To the People Wondering Why I Struggle With Eye Contact
Dear concerned classmate, friend, co-worker or person on the street,
You may have noticed that at times talking to me can be a strange experience because I appear to be: looking down a lot, looking at a spot over your shoulder, flitting my eyes around like a spotlight, looking right through you as though we haven’t met, etc. You no doubt have had thoughts such as, “Wow, I wonder what’s wrong with her? She seemed so normal. What’s up with that?” I don’t blame you. If I were not a person on the autism spectrum living every day as a personal struggle with eye contact, I would most likely be thinking something similar.
But the truth is, I’m not a “snob” or “unfriendly” or “seriously disturbed.” There are many reasons why I may not be meeting your eyes in a consistent fashion, such as…
1. I may not recognize you — literally.
I have no idea what the statistics are on people with autism spectrum disorder (ASD) who also struggle with face blindness, but I’ve heard others mention this frightening experience and know I’m not alone. Maybe you see me on the street in an autistic daze or talking to someone, and you recognize me because we met at a meeting or a conference last week, so you call out to me in a friendly way, “Hey Wendy! How are you doing?” I may look up and then quickly look away in a blind panic because I’m desperately trying to figure out how I know you. When did we meet? How can I carry on a polite conversation or ask about our relationship without insulting you by making it perfectly plain that I don’t remember you without a name or some other context?
I only recognize the faces of people I know really well or interact with daily. I struggle to imprint your face during the first week I take a job or take a class with you at school or see you with my child at the hospital, and that imprinting doesn’t last unless I know you intimately. If I see the same nurse or classmate a month later in another context, I may not recognize that person. Ironically, my best move is usually to pretend that I struggle with names. I may make an embarrassed comment such as, “I am so sorry! I am awful with names! Please jog my memory!”
I’m actually pretty darn good with names. I have a mind like a computer, and when you give me your name, I will most likely be able to run it through my index and come back to you with, “Of course! We were at an autism conference together! How are you doing?” But because being “bad with names” is way more socially acceptable than suffering with face blindness, this is my best coping skill. If you ever encounter an autistic person who appears not to recognize you for whatever reason, please consider using your name or where you saw the person to spare them the pain and embarrassment. We will truly appreciate it, even if we are too embarrassed to say thank you!
2. It may just be too much, too soon.
Most people seem to have a built-in sense of knowing how to make suitable eye contact so that you can be warm and fuzzy with strangers without invasive fits of staring. To make a long story a bit shorter, I don’t. My brain is missing that wiring. If I make eye contact for more than a moment, I feel as though I’m staring at you, and I instinctively bounce my eyes away for two reasons. Ironically, number one is that I’m trying not to be rude!
The second reason is intimacy. Staring can be a pretty heavy thing. Every good romance movie or novel has that long, beautiful, pregnant moment when the hero and heroine lock eyes and truly “see each other” for the first time. Well, try to imagine being me. I’m feeling that kind of intensity pretty quickly, so if I barely know you, I’m going to feel awkward if I don’t look away quickly.
Of course, people with ASD are now told to look at a point on your forehead or over your shoulder if we can’t make real eye contact, but I don’t have to tell you how fake this looks. So I tend to settle for holding eye contact for as long as I can without feeling like I’m making a pass at you and then flitting my eyes away and making periodic eye contact.
3. I may be having a disembodied moment (or trying to avoid one).
Once again, I do not speak for all people with ASD, but I encounter a problem sometimes where if my eyes lock on any one spot for too long, I may find myself dissociating and having an out-of-body experience of sorts. I go into my head for either a few seconds or several minutes (I’m never quite sure), and when I emerge, I often find that my eyes have been focused in one spot the entire time. This is the most horrifying, of course, when I happen to have been looking at someone when I fuzzed out and realize I’ve been staring at someone indefinitely! And my friends wondered why it was too mortifying to approach the cute guy I thought I was stealing a glance at! That glance may very well have been 10 minutes long. Just another casualty of “dating while Aspie,” but I digress.
If I’ve been trying to make normal eye contact while chatting with you and I have this experience (treating you to a 20-second blank stare and then having to pretend I heard you for that time), know it was an accident, and it has nothing to do with how interesting you are as a person. Most likely, I’ll try to avoid this by keeping my eyes moving so as not to leave my body. This is a leading cause of pinball machine eyes, and ironically will make me appear bored while talking to you. Once again, my apologies. I’m trying to remain present with you in order to have a conversation I likely find quite interesting. Please keep this in mind when my eyes start freaking you out, and if you wonder if I’m trying to escape from you.
4. My face may be saying “too much” right now.
You may have noticed that some of us with ASD aren’t wonderful at moving our faces into socially appropriate facial expressions. I readily admit that it took me a lot of practice in front of mirrors to figure out what to get my face to do when I was “happy” or “angry,” but most of the time, my face will show the emotion it’s feeling when I want it to. The problem is that sometimes I don’t want it to. Sometimes when my life is truly and tragically emotional, it’s just written all over my face and burned into my gaze.
Maybe I see you in the grocery store, and we took a few classes together at college, and you say, “Hi Wendy, how’s it been going?” Maybe it isn’t going well at all. Maybe my eyes are saying, “Have you ever had one of those days where you didn’t want to get up this morning? My job is soul-crushing, and my husband doesn’t love me enough to think our marriage is worth saving, and do you ever wonder if life is worth living? Because I’ve been feeling that way for a week now, but when I tell people, they just ask me if I want to kill myself, and I am kind of afraid that I do.”
But even I as a person with ASD know that this isn’t socially appropriate. I barely know you after all. Even I know that if you see all of that in my face, you will walk away feeling as though you’ve seen a ghost or feel obligated to ask me questions that you don’t really want to know the answers to. So maybe I look away and tell you I’m fine so you’ll think I’m rude rather than heartbroken, and we can both go about our day. Maybe if I were neurotypical, I would be able to train my face to “do better,” even when my whole world is falling apart. But I am Aspie, and I just don’t have it in me. Please understand and forgive.
5. A whole host of other reasons that other people on the spectrum may have that I can’t even imagine.
This may be a pretty comprehensive list of why I look like I’m a pod person when talking to you, but I’m just one woman, after all. As is widely said, when you know one person with autism, you know one person with autism. I’d love to hear explanations from others on the autism spectrum for situations I may have missed. I find the similarities and differences fascinating.
And so if you’re still reading, I would make this suggestion. If you know someone with autism well enough that you’re not gawking at them like a Ripley’s Believe It or Not exhibit, maybe politely and sincerely ask sometime. I never mind being honest if I know you, and you might learn something. Also the person on the autism spectrum might be pleasantly surprised that you care enough to ask. It could just be a win-win!
If the person doesn’t want to answer you or is unable to put the answer to such a profound question into words, don’t feel bad. I worked on this letter for a long time. Chalk up your experiences to having shared a somewhat awkward but possibly educational moment with an interesting if somewhat unusual person, and don’t take their unusual gaze personally.
I will leave you with this parting thought: the bizarre eye contact situation is almost never about you!
Best wishes and thank you for reading,
If you or someone you know needs help, please visit the National Suicide Prevention Lifeline. You can also reach the Crisis Text Line by texting “START” to 741-741. Head here for a list of crisis centers around the world.
The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.