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?

Well luckily literally no one has suggested that. As you say it would be absurd.

That's pretty much what you've been suggesting should happen, and that if it isn't happening then that's because of teachers being shit.

I work with people who fit the new criteria and it will massively impact girls and women, disproportionately.

That's not Paediatrics - that's SCAAS.

SCAAS is a brand new service that was launched last August. It only accepts children up to the age of 11 - children who are 11+ have to go via the regular paediatrics route which requires all the documentation I outlined.

Also, it's not quite as simple as that link suggests "Before a new referral can be made to the service all the professionals working with your child will hold a meeting to explore your child’s needs, to make sure your child has in place the support they need. If your child is not already on the Gloucester Graduated Pathway it is likely this will be considered as a next step before referral for Social Communication assessment."

The Gloucester Graduated Pathway includes TAF meetings, and talks about requiring input from SALT, ATS, Ed Psych, CAMHS and so on. So it seems that although in theory you could be referred to SCAAS without the full suite of documents from professionals, if you DON'T have them you'll still be expected to follow the Graduated Pathway route which requires all of those referrals to be made first, prior to the autism assessment.

For complete transparency, my children went through the traditional paediatrics route, and I left my role as governor prior to August 2022 so have no personal experience of SCAAS. But I'm in touch with lots of SEN parents going through diagnosis now, and it's no less onerous than it was.

Things always look so simple on paper, don't they?!

No it’s really really not.

It may be a different service, and I didn’t know it was new, but it is still an autism assessment in Gloucestershire that does not require the list of things you stated. At the end of last year I have supported a parent of a child who had been referred to that service and they did not have the list of things you stated so I’m not just basing my post by what is written on paper. I searched for the page because I knew an assessment in Gloucestershire didn’t require what you posted.

According to / this it is a CAMHS team who assesses 11-18 and the same criteria apply. SALT, EP or ATS not essential.

This is exactly the criteria my Trust has for speech and language therapy for learning disabled adults. It is an attempt to prioritize resources. There is no hope (under this government) of there ever being more resources so what else could we do?
People were waiting 3 years plus before. Now most know from the start they will not be getting anything. Ever. So they have the option to go private, go to the papers, whatever. But at least they are not being deceived.
Two professionals need to say there is an imminent threat of breakdown either in the home or in a placement. The only other criteria accepted is the Police/courts being involved.
It's not that anyone thinks that it's a good idea for all the others to get no treatment. But we have one member of staff who works one day a week covering half a large county. This is what the commissioners have chosen to purchase. The result is there is pretty much no service.

Sorry just seen this.

I think you're being genuine, but without wanting to be rude, I do think you're not seeing the whole picture here.

Even excellent SEN provisions aren't mind readers. Autistic children need very different things to neurotypical children - and without a diagnosis you are expecting the teachers to unofficially diagnose.

I've explained why it's important several times now. Needs aren't always obvious. Particularly with girls. So many of our girls are being desperately let down, they're being missed and it's disadvantaging them in school, and moving forward into their career. Boys get disproportionately diagnosed compared to girls. Girls mask. Teachers - with the best will in the world - simply don't have the time to spend with each individual child to tease out what might be autism. A diagnosis is absolutely vital so that the right measures can be put in place right away. Lots of our autistic children get missed - until they reach crisis point. Lots of autistic teens self-harm - and if proper support was put in place earlier, that might not be the case.

The gold standard for a very long time has been early identification and early diagnosis. It's pretty much universally accepted that it makes a big difference. I am really really struggling to understand why a few people on this thread are saying that it doesn't matter.

And yes, as an autistic woman myself, I'm really struggling with the fact that I'm telling you that it does make a difference - but people are telling me that it doesn't. Yet I know it does, it's my life and my neurodiversity. And that of other autistic adults, and beyond, our autistic children. The vast majority of autistic adults will tell you what an enormous difference knowing that you're autistic makes. Going beyond school into university, and into employment. Employers absolutely won't make any allowances just because you tell them it helps - unless you're lucky and they're lovely. Explain that you're autistic, and then actually they're obliged to make reasonable adjustments by law. reasonable being the operative phrase here, obviously.

You say it should "cross people's minds" that a child might be autistic - but then what? Treat them as autistic even though the measures you'd implement for an autistic child might be counterproductive if they're NT?

And here we go again with the whole "you don't need a label" - it does make a difference. What we haven't even spoken about is the difference it makes to the child. When they're capable of understanding what autism is, knowing that there's a reason why they feel different, knowing why maybe they struggle with things that others find easy, knowing why they find it difficult to make friends....it makes a difference knowing there's a reason.

If an autistic child could clearly communicate their needs and point out specifically to the things that they need to be changed, then yes, diagnosis would be superfluous. But autistic children can't communicate their needs clearly, that's an inherent part of their diagnosis. And they could be masking so heavily, it's almost impossible to identify what the actual underlying cause is. There's no flashing lights highlighting what to do - which is why the diagnosis makes a difference.

I can't actually believe I'm having to justify why a diagnosis is important. I really can't. It's vital on so many levels, and not just so that teachers have accurate insight into what a child's needs are.

The only thing I will say however, is that I don't know how we fit this very real and vital need in with a health service which is utterly broken and already not coping. I don't know how it fits in.

Shocking. Under those criteria nobody with Aspergers would ever be diagnosed. Which means they’ll be unable to access support and financial benefits for the rest of their lives. They may be entitled to PIP but without a formal diagnosis they stand pretty much no chance.

You have a parent you supported who you say didn't need any of those things.

I'm telling you there are multiple parents I'm supporting at the moment who have been told they do need those things.

And SCAAS accept a referral without those things true, but then before the assessment is carried out, the child has to go through the Graduated Pathway first. My previous post is a direct quote. The Graduated Pathway requires TAF, SALT, ATS, EP.

I can also tell you categorically that CAMHS absolutely are not diagnosing children. I could give you the names of a long list of children who are currently being seen by CAMHS but still waiting to be seen by Paediatrics for diagnosis.

I also know a child who's got suicidal ideation, a child with a potential autism diagnosis, who was turned away by CAMHS a couple of weeks ago for not having sufficiently severe need. He's awaiting paediatric appointment - and is 11+.

I don't think there's any point in going back and forth - I know exactly what my personal experiences were, and what many, many of our parents are still going through right now. Including for example, diagnosis being made by the OWL Centre via the NHS. Not CAMHS, and not SCAAS.

You're insistent you're right - and I'm sure you have your experiences to back that up. But what you're trying to tell me is the case, I'm telling you is absolutely not the experience I have had and am continuing to have with tens and tens of parents right here in Gloucestershire. I can only say what I categorically know to be happening here and that doesn't tally with what you say happened on the one case you dealt with. So let's agree to disagree.

So my anecdotal evidence backed up with written links isn’t good enough. But your anecdotal evidence contrary to the services’ policies is. Got it. You’re right there’s no point going back and forth, it’s pointless.

Where services aren’t sticking to their policies perhaps parents can and should go via the ICB, which is what I have done for parents in other areas in the past. Just like when LAs aren’t sticking to their statutory duties parents just enforce their rights, not just accept it.

but then before the assessment is carried out, the child has to go through the Graduated Pathway first.

This isn’t what your original post stated though you said they were needed for referral. Also the graduated approach doesn’t have to always include SALT, EP, ATS. As anyone can see via a link in the first link I have posted.

They are not prioritising though, they are completely rejecting that child unless and until they meet that criteria. To use your analogy, this is the equivalent of only educating the children in the priority groups - the rest don't get any education at all. It's disgusting quite frankly (not that I blame CAMHS per se, it's the massive underfunding over many, many years that's the issue but this isn't the answer).

@WishingMyLifeAway To use your analogy, this is the equivalent of only educating the children in the priority groups - the rest don't get any education at all. No, it’s like those children have to walk further every day to a school they don’t think fits as well. Those children not eligible to be identified will have to find support based on need.

tldr sorry just wanted to echo Squirrelsarestinky : 'And yes, as an autistic woman myself, I'm really struggling with the fact that I'm telling you that it does make a difference - but people are telling me that it doesn't. Yet I know it does, it's my life and my neurodiversity. And that of other autistic adults, and beyond, our autistic children. The vast majority of autistic adults will tell you what an enormous difference knowing that you're autistic makes. Going beyond school into university, and into employment. Employers absolutely won't make any allowances just because you tell them it helps - unless you're lucky and they're lovely. Explain that you're autistic, and then actually they're obliged to make reasonable adjustments by law. reasonable being the operative phrase here, obviously.'

It's REALLY important that autistic girls and women are supported and diagnosed as soon as possible. We have the highest rates of self harm as teenagers and we as autistic women have a higher risk of suicide compared to our NT peers.

Any raising of diagnostic thresholds for cost-cutting, significantly raises the risk of harm to us.

We need more awareness and support, not less.

You’re incredibly rude.

I’ve already accepted you have your experience. I said as much in my post. And that’s fine but it doesn’t invalidate what I’m saying. Do not try to talk over me or gaslight me into believing that the multiple experiences I have had don’t exist. I’m not doing that to you and I’d appreciate the same courtesy in return.

I have given explicit and detailed explanations - quoting directly from the Graduated Pathway in Gloucestershire and SCAAS own procedures about the fact that the referral process doesn’t work as you claim.

You didn’t even know that SCAAS was new. Or that it wasn’t the same as a Paediatric referral. Your “knowledge” seems to be restricted to quoting links you’ve googled.

You’re trying to catch me out and prove I’m wrong - but failing. My first post very clearly referred to Paediatrics - not SCAAS. As I pointed out in my previous reply to you. The Graduated Pathway is for referrals to SCAAS that don’t have supporting professionals. The referral to Paediatrics is exactly as I initially described. Two different pathways. It’s really not difficult to follow.

As I said previously - there’s no point continuing our discussion. You’ve ably demonstrated both your ignorance and lack of knowledge.

And as for speaking over an autistic woman who’s telling you that diagnosis matters? Pretty much what I’d expect from you, given the ignorance of your posts.

I won’t be engaging with you again, regardless of how much you attempt to provoke.

Thank you @allthebestmumsusethefword - absolutely. It’s girls and women who will be disproportionately affected here. As always.

It's REALLY important that autistic girls and women are supported and diagnosed as soon as possible. We have the highest rates of self harm as teenagers and we as autistic women have a higher risk of suicide compared to our NT peers. I have no idea if these statements are accurate but as far as I am aware it is the individuals described in the n criteria for assessment who have significantly reduced life expectancy. If you a portioning out resources in a civilised society we prioritise in order of vulnerability and while autistic women may struggle compared to their nt peers many are far more privileged than large proportions of the autistic community.

I am a mother of 3, two with ASD and my youngest was evaluated last week and has dyslexia. I’m in America and spent covid in Denmark.

In terms of evaluation, it’s a 6-9 month wait here unless your doctor pushes really hard and escalates. My son needed a diagnosis to open up a treatment plan and we were seen in 2 weeks. It is unusual though.

What I don’t understand is why there isn’t more diagnosis going on in schools. Put the NHS into the classroom to observe these children and pull out to assess. This way they can assess all the children the teachers flag plus they can assess additional children if they observe a child with what they think is a developmental issue. Use experienced educational psychologists rather than a developmental pediatrician. An LEA would only need 2-3 educational psychologists on staff with 10 experienced nurses. Leave the tough cases for the NHS staff at the hospital.

I have managed the care of my children and they are doing ok because I’ve spent a lot of money on it. 3 sets of school fees, speech and occupational therapy and now reading therapy. I have mathnasium, sports coaching and private swim classes. It’s a huge investment and this is what every child needs. This is why we pay our taxes.

The lack of investment in education is killing our society. It’s awful to watch the UK follow the US blindly into the abyss.

@Aintnosupermum here in the uk children would be seen by a EP in school, teachers and parents would fill out extensive questionnaires, you might also be seen by speech and language, OT, and possibly a asd specific Communications and Interaction team member, plus hearing, sight, etc test and it is all brought together by a qualified developmental paediatric consultant. I’m not sure why you think anything is being left out.

@TomeTome in a civilized society access to healthcare isn’t such a problem that you can’t get a diagnosis. Diagnosis matters. If you don’t know what the problem is you can’t start to work to ‘fix’ it. Truthfully there is no fix, you are just training your child on how to navigate and cope.

My eldest is a girl who has been diagnosed with autism. What she has been through so far is horrific. Staff at school were restraining her. She would be locked in a storeroom when she was having a meltdown. She wet herself a few times. I had no idea beyond ‘she had a tough day’. My daughter ended up with PTSD, school refusal and a PDA diagnosis. She was prescribed multiple medications to sort out her meltdowns. We had OT and speech 3 hours a week at considerable cost and then CBT for half an hour in the AM and 4 hours over the weekend. It took me a year and a move to Denmark to get her off the medications. She is now back in the US at a Catholic private school and just got straight A’s despite missing massive parts of her education. I assume they have been generous with their marking but her achievement is miraculous all the same.

Dr Greene and his approach saved her life. I highly recommend all who are in contact with someone who has autism read the explosive child. It has worked with my children.

@TomeTome that is way more than what is necessary to determine autism. I’ve been through the U.S. system of evaluation and it’s questionnaires filled out by parents and the teacher, an observation in a clinical setting and they doing a medical exam (height, weight, blood pressure and temperature etc) which I thought was a joke. We were done in 2 hours. Went back the following week for a 1 hour parent only meeting.

It was a morning radio piece from a psychologist with perhaps dubious clinical qualification but ultimately the idea was that to some extent 'we are all part of the spectrum'

Clearly very dubious qualifications indeed - if any at all - because that is an unbelievably ridiculous comment. 😡 Why are they giving such ignorant people airtime?

@FlyingWormsAndSubterraneanBirds They need to fill up the airwaves and the people who are qualified are thankfully busy at work.

in a massively under resourced and overstretched system where choices do have to be made

This is completely the wrong way round. It should be that the system is adequately funded and resourced, not that people with genuine need are removed from the system due to a lack of funding.

My DH and I are both teachers. I'm a primary teacher, he is secondary. I'm experienced enough to recognise students who have needs that may be related to ASD and spend enough time with them that I can identify them (depending on their level of masking). I can then put in some strategies to support them. At secondary school there is no way this can happen due to the limited time teachers spend with each student. Sometimes they have more than one teacher for each subject. They just don't know each student well enough to start making appropriate adjustments, especially at the beginning of the year. The students with potential difficulties.

Nowhere did I say that parents shouldn’t worry about getting a diagnosis. The reality is that support is based on needs and individual teachers should be doing that in the classroom anyway. I bet you do, almost without thinking. If a kid is struggling to read the board but won’t have his eye test til next weekend, where do you sit him in the meantime? If he doesn’t tell you he’s seeing the optician but his answers suggest he misread the question multiple times, do you act on your observation?