Just received Aspergers/ASD diagnosis for DS - please talk to me.

[Bugsy2]

Feel so mixed up about this. On the one hand I'm glad I'm not a crazy woman for thinking there was something wrong for my DS, but on the other hand I'm so upset for DS & even though I knew there was something wrong, I feel shocked by the unequivical diagnosis.
Also realise I have a steep learning curve ahead. Please other ASD/Aspergers mums talk to me.

Hi Bugsy2 just wanted to add my support. I have found having a diagnosis very useful in getting more support at school. I don't have a statement, ds is getting by on school action + at the moment. It is extremely hard to get statements in my area unless the kid is at risk of getting expelled etc. However a statement is an excellent idea as the support is ring fenced for your child only so I would def. pursue that. When you see the headteacher I would say you want to apply for a statement because the paed recommended this. DON'T LET YOURSELF GET FOBBED OFF!!! They might well say - oh we have loads of kids of the spectrum here we can support him without a statement... Remember they are probably just thinking about £££ when they say that.

DS's main problems are social ones but he also has problems conforming with the school routine and concentrating. Now everyone knows he is AS however he gets more support and sympathy from the teachers. This in itself made it worthwhile getting a diagnosis. Remember AS is a spectrum - it is very easy to get caught up saying "oh ds doesn't do this, he can't really have AS..." He has some aspects of AS but not others. I'm sure the earlier ds gets help and support the better the prognosis for him. He can't just learn to get along like other kids he has to be actually taught what to do. The sooner he gets this training the better. Good luck and keep posting, there are loads of us with AS kids here and it is great to chat to others in the same boat.

MNers, thank you so much. I can't tell you how reassuring it is to know you are here and I can ask you all things.

"It is extremely hard to get statements in my area unless the kid is at risk of getting expelled etc".

Caroline

If you have been actually told this then the person concerned is talking both garbage and unmitigated bullocks. Also an LEA taking such action is illegal.

LEA's cannot operate blanket policies in this area and they cannot plead ignorance either, the law is the law. Some LEA's are more than happy to break the law to the ultimate deteriment of both parents and child. The acid test is that if the child's needs cannot be met then a statement should be issued.

I would certainly endorse your comment to Bugsy on approaching the school. Bugsy if you're reading this - don't let the school apply for the statement - it needs to come from you. You have far more rights than the school have in this regard.

I have an appointment to see the head teacher tomorrow & the SENCO will be there too.
The child pysch told me that she will definitely be recommending a statement in her report, so I will obviously be telling the Head this.
I just can't believe how quick this has been. I am reeling. It is so much to take in.
I told my ex-H & have insisted that he be with me at the Head Teacher's meeting tomorrow. I am fed-up of parenting on my own. This may just give me some leverage to get him to pull his weight more.

Attila, for the statement do I go directly to the Local Education Authority? Where do I start?

Bugsy

It is a lot to take in most certainly but you need to be the best possible advocate you can be for your son. He needs you to act for him and fight his corner.

Hope that your ex H will attend the meeting tomorrow - this is his responsibility as much as yours to carry.

I wish you well with school tomorrow, do let us know how you get on.

Bugsy

www.ipsea.org.uk/sevenfixes.htm

The above is the relevant page that you need; it also contains a model letter you can use.

You need to write to the Chief Education Officer; the top bod at the LEA. The LEA should reply within six weeks.

HTH

I rang up the LEA and requested an assessment over the phone. They sent me the paperwork to sign and once I had sent it back they gathered evidence before making a decision.

From memory, the IPSEA website has guidance on the whole process.

Be prepared for a long haul though.

From now on, the SENCo is about the most important person in your life. Good SENCo can make all the difference. Ours is fab, very approachable, dynamic and understanding.

I would certainly second Dinosaur's comment re the long haul. The whole thing for us took around eight months from start to conclusion (i.e the statement actually starting in school) with all the bureaucratic mayhem the LEA caused in the meantime.

Another question. When I made the appointment with the Head she asked how severe the Aspergers was. I was thrown by this as the Pysch said that he was high functioning ASD or Aspergers. Her diagnosis was of Aspergers. Does Aspergers come in varying degrees?

There can be a very big difference between children on the autistic spectrum. Ds has several ASD traits but is unlikely to get a dx as he doesn't tick all the boxes. However he does have a statement and for us that has been the most important thing in getting him the help and support he needs. Children with AS tend to be at the 'high functioning' end of the spectrum.

No, not really, although no two children with Asperger's (or autism for that matter) will be affected in exactly the same ways.

It's more a question of looking at his behaviour and the difficulties he is experiencing and basing the level of support he needs around that.

People tend to assume that a dx of Asperger's means less of an adverse affect than a dx of autism, but it ain't necessarily so at all.

I would second dinosaurs recommendation of Tony Attwood. He has a book - I think its called 'Aspergers Syndrome: A guide for teachers and parents'. I got this when ds first started having problems at school and found it really helpful.

Bugsy , more sympathy from the Kitegirl family. We have been in denial for nine months after a community paed first diagnosed DS1 with ASD. We just didn't want to know. Now I both want to and don't want to have that diagnosis - to start accepting DS for the lovely little boy he is and to start grieving, in a way, for a future that will be a lot different to what I had imagined. It's scary. We are just starting the battle with statementing and I am psyching myself for the fight. This board is a lifeline ! xxx

Hiya Bugsy > it takes a while to sink in properly, even when you know.

IPSEA are fab, however they are somewhat hard to get through to. The NAS also have an education line you can call that gives pretty much the same advice, IPSEA is best if you have problems but if you want a starting point then I'd go with the NAS one as they have an answerphone and will call you. Also, the NAS HELP! course for aprents with newly diagnosed children is supposedly fab (we were meant to go but DH couldn't get time off).

There's a book called Autism for Dummies that has a good chapter on AS. Don't buy it, make a list of what you want then get your library to order in for a tenner a shot- you can always buy anything you want to have longer term. Also, your NAS branch could well have a lending library.

Having a DX of AS can leave you feelinga bit caught in the middle- yes your child has an issue bit its amazing the amount of services that aren't offered to kids with it. It is however wrth asking your local social services disability tream to do an assessment, we couldn't get much in the way of services but DS1 gets inviytes to SN rugby and cinema showings and the like- very useful.

Its also worth seeing if there is a NAS branch in yourarea that has a person who comes out to visit; there's one here and she does info on all local services, gives you a very handy info. file and can also help with DLA etc. They're also startinga befriender service (already going in some palces) for aprents / people on the spectrum- we just put DS's name down, you could consider that.

HTH and if you want anymroe info do cat me.

(sorry order for £1 a shot LOL!)

Bugsy

Ask away if you need any help. xx

Thank you for all the extra info. I feel shattered. I am nervous about the meeting with the Head tomorrow. I desperately wnat the best for DS & know that I might be completely freaked if there is any suggestion that support may not be forthcoming.

Truth be told, the head is unlikely to be able to give you a straight answer tomorrow as it now has to be applied for, and go to a panel who will decide what to award. So be rpepared for that. There may be some leeway for the Head to make provisions from her school budget but that is unlikely and depends on the school.

I would print off as much info on education asyou can from the NAS site, I find that always helps- to hand over in a great wodge.

Let us know how you get on today, Bugsy .

Will do. All sorts of mad thoughts running through my head!!!!
Am thinking about selling up & using some of the equity in the house to send DS (& DD) to a Montessori school.
I can't help feeling that the teaching methods they use would be way more helpful & the smaller classes would be far less stressful.
There is a lovely school down in Brighton, which I'm finding out more about.
Probably off on mad, wild goosechases but it helps to be doing something.
I must have looked at every flipping ASD website in the world in the last 24 hours. Starting to feel a bit bonkers.
ARRRRRRRRRRRGGGGHHHHHHHHHHHHHH!

Hi Bugsy2
I had a DX of HF/ASD for ds2 at the end of reception, (he's now in yr 2) must say we weren't expecting it so it was a real shock.
I did rather a lot of crying in the first 6 months
So glad that we did get the DX as now, so much fits into place and I feel that I can do so much more to help DS.
I just wanted to add my story re statementing.
DS2 was at school action + because of his odd behaviour, but no real intervention had been put in place. After we had the DX his school applied for a statement.
The LEA initially refused to assess because the school could not show that they had put in any real support at SA+.
I thought that having a DX of ASD would automatically mean that he would get a statement. It did not, so I was really upset when he was initially refused.
I wish I had know that this could happen, had I known about MN, I'm sure I would have been more prepared.
The support that is given here is invaluable, I am a bit of a lurker and find out lots of really useful things from you all without saying anything.
Anyway, my story is not a bad one we did get a statement and for 34.5hrs 1.1 in a m/s school, it was just a rather epic journey.
It is a steep learning curve, but there is a lot of really good help out there and I am meeting some lovely people on the way. Good luck.

Hi Bugsy,
Don't look at every website that way madness lies. I've found these two are nice and helpful: 'asd-forum.org.uk' and 'asdfriendly.org' (sorry, don't know how to do links) or just stay here, of course!

My boy is 10, (suspected at 2, diagnosed at 7 with Aspergers). He's in mainstream school, with a statement giving him 25 hours of 1-to-1 help now, even though he is bloody bright and we were initially told he would get nothing ... oops, sorry, ranting... anyway, take it gently for the moment, and don't try to fill in every form possible whilst researching weird interventions, meeting school staff and standing on your head.

Some plus points of AS (in my son):
He's sweet!
He's utterly lacking in malice -- pointed out by a teacher of the grumpy-old-bat variety, who I'd always thought found him a pain.
He tries very, very hard to think about other people's feelings (and sometimes gets it right).
He still loves trains and Legoland.
He can't see the point of 'cool'
He's witty, in an original, offbeat way.
He sings absolutely in tune (though he does cover his ears when I try).
If he's interested in something he will learn EVERYTHING about it...(and tell me )
Could go on, but I have to go to school to see him in a panto dress rehearsal. Still can't believe he'd ever do that. Maybe he won't and there'll be a loooong pause and a voice from the wings

Thank you IGG & PIS. Lots more helpful advice. I always feel safer when well informed, hence my manic & brain blowing panic to gather information.
I will slow down soon, because I will be exhausted.
Off now to see Head Teacher with ex-husband. Grim combination!