12 (more) things TO say and do to people “with” Asperger’s / autism

I wrote about this subject before, too (20 Things TO Say), but that was eons (almost three months) ago.  In the grand scheme of life, I’m still new-ish at this subject, so my discovery process is still unfolding and I’m still heavy into researching what makes us…us.  The etiquette “don’t”s are still much easier (for me) to find than the “do”s, and let’s face it: the majority of the population barely knows we exist, let alone how to interact with (“handle”/”deal with”) us.

Some non-spectrum people might search the internet for “etiquette”, “what not to say”, “what to say” (a valiant effort that we really appreciate!), but when faced with all the lists of “don’t”s in their search results, they might (understandably) start to wonder what is safe to say, and when trying to avoid any of the forbidden phrases, questions, or actions, they might grow more uncomfortable and there might be a cricket-chirping-but-otherwise-dead silence, with nothing to fill the void except a growing sense of discomfort.  This is particularly true for friends, family members, and other people in an Aspie/autistic/spectrum person’s life, and especially in cases of late-diagnosis/discovery, which is the general theme of this list.  So in an additional attempt to build a Bridge of Understanding, here’s some more of our side of the story, a list of twelve more things neurotyipcal/allistic/non-spectrum people can say and do to erase the awkward silence and invisible divide.

(And again, this post is directed toward NT/allistic/non-spectrum (I’ll use the terms interchangeably, for our purposes) people, although Aspie/autistic/spectrum (again, used mostly interchangeably in this context) people may find this useful also! 🙂 )

1. “I’m on your side; I’m not going to leave you.” (Usually in response to our disclosing our spectrumhood to you)

Just reassuring us you’ll stick around and not abandon us can bring immense relief, especially if we’ve “come out” to you, disclosing our membership on the spectrum.  Disclosure is always dicey; it often carries an incredible amount of risk.  There are stereotypes (cue the “Rain Man” comparisons), misconceptions (no, spectrum classifications are not the same as retardation or mental illness), old wives’ tales (nope, spectrumhood is not the result of poor parenting or questionable lifestyle during pregnancy), and there’s the Fear of the Unknown (because spectrum conditions and their nature are still largely unknown to society as a whole; ignore what you may think you know about “awareness”).  We never know how people will react or what they’re going to think.  We have no way of knowing if a so-far-so-good relationship is suddenly going to go south by disclosing our autism/Asperger’s.  We take a deep breath and roll the dice, hoping/praying for the best (or at least, a non-devastating response).  And the kicker is, there’s no “Undo Button”; once the disclosure is made, it can’t be taken back; those moments can’t be erased.  We probably really value you and our relationship with you if we’re taking that kind of risk by telling you.

Just knowing you’re going to hang in there with us and treat us the same way today that you did yesterday (save, maybe, for a few adjustments where needed) is HUGE for us.  As/if you learn more about spectrum “disorders” (put in quotes because that’s highly debatable), it won’t take long before you see that we’re “socially awkward”, “have a few close friends”, and other catch-phrases.  These are mostly true.  And we treasure each one.  So yes, thank you for sticking around, and thank you for supporting us!  And thank you for telling us so; it quells our anxiety (another trait you’re going to see fairly frequently if you explore this further).

2. “I support you”

This can piggyback on the above (“I’m on your side; I support you”), or it can stand alone.  Simple “Awareness” is a lazy concept (I’ll elaborate on that specific statement in a future post); what we really need is your support.  Knowing you’ve got our back, knowing you might be able to step in and help when needed, knowing you can sometimes “cover” for us in a moment of neurological overwhelm, etc, is priceless.

3. “Where/how can I learn more?”

This phrase is music to my ears, and I imagine the same holds true for a lot of my spectrum brothers and sisters.  We’ve tried, unsuccessfully, for years (probably our entire remember-able lives) to interact with the world, except that there has always been an Invisible Divide that we couldn’t surmount, no matter how hard we tried.  We’ve usually felt endlessly misunderstood and hopelessly misinterpreted.  We’ve borne the brunt and the wrath of others when they react to their understanding/interpretation of what we said or did.  It becomes a case of “Nobody ‘Gets’ Us!”, which can be a frustrating and anxiety-inducing way to live.  Many of us simply give up, becoming “homebodies”, “bookworms”, and/or “cat/dog ladies/men” instead.  Our homes, books, and fur-kids don’t perceive hidden messages in what we say and get butthurt in response.  And often, it can seem like the rest of the world doesn’t care.

But thank you for wanting to change that!  Thank you for reaching out to us.  Thank you for stepping outside yourself, stepping outside the “normal” world-as-usual and wanting to understand us better.  This is an immense step, and we’re elated that you want to take it–and that you asked us, rather than some of those “other” organizations (I’ll mention I’ve mentioned names–probably harshly–in a future this post).  We admire and endear people like you.

To answer this question in a useful way, I’ll provide some credible starting points: the best sources are the firsthand accounts, to hear the perspectives of Aspie/autistic people themselves.  This page has a collection of probably a few hundred blogs written by people who are themselves on the spectrum; combing through these may take a while, but it’s worth the effort, and it’s a great page to bookmark and visit as you have time.  The Autism Self-Advocacy Network is another excellent entity.  PsychCentral has a decent description of various symptoms, although I take minor-to-moderate issue with some of their terminology and concepts.  Dr. Temple Grandin, an autistic person herself, gives a captivating and fascinating talk on the Autistic Brain; this video (on YouTube) lasts just over an hour, and serves as an excellent example of our potential.

4. “I believe you” (especially in situations of adult/late-diagnosis/discovery, where our families or others close to us are skeptical)

These three words can go a long way, further than you may realize.  Having failed to be taken seriously for most of our lives, this simple phrase, too, can alleviate a load of anxiety.

5. “Thank you for telling me; thank you for confiding in/trusting me”

Trust is a big topic for us.  (It’s big for everyone in general, but when interacting with people on the Asperger’s/autism spectrum, take that importance and magnify it several times.)  Frequently, we were too “naive”/”gullible” in our early lives; we said and interpreted words and phrases literally, so naturally, we took everything at face value.  Then, somewhere along the line, we were often either made fun of for being gullible, or we were lied to or manipulated.  After that, we grew leery of everyone, having learned the hard way that people don’t always mean what they say, that people aren’t always genuine, their hearts aren’t always in the right place, and that their ethics aren’t always intact.  And if that scenario played out for us, we decided we couldn’t trust what they said, or our own instincts about them.  (Some of us have subsequently developed a sort of “sixth sense” about people, or maybe we learned how to better read body language, or we otherwise became more cautious, waiting until the other person’s behavior pattern and trustworthiness had been more firmly established.)

In short, yeah, we often don’t trust other people very readily or very much.  So if we confided in you, that means we trust you, and that’s big.  Knowing/hearing that you value that effort is even bigger.

6. “If you’re comfortable doing so, can you tell me more about your experience with it?”

This is similar to #3 (“Where/how can I learn more?”), except that you’re asking us personally.  I can’t speak for all Aspie/autistic people (we’re all different, after all!), but if someone (who has either earned my trust or at least shows great promise in doing so during early relationship establishment/development) asks me that question, my soul is probably going to sing.  Not only do you want to know more, and not only are you wanting to ask an “ActuallyAspie”/”ActuallyAutistic” person, but you value my opinion enough to ask me!  And since you’re the one doing the asking, it stands to reason that this also means your ears and heart are open to what I have to say, that you actually want to hear me.  I might not be able to hide my big grin. 🙂

7. (Let us talk.)

This may take a while; we’re often brimming with ideas, thoughts, emotions, theories, information, intuition, creativity, passion, enthusiasm… you get the idea.  The best thing is to understand all of the vividness and energy that’s been bottled up inside, that we’ve been dying to share, but were usually afraid to or felt too self-conscious to do so.  Try to listen, keep up, take it all in, and take as much interest as you can, even if the details are minute and seem unimportant (we don’t always know what’s important to someone else because we think differently; we don’t know what others value.  Also, every detail is important to us, and we want to make sure we’ve been complete and helpful).  Try to be as patient as you can; we’re adults with normal maturity and normal cognition, but there are some qualities about us that are childlike.  Sometimes we seem a bit hypocritical; we may interrupt (out of excitement or urgency, not rudeness), but get extra-irritated when we are interrupted by someone else.  I know, it may be annoying, but please do your best to roll with it.  You’ll probably find it innocently amusing after a while.

This may also take a while in another way; we’ve often felt unheard, judged, criticized, taken advantage of, doubted, etc; as a result, we may have grown dispassionate, depressed, distant, numb, internalized, stoic, and (outwardly) apathetic.  Thus, it may take longer for us to feel comfortable enough to open up.  It may feel like watching a flower bloom.  You can’t pry open the flower to help it bloom; it has to do it slowly and on its own time.  The petals unfurl, one by one, slowly peeling themselves away from the center, and then they spread, freely and on their own, in full glory.  But it was a gradual process that probably feels like watching paint dry.  Here again, try to roll with it, try not to force anything, but instead, provide a gentle and comfortable environment for us to open up on our own.

8. (Gently ask tactful, non-inflammatory, non-judgmental questions)

This can follow up #7 (letting us talk), or stand on its own.  Questions like, “How do you handle… [insert situation here]?”, “What do you mean?” (when you’re not sure how to interpret something we said and you want to avoid the pitfall of reading something into what we said that wasn’t actually there), “Tell me more about…”, “Do you want to talk?”, “How does [situation] affect you?”, “How do you perceive…”, can be good starters.

(Note: this is not the same as asking us “questions” that are actually accusations, criticisms, or inflammatory statements with a question mark tacked onto the end of it, usually because the person doesn’t want to own the responsibility for making the statement.)

9. (Show us you’re listening and comprehending…and most importantly, accepting)

This usually piggybacks on #8 (gently asking tactful, non-judgmental questions) and related advice (#7, letting us talk; #6, asking us to share our experiences; #3, asking where/how to learn more, etc).

10. (Ask us out to a quiet area, like on a walk or low-key lunch, or a picnic in a park; but it’s also good to be willing to just stay in if we’re not up to it)

The world, to us, often seems like a circus dominated–and ruled–by the lowest common denominator, where everything is a sideshow.  Endless stimuli, rudely grabbing our attention.  Compressed, full-audio-spectrum commercials, flashing/strobe LED-lit billboards, excessively-loud music in restaurants (to create that “party, happenin’ atmosphere”!), everything is an assault on our senses.  Drama-queens/kings, attention-seekers, alpha-cavemen, whiny women, screaming children, etc, add to the hellish milieu.  Oh, and everything echoes and reverbs–off of the linoleum or stone floors, the spray-painted cement restaurant ceilings, the polished faux-marble mall walls, etc.  Nothing is calm, nothing is quiet, and nobody is sane.

Enter the Knight (or Knightess?) in Shining Armor, the lone person who says, “do you want to go into the forest (or a remote spot on the beach, or into the desert or mountains, or to a quiet rest area, etc)?”  Relief washes over us.  It’s probably visible.  Finally–someone understands!!  Here’s someone that doesn’t need to go to the top hot, trendy places in town “to be seen” or go on yet another shopping excursion among the mall crowds.  We might not have thought of taking a little road-trip or going on a picnic on our own, or we might not have had the energy to do it by ourselves.  Or it might’ve seemed less fulfilling to do it ourselves.  Having someone by your side that you know is open to a serene and tranquil activity is refreshing and elating.

Sometimes we’ll want to go somewhere quiet, outside our house, whereas others will want to stay in.  Some of us don’t want anyone in our house, ever (which is nothing against you personally!); others of us don’t mind having close/trusted company in our house (usually one or two at a time, and usually only for a little while), whereas others of us are perfectly fine with having a close friend/family member in our living space for longer periods of time.  Our individual preferences are scattered all over the map (and sometimes our preferences may change from day to day, or even more frequently).

11. “I like/love you just the way you are.”

I can’t express how important and exciting this is to hear.  Someone so accepting and embracing is also a rare treasure for us to find.  Sometimes it’s like mining for gold.  Imagine how you’d feel if you were mining and mining and finally struck a good gold nugget.  Well, that’s how this statement sounds to us; it gives us that same feeling.

12. (When we’ve mentioned, described, or explained an Asperger’s/autism spectrum trait: ) “I’ve always loved that about you”

This, too, is incredibly comforting and encouraging to hear.  It shows that you’ve been paying attention.  It shows that you think and feel on a higher and deeper level, valuing that which is uncommon, complex, and unique.  It shows that you care.  It tells us that you responded positively to something about us (which is often uncommon for us to experience).  It also shows you feel strongly enough about it to say something to us.  That rocks 🙂