Majority of child autism referrals will be rejected under new criteria SW England

[noblegiraffe]

A story in the Guardian says that on 1st March, NHS South West England introduced, without warning, new criteria for accepting autism referrals.

These include risk of education breakdown, risk of family breakdown, or very low communication levels, which is an extremely high threshold.

https://www.theguardian.com/society/2023/mar/26/children-put-at-risk-as-nhs-autism-assessments-are-cut-back

As a teacher, this is horrifying. A child being diagnosed with autism means that the support can be put in place that may prevent an education breakdown or family breakdown in the future. This will mean that things have to reach crisis point before a referral is even accepted.

Schools are supposed to provide support per need, without a diagnosis, but resources are so scarce that those with a diagnosis are obviously prioritised.

The story also says the new approach brings the SW in line with services in the rest of the country. So autistic children are being denied a diagnosis across the country?

I think it’s all a bit of a mess.

Those with most significant needs, such as DS, are diagnosed earlier as it’s really, really obvious usually (non verbal). But they have almost no services such as speech and language, and getting into the right special school is like going into war!

I do think there is over diagnosis of developmental conditions such as Autism, Tourette’s - amongst kids at mostly teenage level who could well be diagnosed with anxiety instead - because their problem is not a developmental condition, it’s something quite different.

However CAMHs is also totally over run. It is also stuck in diagnosis that I don’t think are fit for purpose anymore.

There is way too broad categories now for diagnosis where there is no differentiation of severity. And yes for me DS is much more severe than someone who is mainly suffering from anxiety. He is non verbal and so many other things, needs 24 hour supervision and care.

So I can see why an area would actually be forced to introduced some kind of severity impact assessment themselves.

But it’s all, as I said, in a bit of a mess.

Diagnosis matters.

It really does. And for all the going on about how 'decent teachers' should somehow spot needs and come up with approaches all individually in their own classrooms in a couple of hours a week, what exactly is then supposed to happen when that child leaves school and goes to college, or university? And then enters the workplace? Are those posters going to continue to argue that reasonable adjustments will be made seamlessly from institution to institution with no medical diagnosis?

Why are you arguing with me? Perhaps it’s an area thing. My GP said she was not allowed to prescribe melatonin to dd2 so I had to go back to the private paedetrician who assessed her to get the first prescription and now the GP can do subsequent prescriptions.

Likewise my daughter with adhd / asd was assessed by a psychologist/ salt team so is not able to be prescribed either melatonin or adhd medication. Luckily she doesn’t want either but if she did we would have to go to a private psychiatrist or paedetrician - or get on a waiting list for an NHS assessment.

That is the policy in my area.

And it's no wonder, is it?

Every public service is starved of money under a tory government and that's a fact. Look it up if you don't believe me, yet they borrow more than any other governing party, makes you wonder where the money goes....

Blame government not the nhs which is trying to prioritise its budget. Not condoning this, obvs its shit, but wake up and smell the shit that's being shovelled....

Wow this is awful.

I have an autistic teen girl. Her being aware of her autism has helped her mh immeasurably. Yet she was a typical girl presentation and almost flew under the radar. We have had so many accommodations that have made a huge difference due to diagnosis.

I am pretty sure my second is autistic but not showing signs at school. I was literally about to get the ball rolling for her.... this would out a stop to that as she is less obviously autistic to a teacher.

I have bee procrastinatinating putting my forms in...

Really interest to know where you are as that is definitely not the case where we are in terms of being referred.

Given your experience I am sure you are aware that PDA is something of a contested diagnosis.

That’s to do with GPS not prescribing the meds and needing the paed to do it. It’s nothing to do with the autism diagnosis. I am arguing with you because you stated something as a universal fact which was just wrong

Because many needs aren't obvious and apparent? Because children are in a class of 30 and the teacher isn't spending hours 1:1 with the child - and even if they were, they could be missed.

Autistic children often mask, and the difficulties may not be apparent. Or the behaviour could be driven by a need which isn't clear, common or obvious.

What's the alternative? Assume every child is autistic, just in case? So for example, a classroom with lots of information and displays can be overstimulating for an autistic child and make it hard for them to concentrate. That's generally the opposite for a neurotypical child - displays and information can be helpful.

What do you do? Remove the displays just in case they might be autistic? But what if they're not? And what if the displays weren't the issue? Just keep guessing until somehow you get it right?

The needs of an autistic child are so complex and multi-faceted, they're not all on the surface waving at you. I genuinely find it mind-boggling that you can't see why a diagnosis would provide insight into what a child might need, or that it could provide a critical shortcut in being able to deliver what they need.

Absolutely this! It seems like with a lot of things at the moment that unless you are at breaking point then there is simply no support. I fear for a lot of children and families who don't meet the threshold and will suffer as a result. It is a serious problem that just isn't being addressed!

No, they are choosing only to see children in extreme need and ignoring the rest until their circumstances deteriorate to the point that they also are in extreme need. How can that be sensible? It would be like saying you won't see people who have cancer until they are terminal, even though by early treatment you could prevent them from becoming terminal.

SALT should be specified and quantified in F of their EHCP and therefore must be provided. If the NHS can’t or won’t fund it the LA must commission independent provision and parents can enforce it if it isn’t provided. They may have to appeal in order to get it in F.

The GP not prescribing is not the same thing as needing a diagnosis to have melatonin.

I'm in Gloucestershire but previously London.

I don't really want to provide anecdotal evidence because we could all do that, but my DD was missing one of those things on the list (ATS) and it was touch and go about whether the paediatrics dept would refuse the referral. After much persuasion, it was allowed to go through - and that's with an Ed Psych saying probably autistic, SALT requesting "urgent" paediatric assessment, and a functional age range of <6 at biological age 10 yrs. Was all missed/dismissed until Y5 of school. As I say, one case and anecdotal, but I'm just saying I can vouch for this rigorous approach on a personal level. And obviously saw countless, countless examples of the same among our SEN parents.

Yes, PDA is a contested diagnosis but broadly paediatricians agree that there are children that present who have a difficulty with demands, and are demand-avoidant. Without a diagnosis, even just of autism, those children are typically labelled naughty or difficult - almost universally.

Quick question, how does the child having a diagnosis solve the quandary regarding the displays? It doesn’t because the diagnosis doesn’t change the need. The problem
will be exactly the same the day after the diagnosis as it is the day before.

I totally take on board those who say that having a diagnosis has helped them or their children come to terms with and have a greater insight into their difficulties and of course believe this has value. However in a massively under resourced and overstretched system where choices do have to be made (however much I wish it were different) it does seem that a number of people are seeking a diagnosis in the belief it will open doors. And more depressingly a number of professionals are using a lack of diagnosis to gatekeeper resources and support, leading to a vicious circle.

Diagnosis matters.

Of course. But in order to receive the vast majority of support a diagnosis isn’t required. If you were a SS governor and ran/co-owned a nationwide support group for SEN parents and children you must know the statutory duties don’t depend on a diagnosis.

I totally take on board those who say that having a diagnosis has helped them or their children come to terms with and have a greater insight into their difficulties and of course believe this has value.

Why are you refusing to take on board that having a diagnosis can help people who deal with that child have a better understanding of their needs?

According to this SALT, EP and ATS isn’t required prior to referral.

This is horrific. We are in the South West. 2 of my dc have a diagnosis of autism, both 6-8 years after I raised initial concerns. Other dc has recently got the "assessment request has been approved, see you in 15ish months for your first appointment" letter. This is after years of me begging for help and him attempting suicide. It shouldn't be this hard.

This wasn't the criteria a year ago for my dd in the SE. She was diagnosed right on the borderline so it wasn't super high threshols for us. However she is my third with sen, my third with a ehcp. It has always been the case that the threshold to get a ehcp is extremely high and imo LA font like giving support at the best of times.

I picked the displays thing at random off the top of my head but you could supplant one of many different approaches that an autistic child needs.

In the example re the displays, the autistic child isn't going to be screaming and pointing at the displays - but they could be finding it hard to focus, struggling to understand instructions, shutting down and becoming non-verbal. Or alternatively they could be disruptive, loud, refusing work. Neither of these would be obviously related to the displays.

The manifestations of the behaviour are manifold, hence why it's not easy to determine the cause.

Removing displays for a neurotypical child would be counterproductive as children find them useful, instructive and generally uplifting.

If you know a child is autistic, you could immediately look at their environment and identify things that could be changed straight away. It may help a little bit, it might help a lot. But understanding what an autistic child is likely to need, and what they are likely to be struggling with enables the teacher or TA to pinpoint what is driving behaviours. Because those behaviours could be a very, very long way from what the need actually is - and that's why it's so difficult to understand what's going on unless you have a diagnosis.

As I said, you might inadvertently hit on something that helps a child even if you don't have a diagnosis. But you might not understand WHY it's helped the child - and that's important because knowing why something helped means it can be replicated and broadened out. Also, if you don't have a diagnosis it might take you a while to get it right - and you could actually be making things worse if the child isn't autistic.

It's really not the teacher's job to guess. I know it's a different scenario but imagine sending a kid to school with an Epipen and saying to the teacher - no idea what his allergy is, but keep trying and if you spot what it is, give them a jab. Obviously I'm being ridiculous, but the principle is the same - the teacher needs to be equipped with the full information to keep a child safe, whether that's physically or psychologically.

So what’s your alternative? Leave the least able and most impacted and most vulnerable, the ones whose lives are already so limited and small, with life expectancies equivalent to centuries ago, to sit in a queue?

Don't be daft, the alternative would be to properly fund and staff the NHS diagnostic path so that any child with autism can access a diagnosis in a timely fashion.

I don't think anyone has a problem with children in crisis being bumped up the queue.

Yes those are all the things a school with decent SEND provision will be doing anyway. I fully accept that many schools do not have decent SEND provision. The idea that autism doesn’t cross anyone’s mind with out a diagnosis is just absurd. Every mainstream school in the country hais multiple students with ASD. If an autism diagnosis came complete with a full package of clinical support for families, schools and other service providers then I would be all for getting as many people diagnosed as possible. But it doesn’t, it literally gives a label which sadly people are being told they need in order to access services which they are actually entitled to without the label.

The idea that autism doesn’t cross anyone’s mind with out a diagnosis is just absurd.

The idea that thousands of teachers should be individually diagnosing autism in kids that they see a couple of times a week based on needs that may not be immediately apparent is absurd.

I think people DO have problem with it, because if there was capacity surely they would be seeing people beyond this new criteria?

Of course we should be seeing everyone who needs it but these more vulnerable individuals have obviously been being lost in the queue and ARE being bumped up.