I have a history of psychiatric disorder – anxiety and depression – that did not respond well to the usual treatments, until a psychologist (thank you, Daniel Flynn) proposed a diagnosis of Asperger syndrome. This is a part of the autism spectrum and came as a surprise to me because I thought I knew what autism was, and I have relatives with a diagnosis. Asperger syndrome provided me with an explanatory framework that suddenly made sense of so many aspects of my current life difficulties and of my life history, an explanation that has been a blessing.
I, like other people with autism, have impaired communication skills (including reading other people’s body language and clues like their tone of voice), impaired social skills (it is hard for me to make and to maintain friendships) and impaired social imagination (I am excessively attached to comfortable routines and my own intense interests). These three, highly medical, impairments define ‘autism’, but of much greater importance to my life is that I am very sensitive to distracting noises and distracting visual textures, and my life is driven by anxiety and my efforts to avoid anxiety – including avoiding social settings. Some of these parts of my character and neurology mean that I cope well with some situations and yet have immense difficulty with other, similar-looking situations. For instance, I can deliver a prepared lecture in front of an audience, but an evening of unscripted social interaction at a party can take a couple of days to recover from. I can concentrate on a task for many hours to the exclusion of everything else, but get so distracted by lights and noise that I leave shops without buying anything. I would never intentionally hurt or offend anyone, but occasionally make inappropriate comments or jokes without realising their impact on other people.
People with autism ‘look’ normal, so our problems create invisible disability. Subtle differences from ‘normal’ sometimes result in unconscious hostility, and because the hostility towards our differences from expected behaviour is felt at a subconscious level, it discomfits others. We are more often the targets of verbal and physical aggression, whether that comes from merry-makers outside bars, or from authority figures. We were the first to be picked on by bullies and over-zealous teachers at school and we remain the targets of angry people in crowded places, or of grumpy airport security staff on bad days.
The pressure to conform and to maintain social relationships takes a huge conscious effort – we don’t feel situations and relationships intuitively, but have to work at them. We think through situations and try to anticipate and rehearse all the possible outcomes, but real life never follows any script. We try to understand motives when people’s behaviour and words don’t seem to match, even when there was no motive (leading to some unfortunate and occasionally hilarious misunderstandings). The consequences of trying to second-guess people and their behaviours are constant anxiety, mental and physical exhaustion and depression. The fear of rejection is constant, based on both the real experience of past hurts and the perceived alienation and exclusion from ‘normal’ society. Mental illness is very frequent amongst adults on the autism spectrum and may be diagnosed before autism is ever suspected. Approximately two thirds of adults with autism are treated for depression or anxiety, with psychosis and obsessive-compulsive traits being commonplace. A lot of the character of people with autism naturally includes unusual thinking patterns and repetitive thoughts and behaviours, so there is nothing to treat in most cases and there is a risk of inappropriate drug therapy.
Since ‘coming out’ with autism, many people with autism or who live with people with autism have related similar experiences of the world. Some parents have told me that my explanations of my own experiences and behaviours have helped them to understand the behaviours of their own children, which had been puzzling or frustrating because their children (of all ages) could not articulate their own experiences of the world. Despite the wide range of the autism spectrum, many elements are a shared experience.
‘Aspect’, the A.S. Support Service in Cork, has been incredibly supportive in understanding the diagnosis that I have been given. They have provided a range of services that have helped me recognize difficulties that result from autism (and just as importantly, distinguishing other difficulties – the kind that everyone has – that do not result from autism). Identifying distracting noises, lighting and smells has helped me recognize when the anxiety that I feel in shops and other public places is purely an emotional response to the physical environment, and not based on the people around me, or on hostile attitudes towards me. The world has actually become a kinder, more tolerant place to move around in.
And yet every human craves human contact and human validation of our existence and our achievements. No pet, hobby or intense pursuit can ever replace a social network of some form. As the poet John Donne wrote:
“Everyone is a piece of the continent, a part of the main. If a clod be washed away by the sea, Europe is the less.”
People with autism need social contact just as much as anyone else, but the social awkwardness and pain of intense human contact drives others away and prevents us from making and maintaining friendships. Many people with autism are intensely solitary, and yet they often gravitate towards the places where there are other people. Sometimes just sitting in the same room is enough.
Stuart Neilson lectures in the new Certificate in Autism Spectrum Studies at University College Cork and is a co-author of “Living with Asperger syndrome and autism in Ireland” (available from amazon.co.uk/dp/1493537199)