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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

has anyone payed private for a dx of Aspergers ? if so how much?

78 replies

trace2 · 17/09/2008 15:39

we been told it can take years to get a dx for ds so thinking of going private, do we wait for nhs or pay? does anyone know how much it is?

but i can not understand how it takes so long on nhs, where when you pay you can find out in a day!

OP posts:

Peachy · 17/09/2008 15:43

Thing is Trace, the lea etc will fight a private dx for all its worth; ime in the end you'd be better waiting for nhs.

What you can do is get an ed psych report done up ready for nhs (and / orsalt) as that averts a lot of the delays; or consider bibic (www.bibic.rg.uk) who will do reports (our Paed liked them, some don't) and at least give you therapies to get on with.

Jenk1 is a bit of a expert on this iirc

Original poster

trace2 · 17/09/2008 15:56

oh please explain more what i have to do ds school dont see a problem and they say we carnt get a stament till he s dx am lost tbh i dont know what to do we need to help him or us understand him

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SammyK · 17/09/2008 16:01

I am finding it frustrtaing too.

Edpsych hasn't even met ds but says if he can 'cope' til he is 7 he will assess him.

So am going down NHS route, which is dragging on. School seem reluctant to officially back me too which is upsetting, although they are helping him in other ways but these are not promised or permanent help so can't be relied on. Whereas with a dx he would be legally entitled to everything.

I didn't know it was so quick privately!

Peachy · 17/09/2008 16:02

you can get a statement pre-dx, ds3 has a 1-1 and no dx. ds1 did for a bit too.

the nhs delays are partly caused by stupid waiting lists for each different assessment, so you could in theory get those done yourself, which should help.

What we did was go to bibic- give them a call; the therapist will call you for an hour long chat to learn about your child explain and thats free and non- cmmitment. you can book salt and ed psych via them too.

twocutedarlings · 17/09/2008 16:03

Trace - I live in sheffield, i believe that your quite close to me? Where is it that your DS is being refered to? is it Ryegate?

If so then once you have an app you shouldnt have to wait to long for an assessment.

We waited 6mths for the assessment and DD was dxd within 2 mths.

In the meantime you can indeed apply for a statement (the school are wrong) admittedly its easier to get with a dx, but it not required the assessments are based on the individual child not the DX.

Have a look at the ipsea website
Here

Peachy · 17/09/2008 16:03

sammy with a dx there is no legal entitlement untl a statement is awarded. you do not need a dx for a statement. look at the ipsea website for this.

schools do fight sadly, ds's school have been a complete pita.

Tclanger · 17/09/2008 16:07

This reply has been deleted

Message withdrawn at poster's request.

SammyK · 17/09/2008 16:08

"you do not need a dx for a statement"
I was under the impression you had to get a dx first - then you could get a statement!? Will look on ipsea tonight if I get chance, thanks peachy.

Tclanger · 17/09/2008 16:09

This reply has been deleted

Message withdrawn at poster's request.

retiredgoth · 17/09/2008 16:10

.....timely thread.

This is my very question of the day, having seen a Community Paediatrician this morning with my sweetly other-worldly 11 year old.

We received a partial diagnosis of "DAMP" dyspraxia +/- Asperger's, and the information that the waiting list for a multi-disciplinary assessment is one to two YEARS. Is this true? I got the impression that it was a fobbing off measure, to make us disappear without actually refusing assessment....

Is it just a good idea to request a statutory assessment anyway?

I have the pleasure of CAMHS tomorrow, with my feral 9 year old. He is undergoing a statutory assessment requested by his school (having been excluded from one school already) as he is disruptive. They suspect some mixture of ASD, ADHD and ODD.

Such a lot of acronyms, too many for me to cope with I fear.

I worry that my 9 year old will receive assistance because he has been disruptive, whilst my comparatively unobtrusive older child will slip through because he bothers no-one.....

.....Oh. As an aside. Private Ed Psych assessments. How much, and from where?

Original poster

trace2 · 17/09/2008 16:11

thanks peachy i have phoned the nas today they gave me the private number and it could cost £100 to £1000 she said depends on what he needs,

sammyk the doc name they gave me takes them from 6 years as somes older.

twocutedarlings not fare from you and i know rygate we go with dd, but i think we waiting for barnsley cahm where a longggggggg waiting list

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Peachy · 17/09/2008 16:12

sammyk, ds1 has a dx of as/hfa. he had a statement pre-dx. ds3 has been shuttling in the system for a while (was asd, then wasnt, the was again- noew maybe pdd-nos). he didnt start school until he had a 1-1, there was no way.

Peachy · 17/09/2008 16:14

and for everyone- consider a charity such as bibic, brainwave etc. most can help with funding (bibic and brainwave do if needed) and neither need a dx. bibic takes dyslexia upwards.

sarah573 · 17/09/2008 16:16

I looked at getting DS privately DX'd, it came through CAMHS in the end but took us about a year.
I was quoted £1000-£1500 for a private DX when I was looking around. There's a lady called Daphne Keen (you will find her website through google), who is apparently very well respected.

Original poster

trace2 · 17/09/2008 16:30

why does it take so long? we not even got app with cahm yet, we have seen a comuntity pead but he normaly works with under 5s our gp sent us to wrong one but he did say it looked like he had aspergers ! but we have to wait i need to know how to help him i feel for him

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DrHorrible · 17/09/2008 17:15

Trace - you're doing better than mine, mine thinks AS is purely language based and is a moron not very trained in the area.

Original poster

trace2 · 17/09/2008 17:18

DrHorrible when i first went with our concerns it was a locum gp she said ds is dyslexis not AS lol

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Marne · 17/09/2008 17:18

NHS can take along time, we have been waiting just over a year for dd1, she has 2 more asesments before a dx, her next is with the speach therapist and then we will have to wait 3 months before her next apointment.

Im not to bothered as i know dd1 has AS, all the doctors we have seen have told me she shows signs of AS, i don't realy feel i need it in writing as she is getting all the help she needs.

Dd2 is waiting for a dx for autism but as her autism is very noticable ,again i know she is autistic, i would like a dx for her but i know as she is so young they don't like to rush into saying she has autism. Again we have been told by speach therapist and doctors that she is somewhere on the spectrum.

Original poster

trace2 · 17/09/2008 17:22

so who will we see? as i dont think ds needs a salt hes is very good at talking its just understanding what we mean when we talk to him hes v literal talking

OP posts:

Peachy · 17/09/2008 18:24

took 2 years for ds1. ds3 has been i system just over 2 years, we may be close to a dx, we may be miles off.

AS is not language based; the dx descriptions work like this:

AS- no language delays, triad of impairment, normal to high iq

HFA- as above, with language delays

Classic Autism- language delays. triad, low IQ

In r4eality a child with ASD and hfa can be very similar, and so can one with AS. Wich is were the spectrum comnes in. there's a girl with asd at school functions much more highly than DS1, her dx is hfa as she had delays in language as a toddler. Whereas ds1 wqs quite the opposite- conversational at 18 months.

Original poster

trace2 · 17/09/2008 18:40

thanks again peachy, ds is very good at talking infact from a v early age,and he as an hi iQ

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Original poster

trace2 · 17/09/2008 18:43

he dont understand some things like we say wait 2 mins he counts to 120 then says its two mins and carrys on until he gets it

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twocutedarlings · 17/09/2008 19:08

Not 100% on this but i seem to recall that you can now asked to be refered to anywhere in the country, personally in your situation trace i would ask to be refered to who ever has the shortest list.

From reading on here it seems that the best place to be seen at is a CDC rather than CAHMS.

The counting for 2 mins sounds very familiar btw .

Peachy · 18/09/2008 09:25

CDC's seem to be fab. We have neither a cdc nor a cahms- you see a Paed who refers you to each bit separately, seems to triple dx time.

Original poster

trace2 · 18/09/2008 09:41

twocutedarlings so do i go back to gp and ask again? and whats cdc?

OP posts:

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