Autism – Don’t Fear The Label!

Post Revisited, Reedited, Reworded, Reblogged From Mar 23rd 2018

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Autism – Don’t Fear the Label

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“People are too complicated to have simple labels”

Phillip Pullman

Currently in the UK 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 coin the phrase ‘labelled’ there or did l mean diagnosed? Well l was diagnosed, and Asperger’s was the label awarded to me. Matters not in my books, the label is for me, so l could relate to who l was officially. That is as far as the label goes. I don’t like labels in every day uses with diagnosis, because we are all different, simples.

I had been recognised by friends as being on the Spectrum the previous year.[2007] 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 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 six 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 and my Autism. Of course when l was diagnosed, l was just told l was Aspergic, because at that time, Asperger’s and autism, had not yet been umbrella’d together.

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 late Father. Whom l believed was also on the spectrum – but he did not wish for the label to be added to him.

Why is that? Fear of course!

For my Father specifically, it was 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 he considered different in any way, shape or form. To further explain – if you were in my Father’s eyes different to what he classed as ‘normal’ then you were in fact a misfit.

Perhaps like me you can see the irony here? Here is a man who without a shadow of a doubt was 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 to 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 – 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 do 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 my label of 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.

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10 thoughts on “Autism – Don’t Fear The Label!

  1. Thanks for this. I’m so glad to see an esteemed blogger outside of the autistic community write about their autism/Asperger’s diagnosis. I was diagnosed in 2007 at age 20, but I can relate to your experienc eon some level.

    By the way, this may be a stupid question but why do you write l instead of I (I as in yourself) each time? It is hard to read because I use text-to-speech.

    1. You are not wrong there. Plus it’s got harder. When they decided to group everything under the spectrum’s umbrella, they said at the time DSM – 5 was published it would make diagnosis easier in the UK. If anything, it has made it a lot harder. At least here for Asperger/Autism we don’t have to ‘technically ‘ pay for NHS diagnosis unlike those seeking a dyslexia diagnosis – but with the NHS the way it is – trying to get one is way harder than many might think. The emphasis is now mostly on children, and adults struggle to get it.

      Also with the way the new administrations for identification changed, l sometimes wonder as autistic as l am with my Aspergers if they would even find me on the spectrum, it’s all very frustrating.

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