I'm Officially Waiting...

Yesterday I finally received information on my referral for assessment. After months of chasing my GP and being turned away for being 'depressed'. I was feeling particularly fed up yesterday and uncharacteristically phoned my doctors to be told there's a waiting list - this is to be expected but it's the first piece of information they have actually given me. She couldn't answer any of my questions or even confirm if I was officially on the waiting list -all I was told is that there is a waiting list. I was given the number of the centre to call for more information.

Great, another phone call.

I left it a couple of hours before phoning and they confirmed I am on the waiting list for the first stage of assessment and to expect to wait 6-9 months. Not that bad compared with some of the waiting times people on this forum have discussed. She also confirmed that the referral was received 8th May! So I've already waited a month without realising... Jokes aside though, communication has been awful and it goes without saying STRESSFUL.

I feel somewhat relieved but I'm still anxious. I've been writing about myself in the hope I can remember everything that may be useful at the assessment. So far it's 13 pages and counting. 

What are your experiences with being on the waiting list? How did you cope with the wanting to know right now but having to wait for an unknown date? Did the stress and worry build and build until your appointment or was it relieving when the date come through? How did you prepare?

  • I was told the waiting list was 2 years, but I got my assessment almost exactly a year later, I wasn't really bothered leading up to the assessment as I've known pretty much all my adult life I'm autistic.

    It's actually what's happened since the diagnosis that has caused me more anxiety than anything else, I have been waiting almost 8 months for the assessment report as without it, I am unable to get help. My GP hasn't even been informed of my diagnosis. Despite ringing many times all I get told is they will pass it on. I live in Essex.Bee

  • Wow.. I knew there were long lists for assessments but not for your report to be released?? I usually go into my GP to chase things as I hate using the phone and you can be easily fobbed off. If you're there in person you can see them take action. So I'm assuming, from the way you've written, that you're still waiting for your report? That's awful..

  • Yes I am, I've been to my GP and he has had someone from the surgery chase up the report,  that was over a month ago, still nothing.

  • I had a 10 month wait. It did feel rather torturous to be honest, I don't know how people wait a couple of years. I kept wildly swinging back and forth between feeling really sure and doubting myself, and wondering if I was going to be left feeling stupid and embarrassed if I didn't get a diagnosis.

    Initially I was stressing over it all the time, and then I just realised I was going to have to try not to think too much about it-since it wasn't like there was anything I could do, and tried to put it to the back of my mind. Then I started worrying about it again around the time I was kind of expecting to get an appointment and I didn't. Very relieved when finally got a date; I'd phoned up and they'd given me an approximate time I should be seen and it was close to passing so that was really stressing me out, that it was going to be even longer, but the letter came only about a week before my first appointment.

    I too kept a long list of things-you can take it with you and give it to them in written form, you don't have to just remember it! The guy assessing me said he might not have time to read it all but then at the following appointment I could see he'd highlighted bits and he said it was very helpful that I'd put everything under subheadings (...could probably tell I was autistic just from that) because it made it easy for him to skim over. Don't worry too much about it, and they should gather lots of different info anyway (for my assessment they had a questionnaire my mum had filled in, one I'd filled in, plus info I'd given my GP for my referral, plus of course what we talked about/what got assessed for in the appointments themselves).

  • wondering if I was going to be left feeling stupid and embarrassed if I didn't get a diagnosis.

    This is my fear. I'm scared that after having my whole life put into perspective that it can suddenly be shattered and I'll be left wondering who I am again.

    I've used subheadings in my list too, it's as organised as it can be but I do tend to record things as and when I think about them so there is some disjointedness about it. I've recorded my score ranges for the various tests too. My concern is that I can cope with day to day life but it's the toll it takes on me. It's an accumulation of all the little things that add up and take me by surprise and suddenly I'm throw into depression and exhaustion. I'm hoping that comes across. For example I have a routine, and it can be broken, and I'll cope (I have kids, it usually gets broken!). It means I'll be put off for the day - I'll probably forget something important like my wallet and I'll notice it's absence all day. That day I am anxious and stressed but I cope. Later on I'll be withdrawn and quiet at home, which isn't nice for my family. I do have meltdowns but as I said it's not one trigger, it's usually the last trigger of the various things I can cope with individually. 

    I'm an expert at pretending I'm OK and I blend in very well. This is why I'm writing such a detailed list because the person on that list will be different to the person that turns up to the assessment - I just hope that they can see through me.

  • I wouldn't worry, I'm exactly the same, over the years I've learnt to give eye contact and say the right thing, even though it is all false.

     I personally felt every single question was relevant at the assessment, some actually surprised me as it was all so relevant. Your be fine.

  • Thank you. Part of the reason I want an official diagnosis is so that I can drop the act. If I could live in a world that is ok for me to not talk when I'm feeling tired that would be great!

  • Based on my experience , if you have a prior mental health diagnosis ,  in Essex it's extremely difficult to get anyone professional to consider you might be on the spectrum .

    40 years in Essex (with 4years in between that in N Wales) and not a sniff of a referral. Come to Wiltshire and within 7 months of seeing a pdoc  I've got an Asperger's dx.