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Different dx = different or more help???

(15 Posts)
WilsonFrickett Thu 13-Mar-14 19:00:52

Well, despite my resolve to simply enjoy WilsonJr this year without getting into any bunfights with anyone, here I am again, post parent night, with a plea for help.

DS has a dx of Social communication disorder, profile shape is typically autistic but he just didn't score 'high' enough in ADOS to qualify for ASD. And we're in Scotland, for background.

DS8 has had an excellent teacher this year, who has been confident enough in her own abilities to say 'hang on a minute, this child isn't reaching his potential.' Refreshing to get a bit of honesty out of school and tbh it has really transformed our relationship for the better, feel that there's so much more honesty on both sides.

To help support DS/teach the EP was called in. Fart in a wetsuit, but never mind. When she called me to feedback her main suggestion was I referred him for a diagnosis. When I pointed out he already had one, she was a bit wet fish face. I - pointedly - said DS already has a diagnosis; did she feel however there would be significantly more (or different) support available to him if he had a different diagnosis? Was that what she was saying? She said it was not, so we left it at that.

Then followed up with HT she felt pursuing re-DX could also be helpful, as when he got to secondary it may help get specific support, for eg more time or a scribe during exams if needed. Parents night tonight, and the class teacher also repeated this view that there would be ‘better’ support for her if he had another (presumably more severe) diagnosis. So this idea that he needs to be reDXed is gaining traction.

But our LA's policy is every child should have the support it needs regardless of dx. And I don't think if DS presented with an ASD label (for want of a better word) that there would suddenly be tons more support and help, I think we'd be in exactly the same position.

What do you think, wise ones? Is there any mileage in reDX (it's 50/50 his dx wouldn't even change and there's 6 months out of my life waiting for it!)

Do school genuinely believe they'd get 'more' if he was 'more severe'? Is that how it works, really? Or would they still be <puzzled face> and nothing would really change.

Are they just putting me in a holding pattern?

Can someone help me unpick this please?

PolterGoose Thu 13-Mar-14 19:51:36

Message withdrawn at poster's request.

radioison Thu 13-Mar-14 20:22:37

Does he have a statement?

I think that with a diagnosis of ASC+statement in reality you can get more help than with a diagnosis of social communication disorder+statement

Is there a secondary school that you had in mind? What about going to talk to the SENCO there and see what is said? If the feeling is that it is secondary that they are worried about.

[If they think that it is more help at primary stage that is needed then what help do they think he needs and will they help you get it - are things you could ask them]

PolterGoose Thu 13-Mar-14 20:30:40

Message withdrawn at poster's request.

zzzzz Thu 13-Mar-14 20:47:42

I think it's a red herring. I've been thinking back and an enormous amount of meeting time has been spent discussing possible dx for my ds1. It's ridiculous. I think revisiting dx would probably be helpful if you think he really has ASD, but I would practice shutting down these speculative discussions.

WilsonFrickett Thu 13-Mar-14 20:49:58

I'm confident he does have an ASD, but tbh I consider SCD to be on the spectrum albeit on the high-functioning end. Interestingly though, I don't know if I have formed this opinion independently or by observing DS and thinking, nah chum, that's ASD. And then someone linked to a dyspraxia dx the other day and I was 'oh, hiya DS, there you are!'

Such overlaps and co-morbidities...

I suppose my overall issue is if he needs the help, give him the help. The dx in that context doesn't matter. That's the philosophy behind the whole system in Scotland/here - and I'm actually checking the legal position too.

But I guess I have to put that to one side and say 'what will help DS most.'

OTOH what if he is reassessed and has the same dx - basically three people have now said 'oh yeah, more support, he'll need that' but if he needs it, then he needs it no matter what the dx says...


PolterGoose Thu 13-Mar-14 20:51:52

Message withdrawn at poster's request.

WilsonFrickett Thu 13-Mar-14 20:55:01

That's a good question Polter. I honestly don't know. I suspect he'll be more 'protected' by a more widely-known/accepted dx. I know some quarters view SCD as 'autism-lite' and his difficulties are very real and continuing.

I guess that answers the question then?

PolterGoose Thu 13-Mar-14 21:03:31

Message withdrawn at poster's request.

WilsonFrickett Thu 13-Mar-14 23:44:55

But we wanted a year off <pouty face>

zzzzz Fri 14-Mar-14 02:50:36

Oh have a year off grin if the dx is primarily for when he is older a year won't change anything.

I'm really hacked off by the cherry picking of dx to access support. My peadiatrician is quite firm that dx is to help the patient in this way. I personally don't think we are helping at all by making it impossible to identify the different conditions. How are we ever going to collect any real data or come to any true understanding of what helps? <sorry I will get off my soap box>

WilsonFrickett Fri 14-Mar-14 07:47:24

To be fair, by the time I get the comm pead referral in, then the comms clinic, then ADOS it will be a year grin

I'm hacked too. And have no doubt DS will be in exactly the same position support-wise, no matter what the dx says.

TheLightPassenger Fri 14-Mar-14 08:04:51

I think you are better off revisiting dx now, when school and ed psy are supportive and you are fairly relaxed about it, and it might help with secondary and adult life etc. I completely get why you and zzzz are cheesed off with the idea of having to seek dx for tactical reasons and possibly illusory increase in help but i think polter makes a good point re identity

Ineedmorepatience Fri 14-Mar-14 08:10:10

I agree with what you are saying about co morbids wilson.

Dd3 now has so many dx's after my attempts to un pick her difficulties that I now dont know which way to turn.

One thing about the Asd dx is that generally people have a vague understanding of what it is!!

Not that that is always helpful, tbh.

Sorry to seem negative but my general feeling about school people at the moment is, if you are lucky and get a good one you are in for a quieter year. If you are unlucky!!! You might as well write the year off.

An indie SALT told me the other day that it will get worse in secondary sad

Oh joy sad

I would get your referral in and continue with your year out.

Good luck smile

WilsonFrickett Fri 14-Mar-14 17:02:11

Thanks all. I am waiting on the comm pead referral, she will have to refer me to the comms clinic I think as DS isn't clear cut so I will let that quietly trundle on and resist the urge to spank school's bottom. For now.

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