DD scored complete Zeros on ADOS test what now?

[Paddington73]

Hi, I'm hoping some of you wonderful people can give me some advice please.

I have posted on here a while ago about my DD (and also about DS1) she is 9 and in Y5, to give a bit of background she has suffered from terrible anxiety and other issues for as long as I can remember and was assessed by the CDC when she was in nursery and was eventually diagnosed once in school with Anxiety but with autistic traits. The report stated she did show some signs but not enough for diagnosis at this time, however should there be more concerns or her anxieties get worse for her to be reassessed.

Fast forward a couple of years and the anxiety was getting much worse as school was getting harder and she was struggling socially (what was accepted in infants suddenly wasn't in juniors and she spends most play times with dinner lady or teacher) but school don't see much of a problem as she masks at school then it all comes out at home. She will stomp about, slamming doors, shouting etc until she breaks down in tears and whatever has happened that day comes out. The only time school really see any issues is when it's something new as DD can't handle change or new things so school trips, transition to the new class each year, supply teachers covering her class, all these are met with major upset and worry. She won't want to go to school, she will cling to me and not want to be left etc.

She also has a lot of sensory issues, she will only take packed lunch as that doesn't have to be eaten in the dinner hall which is too noisy and busy for her, she struggles with anywhere that is busy and has never coped with noise, she is terrified of fireworks, thunder but also won't use hand dryers, a hair dryer etc.

She is also very literal, she doesn't understand jokes or sarcasm and takes everything you say as fact, this also causes issues at school as what is petty squabbles to most girls her age are a massive issue for DD and she has come home distraught many times about something that has been said or has happened with another girl.

I spoke to the doctor who referred me to the school nurse, they suggested a referral to CAMHS. This was a very long process but eventually over the summer they did an ADOS assessment on DD as they felt there was sufficient signs for possible ASD. We have now had the feedback in which we were told she scored complete Zero's across the whole assessment, which they pointed out was very unusual but it means it definitely isn't ASD. However she then went on to explain that she made good eye contact, she held good 2 way conversations, she could read facial expressions and retell a story?? I already knew she could do all those things and I thought the assessment would have been more in depth than that as I had already read about girls being much harder to diagnose!

So my question is do I push this further as I don't feel the assessment she had was right for her or do we just carry on as we are as there doesn't seem to be any other help out there for Anxiety?

You can ask for a second opinion. There are other diagnostic routes to take for asd.

You are right about girls presentation often being different and it's well known that they learn and copy social skills better than boys on the spectrum. I'd ask for a meeting and ask how natural your DDs conversation was.

Camhs commented a lot on how even though when my DS had good attempts at conversation/ 2 way conversation/ engaging the listener he didn't communicate non verbally, it was obviously learnt and for him he didn't make eye contact at all - even when he smiled it was into the distance!

You need to ask for a DISCO assessment! It was specifically designed to pick out those who are hard to diagnose!

Thank you youarentkiddingme and PolterGoose for your replies, it's good to hear other people's opinion so I know I'm not going mad!

I will contact CAMHS and ask for a second opinion but I really don't hold out much hope that they will do anything more than they already have (which unfortunately doesn't seem to be a great deal)

I think my big concern is that DD isn't far off secondary school now and I honestly cannot see how she is going to cope with it. I know a diagnosis won't change that but it may help to get the right support in place to at least give her a fighting chance!

It may be that we have to go down the private route if we can't get answers any other way, thanks for the recommendations PolterGoose do you know of any people or places further north at all?

Thanks again for anyone who took time to read such a long post

Sorry Ineedmorepatience took me so long to type my reply I didn't see yours! So a DISCO assessment is what I need to ask for? Thanks, that gives me something specific to ask about when I speak to CAMHS

We approached Margo Sharp for ds2. She will travel to you and observe the child in school and do an ADOS assessment, she will see you and take detailed history.
I don't think she alone can make a diagnosis, but her reports added to any others from a paed or psychologist will be enough for one.
You could ask for a referral to an occupational therapist who may be able to help with the sensory stuff.

As you have had an ADOS you are legally entitled to request a second NHS opinion. This should be a referral from your GP to a centre of national excellence (DS2 was referred to GOSH HFA clinic - which does both the ADOS and the DISCO, plus EP, SALT, OT etc for a true multi-displinary assessment with about 10 hours of questionnaire completed by both home and school - DS2 had four appointments over a six month period and we waited about 6 months for the first appointment).

DS2 has has a diagnosis from Margo who we saw as we had a tribunal hearing due before GOSH appointments. Margo's report is private. Lorna Wing Centre also sees private patients.

I would stick with the NHS for now unless you need a diagnosis faster than within a year.

I completely agree about the disco assessment. 'Spectrum north west' use this (as well as ados). They are up north and take private referrals.

Vanilla can you use this service on the nhs? the spectrum north west?

No, it's private. NHS staff but working private so you have to pay. They do disco with ados and sensory assessment. Really thorough and because they work for the NHS, the report and results are respected.

Although my son is only 4 we went for private assessment and diagnosis as the NHS wait time was so long. We used Dr Jo Jones (Stratford) and then his ADOS was with Dr Nikki Mills (Leamington). Despite being full time at nursery and having a settling in session at school my view that he had ASD was pretty much dismissed by all nursery staff, the teachers and TA's. But he now has a ASD-PDA diagnosis. He does mask well and has learned a lot of socially acceptable behaviour yet something is usually off or slightly robotic about his responses and trye 2 way conversation is impossible. He does sufficient to fool people. This is common with PDA and those with it are generally far less 'autistic seeming' than typical autisms if that makes sense. It may be worth looking at pdaresource.com to see if it resonates, and definitely get a 2nd opinion re. the ADOS/DISCO.

Vannilla school are buying in a private ed pych and hes supposed to be excellent, theres a pretty long waiting list to see him, so i am hoping that he will be able to say.

Paddington I could have wrote this post! Dd is also 9 and I've said for years there is something but her teachers have told me she's just young for age and will grow out it. She chews stuff, tip toe walks, is quite literally, struggles socially, coordination is bad, fidgets, definite sensory issues all round I've a list of 2 pages of a4! Cahms 2 years ago told me over the phone it was all anxiety and said school should lay off her and she'd be fine!
Last year I took my list to GP and asked to be referred to paediatrician. Took till September to see him and I really had to fight for him not to dismiss us after 5 mins. School sent a letter saying they'd had problems as she gets so upset, we had 2 weeks of constant crying, me struggling to get her in, they struggled to keep her there and she just shut down and wouldn't talk to anyone. How could he say that was normal behaviour. He said he'd send school a questionnaire and if I really wanted he'd see us again jan/February.
Last weekend E got so worked up going shopping in town we had to come home and next day she had to leave the supermarket as said she didnt like it and was crying. I feel so sad for her that everyday life causes her so much worry :-(