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?

My daughter going years without a diagnosis caused her to need countless hospital admissions on paediatric wards which involve 6 supervised meal supports for weeks at a time. She takes up beds and hours of nursing time. Paed wards are inundated with struggling teens many of whom will be non stereotypical young people with autism who should have been diagnosed far sooner or who haven’t got a diagnosis at all but should have. That is taking resources and money that could be spent elsewhere.

Then surely you recognise at a population level autistic women aren’t ‘doing better’ than autistic men. Obviously that won’t apply to all but at a population level.

Does anyone know what these new rules will mean for my son? I've tried googling but I can't understand half of it, I think they do that on purpose tbh.

He has been accepted on the waiting list for assessment after years of being told he was too old, faffing around with paperwork, doesn't meet the criteria, a suicide attempt and camhs being useless. I really thought we were getting somewhere despite being on month 3 of a very long waiting list. I'm scared we have reached another dead end.

Awful irony that today, the first day of Autism Acceptance Week we have here many accounts of people NOT accepting the views, facts and needs of autistic girls and women.

Who’s not accepting views, facts, or needs??? Not everyone agrees that the needs of one group should be put above another. Discussing that and disagreeing isn’t “not accepting”. FFS

anyone interested in what happens when girls are not diagnosed might like these reflections from late diagnosed women from the #nowiknow campaign https://www.autism.org.uk/what-we-do/campaign/our-new-campaign/now-i-know-campaign

My DD had an ASD diagnosis (and a couple of co-morbidities) and an EHCP when she started mainstream secondary, and they STILL couldn't make consistent reasonable adjustments for her.

It was like wackamole - you'd just get all her current teachers on board, and then one would leave, or they'd be a supply teacher and it'd go tits up again!

There were also a not insignificant number of teachers and TAs with quite a poor understanding of ASD and co-mobidities, who had very little idea of how to support her. Others were great, but she might only have those teachers a couple of times a week.

I strongly suspect children without a diagnosis would stand no chance whatsoever!

I think the point that I am trying to argue is if we all accept ‘children without a diagnosis stand no chance’ that makes the point of the fight diagnosis as the key to unlock support. Absolutely yes, let’s fight to have diagnosis available more easily and more timely.

BUT let’s not get so busy fighting about diagnosis that we forget to also fight for the support that should be provided based on need. Some DC are not so ‘lucky’ as to have an understood diagnosis like ASC ever but they still have needs. Don’t let’s allow schools and therapists off the hook in the meantime because we’re so busy concentrating on the diagnosis. Fight both fights.

I agree it is awful. But people need to stop voting for the tories. This is what it was like last time they were in for years. They always try and destroy the nhs.

I'm from a family where my children, my nephew, my sister and myself have all been diagnosed with ND conditions. I am awaiting an ASD and ADHD assessment (I'm dyslexic) My son is Dyspraxic, my sister is ADHD, my nephew is ASD.

I am 52, my life has been blighted by alcoholism (My mothers and mine) severe depression, I've been a career for my sisters when I was a child and I have had a chaotic and disjointed life. I have struggled to complete qualifications and hold down jobs. I have had a terrible time with hormone fluctuations. I have struggled with friendships. I have been very unhappy for a great deal of my life.

I consoled myself with the fact that although I have had it hard, there's been vast improvements with the way that women and girls have been getting diagnosis and that things were improving for the next generations, now this? It's indirect discrimination if you ask me, because this will disproportionately affect women and girls.

I can see how an early diagnosis would have helped me get exam dispensations (And you will not get that for professional exams - I'm part qualified accountant - without a diagnosis) and for workplace adjustments - I was very badly bullied at one place of work, and I have quit before I got sacked for speaking out of turn on a couple of jobs. I now work in the third sector with switched on managers - it really does make a difference.

To deny a diagnosis because children are not in crisis is to deny them a fair chance of a productive, happy and healthy life based on the discussions I've had with my family and other ND friends.

To deny a diagnosis because children are not in crisis is to deny them a fair chance of a productive, happy and healthy life based on the discussions I've had with my family and other ND friends.. But surely to deny a child in crisis is not tenable? It’s not a case of withholding it’s a case of where to use finite resource. I wonder what the numbers actually look like? Are we using the same size budget for a larger population?

TomeTome why are you arguing in favour of non-crisis cases being kicked off the waiting list instead of arguing in favour of increased resources in order to improve waiting lists?

In many situations( particularly amongst those who mask) being kicked off the list will hasten individuals being turned into crisis cases.

In our area you can't access the sleep clinic without a diagnosis. You can't access sleeping medication without the sleep clinic.

In case I didn't make myself clear upthread what I was saying / arguing against is that getting a diagnosis is pointless because the school should put interventions in on the basis of need, well
a) That does not happen at secondary school, it's a free for all at that age and if you don't have a dx by the, then good luck and
b) no GP/Employer/Agency will make any reasonable adjustments without a diagnosis and
c) If your children also happen to be ND then getting help will be even more difficult without a family history.

So regardless of whether the dx will make a material difference (I argue that it does make your case easier to establish) at school the longer term implications of non diagnosis are expensive, life limiting (MH and suicide for example) and disadvantageous to the individual, and the people more proportionally affected will be women and girls.

If your local sleep clinic won’t see those without a diagnosis you can ask for a referral elsewhere.

A diagnosis is important but a most certainly does happen. Schools must make their best endeavours to meet a pupil’s SEN diagnosis or not. Yes school are stretched for funding/resources but that is the same regardless of whether the pupil has a diagnosis or not as diagnosis alone does not result in additional funding. And EHCPs most certainly give provision even without a diagnosis. Legally for b you don’t need a diagnosis to be considered disabled under the Equality Act. Anyone refusing to make reasonable adjustments purely because someone doesn’t have a diagnosis is not acting lawfully.

Our sleep clinic covers about a 2 hour radius. It isnt viable for families to go several hours away. It just is not as simple as you seem to make out.

I live an hour from the sleep clinic as it is

I didn’t say it was simple, but it is possible. Many families of DC with complex needs often travel hours for care, including us.

The DWP / Benefits agency will not give any adjustments for anything without a diagnosis. Even with one they are "difficult"

If you mean in order to claim benefits, a diagnosis isn’t required.

If mean as an employee, that is unlawful but yes many do, but they can be challenged and are often just as likely to be “difficult” even with a diagnosis.

I’m in the process of applying for PIP for my autism. I’ve been advised that without a diagnosis I simply wouldn’t be awarded it. Yes, technically you don’t need a diagnosis to be awarded PIP, you just need to demonstrate your difficulties. But when you apply without a diagnosis, the assessor questions whether you are actually autistic. They purposely write “the applicant has no diagnosis to support their claim that they are autistic”. And then you don’t get PIP.

I mean in my experience no you are sanctioned and bullied and employers don't make adjustments they just sack you. When you consult employment solicitors they advise you that without a diagnosis that you are unlikely to win.
It's no good pretending that you don't need a diagnosis when actually even with one you will still find this difficult - without and where's your proof?

You have been incorrectly advised. Even with a diagnosis many people are turned down and are forced to ask for a mandatory reconsideration and appeal. I have supported many to successfully apply for PIP before diagnosis/without a formal diagnosis.

So how do you prove you have autism and the difficulties that entails without a diagnosis then?