Refusal to accept private ASD diagnosis?

[framedinwhite]

Hi all,

Hoping someone with more knowledge than me can help.

We've just put DD through a full ASD assessment privately because her preschool raised many concerns about her social development and following SENCO and HV observations and assessments. We're waiting on the results (few days max) but we're expecting them to say she's got high functioning ASD with sensory processing issues.

We decided to go down the private route because after speaking to the professionals involved and doing my own research it was clear that it would take literally two plus years to go through the whole process on the NHS. DD is 3.5 and will be starting school next September. We want to intervene as early as we can, once we know exactly what we're dealing with.

Just received a Paed initial appointment through for next Feb. This would be the first time she'd see anyone, not the assessment. Ring the HV confused and she said the referral has been made because our County Council may not accept a private diagnosis as good enough evidence for funding for support in school.

Is this usual? DD has been seen by three fully qualified, very experienced doctors.one was a Professor, one was a Paediatrician specialising in ASD and one was a Clinical psychologist. Why would our county council not accept whatever diagnosis they provide? It seems ludicrous!

Could it be because if you pay for something you’re more likely to get the result you want ? I agree it’s ridiculous.

It’s quire common because it is sometimes a case of paying for what you “want” to hear. A lot of the time it will depend who it is who has done the assessment

Yes I think this is common, it happened to a friend. They got a private ASD diagnosis hoping it would speed things up and also help secure a place in a specific junior school they wanted. They were in the catchment area for the school but it was over subscribed. The local authority did not accept a private diagnosis and they didn’t get into the school they wanted. They had to go down the NHS diagnosis route to secure support in the school they moved to.

I had a similar conversation with school after we paid for private dyslexia assessment for DS1.

School had twice raised concerns re dyslexia flags. Then did nothing much about assessment, there were other kids with BIG behavioural problems that were taking up attention, etc. We arranged private assessment, got a written report which said dyslexia and included quite a lot of personalised info about areas of strength & specific weakness plus practical suggestions. Went to discuss with school, they said private assessment "would not count" and they would assess themselves in due course. However, the more they talked the more they realised themselves this sounded a bit ridiculous. Ended up with them taking up various of the suggested support strategies, and also trying out other ideas themselves (ie totally appropriate response), and they did also end up putting him on the 'register' without any additional formal report - I think it was helped by the council people realised that the report we had paid for was from a legit NHS professional.

Anyway, paying for a quicker private assessment really helped DS. He may have sat just under the intervention radar for a very long time otherwise.

Unfortunately it is quite common not to accept private diagnosis

It will often depend on who does the diagnosis. Our DD was diagnosed at the Lorna Wing Centre, which is very well regarded and also does NHS assessments. I believe the NICE guidelines state that they should accept a private diagnosis as long as it is multi-disciplinary (so SALT and consultant psychologist for example) and uses recognises assessment models- ADOS/DISCO.

We had similar with DS but he got his 'official' diagnosis at the first appointment. The consultant said that she see autistic kids all the time and with now having met DS and read the private report she was confident that the diagnosis was correct and no further investigation was required. Took me by surprise as I was expecting to wait years for the diagnosis to be confirmed.

Yep, all recognised assessment areas. Apparently the combined testing they've done is the 'gold standard' in testing. Two of the doctors also do some working in or with the NHS.

We've definitely not just 'paid for a diagnosis'. I'm don't want this, I don't want my DD to struggle. I actually want them to tell me there's nothing wrong with her, but I suspect they won't.

I just don't want to wait over two years for her to get any support (although preschool are already putting measures on place to help which is great).

If they refuse it honestly I am going to kick up holy hell. I'm lot one to complain usually but it's just madness.

If the NHS have to accept private referrals, can your NHS diagnosis be sped up by your private E.P. reports??

Seems like madness to ignore it.

Possibly @Scarydinosaurs. I will take the report to the NHS paed appt in February. I guess if they're satisfied with it they may just concur?

I know when ds was diagnosed with adhd (already has a autism diagnosis at that point) I paid privately for a QB test to be done which I knew wasn’t diagnostic but was used to help diagnose. I then took that to the community pead and with what he already knew combined with the private assessment was happy to confirm the diagnosis there and then.

They may not but that doesn’t mean they won’t.

The private diagnosis might also be ok for school, but it’s a good idea to get yourselves in the system anyway. That way you will get some help and support from other agencies with less of a fight.

Hello, currently going through the same with our son of 7 years. Absolutely ridiculous! You have my sympathy!

OP did you not check this before you went ahead?

I don’t think local authorities and similar nor automatically accepting any private diagnosis is a bad thing. They need to be able to trust that the correct process has been followed and that the reports and suggestions are suitable and not just a company trying to make money

It can also help protect parents from being led the wrong way if they research these bits first.

Our council does accept private diagnosis reports but I know a lot don't. Even if it's not accepted the report will be helpful for the school in identifying your dd's strengths and weaknesses. Also you can get additional support (and even an ehcp) without a diagnosis though it's more difficult

The LEA will not want to accept any private diagnosis as it will then cost them money to implement what may be recommended.

Be prepared for a very long and hard fight. Contact SOSSEN for their help and advice.

@smellybellynoonoo No, why would I? We got the concerns, listened to them, did our research, found out that it takes years and so found a well respected clinic of experts and paid them to assess her promptly and in doing so we also thought we wouldn't be taking up an NHS place that can be used by someone who doesn't have the means to go private.

In no other medical area would a private diagnosis from a relevantly qualified doctor be questioned, why would I assume it would be here?

The clinic owner is an executive board member of the UKAP and an expert advisor for NICE! Her team are all excellently qualified and experienced.

But only those professionals qualified to make the diagnosis will make it @sirzy. It's not like a TA with no degree just says "oh I think I'll start a company to diagnose ASD". The psychiatrist who diagnosed DS' ADHD is a) a child and adolescent psychiatrist and b) very experienced in his NHS role with ADHD.
It's a bit like saying, oh I know you got your chest infection diagnosed at the private GP and you have a script for antibiotics but I'm a pharmacists and I don't accept you have a chest infection.

Thank you @KittiKat I will have a look at that organisation.

Unfortunately any diagnosis of ASD does not necessarily result in funding for school support. There have been so many budget cuts and many SEN children are now in school with no extra funding.

@whydoibover Preschool already have a 1-1 with her starting from September for the next school year regardless of diagnosis. The school is attached the the preschool so hopefully they will be able to be as proactive however the hope is that by September 2020 she may not need 1-1.

Common. Definitely go to the Paed.I would always advise someone to go through the NHS.

Often I advise someone to see them privately so that it can be done quickly but at the same time to always keep themselves in the NHS loop.

I went NHS. Got nowhere. The doctor I saw wasn't the one I was supposed to see. So, I made an appointment privately with the NHS doctor I should have seen.
He recommended I saw someone else. I got a near diagnosis from a private. Then got myself back in the NHS. And because they all know each other and respect each other's opinion locally here anyway, I think what had happened to me privately, and my near diagnosis made them all sit up and take notice and then I very quickly got an NHS diagnosis for Asperger's.

What is it you are hoping for, an EHCP?

Given the fact your daughter needs 1:1 support it sound very much like she meets the legal threshold for an EHCP needs assessment to be done. See this link www.ipsea.org.uk/what-are-special-educational-needs

www.specialneedsjungle.com/faq/can-a-local-authority-refuse-to-consider-an-independent-report/ more relevant info here.