Issues with diagnosis as an adult

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Hi,

I'm a 24yr old female with comorbid unspecified Bipolar type II, BPD (I would argue I no longer fit large chunks of the diagnostic criteria), eating disorder unspecified and anxiety. I am married and I have 2 young children. I understand the difficulties in diagnosing Aspergers in those with MH diagnoses.

In 2011 at the age of 17-18yrs I was inpatient in 3 psychiatric units over 1 admission, for suicidal intent. The first I was in was The Priory (NHS funded). While there I was told I have Aspergers Syndrome, and my entire life started to make sense. Since then, I have always noted to NHS professionals, friends and family that I am diagnosed with Aspergers, as this is what I firmly believed, and I understood my Priory stint had confirmed this absolutely. My care coordinator started looking into support for me (specifically looking to find other mums on the spectrum). It was then that she discovered very little supporting evidence of this diagnosis or any correspondence with reference to it. Thus, we decided to pursue an NHS assessment and diagnosis. We both presumed this should be relatively straight forward given my history. She has a son who has Aspergers and it took 10yrs for his diagnosis so she has good experience of the system overall.

2 weeks ago I had my first meeting with the Wiltshire Autism Diagnostic Services and was dealt a blow that without him having evidence of what I was like before 5yrs of age, I am very unlikely to obtain a diagnosis. We decided to continue anyway, as he said he can write a letter stating his beliefs without being able to formally label it.

I don't understand.

How can that be right? Some people do not get diagnosed until they are double my age, with parents dead or unable to recollect. Some people are adopted and have no contact with family or family friends.

I have a family but they will not help. My mother and I have no contact, and my father and I have a difficult relationship (he left the family home when I was 5 and I didn't regularly see him). He also doesn't 'believe' in mental health and to him I am "fine". I have an aunt on my Dad's side but I rarely see her and I have messaged to ask for her help but have received no reply.

I have a copy of my entire medical records and prior to my 5th birthday there is nil reference to difficulties. My mother slipped into depression and alcoholism and drug use periodically throughout my childhood and we had a very fragile relationship and home. This is noted when I was older and displaying many difficulties; the input from 3rd parties appear to be requested by her. On all accounts, my medical records paint me as a "happy young lady" who "has friends" and can "maintain eye contact" etc. I agree that this may have been the perception; I was an incredibly witty and academically intelligent girl, living in an awful home situation, and I know I intentionally forced myself to be another person when I was outside of the home, and I know that the girl they saw is not the girl I knew was inside. My notes do refer to me as "very worried", and "concerned about social injustice", and "feeling lonely", and "feeling she has no friends". But, for the most part they are not providing an accurate portrayal and I feel that handing these over to W.A.D.S is going to prove detrimental.

According to my medical records, I was seen by many different 3rd parties, many of which no longer exist / have been consolidated and to request every snippet of information from many services is going to cost me money that I cannot afford, and the emotional burden is immense.

I have accessed records from The Priory. However, they no longer keep official records of me, and thus they only have sparse correspondence and some emails. My mother met with my consultant at The Priory, but they have no notes from that meeting now. The notes make references to me being highly likely someone with Aspergers. There is a brief note regarding the meeting between consultant and my Mother which confirms they concluded atypical speech, play, development etc. It also mentioned I am not aware of the immense lack of social and developmental abilities I have.

I have also attempted to access my school records (they are destroyed at age 25yrs). The gentleman I spoke to was very pleasant and happy to provide them... In a few months as they're currently in an unsafe building being made safe.

I am at a complete loss. Is it seriously impossible to diagnose me without this information? Surely my current traits indicate me being on the spectrum, and the brief correspondence provided by The Priory making reference to my traits and apparent diagnosis should be enough for them to pursue with an outlook to diagnose or discount, as oppose to telling me it is likely to be a complete impossibility?

In short, I am tired of this entirely, and very worried. I have been losing sleep and energy over it.

Thanks in advance.

H
x

I feel your pain, I am in a similar situation at the moment.

First of all it is not impossible to obtain a diagnosis as an adult without information relating to your early life.
I have been speaking to a private autism diagnosis service who have confirmed that early evidence isn't necessary.
They have stated that I can bring someone with me, be it a parent, friend, sibling or partner - but again this is not required for a diagnosis.

I think NHS services vary greatly between areas in the UK, and I get the impression that a lot of areas (especially mine) would rather not diagnose autism as the services are stretched so thin they cant offer a suitable follow-up service after diagnosis.
I have been told the waiting list in my area is currently 4 years (which is why I'm looking at private diagnosis)
Personally I think I'd just be happy being diagnosed so I know I'm not completely insane, but I'd be interested to see what services might be available.

I think it's ridiculous that they have told you that when Aspie boys generally get picked up around age 11 and girls around 16. Also there is a large number of people who get diagnosed in later life because they have learned to cope in various ways.
I believe Chris Packham (Spring/Autumnwatch presenter) was diagnosed with Aspergers at around the age of 45, so people can lead fairly successful lives without being picked up on.

I hope you can get yourself a proper diagnosis if that's what you want, also remember that by law (autism act 2009) you are entitled to a diagnosis should you suspect autism yourself (regardless of GPs opinions)

The only other thing I can suggest is make plenty of notes about anything you remember that you think is relevant.
I'm currently up to about 40 A4 pages, so I'm hoping there's more than enough to bore any assessor to death

Hope this helps and good luck!