ADOS test - what happens?

[teachermum1]

Hi all, newish here. My son was dx with ADHD 2 years ago (he is 6) but our new psychiatrist at CAMHS thinks he also has high functioning autism. She did an ASQ questionnaire with me and he scored really highly, but are now waiting for an ADOS test. I have googled it and read a lot about people's views and a brief description of the tasks, but wondered if anyone could provide a detailed description of what happened with their child and the feedback they got. I'm worried that he might not score because he won't really talk to anyone (will play with the lightswitches and doors instead!)I would really appreciate it - thanks in advance. I got some detail on another forum but just wondering if any of you have experiences you wouldn't mind sharing. x

[Karen A]

Hi teachermum.Welcome to the forum.

When Ben had his ADOS a secialist SALT came to our home with a bag full of different small items Eg hair brush,small people etc.She involved Ben in various Semi-Structured activities such as encouraging him to demonstrate what he would do with the props.Professionals can only administer the ADOS after specific training.The ADOS is designed so that a child with ASD is more likely to use the activities in specific ways.In Ben's case the SALT was able to give me feedback on the day according to what she had found and was recomending.

 

The Specialists that administer the test will have come across lots of children who do not talk and who fiddle with things so I am sure they will know how to score the ADOS in that situation.Karen.

[teachermum1]

Thanks, Karen, for the welcome and for taking the time to reply!

 

I guess they will be experienced with children like J. What will they score him on?

[Karen A]

Thanks, Karen, for the welcome and for taking the time to reply!

 

I guess they will be experienced with children like J. What will they score him on?

 

 

 

I do not profess to be an expert and just picked up some of the things the SALT was looking for-eye contact,use of props designed to draw out imaginery play,ability to come up with an original story ending and she had a sparkly spinning thing that is the sort of thing that children with ASD/ AS are likely to be especially interested in.

 

As Ben has advanced speach and language I don't know whether the props are adapted for children with less speach.I hope some others may provide a bit more info for you if their experiences are different.Karen.

[Clare63]

Hi teachermum,

Welcome to the forum.

Not sure if its the same test, but CAMHS did a test on my son using different props they told a little story and moved the things about then got my son to answer their questions by pointing to or moving the props about, he does not talk much either.

Try not to worry, as Karen says they are used to children not talking or fiddling with things, my son usually sits pulling his hair over his eyes and stares into his lap.

Good luck and keep us posted with how you get along.

<'> <'> <'>

Clare x x x

[krystaltps]

Hi, as far as I know there are four levels of test and they can vary quite a lot. The level is decided upon based on the child's language skills/level (after assessment by the SALT). ADOS 1 is for the least developed language and ADOS 4 for the highest. C had the ADOS 3, as although he was relatively young, his language and understanding of language was very well developed.

I'm afraid I can't tell you very much about C's test, as with ADOS 3 and 4 they prefer the parent not to be in the room. The report referred to eye contact; turn-taking; ability to relate familiar and unfamiliar events (with children on the spectrum being expected to have greater ability to relate the familiar); use of and/or response to humour; ability to fabricate stories; use of non-verbal communication; presence of any idiosyncratic speech. But bear in mind that C's test was geared to the very communicative.

We got the results about 2 weeks later, but this varies greatly depending on LA - we are on an island, therefore C's test was performed by a team of 2 paeds and a SALT who have been trained in how to conduct the test... it was video-taped and sent off to the centre for review. We received the report about 1 week after hearing the result.

The ADOS test is not reviewed independently - any reports from parents, school, ed psych, SALT are all taken into account as well, so that a broader picture is obtained. However, from Cs experience, I would say that the ADOS is the deciding factor. All of this is reviewed in the written report.

I remember feeling stressed in the run up to it - worried that C would be having a super good day on the day of the test and that it wouldn't pick up on his difficulties. But the test is designed specifically to to do just that. One of the paeds said to me when giving the results that on reports alone they would have had doubts, but the test picked up all the problem areas that C tries to hide and has developed coping strategies for.

Hope some of this helps... good luck with the test

Edited November 1, 2007 by krystaltps

[teachermum1]

J is like 2 different children. Most of the time, he's hyper and uncommunicative, and obsessions with switches and doors etc. mean that he doesn't stop long enough to talk properly or to have a conversation. So first I worried that he wouldn't even settle to taking part in the test.

 

But he's on medication for he ADHD now (2 years of saying no, but he was so violent in school that they were talking about exclusion, so we got to last resort stage which, for us, was always going to be medication if the worst came to the worst). Now he's on that, he's much calmer and still doesn't really look at you, but can access a conversation. So should I medicate him that day, or see him as he normally is?

 

The psychiatrist said something funny last week. She said that because we've socialised him so well (like replying to people and parroting how are you if they ask how are you) and because his language is so good (has a massive memory store of adult phrases e.g. 'what was it like moving house, J?' 'oh...it was exhausting...dreadful...never again!' - direct copy from what he heard me say about it!) she's worried he won't get the autistic score from the ADOS, and she said she couldn't diagnose without it, even though the ASQ score/ information showed clear autism.

 

Now, I've never even suspected autism until she brought it up in the summer, but all the reading I've done made me realise that she is right, and the ADHD has perhaps masked some of the autistic bits, if that makes sense. So now I want the diagnosis because then he can access more specialist help. I mean, even with a full-time 1-to-1 statement, school are finding it hard, so I know they'd love the extra help, and social services won't offer me any help unless the gets the autism diagnosis (I want them to arrange anger management and to help fund his after-school care (1 hour each night) because he can't access the normal after school club because he is so dangerous).

 

Social services said ADHD is not a disability on its own, only with the autism! The SS guy said 'cos autism is really severe and ADHD is not!'

 

So I don't want J diagnosed with autism if he isn't autistic, but I agree that he is. So now I want the diagnosis and am scared the ADOS won't show it, as the psych said the scoring is harsh.

 

Thanks for all the advice anyway...still waiting for the appointment and any more ideas welcome!

[Karen A]

Hi again teachermum.

 

Ben was Dx with Social Communication Difficulties [some AS but professionals could not agree re Dx].He is similar to J in that he has excellent vocabulary.

Camhs have said that at a future time we and the professionals could request a 3Di assessment.Having looked for info it appears that the 3Di is a newer tool than the ADOS and is used in some areas where there is difficulty in making a clear Dx.If you find that the ADOS does not score high enough for a clear Dx then you could ask the psych if the 3Di is available within your area.

If you find that there is nobody who can administer the 3Di then it may be possible to ask the Psych for a referal to the regional centre to request another opinion.If the psych thinks the information clearly shows Autism she is more likely to support referal.

 

I know how frustrating it is having to expend time and energy to obtain a label-so people can tick boxes in order to provide support or funding. I wish I had an answer to how to overcome the problem alas I am still looking.

We are now facing the possibility of having to fight to prevent withdrawl of OT because the OT has picked up that some people think Ben may have AS and she supports children with DCD......Karen.

[Karen A]

J is like 2 different children. Most of the time, he's hyper and uncommunicative, and obsessions with switches and doors etc. mean that he doesn't stop long enough to talk properly or to have a conversation. So first I worried that he wouldn't even settle to taking part in the test.

 

But he's on medication for he ADHD now (2 years of saying no, but he was so violent in school that they were talking about exclusion, so we got to last resort stage which, for us, was always going to be medication if the worst came to the worst). Now he's on that, he's much calmer and still doesn't really look at you, but can access a conversation. So should I medicate him that day, or see him as he normally is?

 

 

 

It is worth phoning the psych to ask whether to give medication on the day.I am sure she will be able to tell you what is the best option.Karen.

[teachermum1]

Karen, you are so helpful - thank you. The 3di thing sounds like a possible back up then. Sorry to hear about your problems. Why can't it all just be easy???

[Karen A]

I don't know.Money has a lot to do with it I think. Karen.

[teachermum1]

Yeah...as ever.