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Here some suggested organisations that offer expert advice on SN.

Which one for me- gosh, lorna Wing, daphne Keene?

(20 Posts)
Waitingforsleep Fri 07-Oct-16 10:50:09

Had it with the nhs.
Need to go private.
Dd has anxiety diagnosis but is on cusp to me of Aspergers, had hints of dyspraxia and after speaking yesturday to the assessor who said that she was complex and they are frustrated as she needs to tick the right boxes I have decided I need to go private.

So who would tell me if she has Aspergers or dyspraxia or open to anything Else it may be?

She is mildly dyslexic too and I think had dysgraphia although hoping to know in two weeks (paying again!)
She has hyper mobility and struggles with working memory

On another note and as an aside can someone explain why Dd would do this... She was going to IKEA with daddy the other day, for some reason got it into her head was lidl and even though we said IKEA so many times kept saying lidl (we know how to live!!!
Thanks again!

PolterGoose Fri 07-Oct-16 10:59:33

I would choose Lorna Wing Centre.

Waitingforsleep Fri 07-Oct-16 11:10:26

Will lorna wing consider other dx if it really isn't Aspergers?

PolterGoose Fri 07-Oct-16 11:37:38

I think so, best thing is to contact them and ask.

PolterGoose Fri 07-Oct-16 11:38:36

I've also heard good things about Help for Psychology

zzzzz Fri 07-Oct-16 11:53:43

Was she assessed for ASD/Aspergers with the NHS?

I personally would ask for a second opinion rather than going private. I think the assessment process is more robust and better recognised with the NHS than any private practitioner.

That said if you need the dx rather than the detail of deficit then private is probably a quick fix.

Waitingforsleep Fri 07-Oct-16 12:35:00

she was assessed twice by two different areas however from
My understanding nhs is tick box and private more at the whole picture
I need the detail too. Just can't get the commitment and help of what's going on from the nhs

zzzzz Fri 07-Oct-16 13:02:29

My experience is exactly the opposite. But I think the actual diagnosis IS very much a tick the criteria exercise. Good assessment will be much more enlightening though.

PolterGoose Fri 07-Oct-16 13:22:57

Some areas it does seem to be very much > gatekeeper > do ADOS > yes or no answer with minimal clinical finesse. NHS assessment is very variable, some very good and some very poor. NICE guidelines seem to be rarely followed.

Lorna Wing Centre will be very thorough, but very expensive. Help for Psychology who I've linked above follow NICE guidelines.

Fairylea Fri 07-Oct-16 13:47:50

We went to Daphne Keen in July with ds aged 4 who had had 2 years of asd NHS assessments and they kept saying he probably had asd but not making a proper diagnosis. Daphne keen observed and assessed for 2 hours and said it was very obvious ds had moderate asd and gave us a diagnosis which we then took back to the NHS services in our area and they accepted. Daphne keen works in the NHS at st Georges hospital so it was impossible for them to ignore her diagnosis. She was very good and well worth the £850 it cost us.

zzzzz Fri 07-Oct-16 14:28:43

Did you ask for dx Fairy?

There is some daft hurdle jumping with Virgincare here which IMO just wastes time but I think the process itself is ok.

Before I "went private" I would want to know what the barrier to dx was. In our case ALL dx had to go through an assessment process (which took 3 years) but since all support was in place and not dependent on dx it was better for us to sit it out and use the ££££ to support ds than speed things up and be out of pocket.

I'm uncomfortable with supporting private diagnosis for such a very serious condition anyway. The NHS should be providing dx and we should be advocating second opinions not lining the pockets of private practice.

If your child IS unable to be diagnosed that doesn't make her difficulties less just less well defined.

Fairylea Fri 07-Oct-16 15:39:06

I begged Norfolk to diagnose. He had "probable asd" written on every piece of correspondence and all over his ehcp. All specialists and nursery agreed it was most definitely asd. Time and time again he would miraculously score one point under a diagnosis on an ADOS test and when I read reports they had specifically left out parts of the test that showed traits of autistic thinking. I was fuming. They kept wanting to reassess him by nursery observations every 6 months which was stressful for all of us and every time they would say he scored just under the threshold. It was ridiculous. I wanted to apply for a place for him at a new autism specific state school and I couldn't do that without a diagnosis so I went to Daphne Keen. I still feel incredibly angry with the Norfolk asd pathway (and they know that).

I totally agree that the NHS should be diagnosing but unfortunately in a lot of cases like my sons they seem reluctant to put the rubber stamp on when it's very obvious to everyone else.

Waitingforsleep Fri 07-Oct-16 15:59:55

I too totally agree nhs should be doing but have lost faith completely.
I have spoken to lorna wing and they will screen the forms and information I send to them so make sure it is appropriate.
Gosh will also accept a referral from the paediatrician so will get onto that.
The pead was asking me to put together a letter for another team to re assess so I will ask it be gosh. Think that's my best plan.
Re Nhs the pead was awful this week, asked me the same question 4 times, each time forgetting she has asked and was completely clueless so I gave up!

PolterGoose Fri 07-Oct-16 16:07:31

Some areas the NHS autism services are in crisis. I think it's Lincolnshire who have only diagnosed 9 children in 3 years, and an MNer recently got told no diagnostic team available for her ds in her county. With average waiting lists of 3 years I wouldn't criticise anyone going private (and I'm a lefty who doesn't agree with private anything).

zzzzz Fri 07-Oct-16 18:15:48

It rather depends what that diagnosis brings.

Melawati Fri 07-Oct-16 18:56:04

Sometimes, even if a dx doesn't bring support, it puts a name to difficulties and can be a short cut to understanding. Being able to say DD has ASD is so much easier and quicker for others to process than describing her difficulties, which are complex and subtle.
She was dx by an NHS team, the report was very detailed and helped us enormously with understanding her better. But if I'd had to go private to get the dx I think I probably would have.
Lorna Wing is hugely expensive though, I would be tempted to try Daphne Keen first, her private dx seem to be widely accepted, and from what I've heard her reports are detailed and thorough.

zzzzz Fri 07-Oct-16 20:00:36

I'm not saying dx isn't useful, I'm simply suggesting that spending pounds to get something more quickly is only worth it if it will offer significant benefit. Otherwise wait for the NHS and use that money more wisely.

Things that actually helped ds where things like swimming lessons, music lessons, holidays, scooters, toys, solid alphabets, iPad, special scissors/sloping desks/pen grips, and ikea drawers to organise his clothes.

What did very little to help him was assessment.

Melawati Fri 07-Oct-16 20:58:20

Perhaps we came at it the wrong way round, but it was assessment, and the reports and feedback we got from it that led to us having a better understanding of what would help DD.
Before that we were floundering around in the dark.

Waitingforsleep Fri 07-Oct-16 21:32:29

Yes I feel I need the assessments and feedback and name to whatever to be able to have clearer understanding.
Totally with you on what works in the meantime and agree we have had a few more mini breaks, fun in our house, special pencils, cutlery, guitar and musical theatre lessons which are fab for Dd. However question remains the same for me and as she gets older I need to understand more so that I can prepare for secondary and life in general better.
Thanks all I will make enquires and update where I choose etc to help anyone else considering this

PolterGoose Fri 07-Oct-16 21:37:50

Good luck flowers

It is really hard when other people who you need to see what's going on can't see it (or ignore and minimise as was the case with some of ds's teachers hmm). I totally get the need for formal recognition.

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