I will also say that I think EDS spectrum conditions (which I think are hugely under-diagnosed and not as rare as previously thought) are likely to be next on the culture wars schedule.
Why do you think so? (Saith the EDS-er)
Not that the world is particularly accommodating to us right now...
I will also say that I think EDS spectrum conditions (which I think are hugely under-diagnosed and not as rare as previously thought) are likely to be next on the culture wars schedule.
Why do you think so? (Saith the EDS-er)
Not that the world is particularly accommodating to us right now...
I think that there are increasing numbers of people getting diagnoses in the UK at least - I'm thinking of this in a "these people are wasting NHS resources" type of way.
I was told by one of my doctors (herself an EDS-er) that it's become the diagnosis du jour, possibly because it's been in the news so much--at least, I've run across it in several separate "Medical Mystery" types of columns in the past two-three years, as well as on television. And of course some people DO imagine their vague or confusing symptoms match whatever they heard about most lately... But my hope is that the band-wagon types will eventually drop away without doing too much harm to the ones who really have it, and need help.
Oh yes, we've had this as well. 'Why do you use a wheelchair if you can walk?' 'You could do this yesterday, you could do it today if you tried hard enough.'
Oh yes, we've had this as well. 'Why do you use a wheelchair if you can walk?' 'You could do this yesterday, you could do it today if you tried hard enough.'
At our church we share parking with a gym. Why should they use a car when they can run, jump, pump iron and the like?
Kathleen Stock who was responsible for the attack on ND people in academic life I mentioned above is now attacking young women who use disability aids for mobility. (Not unrelated to ND people either, because of the overlap with EDS)
I wonder at what point more people will wake up to the fact that these sort of attacks are all about maintaining the supremacy of a narrow privileged elite at the expense of others and making sure they dont pay their share for society through any form of social security?
Someone like Uta Frith is a useful tool for them. She's a true believer in her nonsense who wants her outdated takes to be relevant again - responded to here by some of the many academics whose work she ignores or seems not to understand
Uta Frith is in the press again arguing that autism has become so broad as to be close to meaningless, and that heterogeneity undermines the diagnosis.This is a sustained narrative repeatedly platformed with little demand for supporting evidence relying heavily on her credentials.
We have an onus to push back when claims like this are presented as scientific conclusions without evidence. What senior researchers say in the media shapes clinical assessment, teaching, policy, resources and whether autistic people are believed. Claims that autism is “meaningless” quickly become claims that some people are not really autistic, are taking resources from others, or do not deserve support. That is especially dangerous in a political climate preoccupied with supposed fakers, benefit scroungers and people “clogging up” waiting lists.
And the last time she did this by Professor Sue Fletcher-Watson - Professor of Developmental Psychology at the Centre for Clinical Brain Sciences, University of Edinburgh.
Both note the particular danger of Frith's attack on women and girls being finally recognised and diagnosed better. As Monique Botha puts it
Nor is it credible to explain autism away as anxiety in girls, depression, or a diagnosis anyone can simply buy, while dismissing quantitative and lived-experience evidence. Railing against modest, hard-won adjustments is a bizarre response to a marginalised community.
Note that Stock too attacks women - she piled in on the back of Frith's last round of media appearances to attack the diagnoses of Autistic women - as well as going after mobility disabled young women today in the Times.
She used her anti-trans campaigning to represent herself as a 'feminist' but these pieces come off as insidious misogyny disguised as concern.
And this isnt fringe stuff either - both of them get on the Today programme on Radio 4 and in mainstream newspapers.
To me these things all become part of a toxic sexist eugenicist far-right brand of scapegoating promoted by the media, which ties in neatly with greed and rationales for low taxes and public service cuts.
I find it sinister and dangerous and I'm dismayed by the way the government seems vulnerable to co-option by these agendas as it looks for cuts to education, health and social security.
It's also so baffling, because how does anyone using a mobility aid affect her (Stock I mean)? It's such a weird stance to take.
There is also seemingly some overlap with EDS and being trans, which I wonder if like with ND issues is about being in a position where you're more conscious of the ways in which your body is "wrong" (obviously not actually wrong!). A lot of surgeons who do gender affirming surgery have had to adapt their surgical techniques to accommodate EDS patients due to the difference in skin healing and scar tissue development - I don't know if there are any official stats on this but it's well-known amongst trans people choosing what surgeon to go with.
There is also seemingly some overlap with EDS and being trans, which I wonder if like with ND issues is about being in a position where you're more conscious of the ways in which your body is "wrong" (obviously not actually wrong!).
I wonder whether there are genetic variances (perhaps to do with tissue formation or endocrine function) that are common factors in a variety of differences e.g. could the same differences that are associated with changes in collagen in EDS cause changes in brain tissue that, in combination with other genes, express themselves in transness and/or neurodivergence?
It's also so baffling, because how does anyone using a mobility aid affect her (Stock I mean)? It's such a weird stance to take.
It fits with discredited theories of 'social contagion' which she also uses to attack trans and autistic people but it has an equally sinister side of misogyny- it's a poorly reskinned version of 'hysteria' with which she especially, it seems, targets women.
The young woman she demonised was on TikTok - therefore it's an ill-conceived 'trend' and other young women are getting it by 'social contagion'.
This is all about doing epistemic violence.
It denies the experiences of women, trans people and disabled people portraying them instead as witless gullible sheep, easily deceived and led astray by shallow social media, whose accounts of themselves therefore are wrong and shouldn't be credited- unlike her the 'rational' superior 'adult' critic and judge who 'knows better' and is above such things.
You then see the nasty way she piggy-backs on the rhetoric of the current Labour government about helping 'young people to stand on their own two feet'. It sounds like a good thing if you dont recognise the epistemic violence and denial of young people's realities and experience that is part and parcel of it.
The cuts Labour are looking for don't exist without massive harm and cruelty - so that means epistemic violence - devaluing and discrediting disabled voices so they can be overridden without electoral cost.
Also the raw meat Labour wants to throw to far right voters means epistemic violence too - reasons not to listen to trans people and those affected by racism, to discredit and ignore their accounts of how this cruelty affects them.
The same newspaper that carried Stock also carried a sickening attack on disabled people and their support needs by Jeremy Clarkson - it specifically mentioned young people with autism and ADHD - and likened disabled people to dogs - but with the caveat that at least dogs are 'grateful'.
This is the Murdoch-owned Times, so it shouldn't surprise us that they're happy to carry this kind of vile stuff.
What outrages me is that the Labour government goes along with, enables and does not tackle this because it suits them, and that through her attacks on trans people Stock successfully represented herself as a 'feminist' to the media when she is anything but.
There are currently fascists going around in Scotland imitating Mussolini's Black shirts but not all fascists are so obliging as to deliberately invoke classic WW2 era tropes so they can be readily recognised.
People are bad at recognising it in its 'polite' well-spoken forms where a white male able- bodied elite and the women who support that and devalue the 'wrong sort' of women dictate who are 'useless mouths' fakers and agents of contamination who undermine good decent elitist white society like 'we' had in the 1950s before all this 'woke nonsense'.
Papers like The Times still carry an aura of respectability from when they weren't vehicles for disgusting fascist propaganda against targeted minorities. Supporting them, writing for them and advertising in them doesn't carry nearly enough stigma.
Oh yes, we've had this as well. 'Why do you use a wheelchair if you can walk?' 'You could do this yesterday, you could do it today if you tried hard enough.'
Is it that difficult for people to understand "I can walk, but not well / not far / not fast / not equally well every day"?
For a person who can walk well, a wheelchair is a significant inconvenience in almost every circumstance. People aren't going to choose to use a wheelchair unless they feel they need it. Why isn't the mere fact that someone is choosing to use a wheelchair enough for people to understand that they must benefit from its presence?
Uta Frith is at it again - this time in The Times attacking Chris Packham - he cant be autistic because she's seen him on the telly being an excellent communicator!
Something I cant stress enough - autistic people often have what's known as 'spiky profiles' - you might be excellent at some things and then extremely disabled at others in a way that looks completely counterintuitive to allistic people who think you must be faking your disabilities because it doesn't make sense to them that eg. someone who can eloquently talk about a special interest on TV or in front of an audience might be terrified to phone a stranger or unable to manage seemingly simple household tasks.
I've been directly personally harmed in the workplace by the attitudes she is using her well-past-its-sell-by-date prestige to spread. And she's doing it in right wing media which has the agenda of delegitimising the disabilities and diagnoses of people like me.
None of this helps people- I'm facing redundancy and being forced into early retirement because I cant get the accommodations I need to stay in work and the kind of nonsense Frith is promoting has been part of the picture. The government loses tax revenue when people are forced out of work.
Goverment economising on 'Access to work' by offering inadequate accommodations because they're cheaper is part of the picture too.
The workplace has changed over my lifetime in ways that are in my experience, more hostile to ND people but instead of making management pay to reverse the changes, the government picks up part of the bill and skimps on paying enough to make up the difference- and then because even skimping is expensive, blames us and tries to pretend our needs dont exist.
The BBC is repeating Frith's nonsense at length in a so-called 'in- depth' article which has tiny bits of 'balance' from autistic scholars. It's a choice to platform utter crankery and to give it huge exposure like this. It will harm people. I wont link for that reason - it helps spread her misinformation.
The other night Channel 4 put out a terrible unethical documentary attacking and undermining ADHD which cherry-picked so blatantly from the few genuine experts they consulted that they've protested and repudiated the programme. The Guardian (though it has since carried a critical article) had a glowing television review of it (written by an anti-trans journalist of course - they're important players in this)
These are both public service broadcasters - manufacturing consent for the government to join in continuing and worsening underfunding of services using cranks to justify it and attempting to set the clock back decades.
The other night Channel 4 put out a terrible unethical documentary attacking and undermining ADHD which cherry-picked so blatantly from the few genuine experts they consulted that they've protested and repudiated the programme. The Guardian (though it has since carried a critical article)had a glowing television review of it (written hy a transphobic journalist of course - they're important players in this)
Thanks Louise.
I found the programme rather disjointed. The narrative centred on the dilemma of a mother, and her son who had been diagnosed with ADHD, in relation to him taking prescribed medication. Among the talking heads (opinions from various medically-qualified individuals), there was a brief reference to the way that ADHD and ADHD diagnosis has become monetised, which I would like to see investigated more fully. But the most jarring part came at the end, with the abrupt conclusion that ADHD is a social construct, not a neuro-developmental condition, and the additional point that the education system bears a significant responsibility for creating the problem. (And the disconnect continued into the end credits.)
Balanced it was not - it never really departed from a rather skeptical point of view. I'm not at all surprised about the reaction and the complaints.
These are both public service broadcasters - manufacturing consent for the government to join in continuing and worsening underfunding of services using cranks to justify it and attempting to set the clock back decades.
Technically, Channel 4 isn't a public service broadcaster, but it does have a distinctive public service remit.
ADHD wouldn't be 'monetised' at all though, if dreadful underprovision and underfunding on the NHS didn't force people - in desperation to save their jobs, their ability to pay for housing and their lives and mental health- to seek private diagnosis which they often can't afford but it's that or go under.
What happens when that gets 'researched' by media is that ADHD people get further attacked and have doubt cast on their diagnoses. The BBC did a hit job the other year on private ADHD diagnosis with the result that some people lost their NHS shared care agreements, many found they could no longer access that route and many more faced increased prejudice at home and in the workplace. 'Researching' this really doesn't help - there is excellent medical research on the extent of underdiagnosis.
We know what to do - it requires paying for what needs done.
I'd advise being very wary of those kind of arguments, because they can be a Trojan Horse that is used to subvert people on the left who worry about things like 'Big pharma' to advance a harmful right wing agenda of 'No adjustments, no benefits and no increased public service provision - they're all faking or deluded with dodgy diagnoses'. Meanwhile the routes to public service diagnosis and support become so scarce and difficult as to be basically inacessible and non-existent for lots of people who suffer as a result.
These kind of 'wellness' and ' monetisation' agendas are really dangerous because they have potential to escape the Daily Mail/ Express circles and worm their way into what were once left and centre spaces - manufacturing an elite 'consensus' like the one we see against trans people where far- right style scapegoating becomes respectable 'common sense' and you cant vote for Labour to get it out, because Labour have embraced it.
Just like the way persecution of trans people weaponised 'reasonable concerns' and cloaked itself in the left- leaning language of women's rights and worries about children on medication, I think it's necessary to also watch out for the 'reasonable concerns' playbook here.
I agree Louise, but I’d also state that saying something is a social construct as a gotcha is also ridiculous. Childhood is a social construct, all medical diagnoses are social constructs, love is a social construct, aircraft control is a social construct - people still die if these things are fucked up.
There seems to be a general push for biological essentialism which is deeply unhelpful in many areas of life.
Similarly Frith, arguing the toss over ASD diagnosis because of her professed concern for people with intellectual disability who also have autism, is really stupid. How about deciding that support and understanding of intellectual disability is really important regardless of whether those people also have autism or not ?
Part of the issue is that UK child services are deeply unwilling to diagnose children with intellectual disability and that leaves parents with only the autism or adhd diagnosis to explain their child’s difficulties. They look at their intellectually disabled child and notice, entirely reasonably, that they are nothing like Greta Thernberg. What is happening there is not other people being misdiagnosed with ASD, it is the diagnostic overshadowing of intellectual disability.
Oh totally - and thanks for that very important insight.
This also I think really hits the nail on the head -
There seems to be a general push for biological essentialism which is deeply unhelpful in many areas of life.
This is a key.
Something I've been noticing recently and have heard people affected by racism saying it too, is that these things are all of a piece - and without crossing the streams too much - the Jason Arday attacks brought it into focus.
The main attacker describes himself as a 'race realist' - the biological essentialist approach to racism.
Many of the journalists who were pushing it are notorious persecutors of trans people - gender essentialists.
Many of them are also fans of Frith and determined ablists who want to treat disabilities and different neurotypes as social contagion which are all in people's heads. For them the only 'real' disabilities can be seen in brain scans or have obvious physical manifestations.
It all rings horrific bells for me as someone who's read about historical fascism and eugenics. Underpinning some people's ideas of 'meritocracy' are really false ideas of biological hierarchies - the better to attack any social justice, social mobility and redistribution of wealth. There's a lot of billionaire money in this.
Their notions of 'free speech' are about being able to use their financial power and social capital to push these views without them correctly being labelled as hate speech which ought to be boycotted and shut down.
Fascism these days doesn’t typically come goose stepping and swathed in swastikas ranting about inferior races and useless mouths and that women belong in the home only good for having babies. It gets on the BBC and Channel 4 and in The Guardian with its 'reasonable concerns' and in all the far-right media and social media, pushing back on progress that levels the playing field.
The 'master race' types believe equality is an outrageous attack on their 'deserved' place in society that they got from their good genes and superior breeding that produces 'superior' culture, but they come in the guise of politely-spoken respectable middle-class people- especially women- because nobody readily associates that with Nazi thugs. But that's who they are and who's paying for a lot of it.
These people are ideologically fascists - and that's what the biological essentialism is about.
and the additional point that the education system bears a significant responsibility for creating the problem.
Statements like this contain some truth. There are ways that you can structure schooling that tend to be easier for various ND people to manage, and there are ways that make it harder.
Modern schooling tends to demand high level executive function skills at an early age. The pervasiveness of the use of computers in education, and the wider array of sources that class and homework tend to be drawn from creates a much higher level of complexity and distraction than my generation had to deal with. Less time to move, to engage in free play in playgrounds and so on is also a problem.
There are real ways in which current schooling practice is worse for many ND people than schooling 40 years ago, despite the fact that awareness of ND conditions has risen dramatically.
...
Modern schooling tends to demand high level executive function skills at an early age. The pervasiveness of the use of computers in education, and the wider array of sources that class and homework tend to be drawn from creates a much higher level of complexity and distraction than my generation had to deal with. Less time to move, to engage in free play in playgrounds and so on is also a problem.
There are real ways in which current schooling practice is worse for many ND people than schooling 40 years ago, despite the fact that awareness of ND conditions has risen dramatically.
This reminds me of a very good article I saw recently on Linked In which draws heavily on Robert Chapman's book Empire of Normality
I agree Louise, but I’d also state that saying something is a social construct as a gotcha is also ridiculous. Childhood is a social construct, all medical diagnoses are social constructs, love is a social construct, aircraft control is a social construct - people still die if these things are fucked up.
There seems to be a general push for biological essentialism which is deeply unhelpful in many areas of life.
You can say that again. And more than unhelpful, I think it's actively harmful to the lives of many people.
ADHD wouldn't be 'monetised' at all though, if dreadful underprovision and underfunding on the NHS didn't force people - in desperation to save their jobs, their ability to pay for housing and their lives and mental health- to seek private diagnosis which they often can't afford but it's that or go under.
…
We know what to do - it requires paying for what needs done.
I agree about the life-changing consequences for individuals, but it is our fate, in capitalist societies, for our lives to be ever-increasingly commodified, and there's no reason why particular social constructs, such as medical diagnoses, should be somehow exempt from this.
In this regard, ADHD diagnosis is a fairly straightforward illustration of the effect of supply and demand on a commodity - when demand exceeds supply, prices increase. (And providers enter the market to supply that demand, and make a profit, which is the aspect of monetisation that I was originally thinking about.)
In the NHS, under-provision and under-funding are here to stay. As is clear from NICE's description of its own decision-making process, there's a finite pot of money to pay for it all. In effect, medical conditions enter a competition for resources. The mechanism for deciding on the winners is complex, but where biological essentialism comes into play is to deny the reality of some social constructs, while insisting on the reality of others.
The idea of a diagnosis is a social construct, it exists only in the context of a particular set of social relationships. In various times, places, societies, it did not exist.
When we identify or “diagnose” neurodiversity - we are as a society identifying some aspect of that person as different enough from most people for it to be useful to be described.
What the current argument seems to be about is whether people so diagnosed are different enough from most people, what causes the difference, and whether it is personally or socially useful to use a diagnostic label.
People who highly value conformity may think you have to be more different, or experiencing a higher degree suffering to justify other people to have to make accommodations or spend money as a society or a business. They may attach a moral value to this.
The complication is the grain of truth. To develop resilience you have to experience some level of challenge, you gain the ability to manage through practice. People arguing about over diagnosis often argue we are undermining the development of resilience by over medicalising and over accommodating and thereby creating dependence and unintentionally doing harm.
But this argument is usually based on assuming more diagnosed people means weakening of diagnosis (people are not different enough from most people to require diagnosis) rather than any critical analysis of whether identification is improving or whether incidence is increasing for any wider reason.
Take ASD, arguably the rise of information technology has increased the social value of the specialist skills a certain group of people with ASD find it easier to acquire. If they have valued social roles and higher incomes, they are more likely to find a partner and have children, if ASD is a least partly genetic this will result in more people with ASD.
Likewise, people seem amazed that the generation of young people who were in their developmental window during the covid 19 pandemic have more mental health problems. Despite that they lived through a global catastrophe of a scale not seen since the early 20th century, their education was disrupted, their social development was interrupted and we don’t fully understand the long term impact of Covid on the nervous system. People don’t want to believe it could be “real” because it’s frightening.
Yes, but in those terms, we have developed the idea of medicine - in another time and place the same condition would be a curse, the result of an angry God after a broken taboo, or a person exchanged by the fairies or perhaps a saint suffering for their visions of God.
These ideas, names, and concepts are created by societies in which we live and they have profound effects in how respond to them. If we are aboard ship and someone is struck down by an angry God, suddenly can’t speak or use one half of their body, whilst the ship is tossed around in a terrible storm sent by the same God - perhaps the safest thing is to throw the fool who offended God over the side to placate that God ?
What is going on right now is a conflict over the social construction of these diagnoses and it is frightening for those directly impacted, because the consequences of how societies understand these things are huge.
I'd say definitely, because the 'ideal' weight for one body is not the ideal weight for another. But even for one body there isn't really an ideal weight. For example, the ideal weight for me if I want to maximize happiness in my life is probably different from the ideal weight if I want to live as long as possible, and probably both are different from the weight I should aim for if I want to minimize how much health care I need. If we can't define what the healthy weight for one person is, we definitely can't define obesity for a whole society of people.
And BMI was never meant to be used as a medical diagnostic tool, but simply as a demographic measure - it was invented by a sociologist, not a doctor. The podcast Maintenance Phase has a really informative episode on the subject (just titled "BMI").
There's also no reason as to why ADHD needs to be diagnosed by a specialist as it's quite a straightforward process - in the US any psychiatrist can do it. Much like with gender dysphoria diagnoses being unnecessarily funnelled off to specific gender identity specialists, making the process more bureaucratic (and more expensive) than necessary is part of the problem. There is no reason why it has to be like this, it's a political decision to make it harder than necessary.
Whilst it is technically true any psychiatrist can diagnose ADHD (and some other professions too) @Pomona , we are generally best at things we do most frequently. Mental health professions generally end up working in particular specialities, whether that is with a focus on particular diagnoses, or secondary, tertiary or inpatient care.
You are likely to get a better quality assessment from someone who does it regularly, than someone who does it intermittently. This matters because misdiagnosis means people get inappropriate treatment for the issues they are having. If, for example, you have bipolar disorder it is not helpful to be treated for ADHD, and vice versa.
Like a lot of neurodiverse and mental health conditions, symptoms overlap between conditions and distinguishing between them is not always easy - and the potential effective treatments may be quite different.
There was a joke going around that to save money autism diagnoses are being outsourced to Yasmin, Sharon, Wayne and Lewis in form 7c who have shown they can reliably spot autism in a new student within one playtime.
so it's more than a joke, there's a kernel of truth that we're clocked as people to be disliked and ill- treated without anyone having to carry out a detailed professional diagnosis.
On the flip side I've often had the experience of really rapidly clicking with other people who turn out to be AuDHD. I've likened it to the old fashioned dial-up modem making its little beeps and noises before it suddenly establishes connection and BRRrrrrrrrrrrrrrrrrrr!
I've also noted that certain fields and hobbies are ND rich - my own friend group which because of our ages came together entirely undiagnosed and all turned out to be ND of one flavour or another.
Because of the way disability is handled and labelled in the workplace and benefit system and because of the way medication works there is still a role for medical diagnosis (despite the fact accommodations are meant to be available without formal diagnosis that generally doesn't happen or is much harder to get).
But I think in future as the stereotypes are replaced with knowledge about monotropism, sensory differences etc and those dimensions become better known, formal diagnosis will become less important to people's identity. Academic research is showing that self-diagnosed people tend to get it right and a lot of research includes self diagnosed people for that reason.
My personal experience is that once I had the medical diagnosis ( which because of crap stereotypes and crap public knowledge about autism I'd never have guessed- so full marks to the consultant psychiatrist there who got it straight away.) that it no longer involved the medical profession because the useful knowledge and support came from the scholars, coaches, writers and activists and my friends of the autistic community itself - and as medication never worked for me - similar for ADHD ( if people go down the medication route though - they do need doctors).
It's targetted for attack though because the cost-saving and neuronormative fashions and traditions of the workplace and education that harm ND people are expensive to reverse and remove, and right wing governments dont want to pay for that - so people face intensive hoop jumping for scraps of accommodation- and if you dont have a formal NHS diagnosis, screw you entirely! - is the norm. And even that's considered to be too generous by our current government who'd like to set the hoops on fire while they're at it.
We really need a Union specifically for ND people to fight back against conditions in the workplace and political attacks because Unions as they stand, though they do good work, work within the current disability system and dont question it and its ablism and the fight for scraps of accomodation through hoop jumping, as opposed to changing the system to make it more accessible overall in a way that could help lots of people.
Also, ADHD can be observed on brain scans as can many different neurotypes.
Not, as I understood it, in a diagnostically useful way. My understanding was that while there were statistically significant differences between ADHD brains and NT brains, those differences were small compared to the natural variation between individuals.
The sense I have of the current state of affairs is that it's like using height to diagnose a person's sex, but worse.
Also, ADHD can be observed on brain scans as can many different neurotypes.
Not, as I understood it, in a diagnostically useful way. My understanding was that while there were statistically significant differences between ADHD brains and NT brains, those differences were small compared to the natural variation between individuals.
The sense I have of the current state of affairs is that it's like using height to diagnose a person's sex, but worse.
Oh sure, to be clear I was simply responding to the idea that ADHD is not observable on brain scans - not suggesting that this should be used for diagnosis.
There was a joke going around that to save money autism diagnoses are being outsourced to Yasmin, Sharon, Wayne and Lewis in form 7c who have shown they can reliably spot autism in a new student within one playtime.
And sadly the parents and related adults of these charming children are equally good at spotting it in co-workers within half a working day and applying the same bullying. As Louise says, it's be no means always a pleasant experience being autistic in the workplace.
There was a joke going around that to save money autism diagnoses are being outsourced to Yasmin, Sharon, Wayne and Lewis in form 7c who have shown they can reliably spot autism in a new student within one playtime.
And sadly the parents and related adults of these charming children are equally good at spotting it in co-workers within half a working day and applying the same bullying. As Louise says, it's be no means always a pleasant experience being autistic in the workplace.
I didn't have a great time until I started working in IT.
A certain kind of manager is also very good at spotting and punishing the weaknesses associated with ADHD. Within days, every minor moment of inattention, or forgetting of an element of a process, is being punished and the employee already mentally ushered from the building.
This ignores the simple problem that open-plan offices are torture chambers for most neurodivergent people.
And sometimes you are the manager with ADHD (me) and you have developed compensating skills over the years that allows you to use the strengths of some aspects of ADHD while compensating for some of the weaknesses. (I was diagnosed under the DSM criteria for hyperkinesia.)
A certain kind of manager is also very good at spotting and punishing the weaknesses associated with ADHD. Within days, every minor moment of inattention, or forgetting of an element of a process, is being punished and the employee already mentally ushered from the building.
This ignores the simple problem that open-plan offices are torture chambers for most neurodivergent people.
A certain kind of manager is also very good at spotting and punishing the weaknesses associated with ADHD. Within days, every minor moment of inattention, or forgetting of an element of a process, is being punished and the employee already mentally ushered from the building.
This ignores the simple problem that open-plan offices are torture chambers for most neurodivergent people.
I found Cubicleland was awful. Were people talking to me? Excluding me? Not getting clues made it impossible to know.
My employers are meant to have quiet restorative spaces in their buildings but actually don't. After Covid they gutted our building taking away the spaces which were usable for that, making it into a completely open plan nightmare (hot desking at big shiny shared tables - no partitions) and never replaced those spaces except for one tiny nasty glass box. I'm leaving in a couple of months and will be the third ND person that I know of who's been badly affected by it.
The government moans about people getting sick and not being in work. Maybe they should try doing something about open plan offices.
I was a fully remote worker from a start of lockdown until I retired five years later. At first it was a good thing but after a couple of years I came to realise that I was totally out of touch with my colleagues, and that did affect working relationships and the personal relationships you need in the workplace to work effectively. We did have online meetings, but they just weren’t the same.
I’ll be honest. I’ve never been diagnosed autistic, but I can see some characteristics for myself and some of my children (including one with an autistic child) are convinced that I am.
In any case, if any managers set up a workplace in a way that some have more direct contact than others, then that has to be acknowledged so that harm isn’t caused to people, whether ND or not, and the quality and quantity of work that is done, which will of course matter to the management.
This, and other points about finance, is where the issue collides with the imperatives of capitalism.
The costs of making provision for people with distinctive, innovative and creative perspectives and abilities have to compete with the financial benefits. Aside from many other considerations, it is to the financial detriment of individual companies and businesses (let alone society) that assessments prevail that are normative, short-term and ignorant.
Well exactly @pease - I dunno if you've read Robert Chapman but I think you'd find his book very interesting.
This problem with capitalism is one of the reasons I think Universal Basic Income could help. It's been trialled in many studies with good results for a variety of things.
The ability to vote with our 'feet' by leaving bad employers would help but being shut out of well paid work would still be a problem.
I'm only able to afford to leave my ablist employer because I have pensions ( which I'm lucky and privileged to have) but my living standards will take a huge hit. I'm currently working my notice before leaving permanent employment for good in a couple of months- and none of it was necessary.
A place where I'd worked well for decades was turned into a hellscape for me as an autistic person because it suited management interests. Sack the senior management and undo their decisions is never seen as a 'reasonable adjustment' for some strange reason...
Instead I got pathologised - I was expected to go see an occupational health doctor. This was despite them knowing I wasn't suffering from any medical condition but was just an autistic person who couldn't do a new role which meant intensive personal interaction. And I was 'assessed' by someone who due to cuts could only offer useless band aids attempting to make me function in a neuronormative way.
And they wonder why people leave the workforce when they let management hamstring people and grudgingly offer insufficient sticking plasters if you will kindly jump through all the hoops first.
Comments
Why do you think so? (Saith the EDS-er)
Not that the world is particularly accommodating to us right now...
I think that there are increasing numbers of people getting diagnoses in the UK at least - I'm thinking of this in a "these people are wasting NHS resources" type of way.
At our church we share parking with a gym. Why should they use a car when they can run, jump, pump iron and the like?
I wonder at what point more people will wake up to the fact that these sort of attacks are all about maintaining the supremacy of a narrow privileged elite at the expense of others and making sure they dont pay their share for society through any form of social security?
Someone like Uta Frith is a useful tool for them. She's a true believer in her nonsense who wants her outdated takes to be relevant again - responded to here by some of the many academics whose work she ignores or seems not to understand
Monique Botha Associate Professor of Psychology at Durham Univeristy
https://www.linkedin.com/mwlite/feed/posts/monique-botha_uta-frith-is-in-the-press-again-arguing-that-activity-7490354031584841729-2Yqe
And the last time she did this by Professor Sue Fletcher-Watson - Professor of Developmental Psychology at the Centre for Clinical Brain Sciences, University of Edinburgh.
https://medium.com/@suefletcherwatson/the-political-role-of-the-autism-spectrum-a-response-to-uta-frith-2eba4253de6b
Both note the particular danger of Frith's attack on women and girls being finally recognised and diagnosed better. As Monique Botha puts it
Note that Stock too attacks women - she piled in on the back of Frith's last round of media appearances to attack the diagnoses of Autistic women - as well as going after mobility disabled young women today in the Times.
She used her anti-trans campaigning to represent herself as a 'feminist' but these pieces come off as insidious misogyny disguised as concern.
And this isnt fringe stuff either - both of them get on the Today programme on Radio 4 and in mainstream newspapers.
To me these things all become part of a toxic sexist eugenicist far-right brand of scapegoating promoted by the media, which ties in neatly with greed and rationales for low taxes and public service cuts.
I find it sinister and dangerous and I'm dismayed by the way the government seems vulnerable to co-option by these agendas as it looks for cuts to education, health and social security.
There is also seemingly some overlap with EDS and being trans, which I wonder if like with ND issues is about being in a position where you're more conscious of the ways in which your body is "wrong" (obviously not actually wrong!). A lot of surgeons who do gender affirming surgery have had to adapt their surgical techniques to accommodate EDS patients due to the difference in skin healing and scar tissue development - I don't know if there are any official stats on this but it's well-known amongst trans people choosing what surgeon to go with.
I wonder whether there are genetic variances (perhaps to do with tissue formation or endocrine function) that are common factors in a variety of differences e.g. could the same differences that are associated with changes in collagen in EDS cause changes in brain tissue that, in combination with other genes, express themselves in transness and/or neurodivergence?
It fits with discredited theories of 'social contagion' which she also uses to attack trans and autistic people but it has an equally sinister side of misogyny- it's a poorly reskinned version of 'hysteria' with which she especially, it seems, targets women.
The young woman she demonised was on TikTok - therefore it's an ill-conceived 'trend' and other young women are getting it by 'social contagion'.
This is all about doing epistemic violence.
It denies the experiences of women, trans people and disabled people portraying them instead as witless gullible sheep, easily deceived and led astray by shallow social media, whose accounts of themselves therefore are wrong and shouldn't be credited- unlike her the 'rational' superior 'adult' critic and judge who 'knows better' and is above such things.
You then see the nasty way she piggy-backs on the rhetoric of the current Labour government about helping 'young people to stand on their own two feet'. It sounds like a good thing if you dont recognise the epistemic violence and denial of young people's realities and experience that is part and parcel of it.
The cuts Labour are looking for don't exist without massive harm and cruelty - so that means epistemic violence - devaluing and discrediting disabled voices so they can be overridden without electoral cost.
Also the raw meat Labour wants to throw to far right voters means epistemic violence too - reasons not to listen to trans people and those affected by racism, to discredit and ignore their accounts of how this cruelty affects them.
The same newspaper that carried Stock also carried a sickening attack on disabled people and their support needs by Jeremy Clarkson - it specifically mentioned young people with autism and ADHD - and likened disabled people to dogs - but with the caveat that at least dogs are 'grateful'.
This is the Murdoch-owned Times, so it shouldn't surprise us that they're happy to carry this kind of vile stuff.
What outrages me is that the Labour government goes along with, enables and does not tackle this because it suits them, and that through her attacks on trans people Stock successfully represented herself as a 'feminist' to the media when she is anything but.
There are currently fascists going around in Scotland imitating Mussolini's Black shirts but not all fascists are so obliging as to deliberately invoke classic WW2 era tropes so they can be readily recognised.
People are bad at recognising it in its 'polite' well-spoken forms where a white male able- bodied elite and the women who support that and devalue the 'wrong sort' of women dictate who are 'useless mouths' fakers and agents of contamination who undermine good decent elitist white society like 'we' had in the 1950s before all this 'woke nonsense'.
Papers like The Times still carry an aura of respectability from when they weren't vehicles for disgusting fascist propaganda against targeted minorities. Supporting them, writing for them and advertising in them doesn't carry nearly enough stigma.
Is it that difficult for people to understand "I can walk, but not well / not far / not fast / not equally well every day"?
For a person who can walk well, a wheelchair is a significant inconvenience in almost every circumstance. People aren't going to choose to use a wheelchair unless they feel they need it. Why isn't the mere fact that someone is choosing to use a wheelchair enough for people to understand that they must benefit from its presence?
Something I cant stress enough - autistic people often have what's known as 'spiky profiles' - you might be excellent at some things and then extremely disabled at others in a way that looks completely counterintuitive to allistic people who think you must be faking your disabilities because it doesn't make sense to them that eg. someone who can eloquently talk about a special interest on TV or in front of an audience might be terrified to phone a stranger or unable to manage seemingly simple household tasks.
I've been directly personally harmed in the workplace by the attitudes she is using her well-past-its-sell-by-date prestige to spread. And she's doing it in right wing media which has the agenda of delegitimising the disabilities and diagnoses of people like me.
None of this helps people- I'm facing redundancy and being forced into early retirement because I cant get the accommodations I need to stay in work and the kind of nonsense Frith is promoting has been part of the picture. The government loses tax revenue when people are forced out of work.
Goverment economising on 'Access to work' by offering inadequate accommodations because they're cheaper is part of the picture too.
The workplace has changed over my lifetime in ways that are in my experience, more hostile to ND people but instead of making management pay to reverse the changes, the government picks up part of the bill and skimps on paying enough to make up the difference- and then because even skimping is expensive, blames us and tries to pretend our needs dont exist.
The other night Channel 4 put out a terrible unethical documentary attacking and undermining ADHD which cherry-picked so blatantly from the few genuine experts they consulted that they've protested and repudiated the programme. The Guardian (though it has since carried a critical article) had a glowing television review of it (written by an anti-trans journalist of course - they're important players in this)
These are both public service broadcasters - manufacturing consent for the government to join in continuing and worsening underfunding of services using cranks to justify it and attempting to set the clock back decades.
I found the programme rather disjointed. The narrative centred on the dilemma of a mother, and her son who had been diagnosed with ADHD, in relation to him taking prescribed medication. Among the talking heads (opinions from various medically-qualified individuals), there was a brief reference to the way that ADHD and ADHD diagnosis has become monetised, which I would like to see investigated more fully. But the most jarring part came at the end, with the abrupt conclusion that ADHD is a social construct, not a neuro-developmental condition, and the additional point that the education system bears a significant responsibility for creating the problem. (And the disconnect continued into the end credits.)
Balanced it was not - it never really departed from a rather skeptical point of view. I'm not at all surprised about the reaction and the complaints.
Technically, Channel 4 isn't a public service broadcaster, but it does have a distinctive public service remit.
What happens when that gets 'researched' by media is that ADHD people get further attacked and have doubt cast on their diagnoses. The BBC did a hit job the other year on private ADHD diagnosis with the result that some people lost their NHS shared care agreements, many found they could no longer access that route and many more faced increased prejudice at home and in the workplace. 'Researching' this really doesn't help - there is excellent medical research on the extent of underdiagnosis.
We know what to do - it requires paying for what needs done.
I'd advise being very wary of those kind of arguments, because they can be a Trojan Horse that is used to subvert people on the left who worry about things like 'Big pharma' to advance a harmful right wing agenda of 'No adjustments, no benefits and no increased public service provision - they're all faking or deluded with dodgy diagnoses'. Meanwhile the routes to public service diagnosis and support become so scarce and difficult as to be basically inacessible and non-existent for lots of people who suffer as a result.
These kind of 'wellness' and ' monetisation' agendas are really dangerous because they have potential to escape the Daily Mail/ Express circles and worm their way into what were once left and centre spaces - manufacturing an elite 'consensus' like the one we see against trans people where far- right style scapegoating becomes respectable 'common sense' and you cant vote for Labour to get it out, because Labour have embraced it.
Just like the way persecution of trans people weaponised 'reasonable concerns' and cloaked itself in the left- leaning language of women's rights and worries about children on medication, I think it's necessary to also watch out for the 'reasonable concerns' playbook here.
There seems to be a general push for biological essentialism which is deeply unhelpful in many areas of life.
Similarly Frith, arguing the toss over ASD diagnosis because of her professed concern for people with intellectual disability who also have autism, is really stupid. How about deciding that support and understanding of intellectual disability is really important regardless of whether those people also have autism or not ?
Part of the issue is that UK child services are deeply unwilling to diagnose children with intellectual disability and that leaves parents with only the autism or adhd diagnosis to explain their child’s difficulties. They look at their intellectually disabled child and notice, entirely reasonably, that they are nothing like Greta Thernberg. What is happening there is not other people being misdiagnosed with ASD, it is the diagnostic overshadowing of intellectual disability.
This also I think really hits the nail on the head -
This is a key.
Something I've been noticing recently and have heard people affected by racism saying it too, is that these things are all of a piece - and without crossing the streams too much - the Jason Arday attacks brought it into focus.
The main attacker describes himself as a 'race realist' - the biological essentialist approach to racism.
Many of the journalists who were pushing it are notorious persecutors of trans people - gender essentialists.
Many of them are also fans of Frith and determined ablists who want to treat disabilities and different neurotypes as social contagion which are all in people's heads. For them the only 'real' disabilities can be seen in brain scans or have obvious physical manifestations.
It all rings horrific bells for me as someone who's read about historical fascism and eugenics. Underpinning some people's ideas of 'meritocracy' are really false ideas of biological hierarchies - the better to attack any social justice, social mobility and redistribution of wealth. There's a lot of billionaire money in this.
Their notions of 'free speech' are about being able to use their financial power and social capital to push these views without them correctly being labelled as hate speech which ought to be boycotted and shut down.
Fascism these days doesn’t typically come goose stepping and swathed in swastikas ranting about inferior races and useless mouths and that women belong in the home only good for having babies. It gets on the BBC and Channel 4 and in The Guardian with its 'reasonable concerns' and in all the far-right media and social media, pushing back on progress that levels the playing field.
The 'master race' types believe equality is an outrageous attack on their 'deserved' place in society that they got from their good genes and superior breeding that produces 'superior' culture, but they come in the guise of politely-spoken respectable middle-class people- especially women- because nobody readily associates that with Nazi thugs. But that's who they are and who's paying for a lot of it.
These people are ideologically fascists - and that's what the biological essentialism is about.
Statements like this contain some truth. There are ways that you can structure schooling that tend to be easier for various ND people to manage, and there are ways that make it harder.
Modern schooling tends to demand high level executive function skills at an early age. The pervasiveness of the use of computers in education, and the wider array of sources that class and homework tend to be drawn from creates a much higher level of complexity and distraction than my generation had to deal with. Less time to move, to engage in free play in playgrounds and so on is also a problem.
There are real ways in which current schooling practice is worse for many ND people than schooling 40 years ago, despite the fact that awareness of ND conditions has risen dramatically.
This reminds me of a very good article I saw recently on Linked In which draws heavily on Robert Chapman's book Empire of Normality
The Narrowing Door:- Neurodiversity, Capitalism, and the Invention of the Abnormal Mind
about how the workplace has changed.
I agree about the life-changing consequences for individuals, but it is our fate, in capitalist societies, for our lives to be ever-increasingly commodified, and there's no reason why particular social constructs, such as medical diagnoses, should be somehow exempt from this.
In this regard, ADHD diagnosis is a fairly straightforward illustration of the effect of supply and demand on a commodity - when demand exceeds supply, prices increase. (And providers enter the market to supply that demand, and make a profit, which is the aspect of monetisation that I was originally thinking about.)
In the NHS, under-provision and under-funding are here to stay. As is clear from NICE's description of its own decision-making process, there's a finite pot of money to pay for it all. In effect, medical conditions enter a competition for resources. The mechanism for deciding on the winners is complex, but where biological essentialism comes into play is to deny the reality of some social constructs, while insisting on the reality of others.
My friend is an ADHD coach for the NHS.
A rare creature indeed! And her client list is endless. Only the few get seen.
Provision is heavily rationed and generally prioritized only for those in acute crisis or with severe, high-risk vulnerability.
When we identify or “diagnose” neurodiversity - we are as a society identifying some aspect of that person as different enough from most people for it to be useful to be described.
What the current argument seems to be about is whether people so diagnosed are different enough from most people, what causes the difference, and whether it is personally or socially useful to use a diagnostic label.
People who highly value conformity may think you have to be more different, or experiencing a higher degree suffering to justify other people to have to make accommodations or spend money as a society or a business. They may attach a moral value to this.
The complication is the grain of truth. To develop resilience you have to experience some level of challenge, you gain the ability to manage through practice. People arguing about over diagnosis often argue we are undermining the development of resilience by over medicalising and over accommodating and thereby creating dependence and unintentionally doing harm.
But this argument is usually based on assuming more diagnosed people means weakening of diagnosis (people are not different enough from most people to require diagnosis) rather than any critical analysis of whether identification is improving or whether incidence is increasing for any wider reason.
Take ASD, arguably the rise of information technology has increased the social value of the specialist skills a certain group of people with ASD find it easier to acquire. If they have valued social roles and higher incomes, they are more likely to find a partner and have children, if ASD is a least partly genetic this will result in more people with ASD.
Likewise, people seem amazed that the generation of young people who were in their developmental window during the covid 19 pandemic have more mental health problems. Despite that they lived through a global catastrophe of a scale not seen since the early 20th century, their education was disrupted, their social development was interrupted and we don’t fully understand the long term impact of Covid on the nervous system. People don’t want to believe it could be “real” because it’s frightening.
These ideas, names, and concepts are created by societies in which we live and they have profound effects in how respond to them. If we are aboard ship and someone is struck down by an angry God, suddenly can’t speak or use one half of their body, whilst the ship is tossed around in a terrible storm sent by the same God - perhaps the safest thing is to throw the fool who offended God over the side to placate that God ?
What is going on right now is a conflict over the social construction of these diagnoses and it is frightening for those directly impacted, because the consequences of how societies understand these things are huge.
There's also no reason as to why ADHD needs to be diagnosed by a specialist as it's quite a straightforward process - in the US any psychiatrist can do it. Much like with gender dysphoria diagnoses being unnecessarily funnelled off to specific gender identity specialists, making the process more bureaucratic (and more expensive) than necessary is part of the problem. There is no reason why it has to be like this, it's a political decision to make it harder than necessary.
You are likely to get a better quality assessment from someone who does it regularly, than someone who does it intermittently. This matters because misdiagnosis means people get inappropriate treatment for the issues they are having. If, for example, you have bipolar disorder it is not helpful to be treated for ADHD, and vice versa.
Like a lot of neurodiverse and mental health conditions, symptoms overlap between conditions and distinguishing between them is not always easy - and the potential effective treatments may be quite different.
Indeed. The joke arose within the autistic community so I feel reasonably comfortable with it.
https://www.nature.com/articles/srep40700
so it's more than a joke, there's a kernel of truth that we're clocked as people to be disliked and ill- treated without anyone having to carry out a detailed professional diagnosis.
On the flip side I've often had the experience of really rapidly clicking with other people who turn out to be AuDHD. I've likened it to the old fashioned dial-up modem making its little beeps and noises before it suddenly establishes connection and BRRrrrrrrrrrrrrrrrrrr!
I've also noted that certain fields and hobbies are ND rich - my own friend group which because of our ages came together entirely undiagnosed and all turned out to be ND of one flavour or another.
Because of the way disability is handled and labelled in the workplace and benefit system and because of the way medication works there is still a role for medical diagnosis (despite the fact accommodations are meant to be available without formal diagnosis that generally doesn't happen or is much harder to get).
But I think in future as the stereotypes are replaced with knowledge about monotropism, sensory differences etc and those dimensions become better known, formal diagnosis will become less important to people's identity. Academic research is showing that self-diagnosed people tend to get it right and a lot of research includes self diagnosed people for that reason.
My personal experience is that once I had the medical diagnosis ( which because of crap stereotypes and crap public knowledge about autism I'd never have guessed- so full marks to the consultant psychiatrist there who got it straight away.) that it no longer involved the medical profession because the useful knowledge and support came from the scholars, coaches, writers and activists and my friends of the autistic community itself - and as medication never worked for me - similar for ADHD ( if people go down the medication route though - they do need doctors).
It's targetted for attack though because the cost-saving and neuronormative fashions and traditions of the workplace and education that harm ND people are expensive to reverse and remove, and right wing governments dont want to pay for that - so people face intensive hoop jumping for scraps of accommodation- and if you dont have a formal NHS diagnosis, screw you entirely! - is the norm. And even that's considered to be too generous by our current government who'd like to set the hoops on fire while they're at it.
We really need a Union specifically for ND people to fight back against conditions in the workplace and political attacks because Unions as they stand, though they do good work, work within the current disability system and dont question it and its ablism and the fight for scraps of accomodation through hoop jumping, as opposed to changing the system to make it more accessible overall in a way that could help lots of people.
Not, as I understood it, in a diagnostically useful way. My understanding was that while there were statistically significant differences between ADHD brains and NT brains, those differences were small compared to the natural variation between individuals.
The sense I have of the current state of affairs is that it's like using height to diagnose a person's sex, but worse.
Oh sure, to be clear I was simply responding to the idea that ADHD is not observable on brain scans - not suggesting that this should be used for diagnosis.
And sadly the parents and related adults of these charming children are equally good at spotting it in co-workers within half a working day and applying the same bullying. As Louise says, it's be no means always a pleasant experience being autistic in the workplace.
I didn't have a great time until I started working in IT.
This ignores the simple problem that open-plan offices are torture chambers for most neurodivergent people.
Oh yes...
I found Cubicleland was awful. Were people talking to me? Excluding me? Not getting clues made it impossible to know.
The government moans about people getting sick and not being in work. Maybe they should try doing something about open plan offices.
I was a fully remote worker from a start of lockdown until I retired five years later. At first it was a good thing but after a couple of years I came to realise that I was totally out of touch with my colleagues, and that did affect working relationships and the personal relationships you need in the workplace to work effectively. We did have online meetings, but they just weren’t the same.
I’ll be honest. I’ve never been diagnosed autistic, but I can see some characteristics for myself and some of my children (including one with an autistic child) are convinced that I am.
In any case, if any managers set up a workplace in a way that some have more direct contact than others, then that has to be acknowledged so that harm isn’t caused to people, whether ND or not, and the quality and quantity of work that is done, which will of course matter to the management.
The costs of making provision for people with distinctive, innovative and creative perspectives and abilities have to compete with the financial benefits. Aside from many other considerations, it is to the financial detriment of individual companies and businesses (let alone society) that assessments prevail that are normative, short-term and ignorant.
This problem with capitalism is one of the reasons I think Universal Basic Income could help. It's been trialled in many studies with good results for a variety of things.
The ability to vote with our 'feet' by leaving bad employers would help but being shut out of well paid work would still be a problem.
I'm only able to afford to leave my ablist employer because I have pensions ( which I'm lucky and privileged to have) but my living standards will take a huge hit. I'm currently working my notice before leaving permanent employment for good in a couple of months- and none of it was necessary.
A place where I'd worked well for decades was turned into a hellscape for me as an autistic person because it suited management interests. Sack the senior management and undo their decisions is never seen as a 'reasonable adjustment' for some strange reason...
Instead I got pathologised - I was expected to go see an occupational health doctor. This was despite them knowing I wasn't suffering from any medical condition but was just an autistic person who couldn't do a new role which meant intensive personal interaction. And I was 'assessed' by someone who due to cuts could only offer useless band aids attempting to make me function in a neuronormative way.
And they wonder why people leave the workforce when they let management hamstring people and grudgingly offer insufficient sticking plasters if you will kindly jump through all the hoops first.