A kind of diagnosis
Posted by
bumblebee
on 2nd September 2010
at 16:10
Hi Mel,
I can see that it wasnt what you hoped for and not the best outcome for you, but I guess its a good thing in the sense that he and the other people working with him know what his difficulties are so they can help him...It is really hard at 2 to see how they will progress.
My youngest Jack who is 5 now had hardly any words at all when he was 2. He was having absences and appeared to be quite classically autistic...over the last few years, his language has grown massively and is almost within normal limits, he has learned to read, write, his self-help skills have taken off and he is clearly a very able little man! I can see where the Doc is coming from but to be honest, I think Jacks diagnosis may be changed from ASD to Aspergers as he gets older, but to me that's irrelevant, the important thing is that people working with him know he has autism....I felt it was better to know age 2 so I could get my head straight and start making plans.....Even though you know what it is, its hard to fully accept and move on until they have that formal diagnosis so I do feel for you....Do you need the diagnosis before you can look into educational provision or get support from SLT or OT etc?
Claire - Community Champion
Posted by
demipowell
on 3rd September 2010
at 19:30
Yeah Claire now I think about it, Matt was completely non-verbal at two and he couldnt walk either. He screamed for hours on end and had lots of investigations for epilepsy after having seizures and absences. Now I'd be taking a guess at him having Aspergers or Development Coordination Disorder. He is mainstream (for now) with no support assistant. I never thought of it like that before.
Its good they've said they'll look at it at three. I was told 5 for classic and 7 for Aspergers. We've half a promise they'll refer Matt for diagnosis next year. So we'll wait like you will I guess.
Demi
Posted by
Leanne
on 4th September 2010
at 04:23
Hi Mel,
I have just re read your post and the paed's reason for not diagnosing makes no sense to me.. what would be the issue in diagnosing Luke where he is now and then re-diagnosing when he needs it. It is not as though it is a fixed thing anyway.. if he is more classically autistic now then he should be getting the intervention and support for that, if when he gets older things change, then they change.
More and more research is showing that early intervention is the key but how people can intervene early if the 'experts ' are refusing to diagnose until they are 5 or 7 is beyond me.
Leanne - Community Champion
Posted by
Mel C
on 4th September 2010
at 14:31
Hi all,
I am frustrated with his reasoning as I assume he could improve at any time, they might diagnose him at 3 and then he progresses really well at school and they might think the diagnosis needs to change anyway.
Claire, he is getting services, mainly portage, seen SLT and OT once and hes being considered for an early resource nursery place so he doesnt need a diagnosis to access these things. But as you said as a parent you need the actual diagnosis to accept things and move on.
Demi, I would hate to wait till hes 5 so I definately hope this isnt the case, its good to hear that kids who are non-verbal ( as Luke is at the moment) when very young, do progress well.
Leanne, I totally agree...dont really see the problem with changing the diagnosis as and when it needs it, I think he thinks because we have portage etc they are working with him anyway and a diagnosis wouldnt change that.
The only comfort is he did admit he thinks it is autism so at least I know they are thinking the same as us.
Mel x
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Posted by
Mel C
on 2nd September 2010
at 15:56
Hi all
We went to see the paed again this morning and unfortunately he wont be referring Luke for diagnosis until hes closer to 3, which seen as Luke has just turned 2 is not really what I was hoping for.
He did however when pushed a little, ( I know this dr well as he has been involved with my daughter for 8 years) say that everyone who works with him is of the same conclusion that Luke has a communication development disorder and are treating and working with him as such.
He even admitted that if he were to give his diagnosis now it would be classic autism!
So I asked if its so obvious to me, to him, to everyone who works with Luke, why delay diagnosis? He said its because until hes older and maybe his communication skills and learning develop it would be hard to tell where to put him on the spectrum and if he was diagnosed now, it might not be right and need to be repeated.
So although its not quite what I wanted it is a diagnosis in a way I guess.
Not quite sure how I feel about it all.
Mel x