NO DX!!!

[beverleyjayne]

hi everyone, dont know if anyone will remember me, but here goes anyway. my dd has been going through the dx process since dec 08 and i have been following these forums since then!! dd is 10 years old and fits aspergers in virtually everyway, she hates noise, light, touch of any kind and does not socialise out of school at all. she spends her evenings on her pc or throwing a ball against her bedroom wall! anyway we have been through the ADOS where she failed to take part in any of the activities, ie talking or having an imgination. OT say she deffo has a sensory disorder and SALTs report say she is deffo on ASD spectrum. now we come to the ed phy, she says because she functions in school she is fine! can i just add in here that every morning in our house is a nightmare as dd is extremely school phobic - she hates it, says her friends are different now - i know theyre not, its just she cant really talk to them now iyswim. she hates changing classrooms and doesnt do PE anymore as she hates the rough and tumble and touch, and also not knowing what they will be doing!

we had the multi dis hearing 2 weeks ago and they said as she functions in school that she doesnt have aspergers, but i know that from following threads on here that these children learn to cope in school and save their meltdowns for home! we also recieved the ed phy report on dd and it just like reading a personal attack on me . in it she states that dd says her friend comes down every nite to the house - she doesnt! that i suffered post natal dep so instead she could be suffering from attachment disorder , that as i present as anxious, this is shown in the numerous phone calls i have made to her and other professionals - emm yes as i want help for my daughter and am very worried about her -that i am making her anxious and like this!!!! can i just add here that everything is kept very positive at home and dd in no way knows how worried we are about her!

there is so much more that i could write that was in the report, but i am just glad you have read this far! i am going to write a letter back to the ed pyh stating my thoughts on her report and if anyone has any pointers for that or about dd i would be very grateful

thanks for reading so far

bev

[cornsilk]

How awful for you. What have school said about her then? Did they back you up?

[borderslass]

I had the same problem with my sons psychiatrist who thinks because he interacts with his carers ie us and teachers he is not autistic his teachers have said he fits all the criteria for autism and he is at a autistic school but we are now waiting to have him reassessed next year once he's 16 and no longer under his child psychiatrist.

[beverleyjayne]

thanks for replying, school have said that she is fine , this is after i have to take her in to school every morning,after crying at home for an hour before going!! she has also spent a few days in sickbay as she has just cried all day- she says she wants to cry most days but just holds it in

[cornsilk]

Poor dd.

[BobbingForPeachys]

The NAS has websheets saying that behaviour can be contextual- ie varies in between settings, whoever assessed your dd isn't very up on their ASD frankly! Every lecturer at Uni has mentioned this.

Can you request a referral to a tertiary assessment unit if thee is one in your area? They might not advertise it if there is 9and many out of area ones accept referrals across borders, our does). We didn't find out theere was one in oura rea until a lecturer told us she worked at one.

Other suggestions I would make - either ask Oor a second opnion, or approach BIBIC (they have a website and now apaprently ask just £50- they don't dx but provide lots of answers, paperwork useful for dx procedure, and programmes for moving forwards.

AS a best bet I would pursure BIBIC and a second opinion / tertiary clinic.

We had the lady in from the NICE ASD committee and she was talking about avriable standards in the DX procedure; someone asked 'what if someone is denied a dx when they should be given one'- her reply is that only those who fight the hardest will get a dx in that circumstance and that its very wrong that it should be the way, but very much the case nonetheless.

[mysonben]

Oh dear. I'm so sorry you and your dd have been let down like this. Sometimes these so called experts fail to see the obvious.
What does the ed.psy mean by saying 'she is doing ok at school'? Doing ok in terms of not been a bother to anyone and doing ok academically??? That doesn't mean anything in itself with regards to aspergers does it!

Someone (can't really say who in the open, but let's say that person knows about asd and how the system works) have told us recently it is often the children who have all the behavioural problems (like attacking teacher with a book or biting another kid's ear...) at school, who get the dx and the statements,... The ones like my ds who are placid in their autism often struggle to get dx or adequate support.
Of course we can't generalise this to every child but the scenario is frequent apparently.

I would be so crossed to get'the blame'indirectly for ds'problems!
Yes you should write a letter back to the ed.psy highliting all the bits in the report that are wrong or misleading in any way.
I wasn't aware ed.pshy had their word to say when it comes to giving a dx, i thought they were there fore educational issues and statements only???
Was your dd seen by CAMHS or another multi- dis team?

Excuse my ignorance if i'm wrong about the ed.psy (i'm relatively new to all this and appreciate to be corrected if i'm wrong )

[daisy5678]

Mysonben is totally right - passive children who cause schools few problems have less chance of getting dx or Statemented unless the parents push and push.

I would definitely write a letter to the EP, copying it to everyone involved, refuting the inaccurate bits, re-iterating your aim to get dd some support and explaning what the impact of not getting help would be.

The EP's report should not have affected dx. Who did the ADOS referral - psych or paed? They should be the ones with main final decision on dxing - what did they think after the ADOS?

Good luck - and maybe ask for a second opinion like peachy says.

[debs40]

Givememore and MSB - "passive children who cause schools few problems have less chance of getting dx or Statemented"

I couldn't agree with you more. This is because these professionals consider the problem from their own angle, i.e. how much of a problem is this child causing me rather than how much of a problem is this causing the child.

Totally agree - write back challenging this very factually and do think of asking for a second opinion. There are centres of excellence who will offer this at National Centre for High Functioning Autism

www.ich.ucl.ac.uk/gosh/clinicalservices/autism_services/Homepage

and the Dyscovery Centre

dyscovery.newport.ac.uk/dyscovery/index.aspx

[ICANDOTHAT]

I was under the impression an ed phy could not dx formerly? What about pediatrician or child phy report ?

[BobbingForPeachys]

Also agree about paswsive asd- ds3 until recently was extremely passive; now he is becoming demanding but as long as he didn't kick off in class we were on a loser getting school support with sattementing etc. Luckily we pushed anyway and got him the palce he neded in an SNU but it would be a disaster if he were there the way he is now.

Debs are you using teh dyscovery centre? We ahevn;t looked at it yet but may do, as we used BIBIC when we lived there, but we're in Newport (ish) now.

[BobbingForPeachys]

ICAN, ed psychs shouldn't dx no, a spychiatrist or Doctor can, but you should have medial training.

However some do work in a team setting and a vewry few alone (only one I ever encountered and she was notable within the ASD area) as she passes her findings to a PAed who 'signs off', she said that does happen in some areas.

But I don't trust Ed Psychs, being employed by the LEA can create an agenda. Not always but certainly for 4/5 I have encountered with the boys.

[debs40]

Peachys I'm looking in to an out of area referral there from my GP because the provision for ASD assessment here is c**p.

However, a multi-disciplinary assessment will cost around £3,500 so I'm not sure the PCT will fund it.

They look so good and they will diagnose and supply programmes for school and home. They have educational psychologists, child psychologists, specialist SALT, OT and physion there.

[BobbingForPeachys]

Just looked- there's no way we can afford atm (had to that I didnt know much about them, given as the centre is run by same dept running my MA....!) but some of the days they run such as the transition club would massively benefit ds1 next year so could be really useful.

BIBIC's great but after using them with funding twice, I don't feel I should approach them for help with ds2's dyslexia / dyspraxia stuff. Would be taking the proverbial frankly.

[debs40]

You can always apply for funding through your local PCT. We won't be able to afford it without that either

[BobbingForPeachys]

Having checked my chedule it seems they are coming to Uni next term for a session or two- will corner them and ask them to rate our chances then (don't take on losing battles if i can help it atm).

Thanks for that Debs, really useful.