A queerly autistic rumination on the confusing world of public grief

This isn’t what I was going to write about today.

I had a plan. Or a semblance of a plan. But the world has an awful tendency of getting in the way. 

So this is a waffle. A pouring of words straight from the heart, a conversation with myself in real time; I hope that it will not upset anybody, and I hope that I will have come to a better understanding of my own mind by the final syllable. I will be talking about terrorist attacks and other such atrocities, so please be aware if this may be triggering for you. 

Whenever a turbulent, tragic and tumultuous event happens that dominates the mainstream press, I feel myself feeling more and more detached from the rest of the world. Like I’m an alien in human disguise who temporarily forgets to keep their shields up. And everyone is staring at me, because ‘hang on a second, humans are not supposed to be green’ – but I don’t know how to stop being green.

I’m not going to go into detail about what happened in Manchester this week. A quick go on the Google will bring you up to date, although I urge you not to get too drawn in as I have done – there’s some incredibly harrowing stuff out there, stuff that I don’t necessarily feel should be published by the mainstream news, and that is a wormhole I don’t want anyone dragged into.

I have friends who live in the Manchester area. They are safe. Their friends and family are also safe. I had a brief moment of panic when I heard it was Manchester that had been hit, but they are all okay (as best they can be on an emotional level). Other people were not so lucky.

I’m not going to talk about that at length. I’m not going to talk about the politics of it all, the bigotry I’ve seen, the humanity and diversity of Manchester coming together (please do look that one up – Manchester is diverse and wonderful and amazing and will not be turned on their own neighbours, and they have displayed every single ounce of soul and goodness that I already knew they had). I don’t feel it’s my place. I’ve made calls on my social media for people not to be divided, for people to stand up and call out the bigots using it to push their own agenda, but a lot of this has been by sharing posts from amazing people who are lot more knowledgeable than me.

What I want to talk about is the sense of alienation I always feel with the majority of the population when something like this happens.

I don’t mean in terms of the togetherness I have mentioned above – I very much feel a part of that – but I mean in terms of the ways that I see people reacting away from the main event, the directions and angles of the grief, and the struggle I have in connecting with it.

One of the main accusations that is levelled at us, the Great Autistic Hive Mind (please note that this phrase is dripping with sarcasm) is that we do not feel emotion or have empathy. I would like to say from the very beginning that I categorically dispute this, as I know that I do not conform into this terribly broad assumption. I am not a representation of every autistic person out there (neither is any autistic person a representation of anyone but themselves), so I am sure there are many autistic people with these traits (there being nothing inherently wrong with them), but again and again I have seen these stereotypes dashed by the autistic company I keep.

For me, emotion is like another sensory sensitivity. As I struggle to filters out sounds, light and smells, so I also struggle to filter out emotion. I am flooded with different and often conflicting emotions on an almost minute-by-minute basis, and often the strength of those feelings is enough to bowl me over backwards. However, the sources of those feelings are not necessarily always ‘logical’ – for example, I was so distraught when my favourite fictional died that I almost had to have a day off school, but barely shed a tear when my grandfather died.

Some people therefore interpret this as ‘heartless’. Anyone who has ever known me well will find that statement hilarious. If I feel it, I feel it more intensely than anyone could ever imagine. If I feel it, I will rage and kick and scream the building down. The problem is that what makes me feel doesn’t always necessarily make sense to large swathes of neurotypical people (and, I would guess, some neuroatypical people as well).

I can’t control what makes me feel any more than I can control my impulse to breathe.

So, when the awful events in Manchester happened, I was affected. How could I not be? I love Manchester – I go there regularly with my lovely Northern friends, I adore the diversity, the feeling, the friendliness, and the complete lack of raised eyebrows or batted eyelids when I waltz around in whatever strange and often non-matching get up that took my fancy that morning. I think queerness, diversity, socialism, progressivity, nerdiness and alternative fabulosity when I think Manchester. My heart ached to see Manchester, and the people (including my friends), reeling from the shock and pain.

However, I could not wrap my thought-processes around why this attack was so much more devastating than other atrocities I had seen in the previous weeks and months. I couldn’t understand people lamenting at what the world was coming to, when, as far as I could tell, the world had been pretty awful since the beginning of ever. Was I wrong? Was this so much worse? Why were people in so much more pain? Why were these deaths more important? Why did everyone act like human beings haven’t been finding new ways to slaughter each other’s children for thousands of years? Acknowledging the above did not make what had happened in Manchester any more or less atrocious, so why was it an issue?

Dozens of refugees, mostly toddlers, just drowned in the Mediterranean. Dozens of children were just killed by a suicide bomber in Syria. Two explosions rocked Jakarta. But I did not see world capitals laying wreaths, projecting country colours onto monuments, or issuing statements of solidarity. Were the children and people killed in such-and-such an attack or tragedy not as innocent? What was I missing? Everywhere I looked, people were sharing posts with balloons on for Manchester, people were sending their prayers (another thing that baffled me, because what good are they, particularly when I knew many of these people were not actually religious in any way) and, it seemed to me, almost jostling to prove who could show the most grief and sorrow.

People were swelling with an outpouring of almost regimented grief that I felt cast to the side of; watching with a furrowed brow, scrunching up my face as I tried desperately to march in time, going red and tearful with frustration as I failed to keep step. There was a basic language barrier between me and the rest of humanity (so it seemed to be befuddled mind). And it couldn’t be broken because I fundamentally didn’t (and don’t) understand.

When I was learning to drive, many inglorious moons ago, I struggled desperately to understand how and when to change gear. No matter how hard I tried, or how many hours I spent practicing, I simply could not get my feet to press the correct pedals in the correct order. After some incredibly frustrating lessons, my instructor made a breakthrough – he explained exactly what happened when I press those pedals, showed me how doing it in that order made it work, and laid out to me why the things I needed to do served to help the car change gear.

From that moment on, I had no problems. I understood the how, what, and whys of changing gears. I knew why I had to do what I was being told to do. The barrier to my understanding had been broken.

This is not a driving lesson. And the events in Manchester are not a gear change.

But the point stands. Only this time, it cannot be explained to me in simple mechanics. So I have accepted that I may never understand. I have previously attempted to address this with people (following similar incidents across the world), as the way my brain was processing these events felt justified and normal. I soon learned to keep the majority of my questions and feelings inside, for fear of being judged as heartless, cruel, and alien. How dare I ask people why they were so much more upset about such-and-such a thing than this other equally (or even more) devastating thing? What kind of monster was I?

For others, the socially acceptable responses seemed so innate and ingrained and easy to draw upon – for me it was a challenge, as I responded no differently to how I responded to other such events across the world. If I had personally known someone caught up in it, my grief would be specific and personal – but I didn’t know anyone. So why would my response be different than it had been to all these other disasters? Yes, it was closer to home, but the devastation was no more or less real? It made no sense for me to do otherwise, and it still makes no sense.

I’ve come to accept that this is something that I will always be faced with when the situation (inevitably) arises.

And maybe that is a good thing.

Maybe my brain, and the brains of others like me, process it in different ways in order for there not to be an overriding consensus in reaction to devastating events. Maybe the world needs neurodiverse thought processes in order to explore every angle of the human experience, to investigate every viewpoint of a situation, to create a fully three-dimensional image of every act and event and emotion. As me and my friends (who often find themselves in a similar cycle of non-comprehension and confusion) discuss this in private chats and hushed whispers over hot chocolate, maybe we are disallowing a universal response and experience – and, in doing so, allowing for a different angle and perspective that is important to consider.

Maybe, instead of being lost and confused, we should be proud.

Maybe I am not a monster. Maybe I am not heartless.

What I am is my own mind.

What I am is the actions that come from this mind.

And what I am is the path I then choose to follow.

This post is dedicated to those lost in Manchester, in Syria, in the Mediterranean, in Jakarta, in Paris, in Brussels, in Turkey, in Norway, in Iraq, in Afghanistan, and all of those caught up in other horrific events we have seen unfold over the years. I cry for each and every one of you. You all deserved so much better. You will never be forgotten.  

 

General Election 2017: You deserve to be heard

Today is the last day that you can register to vote in the upcoming General Election.

I know that many people, particularly young people, feel desperately disenfranchised, forgotten and ignored. The system feels rigged so that any small act of rebellion, such as voting against the status quo, is snuffed out. Many people do not feel compelled to register to vote, as they do not feel their voice will be heard either way. No one cares. Nothing will change. Why put yourself through the agony of all that?

I’m not going to shout at you, chastise you, scream that people died for your right to vote and you should be exercising it to respect those who laid their lives on the line for your priviledge.

I’m not going to do that because I understand.

But I am going to urge you to take a deep breath and register anyway.

Let me tell you a little bit about my story.

I was eighteen when I voted in my first General Election – I was excited, belligerent, idealistic and determined that this was a chance for me to make a small change in the world. I was drawn to the Liberal Democrats, as they were the only party that seemed to offer an alternative to the status quo that I agreed with, and there had been surges in support for then leader Nick Clegg following some pretty good live television debates.

So, on the day, I held my head high, walked in with a mission and cast my vote – on leaving the building I felt renewed, refreshed with a sense of vigour and conviction that I had had a small role in making the country a better place.

Then everything went wrong.

The Conservatives came first, but not enough to have a majority. The Liberal Democrats came forward and formed a coalition. A package of austerity and the foreboding sense of rising inequality was on the horizon. University fees were tripled almost immediately – as a first year student, one of the main draws of the Liberal Democrats had been their pledge to end exorbitant university fees, and their capitulation on this massive issue was like a slap in the face with a wet fish.

My vote had achieved nothing. I lived in a Conservative safe-seat, and, much as predicted, my local Conservative MP got back in. My area was declared for the Conservatives. It felt as though my vote had simply been flushed down the toilet. The world was falling apart, and there was nothing I could do to stop it.

As the next five years dragged on, I found myself becoming more and more despondent. All around me, I saw people suffering in the wake of austerity policies. I saw my disabled stepmum going through hell as she fought a system that was determined to label her as ‘not disabled enough’ to be worthy of the financial support she deserved. I was furious. I was angry. I felt as though the only way to change anything was to burn the system to the ground or die trying. Who cared about voting? It didn’t mean anything.

As the 2015 election reared its ugly head, I couldn’t bear to be a part of it. Every bit of coverage felt like a drip-drip-drip of water torture on my forehead. I wanted it to be over. The Conservatives would retain the seats in my area or, if they did lose, it would be lost to the likes of a far-right party such as the UK Independence Party. My vote? My poor little angry left-wing progressive vote? It would be lost on a turbulent sea; barely even a pinprick on the awareness of the people who were smugly surveying their domain.

I voted Labour. They didn’t particularly inspire me. In my mind, their ideas were not nearly radical or progressive enough. Amd I knew it would do nothing. I knew that Labour were not going to get my local seat. I knew that the Conservatives were probably going to get an outright win.

But I couldn’t not vote.

If anything, it was only so I could stamp my feet and gnash my teeth whilst obstinately proclaiming well I didn’t vote for this!

But, whatever reason I did it, and however drab and awful I felt during and after it, I am absolutely glad that I voted.

I have a voice that deserves to be heard, and, even if the system we work in is determined to stifle that voice, to not vote would have been to stifle my own voice. And I was going to fight against the gag kicking and screaming and biting and gouging.

This year, it feels as though there is a real alternative. For the first time in a very long time, I feel emboldened by what I am seeing on the left of politics in this country – there is a manifesto that I support, with policies I vehemently agree with, and I am encouraged that this may be an opportunity to change things. Where previously I voted for Labour because my mantra was ‘please god anyone but the tories’, this time I want to vote for Labour because I believe in them. Where I work, I get calls every day from desperate people, who have been at the front and centre of cuts, oppression, and the cruelties inherent in the dogma of austerity. These are some of the most vulnerable people in our society, and they are being failed. This feels like a chance to not fail them any more.

Voting won’t change things overnight. I am still a strong believe in angry, direct action. I believe in taking to the streets, in chaining yourself to railings, in screaming at the top of your lungs until someone listens to you. A friend of mine, and others, recently broke into an airport and chained themselves to a plane to stop a flight chartered to deport asylum seekers in the dead of night. They were arrested, but they shone light on an atrocity that very few people knew about, and, at last known, more than half of the people scheduled to be on that flight have not yet been deported. I have never been more proud, or had it made clearer to me that direct action works.

But voting is important too.

They exist symbiotically. And whilst the system may be skewed, there is always a chance that something good could happen. Trump’s win in the US was not expected. Brexit was not expected. A Labour win next month would not be expected – so maybe that’s why it could happen. But it won’t happen if the unheard voices don’t speak.

I know that not everybody can vote. I know that it may be too much. I know about social anxiety and energy and poverty and disability. I know that voting is a priviledge that many are still denied access to. Which is why it is even more important that those of us who can vote, do vote.

know why people are not registering to vote. I know that hopelessness. I know that feeling of utter impotency in the face of forces you could never hope to stand against and survive. These feelings are real, and awful, and painful, and legitimate.

But I urge you, as someone who has been in that place – please register to vote. Please don’t let them silence you. Your voices are strong and beautiful and wonderful and deserve to be heard.

No matter how well they swaddle their ears and pretend not to hear, they cannot block out the vibrations of our screams forever. And no matter how awful and despondent you may feel if you vote and the outcome is not favourable, it is nothing compared to the trauma of thinking ‘but what if?’ 

So please, visit this website: https://www.gov.uk/register-to-vote .

Have your National Insurance number to hand, and register. You have until 23.59 this evening to demand that they listen to you. It will take a few minutes.

But the repurcussions could last a lifetime.

 

The Inevitable Fidget Spinner Post

“If I have to read one more post about those bloody fidget spinners I’ll…”

Tough.

Hi, my name is Queerly Autistic, and I am in love with my fidget spinner. I adore it. My family, my friends and my work colleagues have become very well adapted to the soothing whhhiiiirr of this weighted whizzing slice of sensory heaven. At the end of the day, the tip of my ring finger, as well as the pad of my index finger and thumb, tingle pleasantly from the weight of a million constant rotations. If I twist my hand ever so slightly whilst it is spinning, the pressure against my fingers and the weight of the toy is so fabulously wonderful that I will happily go about the rest of my daily tasks with one hand weaving in an endless dance of joy.

Fidget spinners are, we have been led to believe by the press, the new thing. All the kids are doing it. I’ve even heard on the grapevine that there are tricks you can perform with them – even further on down the grapevine, I heard that there were whole tutorial videos on YouTube detailing what amazing feats you can achieve.

And there are some pretty decent pluses to this sudden surge in popularity for what is, essentially, a stimming toy.

For one thing, they are now readily – and cheaply – available. So many stim toys I have sought over the years have been desperately expensive, and I have had to sit back and be half-satisfied with my poor wad of Blu-Tak. Now, I have been able to get hold of a pretty good quality stim toy – one that is incredibly effective for me personally – for less than £10. I would say that that is a huge bonus; many autistic people cannot afford the £40, £50, 75 and beyond that the things that would make our lives easier often are, so to have something like this brought into the main market, made so accessible, is wonderful.

When the local corner shop sells stimming toys that previously I would have had to trawl the internet for, that is incredible. 

Another hugely positive repercussion of this mainstreaming is the mainstreaming itself. Previously, if I had been outside with a stimming aid, I would have been extremely conscious of the judgemental looks and quizzical stares that I knew were coming my way. But now? Suddenly, I’m seeing people with stimming toys everywhere. Neurodivergent people can have the aids they desperately need without people giving them a second glance – they have become normalised, a fact that also enables people who do not wish to disclose, or people who are currently undiagnosed, to access these things without anyone demanding the whys, whats and wherefores of having them.

It is no longer something that shines a spotlight of ‘wow, this must mean you are different.’  And, especially when you are a child, this may be the difference between having a target painted on your back or managing to pass by the bullies unscathed.

However, a downside of this surge in popularity is the inevitable: schools have started to ban them. This is not a new phenomenon – in fact, I think every single ‘craze’ that went through my primary school eventually ended up being banned for some reason or another.

But this isn’t just another ‘craze’.

The loss of these aids could be hugely detrimental to some students. Whereas before they may have been viewed with suspicion and judgement for having a stimming toy, now the judgement is gone but so has the accessibility of the stimming toy. The more I sorted through the essence of the issue in the mind, I was able to come up with three clear and equally devastating consequences of blanket school bans on fidget spinners:

  1. Neurodivergent people who need them will have to fight for permission to use them.
  2. Neurodivergent people will be forced to disclose that they are neurodivergent to everyone simply by being given permission to use them.
  3. Undiagnosed neurodivergent people will have access to vital aids completely denied as they will not be able to bring the proper ‘neurodivergence card’ to get permission to use them.

These are all very bad things.

In fact, I began to see reports of bans that were beginning to spread – one school praised some of their ‘amazing’ students for requesting that the fidget spinners be banned, and then went on to say that it would not impact the neurodiverse children in their school because they would still be allowed to play with Blu-Tak.

As you can imagine, this attitude struck my ‘nope’ button so hard that it activated every single switch in my body, sending a wave of indignant rage spewing from every conceivable pore: neurodivergent kids were suffering and we needed parents to ‘STOP BUYING YOUR NEUROTYPICAL CHILDREN STIMMING/CONCENTRATION AIDS AS TOYS’. It was a knee jerk reaction from someone who has been that child, who has been that adult, who has desperately needed just the smallest of aids but has been unable to access them. The thought of smaller versions of me finding solace in these spinning wheels of joy, and then having them snatched away because other children were using them as toys in school, made my heart hurt and my blood boil. And I exploded. All over social media.

This could have been embarrassing. But it wasn’t. This was a good thing.

People talked to me. People from different sides of the argument; people with different solutions; people with different experiences and stories that all came together in a wonderful show of diversity and divergence.

And I realised that this is not the answer.

Neurotypical kids seeing stimming/concentration aids as normal parts of life is a good thing.  If children are enjoying these items as ‘normal’ toys, it can also be explained to them why, for some people, it is so much more than a toy. This is a chance for education amongst the most malleable and absorbant of minds.

This is a chance for kids to understand. This is a chance to create a generation of adults who understand. This is a chance to change the culture from the very roots. This is a little, almost subterfuge way to stop any other people going through what I went through in school.

There are, of course, stipulations in my new trail of thinking: mainly, that parents who buy these items as toys, and whose children are clearly using them as toys, should firmly discourage that these children bring the items to school. Or, if this fails, schools should take more precise and invidualised action – for example, taking them away just from children if they are doing anything other than quietly spinning, rather than sweeping through the building like a hawk snatching any and all fidget spinners from unsuspecting little fingers.

I don’t know if this is possible.

There are many people out there with more informed, more knowledgeable, and more eloquent solutions than I can ever bring forward. I would encourage everyone to seek them out. Be hungry for neurodivergent voices speaking on neurodivergent issues. Devour every single sentence.

I don’t know, ultimately, what the answer is.

But I do know that I will keep spinning.

For every person who complains on social media about how annoying they find this new fad, I will shoot back that the gentle spinning of the little plastic instrument is a lot less annoying than a twenty-five year old woman descending into meltdown in a public space. For everyone rolled eye at the whisper-like whhiirrr between my fingers, I will gaze back with the knowledge that this is at least 37% less irritating than me tapping my foot incessantly on the floor.

For everyone who complains that their day is slightly ruined, or in some way inconvenienced, by the dark shadow of an evil fidget spinner, I know that I have avoided a day for myself that ends in overload, meltdown, and shutdown. I know that my dogs won’t be anxiously trying to comfort me; I know that my family won’t be struggling against me as I lash out verbally; I know that I can come home, and smile, and talk about my day, and then calmly go to bed ready for the next.

And I definitely care more about that than I care about your opinion of my fidget spinner.

The cold always bothered me anyway…

I lied. Today is not Monday.

However, I am consoling myself in my failure, telling myself that what should have been my Thursday post was two days late, so what should have been my Monday post is one day late. I am gradually making up the days until this Thursday’s post is actually delivered on an actual Thursday. Like the way the council does the bins after a public holiday. Just think of me as the refuse collection service of fabulous queer autistic blogging.

So, putting that marvellous analogy to one side, I would like to discuss something I recently discovered about myself (that I had somehow managed to miss for twenty-five years.

No, not that I’m clearly absolutely unable to stick to self-imposed deadlines.

I am hypersensitive to the cold.

It’s not that I hadn’t realised that I was cold. I always knew that cold was my enemy. I am the person that colleagues, friends and family walk past exclaiming “how are you still wearing a jacket/cardigan/dressing gown/pikachu onesie?!” I am the one who vetos any suggestion that we get one of the outside seats when eating out; the one who will whine like a small child at being outside for too long because my toes are falling off; the one will accidentally cost her family a fortune because she thinks nothing of turning the heating up so far that lava begins to seep through the walls.

I’ve always known I feel the cold. I had just never thought about in terms of those wonderful labels that started clicking into place once I got my diagnosis. It had always remained one of those abstract quirks that was annoying, but never particularly overthought in my mind.

It wasn’t even a creeping realisation that this may be an autistic thing. It was sudden, like I had been slapped in the face with a wet fish. A very, very cold wet fish.

At work, I sit in the main reception. That is where I am based full time (apart from breaks, lunch, and, obviously, hometime), so, during the year, I get the full force of any weather that happens to be headed our way. Usually, it can be mitigated with good old fashioned 21st century heating. However, during one particularly arctic snap in the middle of April, I met my icy match.

My workplace strives to be as environmentally friendly as it possibly can, and, as such, when April rolled around the main heating was switched off – in essence, going into its hibernation during the warmer months, all ready to wake up and save us all in October.

The only problem was, on this occasion, it was not April weather.

It was freezing.

The cold cut me right through to my core – I could feel it like an icy grip in my bones, snaking up through my spine and enveloping my brain in a mist of freezing fuzziness. My colleagues were worried about me. I was barely firing on 25% of my cylinders; I was shaking; I was pale; and, to be honest, my closest colleague was concerned at how badly I was reacting to being that cold. Up until that point, I had always perceived myself as having an only-slightly-stronger-than-average reaction to cold temperatures. But, when it was pointed out to me by an outside person how violent my body was responding in contrast to everyone else – they were cold, that’s true, but they weren’t anywhere near that cold.

That was when I started to think that it was something more.

I have always described my sensory sensitivities in terms of overload: there’s too much noise and I can’t filter it out, there’s too much light and I can’t filter it out, there’s too many emotions and I can’t filter them out. That is how I experience my sensory overload. I can’t speak for the whole autistic community, but I do know that I have bonded with many other autistic people over this common experience.

And when I started to think about it, the way I was experiencing this cold was exactly the same.

In fact, I find it so difficult to filter out cold temperatures that I will swaddle myself in blankets and dressing gowns to the detriment of my own health – in the same way that I am hypersensitive to cold, I am hyposensitive to the heat and struggle to recognise when I am overheating. I will wear long pyjamas with a fluffy blanket in the middle of August, and I won’t realise that I should rethink this until I try to stand up and find myself feeling dizzy.

Being the intrepid explorer of the internet that I am, my first port of call once I had recovered from the cold (and even after the heat went back on, it seemed to take hours before the arctic chill was chased from my bone marrow) was to have a look and see if there were any other people experiencing this same thing. I struggled to find any articles in the same depth as I had seen on the more ‘traditional’ elements of sensory overload (sound, sight, taste, smell etc.), but, once again, I found a discussion on Wrong Planet in which I found myself nodding frantically in recognition. 

It seemed I was not alone in this. And that drew back the curtain even more, granting even more clarity to a situation that was becoming clearer and clearer.

I also found two other articles/posts which mentioned hyper/hyposensitivity: this one, using the refusal of an autistic child to wear a coat as a basis, and this one which includes temperature on its list of sensory sensitivities that may be experience.

(Please be aware that these links focus almost entirely on autistic children, and are aimed at parents of autistic children rather than autistic individuals themselves. I have my own issues with this, but this is neither the time nor the place – for discussion of the issue for autistic people by autistic people, the Wrong Planet link is the way to go.)

The impact of this sudden understanding, of suddenly having clarity on something that I had endured but not really considered for twenty-five years, is not trivial. In a flash, I was able to speak to my work coach and my line manager and ensure that steps were put in place to avoid such a situation happening again – at that moment, it was on my record that the extreme discomfort and distress I experience in the cold was a sensory sensitivity, and in that way I could request reasonable adjustment to make sure I could do my work in the best possible environment. For anyone who has been in a position of not having those adjustments, however tiny, in place, this is a massive thing. Not just massive physically, but emotionally. I felt safe; I felt that I didn’t have to be afraid of being dragged into a situation where I could not function to the standards I hold myself to in the work environment.

That is everything. 

This is why diagnosis is so important. I have had people ask me why I pursued an assessment for autism so vigorously – why did I kick and scream and fight for it, why was it so important, after twenty-five years, to have that label slapped on me? What different did it make? What would it change?

It changed everything.

Even if the support was not automatically available, and many more fights were to come, I came to an understanding of myself. The things that I had quietly accepted but not understood began to unravel and knit back together into a pattern that made sense. I knew myself in a way that I had not known myself before. And now that I finally knew myself, I could also begin the journey towards finding out exactly what it was that I needed to live my best possible life.

This is why I will continue to fight for the importance of accessible diagnosis – particularly to adults, particularly to adult women. We deserve to understand ourselves enough to work out what we need. We deserve to know ourselves confidently enough to be able to ask for what we need – we deserve to have a strong enough grip on our own selves to stamp our feet and demand that we are treated with the respect and support that we deserve.

This was just one realisation, about one sensory sensitivity, about one aspect of myself that I had previously overlooked.  But it is about so much more than the cold.

It’s about being able to arm myself with the tools to keep myself warm.

The thrilling adventures of Queerly Autistic in…a shopping centre

Self-discipline. That is a thing I apparently do not have.

But no more! The thrilling tones of superwoman and all-around awesome funny-woman-on-the-internet Lilly Singh have served to knock firmly against my skull and stick a proverbial rocket up my proverbial backside. I have just downloaded the audio version of her book, How to Be a Bawse:  A Guide to Conquering Life, and it is full of tips and steps on how to get where you want to be – in my case, the most important passage waxed hilariously and poignantly on the importance of self-control, discipline, and deadlines.

So, I am going to set myself up a blogging schedule.

Seeing as Lilly herself is the inspiration behind this attempt at self-governance, I shall follow in her fabulous footsteps and commit myself to publishing a post on Mondays and Thursdays. This is writ in ink, in pixels and in annoying-phone-alarm tone, to force me to work to a deadline, stick to my schedule, and fulfil the promises that I have made to myself.

(I am aware that today is Saturday, but I hadn’t made a definitive decision on Thursday, and if I didn’t get it written down I would definitely have redecided, chickened out, or just plain forgotten by Monday – I have made an omnipotent authorly decision that today is an honourary Thursday)

So. LET US BLOG.

At the weekend, I had some very interesting, positive, negative, stressful and exhilerating adventures, in a most exotic location – my local shopping center and town centre. This is not a place that one would traditionally look to find an expedition fraught with danger and excitement, but the neurodivergent mind is not a great friend of tradition.

By the weekend, I am typically burned out and in need of some recuperation. As I am also currently studying to complete an online course (my perpetual hunger to learn without actually having to be in education coming through here) I have a particular routine that gives me the space to do fulfil these two needs. I go and sit in Starbucks for three hours.

Now, anyone who knows me will understand that I am what you may call a ‘rampant idealistic socialist’, so it brings shame upon me that this of all places would be my safe space. How very corporate and capitalist and tax-avoiding and OH MY GOD WHAT ARE YOU DOING WHAT ABOUT YOUR VALUES. However, it is so, and I cannot change it. There’s something about the combination of the colours (muted greens and browns, never too over-the-top), the music level (softly in the background, never too loud), the space (in which you can tuck up and avoid human contact), the staff (who somehow always remember your name and order so you have to partake in very little human interaction), and the fact hot chocolate is the only drink other than water that I can stomach and Starbucks hot chocolate is one of maybe two versions of hot chocolate I deem acceptable to consume – this all leads to it being my guilty-but-nevertheless-safe space to crawl into and have study-and-downtime.

Last weekend, however, I had a task added to my list – I needed to go into the bank and set up a standing order.

As you can imagine, the terror of such a thing was immense. My banking app had failed me, and only face-to-face human contact would prevail. Being the organised and efficient individual that I am, I of course stayed sipping my hot chocolate for far longer than was necessary, and only left myself fifteen minutes before I needed to leave and go to choir. As I took a breath and stepped out towards the bank, terror gripped my heart. I had no idea what I was doing. Where did I need to go? How should I phrase the question? What if they weren’t friendly? What if I accidentally robbed the bank? In the midst of this anxiety, I did the one thing I know how to do.

I called my mum.

She is brilliant. As I stood outside of the branch and hyperventilated, she talked me down gently, explained exactly what I needed to do, and then promised to stay on the line as I took a breath and crossed the threshold into the bank. I could hear her softly talking as I approached the gentleman at the ‘here to help’ stand, talking me through what I needed to do, and…I did it.

There were a few hiccups. The moment when I needed a code I couldn’t remember to log in was a relatively hairy moment on the grand scale of things, but the helpful man who had popped out to give me some privacy just as quickly popped back in to help me look up the all important string of numbers. And then – as if someone had uttered a magic word – it was all done and I was ready to go. Hurrah!

As I strode out of the bank, my phone now switched off, new standing order gleaming in the ether somewhere, I felt an overwhelming and somewhat-pleasurable sense of adulthood. In that moment, I believed that I could survive in the big, wide world, because I was adult enough to do bank-type things.

I was proud of myself. I learned long ago to not be ashamed of the things I call victories, and to recognise the magnitude of achievements on my own barometer rather than anyone else’s. We each have our own levels and experiences on which to measure these things. What is a victory to me may be a simple, every day task to someone else. And we are allowed to be proud of ourselves for our own small triumphs.

Feeling warm from this inner glow, I made my way to the ticket machine to pay for my parking – as things stood, I was not going to be as late to choir as I had feared, so I should be able to slip in and pick up without too much trouble.

And then I rummaged in my pocket.

The second pound coin I thought I had transferred to my pocket was obviously still languishing in my car door pocket.

Dammit.

I took a breath. It was okay. My car was a little way away, but if I hurried, I could collect the money, run back, pay, run back again, and still not too embarrassingly late. It was doable. It was. I was glowing. I was an adult. I achieved things. So I pushed ‘cancel’.

The pound coin I had previously slotted into the machine clanked noisily into the tray at the bottom.

My ticket, however, remained sucked into the depths of the contraption.

Another breath. At this point my heart was pounding. Now I was going to be very late. I needed my ticket to get out of the car park. I had done the right thing. I had been in control and things had still gone wrong. The anxiety from before I went into the bank began to knot itself in painful loops in my stomach. With panic on the edge of boiling point, I slammed my hand into the ‘help’ button, hoping to retain my sense of adultiness long enough to ask for help and get the situation rectified.

When a voice came over the speaker, I explained my predicament – that my ticket had not been given back to me after I tried to cancel the transaction.

“What d’you press cancel for?!?”

I don’t know whether it was the temerity to question what I had deemed to be a perfectly logical action on my part. Or whether it was sneery, almost incredulous tone, as if I had just told him that I had attempted to fill the machine with beetroot and then called him for help when it gave me red juice instead of my ticket back. I don’t know whether it was because I had clompy heels on so I wouldn’t even be able to sneak quietly into choir as I arrived shamefully late.

I lost it.

Bursting into tears, I wailed that it was because I didn’t have the correct change. I sobbed as he sighed and told me to drive around to the front and pay there. I wept as I got back into my car and tried to navigate out of the car park.

I was hyperventilating almost when I jerked the car into a corner, yanked the handbrake, pulled out my phone, and, once again, did the only thing I could remember how to do – I called my mum.

To put it succinctly (don’t laugh), I didn’t go to choir. I calmed down enough to drive home, at which point I grabbed some chocolate, my face still wet with tears, still struggling to get my breathing under control, crawled into bed, and let myself be smothered by two very excited and worried puppy dogs.

I did nothing for the rest of the day.

And so that is that.

The thrilling adventures of Queerly Autistic – behold as she bravely dodges crushing responsibilities, traverses deadly social interaction, and finally navigates her way back, injured and bruised yet still fighting, to bask in the adoring (furry) crowds of home!

Coming soon!

Because this will definitely happen again if she continues to go outside!

Don’t forget to tune in on Monday for more enthralling and game-changing content.

 

CSP – my incredibly unsexy stim

Please note that in this post I discuss a stim that could be construed as a type of self harm. If this could be triggering for you, please approach with caution. 

So, the last few weeks have been a serene and peaceful time filled with birdsong and bunnies and holding hands and rainbows and me lying about how serene and peaceful everything has been.

I may also have been lying about birdsong and bunnies and hand-holdings and rainbows, but there has definitely been quiet weeping in the corner.

The last few weeks have been horrifically stressful, on a personal, national and international stage. I am loathe to go into further details at this point – we could find ourselves going around in increasingly dingy circles as we remind ourselves of the awfulness and uncertainty that pervades the air like a noxious gas. I would, however, like to talk about one of my own particular, personal responses to this prolongued exposure.

Most of my stims are adorable. I place this squarely at the feet of the fact that, quite frankly, I think I am an adorable person. They come in a range, from foot tapping, knee jiggling and hair fiddling to scarf flicking, fidget-toy playing and carrying around an assigned anti-anxiety soft toy. However, I’ve found myself being drawn back into one of my only so-called ‘bad stims’ – the only one (aside from chewing my tongue, which was something I did as I was much younger) that actually causes me some sort of physical harm.

Skin-picking.

I’ve never talked about this particular stim before, or considered it as a ‘stim’ in the same way I class my other stims. It’s one of those ‘ew gross’ actions that you try to keep hidden from the rest of the world. I’ll go to exorbitant details about my other stims, and how they help me to cope, or how to re-channel them into something more appropriate for a particular circumstance. This one is my ‘dirty little secret’. With the turbulence I’m currently caught in, both emotionally and politically, I decided to finally look this issue square in the face, and, in the process, do some learning for myself.

It’s not something I had ever looked into before. It was always something I had done with no understanding of the hows, whys or whats of doing it. So I decided to take the first logical step in understanding this elusive and ouch-making ‘bad stim’ – I consulted the Google.

‘Compulsive skin picking (CSP) is characterised by the repetitive picking of the skin to an extent where damage is caused…Individuals affected by CSP may start by picking at normal blemishes such as freckles or moles, pre-existing existing scabs, sores or even acne blemishes. They may also pick at imagined skin defects that nobody else can see. CSP can also be known as ‘dermatillomania’ or ‘neurotic excoriation’. It is often categorised as an impulse control disorder under the Obsessive Compulsive Disorder (OCD) Spectrum as the skin picking is often repetitive, ritualistic and tension reducing.’
 – Anxiety UK

And there it is.

My particular brand of CSP is centered around spots. I fulfilled many stereotypes of the ‘greasy awkward teenager’, one of these being relatively severe acne that afflicted me throughout my adolescence. My mum had a habit of cornering me to squeeze some of the more prominent ones, sometimes pouncing on me the moment I got home from school, and as I got older I taught myself how to effectively do this on my own. From that point, as they say, I was hooked.

As my acne cleared up with miraculously little scarring, my need to squeeze did not abate. Instead, any vaguely widened pore became a target. Although for a while the focus of this was on my face, I soon migrated to my upper arms and chest – these areas are more easily covered, so I can pick away without the sense of embarrassment that having a perpetually potholed face can bring. In fact, I would often find myself squeezing healthy pores, which consequently led to damage and infection that produced actual spots for me to attack.

This particular tidbit from AnxietyUK struck a very tender nerve :

‘While CSP can be the result of a conscious response to feelings of anxiety and depression it can also be an unconscious reaction. Sufferers can enter a trance like state and pick at the skin without being fully aware of their behaviour, only to be confronted by the results of what they have done afterwards.’

This is an almost perfect summation of my squeeze-sessions. It will start with a quick pinch to try and relieve some tension, and the next thing I know I have been standing there for up to forty-five minutes and the skin of my arms and chest is red and pitted. And, to top it all off nicely, my dogs are looking at me disapprovingly; my foray into minor self-mutilation has delayed their bedtime and they are thusly most unhappy.

This moment of recognition reminds me of the first time I looked up what it meant to be ‘autistic’ – seeing myself described in actual words, given a name, diagnostics, structure, everything that I had ever wanted to understand myself.

Although very few of the sites I have explored have addressed autism and stimming, I can’t help but feel there is a connection. One of my searches took me to an all-too-brief informal discussion on the topic on Wrong Planet, which seemed to suggest that there are other autistic people experiencing this and counting it amongst their stims.  After all, my CSP links to my anxiety, and my anxiety is inextricably intertwined with my autism. Would anxiety dominate my life in such a way if I were neurotypical? That’s like asking me what would change about my life if I were to have blue eyes instead of green-brown-hazel-no-one-quite-knows-exactly eyes. I don’t know, because it’s a part of me, and I have never known any different. My autism is intrinsic to my being. Maybe my anxiety is too.

So, what can be done about it?

(my skin-picking, not my autism – my autism is wonderful and beautiful and irritating and head-scratching and fabulous and heaven help anyone who looks to take it from me)

The long and short of it is that I am only at the beginning of acknowledging that there is a connection between these things. I do not have any answers. Several sources in my internet-trawlings have suggested consulting a doctor; whilst I haven’t done this yet, as the GP is absolutely not one of my favourite places, it may be something I consider in the future.

One thing that I have found helps soothe the urges (something that my doctor probably wouldn’t even think of prescribing) is watch ‘pimple-popping’ videos on the internet. It sounds like an odd hobby, but I have spent many hours browsing for satisfying compilations – these bring the relief of squeezing, without the damage of doing it to myself. One of my favourite channels is Dr Sandra Lee, a dermatologist who styles herself as ‘Dr Pimple Popper’; not only is her work clean and professionally done, but she has a calm and friendly manner which is very different to the sometimes traumatic screaming and retching you find on ‘home-made’ popping videos.

(There has recently been some criticism in her comment section, not just about her techniques but about whether she overstepped a line in her interaction with one patient. I’m not here to pass any judgement on that, as I have no interest in getting involved in that particular brand of YouTube-Comment-Section-Drama; it is just a warning that if anyone is interested in her videos and, like me, is upset or repelled by conflict, it may be best to follow the age old internet adage and do not read the comments.)

So, at the beginning of this post, I promised you rainbows and bunnies and birdsong. Instead, I gave you spots and dermatillomania and pimple-popping videos. As disappointing as this is, it has been incredibly freeing to talk about, and incredibly insightful to research and acknowledge it properly for the very first time. And that’s an incredibly important step – a step that is definitely worth all the rainbows and bunnies in the world*.

*please do not engage the author in arguments about the comparative worth of bunnies and rainbows to this blog post, as she is the author and thusly reserves the right to misuse her omnipotent authorliness in any way she sees fit. So nyer. 

***

If anyone else has any such experiences, or any ways in which they have managed to hold back the urge to pick, pop or squeeze, please do let me know. If anyone recognises these urges in themselves, and is feeling unsure or worries, the NHS has a page on Compulsive Skin Picking (or Dermatillomania) which includes suggestions for what to do next. Please be aware, I have only just started on this journey myself, so am unable to pass judgement on whether any of the solutions offered in any of the links included in this post are helpful

Back to square one?

I didn’t get the job.

I feel like it’s best to rip that plaster off as quickly as possible.

To say I’m devastated would be an understatement. When I found out on Friday, I immediately tail-spun into what can only be described as the biggest meltdown-panic-attack-combo I have had for a very long time.  My diaphragm was quickly in violent spasm, and I was finding it excruciating to talk and even breathe. My body felt like it was completely out of my control – a reflection of how my life and my career felt in that moment.

It absolutely felt like a trapdoor had opened, dropping me down into a cage from which I couldn’t escape. Where should I go now? This is the third role I have gone for internally, and the third I have failed to get. Yet again, it felt like I was being propelled back to the ominous square one. This was the most logical next step. Was I destined to be super-glued to square one for the rest of my life? Am I stuck in a destiny I desperately do not want? What more can I do? Volunteering and internships were suggested in my feedback – but how can I when my working day (including commute) is 6.30-17.30, and when relinquishing some of this full time work is not financially viable?

Add to that the fact that I have a list of people I have now tell that I haven’t gotten it – people who are so excited for my prospects, for whom I have to develop a script that can be repeated again and again. It would be enough to make anyone feel as though they are banging a head against a brick wall – take that and add it to the level of anxiety that I operate at every single day, and you have a recipe for disaster.

My work coach and I had discussed this scenario, in what we termed my ‘Contingency Plan’. The main bulk of it consisted of beginning to look for personal development opportunities outside of the charity I work at, with the view that I could return once I had built up my experience and was able to take on a role that was closer to the career I wanted for myself. However, now that this scenario is a lot more than just hypothetical, my heart feels like it’s being split in two at the thought of leaving.

As I am currently on annual leave for two weeks, I ended up calling the head of my current department, who has also taken it upon herself to be my mentor (personally and professionally), and she spent up to twenty minutes talking me through normalising my breathing. We then spoke briefly about my upcoming options; however, the main focus was on getting through this weekend so I could speak to her next week with a clearer head. I am incredibly lucky to be in a team that has my back in that way, even if it is not necessarily in a role I want to continue for much longer in.

And that’s where the difficulty lies.

I have been in my current role for almost eighteen months. It was always acknowledged that this role (a customer facing role, something which is inherently quite difficult for an autistic person!) was a stepping stone for me, a way to use my current minimum wage experience and build upon it in a sector and organisation that I could be passionate about. My feet are so itchy after eighteen months that I can barely stand still. I couldn’t be more restless if I was tap dancing beneath my desk (which sometimes if feels like I am). So, after three failed attempts at furthering that career, it makes sense to perhaps look elsewhere for that opportunity.

On the other hand, I am so unbelievably well supported in my current organisation – their focus is on autistic people, so I feel like they overwhelmingly understand and have been willing to put so much in place to further my personal development. And furthered on a personal level I have been. I have been given so many opportunities – getting involved with campaigns, being listened to on autism issues, being able to share my experiences with the public, media opportunities, etc. – and these have bolstered me to a point of absolute pride in my identity and achievements. The thought of moving away and losing this support, and also the opportunities that have come my way, is something absolutely terrifying.

I have no idea what I am going to do. This is something that is going to take time, and some serious conversations with a variety of people. My friends have been wonderful, my manager has been wonderful, my mums have been wonderful (even though they are currently on their honeymoon in Mexico). I am very lucky to be surrounded by people who understand, who care, and who can give me insight that I may have lost in the depths of my despair.

There is one thing, however, that I am absolutely certain of in the wake

My dogs are amazing. The eldest, who is nine, stood over my protectively, making sure that he had a paw draped over my arm. The youngest, who is three, immediately took it upon himself to start chasing his tail and playing loudly with his toys, trying to make me laugh and distract from the seriousness and sadness. Even after I had calmed down and made the decision to go to bed, they stayed by my side, making sure I was okay – even if this did manifest in sitting on top of me and digging various elbows/knees/whatever they are on a dog into my kidneys, ribs, and other sensitive body parts.

I have to remember that, no matter what job I have or what job I lose, one thing remains constant.

My dogs? They thing I’m freaking awesome.

 

The Job Interview (aka The Great What If Spiral Of Doom)

Ah, the joys of your entire future spinning on the head of a single one hour snapshot of your life. How fun. How exhilerating. How absolutely-not-stressful-at-all.

Ha. I’m fine. I’m fine. 

I’M FINE. 

In case anyone hadn’t guessed it, I’ve just had a job interview!

*waits for expected applause and congratulations and well-wishes*

Why thank you, that is incredibly kind.

It is for a job at the charity where I currently work, and I am absolutely desperate to get my teeth into the role. I have tried for a couple of other roles in the organisation since I passed my probation period in my current position nearly a year ago, and they’ve all been just slightly out of my reach in terms of experience. I have interviewed for all of these roles. I have been so close, and yet the jump was just slightly too high.

This one? This one I can use my current role as leverage to reach up and grab it. I can balance on the head of my experience, catch this position between my fingers, and use it to start the long climb of the career I long to follow within this organisation.

And I want it this job. I want it desperately.

In the twenty-four hours or so that have passed since I was sitting in that room, no doubt gesticulating wildly to cover my shaking and emphasize my points, I’ve travelled the metaphorical rollercoaster of emotions. From pride in my performance, to the heart-thumping anxiety of running back through every sentence and breath; if you can imagine an emotion, then you can guarantee that it’s been a temporary tenant in my head at some point since my interview.

I actually prefer the lead up to the interview. In fact, I feel as though at that point I have an element of control firmly in my hands. I have the preparation. I know exactly when it is. I can plan for it. I can actually be constructive and do something in the run up to the event.

Once the deed is done, however, I am a mess.

The complete loss of control; the knowledge that there is absolutely nothing at all that I can do in the process; it puts me in a twist. The direction of my professional life – and, by default, a large portion of life as I know it – is utterly dependent on those sixty minutes in that room with those two people. And all I can do now is cross my fingers, hug my dogs, cry into a pillow, eat a sickening amount of chocolate, and wait to see whether this is another misstep or the first tiptoe into a new era.

I adore my organisation. I adore the work, the message, the people, and, most of all, the absolute support they have given to accommodate and bring out the best in me. I do not want to be working for anybody else. I am supported, I am uplifted, and I want to go further and build a career within it. I have to hope that this time, in this place, with this role, my best is enough. Otherwise, I am not entirely sure of what exactly my next steps will be.

Now I’m sitting in bed, buried in duvet, with my phone turned up full blast and sitting beside me, my whole body jumping at every buzz only to realise that it is a social media notification or some other such inconsequential nonsense.  Someone should take a picture of this moment and place it in the dictionary to illustrate the term ‘anxiety’.

*insert stock photo of a blanket burrito*

Please pretend this picture is actually there as I can’t afford actual stock photos. 

Let’s take a peak through the keyhole into my brain, shall we? I would recommend you hole on tight. Are you ready? 1…2…3…

*unlocks the door*

What does this mean? Has it been too long? Is it normal for me not to have heard yet? Does the fact that I haven’t heard yet mean they’ve made an offer to someone else? Should I check my emails? But what if I look and it says no? What if it’s a no and I fall apart? There’s no one at home to bring me down! What if I am stuck at my current level forever? What if I should forget about all my dreams? What if I am kidding myself? What if I actually suck at all things? What if my existence is futile? What if, what if, what if, what if gaaaaaaahhhhhhhh

And I think that’s enough for now.

*locks the door again and takes a deep breath*

There’s no real conclusion to this that I can muster, as I am currently living in a world of half-formed realities and paradoxical make-believe futures. I am wallowing in the ‘what ifs’, and the longer I wallow the more I get drawn to the deep end of the negative space.

All I can do is hold on tight, resist the pull, and try and keep just a finger or a toe in the positive.

And if anyone has any spare chocolate, please throw it my way.

 

F*** April Fools Day

This is the topic that delivered the swift kick to my backside that urged me set up this blog when I did. This is the topic that I have been waiting to write about, the one that has been niggling away and composing itself in the back of my mind for the last few weeks.

To put it bluntly, April Fools Day can go f*** itself.

Now, lets backtrack for a second to more innocent times, and the first time the concept of April Fools Day pierced my life – it was a joyous, wonderful moment, in which my little brother and I squealed with delight at the prospect of being allowed to be utterly silly for a whole day. This joy was, however, short-lived, and I quickly discovered that this interminable day was not about running around like a silly ball of silliness.

I find it incredibly difficult to judge intentions on the best of days, so on this particular day the urge to lock the door and bury myself under a protective force field of blankets is almost overwhelming. I am aware that people lie in every day life. I am aware that they are dishonest, fake and potentially have an ulterior motive. But this awareness does not means I am any good at perceiving it; I have to extra vigilant in every second of my life, to make sure that I do fall into potentially or abusive dangerous situations. This vigilance is borne from painful experience, and it is exhausting on a daily basis. So imagine a day where you are not just vigilant that some people may not be being truthful, but hyper-aware that everyone is making a point of trying to trick you.

It sends my brain into a tail spin.

I can’t even count the number of times I have been drawn in by a ridiculous story on this most hateful of days. The amount of shame and ridicule when people laughingly pointed and mocked my anger at believing that a car company would be releasing a pink or blue model depending on the sex of the latest royal baby (let’s be honest, does this sound too far-fetched for the ridiculous world we live in?). Because people who are pulled in by these pranks are ‘gullible’, have ‘no common sense’ and deserve to be laughed at. Right?

Or, maybe, it’s a little bit more complicated than that.

I hate being laughed at. I have grown up expecting to be laughed at for not understanding social cues and rules (and not having the word ‘autistic’ in my vocabulary to know and understand myself better, I could not find it in me to be proud of these ‘differences’), and can feel my defenses rise whenever a chuckle pierces the air around me. If people laugh in public, I automatically presume that I have done something that should be laughed at. I bristle. My blood starts pumping. It’s a flight or fight response that I can barely control.

I can laugh at myself, if I am with people I trust, if the situation is silly enough, or if everything is clear cut and, hey, I did something super silly that deserves a raucous respond. I do a lot of silly things that are funny. And sometimes I’m even funny when I actually try to be funny (but usually I think of the funny response approximately six months later and have a quiet chuckle to myself at how absolutely bloody hilarious and witty I am)

But being laughed at for falling for a prank is different. It tells me that, no matter how hard I have tried to calcify myself and arm myself and be vigilant, I have failed. It tells me that I am ridiculous, and gullible, and I am someone that people guffaw about on the internet for not ‘getting it’. It tells me that no matter how hard I have worked to get it right, I am still getting it wrong, and that is hilarious to some people.

Imagine spending weeks putting together a piece of work. Imagine working hard, awake at all hours, slogging through to come up with the best that you could possible imagine yourself creating. Now imagine me snatching it from your hand, scanning it with a scathing eye, declaring it unsatisfactory and tearing it to pieces in front of you.

Now you can laugh.

I take people at face value. I am trusting. And, in this way, I am vulnerable. I didn’t understand that when they asked me to play ‘make believe’ when I was ten, they were actually waiting for me to say yes so they could mock me for my immaturity. I believed that my high school friends would not run away and leave me whilst I used the toilet as they had done before, because they promised that they wouldn’t. And these are just instances linked to bullying as a child, and not the myriad of dangerous paths that this level of vulnerability can lead us down. I have been in some incredibly abusive and damaging friendships because I took them as they came, rather than questioning what was underneath.

This is something that exists a very real and prescient danger to autistic people, particularly autistic women. No matter how hard we try and learn and decipher what people truly mean, it’s like a different language with a dialect that changes just as we think we finally understand it.

April Fools Day is a day of high anxiety for me, simply because I am hovering in flight or fight mode for the whole day. I holding on by a thread, just waiting for someone to nudge me ever so slightly into the abyss. It brings back a million memories of bullying and cruel laughter and feeling so damned useless and stupid and gullible.

But, most importantly, I don’t understand it. I don’t understand why it’s funny. I don’t understand why people would do these things. I just do not get it. And that frightens me more than anything.

Running around making nonsense noises and generally spending the whole day being a little bit silly? Now that I could understand (and I may start a petition lobbying the Government to change the rules of April Fools Day and enforce this much more sensible approach).

Be kind to your non-neurotypical friends and family on this accursed day. Stand up for them when people point and laugh because they can’t believe anyone could fall for ‘the obviously fake thing’. Be ready to reassure them that, actually, a lot of these things are dick moves done by people trying to feel superior to others. Don’t post anything important, like a pregnancy, engagement, break up, or illness, because, in the moment, we will forget what day it is and take you absolutely seriously (often to the detriment of our own mental well-being). Tag your posts if you can, so that we don’t believe a completely made-up story about something dreadful and start legitimately fearing for our lives.

Be nice. Be understanding. Be decent.

And please, for the love of every deity that could possibly exist, DO NOT POST SCREAMERS. 

Because, if I die from the shock and terror, I will make it a point to come back and haunt you by hitting you with teaspoons for the rest of your hopefully long and painful life…

…Ha! Joke! April Fools!*

 

 

 

*author is definitely not joking and this will definitely happen so please just don’t post any damned screamers for goodness sake don’t be a dick

 

Brexit: An Autistic Experience

I promised myself that there would be no politics on this blog. Even then I knew it was a hollow promise. But this is something I have to talk about.

Today, Article 50 was triggered, signalling the beginning of the UK’s exit from the European Union. I make no qualms about the fact that I voted Remain. I believe that the European Union has some desperate, unforgivable flaws – but that the repercussions of taking away that security net and outside accountability would be catastrophic at this time.

But I’m not here to talk about why I desperately do not want to leave the EU. I am not involved in the complexities of politics. I don’t understand them to a deep enough degree – there are others out there who will explain everything to a much higher level than I ever could. This post is about what is going on in my head as we hurtle towards this seismic change.

It’s one of my half-joking, half-deadly-serious quips that any country on the verge of implementing such extreme social change should be forced to make sure they have adequate mental health facilities and support in place before taking the plunge. The dance of  dread currently tapping away in my head, and turning itself in knots in my stomach, is evidence as to why this is. I operate on an incredibly high level of anxiety just plodding through my normal, every day life. Something like this, without the correct support and systems in place, could very easily push it to the very edge of complete implosion.

To paint a picture of how I am feeling about Brexit (not literally, as I can’t draw to save my life – you will have to make do with some lovely flowery verbosity): my entire body feels tighter, each muscle contracting as if preparing to flee from a danger that may strike from any corner; my throat also feels stretched, as though I am constantly holding back a cry or a scream; I am stimming more than I normally would in public, playing with my fingers, picking my face and arms (not all my stims are cute), as if I can somehow distract myself enough to make this go away; my brain is a jumble of words and feelings, tripping over itself and under itself and generally completely unable to place itself solidly in reality; I want to claw at my head, throw myself against a hard surface, rip out the noise and fill my body with something other than this feeling.

I have also been disassociating, to the point where, for a large portion of the day, whenever I stood up I was completely unconvinced that my legs were mine, that I was the one controlling them, or that I was fully inhabiting my own body. The best way to describe is that I feel blurry at the edges; my lines are not defined, and I’m afraid the ink may start to leak out into the background.

I know that some of this comes from the fact that Brexit is something I do not want but am powerless to stop. It’s like I’ve been tied to a runaway train going in exactly the opposite direction to where I want to go.

But it’s more than that. As a country, we are hurtling forward into uncertainty and unknown, and, for someone who already exists at a high level of anxiety, this is very difficult for my brain to process. I can’t talk for every single autistic person on the planet. I can only speak for myself. And I am not coping with this aspect of the world. I am not coping well with this situation. I am struggling with a myriad of feelings and, as an autistic person, I am unable to filter them out in order to get through. The incessant chatter, the unending barage of opinions and emotions and uncertainty and horror, is swamping my brain. If I did not have support systems in place, I can’t begin to imagine where I would be. And I can’t even begin to try imagining where others are emotionally in the midst of this chaos.

I don’t have any advice; I can’t offer words of support, or strategies; because, to be honest, I don’t know how I am getting through each day. There should be cushioned areas for us – for people for whom this is overwhelming and debilitating – to fall into, but these are not even close to being adequately in place. I just want to reach out and hug everyone to me, to keep them safe – and, at the same time, I want those same people to put their arms around me and make me feel secure.

I have strong political opinions; I consider myself an activist, a campaigner, and I believe that through action the world can be changed. But this is not a political post. Political opinions don’t matter in the cloudy boundaries of this post. Not even mine.

I want people to recognise that our reactions to this situation are real and tangible, with physical and mental effects, and that we need to be supported wherever we sit on the political fence. There are people for whom this change and uncertainty is literally torture. We don’t need to be laughed at. We don’t need to be mocked. We need to be appreciated, and understood, and taken care of so that we can continue to function as best we can. Is this really too much to ask of this world?

At the end of the day, even if I am just screaming into an endless void, I needed to write this.

Otherwise, I think I would have exploded.