Page 19 | Majority of child autism referrals will be rejected under new criteria SW England

noblegiraffe · 2023-03-26T19:12:44+00:00

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 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?

FloatingBean · 30/03/2023 10:01

IncessantNameChanger · 30/03/2023 09:58

But what if your a parent who doesn't like confrontation or doesn't feel confident to do any of this? I have told countless parents their legal rights. Some exercise them and some just keep waiting for the LA to sort it out. Some quote the law and it makes no difference.

Show quote history

Which is why I said “Parents should be supported to…”

Some quote the law and it makes no difference.

Then, as I said, they can enforce it. And should be supported to do so.

ShodanLives · 30/03/2023 20:29

AmericasfavoritefightingFrenchman · 28/03/2023 23:10

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.

What does this burden entail? What things should HF autistic women be doing that men and NTs shouldn't have to?

AmericasfavoritefightingFrenchman · 30/03/2023 21:05

@ShodanLives Women (and men, but PPs were feeling very exercised about women in particular) - women and men who are diagnosed later, who can navigate society and can advocate for autism awareness and support, should include in their advocacy those (who were perhaps diagnosed in early childhood, who perhaps also have a learning disability, who may or may not be verbal) who cannot advocate for themselves.

The carers of those who cannot advocate for themselves (the carers being the ones with the best understanding of their charges who are also capable of advocacy) (the carers also being likely to be women) (the carers, if parents, also being likely to be autistic themselves) - the carers generally have their hands overflowing simply caring, but when they advocate, they are constantly nitpicked and corrected for failing to include, for example, "HF autistic women" in their pleas for support or their description of autism. I think it is unfair that the group who already is utterly overwhelmed is expected to do double the work to be inclusive.

Neurotypical people should be given the opportunity to understand that autism includes both groups of people. If they want to join in advocating for support, they should include both groups of people in their advocacy.

Shhht · 30/03/2023 21:09

TomeTome · 27/03/2023 13:11

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.

That argument would imply that treatment for all medical conditions that have an average life expectancy reduction under 12 years should cease until all of those autistic people have had the diagnoses and support they require because their need is greater.

Are you advocating for that? If not, your argument is logically inconsistent.

TomeTome · 30/03/2023 21:15

I’m advocating for massively disadvantaged people who can’t advocate for themselves. By all means put all your energy into squishing me back in my box.

ShodanLives · 30/03/2023 21:55

AmericasfavoritefightingFrenchman · 30/03/2023 21:05

@ShodanLives Women (and men, but PPs were feeling very exercised about women in particular) - women and men who are diagnosed later, who can navigate society and can advocate for autism awareness and support, should include in their advocacy those (who were perhaps diagnosed in early childhood, who perhaps also have a learning disability, who may or may not be verbal) who cannot advocate for themselves.

The carers of those who cannot advocate for themselves (the carers being the ones with the best understanding of their charges who are also capable of advocacy) (the carers also being likely to be women) (the carers, if parents, also being likely to be autistic themselves) - the carers generally have their hands overflowing simply caring, but when they advocate, they are constantly nitpicked and corrected for failing to include, for example, "HF autistic women" in their pleas for support or their description of autism. I think it is unfair that the group who already is utterly overwhelmed is expected to do double the work to be inclusive.

Neurotypical people should be given the opportunity to understand that autism includes both groups of people. If they want to join in advocating for support, they should include both groups of people in their advocacy.

It seems like you think on one hand higher functioning and lower functioning autistic people shouldn't be given the same diagnosis and put in the same category but on the other hand HF people are responsible for LF people on thr basis of having it both ways.

Do you want me to to go out and rally people and demand more support for low-functioning autistic people? I might find that hard because despite being considered HF I can barely leave the house right now. You expect for me to somehow magically drum up support for others when the little support I get barely keeps me hanging on.

Maybe carers have they're hands full, but so do many of the people you are heaping all the blame and responsibility on.

ShodanLives · 30/03/2023 21:57

And by the way, the support that keeps me hanging on you seem to want to remove to give to others. Maybe that's what you mean when you say HF woman have responsibility.

AmericasfavoritefightingFrenchman · 30/03/2023 22:15

I actually didn't use the term 'higher functioning', I think it can be quite misleading because of the different ways people use it. It can certainly be unclear.

It doesn't sound like you're in much of a position to advocate for yourself at the moment so no, I wouldn't expect you to take on more in that situation.

I do generally think in life that more able people should look out for those who are less able.

In my example, I am both the late-diagnosed woman, and the carer for the person who can't advocate for themselves. I can leave the house, I am hanging on, I don't really have any outside support in either of my roles. It feels like madness to me to spend energy on my 'needs' when I look at what my DC needs. It is bizarre to think we have the same diagnosis when our experiences will be so different. So I prioritise DC and those like her. It offends my sense of justice when women like me speak only of what they need and offer no empathy or compassion for my DC.

You don't offend my sense of justice by the way. You sound like you could use a hug, or a cup of tea, or a large gin. I hope that you are able to get the support that you need. I hope things look up for you.

Shhht · 30/03/2023 22:19

TomeTome · 30/03/2023 21:15

I’m advocating for massively disadvantaged people who can’t advocate for themselves. By all means put all your energy into squishing me back in my box.

How ironic.

Do you think that the autistic children that other parents have been describing, who are having mental health breakdowns and attempting suicide due to no diagnosis or support, are capable of advocating for themselves?

ShodanLives · 30/03/2023 22:40

AmericasfavoritefightingFrenchman · 30/03/2023 22:15

I actually didn't use the term 'higher functioning', I think it can be quite misleading because of the different ways people use it. It can certainly be unclear.

It doesn't sound like you're in much of a position to advocate for yourself at the moment so no, I wouldn't expect you to take on more in that situation.

I do generally think in life that more able people should look out for those who are less able.

In my example, I am both the late-diagnosed woman, and the carer for the person who can't advocate for themselves. I can leave the house, I am hanging on, I don't really have any outside support in either of my roles. It feels like madness to me to spend energy on my 'needs' when I look at what my DC needs. It is bizarre to think we have the same diagnosis when our experiences will be so different. So I prioritise DC and those like her. It offends my sense of justice when women like me speak only of what they need and offer no empathy or compassion for my DC.

You don't offend my sense of justice by the way. You sound like you could use a hug, or a cup of tea, or a large gin. I hope that you are able to get the support that you need. I hope things look up for you.

I do generally think in life that more able people should look out for those who are less able.

But that doesn't apply to NT people apparently. And how well does someone have to be doing before they should have to 'take on more'?

You don't offend my sense of justice by the way.

Not sure you have one.

TomeTome · 30/03/2023 23:25

This reply has been deleted

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

jlpartnerrs · 31/03/2023 08:02

I'm really confused now.

I have boys. I have neurodiversity threaded through my family. We don't function but we have managed to get by. Unfortunately the world is becoming a harder place to be in, and I think that access to information about ourselves can really help neurodiverse people navigate through it.

I absolutely agree that the young people who have complex needs should be at the top of the intervention and support tree.

I have a BIL who's not a high functioning person, what ever that means. He has communication and social difficulties. My husband and I are career for him. We also have a child with a dx and another with milder issues. We both probably have "something" typically my h works in IT from home and I have had a number of jobs flitting between "ok" and burning out. I'm recovering from alcoholism. To say our family functions is laughable, however due to our financial wellbeing, we throw money at issues and don't bother with accessing the "support" available to us, we know that it isn't there

However I would like and do advocate for people to have knowledge of their condition. Without that society and ourselves internalize the message that we are weird, different, lazy, incompetent and more. This can lead to further issues of poor mental health, addiction and other complications - why is allowing young people this knowledge about themselves a bad thing? Surely it helps young people make sense of themselves?

Surely we should be advocating for every young person to get the support they need. Rather than fighting each other for the scraps, we should be uniting to demand better and more, not policing the scarcity that is?

This is a wondering out loud sort of question, but, many times I see that people end up going around in spirals, because they need a diagnosis for support. This gatekeeping isn't from statutory orgs, but charities, often. I understand that it's used to keep "attention seekers"* out but how does a charity run by volunteers not professionals, make these judgements? If they insist on diagnosis to access specialist support which is usually contracted out by a statutory body, then they can't gatekeep on the basis of a dx, can they?

Rather than us policing each other surely we should be holding the providers to account?

*"attention seekers" was used in a meeting that I sat in discussing ND (In a professional capacity)

Shhht · 31/03/2023 19:29

This reply has been deleted

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

I think I've expressed my opinion clearly: the opinions you've expressed are self-contradictory, illogical, and fair abhorrent. My "problem" is the disgusting things being said on this and the torrent of other similar threads recently.

Shhht · 31/03/2023 19:33

Surely we should be advocating for every young person to get the support they need. Rather than fighting each other for the scraps, we should be uniting to demand better and more, not policing the scarcity that is?

Indeed. Entirely deliberate pattern being repeated across UK society right now and this is just the latest disgusting manifestation. Sadly some people are so dim that they fall for it. People advocating for it should be utterly ashamed.

Tarantellah · 01/04/2023 13:12

AmericasfavoritefightingFrenchman · 30/03/2023 21:05

@ShodanLives Women (and men, but PPs were feeling very exercised about women in particular) - women and men who are diagnosed later, who can navigate society and can advocate for autism awareness and support, should include in their advocacy those (who were perhaps diagnosed in early childhood, who perhaps also have a learning disability, who may or may not be verbal) who cannot advocate for themselves.

The carers of those who cannot advocate for themselves (the carers being the ones with the best understanding of their charges who are also capable of advocacy) (the carers also being likely to be women) (the carers, if parents, also being likely to be autistic themselves) - the carers generally have their hands overflowing simply caring, but when they advocate, they are constantly nitpicked and corrected for failing to include, for example, "HF autistic women" in their pleas for support or their description of autism. I think it is unfair that the group who already is utterly overwhelmed is expected to do double the work to be inclusive.

Neurotypical people should be given the opportunity to understand that autism includes both groups of people. If they want to join in advocating for support, they should include both groups of people in their advocacy.

I personally find it very unhelpful that these two groups have the same diagnosis and are lumped together. Their challenges are completely different. People who are “low functioning” are visibly disabled and usually receive care and benefits, and aren’t expected to study and work. Their disability is more severe but the expectations placed on them are lower. Whereas people who are “high functioning” have less severe disability but their condition is invisible, so they receive little to no support or benefits, they have to go out and cope in the world by themselves, and are expected to work and study and function like NTs.

I am high functioning. I don’t pretend to understand the challenges faced by people who are low functioning. I don’t feel able to advocate for them because I don’t understand their disability or their needs. And I equally don’t think they could or should advocate for me. For example I don’t understand what it’s like to be non-verbal, and they don’t understand what it’s like to cope with a child as an autistic mother. Only the doctors are saying we all have the same condition - our experiences and difficulties are totally different.

TomeTome · 01/04/2023 16:26

The split isn’t low and high functioning though and people get so angry when you say severely or moderately impacted that the language makes advocacy difficult and frustrating. There are many autistics who are totally dependent unable to communicate or meet their own basic needs who have normal or superior IQs. I don’t think there needs to be the level of antagonism there is and I agree it’s difficult for those with no experience of other parts of the spectrum to understand what difficulties are experienced. There seems to be a very strongly held belief that more severely impacted individuals are well catered for and looked after and that they live in less stressful bubbles, where schools are empathetic and caring and the majority of needs are met. It’s not like that at all.

FloatingBean · 01/04/2023 18:02

Your description isn’t always true. Some with “high functioning” autism i.e. have an IQ over 70 but still have significant needs that are in no way invisible and still require care and benefits. DS3 is one such case, his needs are such that he has HRC/LRM DLA, receives social care support and has an EHCP with a large amount of provision/therapies.

Even before the merging the diagnoses some “high functioning” people were still diagnosed with autism, it was only Asperger Syndrome that was separate.

Tarantellah · 01/04/2023 18:11

I don’t think saying people are severely, moderately or mildly impacted is helpful either. Particularly for the people who are so-called “mildly impacted”. Because my difficulties are not mild and it minimises my condition, as well as raising expectations that I should be able to function without needing support. Also because it implies that autism is a straight line from severe to mild, which is not the case.

TomeTome · 02/04/2023 00:17

I agree @Tarantellah its the impression moderate and mild gives that upsets. I think if we could find less upsetting words then we could make things better for everyone.

Blu3Salv1a · 02/04/2023 07:08

TomeTome

“ There seems to be a very strongly held belief that more severely impacted individuals are well catered for and looked after and that they live in less stressful bubbles, where schools are empathetic and caring and the majority of needs are met. It’s not like that at all.”

And there seems to be a strongly held belief that others are just a little bit qwerky and have amazing memories or gifts to compensate alongside difficulties such as anxiety that can just be treated away.

It’s not like that at all. You can’t compartmentalise autism or give out levels. It’s too complex. If I hear that anybody has got a diagnosis I know that there are huge struggles regardless of how their individual diagnosis is broken down. Everybody who needs it should be able to go through the diagnosis process as soon as possible and everybody with a diagnosis should get the support they need. That is what should be focused on not endless nitpicking over who has it worse which you actually thankfully only see on Mumsnet.

TomeTome · 02/04/2023 09:19

You can’t compartmentalise autism or give out levels. this is part of the diagnostic process if you use dsmV now and obviously being used in the Bristol criteria. This has some nice diagrams for a quick overview but obviously you can read it in dsmV

https://www.verywellhealth.com/what-are-the-three-levels-of-autism-260233

I totally agree anyone with you that anyone with a diagnosis of autism is likely to have faces and continue to face huge challenges.

The whole “have amazing memories or gifts to compensate” is always deeply irritating. They are often referred to as splinter skills and dismissed in really high needs individuals. It means people can carry on treating them as profoundly limited without ever questioning if perhaps there is more to this individual than they see on the surface. It reduces signs of intelligence to tricks.

Making Sense of the Three Levels of Autism

Autism spectrum disorder is diagnosed at a level of 1, 2, or 3, with each indicating a different degree of severity and need for support.

https://www.verywellhealth.com/what-are-the-three-levels-of-autism-260233

Blu3Salv1a · 02/04/2023 09:37

This was discussed before. As explained by the NAS DSM 5 isn’t the most commonly used manual in the uk.

Also the NAS states:-

“DSM-5 explains that ‘severity’ levels may vary by context and also fluctuate over time, that the descriptive severity categories should not be used to determine eligibility for and provision of services, and that 'these can only be developed at an individual level and through discussion of personal priorities and targets.”

TomeTome · 02/04/2023 09:53

@Blu3Salv1a But they are very obviously recognising the different levels of severity in the Bristol criteria. The discussion isn’t really about IF some people with autism experience different levels of disability (I think we all agree they do and recognise that needs fluctuate with age/situation/comorbids) it’s about if resources (in this case assessment) should be focused on the less able.

Blu3Salv1a · 02/04/2023 09:55

Bristol bloody shouldn’t be though as spelled out clearly by the NAS and DSM5.

hennaoj · 02/04/2023 10:47

I have 3 children with Autism, the middle one, the quiet one did the least well at school. He is doing better now as he finally got an EHC in year 5, when the school and local authority eventually stopped fighting it. Apparently he didn't need one, even though he was 6 month to a year behind, and crying to me at his bedtime each each night because he struggled with the school environment. I had to jump through hoops to get him seen by a consultant for a diagnosis too, put on a stupid parenting course that I didn't need because they assume its the parent at fault. I was told by his teacher that he wasn't good at maths, yet when he got to sats year (after having a 1:1 ta for a year) he got greater depth! He's actually much happier at high school than primary as he's getting the support he needed.
The youngest, was violent in Nursery and couldn't stop moving, he nearly got kicked out and this was a council run Nursery. He got diagnosed at the age of 3, no parenting course required! He got an EHC while still in Nursery. He's doing really well at school now he's in year 4. He's in the greater depth group for Maths, gets his spelling completely correct, his handwriting is incredible. My middle child has the use of a laptop as his handwriting is soo bad.
I have no doubt my middle son would have done much better with an earlier diagnosis and support, he's certainly not less bright than his brother. He's been doing Lego for 18 years plus from the age of 6 years old at home and can easily get the better of the brothers who are supposed to be more clever than him.

My eldest has a very high iq, he struggles immensily socially. He doesn't leave the house to meet up with friends because he doesn't have any. He's in year 9, he's going to be doing higher maths next year. I had to go through the parenting course a 2nd time to get to see a consultant for him! According to the social worker he didn't have autism but the consultant saw that he clearly had. Luckily he wasn't too affected school work wise. The high school are very good with him but he really struggles with the bad behaviour on the school bus.

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.