Asperger's Syndrome is more common in males than females.  One in 350 people have it.   

I am one of them

by Kevin Phillips  

When many people think of Autism, they often either think of Stephen Wiltshire, the 12-year-old boy who could draw prominent buildings with astonishing and precise detail after glancing at them for only a few seconds or Rain Man, the film in which an autistic man memorised whole telephone directories, performed amazing feats of mental arithmetic and won huge amounts of money at a Las Vegas casino.

Whilst the above were helpful in raising awareness of the condition, savant skills, along with the stereotype of the child who is unable to speak and sits silently in a room engaging in repetitive body movements, they don't paint a full picture of this complex and very misunderstood condition. Autism is not a mental illness, it isn't misunderstood genius, it isn't a middle-class condition, it isn't someone being unruly or someone who is a bit eccentric, it cannot be cured, and isn't caused by upbringing. It is a lifelong developmental disability that affects the way a person with it communicates and relates to the environment around them. The causes are not fully known but genetic factors may play a strong part. I would personally rule out the MMR jab because autism was formally discovered in 1943 in Baltimore, USA, and the MMR jab was only introduced in October 1988. Neither would I say that the condition is on the increase. I believe that as awareness of it grows, more and more people are inevitably going to be diagnosed.

Autism is not a condition solely by itself. There is something that takes in a spectrum of related conditions called the Autistic Spectrum. On this are conditions such as Dyspraxia and ADHD, but more significantly, at what one would call the higher end of it is another form of autism called Asperger's Syndrome. This condition was discovered in 1944 in Austria by a paediatrician named Hans Asperger, a year after Leo Kanner published his findings.

Kanner's findings were published in English and distributed across the English-speaking world whereas Asperger's findings were published in German. They were unaware of each other’s work.

The war prevented Asperger's work being translated into English and it would be ignored and disregarded in the English-speaking world until 1981, but awareness of it picked up in the late 1980s and the 1990s. Like its cousin autism, Asperger's Syndrome is more common in males than females. In fact, recent figures show that 1 in 350 people have it. 

I am one of them. 

I was diagnosed with it on Wednesday 31st May 2000 at the Northern General Hospital in Sheffield after suspecting I had it for some time previously.  In this article I am going to explain what it is and give you some examples of my experiences of life with it.

Asperger's Syndrome can best be described as autism with language. Whilst some people with autism have profound language difficulties or delays, people with Asperger's Syndrome often have fluent speech with rapid mastery of language. Indeed, they have been called little professors or asked if they have swallowed a dictionary when young. A person with Asperger's Syndrome may be able to tell you in minute detail about the Solar System or provide you with the details of the inner workings of a PC or car engine or explicit information about the American Civil War, but not understand the basic rules that govern social interaction or be able to hold a structured conversation. Someone with the condition often will plough on about their hobbies and interests in great detail and depth, not realising or understanding that they are getting boring.

They may also often make remarks that are irrelevant to the topic of conversation but not to the person with Asperger's Syndrome, who is also often poor at small talk. I can relate to this because when I was in employment, at break time I would rather read a newspaper or a book than engage in conversation about Coronation Street, fashion or David Beckham, subjects that hold no interest for me at all. This was partly one of the reasons why I would struggle to hold down a job, but more on that later.

Appearance-wise, those with AS don't look different than anyone else. Due to this and the fact that they have good vocabularies and normal or above average intelligence, their disability isn't as obvious as Autism and their poor social skills may make them appear to be simply ill mannered and thus persuade authorities that they don't need any help or support at all, overlooking their true needs.

Those with Asperger's Syndrome know they are different but can't understand why until they get diagnosed. I was like a jigsaw piece that didn't fit. My mother thought that I was highly-strung or hyperactive.  My father thought I was shy and an introverted genius. In later life, people have even asked me if I am 'mentally deranged' or asked if I am 'high on drugs' when acting my usual self. All of these were wide of the mark.

Shy people know when to make eye contact and when not to, people with AS don't in most cases. Shy people don't have poor physical co-ordination or obsessions or routines.

There were no problems in the cognitive field with myself. I started to learn to read when I was aged four and knew the alphabet by the time I got to nursery but it was my behaviour and interaction skills that were the problem.

When I was aged 3 I had been playing with some toy cars and I went to bed, having lined them up. When I woke up, they had been moved and put into the box. I threw a tantrum because of this. Just after starting nursery, one teacher drew a number six in the air to show us what one looked like, so for
a while I walked around the playground writing and drawing in mid-air. The other kids must have thought it was very strange. I remember they used to impersonate me in the playground. The reason why I did it?  People with Autism and Asperger's Syndrome are visual thinkers. They have problems in general with abstract theories and ideas. This helped me visualise what a number 6 looked like.

Yet my habit wasn't picked up as being odd by any teacher or school authority. In fact I got no help whatsoever throughout school. I was never provided with any support, understanding or mentors. Remarks were often made about my character such as 'Not popular with the others. Often the butt of
their jokes' and 'A loner. Very fussy' and 'Weird'. Yet they didn't investigate the cause. The cause is equally as important as the symptom.

I found secondary school in particular to be tough. I struggled extremely when I went there. I was suspended at secondary school for defending myself in a fight. That was their way of helping me.

Those with both AS and Autism are hypersensitive to touch and sound, hence they don't like being hugged or the feel of certain clothes. I was difficult to toilet train as I was frightened of the potty for some reason. Perhaps it was the coldness of it I disliked, due to my hypersensitivity to touch. On the day I started nursery, I threw all my clothes off upon getting home.  I used to come home from the nursery and early school, and every day I would throw all my clothes off because I didn't like the feel of them. This went on for some time afterwards. At about the same age I was in a cafe and I spilt some pop on my trousers. I went into a screaming rage and steadfastly refused to wear them because of this. As a result I had to be bought a new pair. Today I can't wear wool as the feel of it irritates me.

People with Asperger's Syndrome have problems deciphering language, and struggle particularly with irony, clichés and metaphors. I clearly remember one incident in April 1983. I was sent by my teacher to fetch a tube of glue from another class, which was full. I walked in, asked for, and received the object. 

'What's the magic word?'  I was asked upon receiving it. I had never heard of this saying before so I replied straight-faced 'Abracadbra'. The whole class erupted in loud laughter. The teacher glared angrily at me obviously thinking I was trying to be smart. I was asked again and I said 'It works'. They all laughed again. She kept asking me for about 15 minutes until I finally said 'Please'.

I left school, hypersensitive to certain noises and sounds, with poor social skills, not understanding why I was different, struggling to understand metaphors and suffering from overloads and not understanding why I had different routines and special interests from others. School and early life was a bad experience but surely when I left I would find that job I enjoyed and settle down? It has not yet happened. I have tried all different kinds of employment but to no avail. I could have a conversation with nearly anyone providing it doesn't last too long. I can use my computer fine. No problem. I can't do both at the same time.  NTs^[1] usually have no problems with multi-tasking, whereas people with this condition generally find it difficult. I liken myself to a computer. A computer can take so many users at a time but if too many use one network it crashes.  Yet despite this, in work I was punctual. If I went to work at 8am I went there 10 minutes earlier. I can't stand lateness in other people so I think it is hypocritical for me to be likewise. I was reliable and I was honest. I haven't worked now for quite some time, yet like anyone I want to have a career and succeed in life, but I have never had the help and support to enable me to do so. Hence I have been set up to fail.

Yet there has been one great area I have had in my life. The Internet. This has been one of the best inventions of the 20th century, up there with the TV and the Radio. I often prefer to communicate by email rather than by telephone or spoken word. It is more predictable for me personally.

After I was diagnosed I felt I had to get the feelings I held about my life out of my system, so I decided to design a website. This was also to help other people to understand what my life has been like with this form of autism. Without wanting any sympathy, I believe I have missed out on much in life. I don't want to see other people with the condition go through what I and others with it did. In future, the standard diagnosis should be diagnosed between the ages of four and six. If we can catch them early, then a full assessment of their strengths, weaknesses and needs can be made.

If anyone goes on my website, and it persuades them to seek a diagnosis, or has simply helped them in some way, then it is fulfilling its purpose. This gives me a sense of worth and value that I am helping other people, and at least my experiences haven't been in vain. My website has led to me gaining public speaking bookings about my life with the condition and in the capacity of educating the public about these two very complex and fascinating conditions - Autism and Asperger's Syndrome.

People can theorise and speculate on what life is like with any condition, but the real experts are those who have it. It is they who are best at explaining how it affects them.

Thank you for taking the time and trouble to read this. I hope it has helped you.

Kevin Phillips, February 2004

^[1] Neurotypical syndrome is a neurobiological disorder characterized by preoccupation with social concerns, delusions of superiority, and obsession with conformity.

Biodata:

Kevin Phillips was born  in 1976 in Yorkshire, England, and has lived there all his life.  His time is spent on various hobbies including reading, listening to music, keeping weather records, ten-pin bowling and using the internet.   The last of these might be described more as a vocation than a hobby, as he maintains an extensive website resource for people like himself with Autistic or Asperger's Syndrome.  The website can be viewed at http://www.angelfire.com/amiga/aut/links.html