To the People Wondering Why I Struggle With Eye Contact

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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,

Wendy

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.

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When Someone Asked, ‘Do You Wish You Never Had Him?’

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I was recently asked by someone, referring to my son, “Don’t you sometimes wish you never had him?”

The question wasn’t meant offensively, but I paused a moment, letting those words sink in. I didn’t pause because I had to ponder my answer; I paused because I was shocked at the question.

I’m not judging the person who asked me. Yes, it’s a harsh question. But it was an honest question, and I have no issues with speaking honestly and candidly about our journey.

“No,” I replied.

“Be honest,” she said.

“Honestly, no I don’t. I hate bipolar disorder. I hate when it makes him depressive. That, I wish we didn’t have to deal with,” I replied.

And that’s the truth. Even if someone asked me on one of our worst days, it would still be my answer.

Here’s our truth: he has bad days — days where I think to myself, “I don’t know if I can do this. I don’t know if he can do this.” Days, even weeks, where we can’t leave the house because he’s in such a deep depressive cycle, he can’t stop crying and screaming.

Days where he begs me to make it stop.

Days where he begs his brain to “leave him alone.”

Days where I won’t contact my family or interact with the followers on my page because I can’t leave him alone, and because I can’t stand the thought of talking with people and trying to act like everything’s OK.

But you know what? He perseveres. He gives us the strength to continue. He is the reason we are strong. He is the reason we keep on keeping on.

Through all of this, never once, not even for a split second, have I ever wished Liam wasn’t my son. I had seven miscarriages before he finally came into our lives, and I thank God for him every night. He’s one of the strongest people I know, and even on hard days, I’m happy he’s my son.

Follow this journey on A Legion for Liam.

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To the Musician Rob Thomas, From a Thankful Special Needs Mom

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Dear Rob Thomas,

My daughter, Sam, has been at home sick for the past three days. Since she can’t speak, this morning she grabbed my purse, took me by the hand and walked me to the door that leads to our garage. This meant she wanted a car ride, so I helped her into the car and off we went. I turned on the car stereo and began to listen to my playlist of your music. Sam hummed and kicked her right leg to the beat.

I was feeling tired, and I started to think about some of the heartache I’ve experienced as mom to a child with special needs. I thought about the moment my husband, John, and I found out about Sam’s cleft lip and palate; the moment I had to give Sam to the nurse for her first major surgical procedure; the moment we found out she was deaf; the moment we found out she would need special education; the moment we found out there was “something neurologically wrong” with her; the moment she was diagnosed with a chromosome 18 abnormality; and the moment she was officially “labeled” intellectually and developmentally delayed. I also thought about the moment when I blamed myself for her challenges. A tear rolled down my face, and then your song, “Little Wonders,” began to play.

That’s when I realized my thoughts were headed in the wrong direction.

I’ve never been one to wallow in self-pity, yet here I was, forgetting about the beauty and blessings that existed in “these twists and turns of fate,” as you put it. Sam is almost 15 years old. She is sweet, smart, beautiful and funny, and she’s becoming a fantastic nonverbal communicator. She is also strong, brave, loving, intuitive and even a little bossy! She has given me a special wisdom and compassion and has even taught me to celebrate life’s “little wonders,” every milestone she achieves and every moment in which she defies the odds. She also brings the most joyous, amazing moments and generous people into my life.

Thank you for being one of these generous people and for creating one of these amazing moments.

Thank you for teaming up with Michael Franti and his Do It For The Love Foundation to help grant Sam’s wish to meet you and see her first rock concert. If anyone would understand and help us grant a wish for Sam, my instinct told me it would be you, and I was right.

Thank you for having a gracious tour assistant and tour manager. Please let them know how much I appreciate their generosity and compassion, and the time they took to help coordinate Sam’s meet and greet with you.

Thank you for being the genuine person you are. Though I was star-struck, I felt like I could talk to you for hours.

Thank you for kindly and patiently listening to my stories about Sam.

Thank you for sitting next to Sam and understanding that she was having a shy moment. I assure you, she knew something truly special was happening.

Thank you for taking the time to say hello, shake our hands, give Sam your autograph, take photographs with us and share your warm hugs.

Thank you for giving my husband, John, and I the chance to see Sam giggle, smile, feel the vibration and kick to the beat of your music.

Thank you for the endearing and heartfelt sentiment behind the songs you write. Thank you for sharing your perspective in your music and giving hope and inspiration. Thank you for sharing your life, your lovely wife, Mari, and the challenges you have both encountered and overcome.

Thank you for reminding your fans that we all have things we deal with in our lives every day, and for encouraging us to forget about these things during your concert, sing your songs together and make a memory for us to share and hold onto forever.

Thank you for letting me know you read my children’s book about Sam.

Thank you for believing in hope, healing, music… and love.

Thank you for reminding me that “these little wonders still remain.”

Love,

Monica

Do It For The Love is a nonprofit wish-granting foundation that brings people living with life-threatening illnesses, children with severe challenges and wounded veterans to live concerts. Founded in 2013 by musician Michael Franti and ER nurse Sara Agah, Do It For The Love has, to date, granted more than 400 wishes, working with a wide variety of musicians. Through the healing power of music, our goal is to inspire joy, hope and lasting celebratory memories in the face of severe illness or trauma. Nominate someone online and learn more at www.DoItForTheLove.org.

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.

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You Don’t Need to Know My Child Has Autism to Show Him Kindness

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We’re always open about our son’s autism. It’s not like we make him wear a “Hey I’ve got autism!” t-shirt or badge. But we try to share his difficulties with the hope that people understand and then support him and us. Problems arise when we meet new people. Autism is invisible; they don’t see it. So many times we’ve heard the phrase, “But he looks normal; you don’t know by talking to him.”

Recently we had a family photo shoot. The pictures are beautiful, but for me they’re tinged with regret and disappointment. The photographer wanted us to pose in certain ways. The big lad really had trouble following the instructions. The photographer quickly lost patience, and it made him uncomfortable. Hubby and I stepped in, of course; we helped to place our big lad correctly and quickly explained he’s autistic. We tried to protect him, to spare his feelings. It hadn’t entered my head that he may have trouble with this, so we hadn’t prepared the photographer. But he could’ve had more patience and shown more kindness.

Autism isn’t invisible; it is always there …

In the shoe shop when he can’t hold his foot against the measuring device because he doesn’t feel it.

In the restaurant when he spills his drink or has trouble coordinating his knife and fork.

At the playground when he takes his time climbing to the top of the frame, up the slide or avoids anything that spins.

When he can’t find his shoes, bag, pencil, the iPad, etc., even when they’re in front of his face.

When he forgets to flush the toilet again.

When he has trouble buttoning his shirt or fastening his laces.

When he loses every race at sports day despite trying his best.

When he struggles to respond to a question asked.

In the library when he talks too loud.

When he can’t get the game out of the cupboard.

When he doesn’t look at the camera or in your eye.

At the hairdresser when he can’t stand the sound of the trimmers.

When the school year ends.

When he goes to a new place or meets new people.

When he misses verbal instructions.

At the birthday party he wasn’t invited to.

When he gets lost in the supermarket or restaurant.

When he worries that his brother is talking to strange kids (he is making friends).

When he repeats the same question or phrase over and over.

Autism is there when he runs, sleeps, eats, plays and speaks.

My fun, kind, clever son is often made to feel lazy, stupid, dumb, weird and unsuccessful. Not because he has autism, but because of the impatience of other people.

Thank you to the lady in the shoe shop who shows an enormous amount of patience and takes a long time to make sure the shoes fit properly.

Thank you to the teaching assistant who attends courses in her own time to learn how to help my son.

Thank you to the kids who wait patiently at the bottom of the slide.

Thank you to the kids’ club staff who know when to leave him alone and when to encourage him to join in.

Thank you to the friend who encouraged him to climb, who told him, “You can do it!”

Thank you to the therapist who showed him all the positive things about being autistic when he could only see the negative.

Thank you to the teachers who read the books and learn how to help.

Thank you to my friends who always listen.

Thank you to everyone who reads this story.

Thank you to all those people who smile.

Finally, thank you to the people who try to understand!

I don’t want my son to wear a badge or carry a card proclaiming his difference to the world. He shouldn’t need to! A little bit of kindness — a little bit of patience — make a huge difference.

Follow this journey on Diary of an Imperfect Mum.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? 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.

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To My Mom as I Sit Beside Her Hospital Bed

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Dear Mom,

I sit here at 3 a.m. in your hospital room, looking at you, with memories filling my mind. As a medic, I understand what is happening inside your body, although I can’t feel your pain. I feel helpless and unable to give you the comfort you need. I understand the cancer is growing in many places in your body. It kills me to know I will lose you soon.

As a medic, it’s my job to do whatever I can to save lives, but I am literally helpless right now, only watching as you slowly fade away day after day.

I remember when I was young, you tried to hold me and comfort me, but I only pushed you away. I somehow thought you would be just like my birth mom. But as I sit here listening to the IV pumps, I remember the times you showed me your love and care. I’m overwhelmed with sadness. Somehow I think when the doctors come in, they will tell me you’ll be OK, but time after time it’s only more bad news. I’m trying so hard to be strong for you and Dad, but I see the pain in Dad’s eyes. I see the tears fill up; I see the fear of losing the one person he loves in his eyes.

I feel lost and confused. I feel like I have failed you as a son. I’m unable to protect you and keep you safe.

As a medic, I see both life and death. It’s easy for me to separate my emotions when responding to a patient, but when it’s your mother, the lines get blurred, and you suddenly become lost in emotions and memories. I feel my emotions and body being stretched to its tearing point, and I have no idea when that’s coming. Yet to this day, I’m still standing strong, still comforting you in your last moments of life. Somehow I think doing more research on cancer will help me cope with all of this, but in reality, it’s only giving me more fear and doubt that you will feel better.

I want to say sorry for the times I never said I love you, that I never hugged you, for the times I didn’t call. I’m so sorry I was not the son you thought I would be, but I’m here now. 

It’s been a long night watching over you. I sit here in a chair with Dad passed out on the couch, and I think to myself, Finally, I can actually break down. A tear forms in my eye, and then more come, one after another. After a few minutes, I slap myself to snap out of it, thinking, You have to be strong for Mom, you have to be strong for Dad. I see your vitals drop, and one after another your organs fail. You’re on a morphine drip, and I can see you feel no pain. As I look at you, feeling so helpless, I think of all the times we had when I was young. The ECG machine alarms go off, your heart rate dips below 50 and I can tell you’re kissing death. Your blood pressure drops. More time is taken between each breath.

Minutes later, I hear you whisper, “Lord forgive me.” I see you take your last breath. I see your last heartbeat register on the machine… Flat line. No more heartbeats. No more breaths.

Forever I love you, Mom. Forever you will be with me.

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The Words Every NICU Parent Deserves to Hear Before Leaving the Hospital

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Parents who have spent time in the NICU know as the day of discharge approaches, you’re alternately thrilled and petrified.

Will I be able to do this?

She’s already been through so much!

What if…? 

A million what ifs run around your addled mind, some too terrible to even acknowledge.

I was bend over my daughter’s crib with her tiny hand in mine. After all her determination, she still only weighs 4 pounds, 9 ounces, and we had to purchase a special car seat just to get her home. I can tell she absolutely knows I’m her mama and we’ll continue to walk through whatever fire is placed in our path.

After 110 days, multiple surgeries and scares, we’re going home with a trach, g-tube and nursing care. My lovingly designed nursery is overrun with necessary medical equipment. I’m still adjusting to sleep deprivation, having just brought her twin sister home 13 days earlier. I pray I have the strength, but I have a lump in my throat and a tightening fear that things will go wrong.

One of our most dedicated nurses comes in on her day off to say goodbye and good luck. She sees my pale, weary face and says, “You have so much joy ahead of you!”

I was so wound up in my worry, I hadn’t even considered the possibility of joy. Her words completely pull me out of the pit and give me the courage to leave with my daughter.

That nurse ends up being 100 percent right.

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