EUPD and Autistic women

Good God!  They cannot legally just refuse point blank to show you your notes.  You have a right under GDPR.

There are only two legal reasons to hold any back. 1) Because it is other people's information (fair enough) 2) they think it would cause you serious harm.

If they are using the serious harm criteria a) they MUST release to you everything except the bit that they think will do the serious harm b) there is paperwork they must fill out to justify why they think the bits they have withheld will do you serious harm

"Serious harm" sets the legal bar very high.  They must actively think you would immediately run off and commit suicide or else run off to stab someone else.  They cannot use this criteria as lazy paternalism or else to cover their own mistakes.  They cannot withhold them just because you might find them insulting or that you might find them upsetting, or even very upsetting. they must be able qualify what the "harm" they think it will do is.

I would write to their information governance to ask for the release.  They must then comply.  Ask for an assurance that no record was withheld under the serious harm criteria.  If you don't ask they may just not tell you that they have.  Having asked they can't really lie and say they haven't if they have.  If they have withheld some - challenge.  

I did get most of mine.  They tell me one note was held back under that criteria.  I do not believe that they are holding it back because they believe that it can cause "serious harm", because they must know by now that other than being medical/body phobic I am in no way mentally ill.  I believe there is something else in there they do not want me to see for some other reason.  When I challenged information governance referred it to complaints.  If they do not accept the challenge and give it to me, I will go to the information commissioner and may have to shell out YET AGAIN for someone to assess me and prove that there is no serious harm that any note can do because I am not unstable.  But I am determined to get it.  They are my notes and I want everything!

At the end of the day, when I was identified as autistic, however bad MH had been, I was forgiving of the fact that they just did not understand what they were looking at and had not had the training to recognise or communicate with autistic people.  I would have been happy with an: 'I'm sorry we didn't understand, we'll get it right in future should you need us' at any point'. 

However, only a matter of a couple of months later it slipped out in a GP's letter that this EUPD diagnosis existed and my GP still believed it, because they had said so.  Moreover, I was never told it was on file.  Now I am not so forgiving!!!  Now the very worst of MH actions made total sense, they had not just misunderstood, they had actively been trying to treat a condition I did not have and then blaming me when that didn't work.  Meanwhile telling my GP something which would actually made it harder for me to have my problems in their surgery or a hospital taken seriously.  Mind Blowing! 

Moreover it still wasn't obvious to either GP or MH that they could have mistaken autism for EUPD and weren't in the slightest bit interested in re-examining the situation, no matter the continued danger to me.  Even more mind blowing!

It is the hurried 5 minute diagnosis and the fact that it was hidden from me that prompted me to request the notes and make the complaint about that doctor.  I want to know they've got no more secrets or serious errors back there which could damage me another day.

The mental health services need full training in autism as currently it's non existent, and that's not good enough, it causes so much more stress for people with autism. I'm campaigning to try and get more support and understanding for autism and mental health support more autism friendly.

I'm sorry you were left traumatised. Understandable, of course. They can be so damaging when they're giving you the wrong help and diagnosing you with everything under the sun! Did they show you your notes? Or were you able to find them yourself? I asked about my notes last time I was in the hospital and the doctor point blank refused, saying it wasn't in my best interest to show me.

Mental health services just listening would be a good start, I think. Listening leads to understanding, if done properly.

X

I've heard of other schizophrenia misdiagnoses too.  One autism informed GP told me that was the label they slapped on everyone, before they started slapping the EUPD inappropriately on autistic people.

It's just as dangerous.  Not much is going to improve, I think, until mental health services get some thorough training in autism and learn properly when conditions co-occur and when one is mistaken for the other and start listening to patients when they say their diagnosis doesn't feel like it fits.  

I think, this is the thing that has really left me traumatised by them.  I can see from my notes now that they did not understand and jumped to a lot of conclusions from the get go and having made their minds up how I must feel, would never listen when I was telling them I didn't and some other experience was the problem.  Our relationship went down hill from there.  Mental health seem to be manufacturing their so-called challenging patients out of people who just need them to listen to what the problem actually is to start with.

I was diagnosed mentally before the autism was thought of by my doctor. I wish they had gone down the autism route beforehand as now I've got schizophrenia stuck to my name and they won't remove the diagnosis.

I find they label with what they think suits. Initially when they said I might be autistic, one doctor said "no it's highly unlikely because she can go out and talk to me". But it was all masking on my part. They had no idea how much effort and energy it took.

Mental health support makes me worse in my opinion, as does the medication because of side effects. I wish they would leave me be and let me figure things out on my own - it would be a lot less pressure.

I hope you're doing OK. We are here for you, if you need us.

:-)  Not running off anywhere, I'll dipping in and out

Dawn said:

I've been away from the forum for a bit writing a book precisely on this topic.

I wondered a bit where you were. Glad you're OK.

Unknown said:

All women should be screened for autism before being given a diagnosis of EUPD.

Bravo!  Yes, yes, yes!

Hi NessNoss,  I've been away from the forum for a bit writing a book precisely on this topic.

Yes, long story but my sensory difficulties have resulted in life long medical phobias and when they extracted my teeth went into what I now know was an horrendous meltdown/shut down cycle.  A guy who I saw for five minutes diagnosed an EUPD without any of the proper protocols, or indeed any conversation about my mental health with me. They never told me that diagnosis existed, but did tell my GP further damaging my relationships with them. I found out about it two years later by accident. (There is now a complaint with the ombudsman about that).

Needless to say the "care" from mental health thereafter was very damaging to me indeed because they were trying to treat a condition I did not have and completely failing to listen to what I can now see were my descriptions of a very autistic experience.  I've seen most of my notes now, and I can now read that they thought that my honest accounts of my experience in medical contexts were delusional.  

They completely missed the autism.

In a way thank God for the fact that my fear of medication meant that I refused all prescriptions.  I can clearly see now that had I gone along with the usual medications for EUPD, I could have ended up in an even worse state than I was in.

There are now some studies out there showing that in women the most common prior diagnosis to be removed after identification as autistic is EUPD.  There is a whole other debate on whether many women who are in fact suffering PTSD or complex PTSD are likewise misdiagnosed.  I have to say that having erroneously been the receiving end of treatment for EUPD, I have nothing but compassion for anyone who genuinely does feel this diagnosis fits.  Mental Health are not sympathetic.  Many women though have been far too rapidly and carelessly misdiagnosed and the consequence to them is sever. 

Having discovered the truth that they are in fact autistic, sadly, the MH services are very loathed to re-evaluate their previous stance and EUPD and autism are not exclusionary and, quite frankly, I think they fear that they will open themselves up to complaints and legal challenges.

I have spent £3K on an autism assessment (having worked out what the problem was for myself), several thousand on autism informed counselling in part to undo some of the damage done by MH and hundreds more having to subject myself to interrogation for EUPD by a private psychiatrist with a background in both autism and EUPD, properly able to distinguish between the two, in order to be able to challenge mental health, for my own safety in future.  As soon as they saw I had had extensive assessment by properly qualified people proving I do not have an EUPD, they back down pretty damn quick and corrected the record.  They weren't going to before they saw that.  I am really concerned for other women in the same boat who may not have the resources I do to draw on.

As for what has changed; well I now understand that none of my problems are to do with my ID and what I needed was never psychological support at all, but rather sensory integration work and some specialist nursing when in hospital.  Sad thing is that only seems to be available if you also have intellectual disability.  It is to be hoped that I am never involved with MH ever again, but there is no way no how that I trust them.

In answer to your question, yes it's common place and it's dangerous.  I would say to anyone that if you feel you have EUPD, then fine, perhaps you will get the right support from MH and I pray you do.  If you are also autistic though, they do need to make sure this is autism informed or you might not be able to benefit.  If you feel EUPD does not fit you, you MUST challenge that and make it plain to them it is not because you don't like the stigma (although it's appalling that EUPD is so stigmatised), but because it is damaging to treat anyone for any sort of condition which they do not have.

Bless you, I hope you get onto a shared hymn sheet with them where you are all happy you are looking at the right conditions and can start to move forward.

I was diagnosed with BPD before autism. It led to years of mistreatment by medical professionals.

challenge this awful, unfair and inaccurate diagnosis.

JuniperFromGallifrey said:

This might mean I would miss a bus or I needed to adjust when I started to get ready for a thing.

When in a situation like that I reason it to myself this way:

If I do that (get on the bus) I get stressed because I would surely forget something and find out about it later, and I would have to run to make it, and If I don't than I only get stressed because I missed the bus, and that stress will be gone when I get on next bus.

If you do it and it's bad, and when you don't it's bad too, than what's the point to waste energy?

when you at that point again, it means you forgot to adjust timing when to start getting ready to go.

JuniperFromGallifrey said:

Learning to not allow others to force me to hurry

that was lifechanger for me as well

Perhaps have a look at this woman, she helps articulate most things Autistics suffer through in everyday life: https://www.instagram.com/thearticulateautistic/

From what I've discovered after really researching Autistic "Neural-Wiring" in the last three years, on top of an extraordinary amount of philosophy and psychoanalytical thought which I'd been studying for almost 7, is that we have a different way of perceiving, understanding, evaluating and communicating. Let's say there's no added disabilities: Things impact us far more intensely due to our Salience Network sense perceiving things a little 'too real', we just don't dull our senses to some degree. We have this Monotropic brain which can hyper-focus when helped to its potential, and can make all kinds of seemingly invisible connexions, but it can accelerate into anxiety, beyond our control due to a potential GABA deficiency (which might have been useful in an anthropological setting to stay alert or recognise danger and not 'filter it out'). And then the Language difference, it seems Autistic thinking will focus on Function instead of Meaning or Semiotics. And out of this a wealth of differences will follow. We are somewhat beings out of time and a mismatch for Modern Society like our closely Nueral-related ADHD friends.

Sense-perceiving environmental elements as too real can also feel like an overwhelming sense of everything-all-at-once, if not in a safe environment. But the environments we find ourselves in are often filled with non-human friendly elements, assaulting our senses. We may need yoga or martial arts or some kind of physiological movement discipline which can help us begin to learn a sort of internal communication and balance.

Humans have about 40 some sense-preceptors we've identified. I discovered when engaging with uninterrupted time, it helped give me room to learn to connect more with them. Learning to not allow others to force me to hurry or do more than one thing at a time to completion was also life changing (you cannot force a process or cut it short). This might mean I would miss a bus or I needed to adjust when I started to get ready for a thing. It also meant leaving unhealthy relationships. There's a lot here already, but hopefully you can learn more in this forum! x

JuniperFromGallifrey said:

I used to just break down in tears all the time for lack of internal access to vocabulary and lack of an ability to call out or express what I could see. The frustration was one thing. But real hard social blocks, real rejection, real poverty issues, real stuff without access to a diagnostic and continually feeling misheard, misunderstood... it creates a REAL emotional response and an appropriate one, but also very emotional. The confusion of the world around me, plus my inability to articulate was so impactful I appeared completely unstable.

JuniperFromGallifrey What you said really resonates with me, I couldn’t explain how I felt and often feel frustrated that people don’t understand me which then resulted in ‘meltdowns’ in my case verbal outbursts but th was seen as I was mentally unstable and uncooperative

I've heard on repeat occasion it's common for Females to be misdiagnosed with personality or emotional "disorders" when they're actually Autistic, ADHD or a combination of sort.

I used to just break down in tears all the time for lack of internal access to vocabulary and lack of an ability to call out or express what I could see. The frustration was one thing. But real hard social blocks, real rejection, real poverty issues, real stuff without access to a diagnostic and continually feeling misheard, misunderstood... it creates a REAL emotional response and an appropriate one, but also very emotional. The confusion of the world around me, plus my inability to articulate was so impactful I appeared completely unstable. Putting a bit of biological health in order was a first step. Then learning tools to begin to remove myself from toxic situations, create boundaries, a next. The Artists Way helped me learn to listen to myself a bit more. Small accessible disciplines: writing, running, things which didn't cost anything. I found a church group for a bit interested in well-being. And slowly I began to just go to the library and read. What I had known about Autism was so little it sounded the same as Downs. 

The difference with how Autistics use language, that we're potentially using a wider nuero- 'circuitry', if not just a different part of our brain, and our neural wirings aren't hyper-connected like our Neurotypical peers has an impact in Modern Society in a way it really hasn't had prior to around 1970-80. Socio-economic impact from the shifts in Western society change values, beliefs and language. if I use language as a utility function, rather than with all the added symbols and nuances, there is a problem in communicating and receiving because matters will be lost in translation. This can impact internal dialogue (which I don't have, just images and music), I have difficulty expressing my needs and understanding social rules (which I won't have received to some degree). This impacts ability to learn, education, get a job, and such. Humans aren't a good fit for continual rejection or isolation, so someone in this situation will have little to no grounding, be completely unstable, and emotions are a 'felt' response or 'expression' of core understanding + real or perceived impact. I say perceived because how many times have I been misinterpreted and the others emotional response was offence? 

To top all this off, I didn't realise I couldn't identify my emotions properly until I landed in a therapists office around 30 for a few sessions. But it would take another 10 years to learn how that impacted and affected me. 

I can honestly say now nearly 50, the more I've learned about how society operates, or certain unspoken expectations, how to be in and invest in a friendship, how to have something to give or express my genuine feelings for others, the less rejection I've experienced. And that means a little less unknown frustration, a little more ability to navigate, make informed choices, how to learn and grow, which helps with personal integration of the self. I don't cry that much any more! I can't believe how much of it was wrapped up in frustration... 

Your journey will be different. Maybe something here resonates, but thought it could be worth sharing.