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!

Hi, another Lorna Wing client here.

For those saying that people go private to get a diagnosis....really???! Do you know how much it is and the sacrifices families make to pay for it? No one takes the decision easily, for us it was years of deliberations!

Also the suggestion of finding out beforehand- many local authorities will not say yes or no to whether they will accept it.

Anyway OP - I used our report to evidence being referred into the NHS route, knowing we will need both. HOWEVER I have a real issue with putting my child through two assessments so will be challenging a reassessment as will have evidence from Lorna Wing, SALT and OT by that point. I’m hoping that it will mean we won’t have to go through the whole assessment process again. But then I may be being naive.

Good luck!!!

Well I have heard that about this in some local authorities. However, it drives me completely Round the Twist. The very idea that registered professionals who operate to a very strict code of conduct and ethics would somehow fudge the results because you are paying is just preposterous. I work for the NHS and I do a small amount of private work my professional registration, qualifications and clinical expertise are the same in both areas. Why in god's name would you accept my recommendations in one context and not another. It is more than my professional registration is worth to be handing out diagnoses or recommendations willy-nilly. It's just another way of gate-keeping and slowing down a process due to the lack of SEN provision in most Lea's.

The other side to this of course is if they can turn down your reports on the basis you've paid for the result, then surely you can argue the same for LA reports. the whole thing is nonsense. A SEND tribunal would certainly treat all reports equally.

It should have come up in your ‘research’. It’s common knowledge that private diagnoses aren’t recognised. I was also going to do the same thing but didn’t bother after learning that and eventually got it done by local nhs.

I'm confused, why would you want a positive diagnosis? Surely it would be better to be reassured all is well especially at such a young age when it might just be a catch up situation rather than anything clinically defined.

Send the NHS paed a copy of the assessment report when you get it and ask whether they need to do another assessment or are happy with the conclusions of your diagnostic team. It sound like you went somewhere reputable that complied with NICE guidelines with suitably qualified clinicians.

An EHCP (indeed any school support) is supposed to be based on need not diagnosis so your assessments will help inform that whether she gets a diagnosis or not.

DD had NHS diagnosis age 4. I had to prove to the school that it was NHS before they would accept it. I literally took the referral letter and highlighted the NHS logo in the corner. That was a Lorna Wing diagnosis too.

Yep its common. Our nhs one took on the concerns of the private paed but diagnosed something slightly different. But we have support so we are happy

If the diagnostic team meet NICE guidance on diagnosis then there is a absolutely no justification for anyone not accepting diagnosis .

A lot of the issues around private assessment are not around asd disgnosis per se. The challenges come when private clinicians make recommendations for provision or support.

We were specifically told by the senco at my daughter's school not to go private as the LA don't pay any attention to private diagnosis.
We therefore had to put up with a 14 month NHS process to get the diagnosis we could potentially have been given in just a few weeks had we gone private.
It's pretty frustrating but also just another example of how ridiculous the whole system is for SEN children.

There are a bunch of misconceptions on this thread.
Op, if your daughter has support needs she is entitled to that support according to the code of practice for special educational needs, regardless of any diagnosis. Any support she is offered should meet her needs. This is usually provided by the school in the first instance from their budget which includes funding elements to meet the needs of children with SEN. Once the school has attempted to support your DD to the limits of their "best endeavours" they can ask for support from the local authority via an EHCP.

On the other hand, a diagnosis is not sufficient in and of itself to get an EHCP as our SEN system is very deliberately needs led, not diagnosis led. If your DD doesn't need an EHCP she won't get one with or without diagnosis.

If your daughter has such significant needs that she needs to go directly into specialist provision, then again this can be accomplished without a diagnosis but you would need EHCP; you would probably be getting support from portage or other preschool service if so.

@BurnedToast Thanks for that, I'll have a read. All I want is for her to be supported as she needs, whatever those needs are.

@JMAngel1 I don't want a diagnosis. I want there to be absolutely nothing wrong with my child whatsoever. Honestly, I'm quite heartbroken about all this. However whatever it is that is going on, I need to know so that it can be dealt with in the best possible way for her.

Thanks everyone. Your input is really helpful. I'm so new to all this, DD is my eldest. I honestly don't (as far as I know anyway) even know any other children with ASD or additional needs. So I'm on a huge steep learning curve at the moment.

On the other hand, a diagnosis is not sufficient in and of itself to get an EHCP as our SEN system is very deliberately needs led, not diagnosis led. If your DD doesn't need an EHCP she won't get one with or without diagnosis.
This is key.
It's why when people say 'we have paid for a private dyslexia assessment and primary had them working with a TA so why aren't secondary doing their job and providing support', people have to point out that having dyslexia doesn't equal TA support or intervention automatically and there's barely enough TA support to staff the base and cover EHCP children.

Equally, having had support further down doesn't guarantee support in the next phase. I would seriously look at speaking to the school SENDCO and look into EHCP assessment, which does take time.

I understand completely framedinwhite and there are 2 separate issues.

Diagnosis is important for your dd if she has asd. It will help explain, guide and inform you and those that support her.

Support and provision in school / education, whether with or without EHCP is based on need. Having a diagnosis helps guide the type of support needed.

I’ve heard quite a few people say private diagnosis won’t be accepted but I’ve never actually heard it happen.

My son was already being seen by an NHS paed when he had his private ASD assessment. I sent the report to the paed and she wrote a letter on NHS paper accepting the diagnosis.

Also in my area (Herts) many of the NHS community paediatricians offer private diagnosis so the names are known to most professionals involved.

The other side to this of course is if they can turn down your reports on the basis you've paid for the result, then surely you can argue the same for LA reports. confused the whole thing is nonsense. A SEND tribunal would certainly treat all reports equally.

This ^

LAs will often state that they don't accept reports commissioned by parents but, in reality, they have no choice. You just need to push through the bullshit and be prepared to appeal to the SEND tribunal.

Any member of LA staff who thinks that a diagnosis has been 'bought' by parents has a responsibility to report the professional who made that diagnosis to their professional body. They don't do that because it is the privately commissioned reports that record children's needs accurately and make recommendations for how those needs should be met that are likely to be effective. LA employed or commissioned professionals, on the other hand, often have their hands tied. In out LA they are only allowed to recommend provision that is available in mainstream schools.

SENCOs will often spout LA policy as if it is law. It isn't. There is not enough money available to meet children's special educational needs and they use this misinformation to weed out the parents who don't have the skills or resources to find out the truth or argue.

If anyone tells you that the reports you have commissioned are not acceptable, tell them to address any concerns they have about them to the author or their professional body.

Apply for an EHC needs assessment now and be prepared to appeal a decision not to assess.

The IPSEA website has lots of helpful information and a model letter you can use to apply for the assessment.

You need to make sure that your reports include clear recommendations for school provision as it is the recommended provision that informs whether an EHC Plan is issued.

we were told over 10 years ago by LA it doesn`t accept private diagnosis! Its been common knowledge forever, surely you knew that in your research op?!

we were told over 10 years ago by LA it doesn`t accept private diagnosis! Its been common knowledge forever, surely you knew that in your research op?!

You were conned. Of course LAs accept private diagnoses. They say they don't to discourage parents from obtaining decent advice and evidence but every LA will capitulate when they realise that an appeal to the SEND tribunal will be successful.

Some private companies inc. Lorna Wing provide a comprehensive screening service which will let parents know of the likelihood of their child having one or several ANs.

Unfortunately, some parents believe that this procedure is diagnostic when it isn't, some parents refer to it as an assessment, when it isn't.

LW call theirs 'Pre-diagnostic consultations' www.autism.org.uk/services/diagnosis/diagnostic.aspx

NAS mention private assessments possibly not being accepted by LAs. www.autism.org.uk/about/diagnosis/children.aspx
"Private assessments. Private diagnosis is an option, if you can pay for one, and can reduce the waiting time. The costs of private assessments can vary, so it’s a good idea to phone several services to ask about costs, what this pays for and whether any follow-up service is offered.
Some local authorities may not accept the results of private diagnoses. They might insist upon an NHS diagnosis before they will provide services to you and your child. For this reason, we suggest that you stay on the waiting list for an NHS assessment even if you also decide to go privately. Find diagnostic services in our Autism Services Directory, or contact our Autism Helpline."

smellybellynoonoo I believe the reluctance or willingness to accept private dx varies from LA to LA.

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!

Can you see the complexity that derives from these specialists being privately funded? What could possibly go wrong?

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

It may seem like a very different situation, but any criminal case in court will have well respected specialists on both sides who provide their own assessment and completely disagree with the experts from the other side. They will be cross examined.

we were told over 10 years ago by LA it doesn`t accept private diagnosis! Its been common knowledge forever, surely you knew that in your research op?!

In the context of an ASD diagnosis, the notion that an LA won't accept a private diagnosis simply is not true. It doesn't happen. No-one in a local authority can say "We do not accept that your child has ASD" if they have been diagnosed by a diagnosis by qualified professionals following NICE guidelines.

The LA may dismiss a recommendation that a child for example needs a specialist placement, because that is an educational decision, not a medical one. But they can not dismiss a clinical finding made by a qualified clinician(s)

There are many many reasons why it is actually beneficial to be part of the NHS diagnostic process, because it provides links with other professionals, there are established practices and pathways that it helps to follow e.g referral to panels etc. that only happen via certain paediatricians.

So, it may be that the route to support is not made quicker having a private diagnosis, and some LAs may insist that the NHS pathaway is followed whether or not a private assessment has taken place, but that does not mean that the private diagnosis is not an accurate and valid diagnosis.

Can you see the complexity that derives from these specialists being privately funded? What could possibly go wrong?

What an earth do you think could "go wrong" FinallyHere ?

There is no financial incentive to diagnose a child with ASD. The clinicians get paid for the assessment, not the outcome. Unless you are saying these highly qualified HCPs (who are often the same ones who work in the NHS) are open to bribery ??

Can you see the complexity that derives from these specialists being privately funded?

At least the parents don't employ the clinicians and tie their hands with regard to the recommendations they are permitted to make.

A parents' privately commissioned report is a great deal more likely to be written ethically and without bias than one commissioned by an LA.