statementing and diagnosis for asperges/autism

[lisa6967]

starting both these processes now, SENCO involved, HV and KIDS (parent partnership) also paed and ed pyschs done report, i am looking for any advice and help really and experiences of anyone who has gone thru this for their child

Hi Lisa. Well done on getting it all going. It's a very trying waiting game, now. Seems to take forever. Just keep on top of it, try to keep positive that you are working towards getting the help your DC needs, and try not to let reports about his needs get you down.

Ask any specific questions here and you'll get great advice.

How old is your DS/DD?
It is going to be ups and downs for you - sometimes at the same time.
I have a 5 year old DS who has a DX of ASD. We got his statement (inc. full time 1:1 support) just in time for his start at first school last September and that has made his life so much easier and happier.
We didn't face some of the battles that others do and have received some amazing support.
Once you get the diagnosis see if your area does Earlybird courses as they will guide you through loads.

Above all, keep lurking /posting on here. Even with close friends to support you sometimes just need someone who really understands what you are going through.

my DS is 4 he is still at nursery but starts school in september waanting to get things put in place for when he starts, he is on school action plus but is obviously not getting any xtra help as i found out it just means outside people are incolved. Parent partnership came to see me today and is pushing towards a statement i have SALT asessment on 19th may and she said she will come with me to that which is a great help and support for me, she said after reading ds edpychs report and seeind ds she has no doubt i will get dx and stage 3 statement which is 1-1 full time support i not sure though cos of the horror stories i have heard from other people about cut backs and lck of funding etc

Have you (or nursery) requested statutory assessment yet?

Is his nursery organising the statement application?
It takes 26 weeks from start to finish so you need to get the application moving.

Has the Paed given a diagnosis yet?

We got our application in by Easter last year and managed to get the statement through by August so it can be done. Having 1:1 in place from day 1 at school is vital but it may be that the school can get that sorted if the statement is in the pipeline.

I really feel for you, having been in the same position last year, but it is so worth going through all the stresses.

lisa - we have heard those horror stories too. We were initially told it shouldn't be any problem getting a statement for DS2, then recently (after all the paperwork in) it was mentioned that fulltime support was getting harder and harder to get. When I asked if they were trying to prepare me for getting less support, they said no, just wanted to mention it. The school has been incredibly supportive thus far, so while I'm trying not to stress, it's still there lurking in the back of my mind. But it does seem very much a hurry up and wait thing.

Only intrigued becasue they 'say' that for AS in particular, it is not 'normal' to get a diagnosis pre 9. Aged 9 is the norm. My ds is 7, and we struggling, looking at an AS diagnosis.
Keep on, OP. Any other specific questions ?

ellenjane1 they have suggested starting the statement process but have said i should wait for SALT asessment to just have more of a case, and chocoholic dont even start me on paed report! my son had this last june and referred ds for audio and fragile x which came back ok we then went back to se him and he discharged ds. then when i got ed pychs report 3 weeks ago i went back into nursery to see SENCO and in ds school action plus file was a letter from paed saying my son had significant characteristic/features of a communication disorder i,e asperges! This letter was dated june 2010 and was sent to HV, nursery and GP, i never received this letter myself, im just his mother!!! As u can imagine i was not happy!

That is terrible. I would phone the Paeds office tomorrow and question why you were not informed of this, request an appointment as a matter of urgency.

Can you bring forward the SALT appointment / observation at all?

Aspergers syndrome as a DX is getting less common, paeds are being advised to DX ASD (autistic spectrum disorder) which is more of an umbrella DX. AS comes under ASD but is the high functioning end and is only given if there was no language delay.

ASD can be a more useful DX as it can open more doors to support as it covers more of a range of abilities. AS on it's own is sometimes seen as 'mild' autism (when it can be anything but) and can make getting appropriate support harder to get.

chocoholic had parent partnership down today she been brilliant she said when she left she was going to kick sum buts! she going for dx and statement and said she will take it to a tribunial if she has to and they wont like that because it will cost them more money as they will have to pay for 3 barristers, couldnt get an earlier appointment for SALT

Our paediatrician is also reluctant to give a definite diagnosis too early. She seems to work on a tentative one and that's fine with us. She said she wanted to give him the opportunity to develop a bit so she could get a more accurate picture as he matures somewhat, but obviously still didn't want to delay support for him. I can't say at this point that we're stressed over an actual diagnosis - we have the tentative one and that's good enough for us at this point. As long as he is getting the support he needs, that's really what's most important to us.

Agree, my understanding, is that AS diagnosis is much much harder to get these days.

oblamov perhaps an ASD/AS DX would be more useful? Then you coul pick and choose which you used when? That's what moosemama did.

Lisa I'd be furious with the paed. Glad Parent partnership lady is on the case, but not sure how much she can help with paed, usually more for educational matters.

ellenjane1 do i push for asd then because paed didnt see ds for long so didnt see a lot of his traits, were SENCO and parentpartnership have and both said autism, ie handflapping, repetiveness behaviour, no eye contact with children at nursey or teachers, lack of empathy, frightened of loud noises ie hairdryer, hoover hand dryers in public toilets, kicking and screaming when not in his norm routine, shall i go on?? will not kiss or hug me will only eat certain foods....

Sounds like ASD to me! But I can't DX over the Internet. I just think that high functioning ASD is a 'more useful' DX than AS. It can mean exactly the same thing, but HF ASD covers more than AS alone. If you want to tell your family or friends Aspergers it doesn't sound as scary as autism. If you want support at school ASD may be better.

autistic.org told me not to accept "autistic tendencies" if they mention autistic then i want autism diagnosis

Good advice. Autistic tendencies is a cop out.

Yes, I agree. Autistic tendencies and autistic traits get bandied about a lot.

Lisa - our DS2 shows many of the same behaviours, although not a lack of empathy - he is very cuddly but he is sensory seeking and wants hugs and cuddles a lot.

I'm not sure if getting a diagnosis really makes that much difference in getting help or support, does it? DS2 has been to PT, OT, SLT (who just finally got programme in order and is now requesting some 1:1 appointments to work with him yay!!!), ATS, 1:1 TA at school, paed, and is still going through assessment for some things - further OT re sensory and coordination difficulties as well as an ASD specialist for further assessment.

Obviously it's nice to have the dx, but I try not to get too focused on it as it's really just a confirmation of everything already suspected - the help and support is much more crucial to us, and we can access that without a formal diagnosis.

ru applying for a statement at school

lisa - we've already applied for statement at school. All the paperwork and reports have been turned in, we're just waiting for the results now, should be hearing in the next 2-3 weeks, hopefully.

good luck with that :) how is ur ds speach? r u querying autism/asperges? my ds talks really well its his communicaion with other people, so i bit worried bout SALT asessment, i think they will come back and say well he talks well theres nothing wrong with him! What happened at ur ds first SALT what do they do? What tests do they do?

Hi Lisa, Triggles. About a DX opening doors to support, if your DC's needs are more noticable a DX isn't an issue, but if their needs are more subtle in some LAs a DX can help. In my case DS's behaviour was completely off the wall and he had no language until 4. But as your DS has words but poor communication skills, that is more subtle, so a DX would be useful IMO.

Statements are supposed to be issued due to need not DX, but that doesn't seem to be the case in every LA. You may be lucky and have some good people on your side but, as Tesco's says 'every little helps.'

thanx for advice ellenjane1