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?

Some of us who went undiagnosed ended up with mental health problems which I'm sure cost far more than diagnosing Autism
Having a diagnosis of autism does NOT protect you from “MH problems”. I’m not sure where this idea comes from or why it is perpetuated.
I would imagine what protects peoples MH is receiving appropriate compassionate support and that isn’t dependent on diagnosis it dependent on meeting individuals needs.

It absolutely does help to stop mental health issues from developing and mushrooming . Aside from knowing why you feel crap and find things hard you are kinder on yourself and know how to manage things better and treatment& education is adjusted. You also less likely to be overwhelmed and can be your true self. Masking causes a huge amazing of pressure on top of everything else.

How many times do I have to tell you that you can't evaluate your own needs without a confirmed diagnosis?

You can suspect that you may be autistic. You can think that you are probably autistic. But you can't be sure without a formal diagnosis, because it could be something else.

Go back fifteen years, I thought I was bipolar from the same symptom set. Go back twenty years, I thought that I was borderline personality disorder from the same symptom set (which is a very common misdiagnosis for autistic women, thanks to myths spread by Simon Baron-Cohen in the past). Self-diagnosis can be wrong and often is. Self-diagnosis can do great harm because treatments that would have helped are not given and the patient can embark on self-medication or self-treatment of a disorder that they do not have. Self-treatment of the wrong disorder can at best be useless and at worst harmful. My attempts to get DBT only wasted time and money but any attempt to self-medicate with lithium would likely have killed me. (Fortunately, I read the risks of that medication and decided that attempting self-medication was too risky

Diagnosis doesn't just confirm what you think you might have, it rules other things out. And sometimes a diagnostic assessment indicates that you don't have a condition, allowing you to consider differential diagnoses.

I don't just know that I'm autistic. I also now know that I'm not borderline despite a note of "borderline tendencies" on my GP records, not bipolar, not antisocial personality disorder, etc because I'm diagnosed autistic and that accounts for my entire symptom set.

So if we consider a population using the terminology before autism and Asperger’s were merged into ASD for clarity (if you have better words share them because it’s not easy to find them).
We have a diagnosed Autistic set (dAutie), an undiagnosed Autistic set (uAutie) and a diagnosed Aspergic set (dAspie) and undiagnosed Aspie (uAspie). ALL of these people might go on to suffer with limiting MH issues but it isn’t a given and we have no way of knowing how diagnosis impacts outcomes.

This.

The first thing my mum said to me post-diagnosis was "now we know that none of it [my behaviour, how I was treated, etc] is your fault". You don't get that closure from self-diagnosis "I think I probably have X", but from someone with post-nominal letters saying "without a doubt you have X".

No, we need to address the issue of why resources are limited in a wealthy country instead of not diagnosing people.

back in 2007 the only autistic referrals were for non verbal
as said recognition has caused a huge waiting list
teachers should be trained in support regardless of diagnosis.
funding in education should be increased is where the buck stops.

The u set don't know for sure why they struggle so much. The u set are denied the toolset that comes from the certainty of formal diagnosis.

The d set have the certainty of authoritative diagnosis. If you can't understand why certainty alone is a massively good thing for autistic people, then you do not understand autistic people in the slightest. The d set have the toolset, which I will describe parts of.

One piece of that toolset is being able to say to boss/colleague/customer "I am autistic" and have the boss/etc reframe the autistic person's behaviour rhat would otherwise be read as rude.

Another piece of that toolset is being able to say to Google/DuckDuckGo "autism background noise too loud" instead of just "background noise too loud" and get results about self-managing sensory overload instead of results about workplace noise limits and the Pipedown campaign.

There's more toolset parts, but these are the parts that make an immediate day one of diagnosis difference to someone's life.

I have literally gone from the u set to the d set and I am only now healing from how my teachers treated me as a child but apparently "we have no way of knowing how diagnosis impacts outcomes"? I've seen cattle paddocks with less bullshit.

The adult late-diagnosis cohort are living evidence that diagnosis does improve mental health, with effects starting on diagnosis day.

you can still search Music too loud and search for resolution

@VitoCorleoneOfMNMafia the fault is with the teachers

Adding "autism" to the search term filters out the results related to planning regulations and complaining about your neighbour's all-night parties to the council.

The problem isn't always music. It can be other people's conversations.

Because of how autistic people process sensory inputs, "noise too loud" can occur with "lights too bright" and "cosmetics section too stinky" but it's only the noise you consciously notice. But when you look for autism-specific advice, you find out that the reason why the noise in Tesco gets too loud when you shortcut through the makeup section is actually because of the smell in that area on top of the noise and light that pervades the whole shop. Other people with the same condition as you with more experience of managing it suggest that putting sunglasses on will help you with the smell, the noise, and the light and, combined with noise-cancelling headphones, will enable you to stay in the shop for long enough to finish your shopping.

Reading that back, I want to highlight "other people with the same condition as you with more experience of managing it". Autistic people form a mutually-supportive community and denial of diagnosis is denying us our rightful place in our own community.

While we treat the open fractures before the sprained ankles.

Your “toolset” of googling and certainty aren’t available to many autistic people, because they simply don’t function in that way.

With limitless resources it might help to screen and diagnose everyone though I’d suggest in that mythical world assessing need and supporting it would be more productive. We don’t live in that world though, and here we have XXXX assessment slots that are allocated based on the criteria set out so that those who’s lives are most at risk of blight are protected first.

but surely the issue is sensory
so you can search for sensory aids

you would still get a referral with breakdown of educational placement.

Sigh. I say again:

Because of how autistic people process sensory inputs, "noise too loud" can occur with "lights too bright" and "cosmetics section too stinky" but it's only the noise you consciously notice. But when you look for autism-specific advice, you find out that the reason why the noise in Tesco gets too loud when you shortcut through the makeup section is actually because of the smell in that area on top of the noise and light that pervades the whole shop. Other people with the same condition as you with more experience of managing it suggest that putting sunglasses on will help you with the smell, the noise, and the light and, combined with noise-cancelling headphones, will enable you to stay in the shop for long enough to finish your shopping.

Without the autism lens, it never occurs to you that the smell is even a contributing factor, nor that reducing light with sunglasses might improve your noise tolerance.

Continuing in education is not proof that the child is fine. Many parents on here speak of the angel at school and devil at home because the child masks like crazy at school and breaks down as soon as they walk through the front door.

I was still in education but was being bullied by children and teachers, battered, and sexually assaulted. I was not fine.

and you only recently got a referral @VitoCorleoneOfMNMafia after a tough time at school by the sound of things.

I think while it might not have occurred to you it would be an early consideration for most and certainly there are many non autistics who don’t hit diagnostic thresholds who suffer with sensory difficulties and overload.

1. Their parents might use those tools. And previous posters have said that schools often expect a diagnostic report to provision support.

1. That some people don't know how to use those tools isn't licence to deprive the rest of us of them by deciding that being battered and sexually assaulted isn't grounds enough for diagnostic referral because we are still attending school.
2. The sixth richest nation on earth can afford assessments for all children who show traits. Our Govt chooses not to prioritise this, instead choosing to waste money on overpriced prison hulks for asylum seekers. These are political choices, not funding shortages.

@VitoCorleoneOfMNMafia

"How many times do I have to tell you that you can't evaluate your own needs without a confirmed diagnosis?"

Err, some can.

I disagree. I can see @TomeTome 's point.

Many posters have said the equivalent of : I wasn't accepted, I didn't have peace, I wasn't believed , school or work didn't make 'reasonable adjustments' etc until I got a diagnosis. Can none of you see how wrong that is? They should have already!

I am in my forties and girls weren't even considered for autism back then. Now that girls are finally recognised as potential autists, I don't want that ladder pulled up for the girls at school now, who have all the shit I faced made a hundred times worse because the bullying can happen 24/7 in front of the whole world thanks to the internet.

Imagine an ideal world? Instead of parents constantly fighting to get their child's needs met, imagine it was given. The Senco immediately contacted the parents asked them what they wanted and implemented it, without an iep or an ehcp. Then Senco got EP's advice and implemented all those suggestions. You don't even need to go to paed consultant or camhs for a diagnosis, because all your child's needs are met already. You can get a diagnosis quickly and easily, if you do want one, and then instead of being left with nothing, unsupported, you then carry being helped.

None of that happens. But it should. Remember support is supposed to be based on need.