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Awaiting assessment for formal diagnosis

schnozzles

Hi everyone :)

I'm a 42 year old female senior computer programmer who is currently only informally diagnosed by my therapist  - I've been referred by my GP but I gather it's a loooooooong wait for assessment if you're an adult. In the meantime my work are being great and so are my family and friends, and as I have therapy anyway we're already working on some of the issues I have.

I won't list all the Aspergers pointers that I have, but I scored over 40 on the AQ Test. I have fewer problems now than I did, say, 10 years ago, thanks to being high functioning and self aware. I've always referred to myself as a chameleon as I've always tried to blend in but until recently I never quite managed it. In fact even now I feel slightly apart. If you read the checklist at the back of Rudy Simone's "Aspergirls" book, it pretty much describes me. 

I'm seeking diagnosis partly because I'll always doubt it otherwise, even though my therapist is quite experienced. But it would mean having protecting in the workplace - I'm fairly sure my Aspergers got me fired a while back. And it means I can ask for help with some of the things I find really hard. It also means I might be able to go back to University as I could get help studying - vague questions and lack of structure were the bane of my University life....

  • hi

    I'm 17 and was diagnosed with Aspergers when I was 13. Yes, the waiting list was long which is why my diagnosis was done privately, but I only got the support I needed until I was 15 or 16. I think getting a diagnosis was very helpful, but I doubt you will get support straight away at uni. It may take a good few years. Having said that, as I want to go there myself next year and I do know that their support is a lot better than at high school Smile

  • Scared woman said:
    People kept asking me "Why do you want an assessment" which I just found strange them asking, but now I do know its a big relief as I have been bullied so much called a nutter told I need locking up told I need help, now I know why I have meltdowns its a big relief as I am NOT NOT NOT NOT NOT NOT NOT DEFINATLY NOT a nutter, I have Asperger Syndrome and that is nothing to do with neing a nutter!

    I know what you mean, I have had people ask me that too - even someone on the helpline at an autism charity (might even have been the NAS).  It's ludicrous to ask someone that.

  • Scared woman said:
    I was diagnosed by an Autism specialist in 2007, after several hours of him round my house, but it was part of an assessment done by the family court on my son and I didnt have time to read all the huge boxes of paperwork so didn't realise I'd been diagnosed as well. I had to concentrate on my son so didnt really bother reading what it said about me until I was about to burn the paperwork this year and read what I was about to burn. I had suspected I have Asperger Syndrome by about 2009 and kept asking my GP for a referral, which I have now been told theres no funding for, but all the time I had already been diagnosed, and no-one bothered to tell me, its very upsetting.

    Surely the clinician would have written to your GP informing him?  If it's a private one they don't do that as a matter of routine though, you would be responsible for that yourself.  I cannot believe they didn't tell you though, that's most unprofessional.  If you want it on your medical records you need to copy the report to your GP yourself.

    Regarding an NHS diagnosis they are legally not allowed to refuse assessment because of lack of funding.  If that is what your GP has told you he needs to be educated on the facts.  I would ask the NHS in writing to state that they recognise your diagnosis as valid and if they don't (which PALS and NHS rules say they must) you can insist on them doing their own assessment if they want further verification.

  • Thanks for your comments :) Yeah I've been asked why I want an official diagnosis, as it's just a label and people think I cope perfectly fine. They don't understand the little everyday things I - we - have to cope with. I have trouble understanding facial expressions so am constantly on edge about whether people are happy, calm, sad, whether I've upset them.... I have minor meltdowns when I don't understand instructions. I get angry and frustrated (and default to crying) because I feel like I should be able to do stuff that I can't. I can't organise or tidy without someone laying down the "rules" for me. If by some miracle I've managed to create my own system for organising stuff, and someone moves things, I can't cope.

    The problem I have with all of this is that I'm an otherwise extremely intelligent woman who has developed a myriad of coping mechanisms. Yesterday my therapist showed me a sheet of facial expressions and I felt so vulnerable and scared. It's a process I need to go through but it's playing havoc with the rest of my life as I question everything and see everything in a new light.

  • People kept asking me "Why do you want an assessment" which I just found strange them asking, but now I do know its a big relief as I have been bullied so much called a nutter told I need locking up told I need help, now I know why I have meltdowns its a big relief as I am NOT NOT NOT NOT NOT NOT NOT DEFINATLY NOT a nutter, I have Asperger Syndrome and that is nothing to do with neing a nutter!

  • I was diagnosed by an Autism specialist in 2007, after several hours of him round my house, but it was part of an assessment done by the family court on my son and I didnt have time to read all the huge boxes of paperwork so didn't realise I'd been diagnosed as well. I had to concentrate on my son so didnt really bother reading what it said about me until I was about to burn the paperwork this year and read what I was about to burn. I had suspected I have Asperger Syndrome by about 2009 and kept asking my GP for a referral, which I have now been told theres no funding for, but all the time I had already been diagnosed, and no-one bothered to tell me, its very upsetting.

  • hello. I first started looking for assessment in December, and was diagnosed in October, so it may not be too long depending on where you live. I couldn't manage university either. Hope you get the assessment you need soon.