The Grateful Autistic

The thoughts of a reborn woman.

Experiences of being proud to be AUTISTIC and TRANSGENDER while losing my religious faith and discovering spiritual freedom.

Words of love and gratitude and life in the wonderful city of Newcastle Upon Tyne.

Thursday, 25 August 2016

Days of Gratitude - Autscape, Friendship, And Finding Freedom In A Cemetery

I am posting this on August 25th.  Today would have been my mother's 72nd birthday.  She died a few days after reaching her 70th birthday.  Facebook keeps giving me memories to share each day and most of them have been status updates about the events leading up to my mother's death.  Every day I am given the option to share some painful circumstance.  I haven't been sharing.

The morning after my mother died I had to return from Sussex to Newcastle, leaving my brother to deal with everything for a while.  On returning to Newcastle I attended the appointment at which I was officially diagnosed as being transgender.  It's tempting to wish that my mother had lived to see that day and the two years that have passed since then.  But no amount of wishing would make it a reality.  After that appointment I returned to Sussex.  I wrote the address for my mother's funeral and reading it was a privilege - and quite a challenge to not fall apart at certain points in it.  I posted the address in a post on this blog and it also appears here, the final ever post on my mother's blog which she lovingly wrote nearly every day for quite a few years and filled with family and friends and many photos.

That all happened two years ago.  This is now.  And these are five days of memories for this month, to add to the memories Facebook keeps on recommending I share with the world again.

18th August

Grateful for Autscape. A lot could be said about that.

Grateful though to spend much of the afternoon not at Autscape!

Amanda and I walked into Settle, relaxed together, ate ice cream and then walked a little by the river.

We found a great rock to sit on in the middle of the river and I even had a free thirty seconds for stone stacking, reminding me that I want to take myself off for a quiet day doing it.

19th August

There is much I will miss. Much to think about too.

But I am grateful that tonight I will sleep in my bed.

Farewell Autscape for another year. Tomorrow I have to attempt to think about food again.

Grateful too that this time round only a week will go by before I see Amanda again - for a Christian festival!

20th August

Being looked after when arriving at the meditation group in a state. Sitting alone in silence helped and then good people and lunch.

Grateful for the people who set up that group and for the way the enterprise will be expanding very soon. There will be a meditation centre in the city centre and there are great plans for the future.
Also grateful to look out of the window.

21st August

Grateful for missing the bus home after the Sunday Assembly social and going a different route back to the Metro that turned out to be interesting even though totally an incorrect route.

This led on to becoming sidetracked in a cemetery I have been meaning to visit almost since we moved here.

Also very grateful that a year ago today I met a very wonderful woman. I couldn't be more grateful than I am.

22nd August

Grateful that one year ago tonight I danced, played and sang barefoot in a big thunderstorm.

She had encouraged me to do so. She didn't accept my refusal.

A year on and we have a most marvellous and undefined relationship centred on a stunning magic friendship.

Wednesday, 24 August 2016

A Little More About Autistic Pride And The Sometimes-Desire To Be Cured

I am mainly posting this so that I don't lose it.  I posted this a while ago in a Facebook group that celebrates and embraces neurodiversity.  I've made a couple of changes to post it here, but it's sustantially what I posted on Facebook.
I'll just make clear.  Autism is part of the neurology of autistic people.  It isn't a thing to be cured.  It's a complex beast - and isn't really a single beast at all.  It is something that contributes to making me the person I am, and that's not a bad thing.  I guess I'm not alone in the feelings I express.  I guess most people with a disability of whatever kind will have had days when they just want it taken away from them.  They may fully accept themselves but still, when passing through fire it's hard to say "Hoorah, I am being burned!"  I accept myself more than I have ever done before.  I do.  As a result I am happier and more content than I have ever been before.  But:

Self-acceptance is compatible with wishing for change.

The Facebook post:
Please read this before clicking the link at the bottom. It contains explanation and a couple of warnings about what I've written in the post the link leads to.

I posted one of my recent blog posts in a group subtitled. "We have our own views too! Autistics speaking for OURSELVES!" I posted it as an autistic person, speaking for herself, an autistic person who at times would love for it all to be taken away.

It was accepted by a moderator and appeared. Then it vanished again within five minutes, deleted by another moderator presumably. I guess that in that group only some view from autistic people are allowed. I guess that autistics are only allowed to speak for themselves if they have a particular opinion.

Otherwise they aren't allowed to speak up. The question was raised by a speaker at Autscape as to whether the autistic community is truly inclusive of all autistic people. Do we really accept ALL autistic people even if they're difficult, no matter how disabled they are, or if (shock!) they dare to have different beliefs, frustrations and worldviews to our own?  A good question, posed by someone who has been a very active part of "the autistic community" for twenty years.  He knows his onions!

On the basis of my experience today I have to say that it can be exclusive and we can cast autistic people into the outer darkness when they don't fit a narrow view of acceptability.

I'm going to share my post here. I know that most will disagree with it. I know it's not a popular view. But that's okay. I expect comments. I expect discussion. I expect both appreciation and distaste. That's fine. It may even be deleted by moderators who feel it's not the kind of thing they want an autistic person to be saying in their group. That is their privilege.

Warning: This post does talk of cures. Of the times when things deteriorate for me so much that quite frankly a cure would be a lovely thing.

Warning two: I do swear in this post. I try not to swear much but I was free writing everything and strong feelings were arising and some language fell out that isn't for sensitive ears.

But of course I'm proud too, and positive and know that a cure is an impossibility and that being autistic is a part of my identity, my human personhood. Sometimes I can celebrate that. Embrace the whole of what it means to be me. I wear an autistic pride badge and an autistic pride bracelet pretty much every day. Because I am proud.

But on the bad days, honesty compels me to say that I would prefer it if all those disabling things could be taken away just as much as I did before I had the word "autism" to help me understand me. On some days, to say it's "a different way of being" or to say "I'm differently abled not disabled" just doesn't do justice to how much of a struggle it is. I am disabled. I am. Yeah, I am different not less. We all are. And I've blogged about that in the past. But sometimes the difference feels overwhelmingly dreadful. And oftentimes it is disabling and no amount of accommodations would ever mean that it isn't.

So that's me. Being honest.
My previous post:

Extra to the Facebook post:

A link to the talk at Autscape, by Martijn Dekker, with a link there to all the slides shown during the talk:

Head to the homepage there to find out more about Autscape.  It's the only event of its kind in Europe and I am completely thankful that I was told about it in time to get there last year for the first time.  Next year it will take place at a different venue.  There won't be all the gorgeous scenery we've experienced for the last couple of years when it was held in Giggleswick, near Settle, North Yorkshire.  I'll be blogging some pictures of the area eventually.
Next year it is, I understand, taking place in Northampton.  So I won't be able to escape for a couple of hours by going up a hill.  But I will be able to escape by popping into the centre of a town where I used to live and seeing whether it has changed at all.  I may even take a picture of the plaque that commemorates the school for dissenting ministers run by Philip Doddridge - some of whose words appear in the pages of The Sacred Harp.  Maybe next year I could do a lightning talk about shape note singing.  No.  That's not quite right:  Definitely I could.  But maybe I would!  Because everybody should know about shape note even though many of them will learn that it's something they strongly dislike.

Days of Gratitude - Art And Autscape And Sparklies In The Dark

Five more days of gratitude.

The first of them really did go wrong.  I had good plans - to go and sing shape note music in a chapel at Beamish Museum.  Due to a miscommunication they didn't come to fruition and I was left at home with a packed bag for the day.  I could have stayed at home.  But decided that they would be another plan.  So I went out and let the plan develop as it happened.  The replacement plan didn't go to plan either in many ways.  But I was still able to have a really good day and visited somewhere I've never been to before.  The art looks great on the walls of this room I'm sitting in.  The cheap art.  Very cheap.  The total cost of the five pictures was £4.50.  I'm actually quite proud of finding the bargains.

The five days ended at Autscape, the conference/gathering of autistic people that runs each year.  I must point out at this point that the friend mentioned who couldn't get to Autscape was not a Dalek.

13th August

Today's plan went completely wrong. An excuse for inventing another plan.

I walked on Hadrian's Wall.

I sat by a river.

And I bought cheap pictures.

14th August

Tynemouth Market
Grateful for a poetry book and a few pretty stones from Tynemouth followed by a short wander.

The gateway to Tynemouth Priory.  We didn't go inside.

I was too tired to actually walk by the sea as planned.  But that didn't matter.  Seeing the river was good and those two obviously enjoyed it.

15th August

A half cheat.

Grateful for socks. Grateful that in the last year I have stopped wearing black socks every day and now wear all sorts of colours. And sometimes giraffes.

 Grateful (and this is the cheat half) that within the next 24 hours (tomorrow) I will be at Autscape for a few days of autistic space, something that is a very rare thing in an allistic majority world. Last year's Autscape changed things for me in unforeseen ways.

16th August

We are at Autscape.

This year I know some people already, have child with me, and a friend from Newcastle.

Two pictures from the day.  The first was taken at the informal badge decorating.  The second was taken at Sparklies.  Photo credit to @quarridors

Check out this Vine video of what the lights look like through my heart glasses.  Through my difraction glasses they look even more crazy.

17th August

Grateful to be at Autscape.

Maybe most grateful for the hours spent NOT at Autscape.

Amanda and I went to spend a couple of hours in Settle with a friend who couldn't make Autscape this time.

 And then we paddled in the river.

Tuesday, 23 August 2016

Days Of Gratitude - Treating Winefride. Taking The Ferry But Not To The Baltic

Readers of this blog will be unsurprised by the next sentence.

I am behind with my blog.

Here are four more days of gratitude.  Were they really less than a fortnight ago?

9th August

Grateful that people seem to like the most recent blog posts by Blob and the one I accidentally wrote about biphobia this morning.

Grateful to have been able to take Blob Thing and Winefride on an adventure. She wanted to go on the ferry too. Who am I to deny her request?

Winefride poses with a giant lion.

He was very friendly.

Blob and Winefride enjoying themselves.

 Grateful that I just about kept my brain functioning when out. Just. About.

Grateful that nobody has yet locked me up in a psychiatric ward for the way I talk about, to, and as Blob Thing!

10th August

Grateful for charity shop books of a kind that would almost have been an instant eternal hell sentence for the good reasonably fundy I once was. Almost.

Grateful, not for the first time, for free tea and cake at John Lewis, and for finding a way out of that shop that doesn't involve heading back into the rest of the shopping mall. Woo hoo!

Another grateful. I just thought of it.

Six months ago today it was Ash Wednesday. The first day of my official Lenten fasting from church.

Very grateful to have been able somehow to take that step. Six months into my six week fast I have no regrets about starting to learn what life without regular church attending might look and feel like.

11th August

Grateful to have gone out with wife and child today. A rare family outing. We didn't do the planned activity but found things.

Grateful too that I am quite pleased with Blob's post today ( I think) even though it entirely didn't go to plan.

Going for the obscure pictures today! 

12th August

Grateful to have got into town long enough to gain a shorter fringe, or to lose a longer fringe.

Also grateful to start writing something in the cathedral cafe. On paper rather than on the walls. And to continue for a while at home.

Grateful to have had just enough spoons to be out for these things, to find two things to snap a picture of, and to buy this hippo.

Monday, 22 August 2016

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.



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!


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.


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.


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.]