Oddly enough, M.E. and Asperger’s Syndrome have some overlapping symptoms. Some of these include, for example, a sensitivity to sounds and bright lights, sensory overload and food intolerances. Something else I’ve noticed is the tendency to tunnel vision and very specific interests. For the person with M.E., an extreme focus can be the only way to get things done.
Not surprisingly, another thing common to both is an extreme isolation. ‘Aspies’ often describe themselves as feeling as though they come from another planet. Eventually, this is bound to happen when you have M.E. It may happen suddenly or gradually, but sooner or later you will realise with a shock that every little facet of human life that you used to have in common with others – work, a social life, holidays, relationships, shopping, food – has radically diminished, or been stripped away entirely.
People with M.E. can potentially resume normal life, assuming that they are lucky to have a half decent doctor who will intervene with the right treatment in time, just as some Aspies are lucky enough to be able to function fairly well in society, or can reach that level with early access to therapy. The difference is in the resources available to Aspies as opposed to those with M.E. People with Asperger’s are regarded with interest by the medical community. People with M.E. are treated with such contempt and hatred that many are treated for PTSD. The fact that the majority of Aspies are men, and most people with M.E. are women, just might be relevant here, given that 19th century norms are somehow still regarded as relevant in medical practice.
Gender assumptions have also seen girls with Asperger’s ignored and marginalised because they didn’t fit certain Aspie stereotypes, leading them to grow up in fear and with cripplingly low self-esteem. (Researchers are now saying that the ratio of boys to girls with AS is likely to be in the range of 2.5:1 and not 10:1 as conventional wisdom has it.)
Low self-esteem and constant fear are words which ring painfully true for me. Tony Atwood says:
Boys go into attack mode when frustrated, while girls suffer in silence and become passive-aggressive. Girls learn to appease and apologise. They learn to observe people from a distance and imitate them. It is only if you look closely and ask the right questions, you see the terror in their eyes and see that their reactions are a learnt script.
The thing with me was that I was rather contrary because I had been brought up not to be ashamed of myself. Nevertheless, being in school was torture. I developed the habit of constantly saying “sorry”, schooled my features not to show emotion, and observed others to work out what was expected of me in various situations. However, I refused to change fundamentally. I would not adopt opinions or fake an interest in fashion or pop music even though I knew I was setting myself up as a target by so doing. I claimed the right to judge what teachers told me on its merits – which they hated. I changed from a happy, cheeky child to a silent, harassed one – but I hung onto myself somehow. My sister remembers an incident in the playground when one of my classmates walked up to me, out of the blue, and stated, “I hate you, Claire.” Apparently I looked at her coolly and said, “The feeling is mutual.” My younger sister thought of me as a kind of hero for dealing with the bully in this effective manner.
So which is worse – the physical isolation of M.E. or the social isolation of Asperger’s. I really cannot decide. Each have caused dreadful anguish in their own way. But after twelve years, the hurt of having M.E. has diminished somewhat, and the knowledge of having AS illuminates what happened in the past and allows me to get beyond it. In the end, living with AS, now that I have it rather than suffer from it, may turn out to be slightly easier – at least until doctors don’t sneer when I mention the term “M.E.”.
