Now it makes sense

Throughout my life I didn't think about why I gravitated towards certain types of music.
Now it all makes sense...  Lol

  The Kinks - I'm Not Like Everybody Else

Our Right to live as we wish. Another step on the road to Autism Acceptance.

Going back to childhood interests takes us to a safe place and is so beneficial to our mental health and well-being. I have done so many times in my life. It has literally saved me during times of intense anxiety, stress, loneliness and social isolation.
For all the parents of Autistic children (however old they are) reading this, please don't ever try to take away your child's interest, even if it is not considered age appropriate by Society.  The toys and games of yester-year are our safe place, and our way of coping with the overwhelming stresses of living in this world that does not accept us. These are our ways to create sparks of magic and light, which shield our gentle souls from the darkness of the outside world. These our our tools to create inner joy and to stimulate and regulate our tattered senses. Do not remove our ways to cope.  
No we should not put away childish things, if they help us to cope with stress. No we should not be forced to still our movements because they make others uncomfortable. The sensory stimulation of movement and making sounds can be a vital way to regulate our overwhelmed senses, and to cope with the stressful environments in which we exist in our daily lives. Society must learn to accept Autistic people. Society must be educated to understand that there are good reasons for our actions. And with that understanding must come acceptance. 
For those that complain about so called Autistic 'Behaviours', think twice about suppressing or removing our natural coping mechanisms. If you do, then don't be surprised to find you trigger a major escalation in self-harm and a downward spiral in mental health. It is not worth putting your child through this, in the name of trying to fit in with an intolerant Society.  
This goes for Autistic adults too. Don't sacrifice your ways of coping in order to fit in with the rest of Society. It will only lead to poor mental health and for you to eventually burn out from the exhaustion. 
If the rest of the world is intolerant, then do the things you like to do in private. But do them. Stim, wave your hands, dance, echo, put your music on repeat, re-read your favourite books and binge watch your favourite tv. Repeat and relive whatever experience brings you comfort, whether physical or mental. 
If it does no harm to anyone else, then don't care about anyone else judging you for your interests or behaviour. There are Autistic people in the world that will accept you and will campaign for your right to do the things you need to do, to have a healthy and happy life. Be true to your own needs and let your mind dance free. Know that you are valued and accepted always, as part of the Autistic Community.  

The importance of home

Sturdy and dependable, like an old friend: the house was a permanent place for so long in my life. A haven in a sea of storms. The world outside might be cruel. People put there might not care of be understanding. But the house was always there. A bulwark against the storm.

A refuge where I could always find solace. Where there would always be a light left on by the family that cared about me. Where there were always people inside who I knew I could trust and that loved me.

Each room held a myriad of memories within its walls.

I think of them and even now the events play out in my mind.

The house was like a beloved friend and protector. I loved it and the memories my family made there. It represented safety and a place of love and kindness.

When we had to leave, it almost broke us.

Years later the image of that house occupies a space in my mind. I can close my eyes anywhere I am, and take a virtual tour of that safe space. I go there to meditate and to bathe in the warmth of nostalgia and important landmarks in my life.

Now the lights of my life are fading. The voices of the past grow distant. The stars of my family slowly wink out. I hold on to those memories we made there in that house together. They keep me warm, long after the sun has gone down and the shadows come for me.

Sleep: A journey through the dark

When I was young, early to bed was something that did nothing for me.
Bedtime routine brought me no relief or rest. Just because my parents turned out the electric light did nothing to bring me peace. For many years it was an unknown concept.
As in many areas, I learned very slowly and evolved inch by inch, eventually finding ways to cope on my own. This was a process locked within my head that I hardly considered, just accepted as a part of what I did to grow up. Dismissed into the ether as a forgotten figment. I suppose I assumed that it happened to everyone, so I should just get on with it.
Only now, in my fortieth decade do I consider what I did and what it meant to me. Each restless eve, finding my way by groping through the dark. Down the mental passages that the night unlocked.
Every night, as soon as the light went out, my mind went into instant replay of the past. First I would feel anxiety blossom. My heart would begin to hurt with the building fear inside. All of the social mistakes of the day, the week, the month would flood back, night after night. Like a traumatic movie screen that I was unable to control or turn off.
The need to sleep was kept at bay, darkness seeping inside my mind. Experiences of stigma and rejection throughout the day took their toll. They rolled like waves onto the shore of my unconscious mind. Kept closely controlled and locked away during the day, only to be unleashed when I closed my eyes at night, racing through my mind...

Anxiety feeding my fears

Pictures of the past replay endlessly

Holding back my need for sleep

Keeping me from  peace.

My thoughts tumble
One with my footsteps,
Running down corridors

Fleeing the tsunami:
A tidal wave of fear

Building inside, 

Clutching my heart.

As the years passed, I learned and developed coping mechanisms. Seeing all of this now, laid out before me, it is no wonder that I struggled so much during the day. I must have been exhausted. Not lazy, as I was often labelled.
I began a journey that would eventually see me learn a type of self-invented mindfulness, many years before I ever heard the term. 
My maturing mind opened pathways to progress, like putting on a new piece of music.

When this happens, the tempo changes. Portals open leading you down different routes.

I was putting the past behind me. Removing myself from the memories of negative situations. 

Dealing with daily problems one at a time and learning to shut down negative thinking at night.
Able finally, to embrace the safety and peace of a quiet mind.

Troubled nights: revisiting the past

When I should be sleeping, lying awake:
Restlessly reliving the day’s mistakes.
Thoughts scrambling with fear,   
My heart pounds and aches.
Wandering winding paths and trails,
Forever playing catch up, filling in my missing social traits.

Kicking myself over what I should have said and done,
Huddled under my blankets until daybreak.
The past replays within the cinema of my skull,
Wonder why situations are a struggle, so opaque.
I am fighting fires in my mind,
So much at stake.

Things I should have known,
That should come naturally, don’t.
Why is my honesty a burden?
Why are some people fake?
I’ve sadly learned at great cost,
From my innocent soul’s mistakes.

Only after a long league of years,
Have I learned not to fear the night,
But welcome it’s embrace.
To extinguish anxiety with a thought,
Will the wind to blow out the flame.
To wrap myself in the shadows, and hide my face.

Dealing with these problems developed instinctively over the years. What worked for me, I describe in the poem. As I got older, I was able to learn not to be afraid of the sensory depriving darkness. I was able to see it as a positive and peaceful thing and  to use a kind of instinctive mindfulness. 

Not sure if this makes any sense, but I visualised wrapping myself in the void, of emptying my mind of all thought. When anxious emotions or negative thoughts would try to surface, I learned to visualise the darkness as a wave smothering them. It was the way my maturing mind found to reject negativity and to put those thoughts away when I knew I should be resting. 

I also learned to catch myself, when my mind began its automatic default setting of replaying the stressful events that haunted my mind, when I should have been sleeping. It took a long time for me to realise that I was in charge of my night time thoughts and that it served no purpose to replay traumatic memories, as if seeking some answer that would rectify the past. I learned to put the past behind me and that in itself brought me a certain peace. When these memories would surface, I would concentrate on the darkness of the room and nothing else, refusing to allow the images in my mind to form. It was as if I had to train my mind to be still, like taming a wild animal.

I've never really thought much about it before or thought it would be interesting to other people. It's just something I learned and accepted that seemed to work for me. But I'm always happy to share something if its useful, so perhaps someone will find it so.

My struggles with social anxiety and selective mutism.

When people talk about bullying they refer to interactions, but when I look back on how school life was, it was less obvious. In a word it was insidious. I am thinking about how I was excluded, about the whispering in corners and the hidden glances. About the silent isolation of my world, in the middle of a packed noisy playground. Eating my packed lunch away from the others, alone on a bench. Short-lived attempts to seek attention that went horribly wrong. That was how I spent much of my time in Secondary school. Unable to simply say to people:                     “Can I sit with you?".
And then later in life, I settled into the same pattern. Wandering forlorn and alone down London’s streets. Reading alone in corners of large musty book shops.  Sitting on a park bench or in the stone square with the lions. People watching. But none of the people watching me. 
The words of the song 'People are strange' by Jim Morrison resonated with me a lot back then.

'People are strange, when you're a stranger,
Faces look ugly, when you're alone.
Women seem wicked, when you're unwanted,
Streets are uneven, when you're down.
When you're strange..
Faces come out of the rain.
When you're strange...
No one remembers your name
When you're strange...'
That's me. Able to talk freely to those around me, when I am comfortable, feel secure, know that I can trust them. But unable to approach a stranger. Unless there is a burning need and
purpose, and then I somehow force my way through the situation.

When among strangers... Unable to start a conversation. Not by choice. Words forced down by Anxiety. Simply impossible. Selectively mute. I am. Excluded until I am invited in.  I cannot simply initiate conversation. Engage with others. When I think about it, my brain returns:  ‘File not found’.   

The few friends that I do have, approached me, and proved to be what they said they were.
So few were the occasions in my life that I have heard these words spoken and directed at me: “Can I sit with you?” They are the key to the door holding back all the words I have inside.
I have tried to return their kind compassion ever since. Once I know I can trust you, I am a very loyal friend. This is because I value that rare gift far beyond the price that others who casually claim it.  I am grateful for the little that I have, and feel that I am rich. This blessed acceptance is a landmark in my life. By being accepted as human, I am enriched by humanity, and can finally accept myself. I have opened the vault that was sealed, tapped the power of my own self-worth. The river flows and I am made giddy by the tides of adventure that may await me. My journey has begun at last.

From mind-blind to masking

I came across the term mind-blindness today. Ostensibly the inability to tell what is in someone else’s mind. I have seen it before and not thought to apply it to myself. If did apply to me then what else might my mind be blind to?  This time something suddenly clicked.  It brought back a flood of memories and made me think back on my own journey of early development. It made me look at events in an entirely different way and to draw some startling conclusions.

So much is usually focused on the milestones that are visible to the outer world. A medical professional can point and say “Aha!” to the parent and put a tick or a cross in a certain box at a certain time. But what of the inner workings of the mind?  Who knows how and when these develop?
In my case I can see that during my education any staff that came across me from the sidelines who had some knowledge of psychology must have known that I was different. I wonder what conversations went on secretly behind the scenes. There was such stigma attached to such things in the 1970's that I can imagine any concerns were quickly put aside for fear of causing upset to parents. They clearly knew that I struggled mightily in every subject all the way through school. Why then, I wonder, did the school not try to support me beyond telling me off and piling on extra work? Probably because, four decades ago, not much was known or could be done. The knowledge just wasn’t there. Whatever they saw was noted in a private log and taken no further. It was brushed aside with the assumption that I would catch up with 'good old fashioned' hard work. This would explain why from starting primary school until the end, I would randomly be taken from class by a strange visiting professional, whose role was never explained. They would just watch as I did some task or other, such as arranged blocks in a certain order, or read in my slow and faltering way. Only a few other children ever had to do this.

My reaction to the term 'mind blindness' has also led me to think about my perceptions of self as I grew up. I have always seen my early personality, my childhood one, as something of a separate person. I was so different. I felt so free. A personification of childhood innocence. Somewhere along the way, I lost that carefree sense of joy and freedom. It was stripped from me, as more and more demands were made upon a mind that just could not cope with them. Very quickly I began failing academically. Year upon year of scathing school reports. I failed and failed. I crashed and burned over and over again. Academic failure fuelled a new alienation from my peers, who had no such troubles.
I also failed in between failing. At school break times, the social situations made me an outcast as time went on. Others developed interests that I could not fathom and I could not be part of the conversation. My own inability to start conversations meant that I was excluded from much of the social aspects of school. I was forced to wait for others to approach me to start a conversation, and I didn't know why. Thus my social interactions became fewer and fewer as time went on. So my sense of failure became two-fold. I was socially outcast and academically lost. This is what early school life represents to me, when I think of it. It was like starting at the very bottom of a mountain. Every day being pushed up one step at a time, whether I could climb or not. At the end of the day I would stop to look at how far I had come, only to realise I had come crashing down and was back at the very bottom. Every day began with the sense of a vast mountain looming over me, that I could not ever hope to climb.

I remember those very early days sometimes. Memories are blurry, like looking through a sepia veil. Everything was very one dimensional and from my sense of perspective. My mind was truly blind. I had no awareness, interest or idea that other people had their own points of view. I was very slow in coming to this realisation. Here, I automatically want to say that I am 'behind' my peers, but as I accept myself as I am, I realise that I am just different to them, moving at a different speed perhaps, but no less valid. One of the probable reasons for this is the way I spent my time and how I engaged with the world around me. I did not have a big or even average amount of social interactions. I was safe within the bubble of my small family circle of my parents, and occasionally my brother and sister. Instead of social engagements I often lost myself in play. Thinking back, my play with toys was not original or hugely imaginative in and of itself. But it was a repetition of my favourite scenes from television and films. Toy soldiers would enact action films over and over. Lego models would be created, not from the plans printed on their box, but to recreate scenes from children’s television or from exciting iconic moments in cinema. Much later, when I had finally learned to read, I would enact scenes from books with toys in the same way.

Due to the lack of diversity in my social circle I was extremely attached to my parents in particular. They were very protective of me and even in adulthood have always stepped in to fill the void and take the role of the friends that I never had for most of my life.

Over the years I have had to make many social mistakes before I finally understood how to behave in a given situation. Most people would by that time in life instinctively know how to navigate these pitfalls and avoid them. I have been slow to build up this social knowledge, yet I got there eventually. In doing so I have learned to pause, take time to examine each social  situation that I find myself in. People have remarked on my careful nature, calling me empathic and in some sense perhaps I am, because I have learned to look deeply and carefully, rather than just give a casual glance. On the other hand, I have also been called 'too intense'. At least I now have some sense of the mental state of others compared to my own. I can recognise the behaviour of others by the other examples I have seen. I have learned to value the social abilities that others have always just taken for granted. For they have been hard fought and won.  These scars and old wounds, defeats and victories are all on the inside, invisible to the external eye. They are part of my make-up and they guide me in being more socially able than I was. This is useful in navigating the world, still seeming so far ahead of me in some ways.

During all of this time I also learned another instinctive skill that I have in common with other autistics that I have met. Without anyone to help support our needs we learned to mask. We learned to copy the mannerisms of other neurotypicals around us. This helped us to appear to be more like them. It also caused us to disappear off of the radar in terms of any support in the future. So many of our needs were never addressed. This is certainly the case with me. There are things that passed me by that suddenly occur to me every day in my fourties, that I should have naturally picked up in my teens. These developmental facets went over my head and were buried in false assumptions for decades. This has probably led to decades of social faux pas that I was not even aware of at the time. 

How strange it is to realise all these years later that in a lot of ways I never grew up. I assumed that because I changed from naturally exhibiting my stimming and other autistic traits to masking, that this was the transition from childhood to adult behaviour. Now that I look at it through the lens of knowing about my autism however, this was clearly something else entirely. 

Everybody's Changing by Keane. A song I identified with as soon as I heard it.

The Lyrics of my Life

The Lyrics of my Life

In my life I have come through four decades of music. This existential parallel force has been ever present in the background. It has shaped me and imbued me with its power, helping me to grow into who I am today. As part of that evolution, I have not just enjoyed the music itself, but been exposed to the words of the songs. Often I play music that I enjoy over and over again. It is, in a way a form of audio self-stimulation or stimming, that autistic people like myself often indulge in. It helps me to relax, recharge my energies and to re-focus my mind.

As Autistics, we need this relaxation in some form at the end of our day, more than neurotypicals do. Having to experience a lot of stress from social situations, our sensory environment, or unexpected things disrupting the regular rhythm of life can all leave us very weak at the end of the day, both mentally and physically.

Some parents of autistic children often wonder out loud to me why their kids come home from school and kick off. Their teachers say that at school they seem to be model students, polite and passive. Yet when they see their parents they may become angry at the drop of a hat, aggressive, rude or emotional and tearful. I have to explain to them that these are all ways of releasing the pent up stresses and emotions that have built up during the day. When we reach the familiar safe haven of our home, we can finally let go. We can take of the masks that we have to wear during the day, whether at school or at work.

Often when that mask comes off, we let down all of our defences. All of our frustration and pain at stresses of the day then comes flooding out. This is not a bad thing, it is a necessary one. I tell parents that they need to understand that this is a necessary thing. This is not an attack on them. Their children are doing this because they are in a place of safety and with someone they feel they can trust. They are mentally drained and exhausted. Often they are not able to express their pain in any other form and must release it in order to regulate their bodies and to regain their strength and sense of balance. If left alone for enough time and allowed to follow our own pursuits, we will be able to recover from the slings and arrows of the day.  If we are not allowed this time to rest, then much more serious burn out can occur. This can be very distressing and take much longer to recover from.