Rose Matthews Profile picture
Autistic activist, writer, researcher, and creative thinker. #Neurocosmopolitan @Autism_R_and_D. @SensoryJoy. (they/them)
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Nov 16, 2022 8 tweets 7 min read
I’m celebrating the 4th #autieversary #autiversary of getting my v late in life #autism diagnosis today.
Here’s a thread of some of the #threads I’ve written along the way, starting with my 1st anniversary when I wrote about my beloved dogs.
1/ Nearly two years on from my #diagnosis I wrote about how much I had discovered about #autism and myself.
Oct 29, 2022 23 tweets 5 min read
Rebuilding a career after a late in life autism diagnosis.
Personal reflections of a very late discovered #ActuallyAutistic person, 4 years on.
Burnout was a factor in me finally finding out I was autistic.
I’d become overwhelmed and exhausted.
I’d drifted to a halt, and then couldn’t get going again.
I was overloaded by being bullied at work, being in perimenopause, unresolved trauma and my partner’s serious illness.
Oct 14, 2022 21 tweets 5 min read
Why it’s sometimes difficult to know how unwell I am.
A personal autistic perspective.
I’ve been feeling rotten since Sunday, with some kind of respiratory illness.
After 3 years of respite from colds and flu it came as a bit of a shock.
I haven’t had Covid yet either.
I wasn’t too worried to begin with, as my partner was ill before me.
After 2 or 3 days he started to feel better, and I assumed I’d be the same.
Unfortunately I’ve been getting steadily worse.
Less energy.
More coughing.
Less desire to eat.
More sleeplessness.
Strange pains.
Oct 4, 2022 16 tweets 5 min read
Several people asked me why I was bothering to get an autism assessment when I was almost 59.
My children were adults, my career was on the wane, I had already lived a lot of my life.
What difference would it make for me to discover that I was #ActuallyAutistic then?
I knew I was autistic long before the psychologist told me.
I’d met other autistic people in an online forum and recognised myself.
It was undeniable.
I awaited the result of my assessment with trepidation simply because I knew some people wouldn’t accept self-identification.
Sep 24, 2022 14 tweets 5 min read
The importance of protesting.
A personal (late recognised) #ActuallyAutistic perspective.
I struggle to understand why we’re being so acquiescent when the government’s taking a wrecking ball to the economy, social justice, and the natural world.
We should protest more.
I was brought up not to make waves, to be obedient and law abiding.
My instinct was always for justice and truth though, and the importance of protesting soon dawned on me.
Children are subjected to various sorts of tyranny.
Protesting is one of the ways we protect ourselves.
Sep 21, 2022 23 tweets 5 min read
Needing my own space.
The personal reflections of a very late recognised #ActuallyAutistic person.
Discovering I was autistic at 58 led me to see many things that had happened in the course of my life differently.
With hindsight I was obviously autistic from birth.
I was a ‘fussy’ baby who wouldn’t feed, and who didn’t like being held either.
My boisterous toddler brother was too much for me so I was left on my own in my pram at the end of the garden.
What I’d previously thought of as exclusion must have felt like wonderful liberation.
Sep 15, 2022 21 tweets 5 min read
When a medical appointment ended up going smoothly.
A personal (very late discovered) #ActuallyAutistic perspective.
It didn’t begin well.
I got a phone call from the GP receptionist when I was on the bus.
I answered in case it was urgent, but soon became confused.
“You’re still booked in to see the nurse on the 19th” she said.
I agreed and explained that my original appointment had clashed with work commitments and been rescheduled.
“But you’re still booked in on our system”
By now I was getting the message that something was wrong.
Sep 10, 2022 12 tweets 7 min read
It’s almost 12 months since I adopted Waffle the dog, which means it is nearly a year since Izzy my Border Terrier died.
There’s no schedule or timetable for grieving the loss of loved ones, and no difference for me between those who have 4 legs and 2.
1/ Border Terrier licking an i...ImageImage The photo of Izzy licking an ice cream was the last photo my father-in-law ever saw.
My partner was called to the hospital where his Dad was dying.
Izzy and I stayed at home, waiting for the inevitable news.
A few weeks later we went out to sea to scatter some of his ashes.
2/ Border Terrier wearing blue...
Sep 9, 2022 13 tweets 4 min read
The day before yesterday my partner brought over a newspaper he was reading.
He showed me a photo of the Queen extending her hand to Liz Truss.
It was the hand of a very elderly person.
The skin was delicate and discoloured.
I wondered why he was showing it to me.
We discussed the Queen’s age and health briefly, then the business of the day resumed, and we talked no more about it until yesterday afternoon.
Once my online course had ended, I realised that
BBC One was broadcasting continuously about the Queen’s ‘serious health concerns’.
Sep 7, 2022 12 tweets 3 min read
I am giving myself a virtual gold star for going to the dentist today, even though I only half went!
I’ve been waiting for this dental appointment for several weeks.
My usual dentist couldn’t complete a root canal treatment and referred me to the dental hospital.
The wait is many months long, so I had arranged to see another local dentist who specialises in root canal work.
Sep 3, 2022 17 tweets 4 min read
Death and dying are hardly addressed at all in autism research, except for suicidality.
How can we prepare for something there’s so little information about?
And what insights and evidence can those who provide end of life care for #ActuallyAutistic people refer to?
The relative invisibility of older autistic people (many of whom are unrecognised) helps to explain this gap.
Most research and policy making is focused on children, young people, or working age adults.
Death and dying aren’t unique to ageing but it’s an inevitable conclusion.
Jul 15, 2022 26 tweets 6 min read
What therapy has taught me.
After several unsuccessful attempts to resolve some painful and deep seated issues I finally found a therapist I had the right kind of understanding and rapport with to address this effectively.
They were autistic too.
We had lots in common.
Pacing was important.
There were places I wasn’t ready to go at the outset.
Things evolved gradually.
Situations occurred in my life that led to us exploring specific issues.
It felt natural not forced.
Everything happened in its own good time.
Some things resolved themselves.
Jul 10, 2022 16 tweets 4 min read
My gradual liberation from self-consciousness.
A personal, very late recognised, #ActuallyAutistic perspective.
What many people (me included) took to be ‘extreme shyness’ in my childhood, youth, and early adulthood was actually acute self consciousness, and a fear of being judged by other people.
Jun 28, 2022 15 tweets 5 min read
A personal (very late diagonised) #ActuallyAutistic perspective on #change.
For me coming to understand myself better as a result of a very late #autism diagnosis led to some very gradual but significant changes.
Three and a half years on things are very different.
This isn’t the result of a ‘throw everything up in the air and see where it lands’ kind of change, although I’ve done a fair bit of that in my time.
What has been happening is that I have been getting to know myself - the truly autistic ‘me’, not the people pleasing version.
Jun 19, 2022 17 tweets 4 min read
The fact that I’ve got a shocking hangover today has prompted me to write about my personal experience of drinking #alcohol as a very late diagnosed #ActuallyAutistic person.
Apart from the last week, for eight months I haven’t drunk any alcohol at all.
It wasn’t a big deal. My partner’s health condition is sensitive to it so he gave it up, then I did too.
I’ve enjoyed drinking no alcohol beers since then, and occasional no alcohol sparkling wine.
Jun 18, 2022 7 tweets 2 min read
I’m supporting a family member through a crisis at the moment.
In doing so I’m aware of just how much my autistic strengths such as sustained focus, the ability to analyse complex situations, and creative problem solving are helping to resolve matters.
#AutisticPrideDay I’m also aware that my autistic sense of justice, my openness, and my hyper-empathy sometimes help, and sometimes get in the way.
I’m very proud of what I’ve achieved this week, including the fact that I’m able to state this without worrying about it coming across as immodest!
Jun 12, 2022 13 tweets 4 min read
Being part of an autistic #community in my own neighbourhood.
A personal #ActuallyAutistic aspiration.
Like many late discovered autistic people I found my ‘tribe’ online.
Just before my autism assessment feeling accepted in an online forum of autistic people persuaded me I was on the right track.
Now my main connection with other #ActuallyAutistic people is through @Twitter.
Jun 11, 2022 29 tweets 10 min read
My #autistic #menopause with and without hormone treatment.
It’s 12 days since my GP told me I had to stop using hormone treatment patches for the next four weeks.
I was horrified.
It’s difficult to describe just how bad things were before I started using HRT patches.
I tried bargaining for a different approach, or a notice period to prepare myself, but it was futile.
My GP emphasised that it was “only for four weeks”.
I reminded her how bad things had been before I started using the patches.
It was non-negotiable so we agreed to disagree.
Jun 7, 2022 16 tweets 4 min read
Anatomy of an #autistic meltdown.
A personal very late diagnosed #ActuallyAutistic perspective.
Understanding why something happens is important to me.
But that doesn’t make it preventable.
What goes up (stress and over stimulation) must eventually come down.
I’ve had an extraordinary few weeks in terms of anxiety and uncertainty.
The helplessness of standing by has been extremely stressful.
I’ve taken as much pressure off myself as possible, and increased ‘self-soothing’, but cracks in my coping ability eventually started to show.
Jun 3, 2022 22 tweets 6 min read
Learning to take care of myself after a late-in-life autism diagnosis.
This is a good day to write about coping precisely because I’m struggling.
When things go well, it’s easy for platitudes to slip off the tongue.
But I’m here now reminding myself what I need to do.
I love alliteration and a lot of my coping mechanisms just happen to start with p.
The first cluster involves pacing, and avoiding undue pressure.
I try to achieve this by prioritising and doing things more efficiently.
This ‘expands the pie’ of energy that’s available to me.
May 20, 2022 11 tweets 3 min read
Changing the habits of a lifetime - reflections from a very late discovered #ActuallyAutistic perspective.
When I ran workshops on change I sometimes asked people to cross their arms or legs as they usually would, then try to do it the opposite way.