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Over the ADOS scoring threshold but not ASD - anyone else had this?

(23 Posts)
Surrealistrhinoceros Tue 04-Dec-12 15:45:36

Ds 6 had his ADOS assessment last week. Haven't had formal feedback as yet but the informal answer is that he scores above the threshold but they don't think he has ASD due to all their other observations of him. They think instead that due to his very difficult early start his social development is around two years behind, but they hope to see that gap close as he moves up junior school.

I'm okay with this, but wondered if anyone else had had a similar experience? My main anxiety is to document that he has ASD type difficulties NOW and needs appropriate support. I don't want anyone suggesting that he hasn't got ASD and therefore we can have normal age appropriate expectations of his behaviour and social skills. To be fair CAMhS aren't sayig that and nor are school, but I don't want to be totally dependent on the goodwill of those who informally 'get it' in case they change.

Many thanks!

WilsonFrickett Tue 04-Dec-12 16:58:53

I don't quite know what to say to that Rhino as all the indications I've ever had from HCP is that the ADOS is what the ADOS is - it only measures for ASD and if you're over the threshold it has to be ASD. But that could skewed understanding from me, or them.

Are they proposing any sort of DX at all? We have a dx of social communication disorder or delay, which has been enough for us to get some support. Totally get what you're saying about being dependent on goodwill, it's not a good place to be these days. And if he doesn't get the support, the gap won't close as fast as they'd expect.

Can you push for wording similar to above, eg disorder or delay, which kind of leaves things open?

mariammama Tue 04-Dec-12 20:54:08

So you need them to write down some sort of diagnosis, even a wooly one 'Possible asd' 'social communication difficulties' or whatever, with a detailed treatment plan, a mechanism to get help if things deteriorate, and a pre-set formal review date using a proper validated tool (maybe ADOS again?).

Surrealistrhinoceros Wed 05-Dec-12 12:50:45

Thanks! It's a bit weird, isn't it? Am assuming that the ADOS score is a 'necessary but not sufficient' type thing.

Current dx if anything is 'attachment difficulties' and I am okay with that as part of the issue - but that particular term feels like a very woolly phrase that doesn't acknowledge that at this moment, the primary way in which DS very difficult start is presenting itself is through substantial social delay comparable to a child with ASD. Otherwise it seems to put the spotlight on his relationship with us which right here, right now I think everyone agrees is not the major issue. In fact they all keep assuring us how good it is smile

magso Wed 05-Dec-12 14:51:53

I agree that getting something written down so that everyone (that needs to know) supporting your son understands his needs and social communication and emotional delays would be helpful. We had a similar difficulty in diagnosis for ds and the lack of a diagnosis caused all sorts of problems with school and clubs. He never had an ADOS but was refused referral for ASD assessment because of his difficult early history. He scorred well over the threshold on the tests for dyspraxia but did not get a dx as the OT knew he was too complex. So other children at school got extra dyspraxia help but ds could not.Ditto for lots of other skills. He now has a Dx of autism with LD but only got that at nearly 8. The delay in Dx was harmful especially at school because he was expected to be NT and the understanding was not there. Good luck

sweetteamum Wed 05-Dec-12 15:01:16

I was also under the impression that the ADOS ''trumped'' any doubts people had, with regards to being ASD . . It's the only reason we didn't get a dx last week as part of the multi-disciplinary approach. Because all reports were not there or people did not all agree. I expect a dx to come from an ADOS and will be annoyed if she goes over the threshold, yet still doesn't get one.

Good luck

Surrealistrhinoceros Wed 05-Dec-12 15:04:53

That's interesting magso. Did they also give your lad the 'attachment difficulties' label, and was it hard for people to understand what that meant in terms of social skills etc?

I can understand the theory that because of DS rotten early start, his brain hasn't wired up as it should have done, so he is playing a massive game of catch up and has very similar support needs to a kid with HfA - but I don't know if anyone else outside of the family and his fantastic school will.

magso Wed 05-Dec-12 21:25:49

He did not get an official AD Dx but it was presumed to be the cause of his difficulties (AD and ASD can look very similar in young children). I think paediatricians and all the medical world tend to procrastinate rather than give a wrong diagnosis when a simple statement of support needs would be far better than nothing. School most certainly did not understand, however well intentioned. I am glad your school is understanding - that is worth a lot. Has ds got a statement?

ilikemysleep Wed 05-Dec-12 23:27:16

Hi

No ADOS isn't either necessary or sufficient to diagnose. It is one part of the assessment only. It is slightly unusual for kids to score and not get a diagnosis, but it'd be rarer the other way - for them not to score and still get a diagnosis IYSWIM. That's because kids can fail to demonstrate competence socially in the ADOs for lots of reasons that aren't autism - foir instance, a kid who is very very shy might score, but then would be seen to have good social understanding in an obsrevation in school with familiar peers. Or a kid who is uncooperative (like a stroppy adolescent who doesn't want to be there and answers with head averted in monosyllables...not autistic, but would score!)

Sorry that isn't very helpful in your situation but just to clarify the status of the ados. Autism as you know is a 'judgement call' based on a range of evidence and the ADOS is only one part of that.

ilikemysleep Wed 05-Dec-12 23:29:06

Adding - I have known kids not to score and still get a diagnosis - usualy older teens or girls who are 'imitating' good social skills and so don'ty score on the ADOS scoring chart, but to the examiner it still 'feels; not quite right - too learned or slightly uncomfortable - and so the ADOS score gets ignored.

justaboutchilledout Thu 06-Dec-12 04:38:24

Message withdrawn at poster's request.

fightingthela Thu 06-Dec-12 06:37:12

Agree with justa. You're left in limbo now as with no dx support will not be very forthcoming. When ds had Ados we were told there was definitely no ASD andgiven a dx of 'behavioural difficulties'. 2 years later he has a dx of HFA and the damage caused by the late dx and not getting any support for years has really affected him.

sweetteamum Thu 06-Dec-12 07:57:38

Ilikemysleep, could I ask you if you were part of a multi disciplinary team, where the present reports suggested social communication difficulties, as well as other obvious factors, where the community paed, lasc and camhs all think aspergers ((and said theres enough info to diagnose)) and the only one to disagree was an EP who met child for 40 minutes and who did not present a report for the meeting. Why is the ados so important in this case - it's the only reason I thought it trumped everything and it makes me wonder if more people actually end up with ados than needs to.

I know you're an EP and seem a very reputable one at that.

ilikemysleep Thu 06-Dec-12 08:04:07

Is the ed psych part of that team? If so his voice will be considered as part of the evidence but the ados will probably be theclincher.
If he is just the allocated ep from the LA, he will carry less weight.

sweetteamum Thu 06-Dec-12 09:43:29

He's been allocated by the LA, but he's been giving his colleague (who is part of the team) his thoughts. DD never had a chance of a dx of either of those as one of them said in June "oh i'll put her on the pathway, but doubt she'll get a dx" and the other made it clear a few weeks ago that he didn't think dd was even on the spectrum. Basically the medical and specialist teachers have seen it and the educational people haven't. therefore they're saying it's not there.

CurrerBell Thu 06-Dec-12 10:14:32

Rhino, I remember you from my thread. I thought what you said about your DS's diagnosis 'like ASD but not ASD' sounded very strange and unhelpful. Surely if he is presenting with ASD traits he needs the appropriate support now? It sounds like the idea of 'attachment difficulties' is just clouding the issue.

I'm afraid I can't help on the ADOS as that wasn't part of my DS's diagnosis. However 'attachment difficulties' was initially suggested to us as well, until we were observed together and that was found not to be the case. This held up the process of getting the right help in place, and we spent his first year of school with a lot of uncertainty. What finally helped DS get a diagnosis was when he was seen by a speech and language therapist, who recognised ASD. On the basis of her findings, DH and I did the 3di computerised assessment, which came back with a diagnosis. School are very relieved, as they can now get the support in place. It sounds like you're in a different system to us, but if I were you I would really push to get a working diagnosis, at the very least, to access the right help.

ilikemysleep Thu 06-Dec-12 18:28:41

Sweet tea... Ultimately it is a medical diagnosis. Consideration will be given to educational points of view, but in the end the medics have the power to overrule the educational opinions, and the educationalists (in the question of diagnosis) don't have the power to overrule the medics.

Handywoman Thu 06-Dec-12 19:17:26

Currer what's the 3di computerised assessment? Not heard of that one. Quickly Googled is, is it only available at GOSH?

thanks,
HW x

CurrerBell Thu 06-Dec-12 20:38:14

This is the 3Di. It's a computerised survey conducted by a paediatrician with the parents. We did it in the RUH Bath, but I don't know where else it's available. It was the basis of my DS's diagnosis (took around two hours).

NoPinkPlease Fri 07-Dec-12 00:23:13

Ds has just had ADOS and 3di. 3di said no, ADOS said yes. Edpsych thinks not ASD but attachment and hearing loss related development issues. So ADOS trumped for us too. Tbh, I've got no idea now... Only time will tell hmm

ilikemysleep Fri 07-Dec-12 11:20:48

No pink... Hearing loss can cause attachment issues, esp fluctuating loss. One of my kids had severe glue ear we picked up on late, he had very anxious attachment and still does, because, in his mind, I often ignored him (he couldn't hear if I was elsewhere in the house or even had mt back turned. His loss was 60 db in each ear so pretty bad). He became anxious, rigid and controlling. Attachment and autism do unfortunately share features, and attachment difficulties are not always the 'fault' of a deliberately neglectful parent, as I know well!

Surrealistrhinoceros Sat 15-Dec-12 11:08:44

Thank you all for everything. Sorry to
come back late to update this thread because the replies were really helpful. I think I now understand much better where the replies were coming from.

We now have an excellent report saying why he doesn't have ASD - am pushing for another very short one to say what he does have (probably attachment issues!) and what effect it has on his social development.

Nopinkplease (love your username, do you also have a Dd?) I replied to your thread about attachment disorder. Let me know if I can help any further! confused

melinacullum Tue 16-Apr-13 22:50:14

ilikemysleep could I ask why my 5 year old had ados test, scored 16, went for 'the dx' chat, pead went through all the speil, at the more severe end of spectrum yadda yadda yadda, have some leaflets and books etc....
When report came out, pead had suspended dx because ST said not to dx yet, and then ST discharged him???

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