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?

If your house was on fire would you sooner the fire service put out the fire as soon as possible causing minimal damage. Or wait until your house has almost burnt to the ground?

If my house was on fire we’d all be helping the ones who can’t help themselves get to safety.

The SEN boards are mainly used by parents of children with autism because autism is one of the more common disabilities. I'm not sure of the statistics but I would imagine that the type of autism that used to be called Aspergers syndrome is more common than autism with learning disabilities.

I find that having 2.5 children with the type of autism formally known as Aspergers syndrome there are a lot of people with non autistic dc who do the head tilt and say things like "So they don't have proper autism then" or "but they don't look autistic" or "well, we're all a bit autistic aren't we?". Worst of all is when people say we are "doing it for the money" as if we somehow persuaded multiple professionals to diagnose our NT child with autism so we could claim dla and carers allowance. So this is why I sometimes feel I have to shout really loud and justify my dc's autism.

I have to say that nobody with a child who has autism and learning disabilities has ever said anything like that to me. Despite me having dc who can do a lot of things their dc can't, they have all been very welcoming to me at groups etc.

I'm happy for my dc to be triaged and put on a different waiting list and for more severely disabled children to go first. Same as when I'm in a and e because my youngest has split his head open yet again trying to do parkour in the living room. I'm happy to wait while they sort out the heart attacks, strokes and car crashes etc. But I would like my child to be seen and assessed eventually. I am terrified that the government will try and force me back to work and leave my teenager at home on his own. And if I have to do that I'm scared he will attempt to take his own life again. Last time was in the middle of lockdown so I was dealing with my then 6 year old having a meltdown because he didn't want to get dressed and go on the school zoom meeting. And I was worried about what the teacher would say if we were late so I didn't check more closely on my 12 year old who appeared to be quietly getting on with his home learning. So I need an official diagnosis and dla for him.

@jlpartnerrs

The prison population? Heavy trauma/neglectful backgrounds. A lot would tick the boxes for anti social PD, which again, you’re not born with. Triggered by horrific upbringings 9 times out of 10. There are secure units specifically for offenders with significant learning disabilities but they’re different settings to prisons.

And I’m sure parents of children with more “classic” autism would recognise that a child who is suicidal should be seen as a priority too as should one who is not coping at all at school, so I think that the criteria seems right.

What isn’t right (obviously) is that this crisis management/firefighting focus on the most vulnerable in the autistic community is the ONLY option.

So what can be done?

I’m struggling not to use the wrong terminology and upset people but if population A are autistic people who will fit the Bristol criteria and the rest of the autistic population who wouldn’t are population B, what would good practice be given our limited resources?

I would suggest that B’s could benefit from accommodations in school. Most of the ones that really help are free to be honest and just require a little Know-how and willingness. As they progress through education it appears diagnosis is valuable both to receive appropriate provision, be on the look out for additional difficulties and to foster understanding both of self and those around us. I can’t help thinking that the diagnostic process could be less time consuming and less onerous than for As? I don’t mean it should be less thorough but early assessment of children who can’t communicate requires an enormous amount of time with long sessions of “play” and more limited time having been spent in education. If Bs could be assessed later having been cared for to that point surely evidence would exist already and questionnaires could be more easily answered etc?

elliejjtiny

Well I’m not happy for children to be left to end up like my children with their lives, schooling and mental health completely destroyed and at huge risk of suicide. Being prioritised at this stage is meaningless and too late. The drain on the nhs it causes takes services away from all.

TomeTome
You continue to ignore. They are the same people.Children B turn into children A if they are not diagnosed early.

Trauma / neglectful backgrounds and neurodiversity go hand in hand though.

A ridiculously large 100% of children in care are neurodiverse in some way. This is for many reasons: their care needs are so great that their parent can't cope, and / or their parents are also neurodiverse and struggle to cope with the demands of life and bringing up children. Addiction problems and neurodiversity also strongly linked, as is poverty. And that's the tip of the iceberg, plenty don't end up in care, just have difficult upbringing. You can't say that those people in prison with traumatic upbringing are a completely separate population from the neurodiverse population, it will be like a Venn diagram with a lot of overlap!

You also have to remember that neurodiverse people are more vulnerable to trauma than NT people, autistic children can have trauma simply from attending a mainstream school, or something else seemingly trivia that another child might brush off.

Just adding a disclaimer here that i know all autsitic people dont have trauma/traumatic upbringings before someone gets the wrong end of the stick.

But the outcomes for all types are neurodiversity are shocking on a population level.

Refusing to acknowledge these people exist by not diagnosing or supporting them, isn't saving money. These people will pop up in services somewhere else, whether that's mental health services, pupil referrel units, criminal justice system, addiction services, social services, benefits system, homelessness etc etc.

Sorry that should say a ridiculously large % of children in care are neurodiverse in some way. Not 100%

Or neurodiverse parents have neurodiverse children 🙄

Ok @Chilloutsnow I think you're actually arguing something very different from me.

It isn’t refusing they exist. It’s refusing to accept a clinical diagnosis which might not actually be appropriate and very much invalidates those kids who were born with it. The latter needing to be seen before kids who present with attachment difficulties etc. You can’t just keep diagnosing kids with autism because CAMHS is so useless. It’s not just another gateway. We need better mental health services for children, we need to stop just over diagnosing with adhd etc

Excellent @Affery, well done for using a slur against people with learning disabilities. I feel so welcome.

I'm not the one coming out with the usual albeist tropes about how autism isn't real/ is over diagnosed/ is used as an excuse for shit parenting/ is used to get free money and services etc

Sure. Typical mumsnet bingo.

It has got out of hand and many people working within services are probably quite glad the referrals are going to be going to those most in need. Calling people ableist divs is just silly and lazy debating.

It's not silly or lazy it's grossly offensive. Especially in a room full of people where some have real life experience of learning disability and the discrimination it engenders.

You are being albiest though.

Most professionals and academics in this area don't agree that it has got out of hand.

I know that very well @Affery and I also agree that there have been awful comments from all sides of the debate.

Here is what I know-

-My DC and others like them need advocacy much more than me and others like me
-Everyone should have access to the process of diagnosis and screening if there are concerns about development, learning differences, social and communication disorders etc.
-Everyone should also have access to support based on their needs, which means schools being funded to provide this - because diagnosis and screening is imperfect and subject to continued developments in research and knowledge even when funding is not an issue
-If access to diagnosis has to be rationed it should be on the basis of most severe need
-It is disgraceful we have come to a point where access to diagnosis is being rationed
-It is lonely and tiresome and discouraging and unhelpful to hear debate focussed only on those DC who will be able to advocate for themselves and to hear those who purport to care about the autistic community making it clear that they have actually never even thought about the feelings of those with learning disabilities.

https://www.mumsnet.com/talk/am_i_being_unreasonable/4773622-special-needs-parents-am-i-unreasonable-to-think-this-way

This active thread probably goes a long way in explaining why they’ve had to do this in regards to criterias. It really has got out of hand.

@Affery

lol, plenty of professionals certainly do think it’s got out of hand but you keep telling yourself that.

The OP of that thread makes no sense though. You can't just refer your child for an autism or ADHD assessment on a whim or because of a feeling. A referral usually has to come from another health professional, or school/nursery who also has concerns about the child, and has filled in the referral with loads of examples and reasons why they support the referral.

I mean if Bristol is accepting referrals from any parent who wants one them I can see why they have a problem.

You absolutely can if you go private. I have seen plenty of private diagnoses based on a single appointment and a lot of 'parents report that...'.

I can't locate the paper right now but I recall looking at a study on teenagers with attachment needs and it found that amongst the cohort they were studying, 80% of the CYP who had ASC diagnoses, were in fact not autistic and instead had very significant attachment and trauma needs that had been misdiagnosed as Autism.

So amongst some cohorts there is significant over diagnosis but this doesn't necessarily translate to over diagnosis at a population level.

I have no experience of private diagnosis so can't comment on this.

I imagine private diagnoses will only increase in the South West if the NHS route is blocked to all but those in crisis, so if people are concerned about validity of private diagnosis this is only making the situation worse.