Could EUPD come under the neuro diverse umbrella?

[UndertheCedartree]

I have been to a neuro diversity conference today. One thing that came up was that Emotionally Unstable Personality Disorder (BPD) should be categorised as a neuro developmental disorder like Autism. I found this so interesting as I've often thought the same. There is so much cross over between EUPD and other disorders like ASD and ADHD, for example many of the differences in the brain are the same, impulsiveness and black and white thinking can happen in EUPD and ADHD/Autism.

I would love to hear from anyone who has experience of these disorders what you think?

@Mickarooni

Genuine question, are people with an ASC offered DBT without a dual diagnosis? I’ve never come across this but I wouldn’t know if it’s happened or not. I do know, like most therapies, there are inexcusably long waiting lists for DBT for those with a diagnosis of EUPD.

For comorbities. Not for autism.

I am not a support worker so again another attempt to dismiss my experience. i do work closely with specialists so please do stop trying to dismiss my experience and knowledge . I work closely with those you think are beyond my expertise. Funnily enoughI am currently supporting my consultant psychiatrist colleagues in there development plans for autistic people who may end up in hospital and ensuring the mental health teams who are not experts have the necessary in reach support and also the person is supported. Consultants are not gods and not untouchable and can be challenged. You may wish to take a look on the NHSe website

The OP has stated multiple times that she has ASD. You should probably cut her some slack when it comes to her style of communication.

I would expect bluntness from the OP, not sneering and jeering.

In her OP:

I would love to hear from anyone who has experience of these disorders what you think?

Clearly not. Or only posters who agree with her hypothesis.

@rogueone

I am not a support worker so again another attempt to dismiss my experience. i do work closely with specialists so please do stop trying to dismiss my experience and knowledge . I work closely with those you think are beyond my expertise. Funnily enoughI am currently supporting my consultant psychiatrist colleagues in there development plans for autistic people who may end up in hospital and ensuring the mental health teams who are not experts have the necessary in reach support and also the person is supported. Consultants are not gods and not untouchable and can be challenged. You may wish to take a look on the NHSe website

@rogueone - stop picking on me because I'm autistic. If you continue I'll report you. You may think you can walk all over us like you do at work but I won't. You called me and others liars. Have you read the journal I linked proving you are the liar?

@milkyaqua

The OP has stated multiple times that she has ASD. You should probably cut her some slack when it comes to her style of communication.

I would expect bluntness from the OP, not sneering and jeering.

In her OP:

I would love to hear from anyone who has experience of these disorders what you think?

Clearly not. Or only posters who agree with her hypothesis.

@rogueone called me a liar. I proved I was not and she still hasn't apologised. She decided to sneer at autistic people so I mirrored and sneered back.

@milkyaqua - just copying EUPD is cPTSD from another poster and something that was said 8 pages ago hardly creates a very interesting discussion. What evidence do you have? What experience do you have? Why do you think that? Do you have examples?

just copying EUPD is cPTSD

I didn't. It isn't.

@milkyaqua

just copying EUPD is cPTSD

I didn't. It isn't.

Ok, you said EUPD is the result of trauma. Which has already been said 10s of times. I am really interested in what you think this? What is your experience of the condition? Why you think that etc

Sorry I meant why not what! And I've repeated myself! I just mean I'd love to know what lead you think that as I'm not sure many people have really said. Just asserted that is the truth. When actually, it's highly debatable!

@Mickarooni

The CAMHS clinical psychologist often use DBT techniques to work with young people with autism

This is what the other poster said. Didn't get to hear about comorbidities as @rogueone called us liars. I suppose he felt a bit silly after asserting that DBT would have zero effect on someone with autism

@milkyaqua - it wasn't my hypothesis it was that of the speaker at the conference I went to.

I was diagnosed with BPD several years ago except I was never really told formally It was mentioned to me in passing. A psychiatrist mentioned it and when I said I don't have BPD (cause no one had told me) he said well it's written down here. When I tried to question it he changed the subject and wouldn't listen to anything I tried to say. No one sat down with me and told me why I had this diagnosis and what symptoms I was showing. I admit I knew nothing about this disorder so did some research by looking at the symptoms. I couldn't relate to any of them. I don't have black and white thinking, I don't have a fear of abandonment, I don't split, I don't have issues with interpersonal relationships and I don't have a background of trauma and there were many more criteria that just didn't fit with me. I also asked people who have known me for a long time what they thought. They too thought it was ridiculous and didn't describe me at all. When I tried to speak to any psychiatrist about this when hospitalised (I'm diagnosed schizoaffective disorder) I was told I was just bored and looking for attention, or they changed the subject or pretended to not have heard me. All I wanted was for someone to sit down with me and explain how I met each criteria because I honestly couldn't see how I did. Once that had been done I would have found it easier to deal with the diagnosis as I believe the first step to recovery is acceptance but I couldn't get anyone who was willing to talk to me. I felt as though I was being treated as an inconvenience.
A few years later I was seeing a clinical psychologist about my schizoaffective disorder and one day I mentioned BPD and was told that the way I see myself and the way I see others meant it was highly unlikely I had it. This confused me so I asked if we could go through the criteria in the DSM ( which is what we use in Australia) we spoke about each criteria and what they meant and was told she would tick off each one I met. I did not meet one single criteria.
I was told misdiagnosis happens often and I understand that but I think the problem was that one psychiatrist wrote the word BPD in my file and instead of doing further investigating subsequent psychiatrists just went with it. Why? Is there a problem with questioning someone's diagnosis? Who is it helping by not doing this?
I think instead of putting BPD/EUPD under the same umbrella as autism far more scrutiny needs to be put on why so many people (especially women) are labelled with such a stigmatising disorder especially when they meet none of the criteria. I also don't meet any criteria for an autism diagnosis. I know I don't have BPD and it's not because I'm in denial. It's time people like me were listened to and not continuously fobbed off.

Well I hoped to find this discussion interesting but it’s mostly full of a few rather unpleasant posters determined to dismiss the OP out of hand and be bloody rude about it! OP I can see why you got upset at some of them reading through the thread.

Here’s a way of thinking about this kind of idea - if there are two women - one with a limb difference that she was born with no lower arm. Another lost her lower arm in an accident when she was a child. One of these women was born like this; the other became like this due to trauma; but both have very similar needs now as adults, will experience the world similarly and be treated by others similarly. Very crude and imperfect analogy here as mental health and neurodivergence are extremely complex, so please no one waste their time picking this specific example apart, but the point is, the individual diagnosis and aetiology is really an academic question, what really matters is the experience of the person and the function the person currently has, whether they need or want therapy to modify how they function, whether they need or want adjustments made to accommodate the fact they have 1 hand; and of course for society to accept that some people don’t have 2 hands and not be stigmatised for it.

I hope that made sense in context. I feel like I’m trying to express nebulous thoughts about connections, like abstract overlapping shapes and colours, into really limited inadequate words .

OP I have googled “Sarah Jane Critchley” + “EUPD” but didn’t come up with much specifically on this topic, the info online seems to be mostly about her work on advising parents and educators of SEN children. Also can’t find much information about her professional training/qualifications or reason for her being considered an expert in the first place, just that she has an MBA, self-identifies as autistic and has autistic children, worked for an autism education organisation and wrote a book. She doesn’t immediately sound to me like someone very well placed to comment on wider theories in developmental/cognitive/affective neuroscience and psychiatry etc, unfortunately. I’d be really interested to read more about her theory though and what is behind it if it is available anywhere.

Really interesting thread., shame it’s being spoilt by personal attacks. My family & I have experienced severe neglect & death at the hands of the NHS so I am naturally inclined to be extremely wary of all NHS/medical professionals, I do not fully trust, I have been misdiagnosed, treated appallingly which has caused untold damage. I try very hard to keep an open mind on things, to not be influenced by my experiences of the NHS but it is very difficult as they have catastrophically failed me & family time & time again. In my late 40s the only way I was able to get a correct diagnosis was to go private, this is costing a small fortune but I am finally getting the help I so desperately need, the NHS were just prolonging my misery.

I have CPTSD, the NHS said I had mild depression & anxiety, I was never formally diagnosed, just consistently fobbed off. The therapy I am doing requires me to be more involved with my own recovery, peoples lived experiences can’t be ignored. I have been doing a lot of thinking about me being ND, through therapy I am remembering a lot about how I was as a child, my behaviours then & now, my family behaviours, I am trying to make sense of a very confusing life. I have many traits that do seem to point to ND, my CPTSD is no doubt rooted in childhood trauma but reading this it could equally be due to the trauma of not having my needs met as a ND child. I believe my father suffered with various undiagnosed conditions, also my brother, most likely my mother, I recall having some traits that look ND, a lot of my current behaviours feel like I may not just have CPTSD. This thread has been very helpful for me, the masking & splitting was an interesting read, recognising I do these, also my husband was able to recognise these behaviours. I think we all need to listen to each other, try not to result to personal attacks, there are differences of opinion, lets hear them.. The landscape on these things is constantly changing, we need to be open to what we think we know may not necessarily be correct.

@Sagealicious

I was diagnosed with BPD several years ago except I was never really told formally It was mentioned to me in passing. A psychiatrist mentioned it and when I said I don't have BPD (cause no one had told me) he said well it's written down here. When I tried to question it he changed the subject and wouldn't listen to anything I tried to say. No one sat down with me and told me why I had this diagnosis and what symptoms I was showing. I admit I knew nothing about this disorder so did some research by looking at the symptoms. I couldn't relate to any of them. I don't have black and white thinking, I don't have a fear of abandonment, I don't split, I don't have issues with interpersonal relationships and I don't have a background of trauma and there were many more criteria that just didn't fit with me. I also asked people who have known me for a long time what they thought. They too thought it was ridiculous and didn't describe me at all. When I tried to speak to any psychiatrist about this when hospitalised (I'm diagnosed schizoaffective disorder) I was told I was just bored and looking for attention, or they changed the subject or pretended to not have heard me. All I wanted was for someone to sit down with me and explain how I met each criteria because I honestly couldn't see how I did. Once that had been done I would have found it easier to deal with the diagnosis as I believe the first step to recovery is acceptance but I couldn't get anyone who was willing to talk to me. I felt as though I was being treated as an inconvenience. A few years later I was seeing a clinical psychologist about my schizoaffective disorder and one day I mentioned BPD and was told that the way I see myself and the way I see others meant it was highly unlikely I had it. This confused me so I asked if we could go through the criteria in the DSM ( which is what we use in Australia) we spoke about each criteria and what they meant and was told she would tick off each one I met. I did not meet one single criteria. I was told misdiagnosis happens often and I understand that but I think the problem was that one psychiatrist wrote the word BPD in my file and instead of doing further investigating subsequent psychiatrists just went with it. Why? Is there a problem with questioning someone's diagnosis? Who is it helping by not doing this? I think instead of putting BPD/EUPD under the same umbrella as autism far more scrutiny needs to be put on why so many people (especially women) are labelled with such a stigmatising disorder especially when they meet none of the criteria. I also don't meet any criteria for an autism diagnosis. I know I don't have BPD and it's not because I'm in denial. It's time people like me were listened to and not continuously fobbed off.

I'm so sorry to hear that. Some psychiatrists can be very funny if you dare question them. I came across one like that once. She suggested putting me on a medication, I asked if I could have a look at the BNF to see what it was, she was very unpleasant because I didn't just blindly follow what she said.

@WhenZoomWasJustAnIceLolly

I think DBT would help those with ASD lots

I think DBT would help anyone. It’s nothing like ABA. It’s not only used for BPD either.

Can one do DBT with a book DIY style or do you have to have a therapist?

@LemonViolet

Well I hoped to find this discussion interesting but it’s mostly full of a few rather unpleasant posters determined to dismiss the OP out of hand and be bloody rude about it! OP I can see why you got upset at some of them reading through the thread.

Here’s a way of thinking about this kind of idea - if there are two women - one with a limb difference that she was born with no lower arm. Another lost her lower arm in an accident when she was a child. One of these women was born like this; the other became like this due to trauma; but both have very similar needs now as adults, will experience the world similarly and be treated by others similarly. Very crude and imperfect analogy here as mental health and neurodivergence are extremely complex, so please no one waste their time picking this specific example apart, but the point is, the individual diagnosis and aetiology is really an academic question, what really matters is the experience of the person and the function the person currently has, whether they need or want therapy to modify how they function, whether they need or want adjustments made to accommodate the fact they have 1 hand; and of course for society to accept that some people don’t have 2 hands and not be stigmatised for it.

I hope that made sense in context. I feel like I’m trying to express nebulous thoughts about connections, like abstract overlapping shapes and colours, into really limited inadequate words .

OP I have googled “Sarah Jane Critchley” + “EUPD” but didn’t come up with much specifically on this topic, the info online seems to be mostly about her work on advising parents and educators of SEN children. Also can’t find much information about her professional training/qualifications or reason for her being considered an expert in the first place, just that she has an MBA, self-identifies as autistic and has autistic children, worked for an autism education organisation and wrote a book. She doesn’t immediately sound to me like someone very well placed to comment on wider theories in developmental/cognitive/affective neuroscience and psychiatry etc, unfortunately. I’d be really interested to read more about her theory though and what is behind it if it is available anywhere.

@LemonViolet - thank you. And yes, that is a very good point that someone can have the same needs from different causes. And yes, I understand that words don't always seem adequate! It is quite common for that to be the case and for programmes originally designed for one group to go on to be used by another.

Re:the speaker - I don't think I was clear it wasn't the main point of her talk. I don't think she is an expert in this area. It was just an idea she brought up that resonated with me so I was interested in exploring the idea. I did get her book, though so I'll update if she talks about the idea in that.

@crispsarny

Really interesting thread., shame it’s being spoilt by personal attacks. My family & I have experienced severe neglect & death at the hands of the NHS so I am naturally inclined to be extremely wary of all NHS/medical professionals, I do not fully trust, I have been misdiagnosed, treated appallingly which has caused untold damage. I try very hard to keep an open mind on things, to not be influenced by my experiences of the NHS but it is very difficult as they have catastrophically failed me & family time & time again. In my late 40s the only way I was able to get a correct diagnosis was to go private, this is costing a small fortune but I am finally getting the help I so desperately need, the NHS were just prolonging my misery.

I have CPTSD, the NHS said I had mild depression & anxiety, I was never formally diagnosed, just consistently fobbed off. The therapy I am doing requires me to be more involved with my own recovery, peoples lived experiences can’t be ignored. I have been doing a lot of thinking about me being ND, through therapy I am remembering a lot about how I was as a child, my behaviours then & now, my family behaviours, I am trying to make sense of a very confusing life. I have many traits that do seem to point to ND, my CPTSD is no doubt rooted in childhood trauma but reading this it could equally be due to the trauma of not having my needs met as a ND child. I believe my father suffered with various undiagnosed conditions, also my brother, most likely my mother, I recall having some traits that look ND, a lot of my current behaviours feel like I may not just have CPTSD. This thread has been very helpful for me, the masking & splitting was an interesting read, recognising I do these, also my husband was able to recognise these behaviours. I think we all need to listen to each other, try not to result to personal attacks, there are differences of opinion, lets hear them.. The landscape on these things is constantly changing, we need to be open to what we think we know may not necessarily be correct.

I'm so sorry you have been let down. But it is great to hear you are getting back on track. Yes, it is a very interesting topic and the theories are constantly shifting so as you say we do need to be open to new ideas. Good point.

I think what you have articulated is how I feel about EUPD. I don't think it can be explained as 'just' cPTSD or trauma based. It will be interesting to see how the ideas develop in the next few years.

@SaladWabbit - you can learn the skills at home, although some might be a bit hard to understand without someone to explain. The skills are like a toolbox so different ones will resonate with different people but yes, I think they can be useful for anyone.

The full on therapy needs a therapist as you have 1:1 sessions alongside learning the skills in a group. You also have 'coaches' to help in between sessions.

@Thoosa

Bloody hell. When will people stop trying to cure autism? It’s innate.

Was that aimed at me @Thoosa? Not sure if it was about DBT? But if so DBT for someone with Autism is about learning skills to help in life, it is not about curing.

Can anyone recommend a DBT book?

[quote UndertheCedartree]@SaladWabbit - you can learn the skills at home, although some might be a bit hard to understand without someone to explain. The skills are like a toolbox so different ones will resonate with different people but yes, I think they can be useful for anyone.

The full on therapy needs a therapist as you have 1:1 sessions alongside learning the skills in a group. You also have 'coaches' to help in between sessions.[/quote]
Thank you

Why not put everything under the neurodiverse umbrella and realise that humans are a diverse bunch.

This is what's wrong with the neurodiverse umbrella.

Honestly I wish we would get rid of it.

Can you imagine any other disability, lets say a veteran who's lost his/ her legs, where it's lumped in with everything from a stubbed toe to a verruca and put under the banner of "leg diversity".

Celebrate leg diversity! You're not disabled, you're diverse!

Fuck off.

@SaladWabbit

Can anyone recommend a DBT book?

I like this one - I linked the journal, there is a book too. It is specifically about EUPD, though. But it could still be useful. www.amazon.co.uk/Stronger-Than-BPD-Journal-Personality/dp/1684030617/ref=asc_df_1684030617/?hvlocphy=9045030&linkCode=df0&hvptwo&psc=1&psc=1v&hvnetw=g&hvadid=310973726618&hvpone&hvlocint&th=1&hvpos&hvdev=m&hvdvcmdl&hvqmt&tag=mumsnetforu03-21&hvtargid=pla-490948612766&hvrand=9047630721868053283

@fghjk

Why not put everything under the neurodiverse umbrella and realise that humans are a diverse bunch.

This is what's wrong with the neurodiverse umbrella.

Honestly I wish we would get rid of it.

Can you imagine any other disability, lets say a veteran who's lost his/ her legs, where it's lumped in with everything from a stubbed toe to a verruca and put under the banner of "leg diversity".

Celebrate leg diversity! You're not disabled, you're diverse!

Fuck off.

Well, being ND doesn't necessarily mean you have to/want to celebrate it. Is that the bit you don't like? Not everyone who is ND thinks they have a disability but plenty do, of course. Many illnesses effect people differently - someone may have no symptoms and someone may have severe symptoms but both the same diagnosis. I think that type of difference can't be blamed on the ND umbrella.