Ados Monday!!

[Mykiddies20132010]

Hi, I Received acall yesterday saying ds has his ados on Monday. I'm so worried we have been waiting 2 years for this. It's with 2 different peads that haven't met him before. I have no idea how he will react. He's hf and school don't see any problems. We had the pead review only last week and I showed a video of his spinning and eyes gaze to the side he seemed very interested in this and asked about his sleeping and perscribed melatonin. So dr has been very understanding. Will the school reports stop a diagnoses? When I said to the dr they won't pick anything up he's said it doesn't matter.
After such a long wait it's so worrying we will walk away without the diagoses and the understanding my boy needs from the school. Can any of you explain how the ados was and if they picked up on the subtleties ect? Just need abit of reassurance with it so near!! Thank you in advance

We had ours today! Not really sure how it went so would love some feedback from those who’ve had theirs.
We went in and he didn’t really converse or say hello, just came out with some random fact as they walked in. First thing was the puzzle, she prompted him twice and eventually he asked for more pieces. Then it was imaginary play. He played for a bit then grabbed 2 of his drawings (he obsessively draws a character) and then joined in with them, started acting out a YouTube show. When she was asking him questions he was looking at me but talking to her (?) I don’t know if avoiding making eye contact or looking at me for reassurance? Next was a book, he told the story very literally was able to pick up the emotions (happy/sad) etc I have no idea if they were correct or not. When she asked him he couldn’t elaborate any further on the emotions. She showed him a picture (not sure what it was of) and she asked him what he saw. He said “the dots” at these times she was asking him questions and he would glaze over and talk about something else or try and change the subject. Lastly they gave him one of those pin art toys and moved away, he sat and played with it for the whole time they were chatting then she came back and took it off him. He repeated her phrases a couple of times, ie “now we tidy up” he would repeat it. I’m unsure what to think as he was very happy to talk to her (just not look at her when doing so) had imagination, didn’t really do any of his “stims” and was definitely far more conversational than an average day. We have to wait until the 8th for any idea of diagnosis.

Don't worry if your child came across very capable in the test, it is very well designed to observe the clinical aspects of autism so even if he was conversational and seemed less anxious they will see from his responses whether he had difficulties in specific areas. my ds was like the most sociable capable version of himself during his ADOS but they still noted lots of things I didn’t spot.
Congratulations on getting to the point of testing though, it really is an uphill battle isnt it?

Wishingonabar - I’ve never done something so exhausting and degrading in my entire life. Some answers either way would be good now although if it’s not asd I don’t know what it is

Good luck

Has anyone had any reports back yet? I phoned this morning to see if I could get a cancellation, to which I was told that my appointment had been cancelled and not rebooked! The next available date was months and months away, so she said I’ll get her to ring for a phone consultation but they are being booked for February already! I finally had a call back to say she would discuss on Monday at 2!!? So I’ve gone from having a month to wait, to a week. I’m driving myself crazy thinking it all over. Even google must be fed up of me now 😂

😂😂😂 oh yes Google's like can this "irrational mother" take a break google can't grind anymore info!
Iv tried getting intouch and still nothing on a meeting nooner then feb to discuss results everyone's off sick. Tbf there's a lot going around.
I hope your right bear and they took all the notes I did!!
I wish you all well in getting the Answers you need merry Xmas xx

Mykiddies, yup that’s me! lol! February seems like AGES away! You poor thing

Hang on- you have to wait till February to hear what the results of the ados is?
Forgive me for skim reading but if so I would be complaining. They could easily tell you and to keep you waiting is not very fair surely.x

We had our results back recently, no diagnosis. They are refusing to look into it any further.

Sunshine, that is appalling! Here, if you’ve got to the point of having an Ados there is some very real concern. I would be extremely disappointed if we were told they weren’t going to investigate any further! Are you going for a second opinion?

I have asked and sent an email and they seem to be rather shirty with me since then as 'the results are the results' im questioning the content used as some valuable reports havent even been used! but basically im just back to being treated like a neurotic mother and back to putting the blame on me... sigh

The Ados isn’t even a yes or no diagnosis either way, that’s well documented. Sending you hugs ❤️

Hi everyone, well disappointing news, our peaditrican wont do anything over the phone. He hasn't got any appointments till ours on the 6th of feb. We are on the cancellation list though if anything does come up. He confirmed that my son has to attend the appointment aswel. Which I no this is sometimes not always the case. Do you think it's because he could be making a diagnoses or not? Could they tell me over the phone? Could they tell me they won't make a diagnoses over the phone?
Any advice would be appreciated. Thank you

I still don't have anything to offer you, but I really feel for you that you have to wait so long. I was surprised that we got our diagnosis at the same appointment (left the room for half an hour whilst the paed & SaLT discussed her/scored the assessment). My daughter was there. The SaLT played with her to keep her distracted while I spoke with the paediatrician. I can't imagine the stress of the wait. Timing with Christmas is unfortunate, but even so, it seems very unreasonable.

Awaiting our call (2pm) I feel sick :( will report back x

Hope you get some answers x

Thanks this is my new name. It's so long! Iv expresses this but there is nothing they can do unless a cancelation.
In our area they don't do ados and diagnoses same day but usually they see you in a a week or 2 there's a massive back log here as part of the services shut down about six months so there rushing through the ados but the availability for the next meetings are so delayed.
Can the discuss a diagnoses over the phone?

Oops username I hope it goes well st back to us and let us no?

Yes they can, pals complaint? Maybe get a rocket up thief backside?its too long to wait!!x

If they can o don't see the logic waiting till then when they can do a phone call appointment and have it done!

If I complain will I start ruffling feathers and making it harder for myself?

I think it's probably no diagnoses because if it were they would maybe squeeze us in

I think you’re second guessing yourself because you’ve had too long to think about it. We had to wait 2 years from referral to assessment, so I was surprised to them get the diagnosis immediately.

Oops, let us know how it went.

Sorry all, I’ve been out all afternoon. Had our call, she gave us the diagnosis of high functioning autism. We knew it already so it feels like a huge relief for us. Huge proof that being chatting and compliant during the Ados doesn’t always mean they aren’t picking it up.

Hugs to everyone who’s still waiting. About to pour myself a large gin. Over 2 years waiting and more before then wondering X

I'm probably not the best person to advise. Had an awful journey with 2 ados as 1st one was no asd but they couldn't explain why we had problems with dd so I had a second opinion to get the same! Fast forward a few years go private and get the dx it not asd but is ADHD and they sent me down the wrong path for years
You have to research, be strong, have thick skin and assert yourself in an informed and positive polite way to get anywhere!
I'm not sure how or if you could get the results any earlier. I do think to wait for weeks is unreasonable and although I understand you may not want to ruffle feathers if it were me I would have to ring or go to my drs to seek contact as I could not wait. It's so hard!!

Waiting- If you dont mind me asking...did the symptoms mirror asd? what were the main ones? It sounds like I am now where you were a few years ago

Sunshine yes - it's very very confusing!
It never seemed to be the right thing the asd pathway and I challenged it all the time as I felt it wasn't right.

Main problem is emotional regulation and for me trying to find out what was underneath it so to speak.
It's very hard to put in words really but the private pead had all of our reports and an real jigsaw to put together. Ironically me and my husband had already come to the realisation after researching that this could be ADHD so when she said it and explained it all made sense. The asd or anxiety never did.

• low working memory- dyslexia- poor sleep- boredom- can't wait for things- can't entertain herself - constant noise - chatter - not being able to do a board game for example- flitting from activity to activity - shouting - general emotionally younger .

Hard to list all really. The pead explained it very well and the report is really good. Said that although dd has a bit of rigid thinking it wasn't asd as asd is a social communication disorder and that is the heart of it. Social communication. That has never been dd's problem and always why she passes ados assessments.

She has had sensory reports done and is sensory seeking (pead says same really as ADHD just the ot term)
Ot and ep reports - has dyspraxia and dyslexia, low working memory ..
All reports when you look back have clues in them that point to ADHD. I can't beliveve they missed it.

Hope makes sense as I'm tired!x