An Event

I sit at the back, in the corner,
Quietly rolling the ball on my fidget cube
While my leg moves, involuntarily,
Hardly noticed by me.
Maybe I rock?
I can’t remember.
Since I stopped actively preventing what feels so natural
I am not always conscious of it,
Just like I do not always observe my breathing.

The parquet floor reminds me of years
Spent in public buildings.
I adore this pattern and its pleasing geometry.
It calms me.

They read poems, the poets, proper poets.
The theme of the evening – mental health.
Bipolar disorder all over the place.
I almost wonder if anyone in the room has not experienced
That wild fluctuations in mood and behaviour
That so many of us do.

My own system is on high alert.
It has been for hours.
I nearly didn’t make it.
Mid afternoon I felt so anxious, so unable to cope,
That I thought my entire being would shatter into a million pieces from the strain…
Like the glass panel in our sitting room did, ending up like crazy paving.
But 15 minutes beating my head against a cushion
Helped.

I sit, my legs now folded up beneath me, playing with my hair.
Machinery from the coffee shop behind me a persistent aural backdrop.
Traffic noise, horns, bicycle bells, the sound of footsteps in the street below.
British history books in my line of vision.

And words. Surrounded by words
(Not just the ones in the books,
But the loud ones, in the air).
I know I have to listen and make pictures from these words
Because there are no subtitles at a live poetry reading.
Maybe I should have acquired books of the poems at the start.
Never thought of that.

They speak well.
This is all good stuff. Mental health awareness.
Yes yes yes. It is. This is right.
So much of my own experience described.
These people know. They talk sense.
And it’s like they have been inside my crumbling head…
They have taken the same medications, felt those same effects.
I relate to what is said, even though I cannot say.
I would contribute, but my words are drying up.
There is open mic
(But no actual mic – so open air?
But we are indoors. Oh confusion!).
I stay silent. I am not a poet.
I leave the poeting to the poets
And the writing to the writers.
I am a foreigner in this world.

Afterwards, people chat.
I feel it, the heat, the familiar nearly nausea, as the sound of talking starts to overload my system.
The beads of sweat start to trickle down my back, just like they do every time I go shopping.
I retreat round the corner
And focus on the Russian history books.
Ivan the Terrible, Catherine the Great, Peter the Great.
Romanovs, Rasputin.
Trotsky, Lenin, Stalin.
Gorbachev, Putin, Litvinenko.
I am bizarrely fascinated by Russia
So this is a good place to be.
I covet a thick volume on Rasputin.

My husband finds where I am hidden.
I hug the poets, friends of mine, known online for years, some only just met in person.
All I can tell them is “Yes, all the things, yes…”
Or something like that.
I hope they understood what I meant.

As we get into the car I speculate that folk didn’t seem to mind me being there.
He makes some comment about me being the person in the dark glasses.
I had totally forgotten I was even wearing them.
I’m so used to that part now!

By the time we get home making words is difficult.
Exhaustion engulfs me.

But I did it.
Gradually working out
How to be in the world again.

But in this new life I am going out there as myself,
No longer pretending to be someone else. The act is gone.
It is all new.

Takes time
To adjust.

Also Remember

Sometimes I am too tired
And cannot always
Summon up
The energy
To release
The tension
By moving
Rocking
Bashing.

Sometimes it doesn’t quite work
And the safe strategies
Will tip over
Into less safe ones
And I want to hit my legs
And tear my skin
Because I need more
Than movement alone
And safe bashing
Can provide.

But I must also remember
I have a heavy weighted blanket.
Over eight kilogrammes
Of reassuring pressure
That I can place over me

And when I return
From the third day out in a week
Exhausted,
Unsettled,
Desperate to feel better
Somehow.

I can crawl under my blanket
And feel calmer
And better
Anxiety subsiding
Nausea retreating
The urge to hit myself
Disappearing

And I am still
And calm

Grounded
Reassured.

Must Remember

The anxiety
Huge.

The feelings
Wrong.

Me,
Wishing there was some magic solution.

How do I stop feeling
So terribly out of balance,
So terribly wrong.

So I listen
Really listen
To my body

And the answer
Comes

I know it
As soon as I just give in,
Listen,
Forget what might appear right
To the outside world.

So I bash myself against the sofa
All of me
Over and over and over
Rocking
Hitting
Safely

Not playing with a toy
Not gently rocking
But stimming
Hard

Just giving in
To what feels right

The sort of thing
I don’t see discussed often.

Beating my back and head against the cushions

It is beautiful

And I start to feel better,
Calmer,
Happier,
More right.

Finally relaxing.

I really must remember this.

It is important.

Part of my life.

And I am still startled
By how strong the need
And how powerful the effect

And just how natural it feels.

Totally right.

One day I will try to study it
And explain
Properly

But for now
I simply do what feels right
What is evidently hardwired in to me somehow

Because I can
And it makes me feel
Better.

Liberation!

Sometimes,
It is hard, tough, stressful.

Sometimes,
It is difficult
And I wonder
If life will ever
Feel OK.

But…

Sometimes,
It is beautiful.

Sometimes,
The utter delight
At having found myself
And having discovered
Who I really am
And how my life
Is meant to be

Feels like it wants
To make bubbles
And light
And magic
And colours
And sparkles
And joyousness.

I rock back and forth
And it feels GOOD
And RIGHT!

I play with my toys
And sit on my feet
And flap my hands
And rub nice things
All over my face…

And don’t worry about
Speech
Or eyes
Or “doing it right”
Or what is
“Expected” of me.

Because

I finally have freedom
And permission
To be who I am.

It has been
A long time
Coming,

But I am very glad
That this
LIBERATION
Eventually arrived!

Allowing myself
Just
To be
Autistic me
Is sometimes
A very
Very
Beautiful
Thing.

Whatever You Call It

So, the dreaded “Autism whatever-you-call-it Day” has arrived. The day that, in theory, should be about autistic people and their needs and so on, but, from what I’ve gathered so far, seems not quite to work out that way (remember, I’m still really new to all this, and still learning, so I’m not going to go into detail about some of the more frightening aspects of the “light it up blue” campaign (please don’t light things up blue – many autistic people hate it, as they also hate the “puzzle piece” symbol), because I need to do further research and thinking before I’m confident enough to discuss some of the things I’ve been reading over the last few months – as far as the “politics” of autism are concerned, I’m very much still at the “listen and learn” stage).

However, as a newly-fledged autistic blogger, I eventually succumbed to the need to make some sort of statement about this day/week/month or whatever. I believe it was originally called Autism Awareness (and was then taken over by a particular organisation), but that the autistic community are now pushing it towards Autism Acceptance, and I’ve even seen several suggestions that it should be called Autism Appreciation! So, I’m going to look at awareness, acceptance, and appreciation, and consider just a few of the things I’d like to see more (or maybe less) of, as far as autism is concerned. This isn’t an exhaustive list, nor am I claiming to act on anyone else’s behalf, and where I’ve mentioned “most autistic people” I am acting, at this stage, only on the impressions I’ve received in the short time I’ve been part of the autistic community. I’m also conscious that the style is a bit rough, and it makes some generalisations for which I don’t currently have “hard” evidence, and that it also addresses non-autistic people rather heavily (if there is any element of “patronising” then it really isn’t intended, though I’m worried it might come over that way). Trying to make the thoughts into words is sometimes a little tricky – I am still very much a novice at this.

Awareness

1. I’d like everyone to be aware, really properly aware, that most autistic people are ADULTS. Autism is a lifelong condition and it doesn’t magically stop when someone reaches a significant birthday. Yet the mainstream focus on autism seems to be almost universally geared towards children – many autistic adults are unsupported, have poor access to diagnostic facilities, and are finding life tough. Many of us went through years of struggles before we even knew we were autistic and are burnt out and traumatised by the experience, yet when we search for information we are faced with a barrage of articles about children. This is not to downplay the importance of care for autistic children and the fantastic job that many parents do in trying to understand and care for their kids, but today’s autistic children will become tomorrow’s autistic adults – and once they’re not cute any more or their parents are no longer around to look after them they will very likely continue to need support.

2. I’d like people to be aware that most autistic people prefer to be referred to as “autistic”, not as a “person with autism” (though not all, and it’s always wise to ask people how they like to identify themselves because it’s their choice). My own thought is that “With autism” implies that some version of the person exists “without autism”. But autism is not an “add-on” – you can’t remove it somehow – the only way to make an autistic person “non-autistic” is to murder them, and I’m seriously not in favour of that approach for very obvious reasons! I’d also like people to be aware that many autistic people really really hate “functioning labels”. I have a whole blog post to write, one day, about the use of “high-functioning”, “low-functioning”, “severe”, and “mild” and how utterly inappropriate these terms are to describe an autistic person – autism is a condition that presents in so many different ways in such a variety of people that dividing the autistic population up based on some arbitrary criteria and how they are perceived in the non-autistic world is both nonsensical, and, to many, deeply offensive.

3. I’d really really like ALL health professionals to be more aware of autism and the needs of autistic people. Really aware. So that nobody will ever show up at a GP surgery and be told they “can’t be autistic because they make eye contact” or “there’s no point diagnosing adults because there’s no support”. So that nobody will have to spend years fighting for their daughter to be diagnosed, and go through multiple misdiagnoses because the professionals don’t know what to look for. I spent 20 years in the mental health system – not one of the professionals I saw suggested that I might be autistic – it was left to some friends I met by accident through a couple of my interests to point it out to me, and I then had to battle through a diagnostic process which nearly killed me, and where I encountered a psychologist who clearly knew very little about autistic people, how to treat them, or what some of the characteristics of autism even are. Awareness of autism in the medical profession is still, at best, patchy.

Acceptance

1. Fully accepting autistic people and our ways is, for many people, going to be challenging, and those non-autistics (also called allistics) who lead the way as allies to their autistic friends and family will, to a significant extent, have to fight against their OWN neurologies. I know quite a lot about fighting one’s neurology – I’ve spent 40 years doing it – it isn’t easy. Worrying about “how things look” or “what people will think” has, sometimes, to be ditched when dealing with autistic people. Picture yourself in this situation: You’ve gone out to coffee with a hungry friend – that friend approaches the counter in dark sunglasses and orders their regular coffee and snack without looking at the barista, the snack is sold out, your friend starts to sweat and gets anxious and walks away from the counter, leaving you to choose an alternative snack, pay the bill, and deal with the barista. You get the coffee, take it over to the table, where your friend is sitting, rocking back and forth, and scrolling frantically through their phone. People on the other side of the shop are looking at your friend, who doesn’t thank you for the coffee and barely acknowledges your arrival. A gang of kids comes in and starts laughing at the two of you, your friend starts to wave their hands around, which makes you even more conspicuous, and then screams hysterically, jumps out of their seat, and runs out of the shop and up the road in tears, leaving you to sort out the resulting chaos. If you’re still cool at that point and totally accept that your friend’s behaviour is entirely beyond their control and is the result of their being autistic and you totally accept it all then I think you’re wonderful! And you’ve just had coffee with me on one of the days where I’ve made myself cope in the outside world when I needed to be somewhere, when the option just to curl up and stay at home wasn’t available.

2. Accepting autistic people doesn’t just mean accepting the visible either. I am one of those autistic people who visibly stims. I always have to some extent, and now I know how good for me it is I control it the absolute minimum possible – it’s easy to see. I wasn’t asked about repetitive movements at my assessment because there was no need – it was obvious! With me it’s a case of “love me, love my stimming” – simples!!! However, there are many autistic people who don’t visibly stim, who might be waggling their toes inside their shoes, or subtly pressing parts of themselves against something. There will be nothing to see, but they might be finding it really difficult to follow a conversation or cope with being downwind of someone wearing strong perfume. They might have changed their clothes 20 times before leaving home because they were having a bad sensory day. They might have spent the previous night in tears because their favourite blanket was in the washing machine or the shop had run out of the only thing they could possibly eat for breakfast. They might, themselves, be anxious about asking for adaptions and not be quite as brazen as I often am about such things (sometimes I’m very brazen, other times I find it more difficult). Accepting the invisible can be particularly challenging for many people, but to fully accept every autistic person it is essential – the words “but you don’t look autistic” can, I’ve read so many times, feel invalidating and hurtful. Personally, I’ve never had those words said to me (see the start of this paragraph, which probably explains why), but not every autistic person is like me, and questioning somebody’s identity based upon some kind of stereotype of what autistic people are supposed to “look like” is really not cool. Autistic people are varied in their looks and behaviour, just like everybody else!

3. Because autistic people have different ways of perceiving the world and quickly become overloaded, especially in certain environments and around people, we need a LOT of downtime. Accepting that your autistic friend is still your friend and still values you even though they’ve cancelled your meet-up yet again is tough, but is part of the acceptance. Sometimes we really do need to be alone and stare at the wall – maybe for several days. We often need to do things that seem, from an allistic, social, point of view, rude. I am much more likely to be able to cope with having dinner with you if my phone is on the table next to me and I take breaks from talking to you to play a game or retreat into cyberspace – this, I understand, is regarded as rude in many social circles. It is not rude – it is survival, it is coping with overload. Furthermore, for those of us who are sporadically nonverbal and have times when we can’t speak, such devices are our communication tools, and, often, knowing they are there and we can resort to typed communication provides us with sufficient security that we can actually get through a meal and contribute to the conversation because our anxiety levels are lower. Next time you see a child with an iPad in a restaurant, don’t automatically assume that it’s an example of “bad parenting” or similar – it might be the difference between that family being able to go out to lunch or not. We are not necessarily great communicators – we are unlikely to phone you spontaneously, or be very good at getting back to you quickly (sometimes sending an e-mail takes a lot of effort) and we might miss subtle allusions and misunderstand social codes and we often cope rather better if you talk to us in clear, uncluttered language, but we are nearly always doing the best we can – this means we can get exhausted very very quickly. Many of us struggle to keep our homes tidy and clean – if you visit, do not judge us by conventional standards, because we can’t always keep up in the way that might be expected. “Pushing on through” when we are finding things difficult is often, for us, NOT the answer, and might actively damage us (Note: I am aware that some of this doesn’t just apply to autistic people, and there are many others with other conditions who have similar struggles). We can’t operate with the same set of conventions that many other people can because we’re working on a different system with different energy levels.

Appreciation

1. Although we do need time and space, many autistic people really really want to participate in life. If you want to appreciate our enthusiasm and skills, then bear with us and KEEP INVITING US! Sometimes we will have the energy, and we will want to spend time with you and enjoy the things we have in common with you. Sometimes, even if we can’t make it, we will really value the invitation. Many of us have a lot to offer, and we’re happy to share our time and skills with you, even though we’re not often the greatest publicists on the planet. To fully appreciate autistic people takes time, and possibly a little more effort than is usual (believe me, we’ll be making as much effort as we possibly can – it goes both ways – many of us are doing our absolute damndest to fit into the world, even though it is incredibly difficult). Many autistic people have a great deal of knowledge about a great many things – we’re often prolific learners and when we’re interested in something, we can become VERY interested in it indeed – some autistic people can make great careers out of their interests and appreciating talents is just as important as supporting through the difficult bits. (I realise I’m using “we” here, without having consulted with any other person, but I hope you’ll forgive the generalisation based only on my observations thus far – I do make an attempt, from time to time, not to make all of this exclusively about me, because, lovely as it is to be appreciated, I’d really like all other autistic people to enjoy appreciation too). Don’t give up on autistic people because we need a bit of extra consideration – there are autistic people who never speak but write books, and there are autistic speakers who can present brilliantly but miss out on the opportunities for networking in the bar afterwards, and so on. Being autistic is an important part of an autistic person’s identity, yes, but so, often, is being an artist, musician, scientist, poet, writer, sportsperson, someone who cares for animals, and all manner of other things. Appreciate all this stuff for its own sake too! Never underestimate what is going on in our heads, even when it’s not immediately apparent from the outside.

2. If an autistic person shows up at your party, or comes to your event, or spends time with you, then appreciate this – they are likely to have put in a huge amount more effort to have shown up than most other people will have. This statement is in NO WAY intended to induce any sort of guilt or to stop you sending invitations (see above), but just to make you aware that what you see on the surface might not be the full story. I am currently at the stage where, in order to recover from any major time out in the world, I need two full days blank in my schedule where I am mainly alone, mainly in a dimly lit place, and free to stim for hours or watch the same film on repeat, or similar. But most people who see me out in the world will not know that. Most people who watched me play in a concert the other night will be unaware that I spent two full days with a blank diary earlier in the week in order to prepare and that I now have two further blank days in order to recover enough energy for next week’s commitments. Being autistic means, as I’ve already mentioned, getting more tired than most people who do the same stuff. Appreciating the effort made might often mean just being aware of that effort, and, when somebody turns down an offer of a post-gig drink, for example, don’t argue with them or push them, don’t feel slighted when they need to take time out or sit on their own during a tea break, or can’t contribute in quite the same way as everybody else – appreciate the effort that has gone into being there at all, and know that you are the recipient of massive amounts of energy because you, or your event, or whatever, is appreciated and valued by them.

3. And, lastly, appreciate what autistic people themselves have to say. There are lots of us around – we’re everywhere, and many of us have plenty to say for ourselves (as you’ve probably noticed) in the form of books, blogs, and so on. As I’ve already mentioned, we’re a varied bunch, and our opinions on things differ depending upon circumstances, background, and so on. We’re not some sort of bunch of “autistic clones” who are all exactly the same as each other, but we do, often, understand each other in ways that, perhaps, allistic people don’t – even the most highly qualified allistic autism researchers and those who care for autistic people do not experience things from the inside, although many of them do make a great contribution, but in a different way. If you want to know what it’s actually like to be autistic, then asking people who are autistic is, perhaps, a good place to start. Many of us are glad to be asked (though we might take a little time to respond, and, remember, our ways of communicating responses might be a little unconventional). I am, of course, all in favour of autistic appreciation – any time anybody wants to appreciate this particular autistic (and their blog), you’d be very welcome. Appreciation in the form of good lattes, wine, cheese, nice soap, and an endless supply of fuzzy tangles is particularly welcome!!! 😉

As to lighting anything up blue, please don’t. There are various other campaigns such as “light it up gold”, “red instead”, and even “tone it down taupe”, which are, I believe, initiated by the autistic community. I have gone for the colour orange at the top of this post – orange is reasonably close to red, gold, and taupe, and is also the complete opposite to blue on the colour wheel. Thought that might be appropriate!

My “awareness, acceptance, appreciation” duties now discharged as best I can on this day, this blog will now continue, quietly, to do whatever it does in its own way.

Success Fail!

I read an article the other day. Nothing spectacular, not one to which I was ever intending to pay significant attention, and not one that I sought out – it just appeared in my facebook feed and I was sufficiently intrigued to click through and see what it said.

It was entitled something like “How to be Successful”, and was a list of the things you should do in the workplace in order to achieve success and be perceived as honest, open, secure, confident, and so on. I immediately disliked the article, very very much. It was a classic example of “ableism” and discrimination against the neurodiverse, and it made me cross enough to save it to refer to so that I could write a blog post about it.

I have long known that I could never work in any sort of “business” scenario. The closest I ever got was an administration job for a business project attached to an academic institution. I lasted a month. The tears and trauma of putting on the suit every morning were substantial, and I felt my confidence seeping away day by day as I was evidently unable to do the job that I had been hired to do. At the time I thought they were simply impossible people (that may have been true), but the reality of the situation was probably that I was never going to be able to cope in such an environment. If the list below is anything to go by, then it’s now glaringly obvious why I’ve been such a failure in the world of that sort of work (obviously, this is one perspective on one type of work, in one type of environment – this is a blog post, not a thesis attempting to cover all eventualities, and only provides a snapshot of one particular aspect of success in the workplace).

I learnt from the article that to achieve this “success” I should: sit up straight, use gestures correctly, open my arms, not touch my hair, smile, make appropriate eye contact, and give firm handshakes!

Wow!

And I’m expected to do all that while wearing clothes that hurt me, and knowing by magic when to offer to make tea, and being comfortable with working as a team, possibly in an office with lots of office machinery making a lot of noise and fluorescent lighting overhead, and so on…

It’s no wonder I failed.

If I consider each of these criteria for success one by one then I come to the following conclusions about my ability to meet them.

I can sit up reasonably straight for a short period of time, but I find sitting on a chair “normally” extremely uncomfortable – given the choice I always sit with my legs folded under me, and always have. I imagine this is because the pressure is reassuring and helps balance my errant sensory system. If I have to sit on an ordinary chair in the ordinary manner for any length of time I start to feel stressed and sick. My legs will jiggle (involuntarily), and I will run out of energy very very fast.

I received my draft report from my autism assessment the other day (it will be completed after the next meeting). The assessor observed that I can use gestures, but that my range of gestures and facial expressions is much narrower than would be expected and that my gestures are formulaic and learnt. This is me, with 40 years practice and learning – and I still don’t make gestures or facial expressions like most people are able to.

I should open my arms. Like sitting on a chair, I can do that for a very limited time, but it feels forced and unnatural. My natural inclination is to draw my arms in towards me, to bend my elbows upwards, and to clasp my hands together. Sitting with arms open for any length of time feels contrived and uncomfortable, and, also, dishonest, because it feels so clearly like acting. Apparently having closed arms means I disagree with what someone is saying to me – I disagree most strongly with that assumption!

Apparently touching my hair shows a lack of attention!!! Since hair twirling is one of my biggest lifelong stims, it’s actually something that helps me to pay attention. And, moreover, it’s probably one of the more socially acceptable stims – if they don’t want me to touch my hair would they rather I played with a toy or flapped my hands? Maybe I could substitute the hair twirling for rocking and biting my fingers? I suspect that wouldn’t be acceptable either, but any of the above would actually HELP me to pay attention!

Smiling at the right time in the right place is apparently also good if you want to achieve success. How on Earth you’re meant to know what is the right time and the right place to smile I don’t know, and that’s before you have to remember to do it. I refer back to the assessment report that noted my limited range of facial expressions. This smiling business is rather hard work!

And, of course, there’s the inevitable mention of eye contact. If I make eye contact for too long with people I am, apparently, insecure, but if I don’t make eye contact enough then it’s because I have something to hide. And someone like me, who struggles to make any real eye contact with anybody at all just reads this stuff with blank incomprehension. How do I figure any of this out? What do I do?

The last of these pieces of “advice” is probably the only one I could actually follow. I am perfectly capable of giving a good firm handshake. Though I fear that by the time I’d sat up straight with my arms open trying not to touch anything and to work out what gestures and smiles and eye contact to use I’d have such shaky sweaty hands that even my handshake would fail the “business success” test!

***

Yes, this was just some bonkers article off the internet. Yes, I’m being slightly facetious here (but only slightly). Yes, it’s not typical of all workplaces and I’m sure there are some fabulously inclusive disability aware places with people who don’t judge on any of the above. Yes, I’m sure that sort of workplace is not suitable for everyone, autistic or otherwise. I’m trying to avoid a barrage of “but it’s not really like that” comments because I’m aware that all I’m actually doing here is giving a personal response to an article I saw by accident on the internet.

BUT, the very fact that such an article exists indicates that there are people out there who are still equating the things above with “success”. There is no mention anywhere in the article about the person’s ability to DO THE JOB. It’s all window dressing. It’s all superficial. And on some level it must be true – that those things matter to some people, and if they are the things on which they judge potential colleagues or associates, then autistic people are really going to struggle. We’re at a massive disadvantage – and possibly most massively disadvantaged in the world of work at the “higher powered higher earning” end of the market.

I am not in a position to get any such job, and never was. My business acumen is zero, my ability to cope with working in such an environment lasts for a few hours at most these days. I have never aspired to such a career, but maybe there are autistic people out there who would like to work in such an environment and do have exceptional business skills, but who are judged by their ability to sit “correctly” or do appropriate things with their hands, and their skills will be ignored. That makes me sad.

And, if being able to do the seven things listed above is what enables one to be “successful” then I am destined for “failure” because I have a condition that means I cannot perform those tasks “properly” even with massive effort and 40 years practice. I am DOOMED!!!! (Not really, that last bit was sarcastic)!

And the real irony is that I am actually honest, open, and even, at times, can be secure and confident. But because I have a communication disability, some others might have problems perceiving that. Which is sad!

To reiterate – I was definitely cross about the article being quite so ridiculously ableist and I do think there are some massively serious points to be drawn from it when compared to the skills of an autistic person. However, I am old enough and ugly enough also to laugh at such an article, and to say “What a load of rubbish!” My reaction of “Well, I’m an automatic fail then!” wasn’t one of despair, but of sarcastic amusement and a gentle “Fuck you, because you really are clueless about what it’s like to live my life!” to the author of the article and all such articles!

I say this because my husband once wrote a post about how he tripped over a hillock while out running – he’d intended it as a funny story but got a huge number of concerned comments about how sorry people were that he was injured when he wasn’t really injured at all, just recounting an amusing event!

If anyone is still reading at this point and has understood any of this blog post then I congratulate you wholeheartedly! Reward yourself with a cup of tea! I’m off to sit on my feet with my arms crossed, and play with my hair while wearing a blank expression – and I won’t be shaking your hand because I’ll also be holding a cup of tea!

Weighted Blanket

46-2017-01-13-17-51-00I got a weighted blanket.
It was very expensive.
I used my Christmas money.

It came about a week ago.
It is quite big.
And fairly heavy.

It has to be quite heavy.
Because I am quite heavy.
Percentage of body weight.

I got home one day from being out.
Exhausted and queasy.
Stressy and stimmy.

And I covered much of me.
With my heavy blanket.
Weighing down on me.

And I started to feel calmer.
And better, less dizzy, less ill.
Reassuring pressure.

Proprioceptive input.
Sensory rebalancing.
It works. Is good.

The Pea Factory

41-2016-12-20-17-00-59I wrote this back in late September when the whole idea of my being autistic was still very new and I was still exploring what autism was all about. At that time I didn’t have the faintest notion of “visual stimming” (although, of course, I did, because I’d been unknowingly doing it all my life – I just didn’t know what it was called), and I was only just learning that there were things that autistic people particularly tended to enjoy doing and watching – and not only enjoy (because many people enjoy the same things), but find totally compelling, and enjoy not just for a short while, but for hours and hours on end.

***

27 years ago I was a first year undergraduate in Oxford. I had this friend on the next staircase who had this thing that we called “the pea factory”. It was a bit like an egg timer, but instead of sand it had liquid and little balls of green liquid would come out of the top and hit a succession of small ramps and then end up at the bottom. When it was done you turned it over and it did the same thing again.

I spent many many hours with the pea factory. While people chatted, dropped by my friend’s room for coffee, ate toast and chocolate, and nattered about college life, I would sit on the window seat and turn the pea factory over time and time again and watch the little green blobs make their way down the ramp. I loved it. Sometimes it was just my friend and me, and we’d watch the pea factory together and chat quietly, late into the night, while the little green blobs kept on going.

Last night I was on Amazon. As part of this whole process of discovery I’ve been getting hold of books, so was typing “autism” into the search bar. It suggested “autism aids” to me, so I followed it to see what such things might be. And there, half way down the first page, was a modern version of the pea factory. Blue and yellow instead of green and white, but essentially the same thing. And they were selling these things as calming aids for autistic people!!!!

And I almost fell off the sofa as the memories of sitting calmly watching the pea factory in my friend’s room came flooding back. I’m going right through my whole life at the moment and keep coming across so many things like this. I’m trying really hard to just gather evidence to help with the assessment, whenever it will be, and not to fall into some sort of trap of retrofitting everything to an autistic profile, but there are so many things that are making me think and remember.

Maybe there was a reason I loved the pea factory? Maybe whatever soothes autistic people who buy these things on Amazon was the same thing at work in my friend’s room 27 years ago?

And maybe the most extraordinary bit of this story is the identity of the friend who owned the original pea factory…

He’s been my husband for the last 14 years!

Instinctive

37-2016-12-19-18-41-09Some of this
Is easy.

Totally instinctive.

All I have to do is stop
Trying to do anything at all.

Forget what I have learnt
About how best to feel better:
Lying still, keeping calm,
Breathing this way or that.

Just listen.
Really really listen.

And allow myself to feel
What my body wants to do.
Accept my real self.
It was so easy
Once I knew.

I give myself permission
Not to care
About anything else
For as long as I need.

And I rock
Back and forth.
The tension starts to go.

And I bash myself
Against something soft
And safe.

Over and over and over.
Again and again and again.
Repeating repeating repeating.

Over and over and over.
Again and again and again.
Repeating repeating repeating.

Over and over and over.
Again and again and again…

For as long as I need.

Sometimes twenty minutes.
Sometimes half an hour.
Sometimes even longer.

Sometimes gentle.
Sometimes almost violent.

What started as way to relieve anxiety
Becomes a beautiful pleasure.

My head clears.
I feel better.
Grounded.
Comforted.

Happier.
Calmer.

I flap my hands.
I twirl my fingers.
The filtered light dances before my eyes.

All this completely natural to me.

Even after decades suppressed.

It is only one step away from breathing.

Calming Tactics

11-2016-12-15-17-49-32My head.
In a bad place.
Jumpy. Edgy. Like an engine misfiring.
Out of sync.

I rub my face.
Move my legs.
Rock.
Arch my back.
Fidget.
Scratch my head,
Trying not to do too much damage.

The stress triggers an asthmatic cough.
I feel sick.

But.

I am at home. Safe.
So I can press my head into a cushion.
Bash my back against the sofa.
Dig my teeth into my thumb.
Flap my hands hard.
Tense my legs repeatedly.

And start to feel a little better.

Meltdown averted.