Someone help me! ADOS testing and not satisfied w/ diagnoses!

[Ashleetwo]

Someone please help me! I have suspected my DS of having AS high functioning for some time now. He was diagnosed with developmental delay when he was 6 months old and it is a continuing diagnoses. He receives speech and OT and has been for 3 years. His therapists believe he has AS as well as a child psychologist we saw a few years ago. He just had the ADOS testing and passed. The woman testing him spent 20 minutes with him and came to this conclusion. I am beyond frustrated and don't know where to go from here. How long did it take you all to geta dx for your children? What should I do from here? Please help! I live in the US

You need to get the ados test done by someone else, ie get a second opinion.

I don't know how it all works in the US, but in the UK I'd recommend going private.

Diagnosing ASD is not an exact science. Many people on this board have had to get a 2nd opinion in order to get a diagnosis.

Can you research the qualifications of the person that dxed?

The ADOS is primarily a research tool. It has clinical uses but is notoriously poor as a diagnostic tool for high functioning autism and Asperger syndrome. I'd get a second opinion.

Hi my son has the ADOS test at 5 he also passed but was then refered to be assessed on a daily basis by a team of professionals he was diagnosed with ASD (HFA) .

We were told after the test they could see something wasnt right ,and later told he was difficult to diagnose because his speech was so good (sometimes called "little professor).

I would see if he could be watched over a period of time for a more realistic view of what he is like.

We were also told the test wasnt always right as it is only a guide.

Thanks everyone. I agree about the second opinion. And I also agree that he needs to be watched over a length of time to achieve a dx. I am just following my instints here and really feel like my child has AS. I know he would greatly benefit from services you can only get with a dx. For those of you who had to get a second opinion, where do you go to obtain one? What are the different names for testing for autism? I would love to hear other stories of parents who had to push to get a dx. Thanks!

Hi.When Ds was first diagnosed he was given a diagnosis of autistic traits. I knew it was far more than that,but because he likes routine he was a different child at school. Finally I bought a camcorder............He now has the ASD diagnosis;but I think it took about 4 years !!

He has other disabilities and the doctors seemed happy to put his behaviour down to these instead.

Trust your instincts and go for the second (third ?) opinion.

Both my girls were given dx from ados and both classed as high functioning.
However, can you look into the cars scale? Not sure if they only do it after dx. As for ados, ours were carried out by specialist speech therapist who only works with kids with autism.
Here they were dx by a team, rather than by one professional which is good practice IMO.
Keep going, trust yourself you know him best

How expensive is going private? How do I even begin that process? I live in the US

discuss it with your paediatrician? how old is ds? sometimes there are early intervention programs in schools which flag concerns and lead to psych referral?

how good is your insurance?

pebbledasher if ADOS is unreliable for hfa are there other tests available that are considered more reliable?

I'm saving to go private after being refused a 2nd opinion/tertiary assessment on the NHS and it would be helpful to know if there are alternatives worth asking for.

bochead, a good assessment will ideally be made by someone with extensive clinical experience of the range of presentations of ASD. The assessment tools, such as the ADOS, provide a structure to try to rationalise the process so that more people can be trained to look for the right things. However, nothing beats clinical experience which is why it does matter who you see. May I ask why you were refused an NHS specialist assessment? Sometimes it's possible to force the issue. Did you have an assessment centre in mind?

That doesn't sound like my experience of ADOS, which was a videoed session lasting approx 2.5 hours led by a playworker and observed by a pead, and then later reviewed by a SALT attached to the Communications unit, who double marked it with the consultant pead.

Do you know who it was that was with him and dx'd him?

I believe she was a child psychologist specializing I'm autism or so she said. She was brought in by the developmental pediatrician we saw. I can absolutely for certain say that the test lasted about 20 minutes. I was given the dx 10 minutes later with the developmental pediatrician in the room. There was no one else in the room besides myself, her (the psych) and my son. I have great insurance and my pediatrician seems also pretty convinced that my son has autism. As soon as I get the results ( the formal papers) in the mail I will make another appt with our pediatrician to discuss my "uneasiness" of the dx. I am thinking that's probably the best place to start.....right? I am so lost and a bit frustrated! :0/

Ah, sorry I didn't get that you were American - my post probably unhelpful then as that is what ADOS is here in Scotland (and I make that distinction because it may well be different in other parts of the UK!)

i'm a bit confused - i thought they didn't give you the dx you wanted?

what dx did she give?

what did she actually say? the whole 'he passed' and 'was given the dx' thing has confused me no end.

did she say HFA? or what was the dx she gave whilst the developmental paed was there?

usually they take into account an entire history, which i assume was provided by both you and the paed in any case?

there are loads of american sn boards btw, so you should be able to get some more helpful guidance easily enough.

yes, I think you all are right, I should find an american board. Thanks for the help everyone :o)