The New Field of Neurodiversity: Why 'Disabilities' Are Essential to the Human Ecosystem
This is an edited excerpt from Neurodiversity: Discovering the Extraordinary Gifts of Autism, ADHD, Dyslexia, and Other Brain Differences, by Thomas Armstrong, published by Da Capo Lifelong, a member of the Perseus Books Group.© 2010
Imagine for a moment that our society has been transformed into a culture of flowers. Now let’s say for the sake of argument that the psychiatrists are the roses. Visualize a gigantic sunflower coming into the rose psychiatrist’s office. The psychiatrist pulls out his diagnostic tools and in a matter of a half an hour or so has come up with a diagnosis: “You suffer from hugism. It’s a treatable condition if caught early enough, but alas, there’s not too much we can do for you at this point in your development. We do, however, have some strategies that can help you learn to cope with your disorder.” The sunflower receives the suggestions and leaves the doctor’s consulting room with its brilliant yellow and brown head hanging low on its stem.
Next on the doctor’s schedule is a tiny bluet. The rose psychiatrist gives the bluet a few diagnostic tests and a full physical examination. Then it renders its judgment: “Sorry, bluet, but you have GD, or growing disability. We think it’s genetic. However, you needn’t worry. With appropriate treatment, you can learn to live a productive and successful life in a plot of well-drained sandy loam somewhere.”
The bluet leaves the doctor’s office feeling even smaller than when it came in. Finally, a calla lily enters the consulting room and the psychiatrist needs only five minutes to determine the problem: “You have PDD, or petal deficit disorder. This can be controlled, though not cured, with a specially designed formula. In fact, my local herbicide representative has left me with some free samples if you’d like to give them a try.”
These scenarios sound silly, but they serve as a metaphor for how our culture treats neurological differences in human beings these days. Instead of celebrating the natural diversity inherent in human brains, too often we medicalize and pathologize those differences by saying, “Johnny has autism. Susie has a learning disability. Pete suffers from attention deficit hyperactivity disorder.”
Imagine if we did this with cultural distinctions (“People from Holland suffer from altitude deprivation syndrome”) or racial differences (“Eduardo has a pigmentation disorder because his skin isn’t white”). We’d be regarded as racists and nationalists. Yet, with respect to the human brain, this sort of thinking goes on all the time under the aegis of “objective” science.
The lessons we have learned about biodiversity and cultural and racial diversity need to be applied to the human brain. We need a new field of neurodiversity that regards human brains as the biological entities they are, and appreciates the vast natural differences that exist from one brain to another regarding sociability, learning, attention, mood and other important mental functions.
Instead of pretending that hidden away in a vault somewhere is a perfectly “normal” brain, to which all other brains must be compared (e.g., the rose psychiatrist’s brain), we need to admit that there is no standard brain, just as there is no standard flower, or standard cultural or racial group, and that, in fact, diversity among brains is just as wonderfully enriching as biodiversity and the diversity among cultures and races.
Over the past 60 years, we’ve witnessed a phenomenal growth in the number of new psychiatric illnesses, resulting in our disability-plagued culture. In 1952, the first edition of the Diagnostic and Statistical Manual (DSM) of the American Psychiatric Association listed 100 categories of psychiatric illness. By 2000, this number had tripled.
We have become accustomed as a culture to the idea that significant segments of the population are afflicted with neurologically based disorders such as “learning disabilities,” “attention deficit hyperactivity disorder” and “Asperger syndrome”: conditions unheard of 60 years ago. Now, even newer disabilities are being considered for the next edition of the DSM, due out in 2012, including relational disorder, sexual behavior disorders and video game addiction.
The National Institute of Mental Health (NIMH) has reported that more than one-quarter of all adults in the U.S. suffer from a diagnosable mental disorder in any given year. It seems to me that we’re moving toward a day when virtually every single individual alive may be regarded as afflicted with a neurologically based mental disorder to one degree or another.
How did we get to this place? Certainly one factor has to do with the tremendous leap in knowledge we’ve made over the past several decades regarding the human brain. Hundreds, if not thousands, of studies come out every year giving us more and more information about how the human brain works. This is revolutionizing our understanding of human mental functioning and that is a good thing. But it is also responsible for ours becoming a disability culture.
The trouble is that medical researchers generally have a disease-based perspective regarding the brain, not a view that is focused on health and well-being. Funding for brain research goes to the squeaky wheel. Studies abound, for example, about what’s wrong with the left hemisphere of the brains of dyslexics. Little research, however, exists on an area in the right hemisphere that processes loose word associations and may be the source of poetic inspiration.
The concept of neurodiversity provides a more balanced perspective. Instead of regarding traditionally pathologized populations as disabled or disordered, the emphasis in neurodiversity is placed on differences. Dyslexics often have minds that visualize clearly in three dimensions. People with ADHD have a different, more diffused, attentional style. Autistic individuals relate better to objects than to people.
This is not, as some people might suspect, merely a new form of political correctness (e.g., “serial killers are differently assertive”). Instead, research from brain science, evolutionary psychology, anthropology, sociology and the humanities demonstrates that these differences are real and deserve serious consideration.
I recognize that they also involve tremendous hardship, suffering and pain. The importance of identifying mental illness, treating it appropriately and developing the means of preventing it in early childhood cannot be overstated.
However, one important ingredient in the alleviation of this suffering is an emphasis on the positive dimensions of people who have traditionally been stigmatized as less than normal. My own definition of neurodiversity concerns itself with an exploration of seven mental disorders of neurological origin, which may represent alternative forms of natural human difference: ADHD, autism, dyslexia, mood disorders, anxiety disorders, intellectual disabilities and schizophrenia. I have come up with eight principles of neurodiversity to serve as guideposts on this journey.
– 1 – The human brain works more like an ecosystem than a machine
The primary metaphor used to describe the workings of the brain for 400 years has been the machine. The problem with this kind of approach is the human brain is not a machine; it is a biological organism. It is not hardware or software. It is wetware. And it is messy. Millions of years of evolution have created hundreds of billions of brain cells organized and connected in unbelievably complex systems of organicity. The body of a neuron, or brain cell, looks like an exotic tropical tree with numerous branches. The electric crackling of neuronal networks mimics heat lightning in a forest. The undulations of neurotransmitters moving among neurons resemble the ocean tides.
Like an ecosystem, the brain has a tremendous ability to transform itself in response to change. Pennsylvania student Christina Santhouse was 8 years old when encephalitis and the seizures it caused resulted in the right hemisphere of her brain being removed. Nevertheless, she graduated with honors from high school and is attending college. Her left hemisphere was able to take up the slack, so to speak, and function virtually normally.
To give another example, there is a form of dementia that destroys anterior (front) areas of the brain; patients with the disorder lose the ability to speak. However, it also results in posterior (back) areas of the brain being able to function with even greater strength in compensation, sometimes causing a torrent of creativity in art or music. Since the human brain is more like an ecosystem than a machine, it is particularly appropriate that we use the concept of neurodiversity, rather than a disease-based approach or a mechanistic model, to talk about individual differences in the brain.
– 2 – Human beings and human brains exist along continuums of competence
I used to drive from my home near the California coast to Yosemite National Park, 270 miles inland, to engage in weekend hiking and camping. As I traveled along, I’d see the watery coastal regions give way to the green fields of the agriculturally rich Central Valley, which would then transform themselves into the brown foothills of the Gold County. The hills, in turn, would slowly get higher and higher until I found myself winding along towering cliffs toward the magnificent Yosemite Valley itself.
What struck me on this journey was how imperceptible the changes from one region to the next could be. The green fields did not stop cold to be replaced by the brown foothills. The foothills didn’t abruptly become mountains. It all happened gradually along a continuum.
In the same way, the differences between human beings with respect to a particular quality—say, sociability—exist along a continuum. On one end of the continuum are human beings who exist in a state of virtually total social isolation. These are the most severely autistic individuals among us.
But the spectrum of autism disorders includes people with greater levels of sociability, such as those, for example, with Asperger syndrome. If we were to follow this continuum further, we might see eccentric individuals with “shadow syndromes” who do not qualify for a diagnosis of autism spectrum disorder, but nevertheless seclude themselves from their community. Some of these individuals might be diagnosed with avoidant personality disorder.
Moving further along the continuum, we might find people who can relate well to others, but are highly introverted by temperament and prefer to be alone. Gradually, we might see increasing levels of sociability, until we ultimately came to the highly sociable person (and beyond that, the overly sociable person). The point here is that people with disabilities do not exist as “islands of incompetence” totally separated from “normal” human beings. Rather they exist along continuums of competence, with “normal” behavior simply a stop along the way.
This is an important principle because it helps de-stigmatize individuals with neurologically based mental disorders. There is a tendency among human beings to take people with diagnostic labels and put them as far away from us as possible. A lot of the suffering that individuals with mental disorders go through results from this kind of prejudice. Knowing we’re all connected to each other, just like ecosystems are, means we need to have far greater tolerance for those whose neurological systems are organized differently than our own.
– 3 – Human competence is defined by the values of the culture to which you belong
Before the Civil War, a Louisiana physician named Samuel Cartwright published an article in the New Orleans Medical and Surgical Journal claiming to have discovered a new mental disorder. He called it drapetomania (from the Greek drapetes, “runaway,” and mania, “madness”). Cartwright believed that this affliction plagued the lives of runaway slaves, and said that with “proper medical advice, strictly followed, this troublesome practice that many Negroes have of running away can be almost entirely prevented.”
We see this sort of “diagnosis” as an example of blatant racism. But at the time, it was passed off as good science. More recently, individuals who received a low score on an intelligence test in the 1930s were regarded as morons, imbeciles or idiots, and until the early 1970s, homosexuality was seen as a mental disorder by the American Psychiatric Association. These are only a few examples that illustrate how perceived “mental disorders” reflect the values of a given social and historical period. We like to think our array of mental disorders is free from those kinds of value judgments, but the reality is that in 25 or 50 years, we will undoubtedly look back on today’s psychiatric diagnoses and see the bold imprint of our contemporary prejudices.
It may be too soon to know exactly what those biases will be, but I would like to suggest that one reason each of these mental conditions has been defined as abnormal by our society is because it violates one or more important social values or virtues. By specifying precisely which human behaviors represent abnormal functioning, society essentially upholds those social values that it regards as sacrosanct.
In America, for example, attention deficit hyperactivity disorder appears to violate the Protestant work ethic. Dyslexia violates our belief that every child should read. A hundred and fifty years ago, in an agrarian society, only the privileged few were expected to be literate. But with the advent of universal education came a mandate that everybody learn to read, and those who had difficulty were seen as aberrant.
– 4 – Whether you are regarded as disabled or gifted depends largely upon when and where you live
No brain exists in a social vacuum. Each brain functions in a specific cultural setting and at a particular historical period that define its level of competence. Each civilization also defines its own forms of giftedness. In ancient cultures that depended upon religious rituals for social cohesion, it might have been the schizophrenics (who heard the voices of the gods) or the obsessive compulsives (who carried out the precise rituals) who were the gifted ones. Even in today’s world, being in the right place at the right time seems to be critical in terms of defining whether you will be regarded as gifted or disabled.
One of the things I noticed in my work as a special education teacher is that kids in special ed. classes tend to be weakest in those things the schools value the most (reading, writing and math, test-taking, rule-following), and strongest in those things the schools value least (art, music, nature, street smarts, physical skill). So they end up being regarded by society as attention deficit disordered or learning disabled: ultimately defined by what they can’t do rather than by what they can do.
– 5 – Success in life is based upon adapting one’s brain to the needs of the surrounding environment
Still, it’s true that people have to live in today’s complex and fast-paced world, which places demands on them to read, be sociable, think rationally, follow rules, pass tests, have pleasant dispositions and conform in other distinctly defined ways. Consequently, an important part of being successful in the world involves adapting to the environment we are given, not one that existed thousands of years ago or one that should exist today.
Here we can borrow another metaphor from biodiversity in recognizing that all the animals and plants living in today’s world evolved from ancestors that managed, often through the luck of a random gene mutation, to adapt to changing circumstances over millions of years. In today’s world, we do not have the time to wait around for a random mutation to occur. We have to do whatever we can to fit ourselves into the surrounding environment if we want to survive.
Many of the conventional approaches used to treat these disorders are essentially of this adaptive type. They help individuals with diagnostic labels fit in as much as possible with the “neurotypicals” among us. The best example of this adaptive approach is the use of psychoactive medications. Drugs such as Ritalin, Prozac and Zyprexa have been invaluable in helping people with ADHD, depression and schizophrenia function in the real world. Certain non-drug strategies, such as behavior modification, also represent a way to help neurodiverse individuals adapt to a conventional environment. What’s often missing from this picture, however, are strategies that seek to discover surroundings for neurodiverse individuals that are compatible with their unique brains.
– 6 –Success in life depends upon modifying your surrounding environment to fit the needs of your unique brain
While it is true that individuals have to adapt to the world around them, it is also true that the world is very large, and that within this complex culture of ours, there are many “sub-cultures,” or micro-habitats, that have different requirements for living. If individuals can discover their particular “niches” within this great web of life, they may be able to find success on their own terms.
The truth is that we are all constantly changing our surroundings to build such niches for ourselves. A beaver building a dam or a spider spinning a web is a perfect example of niche construction. So is a bird building a nest or a rabbit burrowing a hole. When animals migrate, they are simply seeking favorable niches within which to flourish.
Scientists are just beginning to appreciate that niche construction may be as important to evolution as natural selection. What this can mean for neurodiverse individuals is that instead of having to adapt to static, fixed and “normal” environments, it is possible for them (and their caregivers) to alter their environments to match the needs of their unique brains. In this way, they can be more of who they really are.
A good example of niche construction for human beings is already underway. According to research by Simon BaronCohen, a psychiatrist at Cambridge University in the U.K., individuals with autism spectrum disorder tend to be systematizers rather than empathizers. While it is abundantly evident that they have difficulty interacting with people and engaging in other interpersonal tasks (empathizing), it is less well known that they often work extremely well with non-human factors such as machines, computers, schedules, maps and other systems.
The computer industry favors people working alone at their own workstations using programming languages and other systems. Thus, migrating to Silicon Valley in California would appear to be a good career move for a person with a high-functioning type of autism spectrum disorder, and an excellent example of personal niche construction.
Interestingly, it turns out that there are, in fact, a greater percentage of people with autism spectrum disorders living in and around Silicon Valley than in the general population.
– 7 – Niche construction includes career and lifestyle choices and assistive technologies tailored to the needs of a neurodiverse individual
Just as niche construction for animals consists of a wide range of strategies—nests, holes, burrows, paths, webs, dams, migration patterns and more—so niche construction for human beings is likewise diverse. Choices about lifestyle or career may be among the most critical in determining whether a person suffers as a disordered individual or finds satisfaction in an environment that recognizes his strengths.
One of the worst career choices for a person with attention deficit hyperactivity disorder, for instance, would probably be a nine-to-five desk job in a large and impersonal corporate office. Without an opportunity for movement, the person’s ADHD symptoms would stick out like a sore thumb. This would be a good example of poor niche construction.
On the other hand, if that individual were to pick a job that involved speed, novelty, change and physical activity, factors associated with the strengths of ADHD (a delivery person, for instance, or an itinerant photographer), it is likely that the symptoms would not even be regarded as problematic but would be seen as positive traits useful in the workplace.
Similarly, for a person with dyslexia who possesses spatial strengths, working with words at a computer all day long in a legal firm would likely be much more stressful and incongruent than spending time engaged with a computer graphics software program in an architect’s office.
This raises another set of strategies important in building a good niche for the neurodiverse brain: assistive technologies. These refer to a wide range of high-tech tools, including computer hardware, software and peripherals, that enable individuals with disabilities to perform tasks that they were previously unable to accomplish. The Kurzweil hand-held reader, for example, scans printed texts and transforms them electronically into the spoken word. This enables people with severe dyslexia (as well as the blind) to access a whole world of print previously inaccessible to them. For individuals with ADHD or anxiety disorders, neurofeedback devices help focus attention and facilitate deep relaxation.
– 8 – Positive niche construction directly modifies the brain, which in turn enhances its ability to adapt to the environment
In the late 1960s at the University of California, Berkeley, biological psychologist Mark Rosenzweig and neuroanatomist Marian Diamond engaged in an experiment that was pivotal to the field of neuropsychology. They placed rats in different environments (or “niches”) for an extended period of time. Some of the rats were in “enriched environments” consisting of large cages with stimulating activities such as mazes, ladders and wheels. Other rats were put into less enriching environments where they were either alone or with only one or two cage mates and no available stimulation.
After several weeks, the brains of the rats were dissected and studied. Rosenzweig and Diamond discovered that the rats in the enriched cages had more synapses, or brain connections, than those in the less stimulating cages. It turns out that the environmental experiences of the rats directly changed their brain structure.
Since that time, we’ve learned a lot about the powerful influence of environment on brain development, particularly in the early years. We know that environmental adversity (including family conflict and parent criminality) is associated with a greater risk of ADHD. We know that a young child who has an episode of depression is at greater risk of having a second episode because of the “kindling effect,” wherein the emotional trauma of the first depression sparks changes in the brain’s chemistry that make a second depressive episode more likely.
On the positive side, we know that early intervention in autism can increase a child’s chances of significantly improving social functioning, and that a warm home environment in childhood provides a buffer against depression.
These research findings provide another important reason for engaging in positive niche construction: It can literally change the brain. The brains of young children are especially “plastic” or susceptible to stimulation from the environment during the first few years of life. Thus, niche construction in the earliest years of life should be the No. 1 priority for parents and other caregivers of neurodiverse children.
Children who have a genetic vulnerability to depression or anxiety (who are emotionally sensitive), for example, need safe, warm and predictable homes and schools. Children who are prone to learning disabilities (that is, those who learn in a different way) need stimulating learning environments that help them with their phonological skills. Children with autism need opportunities for meaningful social interaction. Caregivers should regard niche construction as a form of “special handling” for the child’s brain, to help maximize its positives and minimize its negatives in both adjusting to the world and fulfilling its highest potential.
In presenting a case for the concept of neurodiversity, I am not seeking to romanticize mental illness. By focusing on the “hidden strengths” of mental disorders, I am not attempting to sidestep the damage these conditions do. I am not saying these really are not disorders, or that somehow calling them “differences” will make all the pain go away. It won’t.
But there is merit in focusing on the positives. The term neurodiversity is not a sentimental ploy to help people with mental illness and their caregivers “feel good” about these disorders. Rather, it is a powerful concept, backed by brain research, evolutionary psychology, anthropology and other fields, that can help revolutionize the way we look at mental illness.
In mounting a huge campaign to reveal the strengths of people with mental disorders, some of the prejudice that exists against mental illness might be diffused. It also seems to me therapeutically useful for people with mental disorders (and their caregivers) to focus on the positives as much as, or more than, the negatives. Seeing our own inner strengths builds our self-confidence, provides us with courage to pursue our dreams and promotes the development of specific skills that can provide deep satisfaction in life. This creates a positive feedback loop that helps counteract the vicious circle that many people with mental disorders find themselves in as a result of their disabilities.
My hope is that, like minorities who have achieved liberation around the world, people with neurodiverse brains will be helped to achieve dignity, integrity and wholeness in their lives.