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.