How do you know if you experience the world differently?

The title might seem like a weird question, but I think it’s at the core of why so many adult autistics didn’t have a clue how* they were different until adolescence or beyond. Because if you experience something one way all the time, how are you going to know that your way of experiencing something isn’t how others experience it? Their experience is outside of your experience.

If, like me as a kid, you largely eschew fiction because you think the authors are bad at writing people, can’t relate to any of the characters, and don’t see the point in reading this crap (it was in middle school that I first discovered an author who wrote people who weren’t the stereotypical dolls-and-clothes girls in books aimed at girls and first got into fiction) and you eschew television because high pitched noises hurt your ears, laugh tracks scare you and the frequent changes for commercial breaks annoy the crap out of you (I last willingly watched a television show on cable 7 years ago, just so you have some idea of just how much I hate most TV), you’ll have even less chance to realize how you experience things differently, because you’ve accidentally insulated yourself from the experiences of others.

If you hear from all the adults around you that your perceptions aren’t your perceptions, that you must be crazy or a whiner or a wimp or just looking for attention when you complain about things, do you believe them? Or do you believe your experiences? For a long time, I believed the adults. Adults knew more. Therefore they were probably right that I was just a lazy wimp. After all, everyone else said they found it annoying but just toughed it out. Why couldn’t I? It was only when I started to realize that adults were wrong sometimes (regularly!) and that they could be mean and lazy and so on – in other words, when I started to realize that they were just as fallible as me – that I started to question whether I was right when I exclaimed angrily that they didn’t understand as they ever-so-patiently tried to explain to me that my reality didn’t exist and that I should just shut up about my eyes hurting because nobody wanted to listen to that on a day out in the bright sun, and besides,  my eyes didn’t really hurt, anyway.

I’ve seen some parents lament that their kid can’t articulate how they perceive things differently. I suggest that they should consider that maybe their kid doesn’t know how they perceive things differently. If their eyes hurt because it’s too bright and yours don’t, that’s a perception difference. But consider: Your kid has grown up with hir perceptions for all of hir life. That’s hir normal. How can xe recognize that hir normal is different from your normal? It’s obvious to you how you perceive the world, because you experience your perception of the world all the time. Not to hir. Xe can’t take your brain out for a test drive.

I was 17 before I was able to articulate that everyone else seemed to have received the social skills manual but me. I was 22 before I realized that most people who exercise 10+ hours a week don’t have trouble walking up a hill and realized my asthma had relapsed (this despite a slow creep of symptoms for 8 years). I was 25 before I realized that my senses differ from most people. Think about it – I was 25 before I realized that I wasn’t being a wimp when I jumped, yelped and covered my ears at a feedback squeal. 25 before I realized that I react so much more strongly to stuff like that than other people because I perceive it more intensely. And I’m a person who has largely been painfully aware of the fact that I am different from most people since elementary school.

Realizing where your perception differs from others is hard. I can’t unplug my brain and try yours on for size. You can’t try mine on. That means that for me to figure out how you perceive things, I have only nonverbal cues and narratives that I used to discount out-of-hand as too unbelievable to rely on. Autistic people have a notoriously difficult time with nonverbal cues, and if you don’t trust narratives because they don’t feel real to you…

I don’t really know where I’m trying to go with this, except it feels important in a way I’m having a hard time putting in words. My recent and ongoing anxiety issues are making thoughtful analysis and putting my thoughts into the right words** and those words into type far more difficult than I’m used to. I guess that what I’m trying to say is: Don’t assume an autistic person knows how their experience differs from others but is just unable to put it to words. A lot of us have spent a lot of time being told we’re not different so much that we discount our own perception in favor of what others say is true, and additionally, it’s really hard to realize that others don’t see or hear or smell or taste or touch or otherwise feel the world as you do. The block might be coming at a far more fundamental level – the level of simply not realizing that not everyone finds bright sunlight more painful than a sprained ankle or finds a crowded room fear-provoking, or what have you. Maybe words aren’t where the breakdown’s happening. Maybe it’s happening at the not-realizing-it’s-not-a-moral-failing level.

*knowing that you’re different and knowing how you’re different are two very different things – I knew that I was different from other kids by age 10. How took over another decade to really get a handle on, and even now I’m not sure I grasp the full extent of how I’m different from the allistic norm

**Case in point: Those who read the first version of this post, before I made a few edits, may have noticed a lot of homophone substitution happening – “may seem light a weird question…”, “…bad at righting people…”, “… than I’m used too.” etc. I also forgot two critical sentences. If my word retrieval in type is that compromised, you can guess how bad my speech has been for the past almost two weeks. Anxiety makes everything harder.

Hooray, Target’s taking advantage of ignorant and desperate asthmatics!

… sarcasm alert for the title, obviously.

So, it came to my attention a few days ago that Target is selling a homeopathic “oral asthma spray” for asthma. I am incensed. It took me a day or so to calm down enough to write about it.

It is a commonly held misperception that asthma is mild, self-limiting and not something to worry about. I blame shit like the Goonies, where a kid who either has issues in addition to asthma or has dangerously uncontrolled asthma is played for laughs. I blame shit like damn near every 80s buddy cop movie where of course the fat guy was asthmatic because fat people and asthmatic people are just lazy, amirite? I blame shit like damn near every kid’s show that has ever done a special on asthma, where it’s portrayed as “take blue puffer and you’re fine.” Implication being that if you’re not fine, it’s your fault for not taking your meds appropriately. Historically, asthma was held to be more of a psychological disorder than a physical one, and as such, asthmatics get splash damage from mental illness ableism a lot.

Evidence of this public misconception of asthma is all over the place: See all the “willpower!” and “bootstraps!” and similar memes I get bugged with whenever I need to take my inhalers in public ever anywhere.  See the fact that it is not treated as a life-threatening illness by schools, who think it’s a-okay to leave inhalers in school offices or locked in teacher’s desks or anywhere other than with the student who might need it at all times because a severe asthma attack can go from zero to unconscious by the time you run, get the inhaler, and return. If someone is arsed to run and doesn’t just send the kid off alone to pass out in the hallway on the way (that happened to me as a kid. I’m lucky I didn’t die). 

But, as always, public perception is just. plain. wrong. Asthma is a serious illness. It can and does kill. Leaving asthma untreated can lead to a worsening of asthma and a type of permanent lung scarring called airway remodeling, which can cause irreversible airway obstruction.

Unfortunately, I can attest from experience that asthma meds are really fucking expensive. They’re more expensive in the States than they are here in Canada, but they’re still quite expensive here. If I didn’t have health insurance, I would pay more in medication than many people in my city pay in rent. This means that if you’re poor and lack health insurance, it’s hard to treat your asthma and pay for food, shelter, utilities, etc.

Plus, a lot of people just plain aren’t scientifically literate. They don’t know that homeopathy is basically magic water.

So, you have a poor person for whom real medicine puts them in “food, meds, or rent, pick two” territory, or you have a person who’s not quite so poor but is still struggling and is ignorant, and they see this piece of shit, and they go, “Oh, look at that. An asthma treatment I can actually afford! It says it’s not a rescue inhaler, but that might just mean it’s a control puffer like my doctor told me I should take. I know the doc said I should take [actual med], but this is so much cheaper. Know what? I’ll give it a try. What’s the harm?

Or you get someone who buys into “natural living” bullshit and goes to see a homeopath, who tells hir that medicine is unnatural and that they should try this homeopathic thing and doesn’t explicitly say that they should drop their real medicine, because that’s illegal in my country, but instead just heavily implies it.

I am not exaggerating when I say that this could fucking well kill someone. In fact, this sort of bullshit has killed at least one person already (Jackie Alderslade).

Allow me to be perfectly clear: Homeopathy does not work. There is no physical mechanism by which it could work. If it’s diluted properly, it is, in effect, the diluent (often water or sugar). It is a placebo.

Target is selling people magic water for a condition that, left untreated, could kill them. There are no words to describe how vehemently I despise this. I find it abhorrent and vile, dishonest and predatory. It is wrong. It is wrong, it is wrong, it is wrong, and I will scream to everyone I know at the top of my lungs: Do not support a company that sells desperate and vulnerable people stuff that doesn’t work. Do not let enable such quackery with your business. I beg you: write Target and let them know it’s not okay for them to take advantage of ignorant and desperate people this way.

Anxiety and my autism

Writing this because relevant considering what I’ve dubbed my “anxietypocalypse.” (tl;dr: anxious-anxious-anxious-anxious-PANIC-anxious-anxious-anxious repeat = all but one morning of the past week and a bit, as of this writing)

For me, anxiety basically turns the dials on my autistic traits. Lights are too bright (even with sunglasses), sounds are too loud, I notice all of the things (like my housemates are having a conversation downstairs with their door shut that I can make out sound for sound, like my computer fan is louder than normal, like my housemate has a cough, like the neighbour just slammed their door like there’s no wind outside because I can’t hear the breeze like I could when I went to bed like where the belt is touching my skin and where it’s on my pants like the fabric of my pants has pilled in three locations on my right leg and two on my left that I can tell by feel like my back is a bit itchy because winter skin like like like etc), my verbal processing gets worse, my words come slower and with greater difficulty, my ability to filter sounds and sensations decreases,  my meltdown threshold decreases, my anxiety threshold decreases (so I become prone to anxiety feed back loops where I’m anxious because thing is bugging me because I’m anxious because etc), my appetite is either “starving” or “nauseated” or both at the same time (like right now), clothes itch or hurt (even stuff I normally find comfy), etc, etc, etc.

Anxiety makes pretty much everything more difficult: Concentrating, remembering stuff, passing when passing is necessary, etc. It’s also made another post topic come up, one that I’ll post on later, because anxiety won’t let me do it or even allude to what it is right now. But, anyway.

Normally, I’m quite anxious. By which I mean: Unless I’m at home either alone or with my partner while both of us do quiet activities, I am anxious. I’m anxious for the majority of my day, every day of my life. It’s my baseline, something that I’ve gotten used to, and I’m pretty good at dealing with it. Until something makes it worse. Like my current school situation. The uncertainty, tension, and stress associated with the current school situation coupled with the fact that it’s completely out of my hands and the high likelihood that it won’t be resolved for the forseeable future among other things means that I’ve basically hit my “can’t cope” threshold. I can’t. I just… can’t.

I’m operating on borrowed energy and when I run out of energy to borrow and crash, it will be hard. But I need to operate. Because operating is stuff like going to work, doing my research, keeping my job, making food so I don’t starve, remembering to turn off appliances so I don’t burn the place down, remembering to clean up messes for hygiene and food safety reasons. Stuff that if I don’t do it, I FUBAR my life and possibly my plans for the future. So other stuff is being sacrificed: Stuff like homework, extra-curriculars, volunteer work. It pains me to leave unfulfilled things I promised to do, but if I try to do it all right now, I will crash and burn. Probably metaphorically speaking, but given how my proprioception goes out the window in meltdown, the “crash” part might well be literal.

The weekend helped quite a bit, and then yesterday I laid low all evening, which also helped.

But at this point, it’s only a stopgap solution. During the week, I’m still running an energy deficit day-to-day. My aggravated insomnia that reared its head Sunday will only worsen this situation, as will anything that pops up unexpectedly during the weekend to take away from my recharge time. I really hope the situation gets resolved sooner rather than later, but I doubt it will.

Having a hard time

Due to school stuff that is out of my control (I am unable to discuss in full because identifying), I’m ridiculously stressed and anxious lately. It’s pretty much all I can do to keep it together at work, then I come home and spend the vast majority of the evening in silence (maybe asking, “Do you want food?” if I remember I’m supposed to eat), absorbed in a special interest to recharge. My partner is worried about me, I think.

Stress regarding the school situation has made my ordinary social anxiety stuff go haywire. It’s probably going to get worse before it gets better, as the school situation is unlikely to resolve in the near future.

If my posts are sparse, here’s why: I’m too anxious to do much of anything. Anything I consider doing has my brain going, “NO. IT’LL SUCK AND YOU’LL SAY SOMETHING WRONG AND EVERYONE WILL HATE YOU SO YOU CAN’T DO IT.”

I can make it to work. And do work. And then I’m too exhausted to do even online social stuff because that also has my brain doing above. And I spent all fucking day yesterday trying not to run out of the building and home and hide in a blanket fort.

And even when I can get something written, I can’t necessarily work up the nerve to post it. Because see above re: everybody hating me in my brain. Even though I know it’s irrational.

This anxiety is immune to exercise and can only be muffled temporarily, not actually reduced or eliminated, with special interests, so I’ve just been in meltdown-avoidance mode for the past few days. Blanket forts likewise provide temporary muffling, plus they aren’t really that practical during the workday. I will see if I adjust to the school situation next week. If not, I might need to make use of the campus mental health services because I can’t function in meltdown-avoidance mode indefinitely.

Hi… person I don’t recognize but who I assume knows me!

I have a degree of face-blindness. I can’t recognize people out of context. By which I mean: My own mother could walk by me in the mall when I’m not expecting her to be there, and I won’t recognize her. It’s happened.

This can hurt people’s feelings. I’ve discovered over the years that when you don’t recognize someone, they’ll usually think that you’ve forgotten them, and they feel insulted that you think they’re forgettable – especially if you’ve known them for a few months or years. They assume that “not recognized” = “not remembered” and feel upset that they have that little an impact on your life that you don’t remember them.

This is a problem. I’ve tried to correct it by learning how to recognize people out of context better, but that didn’t work – I think mainly because I recognize people more from clothing, hair style, build, and occasionally definingly weird things about their teeth than I do from faces. Out of context means out of typical clothing and hair, usually (since most people don’t wear lab gear while “out and about” so to speak – unless they’re like me and forget to take their lab gear off when they go home on occasion and get to spend the bus ride with a four-foot bubble of personal space in rush hour, but that’s another story), so then I’m stuck with build and teeth, and unless the person has really strange teeth, I’m up a creek. Likewise, if coworkers have massive changes to hair or clothing, I’ll have a hard time recognizing them at a glance.

Sometimes I can recognize people by voice. This is usually those whose voices I hear a lot and who have unusual voices in some way – I can recognize one person because he’s not Canadian and so his accent is distinctive in this region, for example. Someone else I know has the voice of a 3 pack a day 30-year smoker, which is unusual nowadays due to stop-smoking campaigns.

The rest of the time… I have no idea who you are if I’m seeing you out of the context I’m used to seeing you in. Because of this and the fact that I dislike hurting people’s feelings,  I’ve had to master the art of the generic nonanswer, in a similar way that M. Kelter relays in the post Asperger’s Syndrome Versus Alpha Male Syndrome. Conversations tend to go something like this:

Person: Heyyy, how are you?! Long time no see!

Are they talking to me? I think so. Crap. Who is this person?

Me: Hi! Yeah, been a while, hasn’t it?

Person: Yeah! Ohmigod, haven’t heard from you in forever.

Obviously not because you seem to know me.

Me: Yeah, well, you know how it is.

Person: Yeah, I’ve been so busy.

Me: What are you up to lately?

Maybe I’ll get a clue of who they are?

Person: Oh, you know. Work and all. My boss is a total jerk, so I’ve been too busy to be around much. You?

That doesn’t help.

Me: Grad school. PhD.

Resist the urge to monolog – will save successful. Can always monolog later if I want them to go away.

Person: Sounds interesting. Are you planning to become a professor?

Was that approval or disapproval?

Me: I dunno. It’s a tough job market – I’m trying to get engineering certifications so I can switch fields since I’m more likely to get a good job in engineering.

Person: That’s probably a good idea. I’m working at [big box store] right now because I couldn’t find a chemistry job.

So I know you through work or school somehow. That doesn’t narrow it down much.

Me: That sucks.

Person: Well, you know, that’s how it goes sometimes.

Who are you?! Wait – my partner’s here, and he’s probably more lost than I am.

Me: I don’t know if I’ve ever introduced you, but this is [partner’s name], my boyfriend.

Person: Oh, nice to see you again! I think I’ve met you once – I’m [person’s name]. She used to TA me.

Oh! I remember you now!

I spend the rest of the conversation feeling significantly less lost.

Short term v. long term organization

Organization has been something I have trouble with for all my life. My very first school report cards include comments about my organization, and I remember getting chided for losing stuff more than other kids while still in preschool. This is something that surprises and confuses people who know me well.

You see, I’m very good at organizing things.

Except when I’m not. And then I’m a fucking train wreck.

When it comes to putting order to chaos, to systematizing a set of data, to seeing patterns and sorting things into categories, and to similar work, I am very good at organizing. I am the person who other people run filing systems past at work. I am the person that other people go to for designing systems to be easy to find, logical and sensible. I do it in writing, when I formulate arguments for papers and proposals, on my computer with my system of filing scientific papers, and so on. I know how to set things up in a way that makes sense. Even when it’s a job that would drive most others up the wall with tedium, I get a quiet satisfaction out of bringing order to the chaos. I enjoy it.

But when it comes to keeping things neat on a day to day basis, and other organization tasks that require keeping track of small things or remembering to do things that aren’t easily put into a routine, like doctor’s appointments and running unexpected errands, we leave “strength” territory and enter “train wreck” territory. 

Other people can’t understand how I can be so good at organizing things, yet so bad at keeping myself organized. I’m not really sure I understand it myself, except that I’m pretty sure it’s executive function related. But, to make a long story short: the set of skills used to see patterns, and make things conform to those patterns – i.e., those used to make a one-time organizational effort – are completely different to those used to keep track of appointments and clutter and suchlike. People bundle both skill sets under the heading of “organization” and assume it’s the same thing, and then can’t understand why I can be so good at it until I’m a train wreck.

There’s different types of organization. I’m good the system-design type and the follow-routine type, but very bad at the keep stuff neat and keep track of things types. This is why I can beautifully organize all my books alphabetically and by subject… and then over the next few months/years, entropy will take over until the organization is destroyed, until the lack of organization ticks me off again and I re-organize.

And don’t tell me that if I do “a little bit at a time,” it’s easier.

It’s not. If it was easier for me to do it your way, don’t you think that I would?

Person-first vs identity-first.

I haven’t put down in words my opinion on the person-first/identity-first debate, so I will.

For other people: I defer to the person speaking, if they are a person with the disorder/disability in question. I would not presume to challenge a person who prefers to call hirself a “person with visual impairment,” even if I know the broader community tends to prefer identity-first language. If the person is not currently affected by the disorder/disability in question and I happen to know the commonly-preferred option, I will correct their phrasing if the community strongly swings one way or the other – people with diabetes, for example, tend to strongly prefer person-first language, while Deaf people tend to strongly prefer identity-first.

For me: I have a simple way to decide whether to use person-first or identity first on something: Does/did the thing affect who I am as a person enough that removing it from me now or in the past would significantly change who I am? If the answer is yes, I opt for identity first – thus, I identify as asthmatic and autistic. If the answer is no, I opt for person first – thus I’m also a person with allergies, myopia, astigmatism, and a GI disorder.

Note that, for me, opting for identity first doesn’t necessarily mean I’d turn down a cure if offered: I would not turn down an asthma cure. Nor does opting for person first mean I’d take an offered cure: My parents, who are well off, have offered to pay for Lasik surgery if I want, which would cure my vision issues. I have not taken it. All it means is that I think having the disorder has affected who I am.

That’s how I think about it. I’ll respect how you want to identify – please extend me the same courtesy.