Experiences Of Northern Pride From One Autistic, Trans Queer Woman

 

 

 

My experience of Pride was surprisingly good yesterday. Of course I never approached the main stage or the dance tent or the cabaret or the fair ground. With my sensory issues it's hard to be there at all. I have to miss out on some of what is on offer. And I admit that I miss out on some of it by deliberate choice.

I'd had a difficult morning. Much anxiety and tears and I wasn't going to attempt Pride at all. I was going to Durham - to give my soft toy a birthday adventure because I'm odd like that. But I decided we'd go and see if being part of the parade was possible. I had a look but it was too crowded and noisy and I wasn't coping. There was an opportunity though for the birthday toy to meet the mayor of Newcastle and to point out to a vegan that the flag she'd been handed was representing Nando's.

Later I found myself watching the parade. That's a new experience for me. I've never watched it before. Keep together next year guys! Too many big gaps were forming.

But about two thirds into the parade a friend from Spectrum Theatre - a group for autistic adults - spotted me and dragged me (I exaggerate) into the parade. So I paraded and wished I hadn't left my trans flag at home and had dressed more wildly for such an occasion. My soft toys paraded too of course and really enjoyed it. Because I'm odd like that. Everyone was fortunate. The weather forecast was for lots of rain but the parade was dry and much of the day remained dry too.

I saw more trans flags being toted than I've seen before. And noticed more of other flags too - I hardly saw them at all other years. Bisexual, Asexual, Pansexual, Poly. It was good to see. Pride events can forget to be properly inclusive and sometimes they've been known to actively stand in the way of proper inclusion. These flags had nothing to do with the organisation of the event but each one clearly stated "We WILL be included. We are here and are not going away."

I wasn't going to enter the actual event. I knew I'd want lunch and you're not allowed to take lunch with you. No more friendly picnics are possible at Pride unfortunately. I also knew it would be very noisy and that it's always hard work to be there. But I entered the event. Knowing there would be free pens inside.

I hastily drank my bottle of tap water on the way in knowing that it would be binned otherwise. The signs say "No alcohol" can be brought in but I knew from last year that my tap water would be confiscated too.

A couple of the delights inside:

The worst thing I experienced was the stalls - from relevant LGBT+ groups, local friendly crafty people, and corporates and unions. It wasn't the stalls themselves that were bad. But the gap between the rows of stalls was just far too narrow. It can't have passed the minimum width for health and safety by much. It was really crowded and it was hard to move or to see everything and I got pretty overwhelmed with it. I know a lot of people found it difficult, including the stall holders. Northern Pride need to take a good look at this because it's just uncomfortable and it's not as if there's no space to spare to make it a much more comfortable experience for everyone.

The most enjoyable thing for me was the youth and children's area and not being turned away from it by a grumpy security guard like happened a couple of years ago when I actually had a reason to be there. I knew that a woman who does lots of woodland and craft things was there this year so I went in and made a dream catcher with her. The main tent had lots of craft activities and also had a sensory area run by Sensory Spaces an excellent local charity working with autistic children. In that area I found friends who happened to be there. It was pleasant and relaxed. It was also at the point furthest from any of the different music going on around the site.

It was also good to bump into lots of people I've met in different places over the past four years. Only one of those places, Northern Lights MCC is directly connected with queer issues. I'm fortunate to have found safety and acceptance in so many other places and to have found good people almost wherever I turn.

I spent zero at Pride. One of the stalls had free bottles of water and I was able to finish off a cake at the Northern Regional Gender Dysphoria Service stall in the health zone. That was enough to get me through. Hoorah!

I left the event just before five o'clock. Others may stay until midnight and then go and party the night away. But five o'clock is a record for me. By that time I'd had enough and I was wandering round the health zone in a "Clare has quite an obvious learning disability" kind of way that happens when my brain has really had enough. I have an IQ above 150 and have many coping strategies. But sometimes autism becomes very, very obvious.

That was my Pride. I'd thought about going to a Pride service with the Unitarians this morning but they had to cancel unavoidably. I'm glad the local Anglican Cathedral offers a Pride service too and that it isn't the only church in the city centre to hang rainbows. I don't think I can make the vigil service tonight run by MCC. That's a shame.

The picture by the way is from last year. If I'd known I'd be parading again this year in dry weather I'd have taken my placard again. And left everyone wondering what the hell those flag colours might represent.

In Which Clare Says Something Unpopular About Her Autistic Life

This one is hard to write.

It might not be popular.

What the heck?  I'll just free write it and see how the words come out.  I hope that my community of autistic people will hug me rather than crucify me.

I am in my mid-40s.  For pretty much all of my life I have struggled.  Every single day.  Things used to be a lot worse.

I used to struggle with depression.  Every single day.  Even on the days when I wasn't actually depressed according to any diagnostic criteria there was a dark, dark shadow falling over me and I knew that the depression would return at some point.

I did not like myself and believed that I was, fundamentally, some kind of monster.  As a result I embraced a conservative version of a faith that bolstered my own belief.  It said that yes I was, fundamentally, corrupt.  An evil being, deserving only to burn for eternity in a hell so awful that it was beyond imagining.  That's what the faith taught.  It taught that we were all like that.  Evil.   But it was okay.  Because it preached a God who gave a way out of the consequences of our own disgusting sinfulness.  It preached a solution.  Not necessarily to our own evil.  At least not in this life.  But a solution that meant God wouldn't be angry anymore and wouldn't throw us all in the fire for ever and ever and ever.  I already believed in my own monsterhood.  And so I embraced that faith thoroughly.

Yeah, I did not like myself.  And conservative Christianity gave both hope and an excuse to keep on saying mea maxima culpa.  I have grievously sinned.  And so has everyone else.

That all changed three years ago when I embraced and welcomed myself as a transgender woman.  The dark shadow lifted for the first time in my life.  In one day it was gone.  It was like a miracle.  A miracle I had prayed for over two decades of faith.  In many ways it was a miracle.  For someone who believed as I did to say "Yes, I'm transgender and that's okay," couldn't be described better than with a word such as miracle.

I had already begun a process of healing, of moving from self hatred, self abuse, hopelessness that I could ever be truly happy or content.

From that day I began the process of healing, of coming to the point at which I could honestly say I both love and like myself.  The process is still not complete three years later.  I have come a very long way.  But there are still moments.  There are still unfair self critiques.

The shadow had gone.

But that didn't mean everything was fixed.  Yes, I had a long spell of euphoria.  A long period of exploring the new freedom to be myself.  And - in amongst all the fear, the verbal abuse, the struggles that most transgender people share - all of that was wonderful.  More than wonderful.  Today I don't quite have the words to describe what it is like to live under that shadow, that crushing weight, that night of darkness, and then to have it all lifted away and to finally see the sun and know that the shadow will not return.

But after the euphoria, then what?

Then I had to look at myself honestly.  And see that many of the struggles I had always known - every day - were still there.  Social struggles.  Sensory struggles.  Anxiety struggles.  And removing my depression, removing my self-loathing, didn't remove these struggles.

And these were things I had been trying to solve for most of my life.  They were things I had received therapy for.  I had read the self help books.  I had prayed almost unceasingly at times.  Through the treatments for depression (which never worked because they didn't tackle the cause) I also sought treatment for my own struggles, struggles I thought intimately bound up with depression.

I looked.  And it was all still there.

Unsolved.

Uncured.

And although I didn't talk about them with everyone like I do now, they affected my life profoundly.

People didn't know.

My coping mechanisms and the masks I wore made it look for the most part that I was reasonably okay a reasonable amount of the time.

I struggled on.

Social struggles.  Sensory struggles.  Anxiety struggles.

I wanted them solved.

To put it bluntly:   I WANTED A CURE.

____________________

And then, nearly two years ago I started to think about myself another way.  I got talking with some people about their lives.  Their problems.  And I realised through much thought, much discussion, much reading, and much to my surprise and shock, that something which was true for them was true for me too.

They were autistic adults.

And I learned that I am an autistic adult too.  I'd been putting off learning that truth for many years.  Because of stigma.  Because of shame.

The process of realisation and acceptance and then seeking diagnosis took much of last year.

It was incredibly difficult, far more so than anything else I have ever done in my life.  I thought it would be pretty easy but I turned out to be completely wrong.  Hey, I've gone through the gender transition thing.  At least socially, although the medical side won't be done and dusted for a long while yet.  The medical side is simple.  The social side is complex.  And the acceptance of myself as Clare, when it finally happened, was quite easy.  Gender transition isn't easy.  Surely a little thing like autism would be a doddle after the whole changing my name and wearing frocks thing!

Autism. 

Now that was hard.  Excruciatingly hard.

One word changed everything.  Every single aspect of my life and my being needed to be reexamined in light of that word.  Everything became open to intense scrutiny as I began to understand myself a lot better.

It was hard.  It is hard still.   It's been ten months since the official diagnosis.  I am still working through the ramifications.  People tell me it's a process that can take many years.  People agree that it can be tough.

But this new knowledge was wonderful.  Totally, beautifully wonderful.

Now I had an explanation.  I had a reason why things had always been as they were.

There were so many things I had always felt guilty about, or ashamed about.  And now they had a word.  They had a name.  There was a reason for me being as I was.  There was no cause for guilt.  No shame.  No whipping myself about social struggles, sensory struggles, anxiety struggles.

And in that I could breathe.  In that I could find pride in myself.  Autistic pride.  I hold it still.

But.

Social struggles.  Sensory struggles.  Anxiety struggles.

Every single day.  Without remission.  Without rest.  Without any break at all.

There are much better days.  There are much worse days.  But they are there.

In some way they will always be there.  Always.  Always.  Fucking Always.

This is my autism.  This is how being autistic plays out now.   For forty years.  For many years to come - hopefully many, many years because I would dearly love to live as many years as someone who knows herself as an autistic woman as I did as someone who lived as a man and would never have accepted the autism label.

And what are these struggles?

They are the very things I fought against for so many years.  They are the thinks I wanted a solution for.

I wanted a cure then.

Now they are named.

And I know there is no cure.

But sometimes.  Some days.  When things are bad and I know I have the rest of my life to experience it all.

On those days.

I WANT A CURE.

Why should I not want a cure?  I wanted one before I had an explanation.  Why shouldn't I still want one?

It's irrelevant in a way.  There is no cure.  Being autistic is a part of my identity and it always will be.  There is good in that.  There is.  And I happily wear my autistic pride badges and bracelet and often a necklace that just says "Autistic".   I recognise that autism gives me gifts as well as hardships.

I am proud of me.  And I am proud of all the other autistic people who struggle every day, and all the autistic people for whom autism is far more debilitating than it is for me - for the ones who will need twenty-four hour care every day until they die.

I am proud of them all.  Because autism is fucking difficult.  For me it is that difficult every day.  Every day.

And on some of them.  If I am honest.  As I am being publicly honest right now:

I WANT A CURE.  A fucking cure so I don't have to endure what I endure.  Yes, one that would leave my personality intact - which would probably be an impossibility.

I say that knowing that it's not a popular view.  We're all meant to be proud.  We're all meant to be autism positive.  We're all meant to cultivate our autistic space, autistic identity, autistic culture, to fight for acceptance not just awareness, for accommodations to help us, to say that we're autistic and we're bloody wonderful.

Yeah.  I can do all that.  And I will keep doing all that.  Because, as the saying goes, we are different but not less.  I believe that.  Firmly.  Without hesitation.

And yet.

On some days.  I want a cure.

There.  I've said it.  The unpopular thing.



[1611 words - far more serious ones than the 2700 written earlier for Blob Thing's blog.  Read those words for light relief.]

Sensory Overload - An Autistic Hell Day And A Difficult Recovery

Yes.  Yet another autism post.

This was written long hand in pen at six o'clock this morning.  I have thought hard about whether to type it up and share it, without any editing because of the nature of that writing.  OK, so I admit one edit because the original was just planted onto the page in one long paragraph so I've separated things out to make it more readable.  This writing is part of a course I'm starting on unlocking creativity, a course that will be wonderful.  But the pages of writing every morning - yes, EVERY morning there's this amount of writing, in pen, on paper - aren't really meant to be shared.  Today I am breaking that rule.  Because this may explain part of my life to people who can't see it because it's not visible.  Here I share a little of what sensory overload can mean to me.  The effects of doing something I wanted to do - and to be able to do.  It is very nice to be able to admit to all this and to be honest with myself and others.  It is horrendous that my unconscious coping techniques and defences took a running leap off the nearest cliff when I started to examine them and bring them to light.  Right now, things are fucking difficult.  I'd say "Excuse my language," but really, don't.  I can't be British and polite and stiff upper lip about this without being dishonest about the whole thing.  And if I'm dishonest about it then what really is the point of me talking about it at all.  Here goes:

____________________________

There are moments when I wish autism could go and take a flying fuck out of my life. Last night. And this morning. Moments when it would be nice to be able to do normal things, the simple things that normal people do, without it turning into a living hell, without having to retreat and recover until hell subsides.

Yesterday I spent time with people. Unexpected people. For maybe 45 minutes in a noisy bar. Thankfully not the first bar we entered which was too much for me in seconds. I try to act normal for the randomly met people. But it's so hard when everything else is happening, when every second is an inner pain and every moment an overload of sensory input. I try so hard but it is hell. And I just don't know the social rules. Didn't really know how to function and that would have been the case even if we have all been on a deserted mountain with only the sound of the breeze through the rocks and the heather to keep us company.

Perhaps I should have said no, and not done it. But damn this. I want to be able to function in a reasonably normal way. I know I wasn't. I know I was finding communication tough. Drifting into a mode where every word is forced and where being non-verbal is the option I want to take. It was nice to be with a very verbal person so I didn't feel an excess of pressure to talk, just guilt for not talking enough and drifting into stimming with the sleeves of my top in order to stay relatively centred.

Yes. I want to be with people. But I need to learn to say no. To be totally honest and say “I am autistic. I choose not to do this because it is harmful to me.” “I am autistic, and while this may be normal life for you, it is misery for me.” For my own well being I need to learn this.

Because it wasn't just that the situation hurt all the time. It continues. The bar is left behind. The noise, in the past. The people left. But that's not the end of it. My hell does not end the moment the situation ends. It takes me time to recover.

Last night was a quest to recover. Yes, there were good things. K's enthusiasm over stones. The blessing of a double rainbow. Writing to a friend. But the evening was recovery, still feeling the physical pain of sensory overload. Still in a state of shock, in a state where the terror and craziness and over-whelming chaos of that bar stayed with me. Every second, no matter how distracted, was a continuation of my pain. Just as a tuning fork takes time for the note to fade.

And last night I didn't see any sign of the note fading. I was in tears more than once because I still hurt so much. And because I know that there is nobody who can really help. Nothing I know that helps. As such times there is always the temptation to self harm because I know that would instantly relieve much of the stress, anxiety that can accompany the effects of overload. But self harm is out. I refuse it and don't ever want to walk down that path again.

Yes. There were good things last night and I hold onto those. But they were fleeting flowers in the fire.

I am fortunate to be taking medication. Because it does make falling asleep easy, no matter what state my head is in. The drug takes me gently away rather than it taking hours to sleep, until total exhaustion means sleep comes. Without that drug, last night would have been worse, have gone on for far longer and the pain would have been with me at every second of it.

So what of this morning? Am I recovered? Simple answer: No. I am not.

I do feel better than last night but the noise and the difficulties of the social area still with me. The noise is still humming through my head. Repeatedly the sounds clamour for my attention even though they ceased to exist in the existence of my outer world, fourteen hours ago. In my inner world they remain, in full surround sound. So glad we were near a window. It means that if I focus to the left of my brain it is a lot quieter.

No. I am not recovered. And I hate that. Fourteen hours and I am not recovered from doing a perfectly ordinary things that perfectly ordinary people do. Fourteen hours and my non-recovery makes me want to cry again for this shitty, shitty life. No. It's not shitty. This is only one side of it. There are many good things and my life is better than I'd ever thought it could be.

But to wake up still wounded from something so simple is scary. It's distressing. It's a picture of how limited I still am. And of how limited I might always be. And I have no been able to accept these limitations. I try not to punish myself for them but that's difficult. And I try not to get frustrated knowing there are normal things I can't do.

Get this through your head Clare: You are disabled. Deal with it. Accept it. And seek a life that sets you free in it.

Waking up like this isdistressing. When pain continues so long after the cause has ceased to exist. Irrationality rises up and says, “Snap out of it. It's just in your head.” Yes, of course it's just in my head. But that doesn't mean it isn't real.

I am so glad to have accepted this autism label – because at least it explains my reality. At least it tells me I'm not just a useless nutter at these times.

So today. I must continue to recover. And then go to church and be the social animal again, the smiling face welcoming everyone, the friend to everyone there. I so much want to be there, with my family who are the church. And I hope to recover enough by then so that I can be back in that quiet place beforehand.

Today is the day when I must start to learn to say no. To not worry if that makes me look selfish or anti-social. Today is the day when I must start to put my own self-care first so that I can care for others from there and not fail to care from my own hell.

I am autistic. It's time to say it. To BE autistic and explain that when I know something will do me harm. Today. Say No. Because the reason is sound.

Autism and Sensory Processing: When Even the Quiet is Overwhelming

Something written about an experience of today.
Written as it flowed.
Unedited.  Not proof read.
It's honest.  It could be nothing else.
But it's by no means some polished jewel.
Right now, this is my life, or at least a part of it.
And it hurts.
And again, I do not know how to deal with it.
And again, I will begin to learn.
All will be well.
It's just not well now.

___________________________________________________

I never used to have this problem.

Not like this.

OK, I knew that it existed.

But I'd learned long ago to live with it, to work round it,

To cushion my head against the blows.

Now I cannot escape this problem.

I admitted my autism

And never expected any of this to happen.

I knew there was something.  I always knew.

But this whole thing has taken me by surprise.

Something within decided to show me a series of revelations:

"Here's what you are really like.

Underneath the forty year development of defences, strategies.

Underneath all your learning to focus.

Beyond the skills you learned in tunnel vision, tunnel hearing, tunnel senses.

Here, here, here is what you really are.

Here is the truth."


There was no escape today.

I have lost those skills.  All my learning wiped away.

Without those ways to cope, this is now my life:


The streets were paved with Hell.

So I sought out the sanctuary of a library.

The peace, the near silence of a library.

The only way I could see to cope with that Hell until I was called into life again.

Not so.  No.  Things were too bad for that.

The library.  Too noisy for me.

With quiet noises coming.

Many noises.  All around.  Unpredictable.

Music.  Two sets of music.  Driven to the heart of my head.

Voices, so many voices in so many places, in quiet conversation.

The clicking of computer keyboards.

The intense sound of a soft broom on the floor.

Sudden things being dropped.  Scaring.

Each suddenness a new instinctive threat to be considered.

Footsteps on the stairs.

The overpowering machinery of the lift.

The sound of the building, breathing in air conditioned cool.

So much noise.

So much more than that.

All of it quiet without.

But each sound appearing as an explosion within.

And so much movement.

And so much light.

So much pain.  So much heat inside.


The approach of a kindly man who asked if I was OK

Far kinder than the man who laughed in my transgender face this morning.

Or the two guys laughing and insulting me in the street.

Not that I cared about them.

I am too sure of myself right now to give a shit

When the idiots and ignorant try to rubbish me with abuse.

The kindly man wanted to stay, to chat

Because he heard me say I was artistic.


Until he walked away, with speed and determination

When he realised I was not artistic but autistic.


With all my old defences I would have hardly noticed it.

And that man would have hardly noticed me.

But now.  Undefended.  Naked.

The confusing quiet of library became unbearable.

Every sound, every suddenness a new scream within.

Back to the noise and movement of the more predictable streets.

And home.  Fast.  Weeping on the Metro.


Weeping.  Because I could not escape the feeling that I have failed today.