ADOS

[debs40]

DS has the ADOS next week. Can those of you who have had this with their DCs tell me whether the people administering the tests had any prior knowledge of their child?

We have been seing one psychologist at the local CAMHS (DS saw her once and she did a useless school observation) but she was so dreadful we asked for someone else to deal with the case. The two people doing it have never met DS.

The original ADOS booking for J was supposed to be the psych who'd originally dx'd ADHD but missed the autism so I was a bit , but it got cancelled due to illness, so the main 2 people who did the re-scheduled one didn't know J at all. His new psych did watch as well but didn't score it, just discussed the results.

I would have said it'd be better to keep to people who don't know the child, tbh.

DS1's ADOS was done by a SALT who had seen DS1 3 times before but he hadn't seen her for around 8 months when it was done. The other person doing the ADOS was an OT and DS1 hadn't met her before but her certainly took a shine to her. TBH DS1 had always been a bit passively hostile around the SALT on the first 2 visits though warmed to her on the 3rd but that may have been because he took to the other SALT she brought with her.

I do wonder if it would have been better had the SALT he met not done the ADOS as his dislike of her(!) may have had a bearing on how he engaged with her. Though overall I agreed with the results so its a moot point now.

I do not know the answers to your questions as my ds is still waiting for his appointment letter for the Ados to come through.

But the way i see it, i'd rather the people who are doing it not to have had any previous involvement with DS. That way they wouldn't have any pre-conceived ideas about him. More of a blank canvas if you like.

In any case good luck with everything, and let us know how it went and details of what they did,... i'm also looking for info about how the ados is performed.

Thanks. I can see that it can go both ways. If he knows someone and feels comfortable, it might undermine how hard he finds things with people he doesn't know. If he doesn't know them and doesn't 'click' with them, he's likely to be especially Aspie!

I will let you know how it goes. It feels weird that he is actually going to have the assessments after all the arguing about waiting lists for the last year.

Did you find the tests a realistic reflection of your children's abilities and problem areas?

Yes, and uncovered things I'd been in denial not noticed before.

Yes, it was a true reflection. The focus was on engaging him first then assessing his responses rather than "put the spoon on the plate" type tasks. e.g. there was toy he'd taken a shine to in the waiting room so they used that toy in the testing bit, not just the toys and games they had already set aside.

Thanks. That sounds promising and interesting!

my son did the ADOS test and it came back not ASD but he was then referred for longer assessments and he was then diagnosed with ASD ,so i dont go much on these tests .
My sons pyschiatrist told us that the test didnt pick up things with my son because his speech was so good.

Thanks logi. What other assessments did you do? It does seem to me that you can read what you want to in these tests so if it scores a negative and the testers feel that goes against their initial assumptions,they will test further or ignore the negative score but equally if it proves a positive and a negative was expected, that is explained away.

I'm starting to think the whole thing is hokum pokum!

They do play assessments if ASD is not picked up by the ADOS Debs as the ADOS is not good at picking up the more subtle signs.

They've just said it's the ADOS/ADI here wasuup....nothing else.

debs, imo it IS hokem pokem. You just go along with the bits that are going to make life easier for your ds, and argue the toss with the bits that are going to make life harder and don't leave until you have got the key to unlock the doors YOU want dx you feel is right.

See, in my case it did pick up the subtleties in J that everyone, inclding me, had missed. I wonder if it's down to how experienced the testers are. At the end of the day, there's a set, fixed set of criteria for autism dx and that should be the main thing used to make the dx. ADOS etc. should just be a way of firming up that dx i.e. checking that the symptoms reported can be seen in a more objective environment too.

Apparently the ADOS is not infallible so they use play assessments as well at our CAMHs. What I was told anyway. CAMHs are due to do a 2nd school assessment for our son then we get an ADOS assessment for him and if that doesn't score high enough for a diagnosis then they will use their professional opinion after several play assessments have been completed. Our CAMHs team seem pretty on the ball and experienced.

Same as givemevodka, DS1's ADOS did pick up on the subtleties, the cons Paed. said a few years ago they would have put DS1 on a wait and see and wouldn't have been able to formally dx until he was around 7, as in his experience that was the usual age the milder affected child would stand out against typical peers. (DS1 was a litte over 3 at the time)

My undestanding of the ADOS is it is a play based-assesment which has a basic framework, but how it is performed will be down to the testers so quite reasonable for there to be inconclusive or incorrect results. DS1's dx was not solely based on the ADOS, it did however give more depth to the dx process.

Thanks. Wasuup, that does sound thorough.

Notfromaroundhere, I think you are right. The test and the whole dx process really does depend on the testers and their experience. I think these tests are used to 'standardise' the process and make it look 'objective' and scientific. But they all come down to perception, whether that is the testers or the parents.

The ADI, for example, is a long interview process with parents and really it is open to people to big that up as much as they want. We did the GARS at BIBIC and deliberately kept responses very low key but still got a 'likely AS' result. We both said to each other though that it would be very easy to over egg the pudding.

The ADI seems particularly pointless to me because of that. Parents tell you a whole list of things about the child which suggest ASD, so you put them on a long waiting list to do an ADI in which they're asked to answer a whole long list of questions which may confirm ASD. It's scientific-ish at best .

I guess the 'sciencey' bit of the ADOS is that testers are supposed to act in exactly the same way with each child, so it's a standardised test with standardised activities. Each aspect is scored 0 (neurotypical response) to 2/3 (autistic/ unusual response).

e.g. the tester may say 'I went on holiday this year' and a neurotypical child would probably ask 'where did you go?'. Whereas a more unusual response would be to ignore the question or just to say 'I went on holiday this year'. That's something they can then score, and I guess it's more objective than just doing less structured stuff. I thought it was a good test and highlighted the key issues that J has.

"a neurotypical child would probably ask 'where did you go?'."

don't you mean "I went on holiday too. I went to X"?

or maybe I mix with the wrong children....

I dunno. Just the example we were given.

DS2 had an ADOS at the end of his DX. It was ran by the same 3 people who had been there through the whole of the 6 months it took, namely his paed, EP and SALT. They each took it in turn to do certain things with him and the others took notes.

He knew the EP and SALT more than the paed, as they had done a few home visits and also did a few nursery observations.

hth

Hi debs40 after my son did the ADOS test and it was unsuccessful in diagnosing ASD ,the nurse said she could see something wasnt right and he was refered to a unit where he was watched over longer periods of time and then diagnosed.
he attended the unit for 5-6 months to help with some of the problems he had,he went 4 days a week for 5 hours a day.
Although these tests work for some children my sons behaviour can be ok but then seem to change dramatically ,we have 2 letters from recent paediatrict app. regarding my son...
one letter
says my son was spitting,screaming constantly trying to leave shouting at the doc saying she cut his head open whilst measuring it.
second letter
says although my son needed reassurance he was settled and happy to talk.
It was like 2 different children i dont know if other parents find their children are like this.

Yes, my son can be happy and giggly if he is with us or with people who make the effort to engage him but if he can't work out the measure of people, he just shuts down or gets very worked up.

I'm feeling really nervous about the tests now. We've waited so long and I know they're not the be all and end all but I just feel really worried about inviting all this intrusion into his life

You are doing your best as his Parent. You have concerns and you are getting them checked out. So just see what happens in the knowledge that you are doing your best. I know its a worrying time but you have waited a long time "to officially know" one way or another. It will be OK whatever the result maybe.

DS1 had never met the people that did the test before. The lady that did the test was fantastic though, really good at getting him to engage. I was genuinely shocked at the result. (HFA) to the extent that I asked for further tests, but on reflection I really do see what they meant. The test is a good one, as standardised tests go IMO.

Thanks wasuup, that is a good way to look at it. You are right. I have just presented concerns, they've spent a year and a half checking them out and no one has said 'don't be daft you neurotic woman!' (not yet anyway!).

Thanks bigweehag that sounds reassuring.