Autism – Don’t Fear The Label!

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Autism – Don’t Fear the Label

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“People are too complicated to have simple labels”

Phillip Pullman

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So many parents fear going for an official diagnosis for their child if they are potentially on the spectrum because they either ‘fear the label’ or are not prepared to ‘accept the ‘label’ emotionally.

In 2008 l was officially ‘labelled’ by a member of the private medical profession as an Aspergian who had Asperger’s Syndrome. Did l mean to say labelled there or should l have used the word ‘diagnosed?’ Who knows l guess, each to their own interpretation and translation of what actually occurred. I had been recognised by friends as being on the Spectrum the previous year.

They genuinely thought l knew l was an Aspie, and not bothered by it. I didn’t know. I hadn’t even thought of my quirky behaviour as being spectrum driven, just quirky. In fact l, yes l was one of those people who when they paid mention to it, tried desperately to bring up any landmark comparison and all l could conjure up was Rainman as my only actual example of autism. Were they saying that l was some kind of savant?

Throughout all of my lives till that ‘diagnosis’ l had received an assortment of labels some quite derogatory awarded to me by not just friends, but by the medical profession, work colleagues, associates, societal thinking and behaviours and by my own family. I personally used to joke that l was KKKrazy but at least l had certification to prove it and by this l was referring to my time spent under counselling and a couple of visits to the local psychiatric units. [Yes back in the 90’s they were still as bad as you think!]

I had reason to visit these units because of misdiagnosis and indeed mislabelling, and my story does not stand alone, so many diagnosed ‘autists’ of my age bracket had a hard time growing up with so very little qualitable information and data out there about the spectrum. I am fifty four and l was successfully awarded my title when l was forty four. I have held the right ‘identity label’ since then. It took me personally almost five years to ‘accept the label’ – it was a long road of self-discovery and understanding and comprehension as well as an incredible amount of deep research into Autism.

However when l say ‘accept it’ it was not a case of disbelieving or fighting it, nope. I did accept it into my life and l welcomed its presence – for it finally answered a lot of questions l had not just about me, but also my Father. Whom l believe is also on the spectrum – but he does not wish for the label to be added to him.

Why is that? Fear of course.

For my Father specifically, it is very much fear – the fear of being ostracised for being seen as different. Having spent most of his years hiding his at times very strange behaviours, but equally having almost a devout hatred for those who are different in any way, shape or form. To further explain – if you are in my Father’s eyes different to what he classes as ‘normal’ then you are in fact a misfit.

Perhaps like me you can see the irony here? Here is a man who without a shadow of a doubt is on the spectrum and yet to admit to such would in his eyes admit to being flawed, imperfect … quite a conundrum eh? [And yes, growing up in my household as a kid was FUN ….]

NOT!

Fear is a dreadful emotion to some, whilst many others regard it as healthy – as it means you are at least alive. But those four little letters combined the way they are too many eyes spell out a mixed reaction of threat, anger, pain and or harm. Of manipulation, of bullying, of danger and of course let’s not forget change. So we can see why many parents even today would ‘fear the label of autism for their child’ equally as much as say a non-autistic person may fear the spectrum itself. I know people who do fear autism, as much as they fear those on the spectrum.

I promote Autistically Aware because l believe in the benefits and positives of autism and to not dwell on the negative impact many believe it to be. Others live by and support Actually Autistic which as you can guess is those on the spectrum who are ‘actually autistic’ fighting the fight and hopefully paving the way for the young of today for their tomorrows.

But as the quote above suggests people are way too complicated to have simple labels and this is true – everyone wants a label of their own –not just those of us on the spectrum – but everyone wants to be different to the next person, they want to be unique. The preferred state is to be extraordinary in comparison to simply being ‘ordinary’ and yet having said that, again ‘fear’ rears its ugly head, because to be out there with your own label actually promotes difference to what society classes as normalcy. People fear the rigid confines of society yet fear even more the label of being quirky or unusual’ or rebellious or revolutionary – people fear – fear itself.

As individual as people may wish to be, they are more afraid of those who are stand out from the normal defines of behaviour. I would say in defence ‘Please define normality’ because how does anyone hand on heart know and understand what is correctly defined as normal?

Society deems what is acceptable practice, and autism in our example is deemed as ‘different’ and challenging and going against the grain.

Since my diagnosis and finally being awarded the label of an Aspie, l have seen changes. I have seen people look differently at autism’, they no longer specifically think of Raymond Babbitt from Rain Man but hold a varied assortment of mixed emotions about the very word – autism.

We have still got a very long way to go as far as being autistically aware stands, but with the positives of the likes of actually autistic – the word autism is slowly starting to become part and parcel of everyday life and as such the apprehension of the label is dissipating.

Guy or Bloke, Your Choice

These posts represent my views of my Asperger’s, my autism and may not be the same as others on the spectrum.

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