How can I prepare for the assessment?

So after a two year wait, I finally have my initial assessment appointment in a few weeks. (I'm a 35 year old female) Not quite sure why it's called "initial" as I've already had several phone assessments where we discussed the AQ and EQ questionnaires... But that's beside the point.

What happens at this face to face appointment? Will it just be one appointment, or will there likely be several? What kind of things do they ask? I get really nervous and draw a blank when I get asked things I wasn't expecting, is there any way I can sort of prepare for this assessment? Maybe just make a list of certain things, or think about some answers to certain questions, but I don't know what they'll be asking.

Any advice from those of you who have already gone through the process? :)

  • I was often looking around the room and only really looked at him while i was listening. All the best for your assessment!

  • I've got my assessment on Friday and it's by video call, I'm exactly the same hate video calls never use them, never know where to look. 

  • I am not the best person to answer this one, but I know others have had this problem and have explained to the assessors and had it navigated. I think a suggestion I've seen before is school reports where you can get them maybe or if you have them old videos or other such evidence of you as a child

  • What if you don't have anyone who knew you as a child? My ex is the most long-standing connection I have and we met when I was about 20.

  • Yes, I know the feeling, "I don't think I'm autistic enough". Then something happens, and suddenly you know full well that you are definitely not neurotypical.

  • I was also impressed with the psychiatrist who assessed me. It was the first time I felt really taken seriously and understood throughout this entire process.

    Ironically now that I have my diagnosis I feel less certain that I have autism haha I've heard it can happen, imposter syndrome type thing. I'm also currently off work looking after my toddler but I'm sure as soon as I get back into work life all my triggers will kick back in.

  • I'm not sure there's much my GP can do, I think I need to research more about how to help myself and various strategies and coping mechanisms other people with autism use. Do you think my GP could be helpful?

  • I was diagnosed by Psychiatry UK, though I paid for it, I was quite impressed with how they worked and the psychiatrist who assessed me. I hope you enjoy your new certainty, I know I did and still do.

  • Congratulations. I'm so glad this has finally finished for you and I'm sorry they messed you about so much. I've heard good things about Loop ear plugs and I hope they help you. Are you expecting to have a discussion with your GP about the diagnosis?

  • Hello, and apologies for the really late reply. A few days after the messed up appointment following a two year wait, they referred me to Psychiatry UK because the waiting times were outrageous and the NHS is clearly trying to catch up by outsourcing ASD assessments. Only a few weeks after that, I had a video call appointment at the end of which I was given my autism diagnosis right away. About a week later I had a copy of the letter they sent to my GP with the official diagnosis. Now to research how to help myself cope with anxiety and social situations Slight smile I have already purchased a pair of Loop ear plugs hoping that they will hope in noisy and busy situations such as a social outing or lunch at work etc.

  • At least try contacting them. They have messed up here. Either something was improperly documented or a failure of communication has occurred. Being in limbo like this is bad enough, let alone having to deal with the false ending here. PALs should know, if only so that this can be flagged if it also happens to someone else using this service. And they also should have been able to tell you if you would be on the waiting list as from your first triage, or this second one. 

    On top of this, Aspergers is no longer a term used for diagnosis by the NHS, so that was also a bit weird, although I understand some professionals are taking a little longer to adjust.

    If not for yourself (and it may also help prevent them from messing you up like this again) then consider contacting PALs for the other people who may end up facing this situation, which should never have happened in the first place.

  • You think so? I’m still on the waiting list but i have no idea for how much longer. It does feel like i keep starting all over again though.

  • I am horrified that you have had to deal with this. Have you considered contacting Pals? I think this would definitely warrant it. 

  • So they messed up. I had an initial appointment on the phone two years ago after which they put me on the waiting list for a diagnosis. Today was the initial assessment again, not with an ASD specialist at all. All they were going to do was put me on the waiting list. I burst into tears when I realised this wasn’t going anywhere.

    They said based on my AQ score I probably have Aspergers, and to start looking into support options and advice as even with a diagnosis there wouldn’t be any support or guidance through the NHS. They then called me a few hours later to confirm I was indeed already on the waiting list since two years ago but couldn’t tell me how much longer I would have to wait.

    I’m considering going private, I can’t cope with the wait and the unknown, would you recommend going private?

  • It does make sense, and I can appreciate its very difficult. I did my best to be myself, and behave like I would if I was at home. It’s hard to know where  the masking ends/starts, as I’m on a leaning curve like yourself.

    If I went to the assessment masking, I would be standing and sitting prim and proper, and acting very confident. I would give a lot of eye contact, smile a lot, and nod and make the right noises. It would have put my hand out to shake etc. 

    None of that is normal for me. Its unnatural and uncomfortable, especially the hand shaking. 

  • Ah thank you, that's helpful to know. You'd think that they would tell you in advance what the whole process is likely to be like...

  • I think I'll bring some things written down, just in case. Before I started this whole process I'd made a list of things that I felt or did that I thought could potentially be linked to autism, to give to my CBT therapist (CBT wasn't working which is why she agreed to do a referral for me). The list was 4.5 pages long, which I thought might in itself be a sign Sweat smile

  • well sure, but that's an answer to a different question. i am replying to the question and point piki86 noted.

  • Again, this approach will not suit everyone. If you are prone to sporadic selective mutism, like me, having things written down will help.