Mis diagnosed with bipolar affective disorder

Thanks so very much for this. I’ve requested my records but as yet haven’t received any useful replies from them. Your comment about them not withholding parts on the grounds of serious harm is really useful and timely as I’ve been drafting my next email to them so will include this. Thanks. Emma

You are so not alone. Misdiagnosis prior to identification of autism is common place. It used to be schizophrenia. Now most often bipolar in blokes and EUPD in women. Trouble is an autism diagnosis may or may not genuinely superceed another co-occuring condition. Where it does superceeded it, I think the patient knows best as to what truely does or does not fit them. I am a big believer that no one gets better if they have either a missed diagnosis or a misdiagnosis. They need to get it right before anyone moves forward.

If you feel autism alone explains everything. Then it does. I believe you absolutely. Getting them to accept that is another matter and yes they do fear litigation.

Innocent mistakes due to their lack of training, I can forgive. Willful not listening to and then damaging patient by treating conditions that are not there, I cannot.

What I would say, before you go any further is this: submit a formal request through their information governance under GDPR for your records. Put a line in there that you want nothing withheld on the grounds of "serious harm" ideally and if it is you want to know that something has been witheld and you want to know why. They are required to document any decision to withhold.

Going through this now myself. By consistently challenging I have now got an agreement to release everything.

As for what I have so far, I can now see what was in their heads all along and am better equipped to make them get their house in order for my protection and by God I am going to push this to make them learn from it.

I won't bore you with the whole saga, but I defo have a case to litigate and they know it. As it happens, and they should be grateful that all I am really interested in is that they get it right for my autistic brothers and sisters going forward and they ain't gonna get there until they start being honest with me now. 

No, I won't litigate, if they will learn. But I sure as Hell will never personally engage with them again.

I started to find my answers and get better when they stopped being involved with my "care".

Good luck to you, hun x

Total respect for being immune to the pressure to conform, with the box you were placed in and finding your own path.

Thanks for your openness, we have been abused by the psychiatric system and the damage we have experienced is huge. I was on anti psychotics and anti depressants for over twenty years. The two worst consequences were weight gain (25jg) and cognitive impairment. I’ve got 22kg of the weight off now since unilaterally weaning myself off olanzapine and the benefits are huge: I’ve reversed pre diabetes, reversed moderate sleep apnea, my blood pressure is down from typically 160/90 to 135/80, and I’m certain my life expectancy has improved. Bad as the physical stuff was the cognitive was worse, my spatial awareness was damaged resulting in numerous minor bumps and scpaes when driving, my logic and sequencing were destroyed and my creativity impaired to such an extent that I was unable to write (writing has been a core skill in both employment and hobbies). 

However I want everyone to know that getting off all psychotropic meds has reversed all the negatives. It’s taken three years to get off them all and for my mind and body to return to good health, but do know that the damage isn’t irreplaceable. 

Thanks so much for your support here too. I agree completely with what you say, DSM5 is fundamentally flawed and perpetuates prejudice against the ND community. Regards the borderline, a psychiatrist ran a fairly brief test on me and identified eight of the nine traits, but I now understand that all of these are a consequence of my ASC. Fortunately it needed confirmation by a psychologist and due to their administrative ineptitude this hadn’t happened by the time of the ASC diagnosis. I have made it absolutely clear to them that they will not be pursuing this further. 

I owe a huge debt of thanks to my autism assessor in Merseycare, she was unbelievably thorough and kind and validating, the result of course positively and she remains available to support me. I can’t name her here but her input has been life changing. Thank you, you know who you are … “and she collects bricks!”  

It was a perfectly understandable reaction you had and nothing you should feel responsible for. After all they were supposed to be the experts diagnosing and treating you.

Sounds like you had a lucky escape more recently. Imagine trying to have two wrongful diagnoses retracted. Having that happen within the past couple of years makes it even more apparent how little understanding there is of autism within mental health services.

Sometimes I think it would be better if they were to rip up the DSM5 and start again. Starting again on the basis that neurodiversity exists and there is no 'normal' to deviate from.

This happened to me too. I feel robbed of years of emotions as the antipsychotic medication removed any feeling from my head. I have been off all medication for 9 years now and have since had children (one of which is also autistic). Only after extensive counselling have I been able to establish and accept who I am as a person. I feel your pain and frustrations.

I am female btw, plus in 2021/22 they were also trying to pin EUPD(BPD) on me ! They didn’t complete that process thankfully 

Thanks so much for your helpful and supportive post, I really do appreciate it. It’s been hugely illuminating learning and understanding how my autism has impacted my life to date, I do appreciate that at the time I was diagnosed with bipolar understanding about autism was less than it is now but seriously, just reading DSM5 shows that they made a serious mistake even without the knowledge that I was autistic. I feel partially responsible, though do get that I shouldn’t, in that I so desperately wanted help with the pain and chaos in my mind that I enthusiastically went along with their diagnosis and embraced, at least initially, the medication treatment, but they as professionals should have understood that and been more rigorous rather than just the very quick assessment followed by twenty years of heavy duty psych meds (anti psychotics, anti depressants and sometimes mood stabilisers). The contrast between the 40 minute diagnostic assessment for bipolar and the 8 hour assessment for ASC is deplorable. 

It is a huge and growing problem and I'm sorry to hear how badly you have been impacted.

Far too often people share stories on here and elsewhere of their previous misdiagnoses. How many more have been affected. Many will feel unable to speak out. Many more could still be unaware. How many will have taken their own lives needlessly, while never learning the truth about who they are.

Autistic females are often misdiagnosed with personality disorders. My mum was before I was born, yet medics never told her. She found out years later, after requesting her medical records for something else. By then they could not even tell her what type of personality disorder she supposedly has, only that it can never be removed from her medical records. It would certainly explain a lot about how she has been treated over the years and constantly disbelieved.

Then there has been the unquantified negative impact on me, from the meds she was on all the way through her pregnancy and most of my childhood. Those meds, as in your case, having massive negative implications for her physical health too. As a result I've been very wary about taking meds for my anxiety. On the occasions I was bullied by my GP into taking antidepressants the results were almost catastrophically negative and traumatic.

It is interesting that they fear being sued for medical negligence. It is certainly my experience that services are more interested in closing ranks and covering their own backs than helping someone in distress. I wonder if this kind of issue will be the next thing to come to the attention of the ambulance chasing lawyers.

Please do let us know how you get on. If you do not already have an advocate, who can support you in the process, that is worth looking into.