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.]


  1. Very well stated! The struggles that Autism presents do make it a disability, in that they can be incapacitating at times and always present in our social world. The sensory, social and anxiety issues are intertwined and stress the nervous system, leaving it vulnerable to any snag or daily pressures. Their are some strengths that autism can present, but the challenges are ongoing and deliberating. There is no covering that up, only learning to compensate it. Well spoken, interesting read.

    1. NO I'm sorry I don't think that learning to compensate it is such a good idea as that for me is part of the daily struggle I don't want a cure just for others to be more enpthetic and understanding and not see autism as an illness it just isn't


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