What happens if a diagnosis changes

[Eveiebaby]

DD is statmented at the moment for almost full time 1:1 (she is 4.3 has a diagnosis of ASD). At paed review a couple of months ago he was reluctant to sign diagnosis off as final and asked to see DD in 6 months time. He suggested her difficulties may be more speech specific rather than ASD.
I was wondering does anybody know what would happen to her statemented hours if her diagnosis was changed to a speech/language disorder. Personally I am thinking that her hours of 1:1 help would decrease dramatically - does anybody have any experience of a changed diagnosis?

My DD is a similar age with a similar dx...and speech problems. We saw our Psychologist today for finalising dx...she said if we make significant progress with speech DD may have her dx changed from ASD to AS. Either way she still has an ASD but the speech effects her schooling more.

We dont have a statement yet or any 1:1 but it was my understanding that the statement is based on the childs needs and not the diagnosis. I thought it couldnt be changed until its due for review? Plus she would still require 1:1...if not more so...with a speech disorder as it inhibits her understanding in the classroom.

...did you have another thread about other DCs using her 1:1?? I think this is only ok if its not during your DDs statemented 26 hours?...I would complain to your SENco as the funding is for your DD not others.

Im new to all this but that was my general knowledge on the subject....feel free to correct me! :)

Hope that helps!

I have just started training with parent partnership, and what I have found is that a statement is about learning needs and not dx. Saying that some LA's do try it on. If you DD needs 1:1 then she needs it full stop, dx or not.

Isn't a statement based on need rather than diagnosis? (I'm totally clueless here so it's an honest question).

We're in the same position btw seeing the again paed next months wrt their new theory that it is primarily a speech disorder rather than ASD (ds' diagnosis us currently ASD and Speech Delay/Disorder )

Thanks for all your replies

Yes you are absolutely right needs should be what determines a statement but I think it does vary depending on what area you live in. DD's school have been great - they initiated the statement but only once we had an official diagnosis before that their attitude was kind of wait and see. So I am a bit concerned that if diagnosis was to change I would not have as much buy in for support from them but I suppose that is something I will just have to wait and see about.
Phlebas - yes exactly same situation with my DD who has a current diagnosis of ASD. Paed is now implying her difficulties may be more speech and language related as to be honest we do not have any behavioural issues with other (other than those of a typical 4 year old)!

Woolytree - DD is just four and a statment review is done every six months up until they reach the age of five so she will be due for a renewal next March. Thanks for your comments about 1:1 but from responses on my other thread I think 1:1 can be shared.

Thanks jjones I totally agree. The thing is I do think LA have been generous with DD's hours so I suppose if school thinks this too (not sure if they do or not but from their current actions seems like they may) they will use 1:1 for other children.

Evie, is the paed offering/suggesting more assessment or just more wait & see?

I'm in turmoil (again - need an eye roll smiley) about the whole thing. We didn't want a diagnosis in the first place (taking a Lingle approach) - it was thrown at us by a paed who didn't listen to a word we said. There was no multidisciplinary or formalised assessment (she based diagnosis on BIBIC report only!), and even then we came out with a dual diagnosis (which was final not provisional). I have never been totally convinced about the ASD part but had begun to accept it on the basis that I agreed he did have some impairments in all three parts of triad.

Anyway our private SALT doesn't support the ASD diagnosis, NHS SALT says he's 'atypical', CAMHs psych says he's extremely high functioning despite severe language disorder (they used to call it a delay ) and with the exception of language his impairments aren't significant. Our ABA people are totally perplexed by the diagnosis. The better his language becomes the more NT he appears & the improvements are coming really quickly atm. We don't have any behavioural issues, no secondary features (he doesn't stim, no sensory issues, not rigid wrt routine etc) but he still isn't potty trained (he's 3.11), doesn't sleep & has restricted diet.

And on top of all of that I think what is the point of going through the diagnosis again - we get SALT but that's all, if they removed it it would be no loss. I don't want to drag him around being assessed - I'm thinking of telling paed we'll come back in a year when the ABA is (hopefully) wrapped up & see if they can put together a decent argument for jumping through hoops.

incredibly - we haven't run a typical programme (no DTT etc) but all teaching is based on ABA principles. He was mute (we'd get maybe 10 words in a week though & most of the time he'd be silent) until late Dec/Jan last year. We trained the team in signing because we didn't anticipate any rapid improvement in speech - he's very close to bottom end of normal for expressive now. His independent play, which was very limited, is now age appropriate. His anxiety/phobias have disappeared, he's really happy & his confidence is growing all the time (this has been a huge issue) - social skills are not typical yet but are pretty good with older children & adults. He is spontaneous in his interactions & has great shared attention, he enjoys including others in his experiences. He can cope with demands being placed upon him (psych had considered PDA & ODD because he was so demand avoidant), although we're always working on compliance issues. Academically he doing what a NT 4yo should be doing. I can't imagine child with any diagnosis/or not that wouldn't benefit from that sort of intensity & focused/individualised attention though.

There is more incidental learning going on all the time & progress through the programmes is accelerating (partly developmental & partly because we're doing more hours now). It's been good (understatement) & we're all a bit shocked at how well he's done - the NHS/LA people certainly didn't anticipate a fraction of the progress he's made. I'm sure the language issues will be ongoing for a long time though - we running into lots of sequencing issues atm.

Your situation is incredibly interesting Phlebas

We took DD for review and paed said that before we came he was going to sign DD off (I assume he meant DD was ASD as he had previously diagnosed and he didn't need to see her again). We were in his office for about 20 mins and I think from the way DD acted he seemed to have second thoughts. We gave her lots of instructions to follow which she was able to and she fully understood what was going on - she was weighed, measured etc... We also have very few behavioural issues with her - she can be slighly defiant but no more than an NT child her age in my opinion and she will usually do as we say in the end . Again like yourself we have issues with toilet training and food. So paed just said "I would like to see her again in 6 months".

Language, pretend play have massively improved over last few months.
DD used to have problems with some people it was a bit random really - some strangers she would scream at but this all seems to have disappeared. Her shared attention and interactions are good.

Her problems are still speech, mainly expressive which is still not age appropriate and interaction with her peers.

Your DS sounds so similar to my DD it is spooky!

I was just wondering you said you only get SALT at the moment - will he have a statement for when he starts school?

this is v. interesting, my DS is 6.5, but when he was younger (3 ish) he was very like phlebas had previously described her DS at that age (except DS had more echolalia and a lot less avoidance). After a rather brief (1.5 hour) multidiscplinary, I was verbally told - probably not ASD, just language problem, and written dx was language delay with subtle social communication difficulties. at 6.5 my DS's language, concentration, play are much improved (still not quite age appropriate IMO, but testing within normal range on SALT assessment, so discharged from SALT. He has no support whatsoever now, is doing fine academically.

sorry, I don't feel this is much relevance to your post, but interesting to see similar kids to my DS.

I find it really interesting too.

I wonder that if the initial assessment of ds had been worth the paper it was written on the diagnosis may have been different. I had an interesting discussion with my ABA consultant today where he said he has seen a massive increase in the number of children who present very similarly to my ds being given a diagnosis of ASD - that didn't happen 10 or even 5 years ago. His current case load is approx 50% children with ASD who do no present as classically autistic, even at the high functioning end of the scale - their issues being primarily language & confidence. I think the entire diagnostic process is bogus tbh - I'm really trying not to get caught up in it again - I suspect when we go back they'll say oh no it's AS now ... though I'm not even sure that exists as a diagnosis any more

We home educate, so decided not to go down the statement route - it would've required some compromises we weren't prepared to make to stand a chance of getting the ABA funded & there was huge pressure to get ds into a special school asap.

Thanks Total - no I feel it is very relevant I am always interested in hearing about children and their development especially where language issues are concerned.

The diagnostic process does concern me - in DD's case everything happened so fast. She was observed by early years at playgroup, seen by PAed and SLT for about 30 mins whilst they asked us questions about her history, 5 x 30mins sessions with SLT plus observed at playgroup with Paed and SLT for I would guess about 1 hr. It seems to me like no other diagnosis was even considered it was just as though they lump all children with language and social delays/difficulties into an ASD catergory on the basis that it is a large spectrum.

Anyway, I'm not complaining too much at the moment as she has received lots of extra help at her nursery school and she has a statement for reception. I took the diagnosis because I could agree that she has language disorder and social difficulties with her peers primarily initiating a conversation with them. Whether this will resolve or not I do not know I am thinking this year in reception will be her make or break year.

I also accepted the diagnosis because I want her to get help at school which I'm not totally confident would have been forthcoming without a diagnosis. I may be incredibly stupid but my attitude is if it is ASD it will not go away and the sooner DD gets help the better. If it is not ASD then her difficulties should resolve over time and I can have the diagnosis removed. It is hard to tell with her being only 4.3 at the moment.