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!

They've started doing things like counting down using fingers before transitions (at home too because we're trying to tie in with exactly what preschool are doing as much as we can). They're letting her go outside to play first for five minutes with an adult before the other children go out - she hates going out in the group but she's fine with the other children joining her.

I've also made her a little picture book of her family to look at when she's distressed. Her keyworker said so far it's been game changing, it settles her quickly.

In all honestly I can't ask for more of her preschool. They've been wonderful and so concerned for her wellbeing. We're fortunate that there are only 20 children to 8 adults so the there's lots of availability for help.

We have a local Autism Centre which offers support to whole families which we can access if she is diagnosed. So that may be a possibility.

Bit late to this but, yes, not uncommon. To be honest I have seen some private diagnoses which were appalling - no evidence to support any diagnosis and at odds with NHS testing and diagnosis. In some cases the private diagnosis made some token recommendations such as OT which school had already tried and not been effective, so in the face of a permanent exclusion appeal it was detrimental.

There are some very dubious organisations out there, making money for providing diagnosis without proper assessments.

@blue25, I'm not aware of any organisations that do this. If you are, I assume you have reported them to the relevant professional bodies?

OP, it's quite important that the interventions put in place by the preshool are being formally recorded in a provision map of some sort. This will form the evidence for your request for an EHC needs assessment.

@Goldmandra They are. We've got a written report from the SENCO which explains the issues in all areas that they're seeing and what they're doing to address and help with them. It's really quite comprehensive.

...and Goldmandra similarly I trust you have reported all the corrupt professionals you allege who are in the grip of the LA. Even, strangely, diagnosticians who overwhelmingly commonly work for the NHS which to the best of my knowledge isn't paid for by the LA.

diagnosticians who overwhelmingly commonly work for the NHS which to the best of my knowledge isn't paid for by the LA.

The majority of the professionals who are on the diagnostic panels in our county are working in services commissioned by the LA.

I am working with a group of parents to address the way these services are commissioned by our LA, as we now have some evidence in the form of guidelines issued by the LA. We are yet to decide how best to approach it.

If the professionals you have described are independently commissioned by parents, you really should consider reporting them. They aren't doing families any favours if they are genuinely enabling diagnoses to be bought.

@blue25 There are some very dubious organisations out there, making money for providing diagnosis without proper assessments.

@NotAnotherJaffaCake To be honest I have seen some private diagnoses which were appalling - no evidence to support any diagnosis

Are you both talking about ASD diagnostic assessments? Because I do not recognise what you are saying.

I have worked in in the 'field' of ASD since 1985 in 3 different counties. I have worked in the NHS, in LA maintained schools and in advisory roles within the LA. I have read hundreds of diagnostic reports, both private and NHS. I can honestly say I have never come across a child who has been diagnosed as autistic who was reassessed at a future date and found not to be.

Conversely, I have known a significant number of children with atypical and complex ASD profiles, who slipped through assessment and who have only been diagnosed at later assessment when their needs were more clearly identifiable or who had subsequently been assessed by specialist clinicians with more in depth experience of the spectrum.

As I'm sure you know, there are a variety of diagnostic tools that can be used. Not every clinician is trained in all possible assessments.

Certain diagnostic 'tests' are more sensitive to identifing some ASD profiles than others. e.g. the DISCO is more likely to pick up a PDA type profile than the ADOS. It doesn't make one test better than another, but can explain why in one assessment the threshold for diagnosis is not met, but using a different diagnostic tool the diagnostic threshold is met.

I have no idea where these backstreet ASD assessment clinics are that you can simply pay for a diagnosis. But if you know of them then report them!

If, however, you are talking about the quality of the reports received from professionals, well I can accept that these may be "appalling".

I have read many brief, abrubt, unhelpful reports in my time and have a number filed away from professionals working with my own DD!

But a crap report doesn't equate to an unsafe diagnosis.

Goldmandra, that doesn't make sense.

Most autism diagnostic pathways are within NHS services, peadiatricians or camhs with SLT a common and OT/ EP a rare addition.

With the exception of the rare instance of an EP on a multiagency team none of those people are in the employ of the LA. Where are you that education is running a medical diagnostic pathway?

The diagnostic process is completely independent of the education recommendations process.

I don't have any beef with independent diagnosers, not have I alleged anywhere that parents can buy diagnosis. That was a different poster.

I think it is worth it to the OP to clarify the difference between diagnosis and recommendations.
You have often alleged that LA EPs making recommendations on SEN are hopelessly corrupted and pinioned by their employers in the recommendations they give (as a working EP I refute this utterly for myself and in my authority, which has never told me what I can and cannot recommend) but fail to acknowledge it could possibly happen that a private EP would also be influenced by a desire to please their employers (parents) in their recommendations. That isn't my experience. It's not as simple as saying LA EP = corrupted and working only in the best interests of the LA whereas independent EP = Noble, incorruptible, unbiassed, true representation of need.

It's not as simple as saying LA EP = corrupted and working only in the best interests of the LA whereas independent EP = Noble, incorruptible, unbiassed, true representation of need.

Of course it's not that simple.

I apologise for confusing you with blue when responding.

The diagnostic process is completely independent of the education recommendations process.

It isn't in our county because of how the services are commissioned. You're just going to have to take my word for that and the fact that, if you worked in our county, you absolutely would be told what recommendations you could include in your report.