Confirmed Misdiagnosis of Aspergers Syndrome

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apex116
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04 Jun 2021, 2:40 pm

Dear All,

I am writing this as I would like to hear your advice on this matter where I live in the United Kingdom.

In my childhood I received a professional diagnosis of Asperger's syndrome as a young child in primary school. I strongly disagreed with this diagnosis throughout my childhood and as a young adult where this misdiagnosis caused great distress. It was clear in my mind that I was not on the autistic spectrum.

It was only until recently at the age of 26 that I undertook the ADOS autism test where it was confirmed that I displayed no symptoms of autism and my diagnosis was removed. There was no other condition identified.

This was backed up by another test in sixth form where I did not meet the criteria for autism, they decided however not to remove the diagnosis which they should have done.

I simply grew up in a school with a number of peers with challenging behaviours. Unfortunately, I don't believe the school acted honestly and just pushed for label to allow them to get the financial support for a challenging year group.

I believe that this is the case of medical negligence where I believe a competent professional should have been able to clearly see that I was not on the autistic spectrum as I had no traits. The diagnosis was just a severe case of defamation based on their incorrect observation/description which had a serious impact on myself.

The diagnosis had a serious impact on my self esteem, career and treatment from others. It also allowed the school and family to overlook any safeguarding issues during this time.

I have requested a full copy of my medical records and I don't know if this an issue that I can pursue within the NHS for medical negligence?



Joe90
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04 Jun 2021, 5:02 pm

Welcome to WP. I'm in the UK too. UK rules!! ! :cheers:

I can relate to what you're saying, although I don't know if I'm just doubtful of my diagnosis because of denial or what. How did you get officially diagnosed if you showed no symptoms? Usually people who are misdiagnosed turn out to have some other disorder like ADHD or anxiety. I know these days a kid has only got to be shy and they get diagnosed with Asperger's.

I have ADHD and anxiety disorder and sometimes I wonder if I only have those two alone and not Asperger's. But I think I'm just hanging on to the hope that I was misdiagnosed. I received the Asperger's diagnosis when I was nearly 9, and I went through the same as what you did; having a label had a severe impact on self-esteem, career and treatment from others.


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steve30
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04 Jun 2021, 6:19 pm

Welcome to the forum.

Interesting situation.

Quote:
It was only until recently at the age of 26 that I undertook the ADOS autism test where it was confirmed that I displayed no symptoms of autism and my diagnosis was removed. There was no other condition identified.


Was this test administered by a professional (e.g. psychiatrist)?

It will be difficult to say anything until you have access to your medical records. If you haven't already, make sure that you get ALL relevant medical records, including those from your GP, as well as other clinics you attended when you were young (e.g. hospital or psychiatry department).

The psychiatrist who diagnosed you should ideally have made clinical notes which should help you figure out how he made the decision. These may be handwritten though and it is possible it may be difficult to decipher them. When you were diagnosed the psychiatrist should have written a letter to confirm this and to explain the medical history and their reasoning for the diagnosis; this will probably have been sent to your GP and possibly any other professionals whom you were seeing at the time.

Hopefully this paperwork will help you establish the reasoning for the original diagnosis.

It will be difficult to say whether it was negligence or not. It could have been that your parent or school genuinely thought you had a condition, and the doctor agreed, but got it wrong. Such a thing could have been a genuine mistake, which may or may not have been negligent.

It could be that you genuinely did show some symptoms when you were little, in which case the diagnosis would have been warranted at the time, even if you disagreed with it. If you do not show symptoms any more, then it is appropriate for the diagnosis to be removed but the original diagnosis wouldn't have been negligent as you showed symptoms at the time. There was an interesting case a while back where Dr Tony Attwood (Aspergers expert) diagnosed someone as a child, but ultimately ended up "undiagnosing" him, because he showed few (if any) symptoms any more as an adult and the diagnosis was affecting his career.

I highly recommend you consult with a legal professional, especially if you want to accuse them of negligence. I wouldn't bother going down any NHS complaints procedure on your own as these things are pretty much set up for you to fail. As the situation involves various people going back quite a few years, it may be a rather difficult and long winded process.

I hope that is helpful. Please let us know how you get on, or if you need any more help.



apex116
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04 Jun 2021, 6:52 pm

To get my diagnosis removed, I asked for a second opinion and was seen a psychiatrist who conducted the gold standard autism test referred to as the Autism Diagnostic Observation Schedule (ADOS) test where I scored neurotypical on all aspects. The test was conducted by a professional psychiatrist.

If you want to get re-assessed, I would simply book a GP appointment and ask for an autism re-assessment, although there may be a high waiting time depending on the area so it is best to start sooner rather than later.

Whilst there are people with a genuine case of autism, I believe that there is an incentive for schools to get students a diagnosis, whether it's for funding, Ofsted inspections or to make SEN departments look good. I believe that we are now seeing cases of overdiagnosis of autism amongst the younger generations.

I believe that there were two reasons for my diagnosis. Firstly, the fact that I grew up amongst challenging peers where bullying was commonplace which made it look like I had difficulty in making friends and where my social confidence dropped. The other reason being is that I was very good at maths.

I think that any neurotypical in that position could look like they have Autism due to these circumstances. I believe these circumstances were never fully taken into account during the assessment. However, it's near impossible to prove that I didn't have any symptoms at the time as I'm no longer a child and the evidence is nothing more than a subjective opinion.

I'll have to wait for my medical records to be received before I can fully determine why I was misdiagnosed. Thanks for offering for your assistance Steve, I'll try and post updates.



CollegeGirlAnon
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05 Jun 2021, 5:46 pm

Honestly I would talk with a lawyer or the UK equivalent.

Would you be looking to get money for the negative impact of this?


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apex116
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07 Jun 2021, 11:10 am

I do need to find a lawyer, I don't have lots of money so would need to go for a no win no fee. I've tried that route and based on the chances, the firms would not support me. It's simply very difficult to prove psychiatric malpractice in the UK.

Yes I am looking for financial compensation.



starkid
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18 Jul 2021, 11:48 pm

apex116 wrote:
Yes I am looking for financial compensation.

What are the damages you intend to claim compensation for?