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?

A diagnosis is also needed as children become adults and need support at work or claiming benefits. There is another thread on here about a young autistic person being naked outside, that situation is handled differently by authorities because of a diagnosis. A diagnosis is important.

And as for speaking over an autistic woman who’s telling you that diagnosis matters? Pretty much what I’d expect from you, given the ignorance of your posts.

Did you miss my several posts where I posted a diagnosis mattered is important? Or just choose to ignore them? I am autistic myself with 2 autistic DC and another awaiting an assessment. I’m neither ignorant or lacking in knowledge. Again, a diagnosis is important, for many reasons, but support is based on needs, not diagnosis, and parents need to be aware of that and how to enforce their rights.

I am not talking over you, gaslighting you or trying to catch you out! I have not said your experiences don’t exist. You were one telling me my experience and what I was posting wasn’t right.

The SCAAS pathway doesn’t work as you claim. Yes you quoted from it, but the quote does not say SALT, EP and ATS need to be involved before a referral is even made which is what you originally posted.

The 1st link specifically states ”There is no requirement for specialist education professional assessment (Educational Psychologist/Advisory Teacher) prior to referral. If an assessment has already been undertaken, the report should be shared with SCAAS.”and under the ‘pre-referral process’ it states to send “Therapy reports (if involved) Reports from Educational Psychology/Advisory Teaching Service if available” so no they aren’t essential. Neither does the graduated response. The link to that on the SCASS page does not state they have to be involved either.

This is so sad and so wrong. The service was chronic before. How have they slipped this in so sneakily?

PP/FII is a concern, especially in some areas, but that also happens when DC already have a diagnosis as well and again that can be challenged.

That is another major worry you are right,ai know an adult whi has had autism diagnsos from toddler years,she has never attended mainstream school,only special school,she is in her late 20s if not now early 30s never had a relationship,lives still with her parents, mentally is i would say like a teenager,her mum does all her shopping fo course anywhere she needs to go she has to be escorted, if you met her you would not doubt for a second she has major extra needs, her PIP was stopped and she was told she is good to go to get a job. Her mum said she cant even safely make meal for herself nevermind make a way out of the house etc. Living on the same street and seeing her often, i have no doubt about that.

If children are going to go undiagnosed there are going to be one day a lot of adults suffering and their needs not recognized, its like my gp said if its not diagnosed its not there,eapecially when it comes to things like PIP, help for those that might be able to hold down employment etc, my husband works for hmrc and you would think gov office would not bully special needs colleagues,oh they do knowing they have a diagnosis and they dont even know they are being bullied.

This is available without diagnosis and is only allowed if you meet the criteria from the examination board. It isn’t dependent on diagnosis at all.

DS was diagnosed with Aspergers 7 years ago thank god, he wouldn't get a diagnosis under this because like a lot of people with Aspergers he is very bright and has no behavioural issues. That doesn't mean he doesn't have a lot of difficulties though.

I suspected this would happen when they got rid of the Asperger's as a diagnosis and lumped everyone into ASD, I thought it would be a stepping stone towards making it increasingly difficult to get a diagnosis - but a lot of people were all for it. I had no idea they would go this extreme though.

ASD waiting lists are ridiculous and this is just a convenient way of drastically reducing them so they look like they are doing a good job while children are left to try and cope.

It helps in that it can help fill out a picture and the assessment will throw out lots of reports from reputable sources but DLA isn’t dependent on diagnosis it’s on demonstrable need, so available without dx. Similarly SLT and OT aren’t dx dependent.

I understand the system is different in the states. I’m not sure it sounds better.

How is this going to actually work?

Child A, probably a girl. Smiles and nods in school, copies and masks but struggles with communication and hugely socially. Is getting increasingly isolated as she moves through primary school. Holds it all together but meltdowns at home increasing and struggles with sensory issues. Child just doesn’t know what is wrong with her. Doesn’t understand her emotions and can’t articulate them. Mental health starts to decline externally and internally. Parents acknowledge the new knowledge about autism in girls, research autism and she/ he ticks all the boxes. Class teacher and SENCo know they could amass more than enough info on the referral form but can’t fill one out because they are now told not to. Child continues to dwindle, mental health worsens and early seeds of self harm and eating disorder start to imbed which is hidden.

Child B presents in the stereotypical way,struggles in the same way but doesn’t copy or mask and behaviour deteriorates in school. Teacher and Senco can start the referral process.

If I was a parent of child A( and I was) I would be creating merry hell and shouting discrimination.

This is without doubt going to causes rise in numbers of incorrect diagnosis of personality disorder in girls again. It’s just appalling. All that progress within the field of autism just ignored. Is there anything this government won’t destroy?

Only read the first page so far, but surely this is the crux of the matter?
Autism, unless the child is stereotypically presenting, is largely seen (by schools, by families and friends of the child, by CAMHS, by LA child behaviour “experts” and most other people you come into contact with) as a naughty child choosing to behave badly, with ineffective parents who are obstructing the child from reaching their potential.

We’re told that a child does not need a diagnosis in order to be supported, but unless you happen upon a holy grail of a school, you absolutely do, and even with a diagnosis, if the school/teacher/family member/camhs therapist decide they know better, you’re also screwed.

Autism is seen as an excuse for poor behaviour, for not trying hard enough (everyone else feels like that, but they’ve overcome it with determination etc). This is a societal issue which spreads into every aspect of life. No amount of autism awareness is changing this, unless a child (or adult for that matter) is presenting in a way that people recognise, they are likely to go unsupported.

This decision to only diagnose those who reach an even more strictly gatekeepered criteria just confirms this. They would never do this with something else, it wouldn’t be accepted with anything else, even though the effects of not being supported are far reaching, leading to high rates of suicide, low life expectancy, low employment numbers.

I don’t know what the answer is, increased training doesn’t seem to make a difference.
The happiest, most well adjusted autistic youngsters I know are the ones whose mothers home educate, which often puts them (the mothers I mean) at a disadvantage in the process. Not everyone is able to do this.
The education system as a whole is so fucked up right now. I’m certain that the pressure via schools is partly responsible for the increasing numbers of those needing a diagnosis. It was better 30+ years ago than it is now. Some progress we’re making 🙄

Those with a diagnosis will and do get prioritised for services. You can repeat over and again all you like that a diagnosis isn’t necessary but a) it helps services to be more useful and b)you are more likely to be prioritised and get them with a diagnosis.

Some do need a diagnosis anyway, the government Keyworker scheme being one that has been invaluable for my daughter.https://www.hee.nhs.uk/our-work/learning-disability/children-young-peoples-keyworkers

Undiagnosed people with autism are going to be more likely to end up in inpatient which has been proven to be detrimental if you are autistic.

I often read these threads where children with classic autism are directly compared to children who would previously been diagnosed with Asperger’s and am amazed at how often the needs of Aspergic people are pushed as equal or more than the needs of autistic people, or vice versa. The truth is that it is possible to be profoundly effected by either condition. This criteria to me reads as an attempt to prioritise THE MOST IN NEED and I will personally think that’s both necessary because we have very limited resources and very seriously disabled people who are not being seen because resources have already been used for the still disabled but less impacted.
I think this is the first time I’ve really seen the negative effect of the merging of the diagnosis (autism, Asperger’s, and PDD(NOS)) on what was the Aspergic community.

Oh here we go.🙄

'Undiagnosed people with autism are going to be more likely to end up in inpatient which has been proven to be detrimental if you are autistic.'
They are also likely to end up misdiagnosed as personality disordered, bipolar, depressed, socially anxious etc as adults with a multitue of failed (understandably! You can't cure autism) treatments and no self esteem

If you end up as an in patient then surely you’d fit the criteria for assessment? (Not that I’m suggesting that’s ideal!!!)

I was dismissed with depression and OCD for years.

Almost killed myself when I was at uni because I just couldn't cope. It was a few years after that I was finally diagnosed.

Are we then going to see an influx of adults being diagnosed who were labelled as coping? Who then don't get support because we're meant to have adapted by then?

I think it’s just a way of reverting to the previous demarcation between the diagnosis by stealth. Once it’s been in place will they use it as evidence to separate dx again?

There is a lot of truth in this. There is a level of severity in autism. A kid needing 24 hour care, or is nonverbal is deserving of more resources and priority than one who does not.

I have read a number of threads where those with more Asperger’s type presentations say that their need for diagnosis and support does not impact on those with more ‘classic autism’. Unfortunately there is only so much resource in the system.

I think the area will see an increase in requests to go elsewhere under Right To Choose.

@noblegiraffe you usually come across pretty sensibly but I can’t figure out your angle here. Yes it’s terrible that the opportunity for diagnosis is being withheld. I think in almost every case seeking a diagnosis is a good idea. But the diagnosis might be denied, delayed, incorrect or just downright unhelpful (eg “learning disability” and every one says ‘huh? But what does it mean?’)

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. The whole system is set up on the basis of dealing with needs precisely because some people will never get a helpful diagnosis. Yes there is underfunding which drastically complicates matters but the basis of meeting needs is still the correct one.

Re the eyesight screening- yes that’s a great example of screening out the most severe cases that present in early childhood. It’s also a great example of dealing with problems that are exacerbated by the school environment where the children are expected to do stuff they don’t necessarily have to do at home, like read from a distance. What about the shortsightedness and astigmatism that doesn’t become problematic until the teenage years? The screening does nothing for that- the child, parents and teacher are going to have to spot it between them and then deal with those needs, which will likely include seeking a diagnosis as well as various adjustments to compensate for poor sight. Obviously glasses are the best adjustment but I don’t think you would send the kid to sit in the corner and not try anything at all if you had noticed a problem.

Ok yes lets prioritise breathing for those who are actively dying and need intubation. But lets not pretend those who have asthma, COPD etc arent also in urgent need of medication for a good quality of life.

I will march on Westminster before I think the best way forwards is parents and patients scrapping over their own care needs rather than pushing back on those in charge to get everyone fucking sorted.

We're not asking for a lot.

If an LA say this then reply saying that : in this case they need to do their own asd assessment during the ehcpa as all of the child's needs have to be included with provision to meet them, if they don't assess how could they know? Or if going to tribunal, the tribunal will likely accept private dx where the la haven't assessed themselves (no opposing evidence) as they would basically be questioning the integrity of the assessing professional. If they truly think this they should report to relevant professional bodies.

Reading the criteria again.. int he disabled act there is a point where child can be taken from the parents into gov care if the person is a risk to themselves or others, and in a few of these points a parent would be saying that and risking loosing their child- threat to themselves or otherw, childs behaviour risking causing a family break up and the ultimate parent agreeing that they are not able to look after the child.

what happened with the enquiry into the abuse happening in sen schools and hospitals where autistic children are kept against their and their families wishes? Hours of driving away from their home and families.

autistic inpatients are often sectioned, just in the news how one set of parents have been going to court over 20 years over their son whos now an adult and spent all his life as an inpatient against his and his parents wishes.

google it his story is not only one,not even going to the abuse taking place in these places which is also recorded and often shared (on twitter),kids arms being twisted and broken etc.

you think autistic children dont deserve early recognition of their needs and as much support and help to prevent a family being broken up?