I’ve had my fair share of hospitals and major operations over my lifetime. So faced with another, life-changing op, during Covid, I felt relatively confident of coping.
I was advised by the autistic online community to inform the hospital that I was autistic. And how autism might affect me in hospital. I read all the information and blithely thought – I’m in a private room, surely it’ll be fine?
However I’d somehow forgotten how much previous coping had been due to massive support from my partner, family and friends.
Under stress I tend to shut down in both major (plummeting blood pressure) and minor (mutism) ways. Worse, I simply don’t hear what’s being said. Shouting makes everything impossible, it terrifies me. For instance, during labour with our three babies I shut down. I could only follow my partner’s quiet, encouraging instructions.
So! I was anxious this time, but I read the hospital’s info on the process and prognosis. And I felt confident about saying I’m autistic and get very anxious. Everyone smiled, “Don’t worry, everyone gets anxious. It’ll be fine”…
Followed by new, scary-to-me information like, “You must sleep on your back for at least 6 weeks / wear sensory hell surgical stockings for 12 weeks / be on a strong drugs regime despite a history of bad reactions”.
Do non-autistics somehow know that initial info is just a vague guide rather than definite? Or do they just cope better with new info? Without my partner’s support I just panicked. I wanted to run away. I didn’t, I froze and became silent. Tears poured down my face. And everyone was jolly and tried to reassure. By now I was way beyond that.
And so a three day stay turned into much longer because I couldn’t say what was the matter. My terrifyingly low blood pressure meant people shouting (‘Stay with us!!’ ‘Talk to us!!’) then endless monitoring and an oxygen mask. I could neither eat nor stop crying. By now I would have welcomed death.
Eventually I was allowed home where my partner was infinitely gentle, infinitely kind. I began to improve physically.
The emotional scars will take longer. When I see the surgeon (a genuinely nice bloke) I’ll take the Autism and Hospitals document provided by @autisticdoctor and give details of how a seemingly competent person was devastated by the lack of usual support.
I absolutely understand the need to exclude visitors from hospitals during Covid. But do we need to somehow reassess this where there is autism or learning difficulties?? Life saving / life changing procedures are incredible things – no-one would deny that. And NHS or private hospital staff are working brilliantly despite being under appalling pressure. What I’m questioning is: What if the mental cost of no extra support, to those who rely on it, is long-term PTSD?? I don’t know the answer. But I do know we need to make those who are in medicine aware that we are not average patients and the accommodations we need are vital to our health outcomes.
Otherwise it feels like screaming behind soundproof glass…