Thoughts on whether to get a private diagnosis please

[happyjustobeme]

DS is 3.4 yo. He has severe speech and language delay (no words at all), and to us, almost certainly has ASD. We are a month or so into a home based ABA programme, and he attends a mainstream pre school two mornings a week with a one to one support worker.

Everyone who meets him agrees that he shows many signs of ASD.

Our local authority takes an age to do anything. Speech and language therapy is woefully inadequate (half an hour every three months), and we ummed and aahed and in the end turned down a place at the SN pre school that we were offered for him as attending there didn't leave enough hours in the waking week to do ABA as well. He was rejected for a referral to OT as he has no mobility issues. He is being seen by a neurologist and eye clinic and Sn dentist soon. He has already been on the group language therapy classes that portage offers.

I have been told that the diagnosis procedure can take over a year. He was referred in April, and we have our first appointment with a paed who has seen him before as the first stage in the assessment this month.

Would it be worth us pursuing a private diagnosis? What would it give us at this stage? His one to one worker is funded by the LA, as is his six hours at pre school. We fund the ABA ourselves. We live in the south east.

if you are under a paed and have assessments pending, I would wait and see how it goes and not waste money on a private assessment right now.

why do you want to go private when you have appointments pending? just asking out of curiosity.

Thanks both.

Choc, I just want to feel that I'm doing the right things for him at the right time. I have no experience of any SN, and neither do any family members if friends. I am really in the dark about procedures, terminology etc, and I don't want to look back and them I should have been more alert. I don't know what to ask for, push for, what DS is entitled to etc.

well, the most important things are that he is supported and it sounds like it (you get 1:1 support). you sound as if you are going a lot at home (ABA). a private dx would not change the support you get and it seems you are in line for NHS assessments.

have you applied for DLA? if not this would be my next step.

have you applied for an EHCP? this is also something I would consider doing as he is starting school next year. I guess you might want to have ABA as part of the EHCP and this will be a battle so apply sooner rather than later.

If you can go private i would, we have been in system for over 5 years and he still doesnt have a diagnoses,the audiologist even said the other day that 99.9% of children that go to him with my sons condition have autism. his teacher has said hes on the spectrum,its just beyond a joke.

I got a private diagnosis for my son when he was 7. He wasn't a clear cut case and I wanted more help for him. For us it was worthwhile, had we waited for the NHS the waiting list was 14 months. His NHS paed accepted the diagnosis so we haven't lost out by going private.

I know what your saying polergoose, however my sons needs are not being met and we are going round in circles still, he did get help for the first few years now its all been dropped, he was supposed to start in a sensory group too which hasnt happened either.

Thanks all. DS doesn't have a key worker appointed by the LA yet, so i am pursuing this so that I can start the process for an EHCP.

The news this week that Summer born babies will be able to start primary and enter reception the term after their fifth birthday is really good news for DS. It means that we could do two years of ABA, which he is making great progress through (granted, his baseline us very low).

I couldnt afford private myself either poltergoose, but i know if i had the money i think i would do it xxxx

I went private for my ds (7) after waiting 5.5 years. For us it was eating away at me, I'm appealing a statement and I knew I would never get seen on the NHS. He has a pead and asd traits, a genetic issue linked to asd and a brother with asd but it was blocked repeatedly. I had little choice.

But I didn't share my report with my doctor, it will only be used for his appeal and my sanity.

My younger boy was diagnosed very young on the nhs. It took 18 months but possibly as he was so young when he was reffered and first seen by his pead (17 months).

It the LA wanted to place him in sn nursery then I think you should stay on the nhs. Private doesn't hold the same weight ( dependant on who you see). Also LA and nhs share info. My pead notified my son to the la, she got him his sn place, she asked for it, she makes things happen.

If your la has already offered help I doubt they will then sit back and not help with school.

Private could be a back up plan.

Ok, I will wait and see how the state assessment procedure pans out and go from there.

When we turned down the SN pre school place, we were unsure how ABA would go. We knew how over subscribed the SN pre school was, and really worried that we could be doing the wrong thing. But ABA has been so great, so farm that we aren't beating ourselves up over that. It's interesting that you think 2boys that the LA will not sit back and not help in relation to school. We don't have ABA schools in our borough, if that is what we think would be best for DS (impossible to know at this stage).

I have many many complaints about my LA and I know I'm not alone and most are pretty rubbish. But from what I have seen they don't tend to turn their backs on children that are flagged up very young.

Mind you with each year their funding gets worse and worse so who knows for sure.

I have a Aba school close to me. They advise getting evidence to show Aba works ( as in if your using ABA to potty train and no other help to potty train) you stand the best chance of getting in.

The very basic fee is £50,000 a year so I'm not sure that's a battle I have in me

I hve a just 3 year old and paid for and ADOS assessment - still waiting results! It is a 4 month wait just to see a speech and language therapist and GP/public health nurses not referring.

It does sound like you are catering for your child already. However I got the test a) to give ME and DP some indication of whether ASD is right; b) send assessment details to NHS to speed things up; c) to get going on ABA or thinking about future plans. My child hasn't attended a nursery at all and I needed to know to plan ahead for the future.

Hope that helps! I don't think I could have waited another 6-12 months only to still be unclear. And also DP is defensive and unsure, so need to show something concrete to accept whatever is going on.