I know it’s been a very long time since I’ve updated – not that I haven’t wanted to, but it’s been a mix of the usual autism spectrum difficulties of difficulty multitasking when other things are going on, difficulty switching from one task to another, difficulty getting organised. I have been tweeting now and then though – Twitter is easier, somehow. You just pop in and post very short updates. And Twitter is what I want to write about here – or rather the very specific autism spectrum hashtags that have really been taking off lately.

First the autism community were boycotting the #AutismSpeaks10 hashtag – while Autism Speaks is celebrating its tenth anniversary, the autistic community were drawing attention to the fact that Autism Speaks actually doesn’t give them a voice, and constantly portrays autism as a terrible tragedy, using outdated stereotypes and attitudes which are very harmful in terms of how society sees people on the spectrum. So we were posting giving our perspective, using the #ActuallyAutistic hashtag. As we were posting our tweets and retweeting other people’s tweets, we started to develop a sense of solidarity, and I think it is from this that the next big hashtag emerged. The #HighFunctioningMeans hashtag.

If you are on Twitter, I recommend you take a look and follow it. Or even if you’re not on Twitter – you can take a look here. And if you have a Twitter account, or decide to make one, you can join in with tweets of your own. It’s about the frustrations of what it means to be labelled ‘high functioning’ – what this means in reality, how people in society view us, the secret struggles that no one knows about, the misconceptions in particular. The hashtag’s been going a couple of days now, and I hope it lasts longer. If you want to follow me on Twitter, I’m @appleshoelace there.

I’d love to post all the tweets here, but that would take a very long time, so I’ll just post a sample, and urge you to check out the hashtag for yourselves. These are things that are clearly striking a chord with many of us, considering the number of favourites and retweets.

someone else thinks you could learn to stop being disabled if you tried hard enough

“You’re not like MY child”. Actually, i WAS that child.

“you can’t have autism. I should know; my cousin has it and you’re nothing like him. I’m an expert in autism.”

not getting a job cause of disability but also not getting benefits cause in theory you could work.

writing 2500 words on organizational dynamics in an afternoon but struggling to routinely eat/shower/sleep.

awareness of your limits is treated as low self-esteem and learned social caution is treated as anxiety to overcome.

“Oh, I don’t mean YOU. You’re, like, normal and stuff.” But you do mean me.

people get annoyed at you when your shows; disbelieve your diagnosis when it doesn’t. Often on the same day.

no one sees you’re struggling because you’re so “articulate” & “self aware”

And a few that I wrote:

working out:

1 how to ‘act normal’

2 its necessity for survival in an NT world

3 the huge cost in energy and integrity

if you express your struggles, you’re not fit for work, but if you express your abilities, you don’t need support.

fighting our own way, confused but persistent, in a world that doesn’t understand us, but thinks *we* lack empathy!

I can fake ’normal’ when things go well, but when I’m unwell, PMSing, or fatigued, I have no more energy to fake it.

being afraid to disclose your diagnosis, because people either disbelieve you or treat you as incapable and stupid.

These are all issues that really need to be raised, as they highlight the lack of understanding and support from the neurotypical world for those of us who are ‘high functioning’ – who can talk and live independently and often work and act ‘normal’. These tweets, and the many more that can be found on Twitter, speak for themselves.

Managing energy levels with Aspergers

A lot of people commented on my post about Asperger Syndrome and Fatigue, saying they really identify with what I was describing. And I’ve had a couple of comments asking me more about how I manage fatigue, so I want to talk more aobut that. One person, gabygarzalinde, has asked:

I was hoping to hear if your “battery” goes up and down, with regards to the amount of stuff you can do without getting fatigued? Or have you found some kind of baseline?

I found this an interesting way to think about it – I’ve never seen my energy levels as a battery before. But certainly my energy levels do vary. These are not random variations, but rather they are based on a combination of factors. This is similar to everyone, I would imagine – varying energy levels is certainly not purely an autistic thing. Those of us on the autism spectrum are  simply are more vulnerable to fatigue because of the huge amount of energy we expend in trying to process the world with oversensitive brains which don’t automatically process and filter.

I have come up with a list of things that cause my energy ‘battery’ to go down, and a list of things that cause it to go up. I will call these ‘energy drainers’ and ‘energy boosters’, respectively. Some of these will no doubt be the case for most people, regardless of whether or not they are on the autism spectrum. Others may be very specific to me. I can only share my list, and recommend that people come up with their own lists – the more you are able to monitor your reactions to things, the more you can form strategies to maximise your energy levels.

Energy drainers

  • doing a lot of different things in one day, which require constant switching of attention
  • interacting with a lot of people
  • being in a noisy environment
  • being in an environment with fluorescent lighting
  • being in a new situation, or meeting new people – this requires a lot more mental processing
  • not having enough sleep
  • eating a lot of processed foods with artificial additives
  • simply eating too much – more than one’s body needs
  • having had an unpleasant interaction with someone
  • a miscommunication that wasn’t sorted out
  • an unresolved problem in one’s life that one is thinking about
  • feeling confused about something
  • being in a hot environment

Energy boosters

  • being able to focus on the same thing for an extended period of time
  • spending time alone, in a quiet environment with natural lighting
  • having a bath, or going swimming
  • going for a walk alone in the woods
  • having enough sleep
  • having a duvet day – where you are alone and don’t go out
  • reading a novel
  • drawing a picture
  • talking to a friend who understands
  • burning scented candles

For me, a really important thing has been simply recognising that I can’t compare myself with other people. I used to feel constantly inferior, thinking to myself: ‘Why is it that other people have the energy to go to work, hang out with people after work, and then go out in the evening and stay up till 2, and then be able to get up for work the next day? What am I doing wrong?’

Actually, a nice thing about getting older is that after a while, one’s peers are also no longer able to do such things either! But when I was a teenager and young adult, so many people my age could stay up all night and seemed to have endless energy for chatting and partying!

I’ve found helpful to look at it in terms of threshholds. Things like not enough sleep, and unhealthy food, are bad for everyone, but different people have different threshholds of tolerance. There are people who can get only five hours sleep each night for a week, (or a month, or a year) and still be functioning and able to go out socialising in the evenings, and come across as full of energy. They may still feel tired, but their tiredness isn’t disabling – they can still function with it. If I had only five hours sleep for a week, I would not be able to function. My tiredness would be a completely different level from theirs, and I would become unwell.

Sadly, there is a prevalent view in society that ‘if you think you can, you can’, so the people who are thriving on, say, very little sleep, or a very busy lifestyle, are seen as being more positive thinkers than those of us who get exhausted and ill. We are apparently just not trying hard enough, not being positive enough, not embracing the ‘mind over matter’ mantra! We’re giving up too easily! When in fact, we are actually constantly expending way more energy and effort than a non-autistic person, simply to function and survive.

Interestingly, people don’t apply this same logic to those who have physical disabilities. With someone who has a bad leg, or a bad hip, people generally understand that this person won’t be able to walk so far as someone with no mobility difficulties, and that they will tire more quickly. It is not seen as a character flaw, or laziness. Same with someone with cancer – society understands that someone with cancer will easily be tired. I suppose the difficulty with autism is that it’s not a physical disability or an illness. It really isn’t understood very well at all, and fatigue generally isn’t listed as a ‘symptom’.

I had an interesting conversation with someone I met recently. We both have difficulties with fluorescent lights – hers is because she has lupus, she told me, so I told her that mine is because I have Aspergers. Her response was one that I imagine many people with Aspergers will be familiar with:

‘But you don’t seem like you have Aspergers.’

‘Well, no,’ I said, ‘but then that’s because the media portrays it in a very stereotypical way, and it’s different for everyone.’

‘No, but I know about Aspergers,’ she insisted. ‘I know a child with Aspergers, and he’s nothing like you. He doesn’t know how to interact with people. He has challenging behaviour, he fights with the other kids, he screams, the teachers don’t know how to deal with him.’

‘Ah yes, it was the same with me when I was a kid. But I’m forty now – I’ve had many years to learn strategies. My brain doesn’t automatically process a lot of things, so I’ve had to teach myself how to do it deliberately and consciously, working out strategies.’

Her response to this indicated an awareness and insight that I can only say I wish more people demonstrated. She said, ‘Wow, that must be really tiring for you.’

‘Yes,’ I said. ‘Yes, it is.’

It is rather ironic that the more a person is able to find strategies to deal with the difficulties their disability may present, the more they are seen as not really disabled. But the difference – and it is a huge difference – is the effort and energy that person is constantly expending to enable them to function on this level. Never forget that just because someone else is doing something that you find effortless, doesn’t mean they are also finding it effortless – it could be taking every ounce of energy they have. And if sometimes they are not doing it, this doesn’t mean they are being lazy or not caring – they could be simply be taking a much needed rest to restore their energy.

This can apply to socialising, and also to many other things. Spelling everything correctly, for instance, for people with dyslexia – if someone is making spelling errors in an online interaction, never assume they are being stupid or lazy. Spelling does not come equally effortlessly for everyone, and people are not obliged to use up all their energy to do something that happens to come naturally to most people. I am fortunate enough to find spelling and grammar comes naturally to me, but I am aware that this is through no particular virtue of my own, and am constantly amazed at how it’s seen as totally acceptable to judge people for whom this isn’t the case.

What if I compare it to walking with a limp? For example, if you hurt your foot, it can sometimes be possible, with a lot of effort and pain, to walk normally, without a limp, as if nothing was wrong. But that doesn’t mean you are being lazy if you limp, or that you should be judged for simply ‘not trying hard enough’ to walk like everyone else.

Managing one’s energy levels means having to be strategic – prioritising what is most important, simply so you don’t crash. For those of us on the autism spectrum, this can sometimes mean allowing ourself not to fully focus on social skills and social etiquette skills every second of the day. So we may find we have neglected to smile at someone, or to say thank you, and this can really bother people – but actually, it really isn’t the end of the world. This is sometimes what we need to do. And it is something that friends who care about us and want to be understanding should be able to accept. Not that it’s okay to use this as an excuse to be rude to them – it is of course vital that friendships are two-way, with both sides valuing and respecting each other and trying to understand each other. But it’s so important to be able to have that conversation with friends, where you explain that you care about them, but you need time alone, and that you will sometimes make social errors, and that you don’t always have the energy to maintain social skills. Friends who are able to understand this are true friends, and together you can find ways to understand each other and value each other.

Processing, organising, and 750 words

I talked in my last post about how difficult it is to know how you are feeling when you are on the autism spectrum. It’s commonly said about autistic people: ‘Oh, they can’t express their feelings’. I would argue that it is a lot more complex than that. In fact, those who know me well would say that I’m very eloquent in expressing my feelings. But learning to express my feelings has been a long and complicated process. When your body and mind are hypersensitive, and take in every detail, you feel a lot of things very intensely and simultaneously, which can easily lead to overload. And that makes it  pretty much impossible to know at a particular moment what you are feeling – to be able to break down every feeling and the reasons for it. You’re too busy just trying to survive! And if you don’t know what you are feeling, it is of course impossible to express it in words. So part of my journey has been learning to process and know what I’m feeling – then I can express it.

I’ve written before about how writing helps me to process my feelings. I often don’t know what I’m feeling until I write. It’s like my thoughts and feelings bypass the ‘inside my head’ processing, and go straight from being an unprocessed mess inside me to being an organised, clear description on the page. It’s as if my fingers themselves are doing the thinking as they type or write! I can’t explain this, other than to say it happens, and continues to happen, each time I write. From the simplest things like realising I’m tired or hungry (so many times I’ve written ‘I’m hungry’ and then realised at that moment that, yes, I am hungry – the writing had to come first, before I realised it!) to more complex things like writing about my feelings when someone dies.

I find the more overwhelmed I am, the more necessary it is to write – although ironically it’s when I’m most overwhelmed that I find it hardest to discipline myself to sit down and write. It is a discipline – and when one is busy with lots of other essential things, it’s easy to not bother. But as I have grown older, I’ve realised that writing, while it may seem like an optional extra, is really a necessity for me, and is the major way I’ve grown and developed and learnt to understand myself and the world around me, and to function and thrive.

I’ve realised something new about this recently. I discovered a site called 750 Words. The idea is that you write 750 words a day, and the site gives you ‘badges’ for writing a certain number of days in a row, and there are graphs that show your writing speed, and also your mood and attitude while writing (based on the words you use – it’s not always accurate, but it’s quite fun, at least if you’re someone who likes graphs!). So I’ve been doing this, and have found that the graphs and badges have motivated me like nothing before has – and I got so carried away with wanting to write lots of words that I decided to write 5,000 words a day. On the free 30 day trial, you can only write up to 1,000 words a day, but if you buy a ‘cup of patronage’, which is $5 (around £3 in UK money) you can write unlimited words. So I did this, because I was finding the site so very useful and wanted to see what it would be like if I wrote a much greater number of words. I then started writing 5,000 words a day, and sometimes more – sometimes 10,000.

This is way more than I normally write, and I figured I’d probably dry up and not know what to write and get bored – but instead, I found that I was writing all sorts. Lots of pointless things – just any observation that occurred to me – but also things that were important. Not only was I writing thoughts and feelings, but I was writing things I had to do as they occurred to me. And I found the act of writing them down like this actually got me to do them – far more effectively than a ‘to do’ list, which always overwhelms me. I have always had a difficulty with organisation (‘executive dysfunction’, it’s called, and is a common problem for autistic people), and have experimented with all sorts of strategies, but this actually helped me get things done. I can’t explain why, and can’t say it will necessarily help others on the autism spectrum, but the simple act of remembering and writing down things I have to do, as part of the process of writing down my thoughts in general, has made me organised than I’ve ever been. I’d write about it and then do it.

I’ve also found that the extended writing, of several thousand words a day, has got me beyond simply just expressing how I’m feeling, to finding solutions to things that bothered me. I was quite upset that the 750 words site was only free for 30 days, and then I’d have to sign up and pay monthly, when I don’t have an income at the moment. I wrote a lot of upset feelings about this, but then, as I kept writing, I found myself moving on to exploring solutions – such as maybe joining up each month with a different email address, or finding another site, or looking for software that I could use without even having to connect to the internet. And then it occurred to me that maybe there was another way to get membership without paying, even though the site didn’t say so – thinking of other sites, where I’ve written articles, or volunteered as staff on the site, in order to get a membership.

So – and this is partly the reason for this blog post! – I decided to ask if I could earn some membership by writing a blog post about the site, telling people how useful it is for people on the autism spectrum.  To be honest, I’d kind of wanted to write a blog post about it anyway – I like to share things that are useful – but I figured this could make it a ‘win-win’ situation. Once I’d thought of this idea, I went to the ‘help’ section, and actually found there was a category of request called ‘plea for membership’ – which immediately made me realise that the site owners are open to granting membership to people with no money. So I asked. And was granted four months membership, even without having written a blog post.

I’m glad – because I feel a bit awkward recommending a site which is a paid site, knowing that not everyone can afford a monthly payment. What I was originally going to say – and which still is the case, really – is that I’d recommend doing the 30-day trial, if you think that writing daily could help processing your feelings and thoughts. And then, if you find it helpful, you can go to the ‘help’ page and do a plea for membership. I recommended it to a friend of mine with Aspergers, who doesn’t normally write (he’s dyslexic), but who wanted a way to understand himself and how his Aspergers affects him. He’s been using it every day since I recommended it, and is finding it helpful – so that makes me realise it’s not just me. And I’ll say here what I said to him – it doesn’t matter if you spell things wrong or write with wrong grammar. It’s just the idea of getting your thoughts and feelings out, in whatever mess they are in – a sort of brain dump. And if you are a visual person, it can be helpful to see your thoughts written out, rather than have them all in a muddle in your head.

Another thing I realised, through asking questions in the help section (all answered by Kellianne, who is very helpful) is that a ‘cup of patronage’ on this site is the same as a month of membership. So as well as buying myself the ability to write more than 1,000 words a day, I had also bought myself a month of membership. It isn’t clear on the site that membership and patronage are the same – at least, it wasn’t clear to me – so I am explaining this here, because it’s something I would have liked to know from the start. Membership is when you start a standing payment that is taken from your account every month, and patronage is a one off payment. Also, you can ‘use up’ your patronage by writing a ‘note of inspiration’ instead of having a month of membership.

The site also has monthly challenges – these just involve writing at least 750 words a day for each day of the month. If you sign up for a month’s challenge and complete it, then you get a ‘cup of patronage’. So, the most logical way to organise being able to use this site is to start a trial membership on the first day of a month that has 30 days. Then you can complete the challenge in your 30 day trial and have a free month, and if you join up for the month challenge each month, and complete it, then you’ll keep getting another free month. This is a way both to use the site for free and to be strongly motivated to write every day!

Of course, if you can afford it and if you like the site, you might want to donate as well. Which was part of the reason I wanted to buy a cup of patronage – as well as wanting to write more than 1,000 words, I was getting a lot out of the site, and wanted to give to it. I just couldn’t commit to doing that every month at the moment.

I will add, because this is always an important consideration of mine when finding sites to write on, that you can customise the writing page – change the font, the background colour, etc. Which is very important for those of us with visual processing difficulties (Irlen Syndrome).

There are of course lots of other sites where you can write too. Penzu is a favourite of mine, and I use that for more structured writing, like writing blog posts (I’m using it right now, in fact!). You can get a free account or pay for a Pro account. The Pro accounts are $19 a year – maybe I could try asking the Penzu people for a free Pro account in exchange for writing about them here! I had a Pro account once for a year, from someone using my link to get a Pro account. It’s a thing they do – so if anyone wants a Penzu Pro account, and wants 20% off, use this link: http://penzu.com/r/86ed2f7e – and then I get a free year of Penzu Pro. And you would also get a link where you could do the same. Penzu Pro is good because it lets you have several journals and you can customise the page to different colour backgrounds (again, so important if you have visual processing difficulties).

But the most important thing, I think, is just to write. I have written in all sorts of ways over the years, with pencil or pen in paper note books, typing in Word documents, in diary software, etc. At the moment, my favourite way to write my thoughts and feelings is the 750 words site – the badges and the graphs are amazingly motivating and fun, and the site owners seem friendly and helpful, which I think is important. I’ve only been using the site for 19 days so far – I was trying to put off writing a blog post until I’d used it for longer, but I guess I can always write another one in a year’s time if I’m still doing it, and then I’ll have a better idea of the longterm effects of such intense writing every day. But in the 19 days, I have written 104,000 words altogether, which I’m quite amazed by! And so far I’m feeling more organised in my thinking and more positive and strategic. So I’d definitely recommend giving it a try.

The horrors of getting a haircut

Something that I’ve become more and more aware of in recent years is that I hate getting my hair cut. Really hate it – in much the same way as many people hate going to the dentist.

It may seem odd that I’ve only recently become aware of this – surely you know if you hate something, after all! But as I grow in self-awareness, I am realising that that the simple act of knowing how one feels about a certain activity is not so simple when you’re on the autism spectrum. Being hypersensitive to so many things, you are often simply in a state of overwhelm. You are generally feeling a whole lot of things at any one time, and can’t automatically distinguish what they all are, let alone what caused these feelings in the first place.

I began to realise that I hate getting my hair cut when I became aware that I was putting off going to the hairdresser. I would know I needed a haircut – my hair was getting more and more uncomfortable as it grew longer and the style grew out, and I really wanted it to be cut – but somehow I would find excuses not to go. I would hate thinking about it. I would finally go into town, find a hairdresser, ask if they had an appointment at that time, and if they did, I would go for it, and get it over and done with – and then go home and cry. A few years ago, I found a hairdresser I was comfortable with, and it was such a relief. I saw her each time I went, but then she moved to Australia. And I was devastated – feeling terrifed about finding another one. Clearly these were rather extreme reactions, so you’d think I’d realise from this what a big deal it was. But these things would flit from my awareness – they would bother me greatly at the time and then I would forget about them, and so I didn’t build up any awareness of a pattern for a long time. Nor did I analyse exactly what it was that I hated.

I think part of it is that logically there didn’t seem any reason to hate it. I knew a haircut was supposed to be a nice thing – a treat, a pampering. And when society tells you that something is wonderful, it can be hard to actually process the fact that you don’t share that feeling. Going to the dentist was fine – I knew that was supposed to be horrible, so I was prepared and could easily process my feelings of dislike and go ahead anyway. But the idea of having my hair cut elicited lots of conflicting and confused feelings that I’d never really thought to analyse.

Interestingly, when I first started reading about autism, many years ago, one thing I kept coming across was the idea that autistic children hate getting their hair cut because it actually hurts them. These (very old-fashioned and dated!) articles would claim that while cutting hair doesn’t hurt a ‘normal’ person, it actually hurts an autistic person – they can actually feel their hair getting cut and it hurts. So I’d read that and took a pair of scissors and cut one of my hairs, just to see if it hurt. No, my hair was normal hair, I realised – not autistic hair. It doesn’t hurt. Same as fingernails. So I’d concluded that getting my hair cut doesn’t hurt.

More recently, I’ve realised it does hurt – but not in the simplistic way that those articles seemed to be suggesting (or possibly I was misinterpreting, taking them too literally! A difficulty with being autistic is never quite knowing if a misunderstanding is due to your autism – it can be, but certainly isn’t always). It’s not that I have feeling in my hair – rather, it’s the pulling of my hair that comes with brushing and combing and tying bits up. My head hurts afterwards. And the blowdrying always causes me distress, because the hairdryers are put so very close to my head and they are too hot, and feel intrusively close. And the smells of the various stuff sprayed in the room (even when not sprayed at my head) overwhelms me. It’s just an overwhelming, painful experience in general.

And there’s the fear of the unexpected – not knowing quite how it will look at the end. Will it be okay? Will the sides be the same length? I’ve had many a hairdresser get annoyed with me in the past because I said that one side was longer than the other, and I wanted them even! A main reason I was comfortable with the hairdresser who went to Australia was that she would simply laugh in a friendly way when I explained I wanted the sides even – she was totally laid back about it and that made such a difference. It can be a frightening feeling when someone is irritated with you. Also, she didn’t chat to me, which also made a difference. It’s not that I can’t make myself do small talk when necessary, but having to make small talk to a stranger while on complete sensory overload is very exhausting. Especially when they ask: ‘What are you doing today?’ or ‘What are your plans for today?’ – and you think in a panic: ‘Gosh, what do I say? Am I supposed to have plans beyond this? I have no idea what I’m doing – I’ve mustered all my energy to get my hair cut and haven’t thought beyond that! This is what I’m doing! Getting my hair cut! Then I’ll go home and recover!’ But of course, one can’t say that, so I generally say something vague like ‘Oh, I’m going shopping’, and hope they don’t ask what I’m buying!

I’ve been wanting to write about this for a couple of years now – each time I’ve been to the hairdressers and come back home feeling quite traumatised, I’ve thought to myself: ‘I must write a blog post about this. I’m sure there must be others on the autism spectrum who are the same.’

Actually, now is probably the best time for me to be writing about it, because I have finally come up with a solution, which seems so simple I don’t know why I didn’t come up with it years ago. There are hairdressers who come to your home. And there are hairdressers who let you go to their home. And it’s so much simpler that way. You’re not in a noisy, smelly environment. You don’t have to have your hair blowdried in a certain way (in theory you don’t in a hair salon either, but no matter how many times I’ve asked the stylist to keep the hairdryer at a distance from my hair and not touch it, and they’ve agreed, they always end up doing it the way they always do it!). It’s more peaceful and more personal and easier to process. It’s cheaper too, which is always a bonus.

The difference with home hair stylists is that often it’s through word of mouth that you hear about them – and many of us on the autism spectrum don’t tend to be very chatty, and often we are not in the know about the various social things that people talk about. I realised I’d have to make the effort to ask colleagues about where they get their hair cut, and whether they knew any home stylists. But once I did that, I realised it was much easier than I thought. A lot of women love talking about such things and have all sorts of connections! One of my colleagues has a daughter who is a hair stylist and cuts hair in her own home as well as in a salon, so I went to her home. Much less stressful than going to a salon! Much quicker too. And now I’m at the stage where my hair really needs cutting again, and for the first time, I’m not the slightest scared about making an appointment.

One thing occurs to me to mention before I end. Those of us on the autism spectrum are often thought to have an irrational fear of change. And if I weren’t able to express myself in words, it would be very easy for people to see my distress at having my hairdresser move to Australia as a typical example of this. It’s not a big deal for most people to have to change hairdresser, after all. But if you see it in terms of sensory hypersensitivity, and having extreme difficulty with a certain type of experience, it starts to seem a lot less irrational – of course if something generally causes pain and discomfort, it is incredibly important to find someone who can do it in a way that minimises these feelings – and when finding such a person is difficult, you want to keep the one you’ve got! The same can be applied to all sorts of things – when you see an autistic child who wears the same clothes over and over and gets distressed at having to buy new clothes, it may well be that the clothes he’s got used to are the ones that cause least discomfort. Having to start wearing new clothes potentially causes a great deal of pain and discomfort.

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.