Why I find the jigsaw puzzle symbol offensive

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?

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Having, being, and individuality

It’s been a very long time since I’ve updated, but today, at 5:30am, I feel suddenly inspired to write a post.

Firstly, I want to write about the whole ‘I have autism’ versus ‘I am autistic’ thing. I see a lot written about this – a lot of people on the autism spectrum are against using ‘have’, arguing that it implies that autism is something external to them, rather than being an intrinsic part of who they are.

While I have every respect for those who hold that opinion, and I understand the thinking behind it, I have found I continue not to mind ‘have’ for myself. I will happily say ‘I have Aspergers’. I prefer not to use ‘Aspie’, because, while I have no problem with others using it for themselves, I find to my mind it diminishes it into something cutesie and cool – some ‘in-club’, rather than an actual diagnosis. My overall preference is actually neither ‘I have Aspergers’ nor ‘I am autistic’, but ‘I am on the autism spectrum’. Not because of the ‘am’, but because it draws attention to the fact that it is a spectrum. And I prefer ‘autism spectrum’ to ‘autistic spectrum’ because, as a friend once pointed out, the spectrum itself isn’t autistic! It is merely a scale to describe autism.

As for why I don’t mind ‘have’, well, I like to study linguistics, and I observe that ‘have’ and ‘am’ really don’t have these very neat, black-and-white different meanings. They both can be used in a wide variety of ways. I can say ‘I am angry’ and ‘I have a calm disposition’. If I examine which of those is the one that describes who I intrinsically am, ‘I am angry’ tends to describe an emotion of the moment, whereas ‘I have a calm disposition’ describes how I am in general, and is far more defining. Many people use as a reason for ‘I am autistic’ the fact that we say ‘I am female’, rather than ‘I have femaleness.’ But I’d be equally happy for ‘I have femaleness’. I observe that while English uses ’am’ to desribe age (‘I am 30 years old’, for instance), French uses ‘have’ – ‘j’ai 30 ans’ (I have 30 years). And both mean exactly the same. While there is part of me that wishes the verbs ‘to be’ and ‘to have’ were less messy, less ‘all over the place’ in their meanings and usages, I don’t think realistically that could ever be the case. So, for myself, I’m happy to say ‘I have Asperger Syndrome.’

I think this is important to point out, not to undermine those who are not happy to say that – their preferences should of course be respected – but to illustrate that we are all different. There is no archetypal autistic person, just as there is no archetypcal neurotypical person. While we have in common the way that our underlying brain ‘wiring’ works, we are still (of course) all very different in temperament, interests, preferences, etc. I really can’t emphasise this enough – it is so frustrating to meet someone who happens to know someone (or several people) on the autism spectrum and assumes from this to understand me and know exactly what my preferences are! ‘Oh, you don’t like hugs then’ is a very common reaction when I tell people I have Aspergers. Actually, I love hugs – if they are from someone I know and like and trust, and if they ask before hugging me, so I know to expect it. Yes, some people on the autism spectrum like hugs. The most important thing is never to assume. Ask the person.