Consultant paed. app. tomorrow ...(take 2!!!)

[mysonben]

DS's last appointment in october was cancelled.
He is to be review (yet again) by both his paed and the consultant paed and a decision is to be made whether a referal to CAMHS for asd assessment is needed.
Dh and I both want a referal, we have done enough waiting around already.
The 'wait and see' approach isn't an option anymore. I mean DS has been in the system with salt since age 2 , he is now 4, and although his language has progressed , many issues remains: sensory, socially, behaviours,... (have made a list of his struggles and how this impact on him and us).

In these 2 years he suddendly hasn't got up one morning and became 'problem' free.
It's not going to happen, he isn't going to become NT simply because his language will improve.
DS is now in a SEN language group two mornings a week + afternoons at MS nursery.
So some of his needs are met, but not all...it's only the tip of the iceberg and i suspect he will need a statement at some point, so we want a referal to try to get a dx for him as his issues are not going to magically disappear if we wait and see.

Sorry rant over...worrying that consultant paed will follow EP's approach of 'wait and see'.

Just say everything you've written above.

Best wishes

Say what you have written.

You say you have written down the things DS finds difficult/impossible to do, can you expand on this to say that without xyz skill abc is not going to happen?

It would seem the darker the picture you paint to more you are possibly going to get

Yes i suppose i can expand a little bit, the clearer their 'idea' of DS' needs is, the better they'll see that the good 1:1 interaction they see in their clinic is far from the whole picture.
On the other hand i don't want to sound totally negative as my stress levels go through the roof before , during and after appointments, and paed. said 'my worries showed' at last review back in august, so don't want them to think i'm neurotic or something

Fingers crossed for you, mysonben!!!

Hope it goes ok.

Good luck for the dx. writing it down really helps keeping your thoughts clear. Having said that, my short list seems to have got quite long, which does seem all negative but there are so many pluses.

Thanks for support.

Well we've had the appointment this morning, DS' paed was there as was another senior paed.
They both agreed that DS should be refered to CAMHS for formal asd assesment.
Didn't take long before they said they would refer, we didn't have to 'put up a fight' .
They said a lot in the observations made of DS at nursery combined with early development history and behaviours at home indicate obvious autistic features.
That said they still said should DS be formally dx with an asd , he is definately very high-fonctioning, and it isn't a 'clear-cut case', so Camhs may still possibly not dx him with asd but with sli + autistic traits. (SAlT report says DS has SLI)

Apparently it will take about 3 months for DS to start the asd assesment, so we should expect to be seen around early March, and that the whole dx process takes about 6-8 weeks.
So we are to see paed again at end of April for a review.

Not sure how i feel about it all, relieved that they are seing what we are seing and at the same time a sense of sadness as we are moving closer to dx.

sorry did i get this right, after 2 years of observations, reports etc you are about to start the assessment, wow. but not sure if congrats is the right word to use as to getting this far, you must have v. mixed feeling.

let you know how we fair tomorrow.

No, DS has been in the system for 2 years with SALT, but as salt never voiced concerns over possible asd, it was left at that until last november when alarm bells started to ring at nursery too.
Finally got 1st paed. appoitment back last april, and observations and reports started then....so although communication issues were identified early on , the whole 'social /behaviours/sensory' side of things were sort of missed or 'brushed under the carpet' until nursery voiced this concerns.

Oh, sorry, I miss read that, i'm very glad his under assessment.

wish I could go back and ask lots more qus as time allows things to sink.

his been dxed with PDD-NOS, according to wikipedia: Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS) is one of the pervasive developmental disorders and autism spectrum disorders.

PDD-NOS is a diagnosis for people who are well-described by the "PDD" label, but cannot be categorized by any other disorder. It is usually milder than autism and has similar symptoms to autism, with some symptoms present, and others absent. This disorder is sometimes called "atypical autism" by autism specialists. The boundaries between PDD-NOS and non-autistic conditions are not fully resolved.

He used the 3Di interval as the assessment and the observations. Paed asked ds qus, and ds could not look at him, sort of answered, then off. then kept asking to go home, so was a bit rushed in the end, and I missed a few qus I should have asked.
I think ds will probably be transferred to HFA/asperger, when he gets older, well i assume the dx`can change. but happy with this at the moment as it means he is in the system, yippee. Paed will forward his letter to ed phys and inclusion so they will all become involved. and does not want to see us for another year! I guess when school starts and see how things are progressing there.

feel sort of numb, its very strange.

Yes it is a good thing when things are moving finally.
I have looked into the PDD-NOS dx as i myself know that DS is on the spectrum but doesn't fit neatly into none of the 'categories' (not a nice word).
Jasdox are you in england? I was insure whether PDD-nos dx was given here, i had an impression it was more a USA 'label'.
All these different dx names are so confusing i find...

bristol, but the 3Di interval is american (its under assessment itself as a dx tool), so according to that its PDD-NOS, so the pead going to check what the status is here, but will likely to remain PDD-NOS. I think are a few dx in the country, but as it is such an ambiguous term its not really recognised, but as long as he has autistic spectrum written somewhere, i am hoping that will be sufficient.

it is v. confusing, and even with the different names, the individuals vary so much, at least when you say ASD you know what the major traits are

Thanks Jasdox for reply.
I had been looking into the most info i could find on PDD-nos a while back, because in my personal opinion of asd issues concernant DS's 'symptoms' or traits or whatever the name for that too, he does 'fit' the pdd-nos criteria the best.
My personal view on Pdd-nos as a dx is that it should be recognised more widely for children who don't tick all the boxes perfectly. But that's just me...and my opinion is influenced by my experience with my DS.

Will have to wait and see to see Camhs...

....'recognised' isn't the word! I mean to say it should be used more widely.

just realised I wrote interval, meant to be interview, sounds a bit better. I like the term PDD-NOS, I think it fits ds well. Somewhere i read, its treated like HFA, as opposed to asperger which can require more support than often provided. a wider usage would definitely be benefical.

If you mention it to CAMHS be interesting to see what they say.

(Judging by ds anxiety at a party today, and his distress at talking about big school, its all v. worrying )