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

[MyOneAndOnly]

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.

i would speak to your health visitor or GP about your concerns. Also speak to the school as they may be able to refer her to an occupational therapist.

Thanks DLI.
Problem is, I really do not want to go through the system initially. My aim is to find a reliable place for diagnosis privately, being treated with more respect and courtesy than I probably would get within the official channels.

I am not saying I will stay away from official channels, eventually we'll go through the motions with them but at least until I find out about what's going on and what can we do about it, for our own peace of mind and for our own information, I want to have the initial stages to be handled privately, with our own means.

With official channels, it is like hitting your head on a brick wall. I have ZERO faith in our GP or health visitors or her school / nursery. I had lots of upsets because of gp & hv during pregnancy / after birth / I had to endure lots and lots of unnecessary hassles from them. In the end I had to fit in with them rather than the other way round. It was total shock to my system to realise that they really do not care and do not have time to be even courteous. Long and bitter story.

My personal story is, my DD had feeding problems since she was newborn and I did not think she was thriving, each time I went to hv or GP i was told "to stop fussing and just to enjoy my baby". At one point, HV even told me ?If I had put aside a penny each time you complained about your dd not thriving, I would be rich by now!? With the postnatal depression at its worst, I did not think about complaining about hv at the time, which I should have. This is the attitude I had to put up with.

They dragged their feet in doing any tests whatsoever, despite going to different gp's in the surgery, despite requesting from everyone in the surgery, each time I went to see them, I was told all was normal when I knew they were not. At that time I thought about going private and enquired about that but even to see the most expensive doctor privately in Harley Street, they require a referral from your GP! How unreasonable is that ?

Each time I went to surgery to talk about my concerns, I felt that instead of listening to me, they were compiling notes about what a neurotic mum I was, how unreasonably demanding I had been etc. I do not have any faith in them. In the end I took my DD abroad on holiday and had blood tests abroad, only to find out that she was really anaemic after all... Then, only then, gp and hv took it seriously, they said "oooops, okay we'll give iron syrup on prescription from now on..." Her fussy eating and anaemia continued and I kept taking her to doctors abroad where I get treated with more respect and get more appropriate treatment suitable for our problem.

I rather avoid them at all cost. They are rule onto themselves and they expect you not to be an inconvenience to them. Shame really.

when my ds was born we were discharged from hospital and my ds was given the all clear, when we got home we had problems feeding him and it would take 45 mins to have a bottle. after three months of complaining to the hv and him losing weight we were referred to the hospital who said my ds had a cleft of the soft palate and probably couldnt suck! i dont have a hv anymore cos i refuse to see her, my son was later diagnosed with digeorge and since me kicking off and them realising they had made a big mistake we have been referred to everyone possible and my ds is getting the help he needs. i would change surgeries or make a formal complaint to the one you are at at the moment, they will then have to take you serious in case you go to the newspapers or seek legal advice about their missed diagnosis.

Thanks again DLI. Sorry to hear your similar story about useless hv & medical team. Glad that at last you get help you deserved.
I am taking this on board too, I know I should do something about it.
I am not complaining about my situation but I have so much going on in my life at the mo with all these probs as well as parental illnesses etc and am quite stretched to all directions so I am not fighting with all the problems I should be fighting with.
One other thing I am considering at the mo, is to defer dd's formal schooling by one year. Reception class is fine but the year after that and the one after that, worries me a bit, I am looking into our options, searching the net.
She is so tiny, still asking me to take her cuddly monkey and favorite doll with us on the days I do the nursery run and asking me to bring them back to collect her from school. She is not yet ready for full time grey school.
I don't mind paying through the nose one more year, for play based nursery / or similar place to keep her happy, even though sending her to local school when her age dictates, would be more cost efficient. She is a child only once and we are rushing them to participate in the big bad world so early when they are not ready.
Anyway, best wishes to you. I will have more thinking to do .
Thanks again.

as you are not sure if autism or not i would suggest looking at ICAN as they could advise on range of speech related conditions including autism or Christophers Place (speech, language and hearing centre) - if you are thinking autism could look at London Childrens Practice. autism / aspergers can be harder to spot in girls as they are more naturally social. However if she is self conscious about her speech / hard to understand this might make her withdraw / seem autistic but if the speech improves these symptoms might improve. For autism you need language + social problems but also lack of imagination / rigidity / repetitive behaviours. If she does not have these is might be something more specific to speech. Also look at AFASIC website for info on different conditions.

You can find child psychologist through the british psychological society - can be found on the net, they can't recommend psychologist but they can give you a list of those in your area.

Your childrens health services should be able to give you a list of practitioners (occ helath/S&l)who practice privately, or your local library may hold a list. A number also advertise on the internet - you can always check their credentials if your not too sure.

Citizen's Advice Bureau is always a good place to visit. It's free and impartial and they know all your rights and the best tricks for dealing with the systems.

The symptoms you have described for your dd sound exactly the same as my ds (who also has a stammer). did you get anywhere with a diagnosis and what turned out to be the best approach. We are at the beginning of a very long road with our ds

Hi Tuppence,
Briefly, DD has now been seeing the SALT for 4 sessions (there were long waiting lists) and there are good news, at the time of the initial SALT assesment, in Oct-Nov time, DD was unable to make "F" sounds as well as "S" and "L" and so on but now "F" sound has rectified itself, she can also make much better sounding "S" and we are working on it with positive visible outcome, I was told not to worry about "L" until she is 7 years old etc. So, speech aspect is sorted.
She also has started reception class where she has adapted well, and the episode about her wetting her pants, has almost (except for only one time, once) disappeared. She is one of the kids with not much difference. She is quiet and observant by nature and still not too outgoing but within the class environment, I have been told she is average, not different.
She still falls down and grazes her knees a lot more than her friends whilst running around in the school garden and is generally more accident prone but she is really not a very big and strong child physically. She is rather petite and dainty and in the end, I am not too concerned.
My observation is, that once she changed her environment, she has changed in attitude too.
And most interestingly, I have come to conclusion that I am, myself, slightly on the spectrum perhaps, as well as my father and mother.. We all in my immediate family, display some characteristics that are flagged as warning signs for Autism / Aspergers, ie: I am a loner always preferring my quiet solitude to fun and games with friends, never have much interest in other people's lives in either socially or gossipy way, never been a people person, I have unique way of learning things which I read that suit people with learning difficulties, the usual teaching methods in the classroom hardly suited me so I was in a way special needs child myself but managed to have a science degree, so I was just different... there are sooo much more to add but I am at the end of my lunch break at work so keeping it brief... What I am saying is, the things that gave me reason to worry about DD almost changed and hopefully your son will be progressing positively in the way you want too.
Sorry, I have not much time at the moment to go back and re-read in detail all I had written but so far, things do change for the better too, so wish you luck...
I definitely add more things after I read all later.
Best of luck.

Looking back, the episode about her wetting her pants and not saying anything about it to anyone, was in my opinion, to do with her being upset about having to leave her beloved childminder. DD knew that the lovely childminder who lokked after her for 2.5 years, was not going to be with us after dd started reception class and therefore she was really worried about it and looking back, dd was in a way, trying to get attention to herself, with these wetting accidents.
I had got her checked for urinary infection which came clean and ruled out the infection scenario.

DD's getting lost in an activity, does not show itself anymore. As in my original posting, I had not witnessed that myself anyway, it was only mentioned to me by the childminder so I was never aware of it.

She is still not very communicative with strangers or with people she is not very comfortable with.. But she is communicative enough with me, too much sometimes. I attribute this to her nature. Time will tell.

Clumsiness, like I mentioned above, is still there, and so is the problem of constantly forgetting one of the letters in her name (still, after all this time)... perhaps for these reasons, I should not be complacent about her and should keep my eyes open for further problems... but still, I am happy with the progress she made after starting reception class, both socially and in some other areas.

By the way, SALT had gently warned me that children with some speech immaturity, may (or may not?) show signs of being slow learners at school, without necessarily being slow if you see what I mean. In other words, there may be a delay in learning her letters / sounds etc but she would catch up with her peers with some extra work and be fine after that, without any permanent scars / problems. I took all these on board.
I do not know the age of your ds but I hope all these gives some idea.
Best of luck again.

Hi there

thanks so much for replying. My ds is 4.5 and in reception. I think he is doing OK, although we are seeing his SALT tomorrow as his stammer is quite bad. am worried that his speech, ability to hold a conversation is not where it should be for a child of his age but we will see. He also has a tendency to switch off, not responding until I call his name a few times. His teacher has mentioned that he has been quite withdrawn in class and does absorb himself in one thing, so she has referred him to the SENCO to monitor. We have a meeting soon with SENCO to see what their opinion is. It sounds like your dd is getting the help she needs and its great to hear about her progress. I am hoping it will be the same for my ds too.

Best of luck

Thanks Tuppence, looks like you are on the right track with requesting and getting help too, which is good.
They are so young and mouldable at that age now, I believe that with the correct intervention, they arrive at the level where they supposed to be in due course.
Best of luck to you and ds too.