ADOS assessment (no spoilers)

I've just got back from my ADOS-2 assessment.

It might be overstating things to say it was a disaster, but that's how I feel at the moment.

My appointment was at 2.30pm - I checked the email last night and again this morning just to be sure. I can't drive due to an ankle injury so I had to be dropped off really early. I'd booked a hot desk in another part of the building to use for a few hours. 

At 2.17pm my mobile phone rang. It was the psychologist who said "we were expecting you at 2pm, whereabouts are you?". My heart felt like it stopped for a moment then I said that I was in the hot desking area, and had been there since 11am. I also said I had checked the email again this morning and my appointment time was definitely 2.30pm. 

I was really flustered because being punctual is so important to me. I tried to find the email on my phone to show the psychologist, but she just wanted to get on with the ADOS. I won't go into detail about what it involved but I felt very agitated throughout because of the way the meeting started. I got tangled up in knots by some of the questions and one task made me want to burst into tears. 

Everything felt rushed. I did not get a chance to ask about what happens next at the end. The psychologist said something about me seeing the other psychologist again and I just nodded, even though I don't have any appointments booked. I've no idea if the assessment is over or not. I feel like I've messed everything up and yet I went out of my way to get there on time. 

I've spent ages worrying about the ADOS and I've been awake since 4.30am this morning so I'm absolutely shattered.

I'm sitting here feeling stunned and confused. I forwarded the email confirming my 2.30pm appointment to the psychologist on my way home. She sent it to me herself a few weeks ago. Now I am worried that this might seem rude. 

I know people here will understand just how important these assessment meetings are and how upsetting it is if things don't go according to plan. Thanks for listening to my rant. I feel better now I have written it down! 

  • Thank you so much for this reassurance and advice. The session yesterday ended very suddenly - I should have been more assertive and asked about the timescale then. I'll make sure I am calm and well-prepared tomorrow! 

  • Hi Sunflower, most people have found the diagnosis process to be very stressful and exhausting.  I really struggled with it and like you didn't know what the process was or next steps etc.  Fear not - sadly this is all normal from what I can gather from reading other people's feedback on the forums.  Patience is hard when it feels like so much is resting on an outcome.  Write a list of all the things you need to know if you are going to phone them so you can make sure you get every piece of information you need.  I found being so wound up and flustered, I would forget to ask certain things and then kick myself afterwards.  Making notes for yourself as well after the call might also help in case you need to refer to it later on.  

  • Yes, I think the suspense is heightened by all the years of uncertainty leading up to this.

    Of course if I had tried to get assessed years ago the insight and expertise might not have been there.

    I'll see what happens tomorrow - I may phone if I don't get a reply to the email I sent earlier. I need to learn to be patient! 

  • thanks its been a big deal for me im sure all will be ok and your fears won't be realised i will keep my fingers crossed for you

  • It could be that the fact it turned out bad was good...

  • So glad it went well for you today Giddy. That's brilliant news!

    With my assessment all the evidence is going to be discussed at a multi-disciplinary meeting before I'm told the outcome. Although the waiting is difficult I feel lucky to have started the assessment process so soon after deciding to refer myself. 

  • also i wouldn't worry about pass or fail these psychologists are experts at picking up whether someone is or isn't autistic regardless of how flustered you are ive read other peoples stories on here about how they thought it all went pear shaped only to be told they had been diagnosed as autistic so try not to worry flower

  • i had my diagnosis assessment today with the phsycologist i was there 2 1/2 hrs she spent more time talking to my mum about my childhood probably about 30mins of asking me stuff at the end she said there would be another assessment meeting with questions about my life now etc but she told me that she was in no doubt i was autistic she just needed to conclude what specific group i was in it was tiring but she was really nice and relaxed the whole way through i think after hearing other peoples stories ive been very lucky with the length of time ive waited and the way ive been treated i hope all goes well for you flower you sound like you've had a very stressful time

  • That sounds like it was a very helpful approach Binary. After I left yesterday the two psychologists were going to spend the next hour going through what they had recorded and observed.

    When I email later today I hope to find out if there are any gaps that need to be filled and how much longer it will take for them to reach a conclusion.

    It's very much like an exam, waiting to find out whether or not you have passed, although in this case not passed is probably more accurate! 

  • I can definitely understand this. Although my assessment was shorter than that, the assessor did do a lot of talking about how my responses linked into autism. It was very interesting and helpful. The thing I would have found difficult was waiting to see if I was going to get the diagnosis. It was massively reassuring for me when he ended the session saying I'm definitely going to give you a diagnosis. But yes in some ways now I've been told for definite I'd sort of like to do some of the more in-depth assessment to see what they say about my reponses.

  • For me, the longer assessment helped me to have confidence in the diagnosis. Throughout the 3-4 hours total of interviews, the psychologist was really good at giving me some feedback about how what I spoke about linked to autism, what some of the mechanisms for those things might be, etc. I definitely learned far more than just the diagnosis itself, and being able to see how autism was interconnected with so many other problems that I always thought were isolated issues left me with far less room for doubts about any part of it. Once I got over the initial nerves, it was actually very refreshing to talk openly to someone who actually comprehended what I was talking about, and I looked forward to the later sessions.

  • You are right Binary - I actually found the first two sessions really positive and helpful. Today was a bit like taking an exam. I know they put a lot of emphasis on identifying strengths and weaknesses, so I suppose they have got to see how I behave under pressure. I really appreciate your support and encouragement. 

  • It is confusing. I think there are positives and negatives for each. For me it was amazing only have to go for one assessment as the stress of lots would have been really difficult as I'm sure it is for many people. On the other hand the more in-depth the assessment, the more likely it is to be accurate.

  • Thank you Binary. 

    It's quite confusing that there are different assesment processes. 

    I am sure everything is being done for a reason and I will feel much better once I know what the next steps are. 

  • Do so.  It most likely won't turn out as bad as it might have seemed.  You never know what they might have been looking for.  I worried so much that I hadn't given a good account of myself... yet, when I got my diagnosis, it appeared the psychologist was in little doubt from the very beginning.

  • That doesn't sound like a nice experience. If it is part of the assessment - I don't think it is a very fair thing to do. I would have felt the need to prove it wasn't my mistake too. I definitely agree with Bagpuss about sending an email tomorrow.

    Reading posts like this makes me realise how lucky I was to have such a simple assessment process. I'm not sure how I'd have coped with lots of assessments, waiting, uncertainty etc. 

    I'm glad I didn't have to do the ADOS because I'm not convinced whether my autism would have come across during it (although I kind of want to do it to find out - weird I know). One of the things my assessor picked up was that there are a lot of things I have learnt to do in situations, especially in work and I do wonder if this would have come into play with ADOS. Although I only know bits about ADOS, not the full process.

    Although you look at the assessment as a disaster, if you were confused, upset, flustered etc - it may well have demonstrated more your traits of autism so as far as a diagnosis goes it may not be a disaster at all.

  • A home visit? That would have sent my anxiety through the ceiling!

    Another thing I found difficult today was that these two psychologists were serious and formal. The psychologist I saw at my two previous appointments was more relaxed and friendly. Perhaps this is some kind of 'good cop, bad cop' routine. I need to switch my brain off and stop thinking about this.... 

  • I agree with Bagpuss, Sunflower.   Maybe this was all part of the assessment - devious though it sounds.

    Before I had my formal diagnostic assessment, I had a home visit from someone from the local autism trust I now work for.  When he arrived, the first thing he said to me was 'Can I use your toilet?'  I had to agree - who wouldn't? - but he could tell it unsettled me.  Afterwards, as I discovered, it was all part of testing me.

    Try not to worry too much. Slight smile

  • now that really would be devious!!