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?

@AmericasfavoritefightingFrenchman

It obviously in an ideal world should not effect self esteem but there are people who won't readily admit to an underperforming / Ill behaved child without reason. In some quarters there is a view (wrong though it is) that poor behaviour is the result of an undiagnosed neurodivergent disorder in the majority of cases. In a similar fashion low academic grades aren't a lack of ability of intelligence but again a manifestation of neurodivergence. I can see in some instances parents exploring potential diagnosis based on these features alone especially with a little peer pressure.

Yes, many children I teach will have additional needs with no diagnosis, I do actually know my job.

I do also know that without a diagnosis on the system, those needs may not be immediately obvious. You are assuming that the school will somehow have those needs documented and approaches detailed on a shoestring budget and with an SEN department that has been stripped to the bone over the last decade.

So we have kids who are have additional needs that should be raising flags that no one has the time or resources to deal with going into classrooms with nothing on the system. I can learn over time how to deal with them, but that generally happens when problems occur that could have been avoided with upfront knowledge.

An autism diagnosis makes a huge difference. As a parent of a daughter with autism and adhd, who masks incredibly, school will listen when I say that she must be allowed to doodle (on a separate piece of paper) and not told to get eye contact from a teacher. She gets sensory overload in exam rooms and is allowed to do them in smaller rooms.

When I met with her SENCO she was only allowed to do exams in smaller rooms because her report, written by a psychologist / SALT team had noted her sensory issues. The SENCO could give her extra time based on school assessments but dd1 doesn’t need extra time if she isn’t in the main exam room. Her sensory issues are such that sounds of clocks ticking, pens scratching, teachers footsteps and fluorescent lights massively overwhelm her.

We had to go private for her assessment because the waiting list in our area is 3 years. The people who really suffer are the children whose parents can’t afford private assessments. They’ll not be able to get accommodations at schools like private rooms.

They can have needs which seem invisible in school, because of masking, but then break at home at the end of the school day.

My primary child is one of those children. School said “fine when here” and seemed to think I was making the whole thing up. She wasn’t “fine” at all. The the stress of school, and being forced in despite her signs of distress in the mornings and after school, led to a full blown breakdown where she was a risk to herself and others. She was fast tracked through CAMHS, diagnosed with ADHD and still can’t attend full time.

The “needs are supported without diagnosis” is absolute nonsense. It just isn’t reality, and I know quite a few parents with autistic girls who mask in school. For my DD it is an invisible condition, to those who don’t know what they are looking for. But the reality of it, behind closed doors, is heartbreaking.

I don't think teachers should ever be out in the situation of having to infer medical conditions of any kind; they simply aren't experts.

The problem then lies when waiting lists are so long in that parents will say that a child is awaiting diagnosis and in the interim can the school assist in supporting with the assumption of diagnosis. It then becomes a matter of teachers and parents working together on an assumption and that must be challenging .

Those are failings in your school and SEND dept not a reason for more people needing to be diagnosed. I know exactly the pressures SEND provision in schools is under but the COP is very clear provision is based on need not diagnosis and if you Le setting is giving the message to parents that provision is dependent on diagnosis you are part of the problem.

*with ASD (although also waiting for ADHD assessment!)

Thank you

Separate invigilation within the centre doesn’t require a diagnosis.

Those are failings in your school and SEND dept

I think you will find that it is the situation in schools across the country, SEN provision has been cut to the bone.

Given the reality, telling parents that they can access support without a diagnosis, when actually a diagnosis is going to be useful in trying to get the school to provide the support is wrong and unhelpful.

not a reason for more people needing to be diagnosed.

If a child has autism, why should they need any reason to be diagnosed beyond the fact that they're autistic?

None of those things require a diagnosis, I can see why you may believe that they do as that is what you have been led to believe but legally that isn’t the case. I am sorry your daughters school has a SENCO who doesn’t know or understand the SEND code of practice.

But isn't this a circular argument?

Provision should be based on needs, but needs can only be fully identified by a diagnosis.

Very often the needs of a child may not be obvious without a diagnosis because teachers aren't medical professionals. And nor should they be expected to step into that role. It's deeply unfair to them.

Needs lead to a diagnosis, not the other way around. The needs exist with or without the diagnosis.

Provision should be based on needs, but needs can only be fully identified by a diagnosis.. Why do you think needs can only be fully identified by diagnosis? Diagnosis doesn’t list needs, it states that you fulfil a diagnostic criteria.

If you teach hundreds of kids in a week, it’s not unreasonable to think you might notice patterns of needs, behaviours and responses that might let you be fairly decent at trying out helpful approaches with particular children regardless of diagnosis.

And to come back to this: bollocks to this too.

Suggesting that parents shouldn't worry about getting a diagnosis because it's reasonable to expect that all the teachers who see them a couple of times a week should be 'fairly decent' at trying out helpful approaches with 'particular children' is just bizarre and utterly ungrounded in reality.

And that's what I mean by it being circular.

Needs lead to diagnosis, but diagnosis leads to a fuller identification of needs.

A PDA child, for example, needs a different approach. Without a diagnosis, a PDA child could be treated in many different ways, all of which would be inappropriate and ineffective. The diagnosis of PDA would make a difference. Teachers - because we're talking about school primarily - can't be expected to guess what's going on. A diagnosis can provide greater insight of needs - especially as lots of our autistic children mask, and the needs may not be evident without a diagnosis.

As I said, circular. And without both components being properly addressed, the child suffers.

I've just cross-posted and answered this with my other comment.

Needs aren't always evident, but when you have a diagnosis it can be possible to identify hidden needs which may be driving behaviours. Unmet, unidentified needs can manifest in many different ways and it's not always obvious what the need is.

Teachers are not medical professionals and yet without a diagnosis, that's what we're expecting them to be.

In addition, medics certainly don’t always get the right diagnosis, see attachment for example. It is vanishingly rare for someone on the ND awaiting list in our area to come out with anything other than an asd and/or adhd diagnosis. Attachment, FAS and various other possible conditions don’t even get a look in despite the fact as another pp has said they can have an almost identical presentation

Interesting that you have cited PDA which even the medics can’t agree on!

Again, what makes you think that unmet needs that drive behaviour can only be identified through a diagnosis? It makes no sense.

I have experience of two schools where the SENCOs clearly don’t know the SEND code of practice. Given they’re teaching 3/4 of the week I’m not surprised they’re too busy to know this stuff. I would say the reality is that most SENCOs are overworked - like most teachers.

My other dd - who also has autism and pda syndrome - was able to get melatonin to help her sleep. This is only available from a paedetrician with a diagnosis of autism.

That is absolutely not true, I know multiple CYP with adhd diagnoses who are prescribed melatonin. In addition other sleep medications do not require an asd diagnosis to be prescribed.

The provision the child needs is based on needs, not diagnosis. So your example of a child with PDA (who btw is unlikely to get a PDA diagnosis on the NHS in the majority of areas) should receive the support they need before they are diagnosed. Their needs don’t magically appear or change on diagnosis.

If their parent applies for DLA a diagnosis isn’t required to fully identify what support is needed as the support required doesn’t change just because they have a diagnosis.

Social care needs don’t change just because they have a diagnosis.

Educational needs can sometimes be hidden and assessment (not an assessment for diagnosis but a wider assessment) is needed to fully establish needs. This applies whether the child already has a diagnosis or not. And a diagnosis isn’t required in order to access such assessments.

You don’t need an autism diagnosis for melatonin. I have a DC who doesn’t have ASD, but does have other complex needs, who takes melatonin.

I cited PDA because it's a clear and obvious example where a different approach is required.

I don't have PDA children, and I'm not PDA. The main argument for PDA is whether it should be classified as distinct and separate from autism, or whether it's just a sub-category of autism. It's a technicality really as the diagnosis letter typically outlines the PDA-type needs.

And we come back yet again to diagnosis and needs being closely wed together.

I'm not aware of any stats on incorrect diagnosis. Or of how many children who go for assessment receive a diagnosis.

Tbh though, I wouldn't be surprised if lots of children on the waiting list get a diagnosis because the waiting list is so bloody hard to get on! In our area, countywide you need an SALT assessment, an Educational Psychologist, ATS assessment, and a report from the school - with all of those agreeing that the child demonstrates signs of autism. You can't even get on the waiting list without those. And yet, in our area I could give you details of countless, countless children who come away without a diagnosis. The local Parent Carer FB group is full of discussions about the quality of care they receive from paediatricians.

I really hope you're not starting to head down the whole "autism is over-diagnosed" nonsense because that really is offensive. It's incredibly difficult to get a diagnosis and in my experience, paediatricians are reluctant to hand them out.

As well as being autistic myself, with diagnosed autistic children, I was the SEN school governor, and I also ran/co-owned a nationwide support group for SEN parents and children. So I've heard literally thousands of stories over a period of years of parents who have gone down this route. Diagnosis matters.