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Here some suggested organisations that offer expert advice on SN.

I don't know who to turn to?

(7 Posts)
teamtwilight Wed 15-Jun-11 14:20:52

I am at my lowest point ever right now and feel no one wants to touch us with a barge pole! My son who is 5 in Aug is currently being assessed by a nurse practitioner (working under a pediatrician). He believes he may have autism, although my gp thinks it's adhd. I have always suspected something was not quite right but over the last few months things have got very bad.
He has a meltdown almost every day now, throwing, running around the room, climbing, screaming, spitting, hitting, laughing uncontrollably, being so cruel to our cats we think we need to re home them. Everything we have tried with regards to teaching him right from wrong has not worked. He soils himself several times a day. In fact there are too many things to mention but I have totally lost control of my son.
He is already in a mainstream school. They have had issues with his behaviour but he seems to be able to control himself better there which my health visitor has said it can't be adhd as for this he would be in a meltdown constantly and wouldn't be able to concentrate on anything for more than a minute or so.
I have been referred to cahms and I am awaiting a phone call from them as i am desperate for help. My big concern is that my son behaves so beautifully when he see's all these professionals and they look at me as if to say what's your problem!! Is this common?
I am prepared to go on parenting courses etc in fact family steps have refused to take us on as they don't deal with autism. Where do I go from here, what happens next? If I have to wait months or years for a dx I am afraid of what my son may do.

IndigoBell Wed 15-Jun-11 14:50:36

Sorry you're going through such a hard time at the moment.

We've all been there.

A HV can't dx. It may be ASD or it may be ADHD. TBH it probably doesn't matter all that much which. There is so much overlap between the two conditions.....

Is CAMHS going to do a dx? Or a paed?

It is common for kids to behave for profs or at school and still be a total nightmare at home, at least it's common for ASD (not sure about ADHD)

Which one do you think it is? ASD or ADHD? Then start reading up about it, and decide what you're going to do......

Do you want medication for him? Or more ideas on parenting strategies? Or ideas about diets / treatments / therapies that might help?

teamtwilight Wed 15-Jun-11 16:21:10

Thanks for your reply Indigobell.

I have no idea if paed or CAHMS is going to dx. My paed told me to see my gp and get him referred to CAHMS but I have heard nothing from CAHMS hence my phone call to them today. Still not had a reply.

I think he has traits of both ASD and ADHD aswell as ODD but as you say they all overlap.

I am open to parenting strategies. I have been in contact with 2 family support workers from NAS and they have advised on certain things and have sent out info and star charts but they haven't worked so far. Have totally abandoned naughty step as this is pointless and makes tings 10 x worse.

As for medication, well I will probably be flamed for saying yes I would like to try him on it but I have no idea how I can do this. Who prescribes it? and does he need to be dx? Is he too young etc?

I have been keeping a diary and have not seen any major patterns regarding diet and behaviour. Not sure what else is available to me?

StarChartEsq Wed 15-Jun-11 16:36:52

Predictably I would suggest that you saw/contacted a behavioural analyst and researched ABA.

I'm sorry you're having such a hard time.

If you have the money, a private developmental paed might give you a head start.

teamtwilight Thu 16-Jun-11 20:09:22

Camhs finally called me back today to say they couldn't offer any help as I was under a paed, yet another door closes!

I have considered going private even though we don't have the money, any suggestions for the east mids area?

BialystockandBloom Thu 16-Jun-11 20:43:39

I would go back to GP and camp outside the surgery until they refer you to a paediatrician. The HV is not placed to diagnose, neither is a GP or CAMHS. Only a paediatrian (and usually within a social communication clinic) can do this.

The sad truth is though (ime) is that even if you get a diagnosis, you still don't automatically get offered any practical support. So, the best thing you can do while you wait is read up as much as you can about ASD, ADHD, ODD etc, and all the various therapies, techniques, strategies there are for dealing with the specific problems your ds has, and start putting them into practice. Don't wait for a diagnosis - just look at the difficulties he has, each individually, and see what you can do to address each of them.

The diagnosis itself isn't the problem - his behaviour is, and you need to find soemthing to address this for all of your sakes. You know this already as you've already spoken to the NAS (well done for doing this). Keep going with the strategies they suggest - nothing will work overnight, but consistency and patience is key.

Feel for you - it sounds very hard for you all sad

Btw the HV is talking rubbish, certainly when it comes to ASD - children can adapt their behaviour very well indeed, and behave very differently at school or home. It doesn't mean that they don't have the condition.

teamtwilight Thu 16-Jun-11 21:41:41

Thanks BialystockandBloom, I am beginning to realise that a diagnosis isn't going to change anything and will not be followed by a miracle cure/any answers to my prayers.
It is in fact the parents/carers/family of children with sn that does the hard work/research to adapt there lives in order to make things easier/happier/more manageable for everyone.
I understand that me and my family have to change and I will do this with open arms but by eck it's bloody hard! I salute every parent going through or have gone through this and I thank everyone who offers advice, support and there experiences on mumsnet.......you are amazing!!!

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