Thread by @NortherlyRose

#Thread
A personal #ActuallyAutistic perspective on getting urgent #healthcare for someone in a medical emergency, and being an autistic ‘#carer’, or ‘caregiver’.
#autism
1/

There’s a liminal state between life and death I encountered once during childbirth.
It didn’t feel survivable, but it was. And when it was over I lay there exhausted like someone who’d been swept out to sea, then washed back in on the tide.
2/

Decades later my partner had sudden respiratory failure.
I could feel him slipping away.
His grip on life depended on me finding the right words to persuade the 999 operator how ill he was.
Even then they could not get there quickly enough, so I bundled him into the car.
3/

It was a baking hot day with heavy traffic and the only option was to head across town.
We got stuck at traffic lights and he wound down the window, gasping in traffic fumes.
I’ve never driven with such intense concentration. Thinking several steps ahead.
What would I do ‘if’?
2/

As we approached the hospital I told him the plan. I’d drive right up to the A&E door.
Once in the nightmare wasn’t over.
They kept on asking questions even though he couldn’t breathe.
Name, date of birth, address…there was no time for this.
I looked round the room in panic.
3/

An elderly woman who was waiting there saw the look in my eyes.
“Go and bang on that door” she said, and I did.
And through the pane of glass I saw someone in scrubs walking towards me.
They opened the door and I said “he can’t breathe, he needs help” and they let us through.
4/

I thought he’d get treatment, but we were put in a cubicle and someone else started asking him questions.
Name, date of birth, address…
So I said “he needs oxygen now, he can’t breathe” and they said “oh yes he can, his chest is going in and out”.
And I thought he would die.
5/

Somehow in the confusion they reversed his first and last names. I didn’t say anything because time was running out.
He punched the wall in quiet desperation. He could no longer speak.
I texted my sister who trained as a nurse. She messaged back “get them to check his SATS”.
6/

And finally they did, and he was rushed into a treatment bay, where he was given oxygen and a nebuliser.
I sat there in shock. Replaying his collapse, the 999 call, and the dash across town.
The ambulance crew who’d taken him to hospital a week before had told me not to wait.
7/

He’d already had 5 blue light calls in 5 weeks. No one knew why his breathing kept on failing.
One of the paramedics said “he’ll have to get ill enough to be admitted before they do tests and find out what’s wrong”.
And that was what happened (although he nearly died first).
8/

I know how close he came to dying because when I went to fetch some water I overheard the staff handover.
He was in hospital for a week. They ran all kinds of tests and diagnosed asthma.
It took another episode of respiratory failure and hospital admission to diagnose AERD.
9/

AERD (Aspirin Exacerbated Respiratory Disorder) used to be known as Samter’s Triad.
It’s quite rare.
I got there slightly ahead of the consultant by reading up his symptoms and possible reasons for late onset asthma.
It was a relief to know. There’s no cure only treatment.
10/

A drug that has good results isn’t available in the UK so he has regular operations, after which there is some improvement, then a gradual decline.
The pandemic made everything more difficult.
It was impossible to coordinate procedures at two hospitals in different regions.
11/

But this time round it looks like it will be possible.
This incurable debilitating long term condition is something he has had to learn to live with.
It helps that he is in touch with others who are affected by it.
I try to empathise but only they can really understand.
12/

Like many family members I hesitate to call myself a ‘carer’ because the support I provide fluctuates over time. And it’s intrinsic to our relationship to care for each other.
I’m constantly monitoring him, looking out for signs that he may need medical advice or treatment.
13/

When there’s any kind of health crisis I have to advocate for him.
This feels like a huge responsibility, much more so than advocating for myself.
Such a lot depends on the person I get on the other end of the line (there’s usually no alternative to making contact by phone).
14/

A week and a half ago I was fortunate to speak to a medical secretary who went out of her way to help us.
She emailed the consultant with my concerns and by lunchtime my partner got a text with a date for his operation.
I was equally lucky when I phoned the second hospital.
15/

It was late in the afternoon, and the clinic staff had all gone home.
I couldn’t phone back the following day because I was going to a funeral.
The admin person I spoke to sent an email for the clinic to pick up.
I was so grateful that I didn’t even mind being called “lovey”!
16/

Everything went well yesterday.
My partner had very low SATS levels after his operation so he had to be on oxygen for a while.
That delayed his discharge by a few hours.
I was so tired by yesterday evening I half hoped they’d keep him in overnight, like they did last time.
17/

He felt quite poorly and wasn’t sure he was ready to come home. But they were keen to discharge him and home he came.
I didn’t get written instructions on what to do in the event of excessive bleeding. They ran through it on the phone, but I said I’d like it in writing too.
18/

I explained why, and told them that I’m autistic.
Written information is very reassuring when I am stressed, as I was yesterday.
It saves me from having to remember lots of things, and worrying there might be something I’ve forgotten.
A small but important accommodation.
19/

It is often difficult for people to understand why concessions like this might be needed.
I’m articulate and I seem to comprehend what they are saying to me.
I hope that as understanding of autism improves simple adjustments like this will be made as soon as we request them.
20/

Communication is vitally important in the affective coordination of care between hospital and home.
We’re all on the same side, doing our best to help someone recover.
But it often feels as if some team members are more important than others.
Carers’ needs tend to be ignored.
21/

If you Google #autistic and #carer you quickly realise that those of us who are #ActuallyAutistic are assumed to have a carer, not to be one.
We need more research on the experiences of autistic people who are #carers or #caregivers (other than in a parenting capacity).
22/end

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