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?

@hennaoj said

The amount of children that are going to be failed by this new approach is scary. These are children who could have really contributed to society in the future instead of not working and claiming benefits, regardless of iq they are need support. It's a very short sighted thing that they are planning on doing.

Which is what I was trying to communicate with my posts. I'm a child that was failed and have led a very underwhelming life, punctuated with spells of extreme distress. I honestly though things were getting better for the new generations coming along, as a parent I have done my best by my children and they have had decent interventions and a knowledge of who they are which helps them cope and advocate for themselves. That piece of paper they hold enables them to get the appropriate adjustments. It should in an ideal world not be necessary, but actually IME and the experience of other ND adults I know, it is.

It's wrong and unlawful and to gate-keep, ration and deny some children the provision for SEN and ND children, who clearly have needs. To fight and oppose this should be the hill we die on, not the endless debate about who top trumps the "most affected" stakes. We should be shouting that they all have needs and we should be able to meet them in our rich, western society.

The adult that the child grows into will need the diagnosis to apply for Access To Work support. https://www.gov.uk/access-to-work/eligibility

I know that this thead is old. I cannot let this dangerous suggestion that a diagnosis isn't needed go unchallenged.

And yet @VitoCorleoneOfMNMafia there must be many many adults who HAVE lived successful happy lives without diagnosis.

And those of us who have lost jobs and been sexually assaulted because of social impairment? Support at an early age would have spared me that.

I was diagnosed in my forties and it is life-changing. Imagine what a diagnosis at ten could have done for me.

My point was that it isn’t dangerous to suggest that diagnosis isn’t necessary or desirable for everyone.

And my point is that you can't predict that a ten year old won't need support to have a job at 20 or won't need support to learn to recognise threat signals before the rapist gets her alone. Excluding kids from waiting lists will hurt girls the most because we mask, and what "hurt" looks like is rape and poverty.

I am pro-diagnosis and think it is important, but a diagnosis is not essential for support via Access to Work. You need to have a disability, illness or health condition, but a diagnosis isn’t essential so if people need the support they don’t have to wait for a diagnosis.

For many children the benefit of diagnosis is that schools/ employers will have to believe that they are autistic.

The present situation is that any non obvious presentation of ND is treated as a behavioural issue by schools, who try to discipline the autistic behaviour out of the child, leading to trauma.

To suggest that a diagnosis is not required is the worst kind of gaslighting.

Support in school is needs based not diagnosis based. In the work place or outside of school your rights as a disabled person require proof of disability though I’m not entirely sure that requires diagnosis.

Vulnerable people are at risk of being exploited and I’m not sure masking autistic girls/women are more hurt as suggested by pp. I know some 15 years ago I read that 80% of disabled people had been the victims of assault and half of those sexual assault.

I think part of the problem is that there is a group of people with autism (some self diagnosed) who are high functioning (for want of a better description) that describe being ND as a "difference" rather than a disability and advocate in this manner. Some tv progs etc show autism in this light too where the person is just a bit awkward or has a few social issues. Most people recognise that people with profound autism are disabled and need support from an early age (as soon as possible) but for others where it isn't as obvious and the needs lie maybe more with mental health there is an easy get out clause for provider, funders etc as they can consult the forementioned group and say "nothing about us without us" etc. Mental health providers, camhs, adult services are over run, underfunded and under staffed. In some LA's autism assesment comes under these type of agencies/ services. They're having to prioritise.

In honesty if my son could have got away without being diagnosed as in, he wasn't as obvious/ profound (pick your wording) at such an young age but could have still accessed support (which we would have fought for) I would have left his diagnosis so if he could, he could decide if he needed it/ wanted it.

Support for people with profound autism looks different to that of those who are higher functioning. Higher functioning people are more likely to need mental health support for instance (this isn't that people with profound autism don't have mh needs, it's just that they can't be pinpointed as easily and sensory needs/ poor communication needs mask them or make them difficult to diagnose). Different speech therapy and levels of ot intervention, more educational input/ support given by a different means, etc are usually required not always given to those with profound needs.

How do you know that you have a disability without a diagnosis? Read the link. It says that no diagnosis is needed for mental health support only. Autism isn't a mental illness, so a diagnosis is needed for that. I've just done the initial submission for ATW so I know what the form says.

You do not need a diagnosis to be considered to have a disability. The Equality Act makes it clear someone can be classed as disabled without having a diagnosis. The guidance explicitly states “It is not necessary for the cause of the impairment to be established”. There are many ways an impairment can be proved without having a diagnosis.

I have supported many people without a diagnosis to successfully apply. You don’t need a diagnosis for Access to Work. That applies for other disabilities as well as mental health conditions. The reason the link mentions mental health conditions not needing a diagnosis is because you can apply for help with those without a diagnosis where you don’t other meet the criteria to be classed as having a disability.

Nowhere did I state ASD is a MH condition.

I’m not sure masking autistic girls/women are more hurt as suggested by pp.

I'm very sure that we are hurt by masking. I live it. Every time I fucked up socially, I blamed myself and took it out on myself. Would you like photographic proof of the self-harm scars?

I don't do self-blame nor self-harm now that I know that it's not my fault. That's the big win with a diagnosis, even if no further help follows. And I'm applying for help as well.

https://www.spectrumnews.org/news/girls-autism-high-risk-sexual-abuse-large-study-says/ Autistic women and girls are three times more likely to be sexually abused than neurotypical women and girls]. Part of that is because we struggle to recognise threats and part of it is that we learn to suppress all discomfort as part of masking, so we suppress the discomfort of being around a dangerous man even when we do detect the threat. Masking causes us to stop trusting and obeying our own self-protective instincts. I cannot think of a more insidious form of harm.

How do you prove autism without a diagnosis? You can't see it the way you can a missing leg. It doesn't come with a single, unmistakable symptom like migraine does. The diagnosis stops my employer from saying "we don't believe you" because they have the multiple page report.

Nowhere did I state ASD is a MH condition.

I wasn't accusing you of calling it one. I was referring to the ATW criteria.

In the same way people can prove difficulties/impairments to claim DLA (or CDP)/PIP (or ADP)/LCW/LCWRA, EHCPs (or IDPs, Statements of SEN, CSPs depending on where someone lives), social care support, blue badges, DFGs… without a diagnosis. What evidence one uses obviously depends on the individual and their needs, and it is something that was discussed originally on this thread so feels like the thread is going in circles.

So sad. So wrong. Not surprising though. It's just another cost cutting exercise.

I'm very sure that we are hurt by masking. I live it. Every time I fucked up socially, I blamed myself and took it out on myself. Would you like photographic proof of the self-harm scars?

I’m sorry @VitoCorleoneOfMNMafia of course I don’t need to see pictures of your scars. What I said was that the subset of autistic people you identified aren’t as far as I am aware more vulnerable to being exploited and molested. I don’t believe diagnosis offers much protection in that way.

I read some of the rest of the thread. There's a lot of it and that thing I jumped on was a "must comment now" moment. Squirrelsarestinky tried to explain to you that that's not how it works in practice. You disbelieved her lived experience as well. Why do you disbelieve autistic people's own experience of trying to get support?

This post of hers is brilliant.

https://www.mumsnet.com/talk/_chat/4771857-majority-of-child-autism-referrals-will-be-rejected-under-new-criteria-sw-england?reply=124953868&utm_campaign=thread&utm_medium=share&utm_source=copylink

In addition to the points she raises about hidden needs being easier to discover with a diagnosis, I've found that having that diagnostic label gives me a term to search with when looking for what will help me and allows me to group symptoms into clusters and allows me to acknowledge those needs as even being real.

Needs without a diagnosis look like a apparently disconnected set of symptoms: Inability to cope with loud noises; Exaggerated startle reflex; Can't cope with bright lights; Perceived as rude; Can't cope with being around people; Hates clothing labels; Can't wear bras; Hates tights; Dislikes bright colours; Likes categorising objects, such as buses by their make and model; Hates dolls; Likes Lego...

And everyone else must feel this way, because no one diagnosed me with anything so I must be the same as everyone else. I'm clearly just not trying hard enough to cope and fit in.

Viewed through the lens of an autism diagnosis, these are now explained and validated as not me choosing to be weird or difficult but as actual real issues beyond my control, and can also be grouped into: Differences in sensory processing; Social difficulties; Systematising thinking patterns. And then I can search for how other autistic people deal with these issues. And, as Squirrel noted, I can spot lower-impact issues that I didn't spot as a need immediately but would still benefit from getting help with. (Like getting a fidget toy so that I don't pull so much skin off my fingers that I bleed. I didn't associate that with autism until I started looking at the wider symptom cluster, it was filed in my head with "nail biting" as a "bad habit" of children... that I still had at 40.) I needed the diagnosis to look at the wider symptom cluster.

Without the diagnosis, I'm left with "I must try harder because everyone else puts up with River Island's loud music and bright lights, so I should be able to as well".

@FloatingBean is factually correct:

"The provision the child needs is based on needs, not diagnosis. "
It should be. It's supposed to be.
Unfortunately most of us know this often doesn't happen in practice.

It has to be based on needs because basing on diagnosis with such a wide range of presentations would be ludicrous.

As I have posted previously on this thread, I have not disbelieved anyone. I have explained the law and repeatedly acknowledged often people have to appeal/challenge unlawful behaviour. Excusing unlawful behaviour doesn’t help anyone. I have also posted those who know the law and can enforce it get better support. I am autistic myself, with autistic DC and have supported thousands others to secure support they are legally entitled to. A diagnosis is not required. It is pointless raking over round that has already been covered more than once, so I am not going to reply to you about this again.

Which is exactly why I posted parents should be supported to enforce their DC’s rights. Excusing unlawful behaviour doesn’t help anyone. Sadly, DC whose parents know the law and can advocate and enforce their DC’s rights get better support. It shouldn’t be that way, but it is and isn’t going to change any time soon.

Diagnosis helps me (I can't speak for others) by warning me that my ability to navigate social situations, including situations with a rapist present, is limited. It basically lets me know that I am a vulnerable adult in some respects so that I can take steps to protect myself. It lets me know that it's normal for me to feel profound discomfort in some social situations and gives me a reason to give myself permission to leave. It allows me to understand that my sense of danger is something that I tend to suppress as part of masking and that I should actually listen to it.

Otherwise I'm left wondering why I keep ending up alone with men who then rape me.

(Usual disclaimer: rape is always the perpetrator's choice and therefore always the perp's fault. But you are on glue if you think they don't target vulnerable people preferentially.)

Yes, but the diagnosis, in writing as submittable documentation, stops your boss/school/whoever from saying "we don't believe you, so we won't help you".

This is very much the case when a condition affects behaviour. I was transferred from "early-stage on the disciplinary pathway" to "the support pathway" as soon as work got my report. I had already said that I was on the waiting list for diagnostic assessment, yet it was the diagnostic report, the irrefutable clinical evidence, that caused my employer's huge attitude readjustment.

And before someone says "Equality Act says blah", the facts on the ground are that my job was at risk without a diagnosis.

Yes I can see that would be helpful to you @VitoCorleoneOfMNMafia but there are very many autistic people (and actually those with other disabilities) who wouldn’t gain that very small advantage, they remain exploitable to the same degree whatever descriptors you use. They benefit from diagnosis for the same reason many people do for other conditions, by that I mean research that informs treatment and allows a greater degree of surety of outcome.