Rose Matthews Profile picture
Apr 16, 2022 26 tweets 10 min read Read on X
#Thread
The importance of what’s ‘on the record’.
Personal reflections from an #ActuallyAutistic perspective.
I’ve been thinking a lot about #testimony and #truth
Zoe Zaremba’s death was investigated by a coroner this week, and the many injustices she suffered were recorded.
1/
It’s a hollow kind of victory when the truth only comes out after someone dies, but it still matters that the truth prevails over lies.
Zoe fought so hard for justice during her life, and the fight goes on, galvanised by an inquest which recorded just how badly she was failed.
2/
The fact that the mental health trust was only properly held to account after Zoe’s death highlights a significant problem.
Being believed, and getting justice, can be incredibly difficult if you happen to be #ActuallyAutistic
#AutismAcceptanceMonth
#AutismAcceptance
#autism
3/
Zoe was very clear about what the issues were.
She had considerable insight, as well as capacity.
But the fact that Zoe was autistic, and had been misdiagnosed as having a personality disorder, meant that what she said was seen as unreliable.
This was ‘testimonial injustice’.
4/
Being seen as an unreliable witness about your own lived experience is one of the most damaging things a mental health service can do to someone.
I should declare a personal interest here.
Just before and after my #autism diagnosis I tried to access #therapy for past #trauma.
5/
I was under the same mental health trust as Zoe.
My experience mirrored hers in that I acquired a label of EUPD and found out about it accidentally.
This was devastating. Not because having a personality disorder is bad but because people who have them are treated appallingly.
6/
As a former mental health social worker I had witnessed this myself.
And I knew that even ‘complaining’ might be taken as further evidence of my EUPD.
I was faced with a terrible dilemma, but like Zoe I disputed the ‘diagnosis’, and demanded to know how I had acquired it.
7/
The fact that I’d been a mental health professional seemed to influence things.
I was too upset to speak, but my partner phoned to complain and they quickly backtracked.
He was told my case notes were typed over someone else’s and parts of the original record weren’t deleted.
8/
The casual incompetence of this appalled me.
I was also somewhat sceptical.
Were they simply backing down because they’d realised who they were taking on?
I was tipped into crisis by this incident.
It caused me iatrogenic harm.
But I stopped short of making a formal complaint.
9/
That was because I’d met other people on Twitter who’d been through the complaints process with the same Trust.
They warned me of the likely consequences of a formal complaint and I didn’t feel sufficiently robust so soon after my autism diagnosis.
But I couldn’t do nothing.
10/
I had to put something on record to try and prevent the same thing from happening to other people.
So I contacted the Clinical Commissioning Group my CMHT came under.
I had a long conversation, which became a statement.
Last week I read this again for the first time in ages.
11/
This statement covers the whole saga of my initial referral to #IAPT by my GP, and subsequent ‘escalation’ to the #CMHT because IAPT had no insight into autism.
I was only seeking therapy for past trauma.
I ended up with a false record, feeling like I was stuck in a quagmire.
12/
My patient record got corrected almost immediately, but it still caused significant harm.
Zoe battled for 19 months to get her EUPD misdiagnosis amended.
She was trapped in a snare where the harder she struggled the more damage was done.
Her pain and anguish are unimaginable.
13/
Even after Zoe was assessed by a personality disorder specialist who decided that she did not have one, the community team asked for this decision to be reviewed.
EUPD is an incredibly sticky label and difficult to get rid of.
It determines how you’re seen, and get treated.
14/
The cool detachment and lack of empathy I experienced in sessions with a psychology assistant were consistent with having an EUPD label.
I wonder if its appearance in my notes really was an admin error?
I’d better not dwell on that too much in case they think I’m paranoid.
15/
It’s hard not to be suspicious of a service that struggles to be truthful.
Zoe’s mum said she was slandered in her notes, lied to and about, and mistreated by staff. She’d said "I cannot live in a world full of lies”. Truth and honesty were the most important things to her.
16/
Openness and transparency are important aspects of justice so it is not only done, but seen to be done.
The coroner reached the conclusion that:
"Zoe died by suicide contributed to by actions and inactions of mental health clinicians entrusted to keep her safe…”(continued)
17/
“…in a care system which was underdeveloped to manage an autistic individual with complex needs".
He also concluded that Article 2 was engaged in Zoe’s case.
Article 2(1) of the European Convention of Human Rights states: “everyone’s right to life shall be protected by law”.
18/
The coroner found that the positive duty and the operational duty to protect Zoe's life and provide her with adequate care had been breached by the mental health trust.
I’m pleased to say the coroner’s conclusion isn’t the end of the matter but the start of another process.
19/
The coroner stated that he will be sending a Section 28 report to the secretary of state, the minister for mental health, the North Yorkshire CCG, and NHS England.
The purpose of sending a Section 28 report is to prompt action to prevent future deaths.
legislation.gov.uk/uksi/2013/1629…
20/
The coroner said that he would write to the mental health trust concerned suggesting that they collect and analyse data on #ActuallyAutistic patients.
The coroner also said he would recommend that all autistic patients who are labelled with #EUPD are reviewed and reassessed.
21/
Zoe was misunderstood and mistreated simply for being #autistic.
Her need for time to process information was misconstrued by the mental health service as being uncooperative.
Zoe was an intelligent, insightful woman who saw all too clearly the injustice she was subjected to.
22/
Zoe deserved so much better than this.
My experience and that of other autistic people shows that her experience wasn’t unique.
It’s the stuff of nightmares to seek support and be harmed by those who should be helping you.
One of the biggest hurdles is simply being believed.
23/
Zoe’s mum Jean gave such powerful testimony about her daughter at the inquest and to the media.
Zoe’s friends attended the hearing and faithfully reported what was said.
These were acts of great love and integrity.
It’s important to set the record straight.
#AutismAcceptance
24/
As you can see from @Shame_On_TEWV’s Twitter threads #ZoeZaremba’s inquest explored what happened to her in detail.
The coroner also touched on how #MentalHealth services respond to #autistic people more generally.
This has to make a difference.
We must make sure of that.
25/ 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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