Thread by @NortherlyRose

#Thread
Apart from parenting children we rarely discuss being #autistic AND being a #carer.
I have personal and professional experience, and I’m interested in why it’s under explored.
Search ‘autistic carer’ and it’s assumed we’re the one being cared for.
#AutismAcceptanceWeek
1/

I’m focusing here on caring for relatives, family members, or friends.
It’s something many of us find ourselves doing with no training or support.
My first experience of being a carer was as a young adult.
Back then (the early 1980s) the term ‘carer’ hadn’t even been invented.
2/

One of the hardest things was being unrecognised and unsupported by professionals.
My partner had severe mental health issues and I might as well have been invisible.
Even after my existence was acknowledged no one had direct contact with me.
I was left to try and cope alone.
3/

It didn’t go well.
We were living in substandard accommodation, in a hostile environment, scraping by with hand outs from relatives which made my partner feel dreadful.
No dignity.
No respect.
No hope for the future.
A grindingly miserable existence one of us didn’t survive.
4/

I was unrecognised as an autistic person, and as a carer.
This lived experience shaped my career as a social worker, and as an academic.
I researched the experiences of family carers, and became a member of The Standing Commission on Carers (I was Rose Barton in those days).
5/

People in their 50s and 60s are most likely to be #carers.
This is an aspect of being autistic that has not been adequately acknowledged or researched.
We need to be more than just ‘aware’ of issues associated with ageing, autism and informal care giving.
#AutismAcceptanceWeek
6/

The barriers we face when trying to access services ourselves are replicated when we seek support for other people.
In spite of having worked for social services, charities, and the NHS, I still find it extremely challenging.
And it can sometimes be a matter of life and death.
7/

This morning I helped organise an urgent GP appointment, pre-operative assessment, and Covid booster vaccination for my partner.
When he becomes seriously unwell his life depends on me making the right decisions.
I gladly accept this responsibility, but I also need support.
8/

I had a carer’s assessment while I was waiting for my autism diagnosis.
Instead of sticking to a script, the assessor let me talk about everything that was going on for me, including what was happening at work.
They helped me to see what was wrong, and how I could address it.
9/

They also arranged for me to have some self care sessions (I chose aromatherapy massage from a long list of varied options).
I felt cared about and cared for, and that helped me to carry on being a carer.
Caring often becomes a mutual activity as couples age. It has for us.
10/

Things don’t always work out neatly though. While I was having radiotherapy on my hands my partner was being treated in a hospital hundreds of miles away.
I felt a bit miffed that he couldn’t be there for me, as well as feeling disappointed that I couldn’t be there for him.
11/

My autism diagnosis just before my 59th birthday was a complete revelation.
It’s obvious to us now why I need to rely on my partner a bit more at certain times.
He’s had a carer’s assessment too and, while we don’t get any regular support, we know who to contact in a crisis.
12/

There are so many aspects of being an older #autistic person that are almost completely unexplored.
We need more research on a far wider range of experiences so the right support and services can be put in place.
#AutismAcceptanceWeek
#AutismAcceptanceMonth
#ageing
#autism
13/

It was good to see ageing related questions in Chris Bonnello’s Autistic Not Weird @AutisticNW 2022 survey.
I hope other researchers follow suit, so that ageing-related autism research is no longer an under explored ‘niche’.
autisticnotweird.com/autismsurvey/
#AutismAcceptanceWeek
14/end

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