I have an appointment to be assessed and I'm terrified!

[broccolibush]

I got an email (very rude, not very clear or helpful) booking a virtual observation assessment in a couple of weeks time and its sent me into a bit of a spin. I am so, so worried that they'll say I'm NT and that the problems I have are all me being completely self-indulgent.

I've also got a questionnaire to complete and it's absolutely thrown me. The questions quite literally make no sense to me. For example "I am fascinated by dates" - well no, they don't fascinate me because they're not interesting, but I note them and remember them in ways others don't and I sometimes play around with the numbers. How does one answer? Also some of them are ridiculous - "I'd rather go to a museum than a theatre" is unanswerable to me. It's like saying I'd rather eat a rock than a paperback.

Anyway I'm spiralling and just want to not do it. Is this normal? Any advice for the terminally anxious?

My friend had to fill in a 70+ page assessment questioner (ADHD assesment). We (as in a group of women who were talking bout it with her) decided that in many places she was going to write - it depends, and then describe things the way she feels about a particular situation. There's no good or bad answer. Those answers, I believe, are a starting point to a discussion during your assessment.

my assessment questionaire turned into a bit of a rant really. i might have mentioned that if I knew I was boring people then I would not do it and I have no idea. I also mentioned that one has to have knowledge of how other peopl esee the world to answert some of the questions. and that some questions were unclear and clearly written by neurotypical people. I think you need to approach it as a narrative. they are stereotypoically male presentation and how Nt people percieve us sometimes.

Just do what I did, start the assessment off by berating them about the bloody stupid questions on the questionaire and how it's geared towards how autism in males present rather than females. My consultant said he knew from that tirade what the outcome would be.

But seriously, don't worry about it. My husband, my DD(30), my DS(9) and me are all diagnosed and everyone dismissed us not being autistic apart from the experts who did the proper assessments. Different experts, different hospitals, and every time we were told afterwards that they knew straight away that we were autistic, the assessment was just to confirm it. The people who know their stuff really know their stuff.

Thank you for the encouragement. I was so overwhelmed and confused by the questions, and had a real fear of doing the wrong thing/getting things wrong that I have been panicking a lot. That others found it stupid/misguided too has really settled me.

I picked this up with the gp on my initial 10 question gatekeeper questionnaire. It was 'Do you collect things'. No I don't collect physical things, but like you I remember dates, times, information and play with numbers. I don't literally collect things and took the question literally but knew that wasn't the 'right' answer so highlighted the flaw. She said that was excellent evidence to discuss at assessment (I'm still waiting).

The questions aren’t helpful or clear at all. Do I prefer museums or theatres? I think the “correct” answer is museums if you’re autistic. But I prefer theatres because they’re dark and nobody talks to you and you can be immersed in the story, whereas museums are bright and exposed and you might have to talk to someone. Ditto the question about whether you prefer libraries or parties? I like parties - but I’ll sit in the corner and not talk to anyone. I think you just have to qualify your answer with reasons.

I think quibbling pedantically with the questionnaires and turning them in with a three-page analysis of their shortcomings is fairly typical of the autistic response to these. I swear they write vague and unanswerable questions on purpose to see if it triggers an instinctive "well actually", and the questionnaire score itself is almost incidental…

Reminds me of the time I was a participant in a psychology study, and was asked to talk with the researcher's boss so he could assess me and verify my sperginess. I noticed the boss had a rather nice set of Bowers and Wilkins P9 headphones on his desk, and being kind of into headphones, I struck up a conversation about them. Somehow the assessment never happened, and I was delivered back to the researcher with a confirmation that I was indeed autistic. How did he know?!

I'm not saying that you have to scrupulously annotate the questionnaire to get a diagnosis BTW — just saying that what you're experiencing seems to an incredibly common way for people to feel about these questionnaires when they're being assessed. They are ridiculous, and for people doing these I'd recommend going through them in an almost businesslike way, ploughing through and trying not to think too deeply about what they mean and what the "correct" answer is. Though I imagine that by now you've already done them and your appointment is very soon or has already happened, since you said "a couple of weeks", but perhaps other people in that situation will also see this thread and the things people post on it.

I remember my DH being very thrown by a question that was something like 'I find it hard to understand what others are thinking'. He said the question was wrong and he couldn't answer it, because it was impossible to know what others are thinking. I guess that made me think he might be autistic, whereas it only made him annoyed by a 'trick' question.

Yes! It's stuff like "I don't notice if someone in talking to is getting bored" — well if I don't notice it, how would I ever know? It's not like people hand you an evaluation form after every conversation so you can see how you did.

*someone I'm

(always a bad idea trying to type accurately with only one eye open that's 10cm from the screen)

It's making me wonder whether it is the response the form elicits as much as the box you tick that they are interested in. As an NT person I also completed it when DH did and blithely thought things like 'yeah I can generally tell if someone is bored' without really interrogating the question. DH would scrutinise it a lot more and if neither one answer or the other was 100 percent true, he would feel it was a lie. (I did struggle with the libraries and parties question though!) I should say he has never sought diagnosis, so I don't want to be making claims about him.

Yes, the unwillingness to "lie" definitely comes into it… I think it's partly our supposed detail-orientedness, too. I mean, theatre vs museum — is the museum something exciting like several thousand pairs of interesting headphones, or something really dull like a museum of steam trains? Is the theatre going to be a gripping interpretation of Titus Andronicus set in the Star Trek universe of the 24th century, or some toe-curling interpretive mime about a young man's sexual awakening in present-day Bolton?* These details matter!

*insert your own examples as appropriate

Haha brilliant! 😂

Thank you for the new reassurances. The appointment was last week and was the ADOS(?). There’s apparently another one to come. My questionnaire went back with explanatory notes, and I spent much of the appointment asking why we were doing what we were doing. I still have no idea whether I’m actually an aspie or not (my psychiatrist is fairly settled on that diagnosis and Aspergirls had me nodding at virtually every sentence) but time will tell. And hopefully soon.

If they put half a dozen little toys on the table in front of you, told you it was a "break", and then pretended not to avidly watch what you did with them, then it was the ADOS 🤣

It was by teams so I had to provide my own toys/objects and use them to tell a story where each object was something other than it was - the example to assessor used was to call a feather Sharon and have her go to work. Needless to say it did not go well. I managed to discover that cotton buds fit perfectly in Lego minifigure hands though…

How did you find doing the ADOS on teams, broccolibush?

If they put half a dozen little toys on the table in front of you, told you it was a "break", and then pretended not to avidly watch what you did with them, then it was the ADOS 🤣

I had an ADOS about 5 weeks ago and that 'break' completely confused me. What exactly are you meant to do with the items?

What exactly are you meant to do with the items?

No idea; I spent the entire time trying to get the dried-out felt tip on their felt-tip-spinning-top to work.

@Punxsutawney I can’t say it was particularly good for me. I loathe teams calls at the best of times and cancelled both music lessons and therapy via teams during the pandemic as I couldn’t engage properly.

It was particularly odd because they wanted to see all of me, not just my head and shoulders so I ended up miles from the laptop feeling a bit of a dick. Also aged eyes meant that I couldn’t properly see the things she showed me 🤣 so I had to keep scooting closer and peering and then scooting away. Felt a proper plonker.

The one where you're meant to incorrectly play with toys was a bit strange too. (I don't think my autism or lack thereof would be visible behind my utter toe-curled awkwardness at having to play make-believe for the benefit of another adult.)

As was the bit where they make you describe what's going on in a wordless picture book (birds and flying frogs, for me — I mostly tried to work out whether the birds were intended to be corvids).

Can't they develop something appropriate and relevant for adults?

I had the flying frogs too! And then a cartoon of the busiest beach resort ever. Which I described as hell on earth 😂

Oh, and I absolutely refused to do the make believe story bit. I was cringing myself inside out at the very thought of doing something so infantile. I’m not sure what that would tell them.

The ADOS was low pressure for me because I'd already been diagnosed by the NHS using a different assessment, and I was only being ADOSed for the benefit of a research study that wanted participants to have ADOS scores too. I imagine it's quite stressful having to do those things when the stakes are higher. I hope your next appointment goes well broc.

The ADOS sounds very puzzling. I wouldn’t have touched the toys if I hadn’t explicitly been told to?

I’ve looked online to see what’s involved in the ADOS and how it’s scored, but it doesn’t seem to be available anywhere.