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?

Abso fucking lutely

Stuck in that too disabled to organise a pip claim... Can't navigate the system to do the extra work to prove difficulties because the difficulties make it too hard.

If you can’t access assessment you won’t receive a diagnosis. Those diagnosed will then in effect only be autistics who got past the gatekeeping. This will in effect reverse the merging of diagnosis to a large extent making “autism” mean something different than it does now but not that different than it used to be.

Not really because those at the point of crisis will largely be in the old "aspergers" category as the early language delay criteria would have been met at a younger stage.

So diagnosis will consist of autistics with early language aquisitions issues (old autism) and autistics without early language aquisition issue (old aspergers) who have reached crisis point.

And crisis point will vary depending on the capactity of the family/school to support the child as much as the child themselves. So a very 'severe' child might not reach crisis because support is forthcoming and a 'mild' one might because they are so misunderstood and then just implode.

Yes that’s clearer than my description. Previously I do think only more severely impacted aspergics received diagnosis.

“If you can’t access assessment you won’t receive a diagnosis. Those diagnosed will then in effect only be autistics who got past the gatekeeping. This will in effect reverse the merging of diagnosis to a large extent making “autism” mean something different than it does now but not that different than it used to be.”

No it won’t because they will reach the gate keeping threshold just later having racked up a huge cost to the NHS. Girls will be the most likely to be excluded, until they reach crisis.

Aspergic girls never were recognised easily though were they?

And you seem eager to go back to those days.

We’re not Aspergic we’re autistic.

🤷🏻‍♀️I’m on the fence really. I welcomed the original merge but it hasn’t played out well. I love people with vastly different presentations so I want what’s best for everyone really.

@Blu3Salv1a people diagnosed as with Asperger’s often prefer to use that terminology. Some haven’t been rediagnosed but have chosen to rename themselves. My intent was clarity not to offend.

I cant see how this is anything than a step backwards.

I have an autistic child and pretty sure the second child is too but not sure they'd reach a threshold to be seen even before this as they're "fine in school".

It really isn’t only those who truly need to be seen now can be. though @Chilloutsnow , it’s the most severely impacted of a fairly serious life long disability. I think they should be prioritised but I can’t see why you’d want others to be ignored if we could see them too?

My kids school had an autism awareness week. Great. But who did they focus on all week? Albert fucking Einstein. Embarrassing. Couldn’t have actually focused on autistic individuals who are non verbal, have severe language and communication deficits, often with learning disabilities etc. People who are unlikely to enter the world of work etc. Nar, let’s just focus on all the “extra special ones”. It’s a bit like mental illness. Let’s all focus on depression and anxiety. That’s ok. Psychosis ? No, not okay. Unfortunately the pendulum has now swung too far and this is the result.

Those who will be severely impacted by their autism will be seen though within this criteria.

They won't be seen until severely impacted and if they'd been seen sooner then they might not have been severely impacted.

@noblegiraffe

Hmm, you’re either severely impacted by autism or you’re not. That’s the thing with clinically relevant ND disorders. Its pretty black and white. You don’t just “become non verbal” because you waited longer on a list. You don’t just “suddenly develop a learning disability which severely impacts your IQ” because you didn’t get to see someone who diagnosed you with autism.

Mental Health issues may get worse, but they are different from organic neurodevelopmental disorders that are present from day dot. Now that might not fit your agenda whereby a “diagnosis” is important in a school setting. Viewing this from a wider, clinical lens, over diagnosis is a huge problem and certainly, certainly not under diagnosis like you’ve just said.

Kids are dysregulated for many reasons other than “autism”.

Hmm, you’re either severely impacted by autism or you’re not

Strongly disagree with this.

The environment an autistic person is in affects the impact of their autism. There are many cases where a child has been ok in primary school setting and then fallen apart in secondary due to the different demands.

Viewing this from a wider, clinical lens, over diagnosis is a huge problem and certainly, certainly not under diagnosis like you’ve just said.

And yet there are children who fall apart and who are then diagnosed later on. Are you saying that they are not autistic?

Chilloutsnow

You’re talking absolute rubbish.Show some
evidence and links for your over diagnosis theory because it simply isn’t true or what I see any school. Numbers of children with a diagnosis of autism or adhd are low because waiting lists are so long and there is so much ignorance out there as regards neurodiversity which you are helpfully displaying. Children, particularly girls get missed.

You do realise that autistic children struggling with mental health difficulties are also struggling with learning difficulties, sensory, social and communication difficulties too. Dealing with all that and neurodiverse traits on top are why those with autism are more likely to fall
into crisis and struggle with severe mental ill health.

Oh and the depression and anxiety you just dismiss has caused my child to attempt to take her life and spend much of the past few years in hospital. They have also put both my children into crisis and eligible under these gatekeeping restrictions being discussed.

This. My son was diagnosed at 3. What impact did his ehcp have from 3 until he started school? Bugger all. He was already severely impacted so went to a SEN nursery. He didn't talk until 7 so the fact that he had a diagnosis at 3, Portage from 2, sen nursery at 4 snd sen schooling at 5 he was still non verbal. Ehcp doesn't lesson the impact your autism has on you if your at that end of the diagnosis.

I know OP willl hate this but what got my son talking at 7 years old was going to a non maintained SEN school where money wasnt a barrier to meeting his needs. He finally had speech therapy and OT on staff, in school and in class every day. My LA wants to get more sen kids off ehcps and into mainstream. Costcutting fobbbed off as inclusion. SEN in mainstream has been insidious for a decades in my LA. People with NT kids didnt care because it didnt involve them. Now its come home to roost and the ND kids are going to upset the mainstream classes. My mainstream dd's teacher told me my dd with asd and a ehcp needed a TA in class. But a week later in a meeting with the senco, the teacher backtracked and said she didnt need a TA. where do you think as a parent my loyalty lays? With the thread bear school or my child? I have very little energy and i certainly dont enjoy banging my head against a brick wall. Or fighting mainstreams corner. Do you spend effort fitting a square hole around your circled child, or do you put that effect into escaping mainstream? Its an incredibly entrenched problem that can never ever get better in England. Its always at the expense of the sen kids because bottom line they cost, schools hate cost. Who do you think pays for my childs private sen schooling? And who you think has no money to get therapists or TAs into schools? Its a broken system failing because its set itself to fail. Children do not matter. Money is king. Outcomes dont matter. Balanced books matter. Its a total joke.

I know OP will hate this but what got my son talking at 7 years old was going to a non maintained SEN school where money wasnt a barrier to meeting his needs.

Why on earth would I hate that?

Autism isn't that simple though. Most academics who work in this field agree, which is why they merged a few separate diagnostic categories to all sit under the Autism Spectrum umbrella.

A child who is assessed as non verbal at age 5, might be highly verbal by age 16 and fit the aspergers profile better. They may got on to live a fairly successful adult life.

A child who is highly verbal at 4 may struggle massively in other areas that mean that a mainstream education and an independent life as an adult would be almost impossible for them.

There is more to autism than being verbal /non verbal, learning disabled/ normal intelligence. In fact being non verbal and having a learning disability isn't even part of the diagnostic criteria for autism, and never has been. Of course you can have a co-morbid learning disability. In fact co-mordid conditions are common in individuals with autism, so you may also have dyslexia, dyspraxia, ADHD, epilepsy etc. Co-morbid conditions of course make the person's disability more complicated.

Even the earliest descriptions of autistic individuals from the first half of the 20th century (Kanners autism) often describe children who were verbal and had skills in certain areas that would mean they weren't learning disabled, but they were still highly impacted by their autism.

Being verbal or having skills in certain areas is not the same as not having a learning disability. This desire to be really sure we understand that autism does not equal learning disability is really tiresome. If you have a loved one who is very severely impacted by their autism, with a high or low IQ, as I suspect @Chilloutsnow does, this bickering over the support received/deserved by those less severely impacted is just extremely alienating.

“bickering over the support received/deserved by those less severely impacted”

Err no posters quite rightly being outraged over severely impacted children being left to reach crisis before they get the diagnosis they need. And discrimination to boot.

If everyone screams really loud about the need to have resources for the kids who can read and write and speak and generally articulate their inner thoughts, what exactly is left for the ones who will never be able to do that?