I am diagnosed with the shutdown presentation of post-traumatic stress disorder (PTSD), bipolar 1 disorder and mild social anxiety disorder, which multiple strangers online confuse with autism. I have had a lot of abuse online because I no longer call myself autistic, after assessment for Autism Spectrum Disorder (ASD).
I have difficulty with communicating with words. Below is an extract of transcript from a recent video, when I was trying to speak, while dissociating (PTSD):
Processing intense emotion
The video below was when I was in a mixed mood episode, having difficulty with my cognition and needing to process some intense emotion. It is very challenging for me to speak as my cognition is impaired, especially when I am dissociating.
In the video (which split into two parts), I subconsciously fidgeted with a symbolic object (an egg made from paua shell). Some people call the repetitive movements 'stimming.' I mostly talked about the harrassment I had for not calling myself autistic and my opinion that self-diagnosis is unwise.
All I knew going into recording video (fully improvised) was that I knew I needed to hold the egg. This helped ground me when I was dissociating, so I could keep speaking. It also helped ground me to express intense emotion, mainly anger, mostly as movement rather than as emotion. So I seemed relatively calm in the surface.
My speaking is different from my writing in my books, as I can edit writing until I am happy with it. Below the video is just some of the video transcript, which shows how I go off on tangents and have trouble with fluent speech. The videos are captioned.
The recording split, so the rest of the recording is at the end of this blog post.
autism vs bipolar, PTSD - Video part 1
selected transcript - Video part 1
I find writing and speaking very very hard...um...
because my mind dissociates or goes very fast or shuts down.
I was, this is what I kind of want to talk about...
for most of the time that I've been on Twitter, which
I now deleted my account, um, I was harassed by people,
because they kept insisting that I'm autistic
I've talked about this a few times before, because the way that
I seem to them meets what they say autism is
the online version of the neurodiversity version.
Now where was I going with this?
I have been harassed so many times and then, if
I express a different opinion it's like
but anyway, um, what was I trying to say?
I do this and then Iose my train of thought...
in my memoir but I don't wanna go into all the detail because
it is ssso, um, traumatising but anyway these people
they say that self-diagnosis is valid, and some of them
probably would meet criteria for a diagnosis of some sort
but the ones they want to go for are number 1. autism
2. ADHD. They're very stigmatised in their comments about
bipolar. Um, the narrative is that females are misdiagnosed with
bipolar and borderline personality disorder, also called BPD,
and must really be autistic instead. Now this narrative is
dangerous because, um, I am diagnosed, I'm just going off
another tangent here. I'm diagnosed by clinicians,
psychologists and psychiatrists, cross-discipline, actually two
countries because I had a breakdown in Australia before I
came back to New Zealand.
I didn't "doctor shop". These, idiots, said, that
doctor-shopped two countries, [sigh] you don't doctor shop
when you end up in a psych ward,
you just get what you're given, and,
I fidget with things to help ground me to keep me here
because when I'm getting triggered [slap sounds - egg ornament against palm of hand]
my mind goes to go off away. [louder slapping]
and I'm also underneath it all angry about this [louder slapping].
This is anger for me [intense, controlled voice, slap sounds].
It was a really rough ride finding, what helped me, they don't
cure bipolar, they only help manage it. [slapping egg]
What they do is they try and say, 'oh no, you don't have bipolar,
you're misdiagnosed you're really autistic' guess what they do
for autism assessed in New Zealand, here and other places,
absolutely diddly squat, because the narrative has been, that
'oh, it's no different from like homosexuality' is the comparison.
'It is an identity - it is just how you were born' so that does not
help people who do... have... impairment in New Zealand my
clinicians said that you don't get [harder slapping]
diagnosed without impairment.
Which makes sense, because if you go on traits only everyone
on the freaking planet would be diagnosed with something
which then makes it completely meaningless watering it down
for people who do suffer. [intense pain emotion]
For people that do need assistance,
financially, whatever. Okay? So these quirksters really
piss me off.
Blame it on one society. Now, where is I going?
Okay, trying to get back to this [slap quieter]
When I feel anger by the way I don't usually feel it strongly
as emotion. They'll say 'oh but that's autism'. It's actually
my PTSD. People were confusing my autis- with autism
P.. PTSD. 'Oh you don't have eye contact with the camera,' um,
they've decided that;s social anxiety mostly it's also my PTSD
this is a paua shell egg that I painted with nail polish
I get, mood episodes with bipolar, [sigh]
and it's nearly always set off by PTSD.
It's only sometimes I, I experience intense emotion. Usually in
mood episodes. Most of the time my emotions shut down
cause so triggering it's hard for me to process stuff so that's
why I do it creatively with my painting etc even cutting stuff up
My clinicians, my psychologist have talked to her
several times she's seen me for every two years, weekly
trauma expert, plus I was diagnosed PTSD by another
psychologist who sent me to the trauma one, she did the
ASD assessment Autism Spectrum Disorder,
she said I have traits but I don't meet the full criteria and
now I understand it I agree okay so,
so I'm considered to have subclinical traits of both
autism and ADHD but [sigh] my psychologist said
there's no need to diagnose on that because it's not,
it's kind of, it's not impacting me, it's not the priority.
My diagnosis are bipolar 1, which has full mania,
the whole ff-th-th- full, I've had the full mood spectrum
mania, hypomania, moderate depression, severe depression
and mixed when you have a mixture
Plus PTSD, shutdown presentation mainly avoidance shutdown,
off on tangents that's your bipolar for you.
My videos [slurring] is that one of the reasons I made them was
you can see it with your own freaking eyes
Despite me having therapy, despite being on meds.
Where is I going with this?
Now, guess what? I kept thinking I was autistic and I was like
shocked I had the bipolar diagnosis, I rejected it at least
three times, from different clinicians, and didn't seek these
clinicians out, they just happened to see me when I was
manic or something and suggest bipolar, and when I had that
ASD assessment, they don't just say, uh,
'let's look at ASD', if they're doing a proper thorough one, which
was six hours, rather than over several weeks to see me with
different moods, rather than one of these quick jobs
that a lot of people are getting these days. [thump egg dropped carpet].
She said, 'no PTSD, bipolar', yep she confirms what the
psychiatrist said in two countries bipolar 1. Formally diagnosed with
PTSD. I did suspect that I had PTSD and she said
social anxiety disorder explains the childhood stuff like not
speaking and or the PTSD it's a combination. They other
psychologist 20 years experience and trauma agrees with her.
Selected transcript - Video Part 2
one of the reasons I got a lot of abuse because
I.. I don't agree that's self-diagnosis is valid
I don't know if I said that right, one
I don't see self-diagnosis as valid
I think one can self-suspect. I think that's okay
I suspected I had PTSD. I didn't ask for a diagnosis for it,
I was given it.
I suspected I had,
They don't call it oh Asperger's anymore
they they've made it Autism Spectrum Disorder.
I suspected that. Um.
Sometimes I'm right, sometimes I'm wrong.
The clinician needs to confirm it.
There's nothing wrong with saying you suspect something and
feeling like you identify with others, you know if it helps you.
This one [painting], um, is, oh what have I called it I've forgotten what I
call my paintings. Flying. 'Learning to Fly,' that's what
of course, so flying was a very big theme of mine,
to do with learning to manage the highs, and manage
to the crashes, without being so devastating,
self-diagnosis - video part 2
Xanthe finds creative expression including writing and painting to be therapeutic and helps her to manage her diagnoses of bipolar disorder and post-traumatic stress disorder (PTSD).