Repeat ADOS tomorrow morning. I feel sick.

[kinkyfuckery]

Sorry, I know I don't come here often, just kind of flit in and out.

DD has an ADOS tomorrow. I think I've posted about it before - a mix-up with her last one so it's being repeated now that she's stable on her ADHD meds. Her MH worker agrees with me that now the ADHD is being 'treated', the ASD symptoms have gotten worse.

So today I filled in the questionnaires (again!). This time, though, they'd left the score sheets intact so I T-scored the results both from me and her teacher and now I'm all . She's coming out moderate on teacher's and severe on mine.

Then why am I still so terrified that they are going to come back and say no diagnosis?? I am her mother, I know that she is autistic, as she's gotten older everyone knows she is autistic. It is becoming more and more obvious as the weeks go by. So why am I having to fight so hard for this??

Oh hello KF and good luck tomorrow.

my dd2 has her NHS ADOS next week. she is 8yo and this journey 4.5 years ago when she was diagnosed by private SALT with severe language disorder/delay.

The prospect of explaining and explaining dd's issues over and over, to all-and-sundry at secondary school sends me into a headspin. Primary school are now working well to support dd2 but it's taken 4 years and a private assessment costing £££ to get that far. I know a diagnosis is 'not the be-all-and-end-all' but it surely helps cut to chase! particularly when on the surface they look to be fine.

Next week's assessment feels like a game of Russian Roulette! so much resting on it and I feel it could definitely go either way. Not sure what I'll do if they say 'not ASD'. At the very least I will do and lie down in a darkened room for about a week.

Zero practical advice, but have a

heaps of luck tomorrow, KF

forgot to ask: what happened with the last assessment? Are you under CAMHS or Dev Paeds?

again, good luck!

Hi kinky My Dd3 never had Ados but we were fobbed off for many years. I first raised a concern with my HV when she was 2 and we began formal assessments at 5.5. After being given the run around for a further 3.5 years she was finally dx'ed with Asd on her 9th birthday.

When you know that your child meets the criteria for a particular dx and no one will listen itmis extremely frustrating but hang in there, you will get there in the end.

Dd3 was dx'ed using the DISCO assessment which was designed to pick uo those who are hard to dx, it seems to be able to pick out the girls who are often missed by other tests such as Ados. If you are not successful this time request a referral to someone who can administer the DISCO, There is special training involved.

Good luck

Hi kinky I think the time around ADOS and diagnosis is very stressful (whether you get a diagnosis or not). I found it a hugely emotional time.

Hope it goes well tomorrow.

Thanks everyone.

Handywoman we are with CAMHS. We are in Scotland, and I think things can work differently here. There's been no paeds, no OTs, no any kind of other stuff.... yet. I'm not sure if it comes after diagnosis, or not at all! DDs MH worker has said she has definite sensory issues so we'll likely be referred to an OT after her ADOS.

Last ADOS... well, it was at the start of the summer, so end of June/start of July I think. I was told after the assessment, on the day, that she would be getting a diagnosis of ASD, but they wanted her back on her meds before they could establish exactly what (She had been medicated since April but had to come off them as they didn't agree with her - she was becoming increasingly withdrawn and lost a lot of weight) Then she got started with a different med (which thankfully is much better for her, but still struggling to help her gain weight) and at a review I asked her nurse what was happening. She chased it up and told me that it'd been decided to reassess her once she was stable. So I just waited and waited, then about six weeks ago, at what I thought was a normal appointment with her MH worker (so had brought DD with me) I was told that they'd decided not to diagnose with ASD. I was completely blindsided and hadn't expected it at all. I brought it up with MH worker at next appointment and it all fell apart from there... basically the system as it stands isn't working, noone knows their arse from their elbow and it doesn't work. I told her I disagree with non-diagnosis and she tells me she does too. It turns out that she had chased up to see what was going on, as she'd not received a diagnostic report (neither had I!) and then a clinician who had never met DD, didn't know she had ADHD, knew nothing of her case at all, watched ten minutes of the video and decided on a non-diagnosis.

So tomorrow we have the senior ASD specialist coming in to do her ADOS, as they have accepted that they've fucked up big time. I also have an invitation from the head consultant psychiatrist to review DDs case as "it's a perfect example of how the current structure isn't working!"

It's all very stressful, but all I want out of this is for DD to get the help and support she needs and deserves.

Sorry that's so long, I guess I needed a bit of a rant

You get it out, girl, what a trail of crap! Not surprised you are feeling a wobble. Hope very much we both get an outcome we are confident in. Not much to ask is it. Hand-hold Comin atcha. Very best for a smooth and successful day

Argh they took her in at 10, brought her out after an hour and said they had to discuss things and would be about 30 mins. That was an hour ago!! Why is it taking so long to make a decision. My heart is in my mouth and I feel like crying. Luckily DD is ok because shes got an ipod and some sweeties

ASD and a referral to OT. Not sure how I feel.

Well done, exam passed, no need to fight for a re-sit option

And very sorry, . "A slap in the face doesnt hurt less just because you expect it" was the wise advice i got here: so cancelled the rest of the day & went round to another ASD mum for lots of and

Oh well done kf I am happy for you, although I imagine it is far from straightforward to be where you are right now. Time to just 'be' for a bit.

Well done and I hope it's positive once the numbness wears off.

Dd3's diagnosis has been a positive thing for all of us.

Take some time to absorb it and then move forward with your lives.

Good luck

((hugs)) it is always hard to hear a dx, but I'm sure it will help you move forward. Be kind to yourself until you absorb it.

Sorry to jump in on the thread, im new !, but does anyone know if you can get an ADOS test privately? My youngest had it done beginning of year for her to come not on the spectrum, everyone including professionals and her consultant were very shocked with no diagnosis although it was very close on diagnosis, at the moment it's learning difficulties and global delays but very frustrating as I know my child, at first I did not want to believe my child was delayed and all professionals told me she was severely delayed, now I am fully accepting of it, seems that nothing is getting done, she's been known to the consultants since 17 months old ( she suffered a seizure which lasted 45 minutes for no aparent reason, no illness etc, that was 17 months old, she didnt walk until 23 months old, had ne case where her feet had locked in a down wards position and she couldnt walk for 2 days hospital was baffled, then just went back to normal, shes had ct scan and mri and a tiny cist was found on the brain but was assured not to worry as it was 'nothing' how are you supposed to not worry?? shes had her chromosme tests and fragile x tests epilepsy tests all come back ok she went to a centre for children with needs like hers for 15 months which was amazing but now there's nothing in place for her except for me taking her to playgroups where the children are younger as all her age are in school now) now 3.7 years old I would definitely say she's on the spectrum, we are waiting statement for school after firstly school saying she could go mainstream no support, to me fighting for support being awarded 5 hours then the school refused saying only can start with full one to one support, so it has gone back to panel. she has major toileting issues psychologists have said to delay potty training for 6 months as the last attempt needed up in persistent UTIs as she was holding and refusing to go, then holding her bowels to the point where she was going 6 days without actually going for being scared to pass as they were getting so big she was on the verge of passing out on one occasion, she's now on movicol, alongside melatonin for sleeping issues, has very poor appetite ( I don't know how she does it sometimes) I am stressed to the max with the whole school situation as I feel I don't know what to do for the best as she's missing almost all of her first year, very worried as got the other half saying just put her in to school but I know she needs the support and clearly now the school understands too, she is an escapist managed to get out of the class room n a trial day with her portage worker and thats not scratching the surface with the behaviour that can be presented its such a shame as with the right support she does really well and is a happy little girl. Sorry again for posting here I am new didn't know where to start a question has turned to a ramble lol xxx