My interest in Autism Spectrum Conditions (ASC) started, bizarrely, at an early age. I have always been fascinated by the human brain and how one, ugly mass of unidentifiable 'stuff' can cause us to think and behave so, incredibly differently. The idea that colour, sound, taste and smell do not, really, exist outside of our brains and do not, therefore, really exist at all is enough to amuse me for hours. From a psychological perspective, ASC is particularly interesting, and so, one nerdy little book about ASC led to another and soon, I had sufficient brain fuel to lecture just about everyone I knew on the magic of the spectrum.
The problem is, ASC is not just something in a book: something to be studied and analysed. It is a real life condition that, for some, can make daily functioning incredibly difficult. It is a way of experiencing the world, characterized by a distinct way of thinking and processing information that can, in many cases, lead to behaviours deemed to be 'outside of the norm'.
And it is that last bit that I most want to talk about - the thing of which I think people need to be most aware. Over time, my knowledge and understanding of ASC has progressed from going beyond the mere contents of books to my own, personal experiences. I have seen more than one person discover, for themselves, that they are autistic, having spent their entire lives finding life harder than most and, in some cases, tripping in and out of CAMHs with no answers as to why they can't just be happy. I've watched people I care about go through true Hell, all the while wondering at just what point it is both safe and acceptable to suggest that maybe their brain is wired just a little differently and I've seen people be referred to as 'weird' when, clearly, there is something a little more intrinsic going on.
Most importantly, I have come to recognise that ASC is not an obvious condition. Sure, it can be non-verbal, aggressive and complex with high sensory needs and next to no receptive language but it can also be subtle - sometimes, even, invisible. It is not just a set of behaviours: it is a way of thinking and not one of us can be so arrogant as to assume that we know what everyone is thinking all of the time. The fact that someone behaves in ways that we deem to be 'normal' does not mean that they are thinking the same things as everyone else. If we assume that people understand every situation in the same way as us, we risk isolating them behind a wall of confusion and fear that, over-time, builds up to a really very unpleasant experience of the world.
Many people, professionals and ordinary members of the public, are gaining an increasing awareness of ASC, its existence, its traits and its prevalence. But what many people are failing to realise is that ASC does not, necessarily, look or behave in a certain way and that, no matter how 'normal' someone seems, their thoughts and mental processes are what truly dictates whether or not they are on the spectrum. It is, therefore, impossible to know if someone is autistic unless we have a really deep, honest understanding of what goes on in their head.
This is important for so many reasons. In the first instance, so many people, in schools especially, aim to 'support' those with ASC by simply trying to normalise them. They identify the behaviour that does not fit in with everyone else and they do what they can to change this. But, if the workings of the mind remain the same, no good can come from forcing someone to eat with their food touching or making someone take on more information in a shorter space of time: the forced behavioural changes can only lead to further distress.
Secondly, when it is suggested that a child or individual may be on the spectrum, many parents react with outrage, greatly and severely offended by the suggestion. This is not only deeply, deeply offensive to many of those who treat their Autism as an integral part of their identity - and an impressive strength - but is completely unreasonable: your child does not have to be non-verbal or display extreme behaviour in order to be on the spectrum.
More importantly, we seem to have a genuine fear in our society of 'labeling' people. Even when professionals are entirely certain that a child is on the spectrum, there is a clear reluctance from multiple agencies, and parents, to pursue assessment because the outcome is deemed to be a red-card label. Whilst I would not be so ignorant as to assume that I can speak for the entire autistic population, I can say with certainty that everyone that I know, have met, spoken to, listened to or read who has been diagnosed with Autism completely disagrees.
For someone who cannot explain the way they think, who does not understand why they find daily functioning so difficult or knows that they are different but cannot identify how or why, the word Autism is not a label: it is an explanation. It is an identity, a reason and, for some, a personal justification. It is the reason to be a little more patient with oneself and a means of explaining to others how an individual's needs might be slightly different to those of others. It is not a debilitating diagnosis but a key, unlocking the door so self-understanding and, when needed, resources and help.
To know that Autism exists is great. To know what it means, what's involved and what we can do to help is even better. But awareness extends far beyond mere knowledge: to make a truly inclusive society, we need to understand just how subtle Autism can be and, most importantly of all, accept and respect it.
Find out more about Autism here.