Lost and asking for help

  • Where to start...

I have always struggled with daily life and have come to realise that maybe something is not quite right with me. I have been looking on the internet and it appears that I have a lot of autistic characteristics.   I have done an online test and scored 41 out of 50.

My GP surgery have agreed to refer me on so I can be assessed for autism.  I don't know if I'm autistic but its a case of needing to start somewhere on this journey.  I have also thought that it might be depression, OCD or a combination of things.

Probably not giving you a lot to go on but just wanted to get the post up and running.  Any questions please ask.

I'm looking for any thoughts, tips, help,  ideas on where to go next.

I'm 50 and male by the way.

Cheers

Mark

  • What have you got to lose by being diagnosed ?  Personally, and having only just been diagnosed, it creates a sense of relief (or did in my head) because you can then start finding reasons for things, that you are not mad but look at things in a different way.  You can then start to read up and find that you are not alone, whilst you might be in a minority you are certainly not alone and others think the same way, have the same issues and find ways to cope with the confused world around.    I feel great having a diagnosis but it doesn't change me from the person I was before, just perhaps will help other people understand me in the future.  

  • Hi all. Hope you dont mind me joining in but this seems to be the most relevant discussion for my question.

    I am 48. I have an appointment with my gp next week to ask for a referral for diagnosis. My psychotherapist thinks I am HFA. I am beginning to think about not going. What would people say is the benefit of diagnosis. I am aware i am beginning to feel more and more isolated the older I get. I am not sure if I am hfa or not. It would explain a lot but will a diagnosis help? What have others experienced?

  • Hello Mark,  just came across your thread and thought I would put my monies worth in the pot as someone who has just been diagnosed with Aspergers (on Monday in fact).    I went to my local GP last April and it took nearly a year before I heard anything back, mainly because I think so many services have been cut in mental health support that there is just not enough people.  Anyway my assessment consisted of 3 parts.  The first part was with a Speech and Language specialist and a Dr on rotation (since left with all the knowledge she would have learnt.  The first session was mainly why I believed I had issues and then responding to specific questions about behaviour etc.  The second appointment was jus with the doctor and my partner came with me as someone who had known me a long time to ask about my behaviours, how I come across etc.  This investigated my childhood as well because a possible pattern may have been there for many years.  Following that appointment I got a long questionnaire to complete asking various questions on how I would react, think etc.   The final session was with the speech and language therapist again and was looking at my use of language, recall, though process etc.  None of it is scary and none can be prepared for because all you have to do is be honest and open and say why you gave such and answer and your thoughts behind it.  I know that might be difficult but worth it to get answers.  Well in my view anyway.

  • You are welcome Mark, there has been a lot of help from others towards me (I am also new here), so it is nice to be able to help you

  • To prove to myself that I'm not mad as simple as that. The process is different in different places. But in my health authority once you have been accepted for assessment they send you a bunch of forms to fill out and send back to them then you go in for the assessment and have an interview that lasted 4 hours. 4 whole hours, but I got to play with vulgar and rock for most of the time while mostly my husband talked for me.

    Then a few weeks later I got a letter that said yes I'm autistic. Then ummm that's it, no debrief or anything although the letter said there would be one. But I'm not sure I would have gone anyway.

  • Is there a reason why you wanted a diagnosis later in life.

    What was the process like?

    Cheers

  • Hi Mark, welcome. I got my diagnosis earlier this year at age 51. So don't worry about age. 

    Song

  • It all helps, especially to know that people my age and older are looking for or getting a diagnosis

    Thanks for the youtube pointers.

    Will keep checking the forum as you suggest.

    Thank you.

  • Hi Mark

    Welcome to the forum.

    Keep checking back on this forum - it has been invaluable for me up to now as a resource to check and I am now starting to contribute and respond to posts after a few months.

    I strongly suspected I was on the spectrum 10 years ago but only this year decided to go for a referral.  Up to the point of going to my GP I revisited the tests but looked in other areas (such as anxiety, OCD, SPD, etc.) before putting together the information to show the doctor.  This was a combination of other online test but also watching this forum, reading (Tony Attwood & Chris Packham) and watching youtube videos from the following (not an exhaustive list) to get more background on adults on the spectrum....

    • Animish
    • Anna Moomin 
    • The Aspie World
    • Invisible I
    • TED (Alix Generous / Simon Baron-Cohen / Temple Grandin / Carrie Beckwith-Fellows / Elisabeth Wiklander)
    • ADUK (Chris Packham BBC documentary on autism)

    MY GP referred me, we completed the referral application and, just today, I have received the information pack to complete so that an assessment can be scheduled.

    And age is no barrier (or it shouldn't be).  I'm a 59 year old male and there are others that I know with similar late diagnosis.

    Hope this helps

  • Yes I think my coping strategies have stopped working, if they ever actually worked. I am also looking for answers.

    I also appear to get by and that may be part of the problem. I think because I dont go into meltdown people just think I should carry on as I am and stop trying to get a diagnosis.

    I plan to stick around if the community will have me. You and Phil have already been really helpful. Thank you.

  • I had the epiphany last year and joined the forum seeking fellow women on the spectrum. I have taught a great many students on the spectrum and joined the dots.

    One the masking and coping strategies no longer seem to work you are left with a self that seeks answers and I sought them.

    After a great deal of research, doing various online assessments I identify with the condition and was seeking to save up for a private assessment. Waiting times can be long and I wanted to waste no further time and start the next chapter of my journey.

    I have a husband who is poorly and used a lot of our local doctors time (justifiably) I also felt guilty of wasting resource in that I "function" and get by albeit badly at times.

    We now have a new doctor who called me up yesterday. So the request came via a phone call which suited me best. I was also put on the spot (I was not expecting the call so didn't have all of that anxiety leading up to a meeting).  If it was face to face then I think I would have clammed up (don't think the phone call was easy either). When face to face you read the face and body language and I think it would have been more difficult.

    Can I just say though, the community here has been a godsend and if you stick around kid you will see that people are able to talk freely and not be judged. We are all at different points in our journey and we look out for each other. 

  • I want to understand me and maybe get others to understand me, and change things if they can be changed.That would be a good outcome for me.

    Making it easier on the wife and kids would be good. I think my wife struggles to understand me sometimes. 

    The children thing resonates with me but I'm not sure my youngest is ready to accept that he needs testing to rule it out. Also, the wife says not to push it with him. He was tested for dyslexia but they couldnt confirm it as they lost all the paperwork, and he / his mother didn't want to put him through the process again. He is in college at the moment so in theory would get lots of help if it was confirmed.

  • Hi Mark

    My wife had some knowledge, so that helped, but I didn't do any prep as such for the assessments.  I had to send some information in advance and answer many questions whilst there, often expanding on what I had put.  The lady remarked on how 'thorough' I had been (probably long-winded but there you go).  I didn't really know what to expect, so I am not sure there is anything you can really do to prepare, but a lot of the questions are around growing up and how you behave at that stage.  My mum is no longer with us to ask, and my dad doesn't recall a great deal about it - what he does he puts down to me being 'lazy', or saying 'lots of people do that'.  I tried to explain that it is the amount of things I maybe did differently that will add up to the diagnosis, but I don't think this was really understood.

    An example I remember was around eye-contact.  Now I am not very good at making eye contact, but am aware of this so try to do it, however there is a point where I am focussing so hard on doing this I am not hearing what the person is saying.  So I had to get this across, as I was aware she may think that I was quite good at maintaining eye contact. 

    I think I wanted to take it forward to explain why I have done things a certain way, and to identify whether I can make changes to make things easier for my wife and children.  Also, to identify if the children show traits, as if I do, they may do so also.  I am not sure what will change if I get the diagnosis, I work and have no issues there, but I think I just want to try to make sense of it if I can.  I measured 46/50 on the tests so it's looking pretty likely.

  • Thanks for replying.

    Interested to know what made you ask for a referral at 43 and how receptive they were in the surgery

  • Thanks for replying.

    I have discussed it with some close friends and family but only those I trust.

    Apart from the reading, did you do any particular prep for any of your assessments

    What made you want to take it further as its not the easiest process to go through.

    Thank you for your time.

  • Hi Mark

    I'm 43 and my doctor has just referred me.  I did a lot of reading about the subject.  If you can, I do recommend reading Tony Attwood as a good way of understanding the mechanics of the condition and also there are many adults here who can identify with your situation as well as the potentially other comorbid conditions associated with ASC.

    http://www.autismforthvalley.co.uk/files/5314/4595/7798/Attwood-Tony-The-Complete-Guide-to-Aspergers-Syndrome.pdf

    Don't be afraid to ask questions... :) 

  • Hi Mark, I am 45 and we (my wife and I - after some training she did) identified that I have some autistic traits.  I have the third part of the assessment on Friday this week so am hopeful of some answers then.  It took about 8-10 months to finally get here (I had an initial 'mental health' assessment, then a wait (and a fair bit of pushing emails to try and get the appointment), had the first one about 6 weeks ago, and like I said the second this week.  Through discussions with my wife, and we've discussed it with the kids, we say things are 'different' with me, and I look at things differently to others.  I would do some reading on the subject if you haven't already, and discuss it with those you feel comfortable with.

    An example, when I come home from work, I would 'rant' or offload information about my day.  I wouldn't ask my wife how her day was, as I assume people just tell you.  This was something that annoyed her, and one of the traits she picked up on.  Now I try to remember to ask (even though it feels weird saying the words), but that is progress as we are understanding one another and compromising on our expectations of one another.