14 People with Autism Share What It’s Like to be On the SpectrumA. Stout
“What is it like to be on the autism spectrum?”
It’s a question many neurotypicals have, but it’s not always easy for people with autism to answer. After all, how do you explain something when that’s all you know? And how can you explain the autism experience when it’s so diverse?
However, a number of Reddit users on the spectrum rose up to the challenge and described what life was like—explaining their minds, struggles, frustrations, and day-to-day experiences.
It should be noted that most people who responded have Asperger’s, but there was one individual with PDD-NOS and one with classic autism—both of whom we were sure to include because we want to hear about life from all ends of the autism spectrum! Check out what they had to say!
(Note: responses have been edited for length, spelling, grammar, and language.)
1. The Play Analogy
“I feel like I’m in a play and everyone else has the script but me. They just seem to know how to do things, make friends, get ahead in jobs, deal with difficult people. I’m 40 and I could never be anything important because I just don’t know how to human.” —never_ever_right
2. Broken Bumper Cars
“For me, autism is a bit like driving a bumper car with poor reactivity—I can see the track, but the steering wheels aren’t always too connected to the wheels at the bottom, so there’s sometimes a lot of sliding about and smashing into walls.” —VibratingColors
3. Functioning Labels
“I hate having the term ‘high functioning’ associated with my condition, not only because I don’t feel like I’m high functioning at all, but also because I feel that those around me don’t think of it as something that hurts me and causes me difficulties in my daily life, but something that I have an ‘on/off switch’ that I just insist on having ‘on.'” —dollyfox
4. Communication Is Like Mixing Paint
“Communication is really hard. It’s hard for two reasons.
“First….I say a sentence, and someone else hears the sentence but randomly inserts words into it. What I meant to say were the exact words I said, but they decided to hear some additional or different words. I’ve already expended all of my energy into the first attempt. I don’t have the energy for another attempt, so I’m going to have to just go with whatever they heard.
“Second, and more common, thoughts aren’t words, but words are the only tool I have with which to express them. A thought needs to change into something else in order for anyone else to understand it. I can’t just lift the thought and give it to someone, I have to change it until it fits into a format someone else will understand. Having done that, I am no longer expressing what I wanted to. It reminds me of paint. If I want a specific shade of green, I have to take the blue and the yellow and mix them together. I have to keep adding bits of blue and bits of green until I have the shade I want—only now I’ve mixed so much paint that I don’t know what to do with it all. I just wanted a bit of green. Now I have four different shades and a mess, and I’ve wasted all that paint. That’s what turning thought into words is like. It’s messy and wasteful and always results in an insane, unnecessary amount of words.” —Yeeshas_Island
“I can’t seem to handle ambiguity very well. Like, you know that “Step 2: Draw the rest of the…owl” picture? That’s sort of what a lot of instructions are like for me, so I need to keep asking for clarification.” —Mantonization
6. Transitions and Interruptions
“If I’m concentrating, interruptions are almost physically painful. It’s just extremely jarring, any sort of physical tapping or prompt to get my attention at those times is more equivalent to forcibly being pulled away from what I’m doing. This is because it’s a major interrupt—I don’t expect it, so for a moment it does entirely pull my attention away from what I’m doing (and destroy my focus). In general for physical contact, it just helps to be aware it’s coming.” —RCIX
7. Social Anxiety
“For me, I question virtually everything I do that concerns other people. I never know if I talked too much or little, if I breached the wrong subject, if it was okay for me to say anything at all, if I was too strict on a subject or too loose, if I walked or stood too close or far away from people, if I looked at their faces too much or too little, if my clothes were appropriate for the occasion… everything.” —MrXian
8. “Passing” as Neurotypical
“I can pretend quite well. Doing everything right is like a complex choreographed dance that everyone somehow automatically knows, except me. For me, I have to think about every step meticulously in order to not do it wrong. I can do it, but it takes so much effort that I don’t enjoy the interaction and the person I’m talking about doesn’t even get an impression of ‘me’ anyway. They just see the act.” —MatchstickMonster
9. Analyzing Life
“I’m living my whole life in my head. Not really experiencing life, instead I’m constantly trying to analyse everything around me. How people walk, the way the leaves move outside, how sound propagates through walls, etc.
“I easily get overwhelmed by this, and can barely focus on important things in life.” —Teetano
10. A Mind Like Google
“My mind works sort of like Google, one link sends you to two more links and so on. So when I talk, I get lost in my world of knowledge, because I have to share all of my did-you-know’s and all of my did-you-know’s did-you-know’s. Want to know how to find the circumference of a circle? Why sure here is a history of pie! What’s a kind of pie? Peach pie! Let me tell you about Georgia! And Otis Redding, did you know he died in a plane crash? Here’s a list of musicians who died in plane crash. I JUST DON’T KNOW WHERE TO STOP.” —VelvetMoon
11. Sensory Sensitivities
“I feel like I’m far more sensitive to stimuli than non-autistic people….there are lots of instances where I’ll be bothered by something that isn’t bothering anybody else. I also have extreme difficulty tuning background noise out. It’s like my brain has no filter for it. If I’m at a party and there are 5 conversations going on at once, I won’t be able to concentrate on the one I’m trying to have. It ends up being quite overwhelming and if there’s loud music playing? Forget it.
“Sleeping can be difficult too. I need absolute silence to be able to fall asleep (although I find white noise helps). If somebody is snoring then that’s it—I will not fall asleep no matter how exhausted I am because my brain cannot tune it out.” —Neppey
12. When Facts > People
“I was diagnosed with an Autism spectrum disorder back in 2002. Up until that point, I would tend to fixate on subjects, such as paleontology, mineralogy, botany and mathematics, and learn everything I possibly could about them, as a distraction from not being able to fit in with other people.
“The easiest way to describe that? It’s like, my social life and social skills were just another small and unimportant piece of life, and weren’t something that I could master, so they didn’t matter. People weren’t very important, but damned if I didn’t know what the dinosaur with the thick skull plating was (Pachycephalosaurus) or the spiky one with a club tail (Ankylosaurus). In a world full of interesting facts, what’s the point in trying to understand arbitrary and impermanent concepts like sadness, anger, joy or fear? They’re too complex and conditional, and at least to my mind, learning how they worked for other people wasn’t as big an achievement as nailing my times tables out in year 1.” —Geminiilover
13. Struggles with Language and Perception
“Sometimes it is extremely difficult to talk to people, or to write. It takes me roughly three to five times the amount of time people normally take to write say, an essay. Sometimes I simply can’t talk because there are so many words, so many thoughts that I want to express and I have no idea how….When I talk, I often use odd language conventions, such as unusual sentence structure, analogies and metaphors that don’t directly relate to the feeling or sense that they are describing. It’s a bit like synesthesia, but also with thoughts, and to a lesser degree regarding the five senses. I perceive everything at once, and therefore nothing. It is very difficult to focus, relax, or calm my self down because at any given moment I am aware of all of my senses at once.” —TintedMonocle
“Every single finger movement, every current placement of limbs, every single everything is known at a given time. The pure concentration drives me mad at times but I have learnt to love it and drive this ability to maddeningly concentrate towards a physical means.” —Swate