From a scientific perspective, of course the term neurodiversity is inaccurate, and unhelpful for helping people understand what's really going on.
But the term was never intended to be scientific – the neurodiversity movement is a political movement, a disability rights movement, and in that respect – from a communications perspective – I would argue that it does serve a useful purpose.
The goal of the movement is to gain enough public awareness to ensure that autistic people, people with ADHD, and people with other consciousness altering conditions (including, I would argue, schizophrenia and the others that you mentioned) have equal rights like other protected characteristics, and can't be legally discriminated against based on their disability. The issue that the term neurodiversity seeks to address is that many people can go their whole life without ever contemplating that there might be people around them with a markedly different conscious experience (like lacking intuitive understanding of social dynamics). The term neurodiversity, therefore, aims to challenge this perspective, and communicate more broadly (ie to the general public) the idea that different people experience the world in a different way.
I do also take your point that, for parents of children with these conditions, it may be unhelpful for them to consider their children as just different, but this is where I think the neurodiversity movement would benefit by clarifying that many of these "neurodivergences" are, in fact, disabilities.
As always, the difficulty in a movement like this is that you are trying to convey a broad message to multiple different groups and stakeholders (the general public, the medical and psychiatric communities, schools, the government, parents, etc etc), and that's where things get messy (and without a coordinating force pushing the movement forward, you get issues with segmentation).
Now, I am of course open to the idea that we need a different set of terminology to ensure that we're being as precise as possible, but even using the term "consciousness" when communicating with the general public makes things difficult, as this term is interchangeable with "self-awareness" for most people. As I see it, the alternative is to wait for scientific consensus on how to define these conditions before communicating them to political stakeholders and seeking political reform, but the genie is most certainly out of the bottle now (and scientific consensus on consciousness is a long way away – not that I need to tell you that!).
I would be interested in your thoughts on how to better communicate these ideas more broadly, perhaps using different terminology – it's an area I've spent a lot of time thinking about.
Nicholas, thank you for your thoughtful, curious, compassionate discussion. I feel bad responding to such a sincere and well-reasoned argument in the comments section, but I didn't want to let such a reflective and open-minded contribution go unmarked.
I completely understand the motivation behind the promotion of the term "neurodiversity," and recognize, respect, and appreciate that the motivation is rooted in an authentic desire to help and improve the lives of folks like me and my many family members and friends with autism and other neural conditions. So though I'm strongly opposed to the term myself, I feel no hostility or negativity whatsoever against folks who use it or promote it.
I view it as a simple lack of education in a field where even the experts are often uneducated.
I'm no activist at all and feel little desire to attempt to change society's use of the term. But let me explain to you, Nicholas, along with other readers, why I believe the problems of the term "neurodivergent" outweigh any potential benefits, such as those that you mention.
I think your very first assertion contains all the troubles and paradoxes tucked into this sneaky little idea:
"The neurodiversity movement is a political movement, a disability rights movement"
But if it's a disability rights movement, what about those of us for whom autism is not a disability? I don't view myself as having a disability. So someone arguing for rights on my behalf is calling me handicapped when I'm not, which is morally fraudulent.
But, actually, it's not a disability rights movement at all, as we'll get into in a moment.
If it's a political movement. . . for who, exactly? Those who are disabled? Or those who are not disabled?
This is really the key issue: the term "neurodiversity" is pseudoscientific nonsense, without any evidence-based demarcation for who should be included in this umbrella term or why (nor can there be such a demarcation). Scientifically speaking, folks with brain tumors, Alzheimer's, traumatic head injuries, Tourette's Syndrome, schizophrenia, blindness all have neurally compromised brains, yet they are not included in this "political movement."
Who is? The folks advocating for the term "neurodiversity" generally tend to admit high-functioning autistic and ADHD folks into the club (again, even though mainstream scientists don't know how autism or ADHD work, so there's no rational basis for including those conditions and not any of the others listed above under "neurodiverse.") Neurodiversity's argument isn't that we're disabled. It's that we're NOT disabled--we're just DIFFERENT. Divergent!
Do we need a political movement for people who are different? I'm very weird, but I don't feel that people are violating my civil rights when they socially reject me for being weird. Personally, I very much feel the onus is on me to find a way to get along with others, as it is for all members of society. I wouldn't support a political movement for folks who just want to be weird and antisocial without facing social consequences. Go out there and be weird and antisocial, it's America, but you gotta face the consequences!
There's a much stronger argument for the notion that we need a political movement for disability rights. . but that's not at all how the term "neurodiversity" is being used. That's why parents of genuinely disabled children write despairing op-eds complaining about the term (https://www.bostonglobe.com/2024/05/23/opinion/profound-autism-neurodiversity/). They need help because their kids are not just weird, they're seriously impaired and sometimes not able to function, so using the airy and pseudoscientific term "neurodiversity" to imply the need for political respect and inclusion is not helpful, it's destructive.
Neurodiversity advocates are most definitely not claiming neurodiverse folks are disabled. They're saying people who act weird and strange like me should get special accommodations and be broadly accepted as we are.
Except, as I shared in the article, EVERY HUMAN BRAIN IS NEURODIVERSE. THERE IS NO NEUROTYPICAL BRAIN. Which means that everyone has flaws and quirks.
From a neural perspective, everyone is special. And it's certainly not the case that autistic brains are MORE special than all the other categories of neural quirks, like schizoaffective disorder or epilepsy.
Which leads to the source of my strongest opposition to the term: it encourages autistic people to view themselves as deserving of special treatment by others--NOT because they have a serious mental disability, but because they're different than those boring normo folks who should have to bow to our entitlement.
If you're not disabled, why are you asking for special treatment? Life's hard for everyone, and everybody has neural quirks, just most of them are different than autism. If you are disabled, then you need treatment and care, not a political movement for some kind of broad acceptance. Maybe a political movement for more treatment and research funding, sure.
Neurodiversity advocates purport to be educating society about, uh, autism. Except they don't understand how autism works. They don't know how an autistic brain is different from any other brain. They argue that autism isn't a disability, when many people with autism are disabled. These advocates make endless false and misleading claims about brains and autism while purporting to be working for our benefit.
I'm autistic and I can't hold a job or function in a group. But honestly, the burden is on me to deal with this. If I can't, a neurodiversity campaign won't help me. But medical care and treatment might.
Ogi, thank you very much for your extensive and well-considered reply.
I especially like the line "a simple lack of education in a field where even the experts are often uneducated" – this is true across the field of mental health!
Thank you for sharing the article – that certainly helps clarify your perspective. That is clearly an example of overreach, and stretches well beyond what is scientifically correct and even common sense.
I would say that, from what I've seen in the movement in the UK, it's largely focused on helping people with these conditions (especially those of us who are late-diagnosed) come to terms with the way they are, and encouraging them to not be afraid to be themselves, quirks and all. A more positive take – an extension of self-help, in essence. Which, I think, goes to show that the movement has expanded to the point where it is no longer moving in a single cohesive direction, and some of that is clearly unhelpful.
I want to focus on your point about autism not necessarily being a disability, as I think that might help us square the circle.
What is a disability? It's much easier to define a physical disability – someone with paraplegia, for example, is clearly *less able* to navigate the environment that someone who is able-bodied. But the disability is not the paraplegia; the paraplegia is an impairment, yes – but the disability arises as a result of that individual interacting with the environment. Broadly speaking, this is the social model of disability.
100 years ago, the environment was created by able-bodied humans for able-bodied humans, and so paraplegia was much more disabling. But by making accommodations for that specific impairment as a society – ramps, lifts, adjustable work surfaces etc – we can lessen its disabling qualities.
I would argue that the same applies to autism. The dark gift may confer unique benefits, yes, but – in the model you have created (which is the most compelling explanation for the condition I have seen to date), autism is defined by the inability to engage with the human supermind in an intuitive and natural way. This is the impairment – the impairment in the Why module that directs attention away from other humans. It is then the interaction of this impairment with the environment – the social environment – which causes the disability. I would argue that every autistic person is *less able* to navigate the *social* environment than a non-autistic person, just as a paraplegic is *less able* to navigate the *physical* environment than an able-bodied person.
I would extend it to my own ADHD (I'm currently in the queue for a diagnosis), which is perhaps a productivity disability, as well as social disability – the impairment causes interacting with the environment to be more difficult than for someone without that impairment.
And this is where I think the movement is useful, even if the terminology is not. Thanks to increasing awareness, I was able to self-diagnose with ADHD, and, eventually, felt empowered to raise the issue with my employer. Yes, of course, if my attention keeps wandering off during Zoom calls then it is my responsibility to refocus my attention. I do take the point – it's important not to absolve oneself of that responsibility. But, equally, by raising the issue with my employer, I am able to share the responsibility with them – not offload it, but share it – so that we are able to consider, for example, whether every call in my diary is strictly necessary. This helps me avoid placing too great a strain on my mental load and lets me focus my energy on what I'm best at. In this sense, it has the power to be less about entitlement to special treatment (though I recognise you're always going to get people who seek to abuse it in that way), and more about getting the best out of everyone – even those of us with consciousness altering conditions.
With all that said, and upon reflection, I do especially take your points about the terminology and "gatekeeping" elements of the movement – clearly using the term "physiodiversity" to describe physically disabled people would be an unhelpful narrowing of a broad range of different disabilities, and doubly so if it arbitrarily excluded people with, say, MS, as neurodiversity seems to exclude things like Alzheimer's and Parkinson's.
So perhaps this is the ultimate point – rather than using the umbrella term, we ought to be reframing the discussion in terms of how these conditions alter our ability to navigate the world around us – focusing on the strengths they imbue us with, while bringing awareness of the disabling qualities too.
Regardless, I am glad that we are able to have these conversations – thank you for engaging in the discussion!
From a scientific perspective, of course the term neurodiversity is inaccurate, and unhelpful for helping people understand what's really going on.
But the term was never intended to be scientific – the neurodiversity movement is a political movement, a disability rights movement, and in that respect – from a communications perspective – I would argue that it does serve a useful purpose.
The goal of the movement is to gain enough public awareness to ensure that autistic people, people with ADHD, and people with other consciousness altering conditions (including, I would argue, schizophrenia and the others that you mentioned) have equal rights like other protected characteristics, and can't be legally discriminated against based on their disability. The issue that the term neurodiversity seeks to address is that many people can go their whole life without ever contemplating that there might be people around them with a markedly different conscious experience (like lacking intuitive understanding of social dynamics). The term neurodiversity, therefore, aims to challenge this perspective, and communicate more broadly (ie to the general public) the idea that different people experience the world in a different way.
I do also take your point that, for parents of children with these conditions, it may be unhelpful for them to consider their children as just different, but this is where I think the neurodiversity movement would benefit by clarifying that many of these "neurodivergences" are, in fact, disabilities.
As always, the difficulty in a movement like this is that you are trying to convey a broad message to multiple different groups and stakeholders (the general public, the medical and psychiatric communities, schools, the government, parents, etc etc), and that's where things get messy (and without a coordinating force pushing the movement forward, you get issues with segmentation).
Now, I am of course open to the idea that we need a different set of terminology to ensure that we're being as precise as possible, but even using the term "consciousness" when communicating with the general public makes things difficult, as this term is interchangeable with "self-awareness" for most people. As I see it, the alternative is to wait for scientific consensus on how to define these conditions before communicating them to political stakeholders and seeking political reform, but the genie is most certainly out of the bottle now (and scientific consensus on consciousness is a long way away – not that I need to tell you that!).
I would be interested in your thoughts on how to better communicate these ideas more broadly, perhaps using different terminology – it's an area I've spent a lot of time thinking about.
Nicholas, thank you for your thoughtful, curious, compassionate discussion. I feel bad responding to such a sincere and well-reasoned argument in the comments section, but I didn't want to let such a reflective and open-minded contribution go unmarked.
I completely understand the motivation behind the promotion of the term "neurodiversity," and recognize, respect, and appreciate that the motivation is rooted in an authentic desire to help and improve the lives of folks like me and my many family members and friends with autism and other neural conditions. So though I'm strongly opposed to the term myself, I feel no hostility or negativity whatsoever against folks who use it or promote it.
I view it as a simple lack of education in a field where even the experts are often uneducated.
I'm no activist at all and feel little desire to attempt to change society's use of the term. But let me explain to you, Nicholas, along with other readers, why I believe the problems of the term "neurodivergent" outweigh any potential benefits, such as those that you mention.
I think your very first assertion contains all the troubles and paradoxes tucked into this sneaky little idea:
"The neurodiversity movement is a political movement, a disability rights movement"
But if it's a disability rights movement, what about those of us for whom autism is not a disability? I don't view myself as having a disability. So someone arguing for rights on my behalf is calling me handicapped when I'm not, which is morally fraudulent.
But, actually, it's not a disability rights movement at all, as we'll get into in a moment.
If it's a political movement. . . for who, exactly? Those who are disabled? Or those who are not disabled?
This is really the key issue: the term "neurodiversity" is pseudoscientific nonsense, without any evidence-based demarcation for who should be included in this umbrella term or why (nor can there be such a demarcation). Scientifically speaking, folks with brain tumors, Alzheimer's, traumatic head injuries, Tourette's Syndrome, schizophrenia, blindness all have neurally compromised brains, yet they are not included in this "political movement."
Who is? The folks advocating for the term "neurodiversity" generally tend to admit high-functioning autistic and ADHD folks into the club (again, even though mainstream scientists don't know how autism or ADHD work, so there's no rational basis for including those conditions and not any of the others listed above under "neurodiverse.") Neurodiversity's argument isn't that we're disabled. It's that we're NOT disabled--we're just DIFFERENT. Divergent!
Do we need a political movement for people who are different? I'm very weird, but I don't feel that people are violating my civil rights when they socially reject me for being weird. Personally, I very much feel the onus is on me to find a way to get along with others, as it is for all members of society. I wouldn't support a political movement for folks who just want to be weird and antisocial without facing social consequences. Go out there and be weird and antisocial, it's America, but you gotta face the consequences!
There's a much stronger argument for the notion that we need a political movement for disability rights. . but that's not at all how the term "neurodiversity" is being used. That's why parents of genuinely disabled children write despairing op-eds complaining about the term (https://www.bostonglobe.com/2024/05/23/opinion/profound-autism-neurodiversity/). They need help because their kids are not just weird, they're seriously impaired and sometimes not able to function, so using the airy and pseudoscientific term "neurodiversity" to imply the need for political respect and inclusion is not helpful, it's destructive.
Neurodiversity advocates are most definitely not claiming neurodiverse folks are disabled. They're saying people who act weird and strange like me should get special accommodations and be broadly accepted as we are.
Except, as I shared in the article, EVERY HUMAN BRAIN IS NEURODIVERSE. THERE IS NO NEUROTYPICAL BRAIN. Which means that everyone has flaws and quirks.
From a neural perspective, everyone is special. And it's certainly not the case that autistic brains are MORE special than all the other categories of neural quirks, like schizoaffective disorder or epilepsy.
Which leads to the source of my strongest opposition to the term: it encourages autistic people to view themselves as deserving of special treatment by others--NOT because they have a serious mental disability, but because they're different than those boring normo folks who should have to bow to our entitlement.
If you're not disabled, why are you asking for special treatment? Life's hard for everyone, and everybody has neural quirks, just most of them are different than autism. If you are disabled, then you need treatment and care, not a political movement for some kind of broad acceptance. Maybe a political movement for more treatment and research funding, sure.
Neurodiversity advocates purport to be educating society about, uh, autism. Except they don't understand how autism works. They don't know how an autistic brain is different from any other brain. They argue that autism isn't a disability, when many people with autism are disabled. These advocates make endless false and misleading claims about brains and autism while purporting to be working for our benefit.
I'm autistic and I can't hold a job or function in a group. But honestly, the burden is on me to deal with this. If I can't, a neurodiversity campaign won't help me. But medical care and treatment might.
Ogi, thank you very much for your extensive and well-considered reply.
I especially like the line "a simple lack of education in a field where even the experts are often uneducated" – this is true across the field of mental health!
Thank you for sharing the article – that certainly helps clarify your perspective. That is clearly an example of overreach, and stretches well beyond what is scientifically correct and even common sense.
I would say that, from what I've seen in the movement in the UK, it's largely focused on helping people with these conditions (especially those of us who are late-diagnosed) come to terms with the way they are, and encouraging them to not be afraid to be themselves, quirks and all. A more positive take – an extension of self-help, in essence. Which, I think, goes to show that the movement has expanded to the point where it is no longer moving in a single cohesive direction, and some of that is clearly unhelpful.
I want to focus on your point about autism not necessarily being a disability, as I think that might help us square the circle.
What is a disability? It's much easier to define a physical disability – someone with paraplegia, for example, is clearly *less able* to navigate the environment that someone who is able-bodied. But the disability is not the paraplegia; the paraplegia is an impairment, yes – but the disability arises as a result of that individual interacting with the environment. Broadly speaking, this is the social model of disability.
100 years ago, the environment was created by able-bodied humans for able-bodied humans, and so paraplegia was much more disabling. But by making accommodations for that specific impairment as a society – ramps, lifts, adjustable work surfaces etc – we can lessen its disabling qualities.
I would argue that the same applies to autism. The dark gift may confer unique benefits, yes, but – in the model you have created (which is the most compelling explanation for the condition I have seen to date), autism is defined by the inability to engage with the human supermind in an intuitive and natural way. This is the impairment – the impairment in the Why module that directs attention away from other humans. It is then the interaction of this impairment with the environment – the social environment – which causes the disability. I would argue that every autistic person is *less able* to navigate the *social* environment than a non-autistic person, just as a paraplegic is *less able* to navigate the *physical* environment than an able-bodied person.
I would extend it to my own ADHD (I'm currently in the queue for a diagnosis), which is perhaps a productivity disability, as well as social disability – the impairment causes interacting with the environment to be more difficult than for someone without that impairment.
And this is where I think the movement is useful, even if the terminology is not. Thanks to increasing awareness, I was able to self-diagnose with ADHD, and, eventually, felt empowered to raise the issue with my employer. Yes, of course, if my attention keeps wandering off during Zoom calls then it is my responsibility to refocus my attention. I do take the point – it's important not to absolve oneself of that responsibility. But, equally, by raising the issue with my employer, I am able to share the responsibility with them – not offload it, but share it – so that we are able to consider, for example, whether every call in my diary is strictly necessary. This helps me avoid placing too great a strain on my mental load and lets me focus my energy on what I'm best at. In this sense, it has the power to be less about entitlement to special treatment (though I recognise you're always going to get people who seek to abuse it in that way), and more about getting the best out of everyone – even those of us with consciousness altering conditions.
With all that said, and upon reflection, I do especially take your points about the terminology and "gatekeeping" elements of the movement – clearly using the term "physiodiversity" to describe physically disabled people would be an unhelpful narrowing of a broad range of different disabilities, and doubly so if it arbitrarily excluded people with, say, MS, as neurodiversity seems to exclude things like Alzheimer's and Parkinson's.
So perhaps this is the ultimate point – rather than using the umbrella term, we ought to be reframing the discussion in terms of how these conditions alter our ability to navigate the world around us – focusing on the strengths they imbue us with, while bringing awareness of the disabling qualities too.
Regardless, I am glad that we are able to have these conversations – thank you for engaging in the discussion!