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A little lost

xiv

I am  feeling a little lost and have no idea what to do.

I was diagnosed as an adult after going through a difficult time about 5 years ago, the diagnosis came out of the blue and was a bit of a shock but having had time to reflect it makes complete sense. It seems I have masked through childhood into adulthood but after diagnosis I am struggling to mask, it is like I have become more autistic now, i question myself all the time and beat myself up for behaving this way but I continue to struggle.

I am also in the process of getting an adhd diagnosis which again is making things fit into place but I amd finding that I am causing more problems for myself and life is just hard. At times I feel i don’t want to be here and have discussed suicidal thoughts with my GP but sometimes I think its more that I would like to reboot ie turn myself off and on again like a computer but the lines have been blurred and I feel the GP always goes back to when i was suicidal and assumes my problems are mental health related. I have a physical disability too but since my autism diagnosis this seems to be ignored but also I feel the fact I am autistic is also been ignored.

I am sick of feeling like I do and also not having the energy to mask and from looking online I think that I am going through what people describe as autistic burnout but I am not sure if this is something that lasts as longs as it is for me, so maybe I am wrong.

I find I struggle to advocate for myself in almost all circumstances and the more I get misunderstood the worse it gets. I am currently having a get issues with HRMC, water company and the GP which has gone on for ages, simple things have grown into bigger things and its like nobody understands me. I don’t tell people I am autistic as felt it was like i was playing some sort of card but in the 3 scenarios mentioned I now have to see if i can get some help. Unfortunately whats happened is that it seems to have made things harder, the GP for example obviously knows about my autism but wont make any adjustments for me. I am not asking for much or I dont think I am - I just want the same GP (when possible) I want them to explain why I have all these hospital appointments and what they are for and just listen to me and actually check back I have understood. Since I have actually asked for them to take my autism into account they have said I will ahve to see a different doctor each time, the doctors i have seen are not aware of what the hospital letters are for, they have given me medication that if I had taken I would have been seriously ill and on the last visit the doctor locked the door. She never said she was doing it but I saw her and started to panic. She said it was clear i was distressed and said it was okay to leave so that meant it was a wasted appointment. The issues with Water and HMRC are getting me so stressed and I just feel like I am stupid because I don’t understand and they wont explain anything to me.

Not sure what I am really asking here I think I just want to know if anybody else felt more autistic after diagnosis and did this change?

I honestly feel like I cant cope with day to day life which I managed until diagnosed, will life get better or is this me now 

  • in reply to xiv

    I would be tempted to make an official complaint to HMRC. They should not have treated you like that. That said, it's pretty much impossible to get a positive response from them.

  • in reply to Kate Kestrel

    I agree they should understand but I know that I haven't behaved badly so I just have to think it is them. I do worry that they will be treating others the same and they are not coping as well as I am (not that im coping great) I think the surgery has no understanding 

    Im the same with emails. I guess you know the EHCP is important and probably want to get it all sorted for your son but if you need to be in the right place to sort to make sure he gets what he deserves. I can imagine you get stressed with it.

    I dont tell people about my autism but I did with the HMRC as the bill I had been sent was wrong, it was a mistake they had made but they were not listening. The guy seemed to just read of a script and kept laughing at me. I told him hoping he would explain why he thought it was right and he just told me not to worry my little head about it and it can be complicated followed by continuous sniggering. I have just paid the bill they have asked for and when I fell able I will try for a refund.

    Thank you again for your support 

  • in reply to Luftmentsch

    Hi

    It is about 5 years for me now. I am lucky compared to some and have a really good life compared to some but  even though I am 5 years down the line I don't really tell people. The ones who I have told have all said that it makes sense, makes me wonder what they thought of me before the diagnosis and just didnt say anything.

    My GP surgery has been fantastic over the years with my physical disability and then after my autism diagnosis they gave me a new GP which I found really difficult so a family member came with me until I felt comfortable with her. I was struggling with lots back then so had quite a few appointments but I now maybe have 4 a year max, so I know that I am not one of those causing problems by going all the time. I thought the new GP would talk to me about my autism but she never really mentioned it and I felt it was brushed under the carpet, I also felt that I left appointments still unsure about things because she didnt check back I understood. When I think about it she changed nothing to help really. Now they decided I have to have a different GP each visit which in my opinion would lead to more appointments due to confusion but I have decided to try and manage things myself.

    When things got too much at the gp surgery I paid to see a private GP and he felt they were not treating me well and also felt they were missing something that was obvious. He suggested ADHD, he thinks that some of my Autism traits are fighting with the ADHD ones and visa versa - Well thats if I understood him right. I am on the list for an assessment if I have ADHD there is some medication that could help apparently 

    You could be right in what you say about me been more aware, I don't think I am less willing to mask its more I don't have the energy to do it. Prior to getting ill 5 years ago I seemed to manage really well and sometimes wish I hadn't been diagnosed.

    Thank you for your response it helps knowing others understand 

  • in reply to xiv

    I’m really sorry - it sounds like the situation at your GP surgery has been massively stressful for you. I don’t think people always understand that when autistic people get really stressed things are feel very intense for us and our behaviour can be misinterpreted in any number of ways. But they are Doctors for heavens sake! They really should understand that! 

    I put things off a lot of the time too because I just can’t face them. I’ve got emails in my inbox now about my son’s EHCP that I can’t look at until my stress levels come down a bit. But I can only retake so much and sometimes I have to give myself the time I need so that you don’t get completely overwhelmed. Putt8ng things off often leads to more problems though. But what can you do? You can only do your best and try to take care of your health as best you can. There really should be understanding in organisations about the fact that autistic people can’t always cope with things and need adjustments etc. 

    Anyway - good luck!

  • in reply to Kate Kestrel

    Thank you for your reply it makes sense and good to hear others feel the same.

    I moaned a bit at the doctors so the manager said the gp wouldn’t treat me anymore. I wasn’t rude or anything. I said I was sorry if I upset her and this was passed on but she still refused. She gave some other excuse saying she wasn’t helping etc . I apologised again and asked if I have to have a different one could I meet them and they said I have to have a different one every time. They said they took my autism into account and came to that decision……. Urm not sure they did. I have decided that I will just order my medication and never go again. I know how to manage my conditions so should be fine.

    your right re the other organisations just been faceless. It’s so difficult. My family get anoyed with me because I put things off that I know will be hard and then things get worse.

    you are right when you say pace yourself. The problem is I always try to do everything or I do nothing. I get nobody can help me with that and I just have to work on it.

    thank you again for responding I wasn’t sure I really made much sense on my post 

  • I’m not sure how old you are. I think at different stages in our life things can become more difficult - for various reasons. I also think getting a diagnosis can impact in both positive and negative ways. Do you think it’s possible that getting a diagnosis might mean that on one level you’re more able to acknowledge to yourself how difficult you find many aspects of day to day life? Or perhaps you’ve lost some confidence for some other reason? Life events, or relationships with others? 
    By the way I also find so many aspects of day to day life very difficult - I don’t think that’s at all uncommon for autistic people. I’d say it’s normal if you’re autistic. 
    Re. your Doctor and seeing a different Doctor all the time - if I were in the same situation I would write a letter to the Practice Manager and explain that you’re autistic and due to this seeing a different Doctor every time is extremely difficult to you. Autism is a disability and you are entitled to reasonable adjustments. I would put forward the argument that this issue is beginning to act as a barrier to accessing healthcare as it’s putting you in the position where the stress involved in seeing so many different Doctors is making you reluctant to access the care you need. This situation could negatively affect your mental and physical health. Request that a Reasonable Adjustment - that you can make appointments with the same Doctor each time - is made for you as a disabled person. See what they say. It might be that in wanting to see the same doctor you may need to wait longer for an appointment of course. But if you’d be ok with that then I don5 see why they can’t accommodate you. But you can only ask. Doing it in writing is always a good idea. 

    As for the Water Company and HMRC - I’m not surprised that would be stressful. Dealing with these big, faceless organisations is very stressful and alienating. Do you have friends and family who are supportive and helpful? I think sometimes chatting about things with others can be helpful. The society we live in is very stressful and not conducive to peace of mind. As an autistic person we can only try and find ways that can make it manageable as best we can. Not easy. Pace yourself in your dealings with these things - take ‘time off’ from dealing with them to give yourself a rest and breathing space. Access any help you can from family and friends. Have you tried Citizens Advice? 

    most of all though don5 blame yourself for struggling - so many people struggle with stuff - and not just autistic people. So many aspects of our society are not Human Friendly - let alone Autism Friendly! 
    Good luck! 

  • I also feel "more autistic" since diagnosis (nearly two years ago). I think it's about being more aware of our traits and perhaps less willing to mask. Also, being on this forum has let me realise that a lot of what I thought were personality quirks are actually autistic traits.

    The way the doctors are treating you seems very wrong. My GP surgery seems to have become less responsive to patients since COVID. Maybe that's a more widespread thing. I don't know why they have the rule about not allowing you to see the same GP each time, although I suspect they don't want good GPs to be oversubscribed and bad GPs to be undersubscribed. My surgery is the same. I'm not sure what you can do to change it. Did you speak to the GP or the receptionist about it? Is it possible to switch to a different surgery (although things may be the same there too)?