Tomorrow is apparently the day of prayer for autism and Asperger Syndrome. I know this because I saw a slip of paper about it, with the jigsaw puzzle symbol on it. The slip of paper bothered me somewhat, for various reasons. Prayer itself doesn’t bother me – I have a deep faith in God and I pray. I find myself, however, a little apprehensive about quite what it going to be prayed. And the fact that the word ‘people’ doesn’t occur on this slip – is the prayer to be about the abstract concept of ‘autism and Asperger Syndrome’ or the people it affects? And is it prayer for elimination of autism and Asperger Syndrome, or understanding of them? Now I realise the desire some people have for a ‘cure’ is very controversial, and besides, different people seem to mean something different by it, and I don’t really wish to get into a big debate about that, because it’s one of those issues where I can actually see elements of both sides. And I certainly can’t presume to speak for anyone else, but personally, I’d rather be understood than eliminated. I’d rather be understood and accepted as a person who is a little different from the norm, but whose right to be here the world, to be myself, and take part in society in the way I wish is equally as valid as anyone else’s. I’d like to think this is what it is being prayed for, but I don’t know.
And then there is the jigsaw puzzle symbol itself. I know people don’t intend any harm in it, but am finding it increasingly offensive. As I’ve said before, it is ironic that when autistic people have difficulties understanding neurotypical people, we are simply pigeon-holed as ‘lacking empathy’, but when neurotypical people have difficulties understanding us, we are pigeon-holed as being ‘mysterious’. The deficit is seen to always lie with us. Such double standards are completely unacceptable. People quite rightly speak out strongly against the double standards in the way gay people versus straight people are treated, and the way women versus men are treated – memes fill Facebook about such things – but sadly the double standards in the attitudes towards autistic people versus neurotypical people remain largely unchallenged.
And even putting aside this double standard, labelling us as mysterious makes people lazy – we are simply seen as incomprehensible and strange, and people don’t bother really trying to understand us. ‘Oh, that’s just what autistic people do,’ I’ve heard people say about a certain behaviour, when I worked with autistic children and I questioned why a child was behaving in a certain way. The fact that autistic people often ‘do’ something doesn’t mean there is not a very rational reason behind it. I would argue that we are, in fact, incredibly straightforward. I hardly think anyone reading this blog could make a case for me being a mysterious jigsaw piece. I am a human being, same as all of us, who happens to have difficulties with multitasking, difficulties with organisation, and some sensory hypersensitivity.
To give an example – I’m sure we’ve all heard the stereotype that autistic people loathe change – that autistic people want to do the same thing over and over, have the same clothes, the same bed, etc. This is not looked into very deeply – it is not assumed to have any rational reason other than ‘Oh, autistic people hate change – they like everything to stay the same.’ With the subtext of ‘Yes, those silly, irrational autistic people! That’s just how they are – they’re somehow inferior and incapable of dealing with simple changes that the rest of us can easily manage.’ Now, I am currently in a position where I am living somewhere different, sleeping in a different bed with different bedding. And I am finding it incredibly different. You could write that off as: ‘Oh, that’s because autistic people hate change’, but let me first elaborate.
I have a lot of sensory hypersentivity. I hear very small noises, and wake up easily. Some noises are actually painful for me. I also feel labels in my clothes and they hurt me. I have spent many years making adjustments to my own environment to reduce pain and discomfort, and make it easier for me to sleep. Having finally found something that works, the thought of going through all that again is incredibly exhausting and disheartening. And this is a rationale that would be the same for everyone – autistic or non-autistic. If it took you a lot of pain and discomfort and effort – not to mention people deriding you and disbelieving you – to finally reach a simple state of getting your basic needs met, you would be very reluctant to have to change and do it all over again.
I don’t claim to speak on behalf of all autistic people, but I know quite a few for whom sensory hypersensitivity underlies their reasons for wanting to keep things as they are. And when I explain it this way, surely there is nothing mysterious about it. There is really no reason to see autistic people as mysterious beings – at least, no more mysterious than the rest of humankind.
For one thing, there are many articulate autistic people out there who write about what it’s like, in books and in blogs. I’ve noticed, even within the past year, a great increase in autism/Asperger blogs out there, and I feel greatly encouraged by that. But I wonder what it would take to get a significant proportion of the non-autistic world to read them. I notice for myself that the majority of my comments are from people who are also on the autism spectrum – who ‘get’ it, because they experience the same. It is a truly rewarding experience to have put something in words that others can relate to – but I also wish that more people who can’t automatically relate to it would read, purely with the motivation to understand. Sometimes I feel a little sad when I see the social media aflame with eloquent memes advocating women’s rights and gay rights, and nearly nothing on disability rights and awareness, and in particular autism rights and awareness. Except for the occasional meme with that wretched jigsaw puzzle piece on it, which really does nothing to promote awareness or equality at all. Am I the only autistic person who finds the symbol offensive? Is there not a better way we could be represented – one that doesn’t encourage a lazy ‘they’re just mysterious and we can’t understand their weird ways’ type of thinking?