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.

‘I don’t want to play in the playground!’

One of the things about Aspergers I struggle to explain is that of difficulty expressing emotion. Perhaps this is because I have quite an effective strategy for this now – I write down my feelings regularly, and this helps me process them. The more I do this, the better I become at recognising my emotions. I also have read a great deal of material on psychology, so I can analyse myself and others in the light of this, and gain understanding this way.

Thus I understand myself and others by referring to what I will call catalogues in my brain. I refer to everything I have observed about the person (or myself) and what I’ve observed about people in general, and what I’ve read about pyschology. I find the pieces that fit together. It occurs to me that non-autistic people probably have a different way of understanding themselves and others, and that I have no idea what this way is, because I’ve never heard anyone verbalise it.

Anyway, in order to explore the difficulty people on the autistic spectrum have expressing emotion, I think I need to go back in time to when I was a child, and I had no such strategies. Back to when I was four years old and I’d just started school…

The thing I hated most about school was the playground. It made no sense to me. Well, school as a whole didn’t make sense to me, but the playground made even less sense! Children ran around quite randomly and I saw no point or pattern to the way they behaved. There would always be a teacher standing in the playground, but I didn’t understand why she was there, because she wasn’t telling us what to do. So I had no idea what I was supposed to be doing. The weather was generally damp and uncomfortable for me too. While I could easily amuse myself in a quiet room at home, I felt quite lost and bewildered in a big noisy chilly damp playground where children were running around and behaving in a chaotic way and a teacher was watching us. I had no desire to play with the other children, because their play made no sense and they made no sense.

Bear in mind that I can describe this in retrospect, because I remember it very clearly and I now have the ability to translate thought processes and feelings into words. At the time, I didn’t have this ability. There was just this overwhelming chaotic frightening confusion.

One day at playtime, when I was still very new to school, I observed that the teacher standing there was my class teacher, whom I will call Miss Bailey. There seemed to be a different teacher each day, and this too seemed random and confusing. But now that it was Miss Bailey, I felt that there was something that sort of made sense in the playground. Miss Bailey knew who I was, and I knew who she was. Maybe she could help me.

So I went up to her and started screaming in a distressed way. Not because I was bad or attention seeking, but because I wanted help and I didn’t know how to ask. Despite being very verbal and having good language skills, I couldn’t put into words what the problem was or what help I wanted.

Miss Bailey was used to me screaming. It was a regular occurrence. She found it frustrating (another thing which I realise in retrospect, by analysing the things she would say in response!). She said to me ‘What’s wrong now?’

I screamed louder. Not because her words upset me, but because her words meant that I was being acknowledged, and that she realised that something was wrong. So my louder scream was my response to that – my way of saying ‘Yes, something is wrong – you’re right!’ (Once again, this is something I realise in retrospect, as I put the memory of my feelings into words).

Miss Bailey asked me again what was wrong, and told me to stop screaming and to explain to her what was wrong. I couldn’t explain it, so I just carried on screaming. She started to suggest things to me – Had someone hurt me? Had I fallen over?

‘No!’ I sobbed.

‘Then what’s wrong?’

I actually don’t remember the exact details of what happened next – whether Miss Bailey came up with the idea or whether I came up with it – but I started screaming ‘I don’t want to play in the playground!’

‘Why not?’ she asked.

I had no idea, so I just repeated again and again ‘I don’t want to play in the playground!’ I ran around her in circles, as I cried ‘I don’t to play in the playground! I don’t want to play in the playground!’

Miss Bailey said some things to try to jolly me along, and make playing in the playground sound appealing. She suggested various things I might like to do. I said ‘No’ to them all, and then kept repeating ‘I don’t want to play in the playground!’

Then she came up with a different solution: ‘Do you want to stand with me here?’

I thought about it. If I stood with Miss Bailey then I wouldn’t have to be with all the other children, and I wouldn’t be confused by not knowing what I was supposed to be doing and where I was supposed to be going. I’d just have to stand there. That was easy, and not confusing. ‘Yes,’ I said.

Miss Bailey took my hand, and I stood there holding her hand, and I liked the rest of that playtime.

Playtimes after that were as chaotic and unpleasant as usual – until the next time Miss Bailey was on duty. I was so delighted to see her! I knew exactly what to do this time. I went up to her and started screaming ‘I don’t want to play in the playground! I don’t want to play in the playground!’

‘That’s okay,’ she said. ‘I know you don’t like playing in the playground. Normally this isn’t allowed, but you can go inside and sit in the classroom.’

A surge of panic rose up inside me. That wasn’t what was supposed to happen! That didn’t happen last time. Why had she changed it?

‘Nooo!’ I screamed. ‘I don’t want to play in the playground! I don’t want to play in the playground!’ I kept repeating it, because I knew that last time I’d repeated those words, she’d let me stand with her and hold her hand.

To be honest, if she’d told me to go inside the first day, I’d probably have welcomed it. There was nothing bad about going inside – it was just frightening to me now, because it contradicted the small piece of sense I’d made of the chaotic world around me. I’d discovered – or thought I’d discovered – that if I screamed ‘I don’t want to play in the playground’ then Miss Bailey would let me stand with her and hold her hand during playtime, so playtime didn’t have to be horrible any more. A simple cause and effect thing. A pattern. A way that I could have some sense of control in the mayhem surrounding me.

Poor Miss Bailey didn’t understand all this, of course. ‘I know you don’t want to play in the playground. If you go inside, you won’t be in the playground. You said you don’t want to play in the playground and I’m saying you don’t have to.’

Her voice didn’t sound as warm as last time – last time she’d sounded like she really wanted to help me, but this time she seemed less interested and more frustrated. This confused and frightened me, because it made her seem like a different person. The idea that doing the same thing could elicit two completely different responses from the same person made the world even more unpredictable and terrifying. Of course, in retrospect, I can reason that she’d probably thought about it after the first time, realised I hated the playground, and so wanted to come up with a better solution for me than just standing there holding her hand. But at the time I had no way of working this out. So I screamed and screamed, quite distraught.

I don’t remember the details of the interaction that followed. Miss Bailey tried to find a solution, and eventually realised that I wanted to hold her hand. She let me hold her hand, but, unlike the first time, when she’d been welcoming to me, this time she said, ‘Why didn’t you say that to begin with? If you want to hold my hand, just ask me if you can hold my hand. Don’t scream and say you don’t want to play in the playground. All you had to do was ask me. You can hold my hand now, but you can’t always hold my hand, because sometimes the other children like to hold my hand.’

After that, I never stood beside her and held her hand again. Partly because I was scared by the fact that she’d seemed to change into a different person. Partly because I was confused by the idea of an unreliable hand which other children sometimes held too. I wanted something I could rely on for definite. And partly because, odd though this may seem, I knew I’d never be able to ask her to hold her hand.

This last reason is frustrating to me, looking back, because even now as an adult, I can’t quite explain it. It’s not that I was literally unable to say ‘Can I hold your hand?’ If it had been written in a book, I’d have been able to read it out loud with no problem (I was quite a precocious reader). So logically, it seems to me to be ridiculous that the teacher gave me the very words to say in order to get what I wanted, and yet I couldn’t say them. And yet I can remember the feeling and I know that this inability was very real to me.

I have worked out, though, that it’s to do with expressing feelings. Asking to hold someone’s hand is a question that involves implicit, unspoken feelings – and at four years old I could sense that. However, the feelings aren’t stated in the question, and at four years old, I didn’t understand the feelings. I find that if I’m asking for something (even now as an adult) I feel the need to be able to explain why I’m asking. Had I had, at four years old, the language and reasoning ability I have now, I’d have been able to say to my teacher ‘Look, I find playtime really chaotic and scary, because it makes no sense to me, and so it gives me a sense of security to stand with you and hold your hand.’ That would have been an easier question to ask, emotion-wise. If I’d been able to understand my feelings in the light of what I know now about psychology, they wouldn’t have seemed like strange, overpowering, inexplicable things. But without that understanding, to say something or ask something which involves feelings would be quite terrifying.

Yet surely ‘I don’t want to play in the playground’ also expresses feelings, as does screaming. But the screaming was, to me, a more accurate representation of the feelings I had – chaotic and confusing and wordless. How does one convert such feelings into a quiet, polite ‘Can I hold your hand?’ To me there was no correlation between the question and what I was feeling. And I somehow needed – still need – that correlation. An external integration to make up for the lack of internal integration, maybe.

Anyway, this is my example of difficulty expressing emotions. It’s complex, I think – more complex than it’s portrayed to be. I think it’s probably to do with a need for accuracy and truth – something very important for people on the spectrum, because any deviation from the truth creates confusion. And the trouble with emotions is that they can’t truly be contained by words – they are a different language from words. The analytical part of the brain that analyses with words isn’t the part that feels emotions. Even now, as I write my emotions down regularly to process them, I’m aware that writing them never fully depicts their depth and complexity. I can describe them in a detached, analytical way, but that is not the same as feeling them. There is something intrinsically wordless about emotions.

I think non-autistic people get round this by showing both the emotion and the language together – another form of multitasking! I can only do one or the other. I can explain the emotions in words – which can lead people to think I’m not actually feeling the emotions I’m expressing, because my voice will sound matter-of-fact – or I can express the emotions wordlessly by, say, crying, or getting angry. In this case, I may use words, but have little control over them, so they are disjointed and ineloquent. This does not create a good impression, so I tend to choose the former option.

I have learnt to act. When I am talking with someone else about their emotions, I can do appropriate voice tone and facial expression. I do this because it’s a social convention and people like it, but in reality, I am not feeling feelings at the same time as talking. Not that I don’t feel feelings for others, but I just can’t fully experience feelings and express myself in language at the same time. However, while I do this with others, I never do it when expressing my own feelings. It seems false somehow. When I do it for others, it may in one sense be false, but it’s also a conscious decision to follow a convention that makes the other person feel valued – so it is real from that perspective.  But describing my own emotions is different. It’s more confusing – while people like you to express appropriate emotion over their feelings, they don’t always like you expressing too much emotion over your own feelings. Or rather, there are all kinds of unwritten boundaries, particularly in the UK, where the ‘stiff upper lip’ mentality still remains to some extent, and expressing too much emotion is often seen as indulgent or needy, while expressing too little freaks people out because you seem like a robot.

So, while I’ve learnt how to find words to express emotions, I haven’t yet mastered the art of seamlessly integrating verbal expression of my emotion with wordless expression of my emotion. But still – I’ve come a long way since the age of four!

And now, to conclude, I’m going to think about what would have helped me at four years old – a verbal, intelligent child who somehow didn’t have the words to express emotion. Looking back, I know my teacher wanted to help me – she just didn’t know how. I actually think it would have helped me to have coloured tickets – one colour to say I want to play in the playground, another to say I want to hold the teacher’s hand, and another to say I want to go inside.

The teacher would have had to explain these tickets in detail to me and tell me the exact procedure of how to use them, and then I think I would have really enjoyed such a system. It would have been a simple shorthand to express what I wanted, and to know these were three options which I could choose without having to to understand and explain the feelings behind them. Not that it’s not important to understand and explain feelings, but I think that would have been better developed in a separate non-stressful time, one-on-one with a support teacher (we didn’t have support teachers back when I was a kid, but I’m just thinking what would have worked for me in an ideal world).

I think I’d have needed my teacher to explicitly explain to me that there were different options at playtime – and even to talk about the playing options. If she’d explained to me that different children like to play different things, and that everyone’s different, and if she’d talked to me about the odd sorts of games different children played, whilst making it clear that not everyone likes such games, then I’d have felt less bewildered. I can see the value of Social Stories, which I know are popular now with kids on the autistic spectrum – a social story explaining playtime would have been really helpful.

As for expressing emotions, I can see how pictures of different faces – smiling face, sad face, angry face, etc. – would be very useful for a child. When overwhelmed by emotion and confusion, it’s hard to see through all the overwhelming details of confusion and pinpoint an emotion. Perhaps pictures of faces would act as a sort of prompt – in the way that writing down my thoughts and feelings prompts me as an adult to pinpoint how I’m feeling.

I’ve always found ending blog posts very hard. Everything I write seems to lead to something else, and I always feel the need to clarify further, and give further exampes. Summing up with a neat conclusion seems impossible, because I end up with more questions than answers. So I end up stopping abruptly purely because the post has got far too long! Which I’m afraid I’ll have to do here too. I know this is a huge topic, and my oversized blog post really doesn’t cover it all! But I hope it gives some idea of how and why expressing emotions can be difficult for people on the spectrum.