is this utterly ridiculous or is it just me?? RE Ados test

[Chundle]

Hi all, saw dd2 pead yesterday he spoke about high functioning autism and asked if we had heard anything about the ados test he had referred her for. I said we hadn't and he hadn't either. He said there's a 'thinking list' and a 'waiting list'! And that dd is probably on the thinking list at the moment waiting for the panel at the cdc to decide if she is to get ados or not!!!

Now pead works out of the cdc and is part of their team so surely it makes sense that if he requests a child to have an assessment by the panel it should be done?? Surely the time they spend 'thinking' about it takes longer than actually performing the ados!!!

What on earth happens if they refuse to do it!! He referred before xmas so its been a while now!

My experience is that these waiting lists are massive.

DS1 was put on a list in August and not seen for an ADOS until the next July and that was after lots and lots of chasing.

DS was put on the list in May 2011 and had it in March 2012 - again after lots and lots of chasing. Apparently no new referrals are being taken in my PCT due to the huge backlog - not sure how that works - the kids won't stop having ASD?

Once referred, there are targets they have to meet with referral deadlines.

If the paed has put you on a 'thinking' list then it may be away of building delay into the system as it not being a technical referral. The way most 'good' PCTs deal with this is by referring you privately if there is no chance of being seen within the timescales.

Although having said that my experience of this system where you are referred privately is with other issues with a non-SN child.

It could be they justify this messing around as they assume that it is educations responsibility to address and believe both that there is no 'cure' and that provision is based on need rather than dx!

Is there a timescale for which she should have it then? Or can they keep us waiting as long as they like? Like there's timescales to be seen for other things so surely there must be for this as well.

Star she is only 2.7 so not in nursery as yet I wondered if they dragging their heels until she's in nursery in Sept which will infuriate me!

Imogen its a play based test that lasts around 40 mins. There are several different modules depending on if child has speech or not. They look for child's reaction to things like blowing bubbles, reading a story, playing with figures, requesting a snack etc. They then score it to see if child is on autistic spectrum

Chundle. I couldn't say, but below nursery age responsibility for provision is the remit of 'health' rather than education.

Two years ago I would never have suggested this as it is so wrong but coukd you get a private dx?

Well star that was the intention had things not gone well at pead yesterday. Pead is a totally lovely bloke he sees both my dds. Me and dh discussed and said although its a trek from devon we would try and get her into see Daphne keen in london if they decline the ados or if its going to be too long to wait. We've looked at other private options in south west and there simply isn't any! Priory in bristol only have a psychiatrist so not much good so will prob end up in London!

I believe an ados can still be used up to teenage years they just vary the content accordingly. CAMHS can be notoriously difficult! My friends boy is same age as yours and having same issues as you!
My dd can be a chair chucker if the mood takes her so I'm hoping she will get picked up quickly at preschool.

Ds did ADOS last month Imogen and he is 6.9. Very verbal and dx as ASD (although dx letter I got last week said an ASD (asperger's syndrome) - who knows will question when we see her in couple of weeks.

He had module 3
Module 3: Construction Task, Make-Believe Play, Joint Interactive Play, Demonstration Task, Description of a Picture, Telling a Story from a Book, Cartoons, Reporting a Non-Routine Event/Conversation, Emotions, Social Difficulties/Annoyance, Break, Friends/Loneliness/Marriage, Creating a Story

We were on the thinking list for 12 months, then put on the waiting list but told it was going to be 18 - 24 mth.

We went private got private HFA dx in Dec, at paed app in Jan we were then given NHS dx without ADOS and told that due to different proffs (OT, Physio, EP, SALT) all being in agreement that he would be dx AS, without ADOS.

I can't comment about Daphne Keen wasn't her we saw, but do a lot of research because even though we got a dx, we are not happy with the quality of the report we have received.

I waited 3 years for ados!

If you can afford it go private as it'll save so much grief in the long run.

Life is too short to be mucked about so your PCT can massage it's statistics, as all the delays are very damaging to the concerned.

Imogen - mine was a runner not a chair chucker . Kid could escape Alacatrez.

That's ok Imogen :)

Imogen Have you spoken to National Diagnosis and Assessment Service in Alloa. I have no idea how far they are from you but it looks like your GP can refer you to this tertiary service. There is a number there for contact.

Don't be silly imogen its a free for all on this board :)

def sounds like a way of having a very long waiting list not visable to the bean counters by dividing it up in to sub categories

An ADOS cab be used for all ages. My dd had one in Jan at the age of 13 after an 11 month wait. She scored too low for a diagnosis but the clinical psych said that's common in girls especially in teen years. She received a diagnosis of ASD anywhere because of results of all the different testing they'd done. It was annoying as we'd been in the ADOS waiting list 11 months for them to disregard its findings anyway and diagnose on stuff that was there before we went on the waiting list!