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

[Mykiddies20132010]

That's just terrible but I've heard it no end of times even with the diagnoses there's no help. And in so many cases schools are just not equipped or have enough knowledge to understand our kids challenges. Hugs to you too. I feel so bad that these children have to go to a place to learn where they have little understanding and support.

It's a terrible situation to be in again for another year or so isn't it. How old is your dd? What feedback did you get?
I have no idea what the ados said we didn't even discuss it. It was all about a speech and language report. Which iv found really odd. On our review before this appt in November he basically threw melatonin at us cos his sleep is pretty terrible. My daughters been on it for ages and I was so surprised it offered it as I didn't even get to mention the sleep. Just odd, very odd. Then he won't diagnose. Confused.

[Oopsusernamealreadytaken]

Sorry to hear that some of you are having difficulties. Limbo is an awful place to be! Although in all honesty we’ve been contacted by nobody since our diagnosis. Not even school have wanted to discuss anything with us which is disappointing. So although things are different, nothing has changed. Sending hugs to those who need it

[sunshine99789]

Its so frustrating isn't it? We are also in the 'sit and wait' boat. I have lost the will now with ''professional's' as over 2 years and no one has actually helped her! aside from school, all the things that have helped have been put in place by myself.

x

[Mykiddies20132010]

Well we didn't get the diagnoses but we're redoing questionnaires in a year, and reviewing the situation. Asked for ados results but he avoided giving score. Said it was low below the cut off. I left the ados report there by accident so have no idea what it said. I'm just forgetting about it for a while and focusing on my daughters now as her pead confirmed her ados will be done in the next month or so and it's being fast tracked was on waiting list for September. Dunno how I feel tbh I no he's on the spectrum and I'll give it a year don't want to rush things but after a year and after he's finished his next school year, if we're no further I'll go for the second opinion at great ormand street. I no with my daughter it took time for others to see and each year the pressure amounts on them and it's harder to hide it.
Also in today appointment he wouldn't say hi bye answer any question at all he just looked awkwardly at him and the dr was really trying to speak with him and got nothing back at least that went in my favour.

[Didiplanthis]

Good luck . Ours is in 2 weeks...

[Thisismynewname123]

Good luck and I hope you get the answers you're looking for x

[Mykiddies20132010]

D day is tomorrow and I'm so nervous we got a cancellation appointment in another town at peads second clinic. Just feel so nervous will update with result hope you guys are all well xx

[Mykiddies20132010]

This is my daughter

[Mykiddies20132010]

[Mykiddies20132010]

Thanks for your reply's well for me it's been a long road too. Arond 4-5 years from the start.
I have 2 children dd7 probable asd severe sensory modulation disorder looks like adhd due to the vestibular system sensory seeking school thought this and me pead and OT agree. Although I still do think adhd could be there too. She's in for early ados due to a lot of evidence and pead looking into learning disability.

Ds age 4 was very classic autism till 3 gradually learned to talk but not like having other kids. At age 2 could play Minecraft survival mode but couldn't have a conversation at all. Now will converse on his terms. And can seem social on his terms.
Both kids on melatonin never slept or stayed asleep from birth.
Dd under cahms had appointment today for her aggressive nature strangles and suffocates kicks bites growls. She's going on a course for neuro development emotional delay.
Also down for restbitbe with a local charity.
I new my son had it by 18 months old but my daughter I was first time mum was unaware she smeared poo and ate it ect hated being touched and drank 5oz bottles at 2 days old like most mums I thought oh she's hungry. She didn't wake me up. Oh she's bored. When she started school I asked if they thought she had asd oh no they said no she's a "loner" ...... I believed them...... don't believe, you no your child......... I was right! I moved my daughters school and they saw everything I did!

All I have to say is believe your instincts.... now I do there's no pead that will say no your child child doesn't have autism because I'll say..... ok but my instincts say different and I'll go to great Ormand street for a second opinion 🙌🙌🙌🙌 xxxxx

[sunshine99789]

Thankyou x
have sent you a PM x

[Waitingforsleep]

I'm sure they will understand.
No no no no. I'm passionate about all this. I do not believe it's personality. Pm me and I will see if I have any more things to think of to help. In bed now but I know what an awful feeling it is not to be believed and you feel you are going mad. It's not you and I understand!x

[sunshine99789]

Yes...sorry OP. Im just so desperate for answers. The Dr doing the final outcome said its just some childrens personalities (?)

[Waitingforsleep]

Sorry to hijack thread

[Waitingforsleep]

I'm not an expert but my dd is not like this socially and this sounds more asd like. How do they explain this if this is not asd?
Again not an expert just a Mum who had a 7 year journey and I think I could write a book about that!x

[sunshine99789]

Socially...she is honestly a flipping nightmare! has no concept or personal space, I have 2 separate reports saying how she gets right up in peoples faces and her pitch/tone of voice changes.
Shes not good with people she knows if she hasnt seen them for a while.
Socially at school...she relies heavily on her sister.
She will quite gladly lose the plot with total strangers if she feels they arent following 'rules' (pushchairs on escalators...phones in the cinema etc)

[Waitingforsleep]

Oh and dd is fine in school. Can concentrate too. The key is when she wants to! When it's interesting to her.
Unstructured time is the worst for us!

[Waitingforsleep]

There is of course a lot more to dd than my tired list. My dd hates change too.
They can all overlap too which makes it harder to diagnose.
How is she socially though the whole social communication part?
Maybe read more about ADHD too as they are different pathways to asd. I find it so silly that no one looks and takes an over view it seems to be looking at one thing - no one ever considered ADHD.
Look at Russell Berkeley on u tube he is very good.
We are trailing medication.
Stopped it due to a hic up and re starting after xmas feel free to pm me

[sunshine99789]

Our main problems with dd are-
Mood (can explode at any second over literally anything)
Sensory Issues- can't tolerate crowds/noise. To a point she doesnt know when she is too hot/cold
She is incontinent day and night
Literal thinker
Seems to move around the room alot (not at school) but she can concentrate on Tv/computer for prolonged periods
Cant stand waiting for anything for longer than 5 mins.
Hates changes in routine if shes not warned far enough in advance

I am in the process of requesting a second opinion for asd and getting nowhere fast, I stumbled upon inattentive adhd but im not convinced she fits that either.

Im so frustrated that we have been going round in circles for 2 years.

[Waitingforsleep]

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

[sunshine99789]

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

[Waitingforsleep]

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!!

[Oopsusernamealreadytaken]

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

[Oopsusernamealreadytaken]

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.

[Thisismynewname123]

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.