Neurodiversity is a biological fact. It’s not a perspective, an approach, a belief, a political position, or a paradigm. That’s the neurodiversity paradigm (see below), not neurodiversity itself.
Neurodiversity is not a political or social activist movement. That’s the Neurodiversity Movement (see below), not neurodiversity itself.
Neurodiversity is not a trait that any individual possesses or can possess. When an individual or group of individuals diverges from the dominant societal standards of “normal” neurocognitive functioning, they don’t “have neurodiversity,” they’re neurodivergent (see below).NEURODIVERSITY: SOME BASIC TERMS & DEFINITIONS
Neurodiversity is the idea that all brains and connected bodyminds are diverse in how they work – no two brains or nervous systems are the sameTerminology | Critical Disability Studies Collective
“Great minds don’t always think alike.” We already understand the value of biodiversity in a rainforest. The presence of a wide variety of life forms – each with its own distinctive strengths and attributes – increases the robustness and resilience of any living community as a whole, and its ability to adapt to novel conditions. The same is true of any community of human minds, including workplaces, corporations, classrooms and society as a whole. To face the challenges of the future, we’ll need the problem-solving abilities of different types of minds working together.Steve Silberman recommends the best books on Autism
Neurodiversity: the notion that conditions like autism, dyslexia, and attention-deficit/hyperactivity disorder (ADHD) should be regarded as naturally occurring cognitive variations with distinctive strengths that have contributed to the evolution of technology and culture rather than mere checklists of deficits and dysfunctions.NeuroTribes: The Legacy of Autism and the Future of Neurodiversity
The word “neurodiversity” was coined in the 1990s by an Australian sociology grad student named Judy Singer after reading a book about the social model of disability, which proposes that disability is a product of the way society is organised, rather than by limitations imposed by a person’s condition. In a world without wheelchair ramps and accessible buildings, wheelchair users have very few choices about where they can go. But in a world that accommodates wheelchair users, they have many more choices. Neurodiversity extends the social model of disability into the realm of cognitive differences like autism, dyslexia, and ADHD. How can we make the world safer and more welcoming to people with these conditions so they can lead happier, healthier, and more autonomous lives? That’s the question that the neurodiversity movement asks.Steve Silberman recommends the best books on Autism
Discourse and education on autism, in the academic and professional realms, has thus far been dominated by what I have termed the pathology paradigm. At the root of the pathology paradigm is the assumption that there is one “right” style of human neurocognitive functioning. Variations in neurocognitive functioning that diverge substantially from socially constructed standards of “normal” – including the variations that constitute autism – are framed within this paradigm as medical pathologies, as deficits, damage, or “disorders.”
In recent years a new paradigm has begun to emerge, which I refer to as the neurodiversity paradigm. The term neurodiversity, coined in the 1990s, refers to the diversity of human minds—the variations in neurocognitive functioning that manifest within the human species. Within the neurodiversity paradigm, neurodiversity is understood to be a form of human diversity that is subject to social dynamics—including the dynamics of oppression and systemic social power inequalities—similar to those dynamics that commonly occur around other forms of human diversity such as racial diversity or diversity of gender and sexual orientation.AUTISM & THE PATHOLOGY PARADIGM
Through the lens of the neurodiversity paradigm, the pathology paradigm’s medicalized framing of autism and various other constellations of neurological, cognitive, and behavioral characteristics as “disorders” or “conditions” can be seen for what it is: a social construction rooted in cultural norms and social power inequalities, rather than a “scientifically objective” description of reality.
The choice to frame the minds, bodies, and lives of autistic people (or any other neurological minority group) in terms of pathology does not represent an inevitable and objective scientific conclusion, but is merely a cultural value judgment. Similar pathologizing frameworks have been used time and again to lend an aura of scientific legitimacy to all manner of other bigotry, and to the oppression of women, indigenous peoples, people of color, and queer people, among others. The framing of autism and other minority neurological configurations as disorders or medical conditions begins to lose its aura of scientific authority and “objectivity” when viewed in this historical context—when one remembers, for instance, that homosexuality was classified as a mental disorder in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM) well into the 1970s; or that in the Southern United States, for some years prior to the American Civil War, the desire of slaves to escape from slavery was diagnosed by some white Southern physicians as a medical “disorder” called drapetomania.AUTISM & THE PATHOLOGY PARADIGM
For me, the key significance of the “Autistic Spectrum” lies in its call for and anticipation of a politics of Neurological Diversity, or “Neurodiversity”. The “Neurologically Different” represent a new addition to the familiar political categories of class / gender / race and will augment the insights of the social model of disability. The rise of Neurodiversity takes post-modern fragmentation one step further. Just as the post-modern era sees every once too solid belief melt into air, even our most taken-for granted assumptions: that we all more or less see, feel, touch, hear, smell, and sort information, in more or less the same way, (unless visibly disabled) are being dissolved.
This word Neurodiversity did not come out of the blue, but was the culmination of my academic research and a lifetime of personal experiences of exclusion and invalidation as a person struggling in a family affected by a “hidden disability” that neither we nor society recognised for what it was. Nevertheless, we sure knew how to shield ourselves from the critical neurotypical “gaze”, and had developed plenty of strategies to try to pass for normal.NeuroDiversity: The Birth of an Idea by Judy Singer
But the term “neurological diversity” was too much of a mouthful to lend itself to sloganeering, until one day I found myself saying that what the world needed was a “Neurodiversity Movement”. I wrote about it on InLv, mentioned it in my thesis, and in my essay, Why can’t you be normal for once in your life?NeuroDiversity: The Birth of an Idea by Judy Singer
The idea of neurodiversity has inspired the creation of a rapidly growing civil rights movement based on the simple idea that the most astute interpreters of autistic behavior are autistic people themselves rather than their parents or doctors.NeuroTribes: The Legacy of Autism and the Future of Neurodiversity
Human cognitive diversity exists for a reason; our differences are the genius – and the conscience – of our species.
Dyslexic children often have better imaginations than non-dyslexics, after all, but nobody labels the “normal” children as having an “imagination disability.”
These children’s brains are organizing themselves differently, and it should go without saying that their developmental arc may therefore be different. When we interfere in the process of this organization, when we stigmatize it and test it and remediate it prematurely -– when we try to teach dyslexics to think like other children by aggressively drilling them in phonics –– Cooper says we are robbing these children of the opportunity to build organically on their many strengths rather than being treated as something broken that needs fixing.
Some simply have a different learning strategy; one that absorbs, considers, consolidates, integrates, and then suddenly blossoms fully formed
If your learning style doesn’t fit this year’s theory, you will be humiliated, remediated, scrutinized, stigmatized, tested, and ultimately diagnosed and labelled as having a mild defect in your brain.
Dyslexia is not a disease, it is an identity. An identity is not something one cures; it is the basis of community and is an element of self you aim to understand and embrace. My hope is that you and your child will learn to own dyslexia, to understand it, and ideally, to celebrate it.
This book— and your mission as a parent— is about moving the model for your child from dyslexia as disease to dyslexia as identity, an identity we can all be proud of.
Most schools and reading programs designed for remediation of dyslexia are based on the idea that dyslexia equals brokenness. Their aim is to transform the child into a person who can read without problems. But I’m here to tell you that’s just wrongheaded. I’ve learned that if you make your primary goal teaching your child to read or spell just like every other child, you’re going to decrease your child’s chances of achieving success. It’s like telling a person in a wheelchair that she needs to put in more time to learn how to walk.
I am introducing these terms to address an underlying bias in our schools: that eye reading is the only form of reading. You can help move the needle on this limited assumption by using the terms eye reading, ear reading, and finger reading yourself and explaining them to your child. We need to celebrate children’s love of ideas and quest for knowledge and give them permission to not like standard books at the same time! When we give kids opportunities to gather information and explore ideas in other ways, they will thrive.
Focusing on eye reading overlooks the real goals of education, which are learning, independent thinking, and mastering the ability to make new connections in the world of ideas.
A central theme in this book is that we must question what we are taught is the “normal” way to do things, and instead integrate multiple ways for our children to access information.
If you are a dyslexic person or the parent of a dyslexic child, I recommend that you allow technology to become your new best friend.
The key to my happiness occurred when I stopped trying to change my brain, and started changing the context around me.
One dyslexic friend of mine described his shame as “slow-drip trauma.” He felt unworthy and “not normal” every day. As an adult, he was treated for post-traumatic stress syndrome that was caused by his experiences in school.
Ninety percent of my injuries happened when I was in school and before I was talking about my dyslexia publicly. Hiding who you are can translate into self-harm. When I talk with my peers in the dyslexia movement, a majority of them had a specific plan for suicide when they were teenagers. I regularly meet dyslexic kids who cut themselves or worse when they were young. I am fine today, but the hiding left scars, figurative and literal, for many of us.
My friend Steve Walker, a very successful dyslexic entrepreneur, tells me all the time that you could not pay him enough money to go back to any type of school setting. He even says that he would sooner kill himself than go back to school. Yet in the same breath he will also say that you could not give him enough money to take away his dyslexia, because it is a part of who he is. Many times when I was in school or taking a standardized test, I rejected an accommodation because I was embarrassed and ashamed: I did not want to stand out, or I was frustrated that it would take too much effort to get permission to have my exam read aloud to me.
The majority of teachers and administrators are well-intentioned and look for ways to help your child. However, they often miss the most important point, which is that the goal is not to fix your child— your child is not broken. The goal is, instead, to play to your child’s strengths, support his weaknesses, and give him access to information.
Dyslexia is a genetic, brain-based characteristic that results in difficulty connecting the sounds of spoken language to written words. It can result in errors in reading or spelling as well as in a number of areas not considered major life activities, such as determining right and left. Individuals who are dyslexic can be highly independent and intelligent. Dyslexia is also characterized by a set of strengths that typically come with this profile in one or more of the following areas: verbal, social, narrative, spatial, kinesthetic, visual, mathematical, or musical skills. Overall, it is characterized by an increased ability to perceive broad patterns and a reduced ability to perceive fine detail in systems.
In this definition, dyslexia is characterized as a “disorder,” as opposed to a characteristic. The word disorder suggests that something is “wrong” or that the person is broken. However, disability can be defined only in a particular context, which is to say if there was no such thing as written text, there would be no disability related to reading.
Often people discuss dyslexia in terms of it having been diagnosed, but that word reinforces the notion that dyslexia is a disease, a scourge, an imperfection, and that someday we can find a cure. As I said in the introduction, there will be no cure because there is no disease! Dyslexia is a characteristic, like being male or female, or from a certain state, or a graduate of a certain university. There’s nothing less than perfect inherent in any of those descriptions, is there? You can start changing this practice in your own house today, replacing the phrase “diagnosed with dyslexia” with “identified with dyslexia.”
Turns out that, more than anything else, Kristin had one of those square-peg personalities that didn’t quite fit her world’s round— and shrinking— holes. The human brain has evolved over many thousands of years, yet only in the last hundred, a blip on that time line, have we demanded that each and every young one sit still and pay attention for seven hours a day. Kristin couldn’t. But was that really her underlying problem?
Autism isn’t an illness. It’s a different way of being human. Children with autism aren’t sick; they are progressing through developmental stages as we all do. To help them, we don’t need to change them or fix them. We need to work to understand them, and then change what we do. In other words, the best way to help a person with autism change for the better is to change ourselves— our attitudes, our behavior, and the types of support we provide.
Here is what I have learned from my years in the field and from Ros Blackburn and others: There is no such thing as autistic behavior. These are all human behaviors and human responses based on a person’s experience. When I present workshops and seminars about autism, I often tell the audience that I have never seen a person with autism do something that I haven’t seen a so-called normal person do. Of course, many people find this difficult to believe. So I make it a challenge. I ask the listeners— usually parents, teachers, and professionals— to name a behavior that is central to autism, and I predict that I have witnessed it in a typical person. Immediately people in the audience raise their hands.
“How about repeating the same phrase over and over one thousand times?”
Plenty of kids do that when they’re asking for an ice cream cone or how much longer the drive will be.
“Talking to yourself when nobody’s around?”
I do that in my car every day.
“Banging her head on the ground when she’s frustrated?”
My neighbor’s “typical” son did that when he was a toddler.
Rocking, talking to yourself, jumping up and down, flapping your arms? We all do these things. The difference, of course, is that you might not have seen it as persistently or as intensely (or at an older age) in a typical person. And if we do engage in such behavior, we generally make sure we’re not doing so in public.
Ros Blackburn says people stare when she jumps up and down and flaps her arms. They’re simply not accustomed to seeing an adult act with such abandon. She points out that it’s common to see people on TV doing just what she does, after they’ve won the lottery or a game show. “The difference,” she says, “is that I get excited more easily than you do.”
We’re all human, and these are human behaviors.
That’s the paradigm shift this book will bring: instead of classifying legitimate, functional behavior as a sign of pathology, we’ll examine it as part of a range of strategies to cope, to adapt, to communicate and deal with a world that feels overwhelming and frightening. Some of the most popular autism therapies make it their sole aim to reduce or eliminate behaviors. I’ll show how it’s better to enhance abilities, teach skills, build coping strategies, and offer supports that will help to prevent behavioral patterns of concern and naturally lead to more desirable behavior. It’s not helpful to dismiss what children do as “autistic behavior” or “aberrant behavior” or “noncompliant behavior” (a phrase used by many therapists). Instead of dismissing it, it’s better to ask: What is motivating it? What purpose does it serve? Does it actually help the person, even though it looks different?
But it could rightly be argued that the term‘disorder’ is not just descriptive. The term ‘disorder’ implies the natural order has gone awry and that the individual’s underlying cognition and neurobiology is dysfunctional is some way – even if for environ-mental reasons. But when we examine the cognition and biology of autism, arguably what we see is not evidence of dysfunction but rather evidence of difference (Lai, Lombardo, & Baron-Cohen, 2014).
But the language of disability is very different to the language of disorder. Disability requires societal support, acceptance of difference and diversity, and societal ‘reasonable adjustment’, while disorder is usually taken to require cure or treatment. These are very different frameworks.
Many in the autism community adopt the neurodiversity framework, coining the term ‘neurotypical’ to describe the majority brain. Steve Silberman’s terriﬁc book Neurotribes is a kind of manifesto for the neurodiversity movement, encouraging us to recog-nise autism as an example of diversity in the set of all possible brains, none of which is ‘normal’ and all of which are simply different. The notion of neurodiversity is highly compatible with the civil rights plea for minorities to be accepted with respect and dignity, and not be pathologised. Left-handers are an example of neurodiversity in a majority right-handed world, and left-handers used to be seen as a pathological condition that needed correction. In the same way, the concept of neurodiversity challenges whether people with autism should automatically be ‘treated’ and ‘normalised’.
Neurodiversity as a term is related to the much more familiar concept of biodiversity, and we now recognise the importance of respecting our environment, with the rich diversity of life forms that inhabit it. In many ways, the concept of neurodiversity is just the next step in this more respectful way of thinking about our planet and our communities.
Many feel that the term ‘disability’ is softer, and that the term ‘disorder’ is quite hard-hitting. Moreover, while the concepts of disability and neurodiversity are not incompatible, the concepts of disorder and neurodiversity are incompatible. This is because we all have areas of strength or difﬁculty and some cognitive proﬁles are adaptive in certain environmental niches but manifest as a disability in others. If someone is tone-deaf, that is only a disability in a situation where the person is expected to sing. Expanding on the quote attributed to Einstein, a ﬁsh will appear as having a disability if required to climb a tree. And to expand on the quote attributed to a person with autism, ‘we are fresh water ﬁsh in salt water. Put us in fresh water and we are ﬁne. Put us in salt water and we struggle to survive’.
But the case for not applying the term ‘disorder’ to autism is that, in an autism-friendly environment, the person can function not just well, but sometimes even at a higher level than a typical individual. People have made the case for including other neurodevelopmental conditions and ‘phenotypes’, such as ADHD, dyslexia, dyspraxia, dyscalculia or synaesthesia, within the framework of neurodiversity.
There are several messages from the concept of neurodiversity. First, there is no single way for a brain to be normal, as there are many ways for the brain to be wired up and reach adulthood. Second, we need more ethical, nonstigmatising language and concepts for thinking about people who are different and/or who have disabilities. Third, we need a framework that does not pathologise and focus disproportionately on what the person struggles with, and instead takes a more balanced view, to give equal attention to what the person can do. And ﬁnally, genetic or other kinds of biological variation are intrinsic to the person’s identity, their sense of self and personhood, which seen through a human rights lens, should be given equal respect alongside anyother form of diversity, such as gender.
In considering the question of how to deal with the diversity of neurological conditions, we would do well to remember H. G. Wells’s story, where “normal” is a fluid term. Nunez thinks of the blind as abnormal, but so do they of him. That each human being is biologically unique is, in fact, the norm. These biological differences are, in turn, inextricably intertwined with the different ways we have of seeing and being in the world. Eliminating this rich biological and psychological diversity in the ostensible interests of ameliorating or preventing suffering would in the end diminish our humanity. It would make us less visibly like the country of the blind, but more like them in their prejudice. Rather than working to create another set of public labels, the real value of the neurodiversity movement may be in helping us to recognize that we each face challenges and opportunities – and that a decent society is one in which we are each able to strive to make the best of what we are given.