Like many, perhaps most autistic people, I am suspicious of a lot of the work and research that Simon Baron Cohen is involved with, however sometimes he hits the nail right on the head. I recently watched a 2012 TEDx presentation by Cohen and he made some comments regarding empathy and democracy that are surely relevant today. Let me quote starting from 10:35:
10:35 “Empathy is vital for a healthy democracy; it ensures that when we listen to different perspectives, we hear other people’s emotions and we also feel them. Indeed without empathy, democracy would not be possible.”
11:46 “Empathy is our most valuable natural resource for conflict resolution. We could wait for our political leaders to use empathy – and that would be refreshing – but actually we could all use our empathy.”
If I was asked for one word to describe what is lacking in American society and politics at this time, I think I would choose the word empathy.
Trigger warning: <sarcasm> this article may irritate some people who lack empathy. </sarcasm>
Today in the comments section of a post of one of my favourite bloggers was a comment by one reader that they were irritated by trigger warnings that occasionally precede online articles. The reader made the comment that “[E]verybody needs to put on their big boy/big girl panties and deal with it“. This to me seems to be very inconsiderate, lacking in empathy, and downright harmful. It triggered prompted me into composing this article. Let me elaborate.
Personally, I approve of trigger warnings. They are not there for the benefit of the typical reader/viewer. They are there for the benefit the reader/viewer whose circumstances are less than typical.
Many people struggle with life for a variety of reasons, beit temporary, medium term or for their entire life. Some people will, from time to time encounter that proverbial straw that breaks the camel’s back causing anguish, despair, a breakdown, a relapse, or even contemplating whether or not life is worth the struggle. I cannot know the circumstances of my readers so I shouldn’t presume that none of them are facing difficulties that are stretching them to breaking point. I would not want to be knowingly responsible for loading them up with that proverbial straw, at least without giving them the opportunity to decline it. I’ll attempt an analogy.
Imagine you come across a cafe you haven’t seen before and decide to go in for a Flat White (or whatever your favourite hot beverage is). You’re about to take your first sip when there’s an extremely loud bang that startles you and you spill some coffee onto your lap. After you recover you notice no one else in the cafe has reacted as you did. It turns out this particular cafe fires a cannon on the hour throughout the business day, and regulars are aware of this. On the other hand you weren’t. If you had been warned before purchasing your coffee, you would have been forewarned and could have chosen whether to stay or go elsewhere.
Which would be more reasonable: (a) to provide a warning at the entrance, or on the drinks menu on the wall that a cannon is fired on the hour, or (b) to be told that you need to put on your big boy/big girl panties and deal with it when you complain that the cannon fire caused you to spill your coffee?
What triggers me about comments such as “deal with it” is that it’s a situation I find myself in regularly. I’m autistic and my ability to communicate in a way that non-autistics demand is not always successful. I can communicate perfectly well – with other autistics or with people who are prepared to meet me part way. Communication is a two way street, yet I, and other autistics, must bend over backwards to conform to the confusing, chaotic and illogical communication style of non-autistic people. All. The. Time.
It’s uncomfortable, unpleasant and exhausting, and frequently in social situations I find it necessary to escape, at least temporarily, to avoid shutting down. Such escapes are often considered rude, anti-social, inconsiderate or arrogant, and when I explain why it’s necessary I’m informed that no one else has a problem and I need to learn to “deal with it”. Why is it that they don’t ever need to learn to “deal with it” – the fact that I need to take frequent breaks during social activity?
Seldom, if ever, is there an attempt by neurotypicals to make any accommodation for the needs of autistics. Who’s lacking empathy? According to popular mythology, including much of the medical profession, autistic people lack empathy. I would argue no more so than non-autistic people do. In fact there is a growing body of evidence that suggests autistics may actually be highly empathetic, but expressed in a way non-autistic people can’t even recognise, let alone understand.
When needs are not met, people suffer. If you are irritated when empathetic people try to accommodate the needs of others by way of trigger warnings, you’ll not get any sympathy from me.
While most of my readers have been living under various forms of covid-19 restrictions for upwards of eighteen months, for us Kiwis in Aotearoa New Zealand, and especially outside of Auckland it is a novel experience. Social distancing and masks have not been everyday parts of our lives until around 2 months ago when the delta variant finally succeeded in breaching our border security measures and is proving impossible to eradicate, unlike previous variants.
Mask wearing is now mandatory for people aged 12 and over when taking public transport or visiting businesses, and recommended when away from one’s home or “social bubble”. Personally, apart from yet being unable to find a means to avoid the fogging of my glasses, I find my stress level definitely rises to the point where it can’t be ignored after about 30 minutes of continuous mask wearing, and I need to remove it, even if only for a minute, to restore myself to something resembling normalcy. I can usually achieve that by retiring to the car or finding an out of the way park seat or equivalent where the mask can be briefly removed in safety.
However, that’s not the most serious downside to mask wearing. I have always had impaired hearing. I was diagnosed as having 70%-90% hearing loss when I was around 7 or 8. Normally I can get by reasonably well, and when a word or two can’t be clearly recognised, I can usually deduce it by context. It’s only just in the past week that it has really dawned on me how reliant I am on lip reading as an essential component of my ability to understand the spoken word.
I’ve recently had several occasions where it has been necessary to converse with a shop assistant while making a purchase. In one case it was a quiet environment but I was unable to recognise even half the words spoken by the assistant. Often I was unable to understand even the gist of what he said. By the end of the transaction I suspect he was just as frustrated as I was about the slow progress of our conversation. I found the entire process embarrassing and somewhat humiliating.
Later in the week, I visited a somewhat noiser shop where I had gone to pick up some items I had bought and paid for online. Sure I could have had them delivered, but the delivery would have cost more than the products. I’m not a penny pincher, but we do have a fixed and somewhat limited budget to live on. In theory I should have been in and out of the shop inside of a minute, but it was not to be. It didn’t help that the online instructions for collecting online purchases were incorrect for the local branch. In fact it may have been less confusing if there had been no instructions at all.
After waiting at the counter under a sign reading “Collect online purchases here” and seemingly being ignored, I sought out a shop assistant and explained why I was there. To cut a long story short, it took over half an hour to collect my purchase and only then because I finally resorted to seeking yes or no replies or asking them to point or make a specific gesture order for them to communicate with me. At no time did it occur to them to initiate non-spoken communication. I found I had to give specific instructions. Even when I discovered that where I was waiting for my pickup is no longer applicable, and then asking where I should go, no one thought to point in the appropriate direction until I specifically asked them to point with their arm/hand/finger in which direction I should go.
I’m not sure what sort of privileged lives the young people working in that shop have “endured”, but it was apparent to me that they wouldn’t understand the irony of directing a wheelchair bound person to take the stairs to a different floor or instructing a blind person to read a sign painted on the wall. I would have thought that people with disabilities are encountered often enough that most non-disabled folk would have some level of understanding or empathy. Apparently not.
Come to think of it, while I don’t consider being autistic as being disabled, some of the hyposensitivities and hypersensitivities that result from being autistic can be made disabling by a lack of empathy, and sometimes by antagonism in the 99% of the population who are neurotypical. So in hindsight I really shouldn’t be surprised by the lack of understanding or empathy I have received over the past week or so due to no longer being able to augment spoken conversation by lip reading.
Perhaps I am on more common ground with neurotypicals when it come to reading facial expressions of those who are masked. I’ve heard and read many complaints about how much more likely it is to misunderstand someone or be misunderstood when masks cover so much of the face. I’ve queried a few acquaintances about this, and they tell me that it does reduce the amount of non-verbal communication they receive. The amount of perceived loss seems to vary considerably. When pressed, it’s varied from “some” to “heaps” (a lot).
Most people don’t think about how much body language and facial expressions contribute to spoken communication until it’s brought to their attention or they find it missing from others or they realise their own intentions are not always fully understood. The necessity to wear masks is bringing the significance of non-verbal forms of communication to the attention of some of the more socially aware folk.
My own (admittedly very anecdotal) investigation suggests that people rely on the eyes as much, if not more, than other facial expressions. So while a mask can reduce the amount of non-verbal information received, it doesn’t eliminate it. If anyone has tried the Mind in the eye test, they will realise how much most people can read from looking at the eyes alone. So spare a moment to consider the situation I now find myself in.
I do very poorly when reading facial expressions. I can recognise a few basic facial expressions, but if I rely solely on the eyes I’m lost. The average for adults taking the Mind in the eye test is 26 out of a possible score of 36, but varies from 17 to 35. Women average slightly higher than men. For autistics, the average is 22. I’ve tried the test many times, and the best I have ever done is 17 out of the possible score of 36. Typically I hover around the score that might result from random selection – a one in four chance of getting the correct answer for any given question – 9 out of 36. In other words, I haven’t a clue how to read eyes.
It is becoming clear to me that what emotions I can read from the face depend almost entirely on the mouth and now that they are effectively hidden behind masks, I am blind to emotions being expressed unless someone describes their emotion(s) in words. I’m really not sure how I can effectively remedy the the losses I now realise I am faced with, as I don’t see the likelihood of masks being done away with for some considerable time, if at all.
I’ve spent seventy years learning how to limit social faux pas, and more importantly, how to recognise them when they occur so that I can take remedial action. I can foresee that mask wearing will set me back decades. Perhaps it’s time I seriously thought about becoming a hermit as a full time occupation.
This afternoon I spent some time on the phone while three “experts” from Spark (my telephone & Internet provider) tried to “help” me solve a “problem” with my Internet connection.
I usually enjoy these “sessions” and try to string along those providing the “assistance” for as long as possible. My aim it to make their “support call” stretch out to more than an hour, but today I only achieved 43 minutes. My reasoning is that while they’re trying to scam me, they can’t scam someone else.
Today I chose to put the phone onto speaker so that I would could have both hands free to undertake other activities while frustrating the hell out of the callers. This was the first time I’ve done that. And it was my undoing.
The wife, who is much less tolerant or sensitive towards people who she believes is in the wrong, today showed a more sensitive streak.
In most interactions with others, I tend to be as courteous and polite as possible, and the wife frequently chastises me for not being more aggressive or confrontational in cases of disagreement. Usually she has little regard to the sensitivity of others when it comes to achieving her goals. She can be ruthless. I know. I have witnessed her in action for nearly 50 years. My ways are much more gentle and yet I’m not convinced she’s any more successful than I am.
I must admit that I find it difficult to read emotion at the best of times no matter how hard I try, but when it comes to dealing with people such as this “help desk” trio, I honestly have absolutely no interest whatsoever. And when it comes to dealing with scammers such as these, I’m grateful for having this autism characteristic.
I had switched the phone to speaker at about fifteen minutes into the call and the wife was able to listen in on the conversation. At first she seemed amused, but when I glanced up at about the 30 minute mark, her grin had gone and something which I have learnt to be associated with concern was showing. Concern for what or who I couldn’t decipher.
However, at about 40 minutes I could tell that the wife was clearly upset and I assumed it was because I was wasting time and hadn’t completed a task for her that I had started moments before the phone rang. At that point I let the the trio know that I knew they were scammers. Of course they tried to bluster their way out and threatened to suspend Spark’s services to me. On my suggestion that they do so, they hung up.
It was only then that I discovered why the wife was upset and distressed, and that was because of how I was winding up the trio According to the wife, they were very frustrated and the woman caller was almost in tears. This was a surprise to me as I’ve seldom witnessed her being sensitive to the feelings of others in times of conflict, and never when she considers the other to be in the wrong.
She’s brought up the subject of how upset the woman was on several occasions over the rest of the afternoon and into the evening, and I can only assume that she was sensitive to their emotions because she was not directly involved – she was an observer and not a participant. Whatever the reason, it is a new and surprising revelation to me. Even after all this time she can still surprise me.
Lesson learnt. Next time (and that’s bound to happen again before the year is out), I won’t enable the speakerphone.
Today would have been my mother’s 100th birthday if she had not passed away in February 2017.
I’m reminded of the occasion because the wife showed me a Facebook posting by my sister (the wife has a Facebook account, I don’t, but that’s a story for another day). Otherwise the occasion would have gone unnoticed by me.
The wife mentions that she misses Mum, but it’s not a feeling I share. Not because I have any negative thoughts towards her, in fact I can’t think of anything negative to say about my mother, and I’m still very fond of her. But that’s where it ends. I feel the same about her now as I did four years ago, when she was a 96 year old bundle of energy. Her passing hasn’t changed that.
I have been told that it’s unhealthy not to have a sense of loss when losing someone close, but I have no idea what a sense of loss is supposed to feel like, but then I find it difficult to identify most emotions within myself. I’m more empathetic to emotions in others than in myself if they are emotions related to sadness or distress or joy, but otherwise I’m virtually blind to emotions in others as well as myself.
Alexithymia is characterized by difficulties in identifying, describing, and processing one’s own feelings, often marked by a lack of understanding of the feelings of others, and difficulty distinguishing between feelings and the bodily sensations of emotional arousal. It’s more common than most people realise
Around 10% of men and 2% of women have alexithymia to some degree. It’s also often associated with PTSD. Research indicates that between 50% and 85% of autistics have alexithymia. Whether it a characteristic of autism or a comorbid condition is open to debate, but it’s definitely a condition that many of us on the autism spectrum share.
Don’t get me wrong, it’s not that I’m devoid of emotion. I suspect I’m just as emotional at the next person, but I’m not able to differentiate one emotion from another, especially when it comes to feelings. On the other hand I have come to recognise the physical manifestations associated with some emotions. For example, I recognise that I clench my fists and clench my jaws in situations where unfairness or injustice arises. I presume these are physical responses of anger?
Do I miss Mum? Not that I’m aware of. Should I? I Haven’t a clue, And for me it does not matter.
Edit: For anyone who knows the actual date of my mother’s passing, and wondering why it’s being published on the wrong day, all I’ll say is I’m a slow writer.
That dear readers, is a question I’m unable to answer. At (almost) 68 years of age, I still don’t have a clue when it’s my turn to speak. And it’s not for the want of trying.
I often get it wrong even in one on one conversations, but if I’m in a group of two or more other people I’m like a fish out of water when it come to practising conversational turn taking.
It appears to me that conversations consist of one person leading and others following, adding variable length interjections from time to time (the nature and frequency of which varies from culture to culture), and then by some mysterious mechanism the lead is transferred to another member of the group.
To a person like me, the ability of others to smoothly navigate a conversation is more than an art or skill. It has the appearance of the participants having some sort of ESP or supernatural ability that is used to negotiate who says what, and when. In fact there was a period in my childhood when I was convinced this was true, which goes a long way to explain my brief fascination of the paranormal at that time.
I’m sure there’s a discipline of science that studies the mechanism by which people negotiate conversations, but the average person seems to have no idea how they do it. Believe me, I’ve asked. Typical responses are “I’ve never thought about it” (so I gather), “It comes naturally” (no it doesn’t), “It’s instinctive” (no it’s not), “what a stupid question!” (why?), “everyone can do it” (really? I can’t)), “just take your turn” (when is it my turn?), “just observe and you’ll learn” (I’ve been observing for more than 60 years, so how about a hint or clue?).
It was only eight years ago that I learnt there is an explanation for the reason I find conversation so difficult: I discovered I am on the autism spectrum. However being armed with the knowledge why I fail to recognise non-verbal clues (a skill most people don’t realise they possess), does little to help me. If I concentrate exclusively on another’s body movements or tone of voice, I can maybe recognise something that possibly might be non-verbal clues. However, it’s a moot point as the concentration required means the words spoken have gone in one ear and out the other and I’m unable to relate what might have been expressed non-verbally with what the person has said.
When I first learnt I was on the spectrum, my only “knowledge” of autism was through the film Rain Man. I wanted to prove I wasn’t autistic, and tried many online tests in an attempt to prove the experts wrong. I failed totally. One test I tried (on many occasions) is the Reading the Mind in the Eyes test. This test measures one’s ability to identify emotions in others by looking at an area around the eyes and without any other input.
The test consists of looking at a total of 36 pairs of eyes and choosing one of four emotions to match the image. The mean score is roughly 27/36 for women, 25/36 for men and 22/36 for people who have been identified as having Asperger Syndrome or “High Functioning” Autism. I’ve tried this test on numerous occasions, and the very best I have achieved is 16/36. However most of my results have been close been between 10 and 13, which is only marginally better than one would expect from a tossing a dice to choose an emotion.
So the next time someone appears to be rude by interrupting inappropriately, just consider the possibility that they might struggling, almost to the point of exhaustion, of trying to fit in and having no idea why they don’t. They struggle to fit into your world almost every moment they are awake. It won’t hurt you to try to fit into their world sometimes.
Another Spectrum 