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?

Why can't those resources be shared? Just because we were diagnosed as adults and font need 24 hour care doesn't mean we don't have needs. I don't know of anyone who got a diagnosis for fun. I got one because I was struggling.

I am the parent of child A and I have no idea what I can or should be doing

she was first referred with the schools support when she was just 10. She’s going to be 13 or 14 by the time she actually gets assessed.

shes now at secondary school. She’s struggling. Other kids think she’s weird, difficult, strange. She’s sad, lonely and although capable isn’t doing well academically.

the initial phone consultation suggested various routes for support we can explore whilst waiting for a diagnosis. Every single one of them is oversubscribed/ full /unable to help. I was really hopeful the schools ELSA programme would be just what she needs. Nope. Full. Can’t include her.

she knows she’s not like the other kids. And she hates that she isn’t. But I can’t say to her “you feel this way because you’re autistic” because actually we don’t know that she is. Because she’s not got a diagnosis. And that’s another reason it’s important.

Have you applied for an EHCNA? If not you should and appeal if necessary. That way you can get support written in to it that must be provided.

Thanks @FloatingBean i’ll google that. I haven’t heard of EHCNA but will look into it

this is another frustration. I’m full of self blame becuse I simply don’t have the time and capacity to become fully conversant with this whole new world that i have no knowledge of. It’s (yet another) enormous burden on parents.

@Handsnotwands An EHCNA is the needs assessment that is first requested as part of the process of getting, or not, an EHCP. IPSEA and SOSSEN have lots of helpful advice on their websites, including model letters, and both have advice lines - although you have to persevere with these as they are in demand. The SEN and SN boards on here are helpful too.

You shouldn’t blame yourself, this isn’t your fault. The system shouldn’t be like it is, it really shouldn’t, but sadly it isn’t going to change any time soon and DC whose parents know the system and can advocate get better support.

We ( family and teachers) believe my son has autism. He has been diagnosed with adhd but despite the sencos best efforts we cannot get him referred. It means I will also have to put his assessment on my credit card like I did ( amd still paying for) his adhd assessment . It's shameful.

Who are 'they' that have acted sneakily?

This is a trusts response to the diabolical levels of staffing and explosion of referrals they can never match. This is a direct result of the chronic underfunding from the government. No one is being sneaky?

The clinicians are being open and honest about what their tiny resource can manage. This means people know the score and can start complaining / campaigning for better funded services to the government.

@AmericasfavoritefightingFrenchman

You seem to be providing lots of excuses about why it’s hard or impossible to provide support without a diagnosis and that’s just not ok.

It might not be ok, but that’s how it is.

My ‘angle’ on this is that the argument in the article is that it is ok to not diagnose kids because ‘schools should be supporting based on needs’.

That’s throwing an awful lot of responsibility onto schools who already can’t cope with the SEN burden on them.

Support should be based on needs. So many people on this thread are being shouted down when they say it isn’t.

”Should be” isn’t the same as “is” and all this is doing is making it more likely that kids will go unsupported. Schools cannot step up to try to find ways to classify a child’s various needs in a quick way that a teacher can understand that would replace a diagnosis.

And all the saying that they “should” be doing that in the world isn’t going to fix that.

This decision is a problem.

I agree the decision is a big problem and diagnosis is important.

I am well aware “should be” isn’t the same as “is”, but parents can, and should be supported to, force LAs and schools to comply with the law as provision is based on needs.

@TomeTome of course what i wrote is accurate. Don't be lazy and attempt to discredit: just sinple reading online and watching well researched recent documentaries will shout this very loudly. I really love how some NT trolls people like to tell autistic women that what we personally experience/our knowledge is incorrect and that what we want isn't important.

If this new criteria misses girls and women thrn this is discrimination.

As someone who can obviously type, write and assert your needs I do think you are less in need of resources than a person who needs 24/7 care and is not able to communicate their needs in any way. I’m not saying you don’t have needs, but I am saying yes I would be upset if you were first in line or ‘the same’ in getting resources as the person who needs 24/7 care.

What about an autistic person who can type and “assert needs” but who then dies by suicide? Would you think they had been more deserving of care then, retrospectively?

what about the “high functioning” young adult who is sectioned under the mental health act? Are they more deserving or less deserving, in your option, than a young adult who needs 24 hour care but who is not at high risk of suicide or self harm?

You seem quite confident that you are able to decide who is “less deserving” @ToastMarmalade

@noblegiraffe Has anyone started a petition on http://petition.parliament.uk/?

Clearly they are being shared between the most needy first.

I don’t know about a petition but there is a crowd fund for JR. I don’t know if I’m allowed to post a link or not but if you google assess for autism Bristol crowd justice it will bring it up

Are you calling me a troll @allthebestmumsusethefword ? Don’t do that.

Happy to read if you link to evidence that autistic women are as you claim. I was simply saying I HADN’T received that informed before. As for discrimination, ALL resources are divided based on a criteria.

They’ve decided who they think is more deserving, you just don’t agree. I think lots of people are uncomfortable with the idea that lines are drawn, and resources are finite.

I’d happily give more food to a starving child and have less myself. I think most people would. I’m not sure why recognising the extreme need of those on the list is so difficult. It’s obvious to me those should go first.

Autistic women are at a greater risk of suicide compared to NT women and also compared to autistic men. The risk is also greater in those without a LD. Here is one link from the Royal College of Psychiatrists. I’m sure there are plenty others around including more recent ones.

Yes but we are comparing need and rationing resources within the autistic community where even a rudimentary google will show you.

Those with autism and intellectual disability die 30 years before their non-autistic peers, with epilepsy the leading cause of death. Autistic adults with no intellectual disability die an average of 12 years earlier than the typical population, driven in large part by suicide².

How are you rationalising giving the resources to the group who are doing better? (Genuine question, because I really don’t understand how you’d do that). Nobody is suggesting autistic women without LD or epilepsy are “fine”, just that they aren’t as vulnerable as the individuals who meet the criteria.

Absolutely ridiculous. I know of many families fighting the severe and complex effects of undiagnosed generational neurodiverse trauma. Suicide, drug and alcohol addiction, eating disorders, incapable of working, profound and lifelong mental health disorders.

I will NOT play SEN Top Trumps, but let's imagine there is a non verbal boy with limited IQ with unlikely outcome of a career or marriage. Is an autism diagnosis more necessary in his case? Or in the girl who feels misunderstood and out of place. Her profound disconnection from a "normal life" she sees other people have, will eventually lead to bullemia and OCD. She will need ongoing medication and therapy to assist. Who would benefit from an autism diagnosis more?

The obvious answer is both need a diagnosis.

It’s not too trumps to allocate resources to the most needy and it’s not evil to have an opinion as to what “most needy” looks like.
Surely as adults we know resources are finite.

You asked for evidence to support that poster’s claim about autistic women and suicide so I provided a link as you said. I did not comment further about who should receive what support, neither did I suggest it is “top trumps”.

However, ‘doing better’ surely depends on what definition is used and clearly isn’t as simple as saying everyone with a co-morbid LD is ‘doing worse’ than those without a comorbid LD.

I also think it is difficult to compare statistics for those with autism with and without a LD especially when you consider those with a LD but without autism also have a lower life expectancy than the population as a whole.

@FloatingBean i was responding to @Blort s post about top trumps

I know, I was just pointing out I wasn’t.

I think doing better as a very basic measure for me is living longer.