NDIS NIGHTMARE KEELAN

We have cared for one of our grandson’s for 15 years. We finally thought things were looking up for him – BUT.  -today all that collapsed in a dreadful mess.  Funding that has helped him in the last 12 months to find his feet and begin to make a real life for himself has just been slashed!

Even money – totally inadequate as it was – that allowed us to get him to the bus has been discontinued.

 

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Hyperempathy, Autism and Creativity

Are there substantial links between hyperempathy – a condition of which I had not been aware of until recently – autism and creativity?  This is a question I want to address in some depth.  I have a personal interest in this issue because autism and related disorders affect so many of my own family.  Me included

It is nowadays well known that people diagnosed as being located on the Autism Spectrum vary in their personality types, their skills and interests, their aptitudes and behaviours in the same way that people who a ‘neurotypical’ do.  Or perhaps I should say this ought to be a well known fact. Sadly, there are far too many people who clump all autistic people into the same large unwieldy basket. It is an error that frustrates many of us who deal with the issues of abuse, bullying, disrespect and even contempt directed to themselves or members of their family on a daily basis.

Creativity and autism have been frequently recognised as being connected.  I want to take that one step forward, and look at how this relationship may/may not affect my own family. There has been a succession of women on my mother’s side who have been very creative, although not always successful.  There is also a long history of anxiety disorders, depression, feelings of personal and social inadequacy, clinical depression and alienation that shows up through 5 generations. This extends now to my granddaughters.

This pattern is not limited to the women in the family.  3 of my 6 grandsons have been diagnosed as being on the spectrum. Another has both verbal and physical dyspraxia. 4 of my grandsons – not all those diagnosed as having ASD but certainly including some – are extraordinarily bright. 5 have experienced serious bullying in the streets and in schools, both as children and as young men.  This includes occasional bullying conducted by staff in their schools/colleges. 1 of my 6 grandsons has attempted suicide, and very nearly succeeded.

Recently there has been an explosion of knowledge about the way autism expresses itself in females. For many years the seeming disparity in the ratio of males to females diagnosed as being on the spectrum meant that autism was seen as a ‘male’ disorder. This is no longer the case.

So you should be able to see why the issues I have set out below interest me so intensely. I am particularly focussed on the three articles I have linked to this post. The issues they raise tie in closely with the experience of my own family, and in future posts I will be examining them more closely.

Dana Fenton 06 /11/2014, Exploring Hyper Empathy Syndrome.  in  Emotional & Stress Management, Steady Health
Henry Markram,1 Tania Rinaldi,1 and Kamila Markram1,01/11/2007,   The Intense World Syndrome – an Alternative Hypothesis for Autism in Frontiers in Neuroscience
Sandra L. Brown M.A. 11/03/2012,  Genetic and Neuro-Physiological Basis for Hyper-Empathy in Psychology Today

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