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

Food, Fastidious Food!

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Lots of people are fussy eaters. Often it is an ethical decision, like vegetarians/vegans, or out of necessity, such as those with allergies or medical intolerances. It was my relationship with food that was one of the most decisive parts in my diagnosis of Asperger’s Syndrome (AS).

Fussy would be a mild assessment of my eating habits. It began when I was a small baby and the time came for me to start eating solid food. There was a very slim selection of food that I would eat, and if I was made to eat certain things I would involuntarily regurgitate them. The only example that I can still remember was how my mum would try to get me to eat peas – they would come back up again almost instantly. Therefore I did not eat the vast majority of food that most other children did. I recall, early on in primary school, that when I told my class that my favourite food was not pizza, or burgers like theirs, but bread and butter they thought I was quite strange. Although my trouble did come in handy for my family members because once they knew what I liked they could give me that and I wouldn’t get bored with it.

For many years my average meal consisted of what you are likely to find in the average lunchbox: bread and butter; crisps, chocolate bar; yoghurt etc. I would eat this even during Sunday lunch whilst the rest of my family had roast beef or chicken with vegetables and all the trimmings.

Eventually I came to realize that it was the unusual consistency of new foods that made me want to throw up when I ate certain things. The specialist that diagnosed me revealed to me that this is common amongst those with AS because it stemmed from my brain being hypersensitive to touch and texture, and interestingly also explained why my mum’s homemade knitted jumpers felt like torture when I was small.

Things with fluffy textures such as bananas or mashed potato are a big challenge to me. The only way I have been able to expand my diet has been through slow and gradual exposure to new foods, I have built up a tolerance for small amounts of mashed potato as a result. Another way around it has been to alter the texture of foods to suit me. I love the taste of bananas and raspberries (ironically my favourite fruit!) but because of their textual I cannot eat them au naturel because they make me feel nauseated. But, If can cook them into other things like raspberry cheesecake or banana bread I can much away happily. I’m lucky that my attention to timing and small detail has lent itself well towards making me moderately good at cooking, even dishes that I can’t eat myself – just don’t get me started on the horrors of cottage pie!

The types of textures that I like most are hard and/or crunchy things like crisps or green apples, but it’s not an absolute rule as I am also a fan of some soft things like ice cream and jelly, I think what irks me the most are foods that have two different textures or consistencies put together, such as yoghurt or orange juice that have bits in or are non-smooth.

I wished to highlight my dietary idiosyncrasies because they should have been the alarm bells for the various teachers and doctors who overlooked my condition. I was even referred to an NHS dietician, who did little more than regularly measure me, weigh me and recommend multi-vitamin tablets. The main purpose for this blog is to raise awareness so that more people are diagnosed in childhood, as I know from experience that it’s much more difficult to be diagnosed as an adult.

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