Labels

Everyone’s first experience of a label is the one they are given at birth. The one about 99% of us carry with us for our entire lives: our sex and gender. Everything you do and anything you will ever be is determined by that label in a patriarchal society. Those of us who reject the label given to us at birth are shunned by society and subject to systemic discrimination, yet society at large doesn’t seem keen on labels as a whole.

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Fast forward to 1999. I’m 14 years old and I’ve just started a new school. (I had to leave/was expelled from my two previous schools due to being bullied.) I’m into heavy metal and punk, so obviously I gravitated towards that group of people. The other kids called them, “Greebos” or “Greebs” but the most popular of them decided that labels weren’t cool so we never used the term. It was the same with the widespread bisexuality. If we didn’t talk about it or label ourselves we weren’t really different. We were just the same as everyone else, but we wore black and slept with people of multiple genders. (Yes I was having sex at 14.)

This situation didn’t last long for me and I ended up hanging out with the kids in the year below. They embraced labels and were subsequently called losers by the people I used to hang out with in my year group. We were Greebos. We were lesbians, gays and bisexuals and we were proud, even if just within our friendship group. We went through the same struggles together and our bond and our labels kept us together and kept us strong. I fell in love for the first time in 2001 with one of these people. We called ourselves lesbians and that stuck with me for the next nine years, even if the Greebo label faded into metal-head as time went by.

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So what are my labels now at 32 and what do they mean to me?

Autistic

I’ve been using this label since Feb 2017, when I truly accepted that this was who I was. A year later I had an official diagnosis.

I don’t say I am someone with autism. Autism is me. I am autistic.

Realising I was autistic was super validating for me. It explained a lot of my past behaviour and allowed me to find friends who were similar to me.

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Transmasculine Nonbinary

I am transgender. I lean towards masculinity. My transition involves testosterone and masculinising surgeries.

I am however not a man. I’m also not a woman. My gender identity and subsequent presentation fluctuates and sits well out of the norms for binary genders.

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Metal-head

I love all music actually but my focus is definitely focused on metal, punk and hardcore. I often dress in what can be considered as metal-head attire.

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Queer

Truly I am pansexual, but I like queer as an identity.

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Why are labels important?

My labels have brought some of the best people into my life. We have bonded over similar struggles and we have stood strong in the face of transphobia, homophobia and ableism. They give me a blanket of safety I can run and hide under when the allistic, transphobic world gets too much and they understand exactly why I need to do that.

It means when I’m out at the pub with my friends I’m not gonna get misgendered or called aggressive because of my autistic style of communicating. It means I was encouraged to be my authentic self at Trans Pride by being topless . It was the safety of having these people around me which allowed me to work up the courage to medically transition.

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We can also help other marginalised groups. They define who they are and the systemic discrimination they face. We listen to them and lend our privilege to help where it is needed. Without labels, I don’t think we would be able to do this so effectively and this leads on to my next point;

Why doesn’t society like labels as a whole?

In my experience oppressors don’t like labels because for them it means they are not the norm and when we use them, we use them to empower ourselves against their oppression.

For example cis women who reject the use of cis, even though it is literally what they are. They don’t like it because they have always just seen themselves as normal women and that trans women and femme aligned people are deviant in some way. This is often combined with TERf rhetoric. (The F is small deliberately cuz ain’t nothing feminist about their tripe.)

Another example is allistic people. This just basically means you aren’t autistic. Allistic people hate it because they see autistic people as abnormal and they are just normal people. Wrong.

So let’s embrace our labels and the labels of others, banding together to empower one another and bring down systems of oppression.

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My Autism Journey

October 2016

I met my best friend, who also happens to be autistic. She observed autistic traits in me that no one else had in the 31 years previously.

I was sceptical. I was almost 32 and no one had ever even considered I was anything other than neurotypical (outside of depression and anxiety) but what she was saying made sense.

She pointed me in the direction of online Autism Quotient tests. I scored between 39-42 on pretty much every test I took. She scored 39 and had an official diagnosis.

February 2017

On the 22nd February 2017, I accepted that I was autistic. I sat crying into my phone messaging my best friend saying that nothing had ever made so much sense to me in my life.

With research I’d been doing over the last few months I came across some great trans and autistic communities and realised that some 35% of autistic people are also trans or gender nonconforming. (I wish someone would study that link.)

March 2017

I went to my GP and told them that I think I’m autistic and gave them a list of reasons why. They asked me all sorts of intrusive questions that I didn’t like. I left that appointment crying and proceeded to have a meltdown in my car. (I’d also spoken to them about trans issues in this appointment and the questions about that were so uneducated and misinformed. This was also to be my downfall going forward for both issues.)

May 2017

I attend my first appointment at Trealaw Mental Health Unit in South Wales.

Expectations: GIC referral and referral to a consultant psychologist to be assessed for ASD. (Autism Spectrum Disorder.)

Reality: Nonbinary erasure, intrusive questions, disbelief that at 32 I was only just realising I was both trans and autistic.

I went over again all the things I had told my GP using my list I created, breaking down different behaviours in blocks of 5 years up until the present day. The nurse I saw took a photocopy of the list and said that they were unable to refer me me further because they were not a consultant and they didn’t know when a consultant would be available to see me.

June-October 2017

The above situation happened a total of 7 times, including an appointment which had a blood test in it to see if I was able to go on testosterone. (Talk about getting my hopes up!)

It was so draining, intrusive and destroyed my mental health. My drinking increased ten fold in this time. It was the only way I could cope with the constant invalidation and disappointment. I had a meltdown in my car after every appointment.

I also had an autism advocate write two letters of complaint. Each time I got a call from the head of mental health in my county apologising. I kept telling him that I thought someone along the line was gate keeping the pathways and that I wasn’t going to give up. I made it very clear that we could continue wasting NHS time and resources for as long as he wanted.

November 2017

I get two letters in the post.

The first one comes with clear instructions as to what the appointment is for. I’m going to see a consultant to be assessed for ASD. The appointment is in January and they need me to fill out a written autism quotient test and bring it with me.

The second letter has no details on it, just an appointment at the standard mental health place in February. (It was cancelled due to snow so I still don’t know what this was for, but as of Feb 2018 I still don’t have an NHS GIC referral.)

January 2018

The day of my appointment with the consultant is here. I’ve deliberately got myself in a bit of a state by messing with my routine and having lots of appointments on the same day to emphasise my autistic traits. I mask quite well sometimes and that was definitely not needed here.

I rock up at Trealaw Mental Health Unit only to find that my appointment was at the Royal Glamorgan Hospital and not the place I had been attending for the past few months. They took my AQ test and rescheduled the appointment. I went and had a meltdown in my car, which seems pretty standard practise for all my visits there now.

February 2018

The day itself  before my appointment was incredibly stressful for reasons I’m not going to disclose. My best friend met me in Pontypridd and I was in full shut down mode. They had never seen me like this before. They dropped me at the Royal Glam and wished me luck.

The consultant was late. I’m not sure if this was deliberate, but I was basically twitching and trying not to have a meltdown by the time he eventually showed up.

We sat and chatted for about 2 hours. He changed his fountain pen twice with the amount he was writing. He liked my now rather scruffy piece of paper with the age categories and developmental milestones. (He took that otherwise I’d show you a copy now. ) He asked about relationships, social difficulties and all sorts of stuff about my childhood. I told him I live in the world below eye contact and I miss a lot of social cues because of this. I looked at his face twice but not his eyes. I wouldn’t know him in the street.

I’m going to attach an edited version of his report so that you can see the criteria he was looking for. However please be aware that he misgenders me throughout and I have asked him to edit this in the copy he sends to my GP. (It was difficult for me to read because of this.)

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I’ve shared this process with you in the hope that it will help you if you are an adult seeking diagnosis in the NHS or elsewhere. Please feel free to ask any questions.

The search for the illusive GIC referral continues……….

 

 

Too Much Information

Since February 22nd 2017 I have been acutely aware that I am autistic. It has opened up my world significantly and lifted the severe burden I’ve felt for my behaviour all my life.

I have a good friend of mine to thank for this awareness. Her name is Selena. She is also non-binary and autistic.

I struggle around people in general, but I don’t struggle around Selena so we tend to do social things together. Last night she invited me to a bit of a DIY, house party gig.

We got fairly wasted. Towards the end of the night, she got up and did this spoken word piece. The room was silent and enthralled by her every word, especially me because every word rang so true in my heart and in my head.

I’ve asked for her permission to share this here and she delightfully agreed.

Too Much Information

Aut…ism

Aut meaning self

An ism of oneself

A glass jar I live within

As I watch you all

Detached from your presence

I watch

I see you

I see your silver hooped earings

As you tick tock your head to the rhythm, they dance along

They snatch the light, bright

Like floodlights in my line of sight

 

I see you.

I see the gravelly knit of your sweater

Like volcanic pebbles

Tumbled and tossed for a million years

And for a moment I am there

Wading, my toes cold in the spring water

 

You, I see too

Your hands clasping the tight lens of your camera

Twisting your fingers around the dials

I see the grain of the wood

The dampness of the soil in the jars and the harp and the German stoneware

I dive into the pattern of the mandala-like tapestry behind me

I’m hypnotised and I count

Mandala, mandala

I like that word

I repeat

Mandala

Like a mantra

Mandala

Mandala

 

I obsess

In my head (mandala)

My head is tight

I’m taking in too much information (mandala)

The light from your earrings

They’re beautiful because

(Mandala), because

They match the solver of your hair

Is that ok to say?

I never really know you see

Do you like this pattern?

It reminds me of a mandala

Mandala

I love that word

She’s not answering me

Her earrings are so shiny

 

It’s loud in here

I can hear the people breathing

Their sleeves rustling as they lift their arms

Slurp of their lips on their cans of SA

My heart is racing

I look at the mandala

I want to be here in the room

But I’m not

I’m in a glass jar

I can see you

But I’m not really here

On my face is a smile and my tongue is rowdy

Yet inside I’m shrunken

Drunken with over stimulation

I’m curled up in a ball, small and tight as my fist

Shielding my brain from all the information

Cos it’s loud and inside I’m screaming

It hurts and it’s really, really uncomfortable

I may look like like I’m not paying attention

But I want to be here

It’s just too much information.

 

By Selena Caemawr