Paed just told me they won't assess ds for autism because........(and ABA)

[AngryWasp]

I got a private dx. I told her I wanted the full disciplinary because I never want it to be held against me that ds didn't have one, but she told me that the MAA is a diagnostic process and he has already been diagnosed.

I'm in tears, but do I really not have any need to worry?

I thought I would need a LA Multi assessment if I have any chance of fighting for ABA?

He was due to have this on 21st September but it looks like all it will be is the second Team around the Child meeting (the first one was more like 'working around the team', - or 'team working around the parents'.

Can anyone suggest what to do now, or reassure. Many TIA.

[WetAugust]

Hi Jen,

CAMHS have the psychologists and psychiatrists that can make a formal ASD dx. A Paed is just a generalist - a GP for children if you like.

OT - Occuptaional therapy/ist

LA - Local Authority

LEA - Local Education Authority (now just LA)

ABA - Applied Behavioral Analysis ( a theraputic treatment)

CDAC - not sure of this one

CoP - this is the SEN COP - Special educational Needs Code of Practice which is the LA's 'bible' on how to support SENs. You really should get yourself a copy as it explains what you should receive and how school / LA should be managing matters. You can get a free copy from the Dept of Ed (see their website - Publications). It expalins fully how the system works.

MAA - Multi-Agency assessment i.e. school, social worker, Educational Psychogist, CAMHS, SALT, Community Paed - everyone (inclduing YOU) who is involved with your child.

Not surprised you've waited so long for CAMHS - in some parts of the country the waiting list is interminable! Too much demand - too little resource. You need to keep on at them - ringing them daily if necessary - and get yourself to the head of that queue otherwise you'll have a long wait.

Nothing comes automatically - you have to pester until they are sick of you.

Best wishes

[jenthewren]

Just posted, but forgot to mention DS was seeing Speech and Language until 6 months ago when they discharged him. Plus can anyone explain the following abbreviations for me (am struggling to 'keep up'!!)
'OT', 'LA' (is that Local Authority?) 'ABA', 'CDAC', 'CoP', 'MAA'?

Reading through everything it seems like I'm going to hve a real battle ahead of me. Am I to assume that the Local Authority have a large part to play in the whole process, what exactly do they do?

I'm sorry for sounding stupid, I really just want to try and understand what's going on....

Hope someone can help.....

[jenthewren]

Have been following this thread as I'm at the very beginning of looking fr Dx for DS. DS has been seeing peads for over 3 years, since he was 18months, for global developmental delay amongst other things. They're now concerned he's definately got OCD and showing strong signs of ASD but have refered to CAMHS for diagnosis. This was over 6 months ago and although hve chased twice still heard nothing. Am becoming increasingly frustrated and whether or not Ds is DX with ASD or not am struggling to cope with his behaviour (have 3 other children) and now don't know which way to turn. Is this happening the way it should be......?

[WetAugust]

We followed up our private dx with a couple of NHS ones. A lot of people have said that private dxs are not always acceptable to the LA - I never experienced that and I would challenge any LA that refused to accept a private dx - but having your Paed reiterate it covers all bases.

With huge and sincere apologies to mooondog I found SALT to be a comple waste of time, but this was in the dark ages when SALTs had no input whatsoever into dxs of Aspergers / ASDs.

Son only went every month for about half an hour, was encouraged to try to sound the letter 's' a few times, rewarded each time he tried and then we went home to forget all about it until the next month's visit.

Result - zero improvment and a 21 year old who still talks with a lisp. However as I said, those were the dark ages and things have probbaly moved on considerably with regard to the usefulness of SALT.

I do recognise the patronsing behaviour you're experiencing. We parents are really not supposed to have researched anything about our children's conditions, are definitely not supposed to voice our opinions and challenging anything they tell us is a capital offence - no matter how baltently stupid the tosser professional advice is.

Hang on in there

[WetAugust]

Great news - every dx helps. Another victory for the Waspie / Star thingy person

I also imagine a world of free time - hasn't yet happened. in this world I take up oil painting, gardening, reading.......

My next big benefits battle starts this November - am in training already

[AngryWasp]

Nah, - I'm just cross, and imagining a new world of free time when I have won this battle. I kind of feel I should have a battle 2 to be getting on with, - but I guess in reality, I will.

By the way, I sent an email to the Paed confirming that I understood all her reasons for not wanting to do a CDAC now, and then listed my reasons why she should do it anyway and guess what? She agreed to go ahead with it after all.

YAY!

She HAS been blardy fab though and I absolutely agree that it will be a waste of her time, but I need senior people to write down what we know as parents because the deliverers on the ground just aren't listening.

[WetAugust]

"After I've won the ABA, can I take the LA to court for negligence, incompetence, deliberate time wasting and delaying and therefore my loss of earnings because I can't work whilst I run the whole show myself"

No - you can only report these matters to the Local Government Ombudsmna for an ivestigation into whether the LA is guilty of maladministration. If you win you'll be lucky to get anything (I got £250).

If you want to sue the LA you have to prove their negligence resulted in a personal injury (have done that too ).

[lingle]

A shame moondog is engaged.

No don't sue when this is over (just for once I'm speaking from experience here). Celebrate the day when these people no longer live in your head and forget all about them.

"Write the judge's judgment for him" is what they used to teach me on advocacy courses. Assume ignorance and act as if you were something like a magistrate's clerk, taking them through the principles they ought to know.

Good luck.

[AngryWasp]

After I've won the ABA, can I take the LA to court for negligence, incompetence, deliberate time wasting and delaying and therefore my loss of earnings because I can't work whilst I run the whole show myself?

[moondog]

I'll be at my desk [but with you in spirit].
I quite like Shredded Wheat though!

I'd think twice about your father if he is going to get long winded and ramble.
MW woman sounds promising...

What is vital is for it not to ramble.
You need to come out with definite plan of action not more vague crap about 'best interests of your son' and so on.

[I'd bloody love a job representing parents at meetings like these.]

Using CoP very effective.As I've said before, I created a documnet in which I took out relevant bits of CoP and then provided concrete examples of how they had not adhered to it.

Very effective because they knew and could see I was right and using criteria to which they themselves had agreed to work. [What is interesting in retrospect was to realise that very few of th people I was challenging had in fact read CoP or were even aware of basic legal requirement and criterai of a statement. [Not that i really blame thrm, thry don't have time to leaf through the mountains of paper]. However, having knowledge of them yourself puts you at a distinct advantage. I came to enjoy that flicker of panic in a government drone's eyes when I began with

'You are no doubt aware that Section 2:3 of the CoP states explicitly that.....'

[WetAugust]

Oh well - just take godmother then and if challenged tell them she's your lesbian lover

[AngryWasp]

I doubt Moondog fancies a Monday morning in Welwyn Garden City. It's where they make Shredded Wheat you know! The whole place stinks of it!

[AngryWasp]

Problem is he tends to stray off topic and challenge 'everything' that is ambiguous rather than be focussed on sorting the details of what is important.

He'll also tell them repeatively that he is deaf and dyslexic so can they repeat everything very loudly and talk very slowly because it will take him half an hour to note each sentence. He'll miss-hear things on purpose to make his point and quote the disability discrimination act if they dare to wrap up before they have cleared up everything.

He's an awkward begger!

Perhaps it could work though, - although I have to say it will drive ME nuts too!

[lingle]

Take moondog!

[WetAugust]

He He [Grin] For my money - defo your father. The more they look like solicitor / consultant / advisor etc the better. And of the 3 he alone has a reasonable right to be there (godmother may be a bit tenuous if the LA come sticky).

Plus if he was a teacher trainer he is proably fluent in edu-speak (the language of the LA).

What job title will you use - familial consultant? - sounds vauge but quite accurate in teh circumatnaces and the LA would probably mis-read it as Family Consultant anyway Oooh - I love it when you get one over on the bastards LA

[AngryWasp]

I've been straining my brain trying to think of who to take. Now there are 3 options.

1)My dad, 63 - who used to be a primary teacher trainer but is now a freelance consultant with a fluid job title. We could come up with one and he will make a business card. He's a very creative but logical thinker and will make the whole meeting last a fortnight challenging every single detail until it is completely exhausted and everyone in the room is too.

2)DS's Godmother, 43, an gingerhaired Irish Woman, well dressed and Master of Wine.

3)DH's Professor colleague (engineering) who is extremely scary both in looks and in manner but she will turn up to the meeting late and cross.

[WetAugust]

LOL @ moondog's advice re taking someone else to the meeting - absolutely spot on!

I took DS's current step-mother who performed her role exactly as Moondog suggested - however the LA would not commence the meeting until they has established that she had an "interest" in DS - so I had to state her relationship. However she did take copious notes and you could tell it was unnerving them .

Also quoting chapter and verse of the SEN COP to them is good.

[WetAugust]

Hi

Tribunal decisions are a great way of understanding what you need to prove to win your case. I call it 'working backwards' from the decision to evidence-gathering that should lead to the same decision.

You can also see the Commissioners decisions for DLA cases too - which helps if you need to win a DLA Tribunal.

I didn't know anything about ABA until I googled it last night. Wow! It sounds intensive

Best wishes

[AngryWasp]

okay, - think it is a time-out problem because my computer AND internet are so slow. Getting intermittent information.

Thanks. It is very helpful, but also a bit scary. Still, I can see why some decisions didn't go in favour of the parents and can hopefully guard against them.

I realise I need to find out more about TEACHH and pull it to shreds. Like the cases that seemed to have won, my ds will probably be offered TEACHH delivered by an untrained TA who is visited once a term by a 'specialist'.

[daisy5678]

Right - www.sendist.gov.uk

then click on the decisions button at the top of the page

then on the 'school type' menu just click on homebased

then click 'search decisions'

have just tested all that and got 2 pages, going from 200-2003.

There isn't much on there for anything except disability discrimination after that and some are mis-labelled but you will find a couple of golden cases to help if you look hard enough! Don't think the year matters, tbh; the law and principles behind it haven't changed much at all and it will scare the shit out of the LA to be presented with similar cases that won.

[AngryWasp]

thanks but still not getting anything after 2002!

[daisy5678]

Don't put in dates - just do key words or type of school.

[AngryWasp]

can't find any decisions at all after early 2002