2 ADOS assessments within a few months : good/bad/indifferent?

[Handywoman]

I have a private assessment lined up for dd2 next week which includes observations, ADOS/ADI-R.

This is a culmination of 4years of speculation about 8yo dd2's development, which has included severe language delay and social communication issues. We lined up this private assessment due to getting nowhere with NHS (been on the waiting list 14months already) and continued behavioural, social and academic issues with dd2.

Spoke to CDC who have said they have just had some funding for extra assessments. Still waiting for a date but it is possible (only possible, mind) that the NHS ADOS/ADI-R/3di MIGHT could take place as soon as September.

Does anyone have any idea whether two assessments fairly close together is a bad idea?

I am loathe to cancel next week's assessment (I feel private assessments are normaly indepth and worthwhile and we have waited, waited, waited, so long to get this underway). But am aware we need to do what will work best (since a prospective dx from NHS is so crucial). dd2 totally went under the radar with NHS SLT, partly because her private assessment was first and she whizzed through all the 'put the small doll on the big chair' shennanigins.... with girls on the spectrum quite difficult to diagnose anyway, I don't want to make it harder by allowing dd2 to 'learn' how to do it, IYSWIM. Is this even possible?

Any thoughts, gratefully received....

I haven't had any experience of the ADOS but my understanding is that it is an observation of how a DC reacts to certain social situations so I don't think they would correct your DD responses IYKWIM so I'm not sure she would be able to "learn" it as such. But then again I could be talking a lot of rubbish.

Could you cancel next weeks private appointment and rebook again for September if the NHS don't follow through with an assessment date - difficult decision I know - waiting is horrible.

If you can afford it, keep the private ADOS appointment. It's a standardised, videotaped, structured assessment which is very carefully scored. But no 'test' is 100% reliable so for diagnosis they usually balance the result with a clinical history and some professional judgement. It's unlikely the NHS would re-do the ADOS, but it's quite possible they might intepret the significance of the score for themselves.

The ADI-R and 3Di are highly structured parent interviews about autism symptoms. They're quite reliable, but, again, not 100%.

The various results are interpreted along with any extra information about the impact on 'real life'. And then the decision is made: Diagnosis of ASD / Not ASD / Still unsure

Thanks, ladies the guy who is doing next week's ADOS said doing two within a few months is not an issue.

I am going to do what zzzzz suggests, go to both.

I offered to go private for my dd ados, lea wouldn't accept a private dx, we had to wait nearly 3yrs for the nhs.

I find it astounding that 'the authorities' won't accept a private diagnosis.

I assess for autism in both the NHS and private sector. I do the same tests in both and use the same clinical judgement.

How on earth do they justify this? Have you asked them? I'd love to know.

(Their refusal wouldn't stand up in court)

3yrs for NHS assessment? Scandalous.

Nowadays with 'any willing provider' the refusal to accept private dx looks increasingly ridiculous.

Yes it does. Lets hope we see an end to this nonsense. If a private diagnosis is refused, make them accountable. this is outdated rubbish.

By the way, I agree that you could have the ADOS done twice. It's observational largely and any tasks do not attract feedback, so there's no danger of your child learning the 'correct ' response.

Can you put off the private assessment until September? If you asked my 'private' head about this, I would advise you to wait and see what you get from the NHS as you are almost there - I don't advocate parents spending money if they can get what they need for free, I'm a parent too and I sympathise.

However I would be right onto the private dx if this looks like dragging on. There is no excuse for it to drag on, even in the NHS. I received a new NHS referral last Monday, parental interview arranged for Thursday, child observation today, diagnosis will be formulated tomorrow. Waiting 3 years is incredible.

we had to wait 3yrs because in our area there was an 18month waiting list we got near the top of this when the assessment centre closed and all the waiting list was transferred over to a different centre, all those from the centre that closed had to be put on the end of different centres waiting list. lea told me they wouldn't take private dx as parents can get any dx at a cost. the thing that really made me angry was the lea won't take dd dx as it's not worded right.....paperwork says dd meets all criteria for asd....according to lea dd hasn't got dx as it doesn't say dd has asd, just says meets criteria.thats not a dx according to them.

Oh that absolutely makes my blood BOIL, DOH

Takes the actual p*iss