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?

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.

Sensitivities and food intolerances

I’ve decided in this entry to answer two questions which are sort of related:

1. Do you have any allergies to metal? by Shawna

2. I’m really interested in your food intolerances: what kinds they are, when and how they occurred, whether you have some medicines that help, etc. And I’m interested if you can tell something about it in general, because I didn’t find any details, I just heard somewhere that malabsorption is a symptom of Asperger’s. by Noemi

Regarding metal, I am guessing that means if I touch or wear metal, as opposed to consuming foods with, say, iron in. I am not aware of any specific allergies, either in eating or in touching, but I actually find it very uncomfortable to wear anything hard, like metal, against my body. So I decided several years ago so stop wearing jewellery or a watch – not that I wore them very much anyway, but when I wore them, I was always uncomfortable. I also find it very distracting – if I wear a necklace, or a bracelet, I fiddle with it constantly. I don’t seem able to simply forget that it’s there.

I think this is quite common with the autism spectrum – it’s part of not being able to filter things out, and as a result being hypersensitive. I try to wear clothes that are comfortable and even – exerting even pressure on my whole body, as opposed to having tight bits around the edges. I also avoid wearing belts if I can – I prefer trousers or skirts that are elasticated.

Regarding food sensitivities, I do have quite a lot of them, although I’ve never had them officially tested. I tend to experiment to see how different foods affect me. I’ve heard that the safest foods – the foods that are the least likely to cause an adverse reaction – are lamb, pears and rice, and that it’s a good idea to start with those and then add other foods one at a time, to see how your body reacts.
 
I find it can be hard to keep track of, because my body has a lot more sensitivity in the two weeks before my period – a lot of foods then cause me severe abdominal pain. But, at that time, lamb, pears and rice are indeed okay, so I buy a lot of them! I find eggs and bananas and avocados are good too.
 
But there is a different sort of sensitivity that happens all the time – a more low-level type, that can easily get mixed up with other sensory sensitivity, because it has the same sort of effect. Things like my mind feeling fuzzy or overwhelmed or having difficulty focusing, my body feeling like it’s full of electricity, as if it’s buzzing and quivering inside. It’s taken me a long time to realise that this is affected by the food I eat, but I realise now that it definitely is.
 
I don’t yet have all the answers – it’s something I still experiment with to some extent. But here is what I’ve found. In order for my mind to feel calm and alert and focused, and for my body to feel calm and non-quivering, I need to observe the following dietary principles:
 
  1. Try to avoid food with artificial additives and processed food
  2. Eat a lot of fresh, natural food – such as fruit, veg, eggs
  3. Eat raw, unsalted nuts and soak before eating them
  4. Eat small portions

The bit about eating small portions is something I’ve come to realise only more recently. I enjoy the sensory pleasure of eating, and I can easily eat too much. I know it’s very common for people to eat more than they need – but my body and mind really do seem to function significantly better on a minimum amount. 

It can actually be hard for me to know when I’m full or when I’m hungry. This is quite common for people on the autism spectrum – to find it difficult to recognise bodily cues. As a child, for instance, I used to often not realise I needed the loo until I was about ready to burst, and then I would often wet myself, because it was too late. I learnt to simply go to the toilet at regular times, to avoid this happening. Often, too, it’s not until I’m sitting quietly writing my thoughts and feelings in order to process them that I realise I’m tired, for instance. I think this is to do with the difficulty the body has filtering things out – I feel everything. My body is full of sensations, so it’s hard to filter out which ones are meaningful, and what they mean. However, I notice that when I eat less, it’s much easier to identify when I’m hungry and when I’m full – my mind and body feel clearer, somehow.

I know I have to be careful saying this, because eating too little can also be harmful. When I say eating less, I don’t mean eating less than the body needs. For me, it’s been more a case of trying to work out how much my body needs. If I am feeling tired and weak, that is not a good thing. But I can feel tired in a different way from eating too much, so I need to find a balance.

I also find it helpful to occasionally have a day or two of fasting, or eating only fruit and veg. This might be seen as strange, as it’s not a common thing in our culture, but it’s something that has been done traditionally in various cultures and religions, and I notice that it gives my body a rest and helps me sleep more deeply, so it is something I like to do occasionally.

People on the autism spectrum can have difficulty with sleeping. I find I sleep very lightly, and can wake up just as tired as when I went to bed. However, when I eat simple, natural food, and eat small portions, I sleep a lot better and am more refreshed when I wake up.

I know that it is quite common for people on the autism spectrum (especially children) to have a gluten-free diet, and sometimes casein-free too, so I should say something about this. My diet is not gluten-free or casein-free. I tried gluten-free once, a couple of years ago, just to see if it would help. I didn’t do it for very long – only a month or two – but what I noticed was that I was still getting abdominal pain with the gluten-free processed foods, and that I didn’t like the texture of gluten-free pasta, and that in general, I found myself feeling grouchy and irritable. I didn’t feel more well or more alert or anything like that. And I found it quite exhausting and depressing to be checking everything I wanted to eat to see if it had gluten in it. Perhaps if I’d done it for longer I might have seen good effects, but I have actually found much better effects on my well-being by simply eating simple, natural foods, including some food with gluten, such as pasta and bread. I am not of course saying my experience will be the same for every autistic person – I can just report on my own experience.

Regarding casein, I actually cut out milk from my diet years ago, simply because I never liked milk, and so it occurred to me in my early twenties that now I was an adult, I didn’t have to drink it any more. And I observed I felt a lot more well in myself once I cut milk out of my diet. However, I continue to eat cheese and yogurt, and have never observed any bad effects from them. I find yogurt helps my digestion, and as for cheese, I simply love cheese.

Something that helps me when I get bad abdominal pains from food is to drink hot water with a couple of drops of peppermint oil. I regularly buy little bottles of peppermint oil from Holland and Barrett.

I have actually started another blog, over on ‘Blogger’ (I wanted to try a Blogger blog, to see how they compare to WordPress) about my attempts to eat simply, and to live simply and frugally. It’s still very much in its initial stages, and is probably more useful to me than to anyone else so far, because it’s helping me track the food I buy and what I eat, and experiment with what works and what doesn’t work. But if anyone’s curious to have a look, the link is http://simplicityandsolitude.blogspot.co.uk/.

As you will see, I don’t always stick strictly to my own rules – I do eat processed food sometimes, especially when it’s on special offer. I find it hard to stick very strictly to a very simple, natural diet. I love crisps (potato chips), for largely sensory reasons, and I’m very aware they don’t have a good effect on me, so it’s a constant struggle for me. Therefore, I try to be a bit flexible in my diet, and not too strict, because I know from experience that if I’m too strict with myself, then I’ll end up rebelling and eating lots and lots of crisps! So I try to be realistic too.

Thank you – and invitation for questions

I would just like to write a quick post to say that I have not abandoned this blog. I’m aware it’s been eight months since I updated, and it seems like the longer I leave it, the harder it is to update. I have so much I’d like to write about, but I have found it hard to find the energy and focus, because my life has been very busy and full of change lately.

Thank you to all who have left comments. I really appreciate knowing that people have found this blog useful, and  feel surprised and grateful that people are still reading this blog when I haven’t updated for so long. This make me feel very motivated me to keep writing. I have several topics in mind to write about at some point, but right now, because I want very much for what I write to be relevant and helpful to those reading, I would also like to invite readers to ask any questions you want to ask, or suggest any topic within Aspergers you want me to write about. I’ve not done this before, so I’m not sure exactly how it would work, but, depending on the response, I might write an entry where I post people’s questions and try to answer them, or devote an entry to a topic that someone wants me to write about.