Rose Matthews Profile picture
Jun 3, 2022 22 tweets 6 min read Read on X
#Thread
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.
1/
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.
2/
Achieving this depends on several factors.
Playing the scene through to the end helps me recognise where things are heading.
Predictability is a double edged sword. Patterns can be reassuring but they also flag up the need for preemptive action.
Prevention is better than cure.
3/
Planning ahead and careful preparation reduce the likelihood of problems occurring, but demands still pop-up unexpectedly, some of which I may need to push back against.
Trusting my own perception of how close to my ‘coping limit’ I am is a particularly important part of this.
4/
I’m trying to let go of perfectionism, procrastination and prevarication.
Some people might consider these a form of rumination.
Sitting on fences is painful and exhausting so I’m attempting to do less of it.
If I’m not sure what I want to do, tossing a coin will soon tell me!
5/
Sometimes I wait for someone else’s permission, instead of acting on what I already know.
People-pleasing is pointless if I’ve no idea what the other person is thinking, and they’re unwilling to say.
I try to keep on asking myself the question: “how does this make me feel?”
6/
Therapy is a sort of psychological pain relief.
It helps me understand what hurts and why.
I can’t cope with office politics or hierarchical ‘pecking orders’ without getting damaged, so I don’t even try.
I had enough of that in my peak career years and I still bear the scars.
7/
Which brings me onto positionality (‘how differences in social position and power shape identities and access in society’).
This helps to determine the options that are open to us.
Nothing is completely pre-determined of course but privilege often plays a significant part.
8/
The problem with privilege is that very few of us admit that we have it.
I do. Far less than I used to, but still more than many.
Being in a relatively advantaged position has practical implications.
Privilege could expand future possibilities for me, provided I permit it to.
9/
I was struck by the notion of the scarcity mindset in a recent piece by @ThatKerryHudson.
This may carry on affecting us profoundly, long after we should feel secure.
Those of us who once fell apart may struggle to get over how precarious life is if you’re #ActuallyAutistic
10/
#Health wise I tend to operate according to precautionary principles, trying to prevent physical problems from occurring, or worsening, by staying tuned into all of my senses, especially the ones I find particularly difficult to read, like #interoception and #proprioception.
11/
Difficulties tend to arise when some kind of external intervention is required.
Then the need to perform the role of a subservient and grateful recipient of expert medical treatment often lets me down.
I’m far too opinionated about what I want, having done extensive research.
12/
‘The Presentation of Self in Everyday Life’ by Goffman is one of my favourite sociology books.
A whole cluster of things under ‘authenticity’ include ‘pretending less to myself and others ’, ‘finding my true purpose in life’ and ‘being in places where I can really be myself’.
13/
Given the amount of prejudice about autism in society, perspective shifting is necessary to feel pride in being autistic.
Not the exceptional, high-achieving, over-compensating person I was once drawn to being, but an ordinary, contented, satisfied, run-of-the-mill person.
14/
Being accepted for who we are shouldn’t require us to be exceptional.
I wince at all of the employment materials highlighting how much additional value an autistic employee would bring.
I long for the day when conditions are such in workplaces that we can simply blend in.
15/
It’s a shame that for many autistic people trying to cope in neurotypical-dominated work settings, employment is a damage limitation exercise.
I’m incredibly fortunate to have liberated myself from those kind of situations as they can cause us immense and long-lasting harm.
16/
In work terms I’m best suited to projects with quite clearly defined goals and a degree of flexibility in how to achieve these.
It’s obvious to me now that ‘positivity’ depends on me having room in my life for joy.
Pleasure can easily be extinguished by hostility or toxicity.
17/
I’m not an overly competitive person, so that kind of dynamic tends to make me unhappy.
If I go out of my way to do something well it’s for the joy and satisfaction of a job well done, not to compete with anybody.
Learning how I prefer to work has taken me a very long time!
18/
The slow and steady nature of my progress towards self-enlightenment is an overarching theme.
I thought I could ‘fix’ things quickly once I discovered that I was autistic, but it’s 2 steps forward, 1 step back.
Patience doesn’t come naturally, so I’m relying on perseverance.
18/
I know why today has been a difficult day and what I can do to help myself recover.
Becoming overwhelmed was almost inevitable given everything that’s been going on.
The basic architecture of my life is a whole lot better now, but feelings still blow in and out like weather.
19/
As I’ve said many times before, one of the things that really helps me to cope is #ActuallyAutistic Twitter.
I get so much peer support in the form of helpful suggestions, reassuring encouragement (and photos of cute creatures!)
Thank you all for your wisdom and kindness.
20/end
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More from @NortherlyRose

Apr 3
#Thread
#Autism awareness and acceptance really matter because stigma, prejudice, and lack of trauma informed, ‘experience sensitive’ approaches perpetuate structural inequalities and injustices.
In my locality #SocialCare needs of autistic adults come under the #MH service.
1/
I saw an unqualified Assistant Psychologist in the #CMHT after my #autism diagnosis.
I wanted help with the existential crisis of late autism diagnosis but ended up being gaslighted.
I realised what was going on and discharged myself after explained what iatrogenic harm meant.
2/
A few months ago a combination of factors (none of them to do with mental health) meant that I needed social care support.
Because I am #Autistic I was told that my assessment would be carried out by the MH team.
I was so traumatised by my last contact with them I declined.
3/
Read 13 tweets
Feb 18
#Thread
Adjusting to a very late in life #autism discovery.
How my life has changed 5+ years on.
Like many #Autistic people I had experienced repeated episodes of #burnout and #trauma.
By the time I reached my late 50s I was exhausted.
I had no energy to get going again.
1/
This quiet breakdown could easily have gone unnoticed or been explained by a number of other things.
I’d always been quirky and different, a highly sensitive, deeply empathic person.
My distress could have been attributed to a personality issue, or to anxiety
and depression.
2/
Through good fortune and serendipity I found my way to a service that helped me to start making sense of my life.
The process of acceptance, adjustment, and self-advocacy has continued since then.
It’s not enough for me to adapt, other people need to make accommodations too.
3/
Read 16 tweets
Jan 2
I feel blessed to have reached the age of 64 with much of my life still intact.
When everything began to unravel in my 50s it wasn’t clear why.
My career (which had been reasonably successful, if somewhat disjointed) got derailed.
My personal life started falling apart too.
1/
Without understanding why this was happening, it would have been impossible to remedy the situation.
I’d have carried on pulling at the loose threads until there was nothing left at all.
Discovering that I was #Autistic gave me the answers I needed to start to repair my life.
2/
What needed fixing wasn’t me, it was my living and working environments, and communication between me and other people.
Although I’d realised that interpretation and translation prevented misunderstandings, I hadn’t recognised my language and culture were distinctly Autistic.
3/
Read 7 tweets
Nov 16, 2022
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.
#ActuallyAutistic
#AutisticTwitter
1/
Nearly two years on from my #diagnosis I wrote about how much I had discovered about #autism and myself.
2/
On the second anniversary of my #autism diagnosis I wrote a thread about #bullying (not realising that it was my #autieversary at the time). It was very appropriate though, as bullying and abuse have had a huge impact on me, especially in adulthood.
#ActuallyAutistic
3/
Read 8 tweets
Oct 29, 2022
#Thread
Rebuilding a career after a late in life autism diagnosis.
Personal reflections of a very late discovered #ActuallyAutistic person, 4 years on.
1/
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.
2/
A demanding new job immediately after my diagnosis didn’t kickstart recovery from burnout like it would have done previously.
What the psychologist had told me about taking ‘baby steps’ was true, even though I didn’t want it to be.
I finally realised I couldn’t afford not to.
3/
Read 23 tweets
Oct 14, 2022
#Thread
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.
1/
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.
2/
I’m almost always in some kind of pain so that in itself isn’t a reliable indicator of being unwell.
Nor is severe fatigue, which occurs so regularly it seems normal.
I rely on objective symptoms like fevers, rashes and swellings.
Tests are a bonus, if they are available.
3/
Read 21 tweets

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