advice and reading between lines please after ados test

[mrshess]

Hi everyone my son who is 3 and half had the ados test on tues. We have suspected something is not quite right for some time now.
Anyway please can people give me their thoughts on reading between the lines as its unlikely we will get results until Oct( due to them wanting to observe him at nursery and not being able to get to see him before term finishes)
Son was very chatty and gave eye contact during test but during the imaginative play bit he just couldnt get what was being asked of him. He stared blankly when asked to pretend to drink a cup of tea or when asked how to brush your teeth he would only use words not actions. They then got some playdough out and asked to make a cake for a doll which he just plonked next to the doll but it felt to me he knew thats what the woman wanted rather him to do rather than him thinking he was making a cake.
At the end of the test the ladies said he had done really well and was really chatty. They never mentioned the imaginative play and just said they had to score his results but would have to observe him in nursey for final result.

Anyway (still with me!) i had a meeting with a lady who is in charge of my sons refferral to different people as he has a lot of issues like sleep so her service is supposedly where we go for all his problems (psychologist,behaviour team, ados testing)and i said about the observation and she sort of let it drop that from reports from SALT and what i had told her it sounded like Aspergers. She sort of said that this was what people thought but then said its not her who diagnoses. Im getting paranoid now as Aspergers has never been mentioned to us other than a sure start worker who saw my son for 10 mins and then said aspergers as if they are all in consensus this is what my son has and they have never mentioned it to us.
Anyway my questions are this
Is the Ados test used for diagnosing Aspergers?
From the sound of my sons observation and from what this woman said about my sons report fromSALT would you think they all think its Aspergers and not Autism. I had a quick read of this report and nothing jumped out at me saying he thought something was wrong other than imaginative play that my son didnt do it at all but he is getting chatty every day.

I also thought they couldnt diagnose asperegrs if there had been speech delay which my son had.

Would this woman have mentioned Aspergers unless there was a very high chance of my son having it?

I am new to all this and feel paranoid as we have been made to feel like we want something wrong with our son and we have had to fight for this test and now they are sort of saying Aspergers.
Im looking for any advice as i honestly feel let down at the minute as we cant wait till oct not knowing.

Hi mrshess, Ados tests are usually done for children on the spectrum that are not especially obvious. The main difference is that children with Aspergers don't usually have language delay - at any age - if anything they don't stop talking but in a sort of mostly one way rather than interactive way. Children with language delay or disorder (some aspects more delayed than others ie. receptive less advanced than expressive)usually get a diagnosis of either autism/asc/asd? . I understand the Aspergers diagnosis is being 'discontinued' and all spectrum conditions will come under the same ASC umbrella. I think 'they' are probably being careful at the moment because some children have had diagnosis taken away. It is natural you want to know and waiting can be difficult but if you want to talk to people who do 'know' and check the characteristics, let me know and I can steer you in the right direction. angela62.

Hi thanks for replying please could you tell me what /asc/asd stands for?

Sorry i must sound really thick but im getting confused with asd and autism is this the same or is asd aspergers?

Tell them you aren't sending him to nursery next year, it isn't compulsory after all, so if they want to observe him with his peers they'd better get a bloody move on, or just give you a diagnosis right away and stop faffing around. Good experts can give a diagnosis in 2 hours.

If not I'd consider a private dx. All they ever do is stall and stall and stall, so they can save money on 'treatment', when actually 'treatment' will save them a hellova a lot more money in 10 years time.

Oh, and don't let them diagnose Aspergers, rather ASD, and no 'high functioning' either. That way leads to misconceptions that he doesn't need support and he will, possibly more so the 'higher' functioning they are.

hth

asd - autistic spectrum disorder. Some people prefer to use 'condition' instead of disorder.

ASD is an all-encompassing term for people who have high funcitoning, low funcitoning and aspergers. It is better at this age, to have the general diagnosis rather than a specific one because the brain is still developing and as such with the right EARLY INTENSIVE intervention, you can actually influence where you are on the spectrum.

4 months is not an acceptable time to wait for intervention at this age. It is a large percentage of his life. Sorry, I know this will frustrate you and make you cross. Absolultely not trying to make you miserable, just save you tears later.

Thanks everyone we have been put through hell for over 2 years waiting and waiting and nothing happens, pushed from agency to agency.
High functioning aspergers is what this woman said so to us so is this a way of fobbing us off and not finding what is actually wrong?
Sorry if my terminology implies that high functioning aspergers is not a problem, i dont know how to word this, i really am new to all this after being left alone with no support and now being thrown in at deep end and no one is actually saying what any of it means to us and i really do appreciate any thing people have learnt what dirty tricks they try to get rid of you as i seem to be falling for them all.

mrshess Stop that. You are a vulnerable mother, emotionally tied up in getting the right support for your son.

'They' are paid, trained and experienced in fobbing-off techniques. DO NOT EVER feel guilty about not being able to match that.

Firstly, get yourself a copy of Hanen 'More Than Words' and try to change the way you parent to seize all the opportunities that are presented for communication.

Research Applied Behavioural Analysis, and possibly get Catherine Maurice's book 'Let me hear your voice'.

The biggest mistake I ever made was to spend too much time battling for shoddy provision which my ds is 'entitled' to, but the quality of which is absolutely not worth the battle. The sooner you face up to the idea that it is YOU that is going to make a difference to your ds the better really.

It is bloody unfair, both the effort required and the emotional burden this places on you, but whilst it might all seem very daunting at the beginnin, actually, once you know what you are doing your parenting style kind of delivers the therapy and you stop thinking so hard about it.

If you can afford a private dx then get one now, as that will give you credibility when talking to the teachers about his needs. Don't let go of the NHS one though. Insist that your private one is a 'second opinion' that just came first, and as I said, just get asd (there are other benefits of this that will come later in his education).

I'm always a bit blunt and bloody miserable so I apologise for that. One step at a time and you'll get there.

hth

oh, and start as many threads as you like, with as many questions as you like. Some of us that have done a bit of battling like to help others avoide the mistakes and wasted time that they have experienced.

I really cant thank you for everyones advice, i am ashamed to say i have lost touch with all my friends with 'normal'children as i didnt want my son standing out and i was constantly on edge when my son screamed when any child came near him and parents looking on in horror.
Thank you for the book reccommendations i will defintely try and find them.
I have asked for support groups from our social worker and she half heartedly gave me some leaflets about some but sort of made me feel cheeky for asking to go as we hadnt a diagnosis and i could tell she was thinking there is nothing wrong with my son other than he is hyper.
So i feel me and my son dont fit in anywhere and i have no one official to ask for advice as they seem they dont want to know.
Has anyone else gone to support groups before an official diagnosis?

I don't think it really matters so much what his diagnosis is (to you at any rate). Just assume that he is 'on the spectrum' and start deciding what you want to do know.

There are a load of therapies out there, which some people choose to do. All depends on what his actual problems....

You are not at all alone with losing touch with friends with 'normal' children. I certainly have more or less, and I think a lot of others have as well.

If it helps, Aspergers is a more mild condition than Autism, so surely a diagnosis of this is better?

Peacefulliz a diagnosis of aspergers would be better, my concern was why are they testing for autism but whispering between themselves its aspergers and not ever telling me. I dont know maybe i have become too paranoid but i have noticed there is a lot of information sharing between people and i was never aware of it.

Aspergers is not a mild form of Autism. It is far far more complicated than that.

It used to mean a 'verbal' version of autism that had a good prognosis for independence, (my version, not an official one).

Aspergers is not a 'better' diagnosis either. In any case you don't want a 'better' diagnosis, you want a dx that gets you the support you need. That the dx are thrown out fairly randomly, it is better to have the more general one whilst you work out which version you actually need for your ds and you won't know that in your area until you get a dx and start engaging with agencies. It also leaves open the opportunity to get a further dx later which will force an out of date statement to be opened and challenged again.

Some areas do dx Aspergers (wrongly) if a child scores quite mildly on the ADOS. They do here.

You are right to say that speech delay should rule out Aspergers, but different psychs have different rules, stupidly.

I think ASD is a more helpful label as it's all so damn subjective and it's a better umbrella term.