming others were fundamentally like us, we begin with the assumption that they are alien but with some overlapping motivations and behaviors? Most people are comfortable with the idea that we should not ascribe human emotions and motives to animals. We may like to think our cat is embarrassed and would tell us “I meant to do that” when strutting away after a fall, but if pressed most people would consider the idea that the cat probably just recovered and continued on its way. Animals may express behaviors that are similar to ours but these usually come from completely different motivations. If they did not then everyone would be a “dog whisperer” or “cat whisperer.”

Does it seem wrong or offensive to explain autism in terms of cat psychology? Perhaps but the problem with that scenario isn’t suggesting that autistics are inhuman (which I’m not), but the very idea of “human emotions and motivations” as if those were homogeneous across the species. Maybe it’s time to ask ourselves why we are generally willing to accept that an animal’s motivations and feelings are completely alien to us but not that those of another human might be.

Aliens among us
At the conference it’s not that I have more anxiety in the hall and less on stage than you do, but rather that our anxieties arise from completely different sources.When you look out on the crowd the eye contact is meaningful. It is said that the majority of human communication is non-verbal and you are swamped with that rush of simultaneous input from every individual in the room. You can tell a lot more than I about what they are thinking and it’s mostly about you.  Normally you can parse one or a few people focused on you and respond to them individually and appropriately. It’s second nature to you and difficult to turn it off so in the presence of 50 people you strain under the tidal wave of sensory overload. Make it 500 and perhaps you collapse altogether.

Out in the hall between sessions you are anonymous in the crowd. Sure there are lots of people pressed close trying to rush to the next session but none of them are focusing on you. There’s a lot of sensory input but no obligation to respond to anyone in real time so you filter it out. Perhaps you pull out the event program and look for your next session or scan the crowd looking for a colleague and these are not particularly difficult tasks. This, for you , is the easy part.

But for me navigating the hallways is the hardest part. In high school crowds were dangerous. While walking between classes a fist might come out of nowhere to strike my face, knocking me to the floor and scattering my books. The same bunch of guys also thought it was amusing to signal an accomplice to burst out of a classroom as I approached, “accidentally” striking me with the weight of a solid-core fire door at high speed. There was a scoring system based on whether the door struck, whether the knob struck, whether the impact caused me to drop anything, and the highest score was awarded if it knocked me off my feet. Each grading period was a “match” and the score reset each year. To this day I can’t walk past an outward opening door without putting my hand out to deflect it.

One of the reasons I was so vulnerable in the crowded halls was that the sensory overload was debilitating and this caused me to act differently than other students in that environment. I tried to duck my head down and move as anonymously and as quickly as possible, weaving through the crowd in as little time as possible without talking to or touching another person. I was obviously scared and the bullies homed in on me like heat-seeking missiles. Today I don’t have bullies in the crowd at the conference so you might think it is easier.  Unfortunately, I still experience the same autistic sensory overload as always but now it comes with a hefty dose of PTSD. Crowded hallways very quickly become debilitating to me.

Speaking is the flip side of this.  When presenting I experience the verbal communication but almost none of the body language. The attendees can be staring right at me but I don’t feel the connection to them that I imagine you do. To you they are people. To me they are attendees until and unless they speak up, at which point that individual becomes a person – among bunch of attendees. If I have any anxiety it is about people who want to make small talk before the session. That’s not a huge concern because I have the mic and the podium and I control the room. The larger the crowd the greater the social pressure to not speak up so as the number of attendees goes up, my anxiety actually goes down.

I suspect this is the complete opposite of how most people experience the conference and stage fright. So if you think I am like you but with more anxiety in the hall and less on stage that would completely miss the essence of who I am. But it does explain why people believe that my public speaking is evidence against my autism and not for it.

I’m asking you to consider that our motivations are so different as to be alien to one another and that is where it gets tricky. In the mental model of “like me but…” the more different someone else is, the more we fear or reject them. Ordinarily we reconcile this by accepting the fear and trying to find common ground to lessen it. I propose that we instead work to rid ourselves of the fear so we can embrace our diversity.

Applying the theory
Seeing me as being like you but with less stage fright makes for a more or less functional model describing how we might behave on stage and not much else. Any trait for which you do not calculate the delta defaults to an assumption of “sameness.” That assumption is often correct because you really do have more in common with me than with my cat, but when it’s wrong it can be massively wrong.

For example, if I pause in conversation you probably inventory all the reasons why you might make a similar pause and ascribe the most likely one to me. If the context casts doubt on your first choice, you go down the line until you find one of your motivations that seems to fit. If you have a dishonest streak you may think I paused to invent a lie. If you are an expert or have strong opinions on the topic, you may think the pause was due to my failure to understand. There’s an almost certain probability that whatever the motivation you ascribe to my conversational pause it will be based on the set of motivations which would generate similar behavior in you. In all but rare occasions, this calculus takes place completely in your subconscious and in real time. You simply “know” that I’m dishonest or not understanding your point. Once in a while if you can’t quite reconcile the motivations you want to ascribe to my words or actions then you stop and try to consciously reason it out, but always from within the context of your own experience.

Unless you are autistic, there’s a high probability that whatever motivation you ascribe to my pause would be wrong. Because I’m autistic the most likely reason why I take that pause is that my initial response would be socially inappropriate and I’m playing a mental chess game. I am consciously calculating our conversation out several moves in advance to come up with the “right” response. Since this is instinctive to you, chances are pretty slim that it would ever occur to you to ascribe that pause to my task of consciously running a rules engine in my head.

It isn’t accurate to say that a neurotypical person has “more social skill” than an autistic person any more than it’s accurate to say a bat has “more radar” than a human. The means by which we navigate social spaces is one of the areas in which neurotypicals and autists are alien to one another.

Going Global
As a result, the mental model of “shared human emotions and motivations” which gives rise to the model of autistic people as “like me but with less or more of certain traits” completely fails. What’s worse, when it fails it can do so silently because we have many behaviors in common and there’s a tendency to believe shared behaviors arise from shared motivations. That’s a huge blind spot. Even though it’s one I’ve been exploring in terms of autism it applies universally.

Consider that religious people tend to believe that if others not of their faith were to convert it would improve those people. Atheists tend to believe that the faithful would be improved by disavowing their god(s) and religion. The two positions seem diametrically opposed except that both groups perceive the other as “like me but less along this particular metric.”

And isn’t that pretty much how we see “other,” however we define them?

The homeless? The poor? They are like us but with less of…something. Less motivation. Less honesty. Less discipline. “If they were more like me,” we hear the talking heads complain, “they would not be so disadvantaged. Bunch of lazy, cheating freeloaders addicted to the welfare tit. Their problem is not that the system is stacked against them; their problem is they aren’t like me. They chose to be less so people like me need not care for or sacrifice for them.”

• Refugees and immigrants are other. They are less.
• The disabled are other and the “less” is right in the name.
• The elderly are other. They are less. (Go visit any care facility if you disbelieve that.)
• Foreigners are other. They are less.
• Obese people know best that more is less. They are other.
• The imprisoned are other. They are less. And if they weren’t before they went in, they sure as hell are now.
• People of other cultures are other. They are less.
• In our current patriarchy, women are less.

We take it to ridiculous lengths. Fans of rival teams?

“You bet your team jersey they are lesser humans and we’re gonna prove that by rioting.”

“Because you lost?”

“Naw mate, we won. This riot is in celebration.”

“Ummm…right. You have funny standards for ‘better’ if you ask me.”

You know who isn’t less here in the USA? Since the country is run by rich, old, white, guys, you ordinary white guys don’t have to be less. Well, you kinda do since you don’t have a bazillion dollars and can’t buy your elections at auction, but among the lesser folk you are kings of the hill. Now run along and enjoy your dominance. The adults have more important things to do – like negotiating the TPP behind closed doors and presenting it to the world as a fait accompli. There’s no cabal, by the way.

The Big Us
The About.com article to which I linked at the beginning of this post helps if you have that “like me but…” mental model. The author is seeking to map out more data points so you can work out the delta between us. According to him I am like you but with…

• Extreme sensory issues.
• Social “cluelessness.”
• Anxiety and depression.
• Lack of executive planning skills.
• Difficulty with transitions and change.
• Difficulty with following verbal communication.

I have all of those things to varying degrees.  Clearly by those standards, I’m disabled.

But what if other classes of people were not less but merely different? Lots of people have an epiphany when someone they love becomes disabled or homeless, comes out as gay, suffers depression, or otherwise makes us rethink our positions.I didn’t find out about my autism until I was in my late forties. That revelation prompted more than a few people to rethink their views on autistics.

We will all almost certainly rethink our positions on the elderly should we be lucky to live that long. Pete Townsend penned the line “I hope I die before I get old” back in 1965 and he’s still alive as I write this. How’s that working out for you Pete? Are the elderly now part of your “us”? I think they are. Has your thinking evolved on that topic? I think it has.

It’s different when all of a sudden they become us, isn’t it?

As a thought exercise I challenge you to ask yourself how you would treat your various Them groups differently if suddenly they became part of your Us then re-read the About.com article with fresh eyes. The stereotypical “absent-minded professor” is someone who lacks executive function. Shall we “cure” deficits in executive function if it means we never have another Einstein? Do we “cure” social cluelessness if it means we never have another Nikola Tesla? Or do we cure our tendency to think of people different than ourselves as deficient?

The About.com article focused on autistic deficits. It’s left as an exercise for the reader to decide whether to use those descriptions to better understand autism or to better understand people who happen to be autistic. You know who I’m talking about, right?

Us.

I highly recommend giving the post a read but some of the best parts are in the follow-on comments.  I’ll take some liberties and quote from one:

When my husband’s colleagues meet me for the first time, they’re reassured by the label “high-functioning.” They relax a bit. I’m not too weird – I can be reasoned with, unlike “those autistics.” But this also means they’re not paying attention to where they can communicate with me better, like in lowering the pitch and volume of their voices or reminding themselves to have patience with my utter lack of modulated eye contact. “High-functioning” is reassuring because it says to them “this person is NT enough that I don’t have to be reminded not everyone is of my neurotype.” But that puts the onus on me to uphold that charade, or pay the social price. And that’s not a fair distribution of labor.

I still haven’t reconciled how I feel about the labels but I’m very sympathetic with the post, especially the part about distribution of work.  I wrote about this in Why I don’t do Christmas cards“:

If I operate at a level of minimal filtering so that I feel internally authentic, most others will feel uncomfortable because the interaction will be socially inappropriate.  If I modify my responses to a greater degree, I can achieve socially acceptable results but I struggle with what feels to me like hypocrisy.  In other words, it usually is not possible for both of us to be comfortable with my authenticity and yet we can’t be friends unless *you* feel I’m sincere.

The irony for me personally is that I spent the first 40+ years of my life perceived as a low-functioning neurotypical. Sure I  have a high IQ, posses a facility for understanding complex technical systems with relative ease, and am conventionally successful (job, marriage, etc.).  But I’m also socially awkward to the point of being unintentionally rude or offensive, have panic attacks brought on by impostor syndrome, am almost completely blind to body language, and an hour in a crowded place uses up all my spoons and mortgages a few from the next allotment.

As a kid I wasn’t picked for the team. Note I didn’t say “picked last” there. Later I was bullied to the point of ending up in the hospital on one occasion and almost killed on another. As an adult I frequently wasn’t picked for the (workplace) team either.

So, trust me, my initial reaction was overwhelmingly positive.  It was a relief to be thought of as a high-functioning anything.  High-functioning autistic? Yeah, I’ll take that. In a heartbeat. Whatever that label says to others, it helped me to make decisions and take actions based on very incomplete knowledge of autism.

The problem is that we acquire knowledge of anything from a fractal, top-down approach. We necessarily begin with very incomplete knowledge but we assemble a framework of labeled categories and run with it.  As we learn more, we rearrange that knowledge structure, making gross adjustments.  We then learn more and eventually fill in fine details.  Sometimes we learn things that are paradigm changing and have to reassess everything from the high level assumptions all the way down to the fine details.

As an example of this process, when I want to go river rafting I know something about rivers – they have water, flow downhill, and many are sufficiently deep and fast for the activity planned.  But I don’t know about the particular river unless I inquire as to its watersport classification.  That tells me more but it doesn’t tell me what that river is like, and even if I’ve been there personally I haven’t experienced all of it or seen it on different days, for example before, during and after the Spring runoff.  But the International Scale of River Difficulty rating gives me sufficient information to make a decision.  The key to being able to make decisions and take actions is to use heuristics that we know don’t describe the whole but that capture enough detail to be useful.

Once we accept that all human knowledge is incomplete, we must devise a method by which we can function effectively with incomplete knowledge. For better or for worse we label because as humans it’s how our brains organize information from broad generic categories down to ever deeper levels of fractal complexity.  We use heuristics to categorize at all of these levels in order to deal with the fact of always having incomplete knowledge.  (And if we are honest with ourselves, the possibility of having incorrect knowledge.) Even extreme cases like conjoined twins have incomplete knowledge of each other.

Assuming we actually had complete knowledge of something or someone, we still can’t communicate that in a single bolus. It isn’t just about parsing the information internally, but also about how we communicate it to others and that follows the same top-down fractal process.

Shortcuts, in a sense, are all we actually have.

We can never get rid of them, only think deeply about the effects of the ones we choose to use or not.

Growing up in Klan country, I was indoctrinated with all sorts of labels that I eventually realized were harmful not merely to others, but to me as well.  When I sought to purge myself of these I ended up temporarily with the common refrain “I’m not prejudiced, some of my best friends are black!”  Eventually I realized the problems with that and worked to eliminate all racial references from how I routinely think about people.  One of my former colleagues is also a former football player.  Another is a former teacher.  It really doesn’t matter what their ethnicities are since knowing about their previous vocations tells you much more about them.

Both of us still have incomplete knowledge but my introduction of those people to you starts at the highest levels of the fractal tree and works its way down to finer grained knowledge.  Depending on your interests you might be drawn more to the football player or the teacher. When you ask about one or the other of them you take action based on incomplete knowledge.

I’m guessing Dani’s husband uses the high-functioning label as part of this walk down the fractal tree.  We can’t introduce the topic of autism without having a path to walk from the upper-most fractal layers down to the fine detail, one layer at a time. It is jarring to attempt that by skipping several layers, and possibly detrimental to further communications.

That is, in fact, one of the primary ways in which we autistics are socially awkward: we do not tailor the level of information to the audience.  When the other person wants the executive summary, we go off on a 9-volume treatise.  On trains.  Or Star Trek.  Or birds.  You name it, we think you want COMPLETE KNOWLEDGE OF THE SUBJECT NOW, when of course you don’t.

So what’s to do? Sometimes we have to abandon specific labels because they are based on incorrect information.  Other times the labels are so incomplete as to be useless for making decisions or taking action.  They aren’t wrong, just not useful.  Sometimes we abandon labels because they are intentionally deceptive, like when a marketer names a scent “ocean breeze” and it’s really just wax and chemistry that vaguely smells of salt and decaying seaweed. That label is more about what is evoked in your mind than the reality of the experience.

Which, I believe is the heart of Dani’s objection.  The qualification of “high” does not exist without the corresponding “low.” Neither tells you what you need to know about the person to which they are applied and in this case the implied “low-functioning” autistics aren’t even part of the conversation.  The term assigns a measure of human worth to them, then subjects them to a bit of taxation without representation. Isn’t that supposed to be something we don’t like? At least here in the USA where I live?

The “high-functioning” autistic doesn’t fare well in the usage either. As Dani notes, it’s the top of a scale that, at least in this level of the fractal knowledge tree, is perceived to not overlap with the lowest functioning neurotypical. Well, that pretty much sucks for all involved. Autistic isn’t “less,” but rather “different.” Sure, there are those among us whose autism is functionally crippling. Go to any nursing home and you’ll find people whose age is functionally crippling. Guess what, if we are lucky enough to live that long and not die of infectious disease or trauma, all of us are eventually non-verbal and need assistance with daily activities. When that’s you, how do you hope people will treat you? With compassion and dignity? Or as something less than fully human?

Unfortunately we can abandon specific labels but we can’t abandon labeling and we can’t rappel down the fractal tree, skipping many layers at a time but expecting to be understood nonetheless. Maybe someday the label “autistic” will convey sufficient detail at the top of the fractal learning tree that it doesn’t need a qualifier. Maybe we will come up with something better.  I know Dani will be thinking about it and thanks to the blog post, so will I. But I hope Dani will forgive me if I keep using “high-functioning,” perhaps a bit reluctantly, until we have that new label.

By the way, the answer to the question in the title is no. A “functioning autistic” implies a “non-functioning” autistic which is worse than what we have now.

I’m sympathetic to Dani’s stance but I don’t know what to do about it yet. Except to bat it around among people who care enough to give the matter serious consideration. If you got this far, I’m thinking that includes you.What are your thoughts? Where do you stand on the functional labels and why?

Many of the items are on the list because I have at one point gone off without them.  If there’s one thing my wife hates, it’s overnight shipping a laptop power adapter to me.  she did it once, then added it to the list.  If there’s one thing I hate, it’s seeing how much it costs to overnight ship something to me. When I saw the bill, I invested in a docking station so I never have to use the power cord while at home.  If it stays in the backpack, I can’t leave it behind.

My alternate strategy is to keep multiples of most important things in my backpack in case I leave one behind.

• Extra eyeglasses?  Check.
• Extra USB cables and charger?  Check.
• Extra pens? Check.
• Extra batteries in AA, AAA, Samsung galaxy, and Sony N?  Check.
• Extra medicine in case I can’t get home?  Check?

You get the idea.

My wife is keeper of the list.  I get to scratch stuff off occasionally.  Like the bluetooth headset that never seemed to hold a connection between my ear and my belt holster.  But she’s in charge of adding stuff.  After this trip, I think I’m going to see a few new items on the list.

“Your trip go okay?”

“Well, sort of.  The flight and hotel were fine but I have a good news/bad news situation.”

“What’s the good news?”

“No ironing at the hotel!”

“And the bad news?”

“No shirts.”

Yes, that’s right.  I’m on a consulting engagement, working at a client’s office for the next 4 days, and I have exactly one shirt.  At least it’s winter and I won’t stink it up before replacements arrive.  The good thing is that with Amazon Prime, I can get new shirts in two days and pay less than one FedEx shipping fee.  It’s a purple shirt, too.  If I’d worn the white one it might not even be noticeable.

So, what happened anyway?  My wife had done the dress shirts the night before and left them hanging in my office for the final dry.  She does this thing where she takes them out damp and hangs them and they never wrinkle.  I stuff them into a suitcase and compress them so that by the time I arrive at the hotel they appear to be heavily pleated.  Then I iron them in the hotel on the first night.

Normally, I pack up right before I leave.  I do this 30 ~ 40 times a year so it’s routine and takes about 10 minutes. Except this time I knew she’d be napping right up until I left so I packed in advance and had everything except the shirts ready to go.  The idea was to grab them when they dried, stuff them in the suitcase and hit the road.

That little wrinkle in my routine – packing in advance and not all at once – totally threw me.  I know that next week before I leave there will be a few new items on the checklist inside the front door:

• Socks? Check.
• Underwear? Check.
• Pants?  Check.
• SHIRTS?  Freaking shirts to wear to the office?!?!?!  Check.

Which is fine as far as it goes.  That list saves me from something almost every time we review it.  But it’s her list.  The item on my list that isn’t really new but is newly refreshed is a bit more generic: don’t break the routine.

Come to think of it, there is one new item on my list.  If the collapsible suitcase seems remarkably small and light, if it zips closed without complaint, if it seems to good to be true… it probably is.

Monika Bickert, Facebook’s Head of Global Product Policy and Justin Osofsky, their Vice President of Global Operations co-wrote this letter about Facebook’s Community Standards. Among the principles they claim Facebook is guided by are:

Keeping you safe. We have zero tolerance for any behavior that puts people in danger, whether someone is organizing or advocating real-world violence or bullying other people. Requiring people to use their authentic identity on Facebook helps motivate all of us to act responsibly, since our names and reputations are visibly linked to our words and actions.

 

Yet after 1,000s of user reports, the Facebook page Families Against Autistic Shooters remains up. The user ID behind the page is “AutismKills” which indicates the position the page takes. It isn’t against “Autistic Shooters” as claimed but against autistics. There are repeated false and inflammatory claims on the page of a causal link between autism and mass murder. The page openly suggests autistics should be feared and implies incarceration or euthanasia of the entire population as a response to mass shootings.

And while Bickert and Osofsky claim Facebook’s real name policy protects users, the page is completely anonymous. There is no accountability whatsoever to the person responsible except through Facebook’s community reporting.

And how did that reporting go? Report after report is met with boiler plate text explaining that the page does NOT violate Facebook Community Standards.

• Nothing on the page is directed at a specific individual so it doesn’t violate the Direct Threat clause.
• It falls short of qualifying as a criminal or terrorist group so doesn’t rise to the requirements of the Dangerous Organization clause.
• The Bullying and Harassment clause requires that the actions identify a specific, private individual.
• The lack of threats to specific individuals does not trigger the Attacks on Public Figures clause.
• No overt criminal acts are proposed.

But this page and others like it DO serve to make Facebook unsafe for autistic people. It identifies an entire disability population as the pool from which mass murders are produced. It suggests that if we did away with autistics, we will be able to stop mass murder.

Does the page make autistics unsafe?

• It causes direct emotional harm to autistics who encounter the page.
• It fosters open hostility towards autistic people far beyond the source page.
• It emboldens people to take real-life actions against autistics.
• It diminishes job opportunities for autistic people by implying risk.
• It perpetuates a climate of sympathy for parents who murder their autistic children.
• It dehumanizes autistics as unworthy of any basic human rights, especially that of safety.
• It diminishes the chance for autistics to participate in society at whatever level they are capable.

This last is doubly unfortunate because many in the autistic community make their closest bonds online. Some are non-verbal, others socially anxious to the point of disability. The ability to compose posts at one’s own pace fosters a dialog between autistics, their community, and the rest of the world. If there is one place autistics can function as part of a community, it is online in the digital world.

Except that this is also the venue within which bigots can organize communities of hate against autistics. The truth is that autistics are far more likely to be victims of violence than to perpetrate it. I nearly lost my own life to school bullies on two occasions. They were supported by a climate of acceptance which saw their actions as acceptable. This Facebook page perpetuates and amplifies that very climate of tolerance of violence and discrimination against a vulnerable population.

Ms. Bickert and Mr. Osofsky, you have failed to live up to the promise of zero tolerance for behavior that puts people at risk.

Your policy of narrowly defining risk as that which applies to specific named individuals has utterly failed the autistic community.

Your Real Name policy has failed us by allowing the page administrator to post anonymously with complete immunity from consequences.

Your narrow definition of bullying, hate speech and Zero Tolerance has failed the world’s entire autistic population all at once.

Your Community Reporting Mechanism has failed us this weekend by the thousands.

You say that “our goal is to create an environment where we don’t need a lot of rules, and people on Facebook feel motivated and empowered to treat each other with empathy and respect.”

So long as the administrators of pages like Families Against Autistic Shooters have no incentive to treat others with the promised empathy and respect, then you, personally Ms. Bickert and Mr. Osofsky, have failed us.

As an autistic person whose job prospects and safety both online and off are directly harmed as a result of this page, you have personally also failed me.

I hope that you will consider how Facebook’s Community Standards might be improved to cover bullying and harassment of vulnerable groups in addition to whatever protections are now afforded to individuals.

I am trying to learn about the mechanics of publishing books and, as you may have picked up, I tend to learn best by doing things hands-on. With this in mind, I undertook to self-publish a collection of blog posts from The Odd is Silent and Ask An Aspie, focusing on those that are humorous and/or about autism.

As you may have also picked up on, I don’t do anything without an element of fun, and often that fun comes at my own expense. Which is how you can help. I would like to have quotes about the book from other authors to put in the “praise for this book” section  – these will be anything but. For example:

• That you didn’t actually read it.
• I paid you for the quote. (I will actually give you $1 if you require it for this to be accurate.)
• Conversely, that I couldn’t possibly pay you enough to waste your time reading it.
• I’m not as funny/autistic as I think I am.
• That you don’t want your name associated with it. (Which would be its own joke because of the attribution of your quote.)
• Any of the usual criticisms of my writing (too long, wrong audience, etc.) or the inverse (not long enough, insufficient detail, etc.)
• Basically anything funny you can think of that doesn’t indicate you read any of the content, or that explicitly states you didn’t read it.

I guess in a way I’m self-publishing my own roast. Do you want in on this? I would be eternally grateful. (Where “eternal” = however long trade paperback print stock lasts these days.)

Based on the types of quotes I’m looking for, reading the book isn’t actually necessary. In fact, if you follow the blogs, you have read the book. However, I’ll happily send a PDF to anyone who wants one (or post it for download), and send a dead-tree version on request to anyone who contributes, once I get it to print.

Replies to this post will be considered eligible, however feel free to send them to me at outofmygourd@t-rob.net if you prefer privacy. If you know of other writers who would think this is funny (I miss CJ, he would probably have jumped on this), the more the merrier.

Apologies for the double posting if you subscribe to both blogs.

Thanks in advance!

My 18 year old daughter is high functioning autistic and about to graduate high school with high honors. She does NOT want to go to graduation. As she so reasonably says, she will get her diploma anyway so why go through the anxiety of the ceremony. I am torn on how much to push her. The school is wonderful about making accommodations for her. Any thoughts about this?

My immediate response was to let the girl decide.  But then I thought about how different I am today than the unemployable, abrasive, and socially inept teen who preceded me.  So I still say let the girl make a decision and abide by it, but also approach it with a specific strategy.

Sometimes people say no to an opportunity because once the commitment is made, backing out later creates some cascading impact to many other people. So the first thing to find out is what happens, exactly, if she says yes and then backs out at the last minute.  It might be as simple as notifying someone who crosses her off the roll before they start calling names. That’s pretty low impact and if that’s the case she could make plans to attend, show up to the event and check it out, then if she’s overwhelmed, duck out and notify the appropriate person.  Even if there’s a bit more impact such as buying tickets, it’s still worth taking the gamble so long as the investment made and impact is truly disposable.  Don’t buy tickets, for example, unless you can afford to not use them without too much hardship.

Also, if possible check out the venue ahead of time. Find out where there’s a quiet room or green room. A baby nursing room is an option I don’t have but she might. Familiarity may breed contempt but it does so by first reducing anxiety. Also, where I live graduations all cycle through the same handful of venues over a week or two. Perhaps she can go to one ahead of her own as a spectator to get a feel for the dynamics of the crowd and the flow of events.

The idea here being to get as far down the road as possible to accomplishing the task, then back out only when she knows that it is too much instead of because she thinks it might be too much.

If she practices this consistently then she might not attend graduation, but will gradually learn where her boundaries are, how to push on them, how much to push on them, how to recover after pushing on them, and so on. None of these skills can be learned by deciding ahead of time that it will be overwhelming and then not making the attempt.

I’m not a doctor but I am speaking from personal experience.  In 2006 I took a job that required me to travel up to 40 weeks a year, and I hated the airport.  The crowds are suffocating and the serpentine lines even more so.   The first time out I took one look at the departures hall and ran for home. We had to reschedule the assignment and I did eventually go. By the time I landed I was so stressed out I could barely talk to the client.

But I kept at it and came up with some accommodations for the anxiety.  Eventually I was able to work by flying out each week a day early so I could recover in the hotel before going to the client.  This solved the problem at the client so I was able to keep my job, but not my problem at the airport.

My wife suggested I should leave for the airport earlier in the day thinking the rush of getting to the gate at the last minute was the problem.  To our surprise, this only made things worse. But because I made myself keep going, I eventually figured out that a airport club membership and TSA pre-check solves the problem. No security lines and then once I get past the checkpoint I go work in the club until my flight is ready to board.  Then when I arrive at my client straight from the plane I’m ready to work and I also get an extra day per week at home.

That first day when I ran out of the airport could easily have been my last day at that job. But after getting that far, I knew what to expect the second time and it wasn’t so overwhelming. With time and experience I next figured out how to solve the work-readiness problem, and that let me keep going until I eventually solved the airport problem.

It was an incremental progression achieved by taking, and then tenaciously holding onto, a little bit of new ground each time.  The key is to get as far as you can each time and that point should be far enough outside your comfort zone to be challenging, but not so far as to traumatic.  It is for the Aspie brain what working out in the gym is for the body.  It’s a strategy and it works, to the extent that you work it.

But beyond that, “they have now developed a software architecture that could enable Hector to see himself as others see him.” In other words, they gave it theory of mind and their ultimate goal is for it to be able to sense the intentions of humans and take these into account when formulating responses and actions. They want it to be self-aware. Though the rest of the world will probably see in this the parallels to Skynet of Terminator fame, to me the more interesting part to me is the notion that it will sense human intention.

Perhaps this is because the current crop of “smart” devices seems very autistic to me. Though they have a wide range of apparent intelligence, they respond only to what they can directly sense, and only within a context of which they are the center. The inability to make inferences about humans, and in particular to understand their intentions, is a typically autistic cognitive deficit. While it is possible to emulate this to some extent, it is often perceived as inauthentic and creepy, which may be why I write about it so much.

Bielefeld University’s robot Hector is close to being self-aware

The quest by the marketing industry to provide targeted messaging tailored to your specific interests and intentions very much parallels the autistic experience. Any given product or brand seeks to better understand how it is perceived by humans. Or to put it another way, products and brands lack theory of mind and the ability to infer human emotions and intentions from non-verbal communication. They lack cognitive empathy

Like any autistic person, they attempt to mitigate their cognitive deficits by gathering data, observing reactions, forming a model of human behavior, calculating appropriate responses, then improving data sources and refining the model over time. When humans do this we call it vocational training and independence skills. When vendors do this we call it ad-tech. Both groups tend to wonder why people at large often perceive it as creepy.

But it is worth wondering whether this is appropriate.  Certainly it is intuitive because in a world where as much as 90% of communication is non-verbal, the expectation is not to have to accommodate those with cognitive deficits, but rather that they learn to overcome the deficit.

Body language is an oxymoron

But if you are autistic or know someone who is, how often have you said or heard “why don’t people just say what they mean?”  But in neurotypical society the first rule about the rules is you don’t talk about the rules.  Among neurotypical people, telling people what the rules are destroys authenticity.  It creates the assumption that the person’s words and actions are merely a reflection of what you want from them.

But that need not be the case with commercial transactions.  As Doc Searls explains in his book The Intention Economy, using brute-force computing power to analyze your behavior in order to guess your intentions is grossly inefficient.  It would be easier to implement a system in which you can just broadcast them.  Or intentcast them, as he dubbed it.  Vendors are starting to embrace the concept and discovering it actually works.  Let us consumers tell you what it is we want, gather that info en masse to minimize sampling error, and then go produce and deliver it.  That works.  Who knew?

Hector the robot at Bielefeld University is essentially autistic. With the addition of self-awareness and the ability to infer human intentions, Hector may cross the line to creepy. We’ll find out shortly.  Much will depend on how he is architected and what our expectations are in terms of robot authenticity.  Is that even a thing?  Can a robot be “authentic” in the sense that humans are expected to be?

JT (Jibo Terrestrial) phone home!

The consciousness of most of our iconic sci-fi robots like C3PO and Robbie was modeled after that of humans – it was self-contained and part of the robot itself. Even though the Star Wars bots could access the networked world, they didn’t send their sensor data back to a central mother ship to be interpreted, processed, and turned into instructions for the robot to follow, then transmitted back. Everything happened locally. Contrast this with our real-world robots that use the mother ship architecture. Siri, Cortana, Alexa, Google [x], Jibo, Pepper, etc. all phone home more often than ET. If you use these products, their vendors have access to all the data they send back to the mother ship. Because that data is potentially very valuable, it would be naive to believe that it will be discarded once its benefit to you the user has been realized.

It remains to be seen how the software coming out of Bielefeld will work, but one hopes that some aspect of self-awareness will be so incompatible with processing latency as to strongly favor local processing. If that is true and the new robot architecture is more like science fiction of yesteryear than the science fact of today, there is some hope that someone, somewhere on the planet will finally use intention detection in a non-creepy way that primarily benefits the individual and not the vendor. It might also give us insights that will improve the lives of autistic people by helping us learn to infer human behavior in non-creepy ways.

On the other hand, if you ever read about Hector in Ad Age, we are all doomed. Skynet will have awoken. And it will have a really good deal for you.

This is cross-posted from my business blog at IoPT Consulting because of the autism connection, and edited slightly to explore more of the autism topics.  The original is posted here.

But when he did call, it was to say he had to stay overnight.  There had been some complications and he was waiting to be admitted.  Could I pick him up tomorrow?

“Sure, what time?”

“I don’t know.  The doctor said he wants to see the dressings in the morning and might install a pump.”

I believe this is one of those pumps that delivers an anesthetic drip for the wound.  Medically that’s not a big deal but there’s no telling when the doctor will show up.  Could be early morning, could be as late afternoon.

To understand the depth of my anxiety over this, you need to know that I try really hard to avoid asking for accommodations for my autism.  In fact, I almost never do.  But let’s face it, if you are my best friend it’s because you give me the gift of letting down my guard and being my unfiltered self, without taking offense at things I might say.  So this guy has seen me lose it on occasion and has a good idea of what happens when plans change at the last minute, and it isn’t pretty.

Intellectually I know that picking your best friend up from the hospital is non-optional.  Emotionally all I could think about was all the plans I’d potentially need to cancel, two of which involve other people and are at set times.  Last-minute schedule changes are bad enough.  Open-ended ones like this really throw me.  My friend knows this and the moment I ask him what time he needs to be picked up I regret it because now he’s going to be concerned about me.

That realization hit me hard.  While I’m starting to melt down over the impact on my schedule tomorrow my best friend, who was unexpectedly admitted to the hospital after what was supposed to be routine surgery, is laying on a gurney with a phone pressed to his ear, groggy from anesthetic, dressed in half a paper gown, and he’s concerned about me.

I immediately resolve to quit thinking about myself and give him the support that he needs and deserves.  Just as quickly, my brain goes into a tight loop.  I know what I want to say but my brain can’t stop thinking about the mechanics of rearranging tomorrow’s schedule.  Every time I try to put the right words to voice to support my friend, my train of thought is derailed.  Internally, I’m stuck in this oscillation unable to speak or break out.  As the seconds drag on I begin to panic and that only locks me in tighter.  What he experiences is a very long and awkward pause.

“I can probably get someone…”

This breaks me free.

“No, no, no, I can do this.”

“Are you sure?”

“Yeah, no problem,” I respond.

I’m devastated over letting him see this hesitation and tomorrow’s plans are still pressing on me like a particularly persistent child trying to interrupt a conversation, but I’m diverting maximum energy to my filters.  Externally, I’m confident, calm and assuring.  Internally, the needle on my mental fuel tank gauge is visibly sinking.  I’ve got maybe 5 minutes before there’s no energy left to divert to the filters.  I think I can pull this off.  I’m determined to.  Other than family, I have exactly one long-term close friend who I speak to regularly and he’s that guy.

“I’ve got another favor to ask.”

“Sure, how can I help?”

“Can you look in on my cat?  I was planning to be home today so I didn’t leave out enough food.”

I had arranged to be available today so this was no problem.  I was glad to be able to respond enthusiastically and without hesitation for a change.  He gave me instructions for the cat and I told him not to worry, I have it covered.  We hung up the phone and I tried to keep thoughts of tomorrow out of my head by concentrating on the tasks at hand.

Except, I didn’t have it covered.

When I tried to leave, I discovered the truck had a dead battery.  My wife was busy volunteering at Matt’s school’s Father Daughter Dance and she had the car.  I set up a charger on the truck and went back inside to try to get some work done while I waited.  But no work got done because all I could think about was how to rearrange tomorrow’s schedule.  The needle on my mental fuel tank gauge started to move again and it was already close to the Empty mark.

After an hour of waiting, the truck battery had only 12% charge and my mental fuel tank gauge bottomed out.  There were no filters left.  For anyone.  Not even me it turns out, because in the ensuing meltdown I said some things about myself that were pretty unforgivable.  Had anyone else said those things to me, the relationship would have ended.  Breaking up with myself wasn’t an option but I did manage to not be on speaking terms with myself for the next hour.

It was at this point that my wife came home.  The Daddy Daughter Dance was a big success and she was in high spirits.  I explained my situation in as few words as possible and headed for the door.  It was now rush hour and what had been a 20-minute drive had extended to 45 minutes or more so my mood had continued to tank.

“Do you want me to go with you?”

On the one hand I could use the company and under ordinary circumstances there’s nobody I’d rather spend time with than her.  On the other hand, no filters.  Foul mood.  Blood pressure probably through the roof.  I pondered her offer.  Once again, for too long.

“Do you not want me to go with you?”

“I’m afraid I wouldn’t be very good company.”

“That’s OK.”

“Look, I’m totally exhausted and I’m in a foul mood.  My best friend is in the hospital, through no fault of his own, and somehow I’m mad at him.  I’m mad he didn’t think to put out enough cat food for an overnight stay and I’m mad I have to rearrange my weekend for him.  But I’m also mad at myself for being angry at him.  What kind of monster does that?  And if you go with me, I’m afraid I’ll take it out on you.”

As I blurt all this out, I’m hoping she doesn’t notice my voice trembling or that my eyes are glassy with the tears I’m trying desperately to hold back.

“All the more reason.  I’m going with you.”

I have no defenses left at this point.  I know that if I argue, I’ll blow up and the situation will become toxic.  I try reasoning with her instead.

“If you go with me, how long before you can be ready?”

The answer to this is usually metered in quarter hours so I figured this was my out.  I’ll just tell her I don’t have time to wait.  She anticipates my objection.

“I’m ready now.”

As we drove, she talked about the new trivia game she’s been playing with our daughter, the school dance, and all the goings-on with the Parent-Teacher Organization.  Slowly, she drew me into the conversation, then dropped the bomb.

“We should get something to eat while we are out,” she said.

Not sure if this was her way of reminding me that spontaneity can be good or if she was just hungry but I was getting the message.  Plans can suddenly change for the better.

“Ummm, OK.”

After feeding the cat we headed for the restaurant.  On a Friday night at 7pm our first choice had a wait of almost 2 hours so crossed the street to a Mexican-themed restaurant we’d never tried.  The place was not so empty on a Friday night as to arouse serious doubt about the food, but not so full as to have an exorbitant wait time.  The perfect compromise between quality of food and quantity of wait, it was the Goldilocks of eateries: “this restaurant is juuuuust right.”  And it was.  The food was better than the moderate price called for and our server was top notch.  We had a great time and by the time we left, I was feeling much better.

Many years ago my wife used to have panic attacks and would sometimes lash out at me viciously in anger.  I didn’t know what exactly was wrong, only that this behavior was out of character for her and I refused to play the expected counterpart and lash back.  Instead I didn’t take anything she said personally, I didn’t let her drive me away, and I insisted that in these moments she needed more of my love and support, not less.  I would stay by her side for as long as it took, following her around or catching her in a bear hug if necessary, and eventually talk her down.  It was like a mini-intervention, and it worked.  There was a lot of anxiety at the root of these episodes and my standing by her rather than dishing out equal amounts of abuse helped to ease that.

So it is no wonder that she would use the same technique on me.  The only wonder here is that I didn’t trust her enough to accept her first offer of company.  That I made her finesse her way into coming along.  She is the only person on Earth with whom I can turn off all the filters and be completely authentic.  The physical and emotional relief that brings is indescribable and precious.  I treasure those moments.  People often say things about their partner that sound corny: “she completes me” or “she makes me a better person.”  In this case it’s true.  I do not know what I’d be today if she hadn’t been shaping my life for the last 30+ years but it isn’t this.  There is no “me” without her.

I also don’t know what she had planned for this evening other than a quiet dinner at home and some TV.  She might have caught up on emails or done some prep work for the upcoming Book Fair at the school.  But whatever they were, she dropped those plans without hesitation because she saw I needed her.  Because that’s what friends do.  My best friend should not be deprived of that simply because I happen to be autistic.  My autism isn’t his fault and my not being there for him isn’t the accommodation I want him to make for me.

Thanks to my wife’s intervention this isn’t even an issue anymore.  I can say in all sincerity that I’m no longer worried about tomorrow’s plans.  My mind is completely calm as I write this.  No more meltdown, no more self-loathing, no more anxiety.  Tomorrow my best friend is my top priority tomorrow and everything else will work itself out one way or another.

My wife taught me that.  Again.  She’s awesome and I love her for that.