finally had ADOS today

[Handywoman]

So, finally dd2 had a 2-day assessment with a very experienced private diagnostician (specialist EP who has headed up ASD service for the public sector and has been making diagnostic decisions for years). Yesterday the EP spent time observing dd2 at school during lunchtime, settling back into school, and at after-school club, and took her full developmental history from me using the ADI-R. He went home feeling quite happy he would give dd2 and dx of ASD. Then, today, he did the ADOS in my presence (sat quietly behind). This was done slowly and methodically with brief explanations for me at appropriate intervals. This was a really useful process to go through. I have no issues with the ADOS or the way it was done. Except that my dd2 scored way below the threshold. Private EP is now perplexed and has gone away to think about it all and consult with his colleagues. He said if he had met her aged 4 she would have been fairly easy to diagnose, or if she had an obsession today she would meet threshold. As it is, he is considering a dx of Social Communication Disorder (newfangled under DSM-5).

Ultimately this leaves us still paddling around in the dark ie no diagnosis. This, I am ok with, I am just pleased that someone has taken a comprehensive look at my dd2 after all this time (been under Community Paeds for 4 years, tis is our first ADOS). As long as we have some pointers and a comprehensive report I am happy.

Just wondering: what next? EP said NHS diagnosis is unlikely (NHS ADOS/ADI-R and 3di still pending, may happen in the autumn). But I am left thinking if he has such experience and feels that her difficulties all come down to the same, ASD-type core (those were his words) is it possible that something about the ADOS is preventing girls from getting a diagnosis? I am concerned for example, that early in the ADOS he asked dd2 to tell a story using props (actions figures etc.) and yet she blatantly did not do this (started fiddling instead with the most interesting fiddly toys), he had to prompt her, yet she scored 0. What do others think? Sorry for my post ADOS ramblings......!!!!!! Your wisdom/thoughts, anyone?

How frustrating for you!!
I was in a similar situation with Dd3, the psychiatrist that did the DISCO assessment on her said that she met the criteria for Atypical Autism because she wasnt obsessive enough for an Aspergers diagnosis. Then she changed her mind and gave her an ASD diagnosis because she felt that not enough people know what Atypical Autism is!!

Dd3 is obsessive but not the same as boys who obsess over train and dinosaurs. I think watching the same series of Tracy Beaker veirtually every day after school or having to rush home to make sure we dont miss Horrid Henry or learning all the flags in the world must be slightly obsesessive...... Mustnt it??

I hope he comes back with the sensible diagnosis!!

Oh blimey I should have told him about the Peppa Pig compulsion which has, admittedly, just finished age 8

ADOS is not always good for assessing high functioning people who have adapted well. But it is about the only tool clinicians have.

We are going to have 3Di as apparently it is good at diagnosing high functioning cases or borderline ones. Hopefully done in Sept.

I am as confused as your are OP.
Is the ADOS tool adapted to suit the age and IQ of the child being assessed? There is no way my DD (nearly 5) has the spoken language to make up a story about toys/figures.

Our paed refused to even consider assessing her for ASD as on her words "her IQ is too low.". That was 6 months ago. Since then a lovely NHS special needs SALT has overruled her and has put her on the waiting list finally for formal assessment for a social communication SD disorder. Am assuming this is a wishy washy way of describing autism.

Hi Poshcat, yes he used the right module (module 3). dd2 has always found describing and telling a story difficult. Aged 5 she would really have struggled. She is now 8. Just a shame the diagnostic tool is so rigid (pardon the pun). SCD is not another way of saying ASD, it is officially ASD minus the restricted interests/repetitive behaviour. Although this new SCD is contentious and some question it's validity outside of ASD. Confused? You will be.

I think [although feel free to correct me if I am wrong] that the DISCO was developed to pick up the tricky to diagnose more able people who ADOS is not so suitable for.

My Dd3 has developed many coping/masking strategies but with the right knowledgable proffs who were able to unpick her issues she did get a dx.

The SALT that assessed her was very good at looking beneath her very sophisticated langauge and finding out that there were many areas that she had little understanding in.

I think maybe you should challenge the proff and ask him what support she would get with a SCD dx compared to an Asd one. It might make him think, especially if yesterday he was so certain it was Asd!

Good luck

This Prof has liaised with Indie SALT who has known dd2 and worked with dd2 since 2009. Has all the reports. Indie SALT feels there are residual issues with semantics/pragmatics/non literal language and expressive language varies from very poor to excellent depending on how it fits with dd2's own agenda and interests

Ineedmore Prof did mention that a dx of SCD was of questionable/untested value in terms of accessing support in the state system. ASD much more useful to us, if we can get this dx. I feel in my bones that she needs it. Right now we are walking the dog and dd2 is roundly telling me off for going the wrong way.... right now it is tempting to accept ANY dx

I hear DISCO is better for girls. Not on offer where I am.

Shame that!

I got to the point of excepting anything Tbh, so I know what you mean. It came right for us in the end and I will keep my fingers crossed for you.

Margo Sharp SALT is authorised to administer DISCO and specialises in girls and the hard to diagnose.

She is very good. Expert witness at tribunal but the LA conceded before she had a chance to speak. Expensive silence. She has written articles in various SEN magazines - google her.

How can an EP diagnose? I understood it was a medical diagnosis and had to be made by a medically trained professional. Regardless of how good any EP might be...

I have doubts about the ADOS for girls, personally. I think with girls you often need to look at the bigger picture as the difficulties don't always show up in one conversation or even in 'presses' like the ADOS, but there will be a history of social communication failures in macro.

She certainly has many many social communication issues. I gave him a glut of examples, all of which he documented. After-school club told her assessor that dd2 gets tearful and upset EVERY TIME SHE GOES (3 times/week) because child X was 'not playing in a certain way'.

So I have the draft report in....

"dd2 displays a pattern of quite distinct differences and difficulties in each of the areas of development that are considered to form the core of ASD, and which are central to the diagnostic criteria. I do not feel that this pattern can be accounted for by the expressive and receptive speech and language difficulties she has experienced or by her on-going hearing difficulties...... Although she does not meet the formal diagnostic criteria, is should be emphasised that her difficulties are real and do have a significant impact on her day-to-day life. This impact may become more evident as dd2 gets older, most especially in terms of peer interaction and relationships."

So she has difficulties in all areas central to ASD.
They affect her on a day to day level.
But she does not merit a formal diagnosis.
Feels like we are so near.... and yet so far!
Forgive me while I feel a bit... ahem... gutted and rather blimmin confused

Deffo feel like breaking into the Goose&Carrot!!!

Hmm. Not terribly useful :(
I think we might get a similar response to Ds's assessments....

Handywoman, I'm certainly no expert, but it seems very confusing, particularly the EP's comment that your DD would have met the threshold for dx if she had an obsession.

I think especially with girls, the behaviour/interest triad can present a bit differently. I wouldn't say my DD is obsessional about anything. She does however have a strong liking for a particular colour. She also likes sameness, as opposed to routine. She is starting to show some imaginative play, but she doesn't really understand abstract concepts. It seemed to be these type of behaviours, as opposed to her having a particuar obsession, which met the threshold for meeting this part of the triad, I think.
Fwiw, DD was referred to EP by the paed at the same time that she referred her to the asd assessment clinic. As things worked out, she was seen by the EP first, shortly after she started pre-school. EP visited us to give feed-back. She was lovely. She explained that whilst she wasn't involved in the dx process, she did see see that DD had some ASD traits,but she thought if DD did get a dx,it would be on the extremely mild end of the scale. DH and I were over the moon, and I allowed mnyself to think that this was all going to go away. DD had the asd assessment clinic the week after, we were given dx on the day, and it was nowhere near as positive as the EP's view. I was gutted! I still don't really understand much of it, but I suppose there must be an element of subjectivity involved in any dx which is based on behaviours.
I'm so sorry that you're no further forward, it must be so frustrating. It might be worth keeping a record of all your DD's quirky behaviours/interests,so that these can be considered as a whole, at the NHS assessment?
All the best to your DD and you.

Yes it's a bit disappointing, there are so many subtle manifestations of restricted types of behaviour with dd2. She is an avid collector of all things nature-related and has a lovely collection of stones next to her bed. Her play is unusual in its intensity, EP has seen this on video and agrees that it is unusually intense. In my opinion it is also restricted as there is never any narrative in her lone play. And she is apt to play with bottle tops, stones and marbles for long spells on her own, using incomplete sentences and 'going into herself' at these times. Her only play with dolls that I have recognised involves repeatedly getting up and going to bed over and over. Pretty restricted and unusual in intensity. This is all mentioned in the report.

Still, if nothing else I am living proof that you don't automatically get a diagnosis by paying for an assessment!!! Haha!!

I am just having a hard time with him agreeing that she is impaired in all areas at a significant and every-day level, needing help as per ASD yet doesnt meet the threshold for diagnosis.

I just.. don't... get it

Yes, that sounds familiar. DD loves her "collections" of wee random bits and pieces. Her doll play is limited to taking their clothes off, putting them to bed, then putting their clothes back on.
If the report is still draft, might be worth asking the EP to look again at your DD's restricted interests, as a whole?
Easy for me to say though, I know it can be hard to question experts. Hope it's all clearer soon

Thanks, just read it again, he has basically said he has observed significant impairments in all areas but many were subtle and from other sources not the ADOS. Therefore she Autistic but not Autistic enough. Or something. I am going to ask if he will give her a dx of SCD.

Also I told him that when she is recalling an event or reporting what someone has said, she mouths the second half of the sentence she's just said. I Googled it and came up with 'Palilalia' (sort of verbal tic, found sometimes in ASD) but he has dismissed it as 'something to help her process information' she would never do it in a straight Q&A with an adult so it would never happen during ADOS or SALT session.

Gah! No such thing as 'mild' end of the spectrum!! Wish EPs and others wouldmn't say that. My DS is mild in terms of rigidity - it's there but it's not his thing. His social communication is mega impaired though. Friends DS has much better communication skills but is extremely rigid. Her DS is harder to manage for sure, but is my DS less impaired? Depends what you are looking at!

With girls obsessions can be age and sex appropriate more often , and can be person based - eg another child or a parent. Horses and classic literature (your DD may be a bit young for that one!) or 'animals' often feature too.

Do you have an NHS assessment coming up?

Yes, just sent off a load of questionnaires. May be as soon as Sept (when I say 'soon', that's in the context of a four year journey - four years from first referral).

Hopefully, since this report draws everything in one place NHS will read and pull it all together and give a dx. Perhaps they will want to rise to the challenge if diagnosing my subtle dd2.

Well I can hope, anyway!!!

Ilikemysleep re obsession with parent... now that is making me think... She is EXTREMELY, EXTREMELY attached to me. How might one define it as an obsession rather than extreme attachment style???

well, is it 'unusual in intensity, scope or duration?' If so, I'd say it fits in the triad....