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Please can anyone advise me on how to get a diagnosis of possible Aspergers?

(20 Posts)
basementbear Thu 29-Jan-09 13:24:33

DS2 is in Reception and has always been reluctant to socialise. He adores his brother and plays well with him (as long as it's by DS2's rules!) but does not play with any of his classmates, and never has since nursery. If we have other children round to play it inevitably ends in tears because he doesn't want to play their games, doesn't want to share etc. Among other things, he is also quite obsessional and unable to control his emotions and all the signs, in my mind at least, are pointing towards some form of autism, possibly Aspergers. I have spoken to his teacher, and he has been observed by the SENCO co-ordinator who both agree he needs some help, but I'm not sure where to go from here, since nothing much seems to be happening to help him at school (the usual response is "but he's still very young.."). The SENCO co-ordinator said that if I want to get him assessed I need to go the GP - is this correct? I assumed that if there was a problem the school might be able to refer him to someone, since the GP really doesn't know him at all. Would the GP need to speak to the school? If he got a diagnosis, what would happen then? Would he get extra help at school?

Sorry for all the questions but I feel completely at a loss as to how to proceed and would really appreciate any advice!

alfiemama Thu 29-Jan-09 13:32:24

Hi basementbear.

I used a two prong attack for my dS, I got the school involved but also took a list (3 pages long) of all the little things (quirks) that he does, I was very thorough, as soon as I showed the gp, he agreed something amiss and should be investigated asap, and referred ds to Community Paed.

The school should help with ed physc and speach and language. We had an initial meeting with school who agreed son needs desperate help and again has referred, we are still waiting.....

He has his meeting with the comm paed on the 12th of this month. My son does appear to be quite complexed according to the school and as he isnt coping has just gone to half days therefore I have been on the IPSEA website and requested that he be assessed for a statement, which means he should have 1-1 care throughout the school day.

Also have you applied for dla, I would.

sorry to have waffled.

Hope this helps

amber32002 Thu 29-Jan-09 13:48:03

Definitely worth getting a specialist opinion as Alfie says. Once there is a diagnosis, the school should put into place the right help. Note the word 'should'. Some do, some are not very helpful and you have to fight them/reason with them.

You're very right to want some early help, I think, because it alreadyt sounds like he's needing a less stressful way to cope with things. If a school knows his needs, they'll be able to help settle him faster (er, in theory).

basementbear Thu 29-Jan-09 13:56:33

Thanks to you both!

Alfie - the school have mentioned a group that the ed phsyc runs, to encourage social skills, she also does speech and language although he doesn't have problems with those, so hopefully that will help - again they are saying he is a bit young though which is annoying! When you say the school has referred your DC- who to? Sorry, I am totally in the dark here as you can probably tell, and what's dla??

Amber, thanks for your comments too. If he gets a definite diagnosis of Aspergers (or something else) are the school obliged to provide extra support such as extra T/A?

Buckets Thu 29-Jan-09 13:57:21

Ask GP to get you on waiting list for specialist.
A DX can help you get your heads around things, it can be a real relief to dump all those is he / isn't he uncertainties. Don't forget the whole family has been affected by his behaviours in various ways so a DX will help you all. It's not just about the child (didn't realise that until I did a Disability Living Allowance form for my DS and saw how much more work he is than his sister.).

Buckets Thu 29-Jan-09 13:59:41

Has the Ed Psych actually met him yet? If not, ask the SENCO to put him on that waiting list too. Her opinion will be v useful and there is no age minimum to see her (my DS first met his aged 2!).

basementbear Thu 29-Jan-09 14:09:51

Thanks Buckets, you are right - the whole family IS affected by his behaviour. Sometimes I feel so sorry for DS1 who is an absolute angel and gets justifiably annoyed that DS2 "gets away with" behaviour that I would not accept from DS1, or that we often have to do things DS2's way to avoid major meltdowns!! DS1 is nearly 7 and very sensitive, and I think it would be easier for him to cope with if he knew there was a reason for DS2's behaviour (I do tell him that DS2 finds it difficult to cope with certain things but if he knew it was a proper condition rather than DS2 being awkward I think he would understand).

The SENCO co-ordinator and the Ed Psych observed a session in his class, but he hasn't been formally introduced or assessed. Would the school have to ask my permission before the Ed Psych saw him one-to-one, and should I expect anything in writing from them??

Buckets Thu 29-Jan-09 14:11:47

Have a look at the checklist at the bottom of this page. You could print that out and take it to your GP in case they are cluelessgrin.

alfiemama Thu 29-Jan-09 14:12:23

Ok basementbear

Firstly I would arrange another meeting with the school, I think you need to be advised what help your ds needs. For example my ds is behind in all areas at the moment hence the need for speach and language.

You have to be careful that school are not too lapse like Amber said unfortunatley some schools are not very helpful.

The Ed Physc needs to come in and assess your child, they tend to interview you at the same time, asking about birth etc (or at least this is what we have been told).

Sorry forgot to say that my ds is also in reception and I would catergorically say that it is not too young to get help or a dx, the early help and intervention they have the better.

Also you can talk to the school about getting an IEP set up on his record, which is basically a few small targets ie, if your ds struggles with all the names in class, on his iep it could be to try and learn them, my ds has trouble with taking his coat of so they are concentrating on this. Taking his picture so he can see it visually.

Dla is disability living allowance, I would order a pack now, all you have to prove is how much extra care your ds needs. Then once you get that (ps loads of help with that on here) you can also look into carers allowance, depending on if you work and for how much.

Im sorry it probably seems like a whirlwind at the mo. But you will get loads of help and info on here, just let us know.

troutpout Thu 29-Jan-09 14:19:25

I went to the gp who refered my son to camhs. He was given an assessment by them after being passed through the departments to a team which deals with the diagnosis of autistic spectrum disorders. He got a dx of aspergers/HFA from them .He was then passed on to someone else who diagnosed dyspraxia too.

Buckets Thu 29-Jan-09 14:20:11

It's so hard for them isn't it? My DD wanted to write to Nina & The Neurons to ask why little brothers don't understandsmile. We now get DLA for DS and I have put some of it in their child trust funds because I see it as a reward for all of our hard work.

You want the Ed Psych to do a written report on him - that will highlight anything she sees as a potential obstacle to his education and will suggest how the school might best handle it. It's also useful documentation when applying for things and will help inform whoever does a DX one day. Ask the SENCO how to get this done (we were referred to EdPsych by our Paed so I don't know how it gets done otherwise, sorry.)

basementbear Thu 29-Jan-09 14:29:38

Thanks everyone, I will speak to his teacher again and try to get a meeting with the Ed Psych. The teacher and SENCO person have been a bit vague about everything and I want something definite to be put into action. Thanks for the link Buckets, will have a look now.

basementbear Fri 30-Jan-09 12:03:39

Just wanted to let you know I spoke again to DS's teacher today and she was really helpful. They will get an IEP in place and will set up a meeting for next week so that I can chat with her, the TA and the SENCO co-ordinator about what needs doing. The Ed Psych seems to come in about once every half term so I won't get to see her till after Feb which is a pain, I am beginning to see that these things can take a while.

I am also going to visit the GP - teacher advised that the school won't push for a diagnosis until he is 7, and although she was beating around the bush I asked her outright if she thought I should go to GP and she said it would probably be a good idea, as these things can take such a long time.

I am expecting resistance from some members of the family though - there is this feeling that "labelling" DS will somehow be to his disadvantage later on but I really don't see the logic of that. Surely if there is a definite diagnosis then we have something to work on. If the specialists say he's just an awkward so and so then I know I just have to be stricter [grin}

AttilaTheMeerkat Fri 30-Jan-09 12:39:35

Ask GP to refer you to a developmental paediatrician.

If your son needs extra support with his educational needs it is far better to get this sooner rather than later on (say when he is in Juniors for instance).

The school is under no real obligation to provide any regular 1 to 1 in the meantime; the surest way you will receive that is to get a Statement of special needs from your LEA. A statement is a legally binding document outlining the child's additional needs and would provide an additional number of hours support per week.

See a "label" or diagnosis as a signpost to getting him more help in school and in his day to day life too.

Certainly look into applying for DLA.

HTH
You are your child's best - and only - advocate.

Buckets Fri 30-Jan-09 17:16:03

You don't have to tell everyone about his DX (if he gets one) - if anyone asks just say he has a few social issues that are being worked on. You can always just keep it between you and the people who you need support from eg family. And as I said earlier, the DX is for your benefit as much as his - it can only help your family understand him more.
This is a useful article for family to read.

In our case I'd been talking about DS1's peculiarities since he was a baby to anyone who'd listen! So it was such a relief to know it wasn't just me imagining/projecting it. Once we started on the DX trail (took a year from GP visit) and I read up on ASDs, I decided that even if he wasn't on the spectrum, I would use the things I'd learned to help me cope with him anyway.
At the end of the day, you have the same old eccentric little boy you always had, a label doesn't turn him into some kind of bodysnatchergrin. You may find you have to grieve for the fantasy child he never was, that you always expected him to grow intosad.

electra Fri 30-Jan-09 17:37:06

Message withdrawn

electra Fri 30-Jan-09 17:40:35

Message withdrawn

teachertalk Fri 30-Jan-09 21:55:18

I am a SENCo in a large primary school and I refer children to all the necessary outside agencies for all sorts of reasons. If your child was in our school we would 1. make a referral to the community paed for an app in school (this can also be done by GP and it is useful to do it both ways and see which is the quickest). The advantage of school referring is that the dr should speak to school staff also to get their input (I always insist on this)after the app with you. You need to get the comm paed to refer your child to a consultant paed for a joint assessment with a speech and langauge therapist specialising in ASD. They will do lots of assessments, talk to you and possibly come to school to observe before making a diagnosis. This can be a long drawn out process but is necessary to get the diagnosis.
2. A separate immediate referral to Speech and language dept is important as children with Asperger's (in fact any type of ASD) have difficulties which come under their remit. Social and pragmatic difficulties are a symptom of Aspergers. Don't wait for comm paed to do this - in our county parents can even self-refer - school will have referral forms and contacts with this dept.
3. Ed psych referral also needs to be made by the school - he/she will carry out observations/ assessments in school. Some even do home visits too. An ed psych report helps a lot I find when referring for a Statutory assessment with the LEA ( the only permanent way to get 1:1 support in school).
The EP can also make referral to the consultant paed.

I always make these referrals at the same time and see which comes first basically. They are all inter-related and one can then trigger the others. As parents you have to nag and we always tell our parents that especially when the paperwork goes the LEA. I know it shouldn't be the case but you do find that the parents which phone school/LEA regulkarly get more/quicker success. I know this is all very scary and my friend had just gone through this with her son who was in Reception. They are young at 4/5years old but if you push hard enough they will make some diagnosis ( maybe pragmatic-semantic disorder rather than ASD cos of his age). I find a partnership between parents and school yield the best results but that is our school policy.

If you apply for a statement make sure you submit a report yourselves along with the school evidence - this always helps and shows solidarity. Statutory assessment is also a long process and is always more successful after a diagnosis - our paed refers them to the LEA herself they can't argue with that. In our LEA a stat assessment normally takes 2 terms if not longer. Schools do have a pot of money for emergency situations to rpovide short term 1:1 cover but they have to prioritise.

This is what happens in our LEA and it could differ to yours. I would ask the school for a copy of their inclusion/SEN policy to show them you are serious. The SEN code of practice should be easy enough to find on google.

Hope this helps - Good luck x

Buckets Sat 31-Jan-09 09:07:52

Just wanted to add my DS was referred at 2y and DX'd at 3y with Asperger's so don't take young age as an obstacle. Our area has a multidisciplinary assessment programme and a clinical psychologist there made the final analysis of several reports, tests and interviews. She said the main difference between generic autism and AS is speech delay - my DS was a bit delayed but had clearly speeded up by the time he was seen so she classified him as AS. That and he's a genius of coursegrin.

basementbear Mon 02-Feb-09 10:51:05

Thanks again everyone for your advice, especially Teachertalk - so much information I'm not quite sure where to start but I'm really grateful. Wish you worked at DS's school smile

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