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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?

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Original poster
BrightWater · 16/09/2022 17:54

Raddix · 16/09/2022 17:43

You don’t need to give any payment details or sign up for a trial. Just scroll and read it in the browser?

Perhaps I was careless and clicked on a pop up in error. Oh dear!

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Original poster
BrightWater · 16/09/2022 18:41

I have now looked at it properly and it's fascinating, thank you. I score myself around the borderline, I think. Could go either way, but of course I am not qualified to apply or interpret the scores.

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SnowyMouse · 19/09/2022 14:39

@BrightWater what are the maximum scores for each part, I can't see the file unfortunately?

Original poster
BrightWater · 19/09/2022 16:03

SnowyMouse · 19/09/2022 14:39

@BrightWater what are the maximum scores for each part, I can't see the file unfortunately?

I'm afraid I can't fully understand it properly, sorry. I guesstimated I'd be middling from my responses, which were also guesstimates. Very interesting but I can appreciate why one requires special training.

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SnowyMouse · 19/09/2022 16:47

Thanks, fair enough!

Original poster
BrightWater · 22/09/2022 19:09

Sigh. Another non-update: I had not heard back from them about scheduling the call to discuss the results of the assessment, so I emailed (twice) them. One assessor replied to say that they hadn't been in touch yet because they did not want to give me a date and then have to change it, because they do not know how long it will take to meet as an MDT and produce the report. I found this a bit odd that they would not even provide a ballpark estimate or context me themselves to explain before I felt compelled to contact them. I do not know if it is likely to be days, weeks or months. Most odd and unsettling. I've replied to ask for a rough estimate. I'm bearing in mind that this is a private company contracted to provide NHS services so I wonder if I would have a different experience if I was paying myself.

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SnowyMouse · 22/09/2022 19:28

I'm sorry they haven't given you a date for finding out your results. I hope you hear something soon, it's tough waiting.

Punxsutawney · 22/09/2022 19:32

Sorry you can't get any joy Brightwater. if it's any consolation I ended up waiting about 8 weeks for a feedback appointment privately. It should have been about 4 but due staff sickness it ended up being longer.

Original poster
BrightWater · 22/09/2022 20:23

SnowyMouse · 22/09/2022 19:28

I'm sorry they haven't given you a date for finding out your results. I hope you hear something soon, it's tough waiting.

Thank you. It is especially hard with the ruminating and fixating on it, despite my best efforts.

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Original poster
BrightWater · 22/09/2022 20:27

Punxsutawney · 22/09/2022 19:32

Sorry you can't get any joy Brightwater. if it's any consolation I ended up waiting about 8 weeks for a feedback appointment privately. It should have been about 4 but due staff sickness it ended up being longer.

Oh dear, that must have been agonising, I'm sorry. Grey originally said approximately 2 weeks, so I enquired today in order to ensure I had childcare in place for it. Now it is this unknown hovering over me. I hate that I am unable to put it out of my mind. It is not as though I do not have a busy life, but my thoughts always circle back to this.

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SnowyMouse · 22/09/2022 20:36

I had to wait a few weeks because they wanted a psychiatrist to review the MDT's report....I think it was 2 months in the end.

Original poster
BrightWater · 22/09/2022 21:06

SnowyMouse · 22/09/2022 20:36

I had to wait a few weeks because they wanted a psychiatrist to review the MDT's report....I think it was 2 months in the end.

That feels like a long time. I suppose it is good that they were thorough.

How are you feeling about things at the moment?

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SnowyMouse · 23/09/2022 15:11

I'm still trying to come to terms with the diagnosis, it fits but it's sad to see all my difficulties laid out.

Punxsutawney · 23/09/2022 16:52

The unknown is really anxiety provoking, I totally understand.

The report can be a difficult read. It's everything you know about yourself, but somebody else has seen it all too.

I became overwhelmed whilst doing the ADOS and had to leave the room so I could calm a little, that is really unusual for me to show this, I would have normally done my best to mask any kind of difficulty. I think that was noted in the report, as an 'exaggerated response'. But I was very overwhelmed by the whole experience. I'm finding I'm masking less now than I was.

I welcome my diagnosis but the impact autism has had on my whole life is enormous and it's going to take a long time to process things.

Original poster
BrightWater · 23/09/2022 17:08

SnowyMouse · 23/09/2022 15:11

I'm still trying to come to terms with the diagnosis, it fits but it's sad to see all my difficulties laid out.

Gosh that does sound challenging. You are in my thoughts.

I wonder how I would feel to read all of that about myself but to also be told that I am not autistic. Judging from people's experiences they've kindly shared, it seems that it is a challenging experience whatever the result.

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Original poster
BrightWater · 23/09/2022 18:02

Punxsutawney · 23/09/2022 16:52

The unknown is really anxiety provoking, I totally understand.

The report can be a difficult read. It's everything you know about yourself, but somebody else has seen it all too.

I became overwhelmed whilst doing the ADOS and had to leave the room so I could calm a little, that is really unusual for me to show this, I would have normally done my best to mask any kind of difficulty. I think that was noted in the report, as an 'exaggerated response'. But I was very overwhelmed by the whole experience. I'm finding I'm masking less now than I was.

I welcome my diagnosis but the impact autism has had on my whole life is enormous and it's going to take a long time to process things.

Thank you for sharing that. It sounds very hard. I shall have to prepare myself.

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Clarice99 · 23/09/2022 19:51

I'm sorry that you have to wait so long for the outcome of your ADOS assessment @BrightWater It seems cruel to make people wait so long for an outcome as matters like this, situations where we overthink things, can be all consuming, so making you wait seems quite sadistic.

My autism assessment used ADOS, and I was given a diagnosis on the same day (verbally) with the full written report arriving a couple of weeks later.

I found it quite hard to read the report as I had to read/be confronted with things about myself that could be viewed as negative. For example, my meltdown in the waiting room, hiding in the toilet, my short, one-word answers because I was so anxious I could barely speak and this was noted as 'abrasive' which upset me at the time as it didn't seem fair that my anxiety was completely overlooked. I used to mask very heavily, but on the assessment day my mask was nowhere to be seen, lost in a sea of overwhelming anxiety, so that report was about the real me. It was a weird feeling.

Original poster
BrightWater · 23/09/2022 20:07

Clarice99 · 23/09/2022 19:51

I'm sorry that you have to wait so long for the outcome of your ADOS assessment @BrightWater It seems cruel to make people wait so long for an outcome as matters like this, situations where we overthink things, can be all consuming, so making you wait seems quite sadistic.

My autism assessment used ADOS, and I was given a diagnosis on the same day (verbally) with the full written report arriving a couple of weeks later.

I found it quite hard to read the report as I had to read/be confronted with things about myself that could be viewed as negative. For example, my meltdown in the waiting room, hiding in the toilet, my short, one-word answers because I was so anxious I could barely speak and this was noted as 'abrasive' which upset me at the time as it didn't seem fair that my anxiety was completely overlooked. I used to mask very heavily, but on the assessment day my mask was nowhere to be seen, lost in a sea of overwhelming anxiety, so that report was about the real me. It was a weird feeling.

How incredibly stressful for you, both the assessment itself and the report. It makes you wonder who designs and organises these things.

They've now said that my feedback call may be the week commencing 3rd October, which feels both very soon and far away. Logically I know I am very lucky to not have to wait any longer. But anxiety and rumination do not follow logic, unfortunately. It is not in person so I am hoping my DP can take time off work to sit with me on the call because I fear I may simply hang up if I do not like what I hear, which would be rude, embarrassing and unhelpful.

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Clarice99 · 23/09/2022 20:29

I am hoping my DP can take time off work to sit with me on the call because I fear I may simply hang up if I do not like what I hear, which would be rude, embarrassing and unhelpful.

Sounds like a good plan! I sincerely hope that your DP can take time off, and once the call is over, you can both go out and do something enjoyable - even if it's just for a nice walk to 'blow away' the stress of the call

Original poster
BrightWater · 25/09/2022 00:03

How kind. Thank you. Everyone is so kind here Smile

I am having a very challenging weekend with the DC, for a number of reasons, not least because we are so similar.

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BigOldGalaxy · 26/09/2022 18:14

This has been an incredibly enlightening thread so far, thank you for sharing your journey.
I am hoping to pursue an ADHD and ASD diagnosis this year. Fingers crossed

Original poster
BrightWater · 26/09/2022 20:36

I am glad @BigOldGalaxy . I had very much wanted to find something similar at the start of my journey so I am so pleased it has been helpful. I will continue to update.

I wish you well with your journey. I hope the wait is not too long. In my NHS Trust people are prioritised if they are NHS staff, or within 24 months postpartum, or current/former members of the armed forces. The wait then is usually weeks rather than years. Seems unfair to me but I will gladly benefit from it, selfishly. I thought I would mention it just in case your Trust is similar and any of them apply to you. It is horrible to think of people waiting.

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BigOldGalaxy · 26/09/2022 20:45

@BrightWater I don't think our trust has any of those criteria, it'll probably be a huge waiting list but I'm prepared to wait.
Good luck next week

Original poster
BrightWater · 26/09/2022 21:03

BigOldGalaxy · 26/09/2022 20:45

@BrightWater I don't think our trust has any of those criteria, it'll probably be a huge waiting list but I'm prepared to wait.
Good luck next week

Thank you very much and good luck to you, too. Do let us know how you get on, if you would like to.

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Original poster
BrightWater · 28/09/2022 20:16

Confirmation has come through that my feedback call will be indeed be next week. I am very, very nervous, but thankfully my DP can be at home with me. I am dreading the emotional fallout but I hope this week goes by quickly.

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