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advice please - DS's Paed won't accept DKs recommendations.

(12 Posts)
snowgirl29 Wed 10-Aug-16 07:33:38

Can anyone advise me on what to do next please?

For those of you who remember my previous threads you'll remember what a time of it we've had with DS. We saw Daphne Keen last summer who was very thorough and made recommendations that he is referred to an expert SALT for complex language disorders and also that he has the ADOS test done. She said she felt DS was under the Autism umbrella but she didn't know where to place him under it as she didn't have enough professional evidence to back up her findings of say, an aspergers diagnosis for example.

We saw his Paed yesterday who said they'd read the report, still don't think there's anything wrong 'but they're prepared to be wrong'. Referred him back to the normal SALT (not the expert one - plus GP already referred this for me a while ago when his new school asked for it). Wont refer for the ADOS test as they don't think it's Autism but did give me the ASD forms for me and DSs school to fill in! confused

DS has been referred back to CAMHS for the 3rd time due to a couple of incidents I can't go into here as it's outing - basically he has no concept of danger awareness whatsoever - this is ignored every time I being it up with Paed.
The Paed at his last appointment said that they would discharge DS at the next appointment if he was 'still okay' hmm, the GPs said to wait for that to happen and them they could go back and adk for a different paed, as if we started a complaint whilst he was under their care, they'd simply say, 'but we haven't discharged him, we're still keeping an eye on him but doing sod all about all his issues. They wouldn't discharge him yesterday yet appear adament this is nothing but GDD <sighs>.

I truly am at my wits end now, what would you do in my situation?

PolterGoose Wed 10-Aug-16 08:30:44

Message withdrawn at poster's request.

snowgirl29 Wed 10-Aug-16 08:40:33

Hi poltergoose. DS is 7.5 now.

zzzzz Wed 10-Aug-16 08:45:16

The forms for you and school are the first round of getting to the ADOS, as is the salt. It's like going through triage at a and e.

How old is he and what support are you hoping for from dx? You can probably get it all now on a "needs" basis and let the dx follow.

Why do you feel your current peadiatrician is the problem?

What concrete difference is there between GDD and ASD in your opinion that needs addressing?

Deep breath, this will get better.


PolterGoose Wed 10-Aug-16 08:47:06

Message withdrawn at poster's request.

PolterGoose Wed 10-Aug-16 08:47:54

Message withdrawn at poster's request.

OneInEight Wed 10-Aug-16 09:01:26

I remember the feeling of frustration whilst we were waiting for the bit of paper with the diagnosis written on BUT actually when I think back the piece of paper led to little direct support so actually our energies would have been better placed in other directions.

The most support has come from a statement (now EHCP plan) which meant my ds's got extra support at school and ultimately a placement in a special school. As EHCP's are based on need rather than diagnosis this is where I would invest most of my time trying to seek if you have not done so already.

If you are convinced he has an ASC then start using strategies for children with an ASC now. You don't need a piece of paper to give you permission - if they work fantastic. If they don't then maybe he hasn't an ASC after all but you certainly won't do any harm.

In terms of access to respite I am assuming that you would gain access because of the global delay diagnosis even without a formal ASC diagnosis. If you haven't already ask social services for a carer's assessment and they will be able to signpost you to what is available in your area. If anything like ours not a lot due to budget cuts but maybe something.

DLA again based on need rather than diagnosis. You can use your documentation from Daphne Keen as evidence.

I guess the diagnosis becomes crucial only when you want to access ASC specific services. So for us ultimately we did need the bit of paper for ds1's current school as it is a specialist school for children with an ASC but I think this has been the only instance where it has been vital.

youarenotkiddingme Wed 10-Aug-16 09:31:19

In my area camhs carry out ados. If he's under than could you ask them about it?

A ideation site is a good start. For us informed part of the diagnosis process.

I'd maybe try a different tact with pead. Maybe ask for a specific breakdown of what areas he's delayed in as he has GDD. Get them to break it down and be specific and then ask to access specialist salt etc that way if they can't give specifics etc.

zzzzz Wed 10-Aug-16 10:43:49

What sort of "expert" salt does she think he needs to see?

To be honest it would be monumentally unfair if you could pay privately to piggyback over the early assessment process. DK can't possibly know what level of salt he is seeing now (for example our bog standard one IS the specialist ADOS one at camps).

What's happening for him that is causing difficulty? The dx process IS NOT the gatekeeper to support whatever anyone implies. EVERYTHING is accessible now.

Do you know what he needs?

snowgirl29 Wed 10-Aug-16 11:43:10

zzzzz I assure you that piggybacking is one thing that hasn't happened, even with DKs input. DS has been 'in the system' for years, starting off at salt and then on to a community Paeditrician.
DK was my last resort, not my first port of call.
Here's an old thread of mine that highlights some problems.

snowgirl29 Wed 10-Aug-16 11:46:17

youarenotkiddingme every time he goes to camhs, he's signed off, they say there's no mental health issues and that maybe there's something else going on. Go back to the Paed and then get the same There's nothing here either'.

He sees camhs again shortly and they've told me over the phone that they now do the ados thing but I suppose it's up to the experts what they think he needs.

zzzzz Wed 10-Aug-16 12:53:07

But what do YOU think he needs?

I think it would be far more sensible to focus on that. I will try to read the thread you've linked to if you can't give a synopsis, later but my time isn't infinite and I'm not sure it will change my advice or the fact that a private Drs advice doesn't and shouldn't allow access to assessment or treatment on the NHS without an NHS practitioners agreement.

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