Yet more counter-productive antibullying efforts.

So. Yeah. I’m sure those in the autistic community are well aware of this, but an autistic boy recently was humiliated in a very specific and degrading manner by bullies in his community. His parents then decided to compound the humiliation by going to the news and sharing the story – and the video of the incident – internationally.

Neurodivergent K already has a good take on this incident, and I direct you to her blog. The gist of her post is basically this: If you’re trying to counteract bullying, then for the love of all you hold dear in this world, don’t do what the bullies want.

In my post, I’m going to say: if you’re trying to counteract bullying, don’t amplify the bullying. By which I mean: This boy was already humiliated. He was already going to be the subject of gossip at the school for the next approximately until he graduates (judging from my experiences growing up). Then, his parents – assumably with he best intentions in the universe, wanting to raise awareness of bullying – share the video internationally.

Do you thing people in the region (they gave their region, by the way) are not going to talk? Holy flying hell in a handbasket, people. From experience in my school: I was humiliated in a very specific and very embarrassing way by some bullies as a kid. I will not detail the experience, but suffice to say it happened (in more than one way, actually – bullies are terrible people). One time, I made the mistake of telling an adult when they asked about some jokes kids were making. Then an assembly was called at school, and the principle lectured the entire school on how it’s not at all okay to do [very specific thing that happened to me] to another person.

If it was possible to melt into my seat or burst into flames on the spot, I would have. Instead, what had been an isolated incident of bullying where the bullies hadn’t told anyone because they were afraid they would get into trouble became the talk of the school. And my humiliation was compounded.

That’s what those parents did to that boy. Except, instead of it being just the school, they humiliated him in front of their entire community. People will talk. They’ll find out who and how and where and when. That’s what they do. And if his parents think he was dealing with bullying before this happened, it’s got nothing on the number of pranks that will be done to see exactly how gullible and bullyable he is in the coming months. His parents just gave the fucking green light to every single nasty prank anyone in his school thinks of, and they painted a hugeass target right on his back.

And they probably don’t realize it.

But that’s not through this being an impossible-to-anticipate consequence. Even though autistic people are supposedly the ones with empathy deficits, it’s because the parents are displaying an extraordinary lack of empathy for their son.

Parents, think of it this way: Think back to when you were a teenager. Think about something someone else did to you that you found very hurtful and humiliating. Think about that. If it’s not an incident of similar severity to what happened to this kid, amplify the humiliation accordingly. Now, ask yourself, “When I was a teenager, would I have wanted my parents to share this incident internationally?”

I am pretty much certain that the answer to that question is “No. No, no, no, no, no. Not in a million years. No.”

Parents, your kids have thoughts and emotions and feelings, and not just about what their bullies do to them. They also have thoughts and emotions and feelings about what you do to them. Think about how you would have felt as a teenager about your parents doing something to you, then decide whether you want to inflict those feelings on your kid. Think about whether or not you would’ve wanted something shared before you share it. Better yet, ask your kid’s permission before you share something concerning them. And let them have the final say. Because you’re not the one who has to live with the fallout. They are.

Why you should listen to people with disabilities over our parents

A lot of people seem to falsely equate Augmentative and Alternative Communication (ACC) with parents speaking for their kids. I’m going to discuss the difference between the two, why AAC is good, and why parents speaking for their kids is bad, followed by a bit about why “nothing about us without us” is a thing in disability rights.

AAC is an umbrella term for a variety of communication methods that exist to help people who cannot communicate well enough with speech. Stephen Hawking’s computer is a form of AAC. So is sign language. Contrary to some misconceptions, AAC does not delay speech development in kids, and actually might help speed it up.

Some who need AAC are able to independently develop a form of it – consider the various types of “home sign” that Deaf children often develop with their families when they don’t have access to schooling in a formal sign language. On a more personal note, when I was a kid, I took to carrying a notepad and pen for when my stutter became impossible to communicate through, and when I got older, I often would communicate emotional things to my parents via letter or email because I knew if I spoke to them in person, I would be unable to adequately communicate with them about it. Others who need AAC are unable to independently develop their own form of AAC, and are left without the ability to communicate complex thoughts and feelings until someone teaches them one or more formalized AAC method(s). While those learning AAC may require assistance from a parent, paraprofessional, or therapist to communicate, the eventual goal is for the person in question to be able to communicate independently. AAC, thus, exists as a tool to help those with speech and language challenges to express their own thoughts, wants, needs, and desires without interference from others. It exists to enable them to use their own voices. Furthermore, while the AAC user may need help to express their thoughts, the thoughts expressed are theirs, not what someone else thinks their thoughts might be.

By contrast, when parents speak for their kids, that is the parent using hir judgement to guess at what their kid might want. The parent might, if they are very empathic and know their kid quite well and presume competence, get very close to what their kid wants. But they might not. In many cases, even well-meaning parents who try to speak for their children with speech and language challenges presume their children to be incompetent due to ignorance. Even when the parents understand their kids’ wants, needs and thoughts adequately, bystanders, classmates and strangers are unable to attain this same level of understanding, and the disabled person is thus left in an infantilized state of forced dependence on their parents – and that is the best case scenario, when the parents genuinely understand their kid and want to help hir be understood. Worst case scenario, the parents are actually completely misunderstanding what their child is trying to communicate, and leaving their child’s needs and wants unmet. Given that people with normal communication abilities very commonly misjudge each others’ wants and needs, odds are far more likely that, when faced with a person who communicates atypically, an ordinary person will misjudge the atypical communicator’s needs and wants severely.

Furthermore, allowing parents to speak for their children is problematic as it presumes that disabled people are incompetent to do so themselves. Every NT I’ve ever spoken to can remember a time when they were a child and their parents spoke for them in something and got it wrong. They remember the frustration and the embarrassment of others talking over them and the humiliation of being chided for trying to correct someone who was speaking for your wants and getting it wrong. I ask NT people who’ve had that experience: Consider what it would feel like at 16. Or 26. Or 36. Or 76. Consider how upsetting it would be to grow up where those around you spoke for you rather than asking you what you wanted. Where they made assumptions about what you wanted rather than asking, and where your actual thoughts and feelings were doubted to even exist, when they were considered at all.

That’s how people with cognitive and developmental disabilities are treated all the time.

“Nothing about us without us” is a rallying cry of the cognitive and developmental disability communities for a reason. And that reason is this: We are excluded. When you presume to speak for us, you exclude us. We are presumed incompetent. When you assume we need you to communicate for us, you assume us incompetent. We are neglected. When you don’t bother to find out what we actually need, you neglect us.

The truth is that we are competent. Don’t ask our parents to speak for us. Ask us. Don’t push our voices aside and speak for us. We can speak for ourselves.

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.

Accommodations: Not about taking care of people

There is a common and major misunderstanding among currently-able people that accommodations for mental illness, intellectual, and developmental disability are about taking care of the disabled person. This is a wrong-headed attitude to hold.

Why?

You take care of children. You take care of pets. You take care of your garden. You take care of things and people incapable of making decisions for themselves.

By contrast, you help your friend. You help your neighbour clean their driveway. You help a coworker with a project. You help people who have the agency and ability to make decisions for themselves.

Do you get the difference?

Personal living assistance, such as people to help a person with hygiene or making food or doing their taxes or what have you, isn’t about taking care of a person with a mental illness, intellectual disability or developmental disability. It’s about helping them with their living. When done properly, the PWD still have choices. They still have agency. They still have power over their own lives.

I don’t do my own taxes. I can’t. I’ve tried, and I can’t. Rather, I can but it takes a week of working on nothing else and daily meltdowns. Bureaucratic bullshitese and my brain do not get on well. In my current life, I don’t have time to take the two weeks off that getting taxes done and then recovering from taxes would entail. So I get help with it. Does that mean I’m incapable of managing my financial affairs and someone has to take care of me? No. It just means I need help with taxes. The people who help me with taxes understand that I’m a capable person who just needs accommodation in the taxes department.

And that’s the key. Living assistance isn’t having a “carer” – it’s having the necessary accommodations for your diability(ies) so that you can live your life with the greatest level of autonomy and quality possible. It’s not about having someone take care of you. It’s about enabling you to take care of your own life.

How to handle an accessibility fail.

Accessibility fails happen. A lot. Usually not out of malice, but rather out of simple ignorance and societal ableism. You might not know that your perfume makes me cough until my head and ribs ache and then cough some more. Until a few months ago, I didn’t know that certain sounds can trigger epilepsy. Most people don’t realize that a lively debate completely overwhelms my cousin (and me on a bad day) into nonverbal land. And so on, and so forth.

Access needs aren’t always pretty, or simple, or necessarily obvious. Sometimes access needs conflict (like if someone needs their cat as a service animal and I need to share the space – I need cat dander free air, but they need their service animal. How do you resolve it? I’m not really sure… I guess a compromise solution of teleconferencing to either me or the other person would work, perhaps, but I digress). Sometimes access needs are difficult to anticipate (like, for example, if someone is on an extremely rare medical diet). For whatever reason, sometimes access is messy. I get that. I get that, because access is messy sometimes, accessibility fails are pretty much inevitable, even if people have the best of intentions. Which, when I’m not immediately upset about a situation, I do recognize is often (though not always) the case.

So, because accessibility fails happen, it’s a good idea to have a rule of thumb for how to sort them out. Expecting people to be perfect is unreasonable. But I can – and do – expect a good-faith effort to avoid the common accessibility pitfalls and to rectify any accessibility fail brought to an organization’s attention.

I’ve talked about a shitstorm involving an accessibility fail before, I’ve talked about the importance of self-accommodation before, and I’ve talked about how financial barriers to diagnosis can result in being unable to access accommodations to ensure full accessibility. This current post is actually inspired by two situations going on: One is the treatment Neurodivergent K received at Autreat when they had an epilepsy accessibility fail, and the other is the treatment commenter Stella received on Chris Rodda’s blog (original content no longer available, but caches of all comments may be found here. Tl;dr version: blogger posts ableist comic to blog at the expense of Blind people, gets taken to task, shitstorm ensues, during shitstorm, commenter notes that the comic was itself inaccessible to the visually impaired as there was no alt-text, and blogger literally tells her, “screw you!” in so many words).

I might post on how to anticipate accessibility needs later (currently, it’s not what I’m in the mood to write about, so if/when I am in the mood to write about it, I’ll pingback/link appropriately). But right now, I want to talk about what to do, and what not to do, when an accessibility fail arises.

Ideally, you should avoid an accessibility fail before it happens, but if you don’t, the exchange between you and the person bringing it to your attention (who will probably be a person with a disability, considering that most people who know how to spot accessibility fails are the people affected by them), should go something like this:

Person: [content] isn’t accessible to (me / people with [disability]) because [reason]. Can you [provide accommodation]?
You: [apology]. I’ll (do that/ask someone with the know-how to teach me how and provide it) ASAP. I’ll let you know as soon as I have it. *goes and does so*
You: It’s fixed now. Is that better?
Person: (Yes, thanks/No, it needs [modification].)
You: (You’re welcome. / *does modification, repeat lines 3-end until Person says it’s accessible*)

So, that’s what to do. Fairly simple in principle, more difficult in practice because egos and learning curves. In addition, you should keep in mind the following:

  1. The person whose accessibility needs were unsatisfied is justified in being upset over an accessibility fail.
  2. If the person is curt or angry with you, you should still do your best to meet their needs.
  3. This may require you to swallow your pride if an accessibility fail happens on your watch.
  4. Remember that, however frustrated or hurt you are by the person’s anger, they’re dealing with this very often. Some deal with fails of this sort on an every-day, several times a day basis. Imagine if your basic needs weren’t met and were in fact ignored that regularly. Imagine your frustration with that situation. That’s what the person with a disability is currently going through. If their upset seems like an over-reaction to you, that’s only because you’re seeing this fail as an isolated incident, and not as an ongoing and chronic pattern of people ignoring their needs.
  5. A little apology goes a long way. If you make an accessibility fail, the second-best way to make sure the other person knows that you actually do give a darn about their access needs, is to give a sincere and real apology for your failure.
  6. The best way to make sure the person knows that you give a damn about their access needs is to set up a plan so it doesn’t happen again under your watch. If you make policy, structural, or rules changes to your event or organization for a person’s access needs, that shows you actually do give a damn about this accessibility stuff, far far better than any defensive posturing (see #2 on the What Not To Do list below for more on that).

And here is what you should not do, under any circumstances:

  1. Hold accessibility hostage to the person being nice/humble/apologetic enough for you. That’s all kinds of screwed up. You’re allowed to feel hurt if someone get’s angry with you for something you perceive as not your fault. It’s not okay to use that hurt as an excuse to compound your wrong by refusing to right it.
  2. Get defensive. “But I take care of accessibility in situations X, Y and Z!” means nothing to the fact that in this situation, you failed.
  3. Complain about people expecting “special treatment.” Equal access isn’t special treatment, it’s a human right.
  4. Guilt the person over their access needs. That a gluten-free meal might be more expensive doesn’t mean that a person with celiac can magically not get sick if they eat a sandwich on wheat bread. Someone should not be shamed, humiliated, or guilted for having needs.
  5. Take the person’s anger with the situation personally. As stated in #4 of the previous list, they’re not just angry at you, in particular. They’re angry at the fact that society as a whole routinely ignores their needs, and you are just the latest manifestation of the overall pattern.
  6. This one should go without saying, but it’s happened to me a significant number of times so apparently it doesn’t: Don’t curse at, berate, threaten violence or engage in violence against the person whose access needs were violated. The sole exception to this is if they become violent towards you. Self-defense is okay. Physical or emotional abuse intended to put that damn [ableist slur] back in their place is not under any circumstances.

When dealing with accessibility fails for my access needs, I find that the rule is: I complain, person gets defensive, I point out my need, person gets angry and refuses to accommodate, I still can’t access the thing / or if I can, I have to put up with significant and serious negative consequences (shutdown, meltdown, asthma attack, etc) later. In other words, that I can access it doesn’t mean I should or that I’m not putting myself in danger by doing so. Given the many and sundry accounts of similar access fails with similar responses available online through a bit of Googling, and given that the #EverydayAbleism hashtag and account on Twitter are things that exist, I know I’m not the only person this is the rule rather than the exception for.

If you give a shit about accessibility, and if you really believe that stuff about people with disabilities actually being people, you want to strive to be the exception to the rule. You want to strive to be the person who turns a shitty situation into a good experience for the person whose access needs were violated. You want to be head and shoulders above everyone else, not sometimes, not when it’s convenient, but every time. Not because you get cookies or praise or gratitude for it (though you may, they aren’t and shouldn’t be guarantees – see #1 of my what not to do list) but because it’s the right thing to do.

Figuring out my difference

TW: some discussion of self-injury

I remember the day I figured out I was different.

Up until that day, I’d known things happened to me that didn’t seem to happen to other kids. I knew, for example, that the teachers were harder on me than on other kids. I knew that no other kid in my class still had “temper tantrums” at ten. I knew that other kids didn’t get called “retarded” unless they had an aide or had to skip class for extra help. I knew that other kids didn’t have the kind of dangerous rages I did. I knew that other kids didn’t trip over their own feet in gym class, that they didn’t get beaten up or teased as much as me, and I knew that other kids didn’t like me much.

I knew other kids didn’t bite their cheeks bloody to keep from screaming when the room was too loud (I knew that because of the look of mingled alarm and disgust my sister gave me when I mentioned that class was too loud so I bit my cheek and would probably get a canker sore – that look, like the look of mingled mockery and disgust, is one that a bullied kid learns to recognize quickly. That’s a look that tells you to shut up because while that person won’t turn it into ammo, if it gets out, someone else will). I knew other kids didn’t have to clasp their hands so hard their bones creaked to keep from smashing their fists into their head when the sun was too bright. I knew other kids didn’t gnaw on their hands when they were trying to concentrate in a noisy room. I knew other kids didn’t beat themselves bruised in an effort to avoid beating someone else bloody. I knew other kids didn’t burst into tears for things universally derided as “little things” by the adults around them. I knew other kids weren’t “over-sensitive.” I knew that, when trying to resist the tears, other kids didn’t pinch themselves hard enough to break skin or pick their skin bloody or pull their hair out, and by then I knew enough to make sure to ask to go to the bathroom before I did it, lest I end up having other kids make fun of me for it or, worse, have an adult see me and start screaming.

I knew other kids seemed to actually enjoy each others’ company. And that they seemed to make sense to each other. I knew that they didn’t make sense to me. I knew that my parents would call me a liar if I said noise was making my ears hurt or light hurt my eyes or my tags itched. I knew to stitch the hem of shirts I’d pulled the tag out of shut enough that my parents wouldn’t notice that I’d destroyed it – because if they knew I destroyed the hem (with my teeth, since they wouldn’t let me have a seam ripper because I’d wreck my clothes with it…), they’d call me stuff like disgusting and weird and stupid in their frustration. I knew that my sister didn’t mind tags like I did.

I knew that I had to be careful where and when I started to read, because adults wouldn’t believe me when I said that I didn’t hear them. I knew that I was far more picky than my peers about how things must be done (… they must be done right because if they’re not done right, it’s worse than not doing it at all). I knew that adults got annoyed with me and how I could pull an all-nighter without intending to.

But I didn’t add it all together, until one day at recess.

I was hiding in a little hidey-hole under the porch of the school (crouching, to avoid getting mud on my pants, with a book, of course), and something caught my attention as I was about to start reading. At that point, I realized I was the only kid on the playground who was alone. For some reason, that realization was catalyst to a thought process, where I added everything I’d noticed over a decade of life and how I was always called weird and so on… and realized I was different.

I’m not like them. I’m different. They’re right. I’m weird.

It would be two years before I came across the word for that feeling, alienation. Four years before I realized that alienation was actually what I was feeling. Five years before I first came across the word autism, and first considered I was autistic. It would be fifteen years before I claimed the term for myself.

But that day was when I realized what I’d spend the next fifteen years trying to find a name for.

Revisiting labels: Why “labels are harmful” is bullshit

So, I’ve posted before on why “labels are harmful” is harmful. Now I’m going to talk about why it’s bullshit. This is a re-write of a forum post I made once, edited for typos and clarity.

One of my biggest irritations is people who tell me I shouldn’t label myself. “You trap yourself in a sick narrative,” they tell me. “It changes how you think of yourself – you’re not you, you’re a sick person once you label yourself. It’s not helpful.”

To which I say, in a very heartfelt manner: That is fucking ridiculous.

Allow me to explain: People who have problems with labelling seem to have a magical thought process that if the label isn’t there, the illness, disability, or what have you it exists to name will disappear. Don’t label yourself as sick and you won’t be!

This, quite frankly, is bullshit.

When my lung function was pooped out at 40% of my normal at max and I was having >30% peak flow variability in a day, I was really sick. Realizing that it was a relapse of my childhood asthma and applying a label to my illness didn’t make me sick. I was already sick. And not having a label for my sickness didn’t make me magically well. I was, as I said before, really sick. What applying the label did is give myself and medical professionals I was working with a handle on what was wrong. I could (and did) search journals for info about asthma and for info about comorbidities to worry about and possible conflating illnesses to rule out. It also gave us an idea of where to start with medication, and where to go for our plans B, C, D, E, F, etc. It wasn’t all sunshine and daisies after we got the right label applied to my illness (I had trouble with a doctor who didn’t believe that the first-line treatment wasn’t helping, and eventually I had to switch doctors because of it), but it gave us a place to start from.

Likewise, not having a label for my attention issues when I was a kid didn’t mean I didn’t have those problems. It didn’t mean that I magically was a well-behaved student in elementary school, that I wasn’t up till three or four in the morning every night in high school with insomnia, that I could get out the door without forgetting at least one important thing, that I could remember to eat if I was absorbed in something. It didn’t make my handwriting neat enough for me to read it (I still have a hard time reading my own writing unless I make an effort to be neat – and don’t even try my cursive), it didn’t make me coordinated enough to not trip over my own two feet in gym class, it didn’t mean that I didn’t have meltdowns where I’d hit people and break things and not know why, it didn’t mean that I could handle the school cafeteria (I often ate in the bathroom in the winter, or outside in the summer because the cafeteria just was so loud and chaotic and overwhelming even when the bullies who would ruin my lunch for shits and giggles weren’t there that I wouldn’t be able to eat), and so on.

It did mean that I knew I was different from the other kids but didn’t know why because my child psych didn’t feel that labels were helpful.

So instead of knowing I’m different because (reason), I was left with knowing I’m different but having all the adults in my life lie to me and tell me that I’m normal and that there’s no reason why this should be harder for me than it is for most kids so if I found it harder it was because I was lazy, stupid, irresponsible, and just plain unlikeable. Sometimes they said it explicitly, sometimes they just heavily implied it.

Labels do not make people sick. They do not cause people’s problems. They exist to put a name to something that the person likely already knows they have. In that way, they’re helpful, because once you have a name for something, you can unlock all of the knowledge in the world about that thing. But first you need a term for it.

Labels do not change peoples’ identities. A person forms hir identity through hir experiences. I identify as an asthmatic not because I’m labelled like one, but because I fucking well have asthma. And thus I’ve been through the hoops of poorly controlled asthma. I’ve been up at three AM unable to breathe. I’ve been blue in the ER. I’ve dealt with obtuse medical staff who are unable to recognize that cyanosis in asthmatic = breathing troubles even if there’s no wheeze. And so on. I call myself asthmatic because I am asthmatic, not because I’ve been ‘labeled’ asthmatic. Likewise with my attention problems.

By contrast, not labeling causes harm. Let’s conduct a thought exercise:

Imagine that you have a weird glitch that makes an important program for your work non-functional. And there’s no workaround. And everyone around denies that this problem exists. Your computer works fine, what are you talking about? See, this completely different program isn’t glitching at all! If you don’t know how to use that other program, you should just ask and we’ll teach you.

So you ask for training, even though you’re pretty sure you’re doing the same thing as everyone else. The training confirms your suspicions. They give you step by step instructions, except on step 3, your program shuts itself off. On the training computer, it works fine, but when you return to your computer, it shuts off again.

People at work are getting angry with you. Why isn’t your work done? What are you doing with your day? Why can’t you work like Morgan One Desk Over? Hir work is always done on time. Etc.

And you try to explain that your program isn’t working. And they don’t believe you, because when you load the program, it looks just fine. It looks normal.

After a while, you’ll collect disciplinary action. And get a reputation for laziness and being a complainer since you’re always whining about that program that works just fine for everyone else. You just use it as an excuse not to work, others will say disdainfully. You’re too dumb to figure out a simple GUI, others will sneer. There’s nothing wrong with your program, so it must be some problem with you why you’re not getting work done. You have a problem with the boss because you’re too negative and don’t get your work done. There’s nothing wrong with your program. There’s nothing wrong with your program. It looks fine. Nobody else has this problem, so what are you talking about? There’s nothing wrong with your program. You’re being lazy. Just work harder.

That’s what it’s like to have a problem others don’t recognize and not know what it is. Only it’s worse, because it’s not a computer program, it’s your mind or your body that’s got something different.

Then imagine your giddy relief when an IT person is called in to help with the printer and you ask hir to take a peek at your program. The IT person realizes that it was corrupted by a power outage a while back and reinstalls it for you. Xie teaches you how to recognize when the program is corrupted, what to do when it’s corrupted, and how to prevent it from becoming corrupted in the future.

That’s what it’s like to get a diagnosis (label) and a strategy to address your issues.

Why “labels are harmful” is harmful

Trigger warning: Discussion of teacher abuse of a student, meltdowns, and the consequences of growing up with undiagnosed disabilities

Okay, so there is going to be a lot of personal history in this post. I present myself as a case study of why the idea of labels being harmful is both harmful to kids with disabilities and harmful to adults with disabilities. Since, by necessity, I’m discussing me in this post, it’s going to be a lot of anecdata, but I might follow it up with some studies later on to back up what I’m saying because I’ve lost count of the disabled people and disability services professionals who’ve told me analogous stories to mine. I know I’m not an isolated or unusual case here.

I’ve posted elsewhere about why labels are harmful is bullshit, a post I will probably recycle at some point for a post here. Today I want to argue that the labels are harmful bullshit is actually actively harmful.

My family moved around a lot when I was a kid. By the time I was 10, I’d lived in 3 countries, 5 Canadian provinces, and in 8 different cities. One such move came when I was around 6. At my new school, I didn’t make much friends. I was lucky to be placed in a pilot program the school was running of semi-personalized curricula for each student, so I could learn at my own pace in everything. I devoured the coursework and blasted past the grade requirements for some subjects in under a month (math, English, science), while in others (handwriting and phys ed, naturellement), I was below grade level. Still others, I was about on par with my grade peers (History, mostly). I was never bored, was the teacher’s pet, and thrived.

My parents were disturbed by my lack of friends.Since I had access to the school library (books!), I spent my recess and lunch hour reading, and I’d bring two or three books home after school, and return them to the library, finished, the next day. My vocabulary exploded, and other kids started to complain that I talked “like a book.” When offered the chance to go play with other kids, I’d shrug and say, “I want to read.” and then go to my room and read.

My parents took me to a child psychologist. Their previously over-friendly (no concept of boundaries), extremely active (hyperactive) child had suddenly transformed into a bookish, mostly-sedentary recluse. The toy cars she’d previously been obsessed with stayed forgotten in the closet in favor of books that she blasted through almost unbelievably fast. This was a Problem. Given the recent move, they guessed I might be depressed and took me to a child psychologist.

Meanwhile, my teacher had also noticed my lack of interest in other students. He noticed I was cheerful when I got to spend time doing what I liked (books!) and that you could bribe me to tolerate even my most hated subjects so long as there was a book in it for me when I was done. He heard me info-dump to other kids and realized that a lot of my conversation was me repeating lines that I’d read in books, trying and failing at seeming clever by clumsily repeating witticisms that had worked well for characters I liked with no regard to the context they were said in.

My teacher, I’m almost certain, had an autistic kid. He saw the similarities between me and his son and broached the subject with my parents. I wasn’t having too much trouble at school yet – even though I didn’t have any friends and the other kids thought I was a very strange kid indeed, with my books and my stutter and my lack of concern for manners or eye contact – but, he worried, it was only a matter of time before different meant bullied, and he knew that the school could better protect me if I was diagnosed. He told my parents this, while I sorted the books in the back of the classroom by reading level, subject, author (alphabetically) and title (also alphabetically). I imagine they all thought I wasn’t listening. He did not use the words “autism” or “Asperger’s”, but rather “difficulty socializing,” “too attached to routines,” “fidgety,” and “different,” cushioned by “smart,” “enthusiastic,” and “pleasant.” He suggested my parents see a developmental psychologist, who’d helped his son with similar issues.

My parents figured that since I was already seeing a psychologist, they could just ask that psychologist what she thought. Problem: This psychologist did not specialize in developmental disabilities. She told my parents that I was not depressed (correct), that I was introverted (correct), and that they and I would both be made miserable by trying to change my natural disposition (correct). As for the problems socializing and fidgetyness, I was probably shy and nervous, since the only disorders that cause that were Autism and ADHD, and only boys get those. Plus, she told my parents, labels are harmful because they limit the kids they’re placed on. She told my parents I didn’t need special education or extra help, I needed a gifted and talented program (as if the two are mutually exclusive), and that if I wasn’t in one, my boredom would lead me to act out and cause behavior issues at school. She encouraged my parents not to get me “labelled,” saying that it would be a shame to see a bright girl like me limited in such a way.

Things were fine until we moved again. Third grade, new school. This school had no gifted and talented program. I went from doing pre-calculus to arithmetic, and was faced with similarly shocking level changes in all of my subjects. Handwriting was the worst: rather than having a teacher who would accept that I couldn’t write quickly and give me extra time, my new teacher not only refused extra time, but expected me to do cursive. Neatly. I can’t do that at 26, nearly two decades later. It was unreasonable to expect it of me at 8.

I started to have trouble in school. A lot of trouble. Not with the subject material because aside from handwriting and phys ed, I was ahead of grade level in this new school system. I had trouble behaviorally. A lot of trouble behaviorally. Just as the psychologist had predicted, I acted out when I was bored. Since the work was so easy and the teacher refused to let me do anything except sit quietly at my desk when I was done, I was bored a lot. By the end of the first month, I spent more time in the in-school suspension room than in class.

Not that I minded, because my first-grade teacher’s prediction had come true as well: Different now also meant bullied. I did not make a good first impression when I spent my introduction to the class monologing about weather until the teacher had to cut me off and send me to my new seat, and tormenting me quickly became the class past-time. The teacher didn’t like me because of my behavior problems, so she turned a blind eye or punished me for being the victim just to get me out of her hair. I soon knew the secretary on a first-name basis and became her darling.

“I don’t know why she keeps sending you here, sweetheart,” the secretary would say. “You’re a great kid!”

And for her, I was – the in-school suspension room was quiet, free of bullies, and the secretary would let me read as much as I wanted of whatever I wanted once I was done my work (boooks!), so I wasn’t bored. Why wouldn’t I behave?

A conference was called to sort out my behavior issues. The teachers and new principal asked me why I was so bad in class but so good for the secretary and I shrugged and said, “I dunno.” They asked how I felt in class. After a long silence during which I fidgeted a lot, I said to the table in front of me, “Bored.” What bores you was the next question. “All of it.” I replied. There was a lot of back-and forth that I ignored in favor of studying the pattern on the table. I remember my parents arguing for me getting a modified curriculum, the principle debating whether to skip me ahead, and my parents arguing that I was behind enough socially already and that skipping me ahead would only make things worse. In the end, they agreed that I would stay with my age-peers, but I’d be given more difficult work and that I could grab books to read at the back of the room when finished.

Those accommodations never happened. My teacher felt that she could hold my more difficult work hostage to me “behaving” and regarding getting a book, “If I let you, then everyone will want to”. So I kept misbehaving. And getting sent to the in-school suspension room. Other teachers joked that they should water me like one of the plants, I was there so much. I would tell them they shouldn’t water me since I’m not a plant. I didn’t get why they found that funny.

Another conference was called. I told the principal that the work was still too easy and that I wasn’t being allowed to get a book. The teacher lied and said I was. I got punished for being a liar and melted down, throwing a chair at the wall and hitting myself. My parents were shocked at the “tantrum” since I’d never been a difficult child – my mother says I seemed to skip the terrible twos entirely, so long as I had blocks to stack and stuff to sort.

My parents locked me in their car while I melted down and went inside to finish the meeting. They told me later that the principal suggested they take me to a developmental psychologist, since he felt my explosion wasn’t normal and I was definitely having a lot of trouble socially and behaviorally. He said he wasn’t sure it was me willfully being bad, since I was so much better in the in-school suspension room. He said there might be something making the difference between the two environments. My parents refused. “There’s nothing wrong with you that discipline and more difficult work won’t fix.”

This pattern repeated with varying severity all through school, as my handwriting fell further and further behind grade level, and the bullying worsened. I was either the pet or the terror, and it all depended on whether the teacher kept me interested. I got a reputation for being high-strung, unpredictable, wild, undisciplined. Later: untidy, disorganized, scatter-brained, rude, and overbearing were added. I was told often by teachers that as smart as I was, I could be anything, but I probably wouldn’t because I didn’t want to. My third grade teacher was the first, but not the last, teacher to predict that I would never amount to anything in life and would likely be in jail by 20. She was the only one that went so far as to call me worthless and a bitch, or to tell other kids to hit me for misbehaving, though.

I was frequently singled out in gym for humiliation by the teacher since he felt I couldn’t possibly be that bad at [insert skill here]. Except I was.

Sometime around fourth grade, my parents had started giving me “handwriting lessons” where they’d scream at me that it wasn’t hard and that my hand didn’t hurt as I cried and tried to finish the damn sheets neatly enough to satisfy them. I never succeeded. When the pain of my hand got too much, I’d refuse to write anymore and then my parents would physically restrain me and my father would force me to finish the sheet neatly. “There!” they’d say cheerfully when he finished, giving me a hearty smack on the back. “That wasn’t so hard, was it?”

“I hate you,” I’d often reply, and get sent to my room.

That went on for over a year. One day, on summer break, my mother thought some extra practice might be a good idea for me, so my handwriting didn’t atrophy over the summer. I came inside from climbing trees and saw the handwriting set up on the dinner table and immediately melted down. I don’t remember what happened. I do remember that whatever I did, my throat and hands and head were sore afterwards and it convinced my parents their “lessons” were making me miserable, because I never had to do them again, and my parents secured an agreement from the school that I wouldn’t have to do any more “extra practice.”

The school responded by end-running my parents’ refusal to force me to torture myself with handwriting lessons: They started making handwriting quality part of the marking scheme for all of my subjects, and they refused to let me type. My grades in all subjects plummeted. I’d been a straight 95%+ student. I still deserved those marks, but because I physically couldn’t make good enough handwriting, my marks plummeted to low 70s. I spent hours copying over my assignments, often to no avail. When I hit burnout, I wouldn’t do any homework, because a 0 I deserved was less painful than a 72% I didn’t.

(Note that I was, and remain, a perfectionist. A 100% was the only mark I ever felt happy about, and if I got below 95%, I would cry about it. A mark below 75% would induce meltdown. If I made myself not care and refuse to do it, it protected me from the inevitable disappointment of an low mark that I couldn’t help.)

The bullying got worse. I came home crying at least weekly, and I had a lot of bruises on my back and sides from kids hitting me. They made a game of tag out of it: They’d hit me hard enough to bruise, and then go tag their friends. “[my name] germs, no returns!” they’d sign-song. Another time, they refused to call me by name, and instead only referred to me as Beaver – because of my overbite – for two months. And so on. I told my parents, and was told that I should stand up for myself. I stood up for myself in school and got punished by the teachers. I told my parents and was taught that I shouldn’t stand out so much. I tried not standing out, and my clumsy attempts at fitting in were met with derision. I told my parents of my failure, and was told that I should develop a thicker skin. I was over-sensitive. I should just ignore them. I wondered how you could “just ignore” every single interaction with your age-peers, all school day, every school day, for years on end. They told me to stop being defeatist, and that I could fit in if I wanted to, but I must like the attention of standing out.

I began to internalize a lot of bad things. Lazy. Willful. Bratty. Careless. Apathetic Doesn’t want to succeed. Stupid. Freak. Ugly. Thin-skinned. Over-sensitive. Defeatist. Etc. I was receiving the messages on so many fronts – from my parents, from my teachers, from my classmates – that I felt they couldn’t all be wrong. Maybe I really do just not want to work hard enough. Maybe it really is all my fault.

I have spent the time since I left high school trying to erase messages I internalized by the time I was twelve. All because I wasn’t given the right “label” and instead of receiving help for my disabilities, I was written off as a lazy brat. That is how a refusal to give your kid the gift of a correct diagnosis harms them. Because they’ll get labelled anyway – and it will be with words a hell of a lot more painful and a message a hell of a lot more difficult to overcome than simply “different” or “disabled.”

Things, for me, only started turning around when I had a teacher who was willing to look past the endless notes of “does not work up to potential” “is careless in her work” and “behavior problems need work” and actually try to get to the root of the problem. She challenged me where appropriate and accommodated me where necessary. She taught me that I could succeed when I wanted to – I just had to be allowed to type in order to be able to. She arranged typing accommodations and got a label that worked for me, rather than one that worked against me. I wonder how much less pain and how much more progress I could have made in school if more than just my handwriting issues had been addressed. I’ll never know, because my parents refused to even investigate the possibility their kid might have a disability, out of fear of some ominous “label”.

But let me be perfectly clear: Not having any label didn’t stop me from getting labelled, and not having a diagnosis did me far, far more harm than having a diagnosis might have. I don’t know how to convey this to someone who didn’t grow up with absolute knowledge that you would never amount to anything, but the baggage of my childhood is such that every birthday I spend still not in jail and not in a substance abuse induced stupor and not in criminal activity? Is a surprise to me. Because on some level, I still feel like I’m destined for criminality and a bad fate. It’s all my teachers ever expected me to amount to.

And as a result of that? I’m a 26-year-old PhD candidate with two degrees under my belt and a 4.3GPA, and I still don’t feel good enough. And I don’t think I ever will.

Think on that, and then try to tell me that it’s better not to get kids appropriate diagnoses for their disabilities.

 

Lies they told me in school.

This one goes out to the kids who need to hear it, and the adults who lived it. They know who they are.

  1. “In the real world, you sometimes have to do things you don’t want to do.” – Not true unless armed people are involved. In the “real world,” near everything is a cost-benefit analysis, and you might do stuff you don’t like to do because you do like the payoff. This is different from being forced to do stuff you don’t want to do because it’s not worth it to you. That, you don’t have to do, and anyone who tells you otherwise is just trying to bully you into compliance.
  2. “You’ll need to know how to write when you get older.” – True in the sense that you’ll need to know how to fill out forms, etc. Not true in the sense that your teacher is trying to make you believe – that handwriting has to be legible, or that you need the 5-paragraph essay (unless your job requires it). More jobs don’t require legible handwriting and a 5-paragraph essay than do – I get a lot of use out of essay structure, but none out of handwriting. Others I know get some use out of handwriting, but none out of essay structure. No adult I know handwrites 5-paragraph essays ever. Doesn’t mean that jobs that require both don’t exist, but does mean that jobs that require both are a hell of a lot less common than jobs that will let you compensate for stuff that gives you trouble.
  3. “Doing [insert pointless make-work here] will teach you discipline and diligence.” No, doing pointless make-work teaches you compliance. Working hard on something you care about to produce something at a high standard will teach you discipline and diligence.
  4. “You need a thicker skin. In the real world, nobody will protect you from bullies.” In the real world, you’re usually not forced to spend most of your day around bullies. In the real world, you get to choose who you spend time around. In the real world, if people deluge you on a daily basis with insults and threats and just won’t leave you alone, it’s called “harassment” and sometimes “uttering threats” and if it’s bad enough, you can press charges. In the real world, decent friends don’t let others bully you. In the real world, when people beat the crap out of you, it’s called “assault” and you can press charges. In the real world, a gang assaulting a smaller person is not brushed off as “just kids being kids.” In the real world, reasonable people will not expect you to be comfortable with and civil to those who have assaulted you.
  5. “You need to work past it. In the real world, you won’t be given special consideration.” In the real world, you often won’t need “special consideration” because many bosses don’t care how you get the work done as long as it’s done and up to standard so you’re free to self-accommodate as needed. Where that fails, in the real world, disability rights are a thing and you can force the issue. It may not make you friends and you may get backlash, but in the real world, just as in school, you have rights. Teachers who say this are just looking to make excuses for their own laziness.

“What makes you think that?”

So, when I visited extended family earlier this year, I mentioned my autism suspicions to a relative of mine. Her response was a sidelong glance and, “What makes you think that?”

… since everyone to this point has either responded with variations on, “Wait, you mean you’re not diagnosed?!” “I’ve thought so for years. Are you going to get evaluated?” or “Don’t be silly. You’re not autistic – you can [do activity unrelated to autism]!” she took me off-guard. I stammered something about having difficulty with social interactions and sensory issues, and gave a few examples of things from when I was a kid that she remembered, but that got me thinking.

If I want to get evaluated and get whoever examines me to take it seriously, I can’t just say, “About two dozen people I know think I have it,” or “I seem to fit the criteria pretty well,” or what have you. I will have to be able to explain my points and back them up, especially since it’s so difficult to get a diagnosis while female-presenting. So I figured I’d go through the DSM-V criteria and make notes on whether parts apply to me, and if they do, give examples.

A. PERSISTENT DEFICITS IN SOCIAL COMMUNICATION AND SOCIAL INTERACTION ACROSS CONTEXTS, NOT
ACCOUNTED FOR BY GENERAL DEVELOPMENTAL DELAYS, AND MANIFEST BY 3 OF 3 SYMPTOMS:

  • A1. Deficits in social‐emotional reciprocity; ranging from abnormal social approach and failure of normal back
    and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of
    initiation of social interaction.

Difficulty establishing back-and-forth conversations: Until I was 16, I had no idea how to small talk. Now, I follow small talk flow charts I’ve made up mentally for a variety of situations. Sometimes I lose my place in my flow chart (at least 2-3 times a week), and repeat myself. People who know me don’t mind. People who don’t know me get the impression I’m not listening and feel insulted. I would often go several days without speaking as a kid, in part because I was worried others would tease me for my lisp and stutter, but also in part because I just didn’t like making conversation because it was so difficult for me to figure out what to say and when to say it.

Inability to initiate an interaction: When I was younger, I would always wait until a store person noticed me and initiated the interaction because I didn’t know how to disturb them at their work without breaking my “don’t interrupt” rule. Now, at 26, I still have difficulty interrupting others at work, usually spending 2-3 sentences apologizing profusely for – and disproportionately to – the interruption. As well, I can’t do social chit-chat with strangers. At work conferences, I attach myself to someone else who can do the icebreaking for me. I don’t do this because I am shy, but rather because I recognize that I’m very bad at icebreaking and small-talk and I can’t afford a bad impression on industry people at a work conference. Perhaps a better phrasing of the previous sentence would be: I’m socially anxious because I know I’m bad at social interactions, rather than being bad at social interactions because I’m socially anxious. My social incompetence was there looooong before the anxiety, which arose only in response to others’ reactions to my social incompetence. This is illustrated by the fact that in places where I feel comfortable, I actually have more social screw-ups than where I’m nervous because I don’t have my anxiety helping me to stay in the right spot of my flow chart.

Problems with shared attention or sharing of emotions or interests with others: In game sessions, I can annoy the GM by getting distracted reading the rulebook. I monolog. A lot. Even when I don’t mean to. This can often lead to the impression that I think the other person is stupid, since I keep retreating the same ground over and over. It can also lead to the impression that I am domineering, insensitive, or have a one-track mind. As a child, I wouldn’t play with other children if they weren’t doing something I enjoyed. I’d go to a corner and read a book instead – even as old as ten or eleven, long past when most kids will take part in activities they don’t enjoy just because their friends are doing it.

Reduced sharing of interests: I won’t try something I’m not interested in just because you are, even if you’re my bestest best friend in the world. If I’m not interested, I’m not interested.

Affect: My facial expressions are often inappropriate. I smile when I’m nervous, upset or on-edge, which has gotten me backlash (I smile at funerals; enough said). By contrast my concentrating face looks completely overwhelmed to others and my content face looks upset or irritated to others.

  • A2. Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated‐
    verbal and nonverbal communication, through abnormalities in eye contact and body‐language, or deficits in
    understanding and use of nonverbal communication, to total lack of facial expression or gestures.

Hell yes.

Abnormal eye contact: I don’t make eye contact much with those I do like, and pretty much never with strangers or those I don’t like. I look at their forehead, nose, lips, or the air next to their head, instead. People have thought there was someone standing behind them because I can’t do eye contact normally. My parents used to assume me dishonest when I was a kid because I wouldn’t make eye contact. They’d yell, “Look me in the eye and say that!” and I couldn’t because they were angry. I picked up the “look at mouth, nose or forehead” trick around age 12 or so.

Posture: I haz an epic slouch. I’m 5’4.5″ without the slouch, 5’2″ with. I also have a tendency to hold myself stiffly with an odd sort of off-kilter lean that’s made some think I have scoliosis. I don’t, I just stand funny.

Facial expressions: See above re: affect.

Tone of voice: I usually speak too quietly or too loudly. People think I’m angry when I’m just trying to catch their attention, and they think I’m rude when I’m excited and amused when I’m angry. That I often engage in nervous laughter when I realize I’m about to blow up probably has something to do with why people think I’m amused and then are bewildered when I blow up.

Gestures: No idea.

Inability to understand nonverbal cues from others: Yes. Unless it’s very obvious. I miss sarcasm almost always and usually have to have something get hinted at about four different ways before I get subtext. I don’t get nonverbal cues like disapproval or awkwardness – as an adult, I’m usually skilled enough to pick up that they’re being sent my way, but not why. As a kid, I was completely oblivious to them until around 14 or 15.

  • A3. Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with
    caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in
    sharing imaginative play and in making friends to an apparent absence of interest in people

I had no friends from third grade through seventh grade. None. I think that counts. As well, I was unable to maintain a friendship for longer than a year until 14. Most people my age had the same group of friends for several years. I was also bullied severely all the way through school, if that counts.

Lack of interest in other people: Check. I preferred the company of books to people until around age 19. I have the energy to maintain friendships with 4-5 meatspace people, including my partner. I have little contact with my family aside from family gatherings and visits they initiate in part because I’m very much “out of sight, out of mind” when it comes to other people, so I don’t realize, “Oh, hey, it’s been three months since I talked to my parents. Maybe I should call them.” Which sounds horrible, I know. But it’s true. I think it might have something to do with my EF issues.

Also check: I usually prefer solitary recreational activities (my martial arts and role-playing being the two exceptions). I would rather read a book than go drinking. I would rather play video games than go to a concert. I would rather go hiking alone or with my partner than in a large group.

Difficulties sharing imaginative play: Can only do it in stuff like role-playing games as an adult, where there are set rules and a setting that is self-consistent. Likewise, I could do it as a kid, but my “pretend” was very restricted: First, it had to be fandom (I was LARPing before I knew what LARP was) and second, it had to be self-consistent. I had a lot of rules to my pretending, so other kids didn’t often like to play with me. So I would play with my toys instead – they always followed the rules.

Difficulty with age-appropriate social activities: I don’t do bars, I don’t do clubs, I don’t do dancing, and I do but loathe shopping. That was true as a teenager, too. As a teen, while other girls were going to dances and hanging out at the mall, I was drawing up timelines of Tamora Pierce’s fictional universes, writing Star Wars fanfic, memorizing as many books and Star Wars screenplays as I could get my hands on, building model rockets, and doing some circuitry for fun. As a small child, I’d read about meteorology instead of playing on a jungle gym unless someone took my book away – and I’d usually start crying because they stole my book instead of going off to play.

Problems adjusting to different social expectations: Hell yes. I get told I’m being rude a lot. Case in point: I had a brain fart at a hotel on a work trip once – I thought the desk clerk was asking for my ID when she was asking for my key card back so she could activate it because she forgot to (er, yeah, not sure how I made that misunderstanding, either, but I guess that goes toward spoken & nonverbal communication issues, too, since stuff like that happens to me a lot). I said, “Sorry, blonde moment.” My coworker lightly smacked me on the arm and said, “Oh, my gosh, you’re so bad!” I asked later why. “She was blonde, silly!” “Oh, whoops.”

And I don’t even use “blonde moment” in my everyday vernacular. I don’t get why I slipped it in there, unless I was repeating something my sister had said, since she uses that slang a lot.

B. RESTRICTED, REPETITIVE PATTERNS OF BEHAVIOR, INTERESTS, OR ACTIVITIES AS MANIFESTED BY AT LEAST
2 OF 4 SYMPTOMS:

  • B1. Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypies,
    echolalia, repetitive use of objects, or idiosyncratic phrases).

I stim & fidget a lot. A lot a lot a lot. I don’t know if my speech is repetitive, unless I’m going to get coffee, in which case, I might sing-song something like, “Coffee coffee coffee coffee coffee. Coffee coffee. Coffeeeee! Coffee coffee coffee.” If I really need the coffee.

(forgot myself and did that in front of a stranger a few weeks ago. His response, “I think it’s safe to say you like coffee.” Me: “Coffee! Yes, I love coffee! Coffee is awesome!”

Yeah, I can be a bit of a weirdo sometimes.)

Also: My parents and other adults who knew kid-me used to say it was easy to forget how young I was since I talked like an adult, and many have referred to kid-me as a “little professor”. My mother actually used that as a nickname for me for a while. I spoke like that because I mistakenly thought that more technical and precise language would help me to avoid misunderstandings with others. It was a clumsy attempt to compensate for what I was already aware of by the time I was fiveish: That I’m bad at subtext and will often send the wrong message nonverbally. I tried to get more and more precise with my verbal message to compensate for my jumbled and incoherent nonverbal messaging. Problem: I didn’t realize that, say, cephalalgia isn’t in the vocabulary of most other eight-year-olds.

On the stereotyped/repetitive use of objects: I spend game sessions stacking and re-stacking my dice. I tap pencils/pens between my index finger and thumb. I am constantly twirling my keys on their lanyard. People know I’m coming before I enter the room because they can hear the clink-clink of my housekeys on the lanyard as they crash into my hand. Etc.

  • B2. Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance
    to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress
    at small changes).

Define “extreme”. I’ve been known to burst out crying because I had too many changes to my routine in a day, and I explode at my parents over the phone whenever they pull the, “Hey, we’re visiting tomorrow, can you put us up?” thing they’re so fond of doing. Do those count in an adult? When I was a kid, I had about 9 foods I’d eat. I had PB&J with an apple, an orange, and milk every day for lunch at school from kindergarden through grade 11. If something was wrong (like if mom substituted ham – which I hated – for the PB&J because she thought I could use variety), the lunch would stay in my lunch bag uneaten. I started packing my own lunch in sixth grade because I got sick of going hungry because mom was doing it wrong. Does that count?

After reading further into the .pdf I linked above, I would say I’ve grown out of this one to some extent. I do still display the rigid thinking subcomponent of this one  to a degree and difficulty with transitions to a degree, but I don’t know if anything I do under this category as an adult is beyond normal. As a kid, I was a lot stricter with this.

…. unnnless my conversation flow charts count as “ritualized patters of verbal … behavior”. Because I pretty much rely entirely on my conversation flow charts for small talk.

  • B3. Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or
    preoccupation with unusual objects, excessively circumscribed or perseverative interests).

See above about Tamora Pierce stuff and Star Wars when I was a teenager. As a kid, I could look in a meterology textbook and tell you the name of any type of cloud and what it meant weather-wise. Currently, my interests are video games (replaying Mass Effect, just finished playing Shadowrun Returns), tabletop roleplaying games, chemistry and martial arts. Oh, and books. I have over 1500 books. Does that count?

Perseverative interests: I continued with my MSc for two years with no positive results. Pretty sure that counts. Also, martial arts: I’m bad at physical stuff, but I became good at martial arts through a shitload of practice.

  • B4. Hyper‐or hypo‐reactivity to sensory input or unusual interest in sensory aspects of environment; (such as
    apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or
    touching of objects, fascination with lights or spinning objects)

Yes. I’ll walk with my eyes shut if I forget my hat because the sun hurts my eyes. Yes, I have walked into stuff because of this. Yes, I have walked into people because of this. But falling over and rolling my ankle is less uncomfortable than walking with my eyes open with no shade in bright sunlight.

I buy no clothes with tags. If I find a shirt I like, I buy as many as I can afford, and the same is true of pants and underpants (seamless underpants with no elastic band because it bites into my hips and is uncomfortable), and I wear only two types of bras (plain, half-cup bras for work, and Under Armor racerback bras for sports). If I could get away with it, I would wear sports bras always.

I get cold very easily, so I carry or wear sweaters even in the middle of summer because to me long pants and a sweater in the middle of summer is better than risking that a thunderstorm will roll in and I’ll get cold. I hatehatehate cold.

Loud noises and high-pitched noises irritate me to the point that I will cover my ears like a little kid. If the noise is unbearable enough, I might whimper or yell about it.

I love watching coins spin. Rather stereotypical, I know.

C. Symptoms must be present in early childhood (but may not become fully manifest until social
demands exceed limited capacities)

I was little professory by three, and I was getting in trouble for fidgeting by five, and I started getting chastised for being rude and my parents started to notice my lack of interest in other kids by about 6 or so. So I think that’s a check.

D. Symptoms together limit and impair everyday functioning.

They did hugely when I was a kid. I spent more time in in-school suspension than I did in class for most of elementary school. As a teenager, figuring out social stuff became a special interest, and that’s when I drew up my conversation flow charts. As an adult, people don’t mind that much that I fidget, though I’ve been chided to pay more attention when I am paying attention and trying to concentrate. I get told a lot that I’m naive, and my literalness impairs my ability to engage in “office banter” type interactions with my coworkers. I’m okay as long as the conversation stays on stuff I’m interested in. Once it deviates, I’m kind of lost and to be frank, I tend to tune out.

I’ve gotten reprimanded at former jobs for “inappropriate” tone of voice or facial expressions, and I nearly lost a job once because I lost speech and wasn’t able to protest that they’d done the performance review after I’d been working over 12 hours straight with no break or water in the middle of summer and I couldn’t see straight because I was so dehydrated. My supervisor saved my job. That I’ve never taken a social job since that one is, I’m certain, the only reason I haven’t lost a job yet.

There are certain things I can’t do: I can’t do my taxes. The bureaucratic bullshitese drives me up the wall – particularly how nothing about tax forms make sense. I can’t do sales. It’s too draining. I can’t do socialization that’s pretty much expected at conferences unless someone comes with me to act as a sort of social guide. I go to do the speech(es), they go to do the social chit-chat.

So, uh, yeah. All that up there and more I didn’t add in because this post is long enough already is why I’m fairly sure I’m autistic. As my sister put it once, reading the diagnostic criteria with me in mind is kind of like checking off a checklist.