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?

As I said WE received these accommodations in school before diagnosis, so yes you can receive them without dx because we did.
While you might not know what support is needed teachers and Drs obviously will suggest what they feel might help and I’m sure most people ask/read around and try what they can. Many of the services will suggest seeing each other if they think it’s appropriate. ANYONE suggesting that you need to wait for diagnosis is wrong. I’m not sure I said anyone could march in and demand anything but many of these services can be self referred to.

An EHCP doesn’t mean you’d automatically get a 121 and without one any kid would be highly unlikely to get a 121. Most schools struggle to afford TAs for group interventions let alone 121 without additional funding.
No of course it doesn’t, because an EHCP is designed to specify what is needed to support an individual and not all individuals would benefit from a 1:1.

What she needed was to know what was wrong with her and to know how her brain worked
alongside the medication she is still waiting to try at 18 after leaving school which is appalling Only her autism and adhd diagnosis could give her that. She needed specialist advice from the OT and paediatrician re her dyspraxia who gave her her diagnosis not non specialist teaching staff trying to teach 30 kids whose expertise is in the national curriculum and not dyspraxia. Autism awareness is shocking across the nhs and in schools. Both were hidden for years and not picked up properly. Because she smiled and kept quiet, was a girl and didn’t have melt downs in school or line things up and wasn’t originally in crisis she was ignored. There was plenty there. She should have been picked up earlier. Getting her diagnosis when she ended up in crisis has cost the nhs eye watering amounts of money. I’m glad such a ridiculous policy has been ditched.

The specialist advice from OT and paed can be part of an EHCNA and ongoing SEP part of the EHCP with or without a diagnosis. With an EHCNA and subsequently an EHCP advice and provision does not have to be from “non specialist teaching staff trying to teach 30 kids whose expertise is in the national curriculum and not dyspraxia.”

No one advocates for your child apart from you. Most/many MN'ers have to fight, find schools unsupportive, Senco's not helpful. Even if you do eventually get an EP to see your child some suggest the bare minimum they can get away with cost wise.

The psychologist was talking crap hth.

This is so true. Many schools and LAs aren’t supportive, repeat unlawful myths etc. DC whose parents know the law and advocate for their DC get better support. This applies whether there is a diagnosis or not. It shouldn’t be that way, but isn’t going to change any time soon. It is why I am passionate about parents being supported to challenge schools and LAs rather than accept unlawful behaviour and inadequate provision.

the paediatrican cannot tell the school/senco how to teach, the senco fights against this

The paed’s (also insert EP, SALT, OT, psychiatrist, physio, clinical psychologist…) advice sought during the EHCNA can inform the EHCP. The SEP detailed, specified and quantified in F must be provided. It isn’t optional.

I think it’s important to be clear that you CAN see these professionals and you CAN get support. I’m not saying it isn’t often difficult, but the idea that a diagnosis is the first step, or opens doors to automatic provision, isn’t correct and I would hate for the mother/carer of an undiagnosed child, or maybe one who doesn’t quite fit the criteria, to read this and think they can’t ask for referrals or support that might really help their child.

Referrals for what?

@Blu3Salv1a Im not sure what your issue is? If you genuinely believe the solve-all is a dx of autism for every child and that no one gets any help or support without I just don’t know what I can say to disabuse you of that.

All of this.

I am glad to read the update that the decision was reversed.

Literally no one has been saying that.

As you say, support should be available based on needs alone. As you say, a diagnosis should not be needed.

As I and BungleAndGeorge and others on this thread have pointed out based on our own experiences, in practice support is often gatekept and a diagnosis is needed to unlock that gate.

And as I and Blu3Salv1a and others have said, knowing that what's "wrong" with you is actually a difference in how your brain works, and you're not "broken", just neurologically different, has therapeutic value in itself.

And as I and others have said, knowing the name and mechanism of how you differ from others can help you look at everything in your life anew and see things that you didn't see before and make changes to help that weren't on your pre-diagnosis statement of needs.

As I and BungleAndGeorge and others on this thread have pointed out based on our own experiences, in practice support is often gatekept and a diagnosis is needed to unlock that gate. and yet many have stated they did receive support before dx based on their experience. Support in school is based on need, not dx. Honestly if you’d ANY experience of pursuing that support you would know that.

And as I and Blu3Salv1a and others have said, knowing that what's "wrong" with you is actually a difference in how your brain works, and you're not "broken", just neurologically different, has therapeutic value in itself. this may be true for some autistics but certainly not all and probably not most.

And as I and others have said, knowing the name and mechanism of how you differ from others can help you look at everything in your life anew and see things that you didn't see before and make changes to help that weren't on your pre-diagnosis statement of needs. I agree that it might make research and treatment more focused but can’t see that as a reason for deprioritising those that fit the Bristol Criteria. I do believe in a triage system and I think that Bristol were wrong to back down from their decision and that a great injustice has been done to the most vulnerable of the autistic community.

I can't remember what I originally wrote and MNHQ mod-nuked it so I can't reread it.

FloatingBean said:
Rather than accepting and excusing unlawful behaviour people should be supported to challenge it.

I'm not sure, in the context of everything else she's said, how that can be interpreted as anything other than "instead of getting a diagnosis to force your employer's hand, take your employer to tribunal instead". I don't have money to pay lawyers for that, and I would have a high risk of losing if I didn't have a diagnostic report to present as evidence of a) being autistic and b) having related needs at the tribunal hearing.

And what does "supported" even mean? A thread full of flowers emojis on Mumsnet isn't going to help.

Support in school is based on need, not dx. Honestly if you’d ANY experience of pursuing that support you would know that.

1. The child grows into an adult who still needs support and, as BungleAndGeorge and I have testified, outside of school the rules about getting support are very different.
2. My primary school got some people to come in and assess some of the pupils as possibly having additional needs. I had no idea why I and a bunch of others were pulled out of class one day, but we went to the staff room and had noises played at us through headphones and solved puzzles, put blocks in holes and stuff. Then nothing. My mum told me years later that some of us, including me, had been assessed as having additional needs but there was no funding for it. So "based on needs" when I faced that was rather a lie. I find myself wondering if an angry parent with a diagnostic report in hand might have had better results.

deprioritising

That's not what they were doing though, was it? They were outright denying access to the diagnostic waiting list, not just bumping kids in crisis ahead of those not in crisis.

Don’t know why I am bothering to reply, but I won’t have you misrepresent what I have posted.Again, absolutely nowhere did I say anyone had to do anything. And, absolutely nowhere have I said people shouldn’t seek a diagnosis. Quite the opposite in fact, I have posted repeatedly that I am pro-diagnosis.

You accused me of posting that I wouldn’t support someone, in particular a family member, who had been raped. Abhorrent! You have no idea of my or my family’s history.

For anyone who clearly lacks the understanding of what supported means the definition of support is to give assistance. There are many charities that support parents to enforce their DC’s rights, including funding independent assessments, completing forms/paperwork and representing them. Parents don’t need to pay lawyers to enforce their DC’s rights. Anyone who thinks they do or that support isn’t based on needs clearly lacks understanding of the legislation and SEN system.

There are also posters of MN that will do far more than post flowery emojis. You clearly aren’t aware of how supportive fellow MNSN posters are. Personally, I have completed DLA, PIP, SEND35/35a/7/4a forms, worked on WDs, drafted emails… for other MN’ers.

all comes down to school funding

TomeTomeAnd as I and Blu3Salv1a and others have said, knowing that what's "wrong" with you is actually a difference in how your brain works, and you're not "broken", just neurologically different, has therapeutic value in itself. this may be true for some autistics but certainly not all and probably not most.

Where on earth are you getting that? That isn’t what we’ve been told by different sets of professionals for both my kids. Quite the reverse. Also having lived 50 odd years myself without diagnosis and 1 with I’ve experienced the therapeutic value and difference myself. So many other people on forums and help groups I’m in seem to experience the same.

Also just to point out like many many families we’ve lived with and without diagnosis. The difference is huge as regards getting support and reasonable adjustments. Think I’ll be basing my opinions on that lived experience thanks.

Please let's not attack eachother! This thread hasn't been great, for reading what someone has actually written. No one wants anyone left unsupported. But we know children are. No one said don't try and get a diagnosis.

Let's me nice to eachother!

Lots of autistic people don’t understand what diagnosis is or don’t feel the need for a descriptor to excuse their difference because they simply don’t care in that way. They aren’t of course the ones sitting in chat rooms and presumably your children aren’t impacted in that way. The “feelings” side of diagnosis is on the whole the realm of articulate would have been described as HFA or Aspergic individuals but again not all of them feel that way.

I agree support in the form of flower emojis wouldn’t help but I can assure you the support I’ve received on MNSN over the years has improved our lives. What benefits you can apply for, what therapies might help, on dark days a voice you don’t have to be brave for, on red letter days someone who understands the magnitude of your child’s achievement…so much and on the whole still a respect for different ways and paths that isn’t seen on the main boards.
I’m interested in your opinion on the Bristol Criteria and even more interested in what you think the alternative should be, but I’m not offended you have a different opinion. I think you’re wrong obviously and I’m unimpressed by some of the unpleasantness on this thread but it doesn’t really win hearts and minds does it? So really of little consequence.

Use AXIA ( can do online if not bear Chester) Alder Hey use the provider with the identical assement process so it can't be refused by an LA.

Again, absolutely nowhere did I say anyone had to do anything.

On paper, no one has to do anything. I could choose between tribunal, diagnosis, or doing nothing.

Doing nothing meant unmet workplace needs and my job at risk. On paper, I could do nothing. In practice, I had to do something if I wanted me and, more importantly, Dcat to be able to eat and have a roof over our heads. The path of least resistance through that dilemma was the diagnostic route.

You accused me of posting that I wouldn’t support someone, in particular a family member, who had been raped.

I was seeing a parallel between "you must fight your discriminatory employer for diagnosis-free adjustments because not doing so is enabling and excusing their shit behaviour" and "you must report your rape because not doing so is enabling and excusing the rapist", which some people do still believe in current year, with the only difference being how serious the crime is. It was an overly-emotive choice of crime to use as an analogy to try to get across my annoyance at being accused of enabling and excusing my employer, for which I apologise.

You shouldn't need to have a diagnosis to receive the support but certainly in our area services are rationed so much that the only way to be high enough up the list to get support is a diagnosis. It is wrong wrong wrong but it is a fact. It's an absolute disgrace that there are insufficient funds to support needs people have to simply be able to live their lives as others do. We need a complete overhaul of the system but those in need are so busy just trying to manage day to day they don't necessarily have the energy to fight the wider cause.