Hello all :) I am currently in the process of going through an ASD assessment. This is as a result of a psychiatrist I saw about OCD last year suggesting that I may be Autistic; prior to this Mum and I had discussed it a few times and she had suspected it when I was younger, but we'd then dismissed it as me just being a bit shy/ being particularly intense about my specific interests, so when a professional picked up on symptoms of it I decided I really wanted to be assessed. I have always been awkward socially, been extremely shy and felt 'different' to others, I hated school, I react very badly to change, whether it's big changes or a change of routine, and I can't cope with much socialising or doing too much. I am obsessive about my interests and I have quite a big problem with certain sensory things; I'm very noise sensitive, can't stand certain kinds of clothes and often feel unwell in brightly lit and busy shops.
So I had the first part of what I understand to be a DISCO assessment yesterday; it was with someone who introduced themselves as a nurse (presumably a specialist Autism nurse) and I’ve been told that someone will also meet with my Mum to discuss my childhood and that I’ll also have a final appointment with a psychiatrist. The appointment yesterday covered various aspects of my life, mainly focusing on my childhood. I had taken with me several pages of notes along the lines of 'why I think I might be Autistic' and I was very glad I did, as I felt like the questions I was asked and the answers I was able to give (I was feeling really stressed about it so wasn't really thinking straight) didn't really get anywhere near to the difficulties I have with various aspects of life. Reflecting on the experience, I find myself worrying about two things; that A) I wasn't sufficiently able to put across my difficulties and the things that trouble me, or that B) because I have read up on Autism quite a lot and now know quite a lot about how it manifests, that I was trying to relate everything in my answers to me possibly having Autism, if that makes sense. I almost felt it'd have been easier to go into the appointment knowing nothing and having less of an awareness of what they were looking for.
I am worried about the outcome either way; I feel like if I'm not diagnosed, I will feel really lost as I will have no explanation for why I struggle in the way I do, but I know that if I am diagnosed, because I am such an obsessive worrier, I will worry whether it's right or not and worry that it's just because I've focused on particular aspects of my character that seem more 'Autistic' than others that I've been diagnosed, if that makes sense.
There were a few things I've worried about particularly today; eg I was asked about my hobbies and couldn't really name any as although I have a couple of very specific and very intense special interests, I wouldn't consciously call them hobbies, they are more like my way of life, so when put on the spot I didn't have the thought process of 'oh she's asking about hobbies, now's the time to talk about my special interests even though I wouldn't call them hobbies as such'
I think I may try to get in touch with the center to see if I can submit some additional notes. I was just wondering if anyone else had experienced any similar worries relating to their assessments, ie worrying about whether they'd managed to put enough relevant information across without feeling like they'd gone too far, if that makes sense? I did mention to the person I saw that I had read up on Autism and was mindful of the fact that having knowledge about it tended to make me try to analyse all aspects of my life through the lens of possible Autism, but she didn't really give an opinion on that.
Thank you for reading :)
Yeah, I could have written that myself and still, after more than 12 months diagnosed, I still wonder! I wrote a post about it the other day, asking if a non autistic person who thinks they might be autistic would obsess over it so much! The resounding answer was no! I don’t think anyone can obsess like we do!
But yeah, honestly, I had and still have, the EXACT same thoughts as you. It’s normal. For us aspies anyway. I’m slowly getting used to it so I don’t pay as much attention to those thoughts any more, unless I’m tired or something. Oh, and yes, I’m the same when asked a question. I realised days after my esa assessment last week, that I’d answered a question all wrong, because I took what he said literally and blanked out all but one option, which I told him but on reflection, it wasn’t a correct answer.
And don’t worry, my assessor told me that they’re looking for completely different things than what we think they’re looking for. They’re not looking for the things that are on the online questionnaires. And I had somebody observing me all the way through as well, which made me feel a bit better. I don’t think you can fake a positive diagnosis because as I said, they know what they’re looking for.
Hi BlueRay and thank you so much for your reply, that puts my mind at rest a bit! That's a really good point re non autistic people and obsessing; I must admit I did think when I was typing out some extremely detailed notes regarding things I'd thought of since yesterday's appointment to possibly send to them or take with me next time that perhaps the fact I was doing that and obsessing over it so much might actually be a symptom in itself! I find I feel a great need to let them know absolutely everything I think of that might be relevant, I wish I could relax about it all a bit.
This is so true! I kept giving the psychologist who assessed me detailed examples from childhood and early adulthood. In the end she reassured me she did not need any more information but I still felt compelled to provide it. The process of going back over things in my past has helped me to understand myself better, I think. After getting my diagnosis I started going through events in my life again, seeing them from a different perspective. A few weeks on from diagnosis and things still keep popping up in my mind.
Don't worry about your assessment - often it is not what you say but how you communicate that they are most interested in. Assessors are incredibly observant and good at pressing buttons that bring out our autistic behaviours, even if we are used to masking. I was quite open about the fact that autism had become my special interest and the fact that Imhad read up on it did not compromise my assessment at all.
Good luck with the next stages. If you feel like sending in additional notes I would go ahead and do so. My psychologist said she always welcomed additional information. My notes were so detailed that I only got up to the age of 26 (I was 58 when assessed). That alone took about 24 sides of A4!
Hi Sunflower and thank you :) Thankfully I had an email back today saying I was welcome to send more information so that's a relief, and reading about how many pages of notes you made about yourself has given me the confidence to make more than I had initially; I started off with just six pages as I worried I was saying too much, but then I was also worrying that I wasn't covering everything, so I'll send over some more detailed ones to them now and hopefully that will put my mind at rest a bit. I've been told it could be a couple of months or more until my Mum is seen, and then presumably quite a while before I'm next seen, so I'd like to be able to feel like I'd clarified some things in the mean time.
Yes I think going back over things has definitely given me a better/ different understanding, it feels like being able to put things into a sort of context. I found as I went through the interview I kept remembering more information relating to things I'd already been asked, and then I'd start going back over things, so it all ended up feeling a bit disjointed which is something that bothered me. I'm much better if I can take the time to think and type/ write things down rather than answering verbally.
That's good to know that you mentioned that Autism had become a special interest itself and that is didn't compromise anything. Masking was one of my worries in that I think I've become quite good at that over the years (though interestingly things others have said have made me think that perhaps I've been less good at it than I thought!) and I was a bit worried as I didn't feel like I could consciously not mask some of my behaviors if that makes sense; even though I knew it was important to 'be myself', the masking has become so much a part of myself that I can't really drop it (or indeed really function in any sort of social situation without it)
Yeah, me too :)
Yes, they picked on some things during my assessment that I wasn't even aware I was doing.
Yeah, me too. The funniest was when I asked him why he had started to tell me about a holiday he had had. I said that was random and annoying, why did you do it? And he pointed out that it was called two way conversation and I clearly didn’t have it and that was one of the signs that told him I was autistic! Lol I probably said, well don’t do it again it’s annoying!