Getting Aspergers diagnosis removed from medical records?

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chriserenity@hotmail.com
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07 Sep 2016, 6:50 am

I am English and live in the UK as do my medical records. Does anyone have any experience getting the diagnosis removed? I believe I was incorrectly diagnosed in 2010 and it is a barrier to doing clinical trials, one of the main ways I earn money at the moment - its classified by the testing companies as a CNS condition and precludes me from participating in the majority of trials, sometimes all of them in the case of one organsiation.

Advice?



AspieUtah
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07 Sep 2016, 7:05 am

chriserenity@hotmail.com wrote:
I am English and live in the UK as do my medical records. Does anyone have any experience getting the diagnosis removed? I believe I was incorrectly diagnosed in 2010 and it is a barrier to doing clinical trials, one of the main ways I earn money at the moment - its classified by the testing companies as a CNS condition and precludes me from participating in the majority of trials, sometimes all of them in the case of one organsiation.

Advice?

Diagnosticians are loathe to remove diagnoses (theirs or others). But, any diagnosis may be overruled with a new, presumeably more accurate, diagnosis. For example, your Asperger Syndrome (AS) diagnosis could suddenly become anxiety and obsessive compulsions with a bit of depression. But, diagnosticians go with the most likely diagnoses. They don't offer to obfuscate.

Have you considered joining clinical trials and other research where your AS isn't a deal breaker? In some research, it might even help you to be recruited.


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Diagnosed in 2015 with ASD Level 1 by the University of Utah Health Care Autism Spectrum Disorder Clinic using the ADOS-2 Module 4 assessment instrument [11/30] -- Screened in 2014 with ASD by using the University of Cambridge Autism Research Centre AQ (Adult) [43/50]; EQ-60 for adults [11/80]; FQ [43/135]; SQ (Adult) [130/150] self-reported screening inventories -- Assessed since 1978 with an estimated IQ [≈145] by several clinicians -- Contact on WrongPlanet.net by private message (PM)


Scorpius14
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08 Sep 2016, 8:13 am

My diagnosis was done all on paper as the computers in the 90s would have been a bit expensive for keeping records as the organisation that handled my case looked as if it was poorly funded as the condition itself (Kanner syndrome) was misunderstood at the time, and it still looks to be the same today. I was told my diagnosis papers expire and get destroyed after 15 years which it has been 7 years past expiration by now.

I can't say if the rule applies for digital diagnoses, as in today's technology they would have both digital and paper documentation.

It's strange saying that my diagnosis has upgraded into a more accurate illness when nothing has changed since childhood, I still experience the world in the same way, have a different perspective, always have - always will.



Jacoby
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08 Sep 2016, 9:21 am

Did they say that it would be okay to participate in these trials if the diagnosis was 'removed'? I kind of doubt they would if they knew.

There was a time I wanted to remove my 'official' dx because I wanted to join the military but while they have waivers they would never accept me in a million years because my health history. C'est la vie, I guess it was never meant to be but I'd be lying if there wasn't some lingering bitterness.



alex
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08 Sep 2016, 9:32 am

Why are you submitting those medical records to the people doing the clinical trials? How would they know you're autistic if you just don't submit records from the doctor who diagnosed you?


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chriserenity@hotmail.com
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20 Sep 2016, 2:24 am

Thats a really good point actually. I hadn't considered doing trials that specifically want people with Aspergers. Have done a few searches and can't find any studies. Do any of you know of any places in the UK that operate clinical trials and want people on the spectrum?

Alex, yeah its part of the screening process that they see your medical records and the diagnosis is on there (I think) - I've never actually seen them now I think about it, perhaps I'll take a peek to see the official medical history of me.

Hmm, thanks for replies people. I should've come to the the smartest people in the world before really :D
Food for thought.