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?

Again, a diagnosis isn’t required. Yes you need proof that doesn’t have to be in the form of a diagnosis. Yes it’s difficult. I didn’t say otherwise. Accepting unlawfulness because people don’t have a diagnosis means many don’t have their needs met even without rules like those coming in in Bristol. Personally I don’t think that is acceptable.

In my experience they take you more seriously with a diagnosis. But only if they've actually heard of it

You don’t need to prove you have autism, you need to prove the impairment. There’s many ways of doing that, a couple of examples are HCP involvement that isn’t focused on a diagnosis and same way people do to get benefits/a blue badge etc. and a referral for assessment in the first place.

I’m loving this mythical world where PIP is just handed out without any diagnosis along with support in schools and reasonable adjustment across all sectors. Not seen evidence of it anywhere.

How the f do you prove executive functioning/lack of? by not turning up / turning up late for appointments, then you get sanctioned.
You lose paperwork
You miss deadlines
you struggle to complete forms
you give up and think you are a looser
you try and end it all

You have a shitty life and you know that a diagnosis would allow you to explain to people/get a basic level of understanding/benchmark to enable you to move forward.

You as a woman/girl appear to be coping. but inside your are struggling badly.

This is indirect discrimination, basically. If women and girls are less likely to be diagnosed (yet again) because of this, then their human rights to a healthy and happy life and to reach their potential are being denied. It's that simple.

Please quote where I said it was “just handed out”. You can’t because I didn’t. I did not say it was easy. More than once in this thread I have posted I have said you often have to appeal for things.

I have personally supported many to apply for DLA/PIP/LCW/LCWRA, EHCPs, blue badges, DFGs… without a diagnosis.

jlpartnerrs

It absolutely is discrimination.

As I said, I do think a diagnosis is important, for many reasons.

One example of how to prove executive function difficulties would be an EP assessment which would demonstrate the impairment. There’s many other ways.

You don’t need to prove you have autism, you need to prove the impairment
And how do I prove I’m impaired by a condition that I haven’t been diagnosed with? The assessor will pull you up on this and the report will specifically mention that you have no diagnosis to prove your claim that you have autism. You claim to have anxiety but you aren’t receiving treatment (yeah because I can’t access treatment without a diagnosis). You aren’t engaging with autism support services (because I can’t get referred to them without a diagnosis). Etc. Diagnosis is the key to support and benefits, they claim you don’t need a diagnosis but when it comes down to it you do.

This is a long time coming.

It's also morally fucking repugnant.

It makes me so angry I can't even look at the cunts who voted for this shitshow.

My Dd only got her EP assessment because of her autism diagnosis. She was masking her executive functioning difficulties too.

Let's not mention the fact that many ND parents without a diagnosis are already using up their spoons/executive function (what there is of it) on their children's needs.

And how do I prove I’m impaired by a condition that I haven’t been diagnosed with?

Well the impairments exist prior to diagnosis they don’t just start on diagnosis otherwise one wouldn’t get a diagnosis in the first place. There are many ways someone could prove they/their DC have an impairment before diagnosis/without a formal diagnosis. For example, the evidence they used to get a referral for diagnosis in the first place, evidence from school.

My Dd only got her EP assessment because of her autism diagnosis.

A diagnosis isn’t required for an EP assessment so that may have been the case for your DD, but it didn’t need to be.

But many girls mask in school. On the surface they’re swans and underneath they’re paddling like hell.

I am pleased you have achieved this. Can I ask what evidence you use as it will really help people to know what sorts of things they can use?

A lot of people cant or dont accesss any help so there isnt any other evidence they have other than their diagnosis.

Need can be really hard to determine if you don't really know the child well though.

If you have a child regularly hanging out in the loos when they should be elsewhere - are they skiving, or are they sensory overloaded and seeking quiet time?

If you have a child who turns up to class without the correct equipment and stares out the window for half the lesson, are they not arsed about learning, or are they disorganised and distracted because of poor executive function?

If you have a child who doesn't make eye contact, ignores you or comes across as abrupt or direct, are they being deliberately rude, or do they have communication difficulties?

You could say you need to talk to the child and ask them, but many won't give you a coherent picture of what's going on for them, especially if they do have communication difficulties, or are masking, or ashamed of their problems. And of course many children will also be full of excuses for misbehaviour. So how do you tell the difference between misbehaviour and need? How do you know when to punish or support?

In a busy secondary school, staff often don't spend long enough with each child to see the bigger picture. Also I doubt the average teacher has had much in depth training into SEND, unless they have a personal or professional interest in it. This is why we have educational psychologist to advise and support, but oh that service has also been decimated as well.

For example, for EHCPs you can submit SARs to school and any HCP you have had involvement with (if you have been to them about the difficulties for e.g. if you have been to the GP to get a referral somewhere or for something unrelated but needs were seen), follow up meetings/verbal conversations e.g. with school with emails to get a paper trail to gather evidence for an EHCNA request. If refused you can appeal. Sadly many do have to appeal, sometimes more than once. If you are eligible for legal aid that can fund assessments. If not there are charities such as Parents in Need that can sometimes fund assessments.

When you are sat in front of / on the phone to the DWP / Benefits agency - even if they are lying to you, you have no comeback without a diagnosis, basically. There's no way I would have spent so much time and effort at the GP / repeatedly / on the phone to / chasing up / all of this if I didn't have to. It's taken me over 7 years to progress to this point.

I am exhausted. I don't have the functionality to argue with the system any more. The fact is I have children and am in a better place than I have been for a while, but right now I want to scream at the system. It's rigged to palm people off. If I didn't have children I'd be checking out. To be told that you are obviously not doing it right (again, ffs this is a feature of having an ND, being told you're not doing it right) because of whatever is really frustrating and invalidating.

Whatever "should" be happening - it's not. And I'll go back to my OP which is I thought that this was getting better for the generation below me.

You provide your evidence, and the PIP assessor rebuts it by saying “but you don’t have a diagnosis, there is no proof you have autism”. And as I said, many of the things that would prove you have impairments (such as receiving support or meds) aren’t accessible until you have a diagnosis.

Thats really useful.
I certainly think you can gather evidence for a needs assessment without a diagnosis.

I'm not sure about PIP.

Im really nervous about thst. When my son ages out of his ehcp, all the annual reviews we send of DLA and all the contact with OT and SaLT will just end. Im not sure he will access anything to provide evidence on ongoing issue.

Anyone can appeal. Again I didn’t say it was easy. But it is incorrect to say a diagnosis is needed for benefits. They aren’t.

It's rigged to palm people off.

I completely agree

To be told that you are obviously not doing it right (again, ffs this is a feature of having an ND, being told you're not doing it right) because of whatever is really frustrating and invalidating.

I have not said that. At all.

And as I said, people often need to appeal.

I have done it with PIP and DLA many times too. The evidence needed is obviously slightly different as the criteria are different. For example, as others have posted on this thread their undiagnosed DC had an ED resulting in numerous hospital admission as a result of their unmet needs. They would have had evidence of hospital admissions for the ED, the need for meal supervision/support etc., she would have presumably had evidence from HCPs. They could have gotten further evidence via a SAR from the hospital notes and school.

@Spendonsend to add, whilst you still have the EHCP make sure transition to adult social care and PfA is looked at. This is much easier to set up whilst you have an EHCP, especially as if you appeal the educational content of the EHCP you can ask SENDIST to also look at social care provision.