CAMHS Rargh.

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DS2 is under the CAMHS team and they were doing what i thought was the ADOS but appears to be just a gathering of information from anyone who comes in contact with him. They were supposed to come back to us 3 weeks after our last form filling appt with a "this is where we should go" kind of meeting. Fast forward to now - 4 ish months later and we can't get hold of anyone to give us an update, his behaviours are as bad as ever and he has an appt with his paediatrician on Monday. It would be useful to let him know where DS2 is at in the process of a possible proper diagnosis. Paed wouldn't refer to CAMHS yet, preferring to wait a year or 2 but when the referral was offered by GP we took it - as you would!
No one seems to talk to anyone else and it's like starting from the bottom all over again every time we see someone. No one offers any support and i don't know where to ask for it until they tell me, which they won't until he has a proper diagnosis rather than the paeds writing that it may be this that or the other.

Also chasing up a referral to a surgeon for his bowel issues. Feel like i have covered lots of ground but got absolutely nowhere since i started the process of finding out why he was so different when he was 2 and almost non verbal! He is now 6.
Is it so wrong to shake someone at the next meeting and say "Just give him a sodding label so i can get him the help he needs"?!

(sorry slightly hysterical post)

Grab your paed by the throat and demand some action! Why the hell does the paed want to wait 2 years (?!) to refer? Who will give you a DX in your area? In mine it is the developmental Paed, not CAMHS. They may be called in if there are behavioural or anxiety problems but they don't DX. Are you getting adequate support at school? Do you need a DX to expedite that? for you!

I'm not trying to be rude but what is the name of your PCT? I ask because the cahms team in my area were responsible for a 6 month wait for ados becoming a 2.5 year one!

Move heaven and earth to get a SALT and a developmental (NOT community) peadatrician involved, and ask them.

Sorry for delay - had internet issues after i posted!

I don't know who does what here. I have had to access all these departments on my own and not via anyone else! Even had to fight for SALT!

He may not need a dx of ASD or whatever else but am beginning to feel that i am [putting him thru all this and he is just quirky and my parenting isn't compatible with him. He needs help at school tho.

The paed he is under is a paediatric consultant with a speciality in Autism. On the fist meeting he said that DS2 did not have autism and we were to make an appt with a paed in the same department who specialised in ASD and Aspergers. The meeting we had with him was again a starting from the beginning one and he said he as happy that we stayed on the first paeds books....i just don't get it! I don't know what to do.
There are no instruction manuals for tasmanian devil children!!

As far as i have discovered it is CAMHS that instigate ADOS here. I am not sure what the difference is between a community paed and a developmental one. We go to the childrens centre at the local hospital f that makes a difference?

You could apply for a statement of SEN. Not saying you will get an assessment or a statement or def need one, but it has the advantage of a legal framework with time limits and can help diagnosis move along that bit quicker because the LA need 'evidence' to make decisions - esp if you appeal any refusal - and they tend to demand the paed, CAMHS etc give them the evidence. Look at IPSEA. Even if you just shoot off the letter asking the LA to consider an assessment (draft on IPSEA website) the LA will then write to the school, CAMHS, Paed etc asking for their 'opinions' so it can speed things up. Of course you would then have to cobble something together as to why you think an assessment is necessary - but that could be that you think an assessment is necessary to get to the bottom of his problems at school etc. NAS and IPSEA advice lines can help.

Hi. You need to start complaining. Write to the Head of your local PCT and also the Clinical Lead at CAMHS. Complain about the unacceptable delay in CAMHS getting back to you and for the length of time it is takinng to get to the bottom of your ds difficulties.
Say you find it unacceptable that noone is communicating with you and it is not your job to coordinate the professionals into speaking with one another. Ask for a multi-disciplinary meeting where everyone involved in your ds case gets together and shares ideas and makes a plan of support for your ds.
State you are making this a formal complaint and that you want a satisfactory response in WRITING within 14days.
You will find that you will often need to "shout" and complain to get the support your ds needs. Remember you are your ds best advocate and know his needs, so see he gets them met. Good Luck!