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Here some suggested organisations that offer expert advice on SN.

What is the most reliable source for a proper diagnosis / I want to be more proactive.

(7 Posts)
MyOneAndOnly Tue 13-Oct-09 12:26:40

Hi,
I am a concerned mum to a 4 yr old delightful girl. She has unintelligle speech ie she replaces l sounds with y sounds, s with th and some more... and we have only seen a s & l therapist week before last, who did not seem to be concerned about the problem being serious and told me it was due to Dropping of Fricatives which was not a neurological problem but more of an immaturity on her part which she said it can easily be rectified. So we've been put on a waiting list for S & L Therapy. So far so good.
After we had S L therapist appointment, separetely, our childminder pointed out to me that she observed various things about dd which are: 1-) dd being "easily getting absorbed and lost" in some activities that she does on her own as if she cuts herself off from outside world and get absorbed in the lone activity she does eg puzzle, arts & crafts / and
2-) dd not approaches other children even though she knows them well or gets invited by them to play,
3-) dd sometimes does not answer back if she was spoken to, in other words dd not very responsive to outsiders, not very communicative
4-) and most recently, dd wetting her pants and not seem to be bothered by it until wet trousers get noticed by childminder later on.
Childminder did not put any name to all these symptoms but to my untrained eye, all these observations are leading to autism path but I may be totally wrong.
DD also has problem with number sequences ie she may be confused with the right order and also she keeps dropping one of the letters from her name when she tries to spell her name which consists of 4 letters only. She also does keep falling when she runs off, so a bit of immaturity there too.

The thing is, I did not notice these "getting lost in an activity in her own world" thing when she is with me. She is also rather shy but then again, I was painfully shy and extremely well behaved and extremely quiet too and remember being labelled as "odd" when I was a child by some other unthoughtful adults around me just because I was unusually quiet. I contributed DD's being shy and quiet, to her being like my own childhood version in many ways. I consider myself as a normal functioning adult with academic achievements and capable of holding a responsible job within a team, but I must admit I am a proper proper loner and I like my own quiet solitude to socialising.

I must add at this point, I am a foreigner and do not know anything about how the system works in the UK, with schools etc about children's such issues.

I did not mention any of the childminder's concers to Speech Language Therapist. I should have, but DD behaves differently with me and differently with childminder. I was not aware & not concerned.

I want to get a proper assesment / diagnosis and action plan. Instead of waiting for the system / the school offering it to us in bits and pieces sometime within the next XYX months / years time, I want to just find the right place privately now, if only it serves to give me some knowledge and / or peace of mind. It seems to me that slow system is a let down and a struggle for so many people from what I can see from other MN threads and I would like to have some shortcuts if I can.

Do we need a child pychologist ? or occupational theapist?

How do I go about getting a proper, proper diagnosis for dd? Where do I find a reliable psychologist or therapist? (instead of just going to someone who advertises on the web etc?)
Sorry for making it a long post. I hope someone would kindly tells me step by step where do I go to get help...

DD is starting reception class in January in a school which I am not very impressed with.
Many thanks.

BobbingForPeachys Tue 13-Oct-09 12:38:59

Hi

there are a few toutes and to an extent you need to find out what goes on in your area as it varies between trusts; as a rule of thumb a referral from a GP should be the best way to go for a small child- there is the option of Ed Psych via schol but IME the GP has been better (it does vary though, as does anything that rests with human beings LOL)

Be aware that DX can take sometimes even years- this can be especially the case if SLT issues are present as many professionals spend time juggling between the two toensure a correct DX; the upside though is that you can still receive support whilst that is happening.

A good palce to get ifo is the NAS website, google NAS Triad for a starter point..

I would say two things:

1. none of those things construes a definite dx of asd: they are red flahgs perhaps and warrant watching but are neitehr definite nor necessarily indicators of anything other than a bit of delaye perhaps. That doesn't mean it's not asd either though.

2. Differences between settings is normal so doing X at CM but not with you would be seen in a great many children wwith ASD, it's about stress, setting, routines- all sorts.

HTH

MyOneAndOnly Tue 13-Oct-09 12:56:11

Thank you very much BobbingForPeachys.
I may be wrong in saying that but, I also want to avoid a diagnosis which will stay in her records and will limit our / her options, not sure if I am making any sense... If for instance, we go through gp route / or school route, and get a diagnosis, it'll be bonding and restricting. It'll be black and white. And it'll be a label for her. This may have certain benefits surely but what if things evolve by time and diagnosis becomes inaccurate / insufficient as dd may mature and change in many ways? Then it may be an uphill struggle to change / override the previous diagnosis which may not serve us anymore.
For that reason, I would rather not have her labelled with this or that for as long as we can. I want to have the diagnosis for our own info for the time being and develop treatment strategies with our own resources for as long as we can or until we are sure that the diagnosis is 100% correct, if I am making sense...
I am a pessimist and read so many negative stories in other MN threads, I do not want labels for her really.
Ooooh, I don't know... Maybe I am not talking much sense...
Anyway, I appreciated your reply.

BobbingForPeachys Tue 13-Oct-09 13:05:08

Ok well you don't have to accept label to get a dx,many a diagnostician will just tell you what they think is going on.

But may I suggest BIBIC then?Charity that accepts kids with everything from dyslexia up (so your child could go on SLT alone) but does a lot in the way of 'whole child' assessment: no diagnosis (though you can ask for a CARS test if you are really worried- no labels thoughm, outside their remit) but what they can do is help with strategies.

Two of my boys have diagnoses now but we started at BIBIC and they checklists helpwith the the dx as wella s being fab in stand alone.

MyOneAndOnly Tue 13-Oct-09 13:20:08

Thanks for that too, I am unfamiliar with many things, I have just looked up CAR test and will look up BIBIC in a minute.
So, what happens if I do not accept a diagnosis? Do we get offered a second opinion? Or do we get absoultely no help with some obvious signs of problems, just because parent refuses diagnosis?

Is there a professional governing body regulates all these special needs tests and offers support / info system for parents which including legal entitlements ?

BobbingForPeachys Tue 13-Oct-09 13:25:18

The tests are administeered by professionals who usually have medical quals so they woudl be covered by their progfessional body- however the NAS (National Autistic Society) is the umbrella organisation for aprents,with many smaller local charities about. Diagnostic criteria is provided for either by the DSM IV or ICD criteria, both of which should be searchable easily enough, choice of test is a mix of local trust policy and professional choice- specialists I know like the ADI R interview and DISCO assessments, but we had a 3DI one and that was good for us (ds3 was a complex case to dx, though more obvious now).

Access to services should be on need rather than DX (though a dx can speed things up), refusal to formalise a label should not alter that.

I'd start with the NAS.

MyOneAndOnly Tue 13-Oct-09 13:33:59

Thanks for all this info. It has been priceless.
Now I will look up all these websites and study!
All the best.

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