So CAMHS can't assess for ASD...so who can?!

[FlyingFig]

DS (6) was referred to CAMHS by the community paed (based at the CDC) as she suspected AS and wrote to them with his CAST results, his score was 31 and she said this was high and DS would need further assessment.

So we arrive at CAMHS yesterday to be told that they didn't know why we were there as it's the CDC who are qualified to diagnose, not them. However no one seems to know who is able to assess DS. His general paed mentioned some time ago that provision for ASD in Cumbria is limited but I had no idea that we'd be bounced around like this (plus I'm also annoyed that DS was supposed to be referred to SaLT in November yet the community paed has buggered off to a new post elsewhere in the country and SaLT haven't heard of DS, argh!).

I spoke to a lovely woman at the NAS yesterday and she confirmed that their database only throws up ASD specialists in Manchester or Cheshire as being the nearest to us, but kindly emailed me their details to forward to DS's general paed. The staff nurse we saw at CAMHS took details and history from us yesterday and said she'd arrange to visit DS in school to observe him and the most we can hope from their department is an EP assessment, which I know won't lead to any formal diagnosis.

I feel utterly trapped in a cycle of being bounced from one department to another and getting nowhere. I have the physio, OT and school gently asking me to push ahead with arranging ASD assessment yet there isn't anyone to tell me how or who I need to see. I would try to sell a kidney and go private if that helped but I think (from reading on here) that the NHS are reluctant on some cases to accept a private ASD diagnosis?

Or do I just accept that we have no hope of ever getting an assessment?

Sorry this is long and rambling.

It depends what the ASD pathway is in your area. In some regions CAMHS takes a lead in assessing, in others it is the community Paeds, and in others it is both/either.
Sounds like you need to go back to the community Paed, unfortunately.

I would suggest that you contact the health trust that you are under to request information regarding the pathway for ASD assessment - there must be some kind of one. Maybe you met with a community Paed who was unaware of it.

Sorry to hear that you are having to go backwards and forwards - very frustrating and time consuming.

We have been on this roundabout for 4 years and have just been refered to CAMHS. The school are also pushing me but you can only go as fast as the system allows. I totally understand how frustrating this is. Good luck with it all.

Here, in co durham, the Community paediatrician coordinates ASD assessments, involving whichever professionals appear to be relevant. For DS1, it was her, SALT, Ed Psych and CAMHS, since he is very hyperactive and was supposed to include OT, but they weren't taking on cases of ASD at the time. DS2's assessment didn't involve CAMHS at all.

Where i am it can be either community paeds, camhs or cdc but cdc only see under 5's.

Dd3 was eventually dxed with ASD by a consultant psychiatrist at camhs after being bounced around for 3.5 years. She was then discharged straight away because ASD is not a MH issue.

We are not in your area though and i know it does vary.

Keep fighting, you will get there in the end.

It does vary area to area. It is very unfair though that parents have to do all the running.

What is your GP like? I would get him/her to find this information out for you and sort out the correct pathway.

Thank you all for your replies, I honestly felt like my head was going to explode this morning

I think the problem is the lack of an ASD pathway; the CDC seems to be struggling lately with staffing issues, although CAMHS did say that the CDC have filled 2 posts within recent weeks so hopefully the whole system will improve over time I will ask the GP if he has any idea of the pathway that should be in place, thanks for the suggestions. The CDC initially refused to see DS as he was over 5, so we were bounced back to the community paed, who then bounced us back to OT and Physio at the CDC

The irony was that throughout the CAMHS meeting, DS sat for the whole hour reading his 'Animal Facts' book, without even looking up or taking an interest in the toys in the room. The nurse asked him what he was reading about and he hid his face, peeped out from behind his fingers and grunted "Dogs". She commented that she wished all the children she saw sat as nicely as DS and said "At least we can rule out ADHD"... I had to point out the irony as one of DS's IEP targets with school is sitting still for at least 10 minutes! If he hasn't got a book or a computer game in front of him he's like a jar of worms so at least if she visits the school she'll see this for herself!

Having said that, I'm not keen on that as a 'target' for DS as it makes me feel that the school don't appreciate that DS can't help being a wriggler, given that he's dyspraxic, hypermobile in all his joints and has low muscle tone. They seem to see his difficulty with sitting still as behavioural which saddens me as he really isn't in control of his movements for a lot of the time.

But that's a whole other thread

I would complain to PALS about being sent on a wild goose chase to CAMHS.

That should get you on tghe CDC's radar.

Please don't give up trying to get a formal dx - it's important.

Thanks WetAugust, I hadn't thought of PALS. I won't give up but it does feel like I'm swimming in treacle most of the time, such a fight.

Although I think we're now on the CAMHS radar after filling in the forms about family members with MH problems; turns out the nurse looked after my brother after his suicide attempt (which resulted in brain damage). It's a small bloody world, especially round here.