For the healthcare providers: About that #autistic lack of eye contact business…

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

This post is for doctors and other healthcare providers who may interpret lack of eye contact as a sign of disorder or pathology. Here’s some information that might help you better understand.

I’m sure there are plenty of people out there who don’t make eye contact because they are:

  • lying / exaggerating / hiding something
  • dealing with a health condition that prevents it
  • ashamed
  • nervous / intimidated
  • disrespectful / distrustful

In my case, however, the reasons are very different. See, I’m autistic. I have a lot going on with me. And eye contact is not the simple practice that many non-autistic folks seem to think it is.

First off, let’s talk about the purpose of eye contact — ostensibly it’s to establish a connection with another person and “read” their intentions and meanings as you’re talking with them. It helps establish deeper rapport between speaker and listener, and it offers a wealth of unspoken information about whether or not you can believe or trust what the other person is saying.

Personally, I don’t like to make eye contact with others. It’s not because I’m hiding anything, that I don’t like them, or  that I distrust or disrespect them. That’s not it at all. As a matter of fact, the more I like or trust or respect someone – the more invested I am in our dynamic/relationship – the less inclined I am to make constant eye contact.

Let’s break it all down, based on the premise of the purpose:

  • Eye contact lets you establish a connection with another person: I’m unusual, in the sense that I sense connections with others, without them needing to do or say anything. Call me ultra-empathic. Lots of autistic people (especially women) feel an intense connection with others around them, and “pick up” on emotions and states of mind just by default. So, eye contact isn’t necessary to for us to connect with others. If anything, it can confuse the situation, because quite frankly, a lot of people exude emotions and states of mind that don’t at all mirror the looks in their eyes. It feels like they’re trying to trick me — which they sometimes are — and if I make a lot of eye contact, I end up spending way too much time trying to figure out what’s really going on, than if I “tune in” to what the other person seems like, using my empathy. The less I look at you, the more I can process the non-verbal clues and cues that are the bread-and-butter of my cognition. Take it as a compliment that I’m not looking at you – not a dismissal or insult.
  • Eye contact helps you read others’ intentions: As I said above, non-autistic people’s presentation often doesn’t mirror how they seem or “feel” to me. Eye contact seems to be used to establish dominance hierarchies, which I usually find contrived and counter-intuitive. Even in the case of doctor-patient relationships, I don’t relate to the hierarchical dynamics, since I tend to know more than the average human about how my own body works, and what signals have meant what, over the course of my life. I don’t mean to be disrespectful or non-compliant, but rather logical and informed and responsible for my own health and well-being. And when interacting with doctors, who often seem to need me to relate to them in a subordinate way that makes no logical sense to me, eye contact can really throw me off. Because I sense that I’m failing in the interaction. Yet again. Utter, total fail.
  • Eye contact helps determine meanings as you’re talking with someone: Sorry, this use of eye contact doesn’t work for me. As I mentioned, non-autistic people seldom mean precisely what they say. There’s all sort of substrate of implied meaning beneath non-autistic communication which seems like a lot of extra work, with very little payoff. Alternatively, people could simply say what they mean and not be so insecure about it all. Again, eye contact with someone who is saying one thing, but clearly in a different “space” emotionally or mentally, is about the worst and most confounding thing I can imagine. Even if the provider I’m dealing with has the best of intentions, it seems that they’re so conditioned to say one thing and mean another, that it’s a lost cause to cue off their eyes for any indication of what the heck is going on. It’s much, much easier for me to listen carefully (sometimes with my eyes closed), and A) derive meaning in that way, B) visualize what’s being said, and C) collect my thoughts to formulate a cogent response. If I have to figure out what your eyes are saying and then square them with the rest of you, that leaves me no energy or resources for responding appropriately — which won’t help you in doing your work. It’s just going to muddy the waters between us, and you probably won’t feel like you understand me at all. Because “I” won’t be there — just a shadow of a reaction to the “you” you’re presenting.
  • Eye contact helps establish deeper rapport between speaker and listener: I am a highly visual thinker. I conceptualize in pictures, as well as sensations. A doctor-patient relationship is a life-and-death matter for me, and I need to really use my abilities to their fullest — which often means averting (or covering) my eyes and letting my amazing brain work in the way it does best. If I am making eye contact, I can’t use my visual thinking, and that shreds any hope of you (or anyone else) establishing rapport with me. If I can’t see my thoughts in my mind (when my eyes are busy decoding another person’s expression), I almost can’t think. Ironically, autistic people may have a deeper rapport with others, than those others are able to muster. We often cue off the sense of another person — if they’re nervous, angry, anxious, impatient, trying their best to do a good job. Please don’t get insecure or nervous. I (and many other autistic folks) can clearly sense what’s going on with you, even if you can’t. It’s like we have x-ray vision into your soul. Again, don’t be nervous. You’re not nearly as awful as you think you are. We still love you.  Probably more than you love yourselves.

The problem is, that sort of rapport tends to be inherently “lop-sided”. We may be highly attuned to you and your state of mind/spirit, but the circumstances of the doctor’s office surrounding us are chipping away at our ability to be fully present, ourselves. Sensory issues get worse with stress, and the life-and-death-seeming urgency of the doctor-patient dynamic heightens my sensitivity to those god-awful overhead fluorescent lights, the intrusive odors of medical supplies, the echoes and reverberation of instruments on an examination table, and the uncomfortable feel of a scratchy “johnny” that’s open in the back and is distracting me with cold air blowing between my shoulder blades and feels like it’s chilling my vertebral protuberances, one bone at a time.  So, while you’re trying to interact with me and get a sense of how I am (and who I am), I’m so distracted, shut down. and in sesnory defense mode, just trying to not screw up again, that you’ll probably never get a clear view into who I am, what matters to me, or how best to help me stay well and whole in an unaccommodating world. Of course, you’ll never realize this, because I’m well practiced at presenting as a “regular” person, who’s just a little bit scattered. It’s a defense/survival mechanism that only works a little bit. But it’s usually all I have.

  • Eye contact offers a wealth of unspoken information about whether or not you can believe or trust what the other person is saying: For all the reasons above, it can be difficult, if not impossible, for you to read my intentions based on eye contact. I’ve been accused of malingering, exaggerating, concocting maladies to get attention from a paternal authority figure, as well as over-reacting. I’ve been under regular care for chronic pain, which was never alleviated by any of the meds I was given. I’ve been put through so many tests — MRIs, EEGs, ultrasounds, blood draws, etc — and yet I’ve spent most of my life in some sort of pain and distress that was never actually understood or addressed. Given that I’ve been not only accused of so much bad behavior, I’ve become conditioned to expect it — though I’ve never gotten used to it. At the same time, I’ve rarely gotten the help I needed (the one doctor who actually helped me, died a year ago, and I’m not sure I’ll ever find another who can understand or help me). So I come to the doctor-patient interaction feeling like a total failure, to begin with. And I’m not entirely sure I even deserve to be taken care of. Nobody seems to understand the nature of my situation — my sensory issues, my thinking style, my intentions — let alone accept it as just how and who I am. The don’t seem to think it’s necessary to even try. So, why would I think that I matter? Or that I am entitled to the kind of care that others just take for granted?

I apologize if I’m bumming you out. It is a bummer. Fortunately, you probably don’t have to live like this, so that’s a plus. For me, it’s just how it is. And I address this all as best I can. But I don’t have much hope of the kind of interactive success that others just take for granted. Doctors don’t seem to receive the kind of training that helps them “get” patients like me.

So, we end up at odds… In no small part due to the eye contact issue.

This can all be fixed, however. One doctor at a time. One intention at a time. One small action of kindness and generosity at a time.

Just not jumping to conclusions about my intentions, when I don’t make eye contact… that would be a start.

We can work from there.

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How I untrained my system from #autistic rage

clouds of storm with sunset
So, yeseterday, I discussed how autistic folks can get so acclimated to outrage and fight-flight responses, that our systems become inclined to treat a lot of stuff like a threat, when it’s not. And we can react with intense self-defensiveness towards others who don’t actually mean us any harm… which doesn’t really help anything or anyone, including us.

I should know. I didn’t go into it much before, but once upon a time, I was pretty tightly wound, and I took just about everything unexpected as a threat that I needed to fight and overcome, even dominate. That worked well for me in the workplace, where that sort of behavior is rewarded. Everybody loves an independent contributor who’s “all over it” and attacks problems and challenges like they’re a mortal enemy which must be subdued.

But lemme tell you, it did a number on my nerves. And it made me miserable to live with outside that workplace arena. I was wound extremely tightly — and I literally did not know how to relax. I was on constant edge, and that didn’t help my sensory issues at all. If anything, it made them worse. It was entirely counter-intuitive. The stress that relieved me by shutting down my hypersensitive system (shunting my energy and attention to pure survival-related activities), also heightened my sensitivities. So, I ended up on a roller-coaster of rage. For years. It wasn’t the happiest of times for me (or my partner), but somehow I/we got through.

I promised yesterday that I’d talk about how I’ve learned how to “de-condition” myself from that knee-jerk reaction of RAGE, and now I shall.

As I said before,

I’ve found something that works wonders for me. It doesn’t cost any money. It can be done at any time. It’s always available. It’s taken the extreme edge off many of my most pronounced autistic difficulties, making me far less impacted than I was, only five years ago. It’s literally changed my life for the better over the past years.

That something is essentially resetting my system back to balance. My system gets locked into fight-flight intensity, so I have to both trick it and entice it, and do specific things that will kick-start the parasympathetic rest-digest mechanisms. My body — my biochemistry, my neurology — is acting up, and I need to take specific steps to get my physical system operating in balance again.

I’ve dealt with a number of therapists, over the years, who promised to help me come to terms with my past trauma experiences, and their approach was on talk, emotion, “feeling the feelings”. That was incredibly unhelpful for me — it actually hurt me. They actually made things worse, because the problems they thought were in my head were actually in my central nervous system. And they never had any interest in addressing that aspect of my whole self.

I approach this from a physiological angle, mainly. After all, my autonomic system is taking over, and by definition and specialty, it doesn’t really care much about what I consciously think about the situations I’m in. It can’t care, or it won’t be able to do its job. So, I need to back off the sympathetic fight-flight-freeze-f*ck bias, and literally jump-start the rest-digest parasympathetic mechanisms in my system.

How?

  • I balance my system with breathing.
  • I practice deliberately relaxing,
  • I practice not reacting to anything… at all.

First, I start with my breathing. It’s the one thing I can control, at any point in time. And your autonomic nervous system actually responds to your breath. If you speed up your breathing, it’s like putting your foot on the gas — it speeds things up. Your heart starts to beat faster. And your system gets more oxygen and gases to work with. If you slow down your breathing, you can slow down your pulse, and as you exhale, your it signals your heart to slow down a bit. It signals the whole of your system, actually, alternately prompting the sympathetic and parasympathetic nervous systems to do their respective jobs.

In a tight situation, when you want to slow down the fight-flight escalation, it might seem like a good idea to focus on slowing the breath to take the edge off. And that’s one way to do it. Are things getting frantic? You can manage your body’s functions by breathing in a certain way. The thing is, that direct intervention approach requires me to constantly monitor my situation and manage my state — which is not always possible, because of all the sensory overload that’s tweaking me within an inch of my life. If I think of it, I can slow myself down. But when I’m in a bind, I’ll be damned if I can be present-minded enough to take those steps.

What I seek more, is overall balance — strengthening my underlying system and training it to naturally return to balance (which it does). A healthy heart has “heart rate variability” — the heartbeat speeds up and slows down naturally, as part of the ongoing rhythms of SNS/PNS activation. It’s completely normal for things to get fast, and then slow. And in fact, it’s a hallmark of health. Rather than getting rid of the highs in favor of the lows, I focus on helping my system handle both sides of the proverbial pendulum — deal with the fight-flight situations when they arise, and then return back to rest-digest state after the perceived threat / drama / challenge has passed. Because that’s what it’s designed to do.

So, how exactly do I do this?

It’s fairly simple. I just balance my breathing in steady, equal cycles of about 5-6 full breaths per minute, as described by Stephen Elliott at Coherence.com. I breathe slowly and steadily, counting 5 seconds for each in-breath and each out-breath. I also leave a second or so between each in/out breath. If you’re breathing more frequently than that, Elliott says, you’re hyperventilating. And you’re putting yourself into a sympathetic bias (fight-flight) state of mind and body.

I’ve had to retrain myself from that over time. I tend to take shallow and/or irregular breaths, and a lot of people (especially yoga folks) have criticized me over the years for doing that. Whatever. Finding fault with how I breathe has never been particularly helpful or productive for me. If anything, it makes things worse. Rather than criticizing myself, I just practice slow and steady breathing on a regular basis. I used to do it every morning when I woke up, sitting zazen for a little bit. I still do that, now and then, but mostly now I do it whenever I feel the need — and it can be anytime.

Like right now.

I also focus on breathing in my belly region. I fill up my belly before I fill up the tops of my lungs. I work my way up, and then breathe out in the opposite order — first fill belly, the fill top of lungs, then empty top of lungs, then empty belly. This stimulates the vagus nerve, which it closely associated with the parasympathetic nervous system (rest-digest).

Second, I consciously relax. I don’t know how to do it naturally, so I have to practice this a lot. It’s a learned skill with me. For most of my life, I could NOT relax. Now and then, I could manage something like relaxation for a few minutes, but I was so constantly assailed by everything in my life (sensory input, confusing social situations, disrupted routines and patterns, etc) it made more sense to be on constant alert, so I could react and adapt as needed. Within the past 10 years, I’ve actually learned how to relax again, and I do a couple of different things:

  • Progressive relaxation – feeling my toes relax, then my feet, then my ankles, then my shins, then my knees, then my thighs, then my hips, then my… you get the idea. I do this usually when I am wired but need to sleep. I’m usually asleep before I get to my shoulders, although sometimes I get the whole way up my body and am still wide awake.
  • Progressive tensing and relaxing – tightening my toes as much as I ca, then my feet, then my ankles, then my shins… and so on, till my whole body is tense as a violin string, and then I relax my body back down, just letting the tension go. The tension actually triggers a relaxation response, as the muscles react to the tightening. Our bodies can be contrary that way.
  • Stretching – especially full-body stretching. It literally gets me to unwind, and my mind follows my body’s lead.

Lastly, Zazen. It sounds exotic and all Eastern, but it’s something anyone can do, and it’s probably one of the most impactful practices I have. For the record, I’m not a Buddhist, but I can relate to some of what it espouses. I tend to pick and choose what helps me, and I leave the rest. People can do what they please, but I’m not much for orthodox enforcement.

My own version of zazen involves just sitting. Not thinking about a mantra  or a koan or a word or image to focus my attention, but just sitting. Motionless. Counting my breaths and keeping them steady and balanced. I don’t react to anything I notice — an itch, a tickle, a passing discomfort, the sparkle of a reflection. I don’t “follow” thoughts that come up. I don’t indulge them. I just sit there and watch what’s happening.

I “do” zazen when I’m at work, dealing with difficult people.

I practice zazen when I’m at home, dealing with challenging situations in my marriage.

The net result is that I’m far less reactive to what goes on around me. I’ve trained myself to not get caught up in things that seem to be happening, and I find I can let go of things more easily. I should really get back to doing zazen regularly. It helps me so much… so I shall.

So, there it is. How I’ve “de-conditioned” myself from a constant state of fight-flight. I may have made it sound  simple and easy, yesterday. And now I’ve broken it down into a number of elements, none of which are necessarily quick fixes — oh, except the breathing part(s). That can help in the moment, when drama rears its hydra-like head.

Herakles and the Hydra Water Jar (Etruscan, c. 525 BC) - Herakles clubs the Hydra, while a crab assists it by attacking Herakles
I think I’m battling a hydra – but mostly it’s what’s inside my head – and nervous system

The thing I have to keep in mind at all times, is that my extreme reactions are probably A) conditioned, B) instinctive, C) neuro/physio/biochemical in nature, and D) due to other circumstances getting me all “spun up” about things — which have nothing to do with my present situation. If I’m tired, if I’m frustrated, if I’m taxed in general, I’m more likely to get cranked up and over-react. So, I have to slow down the system that’s telling me it knows best.

The system doesn’t “know” best — it doesn’t know anything other than what it needs to do in that instant to address what it perceives as a threat. That’s one kind of knowing. But not the kind I need.

So, I’ve worked for years at training my system to chill the f*ck out — automatically. I’ve strengthened my parasympathetic aspects, so they can deal with the sympathetic fight-flight stuff that comes across my path. ‘Cause it always does. Without fail. I can’t control that all the time. But I can certainly get my autonomic nervous system in shape to deal with it effectively.

And it does that a whole lot better now, than 10 years ago.

That’s for sure.

Here’s some more related reading you may find useful:

Techniques for Autonomic Balance

Related posts regarding talk therapy and Aspergers/Autism:

Reverse-engineering our #autistic rage

person screaming
We all have very good reasons to be enraged.

Over the past few months, I’ve noticed an “uptick” in the online autistic community drama levels. Of course, it could just be me… I haven’t been active in the autistic “scene” for years, until last spring. I gave it a whirl, back in the late 1990s, and again about 10 years ago, but the drama drove me away. I have a busy life with a lot of responsibilities that most folks don’t bother with and have no idea about, and I just haven’t got time for the drama.

Now, again, it starts. I see other people tweeting about it, blogging about it, emailing me about it. Ugh. It’s just so … awkward and painful and illogical, which for me is the equivalent of being flayed alive. Why can’t we all just get along?

Well, I’m pretty tired of feeling ill, every time I log on, so I’ve called up my own faculties of reason and logic to try to understand where all this aggression is coming from, why people act the way they do, what sets them off, and what might possibly explain all the drama, and why we can’t seem to get past it.  And in truth, I actually do understand why autistic folks “go after” each other, why they tear each other down, why they can be so ruthless and merciless and devoid of compassion.

It makes perfect sense to me. And while that doesn’t make it any less painful to witness (or personally experience), at least I understand the nature of it. And I’ve reached the conclusion that — until the world changes (unlikely), or we learn to constructively and proactively deal with our issues — aggressive, hostile, combative behavior in the autistic community isn’t going to go away.

‘Cause, quite frankly, that’s how we’re wired.

One of my all-consuming interests is neurology. In particular, the autonomic nervous system, which regulates our bodies’ unconscious, automatic actions. Fight-flight. Rest-digest. How those two complementary (and opposing) systems work together to create equilibrium in our lives… and how they work independently, sometimes to our detriment.

It’s complicated, but there are fundamental truths that can serve us to better understand how we work – and why.

Basically, we’ve got the sympathetic nervous system (SNS), which is about flight-flight-freeze-fun-f*cking. It’s the side of us that gets all worked up over stuff like an exciting event, a desirable mate, someone who’s attacking us, or someone we want to attack. Its purpose is to keep us alive — and that’s pretty much it. It’s specially designed to set priorities in our overall system’s functions, to use our energy and resources for keeping alive and breathing.

The SNS shuts down certain “unnecessary” functions in our body that don’t have anything to do with just escaping an immediate threat. Adrenaline, ephinephrine, norepinephrine, and other stress hormones flood our system, essentially hijacking our energy to serve a single purpose: to survive. All available energy goes to the parts of our system that keep us alive – shutting down “unnecessary” things like hunger, saliva production, urination… and complex thought. When you’re responding to a growling dog (or cat) lunging at you in a dark alley at 2 a.m., you don’t need to engage higher reasoning and find deep meaning in the experience. You need to get the heck out of there. Run from the dog (or cat). Or fight it.  That’s what the SNS is expert at — just dealing with what’s in front of us, not reasoning it all out.

cat hissing at a frightened dog
The danger at hand is the only thing that matters

This is all tied in with trauma (which I won’t get into right now). Every Aspie / Autist has had more than their fare share of traumatic experiences.  It seems to come with the territory. And trauma responses can be neurologically and biochemically compounding — the more we have, the more “cranked up” we get — and the more easily and quickly we get “cranked up” at the slightest provocation.

And then we have the parasympathetic nervous system (PNS), which is all about taking the edge off and restoring balance to our systems. Our PNS controls our system, when we’re at rest. It restores our body to a state of calm, gets our digestion going, relaxes our muscles and slows down our heart. We start to salivate again. We realize we need to pee. And it helps clear out the adrenaline and other stress hormones that have taken over our system, making us feel either superhuman or vulnerable and shaky – or a combination of the two.

cat lying on the ground relaxing
We need to take a break and get back to balance.

The PNS helps facilitate complex thought, allowing us the space to really consider what’s going on around and inside us, and draw new conclusions. It enables a rest-digest process, which we need to do on a regular basis, or our systems get pretty wired. And we can’t digest, both physically and mentally. And for autistic folks, mental digestion is every bit as important as physical digestion.

We autistic folks need to make sense of things. We need to understand. We need to find patterns, to better understand our world. We need to find logic — some logic, any logic — to be right with the world. And this is no small task, for the mainstream, neurotypically dominant world is usually anything but logical. But given time and opportunity, we can often do it. It may seem to take forever (a lot of stuff didn’t make any sense to me at all till I was in my late 40s). But we can do it.

The problem is — and I think this is where we get tripped up — if we’re perpetually under attack, we can develop a “sympathetic bias”, which slants our reactions to just about anything to the fight-flight side of the arena. As I mentioned above, repeat trauma has a cumulative effect, making us more sensitive and likely to respond with fight-flight. Our autonomic nervous systems become conditioned to fight-fight-fight! And our minds don’t know any better. Our conscious minds have nothing to do with it, to begin with, because the ANS’s sole purpose is to run the show independently of conscious thought. If it waits for us to think things through, we can get ourselves badly injured in dangerous situations, even killed. So, our ANS is just doing its job — to the extremes.

We autistic folks have a particular gift for extremes, and the tuning and tweaking of our nervous systems is no exception.

When we are perpetually assaulted (whether we genuine are, or we feel like we are), we get in the habit of expecting that — both in mind and body. We get used to reacting with defensive thoughts, and we become neurologically inclined to interpret every new or unexpected or uncomfortable thing as a dire threat which we must either battle or flee.

And those reactions can carry over to conversations we have with others. Or perceived slights. Or perceived threats. Or interactions which have similar patterns to prior abuse. The interactions don’t even need to BE abusive — they can just seem that way, in order for our systems to get all riled up. Don’t get me wrong — I’m not gaslighting anybody, telling them that their feelings aren’t valid. I’m just saying that our biology does a great job of getting used to interpreting stuff without any conscious thought involved — and then responding to what’s going on around us in predictable ways. If our autonomic nervous systems have gotten used to being attacked and marginalized, then our systems’ interpretationsn can be dire, indeed. And we can lash out at people who honestly meant no harm — our systems just thought they did.

This whole subject is a tricky one, especially because of the whole gaslighting thing going on, these days — telling people they aren’t really feeling what they’re feeling. I’ve been gaslighted so many times, I’ve lost count, and it’s often been by genuinely good-hearted people who were just trying to help. So, no, I’m not telling anyone their feelings are invalid.

The thing is, our autonomic nervous system is so expert at interpreting what’s happening to us and then reacting without checking with us first. It tells us things that it believes are true. It may be right, or it may be mistaken. No judgment. Just observation.

This post has gone on long enough. I need to step away, rest and digest, myself, before I come back around with a possible solution. I’ve found something that works wonders for me. It doesn’t cost any money. It can be done at any time. It’s always available. It’s taken the extreme edge off many of my most pronounced autistic difficulties, making me far less impacted than I was, only five years ago. It’s literally changed my life for the better over the past years. I’d be lost without it. And with it, I’m found.

I’ll share that in a bit… but for now, I’ll let this stand. Our outrage makes perfect sense. It’s understandable, it’s predictable, and it can be explained with even the most rudimentary understanding of the part of our nervous system that runs our everyday lives in ways we seldom notice in the moment. But it doesn’t need to ruin our lives — or our community.

More to come. Watch this space.

 

Reblogging from Sam Craft: “Aspie” Rant: Integrity within Autistic Groups and Networks


This is an awesome post!

The original start of the title was Master Mind Fu** . . . Which still works.

I abide by the philosophy of take what you need and leave the rest behind. I was taught manners and live by the golden rule of treat others how I wish to be treated. I take pride in my ability to steadfastly stand the high ground. Never have I used my influences to discount another person’s actions or works: regardless of the temptation. Never have I called out an agency or organization in a public blog post. Never have I chosen sides in the eyes of many. Some might see my acts as weakness. As people pleasing. As avoiding conflict. That’s fine. I truthfully don’t care. I know myself. And that is what matters. But I challenge anyone to live like I do for a year. To not lower yourself. To not turn one wrong into two.

It takes little to no effort to act based on a reaction. That’s how we live each second.

It takes huge reserves of strength to stop from reacting in extremes, when we believe we’ve been wronged. It takes character and self-control not to buy into gossip and not follow suit in action, with someone who is degrading and belittling you. How good it feels to shout: Fuck YOU!

Read the rest of this terrific post at: “Aspie” Rant: Integrity within Autistic Groups and Networks

I don’t mind masking… at all

angel wings
I rise… and the NT world never sees me do it. That’s fine. They leave me alone.

Seriously, people, neurotypicals are so easy to figure out.

Even if you can’t figure them out, all you really have to do to get along, is mirror them. Forget making sense of their ways. For the most part, logic has nothing to do with any of it.

I used to study them, like an anthropologist. But now I’ve learned enough to know that it’s a waste of time trying to figure them out. I’m a different species, living in their midst, making the best of it.

I’m actually doing quite well in their midst, thank you very much.

I have a kick-ass NT impression I do around them. I figured out many years ago, that they need to be recognized, and they love to be mirrored — even if it’s so blatant, it’s a little embarrassing for me. They love it when I compliment their clothing or their jewelry or something about them. And they love it when I look at that spot between their eyes, or on one of their cheekbones, while I’m talking to them. They love sing-song prosody, so I’ve practiced that. A lot. I still do practice, in fact. They love to chat about whatever comes to mind, and they feel safer when others are responding in kind.

So, I do it. And I do it well, with all my autistic skill. And I’m ultra-successful, socially speaking.

Which of course hides me from all the folks who are the gatekeepers of support and assistance. Oh, well. I provide for my own assistance. By being successful enough in the NT world that I can carve out my own Autistic corner in my own hours.

Am I “authentically myself” around non-autistic folks? Oh, no. That would be a poor use of time and energy. I’ve tried… A number of times, carefully, gingerly, briefly. I’ve given it a whirl, every now and then. But the results have always been pretty depressing. Autistic! You can’t be! You’re not “like them”! Why are you trying to get attention? Why would you want to be autistic?  All this seems to come from a state of panic with them. No higher reasoning, no complex thought. Just knee-jerk reactions designed to get the threat to their identity away from them as soon as possible. They seem to be in perpetual fight-flight mode – not a good use of my time, to join them.

Since the language they speak is the dominant tongue of my expediency-driven world, I’ve had to learn it. The turns of phrase. The gestures. The prosody. I have no interest in suffering or doing with less, because of others’ ignorance and fear. Likewise, I’m not all that keen on being their instructor / mentor / trainer about how to behave like a compassionate human being… how to “raise Autism awareness”… Nobody’s paying me to inform them — and it’s exhausting work.

Even if they do seem to get it, they’re never going to get ALL of it, because, well, they’re not Autistic.

So, I have my peace. I have my peace of mind. I have my piece of the world, and as long as I do my good impression of an NT, they leave me alone.

Which is the most that I can ask for. Just to be left alone. So I can rise on my own — on my own terms, on my own time, on my own turf, on my own wings.

I don’t mind masking. Not at all. It saves me from so much discomfort and annoyance… it’s well worth the effort.

I’m not about to turn my well-being over to anybody else

person wading through keep snow on a winter hike in the alps
I’m sorta kinda on my own, in many respects. And I like it that way.

Other people do a terrible job of figuring out what I need, and how best to give it to me. They (neuro)typically have no sensitivity to anything other than themselves, and my spikey needs tend to be an annoyance for them, anyway. The neurotypical world is designed for… neurotypicals. That’s all they know. That’s all they care about.

Eating.

Drinking.

Having Sex.

Holding down a job, so they can continue to do the above three without interruption.

That’s basically it.

I had a conversation with a friend of mine, the other day, who was so nonchalant about that myopic bias, it was breathtaking. He’s an older white, upper-middle-class, professional gentleman with a PhD and tons of honors to his name from his 40-some year career. He’s nearing 70 years old, and I have tremendous respect for him and his experience. He’s been a good friend to me for nearly a decade. So, when he said that all of human endeavor is essentially structured around making sure your genes are propagated throughout the course of history, to the widest extent possible, and nothing else really matters to the human race, I didn’t correct him. I paused — partly out of respect, partly out of wonder at why someone would say such a thing.

But thinking back, it takes my breath away, just how convinced he was of his own rightness, how utterly blind he seemed to be about any particular bias. And the irony was, we were talking about people’s unconscious biases. Huh. How ’bout that.

That being said / experienced, I become all the more convinced that autistic / Aspie folks need to fend for ourselves. We can, you know. If we band together, we can – and we should. There are so, so many autistic adults who have figured out how to live successfully in the world, find work that suits us, establish loving, long-term relationships, raise families, and do more than get by in the world.

True, true, we have many issues of our own, and many of us have suffered terribly. But let’s not lose sight of the huge accomplishments we’ve attained, all the skills we’ve built, all the tips and tricks we’ve figured out. There seems to be a tendency in the autistic community to focus on our weaknesses and vulnerabilities and shortcomings — all our excruciating collective suffering — perhaps in hopes that others will feel some sympathy for us and change the systems in the world that seem specially designed to make our lives an obstacle course extraordinaire.

What do we lose when we do that, though? We lose our autonomy. We lose our self-definition. We hand over our fate to another person, who may or may not have the skills, awareness, or even the will, to do a damned thing for us. Even if they try, they often screw it up so badly, it’s worse than if they’d done nothing.

Now, I’ve got nothing against the government acting responsibly towards the whole of the population, or organizations figuring out how to better support us. They serve valuable purpose(s). But handing over our whole health and future to others… that’s never seemed like a particularly prudent thing to do.

And again, I come back to my argument about the critical importance of the Aspergers difference — the awareness and understanding that many of us on the Autism spectrum are fully capable of taking care of ourselves, even doing so with extraordinary capability that far exceeds the abilities of the neurotypical world outside our heads and our experience.

Those of us who have Figured Stuff Out have a great gift to pass along to others, who may be struggling with the exact same issues we ourselves have had — and mastered — in the past.

So, let’s do that, shall we? I mean, we already are. Here. In the blogosphere. Also on Twitter. Facebook, too (tho’ I’m seldom there, these days). And we have a lot to share with each other. We have a lot to offer, a lot to contribute. Many of us do, and even more should. There are so many ways we can support one another with real, true, honest information that comes from the best place possible — experience. Proven experience.

Yeah, I’m not holding my breath, waiting for autism organizations or the government to come to my rescue. I guess I’m waaaay too much of a rural-raised, defiantly self-sufficient American, to feel comfortable with the government “helping” me with much of anything. Yes to justice. Yes to civil rights (including voting rights). Yes to protecting the environment. Yes to the big things that government is better at handling than individuals. But in terms of providing support for those of us in special need? That, I feel, should come from within our own community.

And yes, even financial support — funding. It’s not like there are no autistic rich people. Autistic folks have a knack for specialization and perseverating — and if that isn’t a recipe for developing skills that really, truly help one amass considerable wealth, I don’t know what is.

Of course, there needs to be some sort of distribution system in place for all of this support. That’s where government comes in, I suppose. But aside from money, when we’re talking about basic information and access to moral support, that can be gotten from the online world. And in person. Finding autistic people in our vicinity and making the effort to reach out.

But really, the most potential for support is online. Because we can find each other here. And we can connect with each other on our terms, in ways that suit our schedule and energy levels. Isn’t that why we built out the Internet, to begin with? Back in the mid-1990s, there were so, so many of us online — seemed like we outnumbered the neurotypicals. And it was a hugely healing experience for me, to be with my tribe, to find my place, to be in the midst of others who “got” me and didn’t need constant explanations of what’s what… and who weren’t put off by my quirks.

I long for that experience, again… to find a workplace tribe that’s every bit as quirky as I am, that “gets” what works for me, and doesn’t force me to do what doesn’t. I want to be able to “geek out” with others who are so completely ON the spectrum, that we are the norm, rather than the exception.

And no, I don’t want to be a token unicorn “autistic hire” to assuage the guilt of corporate overlords. I seriously just want to meld with my tribe. To be with my kind. Because it’s possible. It’s very, very possible. I’ve done it before, and I need to do it again.

So, that being said, I’m diving into some new programming languages that will get me into the ranks of those who love to geek out over numbers, just like I do. Who are as sensitive as I am. Who are as keenly intent on teasing out the truth of matters, as I am, and who don’t take shortcuts and make excuses. And whose sole interest isn’t sowing their biological seeds far and wide, so they can prove to themselves that they’re not going to disappear into obscurity for ever and ever after they die.

I’m taking matters into my own hands, and gearing up to better integrate with those like me. In places where I can relax and just be myself, and allow my abstract mind to settle into what it does best — find patterns and solutions and make beautiful magic with them.

I’m also very much into sharing what I’ve learned, as I go, so that others can benefit from my experience. And looking back on my own experiences to analyze and deduce what I can do better the next time. It’s all a process, truly. And in the end, I need to look to myself, as well as to those like me, for the support and strength I need.

The neurotypical world is too caught up in its own self-destruction, to pay much attention to me. Perhaps its best that they don’t realize I’m here, anyway. I’m fine on my own, doing my impressions of a neurotypical person, just to get by. To keep under their radar, so I can get on with my own life – in peace. Peace and quiet, joy and beauty.

Far, far from their maddening crowdiness.

Diagnosis is not an end point.

Excellent post! Diagnosis is just the beginning…

The other side

STU_1975DPP_001 Photo bu Stu Allsopp 

Diagnosis for autism was a surprisingly unequivocal call for my psychologist.

Ever since I’ve been filling in the gaps. As we approach February I’m shocked to find I’m almost a year old (diagnostically speaking). March 4th will be my birthday.

The other night I had a powerful dream that I was interviewed on national television about being autistic. To articulate what this means in public was clearly wish fulfilment of a kind. I guess I’m tired of being on the margins where I’m invisible and expected to be a good quiet autistic who continues to resemble the neurotypical person everyone (including me) thought I was.

You see I’m learning something important. I don’t want to be that person – one who has to work against my nature and cultural affinities.

Part of this is speaking up and out about everyday matters and expressing my preferences more…

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tree in snow with the sun shining above

The downside to being (autistic and) “bright”

Great, great post! I can so relate.

the silent wave

“You’re so smart; why can’t you do this or that?”

“You could have gotten an A, if only you’d done your daily work/homework.”

“I know you’re capable.”

“You can do better.”

“You’re better than that.”

Uh, thanks?  But when people said these things, I still felt greasy and heavy inside.

Because those statements aren’t actually compliments at all.  The source-person of the comments might intend them to be, but they’re not.

That’s why I felt a little “off” about saying Thank You.  In fact, I just stared, making agonizingly uncomfortable eye contact, trying not to look “guilty” but failing, because I know that somewhere, somehow, despite my most concentrated efforts, I had screwed up.  So as the seconds slowed to a syrupy crawl, I would pull all of my internal willpower together to maintain my composure, the best I could muster being that uncontrollable sheepish guilty look, the only expression…

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The Real Voice of Autism

So, so true!

Everyday Aspie

DSC_6237A speech by an autistic

What is autism?

Once I say I am “autistic,” I understand I will never be perceived the same again. And that is both my sword to bear and light to share.

There is no way to fully understand autism, unless you are autistic. But there are numerous ways to raise your personal awareness. Particularly useful are firsthand accounts by actual autistics and historical perspectives by respected journalists. While it is hard to pin down the term ‘autism’ in a short interval of time, I can tell you what the average autistic is not. They are not ‘Rain Man,’ and they are not the stereotypes perpetuated in the media. We are typically, in my experience, caring, loving human beings with great potential. And, like all individuals, given the proper support systems and acceptance, we can excel to great heights; and like all people, given repeated oppression…

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