Advice needed, DN not 'developing' normally, is it possible to get a private referral

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Hi All

I am hoping someone will be able to help me out with a bit of info/point in the right direction!

My nephew who is nearly four is not developing normally. There are ongoing problems at his daycare nursery and he is on the verge of being asked to leave (he attends 4 mornings a week but my sister often get asked to pick him up due to his impact on other children).

The issues are basically as follows:

Very poor speech, he says words but not in full (even very short) sentences and tends to only say 'half' the word if that makes sense. His hearing has been tested and is ok.

He is 'aggressive' towards other kids, sometimes recklessly so, he really doesnt seem to have any idea whatsoever that it is not ok to punch/kick/throw (!) other children, despite ongoing consistent efforts from his parents and nursery staff to instill realisation otherwise. He is often like this at nursery and hence often his mum gets asked to collect him early. he has a baby sister and he cannot be left alone with her even for 30 seconds as he has tried to 'jump' on her and so on.

He does not show any interest in conversing with other children or adults in his family, when we try to talk to him he just stares blankly!!!

he does not seem to be developing an awareness of dangers, ie he is uncontrollable when outside as he will try to run into the road as he becomes fascinated by the cars whizzing by etc.

Lots more i could say but basically the nursery staff and the HV have acknowledged there is something amiss and have said they will 'refer' him but there might be a very long wait.

My sister is willing to pay for private tests, but we are not sure who to contact, who would be the first 'port of call' in this type of situation to start the ball rolling??

To be honest i am wondering if he has Autism but am assuming he wil need an overall thourough assessment first before any more specialised tests are done.

We are in the London area.

many thanks

I would just go to GP, discuss concerns and ask for referral to child development centre / community paed. The ball should start rolling from there

Agree with herjazz - I took DS to the GP who referre him then to the Community Paediatrician. It didn't actually take all that long before seeing her.

There should not be a long wait to see a child development paed. There are govt guidelines and the waiting time (for the first appt) has to happen within a reasonable time.

Say to the GP you have concerns about his development and ask for a referral to the child development paed.

You can go private. But I'd definitely start off through the NHS. This is a marathon not a sprint. You need to 'pace' yourself....

I'd also recommend you google ASD (Autism Spectrum Disorder) and see whether you think it might be that or not - because sometimes GPs don't have a clue and you have to say I think it might be XYZ.....

I agree either HV or GP depoending on who knows the family better. You will be referred to see a developmental paed which doesnttake long, and then from there will be assessed for disorders ect, and that takes time.
In the mean time ask your sister to ask HV to referal to Speech and language therapy, there is clearing a need for it.
HTH

She should definitely go via the GP. It also may be an idea for the daycare nursery to write down their concerns too as back up.
He may require additional help at nursery and many private providers find this difficult. It is also important that his needs are assessed before he starts school so that he can get the support he needs.

You need to be in state system too even if you do go private to get support at school. Wld bw more inclined to go private for speech therapy assessment as if he does not understand language well that is v important for carers to know about.

Nursery either have (if in a mainstream school) or can apply for funding for 1:1. You or nursery may be able to access a specialist early years teacher. The nursery should contact the area senco for info. There are private assessment centres in London eg London children practice but you will need nhs diagnosis too. You could spend the money on a private salt who specialises in autism while you go through the system. You could also look at aba which will address behaviour issues and is not only for autism if you have funds. She should apply for DLA see cerebra website for info pack which will also help fund some options while you go through the system. If there is a nursery attached to a school with an asd unit or speech unit that would be worth a look and can be a quick way of getting into a unit / getting input. I assume she has applied to school for sept? She may want to review that if eg there are units locally.

She may be able to access portage although sometimes that's not available if a child is in nursery - portage are specialist workers who come to your home to work with child etc

Agree with others. You don't need to pay for a private assessment ... get GP to refer him to devt paed. Get her to write down all her concerns about her ds - this way she won't forget any details at the appointment. Assuming your sister agrees that there is an 'issue' ?

agree with agnes. Nursery should not just be sitting their tutting and sending him home, there are people employed by LEA (pre-school inclusion service) whose job it is to support mainstream nurseries care for kids with SN, and nursery should if needs be look at getting 1-1 help. If nursery don't want to engage with this, then your DN may well be better off elsewhere, there are nurseries and pre-schools who are supportive to kids with SN.

oh some areas let parents refer to speech therapy without having to bother with HV/GP, worth phoning up and checking that out. also some children's centres have drop-in SALT, again worth enquiring about. you should be able to get local child speech therapy phone no. from local PCT website.

Useful books and websites:-
(even if it isn't autism, many of the autism books have useful information about dealing with language delay)

1. www.nas.org.uk
2. Autism and Play by Julia Moor
3. Baby Talk by Sally Ward
4. Parent's Guide to Speech and Language problems by Debbie Feit.
5. www.teachmetotalk.com
6. www.hanen.org (books You Make the Difference, It Takes two to talk, More than Words)

7.www.ican.org.uk

Just wanted to thank everyone for the helpful replies, when you know nothing about these things it helps to have a bit of info about how to access help, how the system works etc.

I have passed on the advice re seeking a referral via GP and DSis has made an appt for next week, also suggested she write down the issues/concerns so that she doesnt' forget during the appt.

Have also pointed her in the direction of this board, she is very very worried and upset at present and is still 'hoping' things will resolve without help but when she is ready I think she will find this forum very very helpful.

Thanks again.

these sympoms for want of a better word do sound like typical ASD symptoms but like everyone says the gp should refer you to the child development clinic and from my experience 2 is often when parents begin noticing these differences in developmental stages/milestones not being met the specialists will check for underlying causes too like fragile x and send him to the speach therapist and for a ADOS where they video him/her to see reactions and to the educational psyc and contact the pre school but be assured that when he gets the help he finally needs he will calm down the world must be very weird and scarey to them good luck

I agree with SWC - procrastination seems common in the system especially in some areas!! Usually the first port of call with the nhs is the local general paediatrician - so the expertise in developmental conditions such as asd can be variable. As you suspect ASD talking to other parents of children diagnosed with ASD or other neurodevlopmental disorders may be helpful. Hopefully this should give you inside information on local services. In many areas there are long delays for language assesments, in others it might be other services such as Cahms if asd asessments have to go through them.

There are two main reasons to asses - so the parents know how best to understand and support their childs development and so everyone else will! A private assessment will help with the first but is not always accepted in 'the system' ie education.