Wednesday, 16 April 2014

On Asperger's and Sensitivity

The last time I posted I spoke very briefly about being an HSP mother. I promised to save that for next time. I've known that I was an HSP for a good many years, but recently my self assessment has changed. HSP stands for Highly Sensitive Person, and if you want to find out more about that then Dr Elaine Aron's site is the best place to go. 

If the phrase 'Highly Sensitive Person' sounds like it should be surrounded by daisy chains and auras perhaps it's because it often is. If I have to hear the words 'are you an indigo child?' one more time I may scream. I'm not saying all HSPs are like that, but you get an awful lot of it.

The perfect retreat - as long as they don't know I'm in there.
I am HSP. I have all of the problems of being HSP. The overly sensitive skin, hearing, sight. The intolerance for chaos and noise. The sensitivity to chemicals and insect bites. Ant bites turn into huge red weals. The last time I was stung by a bee I went into anaphylaxis. Then there's the social sensitivity. The need to frequently withdraw from other people and be totally alone. That's why I'm currently lying in a tent with a blanket over my head. The screaming and bickering of three small children is enough, but it's not just that that fills me up. It's the constant little nudges. The questions, the touches, the inability to go anywhere alone. The constant kisses that make nausea rise in me. The constant sensory stimulation is just too much. I start to feel as if my mind is spinning and coming apart. I want to scream and hit them away. Of course I don't. At least, I try to control it, although I can't promise not to snap.

But recently I have grown to realise that it was more than that. It's not just being an HSP. It's actually Asperger's Syndrome.

My problems in fitting in with other people go way back. I've always had few friends or no real friends. I can't say 'I love you' to anyone but children and animals - not without a great deep down questioning of what love is and if I really feel it. I can't sit in a room and talk to a person, even a close friend, without intense anxiety and self-reflection and analysing every sentence. I can barely talk on the phone. I constantly feel as if I'm missing social cues, misreading people's reactions, coming in at the wrong point or failing to come in at all. I go away from these interactions feeling drained and full of self-hatred for my inability to connect, to just do what other people do, and sit down and talk. I want to connect with people. I really do. It just doesn't work out. It's especially hard when every new place and situation sends me into a kind of shutdown, when visiting a place that I haven't been to before leaves me with intense anxiety and moving house makes me need to hide in bed for a week with physical weakness, diarrhoea, and an inability to think straight.

Often I don't know who I am.
I think I've heard every stock response since my self-diagnosis. 'You can't have Asperger's, you're too empathic.' 'I knew someone with Asperger's and you're not a bit like her.' 'You're just trying to explain your reaction to a difficult childhood.' Conversely I've had a couple of supportive friends - one with Asperger's herself who had suspected that I had it, another who is a learning disabilities nurse who suspected the same, another who read through the symptoms after her initial doubts and agreed, yes, that was me summed up on paper. These friends are like a balm and make me feel less like I'm losing my mind or being a hypochondriac. One of the problems with Asperger's is a lack of a sense of identity. If I watch a film or read a book or am exposed to a certain strong identity I take it on, chameleon-like, and so I am left constantly questioning my motives and from where my feelings have come. I worry that I am too empathic to have Asperger's, but empathy in Asperger's is a hot potato all of its own. There is a current line of thought, which seems upheld by most of the aspies I have met, that people with Asperger's actually feel too strongly, and so shut down and have difficulty in processing their emotions. We grow attached to inanimate objects even more so than bewildering human beings. This explains why I grieved for almost eight years about moving home, sobbed when we got rid of our broken television and settee, and still dearly miss the car we had when I was growing up. It explains why when someone comes at me with a hug or a kiss I feel as if I'm in the path of an oncoming train, and why I can't say, 'I love you' without deeply analysing what it means to love. Love is too important a thing to miscommunicate to someone who means the world to you.

It's extremely difficult to pursue a diagnosis of Asperger's if you're female and on the NHS (at least in this part of the country, where they just don't seem to have the resources.) Females with Asperger's syndrome are exceptionally good at coping mechanisms, it seems, at papering over the cracks and fitting in to a neuro-typical society. My case has been summed up as 'everyone finds life hard,' and dismissed because I'm a writer, capable, it seems, of empathising with my characters and using metaphor. Language is my 'thing.' It's what I do well - written down, at least. Spoken, it's a different matter. But all of the online tests agree. All of my contact with other people with Asperger's agrees. My resonance with their experience agrees. All the little seemingly unconnected things in my life agree with the traits set out for females with Asperger's. Reading Tania Marshall's highly detailed list of female Asperger's symptoms is like reading a biography.
Part of a series of earthenware figures I made as a teenager,
exploring loneliness, empathy, and family relations.

But what does all this mean for me? It means that things that aren't symmetrical make my brain itch and most of the time I wear no more than a t-shirt because clothes drive me crazy. It means that messages in my inbox go unanswered because the more important they are the more anxious I am to get the reply exactly right. It means that I don't see good friends for years because the thought of meeting up with them and opening up social interaction is terrifying. It means that I barely talk on the phone except to my family. It also means that often I am shut off and unaware of other people's problems. It means that when I am aware of them I am desperate to help them 'fix' it and get back to the status quo. It means that sometimes I say things that are too blunt or too focussed on solving the problem rather than simple reassurance. (If I give you simple reassurance it's likely that it's a learned habit. Coming from a family with deep mental problems I've had a lot of practice at that.) It means that I suffer from depression and anxiety and the urge to self-harm in order to get some control over my life. It means that I love my children dearly, but that I get touched out, overwhelmed, in desperate need of alone-time.

Not my most organised shelves. I mostly just love
the aesthetics of this.
It also means good things. Obsessions with television programmes and characters that have immeasurably improved my life and brought me many online friends. True it means that I spent a good portion of my teenage years having meltdowns at equipment failure when watching Star Trek, and that I have spent a lot of the past few years sobbing over the death of Peter Graves and the fact that my favourite character left the tv show Route 66, way back in the early sixties. But these obsessions bring me a huge amount of joy. Writing fanfiction taught me to write novels. Needing all of my dvds and cds to be ordered by alphabet and genre means that I can find what I want when I want it. I don't lack things to keep my mind occupied because I have to watch every episode of my current obsession in order, or I have to read every single book on the latest 'have you read this?' list regardless of personal taste. I like to answer questions and find out as much as I can about the world. I see things at a different angle, and I feel that I see them better for that.

Having some kind of diagnosis, albeit a non-professional one, has helped me to make sense of my life. It's made me feel like less of a broken human being. When my sympathy span is short if my children have hurt themselves I know it's not just because I'm a despicable human being. When I need to get away from the touching and kissing it's not because I'm cold. And when one of my sons has his own meltdowns over the wrong trousers or being misunderstood or a hundred seemingly insignificant things I can understand that it's probably because this runs through the family (I can see it in various family members) and he's not just being precious. He has real, valid fears and concerns. For the first time in my life I have a connection with people who think and feel like me and understand the issues that I face in life. The hardest thing is being 'out' to people who don't believe that I'm right about myself. The best thing is being 'out' to those who do.

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