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Seen the paediatrician yesterday for ds and am cross and v worried...(8 Posts)
ds1 is 3.2 and way behind on language development, and has mild social interaction difficulties also, but no behavioural issues, rigidities etc. In short, we fall into that blurry area between ASD and language disorder.
The dev. paed sees him three times a year, and basically has no clue what to diagnose but feels he needs to diagnose something before ds starts school next year. Yesterday he asked me what I thought it was. I said, semantic pragmatic or HFA, and now am regretting saying anything. The paed wants to set up a team to diagnose it, and I'm worried that I've led them that way without being entirely sure myself. He doesn't want me present at the diagnosis so i have no opportunity to comment on whether ds is behaving typically or not.
I think he thinks I am a bit of a "one" as I've read up on ASD and language disorders so I can have a semi-informed conversation with him and make the most of the precious little time we have to see him. (I don't pretend to be any kind of expert, as obviously I'm not, but neither do I want to be patronised.)
He's totally rubbished my comment that aspartame makes a massive difference to ds1 (it does!!), and has strongly advised against trialling a gluten free diet as in his opinion the Uni of Sunderland work is worthless. He's grudgingly referred me to a dietician to discuss it further, but says in his opinion it makes no difference to children whatsoever. I know from people on here that is not the case.
What to do now? Do I just trust that the rest of the team will know what they're doing, and ds won't be handed a diagnosis that isn't right? Have delayed it all by 3 months to give us time to think it through properly..
I think if it's a team decision, they should be able to give an indication of what dx would best help him get the extra support he needs. 3.2 is young but if he is about 3.6 by the time the assessments are done, then that might help ?
That's what I thought re the age, he's changed so much in the last 3 months that I'm hoping things could move on at a similar rate in the next 3.
In our area a diagnosis of ASD would give him the best chance of a statement, access to Early Bird courses etc if that's what's needed. That might be why they're looking for anything in him that fits ASD (and you do have to look, it isn't immediately apparent I don't think).
If I'm being really honest, part of it might be that I don't want the ASD diagnosis for him. Even though I'm pretty sure it's what he has, and have come to terms with it over the past year, hearing it for definite is going to be pretty tough. I have to get over that one though, and do what's best for him.
Hm - my limited experience is that no definative Dx is given if there is uncertainty such as too early to be sure.
sorry you have been left more worried, not less worried by the appointment. I wouldn't worry about leading the paed towards a dx of ASD - tbh I wonder if the paed was just being polite asking you what you thought, and would have suggested that anyway. Given it's going to be a team diagnosing it, that's likely to be at least 3 professionals, so I wouldn't worry too much about him getting an inaccurate diagnosis. It isn't easy to get an ASD diagnosis by any means - when DS went through joint clinic earlier this year, he didn't get a DX - was told they thought probably not ASD, but wanted to monitor whether his social communication improved as his language improved, so weren't prepared to 100% rule it out.
I am surprised at the suggestion you aren't there at the DX - as at DS's joint clinic the paed took detailed info from me and DH about DS behaviour and general development.
that's what I thought, totalchaos, I don't especially want to be there, but do feel it's important that I can give my input. I can't imagine that ds1 is going to be very expressive in a room full of total strangers, would much rather they observed him in a more familiar environment such as pre-school, where I don't need to be present but he will be more comfortable.
the team clinics vary from area to area - my city was a bit of a value range one - in that it was DS in a room for an hour and half with me, DH and 3 professionals. but other areas set it up more like a toddler group, with kids playing with other children, and being observed over several sessions. ask the paed/his secretary for a contact on the team to talk to about the assessment procedure.
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