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There are thousands of us—women who discovered our autism well into adulthood, well past many of the memories it explains. We’re too late in life to prevent a multitude of misunderstandings, yet too early in history to say, “I am autistic!” and trust that everyone will know what we mean.
We need to unpuzzle the past to heal our hearts, and the present to see who we are.
I tried to figure out which of my experiences are caused by autism, and which are merely me. I eventually concluded that there’s no difference between the two. Autism affects all of my experiences, but it does so in ways that are unique to me.
I thought communication was hard because I’m awkward and annoying. It’s actually hard because I put extraordinary effort into processing and analyzing words, meanwhile missing the hidden meanings in gestures and tone.
I did notice that I often felt off-balance and in need of a hug, but I didn’t make the connection to sensory overload. I could have done more to protect myself from feeling overwhelmed if I hadn’t assumed my sensitivity was unreasonable.
At some point, enough is enough. At some point, you have to abandon the urge to justify yourself further, because it’s a moving target. If you find comfort and joy in the same things that give autistic people comfort and joy, then no one can take that away.
autism itself is an internal state that causes different actions in different people. Does it have external effects? Sure—in how I move, speak, react, and position my body. But if you took away all of that, my mind would still be autistic. No matter how I appear on the outside, I will always be autistic on the inside.
in the DSM, autism has been defined by a list of behaviors. On closer examination, most of those are traits that a certain kind of mind exhibits under distress.
Autistic people process information differently, because our brains are hyper-connected in some places and less connected in others. This difference is visible on brain scans—we have neural pathways that others don’t, like secret passages all over our brains. This results in a torrent of information for each of us to process, including physical sensations and pattern recognition.
By default, everything is intense, which has been called “Intense World Theory.” We survive by filtering some parts out. It’s as if every form of input has a volume knob, and ours are all the way up by default—so we turn some down to compensate, but can’t control which ones. And here’s what creates the variety: Different people filter out different kinds of information. Then, what we don’t filter out becomes our focus. It’s comforting, and often necessary, to drown out the noise by turning all of our attention to one thing at a time, which has been called “Monotropism.”
With such intense focus, we often miss clues about what will happen next in our environment and interactions. Thus, a lot of autistic distress comes fr...
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It affects our social interactions, communication, relationships, physical movements, habits, interests, and sensory experiences—all of which are mentioned in the DSM. However, autism can cause additional effects beyond what the DSM describes, especially when it intersects with co-occurring conditions. There’s a kaleidoscope of ways to be autistic, and that’s why we call it a spectrum.
Autistic people tend to notice spoken language more than body language and tone. Most of us notice surprising sights and sounds more than consistent ones, and pay more attention to sensory input in general than the average person does.
We often turn to predictable foods, objects, phrases, and interests, because they shield our bodies from shock and our minds from mystery.
Some autistics, in some circumstances, can learn to notice some of the things we naturally ignore. But it’s easy for non-autistics to forget that we aren’t just replacing one focus of attention with another. Rather, we’re adding more kinds of information on top of what we naturally notice. That can feel incredibly overwhelming. Meltdowns and shutdowns, which are often considered symptoms of autism, can result from the strain of pulling our attention in too many directions.
I still had a lingering sense that to some people, I would always be seen as annoying and weird. That’s why it was incredibly affirming to learn the root cause of all my quirks. Autism gave me a more complete, more accurate self-image than the unflattering labels that I previously believed.
Why am I so precise and literal? Because autistic people deal with so much misunderstanding and miscommunication in areas that aren’t clearly defined, like tone. So when something is possible for me to clarify—like a homework assignment, or my own motives—then I feel driven to do so.
like to tuck myself away in a corner, because it gives me some safety for my senses.
I believe that autism can be a superpower, because it means perceiving an abundance of sensory details and patterns. Some things are overwhelmingly beautiful. I also believe that autism can be a disability, because it means struggling to process all that information. Some things are just plain overwhelming.
my favorite way to think of autism is this: I miss what others catch, and I catch what others miss.
I hardly ever feel completely at ease in my body. Usually, something is too cold or too hot, too wobbly or too firm, too tight or too loose—it’s very rare for everything to feel just right.
there are moments when the outdoor air is exactly as warm as my skin, turning the sunshine into an embrace and the breeze into a caress, and in those moments I believe that bodies must be the most marvelous invention in history.
it’s as if I was born into a fairytale, with a fairy who came to my christening and told everyone, “She will feel everything!” Would that be a good gift...
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Sensory sensitivity is a wonderful gift when it causes me to appreciate beauty.
Sensory sensitivity is challenging when it causes me pain, though.
Before I found out that I take in more sensory data than most people, I wasn’t able to explain how water affects me. My inner narrative didn’t include the observation that rain hurts my skin, because every time I flinched at it, people would say, “It won’t hurt you!” For someone with sensory sensitivity, who takes things literally, this is confusing and unhelpful to hear. It’s also inaccurate. What they really meant was that it won’t harm me. But because I took them literally, I never thought to label the feeling as pain.
I think it’s important to trust the words that people use to describe how they feel, but also to notice what they’re communicating through behavior. If someone had trusted that my reactions to rain were reasonable, I might have trusted myself a lot sooner, too.
Sometimes, sensory delight can outweigh sensory pain. Water becomes less of a problem for me when there’s more of it, like when I’m swimming in an ocean.
It feels so good, deep in my bones, to move myself through the otherworldly substance, buoyed up by the rhythm of waves or propelled forward in exhilaration as they crash. Yet it feels so terrible when wet skin meets the air, and trickling droplets transform into sharp pricks by the slightest breath of wind. I wish that I could be in water without water being on me. But some kinds of heaven are worth going through hell, and water can be both.
“Do you have any plans for them?” I asked. “Ideas for what to write?” “No,” he answered. “I just like them.” What? I thought. You can just do that? You can keep something simply because you like it, free from any pressure to use it for a particular purpose?
I wish I had learned earlier in life that it’s okay to enjoy things for sensory reasons alone.
No one told me that it’s fine to keep things just because they feel nice. No one told me that it’s perfectly acceptable, even as an adult, to line up a row of soft blocks and push down on each one, feeling it flatten and watching it rise again, as a calming break from a chaotic world. No one told me, because I never asked. I just assumed it wasn’t okay, because it wasn’t what other people did.
little autistic girls are often more conscientious than other kids about doing what’s expected,
A benefit of avoiding sensory distress is that it increases my ability to handle everything else. When a situation gets easier on a sensory level, it gets easier on an intellectual level too.
when my gut seems to go against common sense. It’s not that I always go with my gut, but at least I respect its potential wisdom and try to understand it.
There is a myth that autistic people lack empathy. Maybe it’s because we can’t always tell how people feel from their facial expressions alone. Or maybe it’s because we often express empathy in different ways than they would. Sensory empathy, in particular, may sometimes be too intense for us to process and put into words.
Deeply feeling what others feel is, I believe, one of the greatest gifts autistic people have to offer the world.
When others are in pain and I feel it too, it comforts me to remember that such empathy is a beautiful thing, because it moves me to help. The same emotion that feels like weakness may someday alert me to someone’s deep need. This hopefulness and purpose make it easier for me to bear someone’s pain in moments when I can do nothing to help. I also try to remind myself that whatever they’re ...
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a person can be both smart and slow.
I can’t handle a barrage of facts, descending haphazardly into my mind like Tetris. I freeze up, game over. However, I can handle extremely complex information if you give it to me one bite at a time, with pauses in between to digest each new fact.
The more years I spend exploring my brain and analyzing my challenges, the more I realize the vital importance and wide-ranging benefits of this one simple accommodation: Time.
Even when it’s possible for me to talk fluently, I still process ideas much better through writing. Talking feels messy, but writing clarifies and crystallizes all my thoughts and feelings.
I especially benefit from making a list, any sort of list—a history of what happened, a plan for next steps, or simply an inventory of the thoughts taking up space in my brain. If I see my ideas in text form, it’s easier to organize and remember them, as well as notice connections.
When I’m writing, I often ramble a bit before stumbling on the main idea. I might delete the first half of a draft, move the last sentence to the beginning, and make other adjustments before finally sharing it. Now, imagine what...
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Information can be sensory or social, visual or verbal, absorbing the present moment or assessing future possibilities. All of it has to go through some sort of processing before I’m able to act on it. But with enough external calm, and enough time to think, my mind is a very pleasant place to be.
“You can’t contain all the happiness in one place, so you have to distribute it across space.” That’s true for both positive and negative emotions.
Here is how it feels to need a hug, and then to get one: • My self spills out of my body in every direction, like a punctured barrel. A hug plugs up the holes, keeping me intact. • My thoughts swarm around my head, fuzzy and uncatchable. A hug gathers them up, pauses their motion, and sets them down where I can see them. • My arms don’t know where they want to be. Any position I take feels awkward and wrong. A hug slides me back into place, snugly fitting into my own existence.
whether you’re autistic or not, here are some ideas that might feel surprisingly good: • Rocking: Play a song that you enjoy, something that usually makes you sway from side to side. This time, though, try swaying forward and backward. • Compression: If you can, ask someone you love to hug you tightly for a whole minute. If you can’t, make a pile of every blanket you own and then crawl underneath. • Textures: Close your eyes, reach into your closet, and touch various pieces of clothing until you find one that feels extra nice, or at least extra interesting. Stroke it gently, really noticing
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stimming doesn't take away control—it gives it.
When I’m already overstimulated, stimming calms me by drowning out the harsh feelings with nice, predictable ones. And when I’m understimulated, it awakens my senses to focus and be present.
