Keeping thinking of things I should have said during assessment

I had my assessment 2-3 weeks ago and was told I'm autistic. I don't have my report yet and have been told not to expect it until the new year as they have a backlog of them to write up. Apparently I'll also get a follow up appointment around that time.

I find myself frequently thinking about things I should have said during the assessment. For example, the assessor spent a long time asking if I had any collections and I kept saying no, I can't think of anything, so we moved on. It's literally just dawned on me that for the last 10 or so years I've spent upwards of two hours every day playing a card collecting game online, and that I'd be pretty upset if that collection vanished. But because it's digital rather than physical, and it's a thing I know is "boring" and that I shouldn't talk about, it didn't spring to mind.

I guess I'm worried that my report is going to make me look "less autistic" than I really am. By the halfway point of the assessment, the assessor seemed pretty unconvinced by my autistic experiences, as she kept saying "it doesn't seem like routines are a big thing for you" or "it doesn't sound like you do that to an extreme extent." Needing to stick to routines is a big part of why I don't travel (ever), have close relationships, or have a regular job, but I couldn't seem to get that across, as I was simply answering the questions honestly, and really, no it's not a big deal if I have breakfast 10 minutes earlier one day than another, and no, my special interests don't interfere with things I need to do (because I've structured my life in such a way that I can devote several hours a day to them). Once we got onto talking about social stuff she seemed more convinced, but I think I might still have been heading for a "not autistic" diagnosis until she asked how often I used to have meltdowns before I structured my life to give myself more solitude and I said "oh, every day." She seemed surprised, like she'd assumed everything I was describing were occasional problems, not all-consuming.

I know all I can do is wait for the report, but I just wanted to vent.

I was diagnosed by the NHS in a single 4-hour interview with no tasks to complete, just questions about my experiences.

  • I also do the same, thinking about things I should have said, and my psych was quite convinced that I was autistic as my written report was extremely detailed, he kind of saw the interview as a formality.

    I think basically the kinds of questions they ask and the way they think about autism are quite limited and behavouralist; like for example, you know yourself you need structure, but because the questions are behaviour based, eg "Do you get upset when you eat breakfast at a different time", they're obviously not going to pick up on the myriad of different ways structure can be important to you in your life. Again "Do you have collections, for example of figurines?" is very different to a broader question like "Do you enjoy collecting things?" And we are autistic, so of course we are going to answer the specific question at hand, we're gonna answer the question that was asked, not the question they should have asked.

    I think for this reason the assessment is always going to feel a bit weird and disorientating? And afterwards, when you actually have space and time to reflect and process, of course you will think of all the relevant things you could have said.

    And in any case, they know at least that autism is a spectrum, and that we don't have to tick every single box to be understood as autistic.

  • Thank you, I wasn't expecting the activities to confuse me as much as they did - although I suppose that's the point of them! x

  • Thanks. Yes, I'm hoping that when I get my report early next year there will be some kind of follow up too. As the assessment ran over so much I was out of the door within a couple of minutes of being told I'm autistic, so that left my head whirling a bit.

  • Hey! 

    My interview/diagnosis was also done on an NHS video call. When I finished I felt really like...spaced. I'm not really used to talking about myself much and basically trying to describe yourself for hours on end is quite hard! I feel like I answered all of the psychiatrists questions but worried I'd been too literal and should have 'fluffed' up my answers a bit. 

    The report is nothing remarkable, just a summary of what we talked about and his diagnosis at the end. He told me 100% at the end of the call though so there was no ambiguity. 

  • I wouldn't worry. You just described autistic communication perfectly x

  • I’m worried about my report too. I’m normally quite chatty, but I was so overwhelmed in the assessment that I was practically mute. I gave one word and very short answers, it was like my brain forgot every word I’ve ever learnt. Hope it doesn’t affect anything. 

  • I would echo what others have said....don't worry about it.
    As far as I see it, it's happened and you got the positive diagnosis that you were looking for / expecting.
    Unless you are disputing the diagnosis and feel that you are not autistic.

    There was so much more that I wanted to say during my assessment, but time restraints did not permit.
    I could easily have spoken in more detail in the first "interview" part of the assessment.
    There were important events in my life that we could have discussed, but the questions weren't asked.
    I could have talked and talked about the map, the places that I had visited on the map, my experiences, etc.

    Hopefully things should start moving for you now that you have your diagnosis.
    Follow ups, group sessions, etc should be offered to you in the coming weeks.
    They should give you the opportunity to cover things that are still bothering you about the assessment.

  • Hi Nate

    I think people are right here, it probably isn't something to worry about - at least I'm trying not to worry about it as like you I came away from my assessment (one hour 20 video call with Psychiatry-UK) feeling frustrated and worried that I hadn't shown just how autistic I am! When she diagnosed me, the assessor even said ' it's not really bad' - which I thought was terrible! But we have to remember psychiatrists are only human, right?!

    As I haven't yet received my report I sent a note to say something I'd said about sleeping well wasn't true. Because I feel like that would be important for my GP to know in future, maybe. So perhaps do the same if you have something(s) specific you'd like included? 

    Otherwise I suspect it's true that the reports don't matter so much as we think, and there's not much we can do about things we wish we'd said or not said. That's life really. I'm trying to focus on who I feel I am and exploring the extent of my autism and how I go on in the world now, away from the theory and comparisons with others or the tests.

    Hope we can find some peace!

  • I don't know about others, but my report was mostly about what autism in general is, rather than my specific signs and presentation of it. And as others have said, the only bit I've ever had to send to most people is the front page with the overly long sentence that says 'This person is autistic'

    I wouldn't worry too much, you can keep exploring your autism without having every little aspect of it in the original report.

  • I think it would be helpful if they could ask the questions and give you time to think and write it down just right for how you want to explain. Because I can type paragraphs to explain something as simple as my favorite color (which isnt all that simple to me) but when I have to talk outloud then im not able to think properly and I dont use many words if any. 

  • I wouldn’t worry - I doubt anyone will ever read the report once it’s written including yourself. Mine came with a one page covering letter confirming my diagnosis and that’s all I use most of the time on the few occasions I’ve needed to prove my diagnosis. My diagnosis was also done in a single interview with no tasks to complete.