#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/
After a period of prolonged introspection, when I re-examined what had happened to me in the past, I finally came to terms with some traumatic things.
They lost their sting.
That in itself was liberating.
I’m so much better equipped to protect myself from harm, and drama, now.
4/
I’ve begun to repair the relationships which matter most to me.
I’ve begun to pick up the threads of my career.
I’ve begun to self-advocate more effectively in health care settings.
I’ve begun to practise self-compassion and self-care.
This has been a late in life revelation.
5/
That is not to say that my struggles don’t persist.
The world is quite poorly designed to meet autistic needs.
I have to seek out people and places which are relatively friction free.
This limits opportunities.
And any amount of social interaction requires some recovery time.
6/
But my life is immeasurably better simply for knowing that I’m #autistic.
I no longer agonise over why bullies sometimes target me;
why miscommunication occurs;
why I get overwhelmed and exhausted; why I need time alone; why I’m sensitive; why I have few friends.
This is why.
7/
It’s so blatantly obvious I wonder how I missed it.
Once the veil was lifted things began to change, over time and with considerable effort.
I understand why some people choose not to take this course.
Things had to be undone before they were rebuilt.
It got chaotic and messy.
8/
It’s still not safe to be openly autistic in some personal and professional settings.
I’m privileged in not having to conceal who I am at home, or work.
There can be adverse consequences, but it’s liberating not having to worry about my mask slipping, or developing cracks.
9/
When I meet people who think they may be #autistic a conversation about #assessment is sometimes sparked.
Self-identification is valid, and #diagnosis doesn’t often give access to resources.
Recognising that we’re autistic is the important thing.
And we can do that ourselves.
10/
I also understand and respect people who choose not to discover that they are autistic, or not to disclose it to others if they do.
Most societies are still very ableist.
There are likely to be repercussions.
It was easier for me because I had less to lose so I could risk it.
11/
There’s a lot of privilege involved in getting an autism assessment in the first place and then making the lifestyle changes that are needed to live comfortably and thrive.
Many additional pressures exist for people who live in poverty or who have caregiving responsibilities.
12/
Women are often multiply disadvantaged by not being recognised as #autistic, while having fewer resources and greater demands.
It’s not surprising that they end up in crisis.
Even then they may not be recognised as #ActuallyAutistic, unless they work it out for themselves.
13/
Discovering that I am autistic has made all the difference in the world to me.
But it might easily not have happened.
What if an ex-colleague hadn’t emailed me about her diagnosis?
What if I hadn’t been able to bypass my GP and get assessed privately?
What if I’d never known?
14/
I’d still be scared to look over my shoulder at the past.
I’d still burn with shame about situations where I was abused.
I wouldn’t have developed pride in my autistic identity.
I wouldn’t have found ways of living more comfortably in the world.
I wouldn’t be writing this.
15/end
#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/
#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/
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/
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/
#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/
#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/