Rose Matthews Profile picture
Oct 29, 2022 23 tweets 5 min read Read on X
#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/
A great deal changed once I realised the impact certain situations were having on me.
Cause and effect were undeniable.
I have low toxicity tolerance.
I’d have destroyed my own well-being if I’d carried on putting myself through that.
I couldn’t bring myself to do it anymore.
4/
It wasn’t easy to take a step back career-wise as our household relied on my earnings.
Part-time and casual work was stressful in different ways.
Having a more limited income created additional challenges but it also gave me the breathing space that was essential for recovery.
5/
Nearly 4 years after discovering I’m autistic I’ve gradually inched back towards full-time work.
My career now consists of several strands woven together.
Workplace based employment, and WFH.
Autism-related work, and some which isn’t.
I have contrasting, complementary roles.
6/
Long challenging commutes are a thing of the past.
I work close to home with easy travel. Going into my two workplaces is something I look forward to.
I work half days in both.
This makes a big difference in managing my sensory environment and avoiding overload and overwhelm.
7/
For part of the week I’m an autistic at large, doing work unrelated to autism.
Being autistic is always relevant though.
My managers and colleagues know I’m autistic and are very understanding and supportive.
And I’m becoming a more effective self-advocate and autism champion.
8/
Self-employment is often suggested as a good option for autistic people, but it’s not without its challenges, especially in a recession.
It can feel extremely precarious.
Having enough income from regular employment to cover my basic living costs reduces anxiety considerably.
10/
There are aspects of employment I find really positive too, like being part of a larger organisation.
A substantive role means not having to worry about where the next piece of work is coming from, or if my contract will be renewed.
I lived on that knife edge for many years.
11/
I’ve ended up with a hybrid career - a baseline of substantive part-time employment, with time-limited, casual, self-employed roles on top.
This adds up to full-time employment, which is why I’ve been a bit quiet on Twitter lately.
I’m pacing myself carefully while I adjust.
12/
I’ve gone from being semi-retired to fully employed, something I never expected to happen when I was in the depths of burnout.
This has been driven partly by personal circumstances, and partly by irresistible career opportunities.
I’m only doing work that I really want to do.
13/
Employment has so many different facets. We tend not to hear a lot about the positive ones.
I know people who are still working part time in their 70s, not because they have to, but because they chose to.
Work can be enriching in a personal sense, and not just financially.
14/
Part of my own recent career decision-making has been to seek out roles I will be able to do in the long term, as I get older.
I don’t have many personal social contacts, so collaborating on tasks with people at work is important to my sense of human connection and belonging.
16/
It’s the kind of side-by-side working I’ve always enjoyed.
I finally understand another piece of advice from the psychologist, which was not to make autism my only interest.
While my research projects are still autism-focused, I have a much broader overall career portfolio.
17/
What enabled this to happen was partly the passage of time.
Somewhat annoyingly recovery from burnout can’t be hurried.
Seeing an autistic therapist was hugely important too.
I’ve got much better at assessing people and situations, and knowing how good or bad they are for me.
18/
Recognising the ongoing impact of menopause has been another very significant factor.
I couldn’t cope with the cognitive demands of my current roles if the debilitating symptoms of menopause hadn’t been addressed.
I am really thankful to have ended up getting good healthcare.
19/
For me there have been several different stages to recovery from autistic burnout.
To begin with, I was tentative about taking on challenges I would have coped with easily before.
I avoided putting myself under too much pressure, in case I ended up right back at square one.
20/
But then, as I gained in energy and confidence, I found myself in situations where I was being tested.
The challenge was to continue to apply the principles I’d learned to live by.
Removing myself from toxic situations, maintaining boundaries, and indulging my sensory needs.
21/
I’m much more articulate about being autistic now.
I can explain why it’s necessary to make a clear distinction between my work and my personal life.
I can ask for adjustments, so my senses don’t get overstimulated.
And I can explain what works best in terms of communication.
22/
I’ll always be susceptible to burnout, so I continue to practise self care.
Looking out for myself, and looking after myself, are necessary preconditions for me to be able to help other people.
I listen to what my mind and body tell me about tiredness, and the need for rest.
23/
I’m writing this thread about #autistic #burnout to encourage people who feel like they’ll never recover from it.
The same applies to people experiencing autistic #menopause - It has taken me many more years than I expected to get through them.
But here I am, emerging.
24/ 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 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
Oct 4, 2022
#Thread
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?
1/
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.
2/
This has turned out to be a profound discovery.
In many ways my late in life enlightenment has been life changing.
Someone I interviewed years ago said ‘once I understood I could cope’ (this has been true for me too).
An overarching theme is being able to make sense of things.
3/
Read 16 tweets

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