Autism and the New Austerity
I'd like to comment on the announcement made by NHS managers that autism assessments are to be cut back.
"Under new rules, children & teenagers will only be referred for an autism assessment if they meet one of six criteria, including breakdown of their education placement, risk of family breakdown & having very low levels of communication linked to autism."
I had thought that with diagnosis my lifelong struggles would be brought to some form of resolution, if not exactly a happy ending. I have found no help other than advice as how best to help myself as I prepare to fight, fight, and fight again. I may be armed with knowledge and self-knowledge as I enter the fray one more time, but it's clear that I am still alone. The help and support that is needed from 'society' simply isn't there and, it seems, won't be forthcoming. Resources devoted to autism are limited and need to be expanded greatly. It is plain that the authorities are not going to respond to pleas for help and increase support for autistic people. That means that the same resources are having to be spread even thinner as a greater number of people come to be diagnosed with autism. So we get the inevitably austerity. As we have seen the greatest transfer of wealth from poor to rich in history, it is austerity and retrenchment in all areas, except when it involves an extension of government power and control.
This announcement applies to children. You can take it as read that adults are considered past help. Those in need of help are of no use to society and are to be thrown on the scrapheap.
I'll comment on the article first, and then add my conclusions below.
‘Children put at risk’ as NHS autism assessments are cut back
Health service managers in south-west England say new restrictions are needed because of a huge rise in waiting lists by Chaminda Jayanetti (26 Mar 2023).
That statement makes it clear that we are talking about institutional and financial need rather than health needs.
NHS managers in Bristol, North Somerset and South Gloucestershire have announced new referral criteria for children’s autism assessments which could deny autism assessments to thousands of children. The new rules have been imposed without notice and consultation and are effective immediately. Parents are complaining that the change “puts children at genuine risk.”
The reason for the change has nothing to do with health and need and everything to do with cost and expediency. The NHS managers claim that the new restrictions are needed on account of a 350% rise in local children waiting for an autism assessment since the height of the pandemic, with waiting times exceeding two years.
It seems I got 'lucky' with heart attacks, chronic illness and relentless anxiety, not to mention employment struggles despite an impeccable academic and training record. After the world came crashing down on my head, I was finally referred for a diagnosis, waiting over two years for the assessment. My assessment came just two weeks after I had moved to another part of the country. The authorities in my new place were unresponsive, so my old health authority took it on. Had I missed out, I suspect I would have been waiting for all eternity.
The announcement has a whif of inevitability about it. And predictability. Hope for the best but expect the worst is my watchword after a lifetime's experience of broken dreams and false promises. There has been a lot of comment in recent years about the apparent epidemic of people who are being diagnosed with autism. There is no mystery. Autism has always been there, it just hasn't been diagnosed. If people struggle hard and just about 'get by,' the odds are that they may be suspected but left undetected, left alone to struggle on. Despite any number of tell-tale signs, people left me alone to struggle on. I put a brave face on it, celebrated my successes and triumphs to such an extent that I gave the distinct impression of 'winning at life.' Or, at least, of always being on my way to somewhere I needed to be. The very opposite was the truth. It took chronic illness, continued health problems, and a near fatal heart attack for detection, referral, and diagnosis. I would guess that both my father and grandmother were autistic. Neither were diagnosed. The issue was just never raised. They worked hard, struggled on, kept their troubles to themselves, never raised their voice. Those, I would suggest, are the 'Good Old Days' the authorities want to take us back to. It makes sense when it is being made patently clear that autistic people will not receive the support and help they need to thrive. The decision is being taken that autistic people are too high maintenance a social group to be worth catering for.
Despite increasing diagnosis and awareness of autism, autistic people have been left to struggle alone; there has been no expansion in help and support commensurate with the expansion of diagnosis, let alone with what is actually required to make a difference for the better for autistic people.
The new criteria were introduced by the local NHS Integrated Care Board (ICB) and Sirona, a not-for-profit organisation delivering NHS services in the ICB area.
Under the new rules, children and teenagers will only be referred for an autism assessment if they meet one of six criteria, including breakdown of their education placement, risk of family breakdown and having very low levels of communication linked to autism.
A spokesperson for Sirona said autism referrals were expected to fall due to the changes.
I'll bet they are. A reduction in referrals seems to be the whole point of the changes. The authorities have no intention of expanding the resources devoted to autism (both time and money), and so will target what little are prepared to invest at the more extreme cases.
This is cruel, inhuman, stupid, and short-sighted. And it is false economy. A little investment here could unleash the massive potentials of autistic people that are currently being wasted. Autistic people loaded with talent, ability, and enthusiasm are having to devote most of their energies in a fight for survival, just getting by without help when, with a little help, they could fly. Autistic people lose out but so, too, does society. And, far from saving money, society pays a huge price in the end. A lifetime struggle means that not only do autistic people perform well below their potentials, they suffer from mental and physical illness that requires treatment at some considerable expense. A little money spent at one end saves an awful lot of money – and unhappiness – at the other.
The new criteria for autism assessment establishes a hierarchy, one that is determined according to priority need. Paradoxically, those who would benefit most from assessment and help, in the sense of becoming productive members of society, are deemed low priority as in no priority – they will never get to the top of the list. I was told I was 'high functioning,' despite all manner of social and employment issues over the decades. It would appear that by this new criteria I would not have been considered for referral when young. In other words, rather than intervene at an early age when much harm could be averted and energies and talents properly channelled, the authorities will wait until breakdown in adulthood. That's what happened to me, after a lifetime of performing well below potential.
The new legal position does not reflect the reality of autistic experience. But that's not the point. The new rules are designed to cut back referrals and cut back the numbers of people diagnosed as autism, thereby cutting back demands for help and the pressure on resources. A letter from Sirona says that “on average 40% of the current referrals” will meet the new criteria, though this may include referrals for community paediatric services as well as autism assessments.
“We believe that the changes to the referral criteria are naive and irresponsible. We believe that it puts children at genuine risk,” said Breitnauer, a member of local campaign group Assess for Autism, which is crowdfunding a possible legal challenge to the new rules.
“The risk of death by suicide is actually greater for autistics without intellectual disability. These are the autistic people most likely to mask, mostly likely to seem fine. This is the group of children who would not make it on to Sirona’s priority list because they have developed coping mechanisms that hide the urgent need for diagnosis and support.”
That statement rings true. I developed my own coping and survival mechanisms and clung to them in the absence of anything else, in the hope that something better would one day come along. It never does. People are engaged in their own struggles for survival. 'Society' in the abstract doesn't know and doesn't care. I was 'without intellectual disability' and so thought my road to success would be by academic attainment. I earned a string of qualifications and certificates, and wore myself out in the process. I became expert at mirroring and masking, learning what certain parts of 'society' expected (education and training), and delivering top results. I looked like a success to all who didn't peer too closely into my social and private life. I was overcompensating for some very serious lacks and deficiencies. In my assessment I said that 'I failed so beautifully so often that in the end it came to look like success.' Failing in such a way comes at the risk of developing serious mental and physical illness. I am seriously impressed that I am still alive, still sane, and still sober. Humour is still my default position, but I am now looking for some tangible evidence that my continued hope is not misplaced. Lose hope in these circumstances, and you are lost.
A statement from Sirona said: “We changed our referral criteria so our resources can be directed towards the children that have the highest clinical need or are the most vulnerable. It is important that we do not continue to accept more children and young people than we can see and assess, and our new approach has also brought us more in line with services across the rest of the country.”
In other words, resources are scarce and fixed and will not be expanded in accordance with rising need and demand. Need will be redefined and denied. This is tantamount to an official declaration that the authorities simply don't care.
It's disgusting, of course. There's been such progress in autism awareness and understanding that we had hopes of moving to the next stage of autism acceptance. Changes like these seem designed not merely to arrest that development but throw it into reverse. We are going back to judging autism on how others experience it, instead of how the autistic person lives it. I am beyond anger. You don't get angry when expecting the worst is your default position. There is nothing here that surprises me. I've spent a long time seeking help and support and found that there is none beyond advice as how best to help yourself. Changes such as this merely confirm to me that the authorities have no intention at all of providing the help and support autistic people require for a happy and fulfilled life. Autistic people are of no count. That will not change without the formation of an autistic grassroots and mutual aid society. Bodies such as the NAS pressuring government won't cut it without some real social force behind it.
The NHS managers imposing the new criteria are effectively telling autistic people that your disability is going to be ignored and denied unless and until it negatively impacts us. This is wrong and disgusting, but not surprising. The authorities could care less. I have sensed the sadness and sense of futility in the various people from bodies and organisations charged with aiding autistic people. They have little to offer, but don't have the heart to come clean and tell people straight how little it is. Instead, they put a brave face on and try to make the most of the least. Much depends on your needs. I dare say that some people would benefit from a laminated communication card by which to introduce yourself to others. That this wasn't just the best thing I was offered by one organisation – after a wait of four months - but the only thing, indicates how precious little help there
is. I am perfectly able to introduce myself and communicate and could be considered somewhat eloquent.
The new criteria effectively mean that children, families, education, (and employment etc in adulthood) will have to breakdown before help and support will be offered. Children and their families won't receive the help and support they need until they are in such a bad place that it will be
hard for them to be brought back. Autistic people are being thrown under the bus when, surely to goodness, it is clear that they should receive more support and help.
Again, whilst this is disgusting, cruel, inhuman, stupid etc., it is not something that comes as a surprise to me. I have approached the authorities with respect to problems of health, housing, and employment. Time and again it was made clear to me that I am not considered a priority case. I was told by one woman dealing with social housing that I was considered 'low priority.' I replied 'you mean "low priority" as in "no priority."' She didn't respond. There was nothing for me. That was her message and I took it. How strange to come from a building family and be told by a mediocre place-sitting bureaucratic that there was no home for you. My eminently reasonable plan was to take action in the immediate instance to avert disaster in the next. The attitude of the authorities is to wait until you are poor, destitute, homeless, unhealthy, unemployed, and broken before applying a sticking plaster. The problem is that once you start to slide and then finally hit the deck, it is well-nigh impossible to bounce back.
I have to praise the idealism of people who persist in giving cogent reasons as to why the approach of the various authorities and institutions in charge of social and public health and welfare is stupid. They are keeping the flame of rationalism alive. But they are crediting these institutions and their functionaries with a care and concern they simply do not have. They are managing resources. Priorities have been set. And some people can simply go to the wall. Discussing my mental health issues with some body or other in my home town, I was offered a link to a You Tube video containing pleasant walks in the country with 'authentic bird sounds' and the possibility of an allotment. A man I exchanged views with said I was lucky. He'd have liked an allotment as a nice place to go and hang himself. He expressed a preference for a rope over the CBT he was offered (for the umpteenth time).
Children do not simply bounce back from these things, neither do their families, and neither do adults who, after a lifetime of endless struggle, finally break down, losing their jobs, their homes, their family (should they have even managed to gain these things in the first place, which is doubtful).
The inhumanity and cruelty of it all is enough to destroy whatever hopes you continue to entertain. But it is the wretched short-sighted stupidity of the approach that I find really galling. The cruelty and
inhumanism of the people with the power of decision and allocation in society appears to be a secondary consequence of their sheer stupidity. Rather than saving money, cost cutting austerian exercises like this will end up costing more in the long run. 'A stitch in time saves nine.' And ninety. Multiple people will end up needing support and help instead of one, and over a longer period of time.
The criteria are austerian, extreme, and cruel. They are, however, in tune with the 'end of the world' mentality of the times. Everywhere the language is one of cutting back, retrenchment, going without,
people as plagues and viruses, 'useless eaters.'
This new criteria – and underlying attitudes – invites years and years of frustration and futility ending in mental and physical illness for the undetected and undiagnosed. This is precisely what happened to me, despite a decent diet (never smoked, drink one pint of alcohol a week) and constant exercise. The relentless anxiety grace of struggles with an undiagnosed autism brought me to the brink of breakdown. People are being denied the help they need. This has consequences. First, people will be unheard, then they fall silent, suffering alone, bringing on mental, physical, and social breakdown. Criteria such as this will extend and entrench the health inequalities that autistic people are already experiencing. This is not the right direction at all. We need a more proactive approach to healthcare, more caring, yes, but, significantly, more intelligent. That's a point that I can't stress enough. To describe the new rules as inhuman and immoral and disgusting won't cut it in an age in which care and morality are at a low premium. The rules are stupid. Anyone who reads my written work will know that I consider the modern world to have lost its moral and intellectual bearings. It seems that key positions within the dominant political and social institutions have come to be filled with people who are also intellectually and morally bereft. I've had dealings with them. They are stupid. They merely parrot back what little they can do according to set criteria. I'm always struck by an analogy with rookie tutors marking essays at university. I did this for a while. Instead of exercising my judgement and drawing on my own knowledge and expertise, I was given a sheet which contained a list of the marks to be awarded for particular points made. You don't so much read the essays as search through them to tick off the key points which garner the marks. I rarely feel like I am having a conversation with the people who work for these institutions. They ask you for certain details, label you, classify you, see what, if anything, you are entitled to and then deliver their lines. And there is no debate, no argument. Either you qualify or you don't.
Stupid. Everywhere I look I see stupid. Not least when I look in the mirror. Rather than have spent so many years in academia, in research, and writing, I really wish I had stayed in the building trade with my dad, trained, made myself socially useful and productive. I don't care for the academy. I knew that I was swimming against the intellectual tide when I was in the universities, and so it has continued on the outside. I would have been healthier, wealthier, happier, and probably a whole lot smarter had I become a builder like my dad. I've just read this by Charlotte Gill:
"We have builder shortages. Any sensible government would get more UK citizens to train as builders. However our government's plan is more immigration. So we continue with too many Brits trained in the wrong things, at taxpayer expense, and more demand for housing. It's so stupid." (Charlotte Gill).
Incredibly stupid. I could have trained in the right thing but instead allowed myself to be seduced by the wrong thing.
'"So stupid" is now my response to so many Gov policies. They miss the point & are counter-productive so very, very often. Sigh.' (Claire Fox)
And autistic people for one will bear the brunt of this pervasive stupidity.
But if you do read my work you will see that I consider the institutional approach an attempt to compensate for the collapse of moral and social order. An internal implosion means that society becomes less and less capable of governing itself, with social and communal needs being projected upwards for remedial action at the external level. It can't be done. 'Official' society is being overwhelmed. Take a look at the shrinking tax base compared to the expanding numbers on benefits of some kind. It's unsustainable. We badly need a politics of social restitution so that society becomes capable of governing itself from below as opposed to being governed from above. We need internal order rather than external control. The external is empty. The most beautiful woman in the world can give only what she has. If there's one thing that official society isn't, it isn't beautiful. There's little point wasting your time and energy arguing that it ought to be. It's plug ugly, in fact. We should be getting organised and fighting for autism acceptance, rather than appealing to people and authorities who are so ready to plead necessity whilst throwing us on the scrapheap.
