When eye contact hurts – a personal account of a common autistic trait

--- Joost Wiskerke ---

For most people making eye contact with someone else is natural, effortless and painless.

Now, instead imagine that the other person’s eyes are two piercing laser beams. It probably won’t feel natural to look into them anymore. If you try, it will require effort, and if you do succeed – even for a short moment ­­– it will be painful. You wouldn’t want to experience that, right?

It may surprise you, but the laser beam analogy is actually not far off from how I experience eye contact, most of the time. It wasn’t until a few years ago, when I attended a couple of seminars given by autism researchers, that I learned that many autistic people have similar experiences. That’s why I wanted to write this post for Extraordinary Brains.

(FYI: I don’t have an official diagnosis, but I do strongly identify with several traits commonly associated with autism, including a tendency to avoid eye contact.)

Eye photo cropped.jpg


What I would like other people to understand about me

Many people may never think, or understand, the fact that making eye contact can be a real burden. These are 5 misconceptions that I commonly encounter:

1. I may be looking away, but I’m still there!

This is by far the most common problem. People think I’m not paying attention to a conversation unless I make eye contact. In reality, most of the time, my eye contact and my attention are completely independent from each other. My brain frequently doesn’t even really register what my eyes are seeing during a conversation.

2. I’m not trying to hide anything, and it’s also nothing personal.

When I don’t make eye contact, it doesn’t mean I don’t want the other person to see my eyes. It doesn’t mean that I’m ashamed of myself or that I'm trying to hide something. It also doesn’t mean that I dislike the other person. Guess what… I don’t even make much eye contact with my own wife! However, it can certainly mean I'm not entirely comfortable or that I'm using all my brain capacity for the ongoing conversation (but more on that later).

3. Please don’t judge the book by its covers.

My lack of eye contact may make me look a bit socially inapt and closed off on the outside, but on the inside, I’m a really kind and fun person who is social, intelligent and very loyal. Just ask my friends, colleagues and family :-). I’m convinced that it would be easier for me to meet new people if making eye contact happened more automatically. And I know of at least one concrete example where this type of misunderstanding threatened my academic career (I’ll get back to that topic too).

4. The phrase "You can learn to make eye contact, just practice" is not super-helpful.

Yes, it is true, but in my experience only to some extent. Despite years of training, I still easily forget to make eye contact when I talk to someone. At other times, I may want to make eye contact but fail to do so, or I do it too intensely and end up staring (it's hard to get it right!).

5. Moving your face into my field of view as a cue for eye contact isn’t subtle.

And I usually don’t think it’s that funny. Sure, using body language may be less harsh than straight out telling me. But honestly, when somebody tries to catch my gaze by maneuvering their head around, I usually first get confused, wondering what they're doing with their head. After that, I feel the same embarrassment and frustration that I experience when somebody verbally confronts me with my weakness.

Making eye contact: my perspective

Honestly, making eye contact is a nuisance to me. Calling it my nemesis may even be more appropriate. Despite years of effortful training, I can pretty much still only do it by willfully forcing my brain. And I rarely enjoy it. On the other hand, not making eye contact hurts too. A lot actually. But in a different way. I’ll try and explain myself.

When making eye contact doesn’t come naturally

Feelings of fear and anxiety are definitely part of the equation. In fact, for the longest time I was convinced that my problem was related solely to some form of social anxiety. But more recently I’ve come to think that social anxiety isn’t quite enough to explain my problem. I’ve been insecure about how to make eye contact my entire life, no matter who the other person is. The more I think about why I find it scary, the more I suspect that it has a lot to do with the fact that this particular social behavior just doesn’t come natural to me. It really just doesn’t!

Rather than being a fluent process, eye contact to me goes more like this:

The first crucial step is that I have to actively remind myself to look at someone. Then, as soon as I consider making eye contact, my brain will start ruminating: “Is this a good moment? If it is, for how long should I keep my gaze focused on the other person’s face? Is the other person reciprocating the eye contact? If not, why not?”. And this type of frantic internal questioning will continue non-stop for the entire time that I’m trying to make eye contact (irrespective of whether I succeed or not). It makes the act a real challenge! I can’t tell you how many times I’ve wished my brain would deal better with looking at faces and making eye contact.

Feedback and self-analysis have helped

Earlier in this post I described how feedback from people can be very confrontational. That’s not to say that I never want people to cue me though. It helps me deal better with eye contact. For years, one of my close friends has regularly been pointing out when I’m not making eye contact with her. She does it with a lot of compassion and patience. It has helped a little, just like years of training and analyzing myself have helped a bit.

I’ve also learned some camouflaging strategies. If often look just above or below the other person’s eyes. In group settings, I typically try to focus my gaze mostly on one person. The latter tactic combines particularly well with another oft-used social strategy of mine: Navigating social situations by using a “social wingman/wingwoman” (someone I know is socially more fluent and assertive than me). In spite of the progress, looking at people while talking to them is still not easy for me, and it feels unnatural.

Autism research made me realize why eye contact is exhausting and can even be painful

This brings me back to start of my story when I talked about how autism research has given me new insights about my problems with eye contact. As a scientist, I regularly get the chance to attend seminars about research conducted by others. While working at Rutgers University, two seminars by autism researchers made a particularly strong impression on me. The first talk was about how faces are an incredibly intense sensory input (eyes are probably the biggest contributor here!), and about how this can be a problem for autistic people who can be hypersensitive to sensory input. In the second talk, the speaker mentioned that autistic people often described eye contact as almost being physically painful. Both of these stories resonated with me.

Understanding my own deficits better

I’ve long known that during a conversation it’s much easier and calmer for me to look at stationary objects – floors, walls, ceilings or skies are particularly good for this purpose. Listening to those seminars a couple of years ago made me understand that the reason why eye contact is incredibly exhausting and hugely distracting for me is not just that it doesn’t come naturally, but also that it constitutes a massive sensory input that floods my brain.

Faces – and particularly eyes – have so many visual details and convey so much information! They move a lot too! Add to that my brain’s tendency to get hyper-focused on random details, and its limited capacity for multi-tasking… The problem becomes obvious. After all, the brain has a limited energy supply. Looking at people while they are speaking is one thing. That doesn’t seem to exhaust my brain too much. While talking myself, looking at someone is a lot harder. In a cognitively-intense or emotional conversation, there's virtually no way I can cope with eye contact. The problem gets magnified if the other person is unfamiliar. My brain just doesn’t have the capacity to process it all.


I struggle with eye contact, but I also know it’s a big deal in social communication

I admit that I often have had (and continue to have) thoughts along the lines of “I should just give up, it’s too hard to make eye contact”. Or in my frustration I may think something like “why is it such a big deal [to others] anyway whether I make eye contact or not?! Can I not just be accepted for who I am?” At the same time, I know that acceptance from others doesn’t solve all problems. Body language – including eye contact – is simply too important in social communication.

Making eye contact in my professional life

I think one area where I most often wished for some level of acceptance is at work. As an academic scientist, I sometimes feel hampered by my inability to naturally make eye contact during meetings or while I’m giving a presentation. Unfortunately for me, salesmanship and being good at presenting work are increasingly valued skills in modern-day’s highly competitive scientific community. At least I can compensate my weakness in this area with making strong presentations and knowing my s**t. Compensating is much harder while “networking”, e.g. mingling with other scientists at a social event. Like in most other professional sectors, networking is an integral part of advancing one’s academic career. Here, I feel my limited capacity to make eye contact is a real handicap (the fact that making small talk isn’t really my strong suit doesn’t help either). And this handicap can sometimes have severe consequences.


How a lack of eye contact almost ruined my academic career

Years ago, I was interviewed by a committee for a prestigious program in neuroscience at my university. I had explicitly been asked to apply for the program since I was one of the top students in my year. Job interviews are a nightmare for most people, and even more so for autistic people. This interview definitely felt like a nightmare to me! I couldn’t make eye contact at all and felt horrible throughout it. Afterwards I beat myself up for doing such a poor job. A short while later I found out that one of the professors in the committee was hesitant to accept me into the program because I had come across as socially immature and therefore wouldn’t be a great “poster boy” for the program. I only made it into the program because my mentor convinced the committee to let me give a presentation about the research project I had been doing in his lab. This happened in 2005, but it still hurts that that professor initially judged me for my social skills rather than my academic ones.

Making eye contact can enrich social interactions

In my personal life, I luckily get a lot of acceptance from the people around me. But that doesn’t solve all my problems. I’m fully aware of how useful eye contact can be in social interactions. And powerful! I’ll never forget how I once made an elderly woman cry because I made eye contact with her for the first time during her final session in our psychotherapy group. My eyes told her that I cared about her. I also know that omitting eye contact makes me miss a lot of emotions and subtleties in people’s words. I do think that missing body language can at times be a strength and make conversations easier (at least when the other party communicates in a similar way) – when you rely on verbal communication alone, there is less to misunderstand. Much more often though it makes me miss jokes, or it prevents me from accurately identifying others’ emotional states. I’ll give you another anecdote that nicely illustrates that last point.


If I had looked into her eyes…

Years ago, I completely missed the fact that a girl was in love with me. For months! I had been interacting with her regularly, but just didn’t realize there was anything more to our conversations than them being enjoyable. Until one day, when we walked into each other while I was out for lunch with a friend. When the girl left our table after a couple of minutes, my friend – who didn’t know the girl – said it was super-obvious from the way she had looked at me that she was in love. I didn’t believe it. Surely I would have seen signs of it before, right? Of course, it turned out my friend was right. And although I couldn’t reciprocate the girl’s feelings, my confidence still got a nice boost!

How looking at faces currently helps me understand Swedish

I’ll end this blog post with a completely different advantage of looking at people that I recently discovered. Since moving to Sweden last December, I frequently try to follow conversations in Swedish. Although Swedish is somewhat similar to Dutch (my native language), it isn’t easy for me to understand it. However, I’ve noticed that it really helps to pay attention to people’s bodies, and particularly their faces. Without this added visual information, my brain understands a whole lot less Swedish. Don’t get me wrong though – it’s not like it’s any less stressful or exhausting for me to look at people who speak Swedish. Or that I’ve all of a sudden started making a lot of eye contact in Sweden. As a neuroscientist, I simply think it’s interesting that my brain seems to prefer to avoid looking at faces during conversations in Dutch or English (languages I’m fluent in), whereas it appears to really benefit from the visual input when I try to listen to a foreign language.

The take home message of my long story

Eye contact will probably always remain a struggle for me. In every conversation I’ll have to choose whether or not to engage in it. But I know there’s a lot to gain from moments of successful eye contact, so I’ll keep trying. At the same time, I hope for understanding from other people when I do look away.

© Joost Wiskerke 2018

If we don't want a cure - why study autism?

--- Kajsa Igelström ---

Many autistic adults that we've been in contact with take a very strong standpoint against autism cures or treatments. Extraordinary Brains has been focusing on experiences rather than interventions, but we are interested in the brain too. In this article, I'll tell you why I believe that brain research on autism can revolutionize the lives of many autistic people, in the long term. Not by curing or minimizing autism, but by improving lives in other ways.


The problem with autism cures

By definition, our Internet-based platform limits our interactions to autistic individuals with good verbal abilities and the motivation to reach out and communicate. Thus, a parent with a severely struggling child, or an autistic adult who can't or won't communicate online, may very well wish for a cure, and a number of our own participants do too.

We view everyone with compassion, and I will boldly state that I think that those who want a cure deserve to be heard by researchers too. But it's not my personal goal as a scientist, and Extraordinary Brains will never aim to cure autism.

It is not difficult to understand that the concept of a cure can be upsetting. Autistic individuals continuously have to fight for acceptance, both from others and from deep within themselves. Today's adults were generally diagnosed late, often after many years of suffering. For many, the key to better well-being has been to find self-acceptance, and an important mission of the autistic community is to advocate for the right of autistic people to be just the way they are.

I, too, think that autistic people are intrinsically great (extraordinary in fact...) just as they are - without being cured, or changed, or improved.

I just want everyone to feel better.


The difference between treatments and treatments

This is a point that I would like to emphasize. I'm sure there are some scientists out there who aim to find a treatment for autism in the same way that you find a treatment for cancer: a therapy that somehow takes away the actual autism.

The majority of neuroscientists, however, use the phrase "treatments for autism" without meaning it in a literal way. In the past, I have used these words myself, but to mean "interventions that help autistic people feel better, because they feel like s**t a lot of the time".

Using the phrase "finding treatments" instead of a phrase along the lines "figuring out ways of helping out" may have been a huge mistake made by hundreds of scientists who didn't realize that the literal interpretation of it would cause autistic people all over the world feel less accepted as human beings.

It's critical that the scientific community understands the power of words, and learns to speak the language that autistic people prefer and can identify with.

So when it comes to autism treatments: Extraordinary Brains definitely wants to help, but not by removing or minimizing autism itself. And, as outlined above, I do suspect that a relatively simple semantic misunderstanding underlies some of the controversies surrounding "autism treatments".

Why do neuroscientist want to meet autistic people? 

Autistic people are regularly recruited for scientific studies that focus on psychology or neuroscience. Sometimes these involve giving blood or other samples, sometimes they involve questionnaires or interviews, and sometimes they even involve brain scans. Luckily, real research is always voluntary, but for those who do participate, the concept of being recruited as a "patient" may still trigger that feeling of being overly pathologized and unaccepted.

The main reason for the scientific interest in autism is that many, many autistic people feel terrible. It's extremely common with poor mental health and poor general outcomes (e.g. unemployment). There are severe medical co-morbidities, such as epilepsy, that may be caused by the brain variations that also underlie autism. And the autism spectrum is so insanely broad, and autism is so insanely complicated, that we are far, far from understanding these brain variations.

While it is true that life would be a whole lot easier for autistic people if society could simply accept that they function in a different way, there are some aspects of autism that may not be possible to address in that way.

For example, sensory sensitivities can be so debilitating that it's impossible to live a full life, even in an adapted environment with accepting people. Attentional and executive difficulties can make daily chores so exhausting that there is no energy left for anything else. Certain types of social challenges can cause utter isolation for some people, regardless of the behavior of people around.

So while there is a group of autistic people who could achieve sufficient well-being through social acceptance and accommodations, this really isn't true for everyone.

That's where neuroscience can help. If we can understand the brain basis of, for example, sensory, social, or attention problems, we may be able to develop strategies to target those particular challenges, with great specificity. I myself am #ActuallyAutistic and am thankful for my weird and wonderful brain - but if I could get a treatment that just turned down the sensory volume a notch, I would accept it in a heartbeat. If my sensory sensitivities could be treated, I'd be able to do more neuroscience without perpetually postponing the laundry or crashing from exhaustion after every conference.


Extraordinary Brains

We call this project Extraordinary Brains, because autism, ADHD and other neurodevelopmental conditions do give people a unique mixture of strengths and weaknesses. Your brains are extraordinary in the sense they're amazing but also in the sense that they're out of the ordinary. You may be struggling, because the world isn't always easy to live in and interact with, and you may have neural limitations that stop you from living life to the full.

We want to help minimize your struggles, and preserve all your uniqueness and all your strengths. The Extraordinary Brains Project aims to reach out to as many of you as possible to take part of your views, experiences and opinions, and also start taking baby steps towards understanding the brain well enough to come up with some seriously badass ways of helping out.

We have a long journey ahead of us and we have to work together. Please keep sharing your priorities and opinions – we take them all into account when fine-tuning this young research program and planning our future studies.


First Amazon Turk trial!

We're excited to have run a little pilot study on Amazon Turk (MTurk) and gotten 100 participants in just over an hour, with a good proportion being autistic! 

We are building up towards launching some more quantitative studies and this was our first attempt to invite both non-autistic and autistic people in a venue that isn't specifically for autistic people. 

We're working hard to get some grant funding that would allow us to pay participants for their efforts! Please keep your fingers crossed for the Extraordinary Brains Team :-D We're analyzing data and writing grant applications with much excitement... 

Soon, we'll post a questionnaire about how special interests and "stimming" manifests in autistic women, which is an understudied topic that really needs your input. 

Follow our Facebook page or sign up for invitations if you're interested. Everything is anonymous and confidential and all studies are approved by the ethics board of Princeton University. 

We really can't do it without you, so thanks for all the support, feedback and encouragement! We know we're on the right track.