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 would not describe sexual assault avoidance as a "very small advantage". Not when I was already three times a victim of it.

I don’t think it’s the diagnosis but the recognition of deficit that provides the prompt to behave more cautiously, but I’m not really sure where this line of conversation is going?

I think the reality is it’s very much easier to obtain help for an unseen disability with a diagnosis.
girls diagnosed with autism are on average diagnosed years later and with worse assessment scores. This is because society doesn’t ‘see’ the disability due to a different presentation, it’s not because they are less affected or ‘higher functioning’.

Without an assessment and diagnosis you may not pick up all the ‘deficits’. Most of us just think our experience is pretty normal because we haven’t experienced being someone else! Same for any condition really, you need to know what condition you have in order to be empowered to tackle the problems. I wouldn’t have necessarily immediately linked autistic women as being high risk for sexual abuse but of course the rationale makes sense

I think if you’re at the level where you can pass for neurotypical then you ARE less effected. I’m not sure why that causes so much offence or leads to so much back and forth.

I disagree @BungleandGeorge but I think there are many who believe the same as you.

I only "passed" for NT as a child because at that time autism was believed to be a male-only disability. The other kids at school did not hesitate to call me "weird" and the teachers used terms like "manipulative", "overreacting", "tantruming", and "crybaby" to describe me when I had meltdowns. Have a think about how teachers calling me things like that would affect an autistic girl.

In current year with our improved understanding of autism, I certainly don't pass as neurotypical. Plenty of people have said things like "I suspected so" and "that explains a few things" when I've disclosed my diagnosis.

When a whole raft of children are denied a diagnostic assessment because they aren't in immediate crisis, they are being put in the position I was in when I was a child growing up, of being treated as NT when they are not. And they are being put in that position as a deliberate cost-cutting policy decision, not because their condition isn't yet fully-understood.

The child who "passes" for NT will still struggle. We don't pretend that a child with a sprained ankle is uninjured just because another has a broken leg.

The child who "passes" for NT will still struggle. We don't pretend that a child with a sprained ankle is uninjured just because another has a broken leg.
But nobody is suggesting you wouldn’t be in pain, or struggle with a sprained ankle, just that you don’t have the same level of injury as someone with an open fracture.

It’s like sexism in the uk compared to sexism in Afghanistan, yes women are payed less, hurt more, and discriminated against here but we aren’t on the whole refused education or incarcerated.

So, my inability to recognise red flags in men's behaviour and assess situations for subtexts and even really understand that men will treat women differently from other men was not one of the things that I identified as being in my symptom cluster until after my diagnosis. To use your terms: I did not recognise my deficit in that area without my diagnosis.

It was when I was reading up on how autism affects women generally that I read about this. To quote Carly Jones MBE, "when does coffee mean coffee?" My first rape, we went to his flat because I was curious about his guitar and valve amplifier. And he did show them to me and play to demonstrate how the sound differs from a transistor amp before going on to put his unprotected penis in me without asking first. (I had condoms, if he'd just asked first, I might have considered sex with protection.) The clue, that I missed at the time, was that he seemed surprised and sort of resentful that I actually wanted him to play when we got there. Twenty years on, with "How To Spot A Dangerous Man" and "The Gift Of Fear" on my shelves, I recognise the clue. And with an autism diagnosis, I understand how I didn't and couldn't have recognised that to a straight man talking to a woman, "coffee" doesn't mean coffee and "show you my valve amp" is code for "me getting my dick wet".

The diagnosis prompts extra research into the condition that you are diagnosed with, which empowers you to realise things about yourself that you hadn't thought of before. It lets you spot deficits that you had not previously spotted. And then you can take action to help yourself.

If we refused all medical treatment to the sprain victim, that would be wrong.

If we refused to do anything about UK sexism because Afghan women have it worse, that would be wrong.

It's not the idea that some autistic people struggle more than others that is the problem. It is the idea that only the ones in crisis deserve diagnosis and support that is the problem.

I think if resources are limited broken bones before sprains.

Most of us just think our experience is pretty normal because we haven’t experienced being someone else!

My mum, as a child, thought it was normal to have to hold a book 10cm from one eye to read it. Her teachers told her parents to get her eyes checked and it was only when she was diagnosed as short-sighted that she realised that other kids could see clearly more than a metre in front of them.

I thought it was normal to find the music in River Island to be really loud and the lights really bright and assumed that other people somehow enjoyed that or tolerated it to get clothing. I realise now that I experience sensory overload in there and am searching for a better vendor of better jeans.

The assessment tool on its own had me going "you mean that's not how everyone experiences that?". Post-diagnosis research even more so.

It's inhumane to deprive autistic people of these tools that they can then use to help themselves.

Fair, but you wouldn't say "we can't assess you, now go run a marathon". You'd recommend RICE and come back in a fortnight if it doesn't improve, when hopefully all the people with broken legs are treated. Telling the autistic person that you can't assess them unless they are in crisis is like telling the sprain patient to go run a marathon and only come back when they can no longer even stand. Life doesn't stop for the autistic person, there is no neurological equivalent of RICE.

There are ways to find peace and healing without diagnosis.

TomeTome · Today 02:38
There are ways to find peace and healing without diagnosis.

Bullshit!

Camhs pushed my DD’s diagnosis through because they needed it to inform and support her better. The masking caused her huge struggles, that is documented by professionals. The amount she must have caused the NHS now is eye watering. If she’d know about her autism far far earlier she wouldn’t have become so ill.

"NHS managers say the new restrictions are needed because of a 350% rise in local children waiting for an autism assessment since the height of the pandemic, with waiting times exceeding two years."

350% increase? Why is that increase so very large? If more people needed an assessment because we are all now more aware of autism, yes. But that still doesn't account for such a huge rise.

There is still a backlog from the pandemic, we are thankfully more informed particularly re autism in women and girls and late diagnosed parents are now being picked up when their children are.

It more than accounts for the rise.

First they took away the diagnosis of Aspergers Syndrome and lumped everybody into ASD, then they raised the bar massively as to who qualified for a diagnosis of ASD.

I saw it coming a mile off but generally people thought it was wonderful because everybody was included under the same lovely ASD umbrella and using terms like high functioning is 'unhelpful'.

I'm just thankful that ds got his diagnosis of Aspergers before all this nonsense started and the NHS became completely unfit for purpose. I feel terrible for all the kids who are going to be totally and utterly failed by this, the ones who carry on quietly, spending all their time alone, struggling hugely but not making a fuss because they don't know what's wrong with them, just trying to survive.

It will cause more cost to the NHS and is such a false economy aside from being just blatantly wrong.

I don’t see how it will cost more to the nhs to not diagnose people who historically weren’t diagnosed?

I’m not sure why those undiagnosed are likely to have worse outcomes because they aren’t diagnosed because of limited resources rather than limited recognition?

I don’t believe that all autistic people can only live their best life through diagnosis. I think diagnosis is one way of dealing with life for those that meet the criteria, not the only way and not always the best way.

Because the lack of diagnosis and masking is what lead my children to become ill,illnesses that are proving to be harder to treat because of their autism. You may not understand it but professionals do as they have said this.

Those children wouldn’t have been diagnosed previously.
Not ALL undiagnosed people become unwell.
“Professionals” talk a lot of shit but in this instance it’s the “professionals” who are saying they will only assess those that fit the criteria.

Some of us who went undiagnosed ended up with mental health problems which I'm sure cost far more than diagnosing Autism

No it’s NHS managers not professionals pushing for this and we all know how informed they are and how they put the needs of patients first- not. I think I’d rather go with the views of psychiatrists, clinical psycologists, senior mental health practitioners, educational psychologists and the like thanks.

It’s well documented that autism brings increased risk and more likelihood of mental health struggles. Masking often makes this worse as it causes overwhelm and schools, parents and young people trying to squash Square pegs into round holes.

Oh do please enlighten us, "expert". I had no peace until I was diagnosed in my forties. Pray do tell what magic I somehow failed to spot?