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Original poster

ADOS

97 replies

BrightWater · 04/09/2022 00:16

Hello,

I am an adult who has been referred by NHS for an autism assessment with a company that uses ADOS. Please does any one have a website that covers what they will ask on ADOS? Or share your experiences of ADOS if that is not too much trouble?

OP posts:
Original poster
BrightWater · 04/09/2022 22:33

Hopeful bump

OP posts:
BoardLikeAMirror · 05/09/2022 10:50

Hi OP

This link might be helpful:

www.autism.org.uk/advice-and-guidance/topics/diagnosis/diagnostic-tools/all-audiences

Original poster
BrightWater · 05/09/2022 11:18

Thanks ever so for replying @BoardLikeAMirror . I've had a look. I'm wondering what the actual assessments are like within ADOS, e.g. is it one where you make a story up with random objects, is there role play, etc?

OP posts:
BoardLikeAMirror · 05/09/2022 12:17

There was nothing like that in my assessment. I had to complete an extremely detailed questionnaire in advance, and then the assessment consisted of answering more questions - there were two doctors, one asking questions and the other observing me. But it was all based on my actual life and feelings - no role playing or toys or anything like that.

I received an information pack in advance of my appointment telling me what to expect - can you contact them and ask if they have anything similar? It's totally reasonable for someone with (suspected) autism to want to be as prepared as possible to cope with an unfamiliar and stressful situation so they should understand the reason for your request.

BoardLikeAMirror · 05/09/2022 12:34

To add, on a personal level, I don't see the point of toys and so on for an adult assessment.

An assessment is an artificial situation anyway, but a child is probably used to being given toys to 'keep them busy' in random environments and so will react naturally and their behaviour can be compared to the neurotypically expected behaviour; but for an adult to be given toys to play with is an artificial situation within an artificial situation, so they will be aware they are being judged on what they do - and even if they have toys/games they play at home, self-consciousness will enter into the arena when they are being watched because it isn't the 'expected' thing for an adult to do.

Just my tuppence worth there!

Punxsutawney · 05/09/2022 14:02

I did an ADOS back at Easter. I hadn't realised that is was going to happen at the appointment, so it was a bit of a suprise. I was assessed privately and they said the ADOS was the gold standard way of doing it. And they wanted any assessment and subsequent diagnosis to be watertight and accepted by the NHS. Although my Ds was assessed and diagnosed with the autism by the NHS and did not have an ADOS, so who knows what is the right way.

It's a strange experience, but it's was okay. And yes it does involve toys and books. I don't think they want you to prepare for it. Which I absolutely know is hard.
I have masked for most of my life and did wonder if an ADOS assessment would highlight my difficulties. It did and I scored highly.

SnowyMouse · 05/09/2022 14:58

As horrible as it feels, it's probably worth not researching it, as you might change how you react to it.

Original poster
BrightWater · 05/09/2022 18:32

SnowyMouse · 05/09/2022 14:58

As horrible as it feels, it's probably worth not researching it, as you might change how you react to it.

This is a good point. It is a balance between knowledge calming my anxiety and not wanting to skew the assessment.

OP posts:
Original poster
BrightWater · 05/09/2022 18:35

Punxsutawney · 05/09/2022 14:02

I did an ADOS back at Easter. I hadn't realised that is was going to happen at the appointment, so it was a bit of a suprise. I was assessed privately and they said the ADOS was the gold standard way of doing it. And they wanted any assessment and subsequent diagnosis to be watertight and accepted by the NHS. Although my Ds was assessed and diagnosed with the autism by the NHS and did not have an ADOS, so who knows what is the right way.

It's a strange experience, but it's was okay. And yes it does involve toys and books. I don't think they want you to prepare for it. Which I absolutely know is hard.
I have masked for most of my life and did wonder if an ADOS assessment would highlight my difficulties. It did and I scored highly.

Thank you. I worry that I don't know which bits of me are masking and which are genuinely me.

OP posts:
Original poster
BrightWater · 05/09/2022 18:36

BoardLikeAMirror · 05/09/2022 12:34

To add, on a personal level, I don't see the point of toys and so on for an adult assessment.

An assessment is an artificial situation anyway, but a child is probably used to being given toys to 'keep them busy' in random environments and so will react naturally and their behaviour can be compared to the neurotypically expected behaviour; but for an adult to be given toys to play with is an artificial situation within an artificial situation, so they will be aware they are being judged on what they do - and even if they have toys/games they play at home, self-consciousness will enter into the arena when they are being watched because it isn't the 'expected' thing for an adult to do.

Just my tuppence worth there!

My instinct is to agree with you. I feel a bit sick at the idea of it really.

OP posts:
BoardLikeAMirror · 05/09/2022 18:48

You have nothing to lose by contacting them and telling them you are very nervous, so can they offer reassurance - they will know not to tell you anything that will compromise the integrity of the assessment, but they might be able to set your mind at rest.

Picking up on subtle signs beneath your mask is exactly what they should be expert at.

Original poster
BrightWater · 05/09/2022 20:29

I will ask on the call tomorrow what I may expect for the next stage of the assessment.

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BlackeyedSusan · 06/09/2022 11:18

ds had an ados at 4. neither dd nor i did. apparently in my case they only use ados if it is not clear from the first process. ( but that was covid and over the phone video so they were trying to minimise in face appointments probably) dd was clearly autistic in the assessment. waiting in a noisy waiting room for 20 minutes primed the pump and she was full on autistic.

Original poster
BrightWater · 06/09/2022 16:06

Call was okay but annoying because it was the same questions as I'd filled in on the developmental questionnaire. The lady was nice. She said she writes up her report and "in a few weeks" I will get an email link to an online assessment with "various tasks" but could not be any more specific.

I now feel worse than before because of more unspecified waiting for an unknown assessment. Oh well.

OP posts:
SnowyMouse · 06/09/2022 16:10

I got the option of doing my ADOS online or face to face, I did the face to face...so it maybe they're offering it to you online (ADOS is a series of tasks/conversations).

Original poster
BrightWater · 06/09/2022 16:38

SnowyMouse · 06/09/2022 16:10

I got the option of doing my ADOS online or face to face, I did the face to face...so it maybe they're offering it to you online (ADOS is a series of tasks/conversations).

Yes I think so. It's now the wait that is upsetting. I'd love to be one of those people who can stop ruminating at will.

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SnowyMouse · 06/09/2022 17:23

I hope you don't have to wait long, or find out the timing soon.

Original poster
BrightWater · 06/09/2022 22:01

Thank you. It is baffling to me that a process to identify neurodivergence has a mysterious timeline when one might assume that we are patients who would benefit from more clarity. But what do I know...

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BlackeyedSusan · 07/09/2022 01:17

Quite a bit more than the system.

Original poster
BrightWater · 07/09/2022 12:35

It has certainly been...enlightening... to be on the receiving end of a situation like this.

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Original poster
BrightWater · 08/09/2022 08:44

Email through this morning inviting me to an online ADOS assessment I'm a couple of weeks. I have to have 5 small objects ready.

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Punxsutawney · 08/09/2022 08:55

I wonder how well they can assess online? I know when I did my ADOS they were also looking intently at my body language. Shaking my legs etc

Would you prefer face to face? Or are you okay with an online assessment?

Original poster
BrightWater · 08/09/2022 09:44

I would certainly prefer face to face, yes. Just for personal preference in general but also I don't see how it can be a reliable assessment for autism without being in the same room. I'm not even sure if ADOS in particular is verified for online use in this way? No one assessing me by phone or online will hsve ever met me. Seems a strange way to carry out potentially life changing medical assessments. But who am I to question it Wink

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Punxsutawney · 08/09/2022 09:58

Absolutely, it does seem strange. There were two people in my assessment and the clinical psychologist told me at the feedback appointment that her job had been to watch me in detail! I don't see how that is possible at all online. Oh well it the NHS, so I'm sure they know what they are doing.....well hopefully they do!

SnowyMouse · 08/09/2022 11:47

I'm glad you've got a date now. I wouldn't want to do it online either, hugs. Is it NHS or private?

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