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Ados Monday!!

(70 Posts)
Mykiddies20132010 Wed 29-Nov-17 11:35:30

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 smile

Thisismynewname123 Wed 29-Nov-17 13:24:54

Hi. I have nothing to add, just jumping onto your post because my dd also has her ADOS assessment scheduled for next week after a 2 year wait. I'm also very worried that we're going to come out of that without a diagnosis. The paed that we have been under for 2 1/2 years was the one who referred her, although she is unsure ASD is the answer. She obviously does recognise there are abnormal behaviours, which is why we got the referral in the first place. School do recognise problems, but again, they don't think it's ASD (although I think that could be their blinkered view of girls vs boys, but that's a different issue). They see problems with emotional regulation and anxieties. But if we don't get this diagnosis, I don't know what the next step will be for answers. I'm very nervous about next week's assessment, and the ADOS recognising subtleties in presentation in girls.

Mykiddies20132010 Wed 29-Nov-17 13:41:38

Hiya I also have a daughter going through ados too early next year. School recognise with her but she is now 7 so it's showing more. From what my experience has been with my daughter I have noticed there is a lot of understanding of girls being harder to diagnose in my area. It's good that school have noticed something and pead is actively going forward with assessment. It's just so worrying knowing what's they will be like on the day will ya as parents gel with the drs doing the test ect it's just one worry after another! But I wish you all the luck in the world that you get the outcome your looking for! thanks

pandyandy1 Wed 29-Nov-17 20:28:06


I too was very nervous/concerned that as (at the time) nursery didn't 'recognise' my Son's traits, at ADOS he wouldn't be diagnosed.

He was diagnosed.

Please do search my username for the posts I sent about Nursery's thoughts/his the ADOS went etc...

Big hugs xxx

livpotter Wed 29-Nov-17 20:38:54

My ds (4yo) has his ados done a couple of weeks ago. I was very worried as the previous paediatrician who saw him was really rude and dismissive. However the two people who carried out the ados were very calm and understanding.

One interviewed me while the other went through a series of tests with my ds. They then discussed the individual scores and decided that he was ASD.

His nursery did have input but I think the main scores came from talking to me and observing him.

Hope it all goes ok for you on Monday!

Mykiddies20132010 Thu 30-Nov-17 09:24:13

Thank you panda and potter!

Pandy I did search but couldn't find the post sorry I'm not very good with the forum only no how to post and reply I'll try again yes I had the previous nursery say there was nothing wrong arpart from social anxiety ocd laugage ect ect practically everything apart from autism!
My sons teacher is on a mission to prove me wrong! As far as I'm concerned she can get on with it I don't talk to her about it anymore.
Just waiting to see what happens with the ados. How old wa your son when doing ados? My son is very high functing and his eye contact is pretty good.

Potter thanks you for your reassurance I'm glad it was so smooth for you, how old was your son at the time? Is he hf? Our trust doesn't tell us on the day we have to go back at a later date for our results so it will be a gruelling wait! The salt went into school didn't pick up anything. But on the day the salt went in the made playsdoh which they had been telling my son for six weeks they will do but didn't to that time she was in. He's obsessed with play doh so was super happy.

Thank you

livpotter Thu 30-Nov-17 10:04:05

That's frustrating that you have to wait for the result.

He was/is 4, they didn't say if he was high functioning or not just gave an autism diagnosis. Tbh he's quite clearly autistic, partially non-verbal and very rigid in his behaviours but then it also appears to me that he's a bright child and has a huge amount of potential. So I guess in that way he could be classed as high functioning. They way they described the diagnosis at he end is like a spikey ball with peaks and troughs of strengths and weaknesses. Each child has their own profile.

I guess you have to trust that the people who are carrying out the ados know what they are looking for. The asked lots of questions to prompt my memory but it might be useful to take a list of behaviours with you so you don't forget things. Especially if they seem quite subtle.

Mykiddies20132010 Thu 30-Nov-17 10:35:10

Yes potter your completely right both my children have massive strengths my daughter long term memory is like nothing iv ever seen and my son couldn't talk at 2 and. 1/2 but watched stampy on YouTube and picked up an Xbox controller and could play mine craft survival mode like an adult! We were blown away in utter shock! He completely understood the game and how it worked but like your son is so rigid on routines and rituals can take hours to prepare a sandwich and eat it. His need need for things to be done his way is so difficult. Spends hours not talking daily doesn't seem to join in conversations as such only if it's something about him ect. Fully verbal had speech delay but did catch up after the age of 3. My daughter I questioned as a preschooler but girls being girls they just slide through but now at 7 seems quite obvious espically to the trained eye. I agree with you about trusting the professionals tbh iv always said once you get to the drs ect they seem to understand what your saying and listen and have never made me feel it's my fault or something I've done wrong. Thank you so much I will let you no on Monday how it went xx

pandyandy1 Thu 30-Nov-17 13:49:57

Hi again.

My Son had his ADOS this January gone, when he had literally just turned 4.

He is our 3rd child and although there are so many reasons that we know/knew he is/was different, (and I vocalised these concerns to the Early Years staff who had worked with him,) apart from a very obvious speech delay/disorder, everything I said was just brushed off as 'toddler' or 'boyish' behaviour.

NHS staff though, ie the GP, Peads and SALTs etc. were mostly really great and after taking our concerns seriously, obviously diagnosed!

Pretty sure that my Son's old Nursery didn't believe his diagnosis (and that really sticks in my throat,) but I feel really strongly that they are just really naive about ASD and just haven't had enough 'good' training!
(I have been a TA for over 10 years and received lots of 'basic' training on ASD whilst working in mainstream...but I know far more now about the 'broad' spectrum of presentations since receiving practical experience and 'great' training in the Special Ed school I have worked in for two years.)

My Son is now up at school and I made sure to say (politely) in a meeting before he started, that previous settings hadn't really accepted his diagnosis and I didn't appreciate that because he had a full multidiciplinary assessment!
(This unfortunately didn't stop his teacher telling me that the class TA had questioned his diagnosis, but I just joked that she wouldn't if she came home with us and went on to say that I have been doing lots of research into 'masking' as I too am perplexed as to how he doesn't do certain things at school that he does at home!)

Good luck for Monday!!! We are a stronger family for receiving my boy's diagnosis.


sunshine99789 Thu 30-Nov-17 14:19:55

My daughter had hers a couple of weeks ago, we werent allowed in the room (She is 8) So although she has told me parts of what happened, I know nothing as of yet. We have the final outcome meeting in a couple of weeks time. We also have waited 2 years for this and honest to god as soon as they called her name she skipped in with a smile of her face and complied with everything they said. Im convinced we wont get a diagnosis as school have no issues and she is at expected level academically.

Good luck, I hope it goes well for you x

pandyandy1 Thu 30-Nov-17 19:38:50

I don't know how to copy and paste on my phone or link it, but if you use the search facility and type in 'Just had ADOS, can I share?' I found my old post that I sent literally an hour after ADOS detailing what my Son was presented with and his responses.
So weird re-reading without that feeling in my tummy that I had at the time.

LightTripper Fri 01-Dec-17 12:43:02

Here is the link:
Really useful thank you for sharing!

hazeyjane Fri 01-Dec-17 20:19:18

Good luck for Monday.
Ds had his ADOS this week, and despite the paed saying he seemed to have 'low level autism' , he didn't score high enough for a diagnosis.

Mykiddies20132010 Fri 01-Dec-17 21:06:46

Pandyandy1 thank you for the thread it was so interesting to read! Love how your ds showed signs of reassurance, just show all our kids are on a spectrum and there strengths don't out weigh there weaknesses. How's your ds going now? Hows his development going? My boy is 4 and 5 months. I realised at just before 2 something wasn't right. The health visitor felt the same and has always backed me. We both agreed he's hf as he developed but at 3 after a year of monitoring it was time to refer.

Sunshine oh I hope you get the answers your hoping for I understand with girls it can be harder my daughters waiting for diagnoses to she's 7. Please let us no how you guys got on? If you can explain how you think it didn't?

Thank light!! thanks

Hi hazeljane so you got a diagnoses despite he didn't score high enough?

Thank you all for your reply's really helps thanksthanksthanks

hazeyjane Fri 01-Dec-17 21:32:13

No, the paed said he wouldn't get a diagnosis. Ds has lots of other issues, and it is thought he has a genetic condition (although again, no diagnosis), the wat the paed put it, 'low level autism is part of the constellation of hazeyboy's problems'

Mykiddies20132010 Mon 04-Dec-17 08:25:49

Today's the day! Feeling very nervous! I'll post later to let you no how it goes! confused

livpotter Mon 04-Dec-17 09:08:31

Hope it goes ok!

Mykiddies20132010 Mon 04-Dec-17 14:03:28

Hi everyone we're back, sorry this is long!!!
Well I don't really no how it went he did interact well.
He didn't say high or talk to lady to start with when she was trying.
Once the toys came she wouldn't initiate a lot of imaginative play he could do very basic she said this is my car we're friend come on a ride, my son took her car and parked it with his. She asked him to do a puzzle he was particular where the colours went and struggled a little but with some help got there. She asked what it looked like and he said a person then she said it looks like a rocket if you turn it upside down also asked what else he couldn't answer.
Stacking blocks asked what he was building no answer but had fun and engaged knocking down. The she was saying she was trying to add things some he allowed some times he didn't.
With little figures she said oh iv hurt my leg I need a crutch and the doll hobbled about he just played with the fire engine she asked if her figure can jump on he allowed they had a drink presented and oil can was a drink but he then said this goes with the engine and put it back.
She read a book and asked some questions about a animal unlocking cages he new most answers but was very basic no mention of emotions or anything more big small.
Looked at a picture of a party/picnic he could point out who could be mum and granny and food and what he thought was a farm in the back ground. But didn't no it was a picnic. She asked if he had picnics he said yes where? He said in garden and she asked who with? He said my sister and friends.
Also who lives in the houses he said the children live in this one. Then she joked and laughed saying that would be fun. He was just smiling.
She looked in the other direction to look at a dog he didn't get it first time but did next time.
Again played with little people she said her dog was a cat he said no it's a dog she said but we will pretend it's a cat she asked him to rescue the cat it was up a tree he tried to fix the ladder she said we will have to pretend it works he got the figure grabbed the cat drove the fire engine away. She said he need to go to vets and he just looked at it didn't say anything and carried on.
Baby's birthday what her name he said getsy!?!??? Lol I don't no what that is.
She asked him to make a cake out of play doh he put candles in she put a piece of play doh on top saying it's a decoration he just squashed it. She went to light candle burnt herself he was just smiling and she said can you do them be careful as iv burnt my self he done it quick they sung and he cut the cake and gave everyone a piece she said baby is thirsty so he gave baby the cup.
She said baby's hungry you need to feed her so he put her head to the food.
There were other play although he enjoyed it it was very much her that lead and every so often she would go back to baby saying oh she sleeping or crying he just looked and smiled one time he made a snoring noise.
At the beginning he didn't no his sister age or his teachers name either just looked confused.
At the end she said he interacted well today. They will have to score and do a report and said all the other evidence will account too.

I really don't no how it went I felt although he was in a good mood he didn't understand the imaginative play as much as he should and didn't take notice to being hurt ect sorry to go on but just wanted to get out there what I noticed thanks xx

Mykiddies20132010 Mon 04-Dec-17 14:21:13

Sorry was meant to be she would initiate a lot of imaginative play.

Thisismynewname123 Mon 04-Dec-17 14:24:34

Hi mykiddies. Great update! Thanks. I'm so nervous for ours tomorrow. The detailed process really helps. Do you know which module he was assessed with (module 2 or 3 - verbal or non verbal child)?
Do you know when they're going to get back to you with the results? Were you in the room with them? Did they ask you lots of stuff or was it all the child's assessment only? Keep us updated when you hear back from them.

Mykiddies20132010 Mon 04-Dec-17 14:40:38

This is my new name I'm glad you found it helpful would have been verbal as my son is.
She only asked how's he getting on at school I said ok it's the mornings and afternoons that are a mass struggle and our house is like Groundhog Day nothing changes and it's all his ways. That was it. Just assessment.
Yes I was there it was just a lot of smiling and occasionally I said something but I was just being quiet and watching. They were very nice.
We haven't got results till feb!!! I said it seems along time she said we will see what they can do.
I really hope it goes well for you my son is 4 and 1/2 and fully verbal now. How old is yours? And is he/she verbal? Xx

Thisismynewname123 Wed 06-Dec-17 12:27:27

Hi My kiddies. We had my dd's (she's 8) assessment yesterday. They gave us the results after the assessment (we left the room for 30 mins or so while they scored it) and they diagnosed ASD based on the ADOS and previous appts with the paed. The SaLT had also observed her at school previously. I now have loads of questions that I didn't think to ask at the time which is very frustrating! I want to understand a bit more about what the scores mean. We are hoping to have the report before xmas.
The actual assessment was very similar to yours. As well as they playing they look at gestures, eye contact and ability to respond to questions/empathy/make converstion. I was in the room with her because she wouldn't allow me to leave!

Mykiddies20132010 Wed 06-Dec-17 14:05:20

Oh wow glad you got your results so quickly, how did you feel it went before the results were given? I phoned yesterday and said 2 months it a long wait and I'd like to be seen ASAP if it's possible they were nice and said we will see what we can do and speak with his pead. Do you no her score? I don't understand that part at all. I'm feeling so worried with the waiting now. I felt he did t interact as much as a child should did t really start conversations could really sustain a conversation as such but could answer a lot of questions but ignored a lot of her attempts of pretend play or was very basic. Ignored when she was hurt and the doll was hurt ect. Just seemed to smile a lot tbh and he was moving his toungue around a lot which he does do when people talk to him.
How would you explain your daughter at the ados with the interaction?
What details did they give you with the feedback?

Thisismynewname123 Wed 06-Dec-17 14:48:48

They gave detailed feedback about every section. I really don't understand the score. Her score was 16, which surprised me with how high, considering cutoff is 7, and especially considering i think things didn't come out in the assessment which I consider big issues. I wasn't shocked at the diagnosis, but I was shocked at how high it was. There were certainly things they mentioned that I saw, such as leading questions - they asked her if she has pets, she said no, then silence.... So the SLT said "I have pets". She said "huh" then silence.... Obviously they were waiting for her to say "what pets do you have?". You could see her mind thinking, I know I'm supposed to say something here, but I'm not sure what I should say. So she just kept saying "huh!" and smiling. Things like that. Her imaginative play, I thought watching her was ok, but they said it very repetitive and prescriptive. She kept repeating the same line, and repeating back what the SLT said (I think that's more processing though. She was repeating it back to give herself time to think about her answer). The SLT also talked about her school observation. She played a bit with some other girls, but then it was obviously all too much effort so she took herself off to a corner of the playground to be by herself, and she could see the energy drained off her face from the effort of trying to keep up socially. It was very interesting. I have more questions now that I've had time to process it a bit.

Thisismynewname123 Wed 06-Dec-17 14:50:18

My biggest question is, What now? Will we actually get any support, and if so, what support should we expect (from school, specifically). I don't know where we go from here.

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