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recommendations for ASD assessment willing to travel

14 replies

cornsilk5793 · 04/07/2010 11:02

Can't wait for CAMHS any longer - things are spiralling out of control for ds. Has anyone had a private diagnosis for AS/ASD?

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ReasonableDoubt · 04/07/2010 12:05

cornsilk, can't help with recommendations, really, but we did look into private diagnosis at one stage, and got a list of private Paeds fom SOS:SEN. Google them and give them a ring?

Just wanted to offer you some slightly different advice, if I may. Usually, waiting lists for private diagnosis are quite long. When we were going though this earlier this year, we couldn't find anyone in London / the SE who could see us sooner than three months - which is why we didn't go down that route.

If there is ONE thing I have learned from the rocky road to diagnosis, though, is that pushing and pleading and demanding can have excellent results. I started firing off emails left right and centre when CAMHS dithered too long. I wrote to the Paed we had originally seen at the CDC, cc-ing in CAMHS, the school, everyone who had ever seen DS, saying that the situation had now reached crisis point and outlining the reasons that a quick diagnosis was crucial.

Nobody replied. But they ALL read that email, you mark ym words.

I then started ringing people up. I hammered the Paed's secretary for cancellations (I think I might have cried on the phone a few times ). I rang up the multi-disciplinary team centre where his assessment was supposed to eventually take place and made my case again to them. I got a lot of 'nothing we can do'....but low and behold, the Paed squeezed him in a week after my phonecall. He was diagnosed that day.

I also got my GP to write an urgent letter to CAMHS/the assessment centre/Paed urging them to assess sooner rather than later.

I'm not saying that putting pressure on them works in every area or for every case, but it is worth a try. I became absolutely demented - like a dog with a bone - and I think it was probably not great for my mental health (!), but I would NOT take 'no' for an answer and I became like a broken record: 'My son NEEDS a DX NOW'.

Good luck.

cornsilk5793 · 04/07/2010 12:07

Thankyou - good advice which I will take

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cornsilk5793 · 04/07/2010 12:17

I am seriously thinking of getting legal advice to deal with the LEA - should I mention that to CAMHS do you think?

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ReasonableDoubt · 04/07/2010 12:27

You could mention that you are seeking legal advice to CAMHS, definitely. Whether or not uou actually go ahead and seek it at this point - not sure. Legal advice is expensive, for one thing, so you want to use it sparingly, but it also really comes into it's own when you are dealing with the LEA, statementing, discrimination by schools etc. I saved it up for when we were (are) seeking a proper statement for our DS (a whole other story! ).

How long have you been waiting for a DX? I don't just mean 'how long have you been on the waiting list', but how many months/years have you suspected something was wrong and wanted the health professionals to make some sort of call on it? Take this figure (two years, or whatever) and include it in all conversations and correspondence you enter into from now on.

'We have been waiting two years for a diagnosis'

'Our DS has endured two extremely difficult years without a diagnosis'

'It has become impossible to get crucial support for our son over the past two years, as no diagnosis ahs been forthcoming'

etc

ReasonableDoubt · 04/07/2010 12:27

Oh sorry, you are talking about the LEA.

Does your child have a statement? Are you seeking one?

lisad123wantsherquoteinDM · 04/07/2010 12:57

I too would recommend making noise and calling people. We were told 6-9 months wait for DD1 assessment but only waited 8 weeks int he end. Really is pushing it forward, but from all i heard so far some places dont accept a private dx
Also might be worth asking for referal to GOSH, they have a specilaist team for dx of asd, maybe they are quicker?

cornsilk5793 · 04/07/2010 14:30

we have waited for years from when he first went to the pead and he initially suggested AS.
Thanks for those phrases- any more most welcome!
Will google GOSH - thanks

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debs40 · 04/07/2010 14:56

GOSH only take tertiary level referrals, that means they are a specialist NHS service who will only see children post diagnosis by their own secondary (hospital) level service.

So, basically, you go there if your service tries to dx but can't because it is complicated or if, after dx, you want a second opinion.

They do not take private referrals either.

EccentricaGallumbits · 04/07/2010 15:50

Hi Cornsilk. I was just about to pose the xact sam e question (plea for help!)
DD2 is being unbearable and I am majorly struggling the the mo. She's been refered to PDDAG assessment but all I've heard back inthe last 4 months is a letter confirming recipt of referral and arning there is a long wait for assessment.

DD is not happy at all (neither am I!). I was literally about to post the same thread!

I was looking at the NAS website earlier butthey als fdon't do private assessment - only tertiary referrals.

I'm going to get on the phone tomorrow to CAMHS and plead for help. They stopped wanting to see DD when they did the referal to PDDAG. Leaving us alone. This isn't working and she/I/we need some sort of input to stop either her or me killing somebody or leaving (which I was on the verge of earler).

I'll email you.

cornsilk5793 · 04/07/2010 16:39

have mailed eccentrica

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tribunalgoer · 04/07/2010 17:32

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cornsilk5793 · 04/07/2010 17:35

okay - thanks
will google

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tribunalgoer · 04/07/2010 17:37

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ReasonableDoubt · 04/07/2010 18:25

Totally agree with tribunal. As I said earlier, I badgered to the point that it was wrecking my mental health for a bit. I literally spent every day plotting the next move in my 'campaign'. You have to kind of suspend your normal ways of doing things and become a bit mad (in a cool, calculated way, of course ] for as long as it takes.

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