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 is it either/or?

Ob don’t be so ridiculous. Leaving kids until they get to crisis doesn’t help anybody and just puts even more pressure and drain on resources. So children shouldn’t get the autism diagnosis they need because there are others who are nonverbal. 🤔

I'm not talking about being nonverbal. Being nonverbal is a different issue from being able to advocate for yourself.

It's not either/or. I'm just adding to the explanation of why parents of DC who are wholly unable to advocate for themselves feel alienated by lots of responses on this thread.

But it's also extremely alienating to have a child who is severely impacted by their autism, but it being told that because they're not non-verbal or have a LD it means they should be denied diagnosis, and therefore access to autism specific services. At least until your family or child is at complete crisis point.

The tyranny of the or.

Being disparagingly referred to as "the extra special ones" is also quite alienating.

@Affery but who are you feeling alienated by? I never said you shouldn’t get diagnosis- I agree it’s important. But the SEN discussion is absolutely dominated by autism, and the autism discussion is absolutely dominated by those whose DC are able to express their needs, and by those who are desperate to make sure we don’t mistake their DC for someone with -horror of horrors! - a learning disability. It’s tiresome and alienating and very lonely for those of us dealing with a severe presentation. Our “tribe” has rejected our kids before we’ve even made an introduction. And so we get tired of sticking up for you and arguing for you to get your diagnosis etc etc when we never get any support in return.

I imagine it might be. You could take it up with the person who said it I suppose. Or you could imagine how it might feel to be asked about your DC’s “superpower” when they are below developmental expectations in every single area.

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

Hmm, autistic adults I know tend to disagree with you on this one.

It is ridiculous to suggest the individuals covered by that criteria shouldn’t be seen as a priority. Does anyone really think that?

Sorry something went wrong with that post I meant to say I largely agree with this and THEN ask if anyone really felt they shouldn’t be prioritised ?

I'm not feeling alienated, but I imagine people who have a child with autism are when it's assumed they mustn't be severely impacted because they can talk! My point was you can't make assumptions about how much people are affected purely based on non-verbal/verbal etc as its no way that simple.

And I havent heard anyone on this thread making a point that their child isn't one of those with a learning disability in the way you describe.

this is really sad to see all this arguing and anger. Adults who are later diagnosed aren't getting a form of fake validation as you say @Chilloutsnow that's a low blow to many who will be reading this and really want every child to get the diagnoses and support they need before they reach crisis point. Why can't we let everyone campaign for this and stand together? I hope we can 🌸

And that justifies repeatedly making insulting and ableist comments towards people they deem not autistic enough does it?

@FloatingBean that’s helpful, thank you.

This is the Tories' favorite trick and it keeps on working.

Slash funding so someone else has to cut services - councils shuttering libraries, schools selling off playing fields, NHS trusts shoving people off waiting lists - and then sit back and watch communities tearing themselves apart.

The thing is that if a woman has gained a degree and found a partner and had a career and raised children- even if she has also been misdiagnosed with depression and wondered why she has no close friends and felt exhausted by just coping day to day and finally burnt out to the point that she queried and then received a diagnosis of autism in later life- her life has been so much more varied and full and interesting and even social and, yes, independent than the life we are afraid awaits our most severely affected DC. (Whether or not they are verbal, that’s a red herring) So yes that woman deserves a diagnosis and understanding and compassion and appropriate support. It would have been better by far if it could have come earlier for her.

But actually, I think she should also bear a much greater portion of the burden for supporting those in the autistic community for whom no amount of masking or coping or strategies are going to enable the same life experiences that she has enjoyed. And it’s definitely a step to far to ask the most severely affected, the ones who can’t advocate for themselves, and their careers, to spend their energy advocating for the more able, more visible, more included woman in my example.

Are you autistic?

But actually, I think she should also bear a much greater portion of the burden for supporting those in the autistic community for whom no amount of masking or coping or strategies are going to enable the same life experiences that she has enjoyed. And it’s definitely a step to far to ask the most severely affected, the ones who can’t advocate for themselves, and their careers, to spend their energy advocating for the more able, more visible, more included woman in my example.

What the fuck is going on here? Who is asking who to do what?

You know a late diagnosed autistic woman and a carer of a child who can't advocate for themselves might actually be the same person, and some of the comments on this thread have been awful (@Chilloutsnow)

As a woman with gcse level qualifications, two children with ND, a recovering alcoholic (Probably ADHD related) who's tried and nearly succeed in committing suicide twice, who's from/ living a middle class miserable life and who's wholly focused on clinging on by her fingertips to manage the childrens issues and unlock support for them so they have a greater chance of being less of a shit show in society I really can't see what the problem is in demanding more help and more resources for the whole community. It's like feminism. You advocate for all of the community, even the ones with access to more money and personal resources because we all could do with professional input. We wear ourselves out fighting a rationed system that's not working. We should be united in demanding better for all. Autism and ND aren't superpowers when navigating a world designed for NTs. I'm sure that as you all know e have spiky profiles. So support will look different but the support is usually still needed. And I can promise you that if it's not necessary pride will make sure it's not accessed in the majority of cases

The prison population is over populated with ND people, domestic victims likewise. These have real costs for individuals and society

Receipts https://www.thebraincharity.org.uk/neurodiversity-in-the-criminal-justice-system-helping-prisoners-with-neurological-conditions-get-extra-support/#:~:text=Studies%20have%20shown%20UK%20prison,of%20neurodiversity%20within%20the%20system.