Published on 12, July, 2020
I had a call from my cpn today after having an assessment with a psychiatrist last year who highlighted she wanted further evaluation of ASD ADHD & BPD.
I had an adhd assessment this year which came back as No Adhd.
I asked what the waiting list was for my referral to the adult autism team now and the Cpn said no you won’t be referred. During your adhd assessment the information gathered has been discussed at a multidisciplinary team and all involved agreed of a diagnosis of Mild EUPD specifically Emotional dysregulation.
I challenged her and said I was told last year ADHD assessment 1st then ASD assessment and she said I do not meet the threshold to be referred to Adult autism team. I’m so angry and upset.
I felt during the assessment I was highly masking due to it being a male assessor and she said I’m sorry but this may not be the diagnosis you feel is right but we have made a decision and have known you for 5 years and have lots of evidence and everything points to mild EUPD specifically Emotional dysregulation.r
Hi Lau, did you go totally NHS, NHS right to choose (free private), or paid private? Just asking so I can figure out what might be a good next step for you.
Hello, I’m not sure why I’ve not had an alert in my emails when you responded last month. I may have missed it but I’m not 100% sure. I Apologise for the late reply to you.
I am in Scotland we don’t have right to choose here. All the process was completely through NHS.
Ive since spoke with the CMHT around what parts of the assessment for adhd that I failed to meet the diagnostic criteria. I was told no adhd diagnosis was given as I do not have a parent or adult who knew me prior to the age of 12 to support the under 12 part of the assessment. I said if I had a person who confirmed what I said would I have received a diagnosis then and I was told yes.
This was really difficult for me to hear as I was brought up in and out of care from the age of 6-16 and I no longer have contact with my mother and my father is dead. This makes it impossible to have anyone to support that stage of my life. I was either in respite care, childrens homes or residential care. I’ve had so many different social workers I’ve lost count. How do you find these people who knew you back then. It’s impossible route to go down.
The CPN said if I had an ASD assessment it would be the same result as ADHD assessment as I don’t have anyone to confirm prior to age 12. She said she won’t start the ASD process anyway as she feels it’s Mild EUPD with emotional dysregulation.
This is utter garbage and I am so sorry that you are going through this.
Whilst it is helpful for obvious reasons to have a person available to describe you as a child, it is not a necessary requirement to make a diagnosis of autism. Many of us here are older adults. Not all had a relative or carer still living. They can diagnose based on your presentation now and on your recollection of what you experienced as a child. For the same reason, they shouldn't yet be dismissing the ADHD.
As for the EUPD.... blimey, where to start???
I take it you know that this is the most common misdiagnosis for unidentified autistic adults and especially women. I was misdiagnosed with it and I've been through the trauma of both being treated for a condition I never had, whilst my autism was missed and then having to spend a fortune on properly qualified experts to disprove it.
I have to say, that having been through that journey and experienced the rough end of the less than compassionate "care" EUPD patients are sometimes treated with, I have emerged with A LOT of sympathy for those who do accurately have that diagnosis and I think those who do feel that the EUPD diagnosis fits and wish to own that and combat it are very brave people indeed.
That said, there are people who are both autistic and have an EUPD. They aren't going to get far with the therapies for EUPD though unless their autism is also accounted for, and proper reasonable adjustments made in the approach of services.
Big fat question for you is, bless you, is which of these diagnoses is or are correct? Nobody gets better from anything unless they are being treated for the conditions they DO actually have rather than ones they don't. Getting to the accurate position is paramount.
To begin to 'self-diagnose' and if necessary challenge this, I would look up the diagnostic criteria for all three and see how many of each box you tick. Look at what you feel the underlying cause of each is. EUPD is often confused with ASC because some of the surface features can be similar, but when looked at deeper, have a very different cause. Having made some notes, I'd then put all that in writing to your team and have a chat to your GP. You may in the end feel you belong to all three categories or maybe only one.
Moreover, I note with this that it seems to be your CPN calling the shots here on whether or not you get an assessment - NOT good enough. A CPN is not either a clinical psychologist or a psychiatrist with any qualification to diagnose anything. Her "feeling" that you have an EUPD rather than ASC is in the end meaningless.
I hate to say it, but for many it has come down to a private assessment, which is neither fair, equitable nor morally right. But it does. MH missed my autism altogether even though in hind sight it should have been smacking them metaphorically in the face. Being treated (without my knowledge) for an EUPD just proved confusing and traumatising. I worked out for myself that I am autistic and self-referred to the World's best (NAS own Lorna Wing Centre) privately. I then discovered the EUPD diagnosis was on file and had quite a tortuous journey to get MH services to admit that they were wrong and remove it. (They hadn't even adhered to proper protocol and the shrink who made it had not even discussed my MH with me).
Good luck with it and I hope you get to your truth so that you can get to the right therapy for you.