This post is in the Autistic Spectrum Disorders category

Wrath - Zen Zen Zo, Those with Lucifer © M. Roberts 2004

Wrath – Zen Zen Zo, Those with Lucifer © M. Roberts 2004

“Bionic” originally from Steel Flesh – Zen Zen Zo 1998

Dear Reader

Dealing with a label of a mental disorder does not happen in a simple, single moment. Apart from dealing with a diagnosis in my family, suddenly I’m dealing with one in myself. Something that affects how I know myself, who I consider myself to be. I have lost my self and must come to terms with a new one – but one that was always there. There is too much written to review concerning the loss and grief one feels when a child is labeled as somehow imperfect, or when a person must come to terms with their own mortality through terminal illness.  I believe that it is grief that I have been going through for the past several years as I put on my label and examine how or if it defines me.

Elisabeth Kübler-Ross (Ross, 1969) defined five stages of grieving – Denial, Anger, Bargaining, Depression, and Acceptance. She indicates that the order and depth of each is not set, but anyone experiencing grief will go through at least some of these. The paragraphs below are taken from my reflections over several years as I come to terms with the event of my diagnosis, and particularly the concept of residual traits. They seem to say  something for the stages of grief.  They are presented in chronological order

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Early 2006

Here I am, at the age of 39, receiving (attaining, discovering, being gifted with) a diagnosis of Asperger’s Syndrome in residual form. There are a whole raft of “deficits” to come to terms with according to the official criteria, but there are also “assets” compared to a neurotypical person including strong discrimination of detail, ability to lock into a topic or activity, logical responses rather than emotional ones, above average intelligence, good facility with systems and a strong ability to analyse and see patterns. Seems like a positive spin anyway. I’m not really sure what all this means yet, it’s going to take some time to sink in and make sense. Asperger’s is sometimes referred to as “Wrong Planet Syndrome” (Jones, Zahl & Huws, 2001, p. 396) because the unwritten rules and non-verbal nuance of social interaction can be a complete mystery – rather like a culture shock that goes on forever. I can relate to that OK, I certainly feel like a stranger in my own life half the time. It all seems somewhat detached from my reality. I can see the traits in me and I can also look back and find situations (many of them) that I could probably blame on Asperger’s Syndrome. But I don’t really get what it means.

Neurotypical by the way, is a term coined by autistic persons as a response to the “autistic” label, and was initially intended to be somewhat derogatory or tongue in cheek. The term is now widely used in scientific literature as a description of a “typically developing individual”, much to the amusement of those of us who get the gag. As many persons with autism hate being placed in a defining box that seems to limit individuality, the opportunity to lampoon normality is often too much resist. There is a website dedicated to the “study of Neurotypical Syndrome” and the forums abound with references to SFND – Stupid Fucking Neurotypical Disorder.

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Early 2006

I sought advice from a clinical psychologist and the diagnosis of Asperger’s Syndrome in residual form was confirmed. The residual part of this is important because it means that the symptomology is fully present but that I have developed sufficient coping mechanisms and cognitive strategies that the condition may not be obvious to an untrained observer or be a problem most of the time. An analogy is that of someone with full vision in only one eye learns to drive or catch a ball because the brain learns depth perception by means other than stereoscopic vision. A different part of the brain to normal is involved. Nonetheless, the condition persists and its affects may become heightened under various conditions including stress. In my own case it means that most of the time I manage quite well thank you – although by different means to most of you – and it helps account for the discrepancy between how I perceive myself, and how others see me. In fact these coping mechanisms and cognitive strategies are the key to my research. If I can tease out exactly how I do the things that neurotypical people do by intuition and empathy, I’ll be well on the way to being able to suggest how others can do it, or how educators might assist.

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May 2006

Last week I attended a three day conference, the Biennial Australasian Autism Conference held at the Gold Coast.  I travelled 2 hours each way on the trains, leaving home at 5.45. The trains gave me some reading and thinking time.  The first day I was very anxious, particularly about traveling, catching connections etc despite having worked it all out several weeks ago.  In the end that part of it went without a hitch.

From a personal perspective the conference brought some very challenging points to light.  Firstly I was keenly aware of levels of anxiety, particularly surrounding uncertainties such as traveling, catching train connections etc.  I noted that virtually all present were either on the spectrum or strongly familiar with ASD.  It quickly became apparent that I did not have to work nearly so hard in order to belong or to join a conversation, or socialise.  It seemed as if my natural awkwardness was completely tolerated.  With this observation, I found I largely dropped my guard and allowed myself to just be me. I seemed to find myself almost out of body – watching from a little distance.  I began to wonder if the this me is the real me?

  • I saw myself hovering around conversations wanting to join but not knowing how, and then being invited in. These people knew I wanted in – because they are used to folks not knowing how to do it.
  • People told me what they were thinking more directly than usual, there is less reliance on the non-verbals
  • I caught myself “rocking” when uncomfortable. I see others doing the same. It is therefore OK if I do…
  • I was nowhere near as exhausted afterwards as I usually am after conferences / large gatherings
  • I am more aware of sensory overload and how I deal with it – by shutting down visual and aural inputs and narrowing the focus of both.

Previously I have felt that the diagnosis might be wrong. I rationally recognise the signs and the symptoms and the traits and the phenotype and the spectrum of impairments but it’s all been rather academic. Today I feel like I can accept these things in myself in this environment. Someone told me – “you know you really are Aspie when you realise how comfortable you are with other Aspies.”  It’s not a welcome thought, but I do feel comfortable with these other weirdos – the are like me. But I think I’ll get sick of their company soon enough. A lot of them are victims of their own anger with society. A lot of them want special consideration for everything. A lot of them are NOT LIKE ME.

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Late 2007

I might be talking myself into the Syndrome. I’ve been reading so much about it and analysing every moment of my waking life. Every tiny thing has some relationship to this thing called autism. I am constantly on edge, on the lookout, that I wonder if I’m getting more and more autistic on purpose. I asked my psychologist whether it is possible to do this and he said no, but that my Asperger tendencies had become more obvious. There is anger here – leave me alone and let me get on with it, why, why, why?

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August 2008

Yesterday I ended up in hospital. I thought I had a heart attack as did everyone around me. The kids watched me trucked off in an ambulance. The tests say it wasn’t a real one but it hurt. Badly. I’m scared that being Aspie might kill me.

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Mid 2009

My world is not what I thought it was. I don’t know what it is and I certainly don’t like it. There is no way out, only struggle and darkness. The family is happier and functions better when I’m not there. If I close my eyes and concentrate, ask God for help, I can just stop breathing, and then it will no longer matter.

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Mid 2010

Having been regularly visiting a psychologist and having treatment for depression for more than two years, I am now trying to figure out if having a diagnosis is a Good Thing.

Can I identify the influence of autistic tendencies in my work and life?

Absolutely…
Sometimes…
Maybe…

Does the knowledge help make my life better?  Well the jury’s still out on that one.

It is worth examining the idea of residual in relation to Asperger’s. My counsellor suggests that the term does not apply to me after all – at least, not at the moment. The measures of significance and impairment are of course still open for professional debate, but what is clear is that autistic symptoms come in waves, and waves seem to come in tides, and tides also have their cyclical zenith. The height of these waves are certainly stress related. It is also my observation that since diagnosis, and certainly while engaged in studying the subject, I appear to be somewhat less able to call on these coping mechanisms that define residual status.

I am certainly now able to recognise many of my “aspie moments” on reflection, but unfortunately not yet while they are happening. Recognition after the event and anticipation of the next has become a constant source of anxiety, stress and depression, which then leads to deeper expression of traits. It’s a vicious cycle. There are many times that I wish for my previous life when I firmly believed that I was right, that I was alright and my course of action was the only one available.   Those were days of certainty, days of blissful unawareness but also days of dubious life decisions, lost and unformed friendships and deep and frightening chasms of the mind that would occasionally demand attention and all my will to ignore. Now there is no certainty. My constant companions are four questions:

  • Am I perceiving this situation from a skewed, aspie perspective?
  • Am I allowing myself to be a victim of rigid thought?
  • Did I get the social context or did I misunderstand?
  • Which way am I going to screw up this time?

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