Had ADOS- now what?

[Whatcouldpossiblygowrong]

Had ADOS done last week. They said they can see- mostly from our description of our son that there are some difficulties -but that in the observation he was friendly, identified emotions and seemed to be able to do two way conversation. They said to inform the school he is somewhere in the spectrum but a full report will follow that gives more detail. Not to sure what to make of this?

offs. sounds terrifying. we are not there yet for dd. for ds I thought he had done too well with the assessment (ados) but he still got a diagnosis.

Really? In what way did you think he had done too well?

DD got a Dx despite what I thought was a good ADOS. She was occasionally a bit literal in her play, didn't want to join in singing happy birthday, and didn't ask the interviewer about her holiday (when she left a mile wide gap... Though DD wasn't yet 4). I think they also thought her eye contact was a bit less than typical. It sounds like they are saying he's on the spectrum but didn't have a very high ADOS score? Have they told you how long you'll have to wait for the report? I think ours was within a couple of weeks.

My DS got a diagnosis of HFA despite not meeting the threshold on the ADOS (just outside is what the report said).

The report will hopefully be detailed and explain areas of poor communication as well as strengths.

the only thing I thought was obviously autistic in his test was not realising that the dr was doing pretend play with an imaginary sink, but she mentioned things like he looked at the details in pictures rather than the whole picture, he did not do things that they would expect a child of the same age to do in the play time, etc. I thought that as he went over to the Dr and did some of what she said, he would have failed to get a diagnosis. the dr also mentioned something about the birthday candles. there was something he did not do that he would have done if NT

this is why she is the expert and I am not.

They said something about a social communication disorder is clear but add spectrum won’t be clear until added up ADOS. What does that mean?!

They have to score the ADOS in sections. They may have recorded it and need to watch sections with colleagues to confirm the scores. It’s a subjective and detailed assessment.

If they have already said there’s a social communication disorder, then that hints at an autism diagnosis.

Hmm it will be interesting to see what they say in the actual report. I kind of felt like based on the questions they asked us there were a lot of red flags - whereas he’d been fine in the observation . But surely the ADOS doesn’t account for our answers and should just be based on their assessment of his strengths and weaknesses ?

That's right - the ADOS is just a score and should stand on its own - but it shouldn't be the whole basis for assessment. It would be taken together with their broader observations (e.g. if they've observed him at school or had reports from school or elsewhere) and the interview with you before coming to a diagnosis (or not). In DD's case the full report (by volume of text) was only about 1/5 ADOS and the rest was based on other information. But I don't think there is any overall scoring/weighting - the ADOS score is just part of the assessment and taken "in the round" with everything else before making a judgement on whether a Dx is appropriate or not.

You'll probably find there are some things you don't realise are unusual because you get so used to them at home (is DS your first? DD was ours and now I watch DS growing up I think if I'd had them the other way round I may have had suspicions earlier. E.g. DS is already learning how to wash his hands at 20 months just by watching, whereas with DD we had to actively teach her how to do it at 2.5 after she started nursery - but at the time I didn't realise that was "different"). And there may be other things DS does with you but not with the assessors, which can be hard to spot (e.g. DD does a lot more joint attention and eye contact with us than with people she is less familiar with - but I never would have noticed).

The ADOS is very sophisticated. My DS’ assessment distinguished his (very good) learnt skills like eye contact and use of gestures for the way those skills are used by someone who does them naturally. The report also commented on how certain skills are totally lacking (no spontaneous conversation) but that he will converse if an adult keeps it going and prompts him.

I genuinely thought he wouldn’t get a diagnosis when he did such an amaze job during the ADOS. He tried so hard that he fell asleep in the waiting room afterwards because he was exhausted. And the paediatrician took that into consideration.

I have a lot more faith in the assessment process now than before it happened.

Thanks to all of you this is really interesting.
My main issue was that they seemed to be saying based on our interview it was clearly asd but when they observed him he has good social communication and understanding- i felt a little like they couldn’t see what we see- as he’s very different one to one with an adult especially with lots of new toys to play with! however my other half heard it very differently like: based on what you said we were very surprised that he did so well which is very positive, although we acknowledge he has difficulties

Had an email from the Dr. - we should have the full report by Friday . Nervous a bit- not sure why. Doesn’t change anything- least of all my lovely boy who is who he is regardless. But nervous anyway!

I think it's very natural to be nervous. We felt very lucky with ours that it sets out lots of DD's strengths and not just the things she finds harder, but it's still hard to read language about "deficits" etc. Just hold exactly what you've said in your head as you read it. He's still your brilliant beautiful boy and the report is just helping you understand his challenges so you can support him better.

I bet Friday seems ages away to you, whereas Friday is racing towards us faster than a speeding bullet as that is the day we have to get our forms back by.

I hope that you can survive the suspense.

We fill in the forms then it may take a further threee months (or more) for them to send out an appointment.

good luck with the waiting. I hope you get the result that you want.

Thanks blackeyedgruesome we are having a hard week with ds struggling to wind down for sleep and then being tired next day so everything is heightened resulting in many many tantrums. At 8 they are quite big! So we are worn out and just looking for advice.
Good luck with your forms. It sounds like a long ish wait- but if you haven’t already- ask if they can let you know about cancellations cos that saved us two months.

With sleep issues, have you asked for a referral to a sleep clinic? The NAS has good sleep advice for children with autism.

My DS’ sleep has been revolutionised by melatonin (I know it doesn’t work for everyone). Better sleep has improved almost everything else in terms of his coping strategies and behaviour too.

My eldest DS and I weren't diagnosed using an ADOS, but my youngest DS has had one as part of his pathway. We're still waiting for an outcome because he's "difficult to unpick" and spent most of the ADOS upside down.

He got seen in the early summer, then seen by the neurodevelopmental OT in August, and we're still waiting to hear back.

Do you have any support in your area? I volunteer for an autism charity that offers practical peer support in South Wales if that's any help.

Would adore some support. We are in Sussex if anyone knows anywhere

My geography is terrible, but I'll have a look.

There's a lot of support on Facebook (if you're on it), but try and get autistic led support rather than Warrior Mom™ "support". We don't want you bleaching your child's insides and restricting their diets whilst bowing to an effigy of Wakefield .

Oh! And if anything mentions ABA, run away really quickly.

I’m not sure how good they are in Sussex, but the National Autistic Society is great here.

Thanks!
Hug and roll I have no idea what most of those things are- clearly a lot to learn!!!

Still not had the report. But now having a ramp up of ds’s agression at home and at school. Any advice for how to manage the frustration he feels and anger outbursts?