Tuesday, 5 April 2016

The Curious Incident of the Not Specifically Defined Autism Spectrum Disorder

Autism Awareness has been highlighted a lot recently, with items in the news about it, and the BBC Television drama The A Word.

A piece that caught my eye this week was in The Guardian by Sara Barrett. In this, she points up misconceptions, assumptions and generalisations about the condition. I think it is becoming more appreciated that autism is an umbrella under which many variations are gathered. At one time, 'Autism' meant someone who could not communicate themselves (in extreme cases not even able to speak), obsessive to the point of being able to recite the telephone book, and rocking back and forth and screaming whenever their strict routine is changed. But now, people do see there are related conditions like Asperger's syndrome which have an even broader spectrum all to themselves. In fact, in recent times, there has been a call to abandon all the subdivisions in favour of just one all embracing definition: Autism Spectrum Disorder.

Ten years ago, I gave a talk on my expression of Asperger's syndrome and my book The Feeling's Unmutual at John Moore's University in Liverpool. At the event, the audience, consisting of psychologists and other professionals as well as people on the spectrum, were asked if they felt that Mark Haddon's bestselling novel The Curious Incident of the Dog in the Night-time accurately depicted life on the autism spectrum. Interestingly, all the psychologists and specialists present thought it did and everyone on the spectrum said it didn't. For the latter, the protagonist Christopher was a textbook case—he had his obsessions, was preoccupied with logic, displayed little empathy (even using emoticons to explain the expressions on people's faces), and spoke in a monotone voice. It was as if Haddon had read Dr Tony Attwood's Asperger Syndrome—A User Guide for Parents and Professionals and personified all the key diagnostic criteria.

In 2013 I was invited to join Mark Haddon on the BBC Radio Four programme Saturday Live, presented by Sian Williams and Richard Coles. Mr Haddon was there to talk about the new stage production based on his book, and I was invited to talk about what it's like having Asperger's syndrome. When asked about the Asperger label, Haddon said he didn't have any specific condition in mind. Asperger's isn't mentioned in the text of the book at all; it's a tag his publishers slapped on a particular edition of the book. He said the character Christopher came out of a desire to report the events of the story in the first person in a monotone voice. This is consistent with what he said a few years previously when interviewed on a TV documentary about changing standards in children's fiction. He said it struck him that swearing and cursing was really funny when reported in a flat monotone, and so decided to do it all the more in Curious Incident.

Listen to the conversation on Saturday Live

One of my personal obsessions is how swearing is part of neurotypical communication, particularly amongst males. For example, when a man enters an all male peer group for the first time, to break the ice he is asked what he thinks about some recent sporting event, and when the conversation gets under way someone will drop in an expletive. Then the other members of the group will start to slip them into their comments too. If the newest member responds likewise, everyone present is happy—the bonding is a success. I find this really annoying because it is superficial and the words used don't fit the sentences grammatically. So I didn't identify with Christopher in The Curious Incident, nor did I appreciate the amount of swearing in the book. I didn't think people would talk to Christopher like that so much. Parents tend not to do it to that extent around their children, and a policeman at a railway station who realises Christopher is the boy everyone is looking for certainly wouldn't.

But for all that, I did like the book and I'm glad I've read it. Whether it's a generalisation of autism or not, it still puts the condition in the spotlight, and that can only be good.

Throughout my young adult life, I discerned that I didn't connect with people in quite the same way that other people do. At secondary school I was sent to talk it out with a sympathetic teacher. She asked why I was struggling to settle in, so I told her that 'everyone is false'. I'd observed that my peers changed their behaviour and even their views to fit in with the majority opinion. They did this because they were afraid of being themselves. I said I didn't do that and it was why I struggled.

Well, you can imagine how that went down! Often I was told I had a chip on my shoulder, that I spoke in a polite but slightly aloof tone, and was judgemental. All I thought I was doing was telling the truth.

The transition from primary school to secondary school had been a severely traumatic one. I imagined the next transition, from school into the workplace, would be one of relief, that I would now mixing with intelligent, sensible, mature people. What a shock I got when I started my first job. The situation was no different. It hit me then that there are unspoken rules mutually agreed by the majority when it comes to communication and attitudes, and if you refuse to participate, you will be ostracised.

I was also plagued by obsessive thinking, and this led to rigid perspectives and inflexibility. All this impeded my attempts at trying to make new friends. In my teenage years, I had no friends my own age. I preferred the company of older people.

And then there was my obsessive preoccupation with various television programmes, especially Doctor Who, The Tripods and The Prisoner. These all shared common threads relating to questioning the things people take for granted and being true to oneself. I was an emotional boy and often overwhelmed with confusion and romantic notions. The struggle to control these powerful feelings led to my identifying with Dr David Banner in the television adaptation of The Incredible Hulk. I knew what it was like to be a mild, gentle natured man, but be engulfed by mounting emotions. I was also heavily preoccupied with the loneliness of David Banner.

By my mid-twenties, I was seeing a clinical psychologist. She put my social awkwardness, anxiety and depression down to a series of traumas I'd endured in my early life rather than a neurological condition.

I didn't discover Asperger's syndrome until 2003 when journalist Gary Gillatt wrote an article called 'The Fan Gene' for Doctor Who Magazine. Then there was my rock star hero Gary Numan who had identified himself with the condition. Finally, I saw the BBC Two documentary My Family & Autism, presented by 14 year old Luke Jackson who himself had Asperger's. I knew then that this was the thing which described what had been 'wrong' all my life.

Discussing The Fan Gene.

The CK Publishing cover

What fascinates me now is that I was writing about the traits of the condition before I knew I had it. Way back in 1996 I had created this character, a robot school girl, an android called Anne Droyd. With no preconceived ideas and beliefs, Anne questioned everything. Like me in my teens she was at odds with her human peers, but unlike me, because she had no emotions, was totally unflustered by their reaction to her.

I wrote Anne Droyd and Century Lodge up for proper at the close of the year 2000 and published it with CK Publishing Ltd in 2002. A year later, my life would be changed for the better thanks to the discovery of a tag, a label—Asperger's syndrome. Another twelve months elapsed and Anne was republished by Jessica Kingsley Publishers as an 'Asperger adventure'.

While Anne has a number of Asperger traits, because she's a machine, she isn't ever described as having the syndrome. But in my teen novel The Blueprint, the protagonist Liam does have the condition. I thought up the character and the surreal dreamscape he gets trapped in way back in 1996, but didn't give him Asperger's until I finally wrote the book in 2012. With communication issues he has and his worldview, it made sense to connect Liam to an autistic spectrum disorder.

Me with the JKP edition of Anne Droyd and Century Lodge
at the real Century Lodge. June 2010
Now I understand my own history and personal development better than ever, and as a result handle people better than I used to do. I still have my phobic moments and obsessive phases, and I am reminded by them that I will likely never totally conquer it, but by having it defined I am much happier and content.

Saturday Live Original Blog Post.

Discover the Anne Droyd books here
Discover The Blueprint here

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