12 (more) things *not* to say or do to someone “with” Asperger’s / autism

(Note: I put “with” in quotes because I know that many of us don’t consider our Asperger’s/autism as something we have, but rather, it’s something we are.  But I phrased it like I did so that people who might not be aware of this can search for the terms they’re familiar with and this post will be more likely to show up; after all, they’re probably the ones for whom this might be the most useful.) 🙂

(Another note: this post is generally intended for neurotypical/allistic people; i.e., those who are not on the spectrum.  And it’s not directed at all allistic/non-spectrum people; it’s intended for 1) those who are “guilty” of the list below, or 2) trying to avoid committing the faux pas listed below.  Of course, Aspie/autistic people may indeed find this information helpful (in a supportive way), too! 🙂 )

I know I’ve written about this topic before (20 Things Not To Say, and 10 Things Not To Do), but it deserves a revisit because, well, I’ve learned more stuff.

1. “Stop that!” (referring to a “stimming” (or self-soothing) activity).

(I’ll preface by saying that I dislike the word “stim”, because it sounds creepy and is rather inaccurate anyway, so I’ll use the word “soothe” or “self-soothe” or something to that effect.  OK, moving on…)  Most Aspie/autistic people have something we do to relieve the unrelenting anxiety that most of us feel fairly frequently.  Where does this anxiety come from?  I have my theories, but I’ll write about them later, coming to a post near you.  For these purposes, suffice it to say that these activities, whatever it/they may be, as long as they’re not harming ourselves or anyone else, are perfectly natural, healthy, and necessary.  The activity may vary; hand-flapping is a stereotypical example, but there are many others, such as twirling or tugging on our hair, shaking our foot or leg, fidgeting, biting our fingernails, chewing on the inside of the mouth or side of the tongue, picking at our lips, playing a handheld videogame or using another electronic device, or making a sound like clicking or a vocal sound (usually under our breath)…you get the idea.  Personally, I check for split ends in my hair, chomp (painlessly) on a certain spot on my tongue, play with my smartphone, or wiggle my foot.  I also scratch a spot on the palm of my right hand, so much so that there’s a callous there.

Most of the time, I/we don’t realize we’re doing it, but we tend to do it when we feel stressed, either consciously or subconsciously.  It’s usually repetitive and may last a while.  If this activity is suppressed or called out on, such as by a parent, teacher, sibling, judgmental friend or coworker, etc, we become even more self-conscious, embarrassed, and ashamed than we already (usually) are, and eventually we’ll resort to something else.  That “something else” is usually less obvious and more socially acceptable, but may be more harmful, such as cutting or smoking.  So if you notice a repetitive activity that you can’t make sense of, just roll with it.  Let it be, and let us be.  If it’s disrupting you, look away; you can ignore us a lot easier than we can ignore everyone else.  Or give us a Rubix cube or something to play with or keep our hands busy.  Some of us may even be open to your asking us (in an open, sincere way) what might be bothering us.

2. “(Asperger’s) It’s just another excuse” / “Are you sure it’s not just another excuse?”

My first question to anyone who asked me that would be, “excuse for what?”  After all, I want to know what they’re referring to.  My anxiety?  My need to have my smartphone with me to escape into in public places?  Playing with my hair?  Unusual work rhythm (I might look lazy, as though I do nothing, for a while, and then work like crazy later)?  My second question might be, “how is it genuinely affecting you?”  Rarely, they do have a legitimate point, so I’d have to consider that.  More commonly, they’re simply passing judgment, either because they’re miserable people in general and they feel incomplete or bored unless they’re picking on/at someone, or they’re uncomfortable because they don’t know how to respond to someone that acts differently from “everyone else” and they don’t know how to approach the situation constructively.  If this is said by a parent or teacher, however, it can be especially hurtful.  Parents and teachers are supposed to be trustworthy role models to whom we look for guidance and support.  They’re supposed to be wise enough to understand that judgment hurts and fails to produce a constructive result.  They’re supposed to be better and more mature than that.  Unfortunately, many aren’t.  If you’re a parent/teacher who works with kids, and you see one who appears to be extra-sensitive or anxious for what appears to be no reason, or bored or “lazy”/underachieving, understand that these are all perceived traits of the same Treasure Chest and that NO, it’s not just an excuse.  You can’t run 60 mph, because you’re not a cheetah.  If I passed judgment on you for that, you’d look at me like I’m crazy and say, “but I’m human!”  Yeah, that’s right.  And we’re Aspie/autistic, and there are things we can and can’t do, either.  We’d appreciate the same understanding.

Aspie/autistic peeps, if this scenario has happened to you, I’m genuinely sorry.  I can also say you’re not alone; this happened to me (several times) as well (a parent and a few teachers during my first few years of school).  It sucks.  If it’s any solace, try to remember that you’re a more grown-up person than they ever will be, especially if they’re the type to heap that kind of criticism on little kids (or older kids).

3. “Go say hi!”

Don’t.  Just don’t.  As little kids, an Aspie/autistic person might appear to be “just shy” and thus, need a little prodding in order to be “properly socialized”.  But you’re measuring our “sociability” by your yardstick, not ours.  In a society that admires, respects, and rewards extroversion, being an introvert to the core is nothing less than a vertical climb.  But that’s who we are.  It should be comforting that we’re not just running up to strangers and talking to just anyone.  A lot of us do want to socialize and connect with others, forming friendships and all that, but we don’t see other people as benign Creatures Like Us; we see them (everyone) as a potential threat.  It’s really tough to “reach out and touch someone” when that “someone” is a potential threat.  Since our already-established family and friends (at least, the supportive ones) are already registered in our minds as non-threatening, we tend to hide behind them and let them do the talking…often, even into–and throughout–adulthood.  We’ll “say hi” when we’re Damn Good and Ready.

4. “Don’t you ever do/wear/etc anything different?”

It’s pretty tough to explain to a non-Aspie/autistic (the formal term for someone not on the spectrum is “allistic”) what the spectrum-brain is like, even in general terms.  It’s complicated.  We process everything very thoroughly, so our processing takes time and appears to be slower.  This includes making decisions.  This means that once we’ve actually made a decision about something (selecting clothing; choosing an activity; deciding to go to a particular place, engage in a particular activity, interact with certain people, etc), it’s a long and complex process.  It involves establishing that whatever decision we’ve made is A) not a threat; B) not assaulting to our senses, which causes over-stimulation, resulting in anxiety and irritability; C) something we can wrap our heads around; D) doesn’t take too much (more) energy (just the act of venturing outside our front door takes enough to begin with, thank-you-very-much); E) something we can work into our routine, etc.  There’s not a lot of this obnoxious, juvenile, drama-filled world that we can actually handle for prolonged periods of time or on a regular basis.  So when we do agree to something, we’re actually quite happy.  It’s also a rare event, so our list of agreeable options might be short.  Thus, when we actually find something we like, we stick with it.  And most of the time, we’re OK with that.  We’ll change or add something new when we’re Damn Good and Ready.

5. “You should really get with the times, you know…”

This often piggybacks on, or is said instead of, #4.  If we’ve found something or someone or someplace that we like, we’re going to stick with it.  Why give it up?  What purpose would it serve to make the change?  I’ve never understood people that changed just for the sake of change.  I change only when either forced to do so, or when making the change would be more beneficial to me than staying with my current option.  I don’t care about what’s current or trendy; I care about what works.  Since my iPhone 5 works fine, I’m not getting an iPhone 6 “just because”.  Like many Aspie/autistic people, I read about and research the new technology (or anything else I’m considering/debating), and decide if it’s worth the effort, time, and money that making the change will take.  If I’m happy enough with what I have, I keep it and forgo the new option, at least for the time being, until I’m (say it with me now) Damn Good and Ready.

6. (Proceed to ignore us or treat us like we’re stupid, or tiptoe around us or our Asperger’s type)

We might process information slowly, we might be slow to accept new things or learn certain types of new information, and we may be shy and hermit-like.  But that does not in any way mean that we’re stupid.  I’m going to be blunt here, so please bear with me: when you’re dealing with an Aspergian, you’re probably dealing with someone who’s got the “average” person beaten by at least 20-30 IQ points.  Do not–and I mean do not–treat us like we’re children (if we’re adults) or somehow mentally challenged.  We’re not.  We’ll also see–and scoff at–what you’re doing.

Don’t tiptoe around us, either.  You don’t need to be afraid of us.  Given the average Aspie intelligence level, some people might initially freak out, because they imagine the worst scenario that might theoretically happen if we used that intelligence against them or to manipulate them.  Chillax; we’re not going to exploit that advantage in any malicious way, nor are we violent people by nature.  (In the rare event that we do, there’s usually going to be a mental illness or other cognitive/emotional abnormality that is not related to Asperger’s/autism itself in any way.)  In fact, we’re predominantly pacifist, straight-forward, and emotionally empathic (we don’t intentionally hurt people because we either know or can imagine what it’s like to be hurt).  So you can trust us much more than most people you know.

7.  (Expect us to do things we can’t or judge us for not being able to do those things, especially after/if we’ve disclosed our Asperger’s/autism to you)

What you see is someone who says they can’t do something that, to you, may appear to be mundane, ordinary, and/or simple.  This may confuse you or perplex you.  You might form the impression that we’re lazy or weak.  Let me be very clear: we’re not either of those things.  In fact, we usually run circles around the rest of the world, even if the “running” takes a more mental form.  We’re also 1% of the population, which means that, since we’re such a tiny minority, the world was not geared for us, and thus, in order to function in it and interact with it, we’ve had to be very strong.

What you don’t see is someone who has tried their entire lives to do the “thing” you’re expecting, wondered in utter confusion-giving-way-to-frustration why we couldn’t, and berating ourselves internally for not being able to “just do it”.  What you don’t know are how many things we’ve rehearsed, planned, analyzed, and imagined, and how many times we’ve done those things, in the bathroom, the shower, alone in the car, or lying awake in bed for hours at night.  Most of you probably haven’t experienced our levels of dread,  shame, self-criticism, and self-abuse.  What you don’t realize is that we’ve tried every option, from every angle, and failed every time, resulting in feelings of embarrassment and hopelessness.  We’ve often given up.

So when we tell you we can’t do something, we’re embarrassed to admit it.  That takes a lot of courage.  So just go with it.  Nod your head with a neutral expression and say, “OK” in a gently-neutral tone and drop the subject.  Or, if the situation feels right, proceed to offer to take over the task for us or help us find someone who can.

8.  (Avoid the subject, refuse to talk about it, bring it up, or discuss it…ever)

This is especially true for parents, and super-especially true for parents or childhood role models of adults who are (officially or self)-diagnosed as Aspergian/autistic.  Most families avoid bringing up subjects they’re embarrassed about or ashamed of–subjects they’d rather bury, forget, or fail to admit to, accept, or acknowledge.  Please, don’t do that to us.  You may not be elated about our spot on the spectrum; I understand that.  You might only be aware of the now-debunked myths about spectrum variants being mental illnesses or parenting failures (they’re not either one of those).  You might feel embarrassed or ashamed for not recognizing it earlier (please don’t–it’s OK; we usually are missed).  Or you might feel embarrassed or ashamed of us (again, don’t–that’s not constructive for anyone, and besides–Asperger’s/autism is nothing to be ashamed of!)  You may harbor prejudice against people with special needs (this is called “ableism“, or discrimination in favor of able-bodied/typically-minded people, and it has to stop.  Come on–it’s 2016, for Christ’s sake).  Or, you may not want to bring it up for fear of offending us (please don’t let this stop you; as long as you’re openly seeking information in a nonjudgmental and supportive way, we’re not going to go ballistic on you.  In fact, we’d rather you talk openly with us than avoid the subject and rely on existing assumptions, stereotypes, and preconceived notions).

9.  (Keep bringing it up (“harping”) on it excessively)

Simply put, we’re going to wonder why it’s such an issue for you.  If you’re asking neutral and nonjudgmental questions, no problem!  If you’re genuine-hearted and open-minded, we’re going to see that and almost always, wholeheartedly support it.  We’re going to fall all over ourselves to reach back out to you, help you understand, and support and appreciate your efforts.  But if it’s more of an “issue”, we may assume your feelings about it–and us–are negative.  We’re going to wonder if it bothers you.  For a while, we’re going to wonder what you’re really thinking.  Eventually, we’ll probably shrug and decide that it’s a waste of time to care what someone else thinks anyway.  But we’re also probably not going to trust you.  And we definitely won’t open up much to you.

10. (Be condescending or critical, then follow up with “….but I’m sure that’s just the ASD/Asperger’s/autism/etc”)

Don’t.  Just don’t.  Most of us can smell passive-aggression/patronization instantly, and we abhor it.  Before judging anyone else in the first place (in general), clean up your own backyard.  Next, you’re dealing with an Aspie/autistic person, who is inherently different from you, in numerous and fundamental ways, so put away the yardsticks, because they’re not useful for measuring us.  We’re not going to “fit” in with the rest of who you know.  So the best strategy is to clear your mind and be open.  Next, read up on Asperger’s/autism, and not just from the “official” information sources, either; watch YouTube videos or read the firsthand writings of real people on the spectrum.  (The link, from AnAutismObserver, will take you directly to a very comprehensive list of blogs, which are each individually linked.) And then follow the various bits of applicable advice given to other items above.

11. (To a self-diagnosed person) “You’re not legit/you’re following a fad, unless you’ve been officially diagnosed.”

Stop right there.  And read this post about the pros and cons of self-diagnosis vs official diagnosis.

12. “Have you heard of Autism $peaks?” / “Can Autism Speaks help?”

I know you mean well.  And I know you don’t know better (or you wouldn’t have mentioned their name!), so I can’t berate you.  But I’m going to berate them.  Hard.  In a separate post. 🙂