Could anyone help with some advice about Aspergers?

[potoroo]

Hi - I hope someone can help with some advice or information.

After yet another meeting with DS's teachers today, they have gently suggested that we should have him referred for assessment for possible Aspergers. I'm not especially surprised (although DH is) because since starting school in September (DS is 4), it has been increasingly on my mind that something is not quite right with DS compared with the other children.

The teachers have been fab, and are already using strategies with him that they use with other children with autism/aspergers in school - he has a little "den" for when he needs time out, plenty of one-to-one time if he looks like he is not coping etc.

So I guess my question is what happens next? If the GP refers DS for assessment, what does that mean? How long does it take? How is a problem assessed?

Sorry if I am rambling, but this is all very new to me and I'd appreciate any advice.

That's brilliant about the school. My DS got DX at 3 and has just started Reception with no special needs statement, his school have been ace too.

I would print out this checklist, tick off all that have ever applied and show it to your GP. What happens then depends on where you live but don't leave without at least one referral. If you can tell us where you live, someone local on here might be able to advise more specifically? And do keep coming on here to chat through any new feelings, no matter how much you suspected it's still an emotional rollercoaster.

Here is also a useful article that your DH (and anyone else close) might like to read to help him get his head around things.

Thanks - this is really helpful.

I am in West Berkshire. The teacher did give us the name of the paed we would most likely be referred to but I've already forgotten.

I think my emotions are still a bit raw. Although I am of course hoping that he is just young and will grow out of this behviour, there is a part of me that thinks that at least if he has a diagnosis then we can work with that - thif you know what I mean.

It's hard to be the mother of the 'naughty boy' at the school gates

this is a brilliant one for aspergers - its what our diagnostician used.

www.udel.edu/bkirby/asperger/aspergerscaleAttwood.html

the question as to how long - well - it depends very much on the waiting lists and who he is seeing.
we got passed from pillar to post. in the end i begged my gp to send us to an ASD specialist. it was out of county but worth it - the health authority paid after much badgering from me.

The school sounds absolutely fantastic. Can they offer you some support too?

When you get the appointment, it depends on the paed to how things proceed, they often work differently. You may get a multi disciplinary assessement that will look at all areas of development. Or a referral to cahms who often deal with cases of suspected asd. I wouldn't worry too much about all that yet, because it really will depend on how your paed works.

I would suggest that you and your dh sit down before your appointment and write down a lit of all your concerns to take with you. It's hard to stay focused sometimes in these appointments, and it would help things along quicker if they have all the info they can get from you from the onset.

Good luck.

Hi potoroo,

You have already received great advice so I am going to look at your question from another angle.

Re your comment:-

"The teachers have been fab, and are already using strategies with him that they use with other children with autism/aspergers in school - he has a little "den" for when he needs time out, plenty of one-to-one time if he looks like he is not coping etc".

This is so great to hear and this will help your DS a lot. I will warn you now they may not always be able to do this particularly as he moves up through the school years. You have to also think in the longer term re his educational needs.

Is your DS currently on any school based action plan or SEN register?. Have you talked to the SENCO?.

I would now apply for a Statement of special needs from your LEA for your son. It is far better applying for a Statement now than say in three or four years time and the request for assessment is better coming from you the parents than school. You can appeal if the LEA say no, the school cannot.

Early intervention is vitally important and a Statement in place early on will help him because his additional needs will be properly recognised. School has to take notice of a Statement.

Another important consideration is that a Statement is legally binding, ANYTHING else is not and can only offer limited support.

IPSEA is very good at the whole minefield that can be statementing and their website is very informative:-

www.ipsea.org.uk

Hi everyone,

Thanks so much for your help. This is incredibly useful.

Attila,
We are working an action plan with the school, but I guess it is unofficial because the issue of ASD only came up yesterday. DS is not on the SEN register as far as I know.

I have made an appointment with the GP to get a referral. And one of DS's teachers is making herself available for me tomorrow afternoon for any questions (I think they are giving us a bit of time to get ourselves together!)

They did say yesterday that if he was diagnosed with ASD (is that right?) then additional funding would be made available to them to provide more support for DS.

Thanks again everyone, and I'll let you know how I get on.

hi i am posting for a lady at my playgroup she has a 3yr with autism.she is currently living in a 2 bedroom flat does anyone know who to contact to find out if she will be entitled to any help!!!!her dd starts a special nursery in january she also has a 6month old baby and a dd who is 7yrs.thankyou in advance

sorry posted in wrong place!!!! i read your post and meant to put new post sorry

Can I just explain about 'early intervention' because people often think this is some kind of magical cure. It's not, it's just about catching them while their brains are young and malleable enough, and programming them to 'fake it' and cope with all these pesky other humans in the world. Very much like puppy training, older dogs find it harder to learn new tricks etc.

Hi potoroo,

re your comment:-

"They did say yesterday that if he was diagnosed with ASD (is that right?) then additional funding would be made available to them to provide more support for DS".

If this is the case your son will likely be placed on something like School Action Plus (this is an action plan where any outside agencies are involved with your son, people like the developmental paediatrician, speech and language therapist, OT to name but three future possibles).

Problem with this plan is that it can only provide a limited range of support and is importantly NOT legally binding. There will be no one to one and no SALT.

I would still look into applying for the statement asap for those above reasons.

I think that early intervention re schooling is vitally important. As poinsettia rightly states early intervention is not a cure all (I would agree with her on that but would respectfully have to disagree with her other points made in her post).

This below is why. I have personally seen too many children with a variety of SEN flounder badly in school particularly when they hit junior school level because their additional needs have not been met properly. This is why I say start the ball rolling early to get his needs as well met as possible.

You are your child's best - and only - advocate. No-one else is better placed than you to fight his corner for him.

Another thing you may want to apply for now is the DLA benefit. The forms are very daunting but there is plenty of info on these pages and on Cerebra's website.

Yeah sorry it was abit facetious.

Hi everyone. I got the referral from the GP on Friday which I need to finish filling in. We are being referred to CAHMS (now I know what that acronym means).

DS's old nursery have supplied their observation book that they used when he was going through a difficult time earlier this year. I only read a couple of pages, because it is just so awful - I can't manage any more.

Attila - you said I need to apply for a statement. Excuse my complete ignorance, but what does that mean and who do I apply to?

Hi Potoroo,

Am glad to help.

IPSEA is very good at the whole minefield that can be statementing and their website is very informative:-

www.ipsea.org.uk

There are model letters on there you can use. You would need to write to the Chief Education Officer at your Local Education Authority (LEA) and give them six weeks to reply.

If you write the letter you can appeal the LEA's decision in the event they say no initially. If the school write that letter they cannot appeal. It needs therefore to come from you, you as parent have far more power than school ever would in this regard.
BTW you need neither a formal diagnosis nor school's permission to ask for such an assessment.

A Statement is a legally binding document outlining your son's additional special needs and giving extra support to assist with those needs. It is not just for educational needs, it can also cover social/communication difficulties as well. The school will have to follow it.

Anything short of a Statement is not legally binding and support therefore offered can be very limited.

My son is a bit older than yours but I can relate most certainly to what you wrote about the observation book. I found it very difficult indeed to look at my DS's work in the infants on their open days.

You may also want to apply for Disability Living Allowance (DLA) subsequently as well. Worth looking into.

Hi Potoroo

The school can put in up to 20 hours a week without a statement - all schools already get a budget for special needs and are expected to put in 20 hours per child out of this - if your child's needs are above this - and might well be as often need help at breaks and lunchtimes - then you would need a statement and the school would get extra money. But I just wanted to make the point the school already have extra money for the first 20 hours - I was a bit worried about your comment that if he had AS / ASD then they would get extra money. They don't need a diagnosis to put in the first 20 hours they can do that themselves right away. To get a statement you would need to demonstrate a need for more than 20 hours and therefore need that to have been in place already to show it is insufficient. Some schools will put in more than 20 hours out of their own budget to be able to collect evidence that it is needed and support case for a statement.

There is a lot to take in and we went through this earlier this year when our 2 year old lost speech and social skills, started hitting the other children etc and was diagnosed with autism. It can feel as though the world stands still and the future is terrifying, but he will still grow and develop and getting an early diagnosis can really help as you will be able to teach strategies to help him.

Get in touch with your local NAS you can go along to meetings without a diagnosis - they might have a specific Aspergers group - they also run courses HELP and Earlybird you can access. Other parents are the best source of information.

If you post about the specific problems he has eg sensory / social / difficulty with change etc then there are lots of very experienced parents on here who can give you some great advice.

I know what you mean about being the parent at school with the naughty child, but now you know he's not naughty its because there are some aspects of school he is not coping with. You may have to change the focus of what you concentrate on this year - it might be that he needs social skills to be the main focus and the academic stuff can wait.

Thanks so much everyone - I really appreciate it.

I am of course hoping that in fact an assessment will show that he does not have AS, but is emotionally immature and needs a bit of extra help for a while. But we will see.

In the meantime, I told my parents over the weekend what was happening. I got two email replies - one from my father saying that nothing is wrong: DS is just a bit shy and if he was back "home" with his family he wouldn't be having any problems (we live on the other side of the world from our families). My mother sent a long email detailing exactly how my parenting is to blame.

I sat in the carpark of Tesco and cried yesterday, and am still feeling quite raw today.

Luckily the few close friends that I have spoken to here are very understanding and supportive.

I'm posting this bit here rather than in Behviour because I don't think I can take too much more criticism (even though DS has not had a DX).

Hmm, really helpful comments from your family then...
How often do they see your DS. My parents (also on the other side of the world) only see us about once every 18 months and wouldn't DREAM of saying it was all my fault. Am very on your behalf!
(Hello, BTW. I have a DD, 5, with PDD-NOS, severe language impairment. Not helped by the fact she's bilingual because we live in France).

They see him probably once a year or so. They stay with us while I am here, so it is always a bit stressful - not normal circumstances.

I am pretty devastated by their response to be honest. My sis is furious with them - she has sent me a lovely email telling me how great I am which has made me feel much better.

Thanks for your support

You are right of course when DS3 was regressing we talked to our other childrens teachers and they said we would be surprised how many children had autistic traits. Once you know what to look for you see them everywhere - in other peoples kids, in members of your own family (bit of an empathy gene missing in your family it would seem). Both my older boys had children in their class who were considered "naughty" and didn't settle down until juniors, but they did settle down so it was just immaturity with them. However the school would one hopes not have raised concerns without some basis. Can you go in and observe? Perhaps get an idea about what the triggers for problems might be? He is just overwhelmed by numbers / noise?

Be kind to yourself and keep talking to those who support you. It can be a long road before you know what you are dealing with.

Do you think going fewer hours to school would help (if thats an option)? Our school lets lots of children do half days for the first term and parents can ask for this to continue if necessary (all children not just those with extra needs). Don't be afraid to ask for different treatment. Better that he goes shorter hours and school is a success than long days and he feels he's failed. Almost all reception children find the half term up to Xmas an ordeal - its dark, cold and they are exhausted - with both my older two we went back to major toddler tantrums in that part of reception.