Living with Asperger’s syndrome: ‘My daily experience is often just an extreme version of life’
This week Theresa May decided that Gary McKinnon (right) would not be extradited to the USA. Gary has Asperger’s syndrome, but what does it feel like to have the condition? Robyn Steward is an ambassador for the National Autistic Society, she shares her thoughts and experiences.
It feels as if my thoughts are on a series of cogs moving around in my brain, but it feels as if someone has been eating toffee near some of the cogs and now some of them keep sticking. It’s like when you have a piece of chewing gum on the bottom of your shoe, you only notice when you lift that part of the shoe off the ground.
One of the reasons I feel this way is because I am alone on a plane for 11 hours, albeit there are 300 other people on this flight but most will not understand autism. All my life people have thought I was weird, retarded or a freak. I am none of those labels. I have a type of autism known as Asperger’s syndrome, but I am first and foremost a human being.
My daily experience is often just an extreme version of life. I am stressed and cannot process what is going on around me in order. I do not know what to pay attention to, is the ache in my stomach insignificant or is it a appendicitis? I have to be vigilant to watch out for people talking directly to me. Events can also seem as if they are just miraculously happening rather then linking to each other within that context.
I find body language very hard to read especially when I am stressed, so I cannot use body language to know if I am being spoken to, and nobody knows my name so I am a bit stuck. If I get up to go to the loo I am worried that I wont be able to tell who is in the queue and who isn’t and then push in without meaning to. Now at least I could explain that I have Asperger’s syndrome but when I was at school I couldn’t and the other kids may not have understood, so I spent a lot of time being bullied, and believing I was a freak.
When I am stressed, my sensory system processes sounds too loud. It means that if I am in a room where there is a radio mic, I can hear the whistling while the volume of others sounds are not modulated either, so it can be distracting and hard work paying attention.
Every year I go on a self-organised speaking tour in the USA, the first time I went my Mum told me that she didn’t think I would be able to cope with the airport. She is right – airports are overwhelming but airports have structure and rules – you can get special assistance which means you get put in a wheelchair, and this means people understand you have a disability.
Since autism is a hidden disability most people do not know I am autistic. I find queuing very hard because it seems as though the queuing will be infinite and I am upset by this. I cannot reassure myself with an approximate time when queuing will be over, as it would be impossible to know. So I decided not tell my parents that I was going to L.A., San Francisco and New York. I had only ever been on a plane twice before because of the sensory issues I have when the pressure changes, which makes me think that my head is going to explode.
As you know American English is different to British English, but as someone with autism who struggles to read body language, social cues and doesn’t naturally see the context of a situation, it was important to learn how Americans spoke, and alternative words to make myself understood, e.g sidewalk rather then pavement.
There are a number of types of autism, collectively known as the Autistic Spectrum. But each person is different, and you need to learn what is important to them, for example do they take things literally? Do they need you to write down instructions rather then speak them? Do they need ear plugs?
Some of the most successful people have been on the Autistic Spectrum, such as pop star Gary Numan, Mozart and Einstein. It has its challenges but autism essentially is a cluster of extreme human behaviours and experiences. It is a neurological condition meaning that the brain is wired differently. The impact someone has on the world does not have to be about scale but about the effect on the people around that person.
For more information about autism and Asperger’s syndrome visit www.autism.org.ukTagged in: Asperger’s syndrome, autism, gark mckinnon, theresa may
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