Video assessment quandary ... plus 'I am not a number, I am (possibly) an autistic woman'

Hello NAS community ... After a while 'lurking' here since my initial query post over a year ago, I've finally just changed my username from the numerical auto-generated one NAS had branded me, so apologies this has taken me a while to muster. (Please also excuse my attempt at humour with my tenuous Prisoner reference!)

I want to say I've really appreciated you all. I've gained so much insight and increasingly identified with so much from avidly reading posts on here but hadn't yet had the courage or sense of validation to feel able to actively participate, due to the fact that I am still in the limbo of awaiting assessment as yet another female seeking a late diagnosis. Hence my provisional username, hopefully conveying my current pending state of being 'autist-ish'. (Though also in reference to my childhood nickname, Tish.)

Although I am very pleased to finally flesh out my identity here and join you all, I have to admit I do find expressing myself in writing, whilst being a preference for me, seems to take up a lot of my energy - swallowing time with a kind of compulsive hyperfocus, rewriting, writing excessively, overthinking etc. So all in all, I just don't know how consistently I will be able to actively contribute to the conversations without overwhelming myself, though I really do want to! It may be intermittent or in fits and bursts, or perhaps I will be able to restrain myself to at least pipe up to the conversations in a more regular, albeit minimal way. I suppose really, a virtual form of selective mutism, perhaps? Things may pan out very differently of course, should I receive a negative diagnosis. Nevertheless I just want to be open and give you all that disclaimer anyway ...

My assessment limbo of almost one and a half years has had some startling developments this week. I had plucked up the courage to at last email my assessment service to enquire, a) an estimate of what my position is on the waiting list; b) whether there is a possibility of taking any cancellations; c) confirm that I had not become lost in the system. I was anxious to ask them in case I was told "another 2 years or so plus", but to my shock, the reply I received was actually an upcoming appointment date for 25th April. However, my reaction has been mixed. I'm obviously feeling very fortunate and taken aback with relief it is now imminent, however my anxiety spiked upon reading it as I was not expecting it to be a 'virtual video call'. I personally struggle with video calls as the sense of disconnect etc. seems to affect my communication. I emailed them back today to explain this and ask if there is any possibility of a face to face appointment option, but that I understand if not or if this would mean much longer waiting times. They replied to say that, "[...]face to face appointments are available but are very limited[...]" and that I could cancel my virtual appointment to wait for one to come up if I preferred. So, I'm now left with a quandary. I have no indication how this limited availability translates - would this be months, a year even? Should I just accept this very fortunate appointment I've been given, despite my reservations with the anxiety and discomfort of video calling? Would this help or hinder me, I wonder, in terms of masking (which, as a late diagnosis seeker, is very well cultivated!)

I hope you can offer some insight or advice on what to do, or maybe what you would do in this situation. 

Once again, pleased to finally join you and thank you for listening.

  • For what it's worth, both of my video assessments only lasted just over an hour as I think there was quite a lot on paper.

    Whilst the prisoner isn't one of my specialist interests, I did really enjoy watching it about 20 years ago and keep meaning to watch it again as I can't remember how it ends believe it or not! I absolutely love Portmeirion and was there for the second time last year but only been on day trips. Both times I've been fascinated/obsessed with the blue colour there...the really vivid one! I tried searching for it online as I need more of that blue in my life so  just wondering if anyone knows what it's called or even knows those colour numbers (hex, RGB etc)for it?

  • I would like to visit Portmeirion! I actually mentioned it to my fiancee a while back and we're thinking of going one day. She hasn't seen The Prisoner, but I mentioned it on my blog, which she reads, a while back and she was intrigued, so I'm hoping to show the series to her at some point.  When I mentioned the location was a holiday spot she googled it and thought it looked worth a visit even without the Prisoner connection. I guess we both love eccentric and old-fashioned places and things!

  • Greetings Luftmentsch, thank you. Knowing others here over-think / over-write is a relief and I have gathered that this seems to be yet another manifestation of the autistic state of being!

    Like yourself, I think if I do go ahead with the video call, I will certainly let them know all my anxieties about the process as we start, as well as revealing my general fears of being able to express myself effectively under the live pressure of 'performance'. That should help me and hopefully also be informative for them.

    I am now leaning more and more towards the prospect of a video call. It is possibly that my overall anxieties regarding the now very real imminence of my assessment are feeding into my fears too - whether conducted online or in person ...

    Be seeing you Luftmentsch!

    P.S. I don't know if you are aware or have been, but I would recommend a stay in Pormeirion if you ever get the chance! We stayed in one of the unique buildings, the Bridge House. Having the gardens to yourself is quite the magical experience after all the day trippers have gone. Failing that, a day visit is worth it. We ended up buying our very own 'Rover' (in actuality a weather balloon) from the shop!

  • I wrote extensively, but not on the scale of your response. Relaxed I tried to give examples of my traits and experiences to fit each of the categories in the diagnostic manuals.

  • Hi! I probably also over-think/over-write comments. I also don’t have the time to follow and contribute to all the posts here. I just try to find a balance that works for me, although periodically I have to re-tune it as life circumstances change.

    I don’t have a clear answer to your question. I also struggle with video calls, but I had to have my assessment over video because it was during COVID. I can’t remember if I “warned” them that I might struggle with this. Personally, I would be tempted to take the call because that waiting list is awful, but I can see that it might add to your anxieties, especially if you’re afraid you will mask your autistic traits at the best of times. That said, your worries about seeming stilted and lacking spontaneity would probably make you seem more (stereotypically) autistic than less! But I agree with Martin that a good assessor will base their assessment on a lot more than just how you communicate in the assessment.

    I think the fact that the video call will be in your own home can help too. I would have had a very long journey to South London and back to be assessed had COVID not intervened.

    Also, good to find another Prisoner fan! Be seeing you!

  • Thanks. I don't see it as a goal, don't worry! Haha. And I'm thinking all the stuff anyway so it isn't any more exhausting to write it, but probably helps, but I shall still probably forget things...

  • Oh dear I seem to have set a benchmark! Exhausting yourself now is probably better though as you say.

    Good luck Triker!

  • I love this as I am in the process of writing down some notes to prepare for my assessment and she said i could send them to her and it might make the time it takes for the video chat a bit shorter so is worth doing as I know I will be exhausted by the end of 3-4 hours. But it keeps growing! I was wondering how much was too much and I am nowhere close to 144 pages, so I'll keep going!

  • That's certainly a good thing that you have the option for the online format then. I know I'm viewing it from another side completely, but hearing your reasons, I'm sure there are many others who would prefer to. It would be ideal if everyone was given the choice.

  • Thank you Martin, again, this is of great reassurance to me.

    With regards to their attention on written history, I keep trying to stave off the anxiety in this way by reminding myself that I ended up writing rather extensively for my questionnaire - 144 pages (sides equivalent) to their 70 questions! I am indeed quite mortified about this, as I am more than aware it's pretty extreme. I just felt compelled to comprehensively give them as much 'evidence' that I could regurgitate as possible, knowing that recalling, including and expressing everything verbally would likely be problematic for me. It was like writing my memoirs whilst simultaneously psychoanalysing myself! So, yes, I am hoping this will have advocated for me somewhat. Unless of course, it was too overwhelming for them to digest!

  • Thank you Catlover. There is reassurance to be found with what you say here. I think anxiety would be there whichever format after all. Plus as you say, going back on the waiting list would only mean surrendering to the fearful 'Unknown' - not an ideal situation to put oneself through given a choice, as I'm sure most here would agree!

  • Greetings, indeed you are a Number! THE Number. Inimitably so. I must admit your existence did come to mind but only just after I posted. This did tickle me.

    Thank you very much for your welcome.

  • If your assessor is competent, they should be putting much more weight on your written history of traits and problems than to merely observing you. As an adult you know much more about yourself than any one, however well qualified, can ascertain in a few hours talking to you. I would not put too much pressure on yourself to 'perform'. I had an online assessment and, though I was nervous to begin with, it was fine.

  • I have several reasons to prefer video call.

    Firstly I am still not doing in person due to wanting to avoid long covid, as my physical disability was probably triggered by flu so covid may re-trigger that, or something else, and I don't have enough energy as it is.

    Second also my physical disability, in person would mean having to travel, find somewhere to park, find where I need to be which might be a longer walk, or up stairs and I hate lifts, then be in an unfamiliar environment which may not be physically comfortable, for several hours during which I will become exhausted and then have to get home after - so many reasons why that would be just really off-putting to me.

    Third, I am quite comfortable on video calls as I do language learning lessons on video, and video chat with my Dad and with friends so by now I am possibly more used to that than face to face!

    Fourth, as Catlover said, I will be in the comfort and familiarity of my own home. I use a laptop so I can do video calls from my bed! As the assessment is 3-4 hours, I know I will be exhausted before it ends so not having to sit up on a hard chair will conserve energy a little longer. And I can't forget to take anything with me! Or even if something came up in the course of the assessment, I might be able to find a thing to show them. I have access to food and drink which suits me that I don't have to plan ahead to take with me. I don't even have to get dressed if I'm having a bad day!

    Fifth it means I have access to an assessor anywhere in the country.

    All positives and zero negatives that I can see! But I know not everyone is the same.

  • I think if I were in your shoes I would have the video assessment. I detest being on video chat with anyone, so I would struggle, but I would the advantage of it being in my own home, and I could choose the area I felt comfy to sit. Since I would be anxious, I might display more traits if you will. I might rock slightly without realising it, or jump in the air of my phone rang or someone knocked at the door.

    I wouldn’t worry too much about subtle things they might miss on a video chat. It’s mostly questioning etc. There is no ‘look’ for autism, so they won’t be judging your appearance. It’s often what you say, and what you don’t say that matters. And of course enough info that stems from your childhood.

    Going back on the waiting list for an in person appointment will only increase your anxiety as you will be left in limbo for goodness knows how long, and you’ve done enough waiting already.

  • Hello, I am Number.  Oh, the irony.  I'm not sure if the jokes on you, or on me.

    I took a good wee while to ditch my number to become Number.  It has made everything much easier for everyone I think.

    Welcome to the world of Avatars.  I look forward to your anticipated "fits and bursts" when you so choose.

    Number

  • Hi Triker, thank you so much for taking the time to respond. You've given me some new perspectives to consider so that's really helpful.

    I think my struggles with video calls are based with the altered dynamic where I think there is probably even more of a reduction in the ability to gauge those subtle micro cues when you are interacting with someone. Akin to phone calls in a way I suppose. Possibly to do with the disconnect and the restricted gestures? However that is based only on my experience with video calls with friends/family which are informal and sociable in nature, where the 'spontaneity' and flow seems to be affected and I feel 'stilted', even more unsure of when to interject, not talk over someone etc. A more structured, formal dynamic such as an assessment may not present these difficulties in the same way perhaps ...

    May I ask what makes you prefer to have yours by video call please?

    I wish you all the best with your upcoming assessment and thanks once again.

  • Hi, I can relate as I am also a female seeking late diagnosis, my appointment is in 2.5 weeks, but I am quite happy to have it online, that's what I wanted.

    I would tend to think they ought to be able to still identify you as autistic over a video call, especially if you warn them you are not comfortable with it. And trying for a face to face could well lead to a much longer wait. But if you think the video call makes you mask more then it would be a worry. I guess for this the real question is would the video call make you seem more or less autistic than the face to face! I'd be surprised if it made you seem autistic if you weren't though, if that makes sense?

    If it's more that you are worried about surviving the anxiety of it, at least you are in your own home, and they ought to be OK if you had to ask for a break to recover. Make sure you don't have too much other stress the couple of days before and after if possible, and have something you find soothing close at hand.

    But as I haven't yet had my assessment I am in no place to advise really, just wanted to try to help, hopefully someone more useful might weigh in.