Finally after all this time DS has his ADOS test tomorrow....im nervous

[bonkerz]

im really worried about how he will do. If he does really well then im obviously a paranoid mum who has been making everything up. If he does badly i will finally have a label for DS which although its what i want its going to be heartbreaking too.
DS has the test at 2pm tomorrow and i have to go for the ADI-R next tuesday then doctor will write the report and DX within 10 days.

[daisy5678]

Good luck!

I think that the ADOS test is a good test, or as good a one as you can get.

And if he doesn't get the dx off it, no it doesn't mean that you have been making everything up. Remember, a school and a PRU have struggled too, and they're experts (esp. the PRU staff, supposedly anyway!)

If he gets the label, it will open doors. That's what you need.

But even without a dx, things are improving for you. People are slowly but surely providing support, and I think your Tribunal case is really strong.

Let us know how it goes.

I'd love to hear how he answers the marriage question!

[bonkerz]

marriage question?????

thanks for the support guys, its so scary but i know oyu are right.

[bonkerz]

i feel so sick! Havent told DS what today is about have just told him we are going to see a lady who is going to ask him some questions. Got to go drop him off for his first respite with a childminder in a minute so i get a few hours off this morning.

[twocutedarlings]

Oh good luck Bonkers!! it about bloody time!!

I so hope you finally get some answers IYKWIM

[TotalChaos]

good luck!

[deeeja]

Good luck for today, Bonkers!

[magso]

Hope things go well!!!

[bonkerz]

well im not sure how things went TBH. Started off with a puzzle test which DS did really quickly , Dr then moved some peices and DS went a bit mad and told her she was bad and had to put the piesces back in right place. Then Dr got out 3 action figures and lots of small accessory toys and asked DS to play with them. He spent 10 minutes sorting the accessories into size order lines and then told the DR he was going to strangle one of the figures. When the Dr tried to get DS invovled in a game he started throwing the toys until she got him to tidy up. Next came a book with no words and Dr asked DS to tell the story, he spent his time going through the book pointing at objects and counting the animals! Next came a series of 6 cards and Dr asked DS to tell the story, he spent 5 mins looking at card but said he didnt understand them so she told him the story and he then had to stand up and tell me the story which he actually did quite well.
Dr then showed DS a picture of a beach with lots of things in picture, DS spent next 5 minutes completely avoiding answering any of Drs questions and being fidgity and awkward.
The wedding question was very funny cos DS said you get married when you hate someone! Dr asked him lots of questions about his emotions but he avoided answering and was coming out with jibberish like when he is happy he feels sad etc, none of it made sense. He said he is stupid and that noone loves him, he isnt lonely cos he doesnt want friends cos everyone tells him to shut up and apparently i dont love him and i call him stupid all the time. (those last few bits really hurt TBH)
After about 45 minutes the Dr said she felt maybe the test which is aimed at 6+ was possibly too hard for DS and has asked me to take him back next week to do the test aimed at under 6s. Im going back on Tuesday for the ADI-R interview which apparently will take between 3 and 4 hours!

SO>>>>can anyone tell me what today has shown?

[daisy5678]

I would say that it shows autism! It sounds v similar to J's and, as you know, he scored nearly full marks. Avoiding the emotions questions, not engaging with the tests, lining things up etc. etc.

He obviously had module 3, as that is the one where the marriage questions etc are. The module 2 is for little kids without fluent speech though, so I can't imagine why they would do that on him. It would be wrong and might skew the results

Yeah, the ADI takes ages.

I think that it sounds like he was himself in the test, so that means that the outcome will be real, which is very good, whether it results in a dx or not, as you know that the outcome was representative of him as he is - not a great or horrific day.

[TotalChaos]

the lining up/wanting things done right sound asdish to me. what a pain that they want him to do another test. and a bit unfortunate too - from what you have said re:academic abilities, it doesn't sound like the 6+ test was too hard language wise.

[bonkerz]

the reason she said she will do the other test was that she felt he didnt have the language skills to answer the questions ALTHOUGh he did go on to tell her about the word horripilation and what it means and she said she couldnt believe it was the same boy she had observed in the classroom doing his maths! She said he is very intelligent but doesnt have the emotional development there at all to be able to cope with the higher test.
Givemesleep, i agree, DS was totally himself today and im glad she saw that, it was really hard to sit still and not say a word when he was not answering questions and being rude etc , do i sound really strange if i say i hope this results in a DX for DS.?

[bonkerz]

the thing is she was asking about how he feels about things and DS doesnt know how to explain his emotions and stuff, she asked him waht it means if she says 'pigs might fly' he said to her that it meant they were pigs with wings! She was also trying to get him to take the lead and ask her questions and to pay attention to her leading questions but he was having none of it and completely blanked her and carried on with what he wanted to talk about!

[misscutandstick]

deffo sounds ASDish to me too! it sounds like your DS was being himself - and not too distracted by strange surroundings too.

Dont mean to Hijack - but when DS had these tests, i remember him being asked "what are the advantages of a paperback book over a hardback book?" he answered... "when it falls off a shelf and hits you, it wont hurt so much!" and he didnt have a clue as to why we put stamps on letters, or why anyone would need to be told that they need their socks up!

[Buckets]

LOL about marriage - to quote the late Mike Reid "I might as well have bought a house for someone I hate"

Bonkerz, no it's not strange to want the DX, I was terrified that my DS would suddenly start acting 'normal' and even after the ADI-R DH and I agreed he didn't sound that bad at all. Got DX of AS the next day! Big mix of emotions, many will surprise you but over all a DX will help you visualise a brighter future for your family.

Tip for the ADI-R is to dig out anything you've ever written down about him (inc old MN threads) and also try and brainstorm any funny phrases, anecdotes from when he was little, and milestones in his blue/red health book.

[daisy5678]

I don't get it. The whole point is that he should be being compared to other children his age. If she does the Module 2, it's silly stuff like playing with bubbles. It's not that he doesn't have the language skills - he doesn't have the emotional skills - and that's surely part of the whole point of the test!

J is bright, like your son, but couldn't do the emotions questions either. Not because he didn't undrstand the words, but because he couldn't understand the concepts!

Seems bizarre to do the other test, but go with it unless it throws up something you don't agree with. At least they're being thorough.

I get what you mean about the dx. Totally. Didn't want it unless he needed it and fitted it. He did, so I wanted it.

[twocutedarlings]

Pleased it all went well for you bonkers It certainly sounds like your finally getting somwhere.

Do you know i dont think my DD was Dxd using this, i remember everything quite well but non of what you are saying sounds familiar .

When we had our assesment the was the consultand nero pead, salt and clinical psyc all in the same room. They asks us lots of questions about her development from birth to present (she was 4 almost 5 at the time) pead then sat and played with DD while we chatted with salt and psyc. They then sent us out for about 30 mins then called us back in, told us that they thought that DD had AS and went on to do an IQ test about a week later a week or 2 after that they dxd her with AS.

I alway thought that is was the ADOS that we did, but i dont think it could have been. It was far more straight forward than this.

[Buckets]

My DS(3) had the ADOS for littlies, it was like a silent clown show, the 2 ladies following him about waving toys and him blanking them if it was something he found dull. He wouldn't talk until they got out some different shaped biscuits and he told them what shapes he wanted. Then suddenly he bursts out "That's not right, that's a diamond!" They jumped out of their skins LOL.

[nikos]

What do they do in the ADOS for under 6?

[daisy5678]

MODULE TWO: for those who use phrase speech but who are not verbally fluent.

Construction task
Make-believe play
Joint interactive play
Conversation
Response to joint attention
Demonstration task
Description of picture
Looking at a book
Free play
Response to name
Birthday party
Snack
Anticipation of a routine with objects
Bubble play

MODULE THREE: for verbally fluent children

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

That's what I don't get. He is clearly verbally fluent, so Module 2 seems very inapproriate.

The ADOS website says: "Sometimes a child with very high functioning autism can miss autism criteria on the ADOS, just because it is a short observation. When this happens, the examiner is usually quite aware of it since these children will almost always have some high codings and scores, just not enough of them to reach the criterion for autism. So it is not that the examiner did not see any autism, but that the particular thresholds for the codes were not met.
The situation can also occur when a child's developmental skills fall "between" two modules. A user may decide to give the lower one, even though the child has enough language to do the next one up, out of concern that the social questions might be difficult. This can cause kids to miss threshold--for example, reach the criteria for ASD but not autism, or meet criteria in one domain, but not another. Even so, such a child wouldn't "not look autistic."

In all such cases, an examiner must use clinical judgment. Apart from the ADOS scores, did the child show any signs of autism during the session? How does this fit with the specific abnormalities another mental health team member may be reporting from the Autism Diagnostic Interview-Revised (ADI-R) for example (which is retrospective and relies completely on the parents' report). In cases where parents', teachers' or other clinicians' reports seem to disagree with observations made during an ADOS session the examiner need to find out: are people are actually seeing the same things but interpreting them differently; is it that the child's behavior changed radically; or are other parties reporting things that really were not present during your session?
This is also the place to consider a central caveat for all testing: no clinical decision should rest on the results of a single test score. A diagnosis, whether it is medical or school program based, is the informed judgment of a skilled and qualified professional, based on all the accumulated evidence from multiple sources.

[daisy5678]

www.childbrain.com/pddassess.html is interesting.

[bonkerz]

Thanks givemesleep. obviously my DS failed miserably at the points below in module 3

Reporting a non-routine event/conversation
Emotions
Social difficulties/annoyance
Break
Friends/loneliness/marriage
Creating a story
I agree i thought this was the point of the test! Will mention it to the Dr when i see her on Tuesday....

Now any pointers for the ADI-R please?

[daisy5678]

Just be honest, as always. A lot of it is very retrospective e.g. first words, did he point etc. so it's worth digging out baby books or old home videos if you have them to remind yourself about ages/ milestones.

Good luck.

I wouldn't make your research too obvious to the doctor on Tuesday. Let them do what they want to do so it doesn't look like you're chasing a dx, because some of them seem to get shirty when they think you're trying to skew things - professional pride or something, I guess. Maybe phrase it like a question instead, about why she thinks that it's appropriate to go for a test for younger children.

Good luck Bonkerz...hopefully answers are coming for you soon!

[bonkerz]

Well DS actually physically attacked DSD today. She told him she didnt want to play his game and normally he gets angry and shouts but today he physically flew at her. He pushed her and went to grab her face, thankfully i was right there and managed to get him before he got at her face i flung him across the room and he charged back at her spitting in her face that she was an idiot. I grabbed him and somehow got him out into our hall and closed the door on him so i could check DSD. She was shaken but ok, What followed was a shouting match for DS to get in his room where he comletely trashed the place, his telly got puched on floor and his bed is broken beyond repair. It took over an hour for him to be calm enough to talk and even then he completely denied doing anything to DSD. Nearly 2 hours after the incident he had calmed enough to accept that when he was angry he did actually hurt DSD and he did apologise and said sorry. It scared the hell out of me TBH, I have seen him in action but he has always at home attacked furniture/toys/pillows etc never DSD or another person. How the hell do i protect DSD and DD? He had first day at play scheme today where he had 1-1 with a man called Adam and whilst in his rage he was screaming that he hated Adam cos he was too black! What do i say to that? When i picked him up he said he had had a great day and Adam was nice, i have explained that saying someone is Black might make the person feel sad and that it could be rude sometimes so it is best not to say it but i know its just his observation and nothing racist but im terrified by this! He is now in his messy room on his mattress with DSD absolutely shattered and watching a DVD.

[daisy5678]

So sorry your day was rubbish. It's so hard when they attack people rather than things.

As for the racism thing, been there (see
www.mumsnet.com/Talk?topicid=1373&threadid=524318#10661860 )

and the ohly thing that seems to have worked is doing the 'don't say it' thing. No luck yet with trying to change his view, but at least it's getting ingrained that you just don't say it!

Good luck for tomorrow.