Self-censorship

Self-censorship

Censorship. It’s a word with many negative connotations, associated with authoritarian states and restriction of freedom. But on an individual level it is something most people practise without even being aware of it. Things left unsaid. It may an attempt to spare somebody hurt; it may be to avoid leaving oneself open to attack for voicing an unpopular opinion.

Sins of omission. Being unwilling to speak out because of the possible consequences. Is this a bad thing? Does it depend on context? Is it acceptable not to tell somebody something because you feel it may hurt their feelings? Is it unacceptable to keep an opinion to oneself because it differs from the majority view? Or is that simply self-preservation?

I’ve been thinking about this recently because I worry that being open and honest in describing how I’m feeling and the difficult times my wife and I are going through might upset or hurt people who care about us. I don’t know the answer to this one. In general I am opposed to censorship and in favour of freedom of speech. But do I have any right to decide to withhold information that could affect other people’s view of me? To offer them an incomplete picture? Doesn’t that equate with dishonesty? I feel uncomfortable if I contemplate offering false information or deliberately omitting details. If the two situations feel the same doesn’t that mean they are the same? I believe they are, at least in my mind.

So I’m left with this conflict between wanting to avoid causing anybody distress and being open. So far I have leaned towards being open. I am aware that this can cause some of my readers to feel sympathetic pain and that is a cause for concern to me. But I believe that to hide the difficult facts and only write about the good times would be misleading. It would give the impression that I live in some ideal, perfect world where nothing bad ever happens. The truth is that like everybody else I face a range of situations, go through highs and lows, triumphs and disasters. I strongly believe that I have to present an accurately balanced account; I try to do so here.

I apologise if anybody has found what I write here to be distressing; that has never been my intention. But that is how life can be at times. Would life’s highs provide such elation were it not for the contrast with the lows?

Empathy and Selfishness

Empathy and Selfishness

I fear I’ve been behaving selfishly recently. I don’t want to make excuses – just try to explain. As I wrote recently, my wife is very ill at the moment and her physical pain, exhaustion and isolation are causing severe depression.

I find that I resonate with how she is feeling. I feel her depression like a deep, black pit; like a hundred hooks in my insides drawing them down into the depths, leaving a void yearning to be filled with anything other than the aching emptiness. I find it very difficult to function in the face of such intense emotion – and I am only feeling it second-hand, picking up the echoes of what my wife is experiencing!

I just don’t know how to handle the situation; these feelings. I don’t know what to do for my wife to help her with her depression. I feel lost. So, selfishly, I have been withdrawing and taking refuge in familiar routines. I’ve been alternately detached and irascible with her instead of being supportive. I know that’s wrong and I want to be supportive – it’s proving to be a big challenge.

My reaction to strong emotions is not at a conscious level – it is sheer gut instinct. Such feelings push the buttons of my primitive fight-or-flight response and my conscious mind has to fight hard against the tide to overcome these basic instincts. It doesn’t always succeed and that is when I overload.

Imagine, if you can, how a pet dog would react to its owners having a row in front of it. The dog can’t understand what is causing the situation but can pick up the emotional overtones and becomes distressed. Perhaps it slinks off, tail between its legs, and cowers in a corner, whining. And over time the dog will become more wary and it will take time and effort to overcome its reluctance to approach, its fear of being in that situation again.

Neurotypical people don’t react like that dog, and so don’t expect that other people would either. But some autistic people don’t have the ability to handle these emotionally-charged situations. We can’t rationalize the causes when we’re experiencing such distress. All we can do is react instinctively. There’s a very good article on this subject on the Autism and Empathy blog.

When I fail to react to somebody in the way that they expect, when I react in a way that appears unfeeling, irrational, selfish – that is often the result of all too much feeling on my part. Feeling – emotion – so strong that I can’t rationally cope with it and my mind regresses to a more primitive mode of operation: instinct, the primitive drive for self-preservation.

Mourning Strangers

Mourning Strangers

Why does the passing of certain people affect me more deeply, while others may depart with scarcely a thought? I’m not talking about deaths of family or friends here, I mean people whom I have never met and know only through their work in whatever field.

What got me thinking about this was reading yesterday of the death of Dennis Ritchie, a major figure in the world of computing. I started wondering why I felt sad on this occasion, while I was emotionally untouched when I heard that Steve Jobs had died. After all, I never met either of them – I never even saw them in the flesh. And I generally have neutral feelings towards strangers – people I don’t know.

Was there something about Dennis Ritchie that created a connection for me? I think so. When you experience works created by somebody, I believe you pick up aspects of their psyche. It might be from reading what they have written, seeing their visual art, using tools that they have created. An author’s voice is preserved in their writing and transmitted by the act of reading those words.

The second programming language I learned was C, created by Dennis Ritchie et al. The canonical reference book for the language, a work I know very well, was co-authored by Ritchie. And through his involvement in the development of the Unix operating system, there are aspects of him reflected in parts of that and derived works. So despite never meeting him, I do feel a degree of connection, of identifying with him – I feel an echo of him from his works and through that there is a sense of familiarity.

I don’t know how it works for other people – I have known people to feel grief on hearing of the death of some “celebrity”. I guess they watch them acting on TV or read about them in magazines and through that feel that they know them. That doesn’t do it for me. But somebody like an author or an artist with whose works I am familiar – then I feel that I have gleaned an insight into their mind from those works and in a small way I have begun to know them. At that point an emotional bond has been made. For me that is a prerequisite for a sympathetic response rather than just an intellectual one.

That is why I cannot mourn a stranger. As long as they remain a stranger I am unable to respond to their situation except in an intellectual way; until I gain some insight into a person they are just another grain of sand on the beach, indistinguishable at a glance from any other. I’m not saying that I have no feelings towards people in general – I treat them with respect and compassion. But I don’t have any curiosity about their lives; I don’t lose any sleep worrying over them.

When I see reports of some natural disaster on the news I recognise intellectually that it is a difficult, frightening situation for the people involved in it and feel a desire to help on the basis of our shared humanity. But I am unable to grieve for their dead: I did not know them. The images do not directly cause me emotional pain. I can reason about how it might feel to be involved in such a situation – it is an intellectual exercise. I need to analyse their situation, find parallels from my own experiences and consider how I felt in those circumstances to consciously develop an empathic response. But I have found that mourning – grief – is far beyond this in terms of intensity. I can feel sadness or regret  for a stranger but I can only mourn those I have a strong enough bond with.

Caring

Caring

When this is all over and the dust has settled I am most likely going to come down with a bang.

My wife suffered serious complications after a minor operation Tuesday. Her blood pressure dropped to dangerous levels at one point and it was only the timely intervention of the doctors at the local hospital that saved her. She came home the next day but is still very ill and in pain.

She has to rely on me to care for her. It’s not easy for either of us – she has always been a very independent woman and asking for help does not come easily. I suspect I am misreading some of her signals: I see the anger at the surface when I should realise that her fear and pain is causing it. It’s difficult for me to be sufficiently detached to properly analyze her state of mind – to properly empathize requires that I, paradoxically, first have to distance myself so I can be objective.

I feel so helpless: there’s nothing I can do to take away her pain, to make her better. It will just take time. All I can do is try to make sure she’s got everything she needs to hand and all the household jobs get done. I’m not very good at it – left to my own devices I struggle to look after myself, never mind anybody else. I don’t feel as if I’m doing enough – I think that I’m just reacting to situations that arise rather than being proactive and forestalling them. I just think that I ought to be doing more but I don’t know what more I could do.

I keep noticing the symptoms of an impending shutdown – I get frustrated and tired more quickly and I feel the urge to disconnect, to get away from everything for a while and go for a long walk by myself. But I won’t let myself do that right now – I can’t allow myself that luxury until she is stronger. It takes its toll on me: it is physically very demanding. I feel constant tension across my shoulders and down my back, caused by the stress of the situation. Once she recovers sufficiently I can take the time out I need to recover. But until then I must carry on doing the best I can.

Walking In My Shoes

Walking In My Shoes

I just read a post, On Sensory Empathy by Rachel Cohen-Rottenberg, that got me thinking: do people in general only consider the emotional aspect when they talk about empathy?

I believe that inferring another person’s emotional state based on what they say and how they act is the easy part – even I can do it to a certain extent. What is difficult is experiencing sensory stimuli as another person experiences them. When I listen to somebody speak I see a wonderfully rich progression of images – to a large extent my understanding of language is wired through the visual part of my brain. It’s difficult to describe because it’s not like watching video with the volume switched off – the images may be fleeting or they may persist, they may combine and evolve, they may be concrete or abstract. The images are the meaning to me – rather than going from sounds to words-and-phrases to meaning I go from sounds to word-and-phrase-images to meaning. How can somebody who experiences language in what I would consider to be a less rich manner ever properly understand – empathise with – my sensory experience?

And how could they understand the physical discomfort and pain that some stimuli can cause unless they can find some analogue, some equivalent within the realm of their own experience. I can tell people that I can’t stand to hear a certain sound, breaking glass for instance. They don’t know why I can’t stand it, how it feels for me to hear that sound. How it is physically painful because it overloads my senses – it is too intense. Note that I’m not saying too loud or too high-pitched – it’s too bright, like a sudden flash of direct sunlight into my eyes. Try to imagine seeing and hearing a bottle smash on the ground in front of you and – at the same time – it reflecting a flash of the full brightness of the midday sun into your eyes. You physically feel the force of it hit you like a wave. That is approximately how the sound feels. That is what I mean when I talk about it overloading my senses.

Can somebody who is not a visual thinker appreciate how I think about things? Can they develop a model – a theory – of my mind without having any experience of how it really works? I will admit that it is conceivable – after all I can imagine thought without pictures. I imagine it must be something like being blind. Other faculties would have to compensate. I have read that someone who is blind can still experience images in their mind, so I could reasonably expect them to be able to imagine having sight. But I wouldn’t expect it to be easy or necessarily accurate. In a similar way I do not expect non-visual people to be good at imagining what the world looks, feels and even sounds like to me.

I view neurotypical people in a more understanding way now that I realise this. I recognise that they often have talents in areas where I have trouble, especially when interacting with the average person in the street. They seem to be able to intuitively read other NT people’s emotions. But with me, and other people on the autistic spectrum, they seem a bit lost – a bit mind-blind. They don’t often react to us as if they properly understand what we are thinking or feeling – they have trouble with empathy. They don’t spot the signs when we are having trouble with sensory overstimulation and sometimes even add to the overload. But humans don’t come with a user’s manual to explain all this. I feel that it’s everybody’s responsibility to be open to the idea that there are people out there who experience the world in a different way: to be patient, understanding and to make allowances.

Expressing Sympathy

Expressing Sympathy

How do you tell somebody that you sympathise with them; that you understand what they are going through and just want to do or say something that will help them cope with it and – hopefully – help them feel better?

I have a deep aversion to any reliance on trite stock phrases: “I’m sorry”, “Chin up” and all that. They always strike me as insincere and demonstrative of a lack of thought. I like to try to cast my words in an original way – to make my message personal and unique to the person and situation. And that can create problems for me because I need time to compose my response. It’s so much easier in writing but that doesn’t help at all when you’re face to face with somebody who is telling you how they feel. Dealing with emotional content in conversation requires a lot of effort at any time. So I struggle, end up muttering “Sorry” – if I can say anything at all – and feel bad for not managing to come out with what I wanted to say and falling into the trap of cliché.

Still, I’m as bad on the receiving end. I say “Thank you”. Then I start thinking that that’s not enough – I think it sounds like it’s just an automatic response, without any thought. I worry that the person will think I’m ungrateful or insincere. So I want to expand on it but I can’t easily think of appropriate words on the fly – I end up feeling frustrated with myself on top of whatever it was in the first place! Not the other person’s fault – it’s pressure I put myself under.

It would be so much easier if I didn’t feel when people I care about are troubled – when they are feeling sad or hurt. Most of the time I don’t know what to do to “fix” the problem and that hurts me because I think I’m letting them down. And I can’t say all this to them at the time – I can’t tell them how I feel about their situation. I could write it here but that’s clearly not the same. Are a few muttered stock words like “I’m sorry” backed by my full conviction better than another person’s empty words of reassurance uttered in tones of sincerity? I don’t know. Perhaps the end result is more important than the intent, at least to the listener.

All I can really do is tell them that I care about their situation and I want to help if possible. Would it work if I just said that? Or does it sound like a politician’s response to some disaster? When I run the words through in my mind there’s no emotional inflection – it’s like a string of syllables without any semantic aspect – sounds without meaning, empty. I’m saying what I mean and even I am unconvinced, so how could I convince a person I’m speaking to that I am sincere? Writing is a much more comfortable medium in which to express myself.

Can I Feel Empathy?

Can I Feel Empathy?

What is empathy?

What do we really mean when we use the word? I know what I mean but does somebody else understand it in the same way? There is a lot of on-going discussion about whether autistic people can have empathy and I am wondering whether everybody is working from the same definition.

Simon Baron-Cohen defined empathy in his 2003 book The Essential Difference: The Truth About the Male and Female Brain: “Empathy is about spontaneously and naturally tuning into the other person’s thoughts and feelings […]”. He goes on to describe cognitive and affective empathy: “the cognitive component: understanding the other’s feelings and the ability to take their perspective” and “the affective component. This is an observer’s appropriate emotional response to another person’s emotional state.”

Frans de Waal defined it this way in his 2008 paper Putting the Altruism Back Into Altruism: The Evolution of Empathy: “The capacity to (a) be affected by and share the emotional state of another, (b) assess the reasons for the other’s state, and (c) identify with the other, adopting his or her perspective. […] the term ’empathy’ […] applies even if only criterion (a) is met”.

These appear very similar to me. So how can it be that primate social behaviourist Frans de Waal can conclude that there exists a spectrum of empathy, saying “I’ve argued that many of what philosophers call moral sentiments can be seen in other species. In chimpanzees and other animals, you see examples of sympathy, empathy, reciprocity, a willingness to follow social rules”, while clinical psychologist Simon Baron-Cohen can describe autistic people as having “zero degrees of empathy” (although this is at odds with his comment “I have met many adults with Asperger Syndrome who can display their excellent empathy […] when there is less time pressure creating demands to respond in real time”)?

I find myself unable to see why there should be any requirement for an empathic response to happen “in real time”. This seems to imply that there is an unwritten component in the definition of empathy that differs depending on who is using the term – at which point we are in Humpty Dumpty territory: “When I use a word it means what I choose it to mean. Neither more nor less.” Now I am well aware that language is an imprecise tool, and that the meaning the author intended is not always the one interpreted by the reader. But the subject of autism and empathy is such an emotive one for so many of us on the spectrum that I believe greater transparency is essential.

And so to my question that started this essay: can I feel empathy? I score low on the EQ (Empathy Quotient) test – around the mean for people with AS. But what does this test actually measure? Is my interpretation of the questions the meaning the author intended? For example, “21. It is hard for me to see why some things upset people so much.” – I have to agree with this because it was hard for me to see why someone ended up in tears because of some trivial event. With the incident I am thinking of, it was hard for a lot of neurotypical people to see as well. But would they interpret that statement in a more general sense? For me, one example is enough to make the statement true.

And then there’s “32. Seeing people cry doesn’t really upset me.” That’s absolutely, literally correct – it doesn’t. Knowing that people are upset does upset me, but not just seeing them cry. I need more context – there must be more than the isolated fact of them crying to indicate to me that they are upset. Chopping onions makes my wife cry – it doesn’t mean that she’s upset, or that it would upset me.

Is there something about the literal way that AS people interpret language that skews the results of this type of test? Remember that it was written by neurotypical researchers looking to demonstrate differences between NT and AS minds. You will have to pardon my scepticism but while I have to agree that there is a statistical correlation between EQ scores and autism, I am not convinced that a causal link has been demonstrated. I am not satisfied that the hypothesis that autistic people have low empathy is correct. I need to be convinced that social and communication factors have been adequately considered as alternative explanations.

Finally, in answer to the question, yes – I can feel empathy. It doesn’t matter how I arrive at that empathy, or how long it might take me to get there. No, it’s not intuitive to me. No, it’s not particularly rapid. But that doesn’t matter – those aren’t defining characteristics of empathy. I do get affected by and share the emotional state of other people, particularly those whom I know well. Sometimes it’s because they simply tell me how they feel – does it matter whether they communicate their feelings verbally or non-verbally? The end result for me is the same. Like they say, if it walks like a duck and quacks like a duck… it’s a duck!

Learning to be More Understanding

Learning to be More Understanding

Over the past few months my relationship with a certain other person, whom I shall refer to as W, has been up and down so much that visualising the turns it has taken is enough to make me sea-sick. At the heart of the problem is difficulty in communication: W is neurotypical while I have Aspergers Syndrome.

When W is suffering with health problems or depression she will talk about it at great length in a highly emotionally-charged way and her language will become much more figurative and abstract than normal. I find this combination particularly difficult to handle. Because I know her so well I have learned to interpret the emotional cues in her voice – when she is feeling so tired and frustrated and even angry at her illnesses this comes through to me in her voice and mannerisms. I find the strong emotions very difficult to cope with and tend to shut down.

It appears that this response is not very helpful to W – how could I have known? My own reaction to pain – physical or mental – is usually to keep it all inside. I become more withdrawn – even though I might be yearning for some comfort, for a hug that will make me feel safe and less anxious. But in that state I can’t express how I feel or what I need to help me deal with it.

So it turns out that what I need at times like this is almost exactly what W needs too. And now we’ve figured it out. I know it sounds simple, almost trivial, but between my inability to speak about my feelings and my literal misinterpretation of W’s descriptions of her feelings – when I haven’t just shut down from the emotional overload – we’ve been failing to communicate. Which has been causing far too much unnecessary stress on both sides.

I’m not saying that we’ve completely resolved the problems – time will tell on that score. But we have reached a new level of understanding. I know it sounds contradictory but I’m learning to be more supportive by taking less notice of W – I have to partially block her out so that I avoid overloading and shutting down. So that I can continue to function and respond. Which all helps her deal with what she’s going through and in turn helps me.

Yes, it would probably have been easier for both of us to have ended the relationship rather than work hard at discovering problems and trying to fix them. But what seems easy in the short term often turns out not to be the best option in the longer term. We both feel that there is enough value in our relationship to make the effort of repairing it worthwhile, because when it’s working it is so strong and strengthens both of us.