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’ve tried to get my teen referred and it was rejected because he is academically very able and well behaved. His social and mental health concerns were not a good enough reason alone sadly. Ive got him to read books on autism and that is how I approach things with him and he seems to be better for now. I used to work with high functioning autistic teens so I see the similarities. He behaves very much like Sheldon from the Big Bang theory. I hope that schools will understand that children that are high functioning and well behaved are unlikely to get a diagnosis now.

As for lockdown making things worse, It definitely had an impact, although my teen handled lockdown fine he emerged without any desire or ability to make friendships and seemed to lose any social/ conversational skills he might have had.

My autistic teen is at a girls grammar school and she's not the only one diagnosed. Ability really shouldn't be an issue (if anything it's not surprising in a way her grammar school has a collection of autistic girls)

It is worrying going forwards if not showing behavioural issues st school means you can't get a
Diagnosis .

My autistic children are home educated, you cant access OT etc before diagnosis,OT put for example window guards on the windows so one of my children cant jump out,made out of wood unlike metal pressure ones that can be pulled off.
You cant also get medications,like melatonin etc a hormone autistic people often lack.

Since when going to a school etc should have any relevance to the healthcare,its like if you are unemployed you cant see a GP, because the employed people are more important.

To the OP, good find interesting and worrying article.

It is massively worrying as undiagnosed autism often can lead so quite severe mental health struggles and poor relationship choices with abuse and domestic violence being common. Girls often mask and if they’re like my daughter their traits can be hugely misunderstood.

My children and I were all accelerated up the waiting list. All because we were left undiagnosed. My children have cost the NHS thousands as a result. People need to realise the longer you are left the more likely you will end up being accelerated up the waiting list and so the mental health crisis will continue to grow.

It’s absolutely nuts and outrageous.

You are right it is discrimination,I know many local children with asd who are home ed,inc my own.

Without diagnosis you cant access occupational therapy,specialist dentist,medications etc.

It's awful that so many children who need early help will go undiagnosed. I imagine the increase in awareness of ASD in recent years and the decrease in stigmatisation from having a label of ASD has led to a huge increase in referrals. And the NHS can't cope with it. The money to properly assess and then support all of these individuals with traits/potential issues just isn't there. Presumably private assessments will still be an option (not ideal for most, I realise)?

@jenandberrys

I have taught for 23 years and a parents of an autistic son.

A diagnosis is valuable.

As it happens my son presents obvious traits - stims, echolia, self-harms under stress so his primary school funded a TA for him before his diagnosis. I still wanted the diagnosis and I needed the ECHP because as a secondary teacher I know how invisible SEND pupils are. I doubt he’ll get a TA in high school and even if he does he might just be stuck in the bottom set so his TA can be used for classroom management. With the plan I can argue that he is an intelligent boy, can manage without a TA but will need sensory breaks and counselling. In underfunded schools the plan gives the weight to my argument.

More widely, the diagnosis has now meant he is accepted onto holiday funded clubs for free. He won’t go btw but that’s just one example of what support is now available to us.

I am not a shit teacher either.

It is going to be the ones who mask and are more likely to end up with significant mental health struggles and vulnerabilities that are going to be the most impacted by this. Thus undoing the huge headway we’ve made in recent years re diagnosing autism in women and girls. It is discrimination as we now know girls present differently, are more likely to mask and education is less likely to break down.

In an ideal world, everyone who needs an assessment / treatment for any issue would receive one.

The reality is that isn't the NHS any more. The commissioners are not paying for that. The clinicians can't deliver that and the majority of people waiting on any waiting list will never make it to the top and it's only going to get worse with projected growth.

At least this is explicit and you know where you stand. It will be happening across many areas of healthcare moving forward.

Unless something changes in the NHS.....

Having a diagnosis letter helps for DLA at least. There is post diagnosis support in some areas such as SLT and OT.

Thank you.

Hearing a teacher say this is so helpful.

Changes quite a lot what school can offer. Or do offer.

Extra time in exams. A separate room. Support in lessons.

Yes school should offer these things anyway for children that need them but often don't.

Apparently because DC couldn't tell them she was having difficulties then there wasn't a problem... except she has a communication disability and can't tell them... Which is the problem.

New Sendco much much better.

That’s like saying someone can only use a food bank once they are suffering from malnutrition.

Your eyesight example is a great one for demonstrating the exact opposite of what you want to.

Kids are screened in Reception and it's not uncommon for eyesight problems to be picked up in this screening that the parents had no idea about. Parents, who spend a huge amount of time with that child.

Would I spot a kid who can't read the board from the back? It depends. If they shout 'miss, I can't see the board because I haven't got my glasses', yes. If they quietly sit at the back and compensate by not copying down what they're supposed to, copying the person sitting next to them, asking someone what the title is today and try to get around the fact that they can't see the board, then no. It would probably take quite a long time for me to figure out that the child who can't see the board but is trying to compensate for that, that the problem is that they can't see the board. This is particularly an issue as not copying from the board might be caused by many things.

Now get to autism, which is far more complex where the child might have needs but struggle to communicate them because there are features of autism that make that sort of communication difficult, or the child might not even recognise that there's a problem, and you start to understand why expecting teachers to 1) spot needs and then 2) know what the child needs and 3) implement reasonable adjustments x however many teachers that child has across the school across their time there is unreasonable and you realise just how helpful a diagnosis might be.

Push too hard and you get accused of fii like two of the mothers I have met on autism courses that are given to parents post diagnosis.

These are all available without school or dx.

@BlackeyedSusan - A favourite of mine is “but she didn’t ask for help”, along with “she looked fine”. That will be because she can’t ask for help, and because she masks so much that she always looks fine.

Huge feedback from a assessment that has a whole section on girls and masking, and still I hear “she had a smile on her face today” 🤦🏻‍♀️ (although she rarely manages to attend now , so doesn’t make so much difference anymore)

*feedback section

The NHS is broken, there are no resources, unfortunately they have to prioritise those who are in most need

More money would equal more staff. Supply and demand. Still reverts back to a horribly underfunded system.

My local CAMHS have already been rejecting referrals unless for severe cases, and even when referred there was at least 3 year wait. As long as I will be able to pay private, I will. And I used to work in the NHS.

Tell me which incantation I need please!

Specialist dentist for special needs children is referral pnly by the ped in my area,not talking about random nhs dentist. Occupational therapy used to be enough if ped referred now too they can turn down referral they have 3 point criteria in my area for them to accept a referral. Waiting times are uo to 2 years for an assessment( my child was re referred summer 2022 still waiting for an app). Medications- GPs do not prescribe melatonin without a shared care agreement from a ped. How are you going to get a prescription if child is not at least on the ASD pathway if not have a diagnosis?

Why bother making a comment when you wildly guess whats available or not