Whether it’s a hashtag on social media, a fraught parliamentary debate, or a workplace training session, we’re hearing terms like “neurodiversity” and “neurodivergent” being used a lot more often. For those less familiar with this language, it can be tricky to understand exactly what it means, how it’s used, and why it seems to be on the increase. We took a deep dive into this topic and sought some expert advice to try to understand what’s going on.
What do we mean by “neurodiversity”?
First things first: where does the term “neurodiversity” come from, and what does it mean?
The concept is widely considered to have been coined in 1997 by Australian sociologist Judy Singer, who has previously been dubbed the “mother of neurodiversity”. While the term now covers a broad umbrella of different diagnoses, it has its origins in the autistic community.
According to the National Autistic Society, ideas around the condition we now know as autism had been evolving since the first description of what was termed “early infantile autism” by Leo Kanner in 1943. In the late 70s, largely thanks to British psychiatrist Lorna Wing, the concept of autism as a spectrum was born, encompassing those who did not fit the previous, narrow definition but still had social and communication difficulties, and behaviors that we would now recognize as characteristic of autism.
During the early years of the internet, autistic people began to find each other and share experiences online. As a reaction to a long history of being considered inferior to a supposed societal “norm”, some began to reject the word “normal” in favor of the word “neurotypical” to describe non-autistic people. The opposite of that? Neurodivergent.
Many people continue to feel comfortable using this binary distinction, and lots of non-autistic people with diagnoses such as attention deficit hyperactivity disorder (ADHD), dyslexia, and dyspraxia also describe themselves as neurodivergent.
There’s no definitive list of conditions that “qualify” someone as being neurodivergent, if that’s how they would like to identify. Most often, the umbrella of neurodiversity covers those with ADHD, autism, dyslexia, dyspraxia, dyscalculia, and Tourette’s syndrome, as well as combinations of these conditions.
For some, mental health conditions like bipolar disorder or personality disorders may also be included, although charity ADHD Aware notes that poor mental health can also be a consequence of undiagnosed neurodiversity, since these individuals may have lacked good supportive care.
There’s also a group of people who may be broadly referred to as having some kind of generalized intellectual disability, which could also be considered a form of neurodiversity.
However, there’s a growing feeling in some quarters that this language in general may not be helpful.
“A lot of people don’t use the term ‘neurodivergent’, because the etiology of that even means to deviate from the norm,” Dr Tony Lloyd, CEO of the ADHD Foundation, told IFLScience. “So a lot of people identify as ‘neurodiverse’ [and] there are some people talking about ‘neurotypes’ or ‘neurominorities’.”
When it comes to one’s identity, it’s such a personal thing that it’s not surprising there would be debate and disagreement. It is, of course, everyone’s right to identify as they choose.
But for Dr Lloyd, even the idea of there being a “neurotypical” to offset the “neurodivergent” against makes little sense: “If we share a common value around a neurodiverse paradigm, where every brain is as unique as their fingerprint and there’s seven and half billion people, then why are you drawing a dividing line at all, and what does describing somebody as ‘neurotypical’ say about them?”
“I don’t refer to my friends of color as ‘racially divergent’. I don’t refer to my LGBTQ friends as ‘sexually divergent’. Why the bloody hell should I refer to myself or any of my colleagues as ‘neurodivergent’?” Dr Lloyd added. “Personally, I prefer to call them by their names.”
Are we seeing a rise in neurodiversity?
The language around this topic is imperfect and will continue to evolve. But while we’re seeing this language much more often than we used to, does this track against an actual increase in the number of people with conditions or diagnoses that could lead to them identifying as neurodivergent?
Dr Lloyd told us, “I don’t think there’s evidence to say that we are seeing a greater prevalence.”
In other words, there aren’t more autistic people, or more people with ADHD, being born today than there were 50 or 100 years ago. The truth, while less simple, is arguably a lot more interesting.
The statistics
The data is clear: more people are being diagnosed with neurodevelopmental conditions than ever before.
In the UK, a recent report illustrated the diagnoses of ADHD have significantly risen in the last 20 years, based on a dataset from over 7 million individuals.
Well established World Health Organization data on prevalence says that one in five have one of these naturally occurring differences in human neurocognitive abilities that have been in existence since the beginning of human beings
Dr Tony Lloyd, CEO of the ADHD Foundation
Across the pond in the US, data from the Centers for Disease Control and Prevention (CDC) shows that autism diagnosis rates in children have never been higher, and the demographics are changing too – for the first time, more Black, Hispanic, and Asian or Pacific Islander children are receiving diagnoses than white children.
A widely quoted figure suggests that 15 percent of the population fall into the neurodiverse category, but Dr Lloyd told us that the true number may be even higher.
“The reality is, if you look at the metadata, one in 10, at least one in 10 are dyslexic – but it’s a spectrum. One in 20, ADHD; one in 60, autistic; one in 20, dyspraxic; one in 10, dyscalculic […] Well established World Health Organization data on prevalence says that one in five have one of these naturally occurring differences in human neurocognitive abilities that have been in existence since the beginning of human beings.”
Assessment and diagnosis
Since there’s little evidence to suggest that the prevalence of neurodiversity is increasing, it stands to reason that the statistical changes may, at least in part, be explained by an increase in diagnoses.
There are a couple of threads to this. One is that awareness and understanding of these conditions within the medical community have improved.
For a long time, autism was thought to be significantly more common in boys and men. Now, we have a better understanding of how autism presents differently in girls and women, meaning more and more female children are being identified earlier, and can access good quality support according to their needs.
It’s a similar story with ADHD, but this time with diagnoses happening in later life: “Whilst ADHD is most likely to be diagnosed in childhood, an increasing number of people are diagnosed for the first time in adulthood. We do not know exactly why this is happening, but it may be that ADHD has become better recognized and diagnosed,” said Dr Doug McKechnie, author of the recent study about the increase in ADHD in the UK, in a statement.
For many of these adults, getting a diagnosis can provide long-sought answers as to why they may have struggled with certain tasks throughout their lives.
“[The] kids who had ADHD or dyslexia [who] were never ever identified or screened underachieved, or managed to excel at least in some areas of the curriculum where they could have some successful career progression,” Dr Lloyd told IFLScience.
“You’ve now got all these adults who have struggled with different things all their lives, whether it was their reading, they thought that they were ‘stupid’, but then they think, ‘Well, I’m running a business and wealthy; how can I be stupid?’”
And it’s this that speaks to another thread to this conversation: the idea of reversing the stigma that has historically been associated with neurodiversity.
Role models and community
The more that we challenge the negative stereotypes and connotations around people who have a cognitive difference, the more likely people may be to seek assessment and help when they’re struggling.
In recent years, some high-profile people have publicly announced that they are neurodivergent or neurodiverse, sparking a broader public conversation. One such example is Danish banker and former chair of the Institute of Directors, Charlotte Valeur.
In 2020, Valeur became the first senior business leader to reveal that she is autistic. As she explained to The Telegraph at the time, she was diagnosed at age 53, and only after her son had been identified as autistic as a teen. She spoke about the value that autistic people bring to the workplace, as well as continued fears that many autistic women are slipping through the net and needlessly suffering as a result.
Valeur’s decision to go public not only sparked much-needed conversations around what has been termed the “autism job gap”, it also provided a counterpoint to other examples of, overwhelmingly male, prominent autistic people.
We’ve already seen how the early days of the internet provided a gathering place for autistic people who had always felt “othered” by a society that was not built for people like them; so too, now, are we seeing a vibrant conversation around neurodiversity taking place on social media.
As Dr Lloyd was quick to point out to us, “TikTok is not to blame for the number of people who are now getting an ADHD diagnosis.” What these platforms can do, though, is bring people together, show them they’re not alone, and help increase public awareness about what conditions like ADHD can actually look like. “Information that once existed purely within the ivory towers of academia, or medical research, or educational research,” can now be shared more widely, Dr Lloyd told us: “It’s been quite democratizing.”
What does all this mean for neurodiversity moving forward?
In Dr Lloyd’s view, what we’re starting to see is that the view of industry leaders and the wider public is shifting away from the rather narrow perspective that still prevails in many of our education systems.
“What you have now in the adult population, and particularly within industry, you’ve got more and more people standing up saying, ‘So, I’ve got ADHD, and I’m autistic. I’m dyslexic. I am not ‘stupid’. I am not ‘sick’. I’m not ‘weird’. I wasn’t ‘naughty’.’”
It’s not about pathologizing people. It’s not about giving people labels that have acronyms with a ‘D’ on them [standing for ‘disorder’]. It’s about giving people the knowledge and the skills they need to make informed choices about their lifestyles.
Dr Tony Lloyd, CEO of the ADHD Foundation
Dr Lloyd is careful not to feed into lazy stereotypes, the likes of the “Rain Man-esque” autistic savant, or the notion that everyone with a particular diagnosis is necessarily going to thrive in a particular field of study. He tells us it is true that “there are certain neurotypes that really excel in certain roles,” but that this type of pigeonholing is unhelpful. “It is about understanding that our traditional concept of intelligence – that ability, how we measure it – is being challenged, because it has implications for people’s life chances.”
Indeed, the stats around opportunities and success in school for those identified as having special educational needs make for grim reading. “In this country [the UK], seven out of 10 children who are excluded from our schools have a classification of special educational needs,” Dr Lloyd told IFLScience.
But there’s reason to be optimistic. Dr Lloyd explained to us that adults who are receiving diagnoses in later life are also now in a better position to advocate for their own children, coming up through those same systems that othered, pathologized, or misunderstood them, and slowly the needle is starting to move.
“It’s not just about, well, let’s all be wonderfully inclusive here, which is obviously a good thing. It’s also saying [that] our understanding of what it is to be human, and to belong, and to add value to the social groups and communities that you’re in […] should not be determined and devalued by the fact that you think differently.”
There will continue to be debates and discussions around the language used to describe neurodiversity, and scientific research into the underlying neurobiology and causes of autism, ADHD, dyslexia, and other cognitive differences will not stop.
What’s not up for debate, however, is that living and working in neurodiverse communities enriches us all.
“I think what’s happening now is really exciting. I think it’s positive. I think it’s very liberating for a lot of people,” says Dr Lloyd. “It’s not about pathologizing people. It’s not about giving people labels that have acronyms with a ‘D’ on them [standing for ‘disorder’]. It’s about giving people the knowledge and the skills they need to make informed choices about their lifestyles.”
To return to our original question, why are more people identifying as part of a large, neurodiverse minority? Perhaps because, for the first time, they understand themselves better, and feel free to own this identity without the threat of stigma or shaming.
As Dr Lloyd said towards the end of our conversation: “[If] everybody is different, [then] that must be because the sum is greater than the parts, that diversity of human neurocognitive capability is integral to the survival of the species and our evolution.”
“For me, the day-to-day joy of it is knowing that children and their parents are now getting a far better deal than they used to.”
The content of this article is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of qualified health providers with questions you may have regarding medical conditions
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