Please could someone help me find some information?

[DishwasherDogs]

I have to fill in a satisfaction questionnaire about ds's assessment.

We were told that children can meet the criteria of asd in the ADOS assessment from learned behaviour, this is something I want to give strong feedback about. I spoke to someone on the NAS helpline who said that this is absolutely wrong (and loads of you on here also said the same).

Does anyone know if there is any info out there that may help me defend myself here? I've been googling but can't find anything helpful.
Failing that, how could I word it effectively?

Other things to mention are that he met the criteria in both DISCO and ADOS, but they've still put the emphasis on parenting and learned behaviour.
We were told things conversationally by the psychologist that are evidence of masking but these were not included in the report.
The follow up was dreadful, I was spoken over every time I tried to make a point about the whole thing until I eventually gave up.
I was also told that ds would probably be a lot easier to deal with if he were an only child - we have 4 children, how on earth is saying that helpful? But this is maybe something that's not worth complaining about.

Sorry, I know some of you have heard this over and over and over , but if anyone knows of any evidence of ADOS criteria not being met be learned behaviour I will be forever grateful!

I haven't been able to pinpoint anything for you yet, but might be worth going through the NICE guidelines: www.nice.org.uk/guidance/cg128

Thank you, I didn't think of that!

Not sure if this bit would be useful:

"Be aware that some children and young people will have features of behaviour that are seen in the autism spectrum but do not reach the ICD-10 or DSM-IV diagnostic criteria for definitive diagnosis. Based on their profile, consider referring to appropriate services."

He did meet the criteria for both.

Can NAS send you anything in writing confirming that they said on the phone?
Have they given him the diagnosis? Surely they can't deny he has asd if he meets the criteria in 2 assessments!

I'll ring them again on Monday and see.
No, he didn't get a diagnosis, they felt that his behaviour in school was too sophisticated for someone with asd so over-ruled the rest.
With the ADOS, the threshold is 9 and he scored 10.
I'm not sure how the disco is scored, but the report says he met the criteria.
On the report both our bit and the ADOS bit correspond and back each other up.
The school obs described a normal 9 yr old.

I feel I should know this but what is the difference between ICD and DSMV? DS2 has just had a DISCO with MS after 'passing' ADOS with local comm paed. She said he clearly meets the criteria using ICD but also for SCD on DSMV???

That's shocking!
Can you appeal or complain? What's the point of having a criteria if they refuse to stick to it.
NAS are usually quite good at backing stuff up in writing so hopefully they can help you out.

I don't know KeepOn I just C&P'd it from the NICE guidelines!

Fairgame, NAS felt we have grounds for complaint, but right now I don't have the energy. When it's all over I will. I'm hoping that honestly filling out this questionnaire may give me a chance to offload and stop focusing as much on the injustice of it!
We can't appeal because they've left the case open, but we're not prepared to wait the 2-4 years for re-assessment as he has secondary transition in the next couple of years and he needs support in school now, not when he's 13.

DS2 has also been referred at my request (first appt last week) to GOSH HFA clinic for second opinion. You can request referral from your GP if DC have already had assessment/ADOS but you do not have a clear diagnosis as you have clearly 'exhausted local expertise'.

We're waiting to hear at the moment if we can get a referral to the Elizabeth Newson Centre.
I think they've got a few months waiting list, but hopefully it'll be worth it! :)