Aspergers Blues

It's hard to write about depression. The symptoms keep getting in the way of my words, and for somebody who loves words as I do that is disheartening.

Where to start? Well, I've been suffering bouts of depression for years. It can last for a few hours or several days but it is not usually an unrelenting pit of despair. I have spells when I'm feeling, if not exactly "up" then at least neutral. But then I'm back down again.

These days I don't become inclined to harm myself, although in the past I've cut myself and taken handfuls of pills (my body didn't go along with the plan and I just vomited). Instead I usually seek solitude, which can be easier said than done.

I want to cry but my eyes remain stubbornly dry. I want to curl up in a dark corner and hide from the world. I want to be left alone and I want somebody to just hold me and make me feel safe and protected. I get so tense that I feel as if my muscles are locked in place, yet I have so little energy that I can't bring myself to stir. I detest the sensations, feeling a lack of sensation. It's a complex, contradictory, utterly confusing state of mind.

It's getting to the point where I'm reluctant to relax and enjoy myself because I know that sooner or later I'll come crashing down again, and the shock of the contrast is like jumping into a cold plunge pool from a sauna. I'm forever waiting, anticipating and expecting the next low point.

Of course there are triggers. Rocky patches in relationships. Anything that causes stress and exhausts me leaves me vulnerable. It's a common aspect of Aspergers that we have limited physical and mental resources: we tire easily, and that state of exhaustion means that problems quickly become overwhelming.

What can be done about it? The obvious answer would be to avoid becoming so worn out - I might even say burned out - that I can barely function let alone stave off the blues. My particular problem lately is that as the sole carer for my wife, who's not in good health, I have no respite. There's no break from it, even if my strong sense of duty and responsibility would allow it.

I missed a couple days of work last week because the depression hit again after becoming exhausted dealing with my wife, who is also feeling great frustration and low spirits because of illness. It doesn't help that I pick up the echoes of her feelings - who says Aspies don't have empathy? - but I don't have the mechanisms to cope with these reflected emotions.

In fact, the night before I had spent two hours or so in the company of a friend and left feeling happy... until I got home and returned to the stressful overload. I'm not coping well at all lately: it's all getting to be too much of a strain but I'm stubborn as an old mule and I won't give in until my mind and body call an involuntary time out. Unfortunately that's exactly what happened and a week later I'm still not really over it, still depressed.

There are no silver bullets. There is nobody who can wave a magic wand and fix the problems. Miracles don't happen (even if, like my wife, you have strong religious beliefs). I don't believe there is any higher purpose to suffering: adversity doesn't make you strong. It just grinds you down until you haven't the strength to even lift your head from the dirt.

The funny thing is that now I'm back at work I can get focused on the job and function normally on the whole, although I'm feeling more tired than usual and it's taking me longer to get ready in the mornings - I'm not moving so quick. A case of special interest to the rescue, possibly.

Time flows like molasses in winter;
I am caught in its viscous embrace.
Struggling to break free
As a fly in a web,
Waiting for the poisonous attack.

I am a cornered mouse,
Teeth and claws no threat
To the predator stalking me.
The black cat, Nemesis,
Will not be driven off.

To fight an invincible foe,
To cast the die, burn the bridge
And cross the Rubicon; a dream
Wherein I cast off the fetters
And rise, Prometheus unbound.

Saying No

Saying "No" doesn't come naturally to me. Whenever people come up to me and ask me to help them in some way my instinctive response is to go along with whatever they want. I actually feel anxious even thinking about refusing their requests - I worry that refusing will lead to argument or confrontation.

So I end up doing things for others - not that I mind most of the time - but it takes time and energy that I ought to be spending doing other things. It can be a problem for me at work when I get people coming up to me or phoning me to ask for technical assistance when I am in the middle of some other piece of work: I end up taking longer to complete my tasks because I'm spending time on unrelated issues. I even raised it as a problem at my recent annual performance review.

One of the biggest problems with interruptions at work is that it can take me out of a flow state which then means I spend fifteen minutes or so trying to get back into it. Just four interruptions over the course of a day can lose me about an hour of productive working time.

I guess that invariably saying "Yes" to people actually makes things worse for me because it encourages them to ask for favors more often. In contrast I very rarely ask anybody to do things for me - I feel uncomfortable imposing on them.

I need to learn how to say "No" without causing myself stress as I fret about the possible consequences. Experience tells me that a simple, blank refusal doesn't work in most instances - particularly in a social situation. The person will just repeat the request, often with some attempt at emotional coercion - a deliberate attempt to engage my sympathy. And it works - I then feel that I would be letting them down by continuing to turn them down, which upsets me. It could be labelled emotional blackmail. I consider it a particularly devious, underhand means to get one's own way, but it seems to be a depressingly common tactic.

Some people have suggested that I invent some prior commitment that would preclude my assistance at that time; however that would mean lying which makes me even more uncomfortable so it's not a viable option. If only people would take a simple "No" as an answer and drop the matter there and then instead of arguing about it and trying to change my mind. I really need to find some stress-free way to refuse, because otherwise I will just continue to take the (for me) easy way out and assent to their wishes.

Not Guilty

Just when you think you're getting the hang of acting "normal" something happens to bring you back to reality with a bang. I got wrongly accused of doing something bad the other day - the details don't matter. It was something I would never dream of doing; nevertheless I stood accused of it.

I reacted naturally, which is to say I failed to make eye contact, I displayed "inappropriate" facial expressions such as smiling, I didn't respond immediately. All this was taken to be a display of guilt by my (neurotypical) accuser. What can you do in such a situation? The more I protested my innocence the more I was told that I was "acting guilty".

I'm an honest person: I feel too uncomfortable to contemplate lying. Besides which, I find it hard enough to remember the details of what did happen, never mind trying to remember some invented scenario. Being accused like that and then not being believed - having my response taken to be evidence of deceit - was deeply hurtful.

My accuser in this case was somebody who prides themselves on being a good judge of character, on having great empathy. But there was no sign of any of that when dealing with me. Their instinctive reading of non-verbal cues led them totally astray when faced with somebody on the autistic spectrum. I'm led to believe that this subconscious empathy as displayed by most neurotypical people relies on the person being observed also being neurotypical and reacting in a "normal" way. They can't read the signals correctly if there is any deviation from this - their unconscious assumptions fail to hold true. The trouble is that with the assumptions being unconscious, there is no realisation that they even exist.

It's been said before elsewhere, but neurotypical people lack empathy when dealing with autistic people. They don't often notice when we feel anxious or threatened, they misinterpret our feelings based on our behaviour. They seem to have an off-the-peg, one-size-fits-all model of human behaviour, while I (I can't speak for other people on the spectrum) build a bespoke model for everyone I know.

Generalizations don't work with outliers - it's true of all statistical models. And in statistical terms, people on the autistic spectrum do fall outside the normal range when it comes to behavioural traits. That's "normal" as in an average across a population. I'm quite aware that I have some areas where I fall within normal bounds; others, especially relating to social skills, where I'm well outside.

I strongly resent my natural reactions to an accusation being taken as signs of guilt or evasion. I don't think I should have to conform to neurotypical standards of communication to be believed. Where was the vaunted empathy of this person in my case? I'd call it a spectacular failure. Did they end up enlightened? No. I just got a dismissive "you're weird". They weren't willing to take the time to analyze and understand me - time that autistic people have to take if they want to interact more fully with neurotypical people. I don't think I'm wrong to feel angry about this.

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

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

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

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

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

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?

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

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.

Theory of Mind?!

Theory of Mind
Treated Unkind
Not of Mankind
Empathic Blind
Hurting Behind
Aspergers Kind

Word Association

Empathy
 —Sympathy
  —Affinity
   —Resemblance
    —Likeness
     —Image
      —Appearance
       —Pretence
        —Deception
         —Illusion
          —Fantasy

If This Is Empathy I Don't Want To Play Any More

The petty games that people play,
A product of their playground minds.
Who's going to be "it" today?
What target will the bullies find?

Behind your back they put you down
And to your face are nice as pie
The knives are out so gather round:
You mustn't miss the latest lie.

It's "Did you know what this one said?"
And "Isn't that one so two-faced?"
Hypocrisy: "Wish she was dead!"
Then she turns up to be embraced.

With double-standards hoisted high,
Their friendliness is but a fake.
They wouldn't care were you to die
As long as they were at your wake.

Their games are cruel; You've had enough
Of finding knives thrust in your back.
You don't know why they act so tough
Perhaps to hide the heart they lack?

They put you down, these NT folk,
They may not mean to but they do.
'Cause "Aspie empathy's a joke!
Perceived emotion's not for you."

Because we can't say how we feel
They just assume we don't: they're blind
To how they've ground us under heel.
Show me their Theory of our Minds.

Rights Manifesto

I just read a post by Rachel Cohen-Rottenburg, The Empathy Issue Is a Human Rights Issue, and it got me thinking about the rights I take for granted.

The first right I list below, "to be identified and treated as a member of the human race", is a direct reaction to some of the quotations in Rachel's post - statements she has found in certain academic papers on the subject of autism and empathy. These quotations indicate that a significant number of researchers - some at the top of their fields in psychology and neuroscience - are denying autistic people their humanity based on perceptions of limited or absent empathy. I take great offence at the implications of this - I feel strongly that this is a dangerous direction to be heading in: once you start thinking of a group as non-human the next step is to treat them as non-human, without human dignity and rights.

If anybody reading this feels that this seems a small point to be taking issue with, may I remind them that, historically, labelling a group as inferior has been a prelude to their exploitation (enslaving black Africans) or persecution (denial of freedom to women to this day in parts of the world). I will speak out against such malicious, pernicious misrepresentation because I believe we are all human with all the worth and dignity that entails. There are some people who would twist and restrict their definition of human to divide their world into "people like me" and "people different from me" - with the latter group being summarily cast out from the human race. Here's a thought for you: would you feel it was more offensive if instead of autistic people it was black, Jewish, disabled, terminally ill or English people that were being called non-human?

So, having said my piece on that subject, here's my take on the rights I claim, and what I will give in return.

• I have the right to be identified and treated as a member of the human race.
• I have the right to express myself in whatever way is most natural for me to the extent that it does not breach the rights of any other person.
• I have the right to hold my own opinions and beliefs and not have them imposed on me by others.
• I have the right to be free from intolerance, intimidation, exploitation, persecution and abuse.
• I have the right to feel safe and free from anxiety, and the right to seek a place of safety if I feel threatened.
• I have the right to be different without interference or being told that there is something "wrong" with the way I am.
• I have the right to expect understanding from other people.
• I have the right to make mistakes without incurring any disproportionate penalties.
• I have the right to be left alone in peace when I need to shut down.
• I have the right to choose who I associate with, and who I do not associate with.
• I have the right to ask for help when I need it, and the right to refuse help when I do not.
• I have the right to live, or the right to die should I choose to.

I don't believe that rights are automatically inalienable or that they exist in isolation; instead I believe that to expect one's own rights to be respected, one must respect the rights of others. To that end I submit the following undertakings.

• I will take responsibility for my own actions.
• I will treat other people as I would expect to be treated myself: with understanding and compassion.
• I will be tolerant of other people and will not intimidate, persecute, exploit or abuse them.
• I will allow other people to express themselves and to act in whatever way they see fit as long as they do not infringe upon my rights or the rights of others.
• I will not force my own beliefs and opinions on other people.
• I will offer help to those in need and refrain from interference in the affairs of those who want to be left alone.
• I will accept that everybody is different and that this does not affect their worth as human beings.
• I will dissociate myself from those who breach my rights or the rights of others, and will not tolerate them as long as they cause harm.
• I will judge others based on how they treat myself and others, and not on how they might differ from me.
• I will endeavour to correct any mistakes I make.
• I will accept that nobody is infallible and forgive accidental mistakes by others.
• I will accept restriction of my rights should I fail to fulfil my responsibilities.

Worst of Times; Best of Times

The last few days have been a time of striking contrast. I have plumbed the cold, dark depths of sadness and soared high on bright waves of euphoria. Both Friday and Saturday nights were very low points - it was so difficult just to carry on. I don't know how I'd have got through without the distraction of work - for those hours I could just do the job and not think about my problems. But outside of work I had nothing to occupy my mind - no persona to adopt, no mask to hide behind. And so I felt the full impact of my negative feelings.

There were a number of reasons for my unhappiness - being in situations I did not want to be in and feeling trapped, picking up strong negative feelings from somebody close to me and being unable to handle the empathic pain, shutting down in public and attracting unwanted attention when I just needed to be left in peace - it all combined into a destructive overload where I was fighting against myself to avoid a meltdown, to avoid lashing out. I was sleeping badly, not eating well and - although I didn't realise it - becoming physically and mentally exhausted. Even watching my team (Wigan Warriors) win the Rugby League Challenge Cup on Saturday afternoon didn't affect my mood to any great degree.

Sunday didn't start well. However I had a busy shift that afternoon at the pub - the time flew by and I got a buzz from it. I also had some supportive feedback from the couple of "down" posts I'd published the previous nights which lifted me. So I was feeling somewhat better by the evening and, even better, relations with this person I'm very close to were considerably less frosty - this is somebody I love very much but we have communication issues from time to time when she gets very openly emotional and I overload and become uncommunicative. I know it doesn't help the situation but it's the only way I can handle the emotion I feel as a result.

But anyway, there were signs that things were getting back on track so that helped. And that evening I had organised an event in the pub - a darts and quiz night. It's a measure of how comfortable I feel in that environment that I felt able to put myself forward for such an event - organising and hosting something lasting two and a half hours. I had ten teams of two competing and I was nervous as anything starting out even though I knew all the people taking part. I managed to round them all up, explain how it was going to work and get things started. After three rounds of questions I was feeling under pressure and took a short break. My legs were shaking and - I found out later - I was exhibiting a couple of tics that my wife could easily identify as signs of my nerves. I was wondering what the heck I had got myself into - why I had put myself in this situation. I felt it might be slipping out of my control. I hadn't been able to plan the event in detail because I'd not known how many entrants there would be on the night - I was out of my comfort zone and - to a degree - making it up as I went along.

It was about ten minutes later that I got things going again with the next round. The break had calmed me enough and I felt I was getting on top of things - I felt that it was running more smoothly. Nobody had complained yet - in fact a couple had told me it was going well, and that gave me a bit more confidence. By the time we finished two people had made speeches thanking me and called for a round of applause as appreciation for an enjoyable night. Everybody there told me they had had a good time and that I had done a good job of running it. I felt pleased - but more than that I was utterly exhausted. I slept well - over ten hours - and it was Monday morning when I was feeling more refreshed that it sank in and the elation hit me. I found myself flapping my hands in the shower! I feel a real sense of achievement for carrying the evening off successfully, and I know that even a year ago I would never have been able to stand up and speak in front of a group like that - let alone direct the proceedings.

I'm not in any hurry to repeat the experience - it was nerve-wracking and exhausting - but I feel proud of myself for doing a difficult job competently and managing to handle my anxiety. Thanks are also due to the people who took part on that night and were so supportive towards me - I couldn't have got through it without certain people telling me early on that I was doing well and giving me a well-needed confidence boost.

Comfortably Numb

I first heard The Wall when I was 16. I'd already got a copy of Dark Side of the Moon and had spent many an hour lying in my darkened bedroom - door closed, eyes shut - just listening to it from start to finish. There's something in particular about Pink Floyd that resonates with me - I can lose myself in the music, becoming totally involved. The sensations - visual, spatial, tactile - conjured up in my mind complement the sound wonderfully.

The Wall connects on another level though - it's one of the few works where I find many of the lyrics have meaning for me. The second track is The Thin Ice:

"If you should go skating
On the thin ice of modern life
[...]
Don't be surprised when a crack in the ice
Appears under your feet
You slip out of your depth and out of your mind
With your fear flowing out behind you
As you claw the thin ice"

This speaks to me of the superficiality of society - how fragile the social structures are that I rely on to support me, and how that support can disintegrate leading me to a breakdown, overwhelmed by my own fears, desperate for help.

The recurrent themes of the album are alienation, fear, desperately seeking connection with others, rejection, bullying and abuse leading to depression and mental overload - meltdown/breakdown, withdrawal and isolation. I can identify with all of these.

But the track that I feel the greatest affinity for is Comfortably Numb. It begins with a doctor approaching the protagonist: "Hello/Is there anybody in there?" - I'm in shutdown brought on by an emotional overload. I can see and hear what's going on around me - what people are saying to me - but I can't respond.

"[...] I can ease your pain [...] Can you show me where it hurts?" is the misinterpretation of my state by people around me. They intrude, disturbing me and I try to shut them out - to create a barrier in my mind and block them. "There is no pain you are receding [...] You are only coming through in waves/Your lips move but I can't hear what you're saying" - I'm succeeding in blocking them - filtering them out of my sensory inputs.

"I can't explain/You would not understand/This is not how I am." This is my inability to express how I'm feeling. The fact that even if I could describe how I feel, it would be so removed from your own experiences that you could not empathise with me. The dichotomy between my calm, unemotional exterior and my inner turmoil that causes you to misinterpret my feelings.

The song's perspective switches back to the doctor: "OK/Just a little pin-prick [...] I do believe it's working [...] Come on it's time to go." This is people trying to change me, to force me to conform and behave in a "normal" fashion - a sometimes painful experience.

The song concludes: "When I was a child/I caught a fleeting glimpse/Out of the corner of my eye/I turned to look but it was gone/I cannot put my finger on it now/The child is grown/The dream is gone." The illusions that I had in childhood have been dispelled - I can't even clearly recall the innocent naivete of those days. It can be a hard, cold world and it makes no allowances for those who are different - who have difficulty coping.

"I have become comfortably numb." If I don't open up - if I keep myself to myself and don't get close to anybody, I can minimise my chances of being hurt. I can try to keep a lid on my emotions, I can try to stay uninvolved. I can try to make myself numb - not to care - so that I won't feel the intensity of emotions, so I won't feel such pain - so I'll be comfortable. I'll be able to function in the world at large but it will be at the expense of losing an important part of myself.

"Comfortably numb" - it's dangerously attractive, a great temptation to be numb and never feel fear, pain, anger. But such a cost. Never to feel happiness, love, excitement. And that would be a cost far too high for me to bear. So I will suffer the bad times, the depths of depression and the agonising pain in the knowledge that when the good times come round again it will be on a wave of exaltation. The contrast - the ups and downs, highs and lows - the sheer emotional rollercoaster is part of what makes us human and alive, and to abandon or deny that would be to diminish ourselves; it would be a living death.

Mental Models

Back in the early nineties when I was at Cambridge University I went to a talk given by Douglas Adams (of The Hitchhiker's Guide to the Galaxy fame). The talk was primarily about technology but in his usual style he went off at a tangent on several occasions. One thing that he talked about has stuck in my mind to this day. He got onto the subject of virtual reality and simulation and strayed into the realms of psychology when he began to describe the parallels between computer simulations and mental models and how we use them to forecast future events.

What he had done was to give a name to a phenomenon I was intimately acquainted with. I remember it so well because I recognised an aspect of myself - I realised that I build mental models of people I interact with, refining the model as I become more familiar with a person. You can think of a model as a series of chains of cause and effect - if I do this then they will do that. I use that model to run through what I plan to say to them and how I plan to say it, and try to predict how they will react. This is all on a conscious level for me - there's little or no instinctive component. That's not to say it's necessarily a slow process but it does introduce some delays into my social interactions while I think about the next move.

I've recently been thinking more about this, prompted by discussion of Theory of Mind - among other things - over on Journeys with Autism. There is a school of thought in psychology that considers people on the autistic spectrum lack a theory of mind (ToM); that is to say that they lack an awareness of others' thoughts and feelings. I believe that my mental models are my ToM as I understand the concept. I also believe that my deficiencies in this area are primarily caused by my poor social skills: I don't have the tools to actively experiment with people and thus refine my model so I just rely on passive observation. This naturally takes much longer to achieve comparable results when compared to somebody who is comfortable and adept in social interactions.

I've watched my wife when she starts talking to somebody that she has never met before. First she will observe them for a short time, somehow picking up non-verbal cues and forming an initial impression of the person in her mind. She will then approach them and start a conversation based on what she has observed. It appears to me that this initial conversation is a social tool that enables her to "get to know" the person quickly by gauging their reactions to her probing - something like a handshaking protocol in network communications. A little while later she'll introduce me to them. I just respond neutrally to what they say - I start out very warily in social interactions because I have no mental model for this new person yet and no way of knowing how they will react to me - and probably get thought of as quiet and boring. I'm primarily observing them at this point, noticing how they respond to my wife and constructing a brand new mental model of them. This imposes quite a cognitive load on me and I can't really cope with inventing something to say at the same time.

I have no idea how most people appear to handle this kind of thing so easily - it just seems to come naturally, instinctively, to them rather than being a learned skill as it is for me. It means that it takes me a long time to get to know somebody reasonably well - well enough to feel comfortable around them. I don't form attachments easily or quickly. However I have found that my hand-crafted mental models can end up being more accurate than my wife's intuition at predicting some people's behaviour. Does this mean that I have a more complete theory of mind than my neurotypical wife? Is it like the difference between bespoke and off-the-peg? Or is it just more evidence that all theories and models have limitations and will depart from reality at some point because they seek to simplify and generalise in order to provide some insight into complex natural phenomena?

Overloading on Emotion

Recently I've been trying to explain to my wife how emotional overtones in what people say can overload me. It was difficult to get across for two reasons.

The first reason is that she still gets the impression that I don't feel emotion because I don't show emotion. She struggles to understand how anybody can be experiencing feelings without any outward sign. This can be one of the key barriers to understanding between somebody on the autistic spectrum and somebody who is neurotypical.

The second reason is that overload is difficult to explain to somebody who has never experienced it. It's not identical for everybody; indeed I don't experience it to the same degree every time. Essentially it is overstimulation of some form, either emotional or sensory. The intensity of the signal coming into my mind causes me to fixate on it like a rabbit caught in headlights.

I pick up on emotional content most when I'm one-on-one with somebody. In a group there's typically too much going on and I start to miss behavioural cues. But face-to-face with one person I find I can often get the "out of band" data along with the signal. I can hear some emotions in the tone of voice and even recognise some body language. It's not as instinctive as it appears to be with NT folk. But now and again, particularly when I know the person well, I get an empathic gestalt of their emotional state.

Imagine if you will that you are sitting on a quiet, deserted shore. The sun is shining: it's warm. There's just enough of a breeze to be comfortable and the small waves lap rhythmically. You are relaxed; you lean back and close your eyes sleepily...

..and then you open your eyes again to find you have been transported in that instant to the middle of the city at rush hour. Traffic all around: engines snarling and horns blaring. People jostling and rushing all around you. Noise, smells, lights, touches coming from all directions: a cacophony registering on every sense at once. And that's how it feels to be hit by that tidal wave of emotion.