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

[Waitingforsleep]

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!

[Waitingforsleep]

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

[Waitingforsleep]

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

[Fairylea]

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.

[Fairylea]

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]

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!

[Melawati]

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.

[Melawati]

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]

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