Published on 12, July, 2020
Hi
im new to online forum things so sorry if I shouldn’t be writing on here.
i am 38 years old and have always felt different, life felt like one big act which can be very draining.
Recently everything seemed to come crashing down and I have had a really bad 18 months, things are getting better now but my GP who is very understanding felt that I maybe autistic. This didn’t come as a surprise as it has been mentioned to me in the past, however after hospital visits and reading documentation sent I am getting stressed.
i have been online to learn more and am finding some are saying a formal diagnosis is a relief and others are saying it is the worst thing they have ever done. I am now scared, stressed and constantly worrying about this. I am hoping some others who have been through this can help me decide if to continue or stop the process.
any help would be really appreciated
thank you in advance
Hi all
i just wanted to say thank you to all of you that have replied with advice and your stories, they have all been really helpful.
i am sorry I didn’t respond straight away to everybody I ended up having a bit of a meltdown and anything I would have replied wouldn’t have been constructive.
This is one of the reasons I was unsure if to continue with the diagnosis. My GP who 1st raised her suspicions ( if that’s the right word) is really approachable and I’m sure she would put my mind at rest but I unfortunately have a new GP who just doesn’t get me and referred me to mental health nurses. I didn’t understand why I was there and felt I wasn’t getting anything from seeing them. They said they didn’t know anything about autism and that was the last time it was mentioned. They said they were going to discharge me and I just thought they had realised that wasn’t the help I needed. I was fine with this until I got a letter discharging me and it is just full of what I believe to lies. I found this really distressing and wanted this changing on my records so I had to contact the hospital. In fairness to the nurse she called me back herself to go through what she had wrote, she even agreed to change a few things and said maybe she misunderstood. I am not a shouter and can not really argue so the conversation was fairly calm apart from some frustration on my part but the call ended abruptly with me been accused of offending / upsetting the nurse.
I do struggle to understand people’s feelings but I do feel it when I have upset somebody more than others so always do what I can to avoid upsetting somebody. I feel I did nothing wrong I just explained what I disagreed with and I was told you have offended me. I apologised and said that was not my intention and tried explain why I was upset and again I was told she was offendended. I again apologised and said that I didn’t know what to do as I wanted to complain about 5he inaccurate records but everything I raised she said she was offended, I politely asked how I should complain as not to upset her and she said she was putting the phone down and will get somebody else to call me back. Nobody called me so I just feel lost.
All I want is somebody to talk me through the diagnosis, my symptoms and what will happen moving forward. Everybody on here has been great but I just feel I should just pull out if no medical person wil help.
All the advise given on here is great but I feel I need reassurance from a medical person I’m doing the right thing. I’m so upset I have offended the nurse as that is the last thing I would want to do and just feel I must be a horrible person and I’m just hiding behind the possibility of autism.
so sorry to rant just lost and needed to get it off my chest x
xiv said:
i totally understand your frustration a desire to seek reassurance from a medical person.
One pertinent function of the forum is that it highlights massively the gaps in services and the needs that we have, such as:
are there any other GPS at your local practice? Again that is asking you to bend, rather than them
I am so angry regards how the nurse has treated you. She clearly doesn't understand anything about autism to have treated you this way. I do not for one minute believe you have offended her that much at all. I am guessing she said this to get rid of you and to not have to change anymore that she has written. How rude of her to put the phone down on you too! Also especially with you apologising and saying you had no intention of upsetting her - this alone should have made her realise to not take it personally. It is not your fault she was upset (that's if she really was upset, my guess is she wasn't but pretended to be), if she was upset then she chose to feel upset and used it to her advantage.
What I have learnt is that autistic people only speak factually, they do not make small talk or beat around the bush to get to the point. Ordinary people do do this and thus some ordinary people can't take being spoken to straight forwardly as some of them can find it abrupt or offensive or attacking. If they do take it in the aforementioned then that is their issue not yours. You did not offend them. My son too finds it very difficult to talk to people on the phone as they never understand him or what he's asking for and he gets very frustrated when they do not answer his questions or if they beat around the bush or answer with a question. Also if they ask a question but it is spoken as a statement he doesn't get what they mean. So he too needs straightforward talk. This could be why you feel you don't understand their feelings. When my son asks a question he expects an answer and if he is asked a question he expects the person asking it to want a correct answer. So when someone says, 'hi, how are you' he will tell them exactly how he is. I told him ordinary people don't actually want to know how you are and that it is just a saying. He was so surprised to find out that ordinary people ask questions that don't require an answer. This really threw him and he said he just doesn't see the point. Why ask a question if you don't want the answer.
So with all I've said above I'm hoping that it helps you to understand a little bit more oh how I do not believe you were wrong in how you spoke on the phone but perhaps were only misunderstood. That said you have the right to complain to the Information Commissioners Office https://ico.org.uk/ regards your medical records and any personal information held by any organisation about you to get them changed/corrected etc.
It sounds like you need someone i.e. family or a friend to come with you to these appointments to help you get things sorted out. I hope you can find someone to help. Also, you can change doctors again if this one is not helping you. For my son we changed several times before we found one that fitted. She was fantastic and applied for his testing straightaway - he got an appointment 3 months later.
Regards your GP, they tend to tell you to try many things because they don't really know what is wrong and perhaps your GP doesn't know anything about autism. You will need to insist that you are put forward for testing and not let the GP push you down different avenues. If you go for testing they will talk you through the diagnosis, the symptoms and what will happen moving forward. In testing you will see a psychologist who will ask you about your life growing up and how you deal with people and the world. It is nothing to be scared about or anxious over as it is just like having a chat. The psychologist tells you at the end of the meeting what the diagnosis is so you find out straightaway. Don't let the lack of medical support put you off, trust in yourself and follow through if that is what you feel is best for you and your future. Put you first.
Hope this helps :) xx