Friday, 9 October 2015

Autism: Why 'nice' is irrelevant for pain responses.

I get some strange ideas from people, sometimes.

One is that if autistic people like me are scared, it must be because we're paranoid, delusional, have some form of mental illness, are imagining danger...

It's difficult to explain how much physical pain we are in, every day of our lives, through misunderstandings of our needs.  It's outside of the understanding of most people, because most people... simply are not.

How are we defining such pain?

By noting that autistic brains are physically wired differently.  Our brains take in too much information at once.  When that happens, it literally overheats.  Imagine an electric socket in the kitchen.  Imagine plugging every single appliance in the house into that one socket. What is going to start to happen?  That's it.  You're now imagining the brain wiring physical limits of our brain.  We take in overwhelming detail from social stuff and sensory stuff.  The wiring isn't designed for it.  It overheats.  Eventually the fuse board cuts the power, and we shut down.
Imagine being in a crowd where you can hear every single conversation at once, at equal volume, without being able to tune any of it out, for example.  That's us.

We get good at thinking ahead.  At balancing the input so that we have time to recover - to literally let the wiring cool down.  That's autism, from what we are seeing on the brain scans now.

Most of us find things like unexpected touch also extremely painful.  It's like an electric shock to the skin.  And that becomes one to the brain also.  We also find unexpected aggression towards us will have the same effect.  Pain. 
The moment that electric shock inside the brain happens, we're temporarily zapped. Pain, shock.  Out of it.  Gone.  It becomes a world of pain and confusion.  A world where we temporarily can't take in instructions or listen to language.  A world where we cannot communicate our needs correctly, or get ourselves to safety.  A world where we become a sitting target...not just for predators looking for their opportunity, but for people to have a go at us for temporary random behaviour or over-explaining or forgetting social rules.  How dare we behave like a person in intense pain.  Why can't we just choose to 'behave'. 
We become fearful of people who don't listen to our needs, and put us in positions of extreme pain.  Yes, it may be accidentally - but it's not hard to understand that we need a quiet space sometimes, really.  And no sudden physical contact without permission. I have underlined the important words.  No we don't want social isolation - we just need to be aware of an oncoming hug and agree to it.  And enough accurate info and timings so we can plan for sensory/social overload in the hours ahead.  It's not rocket science.  It's simple respect of our brain design.
"But person X who you are now avoiding is So Nice!". 

I get that, a lot.   And that makes a difference to my brain electrocuting itself under Circumstance A B or C because...?
It's nothing to do with who is nice.   Why is that even a question in people's minds?   If your friend has a peanut allergy and goes into an allergic episode due to that.... do you rush to them and tell them their behaviour is so unreasonable..... because the person who gave them a curry with peanuts in it is nice?    Well, why not?  Yes, because that makes no sense at all.  You'd want to find out how they ended up with a curry with peanuts in.  You'd want to get help for them.  It would never occur to you to tell them to just be a better Christian and stop reacting to the peanut allergy.   Or offer them some counselling for it.
But a few people say it to us, on a regular basis.  

If person X's behaviour has given my brain an electric shock, that's what happened.  It's nothing whatsoever to do with their niceness.   It is not a judgement on them.  Well, possibly it's a comment on how seriously they have tried to understand my safety, if it's someone who has had some training.
My questions are simple.  Am I safe with this person?  Do I understand enough about them to know that I can trust them to treat me with dignity and respect if I am in pain.  Instead of turning it into a character assassination of me.  Do they give me accurate information on what's ahead, and when.  Simple questions for simple reasons.

Learn why autistic people are afraid of some situations, or wary of some people who have disrespected pain boundaries or forward-planning needs.  It's not paranoia.  It's not control and manipulation.  We don't hate people.   We have plenty of empathy.  We just wish more people had some empathy for us and the situation we live with.

So, it's a physical difficulty with controlling the internal temperature of brain wiring.  And a real difficulty trusting people who put us in situations where it gives us an electric shock.  Powerful incentive not to be near them again, eh.  The courage we have to keep going back...well, it's quite extraordinary. I am so honoured to be amongst such hugely brave autistic people.