Friday, 29 January 2016

Autism and Healthcare

A lot of my life has involved healthcare appointments.
Like most autistic people, I live in fear of them.

The healthcare people are usually lovely.  It's not that.  It's the sensory hell and the intense pain.  It's also the lack of understanding of autism.   And it's the communication differences, too.
I've had to advocate for other autistic people in healthcare situations.  My family members, for example.  All the time, I'm trying to handle the amount of sensory pain I'm in, and make sure they are OK too.
What's it like, being in a medical room?  It's like this.

Above, a flickering fluorescent light, like a strobe light.  Around me, deafening bleeping and flashing lights on equipment.  Trollies rattling past.  Footsteps that I can hear from hundreds of yards away. Conversations echoing down the hallway.  Intense pain from light physical contact (thanks to our sensory system differences).

As a cancer patient, I'm probably one communication away from disaster, always.  In the past, teams who rush past, no time to learn about me, no time to deal with things or explain them.  No time to listen to why I cannot access this or that treatment.   By the time I've thought of the's too late.  By the time I've established a relationship with one healthcare person, they were replaced with another...and another...and another.  Kept waiting for two hours under strobe-lighting and in a 'bath' of chemical smells, I'm lucky if I can speak at all by the time I'm in the room.

Autistic people are two and a half times more likely to die early.  I think I can see why.

I'm very fortunate with my main team members.  Very glad to be working with more and more  healthcare professionals who want to change this.  All good people. People who are short of money and time and resources.  But who fervently hope for a future where autistic people don't die young. 

As I enter the next phase of trying to survive breast cancer and its treatments, I keep in prayers all those whose lives are already hard enough.