Someone else’s shoes: Living with Asperger Syndrome

 

World Autism Awareness Day provides an annual opportunity to shed light on a community of some 25,000 people in Wales who are often isolated, widely misunderstood and rarely celebrated for their contributions to society.

Indifference makes life difficult for the 1 in 100 people in Wales with autism and their families, who find that understanding of autism is in short supply amongst both professional groups and across wider society. One message dominates meetings of NAS branches across Wales: ‘People don’t understand what my life is like’.

Autism is a lifelong developmental disability that affects how a person communicates with, and relates to, other people. It also affects how they make sense of the world around them.

It is a spectrum condition, which means that, while all people with autism share certain difficulties, their condition will affect them in different ways. Some people with autism are able to live relatively independent lives but others may have accompanying learning disabilities and need a lifetime of specialist support. People with autism may also experience over- or under-sensitivity to sounds, touch, tastes, smells, light or colours.

Asperger syndrome is a form of autism. People with Asperger syndrome are often of average or above average intelligence. They have fewer problems with speech but may still have difficulties with understanding and processing language.

If this definition leaves you feeling a little underwhelmed, that’s because it doesn’t capture the rich detail of life with ASD.

One of the best ways to communicate what life is like with ASD is to contrast the ease with which most people go about their daily tasks, with the challenges faced by people with ASD.

The account below is based on a structured conversation with Mark (name changed), a young man with high-functioning autism from South Wales.

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Mark wanted to talk about a recent shopping trip.

‘I’d been thinking about this shopping trip for some time’. The two weeks have caused Mark ‘a lot of anxiety’, making Mark ‘sick in the stomach’.

Mark says he worries about people, ‘especially youngsters’, making fun of him. Mark doesn’t ‘act like everybody else’ and usually doesn’t ‘dress like them’ either. I ask if he’s been bullied or shouted at in the street. ‘Yes, they do it everywhere’.

Mark has been up most of the night ‘going over it all’ and after completing hours of detailed, precise routines for getting ready, he leaves the house. It’s exactly the same every time. ‘People don’t understand…routines help me a lot’.

Mark ‘hates queuing…because of the other people’. The anxiety increases once the bus has arrived even though Mark ‘has a bus wallet for bus fare’ he finds it ‘hard to listen to the bus driver’ and is worrying that he hasn’t got the correct money, despite finding out before.

Soon the noise on the bus with people chatting and children playing and laughing is overloading his senses. The noise feels like it’s piercing his brain and his eyes, its ‘almost unbearable’.

The bus stops and he gets up and gets off very quickly because he feels like he’s going to explode. He doesn’t see the person he has pushed in front of, he wouldn’t have sprang up so quickly if he had known ‘the rules’. Mark doesn’t read facial expressions and moods well: ‘This person is shouting at me, so I go’.

I ask if he thinks supermarkets are too busy: Mark gets animated: ‘there’s thousands of people!’, he feels every brush ‘like a push’ and the conversations are a ‘loud buzzing’ that attacks his senses. An anxiety attack begins as soon as he enters the shop: ‘going through my anxiety management…trying to remember my steps to find the toothpaste’

Mark walks up and down the aisles ‘for a good while’. A staff member kindly comes over to ask if Mark needs any help, he does, desperately, but he ‘can’t explain that to her’ and walks away as she talks to him. Eventually he finds the toothpaste section and the only brand he will use is in stock.

Shelves packed with bright colours, fridges buzzing, the glare of the shops lights: Mark says ‘it feels like the sides are closing in’. Mark pays with exact money and walks out. He goes immediately to the bus stop and sits down where he waits for an hour. Mark will ‘always take the 23 home’, despite alternatives.

Mark will ‘sit down for the evening’ and won’t leave the house for another few days, and it ‘may take a few days to recover’ from a very difficult day.

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This small snapshot of one young man’s experience of life with autism reveals just how vital it is that efforts to grow awareness of autism continue. If you want to find out more about autism, Asperger syndrome and the help and support provided by NAS Cymru, visit www.nas.org.uk./cymru today.

 Neil Ingham is External Affairs Manager for The National Autistic Society Cymru