Conversations

One thing that attracts me to blogging is the ability to have conversations that both reach out to others, and help to debunk some of the common myths and misperceptions of about Autism Spectrum Disorders.  I’m a little awkward at this –  I find typing to an unknown audience very odd, but I have in my mind that there is a real need to comment.  And to connect.

I’m going to quote a small amended  extract from correspondence I sent today.

Sometimes returning to the original meaning of a word can be useful.  I have used the term Autism Spectrum Disorders so frequently that I needed to refresh my understanding of the original meaning of the word ‘spectrum’ … here is the result.

Physics

a.  an  array of entities, as light waves or particles, ordered in accordance with the magnitudes of a common physical property, as wavelength or mass: often the band of colours produced when sunlight is passed through a prism, comprising red, orange, yellow, green, blue, indigo, and violet.

b. this  band or series of colours together with extensions at the ends that are not visible to the eye, but that can be studied by means of photography, heat effects, etc., and that are produced by the dispersion of radiant energy other than ordinary light rays. Compare band spectrum, electromagnetic spectrum, mass spectrum.

The point is that the spectrum itself is a complex and diverse array of disorders that overlap, that bounce off in all sorts of directions, and we are only really just beginning to understand it.  The individuals on that spectrum are as diverse as occur in those who are not autistic – and one of the difficulties for those understanding autistic people, and more importantly communicating with them, is the development of stereotypes.  We, unadvisedly, use stereotypes to explain things we don’t fully understand, sometimes because we fear them, and always because there is a significant disconnect.  And those stereotypes, whether positive or negative, diminish our ability to truly understand what it is that we are confronted with.

I’m as guilty of this as anyone else. My progression through my understanding of autism spectrum disorders has been a long one, one that commenced with trying to understand the odd and alienating behaviours of one of my own grandchildren, and one that has intensified since taking on the care of another grandchild who had a complete break-down at the age of 6.  Since the outset of my journey, 2 more of my grandchildren have been diagnosed, and to be honest, I suspect that others very well also be on the spectrum.  The differences in which these children have expressed the disorder are dramatic, and go a long way in the development of  my understanding of how diverse ASDs are.

Until recently, however, I have not been able to accept that I am probably – no, highly likely – to be on the spectrum myself. Until recently, I had been fooled by another stereotype, and this time one that must frustrate and do extensive damage. I knew myself to be over-empathetic, to the point where I find it hard to dissociate at all from other people’s emotions.  I become the person, suffer as they do, rejoice as they do.  How could I be on the spectrum, one so often typified by lack of empathy, despite many other of the traits that I had already identified in myself?

This week, in my reading, I came across ‘Autism and Empathy’, a website dedicated to debunking the very stereotype that had taken me in.  The stories of the people writing on this website not my story, but they allow me at long last to find a place where I connect, where ‘I belong’.  I do not agree with everything that is said. Some of my views are in fact very different. That is not the point. I feel in some ways I have come home.

So, while I cannot undo the past, and am only just beginning to understand my ‘present’, at long last I have found a path to my future.

I’ve pasted the link here for you here. http://www.autismandempathy.com/  It’s well worth a visit, in fact, it’s well worth visiting more than once.

Cheers

t E a


4 Replies to “Conversations”

  1. I think there is a real problem in trying to describe unusual mental states such as autism. But trying to put them in a box doesn’t seem to work. Our minds are basically chaotic. Naming the states is about order. There is a serious mismatch here. I think what you should be looking at is just going with it and treating any problems as the symptoms arise, as autism in its many forms can be incredibly creative and productive. It’s like driving a car without brakes. Try to stay on the flat and not collide with anything and you will survive. I would suggest that mental states should be classified more in terms of psychosis/neurosis. A neurosis allows you to continue to function, whereas psychosis is an illness that interferes with your daily life. There is a line here though it may be hard to define. Deal with the latter as the problems arise. If a person is manic, try ways of calming down, distraction etc. Go for walks, runs, whatever seems to work. Forget standard treatments. You are your own experimental laboratory. You are the one who has to live with it, so the only one who can really find the answer and have the courage to do it. Good luck.

    1. Hi Barb
      I can’t agree, although I do appreciate the thoughtfulness of your comment. My ‘trying to describe’ is in fact an exploration, and the only sense I can make of myself. Since my posting, I have once again been battling depression, depression that overwhelms and drags me further into the depths of despair. The great difficulty is that depression, when it is at its worst, cripples, alienates even further, and envelops me not in mist, but in a relentless quicksand that just seems to thicken the more I struggle. It is the true down side, the opposite of productivity. I cope by switching off from the world – I sleep, I cry, I retreat into repetitive game playing that appeals only to the fact that I can repeat the activity over and over again – it is the repetition itself that comforts. However, it is not ‘therapeutic’, just another way of cotton-woolling myself away from the stresses of a world that leaves me confused and struggling to make sense of it. I cannot read, I cannot write, I cannot be creative … I simply slip away, and let life flow along its path, leaving me somewhere behind, and totally out of touch.

      Anyone who has suffered from depression knows, so it seems to me, this state of ‘existence-only’, and only barely existence too. Life appears pointless, disconnection intensifies, and the ability to enjoy life at any level simply disappears. Anyone who lives with depression also knows that it is not a state that is welcomed, and it is not a matter of making a decision to do something about it which will start the healing process. It certainly makes it worse if you understand none of it.

      Yes, minds are chaotic. And it would be pure foolishness to try to ‘sort’ minds into rigid categories, because every single human being has a mind that is unique, that grows and flowers through that persons specific and uniquely personal experiences. But when the chaos fractures, and the mind begins to lose the centre that holds it together, then what? And doesn’t understanding itself provide a strong and firm hand to help pull you back into the world of meaning? It does for me.

      It is a dreadful illness, made much worse for those of us who struggle to make connection even with those who are closest to us. And for me, the constant internal chatter, the spiralling and spinning, repetitive thinking, the inability to free myself from sorrow, from inaction, and feelings of worthlessness, makes the illness at times almost impossible to surmount. Life becomes pointless, and day to day existence mechanical. The days flow colourlessly into each other, night and day merge, I can’t sleep at night, but I can’t stay awake during the day. And those living around me have to cope with a person for whom they care, but whom they are struggling to understand. My path to my understanding ‘me’ begins with understanding my ASD, gives me a tool to help them also understand me. And it then allows action which will not crush my creativity, per se, but release me, at least to some extent from the confusion which helps precipitate the fall ….

      I’m not suggesting that depression is experienced ONLY by those of us with ASD – and the spectrum itself is wide, and is a true kaleidescope, which makes each individual’s own experience also unique. What I am writing about is my own personal journey, partly because writing about it helps make sense of myself to me. But just as significantly, I write because I hope that by so doing I am connecting – and a connection needs at least two points of contact. It provides strength to me to know that I am not alone. It may allow others to see more clearly, and to connect with those of us who struggle to make sense of an at time senseless world.

      Cheers
      TEA

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