Misunderstanding of the Day. A thread.
"People with autism don’t understand standard rules and conventions therefore if they have to wait for an appointment they can shout and get agitated". I found that extraordinary sentence on a London Council page, talking about #autism /ctd
Firstly, autistic people are amongst the best of the best at understanding rules and conventions, so that is simply wrong. But, let's look at the reasons why autistic people might become distressed if kept waiting in NHS settings. Here we go... /ctd
Here's a photo. On the left, how you might see a medical room. On the right, how my brain processes it, under intense flickering fluorescent lighting, surrounded by deafening machinery noise and overwhelmed by the stench of medical chemicals. It is blinding, painful. /ctd
Now, if a NHS person tells me that my appointment is at (say) 2pm, I will have spent the previous day preparing for (say) an hour of sensory pain from this. Because that's quite literally all I can tolerate before it's unbearable. Instead, the appointment is at 2.50pm. So..ctd/
/I have had to be there for pretty much that whole planned-for hour, without even beginning the appointment itself, with its equally painful testing and the assumption that I can still speak fluently and sensibly whilst in searing pain. This is not good, is it. /ctd
Some autistic people may very well respond the same way as everyone else responds when they're in searing pain. They may well shout, or run, or scream, or hide under something and rock back and forth. This is not because we don't understand rules. Goodness me! /ctd
The NHS has now chosen to ignore concerns of #ActuallyAutistic specialists and professionals, & decided that the way to deal with pain is to apply 'behaviour training' to the autistic people, to stop them *showing* they're in pain. I cannot begin to explain how wrong this is./
If an autistic person is distressed, it is no use blaming the autistic person, frankly. We need a mature understanding of autism, & why we need things to happen at the point we're told they will happen. Or strategies to allow for pain to lessen, if we have to wait. For example/
a) Offer a definite appointment e.g. first of the day.
b) Offer a 'quiet room' where sensory hell can be minimised.
c) Keep us informed of delays. Technology exists. It is possible to text us.
d) Allow for our own preferred communication styles/ ctd
e) Switch off fluorescent lights if you can, or hold appointments in a different room with natural lighting if you can
f) Allow noise cancelling headphones, sunglasses etc. Respect those.
g) Assume competence, and allow time and space for answers & explanations /
h) If you are going to use physical contact, injections etc, expect different pain responses and different levels of pain. Know that some of us don't feel pain much, so standard testing does not work. We might have a broken bone and be unaware, or unable to say. /
Be aware that many of us respond differently to medications, and may experience very very unpleasant side effects from standard doses of medication. We are not 'attention seeking' or 'failing to understand why it's important'. We do not need behaviour-modification to solve it. /
Mostly I would like #NHS staff & anyone else in our lives to know that autistic people are fantastic, & use a different communication system to other people. If any of us are displaying distress behaviour, it's because we're distressed, not stupid.
Thank you for reading.
...and specifically about how to fund the best healthcare for autistic people.
Looking for excellent #NHS training on autism, from expert professional trainers? Examples -
@AutismOxfordUK for training in central England
@AT_Autism for Synergy bespoke training nationally & internationally.
@AutPrideReading for Berkshire training.
(I work for and with all three teams, with fantastic fellow trainers and consultants)
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