Published on 12, July, 2020
Hi!
So I’m a 34year old women who was first diagnosed with borderline personality disorder which now is generally called emotionally unstable personality disorder at 18 yrs old but I never felt I ‘fitted’ into that box so to speak but I did have some traits. I always felt it was my social communication that I struggled with, so I was referred to a speak therapist and then an autism referral and last week was diagnosed as having autism.
To cut a long story short, i wanted to see if anyone else was diagnosed with EUPD before getting an autism diagnosis? And if much has changed with regards to your mental health support or medication?
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.
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.