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 found the new criteria:

1. Children and young people whose education placement is breaking down despite appropriate support (including those who are NEET - not in education, employment, or training - and those at risk of permanent exclusion, transfer, or long period of school refusal). This may include children and young people who need an Autism diagnosis to access the required specialist provision.
2. Children and young people whose family unit is at risk of breakdown despite support from appropriate agencies (parents/carer and social care are unable to meet the children and young person's needs, leading to risk of child protection proceedings and/or child needing alternative placement). This can also include children whose adoption is at risk of breaking down.
3. Children and young people in care or on a child protection plan for whom an assessment is needed (e.g., to inform placement planning).
4. Children and young people who are open to Children and Adolescent Mental Health Services (CAMHS) with severe and enduring mental health difficulties (i.e., high risk to self or others) where an autism diagnostic assessment is required to support their formulation and care. Or children who are not open to CAMHS but are presenting with a serious risk to self or others (e.g., risk of exploitation, significant self-harm, dangerous levels of aggression towards others).
5. Children and young people who are involved with youth offending services and/or are engaged in repeated offending behaviours.
6. Children with very low levels of communication where the difficulties are likely to be associated with autism (usually Early Years).

There are so many children with autism who wouldn't meet any of these criteria. What are they supposed to do? Wait until they present a serious risk of self-harm?

This is so sad to read. The key is early diagnosis and intervention not waiting until the point of breakdown. At that point trauma gets added to the mix and makes everything even harder to support.
I know support is meant to be needs led, not diagnosis led, but the diagnosis process gives a thorough assessment of what those needs are and how to support them.

It’s fucking awful. They’re saying they won’t do a thing until there is wreckage everywhere and the child and family’s life is all but destroyed. It’s hideous.

You could look at it from another angle and say they are prioritising those children who are in extreme need. To me it’s like identifying children who should be prioritised for school entry.

Awful, so so sad that things have to get to breakdown levels before correct diagnosis can be made. Huge step back for girls with ASD too who are less likely to meet criteria due to masking, but worry not families get to the point where you're near a mental health breakdown of your own and you can no longer prioritise your children to such an extent they're deemed at risk of harm and you can get on the list.

There's a difference between saying that those who are in extreme need can be bumped up the list, and saying that only those in extreme need can get on the list.

Those in extreme need tend to be diagnosed quicker as well as the indicators can be far more obvious and there are often other professionals and services involved.

Children need diagnosing earlier, not ignoring. By these criteria ds would never have been diagnosed & what (little) help we got we wouldn't have got. It's disgusting, those kids who refuse school because it is so overwhelming their parents are going to get blamed. What's next, nor diagnosing type 1 diabetes, asthma or even appendicitis?

That’s interesting, do you “feel” this is the case or how did you come to that conclusion?

So basically they can give themselves a big pat on the back for reducing waiting lists by just rewriting the criteria.

Shall we only start treating other medical problems the same? We won't treat your broken leg if you have another functioning leg? Cancer only gets treatment once it's spread?

In reality the support is not there until you receive an "official" diagnosis and families should not have to wait for crisis point to receive help.

We are walking headlong into a crisis with this. We need to be proactive in making early diagnosis, not on the back foot and having to react.
But this is where systematic underfunding of services has got us. It's appalling for those children and their families.

Why are they doing this? Is it simply due to lack of funding?

And once you reach crisis and get on the list, it's a 2 year wait!

The issue isn't really the criteria but that the funding only allows them to offer the most desperate assessments and the wait for them is still far too long.

And assessment or not, diagnosis or not, finding support is a huge battle.

The whole system is broken.

😯 I had no idea this had been snuck in. I've just submitted forms for ds2 and he doesn't meet any of those criteria. But he is so like his older brother who does have ASD. Looks like he won't get a diagnosis then

The sad thing is that in parts of the SW, if not all, assessment services aren’t even meeting these very limiting new criteria… children already in crisis, school placements broken down, families not coping, all the while sitting on 3 year long waiting lists.

Not sure these criteria will change anything in the short to medium term. It’s that bad already.

They've essentially closed the lists to new referrals unless in crisis. What is not clear is whether they would open them again if things change.

I work in a different NHS service and we have sometimes considered closing the lists because it is an absolutely overwhelming work environment when the lists are out of control. We have occasionally suggested closing lists in the hope that our managers would actually do something about recruitment (at its worst last year we were operating on a third of funded staffing). Maybe this team did the same and the management called their bluff?

One of the criteria on the dsm iv is whether 'symptoms cause clinically significant impairment in social, occupational or other important areas of functioning'. I work in an asd diagnostic team and have yet to meet a yp who meets the other criteria for a diagnosis who don't meet what I've quoted above. Early diagnosis and intervention is key, but unfortunately services are so stretched that I'm not surprised they've slipped in additional criteria for assessment.

This is a similar picture to my part of the NHS. Only the very at risk will be seen now. We've had to decide how severe someone has to be before we accept a referral before we would have accepted everyone with issues.

They aren't saying you can't get assessed for ASD, just that you can't have it on the NHS - another part privatisation by the back door at the hands of the government.

It's nothing to do with ASD and everything to do with funding and the very small percentage of people in any area who will be eligible for NHS treatment moving forward.

No, it's lack of staff. People don't want to do the necessary training and work in these roles in the numbers required to be able to adequately deal with the demand. MH services have had money thrown at them but its had to be rejected because they can't expand services whilst there's a staffing crisis.

This development is a step back but its also necessary as the system is beyond breaking point, they actually sum it up in the article:

We changed our referral criteria so our resources can be directed towards the children that have the highest clinical need or are the most vulnerable. It is important that we do not continue to accept more children and young people than we can see and assess, and our new approach has also brought us more in line with services across the rest of the country.

Someone above asked if they'd do the same with physical health conditions- yes they have been doing this for a number of years! Services slowly removed from being under the NHS, thresholds and criteria rising all the time. Personally I don't think it will be long before emergencies and life saving treatments will be the only things under the NHS, all elective stuff will be private.

I am in the South West. This policy maybe 'official' now, but the same principles have lingered in the referral process for many years. I know because my youngest has ASD. Despite a medical background allowing me to knock on the right doors for diagnosis, it became a matter of paying to obtain private assessment, or give up. This is terribly sad for children, and their families. I was faced with all sorts of patronising denials from so-called professionals and teachers who were convinced that I was projecting autism onto my child as a result of knowing about it professionally. Of course, all the signs were there as she struggled with social skills, and was stressed in school. She learned nothing in primary school, and was thriving once removed from school. A different child has appeared thanks to home education. She was identified as a child with potential emotional and behavioural difficulties by teachers with no formal SEN background, and the Head of her former school suggested these were all my fault being a 'working mother'. I was sure of the correct diagnosis, but I feel very sorry for families navigating the system (esp. post-COVID).

Is part of the issue is that you have a massive number of parents wishing to seek a diagnosis. In my local community many parents with children with low IQ, below average academic performance coupled with a boisterous non attentive approach to schooling are now going down the route to referral and due to the length of waiting lists often make a self diagnosis in absence of a formal diagnosis? It seems parents wish to have an underlying reason for their child being less than academic and some do fairly easily latch on to neurological conditions that weren't as being profile two decades ago. While I have sympathy for parents would a greater awareness of the true thresholds for conditions of ADHD/ASD help?

I was minded of this listening to a radio psychologist basically saying we all have an element of ASD/ADHD and if we take this attitude is it any surprise we have large lists for diagnosis?

This is happening everywhere. Loads of work programmes are being stopped and we have been rationalising care like this for ages. It's only the very high acuity cases they qualify for secondary MH support these days too. People have to be at worse than rock bottom to get help. Welcome to a decade of the Tories (and no I'm not anti Tory, but I've spent most of the last decade in NHS management and you think thinks are shit and then they just continue to get even worse).

This isn't the NHS making decisions like this for fun. There is only so much funding. A staffing crisis. We can't attract or retain talent and we therefore can't keep up with patients needs.

But surely diagnosing someone with autism should be a medical decision, not an educational one?

Thanks @Upsywavy

This is dreadful and will affect the life chances of every child blocked from dx and help. Higher income families like mine will pay their way to a dx and children from deprived backgrounds will suffer.