Sensory Sensitivities and Atypical Sensory Processing

I used to have a wardrobe full of clothing I could never wear – and this is why.

Musings of an Aspie

This is the first in a series of posts about autistic sensory processing and sensory sensitivities.  Part 2 | Part 3 | Part 4

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I once had a t-shirt that I really wanted to like. It was a souvenir from a trip to Hawaii. The color, the material, the fit, the design–all perfect. It would have been my favorite new shirt, except for one thing.

It had a tiny thread in the collar that scratched my neck. A thread so small that I couldn’t see it. I’d cut out the offending tag and all of the visible stitching holding the tag in place, but that one little thread refused to go.

So I decided that I was going to get used to it. I was going to pretend that evil remnant of plastic thread didn’t exist. If it was too small to see, surely I could ignore it.

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How disingenuous can you get?

So, not only did Autism Speaks quote Kassiane Sibley without her permission, portraying a well-known and vehemently anti-Autism Speaks autistic advocate as if she was a supporter of theirs.

They then claimed to have permission on her blog.

They then claimed they would take it down.

They instead white-texted it.

They finally took it down after being called on it…

… then they changed the URL and quietly put the white-texted version back up sometime last year.

Alyssa of Yes, That Too has a much better run-down of the whole thing here.

Their white texting makes their toolkit – in which they’re still using her words without her permission – come up on the first page of Google when you search her name. For some permutations, it comes up even before Kassiane’s own sites.

I won’t say this is a new low, because that would minimize all of the other vile shit they’ve done in the past few years (like partnering with an organization denounced at the UN for its torture of disabled people, driving their autistic members to resign in protest of their demonization of autism, and using racist dogwhistles to dismiss their critics, among many many many many others). It is, unfortunately, par for the course.

And, believe me, the irony of an organization that paints people like me and Alyssa and Kassiane as “not living” and possessed by demons finding it necessary to steal an autistic person’s work and go to such lengths to keep stealing it is not lost on me.

But this standard-operating-low hurts a friend of mine, and so it makes me angry. Tell Autism Speaks that they need to stop being disingenuous assholes and take that shit down.

“Do you even know what that means?”

I was a kid, visiting some relatives when she asked me. Her voice was sharp and loud, hard on my ears and dangerously low in pitch. In the week I’d stayed here, I’d learned that voice meant anger from my aunt. And she didn’t like me, so she was angry around me a lot.

“Do you even know what that means?”

I was five, I think. I know I was old enough to be in school, but young enough that when people praised me for something, my happy flaps weren’t punished yet. Old enough to know that not making eye contact was dangerous, young enough that I hadn’t yet figured out the forehead trick. I didn’t yet know I was different from the other kids, or that difference paints a target on your back, but I knew most of them didn’t like me.  And I loved books.

I looked at her, my words gone from my suddenly-sore throat. I focused on a hair sticking out of a mole on her chin. It bobbed as her mouth moved.

“Answer me! Do you even know what that word means?!”

I knew she was angry. Didn’t know why. What’s wrong with the word exceptional? It’s a nice word. Grandma had said that you shouldn’t say anything if you couldn’t say something nice, but exceptional was nice. Why was she yelling? I didn’t have time to ponder it. I knew that grown-ups got angry if I took time to figure them out. So I nodded silently that I knew what it meant.

“What does it mean?”

I stared. Opened my mouth to say, really good. What came out instead was, “I-I-Iunno.”

“I-I-I – Talk proper! If you looked it up in the dictionary, what would it say?!”

I shrugged. I didn’t know how to use a dictionary yet. Didn’t know that I should. Dad said it was easier to figure out what words meant by the context, which I thought meant the things around it, but I admitted to myself I only knew context’s meaning by context, and felt a stab of guilt for breaking a rule I didn’t know existed. And I stared at the hair. It started to bob again.

“You shouldn’t use words you don’t understand,” she snapped, her voice rising. I covered my ears with my hands.

I wanted to protest, I did understand. Just didn’t know what it said in the dictionary. Didn’t know I should. One of my hands was pried loose in a grip strong enough to hurt.

“Listen! Don’t ignore me!” My arm shook with enough strength to nearly throw me off the couch. “You might think it makes you look smart to use those big words. But it doesn’t. It makes you look dumb.”

She punctuated the statement by throwing me backwards into the couch cushions.

I didn’t understand. My vision wavered as tears filled my burning eyes. I stammered unintelligibly, trying to get out an apology. A dictionary landed in my lap. I flinched belatedly at the motion of it falling past my face.

“Here. Next time you use a word, make sure you know what it means.”

The floor of the old house shook and creaked as she left the room. With shaking hands, I opened the book. Wiped my eyes.

And began to read.

Walking backwards.

As easily as most people speak, I used to math.

I could math subconsciously. And quickly! So quickly. Faster than a calculator. My parents used to show me off to their friends.

And it felt right in a way that words can’t describe. Just the incredible rightness of getting the answer and knowing it’s right because it feels right and it completes the problem, like I imagine how creative people must feel when they find the last stroke of the brush a new painting needs. 

It was as easy to me as walking is to you.

And then, it stopped.

Because, you see, my way of math was wrong. “You can’t do that in your head!” adults started to tell me. “We need to see your work.”

Never mind that my work couldn’t be worded or written in a way that made sense to them. “It’s right because it’s purple” made the adults scoff and tell me to quit being stupid.

The more understanding ones would say, “I know you know how to do it, and I might not understand how you do it, but I know you can do it. But even though I know you can do it, the principal won’t believe me that you can, so you have to learn how to write it down our way so you can show him how it’s done.”

My idea of getting him to come quiz me was scoffed at. He’s a busy man. And besides, nobody accepts “purple” as a right way to find the answer.

Eventually, I figured out how to emulate their way. I’d start at the answer, and walk sideways to the question. It was slow and time-consuming, but it worked. Eventually, I learned to do my math backward, by emulating the “normal” way of thinking about math. After a while, I did all my math backwards, because it was faster than feeling the rightness of forwards and then stumbling sideways to get the “work” on the paper.

I became so used to walking backwards, I lost the feel for walking forward.

And now I can’t math. Not like I used to. Not by feeling and rightness and color.

Now, I can only walk backwards.

 

Weird health shit

I’m starting to adjust to the school situation, but as my body is wont to do, it decided to hit me with a new health cootie when I’m low on mental energy reserve, so I’ll be quiet a bit longer as I’m learning how to manage my what is probably reactive hypoglycemia.

I kinda have to devote full attention to that because seemingly-random hypoglycemic episodes are not fun and also quite dangerous if you happen to be cutting up veggies at the time one hits (like last night).

My doctor and I are on the case. I’m not thrilled to have to learn how to manage yet another weird medical cootie (seriously, I have enough) but I don’t exactly get a choice in the matter so I have to adjust.

Public service announcement

If you are not disabled, you should go to Twitter and look up the hashtag #abledpeoplesay and then not do any of the things being vented about there.

If you are disabled, go look it up to have camraderie and learn about microaggressive things to other disabilities.

I might have posted way too many of them yesterday as the trend took off shortly after I was chewed out on public transit for treating an asthma flareup. Because won’t somebody please think of the children?! And it’s apparently inappropriate to take inhalers on a bus.

That is all.

Tone it down

One of the best descriptions of tone-policing and why it’s wrong that I’ve seen in a long while. Tell me, could you talk unemotionally about a traumatic event? No? Then why demand it of me?

love explosions

By Beth Ryan

Tone Policing.  Please stop doing that.

What is tone policing?
I’ve created some examples based on what I see people saying.  Often.  Too often.  Tone policing doesn’t just apply to Autism Speaks discussions.  But that’s what’s on my mind lately.

Example 1:
Person A:  Autism Speaks is a horrible organization which promotes the hatred of Autistic people.  Giving your money to them is funding a hate organization.  I am Autistic and you’re financing hatred of me.
Person B: I agree with you but people are just going to dismiss you as cranky and angry if you take that approach.  You need to gently educate people if you want them to listen to you.

Example 2:
Person A:  You shouldn’t support Autism Speaks because only 4% of its budget is used to provide direct services to Autistic people.  Autistic people are excluded from meaningfully participating in the organization…

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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.