For the healthcare providers: About that #autistic lack of eye contact business…

Just because I’m not making eye contact, doesn’t mean I’m not listening, or not attending. I AM!

This post is for doctors and other healthcare providers who may interpret lack of eye contact as a sign of disorder or pathology. Here’s some information that might help you better understand.

I’m sure there are plenty of people out there who don’t make eye contact because they are:

• lying / exaggerating / hiding something
• dealing with a health condition that prevents it
• ashamed
• nervous / intimidated
• disrespectful / distrustful

In my case, however, the reasons are very different. See, I’m autistic. I have a lot going on with me. And eye contact is not the simple practice that many non-autistic folks seem to think it is.

First off, let’s talk about the purpose of eye contact — ostensibly it’s to establish a connection with another person and “read” their intentions and meanings as you’re talking with them. It helps establish deeper rapport between speaker and listener, and it offers a wealth of unspoken information about whether or not you can believe or trust what the other person is saying.

Personally, I don’t like to make eye contact with others. It’s not because I’m hiding anything, that I don’t like them, or  that I distrust or disrespect them. That’s not it at all. As a matter of fact, the more I like or trust or respect someone – the more invested I am in our dynamic/relationship – the less inclined I am to make constant eye contact.

Let’s break it all down, based on the premise of the purpose:

• Eye contact lets you establish a connection with another person: I’m unusual, in the sense that I sense connections with others, without them needing to do or say anything. Call me ultra-empathic. Lots of autistic people (especially women) feel an intense connection with others around them, and “pick up” on emotions and states of mind just by default. So, eye contact isn’t necessary to for us to connect with others. If anything, it can confuse the situation, because quite frankly, a lot of people exude emotions and states of mind that don’t at all mirror the looks in their eyes. It feels like they’re trying to trick me — which they sometimes are — and if I make a lot of eye contact, I end up spending way too much time trying to figure out what’s really going on, than if I “tune in” to what the other person seems like, using my empathy. The less I look at you, the more I can process the non-verbal clues and cues that are the bread-and-butter of my cognition. Take it as a compliment that I’m not looking at you – not a dismissal or insult.
• Eye contact helps you read others’ intentions: As I said above, non-autistic people’s presentation often doesn’t mirror how they seem or “feel” to me. Eye contact seems to be used to establish dominance hierarchies, which I usually find contrived and counter-intuitive. Even in the case of doctor-patient relationships, I don’t relate to the hierarchical dynamics, since I tend to know more than the average human about how my own body works, and what signals have meant what, over the course of my life. I don’t mean to be disrespectful or non-compliant, but rather logical and informed and responsible for my own health and well-being. And when interacting with doctors, who often seem to need me to relate to them in a subordinate way that makes no logical sense to me, eye contact can really throw me off. Because I sense that I’m failing in the interaction. Yet again. Utter, total fail.
• Eye contact helps determine meanings as you’re talking with someone: Sorry, this use of eye contact doesn’t work for me. As I mentioned, non-autistic people seldom mean precisely what they say. There’s all sort of substrate of implied meaning beneath non-autistic communication which seems like a lot of extra work, with very little payoff. Alternatively, people could simply say what they mean and not be so insecure about it all. Again, eye contact with someone who is saying one thing, but clearly in a different “space” emotionally or mentally, is about the worst and most confounding thing I can imagine. Even if the provider I’m dealing with has the best of intentions, it seems that they’re so conditioned to say one thing and mean another, that it’s a lost cause to cue off their eyes for any indication of what the heck is going on. It’s much, much easier for me to listen carefully (sometimes with my eyes closed), and A) derive meaning in that way, B) visualize what’s being said, and C) collect my thoughts to formulate a cogent response. If I have to figure out what your eyes are saying and then square them with the rest of you, that leaves me no energy or resources for responding appropriately — which won’t help you in doing your work. It’s just going to muddy the waters between us, and you probably won’t feel like you understand me at all. Because “I” won’t be there — just a shadow of a reaction to the “you” you’re presenting.
• Eye contact helps establish deeper rapport between speaker and listener: I am a highly visual thinker. I conceptualize in pictures, as well as sensations. A doctor-patient relationship is a life-and-death matter for me, and I need to really use my abilities to their fullest — which often means averting (or covering) my eyes and letting my amazing brain work in the way it does best. If I am making eye contact, I can’t use my visual thinking, and that shreds any hope of you (or anyone else) establishing rapport with me. If I can’t see my thoughts in my mind (when my eyes are busy decoding another person’s expression), I almost can’t think. Ironically, autistic people may have a deeper rapport with others, than those others are able to muster. We often cue off the sense of another person — if they’re nervous, angry, anxious, impatient, trying their best to do a good job. Please don’t get insecure or nervous. I (and many other autistic folks) can clearly sense what’s going on with you, even if you can’t. It’s like we have x-ray vision into your soul. Again, don’t be nervous. You’re not nearly as awful as you think you are. We still love you.  Probably more than you love yourselves.

The problem is, that sort of rapport tends to be inherently “lop-sided”. We may be highly attuned to you and your state of mind/spirit, but the circumstances of the doctor’s office surrounding us are chipping away at our ability to be fully present, ourselves. Sensory issues get worse with stress, and the life-and-death-seeming urgency of the doctor-patient dynamic heightens my sensitivity to those god-awful overhead fluorescent lights, the intrusive odors of medical supplies, the echoes and reverberation of instruments on an examination table, and the uncomfortable feel of a scratchy “johnny” that’s open in the back and is distracting me with cold air blowing between my shoulder blades and feels like it’s chilling my vertebral protuberances, one bone at a time.  So, while you’re trying to interact with me and get a sense of how I am (and who I am), I’m so distracted, shut down. and in sesnory defense mode, just trying to not screw up again, that you’ll probably never get a clear view into who I am, what matters to me, or how best to help me stay well and whole in an unaccommodating world. Of course, you’ll never realize this, because I’m well practiced at presenting as a “regular” person, who’s just a little bit scattered. It’s a defense/survival mechanism that only works a little bit. But it’s usually all I have.

• Eye contact offers a wealth of unspoken information about whether or not you can believe or trust what the other person is saying: For all the reasons above, it can be difficult, if not impossible, for you to read my intentions based on eye contact. I’ve been accused of malingering, exaggerating, concocting maladies to get attention from a paternal authority figure, as well as over-reacting. I’ve been under regular care for chronic pain, which was never alleviated by any of the meds I was given. I’ve been put through so many tests — MRIs, EEGs, ultrasounds, blood draws, etc — and yet I’ve spent most of my life in some sort of pain and distress that was never actually understood or addressed. Given that I’ve been not only accused of so much bad behavior, I’ve become conditioned to expect it — though I’ve never gotten used to it. At the same time, I’ve rarely gotten the help I needed (the one doctor who actually helped me, died a year ago, and I’m not sure I’ll ever find another who can understand or help me). So I come to the doctor-patient interaction feeling like a total failure, to begin with. And I’m not entirely sure I even deserve to be taken care of. Nobody seems to understand the nature of my situation — my sensory issues, my thinking style, my intentions — let alone accept it as just how and who I am. The don’t seem to think it’s necessary to even try. So, why would I think that I matter? Or that I am entitled to the kind of care that others just take for granted?

I apologize if I’m bumming you out. It is a bummer. Fortunately, you probably don’t have to live like this, so that’s a plus. For me, it’s just how it is. And I address this all as best I can. But I don’t have much hope of the kind of interactive success that others just take for granted. Doctors don’t seem to receive the kind of training that helps them “get” patients like me.

So, we end up at odds… In no small part due to the eye contact issue.

This can all be fixed, however. One doctor at a time. One intention at a time. One small action of kindness and generosity at a time.

Just not jumping to conclusions about my intentions, when I don’t make eye contact… that would be a start.

We can work from there.