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:

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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 is distressing. 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.

Being Transgender: A Sudden Decision? No. Of Course Not.

I entered into a facebook discussion again just now having been asked to weigh in and be the person to answer all the questions that can be asked about transgender issues.  Again.  Maybe I should just write a book about it and then when the same questions get asked again and again and again I can just say "Buy my book, the answer is on page 82."

My plan was just to say that I'm not up to answering questions.  Instead I was forced to correct a mistake that had been the basis of much of the conversation up to that point - the quite common belief that the word "woman" is derived from "womb."

The discussion, as too many are right now, revolved around Caitlyn Jenner and whether she could possibly claim to be a woman.  (She can.  Case closed!)  And the accusation emerged that her decision to transition was of a man suddenly deciding to be a woman.  (There's no sudden.  Case closed!)

My plan tonight was to write something about myself.  Because it was two years ago tonight that I stood in front of my mirror and everything that I'd been hiding from for so long, in terms of gender, could not be hidden from any longer.  Two years ago tonight I said hello to myself as Clare - a name I already knew - and welcomed myself into freedom.  Two years on and I have not regretted it for a moment.  The last two years have had lots of difficulties, as those close to me know well.  But my life is vastly better now than it was then.  Once you learn to love and accept yourself it changes everything, no matter what happens in your outward circumstances.  My only regret is the same one that so many transgender people have - that we didn't do it all a lot sooner.

Instead of that writing, there's this.  A single response on facebook.  Much longer than planned because it gives so many reasons why this "sudden" decision is delayed by so many transgender people.  And in some countries and societies there are far more reasons for delay than here.  Sometimes good reasons why someone will never be openly transgender at all - such as wanting to stay out of prison or wanting to stay alive.

Apologies for the bluntness in this.  Actually I don't apologise.  That's a lie.  But if you are offended by swearing, don't read this - there are a few naughty words arising from feeling very strongly about these things, feelings that come from my own experiences and the experiences I've heard of in the lives of friends or seen in the lives of others who I do not personally know.  Some people have experienced far, far worse than me.  Compared to many, I've really had the whole experience of transitioning very easy.  But compared to NOT being transgender, it's been bloody hard.

No need to read on.  Of course, there's no need to have read this far either, but thank you. I'm mainly blogging this so I can look back on it myself and remind myself, not that I'll ever need reminding, of all the reasons why there's nothing sudden about the choice to come out and live as the person you are rather than the person you were told you had to be.  The following was just typed straight out and has not been edited in the slightest for posting here.

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The word "woman" is not derived from womb. Not sure where that erroneous idea came from, but: http://www.etymonline.com/index.php?term=woman There's loads online about the etymology of the word.

In any case, there are medical conditions in which cisgender women are born without wombs. Is anyone here accusing those women of not being women? Is anyone here going to define a person's gender by their genitals or their reproductive organs, rather than by the actual person? Is anyone here going to reduce such questions to body parts? Is anyone here going to say that those women cannot be women because there were born without something "fundamental" to being a woman? I sincerely hope not.

I am the friend in question but I'm really not up to answering all the questions at the moment because so much is going on right now that's taking pretty much all of my energy. There's so much good information online. So anyone who wants to learn can learn, from loads of transgender people who have written a ton of good stuff about their experiences. Just google it. Take time to research it and read just what transgender people have gone through in order to be able to live as the people they are.

But here's a rant I accidentally typed:

Just to say, it's not sudden. By no means sudden. This has always been with me in some way but I couldn't face it, face myself and accept myself until two years ago. Because from earliest childhood society told me that I couldn't be me, that such thoughts were evil, even that I am an abomination. With such crap thrown at you through childhood and adult life it's hard to accept yourself. And when you know that shit will be thrown at you when you do deal with it, by idiots, by the ignorant and by bigots, it's hard to act on that acceptance. And when you start to deal with it and get rejected by friends and family and when every time you leave the house you are abused by people then it's fucking hard to continue. And when you haven't got the privileges and riches of Caitlyn Jenner and the cash to pay for everything she's done then it's even harder. When private health care isn't an option it's difficult. When national media insults you. When hatred is thrown at you for even daring to live as the person you are then life can be more than a bit difficult. Overcoming all the crud that's been thrown at you for decades when you have done your very best to deny who you are because of who society thought you should be when you were born is never easy. Never. When people fear you. When news agencies and politicians try to get other people to fear you and think that you're only doing it because you're some kind of sexual predator who wants to assault and rape women in a toilet. When you are at far greater risk of being beaten up, and in many countries murdered. When obstacles are put in your way or it's made impossible to be legally recognised as your own gender. When in many countries even trying to be yourself would result in a prison sentence. When you see transgender friends assaulted. When you are sexually assaulted in a transphobic attack (which happened to me). When churches reject you. When they throw you out of ministry. When they seek legal help to try to make it impossible for you to even enter the building. When ministers try to exorcise the devil from you for daring to openly be who you've always been inside. When you are told you are damned to burn for eternity for being transgender. When friends turn from you and family members won't even speak to you at your own mother's funeral (which happened to me). When all these things happen it's just fucking hard to even consider coming out and saying "Yes, I am transgender. Yes, I am going to live as myself rather than as a shadow, a wraith. Yes, I am going to accept myself and love myself". So difficult.

So no. It's not sudden. It's not sudden at all. It's just very, very difficult because of all the crap that gets thrown at us and which makes us feel worthless until we find that immense courage needed to turn round and live as the people we already know we are.

To accept myself is a decision I made two years ago. In my early forties. Two years ago tonight. A decision which pretty much instantly ended a period of thirty years of constant depression.

Dreamscape. When Dream Lingers into the Waking. And Calls Unto Renewed Death.

An hour after waking:

I hate that dream.

I hate that house.

It's not happened for a while in any of its variations.

Tonight was the worst, not necessarily for the events but for the place.  Other dreams have far worse events.

Dream events are nothing compared to this place.

This place is entirely the essence wrongness.  I have no better word.

Every wall, passage, room, staircase is wrong.  Physically the walls look just as walls, ancient wood.  But psychically they exude the stench of something far beyond simple death.

The fabric far beyond darkness.

The wood, the walls, the house itself is hard to survive inside my own being.

And it has HIM in it.  Whoever he is or represents.  HIM.

There is no light in HIM, none.  None.  Just venom, hatred.

Somewhere in that house, he will be.  Always writing, whatever HIM writes.

Tonight he saw me and moved with more resolution and speed than I've seen before.

Urgency.  Urgency.  Desperate to come to me.  To steal all light from me.

He is fear.  That place is fear.

The whole place is twisted by Presence, vile presence, manifesting whatever it wants and able to exclude Spirit-Source from the house, able to transform calls to Spirit and fight back, increasing the wrongness and the manifestation.

But worst of all is HIM.

I feel HIM now.

I see him grasping for me because this dream takes too long to fade.

If I must go to a dream house, can't I go to the other one?  Yes, there's a door there that passes through to an Elsewhere that isn't right.  And I can't not go to it.  But that Elsewhere feels like Hell has passed away and the place just needs to be brought to life.  Tainted but not threat in any major way.

Tonight's house, ancient wood, is entire threat, entire psychic danger, sometimes physical danger.  And tonight's house remains into the waking and calls for me to return.  Return and have the hope of Spirit, of the creative, of Being, ripped from your being.  HE can do it.  There is no Spirit there to stop him.

And I see him now because whatever HE is, that is still within me.

Mother of being, protect me.
Father of light, protect me.

Because that place, that HIM, are within and they want to return me to my death.

Inside.  That place is real.  And it wants me to return. To stay.  In waking and sleeping.  To stay.

If dream is manifest psyche then inside me, that place is real, HIM is real.

And he must one day, in my waking, be addressed and fought.

Mother of being, guide me.
Father of light, guide me.

Different ... But Not Less: Autism, Temple Grandin, GPs, Ignorance and Celebratory Pride

"Different ... but not less."

Never less.  That goes for all autistic people no matter how supposedly "high" or "low" functioning we are.

And it goes for ALL disabled people.

No disabled person should be thought of as less, demeaned as a lesser human being.  No matter how severe the disability.

And it goes for all genders, sexes, sexualities, colours, nationalities as well.  It goes for all groups of people who have had to fight, and often still need to fight to be treated equally.

"Different ... but not less." 

This tiny quotation comes from the closing speech in a TV movie about Temple Grandin PhD, starring Clare Danes.  I haven't seen the movie - does anyone have a spare DVD?!  This three minute video contains that speech.  It would be nice to think that approaches to autism have come a long way since the 1981 conference where the impromptu speech was made.

https://www.youtube.com/watch?v=YeWks6cgJ-k

If you want some extra entertainment try watching the clip while reading along with the English transcript youtube helpfully provides.  The software isn't quite perfect yet.  But as always, don't read the comments.  They include such things as "Can autistic women have sex?"  With the answer, "Dude, autistic people cannot have sex, they don't know anything."  All rather depressing that people think such things.

I happened to have a book by Temple Grandin in my bag when a GP said during a consultation, "How can you even think about autism when you can speak and are intelligent?"  That made it easy to respond with, "Hey, GP, look at this science book by an autistic lecturer with a doctorate.  GP, your views on autism are entirely wrong."  I find most people are amazed by that GP - surely everyone knows that there are plenty of very intelligent autistic people.  Everyone apart from that GP.

There is so much to know about the human condition that sometimes GPs don't know things.  The best GPs are the ones who admit that they don't know - and who find out what they don't know so that they can be of use.  The worst GPs are the ones who pretend they know everything.  Fortunately at least a couple of GPs here are open about it when there's gaps in their knowledge.

A GP my whole family likes fully admitted she didn't know about the referral process for adult assessment.  "But," she said, "I will find out and I will refer you and if there's any problem then I will contact you personally."

And the good GPs here are fully open that they don't know the ins and outs of the medical side of my gender transition.  But that's fine.  They are happy to follow instructions from the gender clinic.  And to a large extent they are happy just to follow my instructions, trusting me to know far more about it than they do.

Yes.  GPs do not know all there is to know about medicine.  That would be impossible.  But that's fine.  We cannot expect them to know all the answers.  Not knowing is acceptable, as long as they don't pretend to know everything and in doing so say ignorant things and mistreat their patients just as that GP said to us.

That's a lesson for us all.  We're all ignorant about things.  Let's accept that and be humble about our own lack of knowledge.  Let's all refuse to speak in ignorance as if we were the knowledgeable ones.  Let's accept that we really don't have all the answers, just lots of questions that we can't yet fully understand.

Regarding autism, I was ignorant.  Six months ago I knew really very little about it.  And although I keep reading, there is still a massive amount I don't know.  And although I have a few autistic friends, knowing them and learning of their lives doesn't by any means give me cause to say I know about the lives of all autistic people - because there is so much variation.  Six months ago I hadn't even come to the point of accepting that I too might be autistic - but I've covered that in another post.

I was ignorant.  Knowledge coming from the media, which often gets things wrong.  Knowledge coming from stereotypes.  Knowledge coming from seeing the sort of traits mentioned on Simon Baron-Cohen's autism spectrum test.  Basically - often dodgy knowledge and sometimes totally erroneous knowledge.


I was ignorant about autism.  I've been ignorant about many things.  Two years ago I knew virtually nothing about anything to do with transgender issues.  And yet I am transgender - so my ignorance really didn't serve me well!  There are many things I am still ignorant about and there always will be.  I am fine with that, as long as I am always prepared to own up to what I don't know and am always prepared to keep learning.  And I confess that on occasion I've slipped and haven't lived from a position of that humility.

I was ignorant about autism.  But that's fine.  Because, in the main, I was able to accept my ignorance about other people and not tell them about it and say all those things that well meaning ignorant people have said to me in the last few months. Unfortunately the same ignorance meant I could not accept myself.

And if I'm totally honest, I think my beliefs, somewhere deep down, ran contrary to that statement of Temple Grandin,  "Different ... but not less."  I was fearful.  "If I admit this, if I tackle the possibility head on, does that mean that I am admitting that I am not just different, but I am less?"  The answer, of course, is "No."  It's taken seeing myself plainly in the mirror of another person's life to get me to realise that I can accept the possibility and not have to fear myself.

Like Temple Grandin, like my still few openly (to me or the world) autistic friends, like all autistic people, I am different.

But not less.  Never less.  Never.

In fact, I am proud to be me.

I am proud to be autistic.

And actually in some ways I am glad to be autistic.

In all the difficult times I am still glad.

When breaking down from sensory overload I am still glad.

Beyond all that, there is so much good in this

And I am starting to recognise all these good aspects.

Get that?  I am GLAD to be autistic.

I could not imagine my being to be anything else.

I am glad.  I am autistic.  Good.  Celebrate.

Because it makes me who I am.

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.

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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.