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!

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

Exactly, Goldmandra, Diagnosistic assessment of ASD is undertaken by HCPs (NHS or private).

But the recomendations for provision come from Ed Psychs et al who are employed by the LA

But the recomendations for provision come from Ed Psychs et al who are employed by the LA

Almost all of the provision in my DD's EHCP is taken from the independent reports we commissioned for an appeal to the SEND tribunal.

It's such a scandal that it takes a tribunal to get the LA to get to that point.Goldmandra

Too many children are failed and too many families are forced to appeal in order to get independent recommendations recognised.

My Ds who is 15 is on the NHS diagnosis pathway. He was referred in July last year and has recently had his assessment. He now needs to wait again to see the paediatrician for a review to see if she feels he meets the criteria for diagnosis. It's pretty obvious from his report that he does but the paed makes the final decision. I've been told it could be another six months wait. Ds starts year 11 in September and we would have liked the process to be finished by then but it won't.

Having read the recommendations in the report the school are pretty much doing all that has been suggested already. It has though been a real battle to get him a small amount of support. Ds would not be entitled to an Echp. His coping mechanisms are very poor but he is hanging on.

The wait time is very frustrating. I can understand parents that can afford it going private. Ds has had one assessment with a speech therapist and that is it. I think it probably would have been a more in depth assessment had we gone private.

DS has had a full neurological assessment done by a clinical psychologist, a highly specialised SLT, and an OT. This was funded by the Adoption Support Fund. The conclusion was that he presents with traits of ASC. Would his headteacher accept that in his EHCP annual review ....? Nope, just insisted that she thought he has ADHD and asked why he hasn't got a diagnosis for that. I absolutely despair.

Thanks to everyone that's shared experiences and information I really appreciate it. Lots to learn here and it seems that we will have a long road ahead. Fortunately I'm not the sort of person who'll just sit down and shush if told no - I will fight and fight to ensure that DD has everything she need and if that means taking it to a tribunal or whatever then so be it.

She's only 3.5 at the moment and as I said preschool are already putting a 1-1 in place from September with no diagnosis at all, just based on what their SENCO has recommended.

We will also go down the NHS route to to ensure we get what we need from all sides.

And to those who've said 'you should have known' well why? Yes I did research, into waiting times and the process for NHS referrals locally. I had no idea that private assessments would even be questioned. But thanks for making me feel like an idiot anyway. As I've said I'm totally new to this. I know very little about ASD and has no concerns until DD started preschool in January. It's all happened very quickly. Really at home she behaves pretty much normally (though I'm now noticing things I didn't before). I'm finding it quite hard to deal with and I'm trying my hardest to do the best for my child. There's no need to be so condescending. If you've nothing constructive or helpful to add then zip it.

My dd underwent a full assessment at Lorna Wing, not a prediagnostic assessment.

We made huge financial sacrifices to do this because we were in crisis. She has violent meltdowns, attacking us, she was suicidal at age 6. The local wait for NHS diagnosis is 4 years. I wasn't willing to put her through that. Also given that it goes through CAMHS here and their first stage was to make us do parenting classes and read some fliers.

I'd rather have spent twice the money and her not have ASD.

The key - and counterintuitive - thing here is that the EHCP (which is the document which specifies the support your child gets, and also any funding given to pay for that support) doesn't depend on a diagnosis at all.

The EHCP depends on your child's NEEDS, not what causes those needs or what their formal diagnosis is or who did that diagnosis.

Obviously, for a child with high needs, there is often a series of reports or observations from different people that feed into the EHCP - so there may be SaLT reports, AST (advanced skills teacher) reports, Ed Psych reports, sometimes a paediatrician report - but equally, there may 'just' be a detailed summary of day to day classroom / other setting observations and evidence of work etc.

What gets the funding - or intervention, or placement in a specialist setting, for example - is NOT the diagnosis, but the statement of needs and targets.

Equally, as you have found, support and intervention will in the vast majority of cases precede diagnosis, as again these are based on the school / setting's assessment of the child's needs rather than what they are 'told' to do by whoever does the diagnosis.

IME the most common order of events is:

• Child arrives in setting
• Needs are rapidly assessed and support / intervention given
• Support / intervention adapted according to effectiveness of first wave of support
• Draft MyPlan / EHCP starts to be written
• Experts come in to observe and asses, and submit reports (often, again IME, simply a restatement of what the school / parent tells them, on official notepaper!)
• MyPlan / EHCP formalised and officially submitted
• Funding wrangle commences if an EHCP, eventually resolved....

Diagnosis made a huge difference to the support we received. Although dd still doesn't have an Ehcp, her school at the time (we've moved her now) refused to believe anything and put no support in. She's a classic female presentation who masks at school and explodes at home. So as far as they were concerned she was fine.

Except she wasn't and we needed them to do things at school to help her not to explode at home. The odd incident at school was always treated as a behaviour incident (telling off, sanction) and not support. She even got in trouble for asking some blunt questions to staff- they were socially unacceptable (eg about weight) UT she was 5/6 and it was clear she genuinely couldn't understand why it was wrong.

The lack of a diagnosis in that setting caused her significant harm. A diagnosis has also meant being able to apply to have the LA autism team come to her school, observe, make suggestions and write a report that we can use for Ehcp.

It's helped her enormously. She no longer feels like she is a bad person, something is wrong with her.

Just to explain the needs vs diagnosis point a little more, as i think it is critical.

I have taught children with formal diagnoses of ASD pretty much every year.

Despite the similarity of those formal diagnoses, the difference in their needs have meant that the support specified for them has ranged from 'nothing at all (other than awareness)' to 'transfer to full time special school', via 'small group support at playtime' and '1:1 support for every moment of every day they are in school'.

The difference is NOT in who did the diagnosis, whether private or NHS - the difference is in the NEEDS which they present with at school.

I would say, however, that again as an experienced class teacher, I know of nobody who has ever gone for a 'private diagnosis / private ed psych report / private investigations' who has EVER come back with anything other than a report that supports parental opinion, whereas I have had a MUCH more varied and nuanced response from those who have gone for full NHS / standard Ed Psych investigations. That does mean that I give a slightly different weight to each type when considering how to allocate scarce TA / teacher support to specific pupils, which as a school we would always do dependent on child's need not 'what the report says'.

Although dd still doesn't have an Ehcp, her school at the time (we've moved her now) refused to believe anything and put no support in.

I'm sorry that the school was so appalling. That's not acceptable. parents should NOT have to get a diagnosis to force the school to do what they should have been doing anyway - that's not how it should work, and that makes me really angry to hear of it.

(I am not saying that diagnosis isn't valuable for lots of other reasons, such as your child understanding that she is not 'a bad person'. However the link between diagnosis and funded support via the EHCP process is slightly different - again, I have taught children with full time 1:1 support via EHCP who have no formal diagnosis of anything at all, just very clear needs)

I am also a highly experienced class teacher, ASD specialist teacher, SaLT and parent of an autistic DD.

One the most frustrating issues in my experience in schools, is that teachers / sendCos rely solely on what they observe in school. For many children with ASD, especially girls, the challenges may not be observed at school. The fall out happens at home.

As an advisory professional I have listened to teachers / Heads/ sendcos talk about the child's difficulties lying with the parents or being related to "home" because they don't see the same things that the parents report.

And I have experienced it directly as a parent.

I am not accusing you of this cantkeepawayforever, but it is possible that the private reports that you take less notice of because they don't fit your experience of the child in school, may actually reflect the child's needs more fully because they take into account the bigger picture.

Yes I think it's common, sadly. In Wales where I am it's no longer possible to obtain an ASD diagnosis privately, so we have no choice but to wait. Like you I would've paid privately if it meant being seen earlier and not getting stuck in the system (I had to chase the Children's Centre and health visitor so many times just to get the referral sent, it was apparently sent on 20th of June but 3 weeks later they had no record of it so said oh the HV will have to send it again. FFS!).

Apply for an EHCP now, yourself, on Monday. For my LA it was a template letter, two sides of A4, in which I had to write my reasons.

Both of my twins have already been diagnosed with ASD by their NHS consultant, however - I’m appalled how long some people have to wait. One of my twins was diagnosed at his first MDT appointment, the other at the second, although we had already seen SALT, had portage involvement etc

I’ve done it myself because the nursery said they’d start one five months ago, urged to do so by the LA SENCO... they haven’t, so I’ve done it. The nursery fully support it, but they can’t be arsed.

It takes 20 weeks so get it going asap.

Mrs,

I can see that what I have posted might come across that way - which i didn't mean it to.

In terms of private assessments, I wasn't specifically thinking of ASD, and i did express myself clumsily. I have seen a lot of different 'private investigations / private reports' for a very wide range of different conditions over the years, and while I always read them closely and take into account what they say, they are often of a 'the parent reports concerns around the child's processing speed, and when we measured this, it was in the low average range, so we recommend daily [or twice daily] interventions 1:1 with an adult of x,y,z,p and q' variety, where the nature and degree of the child's difficulty (compared with the general cohort) are not sufficient to justify allocation of resource as intensively as the report suggests.

On the specific ASD point, I am absolutely not saying that I would ever believe that a child does not have ASD because the behaviour presented in class didn't 'match'. Nor would I suggest parents were lying or were caused by home (DS presented with many ASD traits when younger - turned out to be school-induced acute anxiety so I have 'been there' to an extent). Rightly, diagnosis of ASD takes into account behaviour in all settings.

What I am trying to explain is that specific support given in school, as specified in the EHCP, depends on the needs in school, not the formal diagnosis or lack of it or any mismatch between the 'named' diagnosis and the child's needs (as can arise when a diagnosis happens when a child is young but further difficulties and needs present in later years).

Have I just made things even less clear???

In Wales where I am it's no longer possible to obtain an ASD diagnosis privately, so we have no choice but to wait.

I don't know anything about the Wales, Confusedandworried32 but couldn't understand how private assessment could be "not possible". I did a quick google and came up with this, which suggests that private assessment is available?

dyscovery.southwales.ac.uk/clinic/children/index.html

cantkeepawayforever I agree 100% with what you are saying about allocation being made on the basis of need not diagnosis.

I think as the thread was about ASD assessment specifically, I felt I needed to clarify things on that front and I genuinely wasn't accusing you of anything.

No problem, Mrs! Been a long term and I suspect I wasn't being very coherent!

Happy holidays when they come cant!

So currently what DD is doing is behaving pretty normally at home, however the three days (well, she doesn't do full days as she can't manage them so I collect her at 1:30pm) that she's at preschool she hates transitions, gets really distressed, can't cope with the noise, doesn't ever want to play with the other children. She wants to just be 1-1 with an adult at all times and gets really anxious and distressed. She's tiptoe walking there, fixating on things, repeating questions over and over. Her speech, literacy, maths etc are also far more advanced than they expect at 3.5.

Sound like the opposite of some of the little girls posted about on here who are fine (or masking) at school and exploding at home.

TBH it's a good thing that diagnoses are not blindly accepted. There are some very dubious organisations out there, making money for providing diagnosis without proper assessments.

If it's been done through a reputable organisation e.g. Lorna Wing, you'll be fine.

framedinwhite sounds like your DD is doing well and it is great that the setting is getting support in place.

Each child is different and not all girls mask - and boys can mask too. I have worked as an advisor in early years settings and been a home visitor with Portage so have had the privilege of seeing many young children both at home and in nursery / pre-school!

I understand how enormous it can all feel. Does your LA run any parental support such as the NAS EarlyBird programme? You may need to have the asd diagnosis (another reason why early assessment can really help) but that might be worth finding out about.

Although I am a parent of an autistic dd, I only experienced the programme as a presenter, but the feedback from the parents on the programme was extremely positive and many parents kept in touch after the 12 week programme finished.

There are also NAS parents groups, which can be accessed with or without diagnosis. I'm in a local Facebook group with other ASD parents and it's very useful and supportive.

My dd finds transitions very difficult. There are lots of resources out there and ideas to try, like picture routines, social stories, timers, now and next boards.

I really like this facebook page as well

www.facebook.com/autismdiscussionpage/

He explains things really clearly