“I Will Change It!”

The stereotype of people with autistic spectrum disorders is that they don’t like change. Whilst this is true for some – including me – it often depends on which kind of change.

The green spaghetti man is from 1979 Doctor Who story City of Death. Scaroth is the last of his species the Jagaroth because unlucky chap accidentally blew himself up and the rest of his race. He only survived by being splintered through time, living multiple lives throughout human history.

The story is driven by Scaroth’s attempts to build a time machine to go back millions of years to change what he did so that his people survive. The twist is that the explosion that killed him started all life on earth, so the human race will perish if the Jagaroth don’t. This is the kind of moral dilemma that makes me love Doctor Who.

Watching it again recently I realized that sometime I feel like Scaroth, and not just in the having autism is like being from another planet way either. Ever since I was diagnosed with Asperger syndrome about 14 months ago I have wanted to go back and change myself so that I didn’t have the condition. It may be true that my higher-than-average intelligence; my honesty and my diligent attention to detail are likely to stem from it, but I still felt like I did. I would have traded those traits to spend weekends with friends, to have a girlfriend and to be generally more outgoing. It seemed to me that being clever and thoughtful didn’t amount to much if I was never close enough to anyone to share those qualities with.

However, thanks to some incredible people who have supported me such as my local Autism Advice service, my mentor at uni and my job coach I have learned to be more proud of myself. They have shown me that some people long to have the kind of gifts that I’ve been given, It’s just that because I’ve lived a life that is quite distanced from others I haven’t realized that other people can’t remember that Charles Dickens died in 1870; that Queen Victoria loved curries or what a dactylic trimeter is. Most of all they have show me that there are people out there who find it interesting! I just thought that my family’s disinterest in these things represented the population at large.

But does this mean that I shouldn’t change myself? No it doesn’t. William Blake once wrote that ‘The man who never alters his opinion is like standing water, & breeds reptiles of the mind.’ I have always been a firm believer in keeping as open a mind as I can to different possibilities. Therefore if there are things about having Asperger Syndrome that I don’t like, I can’t change my having the condition, but I can change what I do about it. Like Scaroth I had one roll of the dice and won’t get another, but instead of lamenting the snakes (or chutes), I should rejoice at the ladders that will take me to the finish. For example, I have started a social discussion study group at my university. The focus in on our work, but I also had an ulterior motive in putting myself into some social interaction with my peers. All the time I am looking out for possible ways to interact and socialize with others, instead of think of reasons not to as I did before. The benefit we have now is that in the world of social media we can keep connected with others much more easily.

In the end Scaroth was brought back to earth (literally) by a punch from Duggan, the seemingly hapless detective. An incredibly complex plan that has taken many years and millions of Francs to formulate has been scuppered by a firm dose of reality. Whether that reality is that you can’t stand around soliloquising your evil plan and not expect to get punched, or that you can’t change having Asperger Syndrome they are quite similar. Both show that you need to be in touch with the real world, or the real world will get in touch with you when you least expect – and it’ll probably hurt.

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That Man From Gallifrey

“I hate good wizards in fairy tales; they always turn out to be him.”

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A common trait amongst people with Asperger’s Syndrome (AS) is that they have an obsession. Mine is a TV show that started fifty years ago as a kid’s show made on the cheap.

Originally devised by Canadian Sydney Newman, produced by the Jewish, and even more unusual at the time, female Verity Lambert and directed by gay Indian director Waris Hussain, Doctor Who was already a mold breaker from day one. I could blog for several years on it, so I’ll focus on the main character: The Doctor.

The Doctor is my favourite fictional character. I first watched the show during the 1993 thirtieth anniversary repeat run on BBC Two as a four-year-old. It made an impression on me straight away. He’s a centuries old time travelling alien from outer space with two hearts, but I found myself drawn to him. I sometimes wonder if my love for the Doctor as a character is a kind of Asperger’s wish fulfilment.

The Doctor in a nutshell:  

Firstly there is the quite clichéd view of the person with AS as an alien from another world, which has some truth, although I think that is not very helpful in promoting AS confidence and self worth.  I can also appreciate what it is like to look human but not feel a part of humanity.

What I feel may be at the crux of the thing is how The Doctor marries intellect with social skills. All of my life thus far I have had an above average intelligence, (my psychiatrist’s words, not mine) but my social skills are quite slim indeed. This was particularly hard when trying to fit in with kids my own age at school. It would make sense for The Doctor to be my hero. He has endless brains, but makes friends with people wherever he goes, whether they are human, alien or robot dog. He doesn’t have to compromise his smarts to be charismatic and sociable with people, even complete strangers! And on top of all this he saves the day and never considers anyone as being too unimportant to help. He changes bodies, instead of dying, which could reassure someone with AS that change isn’t as scary as it sometimes seems.

These are all just ponderings. I am always quick to stress that AS doesn’t define my life; that it’s just a part of it. Millions of people who don’t have AS love Doctor Who and The Doctor, so this is just a theory. What I am sure of is that The Doctor can be a role model to all kinds of people. Even though he is a scientist he always appreciates the hidden power of everyday people and that it is important to go out there and meet them.

“As we learn about each other, so we learn about ourselves” 

(The Doctor, The Edge of Destruction, 1964)

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“I am Definitely a Mad Man with Too Many Box Sets”

One common characteristic of Asperger’s Syndrome (AS) is that it gives you a type of brain that loves to obsess over particular things. Lots of people are fans of things and many are obsessed with Star Trek, handbags, cars or particular celebrities. However, with AS sometimes an obsession can be quite unorthodox, or even dangerous.

A teenager with AS who is intensely interested in hair will often find a fulfilling and happy life as a barber or hairdresser. But what if their obsession is with fire to the point of becoming pyromania? Or an intense love of their Xbox (other video game consoles are available) means that they spend more time on Halo than they do with real people? This is where an obsession is defined, it completely occupies the mind. As for myself, I have several areas of interest into which I can very easily get obsessed. At the moment Chess has been on my mind a lot with the crowning of a new Undisputed World Champion in the young Norwegian Magnus Carlsen. Nevertheless my foremost obsession is Doctor Who.

Last Saturday I had a Doctor Who marathon to celebrate its fiftieth anniversary. I started at midnight and I watched it for sixteen hours straight, a story for each of the eleven actors to have played The Doctor. Then I went to the cinema to see the anniversary special in 3D. My family thought that I was mentally ill to do it, and they couldn’t understand why I went to the cinema to see something that was being put on TV at the same time. I have in excess of sixty Doctor Who DVDs and I am looking to get a new DVD rack because mine is full. I wear T-shirts with Daleks and TARDISes on them; three sonic screwdrivers; I am a subscriber to Doctor Who Magazine (who still haven’t printed any of my letters yet!) and I knitted my own Tom Baker scarf. I won’t labour on Doctor Who too much as I could easily write a thousand words on how great I think it is, but that isn’t what I want to speak to you about.

The problem with AS obsessions is that they can often be unwittingly used to provide comfort that is lost in other parts of life. By throwing yourself into an intense hobby I think the person with AS is trying to fulfil an unmet social need; that they are becoming a part of a collective to feel a sense of belonging. This is because it’s far easier to be a part of a fandom or a specialist field of interest than it is to be part of a social collective. Try looking at it from my point of view – I can feel a part of The Doctor’s story and his adventures, and a part of the global community of fans. I do so because Doctor Who won’t ever say one thing and mean another; The Doctor is always there inside every shimmering DVD disc and will never let me down like real people do. It’s not like being part of a social group where I have to work out what to say, when to say it and having to work out the feelings and motives of others. All of this is hard work and is crushingly disappointing to get wrong, which can be quite often.

So, the important thing is to accentuate the positive. People with highly specialised interests can be quite interesting to talk to, which can sometimes provide an in-route in social situations. My family are not very passionate about much really. So I’m quite different with my many interests from poetry to astronomy, coin collecting and my gadgets. This I can be bad because it makes you feel lonely and a bit of black sheep. Although it’s good too because it forces me to go and meet new people if I want to share my interests with others, and if we share a common interest conversations are a hell of a lot easier for me to handle. The problem then is if the other person doesn’t have the same amount of stamina as I do in waxing lyrical about my favourite things.

♞ Sixty-Four Squares of Uncertainty♖

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How Life Imitates Chess is a book written by Garry Kasparov, the greatest chess player ever and recently I’ve been thinking about how true his title is. I know that it’s a bit clichéd that someone with Asperger’s Syndrome (AS) should like chess, but it does fit my world view to a surprizing degree.

Chess, in itself, isn’t very complicated:  you move the pieces – some moving differently to others – to trap your opponent’s king piece. Where it gets complex is the different strategies and counter-strategies. The way I see social interaction is that it’s a bit like a game of chess; it’s not about just knowing what you plan to do, but trying to guess what the person opposite is going to do too. For people without AS knowing what the other person wants from a conversation, or why they have asked a certain question in a particular way comes as natural as yawning. But for me this is not the case, it’s as though I have to uncover their feelings and motives like a detective from a dime store detective novel.

Problems can sometimes occur when I apply my own internal logic to someone else’s behaviour. In chess I would move a certain piece after considering every possible logical response that can be made in response. I may move a piece in a plan to make the opponent move a certain piece in reply and capitalize on that. However, they move a piece that I wasn’t expecting them to, that may scupper my plans, forcing me to readjust quickly. The difference here between the game and social interaction is that I can alter my chess plan a lot more easily than I can after making a mistake in a conversation.  It might be that I don’t even notice the social faux pas that I have made and I end up, instead of losing a game, losing the offended person to them not wanting to talk to me again.

One part of chess strategy is an exchange of pieces, or a calculated sacrifice, where certain pieces are lost in order to gain more valuable pieces in return (google relative chess values to see which pieces are worth more) and thus gain an overall advantage. This is another way in which life is like chess, especially considering life with AS. It is a condition that makes being in your comfort zone very comfortable indeed and makes it easy to avoid compromise by shunning the company of others. Just like you may sacrifice a chess piece in order to gain a more valuable one, sacrifices must be made with AS in order to benefit in the long term. It is difficult and scary to go to new places and meet new, different people, but, trust me on this; the fear is small potatoes compared to the crippling loneliness of solitary life. When I used to hide away from social life I eventually ended up depressed. One morning I pulled back the curtains and the first thought that crossed my mind was if jumping from that window would end my suffering, and it was what spurred me on to seek help.

Chess has often been likened to great militaristic battles of wits such as Cromwell Vs Charles I, Nelson Vs Napoleon or Monty Vs Rommel. However with AS there is often a battle of wits going on over where to stand at the bank, what to talk about at a party or what order to eat things in at dinner.Image

“I am he, and he is me”

Having Asperger’s Syndrome(AS) is a bit like having a part of yourself you can’t control, which always turns up at the moment when you’re trying be cool and in control of things. Seeing as some previously lost episodes of Doctor Who have been found in recently in Nigeria I thought a Time Lord flavour would be appropriate.

In the programme’s 10th anniversary story The Three Doctors the then current incarnation of The Doctor, Jon Pertwee (1973) is being faced with a dangerous enemy who seeks to dominate the universe: Omega. Just when he is trying his best to seem in charge, and come up with a game plan to save everyone an alternate version of himself literally pops in to say hello. In the story the current Doctor is, at least to begin with, quite embarrassed about the part of himself he would rather keep quiet and not get in the way. This is how it can feel to have AS a lot of the time. You can be in a social situation that you’ve rehearsed or practiced time and again, but then something unexpected happens. A new person arrives, or a change of location or maybe the other person you’re with decides to talk about personal social things like relationships, or inviting you to a party.

However, you shouldn’t feel guilty or stupid, but to bluff your way through it as best you can and remember what happened so that you can learn what to do next time. The most important thing for me to remember is that Asperger’s is a part of me, just as much as my skin colour or fingerprints. It makes me who I am: different, not defective.

Duelling with Demons

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For most of my life thus far I have found  myself surrounded by my own thoughts, hopefully the more coherent of which will pop up on this weekly blog. However, after being diagnosed with Asperger’s Syndrome at a later stage in life negative thoughts and feelings are serious pitfalls for me as I get used to having the condition.

From a psychological perspective this is no surprise, as there is a documented link between Autism Spectrum Disorders (ASDs) and Depression. But after a long struggle to get past my depression I will have to be regularly keeping what Churchill called his ‘black dog’ from my door. In my experience, it is easy to believe the depressive thoughts because, leading quite an isolated and introverted life, I don’t have the thoughts of others to measure against. For example, before I knew I had Asperger’s I thought that when I when to public places everyone would be looking at me and judging  everything I do and say, even down to how and where I stand or sit in a shop or café. I didn’t realise that they didn’t have the same attention to detail that I have. Also, because of the condition, I find it difficult empathise and understand the thoughts of others. The way I picture it in my mind is that it’s a bit like trying to use electricity when on holiday abroad: my brain needs an adaptor in order to plug itself in and understand what others are thinking and why. Once I learn how to fit this adaptor I’m not all that different from everyone else.

Another thing that I, but not necessarily everyone with Asperger’s, suffer with is a consistently heightened sense of mindfulness. The way that I explain it to people is that I have a Wikipedia brain, not because I know everything, but because everything I think of has a link to something else like the Wikipedia website does.

So, for example, when I see a mango on a market stall it makes me think of the video game Crash Bandicoot because it has Wumpa fruit, which look like mangoes. This makes me think of my old original Playstation I had as a kid, which then makes me think of the shop my mum bought it from, which makes me think of the shopping centre that shop was in, which makes me do a detailed analysis of how the shopping centre has changed in the approximately fifteen years since, and this will lead to something else and so on. I hope it reads as tedious as it feels, then you will start to understand what it’s like.

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Don’t get me wrong – it’s good to let your mind wonder when you’re in a waiting room and you’ve forgotten to bring a book. (I bring my own reading material when I go to the waiting room at the doctors’ surgery. Firstly because their magazines are rubbish, and also because they’re probably covered with germs because they’re read by sick people) But it does drive you mad when it happens when you’re trying to sit an exam or go to sleep – when it happens it feels like a gremlin is at the controls of my brain.

Sadly it’s because of my Wikipedia brain that I’m often in danger of getting depressed, because I come across things that remind me of sad times like a DVD I bought whilst I was in teacher training, which makes me go over in my mind everything that happened [see: On what should have happened in ’92 (pt. III)] which makes me think of the self harm and alcoholism I fell prey to. This often makes me start to feel the de-energising lethargy that I had when I was at my lowest. Also, the beginning and end of the school year is tough for me as it is usually quite prominently covered by the news and other media.

However I have developed a strong weapon that I can use against these kinds of thoughts. The first of which is my own DIY version of colour therapy. I have always been cheered up by bright colours, especially green, which is my favourite. I surround myself with bright colours which seem to give me good feelings, which can involve going for a walk in bright and open spaces, or handling brightly coloured object such as marbles or looking at my collection of butterfly photos. The second is to surround myself with my favourite things such as Doctor Who; video games; comic books; my telescope and other geeky stuff. Luckily, thanks to my Asperger’s, I have no problem concentrating on things that interest me and this has quite a good calming effect on me. I’m learning now to surround myself with people who are close to me too – it’s a work-in-progress as I don’t naturally connect with others, so it’s not the first thing that I instinctively think of.  But I’m sure I can learn how with some time and practice.

With all this in mind I think it’s important when having negative thoughts to practice spotting the signs that tell you that you’re starting to feel depressed. One of mine is when I start making assumptions about what others think of me – even though those without Asperger’s can instinctively read between the lines and understand others, which I cannot do easily, they’re not mind readers. So I tell myself “you don’t really know that’s true!” when I feel inferior because of my condition, or when I feel like I’ve made a social faux pas that makes everyone think that I’m crazy. I have to remember that, like Sheldon from The Big Bang Theory, “I’m not crazy, my mother had me tested”.

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† Interesting Fact: The figure of a large dog has been associated with depression or woe in general for centuries. This comes from one of my favourite interests – astronomy. The constellation Canis Major, Latin for Great Dog, appears near the horizon in the depths of winter in the Northern Hemisphere, when people are vulnerable to the depressive condition Seasonal Affective Disorder (SAD) because of the lack of Vitamin D from sunlight because of the dark and cold conditions. People used to call this time ‘dog days’, which is now a phrase that can mean a period of sadness or lethargy. When Spring comes Canis Major goes away, which gave rise to the saying ‘dog days are over’ and a popular song by Florence + the Machine, covered by the insufferably cheesy cast of Glee, a TV show which makes me feel depressed and/or lethargic. In the Southern hemisphere the dog days are in the height of summer, where the sultry conditions have a similar draining effect on people.

Being Wrong with Authority

“Logic, my dear Zoe, merely allows one to be wrong with authority.”†

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One of the first things I had to tackle after I found out that I have Asperger’s Syndrome was to understand how I think about everything. It was like having to step out of my mind and observe it from the outside, looking in, like being in a brain zoo.

To my surprise I was made aware by the specialist who diagnosed me that my brain is highly logical. This was quite a shock because I write poetry; I’ve got a degree in English Lit and I’m generally quite creative. He explained that because someone with Asperger’s Syndrome such as me can find the world a very baffling place we use logic to apply a sense of order to an otherwise unordered existence. He also told me that because my condition is moderate/severe, but I have an above average intelligence it is likely that I have to scrape by without anyone realising that I’m autistic. I logically work out some social situations and devise plans on how to conduct myself through them, and the ones that I couldn’t work out, e.g. loud parties and making friends, distressed me so much that I developed an aversion to them that bordered on social phobia.

To give an example of this I will the use a now slightly dated British expression that still gets used in my family, which is to get the needle. If someone gets annoyed we say that they’ve got the needle about something. I’ll tell you how I know what that means – it’s a fifty-fifty split between context and logic. To start with I was able to work it out because when I saw that someone got annoyed and someone said that he/she had got the needle I linked the two together. However, what really helped me to understand the metaphor is how, without realising it at the time, I used logic to form a hypothesis. Firstly, apart from amongst sewing enthusiasts, people in general find needles upsetting, as I found out when was inoculated at school and I saw the reactions of my classmates. Also needles are sharp, quite dangerous and made from cold hard metal, all of which are negative things that can be logically grouped with the negative feelings of annoyance or distress. So in short, to have the needle is to feel bad.

Inevitably my logical way of thinking extended to how I thought about and understood others, which, to be honest, is where it’s most likely to come unstuck. I have always found the behaviour and motives of other people difficult to decipher. This is one of the three ‘Triads of Impairment’ that are at the heart of Asperger’s Syndrome, which any reliable assessment for the condition will be looking for. They are the difficulties of:

  • Social & Emotional
  • Language & Communication
  • Social Imagination

This means that I find it extremely difficult to predict the behaviour of others, especially when they act irrationally. The best I can do is to use a memory of a social situation that may have been similar and use what I learned from that to make informed decisions on how best to act.

The best example of how this affects me is when I bump into people who try to persuade you to buy something or donate money to charity. The primary problem is that it is an interaction that I haven’t had time to prepare for. My mum tells me that I should say I’m not interested and keep walking but to me each time is different as the person may say different things in a different way depending on their personality and what it is they’re selling/collecting money for. Usually I struggle to say anything to them as they rattle off their prepared argument as to why I should care about the polar ice caps or my credit rating. My standard approach is to listen to what they have to say and then say that I’ll visit their website. I suffer because, due to my Asperger’s Syndrome, I don’t handle being put on the spot very well because I can’t think of what I should say quickly enough.

Although, having an impaired social imagination also has an upside. Being really logical helps to keep you from panicking in emergency situations and because it makes it difficult to emphasise with others it makes me hate telling lies because it relies on understanding what another person would or would not find believable. So there you have it ladies – there’s some boyfriend material in that somewhere, I’m sure.

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†Quotation and photo from Doctor Who story The Wheel in Space by David Whitaker (1968)