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?

There is no evidence that Autism and adhd are being being over diagnosed. I have seen no evidence of that at all, quite the reverse.We known more now how neurodiversity can present differently particularly in girls and more adults are coming forward which is a hugely positive thing. Professionals welcome a diagnosis because it informs treatment and safeguards individuals. It doesn’t let them off the hook, difficulties don’t disappear with a diagnosis.You have to reach a threshold of criteria to get a diagnosis. Waiting lists are over 2 years in many areas and it can be 3k for private which most people won’t have. There really aren’t many kids in schools with a diagnosis just long waiting lists which are letting vulnerable young people down.

People in population B may develop into people who fit the criteria, if they are not given support suitable to THEIR presentation. But do they need diagnosis as toddlers or can their needs be met until they are a bit older? @Blu3Salv1a do you really think the most impacted not to be prioritised?

This is not about prioritisation or delaying diagnosis though.

This is about a big fat no to diagnosis unless you can no longer go to school or you're permanently excluded, or your family has broken down and going into care is a real possibility, or your mental health is so bad that CAMHS will actually see you (!) I.e. you've attempted suicide.

Absolutely no child or family should be put that position. Unfortunately plenty of families are all the time, even WITH a diagnosis, because support services are so limited.

No one is arguing that there shouldn't be a triage system where some children will be seen first, but there should be funding available for everyone to be assessed. And supported (but that's a different thread).

IME children who are referred as toddlers are usually diagnosed quite quickly once they are seen as it is so balently obvious. More subtle presentations are usually picked up later, and might take longer to diagnose (but not always).

I think it’s about prioritising and warning that only those that have been prioritised can be seen now. I honestly think it’s the same all over the nhs now.

Camhs discharged my son the day after his suicide attempt. They assessed him and that was it.

In my experience children often wait years to even go on the waiting list to be assessed for autism. My son was showing signs aged 3, we were told he probably had sensory processing issues but didn't meet the criteria for assessment aged 8. School agreed to do their own assessment aged 11. Referral went through aged 14. He has now joined the 15 month waiting list. It really isn't a quick thing. My youngest was showing signs from birth but nobody would let him join the waiting list until he was 3. He was eventually diagnosed aged 6. The idea that there are kids being diagnosed with autism when they are neurotypical is ridiculous. I can well believe people are being diagnosed with autism when they actually have a different rarer condition like PDA though.

Waiting lists should be shorter for everyone. I have said before that I wouldn't mind my son being triaged and children with more severe symptoms going first but I don't mean that anyone should be waiting anywhere near as long as they are currently.

I think “prioritised for referral” is the wrong phrase. “Accepted for referral” is more accurate.

So there are children with autism with various needs who will NOT be accepted for referral in the SW.

It's not the same throughout the NHS though. This sort of rationing is most prevalent in mental health and disability services, particularly children's. So much for parity of esteem 😒

I was attempting to recognise that these ARE autistic people, just not the prioritised ones. 🤷🏻‍♀️

People have been refused S&L and Camhs here BECAUSE they have a dx of autism, so it’s not like setting criteria for access to services is a new thing.

Can I say quietly that it’s not just the articulate, academically able autistic child that suffers from crisis in later years at school. Children with comorbid language and communication deficits, learning difficulties etc also suffer the same challenges. They also struggle in school. They also have significant MH difficulties. The path to diagnosis is not always swift or easy.

“People have been refused S&L and Camhs here BECAUSE they have a dx of autism, so it’s not like setting criteria for access to services is a new thing.”

And that is being challenged and changed because it is wrong.

Can I say quietly that it’s not just the articulate, academically able autistic child that suffers from crisis in later years at school. Children with comorbid language and communication deficits, learning difficulties etc also suffer the same challenges. They also struggle in school. They also have significant MH difficulties.

yes @TomeTome and God help us when we have to navigate that

I can absolutely see why those deemed to have more severe needs (eg non-verbal) should be prioritised for levels of support but not for diagnosis. It's in nobody's best interests to be limiting the diagnosis of additional needs.

It's a funding issue. I disagree with anyone who says that the priorities have to be made because of scarce resources. We are a wealthy country and these resources shouldn't be scarce. They only are because the government has chosen not to prioritise healthcare.

Can I say quietly that it’s not just the articulate, academically able autistic child that suffers from crisis in later years at school. Children with comorbid language and communication deficits, learning difficulties etc also suffer the same challenges. They also struggle in school. They also have significant MH difficulties

Not sure why you have to say this quietly or even at all. No one is disputing that. We're just saying that it is shocking that they have to reach crisis point before they can be considered for diagnosis and then appropriate support.

Because will be the reality for many of these children, even those with language and communication deficits and learning difficulties. Unless they have "very low communication levels" - and what does this even mean? There's a whole world between completely non-verbal and articulate, and that includes children with language delays / disorders and learning difficulties, that won't fit the criteria for diagnosis, and yet the standard universal offer is completely inaccessible to them.

There's a huge gap between prioritising and only allowing those in crisis.

My 6YO is stuck on the 18 month NHS waiting list. His journey so far

• Identified as GDD just before 3 in 2019. Was due to receive SALT and OT. His first OT session was the week lockdown happened March 2020..

• EHCP issued January 2021

• September 2021 His SALT starts. He has a severe speech sound disorder. He couldn't manage video sessions so he didn't get any at all for 2 years.

• He started school September 2021, severe speech sound disorder. Clear social communication issues. Doubly incontinent. Significant listening and attention issues. Hadn't seen a paed since Sept 2019.

• We receive a letter October 2021 telling us he has been removed from paeds due to starting school and if there are still concerns then to re-refer.

• school need to collect various bits of new evidence.

• Submit his new referral January 2022. This was rejected April 2022 as school sent his EHCP and not his Ed psych report by itself. They state that despite significant needs, an EHCP and being doubly incontinent there is not enough evidence he needs to be seen for a developmental assessment.

• I complain to PALS and my MP. This is eventually overturned August 2022. We are told with this letter it is an 18 month wait for just an initial appointment and a warning if there isnt further evidence he isnt likely to receive another appointment/investigation.

The kicking kids off the service at school age transition is fairly standard practice here. In fact the year before starting school they also won't accept referrals and tell you to wait until they start school. If you have an August born baby you have an incredible narrow window to get them referred and seen before being blocked by this silly school age thing.

As it is I have paid £2550 for him to be seen privately. This entails

Initial 90 minute appointment with a consultant Paediatrician.

90 minute assessment with a speech and language therapist. This was today and he wasn't coping so she cut the session in half and arranged to us for the other half next week.

90 minute clinical psychologist assessment where he will do an ADOS and full cognitive assessment.

60 minute feedback session with Paediatrician.

All of this is happening over 6 weeks after just a 3 month wait for an initial appointment.

It is essentially now a two tier system.

@Busybody2022 that's terrible, I thought our area was bad. Here for a long time the nhs would only accept referrals for children under the age of 7.

@Affery Not sure why you have to say this quietly or even at all. No one is disputing that. We're just saying that it is shocking that they have to reach crisis point before they can be considered for diagnosis and then appropriate support.
I suppose because it’s very obvious reading this thread that there’s VERY little understanding of what happens to autistics with different levels of need and it’s a bit upsetting to read. I think if you know it already (as much of the “helpful information about autism” provided by multiple posters is known to loads of us) then possibly just nod and move on?

@Busybody2022 that sounds awful.

I don't get that impression from this thread. I do get the impression that some posters are very insulting and bitter towards autistic posters.

What is happening to autistics with different level of needs that people on this thread are not understanding? I think most people here are fully aware of what is happening, which is why they are aghast at the move to ration diagnosis!!

Also - you are upset about people "not understanding what happens to autistics with different levels of needs". BUT also ok with "autistics with different levels of needs" not having those needs assessed and diagnosed until crisis point. AT THE SAME TIME. Which is some kind of mental gymnastics I can't understand.

And your reasoning is because everything else in the country is going to shit so why not this as well. Or something. We have to try and stop everything going to shit, not just sit back and accept the shit!

@AnorLondo I accept that, but we obviously all come with different experience and so a responding based on our own experience.

@Affery I’m not sure what you mean by “I’m ok with it”? Are you suggesting I want there to be a healthcare crisis and enjoy limited resources?! Don’t be ridiculous.

Already posted on here. I have four kids with ASD and it's been suggested by more than one Dr I need to pursue dx. However I don't ever feel comfortable talking on here about ASD. I'm very comfortable talking about EHCPs and sen education.

We already have a two teir system. I absolutely hate this with every fibre of my being but it's a harsh truth. I have one child on the very cut off who got a dx. I have a non verbal child diagnosed at 3. I have two kids in independent SEN schools as part of their ehcp. They all need the ehcps and could not access school without them. The cut off level child started school refusing in reception. My kids was all diagnosed on the nhs. But only the non verbal one got his ehcp without a tribunal. So I am not agreeing with my next statement as it makes me sick and feel very angry indeed. Unless you can go to appeal and tribunal some if which held at the Royal courts of Justice, the system will fail your child in a significant majority of cases. So two tiers. The parents able to navigate tribunal and those who can not. The system is set up to fail theses kids. The more you fail the more you save. Expulsion > pru> nothing ( 3 hours a week of ethos if your lucky). It matters not where on the spectrum you are if you can not access education due to your sen. Accessing education is the crux so if your borderline but out of school due to anxiety and overwhelmed does it matter your flavour of presentation? To me no. To other yes it seems. I'm sure people will pile on and now tell me that's not true because you shouldn't HAVE to ho to tribunal or you shouldn't HAVE to have a diagnosis but in my county there was 2000+ appeals to SEN tribunal last year. 90% of them won by parents. They are decided by a judge. Who has found that whatever set up in school wasn't meeting needs. So to me this says something. In my county you only get the most basic level of support if you can be a proactive advocate. Plenty of kids I know have been out of education for 2+ years and that's just siblings of my ms kids. Not via my sen circles. Once your out of education and can't access mainstream there's no SEN in year admissions in any of the state schools.

I live in Bristol and have a good friend who is a SENCO. We've had a good chat about this.

I know a lot has been mentioned in relation to autism, but the referral criteria also apply to adhd. My son was diagnosed when he was 9, and takes medication. Before diagnosis he wasn't at crisis point, but I think he would be now without medication and/or diagnosis. Without medication he was well behaved generally but very distracted all the time, very anxious, angry and would just explode when he got home from school after keeping it all in all day. He was bright but couldn't get anything down on paper.

Now, at 13 he's doing so well. Still really struggling with anxiety but he is much happier on medication and doing so well at school. The thought that we'd have to let him reach absolute crisis point before he could be referred breaks my heart. The long term damage to his education and self esteem would be horrific. Whatever it has cost the nhs to diagnose him and provide medication will more than be offset in the future by the fact he is now likely to get a pretty decent job and pay high taxes rather than end up in constant trouble.

I agree, sadly too many are forced to appeal (with and without a diagnosis) and those DC whose parents know the system and can advocate for them get better support. It shouldn’t be like that but it isn’t going to change any time soon. Parents should be supported to appeal and enforce their DC’s rights, not accept unlawful practices.

Plenty of kids I know have been out of education for 2+ years

If these DC are CSA their parents can enforce their right to a suitable, full time education (which 3hrs a week is not) under s.19 of the Education Act 1996. They can force the LA to provide provision via judicial review. Sometimes the threat to the Director of Children’s Services works, if it doesn’t a pre-action letter mostly does. Very few actually get to a hearing. This process has nothing to do with EHCPs or not, diagnosis or not, or anything else.

I have other friends with child with adhd who wouldn't be referred under the new criteria. Their hyperactivity is more external than my DS's (he's more inattentive and an over thinker/fidgety) so without their medication they are disruptive to other students in class and would probably need a lot more support in class, possibly 1:1. With their medication they can (mostly) participate in class.

So not diagnosing these children will have a negative impact on those around them as well.

Exactly.

But what if your a parent who doesn't like confrontation or doesn't feel confident to do any of this? I have told countless parents their legal rights. Some exercise them and some just keep waiting for the LA to sort it out. Some quote the law and it makes no difference.