ameatmachine

[ameatmachine]

Addendum to Identity

At least once a day, someone asks, “How are you?” The dreaded question, because truthfully there’s a thousands thoughts and sounds happening right now and the window for a response is so small, so the easy out is, “Yeah not bad, you?” It is hard because most often it is not a genuine question, but a basic greeting. It is not easy to parse out whether it’s one or the other. When it’s not a question it is confusing (why is a question not a question?) and when it is, it’s a sobering reminder of how I feel.

Because, truthfully, I feel hollow. More often than not what I feel is nothing. It isn't depressive; there is still joy in things. It is an overpowering neutrality much like a veil of thick fog. This is the default state but it seems at odds with how most people operate. For most there is a feeling present. Not just a thought or a contrived emotion, but a ethereal sensation that indicate a particular set in that moment. This is what I’m led to believe at least. There is a word for this lack of interoception; Alexithymia. Fun to say but basically it refers to a lack of insight into one’s internal feelings, emotional and physical. Not all autistic people experience this, but it is a common co-occurence.

As you might imagine, encountering small talk namely the big question everyone likes to pose, “How are you?” I am reminded incessantly that even mustering the name of a feeling - any feeling - is a huge effort, especially in the yawning maw of an opening encounter that is Conversation. For so long I concluded that I just don’t have emotions. This is not true, it just takes a concerted effort to dredge up what I might be feeling in a particular moment.

A diagnosis has meant I can confidently and evidently identify as some thing instead of the tabula rasa of a bag of meat I envisioned myself as. My psychologist often refers to it, quite clinically, as a ‘classification’. He made it clear that it is not necessarily a box to be placed in. It’s good how he does this because it gives me room to work in and around particular thoughts without the constraint of a specific way of being. It’s a vindication though, tantalisingly so that I willingly place myself into this Class.

That 'identity' is becoming an ever larger part of who I am despite all of the mental acrobatics I’ve practiced over the years to becoming invisible, successful in the eyes of others. I am this thing this classification and that seems like an appropriate way to think about it. There are many individual experiences in the autistic experience that can be understood by the bulk of the population, but it is the sum of them that coalesce into the autistic experience. This is what puts us - me! - into this Class of beings; rather than being a slightly eccentric, unwieldy, awkward, I can place this sense of self into a category, confidently and safely.

The idea of ‘safe space’ is increasingly common now in response to generations of persecution and suppression of specific groups. It made sense to me of course that everyone deserves to have some kind of place or forum to just be as opposed to fighting for their right to exist constantly. It wasn’t until I fully submitted to the idea of being autistic did I begin to understand the real value of this idea of a space that is safe, because the more I reflect the clearer it becomes that most of the time I don’t actually feel safe. There are still parts of me that even in private I am ashamed - afraid - to foster like stimming behaviour which occasionally surfaces but more often I suppress.

This I think is how I experience autism. I function rather well in various different social scenarios aside from seeming a little bombastic, awkward, or arrogant. When I’ve disclosed to others I’ve already had the pleasure of hearing the classic line, “You don’t seem autistic.” I don’t have meltdowns, but the feeling of shutting down is all too familiar. In spite of all of my capability and social agility that I have learned, I do not feel comfortable, I do not feel safe. It is work to do all of these things and I count myself lucky that I have the capacity to manage to oversee these processes while carrying out a ‘functional’ life. I have managed.

Tolerated is a good word. Tolerated the transitions in life, tolerated chit chat, tolerated sensory overload. This is the doubt. Do I deserve the respect for my space? If I can tolerate all of these things, why do I deserve to publicly put myself into this set of people, many of whom struggle far more than I ever will?

Maybe because when I scroll through instagram, see in the news, or meet someone autistic I feel something. A kind of sympathy, or empathy, that is so foreign in any other circumstance. When I read these stories I can relate and I can feel a little more connected to the world. It begins to feel a little more familiar; something foreign but pleasant. Is this how empathy feels? Is this the space that I need to be in?

Most days I feel hollow and it is hard to discern between the shifting shades of my personality before I collapse and shut down at the end of a busy day. There are no lines to read between and the backstory is blurry. It feels like an important beginning for sure and starting from the very basics. It will be a long time until I can work out who this person is but the classification fits so right. I can’t imagine another way of putting it and I love hearing and reading from autistic people because the way they express themselves makes me feel at home, and makes my blurry past feel less cryptic.

This is the addendum. Now there is context, something vital that was lacking before. Now instead of silhouettes on the street, there are lives being lived. Conversely, by being open about myself, I am hoping to become context for someone else. Writing about myself is a selfish exercise which I am trying very hard to not feel guilty about, because it is space to unreservedly articulate my thoughts. The hope is that my words can be a proxy for someone who cannot articulate in language their own thoughts.

So for the case of the big, bad question, when you ask “How are you?” how would we manoeuvre it? How best should people of differing neurotypes navigate an otherwise unequivocally standard social protocol? Honestly I haven’t worked this one out yet and it feels silly to ask that people stop saying it. The best start is to not assume that what is easy for you is easy for another. Be curious, create space, and offer your patience so over the course of an interaction that you may find trivial, the other person can find the conceptual space they need to reciprocate, and when they cannot or choose not to, do not be offended. Not everyone has to be friends, but we can all respect the space we each need.  

[ameatmachine]

Saturday Night

In all the 6 months I’ve lived here, this is the first night I’ve sat in the courtyard. It is cool and a little humid, making the air thick and sweet. It carries so many smells of the night, in these quarantine time; wood fire smoke, cigarettes on the balconies, sautéed onion, car exhaust, twilight dew. The thrum of cars pottering by, cranky old trucks accelerating past, delivery scooters zooming by every once in a while. Snippets of conversation from pedestrians making their way home from the bottle store, wine bottles clinking in hand. I sit facing the apartment block, looming several stories above me, mostly dark, but beating with living energy, the thumping of footsteps and chatter in every unit.

Long, slow breaths. The cooling mist fills my lungs with each one; it feels like the first breaths I’ve taken in years. Today is the start of an extra long weekend. Time to think, to reflect and ponder on the myriad of questions that have been taking up so much bandwidth for months. The last holiday was 6 months travelling around Europe with my ex partner. While there were some truly incredible experiences on that trip, it was still symptomatic of a life of feeling displaced. Once home, I felt depleted by half a year of moving and noise. It was an exceptional holiday, but an extremely taxing one. This week however is a change, a chance to put new ideas and new philosophies to work, to begin healing.

When I was little, maybe 5 or 6, I saw the first Pokemon movie at the local theatre in my home town of Bognor Regis in England. We got the movie on VHS, so I could rewatch it. Even as a small child I was captivated by the very opening scene with Mew, this little alien Pokemon exploring a strange, exciting world asking itself, who am I? What am I? It stuck with me all these years, a question we all ask ourselves in those quiet moments of solitude. This time feels different though because now there’s context for all of those odd feelings. Where do you start with constructing an identity?

Eye contact has always been really hard. In high school I remember regularly training myself to look other people in the eye when having a conversation. It was concerted practice, and it became a game, much like many social interactions. How long could I hold that gaze before breaking away? For a while, it worked. I got good at it. Really good. Then at some point life got a bit more stressful, busy, demanding.

At some point all that progress had gone, and I was back at square one. It felt demoralising. I felt less valuable, like I couldn’t do such a simple thing anymore. Since then there have been good and bad periods at doing it but by my twenties I had given up on all of that ’training', resigned to the fact that this was just not something I was capable of. This was about the time I started my first relationship, that would last nearly 5 years and end just last year. This was the beginning of something really exciting.

Still, it was daunting, because I had managed to skim through my formative years at high school without engaging in any significant social events, and complete a 3 year Undergraduate without making any new friends at all. This was going to be a demanding part of my social history. It was important. Yet I still couldn’t hold eye contact. The experiences I had in this relationship were a net positive, and there was a lot of growth over that time, but even after nearly 5 years of growing close and sharing all our time together, this simple thing, this very basic human behaviour, would set off alarms in my head and make my gut feel like it’s in free fall. I just couldn’t do it.

And that hurts.

The self accusations begin, that I don't try hard enough, that I don’t think they’re worth it, that I don't care. That last refrain is too familiar. Too often, in spite of every fibre of my being believing and trying to show that I care, sometimes you’re told it’s still not enough.  

When you are having a conversation, and looking at someone’s face, you are expressing with your gaze that yes, you are listening to them as they speak. For me though, I am trying desperately to not get distracted by the peculiar wrinkles and dimples in someone’s face, the unique texture of their skin, trying not to notice the shape of their head, trying not to be overwhelmed by the micro expressions of the person’s iris’ and the complex movement of their lips and tongue as they speak. Oftentimes I find someone strikes a particular, odd facial expression and it frightens me slightly. I don’t know why. It gets stuck in my head, and I can’t get it out, and then I’m having even more trouble focusing on what this person is trying to tell me. It is always an uphill battle to stay attentive.

The reasoning and implications of seeking diagnosis for ASD is something I’d like to think and write more about in the future, but it is still something I am trying to fully understand. What is sure though is having a name for this thing, having a whole community of people to read and draw from, is incredibly empowering. Recently I have had the confidence to begin asking some friends directly if it is okay to not have to look at one another as we talk. It has been such a huge relief to be able to pinpoint a difficulty, and to then have the confidence to ask for the support needed to accomodate for it.

So by being open about a diagnosis it gives permission to ask this small thing of people and it is the beginning of an identity that I want, rather than one that society expects and demands. It feels good, it feels empowering to be able to engage more in a conversation and properly process words. I can focus better in a conversation when I look at the ground and flick my eyes around, scrambling visual input a little so I can focus on the auditory input better. Since doing this, I’ve had better conversations with people I’ve known for some time, feeling more connected with them through what they are saying. By asking for this small accomodation and receiving a little more patience, it’s even made verbalising my own thoughts a little easier because the other person is giving the space that I need to feel comfortable and communicate.

The real dilemma arises when it comes to the passing conversations in the day to day. It’s really easy to be self conscious about asking for these kinds of small accomodations from people you don’t know as well, so while it’s wonderful to be allowed to be yourself a bit more in some spaces, outside of those spaces the mask slips back on and the work begins again.

This is one of the thoughts to ponder this week. I’ve learned that I am happier when I can ask for space to be more comfortable but there is the constant threat of other people, hidden social agendas, and professional standards that are expected. We live in a world that values hurriedness and noise, but all I want right now is quiet, slowness, structure, and patience from others, and just a little bit of help. There are lots of people that make you feel wrong for wanting these things, but it should be okay. It is a matter of working out how best to ask for help.

[ameatmachine]

“I”

For as long as I can recall I suspected I was autistic, a far away possibility that would explain all of the odd sensitivities in my young life. In high school, I made a friend with a kid with Aspergers, or maybe he made that with me I don’t know, but there was something comforting in the way we interacted. The pace of our conversation, the content, the feeling was different than everyone else. Something worked there that didn’t work with the other kids. So the question would pop up every now and then, only to be pushed away. Surely not. I’m far too well adjusted. We are still friends and I am so glad we are because I immediately had someone to go talk to when I was seeking a diagnosis.  

The implications that are only now beginning to dawn on me are far too complex to enumerate right here and now. No, what this is for is to set a precedent for the future. Make a statement. Mark a moment. Celebrate a milestone. All things I am very, very bad at.

A few weeks ago, that friend and I went to a local meetup group for those with ASD. While my friend drove there early, I took a tram and a bus to get to a little cafe some ways out of Melbourne. I got off a few stops early to enjoy a short walk, and as the sign for the cafe came into view I suddenly became so nervous. I was breathing quite heavily and my stomach was doing backflips. This was all very confusing.

Up until now I had done so well entering new situations, the scripts were so well rehearsed, my body language so practiced and confident. So why was this so scary? Here I was after years of pondering, finally admitting to who I thought I really was and put it on full display for a group of complete strangers.

I was absolutely terrified. Terrified of myself. Who I might actually be.

Bracing for the noise of the outside world, I removed my headphones and approached the cafe. My friend already seated was the only thing motivating me to stay. Never has an event been so great, so thrilling and life changing, that I can distinctly recall it. Life is a big blur. I cannot even remember the date or the details of when I first had sex, which I’m led to believe is meant to be pretty memorable. This one feels extra important though.

I took a seat, my friend, and one other guy. A stranger. Usually with strangers I have my game face and rules of engagement ready to go. But no, I told myself, not today. My friend introduced us, and to an outsider what ensued would have been a clumsy, awkward exchange. For me though it was the first in many moments that day that proved a lifetime of guilt utterly wrong. As we spoke, we avoided each other’s gaze, eventually not even looking at one another as we spoke.  

My god. He’s just like me. I’m not the only one.

I was positively energised by this conversation, which is entirely unheard of in my full history of ever making conversation with anyone. Talk is cheap, and very taxing.

Before I knew it, I was meeting people and having entire conversations not once looking at anyone’s face. The talk was simple, lacking sub texts, and primarily informational. Absolute heaven. No shaking of hands. No faking facial expressions to indicate responsiveness. No confusing tone of voice. No hidden meanings or implicit suggestions. Just straight chat.

On the train home I was absolutely buzzing with energy (later on crashing, and feeling exhausted for the rest of the week at work). I felt amazing because for the first time I had actually enjoyed spending time with, and getting to know, complete strangers. This is what having a real human conversation must feel like!

That day was empowering, and inspiring. 26 years of thinking that feeling like a lonely star in a black sky was the norm. An entire life feeling like an alien, accidentally adopted by a (very wonderful) family and raised on human culture. A life lacking intuition, suddenly it something clicked, and I am no longer alone.  

I have learned that I have agency, that I exist for myself and not others. I am thinking hard every day, ruminating on every memory to make peace with every time I was made to feel guilt or shame. It feels like it will take another lifetime to fully forgive myself.

Up until now I have become very, very good at being quiet - invisible - in an attempt to avoid attention, their burning gaze. Do I want to keep that up? Hope that nobody notices me? A life of fear that I might be found out to be the fraud I am, if I say something slightly wrong or worse, the truth slips out?

No, I don't.

Every autistic person I have met so far, every one who has spoken publicly, and every one that has written about their experience has been such a huge inspiration and I am quickly learning just how little neurodiversity is understood. Only until I began listening to these people did I realise that my idea of autism & neurodiversity was extremely narrow. So how the hell was I meant to understand myself? I am lucky to have arrived at this conclusion, and there will be so many others who are not so lucky.

There has been books and videos and articles by a huge array of autistic people that have also made a huge impact of how I understand autism as a diagnosis, and as myself. I would like to spend more time in the future sharing these, and thanking the authors individually, because they have been a huge motivation in deciding to make this a distinct part of my newfound identity.

So my choice has been made, to mark the start of a life that actually makes sense. I still don’t know how to talk about it face to face. I don’t know if I will ever be comfortable stimming in public, when I still feel shame doing it alone. I don’t know if I have the confidence to stand up for my right to not make eye contact. I don’t know if I should be masking, how much, and why. I don’t know how, or even if, I will manage another long term relationship. I don’t know how to politely communicate my distaste for people touching me without my permission. I don’t know how I will be able to keep seeing my friends at bars that are just way too loud.

I do want to keep writing, talking, sharing. I want to make sense of a life lived wrongly blaming myself. I want to be seen and heard. I want to articulate what I find hard and what I find beautiful about being autistic. I want help from others, and to help others. I want to meet new people and make new friends. I want to be a part of a community, and a part of the world. I want to be the most honest version of me. I want to stop hiding in fear.

As one friend put it, this is my coming out. I am autistic and I am not alone anymore.

[ameatmachine]

intro

I need to say something. I need to decide something. 

And if you know me by name, this will be your free crash course. 

I am autistic. Have been all my life. Didn’t know it until now. 

Thought I did occasionally, but nobody really agreed. So I stopped bringing it up. Just a bit weird instead. 

Just eccentric.  

Told my parents, regularly, “Wouldn’t be surprised if I am adopted.” 

They weren’t terribly pleased. 

The only ginger in the family. The only geek. The loner. 

Have cousins. They really like their sports. Growing up, I never wanted to play with them. 

Never really wanted to play with any other children. 

Memories are place, colour, geometry, flavour, smell, pattern, brightness. 

They are not emotion, since those I cannot recall. 

The world is big, and loud. Humans are busy, and confusing. Crowds are menacing. 

But I had to grow up, be a big boy. Gotta do what you gotta do. 

Headlights hurt my eyes. 

Panicked that the self-serve checkouts are closed. 

Speech directed at me garbled by traffic noise outside. 

The phone rings, palpitations follow. 

Trying to be the confident young man that I saw people liked seeing. This is all wrong. 

I am sensitive. 

Fearful. 

Confused. 

Angry. 

Meek. 

Tired. A lot of the time.

The rich purple blooms down the road, across from the park, fills me with intense joy. 

Someone I know can smile, but they can be angry. I cannot balance that equation and I feel terrified.

Bursting to share a new fact I learned, and they look at me like I am a child. 

The burning when I try to look someone in the eye. 

This will be raw, there is no promise of virtuosity. 

This will be how I process my thoughts, reframe my life. 

Just to get the words down, good ones or bad. 

This will be my voice alongside many others who share this version of the world. 

A version I thought I was alone in. 

I am still reluctant to have autism, to be autism. I barely know what it means for me. 

So first, I have to learn how to feel. The first obstacle. The hurdle I never cleared. 

We all suffer, that is what it means to be alive.  

I hope by baring mine, others who do, might see an ally or a friend.

Just last week I met others who feel as I do.

Complete strangers, meeting just to socialise.

What a foreign concept.

But suddenly, I felt like I belonged.

This is who i am.

This is who I want to be.