What Living With Autism Is Like for Me

Autism is unique; it comes in all shapes, forms, personalities. To this day, I’m still trying to come to terms with what living with autism really means. Now, as I stumble my way through the adult world, riding the tidal wave of my autism, it’s as unclear to me as a lake during an algal bloom, but there are some things that are inherently clear.

I pose to you a simple question, dear reader, merely as a thought exercise: When you hear the word “autism,” what’s the first thing you think about? A word, image, phrase. Think about it for a minute or two before you read on.

Trying to explain autism to someone who hasn’t ever experienced it before is more than a little difficult for me, for a couple of reasons. Either it’s because the immediate thought someone has about it is stereotypes of people with more severe autism — and it’s OK if that was what you first thought about. It’s the only association most have when it comes to autism. And many aspects of autism can look like the reactions of someone who grew up in an abusive household, or someone who’s introverted, or someone who’s socially awkward, it tends to be simplified into a lesser form of what it really is. But… here it is. As best as I know how to put it, as eloquently as I am capable of with the knowledge I have.

For me, living with autism is living in a world where subtlety of language is a foreign concept. You may understand the immediate words being thrown at you — you grew up using your mother tongue, after all — but if there is any hidden meaning in what they’re saying, it’s completely lost on you. It would be like if you went to a bar, and someone was flirting with you, but you didn’t realize that’s what they’re doing. Unless they do something obvious — offering to dance, or complimenting you (“You’re really sexy”) – it doesn’t really dawn on you they’re even doing it in the first place.

It’s having conversations, but all you have are words; body language and facial expression are also foreign concepts. Perhaps the best way to describe this is like having a conversation with a customer at work. You end up on the topic of what you’re studying in university, let’s say, and they ask you about it. You get super excited, because your major is a huge passion of yours, and you know so much about it. You start talking about the latest innovation that just happened, or the latest study that just got published, and you hope to be a part of that, and oh my gosh did you hear about this? You go off like a bullet from a gun, and you don’t realize they’re actually trying to leave. They still seem interested, they’re nodding, they’re using those affirmative words: “Uh-huh, OK, cool!” They’re walking out the door, and you’re still talking about it because they actually asked you about it! You get so excited about this passion that you can’t stop talking, and you just can’t pick up on if the person is getting bored or trying to get out of it.

It’s going to the mall to shop, but everything is happening within milliseconds. You enter the mall, and it feels like you got splashed by a bucket of ice water unexpectedly. There’s so much happening all around you, your senses are getting shaken, battered, beaten. The lights become painfully blinding, the smells become a rash on your nostrils, the multiple conversations and noises happening all around you are like an unreachable itch you can’t not think about, and walking becomes a chore because you feel so claustrophobic. People. Are. Everywhere. You know you have to be here because you have an errand to run, but it’s wearing you down to your bare bones. It’s a constant onslaught of extreme proportions; the sooner you can get out of here, the better. The only thing preventing you from curling up into a ball is the music you’re playing at almost maximum volume, hoping beyond all hope that you can cancel out the multiple sounds blaring away at exactly the same instant.

It’s going in for a job interview, but you don’t get the job because you weren’t making eye contact with the interviewer. Eye contact makes you uncomfortable; eye contact is the bane of your existence. It’s a quiet room, but still, your brain is constantly going, processing, taking in, all the time, and your eyes are darting to the left, to the right, to the interviewer’s face, to the table, your hands, the ceiling, the face again, the lights (what’s that irritable buzzing?), the walls (there’s a stain; what is that?), the face (that nose is really big). You find out later from your friend (they were the ones who got you this interview; this manager is a friend of theirs) that you were pegged as a drug user. Well… shit.

It’s sitting in the exam room, and your leg is bouncing up and down. You can’t sit still. You need to constantly be moving, doing something. The movement of the pen on paper isn’t enough. Every couple of minutes you’re looking up, around the room, at all the others taking the same exam, and you end up wondering what might be going through their heads. That low hum from the lights is really irritating you, causing you to become even more restless because you can’t put in your own music to drown it out. You’re trying your hardest to not look like you’re cheating, but the constant movement is the only way you can focus.

It’s having a conversation with a group of people — your friends, perhaps, or if you’re a server, a table you’re serving — but you can’t focus. There’s so much happening all around you, and you find yourself, more than once, asking for a repeat of what was just said because you didn’t quite catch it. It isn’t that your brain is somewhere else, or that you’re daydreaming, but that your brain is trying its very best to focus on this conversation while inadvertently taking in information from everywhere else. It makes some people irritated with you, but maybe some people actually understand, and are patient enough to repeat it back to you in the same tone of voice. Those are the ones you love, because whether or not they know about your autism, they’re actually being nice about it.

It’s trying to make new friends, but you don’t know how to approach someone, or what to say, or how to say something, because you don’t know whether they’ll like you, or if they’ll actually listen to what you have to say. You hate small talk, despise it, and try to have intelligent conversations wherever possible, but unless they share your interest, it just dies and you can’t save it. You don’t know how. You don’t have the right certifications to perform CPR on it. You also don’t know how you come across, and that terrifies you. You don’t know what is socially correct and incorrect; you feel like you’re projecting one way, but it’s being interpreted another way by another person (and you only know about that because you’ve had friends, and co-workers, point that out to you before). You’re scared by social interactions, because you don’t know how you’re being interpreted. You don’t know how to interpret the other person unless it’s a very obvious emotion you’re familiar with (happiness, extreme anger, noticeable sadness). You don’t know social niceties.

It’s never knowing if you can reveal your disability to someone, because you don’t know how they’ll react. You’ve had people from all walks of life and all levels of authority immediately change how they interact with you. One instant, you’re a fellow adult, but in the next, you’re suddenly a 5-year-old in their eyes, with no knowledge of how to do anything. You’ve been told you’re lying; how can that be? Because you’re not showing the stereotypical signs of autism. “How in the world can you have autism; you seem fine to me!” You’ve been insulted, belittled, ignored and stomped on; you’ve been scoffed at, had eyes rolled at you, and had names thrown at you. You’re internalized all the time because you don’t know who you can tell, but you know you can’t deal with it alone. Not fully.

It’s feeling like a burden. Every day. Every minute. Every second. You know you’re different, and you’ve tried your hardest to hide your disability and project yourself as typical, and some days it works. No one even bats an eye, but it doesn’t take much for all of that to fall apart. The scariest part? You never know when it will fall apart. It happens in the blink of an eye, in one inhalation of breath, in one snap of the fingers. You’re walking on eggshells every day, trying to protect yourself from the outside world, wondering when the next breakdown will happen. That fear adds to the burden you feel, the burden of trying to process the world around you, trying to make sense of all the information being thrown at you, and knowing you are an outsider.

You know something, dear reader? Living with autism has given me many things. It may be incredibly difficult, and I do find myself wondering why I was given a brain like mine, but it’s given me such a unique perspective on life. I see colors so vividly in my mind, and feel them so closely, I can come up with a million and one ways to describe them. My outside perspective on society has given me a very unique view on it, on humanity and on the human mind. My favorite pastime is to wonder the life story of almost every single person I interact with or see every day. My imagination is so active, it takes me next to no time at all to come up with a fictional world: the colors, the sights, the sounds, the smells, the beings within it, the time of day, what’s happening in that moment, the history; I can imagine it so profoundly, I can experience it as though I were actually there. I philosophize every day about the meaning of life, the universe, whether we are alone out there, how big it is, how it works.

To this day I find myself trying to understand my autism, because it presents unique questions I genuinely don’t have all the answers to. It’s a blessing as much as it is a curse, and no two days are ever the same in my mind. The adult world is a tumultuous place, and I struggle to find my way through it every day. At times it can be the warmth of a maternal hug; at others, it’s a slap in the face. It is my hope that over time, people will begin to understand autism, and the adult world will not be the walk on eggshells it now is for me.

I end this with the same question I opened with, in the hopes that maybe, just maybe, your thoughts have changed: When you hear the word “autism,” what’s the first thing you think about?

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Getty image by Updog Designs.