What happens now??

[twolittlemonkeys]

Hi all, my first post in this section. I have 2 DS. DS1 is 3.7 and I strongly suspect he has ASD, maybe Aspergers Syndrome.

So far we've seen a consultant paediatrician, SALT & SEN Inclusion Teacher (who will be visiting regularly). Apparently we'll see an Ed Psych at some point and all of those we have seen so far definitely think they need to see DS again and take things further. I just wondered at what point we are likely to get a diagnosis? Everyone seems very reluctant to say anything about what they think, even though I have told them I'm under no illusion that my son is 'normal' - I understand lots of parents go into denial about SN sometimes. But all the professionals we've seen have made lots of very generalised statements, and seem to be pussyfooting around the issue. I want to say Come on, hit me with it!

I deliberately started this process as soon as I had concerns so that hopefully any help he needs can be in place when he starts school. Am I being unrealistic? There just seem to be so many things to sort out and it seems like a minefield! Can anyone reassure me or tell me what to expect?

[AttilaTheMeerkat]

EP will not be able to make any formal diagnosis; that's going to be down to the consultant paediatrician. EP can though make recommendations re schooling and may suggest that you apply for a Statement from your local education authority.

You are wise to have started this process early but has anyone actually mentioned the word "Statement" to you re your DS's future schooling?. If not I would be applying for a Statement now from the LEA: having one of these documents in place before he starts school may help him a great deal once he is in Reception. Unlike a plan like school action plus, a statement is a legally binding document and school will have to stick to it. Not so with SA plus, its very generalised and the support offered on it can be very limited.

IPSEA are good at the whole minefield that is the Statementing process and there are letters on there you can use:-

www.ipsea.org.uk

You are your son's best - AND ONLY - advocate.

[twolittlemonkeys]

Thanks Attila, I reckon we're due to see paed again in December so hopefully we will have seen EP by then, so she;ll have verdicts from all the different people we've seen and maybe we'll get a diagnosis... I wondered about a statement though nobody has actually mentioned the word - I assumed an application for a statement had to be made by a health professional or by the school - d'oh!

Thanks for the link too, will take a closer look tomorrow.

[mysonben]

Hi, welcome to MN sn board,
it is an excellent thing that your ds is now in the system, and that you are seeking help.
Even while you are waiting for an eventual dx some support can be given.
Although when it comes to a statement for school , a formal dx usually opens more doors in theory.

The path to formal dx is long and winding it seems,(on average 1.5 y but sometimes longer depending on your area and who will be involved in the asessments).
Also professionals, unfortunately, do have a tendancy to "pussyfoot around" as you said rightly. This can be frustrating and stressing for parents.

My ds is nearly 4, he has been "in the system" with SALT shortly after his 2nd b/day.
And behaviours concerns have been raised at his nursery in october last year, this was the begining of the asd ??? for him, although no one said it out loud until april this year, when his paed gave us a verbal dx of 'mild asd', still now 6 months later all reports describe asd issues, some reports mention autistic behaviours, but never say outright he has autism.
They can be sometimes reluctant to give early dx, even more so when it's not a clear-cut case.

My advice would be to:
-start gathering a "dossier" , well a file of everthing your ds has, like appoitments, reports, any assessments,...
-keep on at them if you feel things are dragging.
-if you feel your ds will not manage well when he enters reception , then start applying for a statement of needs (because that takes ages to be sorted too).

Good luck.

[FranklyIDontGiveAMam]

I've been accused of being quite agressive because I have had quite a bad experience so far, but my advice to you (to be safe rather than sorry), is to begin a contact log of every conversation/phonecall/email with any 'professiona' wrt your ds.

The system is frustratingly slow and ambiguous at best and it helps you to a)see how far you have come and b)choose someone or something to 'deal with' when you are frustrated as you only have to look at your list to see what promises have been made that haven't yet come into fruitition. These recorded conversations will also be useful to you at statement time.

I second the suggestion to get the ball rolling with the statement. Professionals will tell you it is too early, but that is because they have a budget to protect and prefer the 'wait and see' approach because it is cheaper and because they are then not legally obliged to provide anything. Apply yourself too, because parents (not schools) have the right of appeal.

A statement request will also put a rocket up the EP's bottom, and may well get you through the dx process faster.

HTH

[grumpyoldeeyore]

Agree get started with a statement we are looking at having to take our LEA to 2 or even 3 tribunals to get through the various stages as they are fighting us all the way - the health say he's severe ASD - the education say he's mild and I'm over-reacting and greedy in seeking more support. The process will take a minimum of 6 months but if you disagree and appeal alot longer. On a positive note we got a dx within 5 months - but i think if its at the milder end they can be more cautious as its less obvious how things are going to turn out. They won't use the "A" word until they have all agreed, but if you do they will often be much happier to say what they think. If they think a parent has got their head around it they feel more open to discuss their thoughts but if they think the parents haven't got a clue then they are more likely to wait and see, so if you say we're thinking its ASD they are more likely to talk about it openly in my experience. There is a National Autism Plan (on NAS website) which sets out the guidance on timescales. Also have you applied for DLA? You don't need a diagnosis to get this just use the letter from the paed that they are investigating.