EUPD and Autistic women

I was diagnosed mentally before the autism was thought of by my doctor. I wish they had gone down the autism route beforehand as now I've got schizophrenia stuck to my name and they won't remove the diagnosis.

I find they label with what they think suits. Initially when they said I might be autistic, one doctor said "no it's highly unlikely because she can go out and talk to me". But it was all masking on my part. They had no idea how much effort and energy it took.

Mental health support makes me worse in my opinion, as does the medication because of side effects. I wish they would leave me be and let me figure things out on my own - it would be a lot less pressure.

I hope you're doing OK. We are here for you, if you need us.

I've heard of other schizophrenia misdiagnoses too.  One autism informed GP told me that was the label they slapped on everyone, before they started slapping the EUPD inappropriately on autistic people.

It's just as dangerous.  Not much is going to improve, I think, until mental health services get some thorough training in autism and learn properly when conditions co-occur and when one is mistaken for the other and start listening to patients when they say their diagnosis doesn't feel like it fits.  

I think, this is the thing that has really left me traumatised by them.  I can see from my notes now that they did not understand and jumped to a lot of conclusions from the get go and having made their minds up how I must feel, would never listen when I was telling them I didn't and some other experience was the problem.  Our relationship went down hill from there.  Mental health seem to be manufacturing their so-called challenging patients out of people who just need them to listen to what the problem actually is to start with.

I've heard of other schizophrenia misdiagnoses too.  One autism informed GP told me that was the label they slapped on everyone, before they started slapping the EUPD inappropriately on autistic people.

It's just as dangerous.  Not much is going to improve, I think, until mental health services get some thorough training in autism and learn properly when conditions co-occur and when one is mistaken for the other and start listening to patients when they say their diagnosis doesn't feel like it fits.  

I think, this is the thing that has really left me traumatised by them.  I can see from my notes now that they did not understand and jumped to a lot of conclusions from the get go and having made their minds up how I must feel, would never listen when I was telling them I didn't and some other experience was the problem.  Our relationship went down hill from there.  Mental health seem to be manufacturing their so-called challenging patients out of people who just need them to listen to what the problem actually is to start with.

Good God!  They cannot legally just refuse point blank to show you your notes.  You have a right under GDPR.

There are only two legal reasons to hold any back. 1) Because it is other people's information (fair enough) 2) they think it would cause you serious harm.

If they are using the serious harm criteria a) they MUST release to you everything except the bit that they think will do the serious harm b) there is paperwork they must fill out to justify why they think the bits they have withheld will do you serious harm

"Serious harm" sets the legal bar very high.  They must actively think you would immediately run off and commit suicide or else run off to stab someone else.  They cannot use this criteria as lazy paternalism or else to cover their own mistakes.  They cannot withhold them just because you might find them insulting or that you might find them upsetting, or even very upsetting. they must be able qualify what the "harm" they think it will do is.

I would write to their information governance to ask for the release.  They must then comply.  Ask for an assurance that no record was withheld under the serious harm criteria.  If you don't ask they may just not tell you that they have.  Having asked they can't really lie and say they haven't if they have.  If they have withheld some - challenge.  

I did get most of mine.  They tell me one note was held back under that criteria.  I do not believe that they are holding it back because they believe that it can cause "serious harm", because they must know by now that other than being medical/body phobic I am in no way mentally ill.  I believe there is something else in there they do not want me to see for some other reason.  When I challenged information governance referred it to complaints.  If they do not accept the challenge and give it to me, I will go to the information commissioner and may have to shell out YET AGAIN for someone to assess me and prove that there is no serious harm that any note can do because I am not unstable.  But I am determined to get it.  They are my notes and I want everything!

At the end of the day, when I was identified as autistic, however bad MH had been, I was forgiving of the fact that they just did not understand what they were looking at and had not had the training to recognise or communicate with autistic people.  I would have been happy with an: 'I'm sorry we didn't understand, we'll get it right in future should you need us' at any point'. 

However, only a matter of a couple of months later it slipped out in a GP's letter that this EUPD diagnosis existed and my GP still believed it, because they had said so.  Moreover, I was never told it was on file.  Now I am not so forgiving!!!  Now the very worst of MH actions made total sense, they had not just misunderstood, they had actively been trying to treat a condition I did not have and then blaming me when that didn't work.  Meanwhile telling my GP something which would actually made it harder for me to have my problems in their surgery or a hospital taken seriously.  Mind Blowing! 

Moreover it still wasn't obvious to either GP or MH that they could have mistaken autism for EUPD and weren't in the slightest bit interested in re-examining the situation, no matter the continued danger to me.  Even more mind blowing!

It is the hurried 5 minute diagnosis and the fact that it was hidden from me that prompted me to request the notes and make the complaint about that doctor.  I want to know they've got no more secrets or serious errors back there which could damage me another day.

The mental health services need full training in autism as currently it's non existent, and that's not good enough, it causes so much more stress for people with autism. I'm campaigning to try and get more support and understanding for autism and mental health support more autism friendly.

I'm sorry you were left traumatised. Understandable, of course. They can be so damaging when they're giving you the wrong help and diagnosing you with everything under the sun! Did they show you your notes? Or were you able to find them yourself? I asked about my notes last time I was in the hospital and the doctor point blank refused, saying it wasn't in my best interest to show me.

Mental health services just listening would be a good start, I think. Listening leads to understanding, if done properly.

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