Going through the process of getting diagnosed - worried

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

    thank you for your reply’s all have been helpful.. just feeling a bit lost.

    yes there are other GPS at the surgery and the one who referred me and who I trust is still there but I was told I can not see them anymore. They have told me I have done nothing wrong it is just a decision made at the surgery. I find meeting new people hard but they did give me my old dr. My old doctor made some mistakes many years ago for my physical condition which had a big impact so I don’t feel great seeing him.

    i didn’t kick off but I did complain when they moved me to my old doctor so if I ask to be moved again I’m worried they will stope treating me and I will have to find a new dr. I will struggle with that. I don’t like the waiting rooms I find them noisy and the lighting is just stressful but my old GP used to let me check in on the machine and then go wait into the corridor, she knew where I was and it was no issue. It was her who suggested once I go wait there. My dentist also is great, she has no idea I have issues well that’s probably not true I think she may suspect as she has commented on she will no where I am sat when they come to call me in, she also comes and gets me herself if it’s not the normal nurse. She explains everything to me really simply and I trust her. It’s strange really as it’s. Like she just knows yet neither of us have said anything.

    sorry to ramble 

    thank you again 

  • Thank you for been so understanding and kind

    on my discharge letter she had wrote that I don’t like upsetting people and that is something I worry about so she would have known I was upset. She wasn’t rude or aggressive to be fair and she didn’t just hand up on me, she told me she was going to.

    i am too quite a straightforward speaking person but over the years I have managed to sort of adapt, it’s dificult to describe but it’s like I put on an act when out. I have learnt some responses/ what is expected of me so I can normally fly under the radar. I do also think it’s odd people ask a question they don’t want answering but I have got used to it and sometimes do it myself as that is seen to be the done thing. It does make me chuckle though when I hear somebody going into great detail about how they are when somebody asks, serves them right for asking if you ask me lol.

    i do appreciable you saying you don’t think it is my fault upsetting the nurse I just feel bad because I never got the call back I was promised so I can’t apologise again and check she was okay. I also don’t really want to complain officially if it is going to upset them. I just wish the letter had said you are discharged and the next steps are........... I think them I would no what was happening and when to expect a call or appointment. As it stands I have the autism letters which the GP who understands me arranged but I don’t really understand them. I’m not stupid or think but do struggle with things if not in a structure I understand. At work I was really successful as I used to put things together in logical ways which used to help others outside of business which meant more business for the company I worked for, I just wish I could decode these letters.

    i was too embarrassed to tell anybody when things got bad about 18 months ago so isolated myself so it would be difficult for me to get somebody to come with me, it’s strange I have said more to strangers on here than people I know.

    I feel bad saying this GP doesn’t understand and I don’t think I made it easy for him, he was my doctor many years ago and I have a physical disability (nothing too bad) but he made some bad judgments so I don’t really trust him and I think he knows this and it makes it hard for him. The GP that gets me is still there but won’t see me anymore all they will tell me is I have done nothing wrong and not to worry it’s just a decision the practice has made, I do feel everything is against me but I need to realise there are so many people worse of than me so I should just get on with it.

    hopefully somebody will call me next week with a date for an appointment or something, thank you again for been kind x 

  • 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.

    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:

    1. Support on parenting
    2. diagnostic support and post diagnostic guidance
    3. Mental health and psychological support 
    4. Guidance on comorbid conditions 
    5. employment and the workplace
    6. Benefit entitlement
    7. relationships whether with family or romantic
    8. accessing services
    9. etc etc etc

    are there any other GPS at your local practice? Again that is asking you to bend, rather than them Disappointed

  • 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

  • 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 

  • What a brilliant chart - and how it explains the path I've been on over the last few months.

    It started in April with the greatest anxiety (panic attack/meltdown) that I've ever experienced.  Determined to do something about it (and knowing that ASD was the underlying course) I went to my GP at the start of May and he agreed to the referral (elation).

    After that I could not work out why I started to feel so bad but this chart explains in wonderful clarity the sort of thoughts going through my mind up to the lowest point (early July) when I realised I needed to seek help.  That came with the opportunity to talk with others both at local meetings and online in this forum.  The acceptance has only happened at the start of August - and that's when I really started to use this forum (so, so valuable).

    If you've been referred and/or on the waiting list it's worth waiting a while.  You don't have to make any decision now.

    And don't worry about what others think and taking somebody with you to the assessment.  Firstly, if you haven't told anybody then they won't think any different about you than they did before - they haven't changed.  Secondly, the other person would be somebody who knew you as a child, and not everybody has somebody with that knowledge - and it certainly isn't mandatory - so, again, don't worry.

  • Hi,

    It can take a different amount of time in different regions throughout the UK. However you can withdraw at any time. Something i found useful was the Fisher Change Curve, which shows you how many feeling are normal when we look to a change in our lives. It also helps to show how there is an end point, and that if we have a down day thats ok, as its all part of the path to a better understanding,

    (Its also a great chart Slight smile)

    I have added a link with more explaination, but its a great tool for helping understand that worries and emotions are anormal part of the process

    https://www.c2d.co.uk/techniques/process-of-transition/

    Also the NAS site has some great information about the whole diagnosis process

    https://www.autism.org.uk/about/diagnosis/adults.aspx

  • Thank you for your reply

    one of the things that is putting me off and wanting to pull out is the length of time and this is one of the things you have confirmed. I am also concerned about what you have said with regards to finding out how others see you, that really worries me.

    i think where you said about been yourself is great as that’s all I want but can’t see that happening, I think it is because I have put on an act for so long. I am also not sure who to take with me as I haven’t told anybody about my referral 

    i totally agree with writing things down, I write things down a lot and draw diagrams / flow charts to get my head round things 

    x

  • Thank you for your advice - I’m so glad your son is happy and the diagnosis has helped. I am sure that it will help me too and some days I feel like that and other days I decide that it will make things worse. I’m sure the nurse is sick of me as I call and leave a message for her to call me back so I can pull out but when she calls me back I start to panic and don’t answer.

    i was at my last job for 10 years before everything went wrong and after a year off I found another job against my drs advice, I’ve proved him wrong and coped well for about 7 weeks but I feel I stand out here as the company is smaller. My manager is a nice person but I would never tell him about this. Today before we left he threw his phone and started swearing which everybody else ignored but it really shook me up as it scared me a bit. I feel so stupid as he is just stressed and wasn’t aiming it at me but I’m worrying about going back 2moro - silly really

    The help your son got sounds good but this hasn’t been mentioned to me or if it has I have not taken it on.

    thanks again the advice u have given has really helped, I hope u son & u stay well x 

  • Hi,

    I got a diagnosis last year at 33. I found the process a little long winded (Took around a year from the very first appointment to the final diagnosis) but well worth it,

    Some of the points I found to be the most important for me, and why I would recommend the experience:

    • It tied together so many loose ends that didn't make sense on their own, and gave me a point to start looking at adapting my world, rather than treating my issues like an illness or depression,
    • I learned how I appear to others - part of the diagnosis was looking at eye movements, how I responded, how I deal with feelings and issues, in a way that I felt comfortable with. I have spent so much time and so much energy in fitting in every day, it was very interesting to have someone trained, assessing the 'hidden' me, and being perfectly ok with it,
    • I got validation for myself, and a belief that I do not have to pretend to fit in, and I have a right to be allowed to be myself. Its not an issue that I do not understand how people are feeling, or if they are joking or being serious. And now I have a way of explaining why I am confused, rather than pretending I am not and feeling lonely amongst people
    • I got to attend a great 6 part course with 7 other ASD diagnosed people that opened my eyes and allowed me to share things I am just not able to with even my closest family - It was very cathartic, and it has helped me to start to come to terms with some of the ways I struggle with my wife and kids, and also how to explain it to them
    • I was able to have an appointment where I took someone close to me (I took my wife) and the doctor was able to see how we function together, and how we both impact on each other. It was amazing for my wife as well, as the doctor was able to help explain much more eloquently than I ever can, and suggest different ways to do things.

    Also, what I have found the most important - I have learned that I am part of a group where we are all as different to each other as everyone else is. I am not a person with something missing, but someone just wired a little different, and although I have many issues and struggles, I am ok with being me, and as long as I know that, I can get by.

    (Also I have found it feels good to write stuff down!)

  • I'm so glad we are able to help you and that you have us to talk to. My son too felt like life was one big act and that no one got him and to some extent it still is as so many people don't understand what autism is. They say to him, 'you don't look autistic', which makes him a little angry as no one does as its not a physical look or what they expect and because like you he put on an act. He's happy he's autistic and doesn't want to be ordinary but he does want more understanding from the ordinary people. Luckily it is getting more publicity now but it still has a long way to go. 

    I'm so sorry to hear about your job and the manager not being able to support you or understand you. One of the best things about obtaining a diagnosis is that you should be able to get specialised therapy which really helps. After my son's diagnosis he was offered therapy at the same location to which he agreed to because he has always wanted it but for the right reasons (i.e. not for depression or PTSD etc. but for autism). It is helping my son a lot and this is where he has learnt to say no to people and situations. That is it right to say 'No' if you do not want to do something that you don't have to fit in and act ordinary. It's showing him that it is right to be him just as he is. I hope if you go for it you get this help too and it really benefits you.  

  • Thank you for your reply, hearing about others does help.

    I feel I agree with lots you have said, I struggle saying no and spend time with friends feeling so uncomfortable just wanting to be at home. I am also angry nobody has helped me before as school was a nightmare for me.

    I feel my life is one big act, everybody thinks I am quiet and very laid back which is an image I have worked hard to portray but little spo they no how stressed and anxious I really am. I found a job with a really good manager who seemed to understand me and I was very successful, unfortunately she left and my new boss just didn’t understand me and I just fell apart and ended up been too ill to work. I am so frustrated I am not able to express myself.

    This is really daft but I have said more to you about how I feel on here than I have ever said to anybody else, I guess it’s because you get it.

    thank you again x 

  • thank you for replying

    reading the replies are helping me think about what I want but I am so confused and nervous about the outcome. When my GP mentioned autism I felt a bit relieved but since my referral was accepted after an assessment with the MH team I am getting really stressed and feel I have no where to go for help.

    your response has been a help, it shows I’m not the only one 

  • Thank you elephant in the room x 

  • My 28 year old son has just been diagnosed and I was over the moon as he finally now knows what it is after many years of trying to find out what is wrong with him. I say wrong with him because that is how it was looked at by the medical profession and himself. He has gone through so many different diagnosis's such as, depression, PTSD, Anger issues etc. When he was finally diagnosed and came out of the appointment he said he didn't feel any different other than he was angry that it hadn't been picked up on when he was a child as school was so horrible and difficult for him. As time has gone on he is now very glad of the diagnosis as he now knows what he is and can explain to people why he doesn't want to socialise with them sometimes, and why he seems strange to them. It is making his life easier and much more controllable. The best thing he has found is that he can now say, 'NO' to people and situations and not feel forced into being in a situation that he finds intolerable. All in all it was one of the best things to happen to him. He is a lot calmer and a lot more in control of his life now. As with you my son also prior to the diagnosis went through his life coming crashing down around him where he had to give up work also. Everything had to stop to figure out what was wrong with him. He actually figured out he was autistic himself hence going to the doctors to arrange testing. Now he is starting to build his life up again. 

    Only you can answer if you should continue or stop, I guess you have to figure out what would be the benefits for you to obtain the diagnosis and is it worth it? Speaking for my son it was definitely the best thing for him to do. 

  • Welcome to the forum

    I'm 59 and at the same point as you having been referred by my GP at the start of May - but that's when the stress and anxiety that you describe started to get worse.

    In my case I was fortunate to find local "autism hub" meetings and going to those has helped me come to terms and accept the condition.  In turn that led me to start using this forum both to ask and respond to others - and that has really proven to be a great resource.  The simple ability to talk to people who "just know" (whether in real or online) is a great help.

    Like others I need the formal diagnosis to help explain who I am and why I have felt different for my whole life.  But also, by talking with others I can learn coping mechanisms or strategies for everyday life where the challenges are hardest. 

  • Welcome

    I have just been referred by my GP for a referral after a year of being a member on the forum and a self-confession self diagnosed woman on the spectrum.

    I am seeking the diagnosis for myself, I take this as my personal journey...I am not doing it for validation or acceptance from others but for self-validation.

    From understanding the way that I mask my behaviour and compensate for the areas that I struggle with on a daily basis was key to my understanding.  Why at the age of 43 have I made that decision? I go to the point where my masking strategies were beginning to waver and as a result more and more of the autistic me became apparent.

    https://digest.bps.org.uk/2017/10/18/the-concept-of-compensation-makes-sense-of-several-autism-puzzles/

    I am proud of who I am and the skills and abilities that being on the spectrum affords me. Yes, the challenges can be frustrating at times though!  It is worth holding onto to the fact that we are all made up of abilities and deficits and this is what makes us who we are.

    Each of us unique, but certainly not substandard!