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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.

  • in reply to Literal_Joe

    Thank you - I really appreciate you outlook.

    I find myself asking (of myself); anything less than that approach: wouldn't we be self-perpetuating stigma?

    Yes, there will be discovery, advocacy and a period of learning to grow into finding the optimal ways of doing things to best support yourself (now that you better understand the origin of an adaptation).

    However, "...that's the way it's going to be."

  • in reply to VLD

    I am formally diagnosed, and it's definitely a good thing. I went private, but shared the report soon after with my GP. I'm proud of the diagnosis, and don't fear it like many do.

    The way I see it is - I'm still me. Take it or leave it, but that's the way it's going to be.

    Not only does my diagnosis help me to understand myself, it assists with understanding various behaviours of my past

    In addition, it helps me to explain this to others, which in turn should help them in their engagement with me

  • in reply to McFrost

    I'm not sure if says it, but anything the NHS pays for will be visible. Outsourcing to a 3rd party won't change that. The contract is between the provider and the NHS so they will get the report.

  • in reply to Roy

    Thanks Roy, that final sentence seems to answer my question fully. Would you mind telling me where you found that on the NHS website?

  • 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.

  • 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. 

  • There are pros and cons to an official diagnosis, it would help if you need reasonable adjustments in the workplace, for me it was mainly just knowing definitely why.

    Right to Choose is available only in England, not Scotland or Wales, it is still funded by the NHS so I imagine it would go on your medical records. The process is normally started by your GP. I found this on the NHS Website.

    Any referral or assessment related to autism, even through the "Right to Choose" process, is considered part of your medical record within the NHS. 

  • in reply to VLD

    I don't know if there is anything right now that would cause a problem but I am kind of looking ahead in a slightly paranoid way at potential for future discrimination. As a white, cisgender, heterosexual male, I am well aware of how such worries might be perceived by others, but that doesn't make them go away. I have the ability to worry about almost anything.

  • Just what I am thinking. Is there anyone here who has had a formal diagnosis and can say if it was a good or bad idea?