first app. with Cahms went well...

[mysonben]

Hi i haven't been on here a lot lately.
But i thought i'd post an update about our long awaited pre-assessment interview at Cahms this morning.
It lasted over 1h 1/2, we saw the paed in charge of the autism team.
We had prepared some notes about DS'development which she took, she also took a copy of the report from Bibic (it included the results of the Gars test which indicated that DS was very likely on the spectrum).
We were asked many questions, and she observed DS playing, then she interacted with him through play.
She then said it is clear DS had autism, and she is putting him forward for the full dx assessment (should be in May as there is a wauting list).
DH and I were shell shocked! Never before a professional has been so forward with their words, usually they are cautious and mill around the issue.
I bawled my eyes out when we got back to the car, i had worked myself up thinking we were going to have a battle on our hands to get him to have the full assessment, but we didn't have to, all my videos stayed put in my bag.
We just were not expecting that paed was going to say it so frankly iyswim?

And the good thing is she is going to contact the EP and the nursery as she wants then to make better provision in terms of support with transition for when he starts school in september.
That's it really, so all in all it went well and things are moving forward even if i'm heartbroken atm ... i'll be ok in a couple of days.

Glad you got some answers today.

Best wishes

I know its upsetting, but just think that it is now a new start and now you have a diagnosis its good because you know where to go from here. i think its great that the paed was so direct saves all that pussyfooting around and just goes to show that paed knows what they are on about. i had 2 years with a paed telling me there was nothing wrong with my son, 7 years on he has sld, golbal developmental delay, epilepsy, on autistic spectrum, so i wish i had had your paed. Give it a week or two to get used to the idea and you will be fine. theres lots of info out there. Good luck, thinking of you.

Thank you both.
It is good that paed isn't pussy footing around, it is so frustrating when they take their time and we end up on a merry go round, i mean we've had nearly a year of reviews with community paed (who was good and understanding btw, she was the first one to suggest ASD back in april last year), but the others involved like SALT, EP and SENco never seemed to agree fully that ASD was a possibility. They were content to state the obvious that DS has problems with language, with social skills and atypical behaviours but were milling around and didn't want to say the 'A'word. Maybe it's because they are not qualified to actually say it?? but at times they seemed almost to disagree with community paed.

Anyway i am pleased that Cahms are taking us seriously and that the ball is finally rolling.
The paed there also recommended we contacted the NAS re: courses for parents.
So i take it we don't need to wait for the formal dx then?

Cheers.

No - you don't need to wait for a 'formal' dx. For the Paed to have been that candid about telling you that your DS was 'very likely' to be on the spectrum you can take it as almost certain any 'formal' assessment and dx will just confirm what the Paed has told you.

Try to look at it positively - your DS is very young and so has time to benefit from support that can be tailored to assiisting him in acquiring the social and communication skills that don't always come naturally with that condition. early dx is a very positive outcome.

Also, you have been spared years of has he? hasn't he?. It's no exageration to say that some parents have been kept dangling waiting for any dx for a decade or more. You have the answer and now you can use that knowledge to your DS's benefit.

It is still hard to hear it - my own first reaction post dx was the same as yours.

Best wishes

Thanks Wetaugust.
Will contact the nas and see what they have on offer then.

I must say it was first shock then relief to actually have an nhs specialist confirming it without hesitation, as after a year of maybe it is? maybe it isn't? at least someone who listened, looked at DS , saw the whole picture and said 'it's autism'. I realise many families are/ have been witing for a lot longer than a year sadly.
I was quite worried about Cahms as i read many posts about bad experiences here on the sn board, so i was aware it's a bit of a postcode lottery, but i have been surprised by them in a good way i suppose ...so far so good anyway!!

We had our sons CAMHS appointment today. They confirmed that they would be doing the ADOS. There were 3 professionals in the room. Already seen the consultant psych privately so appointment didn't take too long.

Thinking of you mysonben. I had exactly the same reaction. Had kind of convinced myself that DS was on the spectrum, but to have a professional confirm it was quite shocking and unexpected. It still upsets me. Ridiculous really because I get so cross with the 'oh, there's nothing wrong with him' brigade.

Hi mysonben,

I am glad to read you got answers although this was not what you wanted to hear at all.

Re this comment:-
"And the good thing is she is going to contact the EP and the nursery as she wants then to make better provision in terms of support with transition for when he starts school in september".

This is all well and good but he will not be at nursery for a long longer. She contacting the EP is good because this person can observe your son and even make a recommendation re statementing.

In the longer term also he won't get very much support at school short of a Statement being in place. This is a legally binding document, anything else offered is not.

I would prempt any problems now by applying personally for the Statement for your DS before he starts reception. Do not wait for school to apply for it (good god no!), do it yourself and do this asap (these things can take six months to set up). You know its been done then and you as parents can appeal if the LEA refuse to assess. The school cannot do that.

www.ipsea.org.uk have model letters you can use.

You are your child's best - and only - advocate.

All the above is probably also very hard for you to read but if you do get him a Statement it may go some way to making his life at school that bit less traumatic for him and by turn yourselves. He deserves a right to be fully educated and to reach his full potential.

Hi mysoben,

Even though you it, it still shocks you when someone else says it, but am glad after all this time they have finally told you. My paed confirmed it in minutes of entering the room, and after seeing him again (for other reasons) he was surprised I had not received his letter (i'd made several calls!), so he photocopied his one, and it states ds name and problem: PDD-NOS, HFA, I am guessing this is regarded as I formal dx . But does not want to see us until ds has started school, and will get inclusion team to help ds transition into school (planning meant to start March). Although have not been allocated school place

Now not really sure what next... but his started martial arts and seems to enjoy it, hope it helps his co-ordination and concentrations in between his now constant 70's disco diva-ing.

glad it went well
best wishes