• Replies 9 replies
  • Subscribers 83 subscribers
  • Views 3282 views
  • Users 0 members are here
Options
Related
Hints and tips
  • To quote someone's message, first select/highlight the relevant text, and then use the Quote button that appears
  • To "mention" someone, type @ followed by the start of the forum name, and choose from the list; that person will get a notification of being mentioned

The diagnosis process

Ian Hirst

For the past year or so, I have been on an interesting journey. To start with, I was unsure why I was so different to everyone else I knew, wasn't sure whhy I struggle with making and maintaining friendships, progressing at work and wondering why I think different to everyone else I know (mainly the way I process things). Considering I work in the education sector, I started noticing students who had a diagnosis, displaying traits that I am too familiar with myself. I went on a couple of training sessions and had some professionals ask me  outright whether i was on the spectrum or not... My response was "probably". I sought out some assistance from my GP who referred me to the Suffolk welbeing team, who rang me to discuss why I thought I might be on the autistic spectrum. After being referred for an initial meeting (which took a couple of hours truth be told), I received a letter stating, once at the top of the list, I will be asked to have a sesion with a clinical psychologist. That letter arrived throgh my door two days ago, for an appointment in a couple of weeks time. I am absolutely bricking it, and my anxiety is through the roof. Can anyone tell me what to expect, so I can process what might happen during this session that is going to last all day. Please?

Parents

  • I have assessment appt 3 coming up soon but no idea (haven’t been told what the plan is). Appt 1.., general info and why I asked to be referred. Appt 2... developmental history, childhood, friendships and relationships etc

    they have my RADS score, EQ test, AQ test..I filled in all the paperwork, gave them school reports...

    not sure if they will do an ADOS cat 4 test or just let me know findings? Eek

  • in reply to .

    I wish it was a standard process or at least that staff would explain beforehand what is going to happen, how long it will take, how the results will be conveyed and what sources of post-diagnostic support are available.  I honestly thought there'd be national and professional guidelines on this so I'm quite dismayed at it all.

    That said, both my own and my son's assessments followed the same process, although min took considerably longer (mine was NHS and because of the extremely long wait we paid for our son to have it done privately).  The process was questionnaires first, a 1 1/2 hour screening interview which dealt with reasons for seeking an assessment and general background, a questionnaire-driven 2 1/2 hour appointment to take a full case history, taking in info from a parent or someone who knew the person in childhood (particularly aroudn the age of 5 for some reason), then finally the ADOS-4 test  (which in my son's case was filmed).  This all then went to a multi-disciplinary meeting for the final decision to be made, followed by a diagnostic appointment (in my case I got an A4 diagnostic letter, my son got a detailed report including a list of possible avenues for follow-up or post diagnostic support).  

    So from our experience it sounds as though you'll still have the ADOS-4 to do.  i would advise calling them to ask about the process just to put your mind at rest.  However, i have to say that our phone calls were rarely returned and, when they were, it was weeks if not months later!  To me the process seems particularly gruelling for those on the spectrum so i put in a complaint to the CCG and also responded to their invitation for comments to feed into a review of the service.  Obviously i've not heard anything back from that either!

    If only it could be more straightforward and easily accessed! 

       

Reply
  • in reply to .

    I wish it was a standard process or at least that staff would explain beforehand what is going to happen, how long it will take, how the results will be conveyed and what sources of post-diagnostic support are available.  I honestly thought there'd be national and professional guidelines on this so I'm quite dismayed at it all.

    That said, both my own and my son's assessments followed the same process, although min took considerably longer (mine was NHS and because of the extremely long wait we paid for our son to have it done privately).  The process was questionnaires first, a 1 1/2 hour screening interview which dealt with reasons for seeking an assessment and general background, a questionnaire-driven 2 1/2 hour appointment to take a full case history, taking in info from a parent or someone who knew the person in childhood (particularly aroudn the age of 5 for some reason), then finally the ADOS-4 test  (which in my son's case was filmed).  This all then went to a multi-disciplinary meeting for the final decision to be made, followed by a diagnostic appointment (in my case I got an A4 diagnostic letter, my son got a detailed report including a list of possible avenues for follow-up or post diagnostic support).  

    So from our experience it sounds as though you'll still have the ADOS-4 to do.  i would advise calling them to ask about the process just to put your mind at rest.  However, i have to say that our phone calls were rarely returned and, when they were, it was weeks if not months later!  To me the process seems particularly gruelling for those on the spectrum so i put in a complaint to the CCG and also responded to their invitation for comments to feed into a review of the service.  Obviously i've not heard anything back from that either!

    If only it could be more straightforward and easily accessed! 

       

Children
No Data