Friday 14 April 2017

Until I can try no more

Attending a big gathering. From personal experience, as an autistic child unable to use language to communicate.
In the morning, I woke. Dreading what was ahead. Would I be able to cope? I didn't know. There were too many variables. Too many unknown social things. Too many unknown sensory things.
I get out of bed...into a bathroom. The ice cold of door handles, surfaces. The shocking heat and noise of water. The stench of perfumes and fragrances. The rough pull of towels on skin. The intense pain of brush through hair. The retching overpowerment of toothpaste on scratchy brush.
I get dressed, pulling on each sensory nightmare, struggling to do up buttons and sort out directions of which arm and leg goes where.  I try to keep my clothes the same, but this is a big event. Big events mean different clothes, different painful shoes sometimes.
I eat breakfast, each mouthful a different combination of texture, flavour, smell, hot, cold, pressure...My vision and hearing works so differently from that of others.  The detail fascinating...or overwhelming.

I'm already part of the way through the amount of energy I have for the day, and it has hardly begun.
I cannot see faces, but I know the shape and sound and movement of my trusted carer.  They use words to tell me what to do, but my brain struggles.  What does the word's thinking, thinking....visualising it, trying to imagine what that word translates to, in pictures.  Mine is visual autism.   Others have different kinds.  My brain records the 'sound track', and replays it.  Sometimes I'll repeat a word over and over, trying to build new brain wiring to match my brain's pictures that sound.  I'm told off for repeating the word over and over.  I don't know how else to make my brain do the wiring for it.  It's confusing to be told off for learning in my own best way.  I use my body to sense what is around me....using touch, using movement.  Flapping my hands means I can feel where the rest of my body is, can detect how far apart I am from something.  I'm told not to flap.  It's wrong, I'm told.  So now, I don't know where I am.  This is better, I'm told.  Why is it better?

Now, I am put in a car. The noise, the movement, the unknown. When will I be there? What lies ahead?  I have to hope that I have enough information.  What have I been told or shown?  A plan, a map, a photo or two?

I get there, and there is chaos. The door opens, and the noise is overwhelming. It smells different, it looks different...and I realise that I am stepping out into an environment so alien that it might as well be the surface of the moon. I cannot see faces well, so there is a sea of strangers in front of me.  My carer becomes part of that sea of movement, that extraordinary chaos.  All I know is that the car is at least a safe place to be. At least somewhere I know the feel of, the smell of. The sound of.  A place of relative quiet, where I can have my own sounds, my own possessions.  Where am I going?  What is ahead?  It's absolutely terrifying.

A person tries to get me to leave the car. Persuasion, urging, bribery, nothing works. It's social pressure to add to the sensory heck. Now, I have to please someone, even though I am desperately afraid of my brain hitting 'overheat' and me collapsing down, down into shutdown. The place we fear. Well, for some it is meltdown. But the effect, so similar. A brain event, where the brain can no longer process anything... and goes into absolute emergency 'stop' or random whirling. The sort of fight/flight/fright/freeze stuff of nightmare. The nightmares you would dread. Those. Or a total blank, in shutdown.  Just pain and fear, unable to move or speak.  Ahead, if there is meltdown for a child, often pain from rough handling, loud voices, accusations....and the recovery, through exhaustion.
How much of this is ahead?  Minutes?  Hours?  Days?  I don't know.

The pain and fear builds.

I want to love the person who is doing this to me. They are all I know. They are my world. This must be important. This must be vital, for them to do this. It must be more important than I am, than my life is.  There must be a reason why the choices made for me hurt so much.  There must be.  

I want to please I will try....and try.....and try....

Until I can try no more.

Today, I hold in my heart all the non-verbal autistic children who wish their carers did not put them through this stuff.  No matter how accidentally.
Vital stuff is of course important.  We all have to do something to keep ourselves clean and well, etc. much happens that could be done in kinder ways.

"It's their autism - it makes them have meltdowns but we love them anyway".  I challenge this.  The overwhelm is what makes nearly all the meltdowns or shutdowns.  Overwhelm that other brains 'tune out'.  Sensory stuff that other brains do not detect.  Social overload that other brains cope effortlessly with.  There are alternatives to nearly all of that. Alternatives less likely to overwhelm.  Yes, we can't detect everything - but we can try.

Parents, carers, you need to tune in to the needs of your autistic children.
Start by detecting every single encounter with noise, texture, heat, cold, pressure and visual stressor that your young person has.  From the moment they get out of their scratchy, noisy bed (trust me, they are...) to the moment they climb back into it.  And all the social encounters too.  Make a list.  Every single thing.  If you have access to an autistic specialist, get them to help spot things you wouldn't imagine were a problem.  So many autistic children can hear and see at different frequencies to most other people.  A lot of adults, too.

Then, see how many of those sensory and social encounters are vital.  See how many can be altered, adapted, changed.  Autistic brains take in so much detail.  That detail literally overheats the brain.  It's not an attitude problem.  The brain needs enough balance between overwhelming stuff, and rest.

Look round your house for fluorescent lighting.  It's often in bathrooms.  It's often in those wretched 'energy saver' bulbs.  Those can flicker like a strobe light for many autistic people. Try swapping them for halogen or good quality LED ones.  Try noise cancelling headphones if your young person will wear them.  Try different coloured dark sunglasses if your young person will wear those.
Let them choose do-able clothes, wherever possible.

Use fewer fragrances, fewer rough textures.  Fewer sounds in the background to handle. Clear, careful instructions.  Visual clues, if needed.  More rest time, somewhere really low-sensory.  A hobby acts as a 'rest time' for most of us.  If the brain can focus on the passionate interest, it allows the other circuits to cool.

Make sure the young person knows what is ahead and for how long.  If possible.

Trust them when they resist....often they are saying, "I do not know whether my brain temperature can cope with what's ahead...".  No, really.  On the left, an autistic brain in a social chatting situation.  On the right, a non-autistic brain.  Brain scans.  That's the areas of the brain that are having to work.  Work equals heat.  Which one is going to get more exhausted, more hot?  It's a real challenge for us, not an attitude problem.

It's not 'their autism' that causes us intense pain, most of the time.  It's the unwitting stuff that parents, carers and teachers do.

Learn about autism, from autistic adults, from autistic children, from autistic parents, from autistic teachers and professionals. And yes, from non-autistic ones who are willing to listen, and learn, and work collaboratively with us.

An autistic child in meltdown is not 'being autistic', they are being in pain.  Yes, parents and carers, you love your child.  Love them enough to work together with them, watching and listening to detect what hurts, what is too scary.  If you take enough sensory and social overload off, they can work on communication skills with you, they can work on life skills.  A child in pain can only respond to the pain.

Let's work together for a world where the pain stops.