When I went to the Louisiana Center for the Blind, there were two other young adult students who had the same eye condition as me: Leber’s Congenital Amaurosis or LCA. The three of us became friends, and would joke about being part of an exclusive “club.”
During one of our class discussions, one of the guys with LCA mentioned that he used to press on his eyes when he was a baby. This caught my attention. Eye pressing (also known as eye poking or, in clinical terms, the oculo-digital reflex) involves pressing one’s fingers, knuckles or fist against one’s eye. It’s a common topic of discussion among parents of blind babies and children, particularly those with LCA and related retinal conditions. Appearing early in infancy, eye pressing may be one of the first hints that a baby is blind, as it was in my own case.
After my friend mentioned eye pressing, another student mumbled something like “Hey, I bet he still presses on his eyes.” My friend got quiet, and the subject was quickly changed.
Later I told my friend that I admired his courage for mentioning eye pressing in the class. All too often, blind children grow up internalizing shame about their eye pressing. The behavior alarms and vexes sighted parents, who don’t understand it, and they worry that their children’s eyes will be irreparably damaged, or that the pressing will make their child look more “blind.” Sometimes even the most well-meaning, gentle attempts to break us of the habit can teach us that there is something wrong with us. And, at least, many of us wouldn’t publicly admit to doing it.
My friend’s response was to say, “You know, sometimes when I get really tired, I still do it.” I admitted I hadn’t completely broken the habit either. Then he chuckled and added, “And I’ll bet you anything that [third friend] does it too. But he would never ever admit it.”
For many (though not all) people with certain retinal conditions, eye pressing is a lifelong habit, though we can learn to control it over time. I am told I started pressing before I was 6 months old. As an adult I can control it fairly well in public or when my hands are occupied. I still catch myself and move my hand away from my eye about a dozen times a day on a typical day.
I get so many questions from parents about eye pressing that I want to share some information here about what it is, why we do it, what the consequences are (and aren’t), and how parents and their children can address it in a balanced way. My primary goal here is to take the stigma out of eye pressing, and to offer some insider information based on my own experience and that of others shared with me over the years.
Q: Why do people press on their eyes? It looks painful!
A: Some people think that we press on our eyes to stimulate vision. While that may work for sighted people with intact retinas, I have yet to hear from any blind person who reports seeing lights, colors or other desired visual effects from eye pressing. The most common explanation I hear (which matches my own experience) is that pressure on the eyes simply feels good. Some people have learned to get the same sensation of eye pressing from pressing on their eyebrows, the bridge of their nose, or squinting their eyes tightly shut. Many of us who eye-press also have involuntary eye movements (nystagmus) as part of our eye condition, so I have wondered if eye pressing may simply be a way of settling our eyes down.
Eye pressing is often lumped in with other self-stimulatory behaviors or “stims” like rocking or hand flapping. However, unlike these other stims, eye pressing tends to be a “low-arousal” activity. Nap time or car seat time are prime pressing times for many babies and toddlers. I sometimes press in my sleep, and often when I am awake but tired, or lost in thought. Although anxiety can also be a trigger, this may simply be a sign of lapsing self-control under stress.
Q: Will my child develop permanent damage from eye pressing?
A: This question is hard to answer definitively, because people who eye-press also have lifelong eye diseases. So, when a person develops changes to their eye shape or complications like glaucoma, it is impossible to tell if the problem is caused by the underlying eye disease, eye pressing, or both. It is difficult to find comparison groups of people with the exact same eye physiology who do vs. don’t have a history of eye pressing.
Certainly, some children who eye-press develop sunken eyes, keratoconus (a change in corneal shape over time), or eye infections. Others have none of these issues. It is not clear how much of this is caused by eye pressing itself, but reducing the frequency of eye pressing will reduce the odds of causing lasting eye changes. Any effects are cumulative, so occasional pressing is safer than constantly doing it.
I developed keratoconus as a teen and now am prone to dry eyes. When I have been pressing for a long time, my eye becomes a little sore and irritated. This is my main incentive to curtail the habit in my adult life.
Q: How do I get my child to stop eye-pressing?
A: To unpack this question, let’s consider the nature of the eye-pressing habit, the reasons why controlling it may be desirable, and some ways to balance a desire for control with the need to respect the person’s neurology.
Eye-pressing has been described as a reflex. It appears very early in life, and as such, is an innate habit. That said, it is controllable. Many people report that once they become aware of the habit, they are able to control it to varying extents. However, for most of us, it takes some effort to control, hence why we may press more when we are tired, ill or stressed. Some people can extinguish it completely, usually by working hard and often getting intensive support at first from another person to make them aware of the habit.
Controlling the frequency of eye-pressing may help promote eye health. There is also the social aspect, that sighted people don’t press on their eyes, and so the behavior can create a negative social impression on others.
I do think it is a good idea to make children aware of the negative aspects of eye pressing, in age-appropriate ways. This awareness will help equip them to develop self-control as they get older. For very young children, keeping their hands engaged or using glasses as a barrier can reduce the frequency, but probably won’t extinguish it completely. (Remember naptime). For older children, It is possible to explain in a matter-of-fact, nonshaming way that eye-pressing looks off-putting to sighted people and could change the shape of their eyes over time.
Some parents and educators swear by behavior modification strategies to stop kids from eye-pressing. Common strategies include using code words to alert a child that they are pressing, or developing rewards for periods of control. Such strategies do work, but only up to a point, because they rely on adult intervention. When an adult isn’t monitoring their behavior, a child can simply go back to eye-pressing. To have meaningful control, the person needs to self-monitor in the absence of external cues. Usually, this happens when someone decides they want to reduce or stop their eye-pressing because they want to, not because an authority figure is “making” them stop.
Generally, I advise parents to try reminders or rewards as a way of promoting self-awareness, in a way that fits their family style and their child’s personality. But, parents must also understand that the underlying urge to eye-press doesn’t go away, and that realistically, their child may continue to eye-press at least occasionally. It is important not to restrain, punish, or shame a child for eye-pressing. Unfortunately, I have heard of children having their hands restrained, or being made to write essays on eye-pressing as a means of punishment. Such strategies are not only harmful, but they fail to address the reflexive nature of the behavior. Rather, children can accept that eye-pressing is part of their neurology, and still learn to control it when doing so is advantageous for them.
7 thoughts on “Blind in the City: Some Straight Talk About Eye Pressing”
Great information! My 4 yr old son is blind he has Norries Disease as well as my brother and one of my cousins. All 3 of them stim by flapping their hands which my brother (38 yrs old) and cousin (mid 40’s) have been able to control in their older age. My son seems to stim when he is either excited or bored. He will flap his hands and go round and round in circles as fast as he can. Makes me dizzy haha. Anyways every blind person is different of course and there are so many different eye diseases . I learn something new everyday. Thank you for your blog it was very interesting to me as a parent of a blind child. I would love to read more of some of your experiences.
Excellent summation. You are a fabulous writer
Excellent article. I love that your philosophy is a holistic one — an understanding that considers the reason(s) why it may be an impulse, and offers parents, therapists, teachers, and individuals a logical, self-directed personal-choice method for addressing it.
Hi. I wanted to say, as someone who is legally blind and in my mid-twenties, I have struggled with this all my life so it’s relieving to me that others my age do as well. People seem to think it’s something we can just stop but it’s in a way comfortable for me and I’ve found myself now at least doing it a lot at home. I’ve gotten really good at not pressing my eyes in public, sometimes if I’m in the bathroom I will a little but I try to keep control of that as much as i can. My parents always actually still say, and my brothers as well no eyes when I press my eyes, and also my mom asks me how are your eyeballs? lol she’s odd I feel like, and she says it really loudly for some reason I’ve found much of the time. and I feel like most people don’t really understand it. I will move a little when I talk, especially if I’m in a swivvel chair or if I’m standing which the second one I think is normal for everyone. sometimes I will rock a little back and forth, but I have thank god learned to make it so suttle people don’t notice it most of the time, and I don’t do it very much anyway because it does seem weird. I’ll sometimes move my hands a little, but it’s not flapping, it’s more of an Italian thing I’ve seen my mom move her hands around a ton when she’s talking so sometimes, I do catch myself doing that a little and I’ve been able to stop that as well, better than the moving my body a little when I’m in a chair or whatever. Anyway, I’m glad to see this blog up here, and I look forward to hopefully reading more of your writing. Thank you!
Thanks for this. I don’t have retinal problems, but have nystagmus. I’ve been trying to figure out why I always eye-pressed. I managed to curtail it myself due to eye surgeries where the pressing became painful. While I have the urge to do it now, I’ve had a cornea transplant (underlying progressive cornea problems I had as a newborn), and am afraid that pressing would harm the donor cornea. That said, on occasion, especially when I’m tired, I still catch myself doing it.
When I was a kid, no one stopped me. No one said anything. I’m not sure if I was just that inconspicuous or if literally no one cared. So I’m lucky I never had the shaming or anything like it. It ended up being “natural” things that generally broke me of it.
Thank you, thank you. This is a constant struggle and a fine line to walk w my daughter. Your insight is priceless!