A dilemma - Should I push for a diagnosis if ds2 is already getting extra help?

[coppertop]

Any opinions would be welcome on this one.
For anyone who doesn't know the background, ds2 was given a provisional dx of ASD/AS by the Paed just over a year ago (not long before his 2nd birthday). This was followed a couple of months later by a full multi-disciplinary assessment where the Paed eventually concluded that ds2 has all the traits of ASD/AS but that he didn't want to give a full dx until ds2 was 3.
At ds2's first IDP meeting after the assessment the SALT, Child Psych, OT etc were so convinced that the dx had been given (as the Paed had spent so long talking about how ds2 fit all the criteria) that they actually halted the meeting for a few minutes while they went back to check the file. They were shocked when they saw that the Paed hadn't actually given a written dx.
Ds2's portage worker is annoyed by the Paed's 'on the fence' attitude and has told me (without naming names or any details) that the Paed has done a similar thing to other families wrt all kinds of SN. In contrast to this the other Paed at the CDC (who dx'ed ds1 a couple of years ago) is very direct and will always give a straight answer.
In the meantime ds2 has been getting a lot of help. His pre-school has been awarded extra funding to provide help when needed. Ds2 doesn't need a fulltime 1:1 but has several 'flashpoints' where he needs to be re-directed, shown PECS symbols etc. He has SALT once a month and is making good progress there. He also has regular IDP/IEP meetings where achievable targets are set. He also has help from the portage service every 2 weeks.
As ds2's 3rd birthday is only a few weeks away now he was given an appointment to see the Paed just before Christmas. We discussed ds2's difficulties, needs and progress. The Paed offered us melatonin to help with ds2's inability to get to sleep. He spent a lot of the appointment making comments about ds2's brain being "wired differently" and how "children like ds2 often have problems with X,Y and Z". If there was any doubt in my mind that he was talking about autism it all disappeared when he asked if I was interested in doing the NAS Earlybird course for/with ds2!
Despite all this there is still no sign of an official dx and the Paed doesn't want to see ds2 again for another 6 months. This sort of suits me atm as baby no.3 is due in just under 3 months and it will reduce at least some of the stress if I don't have to keep going back and forth to the CDC. On the other hand I'm not exactly hopeful that anything will come of the next appointment either.
So, should I be pushing for a dx or counting my blessings that ds2 is getting extra help and funding? Also at the back of my mind is what will happen when ds2 transfers to primary school. If he hasn't got a dx by then will this be a problem? Thankfully he won't be starting school until 2007 so that's a long way off yet but I can't decide what I should be aiming for.

Any opinions?

Where did all the spacing disappear to????

It's a bit "iffy" isn't it as you are getting help for ds2 but it isn't official iykwim. They could withdraw the support at any time.
My own dd has a dx of pragmatic language disorder but is statemented so it makes it so different.
Is there no way you could get your ds2 statemented?

Also if you and the pros are almost def. pointing towards asd I think it would be much better for everyone if the dx was made official.
As you know my own dd isn't so straight forward and no one has actually given her an asd dx, she has some "traits"

I don't think ds2 would qualify for a statement atm. He's doing well at his pre-school and I think it would be very hard to argue that they didn't have the means to meet his needs. He was coping so well when he started that the staff were even wondering whether he had real SN at all. After seeing ds2 in action a few weeks ago they changed their minds pretty quickly. It's difficult because he can be very sociable when he wants to be but he's very much a Jekyll and Hyde character. When he explodes, everyone knows about it!

I would push for it it if I were you.

That way you have already sorted out that side of things, if your ds needs extra help (re statementing) in the future. With luck thigs will stay are they are now, ie he wouldn't be at the level to need a statement, but as we all know things can change with any child, let alone those with SN. If you have the dx that is one less thing to have to sort out further down the line.

It is also much better when they transfer schools etc that this sort of stuff is in place, otherwise you may find yourself jumping through the same old hoops in the new school

ct, same thing here with my ds, provisional dx in april of ASD/AS and CAMHS are now involved but dont like "labeling" children, well i want my ds to have all the help he needs which in this area unfortunately doesnt happen until an official dx is in place.

School have reluctantly placed him in special needs register but can withrdraw the extra help at any time, we are pushing for a dx and we are also going to ask for a statement ourselves this month, IMO i think it is always in the best interest to get a dx as you seem to get better help for your child.

HTH

I would definitely push for the dx, esp with no 3 on the way as the first 6 mos/year can be pretty hard, best to get it out of the way as soon as possible. I hate that claptrap about "labelling".... if a child or any person has a condition, what can there possibly be against it being recognised??????? Only benefits as far as I can see.

I would also push for the diagnosis to be officially made as it will be "easier" for you to obtain a statement for DS2 if and when needed.

Bearing in mind that a statement can take about 6 months (and that's if you don't disagree with the statement drawn up or have to take the LEA to tribunal) to issue, I would certainly write to the LEA at least 6 months before your son starts infants asking for him to be assessed with a view to having a statement drawn up for him.

IPSEA are very good in this regard and their website is well worth looking at anyway (www.ipsea.org.uk).

P.S My son got extra funding at preschool as well but this itself cut no ice with infants who told us before he started there that there was no extra money available. I now have a statement for DS after much hassle.

I think you're right about possible problems when school starts. The school's SENCO is great but the Head is a real dragon who would do anything to save a few pennies. With ds1 we were lucky that his Reception teacher and the SENCO went ahead with what they saw that ds1 needed rather than what the Head wanted. There are no guarantees though that the same SENCO will be there in 2007.

I know that ds2's portage worker is keen for him to get a dx. I think she's probably as exasperated by the Paed as I am. He really is a very nice person but just doesn't seem to want to commit to anything IYSWIM.

I might feel differently if the Paed and/or other pros had genuine doubts about whether ds2 is on the spectrum but they are all pretty much in agreement that he has some form of HFA.

The portage worker is due to visit us next week so I will talk it through with her. She does a lot of work with the CDC so will hopefully have some ideas about how to get the ball rolling for a dx.

Thanks everyone.

Hi Coppertop,

Its not down to the Head to decide with regards to a Statement - its the LEA. They're the ones who'll need convincing in this regard as they will have to stump up the cash. If you can get a diagnosis so much the better. If a Statement is granted (and I sure hope that one is made available to your son) then the Headteacher will have to abide by it, a statement is legally binding.

There is nothing to prevent you writing to your LEA at least six months before DS2 starts school asking for him to be assessed. Infact I would seriously consider doing this regardless of anything else.

Certainly also talk with your portage worker. I hope you can make further progress.

With best wishes

Hi CT

Here's my story if it's any use!

DS turned four in October and we got a formal diagnosis a month later. We'd been under the paeds since he was two and from the first appointment ASD/AS was mentioned. However he said it would need time to give a definitive diagnosis as some children mature out of their traits and didn't want to give him an incorrect label. We were happy with this at that time as my DH had a lot of AS traits as a child which he outgrew so we wondered if DS would follow the same pattern. Also at that point we weren't clear how much his language disorder was affecting his development. Most importantly we were getting help based upon his needs so a diagnosis wouldn't have added anything further.

However things changed for us over the last 6 mths. Despite improvements in his speech Ds development was still disordered and getting more typical of ASD. Issues with concentration and behaviour also started to arise. We were (and are) currently getting a lot of input from the Early Yr Intervention Team at home and nursery but it was becoming evident that once he started school and they pulled out there would be no replacement without a diagnosis. Also the school wouldn't be able to access Autistic Outreach Service and we couldn't go on Early Bird either. So it was becoming apparent that a diagnosis was going to make a difference. The EP didn't want to go for it and we had quite a heated Ed Review meeting in early November with me, the ST and my HV on one side, the EP on the other and the Early yrs sencos sitting on the fence! I appreciated the issues with giving an incorrect diagnosis but IMO the correct diagnosis 3 years too late is just as detrimental. Anyway we saw the paed 2 weeks later who said DS was on the autistic spectrum and that ended all discussion.

Do you think a diagnosis at this stage would make any difference in practical terms? It sounds like you are getting a lot of support now. What about when he starts school? Would a diagnosis be of more use then? Would pushing for a diagnosis at your next appointment give a long enough time scale to set things up for school? There seems to be such a thing these days about not labelling children too early which as you say if there is doubt is fair enough but if things are pretty clear cut it seems pointless. I don't know if this is the same nationally but we were told we couldn't go on Early Bird unless we got a proper ASD diagnosis so seems odd that your paed is offering you that without formalising things.

Liz x

Lizlocket - That's so spooky! I think your post could have been written by a future version of me - right down to having a dh with all the signs of AS!
I think the only difference is that the Early Years SENCO we have is definitely on our side.

The more I think about it the more sure I am that we should be pushing for a diagnosis asap. The fact that ds1 had a firm diagnosis while still at pre-school certainly made things a lot easier when it came to moving across to school. I'd forgotten about needing a diagnosis before doing Earlybird. It was a bit more complicated for us because ds1 was diagnosed at 3.5yrs and our name was put on the waiting list. When we reached the top of the list ds1 was already at school but we were advised to use the place for ds2 - who had just got his provisional dx. In the end I couldn't do it anyway as there were no creche facilities available and we have no childcare or anyone to help out.

At the moment ds2 is probably getting more help than ds1 did when he was at pre-school - even though ds1 had an actual diagnosis. Based on experience with ds1 though I know that a lot of this will probably fall away when school starts.