Thoughts on Autistic Hair-Dryers and Neurotypical Toasters.

I've said this before:  I thought that coming to terms with being autistic would be simple but the reality has been that it's possibly the most difficult thing I've ever done.  Yes, this is another one of those "Learning to be Autistic" posts.

As time goes by I begin to realise some of the reasons why it's so hard.

Last night I was writing to someone and used a metaphor for my life - that I'd tried for decades to be a washing machine but it turned out I was a bicycle.

This morning I mentioned this to someone else, who said "Great metaphor ... it's like this ..."  And she showed me a blog post, "A hair-dryer kid in a toaster-brained world."  And that's a much better metaphor so for this little post I'm stealing it.  I hope she doesn't mind me borrowing her rather fabulous metaphor.  If you're not stopping right now to read that post, I can recommend that you do so.

The metaphor explains some of the reasons why I, along with many undiagnosed adult autistics, had a difficult life and why being diagnosed throws up so many more difficulties rather than it just being a pretty rubber stamp on a piece of paper.

The author of the blog explains some things - as to how the autistic brain is quite simply different to the NT (neurotypical) brain and how autistic people thus have different skills to NT people and can have great problems in a world that simply isn't geared to autistic people's needs.  So if you grow up knowing you're autistic you can grow up knowing that you are different - but never less - and learn to be the best version of you that you could be.

But if you are autistic and grow up not knowing that then things become harder.

If you don't know you're autistic then you grow up ignorant of your hair-dryer self and are taught to emulate the toaster people.  You spend your life trying to make toast.  And you keep trying.  And keep trying.  And you fail so many times.  And even when you spend an age working very hard to make toast it ends up looking like very strange toast.  You spend your life wondering how everyone seems able to make toast so easily.  You look at the way the toast just pops up in their lives, how they have heat settings, a defrost button, a neat tray to catch all the crumbs.  And you do everything in your power to toast bread, muffins, crumpets just as they do and to toast in different ways.  Life becomes a frustration of failing to toast bread and you know you're failing and a failure because you think that you're created to be a toaster.  You're a bit useless because your toast making capabilities have obviously been destroyed.  But you keep trying each day to fit in as a good, functioning toaster.

So life can become very difficult and then you can be given all kinds of diagnoses as to why you're a rubbish toaster.  You're a toaster with borderline personality disorder.  You're a toaster with schizotypal personality disorder.  You're schizoid.  You're schizophrenic.  You're narcissistic.  You're depressed and that can only be solved by drugs and then therapy to become a working toaster.  I've received all those diagnoses and all those experts who diagnosed me completely missed the truth that I'm autistic and transgender.

In short you're a complete mess.  Because you can't make a decent slice of toast.

But then, eventually, you learn the joyful truth:  You're not a toaster after all.  You're a hair dryer.  Bliss.  Wonderment.  Excitement of excitements.  You were never meant to make toast at all.  You're not a failure, you just can't do something that you weren't made to do.  Then you read and study and learn that as a hair-dryer there are lots of things you can do.  And you think that's the end of it.  I'm autistic.  Hallelujah! That explains it all.  Let's move on with the rest of my life as an autistic hair-dryer.

It doesn't work out that way.

What I've learned is that learning you are autistic changes everything.  Everything.  Your entire life has to be seen and understood in a brand new, unfamiliar way.  And that process can become more difficult than you could possibly have imagined.

Today I've been thinking hard about just one aspect of this process: the coping mechanisms and all the things I learned over decades to get through life.  And today I come to a stark conclusion:  All those things were learned in order to get through life as some kind of toaster.  I sought so hard to be what I'd now call neurotypical, rather than seeking to be gloriously autistic and proud of who I really am.

That means I've now got to set myself to examine everything I ever found to get through life.  Because I am not a toaster and no longer want to be a toaster.  I don't want to try to make toast and be a terrible version of something that I never was in the first place.  I want to be me and learn to become the very best version of myself that can exist in this world, to become free, to become fully human, fully myself, fully at one with autism and and with every other aspect of myself.

I need to look at every coping strategy.  Every bit of therapy.  Every self-help technique.  Every little tip I've got in order to get through the day while trying to make toast.  And I've got to ask myself serious questions about them:

Will this strategy help me to become free as myself, or will it hinder that process due to being wholly centred around toast making?
If the strategy is a toast-centric strategy, can it teach me anything about how to be a hair-dryer?
What strategies are equally applicable for a toaster and a hair-dryer?  And I know that there are many things that are good tools for everyone to use.  Because we're all human and whether autistic or NT we share our humanity and share so many traits as individual human beings.
If a toast strategy does turn out to be of use, does that actually make it something I want to continue with, or are there other strategies that would more effectively help me learn to be myself?
What strategies are stopping me shine, stopping me live - even though I might have spent many years using them in order to try to shine and live?
And what new strategies could I learn to replace the old?  Strategies that will help me be who I was always meant to be.

I don't know the answers to any of those questions yet.  It's going to be an interesting ride finding the answers.

Mental Health Hell and the Positivity of My Life

My mental health has been pretty damn naff recently.  There have been horrible days and even worse hours.  Mental health has stopped me doing many of the things I wanted to do.  It's paralysed me at times.  It means that instead of going to Sussex for 11 days I have had to stay in Newcastle.  I've cried lots, broken down very publicly in the city centre, hurt my head through banging it, had a constant headache from sensory overload, and really struggled to keep going at times.

Yes.  I could look at the last month and choose to say that it's been a terrible time.  I could focus in on the bad things.  I could focus on the painful meltdown on Tuesday and the way I stopped being able to function when sorting things for refugees and the way I had to walk out of my mindfulness session and cry in the corridor.  Or I could focus on the good.

I could focus in yesterday on how awful I felt in the morning, how I didn't even have the spoons to get back on the metro and come home from town.  Or I could focus on how good the day got when it became a surprise.

I have a choice.  To focus on the bad and the pain.  Or to focus on all the good things, accept the bad, and move on from there.  Because the bad is bad.  And the pain is pain.  I can't deny it.  I can't pretend that all the rubbish isn't there.  But I can choose to focus elsewhere and see that, even with all the rubbish, life is a wonderful thing.

Because there is so much good and so much hope and so many good people.  Taking - as examples - my Saturdays:

Four weeks ago I danced with a new and very valued friend, barefoot in a thunder storm at Autscape, a conference/gathering run by and for autistic people.  Four weeks on I know that Autscape was very important to me and there are things that happened there and things it taught me about myself that I haven't even begun to process.  In some way Autscape will affect the rest of my life.  That weekend I met awesome people.

Three weeks ago I went to a barbecue from which arose decisions that are majorly affecting my life.  Majorly.  Three weeks ago I found somewhere that has almost become my second home.  Somewhere that I hope will become a big part of my life.  That barbecue was just a barbecue and the person who invited me was really just inviting me to a barbecue.  Neither of us knew that it would lead to so much in such a short space of time.  That weekend I met awesome people and because I met them I went on to meet more awesome people.

Two weeks ago was a day I could say was rubbish.  Because the first half of it was pretty bad in terms of mental health difficulties.  I wouldn't wish those difficulties on anyone.  But then there was a wonderful message from an awesome friend, a message that really helped me face the day.  And then on what had been that rubbish day I had a surprise meeting with another awesome friend.  We pretended to have an appointment at the optician in order to help ourselves to hot chocolate (my awesome friend does things like that!) and then we sat in the street drinking and laughing with each other.

On the worst days there is good.  On the day I broke down so much in town my friends came to the rescue - especially three wonderful people from Autscape who stayed with me as much as they could through constant text messages until I was recovered enough to get myself safe.  I count myself as massively fortunate in the people who have come my way recently, some of whom I've met in surprising ways.  It's like I suddenly have this brand new extended family of people who I love, who love me and with whom there are all kinds of unexpected connections.

A week ago I belatedly got involved in the work going on in solidarity with refugees.  It took seeing people and donations in my new second home before I finally decided that I couldn't stay away from giving something to the cause.  It's entirely possible that the future will see me continue to be involved in that in bigger ways.  And I've met awesome people.  It takes a lot for me to stand up and do something positive.  But I think right now I am standing and I don't want to sit down again.  The work is there and will continue to be there and, if I allow it and choose it, there is space for me to be useful.

And tomorrow I go to a meditation group for the first time.  The start of what will be a weekend I am really looking forward to - though a very different weekend to the one I would be having had I not had all the mental health issues I've had recently.  There will be awesome people there too and awesome people throughout the weekend.

So.  My life has been a mental health hell.  And I could choose to see it that way.  But it has also been a time of massive and unexpected blessings and of meeting the awesome people - many of whom I would never have met had I not experienced the mental health hell.  For the future I can only see more blessings and more awesome people even if the hell continues.

I had an hour this morning when my head was not hurting from sensory overload.  The first hour in a few weeks.  It was bliss to not hurt.  And sometimes it hurts so much and that pain inside my head falls down and across my body too.  But in this life, painful life, I rejoice and in the last weeks have become more and more thankful and more and more able to see the light that comes from without and the light that I have been becoming from within.

My painful life is one of positivity.  And overall, I love the way it is becoming.

Because the fight for LGBTQIA... rights is not just a gay rights issue.

The more I read articles about LGBT issues, or LGBTQIA... issues the more I think we need to separate the T, and Q, I, A, from LGB.  Yes, we've all been persecuted, legally and socially. Yes, we still don't have full equality and the situation worldwide is still atrocious.  But lumping the TQIA with LGB when they're such different things doesn't come without problems.

So many times the headline will use an acronym such as LGBT but the article will consistently speak of "gay rights" which is an unintended exclusion of heterosexual transgender people and of all the other people under that LGBTQIA... umbrella who are not gay.

Perhaps we need to stop speaking of gay rights and gay equality and gay anything else unless the issues only surround gay people.  Otherwise, just speak of rights and equality.  I fully support gay rights.  But the issues surrounding trans rights can be very different and so often end up being sidelined and forgotten in what is a praiseworthy celebration of the varieties of human sexuality.

I just read an article on four big companies and their stance on equal rights.  Hey, I'm glad big companies want equality.  But while the headline is LGBT, the article is "the fight for gay rights", "gay parade".  (Can we please, please stop talking of gay pride parades?)  And the T has naff all do to with "gay" because it is a gender issue, not a sexuality issue.  Just like cisgender people, a transgender person may be straight, or L, G, B or have any other sexuality and trans people, especially straight trans people, get lost under the crush of gay, gay, gay.  And intersex people get even more forgotten and lost in the lumping it all together and just talking gay, gay, gay.  Heck, even bisexual people can get lost and forgotten in the crush and that is part of that variety of human sexuality.

So can we agree not to speak of gay rights unless we're actually talking just about gay rights?

How Are You? A most difficult question to answer.

I got up this morning and wrote my Morning Pages - three pages of long hand writing about anything and everything.  Three weeks into that practice and every day they churn something up and lead to discoveries and decisions and things that need to change.  That's about 1000 words every morning.  And then I got sidetracked online by a one frame cartoon based on the question "How are you?"  And then the following happened.  Another 1000 words.  Typed - which is so much quicker than using a pen and feels very different inside.  So that's 2000 words of dubious quality and equally dubious meaning, written down by about eight in the morning.

_____________________________

 

OK.  So this is going to show me to be a bit weird.  Or possibly very weird.  That's nothing new.  There are seventy posts here already, most of which show up some kind of weirdness.  Yes, this is weird - but at least I know I'm not unique.  I know at least one person who feels exactly the same way I do and complains about this very thing.  And he's not even autistic!  Another person who doesn't deal well with those parts of social interaction that are just acceptable nice rituals.

 

One of my least favourite questions to be asked is "How are you?"  A question that is asked every day.  Part of the small talk and formal social banter we're all expected to participate in.

It's part of that social ritual that means we have to talk about the weather.  Someone is standing next to us and we tell them it's a cold day or warm, or wet, or dry.  As if they don't know that for themselves.  And then they have to respond with something equally banal.

I've learned the weather thing - I just agree with whatever the other person says.  Which becomes hard for me when one person tells me how cold it is and a minute later someone is telling me how hot it is.  That happens.  For me it's quite confusing.  I want to argue with the second person on behalf of the first!

 

But I have real trouble with the question, "How are you?"

 

That's because - as anyone reading this knows - very few people actually want to know the answer and I am a pathological truth teller.  I'm generally a very open book and the only secrets I keep are about other people. I have trouble interpreting the words "How are you?" as "Let's enter into meaningless ritualised talking for the next few seconds" rather than as "How are you?". I find it hard enough to give the meaningless "I'm fine" answer to complete strangers and have to force myself against all instinct to say it when asked by people I know.  Because while I know in theory that the question is just a piece of social fluff that doesn't mean anything, in practice, in the moment, I have to work really hard to remember that people don't actually want to know how I am when they ask me how I am.

Most days I can manage to do the polite thing:  "Hi.  How are you?"  "I'm fine.  How are you?"  "I'm fine too.  It's sunny today isn't it?"  "Yes, but they forecast cloud on Tuesday."  "Oh no, I hope it stays sunny."  "Yes.  I've got to go now.  It was good to see you."  "Great to chat with you."  "Bye."  Such a conversation is a bit like two animals passing each other and giving each other a quick sniff, though I dare say the animal conversation contains far more information.  But it's a conversation most of us have very regularly.

 

But sometimes I'm so drained that I can't manage to override instinct, honesty and openness about pretty much everything.  So what tumbles out is an actual answer to the question.  And that gets me in social trouble pretty frequently.

Please don't ever ask me how I am unless you want the answer, whether it's from the height of ecstasy or from a place of dark pain. Because for me, anything else is physically painful.  Yes, physically painful.  To answer "I'm fine" when I'm not actually hurts me.  To be asked a question that actually means "Please lie to me now" isn't easy for me.

Please don't ask and then tell me off if I respond with honesty.

If I ask you the question it means I actually want to be told the answer, or to be told that you don't want to tell me the answer. It doesn't ever mean that I am making polite and completely meaningless small talk.

 

If I ask you the question then I don't want the answer "I'm fine" unless you are fine.  Tell me you aren't comfortable with answering.  Or give the answer, whatever that happens to be.  But please don't lie to me just like most people lie to each other dozens of times a day and just like it's become our instinct to lie, avoiding proper relationship while pretending we have it.

If I ask you the question it means that I am seeking relationship with you, based on truth and integrity, on authenticity, not on social rules that force us to be dishonest with one another.

If I ask the question on my own initiative - not as a polite answer to you asking the question - it is an actual question.  It's not small talk - because I'm rubbish at initiating small talk.  It's not ritual.  It's not part of the liturgy of most people's social interaction.  It's a question.

I know all that is strange.  I know that the world doesn't work like that and that such questions will continue to be asked without meaning what the words say.  But it is the way this head instinctively works.

There is another reason why I have trouble with the question "How are you?"  It's open ended and can mean too many different things.  It's not specific enough and I can panic about what the question might mean before coming out with an answer.  Honestly, there are several reasons why I have trouble with the question and I've learned this year that these reasons are common for autistic people.

Some of them are echoed in the comments on this page.  Yes, I could be that aspie friend in the original post.  I'm not, but it's nice to know I'm not alone!

It's fascinating for me to slowly look at my life and thoughts and ways of being through the lens of autism.  It's bringing so much understanding that I never had before.  And with understanding and time and work I'll be able to learn to function so much better in society.  Whether it's the little things like small talk and questions like "How are you?" or the big things like the sources of my temptation of self harm in times of stress, or the ins and outs of sensory issues, defences and social work arounds the whole process is being a revelation for me and is turning out to be a challenge of a size I never could have believed.

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 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.