I am autistic.
It’s been a process of literally years to come to the point where I can embrace the word.
From the first inkling of “that sounds like me” to realizing it also describes my daughter to truly understanding what the autistic brain looks like from the inside and fully accepting that it one-hundred percent describes me has taken research, exploration, analysis of my own actions and thought processes.
I am autistic.
And I’ve waffled between “do I ‘unmask’ and tell people or do I keep it to myself?” Even now, when my mind has completely accepted it, it’s scary to tell anyone else. What if people don’t believe me? What if they think I’m trying to get attention for myself?
I almost kept it to myself. A friend described admitting to autism as feeling a bit like a scarlet letter, and it kind of does.
But then I remembered the people who shared their own experiences, the people who first suggested that this scarlet “A” might describe me, and how much this journey has helped me.
And so I share, in the hopes that my vulnerability may help someone else who has always known they are different. Someone who has both loved and hated the ways they are different. Someone who knows they are different but doesn’t know why.
Someone else with autism.
What is autism?
The first time I remember the word “autism” being used to describe me was when I was a child in my church’s AWANA program.
It was game time, and my team was sitting on the floor. I began to rock back and forth for no discernible reason–I just started it, and it felt good, so I kept doing it.
Another child told me, “You look like you have autism.”
I didn’t fully know what that word meant. But I knew this boy’s brother had Down’s syndrome, and I knew I didn’t have that. So I stopped rocking and made sure to try not to do it again.
Over the past few years the subject has come up in various settings. And because I’m autistic, I’ve done extensive research. The thing is, autism doesn’t look the way many people think it does. It’s not just “Rain Man” (who, incidentally, was later found not to be autistic but to have a different condition).
Fundamentally, autism is about the way your brain processes information. Brain scans show that autistic people have fewer connections between the social areas in their brains and more connections in the sensory areas.
We struggle with social settings and receive a constant onslaught of sensory information.
As Annie Kotowicz says in her excellent book What I Mean When I Say I’m Autistic, “I miss what others catch, and I catch what others miss.”
For some people, those differences are more debilitating than for others. As an 18-year-old, I worked at an assisted living facility for people with mental disabilities, including a young man with autism. He was incapable of living alone.
By contrast, if you know me in person, you may not realize I’m autistic. It may surprise you if I tell you I am.
I have been practicing “fitting in” for my entire almost 39 years of life by imitating the people around me. This imitation is referred to as “masking,” and is also probably the primary reason that autism often looks different in females than it does in males. We tend to care more about fitting in and looking “normal.”
I don’t know how successful my mask is because I cannot see myself from the perspective of a non-autistic person. But my guess is that you might notice something seems a bit different without realizing exactly what.
Here are some of the ways I’m different that I’ve realized are symptoms of my autism.
Sensory Sensitivity
An autistic person’s brain receives detailed sensory input constantly, and the intensity of that input affects us in ways it doesn’t affect non-autistic people.
Seams on clothes always bothered me if they weren’t on right. Certain foods had textures that made me gag.
I hate the feeling of wet grass on my feet or putting on clothes when my body is slightly damp, and the feel and sound of cotton balls or styrofoam makes me shudder.
Now that I have children I’m realizing how sensitive I can be to loud or constant noise.
I’ve always worked hard to make myself extra quiet, and it bothers me when people are too loud. You may have heard the stereotype that autistic people are loud, and that can definitely be true. (I have one of them in my house.)
But it can also be true that we’re too quiet. I’ve always had a hard time making myself heard because my own voice sounds so loud to me.
I see patterns in everything and count things without even realizing it. I can sometimes play back a repetitive sound in my mind–like someone knocking–and count it after the fact if I didn’t count it when it happened.
My husband says I have a “super sniffer” because of my sensitive sense of smell. I smell things that other people don’t.
The onslaught of sensory information can also cause us to block out certain senses. I’ve personally noticed that I often ignore visual stimuli, since things like driving can be confusing if I pay too much attention to the constant distractions. It also means I sometimes don’t notice the messes in my house until they become overwhelming.
My daughter, on the other hand, tends to block out sound. For a little while we thought she might have hearing loss because it took repeated attempts to get her to respond to us.
Stimming
Self-stimulation, or “stimming” for short, is a way of creating predictable physical stimuli to help cope with the unpredictability of a world that is too loud, too bright, too cluttered, too smelly, and sometimes just feels wrong.
As I learned that obvious stimming like rocking was socially “weird,” I replaced my more visible “stims” with less-obvious ones, such as curling my toes up in my shoes, tapping and grinding my teeth, rocking only when music was playing, popping my knuckles, doing repetitive tasks to an internal rhythm, moving my eyebrows or nose, wiggling or tapping my fingers, pinching my lip, smelling my hair or other random objects… I sing, I dance, I put together random words into interesting-sounding phrases, and I make percussive rhythms with my hands.
In high school I went through a phase of repeating things that people said, trying to mimic the exact ways they’d said them. People thought I was mocking them, so it didn’t last for long, but the sounds fascinated me and I wanted to see if I could reproduce them. This is a form of verbal stimming that I now know is called echolalia.
Stimming is an area where realizing I’m autistic has been an enormous relief for me. I used to think I had OCD or there was something else terribly wrong with me because no matter how hard I tried, I literally could Not. Stop. Doing these repetitive motions.
I’ve since learned that not stimming actually has negative mental health effects for an autistic person because the external stimuli becomes too overwhelming. So I am learning to embrace my stims, even if they make me look a little weird. It makes a noticeable difference in my mental and emotional wellbeing.
Slower mental processing
Autistic brains tend to process information more slowly than those of non-autistic people. It’s not that we aren’t intelligent or that we can’t process the information; it’s that we often need more time to do so.
Annie Kotowicz says, “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.”
If something happens that surprises me, I struggle to quickly respond appropriately.
Difficulty with social settings
In social settings, this slower processing makes conversation difficult.
Sometimes I can literally feel my brain struggling to process what someone has said–repeating the sounds over and over in my head until they (hopefully) turn into intelligible words, or repeating the words until they take on comprehensible meaning, or both.
Autistic people may come up with scripts ahead of time so that we know how to respond and what to say next. I’ve practiced conversations and facial expressions in front of the mirror to make sure I look “normal.”
My slower processing is the reason I have always felt more comfortable with written language than spoken language. It is also why, though I may seem shy, I’m fairly comfortable giving presentations or performing in front of crowds–in those settings I have a script to follow that I’ve had plenty of time to rehearse. So I know what’s supposed to come next.
In college, I felt like I got pretty good at the script of “getting to know you” questions, but after that it became very awkward to maintain conversation because I didn’t know how to talk to people after the “where are you from, what are you studying, what year are you” conversations were over.
Difficulty with conversation means that forming or maintaining friendships is hard. I’ll avoid initiating conversation even with people I like or want to get to know better because it’s just painful to stand there not knowing what to say.
I, like many other people with autism, can often talk fairly fluently about my special interests, assuming I’m not overstimulated for some reason. But unless we have one or more shared interests, it is very difficult for me to converse.
When I do talk about my special interests, I tend to info dump (as I’m probably doing right now) or overshare. I have a hard time knowing when someone is getting bored or what is appropriate to tell someone. So sometimes my masking means I don’t say anything even about my special interests.
I like to have people around me, but I usually leave the conversation to others. It’s something of a joke between my husband and me that I like to invite people over and let him talk to them.
I also often rely on other people’s reactions to determine how I should react, such as when I’m not sure if something was meant to be a joke.
Sometimes it feels like my brain turns to goo, and the best I can do is stop listening for words and start looking for other cues for how I should respond. In those cases I just hope that my smiles or nods or frowns are appropriate to what the person is actually saying.
Before I say anything I will often rehearse it several times in my mind to make sure it comes out right. By the time I get it right, I sometimes find the conversation has moved on without me before I have a chance to make my contribution.
The people I feel most comfortable with are the ones who can carry a conversation, asking the right questions to pull me along with them… or just doing all the talking themselves.
I have sometimes found myself misunderstood in social settings. In junior high people thought I was a snob because I hardly ever talked to anyone but my cousin. In college when I tried to be more social by imitating the people who were good at social expectations, I was seen as a flirt when I wasn’t trying to be.
I’ve lost friendships without ever understanding why. It can be hard for me to tell if someone is upset with me. I often question my friendships and whether people actually like me.
The stereotypical autistic person doesn’t make eye contact. I once asked a teacher in junior high how you were supposed to make eye contact during a conversation because I couldn’t quite figure it out.
I think I do better with it now, and I can make eye contact, but it can be difficult and distracting. It can feel extremely intimate as well as confusing. I often look at noses or mouths instead of eyes.
The odds are good that if I’m making eye contact with you, I’m probably analyzing it the entire time: “Am I making enough eye contact? Too much eye contact? Is it OK for me to look away now? Do I look the appropriate amount of interested?”
I will usually look away if I’m speaking so that I can focus on my words, and sometimes I’m so distracted by thinking about maintaining appropriate eye contact and wondering whether I look normal that I’m not really hearing what people are saying to me.
I’m never sure how to end a conversation and it can be hard to tell when it’s my turn to talk.
After “bad” social interactions, I’ll spend huge amounts of time analyzing what went wrong, replaying it over and over again and trying to figure out how to fix it the next time.
Need for order and routines
I don’t have strict routines like some autistic people, but I do have specific ways I do certain tasks every time.
For example, I always brush my teeth in the same order and put my towel on the same way every time I shower. I load the dishwasher in roughly the same way every time and will reload the dishwasher if someone else does it the “wrong” way. It’s frustrating when we move and I have to figure out the right way to load the new dishwasher. I usually take the same route every time I go to a place, and it’s mildly distressing if someone else is driving and goes a different way.
I spend a lot of time figuring out how to optimize for the “best” way to do something so that I don’t have to figure it out again.
I also love symmetry and will stim in ways that feel symmetrical to me. It’s my way of putting things into an order that feels right.
Special interests
I am obsessive about learning about my special interests, which include the categories of language, music, technology, and health.
When I’m immersed in one of my interest “rabbit holes,” I have a habit of ignoring other things that should be priorities, such as housework or eating.
I quickly lose track of time and have to pull myself away to do what I should do instead. It’s very difficult to refocus my attention.
Emotional challenges
It has always been difficult for me to adequately understand and describe my emotions without intense effort. As such, I have tended to ignore them and bottle them up until it was impossible to contain them anymore.
Then I would have huge meltdowns. Over the years, my husband has pushed me to share my emotions as they come up. I’ve done a lot of work to find the words to express them before they become unbearable.
Even so, it can still be a challenge to recognize how my emotions are affecting me before they become overwhelming.
Difficulty making decisions
My brain deals with such huge amounts of sensory input; I immerse myself so deeply in my interests that I end up with massive amounts of information; and my brain processes all the information slowly. I think through all the possibilities and everything that could go wrong and question everything.
As a result of these factors (and maybe more), I find it difficult to sort through all the information to make decisions. My brain gets stuck in loops: I will make a decision only to reanalyze all the information all over again and find myself back at the same crossroads I thought I’d already crossed.
Yes, it drives my poor husband a little crazy when I get stuck in these loops.
I also tend to struggle with prioritizing tasks because I can’t process all the information to decide which is the most important.
The beauty of being autistic
Seeing the world differently definitely comes with disadvantages. But I can also truly appreciate the real beauty of it. It is a relief and a wonderful thing to finally have a word for what I always knew was different about me.
It’s encouraging to learn that these unique traits don’t mean I’m broken; they just mean my brain is wired differently.
My hyper-focus on my interests allows me to learn subjects very deeply, and it allows me to help other people understand things in ways they otherwise wouldn’t.
Realizing I and some of my loved ones are autistic is also allowing me to be more joyful in my parenting. Not only do I better know how to care for my own needs by recognizing how my brain is responding to certain triggers–autistic self care, if you will–I also think I better understand my children’s needs and why they behave in certain ways.
Are you autistic?
I want to point out that every autistic person is a unique individual. We may have commonalities, but we also all have our own unique struggles.
If you feel like you can identify with a lot of what I’ve said, it may be worth investigating the topic more, even if you don’t identify with all of it. Other autistic people struggle with things that aren’t an issue for me, and I have difficulties that others don’t. My daughter and I can often clash because she presents very differently from me, but I recognize the same root cause in both of us.
I would suggest starting with experiences of real autistic people. When I read clinical descriptions, they were harder to identify with than descriptions from real people’s lived experiences. It was only when I dove deeper into these experiences that I realized they really were describing me.
YouTube is a good place to start, with channels such as Mom On the Spectrum, Orion Kelly – That Autistic Guy, and I’m Autistic, Now What.
I also highly recommend What I Mean When I Say I’m Autistic, whether you yourself are autistic, think you might be autistic, know someone who is autistic, or just want to know more about what autism feels like from the inside.