It must be remembered that people with Asperger’s syndrome (AS), as it is with anyone on the autism spectrum, have difficulty making and maintaining friendships so therefore have little or no benchmarks upon which to judge their personal experiences and feelings. Asperger’s syndrome is not a ‘mild’ form of autism. It is a form, and brings its own set of difficulties. The privilege my Kanner’s cousins have is to say nothing and throw a tantrum. I am cursed with speech, constipated by it. I must, to the death, voicelessly scream to be heard.
We are labelled egocentric. Ours is a self created world, where the individual on the autism spectrum can live without fear or confusion. It is conducting our own orchestra so that all the different aspects fall in to a manageable tune. There are few people who, in truth, do not prefer to maintain a high level of control in their lives. Typically, most like to plan their careers, holidays, children’s schooling, where they live and how they spend their money and free time. For people on the autism spectrum, life can be a labyrinth of stress, conflict, confusion and culture because, although born on this planet, its habits, customs and language are alien.
Asperger’s syndrome is not a mental health issue. Along with other autism spectrum conditions, it is neurological. The brain is wired differently from that of most other people. We are not Asperger ‘victims’, as newspaper headlines suggest. We are more likely to get mental health problems, such as depression, because the world can be so difficult to understand. Communication and self expression are really hard for people like us. Some, with classic autism, do not even bother to try and can have delayed speech, or non at all. Nobody would dare to suggest a blind person was ‘victim’ to sight loss, or a wheelchair user ‘victim’ to mobility problems. Ours is a ‘hidden disability’. We can walk, talk, hear; most of us speak and certainly feel. Anyone with any form of disability would tell you the biggest obstacle they have in life is the prejudice of other people.
When I began to look at the relationship between obsessive compulsive disorder and Asperger’s syndrome, I never expected to find anything as traumatic as Tony Attwood’s description of Obsessive Compulsive Disorder: ‘In OCD, the person has intrusive thoughts he or she does not want to think about: the thoughts are described as egodystonic, ie distressing and unpleasant.’
‘Distressing’ and ‘unpleasant’ are sanitized words that in no way express the devastation experienced by those whose autism causes so much suffering. Even very small diversions can be intolerable.
When I became pregnant with my eldest son, now 26, I became terrified of dying. Against a background of high media profile CND (Campaign for Nuclear Disarmament) activity, coupled with having been brought up as a Quaker, who are traditionally pacifists, it fed my deepest fears. Crossing the road became an ordeal. What if a car came ‘out of nowhere’ and killed me, and my unborn baby? Life revolved around listening to the hourly news on the local radio. I would wait, coat on and ready to go out, feeling physically sick with fear, for a news bulletin saying someone, somewhere, had pushed the red button to launch us all into oblivion. It did not help that we lived a mile from both an army base and motorway and eight miles from an airport. All of these were realistic targets for nuclear attack, according to CND propaganda. This was how life was until we moved house, when my son was 18 months old.
Attwood goes on to explain that typical people obsess about ‘cleanliness, aggression, religion and sex’, whereas in children and adults with Asperger’s syndrome, their thoughts concern ‘cleanliness, bullying, teasing, making a mistake and being criticized’.
It is worth noting that cleanliness is first and foremost in both of Attwood’s lists. We may think OCD starts and stops with obsessive hand washing, house cleaning or performing tasks in exactly the same order, at the same time of day. The second words in Attwood’s lists are ‘aggression’ (typical) and ‘bullying’ (autistic) which is interesting because they are both very obviously related, yet somehow different. Aggression is generic but bullying is very much more personal. Aggressive is rarely, I would suggest, either a word or term directed at the self, by the self. Who ever says, I am feeling aggressive towards myself? Bullying is very much from one to another.
As someone with Asperger’s syndrome, it is quite easy to identify with the latter list; and also the former, because Tony Attwood does not include religion or sex in autistic obsessions. Anything can be obsessed upon. Whilst age and experience deal with most of the above, it is important for people involved with AS adults that it is by degree these issues are conquered or, at least, controlled. It is useful for anyone to understand these difficulties, differences, disabilities, exist. We learn to cope but not necessarily recover.
One way of doing this is by absorbing ourselves in an area of special interest. For some, and I mean specifically those on the autism spectrum, they can lead to employment, or a resource to making friends and meeting people. As many spectrum people find socializing very difficult, it helps to have interests that bring them into contact with like-minds. They may be obsessive and compulsive but would not be diagnosed as having OCD because their interests are pleasurable, an escape and a way of building social networks and friends.
Author Daniel Tammet first came in to the public awareness in a 2004 television documentary. Called The Boy with the Incredible Brain in the UK, it showed how Tammet, a man with both Asperger’s and savant syndrome, broke the European record for reciting pi to 22,514 digits. He is a linguist and teaches French and Spanish through online courses. Now the author of two books, Tammet has built a successful career out of his special interests and obsession with numbers. As a child, he had no friends so invented one of his own. In his book Born on a Blue Day, Tammet describes Anne, as he imagined her name to be, in great detail, from her height – he pictured her to be very tall- to her clothing and gentle tone of voice.
Dr Liane Holliday Willey also has Asperger’s syndrome. As doctor of education, she specializes in the area of psycholinguistics. Willey developed an obsession with language at high school.
‘Words and everything about them,’ she says, ‘hold my concentration like nothing else.’
She enjoys their shape and the way they can be moulded into ‘precisely what they should’. As someone who often struggles to make conversation, the written word offers the opportunity to express thoughts and ideas that spoken language cannot. Like Tammet, Willey also had imaginary friends.
Ten year-old Kenneth Hall, who has AS, wrote a book describing his life and family relationships, discussed things he enjoyed and others which he found difficult. He has invented his own ‘world’ and calls it Gaelica. In his book, Asperger Syndrome, the Universe and Everything, Kenneth says this: ‘Gaelica is better than this country because there is peace there. In Gaelica I am king but I am not superior.’
Hall, Tammet and Willey have all found ways to cope with stress and lack of peer relationships through fantasy worlds, imaginary friends and obsessive interests. Tammet is even inventing his own language, Manti.
Tammet loses himself in landscapes of his mind that visualizing numbers gives him; Hall has Gaelica and Willey her love of language and adolescent fixation with America’s wild west.
My eldest son went through patterns of intense interest as soon as he was able to toddle around the local library and choose his own books. He went through various passions, from space travel, reptiles, spiders and snakes, heavy plant machinery and farming. Fiction never interested him very much, which is typical of a child with Asperger’s syndrome. Once he had absorbed as much information as he could on one topic, he would drop it and move onto something else, without ever looking back. It was as though his prior passions had never existed. He was also extraordinarily dextrous with his hands and became obsessed with painting Citadel miniature figures. He rarely played with them but took great pains to add minute detail to the characters. On eyeballs no larger than a pin head, he would paint red lines on the corneas by using a single hair from a paintbrush. Like his younger half brother, Oliver resisted making peer group friends and was often in trouble at school on account of his odd and often violent behaviour.
Martin, the youngest of my three children, has left his obsession with cars behind and is now making friends through his new love: the skinhead scene. He has carefully researched the roots of the culture and is currently building an impressive library of ska and reggae music. He has attended events, nights out and gigs and has helped to organise functions of his own. Through his interest, he has travelled around the country and co-moderates skinhead internet forums. On his Facebook profile, Martin, who calls himself Ron, says:
‘I'm a skinhead nor more no less, i like my reggae and ska along with soul, non racist OI and some punk. I also like drinking beer going to do's and having a laugh with mates
A skinhead is a skinhead and a racist is a racist!’ (spelling and grammar his own)
For people with autism spectrum disorders, special interests can provide positive opportunities, careers and escape, for some they may become more sinister and harmful. These interests are very different from obsessive compulsions. Reflecting on the egodystonic aspect of Obsessive Compulsive Disorder, when the ‘special interest’ tips over into an all consuming terror, it inhibits one’s ability to function normally.
Gary McKinnon
At this point, it may be useful to look at a very high profile case, regarding a man called Gary McKinnon. He hacked into the US defence system to look for evidence of extra-terrestrial life and free energy.
He was diagnosed with Asperger’s syndrome after Professor Simon Baron Cohen, of the Autism Research Centre in Cambridge, saw a news report on McKinnon, identified his autistic traits and invited him to Cambridge, where an official diagnosis was obtained. He believes that McKinnon is very likely to commit suicide were he to be imprisoned in the US.
Many people on the autism spectrum would immediately identify with McKinnon’s state of mind and agree with Baron Cohen that his motives were altruistic. What Baron Cohen may fail to appreciate is the absolute intensity of McKinnon’s fears.
Let us look at why Gary McKinnon was ‘obsessed’ with UFOs, free energy, and, perhaps, (US) national conspiracy. He possibly felt he did not ‘fit’ into normal society. My guess is he was looking, among other reasons, for himself in his search for extra terrestrial life. A very high proportion of people with ASDs, like Gary, feel they must be from another planet so it makes sense to go out there and look. His lack of imagination, which is one of the diagnostic criteria of anyone with Asperger’s syndrome, did not appreciate the outcome and trouble he may have caused. It is very common for people with ASDs to describe themselves as ‘alien’. It explains their detachment and lack of belonging in the wider community. Once an idea has been planted inside the mind of an autist, as I call them, it is incredibly difficult to get away from it. Obsession takes hold and egodystonia takes its suffocating grip. Absolutely nothing else matters and perspective ceases to exist. Autistic people are very literal. It is an absolute in the black and white mind of the autist. Eating, washing, work, social connections, family, time, relationships and even going to the toilet are irritations that need to be attended to.
Professor Baron Cohen says:
‘Tragically, this narrow attention-to detail, and relentless pursuit-of the truth, together with his (McKinnon’s) reduced social awareness, has led him to act in a way that has brought him into serious trouble.
‘It is important to recognise that his emotional age or social intelligence is at the level of a child, even if his intelligence is systemising at an advanced level.’ (Daily Mail 08th July 2009)
McKinnon’s deep seated interest became obsessive.
McKinnon exchanged his paid job for a full-time hacking career, he stopped washing, became nocturnal, ate rarely, smoked marijuana and spent all day in a dressing gown. (Sunday Times, August 2, 2009).
McKinnon’s alien thoughts had taken over. He was compelled to find out if there was ‘life out there’ and what, he was convinced, the government of the United States was hiding. His mother, Janis Sharp, says, in an interview on BBC Breakfast Time, ‘passions become obsessions’ and that ‘people with Asperger’s tell the truth even to their own detriment’ .
Has anyone in the media sought opinions from another Asperger’s syndrome ‘sufferer’? Whatever happened to the balance we are taught to seek as journalism students?
In my experience, it seems that the neurotypical (non autistic) world needs to segregate, or pigeonhole, certain traits. It is far easier to slap on a label, from ‘unique individual’ to ‘alternative’, ‘eccentric’, ‘weird’, ‘geek’ or tags far less flattering but too numerous to mention. Worse still are those awful preconceptions that, like fallen boulders, we somehow have to crawl out from under. This is the attitude that Gary McKinnon is facing from the US Government. They have decided that his actions were indeed malicious and will not consider the altruistic motive that Professor Baron Cohen describes.
Dr Temple Grandin, autistic, author and the designer of one third of all the livestock-handling facilities in the United States tells a story of a young man called Tom McKean in her book Thinking in Pictures.
‘(He) became frustrated ...... because the professor flunked him for finding a better way to write the program.’
She goes on to say ‘A more creative professor would have challenged him (Tom) with more interesting and difficult program writing.’
Gary McKinnon’s biggest crime may well have been his ability to make the computer defenses of the US Government look stupid. It is purely arrogance on their part to choose a vulnerable, naive yet genius of a man to make an example of. He has not been the only person to successfully ‘hack’ into their computers and other prosecution and extradition attempts may yet follow.
What can the rest of us, Autism spectrum people that we are, hope for? Greater awareness and understanding of the motives, passions and obsessions of the misunderstood race that struggles so much to find a place. Perhaps, if and when this is achieved, we can set aside our fantasy world and take thrones in this world, where our frequent mental and emotional maelstroms finally find peace.
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