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Diagnosis doubts

McFrost

TLDR: Can I get a diagnosis through right to choose and not have it on my medical records?

I am on a waiting list for an autism assessment through right to choose. I should have had it by now based on the wait list times when I was referred but apparently referrals have increased significantly so there will be a delay. Not sure why this would affect my place in the queue and communication from them is pretty poor but I'm not in a rush.

I am however, having doubts about going ahead at all. I was very keen to do it initially but as the months have passed by I am seeing less need, in terms of validation. I am autistic - I know this to be the case. I score highly on every test I do and it explains so much about me. I'm self employed so require no adjustments at work and I don't feel I need a diagnosis to prove anything to anyone else. The main reason to do it at this stage is curiosity and learning more about myself and I think this alone is enough to make me want to get a diagnosis.

I have worries however about this being made official and my medical records being stamped "Autistic" for ever more. I worry about the future and what possible ramifications this could have that we don't currently know about. I'm not ashamed but I feel the lack of understanding from others leads to autistic people being put in a box and considered "less than". I don't consider myself "less than" in any way. In fact I consider myself superior in some ways to neuro typical people - more logical, more observant, more independent. Sorry if that sounds arrogant!

As I am currently completely unable to decide what to do, I guess it comes down to one question. Can I get a diagnosis through right to choose and not have it on my medical records? I don't consider it a medical thing - I was just born with a less common brain type so I don't think it is relevant to my medical records.

Parents

  • I did it privately so my info is not shared, but I told my GP in face-to-face meeting. They asked for the report, but I have not sent it to them yet. Once they have it, it will be on my record and I can't retract it. It am not sure if it means I will then have to declare it on every form in the future 

    It has a couple of things that may be useful and backs up some things I told them. But I am not sure I want to share it. They said I could just share the 2 pages summary letter. But while that keeps some of the details private, it still makes it official.

    I am undecided. I am not sure why. 

Reply

  • I did it privately so my info is not shared, but I told my GP in face-to-face meeting. They asked for the report, but I have not sent it to them yet. Once they have it, it will be on my record and I can't retract it. It am not sure if it means I will then have to declare it on every form in the future 

    It has a couple of things that may be useful and backs up some things I told them. But I am not sure I want to share it. They said I could just share the 2 pages summary letter. But while that keeps some of the details private, it still makes it official.

    I am undecided. I am not sure why. 

Children
  • in reply to Stuart333

    I can fully understand why you are undecided. My concern is about how I might be treated as a result of perceptions of me based on one word. We have seen that it can happen. I find nothing more enraging than being treated as stupid. As, in my own case, I don't require an official diagnosis to prove anything to anyone (work, family, myself) I am wondering if there is any point going ahead at all. I would like to, out of curiosity, but not if it goes on my records.