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?

I’m so sad to read this. We could afford to go private but nhs help shouldn’t be a post code lottery

mids2019 This is a myth. Ime parents often need to be persuaded as many are scared of their child having an autism diagnosis. Teens often don’t want a diagnosis.

“low IQ, below average academic performance coupled with a boisterous non attentive approach to schooling “ would not get you a referral from school in our area.

It is probably because the system has been broken for some time, finally we are getting better at identifying autism in girls so more are needing to be diagnosed and the pandemic was difficult for those with neurodiversity so more are being treated for mental health struggles and coming to light.

It’s appalling as girls often hide their autism for years and eventually develop mental health struggles because of non diagnosis.

Many private Dx aren’t recognised. I’d much rather have an nhs diagnosis.

My dd is part way through assessment and diagnosis. When I asked at the initial consultation whether we should pursue a private diagnosis as we’re looking at another 2 years before we are actually seen, the consultant told me that that wasn’t an option. That it needed to be via the nhs. Is that not the case?

By whom? I've had no problem getting my private diagnoses accepted by the NHS over the last 8 years (3 separate diagnoses for 3 conditions)

It's disgusting.

I have an ASD child who was previously refused an appointment for DX vecause he didn't meet assessment criteria - I was referred for parenting classes for parents whose child has autism though, and CAMHS also refused to see him because they said it sounded like ASD!

Eventually diagnosed at 10, EdPsych report at 11 says complex needs, including school refusal and implies needs a SEN school placement for secondary.

I'm still not sure he'd quite meet this criteria though! Madness.

He probably thought you were asking about getting a private assessment paid for by the NHS under "right to choose" (which is your right but only if you haven't had an NHS referral yet) rather than self-funding. I've been told similar nonsense by people who are talking at cross purposes but never had an issue with my private (self-funded) diagnoses once I got them.

This. For EHCP purposes many councils will not accept a private diagnosis and insist on an NHS one, which are near on impossible to get with a 3 year waiting list.

National Autistic Society-“Some local authorities may not accept the results of private diagnoses. They might insist upon an NHS diagnosis before they will provide services to you and your child. For this reason, we suggest that you stay on the waiting list for an NHS assessment even if you also decide to go privately.”

@Blu3Salv1a

I agree but anecdotally there is a misunderstanding of these conditions that means for some parents use the label of these conditions to explain their children's lack of academic performance or poor disciplinary record. It must be easier as a parent from an esteem point of view to have a clinical reason for their child's behaviour rather than acceptance of low academic potential or willfully misbehaving. Whilst I am not for one minute trying to trivialize neurological conditions the public perception of the symptoms do lead a number of parents in my view to push children down a diagnostic route fairly quickly. I was just putting the point is there any way to make awareness of the condition to become more fully understood to prevent services becoming overwhelmed at least initally?

I can't even tell you the rage I feel.

Morally, ethically abhorrent.

Somewhere a bunch of ministers and civil servants worked on these proposals and, if any of them are reading this, you should feel thoroughly ashamed...

@mids2019 I'm interested in hearing about this radio psychologist. Do you have more info?

mids2019

But they wouldn’t get on the referral list. The referral form is quite stringent with evidence of a lot more needed than what you have listed. So such parents would not be impacting waiting lists.

For EHCP purposes many councils will not accept a private diagnosis

Any LA with a blanket policy of not accepting independent assessments is acting unlawfully, and if parents appeal SENDIST most certainly do.

Part of this from the article is a huge leap in referrals following lockdown.

There's also a huge leap in mental health issues following lockdown so I'm not surprised. Children with ASD are more likely to suffer from mental health issues, so if the mental health issues were triggered by lockdown or the difficult return to school then this might make a referral for ASD diagnosis more likely. Parents are less likely to agree to referrals when there aren't any major issues.

My DD was diagnosed with ASD when she was 6 - we've had very little support since the diagnosis, despite some significant health issues she's developed due to poor interoception awareness (she has regular hospital visits but nothing to support her with the ASD lense applied). In my experience the support available post diagnosis is shockingly poor. This anecdote isn't to discount the fact that the change in criteria is a grave disservice to potentially many children, but post diagnosis hasn't been an easy path with lots of options, either. Sadly.

@flashbac

It was a morning radio piece from a psychologist with perhaps dubious clinical qualification but ultimately the idea was that to some extent 'we are all part of the spectrum' and we should embrace diversity. Although well meaning does this attitude blur the public perception of neurological conditions and perhaps dilute focus and sympathy? If we're all autistic who is autistic etc.

I read one article from a parent who had a non verbal autistic child who was arguing after watching an interview with Christine McGuiness was sympathetic to some extent about her condition but wanted to point out there is a range of symptoms with the reality being some families are absolutely devastated by this disorder.

No they didn't...

@Blu3Salv1a

That is true but won't parents whose children don't reach the criteria argue that the criteria is artificially limiting (possibly for resource rationing?). The parent will still argue that their child has an undiagnosed SEND when working with schools about improving behaviour.

Most certainly dubious. Sounds like they don’t actually know what the autism spectrum is.

Many young people and families who have verbal children with autism are devastated too. My daughter has been in and out of hospital the past few years and tried to take her life twice.

You seem to be in a mission to trivialise autism.

We are most certainly not all a little bit autistic. 🙄

mids2019

Not ime. There are all sorts of reasons for the things you mention and most parents want to work with schools.

@FloatingBean

I agree but there are various life style gurus that are willing to give opinion on national radio. The general point was that there is no such thing as neurological therefore we are all neurodiverse to an extent. If you allow the non medically qualified to come up with snap psychological judgment you will allow a distorted perception of neurological conditions to permeate society leading to. lack of focus on real need.

@Blu3Salv1a

I don't think it's trivializing. I think there is a danger of over diagnosis of we take any decision making away from the trained medical community. Resources are hideously scarce which may lead to self diagnosis in some cases based on criteria of dubious worth.

Given that Autism is a lifelong developmental condition for which there is no 'treatment' is there any purpose to diagnosing everyone who may be autistic? As far as I am aware EHCPs and PIP etc are needs based rather than diagnosis dependent so why are we seeking to diagnose so many people when in reality a diagnosis doesn't actually change anything