Monday 4 July 2016

Autism: Brain event, not nastiness. An example for parents.

For a very long time, autism was believed to be about power, control, nastiness, manipulation, lack of empathy.  Oh, and it being 'only boys', of course.

Parents and carers were taught to use punishments or coercions to get the child to behave more 'normally'.
Autism is not a behavioural condition, at all.  Nor is it a lack of empathy for others.  Half are female.  Wonderfully diverse gender and sexuality expression, too.

It is understood now to be a sensory and information-processing difference, part of the natural diversity of humankind.
Let's look at an example of where things would be misunderstood, between a non-autistic parent and a young person.

A young person who perhaps has had to move house.
For many people, this is a difficult time.  For an autistic young person it can be overwhelming.

Look at these two pictures.  The top one shows a living room as perhaps most people might see it,
The bottom photo, how I would see it, if overwhelmed with new sights, sounds, smells, routine-changes.  I barely know where to put my feet, let alone how to find my way round it.
The intense smells of a new place are extraordinary.  The soundscape is so different.  We can hear noises from such a distance, and cannot filter them out.
It can take us weeks to settle in and start to really feel comfortable there. It's like being partially blind and deafened.

Our brains are having to work super-hard to adjust.  And that means they are already on 'hot'.  The brain wiring for solving social situations is going to be inefficient.

Let's look at autistic brain wiring,  compared to a non-autistic brain.

On the left, the non-autistic brain solving a social situation and talking about it.  The coloured area shows the bit that's working.  A sort of 'broadband connection'.   Easy.  On the right, an autistic brain, solving a social situation and talking about it. Bright colours throughout.  The whole brain is involved, pretty much.  Massive electricity, massive heat happening.  And if you keep adding more electricity and more heat, guess what happens....

Meltdown or shutdown.

Meltdown:  The brain electrocutes itself, silently.  The young person starts to behave erratically, much like an episode of Tourette's.  There may be sudden swearing, wild behaviour, running away.  It is not aimed at getting something.  In fact, giving the young person something makes no difference.  It is not a 'tantrum'.  It's more akin to epilepsy.  It cannot be reasoned with.

Shutdown:  The brain switches off the ability to think, talk, perhaps move at all.  It can look like sulking or non-compliance, or rudeness.  It is not.  It's like being trapped in a hell where we cannot speak or move, literally.

It takes about an hour and a half to cool the brain down again and 'switch back on'.  And that hour and half assumes that we're able to achieve enough quiet to do that.

70% of us have shutdowns, not meltdowns.  It's a shame that autism is always associated with meltdowns, therefore.  Lots of us never 'melt-down'.  In fact, a lot of us are so compliant and nice that our diagnoses are missed until way into adulthood.

Supposing a parent or carer's response is this:

Eye contact.  That's like an electric shock all by itself.
Loud voice.  That sounds like an explosion.  No idea what the person is saying, at all.
Physical contact, forcing the child to stay there.  That feels like an arm is in a vice.  The pain may be indescribable.  Even fairly light contact during an autism episode can feel like an electric shock, and cause a lashing-out to get away from the pain.  It's not a deliberate attack; it's a response to someone doing the wrong thing at the wrong time, and it's not in the person's control.  It's pure fight/flight/fright 'animal instinct' during the brain emergency.

The parent or carer perhaps thinks they are dealing with a temper tantrum.   It's not.
And the longer they keep doing that stuff in the picture, the longer the brain event will continue.

What to do? OK, first of all, realise that this was the very last thing that the young person wanted or needed.  They have been put in a situation their brain cannot handle, somehow.  Often the case if they come out of a long day at school, then have to try to interact with others or go to the supermarket, etc.   An already hot brain, and now faced with the impossible.

Remember - this is about reducing the temperature inside the brain.  Cool, darker room, where possible.  Or find them something safe to climb under.  Reduce noise.   No eye contact.  Only the most simple instructions for safety, perhaps backed up with a visual signal.  Perhaps a favourite comfort toy or hobby.  Perhaps a blanket or coat to wrap round them or hide under.  A pop up tent in a room can be a solution. Perhaps noise cancelling headphones to muffle noise.  Perhaps sunglasses to take light levels down.  Wait, wait, wait.   Do not take any notice of swearings - they are not in conscious control.  Yes, it's a bit bracing to be called a selection of names, but it happens with Tourette's, too, and it's part of some autistic people's brain responses.   Nor can we hear you properly during a brain event.  The last thing in the world that young person needs is parental intervention right now. Let them come to you when they are ready.  Be there, quietly, in the background.  "Less is more".  And afterwards, just reassure.  There is no point punishing someone for their brain getting too hot.  There's nothing they can do about that. 

Successful autism parenting means planning ahead for 'what is going to literally overheat this brain right now' and 'how do I get my child to that quiet cool-down space'.  If there are other young people involved in the family, then obviously compromises may need to happen.  Think ahead for those too.   Try to do big shopping trips during quieter times.  Try to think about taking emergency stuff with you, e.g. the noise cancelling headphones, a favourite something to focus on.  Don't expect a lot of chat.

We never, ever go into meltdown or shutdown for fun, or to get stuff, or to control people.  It is not in our control at all.  It is painful, frightening and exhausting. In fact, we can be exhausted for hours or days after a serious incident.  It's like assuming that a diabetic friend is deliberately being nasty when they go into a low-sugar episode.  Or assuming that a Blind friend is being deliberately rude if they fail to notice you in a crowd.

So, be our allies.  Please don't talk about us as if we are filled with hate, or trying to dominate your life.    If we're swearing at you, it's all our brain can do right now, and what it's trying to say is, "Please help me find safety".  Or, "Please help me find out what's hurting me right now", or "I don't feel well but I'm not sure how to explain it".

Can autistic young people sometimes just play up?  Of course.   Not always easy to decode, but there's a difference between the two.   A tantrum usually involves looking for attention and it stops when the young person gets whatever that was.  An autistic meltdown won't be like that.  This link is to the Girl With the Curly Hair's summary of the differences.  Worth a look.

If you are unable to find a trigger for meltdowns and shutdowns, get an autistic expert in to help.  They can help to spot what is triggering something, and work with your family to resolve it.  You can get in a non-autistic expert, yes, but they have to guess what's happening.  We actually know.  Not ego.  It's simply that we can 'tune in' to the sensory and social environment and spot the triggers, using autistic senses and an autistic brain.  Non-autistic people are not equipped with that. 

As well as my national work on this subject, and being autistic myself?  I have been parent to the most wonderful autistic young person.  Now an adult, and working with me nationally on autism and how to help families and professionals to understand it.  Been there, and got the proverbial t-shirt on bringing up an autistic child.  I've worked with groups of autistic children of all ages.  I've worked with autistic adults of all ages.  I live in an all-autistic household, and most of my friends are autistic.   Absolutely fantastic people.   Honest, dedicated, passionate about interests and specialist topics, deeply caring about social justice.  Generalising, but there are few exceptions.  

Get to know us, in ways that respect our sensory needs.  It's always worth it.
And get to know that autistic professionals are now widely regarded as the top experts in this field.  We train the other professionals on autism, and we work in partnership with them.