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.

Social Dishonesty and Why It’s A Problem

Nearly all neurotypical/allistic communication is based on “understood” lies. Let’s call this “social dishonesty” – the accepted-among-neurotypicals/allistics lack of truth-telling while communicating.

Pretty much everything a neurotypical/allistic says in a social conversation is based on shading or hiding the truth somehow. This is just part of how neurotypical/allistic communication works, and apparently neurotypicals/allistics can’t speak clearly and without some hidden meaning without a lot of difficulty.

Here’s an example. I say, “How are you?”

The neurotypical/allistic says, “I’m fine.”

That’s a lie, because it does not tell me how they are. What does “fine” mean? It’s a nonword. It’s a way to duck the truth. It’s not the real truth.

I’ve had neurotypicals/allistics tell me this exchange is just “social noise,” and not literal, and so (for some reason) it’s not a lie. That saying “Fine” is a recognition of you being there and me being there. It’s a greeting ritual and doesn’t have to be literal.

Well, I can’t figure out what the non-literal meaning is (unless I’m told), and since all I can get from those words is their literal meaning, it IS a lie if your meaning isn’t the same as the literal meaning of the words you’re using.

“Little white lies.” “Politeness.” “Being nice.” “Hinting.” All of these are based on saying something that is not literally true, and expecting the other person to “get” the real meaning. How is that not a communication system based on lies?

Now, neurotypicals/allistics say that tone of voice, facial expression, and other invisible-to-me nonverbals are supposed to give me a clue that what they said was a joke, or wasn’t serious, or meant something else, so it’s not lying.

But I can’t see or perceive those nonverbals in real-time conversation. (I tell my students I can usually suss them out anywhere from three minutes to three years later, but in the moment? Never.) So that means that since all I get from your speech is the words, and the words don’t match your meaning, you’re lying to me, even if you don’t realize it (and 90% of the time, neurotypicals/allistics don’t realize it, and get angry when I tell them that this is how I receive their communication attempts).

This creates a situation where an autistic like me puzzles over why you are angry when all I did was tell the truth – and also puzzles over why neurotypicals/allistics say they value the truth when every conversation is based on lies.

It creates a situation where you assume that, like every neurotypical/allistic you know, some of what I say is a lie, and insert the lie (your interpretation of what I meant) into what I said, even though I didn’t say it. And then you get angry with me for a meaning I never expressed or intended, because you’re sure that must be what I “really” meant.

Until neurotypicals/allistics give up their social dishonesty, they won’t be able to communicate with autistics. And the neurotypicals/allistics are the ones who need to change, because I refuse to learn how to lie just so you don’t have to tell the truth.