A Bit Aspie

I suppose, people being people, that other Aspies have tried to explain how the condition affects their functioning in some way, such as difficulty reading non-verbal signals, only to hear, "I, like, get that too, you know: maybe I'm a bit Aspergers." Even after ignoring the involuntary wince that is triggered whenever language is tortured in my presence, I struggle to respond to that. While I don't want to dismiss out of hand the possibility that they might be correct, it can be hard to explain how AS (and autism) are  about more than being awkward in social situations.

What I want to say to these people - but can't because my AS makes it too difficult to formulate an adequate response without zoning out for too long and dropping out of the conversation - is that I doubt very much whether they do have AS. AS is not like a salad bar where you get to choose how much of each symptom you want. It's not something I chose to have - I have it, live with it and cope with the challenges as best I can. Each symptom taken in isolation does not define the condition: it is called a pervasive disorder for a reason. It is a set of symptoms, usually with varying degrees of severity, and having AS means you pretty much got the lot.

What is "the lot"? To quote the Wikipedia article which summarizes the DSM-IV diagnostic criteria,

[...] a pattern of symptoms rather than a single symptom. It is characterized by impairment in social interaction, by stereotyped and restricted patterns of behavior, activities and interests, and by no clinically significant delay in cognitive development or general delay in language.

This doesn't even attempt to explain why these symptoms occur: it is just a "pattern" that recurs and has been labelled as Asperger Syndrome. The label is a convenience, nothing more, to cover the effects of particular cognitive differences. It does not describe the differences between individuals with AS, the varying degrees of difficulty we face in everyday situations. Couched in the most general terms it says nothing about how it feels from the inside - how exhausting it is to deal with "normal" life, to feel so often that we have to consciously act "normal" with other people so that we are not seen as alien, to face censure for "inappropriate" behavior when we don't conform to their "normal" standards.

I doubt that any sighted person would describe themselves as "a bit blind" because they close their eyes occasionally. Likewise, they are not "a bit Aspie" because they sometimes feel awkward in social situations or have a fanatical interest in, say, football. There is evidence that the Aspie label is somehow becoming seen as "cool" - I can't understand why this should be so, because I know first-hand that the reality is that even in a mild form it causes significant difficulties for those directly affected, and also indirectly for those such as partners in relationships.

Freedom

Freedom is an illusion. Freedom of expression, freedom of movement, freedom of action; all are constrained in one way or another by the written and especially the unwritten rules - conventions - of society. The uncomfortable truth is that there is no such thing as freedom from consequences.

Everything we do, everything we say has an effect, whether large or small. Every time I articulate an opinion it colors somebody's feelings towards me: if they agree then they feel more closely aligned with me; if they do not then they feel alienated. Even the way I express myself has an effect: my vocabulary in the workplace is more extensive and less coarse than when I'm in the pub. This is because social conventions exist in both places. There are certain behaviors that would be seen as inappropriate in the "wrong" context, such as swearing or drinking in the workplace. So while it is physically possible for one to, say, drink a beer at work, one would certainly face serious consequences as a result.

Can one be said to be free to act when one is physically able to perform an action that will result in censure or punishment? I do not believe so. I believe that freedom implies that no harm will befall one as a result of one's actions: that there will be no consequences that one is unwilling to accept.

Unwilling to accept - that is the crux of the matter. If one truly does not care about what happens as a result, either to oneself or to others, then one is free to do as one pleases. Greater freedom comes at the cost of diminished responsibility: being responsible for one's actions means being aware of and accepting the consequences.

Respect is a factor in this: respect for the right of others not to be offended or harmed by anything one might choose to do. Consider the idea of freedom of expression: a concept that many, especially in the Western world, feel is an inalienable right. A liberal interpretation of it could be construed as a license to lie, offend, incite hatred or violence - one has the freedom to say anything at all and because of that one is absolved of any responsibility for the outcome.

I recall the controversy over the publication, initially in Denmark, of cartoons depicting the Muslim prophet Muhammad. The publishers used freedom of expression as their defense; however there appeared to be an almost complete lack of understanding of the degree to which many Muslims would be offended, of the utter revulsion they feel towards those committing what they see as blasphemy. It is the same revulsion that many people feel towards those who desecrate Jewish cemeteries with Nazi graffiti, or those who abuse children. Would you say that people should have the freedom to commit those acts? Or should they instead have enough respect for others' rights that they could not do something so harmful? Understanding that, I feel I have a responsibility not to cause such offense - and in this it does not matter whether it offends me: it is about respecting the rights of others. Is it not reasonable to expect other people to behave with the same respect?

Having started on the subject of freedom, and dismissed it as a chimera, I have ended up reiterating my long-held views about respect and responsibility. I do not worry about whether I am "free" - it is a concept that carries little meaning for me with my consciousness of the social constraints within which I must navigate my daily life. I try to act intentionally according to my beliefs: in basic terms, to treat others as I would wish to be treated in return. It is more important to me that I be treated with respect than that I should feel free to do as I please.

To All The Bullies

There are some people out there who enjoy hurting others. I'm not talking about the sadistic psychopaths detained in high-security hospitals and prisons, although there are similarities. I'm talking about bullies. Those contemptible people who inflict mental and sometimes physical abuse on those they perceive as weaker.

I've suffered the teasing, taunting, name-calling and threatening behaviour. I've felt too afraid to even bear to be within sight of any of those responsible. I've ended up with depression, withdrawing - literally locking myself into the safe haven of my bedroom.

I would wonder why I had been singled out, what I had done to deserve such hateful treatment. Typical victim mindset, blaming myself - assuming the fault lay with me. Because I never fitted in: the quiet, shy one on the edge of things. Always nervous and awkward in social situations and with a set of unusual behaviours such as hand-flapping and repeating my words to myself that made me stand out.

I'd love to be able to say that I rose above such things and didn't let the bullies bother me. But it wouldn't be true. It bothered me to the point of breaking down in tears of pain and frustration. I ran away with my tail between my legs. I never confronted any of those responsible - that's something I can't handle. I shut down when faced with that kind of situation - confrontation and aggression.

I think it would be understandable if I hated those who had bullied me. But I don't. I fact I don't think of them individually at all, but rather as a class of people who are poisonous and to be avoided. They are narrow-minded, insensitive, morally-deficient and totally unnecessary and unwanted in my life. I have absolutely nothing to do with them. I carry on with my life, stick with the people who are my friends, and exclude any who would harm me.

The bullies may or may not care that I have excised them from my life - either way it doesn't matter to me. Because I now accept how I am - I'm content to be myself. Different is good in my opinion. I have supportive friends and a loving wife. I got told I'm "special" by one of my friends last night - little things like that make me feel good about myself. I have people who care about me. Why would I allow negative, destructive influences into my life? So I'm not even going to say goodbye to the bullies from my past - they are long gone and aren't missed.

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.

Shutdown

I shut down for about three hours on Saturday. I don't know exactly what the triggers were this time - I do know things have been building up and getting on top of me lately. I've been feeling more insecure than usual and I've largely avoided making phone calls and other interaction with strangers. I don't even know what the "final straw" was this time - one minute I was eating my breakfast; ten minutes later I was sitting, hunched over, rocking gently and staring into space.

I am almost completely non-verbal while shut down. I hear what's going on around me but I can't respond - words rush around my head but I can't get them out of my mouth. It's as if there's a paralysis. I can't write either - my fine motor coordination is affected too much for me to form the letters. In that state I feel like an observer in my own body - I'm stuck inside without much control - just along for the ride.

I can't handle much stimulation while shut down - I will actively avoid loud noises, physical contact and bright or flashing lights if I can't block them out. I prefer to be left alone in a quiet, darkened room until I come out of the state naturally. In fact, too much sensory input while I'm shut down can switch me into a meltdown. I avoid eye contact - I just stare blankly ahead or sometimes close my eyes, more so if I know I'm alone because I worry about being touched unexpectedly if somebody approaches me.

The best way to approach me when I'm shut down is to speak slowly and quietly in a soothing tone - the actual words don't matter so much. Don't get too close to me because that makes me uncomfortable, don't shout and don't sound aggressive - any of that will deepen and prolong the shutdown. A hug is usually the only contact I can handle - but if I stiffen up then I'm not receptive at that point in time. In general the best thing to do is be patient and wait for me to come out of it.

Prevention is better than a cure - so the proverb goes. How can a shutdown be prevented? Well, it's a reaction to stress, so prevention is all about reducing or even avoiding stressful stimuli. What I find most stressful are unfamiliar social situations and forms of aggression or confrontation. But a shutdown often isn't an immediate reaction to a particular event. It will be a combination of factors that build up over time - possibly even years - and can be triggered by something seemingly so trivial that I might not even be aware of what it was that pushed me over the edge.

This can be confusing for people around me who may not realise what is happening - that I have shut down - and try to interact with me without any response. I've had people accuse me of being ignorant or sulky - as if I have any control over shutting down and am just choosing not to speak to be awkward. I find that particularly insulting - just because I don't have many obvious outward signs of the shutdown there is an assumption that I'm being deliberately uncommunicative. So let me say it again: I have no control over a shutdown. When it happens I am simply along for the ride, trapped inside until I get a measure of conscious control over my body again. How could anybody really think I'd shutdown if I had a choice? So please have a little patience and respect.

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!

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.