The Hitchhiker’s Guide to Asperger’s / autistic people (*one* autistic person): A manual for non-autistic people

I’m not sure if this post is going to take on a more humorous and satirical or a more serious and educational path.  I guess what I’m trying to say here is: be prepared for anything. 🙂

Disclaimer: as usual, lest it not be a given, I’m writing this from my own perspective, based on my own experiences and knowledge base.  I’m also often short on vocabularical variety (except that I just made up a word!  Lol), which means that I might use terms or ideas that some might consider ableist or whatever.  I might use terminology that might get misinterpreted as age-based or function-level-based.  As usual, please know that that’s not my intent.  The truth is, I usually have just enough mental steam (think: spoons) to express myself pretty directly (almost to a fault).  So, please bear with me and stuff.

OK, disclaimers made, now moving on…

I wrote a previous post (and that one was intended to be light and semi-funny) that described a Hitchhiker’s Guide for spectrum peeps about the rest of the world.  This post is for those who have friends, family (including partners, children, siblings, cousins, etc), other types of significant others and whatnot, coworkers or supervisors, etc, etc on–or suspected to be on–the Asperger’s/autism spectrum (who share traits in common with me).  If you’re a non-autistic person who wants to know more about Asperger’s/autistic people (at least through the lens of one of us–me), then this post is for you.

To emphasize the point that I’m speaking for myself, I’ll use myself and my experience as the example throughout this post.

This is because the truth is, you know the Asperger’s/autistic person in your life infinitely better than I do, and chances are that what I’m writing will be nothing you don’t already know.  Or it might not even apply in your situation; we’re all different, after all.  But I’ll write it anyway. 🙂

Communication, Part 1: Getting Our/My Attention: 

Let’s start with communication, since that seems to be sort of a theme for both neurotypes.

My mum would call my name to get my attention.  Many times.

Which eventually became, “earth to Laina!” or “we have to go; we can’t fax you there!”

I had heard her the first six times (my mom is incredibly patient), and we both knew it.

But here’s the deal: I was caught up in an activity, and the momentum was pretty strong.  So I couldn’t just stop doing what I’d been doing.

It Just Doesn’t Work That Way, of course.

These days, now that I’ve discovered my rightful place on the Asperger’s/autism spectrum, I now know that this type of situation was probably fueled by a combination of Engaging in a “Special Interest” + Task-Switching challenges + Executive Function issues.

In plain terms, I was deeply engrossed in something that gave me an incredible sense of satisfaction (satisfaction of curiosity, of sensory stimulation, or whatever).  I had to mentally prepare myself to pull out of said activity.  That means finding a Stopping Point.

Finding a Stopping Point is a big deal for me.  It takes an obscene amount of energy for me to disengage myself from one task and engage myself in another.

To illustrate what this is like, I’ll use the ever-universal computer analogy (if this ends up being helpful, I’ve tagged a whole bunch of posts that use various analogies; just check out the tags at the bottom of the post and click on #analogy).

For neurotypical people, changing tasks is like clicking on today’s easy software updaters to get the most current version: a one-click flick of a mouse button and poof!–your computer knows what to do and increasingly often, you don’t even have to restart your system.  The new version is live, up and running.  On the fly.  Smooth!  Like a boss.

For me, changing tasks is like updating software in the old days.  First I have to make sure my system can support it.  Then I have to hunt down the next version.  Then I have to put my brain through an arduous, multi-step install process that asks 20 questions.  And finally, I have to restart my system from scratch.  But first, I have to save all my work, lest I lose my place.  Wouldn’t want to lose anything!

I might have been in the middle of proverbially writing a mental word document.  And my mum calling my name is like saying “shut down and restart!”

Not exactly what you want to do when you’re in the middle of working on something!

Now, that “something” could have been building a Lego town.  Or reading a book.  Or maybe, writing creative poetry…in a real word processing document.

It didn’t matter; I wasn’t ready to reboot my brain yet.  I had to reach a point where I was ready.

Enter executive function.  When told to shut down and restart, computers take their sweet time working diligently behind the scenes, organizing their data for closure, like a kid putting their toys away.  But sometimes my brain has trouble remembering where to put something.  Its shutdown process is meticulous and it often has to consult a step-by-step command sequence.

Communication, Part 2: Blunt or Direct?

Another point of misunderstanding arises from the different communication styles.

Non-autistic people share many different customs, which have collectively become the “unwritten social rules” of society at large.

It’s been said that Asperger’s/autistic people, in general, don’t intuitively share those characteristics.  This may lead others to believe that some of us have the tendency to be rude, inconsiderate, unfriendly, cold, aloof, unloving, and/or distant.

The truth is, from what I have seen, that the vast majority of us are none of these.

I prefer words and phrases like “straightforward”, “direct”, “concise”, “saying what one means”, and “telling it like it is (at least, the way one sees it)”.  The main reason I prefer these words and phrases is because they provide a more accurate description.

I was frequently accused of being a smart-ass or talking back when I was a kid.  What I said to “earn” such a label might have been an answer to a question or a response to a statement, but the end result was the same: I was thought to be mouthing off.

Most of the time, I wasn’t.  I was just stating the truth or the facts as I saw them, in as plain an English as I could think of.  Delivering these answers and responses with my unintended, patented deadpan evenness didn’t help; it really did look (to my non-autistic mom) that I was being “smart” or “getting lippy” with her.  And I was actually surprised when she responded as such in return.

Telling the truth became more like Truth or Dare.  Or maybe Truth and Dare.  As in, Dare to tell the Truth, and then wince in anticipation every time you say something.  And you have to say something, because if you don’t, well, that’s just as bad–or worse.

My mom wasn’t unreasonable, and it’s not like this scenario was daily or anything.  Nor did it result in dysfunctional family dynamics such as abuse or cold shoulders or criticism or anything.  But it did create short-term confusion and stress, most likely for both sides.  Here was my mom, parenting largely alone, with a child she didn’t realize she didn’t completely understand.  She understood me pretty well, but we both thought we understood each other more than we actually did.  We were so close, and yet our differing neurotypes set us so far apart, a distance that was not perceptible by either of us.

Communication, Part 3: Body Language, Tone of Voice:

I may not put nearly as much stock in body language (either sending or receiving) because it can be tough for me to decode and thus, it may not hold as much meaning.

I may cross my arms across my chest.  That doesn’t mean I’m closed off or uninterested, nor does it mean I’m cold or distant or impatient or anything else that a non-autistic person may imagine it could be.  It simply means I’m comfortable that way.

What else could I do with my arms?  The seemingly minor stresses of gravity’s downward pull can actually become uncomfortable for me, so I have to do something.

Well, I could always rest my hands in my pockets, and sometimes I do.  But that could be seen as low self-esteem, shyness, or weakness (I think?).  I can attest to the “shyness” part, but whatever else a non-autistic person might think it means, it probably doesn’t.  Again, it’s about comfort.

Sometimes my pockets don’t go deep enough to fit my hands comfortably.  At that point, I might rest them on my hips.  That’s not meant to be defensive or hostile or confrontational.  I’m not intending to send a combative message.  I’m just more comfortable that way.

My vocal tone can be relatively flat. This was especially true when I was younger, and more unfiltered and less aware.

Communication, Part 4: Speech and Communication Styles: 

Word choice and/or communication style can be another potential avenue for miscommunication.  Not necessarily a miscommunication solely on my part, but a mismatch between different communication styles.  After all, when an Aspergian/autistic person gets together with a non-autistic person and they begin to talk with each other, it’s like bringing Mac/Linux and Windows computers together and trying to get them to open up each other’s files, in the days before cross-platform software: it can be very slow and garbled, with lots of error messages and gobbledygook.  Lots of room for error and misinterpretation and lost attributes like formatting.  The gist of the message might be received successfully, but much of the context could be lost in transmission and translation.

Some people on the Asperger’s/autism spectrum may speak in what’s often termed “flowery” wording, which frequently takes on a very poetic, lyrical form.  It’s beautiful and raw and honest, and it highlights our different-not-less manner of thinking.  The prose can be quite ethereal, and it’s often interpreted as “dreamy”.  But those of us who connunicate like this are speaking in all seriousness.  They’re/we’re/I’m not being dramatic or looking for attention; just describing the world as they/we/I see it.

Others of us are just the opposite, speaking in a way that is extremely bare bones and direct, without mincing words.  Those of us who communicate like this are not trying to be rude or insensitive.  We’re/they’re/I’m just being honest.  We might be answering a question that seeks our input, and we’re giving an honest and unfiltered answer.  The irony here is that in our efforts to avoid misinterpretation and misunderstanding, we’re frequently misinterpreted and misunderstood.  It’s no wonder that many of us, especially those of us diagnosed later in life, feel like we fail socially.

I tend to oscillate between the two, at random, depending on my mood and energy levels.  Sometimes I don’t remember to preface my messages with, “I’m feeling poetic/direct today”, which can create confusion.

Sometimes, my speech patterns might sound repetitive.  This isn’t to be confused with echolalia (I don’t think), but it’s more of a tool box supply of a few socially acceptable stock words and phrases that I’ve accumulated over the years.

During my formative years, I constructed a mask and after many years spent quietly observing others from my comfortable spot on the sidelines, I had watched and learned. I listened to how other people communicated with each other and watched each other.  That’s how I created my memory bank of “acceptable” stock words and phrases.  I watched people say stuff; I noted how it was received; I watched how others responded; I noted how the conversation continued.  Lots of watching and noting.

I still do this.  You might have noticed that I say a lot of the same things over and over again; that’s because I don’t always know what else to say.  I might feel something different or unique toward your statement, comment, compliment, etc; in fact, I always do; each person brings a unique richness to my life.  I just don’t always have the variety of vocabulary to reflect that.  But know that there’s much more to what I’m feeling vs what I say than I can ever express.  After all, when I’m touched enough, I might break into a big grin or my eyes might tear up, but I can’t exactly express that through my mobile or laptop screen. 🙂

Sometimes, to avoid excessive repetition, I might even consult a thesaurus.  Yes, even in the middle of an online conversation.

Speaking of online conversation, I often prefer to communicate online, rather than in person.  Text, email, social media message, or internet forums, including blog commenting–all are golden.  I can respond at my speed, after I’ve taken the time to compose my message, select my words carefully, proofread my writing, run it through my Social Acceptability filter to ensure its diplomacy, and so on.  Bonus points if there’s an “edit” button, but there isn’t always.

The only drawbacks of online conversation are the slower speed of communication, the lack of vocal tone, and my sometimes-lacking reading comprehension skills.

Some people don’t yet understand that I really do type much like I talk.  It’s also tougher to volley messages back and forth at real-time speed.  But in a way, that’s another plus.  It means that there’s time to process one’s message and compose a reply, and this can all be done at the convenience of both; I have sort of an open-door communication policy, in which we’re free to message each other as our hearts desire, and respond to each other as we have the time, energy, and time zone (sleep/wake cycle) to do so.

Communication, Part 5: Responses:

Sometimes, when receiving news (especially bad news), I/we may not react, which causes non-autistic people to believe that we don’t feel anything, that we’re emotionless.

The truth is that when we do this, we’re/I’m probably overwhelmed with emotion, and I’m trying to bring it up into the more cerebral parts of the brain, where I can attempt to identify them, make some sense of them, and figure out how to express them.  There’s a lag time involved, because I don’t process emotion in quite the same way.

I might have to process the information itself; it may take a few extra seconds for it to “hit home”.  I may be collecting my thoughts, emotions, and quite possibly even myself, as I attempt to formulate a logical response.  I may need extra time and patience to do this.  It probably isn’t that I’m underwhelmed or unresponsive; the truth is more than likely the opposite, and I’m just trying to proceed with caution and get our thoughts and feelings sorted out before I accidentally say or do the wrong thing.  After all, many of us have learned long ago, through often-painful experience, that our initial reactions, if displayed unchecked, could be subject to misinterpretation (again).

I want to make sure that I respond in just the right way, saying just the right things, in just the right tone, with just the right facial expressions.  For me, that involves hunting and pecking through my arsenal of stock phrases.  There’s a significant tax on memory and energy resources, and that creates the lag time.

The same holds true for good or happy news.  Sometimes I might feel like jumping up and down with glee, hand-flapping and squealing in vocal ranges I didn’t even know I was capable of.

But having watched so many people, and noticing that hardly anyone else ever does that, I’ve gotten the message that it’s not exactly “safe” to do that; it’s only “safe” to do what I’ve seen others do and respond well to.  There’s always safety in copy-catting.  And I need to feel safe.

This is often true even when receiving significant news about ourselves, whether the news is positive, negative, or something in between.  The lack of response doesn’t mean I don’t care or that I’m in denial; it just means I’m processing.

Quirks, Part 1: Alone Time:

Based on the people I’ve talked to, plenty of us on the Asperger’s/autism spectrum need puh-lenty of time alone.

It’s not that I’m antisocial.  It’s not that I don’t like people.  It’s not that I’m rejecting you personally.  It’s not even that I don’t want to spend time with you.

It’s just that being around people can often become exhausting for me.  It often doesn’t matter who I’m spending the time with; it’s pretty indiscriminate.  The familiar the person is to me, the better I know them, and the more acceptance I feel from them, the less energy it takes to be around them.

But I still need my time alone and apart sometimes.  I even need time apart from my partner, with whom I’ll celebrate 18 years in a committed relationship in a couple of days, and I’m sure he needs time apart from me.  Despite our mutual comfort with each other, we still crave our own time to do our own thing.  People on the Asperger’s/autism spectrum don’t necessarily have the monopoly on such a need, but I have the feeling that it’s probably more important to us that we get this time to ourselves on a fairly regular basis than it probably is to most people.

I’m not hiding anything.  I’m not doing anything behind anyone’s back.  I’m not shutting anyone out.  I’m not distancing myself. I’m not avoiding you.  I’m not giving you the cold shoulder.  I’m not being mysterious or passive-aggressive. Often, nothing’s wrong.

What am I doing?

Well, I’m recharging my batteries.  I’m rebooting my systems.  I’m clicking on a reset button.  I’m practicing self-care.  I’m re-gathering spoons and steam.  I’m replenishing.  I’m processing.  I’m becoming reacquainted with myself.  I’m sitting contently, alone with our energies, with no outside interference.  I’m enjoying peace and quiet and simplicity. I could be grieving, or resolving a conflict in our heads, or maybe even celebrating, basking in a red-letter moment.

Sometimes I just have to do that.  Sometimes it’s not an option.  Many times, I have to do it often and regularly, in order to be a better partner, friend, family member, worker, etc, to everyone else.  I can strengthen and fortify and reinforce my relationships and refocus our efforts if I allow myself this resting downtime alone.

The general impression of this is that certainly, I must get lonely, right?

The answer is, not usually.  Sometimes yes, if the time alone lasts longer than we want it to, or I’m ready for human contact again before it’s ready for me.  From what I’ve heard, for many of us, making and keeping friends can be tough.  It takes an unusual neurotypical person to relate to Neurodivergent people, to see us for who we are, to meet us where we’re at, and to like or love us as a whole package.

It’s impossible for someone to like or love us while disliking our autism, because autistic people are autistic, and collectively, autism is autistic people.  The general consensus, from what I’ve gathered, is that our autism forms the foundation of who we are, the platform from which everything else springs.

And in turn, we form the foundation of autism, the list of diagnostic criteria being the common ground we share, even if the particular details are variable.  Which, they almost always are.

Quirks, Part 2: I Do Weird Shizz:

If a stranger happens to notice me while I’m out and about, they’ll probably see me staring, either at my mobile screen, at a small fistful of hair, or perhaps into space.

Certain family members (and teachers in school) puzzled over my writing music at inopportune times, such as when they wanted me to be engaged with them.  My behavior wasn’t a slight to them; I was just more interested in what I was doing.  That wasn’t a narcissistic streak; it was simply the raw, honest truth.

I don’t end up on video much, nor have I dared to look, but chances are good that I have an unusual walk.

I either talk too much or too little, and when I do, the conversation usually swings around to unusual topics.

My tastes are unusual.  I like movies that nobody else cared about.  I like music that has never made the radio.  My tastes are fickle, hit-and-miss; I might love one movie or song, but dislike another that might be very similar to the one I like.

I have interests that few other people share.  The intensity of these interests is unusual.  The effect that engaging in them has on me is also unusual; they stimulate and relax me at the same time.  People don’t understand how I can fall asleep while doing my favorite activity.  They’re surprised that it doesn’t keep me awake.  On the contrary, engaging deeply in those activities is one of the only ways in which I can relax enough to sleep.

I collect things.  Not in the “hoarders” fashion, nor the “extreme couponing” mode, nor any other similar concept.  I’m actually quite selective about the types of collections I initiate, and I’m equally choosy about which specific items I’ll add to my collection.

My sleep schedule is odd.  It’s also hit-and-miss, also fickle, and extremely random.  I’m just as likely to go to sleep at 5am as I am to wake up at 2am and be up for the day.  I need maybe three to five hours of sleep, although I prefer the latter to the former.

I’m asexual and non-binary.  I don’t conform to the usual stereotyped expectations of my gender.  I don’t enjoy shopping, getting my nails done, or attempt to align myself with the most current fashion trends.  I allowed my ear piercings (all four of them, two on each side) to close up over ten years ago.  I still kept my earring collection, though.  Because maybe someday…

I have an unusual career, and I have outfitted it in an unusual manner to reach a fuller satisfaction.  For me, a work-related effort is all-or-nothing; I’m either going to do something to the best of my ability and see it all the way through, or I’m not going to do it at all.

Quirks, Part 3: Dichotomy:

I’m full of dichotomies, irony, and yin-yanging.  I can be black-and-white, and I can over-generalize.  I have an internal moral code, and yet I often find myself saying, “live and let live”.

I’m an idealist a cynic.  I over-share and hold within.  I love my loved ones and will rearrange my schedule to spend time with them, and I’ll also (politely) decline invitations and spend much time alone.  I seek certain types of sensory stimulation, while being utterly unable to handle others.

I am too trusting and I also have trust issues.  I can be cranky and judgmental, and yet too-nice and people-pleasing.  I can be flexible and rigid.  I can be too detailed and too vague.  I can be stubborn and refuse to accept something, or I can be too prematurely accepting.  I can be ableist at times, and activitist.

I can be passionate and detached.  I rely on routine and enjoy some variety.  I’ve been known to be spontaneous and agreeable to spur-of-the-moment plans, and I’ve been known to be a stick in the mud that turns them down.  I can have cluttered surroundings, yet a desire for simplicity.

I’m brimming with energy and teetering on the brink of fatigue.  I reach out and I pull away.  I can try to hard, and then I can say screw it; I’m done.

It’s not that I experience Borderline Personality Disorder.  It’s more a product of my INTJ Myers-Briggs type intersected with my Asperger’s/autism, intersected with…me as an individual.

Friendships/Relationships:

I’m incredibly loyal, and I won’t leave your side.  It might feel like I do sometimes, as different projects, obligations, themes, or whatever, pull me in different directions.  I’m the opposite of a fairweather friend; rather than leaving your side when the shit hits your fan, that’s when I’ll appear, if I’ve been absent before.  I’ll be the one checking in on you, offering a listening ear or a rant buddy, or both, whichever you prefer.  I may appear distant, but I’m never very far away.

I’m sensitive, yet resilient.  I’m tough to rattle and offend, while there are certain subjects that Thou Shalt Not Go There.  I find drama pointless and overwhelming, and a complete waste of energy.  You generally won’t find me picking fights with people.  I’m not a troller.  My typical style is to try to find common ground.  My tolerance is usually pretty high, unless someone says something over-the-top.  I try to give them the benefit of the doubt, even if it ends up being to my own detriment to do so.

I generally prefer cats to most people, but don’t take that personally.  I like dogs, too, but cats are a better personality fit.  They do their own thing, and I do mine.  If they’re cuddly, I’ll cuddle back with them.  They’re generally quieter and more predictable; they’re not going to suddenly bob their head into my chin and knock my jaw around.  They tend not to smell like some dogs can.  They’re small and manageable, and they’ll come sit by you.

I would like to develop friendships or strengthen bonds with a few more people.  I wish there was a way to go out and about for a few hours without getting overloaded in a sensory way.  I wish I got along with computers better, such that they functioned well enough, consistently enough, to use Skype more often.  I wish I could proceed without feeling so self-conscious, worried that I’ll overwhelm someone and/or drive them away.

Last But Not Least – I Like To Hug:

I’m selective about who I hug and who hugs me.  But when those people have been identified and vetted, I’m totally cool with hugs.

The world is a strange and mystifying place to me, which probably means that for the world, I’m strange and mystifying to them.  Hey, it’s mutually-assured mystification.  That’s not necessarily a bad thing, so long as the minds of all parties involved remain dilated enough for mutual acceptance. 🙂