This is Autism, Flash Blog

I wrote this back in 2013, and it’s worth repeating, so here it is.

Here’s the thing about my autism, okay? It’s my autism. It is not your kid’s autism, or your brother’s autism, or your nerdy friend’s autism, or your patient’s autism. It is my autism and no one else’s. It doesn’t belong to anyone but me. So I’m the only one who gets to decide whether it speaks or stays silent in a given situation.

And I am sick of organizations appropriating my autism to scare parents and politicians into supporting dubious “treatments” that don’t work instead of making sure that I have the supports I need to do my work, and making sure that other autistics have the supports they need to dotheir work, whatever that work might be.

I don’t think in pictures. I speak in whole (and complex) sentences. I have managed to reduce my rocking and flapping to times when I’m alone or with others who understand and don’t judge me. I don’t think I make any more gaffes or slipups in conversations than most NTs make, these days. But it is still my autism. Mine. And the way it affects me has changed over the years.

When I was a kid in the 1970s, being autistic caused me so many problems that were attributed to my high IQ and my “giftedness.” With no explanation for why people thought I was weird, and no way to fix any of it, I did a lot of self-harm. I hated myself, because no matter what I did, I was in someone’s way or getting on someone’s nerves. I was literal-minded to the point that a joke book on “how to make yourself miserable” (Google it or look it up on Amazon) seemed like actual instructions for how to live, not humor. I had trouble understanding small talk or why anyone would care about the weather or sports when they could be discussing the important things (like the books I was reading to pieces, or the music I wanted to play over and over and over and over again on the piano, or the important thing I learned in history class). I had no feel for depth or nuance. I couldn’t understand how interaction worked – too much of the important information was being communicated on channels that I had no receivers for (tone, body language, facial expression, and indirect/metaphoric language). I spent a lot of time frustrated and confused because my logical, literal brain couldn’t navigate our illogical, metaphoric world.

The social ineptness, literal-mindedness, and unrealistic expectations continued into my twenties. I dropped out of college after graduating from high school with a D average (so much for being “gifted”), drifted from dead-end job to dead-end job, annoyed my co-workers and bosses, and got fired repeatedly. I got married thinking it would fix me; it didn’t. After two kids and a nervous breakdown, my marriage fell apart, and I found myself at 29 with no prospects and no income beyond a very small disability stipend.

My thirties were spent going to school because at first I didn’t know what else to do. In that first year of school I got lucky – an official diagnosis of high-functioning autism, and for a while I used that as a shield. But I didn’t want people to hate me, so I also studied how it actually works, this whole interacting-with-other-human-beings stuff. And after twelve or thirteen years of intense study of human interaction, I get some of it. I have a Ph.D. now, and it’s in a subject that helps me understand and get at least some of this stuff that I never understood as a child and a young adult.

But I’ll never get all of it. I’ll never get what’s interesting about the Kardashians or Paris Hilton or any other celebrity. I’ll never get why the news doesn’t cover the real issues: global warming, discrimination, the crashing of our economy by corporate bigwigs and Wall Street gamblers – and I’ll never get why small talk is so damned important that NTs have to fill up so much air with it. I’ll never get why people’s actions don’t match their words. And I’ll definitely never get why “nice” is so much more important than “honest.” I still have trouble with my need for black-and-white answers and one-true-way thinking. I am still not comfortable with nuance or ambiguity. I still hate new, and I still resist change. I still annoy people with my difficulty in shifting mental gears to adjust to rapid changes (even minor ones like changes in a conversation or going to a new restaurant for dinner). Make no mistake: I am still autistic, even though I fake NT really well these days. And I still need support that isn’t being provided, because Autism $peaks would rather spend money trying to eliminate people like me by making us “normal.”

It is not just my job to adjust to your world. It is also your job to adjust to mine, to do things my way when you are interacting with me. It is your job to be a little more literal in your speech, a little more honest about your intentions even if it’s embarrassing, a little more direct and a little more blunt. If I have to navigate through your indirect, metaphor-filled, obscure, “polite,” and confusing methods of communication, then I think it’s only fair that you should have to navigate through my direct, clear, blunt and fully honest (with no white lies) method of communication.

What I need support for is help with making ends meet. What I need help with is finding a way to get a job full-time doing what I love to do (teaching college) in spite of my social weirdnesses (and you try getting a tenure-track job without making everyone in a department think you’re going to be a good social fit during the interview process. It’s never about my academic qualifications; it’s about the fact that I’m socially strange). I need help with navigating social pitfalls and places where honesty is simply not tolerated (and help understanding why people can’t just say what they mean and mean what they say). And I always will need help with those things.

But this is still my autism. It belongs to me, it’s made me who I am, and I wouldn’t give it up for anything. It’s given me a sharply analytical mind, a single-minded passion for achieving what I need to achieve, and a perspective on the world that allows me to cut through the bullshit and point out the problems.

It’s not all roses and cookies. But it’s still my autism, and I wouldn’t be me without it.

COVID-19 Provides NTs With An Autistic Experience

I’ve been reading article after article about people who are struggling, now that working from home and videoconferencing are their new normal. Articles talking about how tired people are after being on videoconference all day are sprouting like dandelions after rain.

And I should not be amused, but I am – because many of these articles explain that being on videoconference is tiring because people can’t figure out facial expressions, tone of voice, and other nonverbal signals due to the vagaries of videoconferencing. One article even said that our (meaning NT) brains will interpret lags in video as dishonest hesitations, and choppy signals as stammering and stuttering. The nonverbal signals are not clear, and trying to interpret them anyway is what’s tiring people out.

Oh, really?

Excuse me while I laugh. Bitterly, maybe, but I need to laugh.

I should not be amused, but I am, because what this means is, for maybe the first time in their lives, NTs are getting a sense of how hard social interaction is when you’re autistic. When all you have is the words someone said because you can’t trust that their tone of voice or facial expression actually mean anything meaningful, but they’re annoyed with you because you aren’t picking up on those things without a lot of work and effort.

That is my life ALL. THE. TIME.

Being online is actually LESS tiring for me than being in person, because I don’t have to deal with the whole person’s body – all I can see is their face and shoulders, and maybe their hands. That’s a relief. Less nonverbal noise coming in, compared to the signal of their voice and the typed text they might have to send if there’s too much lag.

But apparently a lot of NTs out there are going absolutely nuts because they’re missing information they think is important.

Is this why they’re so desperate to get back to in-person, close gatherings? Maybe?

What I can hope is people just get used to video communication and stop depending so much on those vague nonverbals, but I doubt that will happen.

Still, this is what it’s like, NTs. This is what I go through every single day.

Black-and-White Thinking

I can’t stand ambiguity. It makes me want to curl up in a ball and scream. So when I have to deal with it in real life, it stresses me out terribly.
 
Part of the reason why is that I get into serious social trouble when I can’t figure out the shades of grey world that everyone else is operating in. There’s no firm standard, and no definitive “yes” or “no.” That is a bad, bad place for me to be – emotionally and physically. Trying to navigate that is like trying to find my way around town with no GPS and only a vague set of directions.

I need the world to be black and white, yes or no, right or wrong. When it goes grey, I go nuts trying to put it back the way it should be.

This is a problem when people’s opinions disagree with mine. If an outfit is hideous, to me, that’s objective fact, not opinion. Finding out that others like the outfit? Inconceivable. Completely impossible to understand.

Finding out that people who are in the same groups that I am don’t think about the world the same way I do breaks my brain. I’m a liberal, because liberals live in the real world. They deal in facts. So – conservative gays? Conservative autistics? My only response is “what the hell is WRONG with you?” There’s a writer on Quora that I can’t respect because he’s an openly conservative autistic, and that is not something I can reconcile.

It’s bad enough when we don’t share the same opinions, because when people don’t share my opinions about things I consider important, I lose respect for them rapidly. I still interact with them, but I don’t trust them. 

 
But when people’s opinions deviate from actual facts, I can’t interact with them at all. (And I know what the facts are – they are not just “my opinion” or “my perspective” – they’re facts.) 
 
I hate it when NTs abuse me with their “perspective” thing. Perspective doesn’t change the facts. It’s just another way that they lie to themselves so they don’t have to admit the facts.

It’s even worse when they accuse me of treating my opinions as facts. I don’t do that. I may not be able to trust you if you don’t share my opinions, but as long as they’re just opinions, I’ll put up with it.

Facts are different. Facts are black-and-white. They are not ambiguous. They are solid.

Facts exist, and you don’t get to have your own set. If you hurt me, that’s a fact, not my opinion. You don’t get to have a different “perspective” about it. I was hurt. Accept that it’s a fact, and if it was your fault, own that too.

If you voted for someone who is destroying my country, you don’t get to tell me your opinion is different. Your opinion is wrong – and that’s a fact.

Obviously, this loses me friends on the regular. On the other hand, if you’re going to insist that facts aren’t facts, I don’t really want to be around you anyway.

Why use “I am autistic” instead of “I have autism”?

As an autistic, I know where this debate comes from: parents of autistic children who want, desperately, for autism to be a temporary thing that goes away.

Me saying “I am autistic” negates that belief. It’s not going away. It’s permanent.

So the parents who want people to say “I have autism” or “I am a person with autism” are doing themselves and their autistic children no favors. Because their children are, and will always be, autistic.

It’s time to get over this and accept reality. But too many parents of autistic kids refuse to accept reality.

How do autistic people know they’re autistic?

A random “this question has been deleted” on Quora is what leads to this post, composed of my answer to the (inexplicably) deleted question. 

I thought everyone had problems with tags in the backs of their shirt and with wool. I thought everyone hated to be tickled like it was torture. I thought everyone was afraid of other people because of their total unpredictability. I thought that everyone knew that words meant what the words meant, and that tone was meaningless. I thought that everyone knew that “north” and “south” are meaningless and that “left” and “right” are easy to confuse. I thought that everyone knew that maps were just pretty pictures made of colored lines that had no other meaning.

Finding out that I don’t have the ability to “see” facial expressions or “hear” tone, that the reason I have trouble predicting what people will do is because I can’t see facial expressions or hear tone, was a shock and a relief.

When people started telling me that facial expressions and tones of voice meant something to them, I was at a total loss. Because to me, they don’t – with the exception of “loud” meaning “angry” and “not loud” meaning “not angry.” I couldn’t take that seriously at all – I actually laughed at the person who told me that tone means something.

When I found out that my difficulty with learning languages stemmed from my hyperlexia early on in my life, I was shocked to find out that it’s a common problem for autistics. I got angry at the person who airily said, “Oh, everyone can learn languages. It’s not that hard.”

Finding out that I’m autistic changed everything for me. I stopped trying to be normal and worked with what I was able to do instead. I now let myself fail when I try to learn languages instead of beating myself up because it’s so hard. I now tell people “I can’t hear your tone and I can’t really figure out facial expressions, so I might need to ask you what you mean in words.” I now tell people that I can’t handle the loud noises and that I can’t read a map. But until I knew I was autistic, I was like a deaf person who had no way of communicating with other people.

What Being Autistic Feels Like: Sensory Issues

Being autistic – at least the sensory aspects of being autistic – is like living your life with a permanent, all-body sunburn; with amplifiers over your ears and magnifying glasses over your eyes; with a floating bowl of smelly stuff under your nose (which, even when it’s good smells, can still be overwhelming); with your mouth full of flavors that are sometimes good and sometimes bad.

It means living your life with the volume turned up to 50 when most people’s volume is at 10, and when most people might, every now and then, achieve a volume of 15 to 20, tops. And not believing it when they tell you that for them the volume is at 10.

It means living your life with all this sensory input that can’t be toned down or ignored. Ever. At all.

When I walk across a carpet in bare feet, I still feel the individual pieces of carpet fiber even 20 or 30 minutes later. If someone is tapping a pencil, I can’t tune it out. If I’m walking to my car and my keys are jingling on a carabiner on my belt loop, I can’t ignore them. If the sink is dripping, I can never stop hearing it. In bed, it takes forever for me to finally get used to the blanket because I can feel it on every piece of exposed skin. I can’t even think about putting my hands into sand or playing in a sandbox, because the grittiness would set off all my nerves and they’d jangle for hours.

This means that often, I am too overwhelmed to hear what you’re saying or to pay attention to your face at the same time that you’re talking. It means that my entire body is pretty much on edge, all the time, no matter what. It’s why, when I get overloaded beyond this point, I shut down.

Hence, repetitive behaviors. Just as non-autistics self-soothe by rocking in a rocking chair, or jiggling their legs, or humming, I begin to rock, or flap, or grind my teeth, because it’s soothing.

There are other issues with autism, but if the sensory stuff would calm down, I might function better than I do.

Answer to a Clueless Nypical

On Quora, a neurotypical asked how autistics handle being so miserable about not fitting in to the standards of society. I admit it, I laughed at the question. My answer:

I don’t feel miserable. Why should I? I don’t give a damn about the “standards of society.” Many times they’re arbitrary, impossible to achieve, and irrelevant. I live my life on my terms.

I have a Ph.D. Would you like to tell me I haven’t “expressed my potential” or “realized myself”? I don’t think so.

As a Ph.D., I study those standards, because oftentimes, they’re amusing and interesting. At no time do I treat them as more important than my safety, my comfort, and my needs.

There will be people who will say that, by rejecting these impossible standards, I’m causing harm to others. That is patently false. Do I go out of my way to harm others or hurt them? No. But if the standard they are demanding is arbitrary or impossible to achieve, I have stopped trying to meet it. They’re the ones being unreasonable, especially if they are already aware that I’m autistic. I refuse to be shamed just because I lack the ability to meet arbitrary standards.

What Diagnosis Feels Like When You’re Autistic

When I was told my results, I started to laugh. I was relieved!

Having a documented explanation for why people don’t make sense, and why I was so stressed out trying to make them make sense? Relief.

Having a documented reason to stop trying to learn tone, facial expressions, body language, and unwritten rules? Relief.

Having a documented reason to give people when I say “You must be literal and direct, or I won’t get what you want – so be literal and direct,” and not be accused of making it up or self-diagnosing? Relief.

Having a documented explanation that I could give to my employer, which would require them to stop demanding things outside of the job description that I was not able to do? Relief.

Being able to see what I do as normal for me, no matter what other people think? Relief.

Yeah. Relief was my main reaction. That, and taking steps to ensure that I could not be harmed by institutional actions again due to the issues that my autism causes NTs to have with me.

Autism and Emotions

I’ve read a lot about emotions. I can write about them and I can even act them out if I have a definition.

But I have trouble identifying them in myself, so it’s hard to express them, because often I can’t get beyond “bad” as a description of what I’m feeling.

Nypicals (allistics) have a much broader range available to them. What I call “bad,” they might call “angry” or “jealous” or “frustrated” or “hurt” or “tired” or “annoyed” or “irritated” or “grieving” or any number of other things. I don’t have that range.

I can identify about four basic emotions, but I have to stop and really think about it: happy, sad, angry, afraid. When I start feeling more than one of them at once, supposedly, those create a new emotion (example: fear + happy = excited, supposedly). But I can’t identify those combinations reliably, or well.

Meanwhile, nypicals can drill down from feeling “good” to feeling “happy” to feeling “ecstatic,” or from feeling “bad” to feeling “angry” to feeling “irritated.” It must be interesting (and overwhelming) to have to know and label that many feelings. It’s insanely granular to me.

So… I may be expressing emotions, but I’m usually not aware that I’m doing so. I may seem angry when I’m just tired or frustrated. And usually, any expressions that nypicals would recognize only happen when I reach the end of my rope and have a meltdown.

So Your Child’s Been Diagnosed With Autism…

Here’s some things you can do to adjust to this reality and make your child’s life less hard.

Avoid Autism Speaks and any similar organization like the plague. They will encourage you to abuse your child using the Applied Behavior Analysis method, which is the same method used to try to make gay people straight, to force them to mimic non-autistic people. Even dog trainers will not use this method with their dogs because it is abusive.

Realize that your child is their autism. These two things are not separable. This is not a situation where it’s something that they have – it is something that they are.

Don’t call them a “person with autism.” It’s an attempt to trick your mind into thinking that somehow, the autism can be removed, eradicated, or erased. It can’t. They’re an autistic kid. Call them that, not a “child with autism.” Person-first language is degrading and invalidating.

Find adult autistics who can help you understand what it’s like to be autistic. Listen to us because we’ve been there. We know a ton more than any of the non-autistic “experts.”

You will have to change the way you live because your child will not be able to adjust on the fly, make quick changes in direction, or shift gears without a lot of lead time. Get used to giving ten-minute warnings: “Tommy, we’re going to get ready to go to Grandma’s in ten minutes… in five minutes… time to get ready!”

You will need to remember that what looks like loneliness to you is probably the best thing your autistic child could have: time where they don’t have to do exhausting social interaction with people who don’t care about rules or organization. Let everything happen at your child’s pace, not yours. Don’t force, push, or demand that they be extroverted, social, or have a lot of friends.

Be their first advocate and defender. Push back against people who demand that you make them “normal” or make them “act right.”

Learn to recognize a meltdown. It is not a temper tantrum. If you punish it like it is, you will permanently harm your child. Most autistics have some form of sensory integration disorder, where sounds are too loud, lights are too bright, and everything is moving too fast and it’s very confusing and overwhelming. When this gets to be too much – meltdowns happen. It’s your child saying “I can’t bear this anymore, please get me out of this situation.”

Your child’s senses may be jacked up beyond what you can believe. I can hear a fluorescent tube buzzing long before it goes out, and the sound is painful. I can’t stay in a room with a tube that’s buzzing. Get them ear guards and eye protection from bright lights. Don’t demand that they go to big parties or gatherings without them.

Don’t expect them to talk on schedule. Teach them ASL so that even if they can’t make their mouth do that talking thing, they can still communicate.

There’s a lot more, but last thing for this answer: remember that even if they cannot talk, they can hear you, and very likely they understand you. If you say that your life is ruined because they’re autistic and they’re anywhere in hearing distance, you have just said that directly to them. Don’t do this.