I have had that comment made to me on several occasions following a blog post I’ve published, or in response to a comment I have made on someone else’s blog, and many more time in face to face contact. This always amazes me because they seem to feel something I don’t. I’ve often wondered why they make such a claim. Is it because they wish to indicate empathy? If so, why not simply tell of a similar personal experience? Or is it because in my telling of the story, you do, in some way, sense something that makes you feel some sort of pain – as if it had actually happened to you?
At one time I used to think that “I feel your pain” was just a meaningless expression used by people to indicate that they have been listening, but have no intention of making a practical response. But in the years since I discovered I’m autistic I’ve learnt that many people do actually experience some kind of emotional pain that they perceive others have experienced, even if the other person hasn’t. Perhaps a better way of explaining it is that they feel an emotional pain that they would experience if the situation relayed in the retelling had occurred to them.
In telling a story about a situation that would have been better had it not happened, that is exactly what I am telling – an event/situation that should not have happened. As far as I’m aware knowing that something should not have happened does not mean that somehow I should experience some sort of emotional pain. It’s not about me personally, it’s about wrongness of the event/situation. It shapes my ethics and morality and is shaped by my ethics and morality.
I’m going to ramble just a little more before I get to the point. Architects and others involved in the design of social gathering places such as shopping malls, pedestrian precincts, and theatres design them to attract people. And on the whole that is precisely what they do. But some people – many autistics for example – are hypersensitive to the sights, sounds and activity that occurs in such places. Instead of being desirable places they become disorientating places of pain and discomfort, triggering our fight, flight or freeze instinct. And yet when we describe what we experience in such locations, the typical response is to dismiss it as if we’re simply imagining or exaggerating what we experience – it’s not actually real.
Occasionally I will open up to others about how I experience aspects of the world around us differently from them, exposing a vulnerability that another might perceive as a weakness. Often others will express sympathy and indicate that they understand, but usually they don’t. A typical example might be after I explain how unpleasant a shopping mall can be they express something like “I hear ya. They’re noisy places aren’t they?” and then in the next breath, invite me to join them for lunch or coffee in a shopping mall food court so that they can learn more about autism! When I protest that I have just explained how such places are so unpleasant and I’d prefer to eat somewhere else where there’s less noise, commotion, and harsh lighting they respond by suggesting I simply relax, ignore the surroundings and enjoy the food. And besides it’s not really that noisy and bright anyway!
The avoiding of eye and physical contact
My whānau is of the hugging kind, and like to hug when we meet and greet, and when we say our goodbyes. I however, do not, and instinctively tense up whenever I’m embraced. It’s unpleasant and I’ll attempt to escape as quickly as I can. Most, if not all of my family are aware that I dislike hugging, but nevertheless, every time we meet I am hugged by each and every family member! Even though it might be more brief and less intimate than with others in the whānau, it is still very unpleasant. They might as well whack me over the head with a sand filled sock. I don’t think it would feel any worse. And then it’s supposed to be repeated when we eventually go our separate ways!
I have only ever once spoken publicly about being autistic, during which I explained why I find eye contact, hugs and handshakes so unpleasant. It was an impromptu, unplanned occasion and I managed to stumble my way through around ten minutes of describing my experiences. After I had spoken, several people came up to me to say they gained a new insight into how autism affects people and then attempted to shake my hand. Usually when someone wishes to shake my hand I comply as attempts to avoid a handshake are invariably misconstrued as some form of hostility. However, as I had only moments before explained why I find a handshake was so unpleasant, I felt I was justified in making it clear I did not want to do it by deliberately putting my hand behind my back when they presented their hand. For one person there was clearly a light-bulb moment, and they apologised for their thoughtlessness. Although I’m poor at reading facial expressions and body language, it was rather obvious that another was offended by the withdrawal of my hand, and as she left in a huff I heard her say comment to her friend “How rude! Are all autistic sufferers like that?” and her friend saying “Yeah, they don’t care about being rude. They can’t empathise – they’re only interested in themselves”.
The reason? I can only suppose that it’s not possible for neurotypical people to put themselves into a uniquely autistic situation. Were the circumstances or situation is somewhat similar to what they have experienced previously, most people seem to be able the empathise with my experience and then project their emotional response that they feel onto me. But when a uniquely autistic experience is explained to them, they cannot empathise and dismiss my experience as inconsequential.
Here’s the rub: every time I interact with someone it must be on neurotypical terms. It’s all well and good to say I should be more assertive or to stand up for myself, but doing so is almost always counter productive. As in the example of the woman and her friend above, even when it’s known that the reason I do some things or avoid some things is because I’m autistic, there is still an assumption that it’s an anti-social choice on my part because autistic people are anti-social and/or only interested in themselves and don’t really care about the feelings of others. And if the other party is unaware that I’m autistic, an assertive stance on my part is invariably perceived as hostility, a personal insult, or worse, deserving of an “appropriate” counter response. Sometimes that includes violence.
In the first paragraph above, I wrote “If so, why not simply tell of a similar personal experience?” This is what I and many autistic people do to show our empathy. It’s in the sharing that we demonstrate our empathy. It’s usually misinterpreted by non-autistics as being an attempt to draw attention to oneself, of being self-centred. Be honest, was that what you thought when you read that sentence for the first time? Perhaps It might be better to pretend I empathise emotionally by lying – to say “I feel your pain” even though I don’t. But like most lies, it will eventually be found out, and I don’t know of anyone who doesn’t feel hurt and/or betrayed when they discover they have been lied to.
Another Spectrum 
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