Wait after ADOS till we find out….

[Lmgb1981]

Hi all,

my dd has her ados last week, has anyone been in the room with their kids while it’s been done? I’ve no idea how it went, she is very behind in school and socially she would rather play with younger kids than peers her own age (she’s 6) very in your face and not understanding personal

I know no one will know but just wanted to rack your brains to see what you think.

first was the puzzle pieces on the board she didn’t ask for more pieces the salt offered her more each time she ran out but was able to make the puzzle pretty much to the last bit the Salt helped her with it.

then they moved on to some little wooden dolls a fire engine a piece of string that the salt told her was a hose and some pieces of furniture, she enjoyed this and interacted with the game the salt said the dad was tired and pretended the tv was on and he wanted it to be quiet dd kept pretending to hide the tv up then she said the dog was babysitting the baby. She lined up some of the furniture too.

next was a book about a gorilla who took the zoo keepers key and let all the animals out (I think) the salt would say what was happening and waiting on dd to elaborate but all she was saying was he has a key literally pointed out what the picture showed etc

she showed her a picture of a beach scene and asked her what she saw, dd said some people and an aeroplane salt asked her has she ever been on an aeroplane dd said yes, salt asked her where she went, dd told her where, salt asked her what did she do on holiday dd said went in the pool and checked out my room (we were in Florida she went to Disney universal etc) but that’s all the information she wanted to share. Then salt said she’s going on an aeroplane next month, dd just looked at her so she said it again dd still didn’t respond so she said it again and dd said no your not and laughed.

then they done the dolls birthday party dd really enjoyed this and engaged really well but this is something she does nearly everyday with her dolls at home, she didn’t react when salt pretended to burn her hand and never blew out the candles didn’t join in singing happy birthday but did use the napkin to clean up the spilled juice and put baby to bed on a chair and covered her with a blanket.

she done the brush your teeth and she put the toothpaste on the toothbrush and says now you brush, salt pretended to brush her hair and said is this right dd said no and showed properly. Then salt pretended she had a mouthful of water and actioned she needed a cup did pretended to hand her a cup.

there was a blanket on the floor and salt used her eyes to point at it, dd didn’t understand this and eventually salt pointed at it and told her to look underneath she looked under and there was a remote control car dd picked it up and looked under it for the switch salt asked her was it broken and did said I think so, she put it on the floor and pulled it a bit by the aerial salt told her to come back to the table and she covered the car back up before she went back over.

bubbles was next she jumped up and down and said l love bubbles she wanted the bubbles but wouldn’t ask and just went and put her hands on the bubble tub and jumped and down. She moved on to the rocket toy she was shooting the rocket at me and salt.

She then took out some pop up toys a jack in the box and some blocks and other bits, she pressed all the buttons on the pop up toy, she wound up the jack in the box but I don’t know whether he actually popped up or not. Salt prompted her to try stack the blocks and dd started then realised there was some numbers on them and tried to do them in numerical order.

she initially has eye contact when answered you but then will look away.

my instinct tells me she is autistic so if they come back and say no I actually don’t know what we will do, she is struggling massively her teacher feels the same as me but I feel she interacted really well during the assessment.

before we left I was given a Vineland ti fill in, I’d already done an adi-r and given forms filled in by myself and her teacher. So I’ve posted the Vineland back to her and hoping it’s not too long till I hear back as my brain is fried.

any words of wisdom and if you’ve read to here thank you so much x

Hey I was in the room with my ds. He interacted really well too, I think he enjoyed it! His play and communication was still seen as not typical... eg the bubbles he didn't ask for it to be opened, the role play was very much on his terms, he largely ignored her suggestions and carried on himself.

He was diagnosed but I left feeling he had been 100% himself on a good day if that wasn't assessed as autism I would have accepted it for now at least and it hasn't changed support for us. We already had an EHCP in place. Hope the wait isn't too long for you x

I suppose I’m looking at her thinking she done really well but I’m used to the ways she’s does things so maybe I’m just so used to her I don’t notice what they will pick up on. The wait is so so hard 😭

Yeah that is exactly right... I almost felt sad that they would pick up on his little quirks in a bad way. I called to get an expectation on wait times (when the panel discussion was etc) just so I could relax in between. His annual review was coming up too so needed an idea. Best of luck, the day I got confirmation I had really mixed feelings... I was 100% certain he was autistic so it wasn't a surprise but hearing it officially affected me more than I thought it would.

I know exactly what you mean, my older son is 19 and when he was 6 we also had him assessed but school weren’t seeing what we were at the time so he wasn’t diagnosed roll forward 5 years the sh#t hit the fan has he hadn’t been receiving any help or therapies and could not get into school without being dragged in his anxiety levels and went through the roof school quickly changed their tune and he then received asd, ADHD, odd, dcd and gad diagnosis I was so angry with myself for not pushing things when he was 6 so I suppose in the back of my mind I’ve been through it before and havnt had a good outcome, I think in your heart as a mama you know x

I have sat in the corner of the room with one DC who wouldn’t stay in room without me. I watched a different DC’s from the room next door. And I have had the ADOS myself, although obviously not the same module your DD had.

I found them all interesting and was surprised at what was picked up. I think you will be too.

They will have noticed DD didn’t ask for the jigsaw pieces and that she didn’t ask where the SALT was going on the aeroplane.

Try not to worry.

Thanks so much x

I think if things come back and she doesn’t get a diagnosis I will bring her elsewhere for a second opinion teacher has stated in her questionaire that she doesn’t initiate interaction with her peers however if someone initiated an interaction she would reply, she does a lot of mimicking behaviours, can’t sit still, doesn’t walk always skipping or hopping, they’ve a theraband on her chair and have her doing chair push ups on her movement break. Puts things in her mouth all the time, looks at things really closely, struggling to retain information, poor motor skills, poor speech, movement seeker. I’ve said the same plus about her sensory issues she runs on tiptoes, chews wet towels and licks and smells random things, yesterday it was grass. She struggles with crowds and noise, has zero patience if she calls you and you don’t respond immediately she’s screaming and shouting, extreme emotions she’s either 150% happy or it’s the end of the world. She’s very in your face no concept of personal space and will say what she thinks no filters. I could go on but I guess it’s just a waiting game. Maybe she got the zero patience from me 🙈🤪

No advice, but my DD7 had her ADOS two months ago and we still don't know the outcome. We have finally got the developmental history and concluding appointment next week and I am so nervous.

She masks quite a lot at school and I've always considered her to be very sociable, though I think there are some differences. Her main struggles are routine changes, emotional dysregulation, need for control, transitions and sensory issues. So I am quite anxious about what the ADOS picked up.

That's interesting what you say @Headfirstintothewild I couldn't watch, but I did quiz DD afterwards. With the puzzle, she said at first she tried to beckon with her hand that she needed more pieces, but that didn't work so she thought to herself that she had to do it "the old-fashioned way" and said to them, "I need more pieces."

She didn't ask where the HCP was going on holiday and didn't ask any other questions in response to information they provided.

Like your DD, @Lmgb1981, she is highly imaginative in eg small-world type play, so would have found that no problem, though she did tell me that the HCP put the doll on one side of the table and she wanted it to be on the other (she is very controlling in her play), but she didn't vocalise that, so doubt they would have picked up on it.

She answered the question on what makes her happy, but said she didn't know to the ones about being sad or angry.

She told the HCP about her best friend and I think gave quite a good answer on what made her a good friend (kind and playing together).

She said "maybe" when asked if she wanted to get married and at first she said she didn't know why people got married. However, they asked her if she knew anyone who was married and she said her uncle was getting married (forgot that her parents are! 😅). They asked her why he was getting married and she gave a good answer I think (that they love each other and want to be with each other). When asked if there was anything bad about being married, she spoke about changing babies' nappies.

She had the frog book and I'm not sure how that went, though I don't think she would have automatically spoken about the characters' emotions unless directly asked. They did ask her what the clouds looked like at the end and she could tell them.

I don't think they did the birthday party role-play at the end, does anyone know why not?

What I intend to do if they say they don't think DD is autistic, is ask them for a reason for her behaviours. So why does she have extreme meltdowns about her bedcovers hurting her legs? Why is there only one pair of pants she will wear? Why do we have to do everything in exactly the same way every day? Why, when we went to visit the opticians recently, did she reach over the desk and touch the optician's bracelet on her arm?

And yes about the extreme emotions - there's very little balance. A lot of the time, she's either very hyperactive, silly, excitable, silly, impulsive or anxiety, distress, meltdowns.

@Namechange65475 when DD2 had her ADOS (diagnosed with Asperger Syndrome - prior to the switch to ASD) the puzzle task was interesting. She is articulate but when she needed the remaining pieces she didn’t ask for them even when the assessor repeatedly moved them out of her reach.

Your DD’s ADOS may have used a different scenario other than a birthday party.

wow 2 months ago that’s such a long time to be left wondering I hope you hear soon one way or another x it’s so hard waiting x

yes that’s a good idea as if it’s not autism there has to be another explanation to her behaviours. I hear you on the exact same routine every day even if we drive a slightly different way somewhere she panics saying I don’t like this way I don’t know this way. The bed sheets being a certain way.

x

@Headfirstintothewild Yes it is quite clever the way it has been designed.

I feel like my DD was quite ambiguous. Like the puzzle task, not asking at first, but then saying something. (Would saying "I need more pieces" score differently to "Please can I have some more pieces?" or "Please can you pass me some pieces?" ?) Answering some of the emotions questions, but not all. Playing imaginatively, but not asking personal questions. I think she would have scored something, but whether that is enough to reach the threshold, who knows.

Thank you... I have been driving myself crazy over-analysing it. (And going just by what my DD told me about it!).

This was with a private provider via Right to Choose. However on the NHS letter sent confirming DD was on the waiting list, it talked about next steps (2-3 years away in our area! 🙄) and in reference to the ADOS, it stated that 4 out of 5 who are assessed (I guess in our area) receive an ASD diagnosis.

@Namechange65475 It may well do. It isn’t just about what they say (or don’t say) but how/body language etc.

DS3 (ASD diagnosis) didn’t ask for the puzzle pieces either. He tried to get them himself a few times and when the assessor put her hand on them so he couldn’t get them DS3 loudly sighed and “exclaimed how do you expect me to finish if you won’t give me the last pieces?”

@Headfirstintothewild Ha, nothing if not direct!

Having to wait so long for the outcome has made me think about it too much in general though.

Like, module 3 (which I think can be used from about 5/6 if verbally fluent?) is quite skewed towards older, more confident children.

Like, would a NT 5/6/7 year old really ask an adult they've only just met where they were going in response to "I'm going on an aeroplane"?

@Namechange65475 lots of DC would ask where the assessor was going. As I said though it isn’t just about what is said/not said.

I realised I put the quote marks in the wrong place in my pp. DS3 had had enough by that point in the ADOS and wasn’t at his best, but he can be just as direct now.

This wondered me aswell as dd had a twin brother who I have no concerns about I think he may have held back more than she did and I don’t think he would have asked her where she was going on the aeroplane I’d say if she pushed it hw might have said ‘are you?’ Or something along those lines but not ‘no your not’. 🙈

@Headfirstintothewild @Lmgb1981

That's interesting.... I don't think my DS would either (he's just turned six). I'm pretty sure he's not ND, but he's quite sensitive and can be quite shy (more so than DD) in certain situations.

Exactly like my ds he would have no problem answering questions but he wouldn’t be curious or feel comfortable enough to ask that kind of question to someone he just met 🤔 maybe I’m wrong though 🤷‍♀️

Just coming back on I caved and contacted them today to ask for a timeframe on when we should get some feedback and they replied saying tomorrow 🙈 I don’t know whether it’s a good thing or bad thing they know so quickly gonna be a long 24 hours 🙈

@Lmgb1981 Good luck for tomorrow...

Our final appointment is next Friday..

very best of luck next Friday 🩷 keep me posted x

Just got phone call and confirmed ‘mild autism’ I hope now with the report she can access the extra help she needs.

Sorry for not responding earlier! That's great they've picked up on your concerns, it must be a relief.

My DD has also just been diagnosed. The report the school gave them said they had no concerns 🙄 but she met the threshold in both the ADOS and in my information.

The ADOS report apparently said that she was very friendly, well-behaved, creative and imaginative, but that she had unusual eye-contact, struggled with two-way conversation, had little understanding of emotions or relationships and displayed sensory-seeking behaviours.

Thanks also to @Headfirstintothewild for your reassurance both on this thread and others 🙂