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?

Thank you. I think i need to start planning that now. He is 13 and everything takes so long!

@FloatingBean Oh you really are not listening to me - I can't do these things, I have tried but I run out of executive function/motivation to follow through because of my difficulties. I already told you it's taken 7 years to get to this point, and you still do not understand my issues or where I'm coming from. The DWP will not take into account any of the agencies that I have involvement with, without a diagnosis - I have it in writing, so sorry but the "should happen" and what actually is happening is miles apart. Just because you are writing here saying it happens isn't true. They insist on a diagnosis (functioning alcoholic, suspected ADHD / Autism just isn't good enough (Dr's letter) They want an actual diagnosis.

Please don't tell me I'm wrong, because this is my reality

Just because I don’t agree a diagnosis is necessary doesn’t mean I am not listening. I am more than aware how relentless and exhausting it is. I understand perfectly. Nowhere have I said you or anyone else has to do anything. I am pointing out that you keep saying a diagnosis is needed and it isn’t, you say the DWP won’t listen but ultimately it isn’t their decision.

From the Y9 AR PfA should be considered.

Dreadful, we need more support not less..
AS AN aside I wonder how anything can be need led without some idea of what a diagnoses would even be

So the sleep clinic is only available to CYP with autism. What is the process for CYP with sleep difficulties who are not autistic?

You can get both an ehcp and dla without diagnosis as we had both. You can also get accommodations in school and for exams without diagnosis as we had both. In all the above we were told they would not award based on diagnosis but on need.

They don't meet the service criteria and won't be seen. The service does include others like those with genetic conditions (diagnosed).

So the sleep clinic does not see any patient who presents with sleep difficulties unless they have a co morbid condition? That is pretty unusual

Agreed @BramleyAppleHotCrossBun

same @medianewbie @BramleyAppleHotCrossBun

"Those children not eligible to be identified will have to find support based on need."

What does that even mean? Where will those children get that support? Who provides it? How do they access it? Who identifies what their needs are without a diagnosis? Just to give you an example, my DS's difficulties were being treated by the school as behavioural - he was being punished and was on the route to being expelled. It wasn't until he had a diagnosis that he moved from a pathway of "behavioural" to "SEN", they also then knew what condition they were dealing with and therefore what support strategies might help. He was able to access specific support designed (and funded) to support children with specific conditions - for example, he was able to access 121 support from the school's ASC TA - he would not have qualified for this had he not had a diagnosis. Charity support, which is invaluable, is often diagnosis based - SEN parents know that part of the value of a diagnosis for a struggling child, is the support that it opens up.

How are schools (and other organisations) able to differentiate between behavioural issues and SEN, and what SEN? That needs a multi-disciplinary team of MH experts. Outside the remit and capability of the school certainly, and unfair to be placing that responsibility on over-stretched schools and their teachers and staff.

And yet those needs ARE identified by school NOT by diagnosis and schools legally have to meet needs and diagnosis involves identifying deficits not teaching educators how to educate.

Im sorry I think our experience of education and health are so diametrically opposite that we are unlikely to see eye to eye.

Are you not aware of the pressures schools are under or that diagnosis informs educators and helps children hugely particularly those whose needs are very much hidden or those who have a PDA profile.

Also there are interventions specifically aimed at children with an autism diagnosis. At my daughters school there was an autism lead who supported children with autism and their families. It cost money and her hours were precious. You needed a diagnosis to access it. They also ran a course each year for a few weeks specifically for parents of 6 children with an autism diagnosis at a time that was fantastic. https://www.autism.org.uk/what-we-do/professional-development/training-and-conferences/earlybird/teen-life

Also the sooner a younger person gets a diagnosis the better. Autism caused my daughter’s huge struggles. Her team wanted a diagnosis in order to help them help her and to help her access help. By the time she got it like a lot of teens she had a very negative view of autism that she is still wrestling with today and which has held her back. If school staff and other professionals knew what we know now about how autism presents in girls and had picked it up earlier and she had got her diagnosis earlier she wouldn’t have become so ill and cost the NHS the huge amount that she has. She would also have been far more accepting of her diagnosis in the earlier days and already processed it thus speeding up recovery and freeing up services.

For us as a country to reverse back hugely and ignore what we now know leaving autistic children at huge risk of catastrophic and dangerous mental health illness and other difficulties further down the line is abhorrent.

I can't read this whole thread. It's too triggering. I've seen this article and am glad people are starting to share it.

It breaks my heart. I work with these types of students and they are wholly and totally let down by the system. By the time I intervene its too late.

Equally, my son was self harming and struggling to access the community and we were rejected for all forms of assessment. Daily violence. Extreme distress. It was just awful. I took a credit card out to pay for assessment. I'm lucky that option was available to me. The assessor said she was astounded it hadn't been picked up sooner in him.

School wouldn't have identified needs in my daughter. She masks almost perfectly at school.

As I said upthread I think this is a way of separating the diagnosis again into those with what would have been called autism and those with what might have been called Asperger’s while making sure in addition those hitting crisis point are served. It’s clear to me that the individuals identified by the new gatekeeping criteria (because let’s face it, it’s an attempt to protect those resources for the most immediately vulnerable) DO need to be helped urgently.

What it will also do is mean those accessing support designed and focused on the early diagnosed will be the people it was designed for NOT those with slightly different needs who are also struggling but who’s prognosis, and experience while sharing the same diagnosis are VERY different. For those that don’t fit the criteria for early assessment they will need support and accommodations but they should be focused on THEIR presentation not piggybacked on services that were designed for very different difficulties. It should become clear that they need a different diagnostic process and the numbers involved. It should stop the “yes we can see he/she is struggling but we have dc with MUCH higher needs who are filling that service” and provide some clarity and less tension.

Well no, it’s not a way of separating the diagnosis, is it? That implies that those with less immediately acute needs will still get a diagnosis, and they won’t.

You’re not getting it.

They are the same people. Both my children would qualify under the new criteria, they wouldn’t have before. Early diagnosis would have stopped them reaching crisis, school breaking down etc. Diagnosis was always designed for them as was services as they are autistic. If you reach the threshold for autism you are autistic and equally deserving of a diagnosis.Nobody is talking about changing the threshold for diagnosis.

Their non diagnosis caused and exacerbated their crisis. Bumping young people off the list because they are not falling apart enough will do the same and cause a far bigger strain on services in the long and short run.

It’s ludicrous and just awful.

I wonder if bumping people off waiting lists or getting to the waiting list is a new tactic to hide the fail of hiding away and cancelling appointments for nearly 3 years.

If you reach the threshold for autism you are autistic and equally deserving of a diagnosis.Nobody is talking about changing the threshold for diagnosis.
no the threshold will be who can be assessed and THAT will change the demographic of who receives diagnosis.

My ds initially got dla without a diagnosis. Then when he was 10 the dwp decided he wasn't disabled anymore. So we had to give up his mobility car and try and live without the £100 a week we were getting for him. We went all the way to tribunal but we were told no dla as we had no proof of his disability. The senco and the paediatrician both sent in long letters explaining his needs but both were dismissed for being biased.

2 years later when he was 12 he tried to kill himself. Not just a vague attempt either, he was very lucky to survive. He was patched up physically and seen by camhs the next day. Camhs were useless, said he was obviously autistic but they couldn't officially diagnose him or refer him to anyone who could. When they tried to talk to him he just started crying so they said they were doing him more harm than good and discharged him. We have finally got him on the waiting list to be assessed 2 years later and now I'm scared we are going to be dismissed again.

Professional support for children with mental health issues and some other SEN is inadequate. I read a book once where a mum of a child who had attempted suicide said that if her son had the same chance of dying from cancer as he did from suicide then there would be loads of support available. But for mental health issues there isn't.

It's not just about the support either. On official websites and non official stuff written by parents there are tips and ideas of strategies to help your child with autism, dyslexia, adhd etc. But if your child has less obvious signs of neurodivergency then with no diagnosis you are left tearing your hair out wondering how to help your child who is getting 2 detentions a week for reasons unknown, loses his pe kit on a regular basis and can't seem to navigate the school homework app.

I am of course happy for children more severely disabled than my dc to take priority. But that doesn't mean my child shouldn't be seen at all. I have well controlled asthma and haven't had a problem in nearly 3 years. But I still need my preventer inhaler, my flu/covid jabs and my yearly asthma review.

I am of course happy for children more severely disabled than my dc to take priority. But that doesn't mean my child shouldn't be seen at all. this is what I think too.

“no the threshold will be who can be assessed and THAT will change the demographic of who receives diagnosis.”

No it won’t at all,it will simply be the same people who would get a diagnosis before and after the changes as the qualifying threshold isn’t changing.They will simply have been left to get in a worse state.

My children would qualify for a diagnosis before and after. Their need and diagnosis report will not differ. It’s the same autism with the same traits. Their dev history, sensory, communication difficulties ,repetitive traits etc aren’t changing.

If they had got their diagnosis earlier before they fell into crisis they in all likelihood would not have needed all the services that are now taking from others in need.