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Opinion on wording of ASD dx pls?

16 replies

ARoomSomewhere · 15/08/2018 12:12

We recently got ds' ASD dx letter.

it says:
'dear ds and parents. it was lovely to meet you in clinic today. Having reviewed all the evidence my colleagues have collected, and having met ds myself, i agreed that he is autistic'.
There are then nearly 2 A4 pages of very person centered stuff about how this might affect him. eg:
v good with details / vivid visual memory / needs routine / diffs with social situations / expression blank / eye contact limited / much gesture / language is overformal and monotopic of interest. dont always recognise others / forget names. you wish people could be 'more like computers' and find social situations puzzling long afterwards. Literal. Likes rules. Gets hung up on details. Sensory - dont like getting wet / noise of hairdryer - hygiene is an issue.
High school will be a challenge to adapt to (after a class of 3, whole school of 42). Referral made to sleep clinic'.
it is 'checked electronically but not signed' by Senior Clinical Psychologist Dr X

OP posts:
ARoomSomewhere · 15/08/2018 12:14

actually it gives brief details about how it does affect him.

OP posts:
LightTripper · 15/08/2018 13:11

Sorry if I'm being slow, but I'm not sure what the question is? Are you unsure about next steps or were you hoping for more detail in the Dx report?

Polter · 15/08/2018 13:26

That sounds like an excellent diagnosis letter and report, clear and concise and useful.

ARoomSomewhere · 15/08/2018 17:07

I just wondered if it 'should' contain 'evidence' of tests used etc?

ds will be 14 next month. Is this 'it' now (can it be challenged)??

OP posts:
MyYoniFromHull · 15/08/2018 17:09

The lists of difficulties and symptoms is the evidence which supports the diagnosis.

Who are you concerned will challenge it?

Polter · 15/08/2018 17:16

It sounds fine to me. For ds there's just a letter stating diagnosis as the useful stuff was in the SALT and OT reports. Mine is a letter plus 2 reports, one with ADOS related commentary and a life history.

ARoomSomewhere · 15/08/2018 18:53

I came from my old county.
i'd asked for advice / assessment to help ds when he was younger.
I was refused.
I saw Dr Keen in London and got a 'likely austistic. needs further assess'
Came back and was refeerred to SS for 'potential future emotional abuse' for querying local opinion.
Moved school when ds was 11. School referred within a term.
Just got dx.
School now shut.
Would like to go 'home'.
Mentioned it to old GP and was told 'not how we dx around here, so you need to speak to someone as probably not accepted'

OP posts:
Ellie1005 · 15/08/2018 20:25

I've always assumed that dx reports and letters come in many different forms, depending on who, where, etc.

Don't mean to hijack thread, but hopefully this will be useful to OP too - on subject of dx reports, is it usual not to get that much info about ADOS scoring? My DS report states the two different scores, plus the combined score, but there isn't a detailed breakdown of the activities per section to explain why he scored as such, more like an overall paragraph explaining. Does this sound standard, or have other people received a detailed ADOS report?

BlankTimes · 15/08/2018 20:26

I think you need to sit down and work out what's best for your son for his secondary education.

IF you relocate back "home" you will be constantly dealing with all the people who have been so obstructive to you all his school life. They are not going to change their ways.

You've taken him out of that system, you've moved, you've obtained a valid clinical diagnosis for him.

What you want to do is to go home, wave his diagnosis at them and demand the education he should have with all the necessary interventions mentioned in his report - and after all the hassle you've had, I don't blame you. Stick them all with a big fat Up Yours and make them do what they should have been doing in the first place because you're right and they were very wrong. I'd want to do that too, I feel righteous anger on your behalf.

However, the GP in that area has already as good as told you that his diagnosis may not be accepted by whoever "accepts" diagnoses there.

That means at the very least you have to find out who that organisation is - school, their equivalent of LEA or more likely a combination of people who all know each other and socialise together so professional boundaries can become blurred.

Don't forget the fact you've already been accused of "potential future emotional abuse" for questioning that your son is not NT and already had SS to deal with over that. I'd want to know if they could escalate that.

For reasons I cannot fathom, the people who should accept your son's diagnosis are already putting more obstacles in your way and questioning it.

As I see it, you have two choices

  1. Get legal representation to prove your son's diagnosis is valid and have him taught in a school at "home". The only flaw with this is do you know if the people who have so far denied he has ASD and caused SS etc. have any influence at the school he would attend? I know it shouldn't happen, but you have enough prior evidence from his schooling there to wonder about continuing.

Unfortunately even with a valid diagnosis and a list of things your child needs help with, some schools are really rubbish at provision.
That's evidenced by post after post on these boards.

  1. He's 14 now, could you not find a good school in your new area for him that will take his diagnosis at face value and also provide the interventions he needs for learning to GCSE and further Ed, so he could just attend a new school and have none of the "home" people interfering, until he's finished his secondary education?

It's up to you how much more you want to fight for what should be provided for your son. If you go "home" will there be so many more obstacles in your path that you'll spend so long fighting for what he needs, by the time that's resolved he could have left school but had no help whatsoever and not reached his full potential.

Only you know the full situation, all I can advise is that you drop the feeling of being right (you are, we all know that) and focus on what action now will provide the best education for your son.

Polter · 15/08/2018 20:42

Ellie my own had a narrative account which aligned to the different ADOS tasks, but I had to ask separately for the score (I needed it to participate in some research).

ARoom I think you'd have to be utterly bonkers to go back.

BlankTimes · 15/08/2018 20:44

ARoom I think you'd have to be utterly bonkers to go back

Polter said it so much more succinctly than me Grin

ARoomSomewhere · 15/08/2018 21:02

*BlankTimes&

Thank you for such a detailed post - it's very helpful.

It's not so much i want to go 'home' and i certainly don't want to wave it in their face - i think that would only make them more vicious. I dont know why they were so vile (but interestingly i met a woman at my first local NAS meeting who came from my old area. they'd done exactly the same to her (same 'professionals' even) and she has 4 kids, all 4 of whom have a dx and some have more than one)!!!

but i have a house there i cant sell (been on market for 2 years, only way to get rid quick would involve negative equity) and this new area is more expensive and i could never buy here. The only avail HIgh School here is an Academy in special measures. They are getting a new Senco who ive not yet met. But ds wants to go there. HIs 2 best friends are going there. Its small (500 kids) and ds would be a tall poppy there.

I am awre that even if old area paid lip service to DX, they dont have to 'do anything' to support him. Ironically old area High Skl known for good SEN support but only if your 'face fits'. Our card is probably still 'marked'. I think they know they did wrong - they never sent either of my kids sets of school records on. Even if they left me alone about my older one, they could start about my younger one.

I should feel 'safe' now. Acutally I wont feel safe until they've left school i think :(

Only other (slightly desperate) option is to start our new school. Let them settle a bit (dd just been referred too...) and then i could, in theory move back to old house. Its a 40m drive away (im a 20m drive away now). I'd be prepared to do that. then i have housing and ok enough (hopefully) schooling and a dx that shouldn't be questioned in this county.

OP posts:
BlankTimes · 15/08/2018 23:39

I wouldn't worry about the school being in Special Measures, with only 500 pupils and the new staff having to be seen to be good, it's the best time to start because everyone will be doing their best to be top notch.

Could you rent your house out at 'home' ? Would holiday letting be appropriate?
I'm not in a touristy or pretty area at all but holiday lets seem to be doing very well simply because they are somewhere out of touristy areas. As long as you're getting as much as you're paying to live in the new place, it could work well until the kids are through school.

If you're thinking of commuting from the old house at 'home' to school where you are now after they have settled in, it's better to look at it in the amount of time it takes, rather than how far away it is.
My school run was an hour, 25 miles each way, but a lot of that was through city traffic.

You've got a lot of decisions to make and not that much time to do them in, but I'm sure as long as you can see all of your options, something will be absolutely the right choice for all of you.

For the future, when you're sorted and everything's going okay, you could get together with the other Mum whose 4 children have been treated just the same as yours, then make enquiries discreetly to see about any others and take the evidence to someone who could stop this happening to other families or a newspaper

BlankTimes · 15/08/2018 23:59

This thread may be interesting for you, at least you can see other people have been treated badly too.
www.mumsnet.com/Talk/am_i_being_unreasonable/3337060-Email-from-school-that-I-probably-wasnt-supposed-to-see-f-king-livid?pg=1

LightTripper · 16/08/2018 09:31

Maybe this blog post too...

twitter.com/QLMentoring/status/1028573560682545153

Depressing though isn't it?

tartanterror · 16/08/2018 22:11

Your GP has nothing to do with it any more as with a DX letter it will all be dealt with at school. So school choice is key especially for high school. Download the SEN policies now and Call all the SENCOs at the various seconds options once term starts. Is there a school worth moving back for? Speak to the LA SEN team and discuss which schools might suit your son best. Visit. You had a terrible time previously but it needn’t be that wa this time as the people who blocked the DX will not be involved this time. Best of luck

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