Nobody will tell me what they really think!!

[adelle283498]

My DP and I have suspected our DD has autism for a while now and since she started nursery 2 weeks ago they have given us loads of support in getting a diagnosis, making things easier for her at nursery and generally giving us more help than we've ever had. We had a meeting yesterday with a woman from birth to five which was great and all but every time I bring up the Autism subject they wont give me definitive answers instead they say things like "we think she has traits that I have seen in kids with autism" and things like that. Its frustrating as I think this is going to be a really long process and we're kind of in limbo....
Anyone else had any similar experience?

It's a hard time for you, but they aren't qualified to diagnose a condition, it would be more than their job is worth.

Welcome to the board, hang around and tell us about your DD

Thanks, they did say they were'nt qualified tbf. My DD is 3 and 2 months and doesnt speak properly so after my 2 year check up we were reffered to a speach and language person... well... they reviewed Jess every four months wrote a report and never did anything other than that. Then they dropped me with no explination nothing... as did my HV. So... I have just put her in nursery 12 hours a week but she gets that upset and distressed they suggest she spend an hour a session which is 3hrs a week. She panics when we leave flapping her arms and saying bye bye over and over and cries until we come back. The nursery manager is lovely and so helpful she has gotten on to some different agencies to be involved so things are moving forward a little. She contacted my S&L person and she said we have been taken off the register due to missing TWO appointments (BOLLOCKS!) so ALL this week Ive been dealing with snotty receptionist's at the childrens centre trying to get hold of her.... shes like the Scarlett Pimpernell! Then the HV said she invited us to a baby creche thing which I found really impersonal as she had to visit us at home becasue DD refused to even set foot in the centre... and thats why she hadnt been in touch becasue I nevr turned up (I never got the invite anyway)! Pisses me off that families who need extra help are being left to deal with things thereselves.
My DD is amazing, she is so clever and the nursery manager has said shes well advanced in some things, like she knows her alphabet, counts to ten (in progress to 20), knows colours, recognises numbers and letters but she wont do it in front of anyone except us. She is very comfoertable with us but doesnt let people in to her world. She is like in her own buble most of the time and HATES change. We try to have routine in this house which is difficult with my work hours but she knows exactly what happens in the mornings and if i try to change that a bit she gets so distressed. She doesnt interact with other children well at all... its like they're not even there tbh like Jess is in her own world and noting matter but her world and her security.
Sorry about the essay!!!

Hi adelle,

I would ask your GP to refer you to a developmental paediatrician asap for further evaluation and an eventual diagnosis. If you saw a paed it may well help with the SALT as well. Am not unfortunately all that surprised to see that the SALT has given you the runaround.

People from places like birth to five are simply not qualified and thus unable to diagnose. They are all very nice but they can be full of hot air. Am glad to read that the nursery are thus far being helpful.

Another thing I would do re nursery is to see whether she is already on Early Years Action Plus and for you personally to apply for a statement of special needs from the LEA. The Early Years SENCO needs to be made aware of your DD, when is this person coming in to see your DD. You need to think longer term too i.e school hence the suggestion to apply for the statement now.

I would also look at applying for DLA (use Cerebra's guide on DLA before completing the mammoth form) as she needs a lot of time spent on her by yourselves.

The woman from B-5 has put ina refferal for a PEAD app so that should come through soon hopefully, The manager of the nursery is soemthing to do with SENCO so she's kind of leading things but its so nice to be taken seriously, I brought up my concerns at my 2year cheack about DD having autism and they brushed it under the carpet didnt give me any advice or anything. As for applying for DLA surely I can't withought proper diagnois can I?

DLA is based on her having care needs greater than a typical child her age, rather than a diagnosis (though a diagnosis probably would help). It often takes several months or more to get a diagnosis, unfortunately, as waiting lists to see paed can be long, and some areas don't diagnose at first appointment as they would then refer onto to a multidisciplinary assessment (so with SALT and psychologist etc). So have a look at the forms, and start thinking about applying in the near future.

If you don't hear anything within a fortnight, phone up the hospital where paed works to check that the referral has been received and is being processed. Unfortunately referrals can, and do get lost in the system.

Hi adelle and welcome to the board.

I have a lot of experience with pre schools and it sounds like you have found a really good one.

It sounds like the manager is probably the senco too and she sounds great.

Btw, lots of people on here dont use their childrens names they use Dd(dear daughter) or Ds(dear son).

Of course it is up to you but many of us feel more comfortable being anonymous.

Anyway it does sound like things are moving in the right direction for you and your daughter.

Good luck

Thankyou for the advice and warm welcome :D

The nursery manager is probably also the SEN coordinator for the nursery, (every nursery must have a nominated person) but the Area early years SENCO is employed by the LA to oversee nurseries and preschools in their area and to advise the nurseries about SEN. It may be that in your area, the B - 5 team is the name for the early years (B - 5) team.

You do sound like you've landed with a good nursery. Please keep on top of the paed referral and don't let it be forgotten. Start making a list of all your concerns and maybe a diary of behaviours to take along to the appointment.

In the meantime can I recommend More than Words which will give you something to be working on while you wait for the appointments. Don't be put off by the fact it's aimed at DC with ASD, it's a very easy to understand book and if your DD turns out not to have ASD, there is nothing in the methods that will harm her, on the contrary. It seems expensive, but it is really worth it.