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I don't really know what i'm doing on here...

Steppyhen

Hi, I'm a 26 year old male who was diagnosed with Asperger's Syndrome in December last year.

I feel so confused and i don't know what to do or who to turn to or even the right questions to ask.

My diagnosis which took just under a year altogether, from my GP telling me there's nothing wrong with me, to me speaking to someone from the primary care of mental health team during an appointment about having counselling, who then sorted out an appointment for (I think) an initial assesment and then a 2 hour assesment recieving the diagnosis.

After my diagnosis I guess I put it to one side and didnt really tell anyone and I went about things the way I did before the diagnosis (work, home etc.). In the february I had a follow up appointment with the Doctor and Occupational health specialist that I saw when I was diagnosed, just to ask any questions etc. After this I went down hill and I have been signed off work since the end of Feb as my thoughts were very dark and I was incedibly confused about myself.

I am still very confused and I feel very lost, no-one seems to be able to help me and it's incredibly disheartening just how little people know about ASD. I think I'm expecting too much from the world, to be given some sort of instruction manuel on how to be me, the REAL me, not the me that I have lived the most of my life trying to be, the guy who is a bit strange, a little odd and doesn't quite fit in, but if I try hard enough that'll all change. I know that is not the case now, I know I'm not neurotypical, but i guess i've just conditioned myself so much over the years that I don't know who to be or how to be anymore.

someone from social services (I think) is coming tommorow but I'm not expecting anything good to come from the meeting.

I developed a negative outlook on life a while ago, that way I can either be right, or pleasently surprised.

I...don't even know if this essay i've written is just a waste of time, for me and whoever (if anyone) decides to read this. Pretty much anything would be helpful. keeping my mind off it has brought me down, yet thinking about it gets me no where.

I apologise for any spelling mistakes I may have made and I know I said that the GP said there was nothing "wrong" with me, that is not to say that I think there IS something wrong with me or anyone else on the Autism Spectrum because I don't believe that at all! I just didn't know how else to put it... If someone could suggest a different way to put it I would be extremely greatfull, especially as I find it hard to talk to people about it anyway and I wouldn't want to say something that makes people who don't understand have the wrong infomation because of me. I also apologise for this being so long, I didn't set out for it to be this long, and also for any bad punctuation, although I am what I consider to be good at English, it has never been something I have found easy.

Sorry.

  • Hi Steppyhen,

    I am glad you found at least part of my post helpful, I do understand what you are saying. I misread your initial post and thought you were a similar age to me now. Personally I think the age you are now, is the most challenging generally for a person with aspergers.

    I have tried cbt myself, while I can see that could be useful tool, I don't think I am in the right state of mind to put it to much use. I need counsueling, but I think a lot depends on the counsuelor. I have had long sessions in the past which have been helpful. Over a year ago now, I had a short stretch of 10 sessions with a counsuelor and was amazed at how much progress I had made with him. He had dealt with people with learning disabilities before, although I don't know if he was specifically trained for it. He really helped me to express my feelings step by step, and queried body language I was presenting. When I think things are really bad, I shake my head, acknoweldging within mind how bad things are (no it shouldn't be like this), but externally it looks like I am saying no and disagreeing with the points or disregarding the conversation.

    When I took the cbt, I was told counsuelling would not help. I have said elsewhere on this forum, that looking back I feel the best age for me to be diagnosed personally was in my 20s.

    I wish you all the bes

    Random

  • I have had CBT (Cognitive Behavioural Therapy) 6 times in the last 7 years, 4 through the primary care of mental health team and 2 through college, most of which helped for a short time, 1 where the guy was trying to force me to change, one way was he tried to force me to have conversations with random people in the college, another time ha started asking what type of women I like. 1 of the people I saw through college really helped me but he died unexpectedly.

    The Dr who diagnosed me said that therapy wouldn't help me, but in a couple of books I have read people have found it helpful. I understand that it is a spectrum and not everyone is the same but it's things like this that confuse me.

    I've heard people say that they don't want to see a Dr even though they think they have("please insert condition here") as they don't want to be "labeled". I personally dont have a problem with the Autism label, but I guess that's because I've had at least one label since before I can remember.

    I think I'm finding accepting who I am hard because I don't know who I am, I thought I did for almost 26 years, then it was like someone said don't be stupid, that's not who you are... they just gave me a name and said that it doesn't change who I am. I don't know if I'm having some sort of identity crisis or what, my illnesses made things difficult, I mean it's hard to do your GCSE coursework when you're in hospital because your Asthma is playing up, but this makes all of that look easy.

    I hope to one day be like your friend Steff, I guess part of me is just feeling sorry for myself and wanting it all to be easy, which probably keeps alive a part of me that's in denial?

  • Steppyhen said:

    If like me you're not good at that sort of thing (phones, I can make a Doctors appointment but I cant do much longer than that as I seem to get confused and get walked over),

    I can relate to that. I can make a straight forward phone call with a specific objective such as a Doctors appointment or renew some library books (although I don't enjoy it). It is when the phonecall becomes more complicated and the conversation unravels. Negotiation and discussion can end up with me also walked over. The phone call ends and I just don't know what happened.

  • I am so sorry to hear that Random and yes in a way your reply has helped in some ways but not in others as I hope you understand when I say that now I know I'm not the only one.

    I also have Asthma, Epilepsy, Depression and Anxiety all of which I am on medication for even though Anti-Depressants have an effect on my Anti-Epileptic drugs and I also take Vitamin-D, which is prescribed, as 2 of the medications i take for my Epilepsy can cause Osteoporosis. It's all fun (sarcastic)

    The reason I have been off work for such a long time is because I have been going to see a different GP to my own and I have tried to explain my thoughts and feeling and the fact that I broke down in work and I am currently "off sick". I have had 3 sick notes so far and I will be returning to see him in a few days as that's when my current one runs out.

    Maybe you should contact social services? I'm not really sure how that all works, all I know is that my Mum kicks butt, because we hadn't heard from them she got the letter/report that we recieved after my diagnosis and she phoned up and asked to speak to either the Dr or the Occupational health specialist that diagnosed me. The Oc Health lady phoned back and she contacted whoever and let my mum know that we would hear from them "within the next 2 weeks" and we did.

    If like me you're not good at that sort of thing (phones, I can make a Doctors appointment but I cant do much longer than that as I seem to get confused and get walked over), then I hope you know someone who could contact them on your behalf.

  • I can not answer from a spectrum point as i am a 34 year old female who has been recently diagnosed with adhd and i am now medicated (works a bit) but doesnt stop me being me and i am most deffinately not neuro typical :) i had come to accept this years ago though as i like who i am and i am lucky to have a very supportive family and two children to focus on. One which i believe is on the spectrum and with Camhs at the moment.

    I can also offer an insight from my friend who has grown up with autism. He has most deffinately accepted himself and i think that may be the key... there is no normal. everyone sees things and reacts to things differently and i think that making peace with yourself is the most important thing you can do :) xx its not an easy thing to do and i think if you are suffering a little with depression maybe some talking therapy might help?? id be tempted to ask for it x

    hugz to you hun

    steff

  • No need to apologise, to me sounds like you are suffering from depression, I can relate to a lot of what you have said. I was diagnosed last August at 49, have had a tough day myself. Autism Diagnostic Team have dropped what little support I had left, they referred me to another team who have rejected the referral. I am still in work, but starting to feel I should not continue.

    Support for autistic adults seems to be a disgrace. I am complaining to my NHS trust, and am getting assistance from advocacy services to help deal with that. I am hoping it will help me, but also others like yourself who are also suffering from the way the system is set up

    I was referred to social services for a support worker over 2-3 months ago, and have not heard a thing.

    I would be interested to know how you went about signing youselft off work for a long period ?

    I hope my reply has helped in some way,

    Random