20 things not to say to Aspies/autistics (or people with Asperger’s/autism): My edition

Heads up: This post got a bit long. 🙂

Because I haven’t known about my Asperger’s neuro-type for very long, I haven’t encountered a lot of the pet-peeve phrases that Apies have endured for years.  This also means I’m not an expert on this topic at all.  But that also might mean I might bring a different perspective.

Nonetheless, I’ve come across many Aspie-etiquette posts about what to say and what not to say, and I have to admit, I agree with a lot of the advice.  I also have a few list-items of my own to add.  These are just my opinions, and they may not hold true for all Aspies.

This is the first of two posts.  For now, I’ll start out with 20 things not to say:

1. “Try Harder”
Lord knows are are trying.  We try every day.  We try to decide what to wear every day.  We try to muster the courage to leave the house.  If we have a job and that job includes meeting or interacting with people, we muster the courage to do that.  If we’re in school, we try to pay attention, which is only easy if it’s a subject we like and it’s being taught well.  If we drive, we try hard to make it through traffic without having a nervous breakdown, a meltdown, or causing injury to someone.  We try to remember to do everything.  We try not to trip over or run into anything.  We try not to drop things or spill things.  We try to figure out what we want to eat.  These may be simple, effortless thoughts for a “normal” person, but they can be significantly more complicated for an Aspie, for many various reasons.  We’re not stupid, we’re not lazy, and we don’t purposefully underachieve.

2. “Why can’t you (just)…?”
The answer is simple: because I can’t.  That’s all there is to it.  What seems simple to 99% of the population is often more complicated for a lot of us.  It’s not because we make it complicated; it just is. For example, when I arrive at the office on Monday, “put out the fires” (i.e., resolve any emergencies that arose), and I can finally settle into my solitude and focus on my work, and a staff member comes to me with a non-emergency that he or she is treating as though it were an emergency, I freak out a little bit.  What this looks like: Staff member: “So-and-so has a question about…” Me (frazzled): “I can’t handle that right now.  It’ll have to wait until tomorrow.”  Sure, it may be a simple situation and the solution to the problem probably doesn’t involve rocket science, but I’ve reached my limit, and once that has happened, that’s it.  I can’t do any more.

3. “You’ll just have to learn to…” (sort of a piggy-back on the previous “Why can’t you…?” comment)
This can either follow the neurotypical’s exasperated “why can’t you…” remark (if you’ve chosen to respond to that remark and they don’t like your answer), or it can be a substitute for it. For example, when I’m engaged in Activity A, which might involve deep, focused concentration, and someone breaks that concentration and starts talking about something completely different, I freak out a little bit then, too.  Before I realized I was an Aspie, I used to call this “having a tough time ‘switching modes'” (i.e. from Work Mode to Home/Relaxation Mode). It might take an allistic (non-autistic) a matter of a few seconds to a couple minutes to detach from their previous activity and fully engage in a different activity.  For the allistic, no prob, not a second thought.

By contrast, it takes me 15-20 minutes (on a good day) to do “switch modes”.  Someone once had the gall to tell me I’ll “just have to learn to do that faster”.  I wanted to tell that person they would “just have to learn to grow a third leg.”  I was incredibly frustrated, because I knew I had a “tough time switching modes” (in fact, this was a deep sore spot for me), but had no clue why.  I figured it was some kind of cognitive defect.  I had already tried everything I could think of to overcome this, and had failed.  I knew that my gradual transitions between modes slowed me down at work.  I felt even more self-conscious, if that was even possible.  So yeah, allistics, if you’d refrain from telling us we’ll “just have to learn to” do the impossible, that would be great…

4. “Hurry up”
Yes, I understand that we need to get going.  I know we have to be somewhere by a certain time.  I know that that time is quickly approaching.  No argument there.  But I might have been engaged in a Special Interest activity or some other task that requires intense cognition, and I can’t just pull out of it right away.  I need to find a Stopping Point.  This may take time.  It may take 30 seconds.  It might take 15 minutes.  It has taken as long as an hour or two (usually at the end of the day, when we don’t necessarily have somewhere to be by a certain time, and the activity I was engaged in turned out to be more complicated than I could’ve foreseen).  Sometimes even I don’t know how long it’ll take.  I realize that’s frustrating.  It doesn’t exactly make my life any less stressful, either. But it’s a limitation that I have.  I’ve learned to deal with it, and so can others.  On the other hand, I realize that I also must be conscious of time and the needs of others, and I can likely work on finding that Stopping Point a little faster.  But nagging with a short, abrupt tone of voice isn’t going to help or solve anything.  Like many Aspies, I have to do this on my own terms.

5. (Upon a newly-discovered diagnosis/assessment/evaluation): “It’s just a label; don’t let it become you”
I know that people who say this mean well.  For reasons I might discuss in the future, I’m all-too-familiar with the fact that some people have a tendency identify too strongly with their diseases/disorders, handicaps, or anything else that makes them different from others.  This happens for several reasons.  One is that we want to fit in, and thus an individual usually wants to minimize any difference between him/herself and the general population, and the presence of such a difference is magnified and painfully obvious to the bearer.  This difference or abnormality can become all-consuming.

I’m also all-too-aware of another reason people become overtaken by their various differences, which involves various attention-seeking behavior patterns that emerge in some people who have a chronic issue.

In either instance, some of these folks almost “get married” to their abnormality.  They Google a lot (although, who doesn’t?)  But it doesn’t stop there.  They join support groups (which can be fine, depending on how the individual approaches that activity).  But it doesn’t stop there; it can slowly begin to permeate their identity. A lady with fibromyalgia may call herself a “Fibro Chick”, people with Lyme Disease may call themselves “Lymies”, and so on.  Over time, their sickness-identity can start to get in the way of their healing and recovery.

In these cases, the “it’s just a label; don’t let it consume you” is actually good advice.  But Asperger’s and autism aren’t like that.  Why not?  The answer is, because Asperger’s/autism are (in my opinion) directly responsible for who we are (at the very least, to a large degree).  It DOES consume us, because it’s what and who we ARE.  We cannot complete a conscious thought, process a sensory stimulus, absorb a piece of information, utter a single word, or make a single decision about our tastes, preferences, activities, or daily lives, without filtering them through an autistic/Aspie filter.  Diabetes doesn’t make a person who they are; autism does.

I think what someone who makes the “don’t let the label consume you” comment really means is, “don’t let it limit you.”  Now, that, I can agree with.

6. (Upon finding out you’re an Aspie/autistic) “I’m sorry to hear that”
Don’t be.  I’m not.  It’s not a Greek tragedy.  It’s not a loss.  I don’t view it as a disease, or even a disorder.  I’m not broken, defective, or less of a person.  I appreciate concern, but Aspies generally don’t need sympathy.  (We do need and appreciate understanding.)

7. “Can you get treated for that?”
No.  Since it’s not a disease, there’s no treatment.  Implying that I need treatment for Asperger’s/autism could be perceived as a thinly-veiled implication that I’m somehow sick or defective, or that Asperger’s/autism is wrong and “needs fixing”.  It doesn’t.  There are plenty of stressful effects of being on the spectrum, such as anxiety, fatigue, or irritability.  Those symptoms can be handled in an Aspie like they could in anyone else.  What do I do for Asperger’s/autism?  My answer to those people is: “just be. There’s nothing to do.”

8. (When I trip over something) “There’s a door/chair/other object there…”
I realize that’s meant to be funny.  Hell, I’ve said it to others myself.  But before saying something like that, please take a moment to think.  If it’s the middle of the day and I’m relatively relaxed, you’re probably safe.  But if it’s the beginning of the day (especially if I’m experiencing some anxiety about the upcoming day) or it’s at the end of the day (when I’m exhausted, drained, and probably a little brain-fried), it could actually hurt.  It’s a reminder that I’m clumsy and that it’s noticeable enough to make a comment.  I’m already pretty self-conscious of my clumsiness, which is fairly frequent and moderately severe.  When I’m clumsy, I also usually tend to make sudden unexpected noise or a mess that I now have to clean up (which takes time, which means that I can’t engage in a Special Interest for a few more minutes).  Being clumsy will get its own post, I promise; there’s a lot that I have to say on that subject.  All I can say is: please exercise caution.  Pay attention and gauge whether or not that would be received as funny, or as hurtful.

9. “Let’s go to…[busy place]” (in rush hour traffic)
Driving is one of my absolute least favorite activities.  It triggers all kinds of responses, including frustration, anger, fear, and exhaustion.  The magnitude of the trigger depends largely on–and is directly associated with–the density of the traffic.  Obviously, going to Costco on a Friday afternoon at 5pm is not going to end well.

10. “You should wear makeup/dressy clothes/cuter shoes/etc”
Again, the intentions are probably good.  I wear old (but clean) jeans that I’ve had for 15 years.  My shoes may have scuffs on them or broken laces or may otherwise be somewhat dilapidated.  My hair might be in the same loose, low ponytail that it was yesterday.  I’m not exactly a sucker for trends, either; I have plenty of tie-dye T-shirts from the 1990s.

This is pretty concrete evidence that I don’t exactly want to change.  If what I’m wearing covers me sufficiently, feels good on my skin, allows me full range of movement, and looks halfway decent, I’m not going to give it away and replace it with a collection of camis, cardigans, khakis, leggings, and “cute shoes”.  I’m not a fan of polyester, spandex, “skinny jeans”, “low-rise”, “hip-huggers”, pointy-toes, high heels, the “layered look” or anything else.  Makeup works the same way; I can’t stand the oily, powdery feeling on my face.  I don’t look like myself if I’m wearing war-paint.  I might be 38, but I outgrew my acne 14 years ago, and if I have a couple of wrinkles (usually two vertical ones between my eyes), then I don’t see anything wrong with that.  It’s not like I look like the Walking Dead.

11. “Calm down” (in the middle of a meltdown)
Way wrong answer.  It usually doesn’t work, even if I want it to.  I would love to calm down.  But when I’m melting down, that’s it.  It’s like a nuclear meltdown, where you just have to wait until it stops eating and see how deep the hole goes.  It has to run its course and no one, not even I, can stop it prematurely.

12. “Grow up”
Luckily, I haven’t heard this phrase in quite a while.  Simply hearing it might actually trigger an outwardly-explosive meltdown.

13. “Apply yourself”
I heard this in school all the bloody time, usually from teachers writing notes in the Comments Section of the report card.  “A pleasure to have in class, but needs to apply herself” is usually what it said.  Um, I am.  Seriously, I tried, and try as I might, some subjects just didn’t “click” with me; I usually couldn’t help drifting off into some dreamland during those classes.  I wanted to pass, and I knew I would get a talking-to if I didn’t.  Nobody wants a Lecture From Dad about school.  I knew that the quickest way to earn a spot at the table before dinner, getting such a Lecture From Dad, was to do poorly in school.  Thus, I wanted to do better.  Nobody understood that I couldn’t.

14. “Smile”
I usually got this while walking around or when I was cocktail waitressing in years past; some bar customer would jolt me out of deep concentration in the process of saying that.  The truth is, I wasn’t unhappy; I was in deep thought or very relaxed (or both).  When you’re in deep thought, all of your brain power gets devoted to that thought-stream, and there’s little left over for controlling the muscles on your face.  Same with being relaxed; when you’re truly relaxed, all muscles relax, including the facial muscles it takes to smile.

15. “You should get out more often”
To me, this is akin to saying “you should try to pierce your skin with a butter knife more often”.  I do like going out, at times.  But there are a few prerequisites to doing so.  First, there’s a plan, and the plan does not seem insurmountable.  Second, we know who we’re meeting with, and that there won’t be any other people joining us whom we don’t know, unless this is planned and agreed to beforehand.  Third, it’s not during times of heavy traffic, or if it is, we’re not under a time-crunch.  Fourth, the venue to which we’re going isn’t going to be too loud or overwhelming.  Fifth, I have to know about it in advance.  Sometimes I only need an hour or two; other times I need a couple days or weeks.  And last but probably the most important, I have some social reserves left, meaning that I’m not socially fatigued/exhausted (or fatigued/exhausted in some other way).

16. “Look at me”
No problem, as long as you’re the one talking, but only for a while.  Staring into peoples’ eyes when I’m talking breaks my concentration and I’m much more likely to get flustered and lose my train of thought.  Staring into someone else’s eyes is weird for me, but tolerable if I can look away every so often without them taking offense as though I’m tuning them out or turning off.  I’m not; I’m still listening.

17. (In an overwhelming situation of which I’m dying to escape) “No, you need to stay here”
Luckily, this doesn’t happen very often to me at all.  If it did, there might be warrants out for my arrest (kidding…kind of).

18. “Can you do something for me?” or “I have a question…” (when I’m obviously drained or exhausted, or otherwise switched over into Relaxation Mode)
This is probably one of the Things Not To Say that I dread the most.  Chances are, I’ve had a pretty full day.  I work with several other people, and I’ve probably met with several others, all of which causes at least some anxiety.  I’ve also probably made literally hundreds of decisions and maybe even gone to war inside myself over several dilemmas.  I’m almost assuredly socially exhausted, probably hypoglycemic (low blood sugar), dying to engage in a stress-relief outlet or Special Interest activity, and I’m probably brain-fried and on my most taxing days, I may even be mute.  My brain doesn’t work.  I probably can’t even form simple sentences, let alone activate my higher-reasoning and decision-making centers enough to answer a question or carry out a request.  Hell, answering questions or fulfilling requests might be tough for me on a good day.  Please, please don’t pummel me with questions or ask me to do things at the end of a workday.  Bonus reason why not to do this: I’m probably not going to even remember the conversation the next day.

19. “Everyone feels like that sometimes”
Argh.  Yes, I know that the vast majority of humans experience the range of human emotion.  I know that everyone has moments where they feel confused, tired, dreamy, preoccupied, overwhelmed, interested in something specific, anxious, irritated, awkward, embarrassed, frustrated, angry, at-their-wits’-end, and more.  I get it.  I know that Aspies don’t have a monopoly on these emotions.  However, I think it’s important to remember that these emotions are mostly transient and temporary for allistics (non-autistics/Aspies), much more so than they are for us.  In fact, for a lot of Aspies, anxiety, confusion, frustration, and being overwhelmed (just to name a few) are sort of a way of life.  Hyper-focused interest, anxiety, irritability, embarrassment, etc are such common feelings for many on the autism spectrum that we may be experiencing them and not even realize it.  Sometimes these emotions come prominently to the forefront, while at other times they fade into the background, but they never really go away.  They’re always there.  Allistics don’t know what autism is like, and vice versa; would we ever dream of saying to an allistic, “why are you always staring at me when we talk??” or “you claim to like a subject but you don’t seem to know much about it; God, you’re lazy!” ?  Of course not.  Yet at times, some allistics feel a need to minimize or marginalize our experience as somehow less valid than theirs.

20. “Have you tried…[x]”
My answer to that question is either yes or no.  Yes, I’ve tried [x], and it doesn’t work for me, or It Doesn’t Work That Way, period.  Or, no, I haven’t tried [x] because I’m not interested/It Doesn’t Work That Way/etc.  Besides…what am I trying [x] for?  To “cure” my neuro-type?  (It Doesn’t Work That Way.)  To make life easier for allistics?  (I’m all for making everyone’s life easier, but let’s face it: allistics, generally speaking, already have it easier, simply due to their strength in numbers.

Usually, allistics do mean well when they say this.  They operate from frame of reference given to them by popular culture and the media, having a limited awareness of autism/Asperger’s, in which they’re vaguely familiar with the better-known stereotypes and little more.  I get it.  I was one of those people, too.  I thought, “wow, wouldn’t it be great if we could cure this epidemic of Autism!”  Yep, things change.  Because now, I’m well aware that this is a neurological variant (AKA my use of the word “neuro-type”), and not a disease.  Whether or not it’s a disability is up for debate, depends largely on who you ask, may vary from day to day for an Aspie, and will probably be the subject of its own post or two.  For me, it feels like a disability sometimes, and at other times, it’s an amusing, distinctive, entertaining quirk.  Thus, I don’t feel a need to “try” anything to “fix” my Asperger’s/autism.

______________________

Please note that I’m not trying to divide allistics and Aspies/autistics.  I’m simply calling some allistics out (at least, the ones who would say these types of things) for their own lack of understanding.  Neither the allistic nor the Aspie/autistic can really know what it’s like to be the other type, so “mind-blindness” occurs on both sides.  We (Aspies) already know what not to say to allistics; we pick up on the “Do”s and “Don’t”s very early on, as we’re being taught the social norms and rules of etiquette of general society.  We’re surrounded by the neuro-typical world, so we’re already well aware of how it works.  But few allistics make the same considerations for Aspies/autistics, so I thought I’d help bolster that. 🙂

Advertisements

9 Comments

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s