The inside of Autism: You should see the world inside my head

How Autism Feels From The Inside – Kieran Rose explains how being Autistic feels to him and takes you on a journey inside his own head.

“When I show people the things i create…they call me an ‘artist’…when i show them the inside of the head they were created in…..they call me ‘mad’”

Kit Mason Oxborough-Giles, Autistic and Artistic

A common description of Autistic children, especially those deemed ‘Low Functioning’ is that they are in a world of their own, lost inside their heads and to be honest, if they have a head anything like mine, I can’t blame them.

The inside of my mind can only be described as Tardis-like in that, like the Time Machine piloted by Television Time Lord, The Doctor, it’s definitely bigger on the inside than it is on the outside.

My inner world is vast, perfectly interactive and pretty damn cool.

Before You Begin…

***Welcome to my head.  Hold onto your hats, it’s going to be a bumpy ride that may freak you out.  I do not speak for all Autistics here, just myself. I’m discovering that my head is a little unique to the degree that I can do things.  I honestly think that the processes I’m about to describe are accessible to all Autistics, just some are more self aware and conscious of the inside of their heads than others.  If I were able to apply the things I’m going to describe to the real world, I’d probably be diagnosed as a Savant.  I can’t though. Oh well***

Cue The Music…

A New Perspective On Autism

A study done in 2007 described Autism as the Intense World Syndrome. This basically means that the model of Autism as a disability (i.e. that because of some mental deficit that we are broken in some way) is wrong.  Instead, the theory purports that actually our minds work too well, that we have a constant mental overload that we try to switch off. I don’t know much about this theory, other than it fits the facts and it feels kind of right to me.  It’s also being borne out, to a degree, with the current line of thinking that Autistic people do not lack empathy, more that we have an overwhelming amount of it, so we have to switch it off.

I don’t feel that this conflicts with the Neurodiversity model, but I am happy to be corrected regards that, as what I’ve written just now is as much as I know about it. You can find out more about Neurodiversity in my blog called “Why Neurodiversity needs Self-Advocacy” or by buying this amazing book by Steve Silberman, through my Amazon affiliate link, called “Neurotribes”. *(afil link).  Let me know what you think.

This line of thinking is also supported by a study performed in 2013 called “A new perspective on Autism”, that indicated that when in a normal resting state, Autistic children use 42% more brain power than Neurotypical children.  If this is true, it would explain why I have a world engine in my head.

My Head = A World Engine

The inside of my skull has been a hugely complex and difficult thing for me to describe; as can be attested by my previous efforts, which have fallen far short. Please bear with me as I take you on a journey into the depths of my mind, a place nobody but has been to before.  I’ve never even described any of this to my wife… When she reads it, it’ll be the first time (please don’t divorce me for being overly stranger-than-normal, Shelly!)

Please note, that this is not a work of fiction and this is soul bearing of the extreme kind.  This is my safest place that I am sharing with you, please tread lightly.

Two Minds?

Everyone has two spheres to their brains.  The conscious mind and the unconscious mind, like this:

My wife and I used to have deep conversations, pre-diagnosis, usually in Pizza Hut (Don’t ask), that I’d get upset during because we’d be talking about this social ‘Wall’ I had in my head that I couldn’t get around. We assumed then that the Wall was confidence related, turns out my brain was imploding.

We knew nothing about Adult Autism then, we knew lots about child Autism because of my Nephews, but Adult Autism was not something anyone talked about.  I think at that point it never even occurred to me that my Nephews would grow up, let alone that I was a grown up version of them.

So it turned out that the wall wasn’t made of confidence or a lack thereof, more that it was wave after wave of sensory information washing over and through me, coupled with the fact that my brain was so busy processing all that information that there wasn’t much left for communication nuances, beyond what was absolutely necessary. 

In my view, this is why my brain functions as I’m going to describe to you.

Three Minds?

In my completely uneducated view, based upon how I know the inside of my head works and loosely based on the findings of the above study, I purport that my Autistic brain actually has three spheres, the new sphere being an amalgamation of the conscious mind and subconscious mind, like this:

You’ll note the extra sensory information being pushed into the conscious mind, forcing it to dig deeper into the subconscious until it creates this grey area which I call the semi-subconscious mind, where so much information is being processed it forces to the mind to compartmentalise into different areas so that most of the processes done by an NT’s subconscious, are actually performed in the semi-subconscious, where I can actively participate.

So, without further ado, let me take you inside the workings of my head:

Escaping INTO My Head

The hardest part of this to describe is the actual physical act of going there.  I can literally escape into my head.  I do this physically.  Every time I need to find a memory, every time i need to think about something and every time I want to escape.

Imagine if you will, being present in one location, then in a blink of an eye, reappearing in a completely new location.  This is how I move from reality-present, to my in-head present.  My brain registers the need to leave and I am gone.  Body running on autopilot while I go on an information retrieval hunt.

Time passes differently where i go.  What can feel like an age inside my skull can be a split second in the real world.

I enter my head through a space i can only describe as a tunnel, I just appear in it.  I have no concept of having travelled anywhere, especially through a tunnel, but here I am.  I can’t turn around, or look behind me in any way, I don’t even think there would be anything there if i could. The walls of the tunnel are difficult for me to put into words, they are both dark and incandescent at the the same time.  It’s almost like I can’t see them, yet i am perfectly aware that they are there, because I can see them, just not with my eyes..

In front of me are four branches to the tunnel:

The left tunnel is short, about three feet (I’ve never measured it, though its a pace and a half in distance).  It ends abruptly with a white painted, wooden panelled door with a spherical, white wooden door handle, somehow this door is light, though there is no visible light source and the light does not spill back out into the original tunnel.  In the centre of this door is a letterbox.  Bronze frame and flap, just a bog standard letter box.  The flap is hinged to open outwards towards me. From behind this door comes a whooshing sound, kind of like you’d imagine the sound the vanes of a windmill to be make on a windy day.  There is also a fluttering noise, like the pages of a book if you swept your thumb over them quickly and all at once.  These noises can only be heard once you step into the light of the doorway.  Not from the previous space.

As I said earlier, all of this is instantaneous; I’m in the real world and then I’m not.  When I’m trying to recall a memory or some information, I find myself in front of the white door.  I’ve never seen inside this door, I’ve never had the will to open it, literally can’t make my hand lift up to turn the door knob.  Believe me I’ve tried.

As I stand before the the white, left-hand door, the fluttering, flapping and whooshing noises intensify.  The only thing I can correlate the process that I think is happening behind that door to, is that my memories are filed in some kind of enormous Rolodex®.

Some of the time, a piece of white card is posted through the letter box, it has the name of the memory printed on it in large black ink, the card falls out of the letter box and then is in my hand.  I read the writing on it and reappear back in the real world with the memory or information at the front of my mind. 

The commentary of my mind then tells me the words to say.

The simple processes work like this: say boiling a cup of tea.  I visit my Memory Rolodex® and it gives me the instructions, I take them back to my conscious mind and my mind commentary reads me the instructions.

The obvious difference between my mind and an NT’s mind is that in their mind, the act of making a cup of tea is a subconscious thing, the body takes over without you having to think about each step.  My mind means that i DO actively think about each step and every step for everything else i do.  That noise and voice that you don’t hear, I do constantly.

At other times the flapping goes crazy, kind of out of control, the whooshing speeds up and loses it’s rhythm completely and then there’s this most horrendous crash that sounds like gears grinding and crashing, coupled with the sound of someone passing a lump of metal through the air intake of a jet engine. A metallic scream:

Nothing gets posted through the door. I reappear back in reality and watch myself stutter over what i want to say, my mind entirely and terrifyingly blank.

I have to reiterate at this point that this is my actual thinking process, not a visually descriptive representation of the steps I go through. Again all of it happens in a split second.

The second process (my memory Rolodex® grinding to a crashing halt and nothing is posted through the letterbox), happens often in Social situations where I can’t keep up with the conversation and/or if I am anxious.  It often gets to the point, as i have described in one of my other blogs called “How to hide your Autism”, that I get thrust out of my body and start to helicopter view it.  I watch myself in the situation and have no control over what is happening.  This is probably the biggest reason I prefer writing to verbalising.

To the left-centre, the tunnel goes on to a pinprick of brilliant light. I’m going to leave the centre-left tunnel for a moment as for me, it’s the hardest one to describe, make sense of and probably the hardest one for you to digest!

To the right-centre, the tunnel goes off into the distance but has a series of grey, gun-metal doors on the right hand side, such as you’d expect to see in a prison. Each of these doors are riveted (50 times on each side and 20 top and bottom) and, in the centre top of each door is a small, rectangular glass viewing panel.  None of these doors have locks or handles, all are shut.  Above each door is a single bare light-bulb.  The light is on above some doors and off above others.

Sort of like this one, but not:

The right-centre tunnel is where I store all the things I am currently dealing with, things that I can’t necessarily change, but are there nonetheless.  Each thing is placed individually behind each door.  When I look through the viewing panel, I see whatever my brain decides is a representation of the the problem. 

So, for example, if I’ve had an argument with someone over a bike, then the bike will be in the room along with the person I’ve argued with. A light bulb switched on above the door tells me that the room is full, switched off means that it is vacant.  This tunnel gives me no real thoughts or emotions at all, the contents of the rooms are the only things that do that.

When I perseverate over one of these things, which means, in part, to repeat a thought over and other again (usually until it’s resolved somehow), I find myself switching between the relevant door in this tunnel and the white door where i hold my memory Rolodex®, repeatedly, usually incredibly quickly.

Interestingly when I perseverate, the physical me often rocks from my heels to my toes.  It’s an  anxious movement which is the physical manifestation of what i am doing in my head.  I do the same thing when my Pathological Demand Avoidance kicks in:  The act of procrastination creates the stutter in my head and the physical body stutter too.  One of the reasons I go to bed so late, I want to, i need to, but i find myself procrastinating and then bodily stuttering.

To the farthest right, the tunnel goes on much further, the incandescence turning to greenish bio-luminescence as the wall changes from dark nothing to grey stone, moss-covered blocks, sweating with damp and moisture.  A smell permeates from down here, kind of like the musty smell of something gone off in the fridge that has a good layer of grey-blue mould growing on it.  Just visible at the end of this tunnel is a huge oak door, like one you’d find in a castle.  Three massive iron hinges hang on it’s left side, one at the top, one centred and one at the bottom.  On the right of the door are two huge iron bolts, one top and bottom.

Kind of like this one, but not:

The tunnel on the far-right is a complex one. Much like the white door, the medieval castle door is a place that holds back memories. The tunnel approaching it is, as I mentioned damp stone bricks. It’s cold, the kind of cold that permeates through into your bones and walking towards it is the only time, anywhere in my head, that I feel alone. Which is odd, because there is only ever me in my head.

Walking towards it I feel myself get smaller and younger and, by the time I am inches away, I am a child. 

The same child that I described in “Talking without words” , lost and confused.  If I reach out to touch the door it resists me, I can feel it vibrating and humming, pushing me away, yet at the same time it emits a sick draw, like it’s calling to me, aching for me to draw back the bolts.  If i put my ear to the door, the wood is unnaturally cold, it feels… dead. The only thing I hear is the beating of the blood in my ears and an occasional bang, like a huge clap of thunder which makes the door shake and rattle on its hinges, followed by an inhuman scream, like the whistle of a hurricane.

This door holds my bad memories and it’s somewhere I visit often.  The door doesn’t open, being near it is enough.  When I perseverate I can often find myself here, switching from between in front of the white door and this one, back and forth over and over.  Like the constant worry of the thought I can’t get around or rid of, draws me to bad memories. I usually have the same resultant physical manifestation of heel to toe rocking, or the urge to pace, usually in my kitchen where I can step on one tile and then another in a repetitive pattern.

The bad door opens very, very occasionally.  When I meltdown.  I don’t meltdown often, as i have mentioned in previous articles, I have a tendency to shut down when overwhelmed: to withdraw into my body and literally sit here, at the foot of these three tunnels, curled up in a ball inside my head. 

On the occasion that I meltdown though i feel the physical pull to that oak door.  My actual real-life body wants to go there, slide those bolts back and unleash everything inside and let it explode.  Sometimes i can divert the Meltdown; mostly i can.  One happened recently and it was the first full on one i have had in years: hours and hours of screaming and crying and shaking.  So much emotion just burning out of me.

Much of my childhood growing up is a blank. 

I remember enough to be able to write about my experiences, my feelings and the odd actual event, but the majority of the specifics are gone.  Someone might say to me:  Do you remember this… or that…? And, i can’t. 

Much of that is due to the overwhelming nature of Autism, the constant wave after wave of sensory experiences throwing us back.  Much of it also is related to how unhappy and confused I was.  I didn’t understand things, people, concepts.  Not understanding made people frustrated and unhappy with me, so I stopped telling them I didn’t understand, I withdrew and hid.  I was bullied, hit, singled out and picked on for not understanding those things, so I withdrew and hid.  I was different and made to feel wrong and bad.

All of that negative experience, that abuse, direct or indirect, is shoved behind that door.  All those memories, making that door bulge.  All of them calling to me.

Now for the middle tunnel:

That pinprick of light at the end of it.  When I look at it I am compelled, willed to travel along it. I often describe Hyperfocus as a massive electro-magnet magnet pulling me into the thing I am Hyperfocusing on, this is the same.  I move at speed; it rushes towards me, as I rush towards it.  Typing this now, it makes me think about ‘the light at the end of the tunnel’ that people who have died temporarily have spoken about.  Maybe to die means to go to this place that I go to.

I burst out of the tunnel and stop dead (I don’t fall over).  There is grass underneath my feet and it goes on till it meets the horizon in front of me.  It goes out either side of me too, as far as the eye can see.  The sky above is brilliant blue, azure and rich, with the occasional wisp of white cloud drifting past, despite the fact that there is no breeze.  The heat of an enormous golden sun warms my back.  I know its there despite the fact that I cannot turn to see it.

It’s here, on the plain of gold and green and blue that my fun truly begins.  It is here that i can build worlds.

I can build anything, with detail down to the minutiae. I see what I want to be there and it appears: towering cities with golden spires, jungles with exotic plants, mountains, deserts, a tropical island, vaulted cathedrals, space stations, whole solar systems.  I can move anywhere, touch anything and interact with it, I can smell the scents and taste the air.  I feel temperature differences and breezes. Vast ghost planets, without the scariness of being alone and devoid of breathing, moving life.

Interestingly I still appear bound by both biology and physics.  I can’t fly, if in space I need a suit and oxygen.  I can’t travel beyond the ability of my body to travel.

When I am done, I can sweep whatever I have created aside by just not wanting it to be there; and build something else.  The interesting thing is that I can pull up things I have previously built, even from years back, saving them as if on a computer game, which I can return to at any time.  I think, I flicker between plain and white door, the card appears in my hand, the world appears.

I can see other things too, put a Rubik’s cube in my hand and I can see it in my head, make moves, turn them back, rotate the cube through 360 degrees, but I can’t translate those actions to actual Rubik’s cube in the real world beyond a few moves at a time.

I have maps of places I have been and can run them in 4 dimensions.  I use them wherever I go, which is why I count steps everywhere in the real world.  The act of step counting corresponds to movement on my map.  It’s when something has changed in the real world to make my map wrong, that i get thrown and my brain crashes.

For anyone who has seen The Good Doctor on ABC, an American drama about the Autistic Surgeon with Savant syndrome (I’ll leave comments as to the programme’s quality and content to other people, i’m just here for the analogy), you’ll have an idea what I mean.

The programme is based on a Korean drama by the same name, in which The Good Doctor has the ability to pull images from Medical textbooks into his head when needed.  So say when operating on a Liver, he can imagine the component parts, see where the clot is and where to cut etc.  I saw him disassemble the component parts of a helicopter rotor in his head too.  I do this.  But none of what I do in my head is translatable to the real world by either my tongue or hands. I’m a fond fiction writer and can see my characters moving through scenes in front of me like watching a film, though my ability to translate that description to the written word, or in drawings, is not good enough to represent what i witness.

Hence why I am not a Savant. My hands and tongue cannot do what my head depicts or demands. It is incredibly frustrating at times.

The lure to disappear inside my head is enormous.  In a lot of ways its a far superior place to the real world.  I can literally do what I want and go where I like.

But there is one significant problem with being there:

I’m on my own.

Beyond running a film scene or turning a fiction work I’m writing into a film; there are no people.  Nobody to have a conversation with, nobody to laugh with.

Don’t get me wrong, I love being socially isolated at times. I’d love every now now and then for everybody just to disappear and leave me alone.  But if that was the case permanently, I’d never hold my wife, I’d never play with my children, I’d never read anything new (hell, even my imagination is limited, I need other people’s imaginations too!) and I’d never write again, there’d be no point, there’d be nobody to read it.  As scary as it is to put my words in front of someone and face their judgement, I write be heard, to be understood, to help.  It’s what drives me the most at times.

I don’t know if I’ve done my head justice.  I can’t get across how utterly amazing it is inside my skull and utterly terrifying too sometimes.

As I said at the start, this is my head.  It might not be your child’s, or your husbands as I can only tell you what is in mine.  I’ve met enough Autistics who think similarly to me, to know that although I am rare, I am not unique, it’s not just me.

Do you know how we find out this stuff about each other?

It’s usually when one person says cagily “I do such and such…” and other people go “Oh!  I thought that was just me!”

If you ever look into an Autistic group you’ll see comments and posts like this all the time.  I recommend you do, because you’ll never have a greater insight into your child’s head.

Knowing how your child thinks enables you to see things from their perspective, (something Autistic people are often accused of not doing), seeing from their perspective enables you to support them in ways you never thought possible.

If you’ve made it this far, can I recommend two of my other articles?  The first is “Talking without words”, which touches on my life as small child and how interacting with the outside world was an impossibility to me.  The second is “How to hide your Autism”, (about Autistic Masking) which I did link to earlier in this article, but which I’d like to reiterate. It serves as a warning to parents, that if they don’t try to understand how the mind of an Autistic person perceives the real world, then hugely damaging processes can occur.

This has been a weird piece.  I’ve written about personal things before but never emptied out my skull and put it on display.  I don’t really know how to finish up properly so I’m going to let somebody else do it for me:

“Oh you should see the world inside my head”

Sister Hazel, World Inside My Head

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Read more about being Autistic and what Autistic Masking is