Advice re diagnosis

[overthebar]

What a fantastic source of info available on this board. My son is 2.9 and I have found more info here in one night that I have in 9 months! Brief history:-
Age 2 - Referred for hearing test at 2 yr check as not responding to name etc. No speech. Poor social skills and prefers to be on his own.
2.5 Hearing test fine.
We naively thought once he started speaking everything else would fall into place as constantly told "boys are slow" "my son didnt speak until he was 4" etc.d
2.7 Started nursery in Jan and has settled in reasonably well but has a key worker assigned to him and nursery advised to get referred for SALT, paed devp check, autism assessment and to get the ball rolling for an SEN. Whilst initally a little shocked with all this I have managed to get a full assessment with the SALT who said it was highly likely he is on the ASD but she cannot make a diagnosis. Have the paed devp check on 20th but worried as have been told the autism assessment have 8 mth waiting lists. Has anyone gone private - is it worth it?

bumping for you. No real advice as my son is not ASD-somebody with more experience will be along shortly. FWIW, I wouldnt think going private would be of any benefit tbh-he seems to be getting support in the areas he needs at the moment and nusery sound pretty clued up. Having a label/dx sometimes makes it easier to access services etc, and I dont think waiting a few months will do any damage. Hope you are getting oover the shock and welcome to mumsnet SN.

bumping for you. No real advice as my son is not ASD-somebody with more experience will be along shortly. FWIW, I wouldnt think going private would be of any benefit tbh-he seems to be getting support in the areas he needs at the moment and nusery sound pretty clued up. Having a label/dx sometimes makes it easier to access services etc, and I dont think waiting a few months will do any damage. Hope you are getting oover the shock and welcome to mumsnet SN.

I was in a similar position to you around 4 years ago. My DS is now 7, and the time has flown by! It is possible to get a private diagnosis, which I did, because I couldn't stand waiting and wondering!! Contact your local private hospital and ask if they have a developmental paed. There are also private assessment centres where a group of professionals (paed, speech therapist, occupational therapist, educational pych.)work as a team to give a diagnosis, but these are incredibly expensive, we're in the North West, and one has recently opened here, they offer a 2 day assessment with full team for £1500.

The downside to private diagnosis is that sometimes the education authorities refuse to accept them, so if you are trying to get a statement of special educational needs for your child, it won't necessarily help. We stayed on the NHS waiting list, and eventually got a diagnosis from them too, which, fortunately, was the same as the private diagnosis.

www.peach.org.uk/AboutAutism/ObtainingaDiagnosis/Page2

my ds1 is 2.7 he has had the paed check and she has said he is on spectrum but must wait for assessment due to his age, see how he responds to going to preschool and having salt. he has 1-2-1 in place for when he starts after easter, we have special needs hv and a salt. this was all set up at the check so if i were you i would wait until after the check as you may find that they are quite helpful. also to be honest when ds1 gets dx nothing much will change he will still have the same resources available to him.

Grateful for all the replies. Can I check what age you were told he could have full assessment at? Have also been advised re the LEA's not accepting private reports for statements and if he starts mainstream school nursery in Sept wil l want the SEN in place for1:1. Does anyone know if you can get an SEN without a dx?

Thanks again

Hi overthebar.
Welcome to the SN board.

I would talk to the paed on 20th and see if they can give you more info on waiting times. However, I agree with monstermansmum in that the DX will help get you resources but it sounds like you're getting help already.

MY DS1 (5.9) is ASD (mild Aspergers) and I have a DX but have not bothered to get a Statement as we are already getting lots of help from the school.

When you have a full assessment there will be recommendations and further actions on the report that will help you understand what the proffessionals feel your DS needs help with, and also give you an idea of what services are available to you. You can then decide where you want to go with this and the MNers on this board are full of advice and info on how/where to get help.

Not sure what age a full assessment is possible but I'm sure someone else will come along soon and tell you.

I think we're all shocked to start with, even if you know it in your heart, it's still a shock when they tell you you're right.

BR

Ds2's first Paed appointment was before he was 2yrs old (he has an older brother with ASD) and his full assessment was just after his 2nd birthday.

I think I can see why you are worried about the waiting list even though your ds is currently getting help. If my calculations are correct (and they often aren't!) your ds has a summer birthday. Although your ds will still only be 3 in 8mths time he will be starting school only a few months later. This is similar to my experience with my summer-born ds1.

As others have said, I think the private assessment will probably give you a better idea of what is happening with your ds but it's likely that it won't be accepted for statementing purposes.

I think that given the timeline I would probably put in a request for the statement before the assessment using the information you already have. The statementing process takes so long anyway that you will probably have had the assessment by the time it comes to giving evidence etc. I haven't been through the process myself though so am in no way an expert on that.

Have you had any contact with the mainstream
school nursery yet? They may be able to access help and funding for your ds from other sources. I know that when ds2 (now 6yrs old so this might have changed)was at pre-school they were given his usual 3yr-old funding and an extra amount on top of that because of his SN.

Hi overthebar,
my ds is 2.10 and we are in the middle of assessment, only because I pushed for the referral at his 2 year check (he is my 3rd boy so had an idea something was wrong). Lucas is currently in nursery and the nursery manager has applied on my behalf for the assessment for statementing, the lady is coming out too observe him 27th April. They have done this as once he turns 3 he will have less staff members in the room, so they need extra as he will not cope. I am not sure where you live but where I am they do not do a single test to determine if the child has asd but a number of observations which can take 8 months all together. I was lucky I had asked for him to see a SALT before he was referred to a paed so we may have a quicker result.
I personally think it would be best to go through the route you are going as going private doesn't guarantee a quicker dx and also may not get recognised if you need to apply for a statement.
By the way was your ds born in June as mine was.

Thanks again for all your really helpful replies.

My ds is June born hence has a place at mainstream nursery in Sept (9-12) each day. Have been in contact with the Senco lead at the school and has been helpful but will need to see reports first. Have given the SALT report which has a recommendation for 1:1. The nursery manager has also applied for his statement and he should have an EP come to observe him after Easter date tbc.

Also the nursery he is at currently have said he could still go there in afternoons from Sept to keep his routine and there are less children there and more staff but not sure if that would be too much for him. I wouldn't bother with the mainstream nursery at all but think it will really help for when he starts reception.

I have found that nursery is doing ds2 the world of good and he loves it. I know it doesn't sound like it but a year is a long time. As he gets older his traits will become more defined and it will be easier for them to acuratly statement him.
Have you been in touch with your local parent partnership? I have found them fantastic and full of great advice. They will help you through the minefield of sen and schooling, they will also attend any meetings at the school/nursery or lea if you want them to. My PP also has a support group which I like.

Thanks jjones. Apols but as this is all relatively new to me what is a local parent partnership?

They are supposed to help parents with issues such as statements etc, mine hasn't been much use. We are at similar stage to you and are thinking of applying for a statement without any evidence for the same reason - DS3 is at private nursery already and SALT says will need 1:1 but nothing will happen until after we have diagnosis. He is due to start mainstream nursery in Jan so if we want to try and get statement then need to apply now as takes 6 months. It might be you get lucky and nursery / LEA pay for 1:1 without a statement being needed (schools are supposed to put in first 15-20 hours a week out of their SEN budget and only if child needs more than that will you get a statement); however our experience is that hit and miss if school will pay for 1:1 themselves. We were advised to get a letter from Paed saying formally that is going to assess our son for ASD so LEA takes us seriously + something from nursery saying what problems they find etc. and request that LEA assess. Then we expect the LEA to use the NHS assessments (when they come). LEA can refuse to assess, but I am hoping as they have no evidence to go on they will find it difficult to turn down our request to at least start the process. My SALT told me that private nurseries can apply to LEA for funding for SEN so if you wanted to keep him where he was that might be an option. Look up Early Years Action & Early Years Action Plus basically there are 3 stages Early Years Action where the nursery themselves identify needs and set targets to meet them, Early Years Action Plus where the nursery say what we are doing isn't enough for child to make progress and call in extra help from SALT etc and then if still not progress, ask LEA for extra funding (if you google "PVI funding SEN" for your LEA it should come up with minutes for their SEN budget for private and voluntary nursery schools). To get this nursery (or SALT) have to in effect be prepared to say what they have done is insufficient. LEA may make you go through these stages before they will statement / put in 1:1. However as other posters show sometimes they will put the 1:1 in without a fight if the NHS supports 1:1. The trouble with not having it in a statement is that there is no obligation to give it. We are also thinking of private assessment but have decided to wait until after we get NHS one and then if we don't agree (with diagnosis or recommendations) to get private one. Most private assessments also book months ahead so you might want to line one up - you can usually cancel 2 weeks ahead without any payment being needed. So we're booking one in case we don't agree with NHS. We are also looking at various nursery options including special schools so we have an idea what is around. Even though paed has said our son would not be special school candidate, I feel he might need specially trained staff rather than just an ordinary teaching assistant who might not have any experience of autism.