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.]

Six Months Ago - Positives, Gratitude, Hard Days and Craziness

I've been looking back at old Facebook posts this morning.  And there are things that I'd completely forgotten about.  Six months ago someone inspired me to write five positive things a day for five days.  I ended up writing them for ten days - the days immediately before Autscape, which was itself filled with positives.

The days contained so much good.  And so much bad.  Unless good and bad are just labels we apply to things and not a reality in themselves.  I've added in a few of the photos taken in the good of the days.

Six months ago I was into some quite crazy stuff.  And then I pulled away from it because of my mental health and because living in the security of habitual living was easier than living in the possibilities of craziness.  I think now I am returning to the crazy and this time I might be ready to lay aside the habits.  Time will tell. 

Six months ago today was day three of the positives.  Yes.  Six months ago today I helped plan and then officiated at a pagan dog funeral.  That was such a strange and happy day.  I need more of them.

OK. Someone inspired me. So here goes:

Day 1 of 5 positives.

1. Spending the evening in a healing environment with some rather wonderful people.
2. Eating too much of the chocolate banana bread that Beth cooked.
3. The words received in meditation tonight.
4. Learning that there is a mantra/prayer with the gorgeous name Ho’oponopono.
5. The unlikelihood of having met the person who inspired me and the way Spirit arranges these things.

Very little sleep. Haven't been able to go to the sacred drumming and have spent time collapsed on bed crying my eyes out because the sensory crap is just so damn painful today. All out of spoons today. So this is going to be a challenge:

Day 2 of 5 positives.

1. The friends I've met in the last two years.
2. The books I'm sharing this bed with.
3. The partial relief gained by sticking in Alpine MusicSafePro earplugs.
4. An unexpected decision made about placing tattoos on my wrists.
5. It's been hard work getting to number five but this is just a bad day, not depression and not despair. This - on bed, alone, only semi-functional, with earplugs - is so much better than things used to be when writing lists of positives every day as part of a self-harm support group and some days sitting for an hour and struggling to come up with a list of one. Of course there are many other positives - the roof over my head, having Beth and Kit, abundant water from the tap, the sunlight, and so much more.

Here goes. Far later than planned.

Day 3 of 5 positives. Ooh, they're positive today.

1. Helping to write and then co-officiating at a pagan funeral for a dog owned by some people I've never met before. I kid you not!
2. Spending so much time outside in quiet places and getting mildly sun burned arms.
3. Lying, deeply relaxed and content, in the grass on the route of an old railway while H sang Wiccan and Sufi chants to me.
4. Sticky toffee pudding and cream in the house of strangers and gluten free steak pie in the house of a friend.
5. The sheer unexpectedness of the day and the joy and laughter shared, even on the day of a funeral and that this list could extend a long way today. On days like these it is so easy to so much love my life and how different much of it is to how it used to be. 

Positives. Day 4 of (unspecified number)

1. The completely unhealthy indulgence of eccles cakes covered in left over clotted cream from last night.
2. Being so massively touched by part of "The Dying of the Light" (the last Skulduggery Pleasant book) even if I may be emotionally scarred for life by the trauma caused by what happened!
3. Giggling repeatedly at just how unexpected yesterday was and how different life is than I could have ever planned.
4. The deep love I have for certain of my friends and the joy that knowing they exist brings to me.
5. Spirituality is becoming light-filled and joy for me rather than an excuse to continue to chastise myself and live with guilt or shame.

Positives. Day 5 of however many, written while unreasonably stressed about a missing phone.

1. Buying a nice Celtic knotwork ring in Tynemouth for 50p.
2. Sitting out on rocks near Tynemouth, proving that it's possible to be completely alone at a tourist seaside place in August, chanting and praying and generally getting on with nature.
3. Being lent some books. Obviously someone thinks I don't have enough to read already!
4. A surprise phone call when I got to Whitley Bay resulting in a total change of plans and time spent with a friend by a river (which may now be home to my phone).
5. The feeling of tiredness having walked from Tynemouth to St. Mary's lighthouse before going for a walk.

Positives day 6 of 5

1. Church tonight and completely losing it in giggling fit during the service. Pub after church with friends.
2. The friend whose photo is on the facebook wall immediately under the box I'm typing this in. Love you.
3. I have my phone back and the hug from the friend who returned it was a wonderful hug. Love her hugs.
4. A happy afternoon with another friend, sitting in the deliciousness of Tea Sutra and wandering being a tad insane with her before meeting the friend mentioned in 2.
5. BUS PASS! Wow, so excited. Impatient too because it can't happen yet. But I learn it will be able to happen. Bus Pass. Bus Pass. Wow. Wow. Wow. Hallelujah. Now wondering if another friend knows about this.
6. The number of friends mentioned in those positives. And now I'm home and my family are here. As is another friend.
7. Blimey, when did life start to get good?

Positives: Day 7 of 9. Minor geek edition.

1. Sense8 got renewed for a second season. We walk with pride!
2. Beth says she's going to buy me a Leeloo multipass toy.
3. Person of Interest season 4 awaits me.
4. Skulduggery Pleasant. All of the series. All of it. And that the three of us are going to the Derek Landy talk and signing in a couple of weeks.
5. The hope that Star Wars episode 7 will adequately compensate for episodes 1 to 3. I can live in hope, even if it's unrealistic.

That's enough of that because there has been good on this quiet day. Being outside early this morning. Getting important financial things done and only having to pretend to be my aunt twice in order to get them done. So many good things to be thankful for. And things most of us take for granted - like automatic washing machines. 

Crappy head day. When the social and sensory is massively draining before it even begins. Nyah. Nyah. (But not Nyan. Cat. Not that cat.) But. Here goes.

Positives: Day 8 of 10

1. Daniel Barenboim is playing piano for some Beethoven with the West-Eastern Divan Orchestra. 'Tis stunning. Love Beethoven. Love Barenboim.
2. Spending time with a friend. Long text conversation with another friend. Friends. And that there are very special ones. The ones with whom the connection runs so much deeper for me than family.
3. Tea in Tea Sutra. Of a variety that the staff pretend to be able to pronounce but they never pronounce it the same way.
4. The name of Valkyrie Cain. And that I'm getting closer to working out my own name. But not my true name. Wouldn't want that of course. At least 4 friends will know what that means!
5. The book Everyday Meditation by Tobin Blake. Among the best £1.50s I've ever spent in a charity shop. So glad to have come back to it, each day with it is a pleasure.

Brain fog, foggy, foggety, fogged.

But the lights that unexpectedly penetrate fog can be incredibly beautiful.
So the plan is to enjoy the lights when they appear rather than spending all the time shivering in the dark and chill of the inner fogginess.
And then the wind will blow and the fog will clear and the greater light will warm and heal.
Blessed be.

Get 'em in early today. Positives: Day 9 of 10.

1. All the overload symptoms earlier were complete horrible (swear words) crud to cope with. But they don't last forever and concerted self care means crisis level has been reduced to "Danger, Will Robinson" level and that feels SO much better. Things DO get better.
1b. Ear plugs. Silence. Closing the door of the room.
2. The jar of lemon curd I bought in Scots Gap last week.
3. Only 117 pages left of the last Skulduggery Pleasant book so I can finish it before going away.
4. Today's sunshine and warmth.
5. The anticipation of the Autscape conference this weekend and the talk and book signing in ten days time. Anticipation can be a wonderful thing.

Positives: Day 10 of 10 It's the final count up.

1. The day improved greatly. Felt so rubbish this morning and everything was still too loud and cried quite a few times. It's much better now.
2. Walking this afternoon with a friend at Shafto and at Bolam Lake.
3. The carrot and coriander soup that friend bought me from somewhere.
4. This: https://www.youtube.com/watch?v=L9R3IchTZBENine days until we go and get the (signed) book.
5. My counsellor/guide from White Lodge when I was sixteen, who has just published some wise and relevant words.
6. That this is the final day of these positives because tomorrow I leave for the Autscape conference and that's exciting. And it's the unknown too so that's a bit daunting. 

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.