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> > > Hope Whitmore asks for stories from people with autism

15 January 2012

By Hope Whitmore

black and white photo of hope whitmore

Photo of Hope Whitmore

Everyone knows what it’s like to feel anxious in a social situation, to be unsure of what to say or frightened to talk to strangers. However these are fears which a lot of people can overcome thanks to an innate instinct for communication, the confidence they have gained from years of doing ‘okay’ in social situations. This is different for me. At times I confused by or do not understand body language:

Is the person I am talking to getting tired of the topic of conversation? Are they perhaps cross?

I often feel that I cannot tell. This creates a constant state of social anxiety, of self-doubt and of low self-esteem.

I am on the autistic spectrum. I am also a very social young woman with a good group of friends. Some people may view me as ‘normal’, medical experts in autism label me as ‘neuro-typical’, yet I can be inhibited by anxiety in social situations, especially if the people I am with are unfamiliar. Sometimes I feel, off key.

Sometimes I wonder if I am unique in this feeling. Sometimes I wonder if everyone feels this way at least some of the time?

Francesca Happe, a Professor of Cognitive Neuroscience and a leading expert in autism, told me that it is characteristic for many ‘high functioning’ people on the autistic spectrum to live in a constant state of fear, worry and anxiety. Francesca tells me that one girl she knows ‘constantly feels a knot in her stomach like she is just about to have an exam.’

I first met Francesca Happe when I was a child of eleven or twelve and my parents were seeking a diagnosis for me as I entered a difficult adolescence. I remember her as kind and warm, and when I met her again, several weeks ago, these impressions were reinforced. She told me that as a child I had difficulty recognising facial expressions, particularly anger and disapproval, but instead of making me oblivious to these feelings, it instead made me more acutely aware of them. I was constantly asking:

Are you angry with me? Have I done something wrong? Do you hate me?

These questions are common, and it can cause a massive lack of confidence. It can also cause strong feelings of inadequacy. Although I may not know when I have done something socially ‘inappropriate’ this feeling leads to me to wrongly believe that I am socially inappropriate all the time.

While a lot has been written about autism there are still many misconceptions.

I’ve recently received support from Graeae Theatre Company for the background research of a play I would like to write called Off Key. A Play Lab is a research and development platform created for disabled artists. Play labs give writers time to explore specific questions in relation to their work. This is an opportunity for me to consider the reality of my experience in contrast to other peoples’ experiences, medical research, and pervasive social misconceptions.

I want to learn about and be able to identify the characteristics that many people dismiss, choosing to simply see them as weird, eccentric, or off key.

I’d like to hear from men and women with autism about difficult situations they have been in, and especially about the experience of ‘coming-out’ as autistic to those close to them, and the reactions they have experienced. I am open to all kinds of communication, stories and experiences. I hope that you might see this article as an invitation to start a real conversation that could potentially challenge some of the pervasive misconceptions that exist.

Please contact me by emailing hopewhitmore[at]gmail.com

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