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Hi im new to the site 53yrs old male diagnosed with emotionally unstable personality disorder and severe OCD and finally awaiting an assessment for autism or aspergers have done some online tests one which i paid for and scored 43 out of 50 but haven't any idea what to expect from the assessment

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  • Hi Giddy, I like your name.

    Well done you for surviving this life so far. Hopefully now you’re getting some answers you can stop surviving and begin thriving. 

    If it will be helpful to you, you can ask for information (from the assessment place) about the process, the place, for accommodations to be made for you  or you can ask to simply talk to somebody about it if you think it might help you feel less anxious (if you feel anxious) and help you feel more in control of the process. 

    As for the assessment, they generally use a specific tool which in my experience was more like a conversation. The guy who assessed me, knew what he was looking for and when we spoke when he gave me the diagnosis, it turns out he was looking for things I hadn’t even considered ~ he said, that’s because I’m autistic! 

    Who knows what you might experience post diagnosis.  It seems to depend on how many questions you have and how deep they are and where you’re at in life and what you want. For me, it’s been a roller coaster I wasn’t expecting but it’s been the greatest journey of my life. It wasn’t just a game changer but a life saver as well, so I guess for me it was everything but really, it’s just the start. Expect the unexpected. The waiting between the assessment and getting the diagnosis was the absolute worst of all times for me, I wouldn’t wish that on anybody. So I suppose my best advice would be, don’t do what I did, don’t sit alone in silence, talk on here or to whoever you talk if you are feeling the fear or strong emotions, if the waiting gets intense. You are essentially stepping into the unexpected which takes courage and bravery (or are they the same things?!?!) and you are also, potentially, going to come face to face with who you are, so don’t take it lightly. Treat yourself well and with extra care and attention while you’re going through this and be especially kind and giving to yourself. It’s a big step, but you’ve done the hardest step, the next is a bit of a waiting game and from there on, who knows ~ the world is awash with possibilities. 

  • Hi Blueray thank you for the reply and kind words it hasn't been easy especially with the other mental health problems thrown in i read so many times about other peoples experiences saying i always wondered why i felt different and it was very much the same except in my family as my maternal grandparents one was bi-polar the other schizophrenic my mum has issues which meant as kids me and my sister got very little love and emotion my dad was also very distant my sister has mental health problems also so in my family we were all odd it was outside my family that i didn't fit in everyone else just seemed at odds with me i thought everyone else had the problem and we were the normal ones over the years i started to realize that it was us as a family that was odd and its been a constant battle to get a diagnosis and help ..... if you have kidney failure or heart problems or cataracts or a diabetes you get treatment but mental health problems are diseases or imbalances of the brain yet for some reason there is so little help available in this day and age you would expect more but the mental health care in this country is abysmal to take me 53yrs to get to now is an absolute joke but i hope that once i get this diagnosis things will get easier one can only hope

  • Trust me, mental health care in this country is far more advanced and way better than some of the countries I’ve lived in - they make our care system look outstanding. The current care system in this country is moving towards a recovery model but that will take a while as our previous understanding was to try and make things better for people, which doesn’t work, people need to be empowered to make things better for themselves and our current system is slowly moving towards that model but as a society, we have got used to the old model and we now almost automatically give our power away to others and expect them to help us when really, we’re the only ones that can help us and fortunately, that’s the way society is moving now and there is lots of help and support out there although it won’t necessarily be found in the system. Once you get your diagnosis, you won’t have to ‘hope’ that things get better, you can make them better. I only got my diagnosis last October and already my life has changed beyond compare. It doesn’t appear so to people looking in from the outside, but as we know, it’s what happens on the inside that counts and the diagnosis helped me to change that, considerably. I think the majority of us got shown little love when we were growing up, for many different reasons, but when it boils down to it, it’s not about how much others loved or love us that counts but how much we love, both ourselves and others. It’s what we give that holds the most value. You’re still a young man and once you get your head a bit clearer around your diagnosis and get some support, you can have any life you want, within reason and the past will take its rightful place in your mind, in the past. You can leave behind all the bad stuff, keep the good and make your best life yet. Best of luck. Keep us posted. 

  • Oh Giddy, please find a way to distract yourself in a way which is self nourishing and self caring while you’re doing this wait because this wait is nothing compared to the wait between having the assessment and getting the diagnosis. Looking back now, I can see that, there was a point when my autism was at its very greatest during that wait, I thought I was going to die. It felt like I was locked into a self made prison that I couldn’t get out of. I couldn’t reach out for help even though I wanted to. 

    But I got through it and it may not be that hard for you because you’ve accessed this site at a good time but maybe it  just won’t be so hard for you anyway, we are all different. I only found this site after I had got my diagnosis and after I was suicidal one Sunday afternoon. So the support you receive from this site will a great help to you. It’s been a life saver, a friend maker, a family giving, advice giving, support giving,information giving, font of learning and so much more, to me. 

    I worked as a social worker with adults with mental health problems and as a mental health practitioner (a community psychiatric nurse (CPN) who doesn’t give injections) for 15 years. When I worked as a mental health practitioner, I loved the work and the psychiatrists I worked with and my bosses, all loved my work, as I got results, although they didn’t want me to tell them what I was doing because it was clearly (although for a long time, not clear to me) nothing they were doing so I obviously wasn’t following nhs rules etc. 

    When I started work as a mental health practitioner as a CPN, I insulted all the nurses and psychiatrists on my first day on the job. Most of the staff, behind my back, hated me and tried to get rid of me. But the psychiatrists and my bosses loved me and didn’t want to let me go. I was literally advising the psychiatrists and my bosses and sometimes telling them what to do but I was getting results they weren’t. 

    However, despite insulting them all on my first day, by the time I left, I had a huge respect for them all, despite them trying to get rid of me. I realised that it wasn’t the ‘fault’ of any one of them individually, and it wasn’t even the system itself, that made them so rubbish, it was simply a matter of a huge misunderstanding. 

    I was able to connect, immediately, with all my clients. I was also able to know exactly what to do to help them and because I live in my own little world (I didn’t know I was autistic then and didn’t know I did this!!!!) ~ I was able to bypass all of the laid out ‘procedures’ and do what I needed to do to get the job done. 

    The work was hugely rewarding and I learned something about myself from all of my clients. I can’t thank them enough. But it was also, not also exhausting, but impossible to work in that system in the way that I work, long term. It’s just not possible.

    But I no longer see the negative aspects of the system and it’s workers although I can’t tolerate it (I got kicked out of an art place today and my autism worker has now moved our appointments out of the job centre because I nearly got kicked out of there again today as well!). But having worked in the system, I know how it works and it absolutely is working for the good of people, despite how it appears and despite their huge lack of understanding of mental health and autism etc. They really (most of them) have no idea and how could they, they’re learning from books. Autistic people are only just finding their voices. It’s called the ‘hidden’ disability because it can’t be seen. But people, in their desire to help, have come to their own conclusions on what autism and mental health problems are, based on what they see and hear, which is not getting to the root cause. 

    However, their knowledge can be helpful, if it’s a partnership between us and them but in the long term, to benefit all people with autism and so called mental health problems, it’s going to take a while. It’s going to take a huge shift in perception, to dissolve completely, the idea that autistic people etc are somehow deficient, because we’re not, but not everybody knows that yet and that’s the problem. But we’re finding our voice and our stride and there is some great help out there so we’re doing pretty well. In America, it’s pretty standard to give drugs for autism as a standard procedure and we don’t want that. 

    Keep talking and you’re right about how you’ve waited this long to be getting somewhere with the answers. After I fully accepted my autism (it was a process, I didn’t even know what that meant!), the previous 51 years just melted away and I have a new play to write now and truly, I now see all the missed opportunities where I could have got a diagnosis, as a true blessing in disguise. It was a roller coaster of a journey to come to this level of acceptance but getting there, made everything ok. It made everything I went through, not only worth it, but it took away any power the difficult stuff held over me. 

Reply
  • Oh Giddy, please find a way to distract yourself in a way which is self nourishing and self caring while you’re doing this wait because this wait is nothing compared to the wait between having the assessment and getting the diagnosis. Looking back now, I can see that, there was a point when my autism was at its very greatest during that wait, I thought I was going to die. It felt like I was locked into a self made prison that I couldn’t get out of. I couldn’t reach out for help even though I wanted to. 

    But I got through it and it may not be that hard for you because you’ve accessed this site at a good time but maybe it  just won’t be so hard for you anyway, we are all different. I only found this site after I had got my diagnosis and after I was suicidal one Sunday afternoon. So the support you receive from this site will a great help to you. It’s been a life saver, a friend maker, a family giving, advice giving, support giving,information giving, font of learning and so much more, to me. 

    I worked as a social worker with adults with mental health problems and as a mental health practitioner (a community psychiatric nurse (CPN) who doesn’t give injections) for 15 years. When I worked as a mental health practitioner, I loved the work and the psychiatrists I worked with and my bosses, all loved my work, as I got results, although they didn’t want me to tell them what I was doing because it was clearly (although for a long time, not clear to me) nothing they were doing so I obviously wasn’t following nhs rules etc. 

    When I started work as a mental health practitioner as a CPN, I insulted all the nurses and psychiatrists on my first day on the job. Most of the staff, behind my back, hated me and tried to get rid of me. But the psychiatrists and my bosses loved me and didn’t want to let me go. I was literally advising the psychiatrists and my bosses and sometimes telling them what to do but I was getting results they weren’t. 

    However, despite insulting them all on my first day, by the time I left, I had a huge respect for them all, despite them trying to get rid of me. I realised that it wasn’t the ‘fault’ of any one of them individually, and it wasn’t even the system itself, that made them so rubbish, it was simply a matter of a huge misunderstanding. 

    I was able to connect, immediately, with all my clients. I was also able to know exactly what to do to help them and because I live in my own little world (I didn’t know I was autistic then and didn’t know I did this!!!!) ~ I was able to bypass all of the laid out ‘procedures’ and do what I needed to do to get the job done. 

    The work was hugely rewarding and I learned something about myself from all of my clients. I can’t thank them enough. But it was also, not also exhausting, but impossible to work in that system in the way that I work, long term. It’s just not possible.

    But I no longer see the negative aspects of the system and it’s workers although I can’t tolerate it (I got kicked out of an art place today and my autism worker has now moved our appointments out of the job centre because I nearly got kicked out of there again today as well!). But having worked in the system, I know how it works and it absolutely is working for the good of people, despite how it appears and despite their huge lack of understanding of mental health and autism etc. They really (most of them) have no idea and how could they, they’re learning from books. Autistic people are only just finding their voices. It’s called the ‘hidden’ disability because it can’t be seen. But people, in their desire to help, have come to their own conclusions on what autism and mental health problems are, based on what they see and hear, which is not getting to the root cause. 

    However, their knowledge can be helpful, if it’s a partnership between us and them but in the long term, to benefit all people with autism and so called mental health problems, it’s going to take a while. It’s going to take a huge shift in perception, to dissolve completely, the idea that autistic people etc are somehow deficient, because we’re not, but not everybody knows that yet and that’s the problem. But we’re finding our voice and our stride and there is some great help out there so we’re doing pretty well. In America, it’s pretty standard to give drugs for autism as a standard procedure and we don’t want that. 

    Keep talking and you’re right about how you’ve waited this long to be getting somewhere with the answers. After I fully accepted my autism (it was a process, I didn’t even know what that meant!), the previous 51 years just melted away and I have a new play to write now and truly, I now see all the missed opportunities where I could have got a diagnosis, as a true blessing in disguise. It was a roller coaster of a journey to come to this level of acceptance but getting there, made everything ok. It made everything I went through, not only worth it, but it took away any power the difficult stuff held over me. 

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