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second opinion ?

7 replies

thriftychic · 09/09/2012 22:31

has anyones child had the ados with the result being no asd and had a second opinion which has resulted in the opposite i.e asd diagnosis ?

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Stillfighting · 09/09/2012 22:41

Ds very complex and had ADOS and we were told that he didn't have the triad of impairments so not autism but 'behavioural difficulties' instead. We were refused a second opinion and our gp wouldn't refer us for more tests as he said if we were told that he hadn't got it then he hadn't so why did we want a dx Hmm. 2 years later we do finally have a dx (ASD/PDA). Think there are a few others on the board who have had similar experiences.

Scottishdancer · 09/09/2012 22:49

Ds also had ADOS test and we were told he didn't have Asd but we have an older son with asp and we weren't convinced so we had him assessed privately and were told he definitely does! Since diagnosis lots of things have fallen into place, and staff at school have said "yes we thought he had Asd" private paediatrician said ADOS assessment is down to the interpretation of the people doing it.

thriftychic · 09/09/2012 22:51

ds2 scored low on the ados 18 months ago , but the problems continue and we still have no answer. we have recently been put with a new worker at camhs and she says its time for a second opinion.

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babiki · 09/09/2012 23:55

Ds will be probably soon in the opposite situation, private specialist adamant he is not on the spectrum and Nhs proffesionals involved are convinced he is... He is going for Ados in November. Wondered if this happens often..

logi · 10/09/2012 01:27

My son had ADOS test at 5 and didnt score as ASD but nurse who took test wanted him assessed again by being watched as she felt something wasnt right and he then attended CAHMS.. where he was then diasgnosed with ASD.

bochead · 10/09/2012 11:37

Yes, so I asked for a second opinion lol!

My son scores v. poorly on 2 aspects of the triad (social imagination & interaction) but is clinically borderline according to ADOS on social communication. This meant the local team just diagnosed him as " social communication disorder with autistic traits" to start with. This was as much use as a chocolate teapot for accessing services btw.

The second opinion bods did other standardised tests a year later, as well as repeating the ADOS, which gave v. similar results. However when they compared them with the other tests (DISCO was one but I can't remember the others) They gave him a new diagnosis "Autistic Spectrum Disorder". They also looked at the NEW criteria for diagnosis which will be officially in place from next year, which takes into account sensory & motor issues for the first time in diagnosing Autism. (He has issues in both these areas)

Apparently "autistic spectum disorder" is coming into use to replace the following labels - aspbergers, HFA, PDD-NOS, PDA & Atypical Autism. The idea is to make it simpler for everyone as they report on severity of the different areas specific to the individual. Children being diagnosed from now on are likely to get one of just two labels - Autism or Autistic spectrum disorder. A more minor label of social communication disorder will be used only for those children who ONLY meet the criteria for that one corner of the triad.

Both of these new labels will be recognised by "the system", so no longer will we get the sort of silly situation where "Aspbergers" means you are not entitled to help from social services, or to access an ASD outreach team or unit, but "High functioning Autism" means you can. I'm all for it as the last thing parents need is this kind of sillyness when trying to access help. Also depending on the individual child, interventions etc often the old labels given at 5 didn't match the adult iykwim. This allows for the fact that it's a spectrum and lots of children seem to slide along it as they grow up in multiple directions (its a developmental delay disorder, not always a full stop iykwim).

It is definately worth chasing a second opinion, imho. The second opinion team didn't have local service budget concerns, or local politics, in the back of their minds. As a result I think they took a more thorough look at my individual child.

thriftychic · 10/09/2012 22:01

thanks , ds2 had the ados and then he was supposed to see a new fella at camhs but he totally messed us around , didnt do anything he said he would and was unreliable in that he didnt return my calls etc etc .
all in all camhs have had info in great detail from me but only seen ds2 for the ados and one other session .
the lady we are seeing now seems so much better and is arranging with the psychologist for a second opinion.
bochead , thanks for that , v interesting

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