frustrated+very confused...waiting for RG assesment for DD age2

[osospecial]

Hi, I am feeling very stressed out and confused this week and just need to do something to get things off my chest+see if anybody can help with some questions that I have regarding autism please.
My dd is age 2.2 and has very little speech, she babbles away a lot but only seems to say 2 words I can recognise (has stopped saying a few she had b4) she is on waiting list for SALT. At her 2yrs assessment with HV she was concerned about lack of eye contact, speech, dis-interest in others around her etc+refferred her for RG assessment with peadiatrician.
It has been 2months since this news and I'm just starting to get very frustrated at not knowing what this means for my dd and I am hitting a brick wall as nothing I am trying regarding her speech is working!
Does anybody know about this Rg assessment, what it involves? If it is a test for autism? Does it sound like my dd has this+what is the diff between autism+aspergers? The HV didn't actually say autism but I am only guessing at this is wot the test is about? Sorry soooo many questions but need to discuss it, everyone around me seems happy to ignore/act like there is no problem+makes me feel like I'm overreacting half the time! I'm fed up of people saying 'she will talk when she's ready'

I don't know what a RG assessment is.

Aspergers is an Autistic Spectrum Disorder - usually characterized by normal speech development.

It does sound like they are concerned about Autism.

I would ring up and try and find out when you'll get to see the paed. Because sometimes these referrals get lost......

It's very common for everyone to try and reassure you when they know absolutely nothing about typical or atypical development.

Ruth Griffiths assessment? If it is then it's just a general developmental assessment, not specifically asd related. It's general things like, can you feed the baby, can you build a tower with 3 bricks, can you give the cup to mummy, it's not scary and the child usually feels they are playing a game. As indigo said, do chase the referals up and make sure they've been received.

My ds was referred for a RG by HV after his 2 year check. He had no speech and was not interested in others, poor eye contact etc.
The Ruth Griffiths is an assessment carried out by a development / community paediatrician - it takes about 45 mins during which time the pead will take a full history then "play" with the child and assess the reactions to different games and tasks. The whole thing is really structured so that the paed can check responses to different tasks but as far as the child is concerned it is very laid back.
On the day my ds was his typical self and did poorly on many tasks, at the end of the consultation the paed said there were obviously some issues and that more investigation was needed. I asked if it could be autism and he agreed that ds was showing many traits but that we also needed to look at other causes. Blood test were organised to rule out underlying conditions and a genetic test for Fragile X syndrome. We were also referred to another paed for further investigation into ASD.
DS had his RG in April 2010 and was diagnosed with ASD and learning difficulties in June 2011.
It is a slow and frustrating process with many appointment, DS also had hearing tests along the way.
No one can answer all the question you have going round in your head now about the future - even if you were given a diagnosis tomorrow the future is unknown. It is hard but try to focus on the here and now - don't beat yourself up trying to get dd to talk it will happen when she is ready. DS now has quite a few words and his speech is still very poor but this time last year he had none!
Keep a diary, and a list of concerns / odd behaviour / worries etc it is hard to remember everything when asked at an appointment. Chase up all appointments / referrals and keep a record of who said what and when!
Has she had her hearing checked? If not ask for a referral asap.

I have had a letter from the hospital confirming the referral for both the SALT and the ruth griffiths assessment and to say that she is on the waiting list but they say they will send another letter with the appointment date. I did ring the SALT department to see how long the wait is as i considered going private for a few sessions but they said it is only 10 weeks (not 6 months like i first thought so decided to wait)
DD has had numerous hearing tests because she had evidence of glue ear back in March/Apr this year and so this is what we have been putting her speech delay down to because before she had this (last xmas time) she was starting to repeat words I was saying, but her hearing test have been clear since around June now and she has not picked up any words since then. The HV thought her speech delay was down to this at first but then at her 2year assesment she seemed to be concerned over the other issues.
My main worry is her lack of understanding and if she had the RG assessment now she would not be able to do any of the things Ningagoose mentioned such as give the cup to mummy or can you feed the baby etc, she does not understand language, she only understands gestures such as if i show her her coat she knows we are going out etc
it sounds like we still have a long road before finding anything out.
Can i ask cwtch4967 if your ds had SALT and if he had the same problems with understanding words and if SALT helped with that please?

have you looked into portage, you can often refer yourself depending on your area, something like that may be useful although again, waiting lists can be long. Do you have any surestart centres nearby that run any sn groups you can go along to?

osospecial

Glue Ear (Otitis Media with Effusion) is a method of acquiring Auditory Processing Disorder (APD) APD is a listening disability, or not being able to process all that you hear. According to the Medical Research Council 10% of children have some degree of APD (including those who have had glue ear)
Children who have APD learn new words by recognising and reproducing the whole sound of a word, as they have cognitive problems processing the gaps between the sounds which can make up a word, or even the gaps between words in rapid speech.
You may find my UK APD links collection provides so more detailed information

DS has SALT but his receptive (understanding) language is still very poor. He is very visual - I have to show rather than tell. Now he sometimes responds to his name but not if he is engrossed in something else (eg Thomas). If I called him for food I would get no response but if I take his plate and hold it in front of him he will then come and sit down to eat. Sometimes he will bring me a cup to request a drink or lead me to what he wants he is beginning to ask for some things now and may point to a banana and say nana.
Language is about a lot more than talking / speech. It is about wanting to communicate. DS can't cope with long sentences so we have to keep it simple ie instead of saying "get your coat on we are going to walk to gran's house" I would say "DS, Coat, Gran".
DS babbles a lot and it sounds like gibberish but that may be what our language sounds like to him - he just can't understand it apart from the odd word.

Thanks I will look into portage, I have not done that, also I have never heard of APD before but think its definitely worth looking at so thanxs for the link dolfrog.
Cwtch4967 that sounds very much like my dd, having to show the plate of food or drink etc, only occasionally taking notice when I call her name and she leads me by the hand to what she wants, she babbles loads 2, its like she has her own language.
Did you ever try sign language as a way to encourage communication? I've heard it can help but its not something I've tried yet, I know what you mean about wanting to communicate, dd seems happy to just not communicate most of the time, she doesn't get frustrated or anythn

DS didn't really respond to signalong but they still use it in school. DS gets very frustrated and has a melt down if he can't get across what he wants. His communication is so much better now than it was 2 years ago - starting school has helped a lot, he needed the special school environment we tried mainstream nursery with 1:1 but it was not right for him.
Find something that really motivates her - with DS it was balloons or bubbles. I would blow bubbles - he would get excited - then I would stop and see if he would communicate for more bubbles. Try and find something like this - it's the sort of thing the SALT did during our sessions. Anything that she is motivated by can help - do Muumys turn / dd turn etc. It helped interaction. Another thing that has helped us is giving a choice of two objects - have one in each hand and let dd choose ie apple or banana (ds LOVES fruit)