The Autistic Hive Mind (or the inconvenient lack thereof)

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There is a common saying, particularly favoured by neurotypical allies:

‘If you’ve met one Autistic person, then you’ve met one Autistic person’.

And whilst I appreciate the sentiment, I would like to offer one ever so slight addendum:

‘You have literally no idea.’

One of the problems of being a relatively (or obnoxiously) vocal Autistic person, either on the internet or out in the corporeal world, is that what you say can be taken as an embodiment of the Autistic experience. You become the definition of the community for some people. The life you have lived and the opinions you express are wrapped up and tied neatly together, with a quaint little ribbon and a label that says: To World, Happy Autistic Experience! Love Me. 

I hate to burst anyone’s bubbles, but I do not speak for the Autistic community. I don’t actually think any of us do. We may have joint experiences, and definite moments of oh my god me too, but there is distinct lack of anything even remotely resembling a overall consensus. We are a disparate, varied group of people, brought together under the umbrella that our neurology is not quite the same as the majority of people. Our brains are similar in their difference – but my goodness, are they very different brains.

 

Anyone who has been part of any community, particularly a marginalised one, will know that things are never simple. Just when you get to a point where you feel you can confidently say: ‘well, we think that…’, someone will come barging into your fragile certainty to tell you that no, they don’t think that, actually, and you need to stop speaking for other people.

This even extends to things that we think are set in stone among us. I’ve had the somewhat horrifying experience of an Autistic person telling me that vaccines cause Autism and we need to be doing something to stop it. Yes, you read that correctly. On the one hand, I had to remove myself incredulously to a corner with an ice-pack clutched to my head, mulling over the world that now seemed to be swimming upside down. But on the other, it reminded me that I can never truly claim to be toting the opinion of us all.

In many cases, like this, there is definitely a majority agreement. Particularly when, as here, the issue in question is less a differing opinion and more a viewpoint that actively harms people. But it never quite manages to spill over into ‘yes, this is a thing we all think’. Even on issues where I know I am absolutely definitely right thank you very much, I have started trying to use phrases like ‘many Autistic people’ or ‘a lot of Autistic people I have spoken with’ and, perhaps most usefully ‘I, as an Autistic person….’

I’ve seen it in the feminist community. I’ve seen it in the queer community (let’s not even get started on the complete lack of coherent truce over even calling it the ‘queer’ community). But the Autistic community is a whole other kettle of fabulous fish. Like with everything else, we take these common community conflicts of opinion and blast them to whole new plains of experience.

We can’t do things by halves.

It’s what makes ‘community’ so wonderful.

It’s also what makes it bloody terrifying. Particularly as someone who commits herself to words that will be on the internet forever (or at least until the various technologies gain sentience and take over).

On occasion I’ve peeked out from my little internet corner, been struck on the nose by various shrapnel from yet another intra-community battle over self-diagnosis, and immediately scurried back to my little trench. It can get nasty out there. And whilst there are some fights that on some days I will definitely roll my sleeves up for, there are more often that not days when all I want to do is conscientiously object and lock myself away on a secluded island paradise.

It’s definitely comforting – for us but mostly for allies – to think that there is consensus on all issues. Or that at least some issues have found their way to universal harmony. And whilst some issues are definitely up for less debate (if your opinion actively harms people, I reserve the right to give it approximately zero validity), it is the very nature of a community such as ours that there is conflict.

Maybe some would argue the word ‘community’ is wrong to describe us. But, through my (admittedly biased and definitely not representative of all people) eyes, this lack of a so-called ‘hive-mind’ is the very reason why we fit the definition of a community so well.

Because as well as fighting, and arguing, and quibbling, and bickering, and never managing to reach an agreement on anything, we also love, and support, and comfort, and validate, and hold up each others’ voices in a world that very often wants us to be quiet.

I have learned so much from listening to other Autistic people. I have felt so validated, so warmed by the knowledge that, even though my experience is definitely not universal, there is enough of a similarity to connect me to these other people from all over the world. I have an affinity with people in every single shape, size, creed, and identity. And I know that others have had similar adventures in this wide, wonderful Autistic world.

A divergence of opinion is to be expected with such variation in lived experience. This doesn’t excuse the lengths of vitriol that I have seen – please stop that or I’ll hide in my burrow – but the disagreement itself is all part and parcel of being a disparate and interesting community.

Are we a hive-mind?

No. We definitely are not a hive-mind.

But are we a community?

At our best, yes we are.

And at our worst…well, we probably are then too.

 

 

So long, farewell, auf wiedersehen, goodbye…

I start a new job tomorrow.

I am equal parts excited, terrified, and devastated.

I’m excited because this is the first step in pursuing campaigning as a sustainable career, and I’ll be working on campaigns involving one of my favourite things – dogs.

I’m terrified because this is something completely different; people I haven’t met before, a role I haven’t worked in before, a whole whirlwind of uncertainties.

And I’m devastated because taking this step has meant saying goodbye to the organisation I have worked for, and loved, for almost two years.

Even though it provided an opportunity to shamelessly include musical theatre lyrics in the title of this post, the goodbye was one of the hardest things I’ve ever had to do. Even though I knew that this was the right move for me, personally and professionally, making the decision to walk away was heartbreaking. I love the people that I have worked with, I have come out of myself, and discovered my true strength under the tutelage and support of a wonderful team. I am the person I am today – the person who was able to step out of my comfort zone and embark on this new adventure – because of my two years here.

Having barely slept for a few weeks, stepping into the office on my final day was emotionally exhausting. Every step I took was like a record of last times – the last time I turn the lights on in the morning, the last time I use my staff card, the last time I open the main gates, the last time I say ‘good morning!’ to each person – being etched into my memory. I could feel the tap tap tap of sharp chisel on rock as each moment slid by. It took every inch of my energy to keep my seams pulled together.

My team had decorated my desk. There were balloons behind the main reception, ‘good luck’ banners taped to the computers, and glittery star confetti scattered across every inch of surface. Stepping behind my ‘console’ as I called it (the main reception reminded me of the bridge of a space ship) was like stepping into a warm embrace.

As the day progressed, the love continued to pour, each signal of affection plucking at the seam of my composure. Sending the team my handover, a three piece document detailing every task and detail of the reception environment I had built, was the moment when my throat began to throb uncomfortably. I willed the phone not to ring, for fear that I would lose control in the face of whatever the outside world had to offer. Begging with the universe has never particularly been my forte – the calls kept coming and, somehow, I was able to maintain my professional veneer.

And then the traditional ‘cake and stare’ took place.

The floor was absolutely rammed, with people from all teams – people I greeted every day in my role, people I had worked with on various projects, people who had given me opportunities to talk about my autism in ways that could have a real impact on other people’s lives. As the space began to fill, so did my eyes.

I began to sob as my manager spoke. I sobbed as I delivered my speech, hiccuping my way through the words; that I was a different person now, that I had been changed for the better, that everyone was amazing and they needed to keep working because they were each making the world a better place in their own small way. It was so cliche, I might as well have broken into a teary rendition of ‘For Good’ from the musical Wicked. But it was all true.

The thing that really got me was the card. It was a massive card, covered in pictures of dogs and filled with messages from so many different people that my mind began to swim as I tried to read it.

You see, I’m not accustomed to being liked by large numbers of people. This just isn’t the way that my life has panned out. I am the one who would spend birthdays on my own because people wouldn’t remember them; I am the one who was always on the outskirts, watching from the corner; I am the one who was lucky to have the few friends I had, and had learned to live with the fact that most people really didn’t like me all that much.

So seeing all these people, these people who I admired so completely, coming together on my behalf, to say goodbye to me, to tell me how had affected them, sent me into a tailspin of emotion.

The rest of the evening was a blur of people and faces, old and new, of laughing and sadness and hellos and goodbyes. I hugged people I have never hugged before; I wanted to cry out with appreciation as they waited with no pressure for me to initiate the hugs, and it just made me want to hug them more. I talked with people I had never talked to deeply before, learning and revealing things that had never come out in the work environment. I felt surrounded by love and affection. I felt appreciated. By the very nature of my role ,as a first-point-of-contact customer service worker, I didn’t always feel that way. But I was wrong. I was appreciated. More than appreciated. People liked me. People didn’t want me to go. People cared.

It was sad. But I also felt amazing.

I felt deserving. I felt loved. I felt like a fudging superhero.

I still do.

As today continues, as tomorrow looms large and the butterflies continue their tap-dancing in my stomach, I keep casting glances at that card. I open it. I read it. I look at the presents I was given. At the things that are so indescribably me. At the things people spend time looking for, knowing me well enough to know what to get. I also look at the other cards. The ones from my front desk volunteers. The two cards that whole individual teams got for me. I let the messages wash over me, making me smile and laugh and weep in equal measure.

They make me feel that I’ll be okay. They make me feel like I am good at what I do. They make me feel that I am appreciated by people I admire. They make me feel that I can do anything I put my mind to.

Even as I embark on this brand new chapter, I haven’t fully closed the book on the old one. I am autistic. Autism will always be a part of me. Even if I am not working professionally within an autism-related role, I live autism with every breath, every blink, every thought. I will continue to write. I will continue to speak. I will continue to campaign. Those people I hugged goodbye on Friday night? They know full well they haven’t seen the last of me.

I’m just trying something new. Extending my arms to drink in everything I possibly can. Working to be the most rounded person I can conceivably be.

I will grow.

I will change.

And I will continue to do so in my own, fabulous, unique, queerly-autistic sort of way.

 

 

 

 

Leave my crazy pills alone! 


I take antidepressants.

Medication. Meds. Crazy pills.

I don’t know where I would be without them.

Actually, I do know where I would be without them. Because I’ve lived it. I spent years fighting against the suggestion that I should put these pills anywhere near my body. I held onto the lamppost kicking and screaming, gnashing my teeth so they couldn’t drag me into what I saw as an irreversible wormhole.

There are a myriad of reasons why it took so long for me to grudgingly take those little white nuggets in my hand. These things can rarely be boiled down to one single issue. I don’t like taking tablets because I’m scared they will stick in my throat? That was definitely a reason. The pills taste crappy? That’s another reason. I was a stubborn teenager who didn’t want to be told what to do? Yes, probably that as well.

But the main reason? The main reason was that the world around me told me I shouldn’t.

From all angles I had a symphony of voices telling me that these pills were bad. That I shouldn’t be taking them. That to take them was to give up. That taking them meant that I was weak. That they would play tricks with my mind. That they would make me someone I wasn’t. That they were evil, nasty, despicable things that were only taken by the worst kind of loser.

I was scared. And I didn’t want them anywhere near me.

I thought I was better than that. I was determined to prove that I was better than that.

This is a dangerous societal myth. And it needs to stop.

Last week, the BBC aired an edition of Panorama in which they investigated the possibility that antidepressants played a part in the crimes of The Batman Killer (James Holmes). Now, I am all for taking a good luck at different types of medication and exploring the myriad of side effects that can be found. That’s a fundamental part of safety when it comes to drugs. I’m also not a scientist. I don’t have a knowledge of these things at a chemical level. I understand that.

What I do not understand is the apparent obsession that various elements of the media have with proving that depression and anxiety medication is evil.

Stephen Buckley, from the mental health charity Mind, was quoted in the BBC article accompanying the programme:

“Millions of people take SSRIs and other antidepressants and many find them useful in managing their mental health problems. Side effects from medication can be serious but it’s important to recognise that severe side effects are incredibly rare.”

So why this seeming crusade against antidepressants in particular?

I call it a ‘fetishistic hard-on’. And I think that is a pretty accurate description. Because all medications have side-effects. The majority of these side-effects are rare, as in the case of James Holmes (potentially), even if they have gigantic ripple effects on the occasions they appear. We know that this is an unfortunate fact about the majority of medications – and yet the potential one-in-a-million side-effects of mental health medications seem to garner greater focus than any other.

No doubt this comes from the societal fear of any sort of medication that deals with the brain; unlike medication for any other organ, medication that touches on brain chemistry stirs the fire of anxiety. For some reason, as a society we don’t view the brain as just another organ that can get sick and be given medicine – we view it as something else, something more, maybe even the soul itself.

And woe betide the fate of anyone who dares tamper with that (for anything other than a life-threatening situation – brain operations to prevent imminent death seem to be something we give a little leeway to, even if it still makes us desperately uncomfortable).

And I understand that. I talk all the time about the exquisite way that my brain works; the quirks it gives me; the way that my neurodivergence is inherently tied into my whole existence as a person. I have rallied against ‘cures’ for my autism for this very reason.

But this just feels different in my gut. My depression, something that had been swirling in there ever since my childhood, was a chemical imbalance in my brain that was actively causing me harm. Not physical or visual harm, but harm nonetheless. I was ill, and I needed treatment. Treatment that I will probably have to take for the rest of my life.

The problem lies in the fact that the world is determined to prove that their squeamishness around mental health medication is correct. And they will grasp onto whatever they can find. It makes people feel ‘icky’, and they will inherently look for things that support their gut feeling. As a result, fervent investigations into the ‘bad’ side-effects of mental health medications are more likely to garner attention and, therefore, sell more papers or produce more website hits.  This then fuels the idea that, more so than any other medications, these particular pills are bad and scary.

It’s a self-perpetuating cycle. And which people get hit every time it comes around again, and again, and again?

People like me. People who desperately need this medicine to survive, but are so drowned in the culture of disapproval and fear that they will do anything possible to avoid the one thing that could make them better.

I suffered for years because of this societal fear of antidepressants. When I think of how my life could have been different had I entertained the concept of antidepressants earlier, I want to cry. When I finally crumbled at the age of twenty-one, it was a long and difficult process to crawl back into the light. It took several years, and some horrible experiences, before we found the right type of drug and the right dosage of that drug. If we had started the process at sixteen or seventeen, when I desperately needed it to start, we could have worked out all the creases in those more formative years rather than those first years of adulthood.

For a very long time, I felt that I had failed for succumbing to my need for medication for my mental health. People would ask when they found out: ‘when are you going to stop taking them?’. It was a race to get better and stop ‘needing’ them – only when I was off the medication could I proclaim that I was no longer a failure.

It took years to come to a point where I was at peace with my need for medication. It took an internal war before I realised that this may be something that I would need for the rest of my life – and that that was okay.

You would not classify a diabetic as a failure for having to take insulin for the rest of their lives. They have a disorder, a dissonance of chemicals in their bodies, that they can correct by putting this other chemical into their bodies. Well, I am the same. I have a disorder, a dissonance of chemicals in my body, and I can correct this by putting this other chemical into my body – the only difference is that the chemical imbalance is in my brain.

When we seek to assert the idea that antidepressants, and other medication aimed towards mental health, are inherently bad and dangerous, what we are doing is pushing people away from the very thing that may help them. When we place an imbalanced focus on the side effects of mental health medication over any other, we are creating a culture of fear and distrust that kills people.

As Ed Sykes from the Science Media Centre wrote in an article for MQ: Transforming Mental Health: 

“Imagine a pill, taken by millions of people every day, that unwittingly turns some of us into murderers. That was the scenario laid out in the recent Panorama on antidepressants, it was the message trailed in the media in advance of the show and it was the line used in the press release to drum up interest. That’s a very powerful and scary message, and when you’re talking about a drug that saves thousands of lives every year – and that already has a bad public image – then we need to be extra careful. Putting people off antidepressants costs lives.”

There it is. Putting people off antidepressants costs lives.

My crazy pills have done nothing to hurt you. All they have done is save me.

So leave them alone!

 

Let’s talk about ‘Quiet Zones’

I work in a city. Every day I am subject to at least an hour to an hour-and-a-half of crushing, crashing, banging commute. I do not live in said city, so I get to endure the fun of a train going into the city and then a lovely journey through the bowels of inner-city transport. No wonder I ensure I get to work at least thirty minutes early – if I didn’t have that window to catch my breath, eat some food and lose myself in crappy lighthearted YouTube clips, I would fall apart within thirty seconds of my shift starting.

And, throughout my almost two years of commuting in, doing a full day’s work, and then commuting back out again, nothing has rattled my gears quite like people being unbearably loud in the Quiet Zone. I feel as if there has long been a myth that the people wanting to use the Quiet Carriages are whiny, precious, stuck up little darlings; and, even if they are not seen as that, it is not seen as an absolute necessity in their lives. I don’t doubt that this describes a certain percentage of the people who adamantly argue for everyone to stop talking and turn off your phones. I myself have forgotten where I was, when on journeys with friends, and gaily engaged in flamboyant conversations before falling foul of the sshhhh brigade. And, in that moment, I resented them for their snappy tone and judgemental attitude.

It is only as I have started commuting, on a daily basis, with that commute bracketing a full day of often-quite-intense work, that I have come to appreciate just how important these areas are. And why, no matter how rude some of more puritannical enforcers can be, the ideals and rules of the zones should be respected.

It’s also important to bear in mind that the kinds of people who may benefit the most from these carriages – i.e. me and other autistic people who would rather not go into meltdown in rush hour on public transport thanks very much – are the people who are least likely to call you out for not abiding by the rules. I, certainly, have not confronted anyone making a racket in these environments. I have turned up my headphones to drown out the noise, drawn my cardigan tighter around me and huddled into a ball against the window, rocking back and forth to try and drown the noises out. I have closed my eyes and scrunched my hands into a fist to try and exert some of the frustration. But I have never confronted them.

I don’t know anyone, either on the spectrum or suffering from any of the multitudinous forms of anxiety, who would be able to stand and demand that the rules of the road be heeded. I am far more likely to either break down in public and garner the withering glances of my fellow, or keep it in until I reach my destination and explode all over the people I love the most. But I will not ask the person in the next row having a raucous old conversation about such-and-such (below the very very bright and clear sign) to stop. I just can’t bring myself to do it. The legs won’t walk that way, the head won’t turn that way, and the lips won’t move that way.

I wish I could. But it isn’t going to happen.

The fact of the matter is that Quiet Zones/Carriages (depending on which railway operator you use) are genuinely there for people who need them. The argument that some of them are mean to me when I talk too loudly is as ridiculous as the argument that we should cut all benefits and support for disabled people because a few people (usually non-disabled) are abusing the system. By making this comparison, I recognise that I am conceding to the fact that there will literally always be people who subscribe to this argument (have you seen the way this country treats people who need help?). But that doesn’t make the argument any less ridiculous.  And it doesn’t make it any less vile.

Yes, I know that JimBob down the road is claiming disability benefits even though he doesn’t actually have the gammy knee he says he does, but that does not mean that JimBob II who can’t work because of a longterm disability should have all his benefits cut and be left to starve/freeze. The argument makes no sense.

Likewise, just because some people are a little busybodying and hurt your feelings by telling you shut up in the Quiet Carriage, does not mean that you should be able to talk as loud as you like and consequently send the autistic woman next to you into a flailing meltdown.

I can guarantee you that the price of not being quiet in the Quiet Zone is a lot more annoying than the act of being quiet in the Quiet Zone. Unless you enjoy having the noises and the rocking and everything else that can come out if I’m pushed a little too far on a crowded train at the end of the busy day.

Quiet Zones/Carriages are not designed to be places of complete silence. You are allowed to carry on a conversation, as long as you do so quietly and with respect to the people around you in the carriage. Electronic devices should be set to vibrate rather ping (or, in my case, pi-KA-chu!). Don’t take calls (unless it’s an emergency – I mean, come on, we can understand that sometimes it’s unavoidable). There is no obligation to stop talking completely, throw your phone away, or to sew your mouth shut with one of those guns morticians use to keep the mouths of corpses shut.

The train company I use defines the Quiet Zones thusly:

 “If you’re looking to travel in peace and quiet look out for the carriages with the quiet zones stickers on them. One in four of our carriages are marked as a quiet zone and these politely ask customers to put their devices on silent, avoid phone calls, and keep conversations to a minimum so if you’re travelling in these carriages you can do so in peace and quiet.”

I mean, come on guys, gals and non-binary pals. That isn’t too hard. Just a few little tweaks to how you behave, and you could be absolutely saving the final few hours of my day. It’s not even in every carriage. 

I don’t want to go home and spend those precious hours with my family in a state of overloaded hysteria. I’ve worked hard, I’ve done well, I deserve to be able to enjoy those few moments when I can just sit down and be a part of that collective. I don’t want to be an interfering busybody lecturing on the rules of the train carriage, but I’d rather be that than the meltdown monster I become when it all gets too much. 

And it does get too much. The city is a hard place to be autistic. It’s why I don’t move there, as much as I love it. The smooth forty minutes between my final tube stop and my final mainline stop is the time I have to myself. To calm down. To process. And sometimes I need a Quiet Zone to do that. 

I want people to know that if you are in the Quiet Zone/Carriage, and you make an effort to keep the noise down, you are saving me from a potentially horrible evening. You’re allowing me time to come down, so that I can be a semi-functioning human being when I get home and see my family. And I am grateful for that. By making a few adjustments if you find yourself in that carriage, you are making the difference between people falling apart in the overload and people being able to process it (life, the universe, everything) properly. Isn’t that worth it? 

You may have noticed that I am having some emotions. It has been a difficult old week. And the incessant beeping of phones and shrieks of laughter – in the place they should not be – had me almost falling to pieces in my seat. So yes – this topic has stirred within me an emotion (or several). 

I feel like I should insert a deep, calming intake of breath at this point. And hug my dog. A lot. 

Basically, the crux of the matter, the message of this whole ridiculous waffle, can be condensed into a single plea to the world:

‘But what if they’re dead?’ – catastrophisation and the anxiety of loss

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Sometimes, when I wake up at night and my dogs are lying around me, I have to reach out and check they’re still breathing. I gently lay a hand on their warm soft abdomen’s, hoping against hope that I will feel it rise beneath my fingertips. Just to quell the spark of panic, and the paranoia that one day I am going to have to say goodbye to them. And I have to reassure myself that I haven’t lost them just yet. They’re still here. They haven’t left me today.

They’re so perfect, and I can’t stop myself from fearing that they will fall through my fingertips at any moment. Because I don’t deserve them. They deserve better than me.

This is an anxiety of mine that extends far beyond just my dogs. I have reoccurring dreams about losing those close to me. I wake up sweating and crying, with memories of screaming and kicking and clawing at coffins containing family members and friends. Every time my phone rings and it’s someone I am not expecting to call, I freeze with my thumb hovering over the buttons – if I accept the call and it’s bad news, it’s almost like I’ve made the bad thing happen.

If my mum is just a few minutes late picking me up from the station, or a friend isn’t at the meeting point at the time we agreed, I will have images of mangled cars, bloodied windshields, crashed planes, and the twisted metal of a folded train.

Ever since I was called upstairs almost four years ago; ever since I responded to their shout with a frustrated huff and stomped up the stairs, only to find my family curled together in a grief-stricken bundle on the bed; ever since that day when we lost my Nanny, and my world collapsed inwards, the sound of someone calling me into their room fills me with terror. I’ll creep into the doorway with a look of terror in my face, shuffling my feet and rubbing my hands together furiously.

My parents tell me I need to stop assuming the worst when someone calls me to them, rings me when I’m not expecting, or doesn’t arrive exactly on time – but I don’t know how. My mind shoots aggressively to the grimmest outcome. I can’t stop it. Even when I’m aware of what my mind is doing, nothing I do will bring it back. My friends are dead. My family is dead. My dogs are dead. Everyone is dead and I am alone, and I can’t cope with that, I can’t be alone, I can’t, I can’t.

When I was going through cognitive behavioural therapy in my early twenties, they used the word ‘catastrophising’. This is a label that I have found stuck to myself over the years, especially when it comes to the fear of losing people I love.

If you show me a situation, I will show you the potential catastrophe.

When some people think ‘catastrophising’, they think of that infamous and actually-bloody-dismissive-and-awful phrase ‘making a mountain out of a molehill’. This is so deeply inaccurate that it should be covered with police caution tape to keep people away. Catastrophising is not looking at a molehill and seeing a much bigger molehill (i.e. a mountain). Catastrophising is looking at a molehill, and being blasted with the mental image of someone I love getting their foot stuck in it, falling to the ground, and breaking their neck. I’m not looking at the small problem and seeing it as something bigger than it is; I’m looking at the issue and envisioning the worst possible outcome.

Could my friend, my mum, my brother get their foot stuck, fall and injure themselves fatally? It’s unlikely, but ultimately it’s possible.

I’m not imagining dragons, and ghosts, and witches, and other things that are definitely not going to happen. I’m imagining things that could happen.  However small the possibility of that thing happening, it’s still a possibility. And that’s what makes catastrophising so much more terrifying and scary than simple overreaction. That’s what makes it so hard to shake.

I’m so scared of losing people. I’m so scared I want grip them tightly, locking my arms around them so they can’t go, they can’t get hurt, they can’t leave me.

I’m not as scared of my own death. There’s still something terrifying about the big bad empty beyond, but it’s not like I will be conscious to know any different. What I’m scared of is the certainty of losing people – that one day I will have to bury my mum, bury my dogs, I know this, and it’s the knowing that hurts beyond reason.

When I think of losing my mum, I want to throw a tantrum and demand it never happen. I want to sit in a corner and rock gently. I want to say ‘no’ and ‘I won’t survive’ and ‘take me as well’. This is one of my biggest fears. My mum is my rock. She is my everything. The thought of losing her – even if it’s thirty, forty years away – is like a knife in my stomach. It could be years away, but it’s still going to happen. And when it does happen, it will still be too soon. And all I can think is I can’t, I can’t, I can’t.

Please. 

I’m terrified of the people I love dying because I don’t know how I will continue to live afterwards. I can’t see beyond that. And it’s something that I am going to have to work on – it’s something that I am going to have to keep on and keep on and keep on working on. Because it is going to happen. And as I get older, this type of thing is going to be a more prevalent reality.

I don’t want to live my life in fear of the people around me dying. I want to be able to enjoy them whilst there here.

So, when I’ve finished typing this, I’m going to climb down from my bed and give my dogs the biggest, squishiest, sloppiest hugs they’ve ever had. I’m going to tell them how much I love them and love them and love them. I’m going to spend more time with my family members. I’m going to arrange to do more with my friends. I’m going to make sure we laugh and cry and hug and make all of the memories we possibly can.

And I’m going to try and not be so afraid of losing them that I forget to make the most of the time we actually have.

 

 

 

“I won’t be ignored!” – Thank You, Chester Bennington

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Chester Bennington died yesterday.

As a child of the new millennium – I was two weeks shy of my eighth birthday when the clock struck midnight – it is almost overwhelming for me to imagine a world growing up without Linkin Park’s music. Particularly without Chester’s voice – that controlled snarl, at once wild yet tamed, that voice that defined the rage of a whole generation, that spoke out to lonely, angry, confused young people like me and said ‘it’s okay to be mad – I am too’.

I have talked about my teenage years being lonely and confusing, fuelled by an ever-growing sense of difference and insecurity, but I have yet to talk about just how angry I was. And I was so angry. The world didn’t make any sense to me, and everyone around me seemed to be just accepting it. That made me furious. I wanted to grab every smiling face by the ears and scream why the hell aren’t you as angry as I am?

I was angry at every unfairness I saw, every injustice, every deviation away from a perfect balance. I was angry about the cultural rules I was supposed to know, and angry at the judgement and ridicule when I forgot to follow. I was angry that these rules existed, because who the hell even consulted on this before smashing it into my face? I was angry at myself for not being able to conform, for being different, for being a weirdo, for not being able to be like everyone else. I was angry because I wasn’t coping. I was angry because the person next me was breathing to loudly. I was angry, angry, angry.

We like to laugh the rage of teenagers away, flick it off with movement of the hand and adoption of the words ‘teenage angst’;  relegating it to something that is petty, childish and completely unwaranted. But they are wrong.

The anger of young people is real anger. The pain of young people is real pain. The outpouring of emotion is real and scorching, particularly in the modern day – everything is fast and furious and scathing and target-driven and terrifying, a pressure cooker that threatens to overflow at any moment. Young people – children, really, although I didn’t see myself as that at the time – have legitimate reasons to feel the emotions they do. The world pours scorn upon them and their experiences. They are pushed to reach target after target, defining their lives to fit into socially acceptable little boxes before the brain has even developed enough to explore the amazing facets of who they are. No achievement is ever enough. It’s like being trapped in a cage, and growing up is like learning to accept that cage. It’s terrifying. It’s agonising.

Linkin Park got that. Chester got that.

When Chester sang, he poured every inch of pain and rage into the words; you could feel it in your gut. I remember, in moments of anger, frustration and upset, plugging in the latest Linkin Park album and letting it rumble so loudly that everything else was blocked out. It was like being immersed in it; it allowed me to connect to my emotions, to feel every last exposed nerve, and to embrace the sense that someone understood.

Here was someone who didn’t understand the world. Here was someone who was hurting deeply. Here was someone who wanted to rage and scream. Here was someone who wasn’t ashamed to rage and scream. And he did it so beautifully.

‘Numb’ was an autobiographical version of my life, of the painful depressing numbness that grew as I became more aware of the world and how little I connected with it. ‘Crawling’ was the anthem of my uncomfortable relationship to the world, that feeling of pin pricks in my skin as everything was too loud, too bright, too nonsensical, too awful. ‘One Step Closer’ was the point at which it became too much, which I wanted to scream and clutch my hair and beat the walls to make everything go away. And then the gentler tones of ‘In Pieces’ and ‘Shadow of the Day’, sad and mournful, full of pain and tenderness, allowing me to lay in bed and finally lose myself in tears.

I was not the most ardent fan. I never saw them live. I did not know every aspect of their lives, every note of their music. I liked many their most played singles rather than knowing the more obscure ones. They were not the focal point of my life. But they were the background soundscape that supported me for years. And that meant everything.

Their music was there when I needed it the most. It gave me an outlet. It allowed me to kick and scream without causing myself or anyone else any major damage. Even as I grew older, reaching university age, and some of my acquaintances were going through their ’embarrassed-by-everything-I-liked-as-a-teenager’ stage, I kept on listening. Their music grew up with me. As my anger evolved from my personal rage to fury at the societal systems around me, particularly in my activist work at university, so, it seemed, did theirs – while some mocked A Thousand Suns for it’s much more experimental and electronic tone, I adored it for it’s message of rising up and rebelling against a broken system.

The song ‘Wretches and Kings’ included an excerpt from a speech by activist Mario Savio:

 “There’s a time when the operation of the machine becomes so odious, makes you so sick at heart, that you can’t take part; you can’t even passively take part, and you’ve got to put your bodies upon the gears and upon the wheels, upon the levers, upon all the apparatus, and you’ve got to make it stop.”

That, followed by Chester’s screaming assertion that we were ‘coming’ for the ‘wretches and kings’ of the world, became my mantra and my guiding beacon of discontent.

I cherish that album. When I’m feeling filled to the brim with hot rage-magma, those are the songs I turn to. They are not just a release of my anger, but a directional force to keep me fighting to change what I see as wrong.

My heart is broken.

Everything hurts. I have struggled to focus, struggled to take it in, struggled to understand and comprehend and even begin to process any sort of emotion. My mums tried to speak to me about it last night, but I answered with a snapped ‘I know’ and went back to my sulky silence. I had no words, and I didn’t want anyone else’s. I didn’t know how to respond. I still don’t.

The voice that gave so much had gone. That voice that defined a generation filled with uncertainty, and pain, and anger, wouldn’t sing any more. We knew, from his interviews, that he had experienced struggle and pain. He had experienced horrors as a child that I don’t even want to go into, and he had fought against the dark that had consumed his life for so long. And, right now, it feels like the darkness has won. And I hate it.

When something like this happens, we as a society like to put out a strong narrative of: ‘if you are feeling suicidal, please know you can reach out to me for help’. This narrative, whilst well-meaning, is not constructive. When you are in that state, lost in that mindset, the ability to reach out for help is as far away from your grasp as the moon. Instead, others need to reach out to you. Speak to friends, to family. Make sure they are okay. Keep an eye on them. Offer help, and then, when they don’t respond, offer it again. Keep your eyes open. Do not assume that things are okay. Watch for the signs. Reach, reach, and keep on reaching. Don’t stop.

I just hope that Chester knew how much he gave to us. How much he spoke for us as a generation. How many dark days were endurable because of those words raged forth from those glorious vocal cords.

And I just wish I could tell him how he took an angry, lonely, confused little queer autistic girl, and gave her the tools she needed to survive.

Thank you, Chester.

I can’t feel the way I did before
Don’t turn your back on me
I won’t be ignored
Time won’t heal this damage anymore
Don’t turn your back on me
I won’t be ignored
~
‘Faint’ – Linkin Park

 

The Curious Case of The 13th Doctor 

Well, this is an interesting old hullabaloo.

For anyone who has been lucky enough to avoid social media over the last week, the identity of the 13th Doctor (of Doctor Who fame) has finally been revealed. This is always a time of great strife within the popular culture community. Conflict of opinion, sometimes violent disagreement, floods the internet to saturation point.

I was pretty laid back about the whole business. After a run of regenerations covering over fifty years, the powers that be were yet to cast anyone other than a cisgender white man. They sometimes played around with the ages, and obviously they each had their separate characters, but I was pretty meh about everything. I was completely convinced I knew what to expect.

What an agreeable shock to be proved wrong.

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I cried.

Well, first I squealed. And flapped my hands. A lot

But then I cried. 

I cried because for such a long time I had been falling out love with this show. It had been a long, slow, agonising process. I could feel my heart gradually losing it’s grip on this show that had once been so wonderfully bright in my life – and as it lost it’s grip, it began to crack as well. And now heart began to swell. I had never allowed myself to believe that they would do such a thing. I had never allowed myself to hope. I cried because my heart swelled again.

I cried because I knew how important this was going to be to all those geeky little girls out there. Make no mistake, the companions have been glorious; I have loved them and rooted for them and held them as a positive influence in my then-teenage life. But the Doctor is different. All those little nerds, those little Aspergirls like me, banished to the corner of the classroom to read a book at lunchbreak because no one was going to play with them; to see a reflection of yourself in such a strange, wonderful, alien, heroic and eccentric character, would have meant the world to me at that age.

I know not everyone is happy. I know that. I’m not going to fart all over anyone else’s opinions, because everyone has their own feelings and their own attachment to this character (of course they do – it’s been a part of people’s childhoods for over fifty years!). But I do ask people to stand back and consider the impact – the positive impact – this will have going forward. I ask for adults to step aside and think of the video of the little girl screaming with delight because the new Doctor is a girl!!!!!!

Yes this is our show. But it is also their show.

The little girls of the future who will grow up thinking that they can be nerdy and twitchy, that they can waffle non stop on one topic for hours, that they can be hyperactive, socially inappropriate and unable to comprehend silly Earth rituals and…at the end of all that…they can still be the hero.

I know that people have been pointing out all the absolutely amazing female characters we have had in other shows, but this is The Doctor. This is a pop culture icon. This is a character people have followed for fifty years. This is a show that has endured. This is a character that everyone knows. This is as big as you can get.

This is amazing.

As a nervously awkward little girl, who became a nervously awkward teenage girl, who then became a nervously awkward woman, this is so heartrendingly important to me.

We can see the image that is being drawn for us here: the 13th Doctor presents as a woman. As a woman, this resonates with me. Other than that, there is much to be seen on the further ripples this could create. It’s a difficult one to discuss from the limited angles I have to see it from – after all, I’m a cisgender woman. I cannot speak for all the wonderful trans, including non-binary and gender-fluid, people that I have come across in my adventures down the rabbit hole of queerness.

Gender is a funny old thing. It’s varied and wide-ranging, differing in understanding from culture to culture, from country to country, and even sometimes from family to family. I am endlessly excited for how they are going to tackle this big old box of pre-conceptions, of conservatism vs progressivism, of stereotypes and broken binaries. I am crossing my fingers that they do it right. I am crossing my fingers that we get a conversation about pronouns. I am hoping against hope that they do their research, and are willing to play with the concept of gender fluidity that they have opened the lid on.

Will this Doctor evidently be treated differently on Earth in this presentation? Will people be less likely to listen because they no longer present as male? Do they even actively identify as a woman? Is this something that even crosses their mind? Do they take a more neutral approach to gender? Do they reject the binary as a silly Earth custom that even large parts of the Earth itself scoffed at before the encroach of Western-European colonialism? Will we get a discussion about pronouns? Will we finally have a discussion about whether or why the sex binary is reflected in species a billion light years away when all the science says ‘nope’? 

This why I’m excited. And scared. 

Gender is a topic that comes up so frequently in my conversations in Autistic circles. Many of us question the strict binary culture tries to impose on us – but why, we ask, I dont understand this, its nonsense. A large number of trans people I know are Autistic. Maybe we are more open to ideas outside of what is ‘acceptable’ in society, simply by virtue of not seeing or understanding societal rules in the first place. 

As I said, I am cis. I am not trans. I am parroting a lot of what has already been said by the people on the ground. This is an area that has been beautifully discussed by trans people on the spectrum, and I urge you to seek it out. I just cross my fingers that this area of Doctor Who will be explored with the respect and intricacy it deserves.

I am also not going to talk about the disgusting comments about Jodie Whittaker, our fabulous new Doctor, and her various anatomical parts. Because that is a level of grossly inappropriate intrusion and casual cissexism (that parts = gender) that I am automatically consigning to the block button. 

Blech. That is all I have to say on that matter. Blech, blech, and also blech.

There are some excellent critiques of this casting in terms of ‘progression’ for women, particularly in sci-fi representation, only being extended to white (cis, abled) women, and the continuing failure of intersectionality in these ‘successes’ for women. These are by far the most compelling criticisms of the whole business. Again, I urge you to seek out the voices that are more knowledgeable than myself. I may add some links at a later date. 

In the meantime, I want everyone to sit back, take a breath, and for one moment imagine the importance of this to every little girl watching. Set aside your feelings, and allow the magnitude of this decision to come to the fore. I don’t care if it’s ‘pandering’ or ‘political correctness’ – I care about the young girls I know are living the existence I lived. I speak for my own experience, as the eccentric and alien little Autistic girl that I was, and what seeing this 13th Doctor would have done to my lonely and self-hating young mind. 

That is my ‘proof’. My life. 

I know that for every person boycotting the show, there are ten little versions of me screaming and flapping with pure, unadulterated delight.

And that right there? That’s the only damned thing I care about.
 

Owning my fatness…fabulously

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I’m fat.

This isn’t a statement that is up for debate; it is not a plea for attention, an invitation for people to flock to me with fawning words: oh no, you aren’t fat, you’re beautiful.

I mean, I am beautiful. I’m also fat.

Not the kind of fat you hear people talking about when they swoon over ‘curves’; it’s not nicely dispersed in all the places people like. It bulges out in odd spots, swallows my ankles, gathers around my knees and protrudes over my trousers. The skin around the tops of my arms wobbles with every word I type, and the blubber of my thighs ripples as I stim my feet. Everything jiggles. Like I’m made of jelly.

My relationship with my body is ever-evolving and difficult. Sometimes first instinct within me is to look at my body in the mirror and scream. I want to pinch every last roll, push it in, suck in my ribs so that every piece of clothing falls flat against me rather than ballooning outwards.

This isn’t new. Even when I was at my skinniest, my stomach was never flat, my arms were never taut, and my legs were never trim. But they weren’t quite this wibbly-wobbly.

Those months of skinniness signified a period of deep physical and mental disharmony  – the weight fell off me because, at university, I was so scared to leave my room that I often failed to eat anything but the odd cookie or sweet. The kitchen was the focal point of university house-share socialisation, and my feet would not take me there. Even when I could bring myself to go, I was like a frightened woodland creature, scurrying into the fridge to grab the easiest thing and then darting back to the safety of my burrow.

But still, I was skinny. That felt so important at the time. I would look back on pictures of my university self and covet those arms and legs. Never mind the bulging pain in my heart and in my head; the stomach wasn’t bulging quite so prominently as it was in the present.

It is not lost on me that, in the past four years since graduation, my size and my weight has been rising. As clothes that once fit comfortable grow tight on my flesh, and as the numbered labels on the outfits in shops get higher, it is hard to ignore that something is changing.

I’ve sat in shop changing rooms weeping as yet another piece of clothing in the size I definitely was a few months before fails to even go on my body. I’ve gone into meltdowns behind those curtains, often as my mum tried to calm me, only to get frustrated herself as I refused to try on anything but the size that I knew was supposed to fit. I’ve even gone so far as to instruct the doctor, who was weighing me as part of the regular check-up for my medication, not to tell me what the scales said, fixing my eyes on the ceiling until I was told I could step down from the dreaded instrument of self-confidence destruction.

It has taken me a long time to get to the point where I mostly accept and celebrate my body. We don’t live in a culture that makes that sort of thing particularly easy. As someone who has always struggled with understanding cultural norms, and has therefore felt confined and trapped in a baffling circle, this was just one other thing that I felt cut me off from the rest of the world. I wasn’t skinny, or trim, or fit, and I was supposed to be. Just like I was supposed to be able to understand non-verbal implications and social etiquette, so I was supposed to have a better shape than this – why couldn’t I just be something that didn’t set me apart on this little island of self loathing?

It doesn’t help that well-meaning friends and acquaintances on social media are involved in weight-loss businesses. I see post after post of people celebrating weight loss, lauding participants as ‘success stories’ and ‘courageous’ people, with no mention of anything but the difference in the jeans they wore then and the jeans they wore now. It makes me want to curl into a ball and hate myself forever. It does not inspire me. It makes me question my worth, and panic about the measuring tools of my successes.

You too can achieve your goals!

But what if my goals have nothing to do with how much fat I carry?

Am I not courageous? Have I not succeeded?

When you are told that you are insignificant, inferior, not ‘cool’ enough, unimportant, undeserving of representation; that you should hide, shrink, cover up, walk with your head down, and not take up space…to do the opposite of that is a radical and paradigm-changing action. Just do you.
– Jes Baker, fat acceptance and body positive activist

My weight is not a signifier of my worth or my success. I see a picture of someone who has lost weight, and I want to know the other things they have achieved. I have no issues with people losing weight, with people being proud of themselves for losing weight – if it is the right thing for you, then I applaud that. But it is not a failure to be a big person. It is not a failure to be wibbly and wobbly and not particularly fussed to do anything about it.

In fact, if anything, my weight gain is an indicator of my success and courage. I have three meals a day. I remember to eat. I will open the door of my workplace kitchen with no hesitation. My lack of weight was a symptom of just how much I was struggling – how low I was, how much I hated myself, and how much I was unable to function in any way at all. I somehow dragged myself up that endless jagged wall.  I did that. I am happy. Every bulgy bit of me is an example of how far I have come.

I will only allow myself to be proud of that.

I’m not looking to lose weight. I am not looking to restrict my diet, or to take up a strenuous exercise regime to ‘fix’ this thing that isn’t a problem. At the moment, I am focused on the direction of my life and my career. I have no spoons left at the end of the day. In order to maintain a good level of self-care, I have to give myself wind down time between getting home (please note, I have an hour to an hour-and-a-half commute at the beginning and end of each day) and going to bed. I know my limits, and I know what I need to do to keep my head above water.

Maybe one day I will do these things. Maybe one day I’ll want to. That seems like a damned good reason to do it. Because I want to. Not to follow someone else’s ideas of what success and courage should look like.

I measure my success on my own terms. Whether it be weight, autism, or anything else.

In fact, the process of accepting my fatness has gone hand in hand with the process of accepting my autism. This thing that brought me so much shame; this thing that painted a target on my back. This thing about myself that I tried to so desperately to mask and change. This thing that kept me awake at night with thoughts of why was I made this way? 

The process of acceptance brought with it a greater knowledge of myself. I began to connect with myself and the different facets of my identity. And from a more intimate understanding came love.

Love of my autism. Love of my fatness.

And love of my wibbly-wobbly perfectly-imperfect self.

 


 

 

’15 Body Positive Quotes From Awesome Activist The Militant Baker’ on Bustle

‘7 Fat Positive Activists Who’ll Make Your 2017 More Bearable’ on Bustle

Dear Mrs O – a letter to my teachers

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Dear Mrs O,

This isn’t just for you. But when I think of my final years in primary school, it is you who comes to mind off the bat. You were my teacher after all. I trust you will share this with the others, as they need to see this as well. You were not the only one. Not by a long way.

I hope you know what this about. Usually, I am an optimistic person; I see the good before the bad, and give people the benefit of the doubt where perhaps they haven’t earned it. That doesn’t apply here. I don’t think you know what this is about at all. So, let me tell you.

It was hell.

Every day, those last few weeks of Year 6, as we wound down from the SATs, no classes or structure, I wanted to vomit as I approached the school gates. My heart would clench, my head would pound, my brain would itch for me to run back and proclaim:  I can’t, I’m sick, I’m sick in my head and I’m sick in my heart and I just just can’t.

I was eleven years old. And it wasn’t fair.

It wasn’t fair that for years I had been the target of bullies, of people who would be my friend one moment and next moment, as punishment for some crime that I didn’t know I had committed (but that I believed I had committed nonetheless), would have the whole class sniggering behind my back.

It wasn’t fair that I kept it inside myself for those years, never really talking about the true extent of it, because I genuinely believed that these people were my friends and, if they weren’t my friends for a period of time, it was because I had done something to deserve it.

It wasn’t fair that the few times I burst into tears in class and was forced to reveal what was going on, it was chalked up by you – not just you, but all of you – as ‘girls being girls’, ‘silly tiffs’ and something that didn’t warrant immediate action.

I remember how my mum raised it as an issue in my parents evening, and how your face (as she tells it) transformed into a mixture of shock and amusement as you declared but I thought she liked being called a ‘boff’. 

Boff. That word. That word that defined my childhood. Boffin. Nerd. Geek.

Because I was clever. And I wasn’t just clever, I was intricate. Obsessive. I knew things, and I wanted to know other things. I was hungry to fill my brain with everything.

I got the grades you wanted me to get, so nothing else mattered. On paper – maths, english, science, history – I was fine, and therefore the fine-ness of my emotions didn’t matter. I began to feel as though this was a normal way to live. I was a child. I had no idea that it could be like anything else.

I was also a daydreamer. I remember, when I was six or seven, running my fingers along the wall, seeking out the bumps and hooks and cracks and lumps, desperate for the sensory input it would give me. I remember being so absorbed in it that my finger hooked in a measuring cup in a tray, and brought the whole tray crashing down. I remember being shouted at. Being glared at as I was made to pick each item up and put them back.I remember the shame. I remember not being able to answer why I had done it, but not understanding why I shouldn’t have been doing it:

I just wanted to feel the wall. My finger slipped. But I just wanted to feel the wall.

I remember having grandiose ideas, and not understanding why I couldn’t pursue them. Why couldn’t I build a crank to pull along my toilet roll tube boat, rather than using wind or simply string like everyone else? Why couldn’t I rewrite the story of A Midsummer Night’s Dream as a rhyming couplet poem told from the perspective of a squirrel watching things unfold from the treetops? Why couldn’t I read this amazing book of you were teaching something I already knew?

One scene in particular stands out. I approached you with some work – a map of Ancient Greece, or something – that I felt was finished. You glanced at it. Told me to go next door to the other classroom, and to ask that teacher whether they thought it was ‘acceptable’. I complied. I didn’t understand that this was a punishment. I just did what I was told. It only dawned on me when that other teacher looked at the paper derisively and made it abundantly, loudly clear that this was not acceptable. This was a show. A show to shame me for not doing it right. I hadn’t realised. I hadn’t understood. I wasn’t prepared.

I remember, in the Year 6 farewell performance on the last day of school, wearing a sign around my neck saying ‘BOOKWORM’; a joke made to all the parents about me being too busy reading ‘War and Peace’ to have taken part in the first segment. I remember that. It sticks with me. That was your idea. That was my ‘quirk’. I was a nerd. I read my books. It was funny. Hilarious. Let’s use it in the script. The audience howled. And my heart still aches.

I don’t hold grudges against them. The bullies. They were kids. Many of them have grown to have kind, productive lives. Sometimes, the fury rises within me, when I see a comment or an achievement on social media, but it is momentary.

You, and your ilk? I fume. You were adults. You were supposed to protect me. My mum dropped me off into your care every day, expecting that I would be watered and fed and encouraged to bloom – and every day, I came back wilting a little more, dropping another petal of the slightly-odd-but-happy-and-flappy child I had been before all of this.

For a long time, I let that bitterness consume me. I couldn’t move on from it. I still haven’t fully. It held me back. It doesn’t have the same grip any more, but there are moments – triggers and words and sounds and smells and looks – when I’m right back there, grovelling for my friends to talk to me again, convinced that it was my fault, smiling pleasantly as people called me names in front of you and you did nothing by laugh along.

I remember, three years after I left, coming back in with a jovial smile to see how everyone in my old haunt was doing. I remember talking to you. I remember your words, said with the tone of pinching the cheek of an adorable yet not-to-be-taken-seriously child.

Oh, I remember you at breaktime, sitting there, reading your books.

A laugh. How quaint. How quirky. How socially awkward of me. What fun we had.

I remember bristling. I remember words flooding from my mouth that hadn’t dared be spoken before.

It was because no one would play with me. 

And then your response; the words that crept up and stuck with a fury that wouldn’t leave me for years.

Oh no, you were just a very anti-social child.

That still stings.

Now I look back, and I realise the ignorance of you. The ignorance of you all. My social problems were my fault. I didn’t make enough effort to have friends. If only I’d been like everyone else, everything would have been fine. I was not a troubled child, because I was a clever child. I didn’t have problems, as long as I solved the problems on the exam paper in front of me. I read books at breaktime because I was a boffin, not because the thought of going outside with the other children was terrifying. You had no frame of reference for me. Who I was. What I needed.

Let me tell you now.

I am autistic. I was an autistic child. I did not fit into your stereotype. But I needed support. I did nothing wrong. I did not deserve what I got. I needed you to understand. You should have done that. You failed me. You all failed me.

I wonder how many other children slipped through your fingertips, and their fingertips, and the million fingertips of a million teachers and tutors and doctors and counsellors and friends and family who didn’t care to look at it any other way.

And now all I can do is channel that rage, that disappointment, that sense of loss when I look back – what life could I have had if things had been different? – to try and make sure we don’t lose any more. To make sure there are no more little copies of myself, waiting and enduring and accepting what they don’t deserve.

You, all of you, were supposed to be teaching me.

It’s taken me fifteen years to realise that you, not me, were the ones that needed to learn.

Holy Oxymoron, Batman!

I had a good day yesterday.

I also had a meltdown in public yesterday.

Holy oxymoron, Batman!

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you had a what and a what now?????

On Sunday, it was the charity gala screening of Cars 3 at the Vue Cinema in Westfield. The event was aimed at families that are supported by disability charities, and as a staff member of and someone who is supported by such a charity (as well as an utterly unstoppable Disney superfan), I had tickets for me and my mum.

I adore these events, as you may have seen in my previous post about the autism-friendly performance of The Lion King. I love the freedom of being able to be myself – to be able to be autistic with no hint of judgement from anyone else in attendance. But I was also nervous. I was nervous because it was a big event. But I also had a niggling anxiety that I couldn’t quite put my finger on. It felt like something was going to go wrong.

The journey was fine. I was ready on time; we were early for the train; I didn’t forget my tickets; even my make up went on fine, despite being in a moving train. We arrived at the location, and we had time to pop into the nearest Starbucks for a croissant and a hot chocolate. When we got down to the cinema, however, there was an eerie lack of other human beings. The little anxiety-worm that had been wiggling in my stomach began to thrash.

‘Something’s wrong,” I kept saying to my mum, my voice getting higher and more and more hysterical. “Something’s wrong, something’s wrong, something’s wrong…”

After meandering around for a bit, double- and triple-checking the tickets, I asked my mum if we could find a toilet. She was also anxious, I could tell, but she was trying to put a smiley spin on it to stop me from completely boiling over. Once locked in the cubicle, I fumbled with my phone to check through the lengthy email I had been sent about the event.

My stomach dropped.

She could see it on my face when I emerged.

The floodgates opened and I began to cry. I could feel my face growing hot, even hotter than it already was in this heat, and my eyes filled with tears. My phone, email still glowing on the screen, was still in my hand; I began smacking it against the side of my head, until my mum caught my arm to stop me. I felt so stupid. I didn’t know what to do. It was now 9.50, and the ‘fun in the foyer’ part of the event had started at 9.45.

How was I to know that there was another Vue Cinema, at another shopping centre called Westfield, on the other side of London?

Not all meltdowns are created equal. And this one had sprouted out of self-hatred and panic. This creates a lovely concoction of crying, muttering, shaking, rocking and, the pièce de résistance of this particular meltdown combination, hitting myself in the head, arms and legs.

The journey across the city was horrible. My mum, who was now absolutely panicked, was struggling (understandably) to manage her own anxiety alongside the meltdown of her 25 year old daughter. I could feel her getting frustrated, and that fuelled my downward spiral. Everything was going wrong and it was my fault. I still had an almost full hot chocolate in my hand, which spilled all over my fingers as I tried to jog to keep up with my mum’s pace.

Once we were on the train to take us to the venue, we could relax. Well, try to. The train was full and scorching; I could feel sweat running down my nose and pooling at the corner of my mouth. I was still shaking and crying, gripping on to the nearest handrail and muttering ‘I ruined it I’m sorry I ruined it I’m sorry I’m so stupid so stupid so stupid so-‘.

My mum, having had the chance to calm down and seeing that we were going to be at the venue well before the actual film itself started, clicked into action. She stood in front of me, blocking the other people on the train from getting too close to me. This also stopped them from staring, protecting me on two separate levels. But she also kept her space, waiting for me to initiate any contact. I felt awful. I had wanted this to be a good day, an amazing day for me and my mum, and I felt like I had thrown it all away by not properly reading the damned email. She reassured me that we weren’t going to miss the film, and that everyone makes mistakes without the world ending. She got me breathing steadily. She encouraged me to get out my phone to look through my strategies.

At this point I was coming down from my meltdown, and my shaking, my clenched fists, and my short sharp bullet breaths were replaced by a gentle sobbing. I knew my face was bright red; I could feel it throbbing, feel the ache behind my eyes where I had been tensing all the muscles in my head. I also felt ridiculous. I always feel foolish after a metldown, but one in public is worse. I feel like a public spectacle, hearing the out-of-place sitcom audience laughter in my head. I wanted to curl up into a ball and huddle away from the eyes.

My mum wouldn’t let me though. She started talking about other things. She started being silly. She started making me laugh. She started doing all the things she knew would work to make me feel better. It didn’t feel like the eyes were on me any more. The eyes were on both of us because we were both having a good time.

This could have absolutely destroyed my day. But it didn’t. I had a lovely time.

The event was wonderful. We got there half an hour before the film was due to start, so we had the chance to look around. I held my mum’s hand in the crowd, knowing that no one there was going to judge me for it; I joked that I had my ‘post-meltdown face’, red and tear-streaked, and could joke about it because no one cared.

Meltdowns are exhausting. This one was no different. But the cinema rooms were spacious. The chairs were comfortable. I could stretch out, curl up, lean on my mum, do whatever I wanted without bothering everyone. I began to feel more relaxed. I was still tired, but I no longer felt like a zombie. There was even air-conditioning, so my post-meltdown face had miraculously vanished by the time the film was done.

And when the film came to its end – and it was a fabulous film, a coming-full-circle kind of tale in the vein of Toy Story 3 – I was smiling. I was happy. We got a goody bag, we went and had a crepe, we talked, we laughed, and we headed home.

My meltdown didn’t ruin my day.

That’s not to say that meltdowns will never ruin my day again. I’ve had good days despite massive meltdowns in the past; equally, I have had plenty of meltdowns that ruined my entire week. To have an entire day thrown into the rubbish bin off the back of a meltdown does not mean that I have failed. Whilst I live in the world as it currently turns, I will have meltdowns. Sometimes, I will recover. Sometimes, I will not. I prefer it when I can pull myself back, with the help of the strategies I have worked hard on and the family that has worked hard with me, but I don’t want to beat myself up if I can’t.

It’s not a failure to have a bad day.

But yesterday, and the amazing time I had with my mum despite one of the biggest public meltdowns I’ve had in a while, have reminded me that it isn’t the end of the world if I fall apart.

I can have a public meltdown and a good day.

And they are absolutely, definitely not an oxymoron.

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