Saturday 20 June 2015

Three Sorts of Communication Systems - Autism, Sign Language, 'Normal'.

Learn Autism: One of an occasional series for surprised passers-by.

Sometimes, I find professionals and parents who are trying to 'fix' their autistic young person's social skills.
They will tell the young person that they are...
Not making enough eye contact
Not smiling appropriately
Not asking the right social questions
Not displaying an upright and alert body posture
Not taking turns in conversation
Not using the right body language
Flapping their hands or rocking inappropriately
Not staying at social events for long enough.

And they then try to 'fix' each one of these things. Various methods are sometimes used, including persuasion, blackmail, punishment, rewards, isolation, having sensory-and-routine-need items taken away.

OK. Let's stop right there.

Let's try another example. Suppose you have a new friend who is Deaf. They use sign language, and have done since birth.

You may notice straight away that they like to face you and stare right at you a lot.
You will notice that they move their hands a huge amount.
You may notice that they may lean towards you and away from you in exaggerated ways.
You will notice that they do not talk the same as you do.
You will notice that their movements are often exaggerated, as are their face expressions.

You and they use different communication systems, yes?

So...if you went up to a Deaf person and told them they were communicating all wrong, what do you think would happen?

Back to our autism example....

You see, we communicate differently. I'm going to generalise here.  Our brains are wired to handle communication differently. We see people best out of the sides of our eyes, not straight ahead. Straight ahead is too 'loud'. Eye contact is so painful for most of us that we cannot do it, and also hear you, at the same time. It's overwhelming.
Social words are also much harder for us, so we minimise social wording and concentrate on vital accurate information.  It's 'polite' in many autistic settings for us to miss out hello and goodbye to other autistic folk...and how are you, how is your family, etc. It saves overloading our communication systems.

When we encounter many non-autistic people, they communicate all wrong.
They make painful eye contact.
Their faces make strange expressions.  Their eyebrows wiggle up and down.
They wave their own arms about and hands about, randomly.
They ask bizarre questions like, "how are you" and you're not allowed to say how you are, because the 'rule' is that you say you are OK.
They can talk for hours and hours about absolutely nothing specific at all. This would cause our brain to literally overheat and  (in a good few cases) eventually electrocute itself, which we dread.
They use language that is filled with mysteries, like 'pull your socks up'. Mine are pulled right up, thanks.
They do language all wrong, you see.  They need to be trained with proper social skills....for autism.  Or do they?  Do we?  What about our Deaf friend?

So....what we have is three different communication systems in this example.
Most people use non-autistic social word communication.
Some use sign language.
Some use autism protocols.

Some use other methods.

 They are not broken versions of one anothers' 'language'. They are different, for different people, for good reasons.

 We don't need to fix one another. We mostly need to learn to understand one another, and cherish each person's unique way of communicating and loving us.

Wednesday 10 June 2015

Autism and Hospital Visits

I've spent a lot of time in hospitals.  For 14 months, I was in one at least once a week, on average.
They are a sensory, social and routine-needs nightmare for autistic people of any age.

Find out who in your hospital is responsible for disability access.  Talk it through with them.
Building trust in the hospital and its staff is so very important.

A good resource can be found at 
This is via the National Autistic Society.  The form lets people write about their particular autism needs.  It can then be handed to hospital staff to tell them those needs.

Above are two pictures.  The one on the left shows a hospital medical room, probably as most people would see it.  The picture on the right shows the intense colours and patterns that I would see.  This is what happens to my vision, when I'm stressed and under fluorescent lighting.  The lighting also flickers really badly, so it's like a strobe effect. 

I know there are going to be intense noises from the equipment, and echoing corridors outside.  I know there are going to be intense smells from disinfectants and other medical stuff.

I also have no idea where I will be waiting...probably under fluorescent lighting....or for how long.

All the time I'm waiting, my brain is getting more and more exhausted.  Sooner or later, the pain/overload builds up inside the brain wiring.  Quite literally.  And then I am almost unable to communicate at all.  The world becomes very scary indeed.  I will then only give short standard answers, not accurate ones.  Anything to get out of that room and away from the pain.

Hospitals don't often keep to appointment times.  Instructions and signage is often vague or misleading to really literal thinkers.  And staff assume that we 'just know' what they mean.  Often instructions are in complex language, heard against a background of other voices. It becomes one huge noise. It can help to have a picture of what will happen, not just words.  Do ask.

No wonder we get scared.  That's before someone starts prodding us, injecting us, examining us...with all the sensory difficulties there too.

It helps to have a known appointment.  First appointment of the day is good.  If there is a delay, please tell us.  And tell us where we can go to wait quietly away from others.

It helps to do a pre-visit, at that time of day, to test-drive how to get there, where to go, what the waiting room is like, what the loos are like, what the consultant's room is like.  Hospitals may be able to arrange that.
It helps to have a quiet space to wait in - or be allowed to wait outside, and be called in by mobile phone etc.
It helps to have that 'hospital passport' ready, and for teams to deal quietly and calmly with me, taking their time to explain.  Checking for understanding.
And explaining really carefully what physical things they will do.
If I need to stop for a while, is that possible?
Can I take a friend or relative in with me?  A calm quiet person at my side can help a lot.

How do I say 'stop' when I really have had enough - and will that be respected?
Can I take in something for comfort, like a favourite game or item?

Working through all of this gives many of us confidence that autism is being taken seriously. We truly do have brains that take in too much sensory and social information at once.  They really do overheat inside.  We need to be able to guess how much we can handle at once. So accurate information is very important indeed.

Too many autistic people cannot access healthcare at the moment.  It's as daunting as a wheelchair user finding that everything is up five flights of stairs.  Working as a team with the hospital makes the impossible possible, and it's worth it.

Saturday 6 June 2015

Autism - Social Clumsiness not Nastiness

First, if you are able, get to a computer with sound.  Switch it on and turn it up as loud as you can handle.

Second, watch this two minute film about an autistic boy entering a cafe.


That's the world we live in, 24 hrs a day.  A world so 'loud' that our brains are utterly overwhelmed by it.  Autism means that our bodies take in too much information from the world around us.  So much that we are deafened and blinded by it.  So much that our brain wiring literally overheats... and often stops us talking clearly with others.   Eventually, many of our brains will shut down all communication, to try to let the brain wiring cool off.

In the 'bad old days', those behaviours were believed to be deliberate nasty choices by us.  It caused a whole set of myths.  Various baffled psychological types would look over their spectacles... and declare that we were deliberately nasty sorts, who needed to be forced to go into restaurants and other such places.   And those myths grew and grew, and spread and spread.

Thank goodness for modern science that has shown what our world is like.  It's shown the bravery and courage of so many autistic people.  The ones who want to be with you at your event.  The ones who will go into that restaurant, or that busy street with you.  The ones who will attempt to be your friend, amongst that degree of pain and fear. 

We know that if our brain wiring overheats too much, it can feel like an electric shock. And afterwards, exhaustion.  An increasing number of specialists strongly suspect that autism is linked to epilepsy.  So it's been like someone going up to a friend having an epileptic seizure and accusing them of 'attention seeking'.  Just totally wrong.  A complete misunderstanding.

It's fear that drives us...fear of the pain of that sensory/social overload.  And we have a brain that doesn't communicate very well with non-autistic folk.  It's too literal.  We believe what we're told.  So we're often socially naive when with non-autistic people.  We can't see your body language or face expression.  Voice tone can be a mystery too.  We wouldn't know if that waitress in the film was bored, or sad, or empathetic, or angry, or anything else.  There is simply a person with a totally blank face,to us.   We then have to guess her emotion and guess our response.  If we get it wrong, yikes, often people get so angry with us.  Many, like me, can't even recognise who's who from their faces.  The picture below shows what that looks like, to me. It shows a group of people with their faces blanked out.

Imagine being in that cafe, in that much distress, and then complete strangers get angry with you, too. We've done that to too many autistic folk.  We've judged them against a standard that no-one else could possibly achieve either, if they had that brain design.  The person needs to get to a quiet place for a while.  They are genuinely afraid of the pain from the sensory/social overload.

If we're asking for help, it's not manipulation or laziness.  It's not disruption or 'challenging'.  If we have found a way to use words to ask, they might be clumsy. They might be 'annoying'.  But it's a genuine ask.  If we are distressed, it's no wonder.  Let us get to quiet and safety.

Please don't judge us on the basis of the whisperers who tell you nonsense about autism. Or those who only know old myths.  Find out for yourself.  Get to know all the courageous, kind, responsible and caring autistic folk around you.  We're most often lovely people, much misunderstood.