Confused

Wasn’t sure if to write here or not but I am hoping for some advice.

Whilst I was going through the diagnosis process i kept coming on here and have read over and over again how getting diagnosed has helped in some way and how others were worried they wouldn’t get diagnosed due to NHS not diagnosing in the area. I guess I am one of the lucky ones as I was diagnosed very quickly and this is why I feel so bad.

There seems to be so many people looking for a diagnosis and I have one and don’t serm to be happy. I have been trying to look at the positives but I feel very negative about the diagnosis and am struggling to cope. I am wanting to know if anybody else’s does or has felt the same.

i am sorry if my complaining is frustrating for those who are wanting a diagnosis I do realise I have been lucky 

Parents
  • I have felt like killing myself, several times, after getting my diagnosis and felt mortified, humiliated and utterly distraught at many more times. 

    These occasions usually followed a huge enlightening moment. For example, I remember being delighted that I could view my behaviour in the way many others (nt’s) viewed it. Then I was not only mortified and humiliated but I became suicidal as I realised, that just because I was now aware of it, it doesn’t mean I can do anything about it. And what would it mean if I could? Would it mean I never speak again? 

    It’s been a very up and down journey and I’ve had to dig deep and anchor in and the diagnosis enabled me to do that. Pre diagnosis I at best didn’t have a clue what I was doing and at worse, I was driving people away and hurting myself in the process. It was very confusing and I had no anchor point. I didn’t even think I was a human, because I had never met anyone else like me. 

    But slowly, but surely, with a tremendous amount of support and education from the people on this site and the wider site, reading books, watching YouTube videos, getting support workers and putting my trust in them, the people at my autism group and giving myself the time and space to come to terms with it, I have, but not only have I done that, but I have also come to accept it and love myself because of it or in spite of it. 

    It’s been a little over 12 months so far and I think I’m at a turning point but I’m also taking the next 12 months (or as long as is needed) to work out how I fit into the world, now I know who I am. And my first quest is to work on my health and fitness and building relationships at my autism group and finding things to do that I enjoy and find fun. I’ve got a lot to learn but I will make sure I take my time and enjoy every step of the way. 

    I honestly never expected the roller coaster journey post diagnosis, I didn’t see it coming at all, but I can see now that it’s been a necessary cleansing and learning process as well as one of discovery and falling in love, with me :) 

  • Hi blue ray 

    sorry it has taken so king to respond I have read the replies but today has not been a good day. I’m totally isolating myself and like u mentioned I feel like ending everything. It sound dramatic I know but I feel sort of labelled  with the diagnosis and feel there is no way out.

    i think it is great reading how you all dealt with things different but are now well and accepting of your diagnosis I just wish I could get there too.

    what I am finding is hard Is that I don’t see people as different regardless of if the have a physical disability, mental health issues or anything really so why I’m not accepting me I don’t know

    sorry I’m rambling now, 

Reply
  • Hi blue ray 

    sorry it has taken so king to respond I have read the replies but today has not been a good day. I’m totally isolating myself and like u mentioned I feel like ending everything. It sound dramatic I know but I feel sort of labelled  with the diagnosis and feel there is no way out.

    i think it is great reading how you all dealt with things different but are now well and accepting of your diagnosis I just wish I could get there too.

    what I am finding is hard Is that I don’t see people as different regardless of if the have a physical disability, mental health issues or anything really so why I’m not accepting me I don’t know

    sorry I’m rambling now, 

Children
  • Hi xiv, sorry for the slow reply.

    The way you've been treated at your GPs sounds so frustrating, and it must be annoying not being able to see your old doctor. I recently tried to get an appointment with a GP who was really kind and understanding about my autism, only to be told that she had retired Slight frown

    I've found that if I have a physical problem, doctors are friendly and helpful but if I have a mental health issue or autism-related issue, they are (usually) much less sympathetic and don't always know what to suggest. Taking a family member with you is a good plan cos, like you say, then they can see how you are being treated.

    Take care x

  • There is nothing at all wrong with people being that little bit more patient with others. In fact, that about sums up my life’s work, to help people to have more patience ~ starting with themselves of course. 

    But you told me that the people around you don’t understand you. So unless you like banging your head against a brick wall, it is rather futile to continue down the path of getting them to understand you or continuing to hang around them. To be honest, that’s a mamouth task (to get them to understand you) because there are so many variables, and to be honest, is it really worth it? You would have to spend almost all your waking hours learning the communication and social skills needed, to be able to communicate effectively, as to what it’s like being autistic to a none autistic person. 

    If you really want to be around people who understand you, and I highly recommend it, you need to be around people who understand you. And that would be, other autistic people. Unless you want to spend your life trying to get a none aiutistic person to understand an autistic person. And then what?

    And don’t forget, you would have to be patient with them. Maybe they don’t feel they have time right now or the inclination to put so much of their time and effort into something that doesn’t really have any significance to them? How patient are you prepared to be? Are you patient enough to wait 10 years until they feel ready to embark on the journey to find out what life is like for an autistic person? 

    I’m in the same situation as you. Isn’t it wonderful! It’s like an autistic person’s paradise.  I’ve even stopped checking emails as often and even my son rarely, in fact, never visits unless he wants something specific. 

    I feel so lucky to have friends and family who have left me alone, almost completely, at a time when all I needed was solitude. I couldn’t be more grateful. I have the best friends and family in the world and so do you by the sounds of it. 

    Alas, I’m working towards coming out of my autistic heaven. It’s been three years for me and I’m finding my balance and sadly, I’ll be leaving my autistic heaven of solitude. But I know I wasn’t put on this earth to spend the rest of my life, alone, in my bedroom, although I’d love that, so I will slowly but surely, with little tiny tip toes, begin to venture out into the world again. 

    At the minute, it’s one little step forward and one or two steps back. And that’s ok. It’s like I’m testing the water. I do better when I do things in stages, so that’s how I’m doing it. 

    Enjoy your solitude and rest and don’t make a move until you feel ready X

  • I don’t agree that I should just speak to autistic people if I want to be understood, what’s wrong with everybody just been that little more patient with others ? 

    I like to please people as I don’t want to upset them and if by agreeing to do things for people make them happy then. I see no problem with that, yes at times it can be hard work but I always thought u get back what u give, that’s not been the case while I’ve been in well this time but that’s my fault. Without going into it something not very nice happened and I struggled to deal with it, I became unwell and decided to not go out anymore. Over the last 12 months I stopped answering phone and replying to messages, been in my own was easier. My friends now don’t call or text, in fact they are probably not friends now as I made no contact.

    i have one family member and one friend who has stuck around however I am making excuses not to meet my friend so she will disappear soon. My family member who has been offering support has got frustrated with me and I stopped been nice and more or less told her to do one, yes I know it wasn’t nice and that really isn’t me but things are just getting on top of me and I’m struggling to cope.

    so I guess everything is all my fault 

  • You can expect people to get you, if you like feeling upset, angry and stupid, because that seems to be how you feel when you expect people to get you and they don’t. 

    If you don’t want to feel upset, angry or stupid etc then simply face reality ~ people don’t get you ~ accept it. That way you are free to go and find people who do get you, such as other autistic people. 

    If you spend most of your time trying to please others, then you can’t have very much time and energy left for pleasing yourself. That doesn’t sound like a very good strategy for life. If you are going around pleasing others, and therefore not looking after yourself, you will quickly burn yourself out and end up feeling depressed and unappreciated.  

    How have you pushed people away? If you  spend most of your time pleasing other people, being polite to them and never rude, how have you managed to push them away? 

  • Maybe I shouldn’t expect people to get me but I’m just sick of saying things getting looked at like I’m stupid only for somebody else to say the same thing and everyone gets it.

    I try to express myself and get told I’m not saying anything and I’m just going round in circles

    I’m not rude infact fat from it I spend more time trying to please everyone and if anything I’m over polite, what I have noticed is now I’m struggling and pushed everyone away they don’t Care I don’t even think they have noticed. My one family member who knows what’s going in new I’d took too much medication and told me to crack on so I guess disapointed it didn’t work

  • Most people are not going to get you. Think about it. You have been autistic all your life and even you didn’t know, you didn’t get it. We can’t expect other people to get us, especially when we can barely get ourselves. The best we can hope for is to take some time to understand ourselves and at some point, we might get better at expressing ourselves so people can better understand us. 

    My son and cousin told me I was pushing everybody away and all the time I honestly thought I was trying to get closer to them. I am often rude to people.  Prior to my current level of awareness, I didn’t realise I was being rude, now I know I am yet I still can’t do anything about it. It doesn’t matter to me any more that I appear to be pushing people away or that I’m rude on purpose because it’s not true, that’s just how it appears. 

    I know the truth but I’m unable to communicate that to nt’s, so I accept therefore that they’re not going to get me and it’s better I’m not in their company, because there is something about the interaction that makes me behave in a rude way. 

    Instead of worrying about whether people get you or not, if you want to be understood, come here or talk to other autistic people. The rest of the time, just do what you need to do with nt’s as best you can and leave it at that. 

    If the doctor was horrible to you, you can be pleased now because it’s over. You don’t have to keep listening to your thoughts if they keep repeating the incident in your mind. Just say something like, thank you, I know all about that incident, but it’s over now. 

    Try and be patient with yourself and the people who are trying to help you and don’t get upset if people don’t get you. Even a lot of psychiatrists don’t really get us. It’s just like how we don’t get them. I don’t know if it’s truly possible for one to get the other. But we get each other on here and it’s a good idea to get other autistic friends. 

  • Thank you, your so kind,

    reading what you say is like reading my thoughts but put in better words. It is good to see others have felt the same and like you said come out the other side.

    your right where you say about the thoughts and it’s just your feelings are just more than you can cope with, that’s how I feel.

    whats not helping me is that I feel nobody gets me and I’ve just pushed everybody away. I’ve told one family member who is helping me with dr visits etc but I’ve even been horrible to her so it won’t be long b4 she washes her hands of me. The drs have been just horrible and I feel there is no way out

  • Hi Pokémon go 

    I know you didn’t mean I wasn’t capable, you are right though everything is a little bit overwhelming. I have had some issues at my local drs over last 12 months and all drs have changed when I asked for my old dr I was told I couldn’t have him but it wasn’t anything I had done wrong. I wasn’t getting any answers and I have been treat really bad. Due to this I have got a family member who has been trying to sort it.

    we have found when she goes in with me when collecting prescriptions or to see drs they are fine but when I go on my own they are rude, I thought I wasn’t believed so I made her sit back so it looked like I was on my own and she saw how they are treating me. It is really upsetting as I have a physical disability which requires ongoing medication and visits and they have been great with me, I had no reason to complain. However I get diagnosed with autism and it’s awful, I wouldn’t go in if I dint have to collect my meds ( controlled drugs so can’t give me long term supply).

    things got that bad I took too much medication so ended up at hospital and the drs response was that I’m causing them work, when I looked a bit blank sort of in shock they said I might not be in the surgery but when I do stupid things like that they are informed and have paperwork to do.

    anyway I appreciate your nice comments it helps knowing people understand 

    x

  • Hey, you know if we are at the other side, you know what that means don’t you ~ that we’ve also been through it, we went through the hurt and confusion and the pain and loneliness etc etc ~ there seems to be no easy way to get to the other side but I promise you, that if you stick with it, you’ll get there.

    The truth is, we are all individual beings so we are all essentially different. The only difference with autism is that a certain privileged number of the human race have been fortunate to have been born autistic, which means we have some identifiable traits that mark us out from the rest, but that doesn’t mean that we are the only different ones, we’re all different and you are most definitely under direct orders not to leave your tribe, not ever. You must not leave us, we need you. You’re important to us even if you don’t identify as autistic, we still care about you and you mustn’t make the numbers go down. 

    I also found out that when I’m feeling suicidal, I’m simply experiencing feelings to a degree greater than what I can cope with, with what I can process. But if we allow the feelings to be without trying to work them out or fight them, they pass much quicker. It’s when we fight them that they stick around longer. 

    You’ll get there, I promise you. It just takes time. And you won’t know this, until you get there, but even though it’s hard right now, one day you’ll say that it was all worth it. 

    Hang in there my friend, you’re not alone. I’m sending you an angel to wrap you tightly in her wings and hold you close, to let you know you’re not alone and the storm will pass. If you try, you’ll feel her and all of us on here. You’re not being dramatic, you’re simply sharing with us how you feel and I’m so glad you are because it’s keeping it to ourselves that hurts the most and we’ve all been there. I feel your pain. 

    And you haven’t been labelled, nobody else even needs to know if you don’t want to tell them. The diagnosis is simply to help you to be able to understand some aspects of yourself better. It doesn’t change who you are. You’re still the same person, you simply have a bit more information to go on, and if it’s too much for now, simply put it to one side and forget about it for a while. Just remember to be kind, loving, patient and gentle with yourself, don’t judge and practice some good self care. We’re right there with you. X

  • Also, didn't mean to imply in that last post that you're not capable of doing those things yourself - just meant that it can feel a bit overwhelming to organise that kind of stuff by yourself when you're feeling low.

  • Its really important to get help from someone if you're feeling that way. Do you have anyone that can help you talk to your GP/mental health services?

    I've been suicidal a lot in the past so I know how horrible it is to go through. Things will get better though, promise