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Private diagnosis - Ados(21 Posts)
A number of my friends have used the same company for a private ASD diagnosis.
I have read all of their reports, three in total. Imo the company have made the same mistake on all three but Im checking in case its changed.
I thought that the scores from the Communication section & Interaction section were added and then there is a cut off for ASD and a cut off for Autism slightly higher.
I thought that unusual behaviour and stereotyped and repetitive behaviour is scored but then, this isnt actually added to the score.
For example one states, 1 from communication 4 from Interaction and. 4 from stereotyped behaviour total score of 9 which is over the Cut off for ASD.
I understand the that ADOS is used alongside other tools and if it said that it would be fine, but it specifically says that they have met the threshold.
Im hoping Im wrong but ive searched online and everything seems to say Im right. The reason Im concerned is that these parents have spent a lot of money and are recommending this company to other parents.
...there is a cut off for ASD and a cut off for Autism slightly higher
My DS was only just diagnosed, so apologies if this is a very silly question but aren't ASD and Autism the same thing? If not, what is the difference between them? I know that ASD is an umbrella term for the different types of autism.
I thought although you have a total score there needed to be a minimum in each area?
Admittedly I'm not sure myself as although my ds has had his ADOS I am still waiting for his results.
I didn't get the scores for ds but was told he was borderline on ADOS and he was diagnosed based on the multi-disciplinary assessments he had and clinical judgement. ADOS is popular but it's not the best diagnostic tool, and should never be used alone to diagnose, only as part of a full assessment. There's a strong male bias in ADOS as well as being based on an old conceptualisation of autism/spectrum.
Are you suggesting those children shouldn't have got a diagnosis?
Yes there is a minimum needed from communication and a minimum from Interaction. in addition to the total score needing to be higher than the cut off.
Yes autism is ASD, my understanding is just that the higher score giving an Autism dx over ASD just means that mire traits were displayed.
Polter, no not at all. Im not in anyway qualified to judge that at all.
I'm just concerned that if they've made such an obvious error then the rest of the reports could be called into question. I completely agree that the ADOS should never be used alone as a diagnostic tool and anyway lots of children still get diagnosed if they dont meet the threshold on ADOS but the reports dont say that. They say using the ADOS they did. If that makes sense (sorry got banging head)
One of the parents has already been through NHS dx process and the child wasnt diagnosed, they and another parent who went private because of the waiting list are going through the complaints process, this is why im worried as, if I noticed then a professional familiar with ADOS will also notice. Another parent who also hasnt recieved a dx is also going to use this company.
I understood that the stereotyped behaviour was measured but not counted, so on the above scores would make 5 and therefore under the ASD threshold which is usually 7 or 8 and Autism 12 and over. There was a brilliantly informative post on ADOS scoring years ago when my DS was due it, I'll try and find it.
That's a bit odd then, yes. Are they diagnosing on ADOS alone then?
From my experience, many children who don't get diagnosed through NHS but go on to get diagnosed privately/second opinion are the ones who are more subtle and less likely to have their autism recognised by a tool like ADOS.
I'd love to know who the company is, if you don't want to say here would you mind PMing? It would be interesting to see what they say about their assessments and who carries them out,
On dds ados results, she scored a 7 for social affect (assume this is social communication) and a 2 for restrictive and repetitive behaviours. A total of 9, above the cutoff of 7. She has a diagnosis of Autism. Autism and ASD used interchangeably through out the report.
Sorry Polter im not explaining very well. No they arent using ADOS alone, they are using DISCO as well. So the diagnosis would be give from information from both. However as well as a summary at the end, the summing up of the ADOS clearly adds all the scores up together and states 9 is over the cut off when actually they only scored 5 from the parts that are counted in the cut off.
They have counted all those scores together in all three reports.
If they had wrote, the threshold for ADOS wasnt met but using all other evidence blah blah then a dx is given, that would be fine, but that isnt what they've wrote.
I have read that excellent post about the scoring but I just wanted to check if it had changed since to make sense of it.
Do you mind me asking why you're so interested? Do you think they've misdiagnosed?
The assessments were carried out by a SALT & Pyschologist.
D'oh I completely missed you needed recent scoring! It seems it was revised in 2012 to the ADOS-2 - is asking the parents to ask the provider for more scoring information an option?
I dont think theyve been misdiagnosed.
I think im just bothered because I wouldn't expect a company working in this field to be making such an obvious mistake. Im no expert but I knew ther was something off when I read the first and second reports it was only when I read the third it clicked. Really the first and second it didnt affect the dx because they did meet the cut off anyway it just gave them a higher score of 19 & 23.
It would be fine and I would just keep out of it, because it doesnt make any difference to me, im just feeling awkward when we meet up and other parents are talking about using them. I was convincing myself I was wrong and that the scoring has changed but thought id check on here.
The reason I have read all the reports, is that Ive been helping them with EHCP requests.
Ive asked on here because I didnt want to raise it with them if Im completely wrong and the scoring has changed.
Is it clear whether it was the newer ADOS-2 or not? I can understand not wanting to cause undue worry, but if you framed that some areas still use old ADOS with a different scoring system and not wanting to waste time with the LA disputing them when there's more important issues to deal with, may be a way round it?
No, the assessment results are correct.
On ADOS-2, the SA and RRB is added together to inform the 'total score.' The cut off for diagnosis depends on which module of the ADOS is used (there are four modules).
There are other behaviours which may be observed but do not count towards the algorithm.
As a user of ADOS and DISCO myself, I think it's very unlikely that two separate clinicians who are both appropriately trained and qualified have got the scoring wrong. If one made a mistake, the other would spot it.
Regarding 'cut off scores' - it is generally 7 for ASD and 9 for autism on the ADOS-2 (or thereabouts). This is a slightly outdated way of looking at things. 7 would have been high functioning (Asperger's type) autism whereas anything above 9 would be viewed as 'autism.
We now view anything over 7 as 'ASD.'
Can you point me in the direction of the things you have read on the internet that contradict this?
Thanks for your reply Susie, thats great. Thats why I was surprised as you say two professionals. Im glad I asked on here now.
All the information that I was looking at said that only scores from Social Interaction and communication are added for the purpose of the cut off and not only was a minimum total score required but individually there was a minimum for each section.
I havent actually come across anything that says the RRB score is included in the cut off for 7 & 9 or that its no longer a requirement to get a minimum in the communication. I must have been looking at ADOS info and not ADOS-2.
Anyway thanks for putting me straight, on this occasion Im more than happy to be wrong.
I think you have confused all of the parameters. Each of the modules is different, as I mentioned. This means they each have slightly different criteria.
It's also true to say that the spread of scores has to be across the different areas - so yes there is a minimum requirement under each section SA and RRB for example, and then an overall total score requirement.
However I think the clinicians (and the company) you are referring to are correct and it's just that you have misunderstood how the assessment is scored because you are not trained to use it. It's difficult to get your head around when it's not something you do all the time. Also I think the scoring has changed between ADOS and ADOS-2 so yes, perhaps whatever you read was out of date.
Hopefully you have not suggested to anyone else that this company is not competent in their diagnostic skill? I work for a company that sounds exactly like the one you have described and I'd be really upset to hear our clinical reputation being called into question in a public way.
Susie, in hindsight I should have posted asking about the scoring without the added detail, but no, other than what you can see here I havent shared any futher information. I would never have named the company even if youd have said they had made a mistake. It wouldnt have been my place, I would have spoken to the parents and let them deal with it.
Thanks for your reply, I appreciate it.
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