Here are some suggested organisations that offer expert advice on SN.
It all comes down to money(13 Posts)
I have been smacked hard in the face with the realization that my DS most probably has Aspergers Syndrome. The lovely people on mumsnet advised me to see a good SALT, although the NHS SALT available in my area isn't the best and DS would only be able to access 6 hour blocks of therapy too unless I go private which, with me being a skint student, is unfortunately out of the question.
I spoke to the school too who have referred DS to the educational psychologist and they had a meeting today to discuss his suspected AS, although they said I wouldn't be able to attend the meeting and talk to the EP as due to the lack of funding the EP is very stretched and is only available half an hour once a month to discuss all the SN children in the school.
I then spoke to my GP with my concerns and she said that (again) due to lack of funding I would be waiting a long time for any kind of diagnosis and she wouldn't be able to get a referral for me, I would need to wait for the EP who spoke to the school to refer me to a pediatrician but because of not a lot of money being available and the department I would be waiting to see having to be responsible for looking after my area and all the surrounding areas they could have to deal with hundreds of children before my DS could be seen, so now I am left in limbo for god knows how long without being able to speak to anyone (apart from the head teacher and the GP, neither of told me nothing about AS and instead both said they'd try and get me a referral) about my DS and will have to learn everything about his possible condition from Google.
I know many places don't have a health service available to them and I am lucky to have the NHS but I am just feeling upset that because I don't have a lot of money at the moment that my DS can't get the help that he needs.
Okay. Go to the NAS website. Look up the red flags for AS or ASD and write down each and every one of those that apply to your ds.
Send a letter to the GP. State clearly the date and time of your appointment and that you were refused a referral. Suggest that perhaps you weren't clear in listing the symptons because you were very emotional, so you have gone away and written them down so that the GP can understand your concerns.
On a enclosed sheet (not part of the letter) take each item on the list and use it as a heading. Underneath, write one or two examples.
End your letter something like:
I would expect, given the severity of ds' difficulties, as listed here, that an urgent referral would now be made to a developmental paediatrician. Please could you also send me a copy of the referral letter for my records.
I am sorry you are not getting a good service. Get in touch with your local parenting team as see if they do parent programmes for AS, most do, either that or they will know of where one is being run.
Sorry thats crap. Go back to your GP and insist on a referral - if you google NICE there is draft guidance which should be finalised soon about diagnosis. If the GP won't refer or the list is too long in your area tell the GP you want an out of area referral (National Autistic Society can give you list of specialist places). Also make a complaint to the GP, PCT, NHS Trust etc and contact your MP. If need be find a new GP.
You can self refer to the EP - again complain if they won't put you on the list.
You can also request a statutory assessment - its unlikely you will get one without appealing but to turn it down / defend an appeal the Council need evidence - and the only way they can get evidence is from NHS / EP etc saying what the problem is and why a Statement of SEN is not needed, so it can be a back door way of getting a dx.
Also look at charities who might fund SALT etc eg Cerebra and Caudwell Children.
Apply for DLA - it will be knocked back as you do not have a diagnosis so you will have to appeal that (they should not knock it back but mostly are if no firm diagnosis at the moment).
Also you could ask your local social services Disabled Childrens Team for a carers assessment and disabled child assessment. You might qualify for short break etc and can take the money as direct payments to buy services etc.
If you go through statutory assessment and get refused - appeal - you can get legal aid as you are on low income - then use legal aid to get independent reports.
The school can put support in themselves eg 1:1 help. They might also be able to call on outreach services eg autism outreach, behaviour support (although sometimes these require a diagnosis too).
If it really is as awful as you say (and its pretty bad here too) then def hassle your MP big time.
Starlight I'd already searched online for all of the typical behaviours displayed by AS and ASD children when I was trying to figure out why DS's behaviour was so difficult and printed off a list of all that applied to him and in brackets examples of when he had displayed that behaviour and gave it to the GP as I already had visions of going in to the surgery and sounding like a neurotic mother, do you think I should write a follow up letter with this list attached again to see if it helps get a referral?
Keepingup thanks for the advice I'll have a look at parenting teams, the school mentioned that they could give me a list of support groups but would wait until the diagnosis incase he didn't have AS and I contacted all of these people for no reason (even though they were quite convinced in the meeting I had with the head teacher and the support teacher that he did have AS). I will try and contact them myself and state that I haven't had a diagnosis yet but would I still be able to have support, even just to have some questions about AS answered from a person rather than Google.
I can only second star's suggestion of a letter. Have done the same. I find that they take your requests much more seriously if make them in writing!
The point of your letter is to get down in writing that the GP has refused the referral. That is your starting place.
If the response is still no referral. Then you write to him again requesting a second opinion (but I bet the first letter does the trick).
Thanks Agnes and choc, I will start researching all of these, I didn't even think of trying charities, I wasn't sure if they'd be able to help me without a dx but I suppose it doesn't hurt to ask.
Oops thread moved on while I was typing
Agree with Star all requests in writing and keep copies
Parent Partnership (all councils should fund a PP service) can help you with basics (not always very impartial but ok for the background info / making schools do what they should).
That is rubbish, but the 'bright side' (oh yes, ha ha) is that actually in reality a referral/dx won't necessarily get you more hands-on support in any case.
The key thing is is that ds is getting the support and help he needs from school and home, with or without a diagnosis or even an assessment by the EP.
Talk to school again about every single one of the difficulties he is having in school, and how they are going to address each one.
Do the same at home.
You can look into applying for a statement without a dx - just need to be very thorough about his difficulties.
And you can probably find many, many strategies here on MN and other web resources for helping with communication, behaviour, language, interaction, anxiety, whatever.
Don't want to dishearten you, but my ds was diagnosed a year ago and to date we have had absolutely not one thing in the way of support - no SALT, no outreach, nothing. We had 'input' from an early years case officer who arranged meetings between us and the nursery. That was it. A dx isn't a key to sudden help. Or to understanding him - you will know him better than any paed/gp/edp.
I hope I don't sound too cynical and depressing. I just wanted to point out that having a dx doesn't automatically mean help. And there is plenty you can do yourselves. The most important thing is helping him with what difficulties he has, and you don't need a dx to do that. Keep posting/reading here, you will learn loads of ways to help.
How old is he, and what makes you think he has AS?
Sorry, x-posted loads there, and have also realised your other thread explained a lot about him - sorry
Second what others have said about pushing for ep/referral, but I'd still recommend looking at how you yourselves can help. Talk to the school again - they must find ways to help him, not exclude him.
Sorry you're having such a hard time atm - but there will be light at the end of the tunnel.
Get in touch with ICAN, they do multi-disciplinary assessments at their S&L schools. We are on benefits so it was funded out of a bursary, we didn't have to pay anything except our own travel costs. I don't know if they will do a dx but it is very thorough and comprehensive and they will write detailed reports (it is with a SALT, OT, EP and their specialist teachers, we already had a dx by then).
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