NHS dx of ASD without ADOS??

[peekabooby]

ds is nearly 8, he has been assessed by SALT, OT, EP and Physio alongside Paed appointments over the last two years.

He was finally put on the waiting list for ADOS with CAHMS in July with a waiting list of 12 - 24 mths possibly longer.

All the reports we have all point to Autism with comorbids, sensory, motor skills, tics etc.

He wasn't getting any help in school and was getting more and more anxious plus reading the horror stories about CAHMS on here we took matters into our own hands and had him privately assessed in December.

Today we had a paed app, I told him that we had taken ds for private assessment and he had been dx with Autism. He replied, I dx back in July at your last appointment......what actually happened was he asked what I thought, I said autism and he said I agree, in his report it states M's mum thinks M has Autism and I agree.

He then said that if all proffesionals agree which they do and as waiting list is so long for ADOS this is the dx.

Has anybody had similar from the NHS??

I think it is down to the paed. I asked for diagnosis of dd based on paed's observations and my input as ds is asd and dd looked pretty obvious to me. Paed did write up diagnosis but persuaded me to a multi disciplinary assessment a few months later to tick the boxes I think. I went along with it a little unwillingly just to get the ball rolling.

Ds was diagnosed without ados based on a two observation involving several proffesionals who all agreed with a ex of ASD.

With a dx that should say

One ds didn't have the ADOS as he was very obviously autistic (unable to access mainstream). The paed felt there was no point waiting.

Other ds did ADOS as his difficulties were much more sutble.

In both cases it din't make any differences to the services we received

DS had a dx of AS on NHS before ADOS, they just did the ADOS to cross the ts and dot the is.

in his report it states M's mum thinks M has Autism and I agree.

That is a dx of autism.

A dx is only an opinion. He has made clear in his report that he agrees with your suggestion that your DS has autism. That is a firm dx.

ADOS may provide further confirmation - but you already have a dx.

ADOS really only used for borderline cases or even to rule out ASD here (Scotland though so a lot of the paths are different). The way it was explained to us was 'this is the gold standard for ASD dx, he has seen 3 different peads and a specialist SALT and we still don't know what's wrong, although we all believe something is wrong - so ADOS will rule ASD in or out'

And we waited a year for it.

I am so daft, I didn't realise, I suppose I was expecting bells and whistles.

He is quite obvious even though he is HFA.

I agree, I thought they would have been more definite and I don't understand why they're still wait listing you for ADOS if they have a dx...

Has DS started to get any support?

My son passed ADOS (not autistic)... but was still diagnosed with ASD ..i was talking to his psychiatrist about this a couple of days ago and she told me it was not unusual for brighter children to pass the ADOS and still be diagnosed with autism........the ADOS isnt always necessary.

I was expecting a bit of a fan fare too with the dx but it was just slipped in at the end of the written report almost as an "Oh by the way it's ASD".

Yep - you'd think that after all the effort of getting someone to take you seriously and actually investigate your concerns you'd get a Framed Certificate at the very least.

But no... just a sentence in a letter - if you're lucky.

I didn't even get to the end of the report, dh reads very quickly and when he finished he said "it say autistic spectrum disorder" and the paed just said "that's right"

I was only half way through reading it and felt a bit robbed and pissed of with dh for just blurting it out

I got told 2nd hand when DH had phone call from Psych

Keep querying it until I saw it in writing.

it was tucked into second page, middle of a paragraph.

We have only got verbal dx from private app, still waiting for report. His school have now got the Autism outreach teacher in, but only since we told them in Dec that we had private dx. The autism outreach has said that as soon as we get the report he will get the next level of support whatever that is. It will feel rather good to go in school tomorrow and tell them that we have NHS dx as well.

At the moment support wise he is getting weekly social skills from BEST, they started a friendship group which worked well the first day but he has declined since as he "needed a rest".

They have started to let him use a laptop for a small amount of writing, they have taken him out of the yellow/red card reward system and his teacher does social stories weekly with him.

My dd aged 13 had ados test in Jan which she scored too low to indicate asd on. Got to wait till end of this month to find out whether clinical psych will give diagnosis. She is highly intellegent and in a 2 to 1 situation with adults which is her optimum scenario I wasn't surprised. She's also been working on some of the stuff with school for 12 months and knows alot of what she is expected to say. Camhs here insist on it b4 will give diagnosis for all children hence the 10 month waiting list we've been on!!

My ds age 5 (at the end of this month) has just been referred for assesment. As he is under 5 he is assessed under CDC not camhs who only do ADOS if are uncertain it's ASD!!

To me (and school) dd is much more obviously asd than ds and I was surprised when salt said further testing as she thinks he has mild asd yet I may have to fight more for my dd!!

Hmmmm now it gets confusing, I spoke to the Autism outreach lady this morning as she is waiting for the private report before moving ds up to the next level of support.

Imagine my surprise when she said yes I know you have NHS dx I sit on the multi disciplinary panel and it was decided in Nov to dx.

Grrrrr - doesn't it make you mad that, as the parent, you are the last to be told.