A Saturnalia Miracle

This is one of my favourite Christmas TV moments. According to the writers of The Big Bang Theory Sheldon doesn’t officially have autism, but he does show traits that are strongly associated with it. I myself find hugging people very awkward, so when I want to hug someone it is usually a very special occasion.

I first saw this before I was diagnosed with Asperger’s and I remember having a lot of understanding and sympathy for Sheldon. One of my friends on my teacher training course actually said they thought I was quite like him. That wasn’t the first warning sign to go unheeded!

Enjoy the holiday period and please spare a small thought for those with Autism and/or Asperger’s. The festive period can cause a lot of distress with a large increase in socializing and the disruption of daily routine. I know it’s hard to think about whilst – quite rightly – trying to enjoy yourself too.

I pray that you, and all those you love and care for have a happy and peaceful Christmas.

See you in the new Year!

– Shrugs, Not Hugs

Better Late Than Never

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Singer Susan Boyle has been diagnosed at age fifty-two with Asperger’s Syndrome. In the UK press the second question after “What is Asperger’s Syndrome?” was “How and why did she go diagnosed for so long and is this common?”.

Yes, it is very common.

I find myself lucky that I got my Diagnosis earlier than her at twenty-three and as more adults seek a diagnosis the more common it will become. In this link from the UK newspaper The Guardian from 2005 by Paul Wady (the narrator from the video I posted yesterday), who tells us his story after being diagnosed with autism at the age of fourty-one: http://www.theguardian.com/society/2005/oct/01/health.lifeandhealth

Without a diagnosis many people like myself will have an unrealistic and distressing view of life. I put myself through the unutterable torment of trying to train as a teacher of 11-18 year olds because I didn’t know that, despite knowing my subject very well, I didn’t have the required social skills to manage a class of kids and get them to learn at the same time.

Many people go undiagnosed with Autism firstly because it is a unseen or invisible condition. Asperger’s Syndrome can be hard to notice because it only appears in certain contexts. Expert on the topic Tony Attwood says that it is impossible to diagnose someone with Asperger’s when they are on their own because then they act “normal”. So because many people with Asperger’s find the company of others hard to understand and therefore tiring it is instinctive to isolate themselves from others. This is their comfort zone because it requires no effort to socialize. So if they spend lots of time alone it is hard to get a diagnosis. It was never my idea to get a diagnosis, it was my mother’s, so if I was totally alone I probably wouldn’t be writing these words you’re (hopefully) reading.

The second reason why Asperger’s Syndrome gets left unchecked is that it is usually a standard-to-high functioning form of Autism. There can be a feeling that even if suspicions creep in they are shrugged off as the person can feel like they’re doing fine as they are and don’t need an assessment. I was like this. Even though I was being counselled for social phobia, low self-esteem, depression and crippling loneliness I was adamant that nothing was wrong that I couldn’t fix myself. Maybe it was my old fashioned British Dunkirk spirit. I was also afraid of getting a diagnosis because it seemed like officially confirming that I was a defective person, a broken toy.

“You think I’m mental do you?” was my first rhetorical response to my mother’s urgings to get assessed for Asperger’s. I won’t lie: before I learned about Autistic spectrum disorders I just thought that having Asperger’s or the like meant that you were some kind of weird nutbag. It made me think of images of padding every corner in the house and trips to the local zoo on a special bus with my fellow loons. After I was diagnosed I spent a large amount of time feeling very ashamed because it felt that I was an official nutter.

I must say that now I feel very different about the whole thing. Now that I’ve realized how untrue my thoughts were I jokingly call myself crazy all the time. I try to remember the advice given by the chap who diagnosed me: “Asperger’s doesn’t have a cure because it is not a mental illness”. It is a deviation from what is common, not normal. I have a blood group that only 2% of my country’s population has, but if that doesn’t make me feel like a freak, why should a diagnosis of Asperger’s? My eyesight has got a red-green colour deficiency, which is real hindrance in buying clothes sometimes, but I don’t spend time fretting over it and it should be the same with Asperger’s – you just find a way around it.Image

Having a diagnosis stops you from beating yourself up about getting things wrong that others seem to do so easily. Yesterday at a car park I saw that a woman had left her car lights on. Because it was such a spontaneous social interaction I couldn’t think of what to do quickly enough and, surely enough, she dashed off onto a bus before I could shout or catch up to her. I initially felt really bad that I had got it wrong and spent the next forty-five minutes beating myself up mentally.

But eventually, knowing now that I have Asperger’s, I was able to stop and think to myself, “Yeah, you got it wrong. But it’s understandable because you don’t do that kind of thing very well. At least you’ve learned what to do next time if it happens again.” So having a diagnosis – even a late one – proved vital to me as it stopped me going down a route that had previously led to depression from feeling bad about myself. That is why diagnosis is important, the earlier the better, but if not just make sure that you (or your child/friend/relative) get(s) assessed and worry about the rest later.

This is autism

...autisticook

Last Monday, Autism Speaks told the world that autism is:
. . . living in despair
. . . fear of the future
. . . exhausted, broken parents
. . . lost, helpless, burdensome children

That kind of autism is not my autism. My contribution to the This is Autism Flash Blog.

I enjoy the sounds of the city around me, the strains of birdsong that I can hear even through traffic, the purring of my cat that almost but not quite manages to drown out all other sounds, the clicking of my keyboard while I’m typing. I hear the trains going past in the distance and I love getting sucked into that rhythm. When I listen to music, I become the notes, the melody, I can pick out the individual instruments and still hear how they work together to create a single sound. I sing along with…

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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.

The Poetry Paradox

ImageI find myself pondering the commonly held beliefs about autism and Asperger’s Syndrome (AS) on quite a regular basis. One that puzzles me is the perception that people with autistic spectrum disorders are emotionally devoid, that they are emotionless robots. I see myself as quite an emotional person. I study the arts, poetry specifically, which arose in me great swathes of joy, sadness, intrigue and awe. But does this put me at odds with what someone with AS “should” be like? 

Thanks, in part, to my mother’s devotion to reading me bedtime stories I had a passion for books and could read before I started school. At the age of seven I stumbled across a book called Golden Apples: Poems for Children in my primary school library’s meagre poetry section. In it I read W.B Yeats’s short poem ‘The Song of Wandering Aengus’. I cannot profess to have understood the poem totally at that age, but its language evoked a sense of idyllic wonder in me that remains to this day. I now study Yeats as a Masters student and his poetry can still move me to tears.

 

The Song of Wandering Aengus – William Butler Yeats

http://www.poetryfoundation.org/poem/244302

 

What also flies in the face of AS stereotypes is that I understand metaphor, symbolism and other unsaid meanings of poetry, which, according to most professional opinions, I shouldn’t be able to understand. Although I do think that in understanding poetry my mind can end up at the same destination as others’, albeit via a different route, but as I’m not a psychologist that explanation will have to suffice.

In one of my favourite films V for Vendetta (read the original graphic novel, it’s fantastic!) the main character, V, states that ‘Words offer the means to meaning, and for those who will listen, the enunciation of truth’. This means that, in his opinion, without words everything is meaningless, as our ability to describe or otherwise communicate them they have no meaning. This is how I feel about poetry. Words, ideas and feelings are, to paraphrase the movie ‘bulletproof’. However, this doesn’t solve our little contradiction. How can I feel this way if I am an unfeeling AS android? Simply put, it is a fallacy – but like most misunderstandings there is nevertheless a grain of truth at the heart of this misconception.

I think that it is true people with AS or full-blown autism have problems with feelings and emotion. However, it is not just a lack of these things that cause problems. It can be an abundance of rage at being hugged by a stranger, or too taking too much joy like being fascinated with toxins and poisons. What is probably the most common problem is that the feelings are there, but (myself included) the words don’t always come easily at the time. You may think that because I write in a (hopefully!) reasonably clear way with a voluminous vocabulary and a cogent turn of phrase it hard to see why I would find it hard to express my emotions. I intend to shatter any illusions of me you may have but I am much more expressive in writing because it can be rehearsed, and prepared in advance. I labour over everything I write, from academic essays to my Tweets or Facebook posts. So because I remove the spontaneity of my blog entries I can put my feeling across in a much clearly way than if we had just bumped into each other in the street.

It is important to remember that often, in terms of dealing with emotion, people with AS and autism can be quite immature. I think of it in this way: like a baby cannot handle solid food my brain needs feelings and external stimuli to be processed into a more manageable form, think of it like emotional mush.  For me poetry is the blender that takes intense emotion and processes it from being an ethereal and abstract thing to become more digestible through the words of the poet. This is also what encouraged me to write my own poetry, because reading poetry showed me a way to take confusing thoughts and emotions and map them out in an incredibly expressive way.

So in short, saying that everyone who has an autistic spectrum disorder is an emotionless automaton is like saying someone isn’t thinking because you don’t speak their language. They have a lot to say – but lack the means to communicate it.

 

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♞ 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