Neurodiversity: What Does It Mean for 2015?
Neurological Diversity is a fact of life, gift and disability alike
Posted Mar 27, 2015
Neurodiversity (the word) is derived from the combination of neurology, and diversity. The fusion of the two words is smooth; they amalgamate without a tussle just as their subjects do in real life. The conjugate recognizes a reality that’s been part of humanity for all time – neurological diversity.
People exist on all sorts of continuums. Intelligence . . . eye or skin color . . . disposition . . . height and weight . . . pick a human trait and there is a range of “typical.” We describe people on the basis of what we can see, measure, or describe. Bob has a dark complexion, Sal is tall, and Jen is exceptionally bright.
Individuals who are within the accepted range are described as typical. If it’s their neurology that’s typical, they are said to be neurotypical. While there is a certain comfort to “being in the middle of the range,” and such people may be bright and capable, the odds of true exceptionality among the most typical are by definition smaller because exceptionality is less often found in the center of any range.
Outside the center, a majority of what we see is often called, “normal variation,” but at the extremes difference shades into disorder. Jim is brown, and tanned, which is common and ordinary. Ed is bright yellow, an unusual color for a human, and he’s deathly ill with jaundice. For every trait there is a broad acceptable range; being an outlier suggests some kind of pathology.
The same holds true for variations within the mind. Some of us are born autistic, dyslexic, or ADHD. Those inborn differences are the principal neurodiverse conditions. I hesitate to call them disorders, because they are not disorders for everyone. Quite a few of us function “within typical range” in many ways even with atypical neurology. Even when we acknowledge disability in ourselves, few claim the descriptor “disordered.”
Some neurodiverse were observably disabled both now and in the past – principally those of us with significant cognitive challenges and those with major language impairments. At one time that group was believed to be the majority of the neurodiverse population but now we know that’s not so. Our group is much larger.
For most of human history our apparent typicality rendered most remaining neurodiverse invisible to all but the most astute observers. If we were noticed, it was probably for our eccentricity or our achievements, not our disability. It’s only in the past two decades that the mental health profession has discovered that many aspects of cognitive gift and disability have the same foundations.
Today we acknowledge that the neurodiverse conditions affect individuals along a broad spectrum. They may appear to induce what others see as mild eccentricity, or they may produce what looks like total disability. Neurodiversity may feel different to the affected person, so a person who is judged disabled by an observer may describe herself as “perfectly fine, just different.”
Neurological diversity is also associated with a wide range of medical risks, most of which are still poorly understood. For example, autistic people are significantly more likely to have intolerances for gluten or casein. Mortality risk is greater at all adult ages. There is a correlation between more severe autistic affect and other intestinal distress. There is also a correlation between more severe autism and epilepsy. The medical complications found in people whose neurology is far from typical can be significant, and lead to great suffering. Yet there are some neurodiverse people who report few or no medical issues. On the psychiatric front, anxiety and depression are far more common among the neurodiverse.
It’s worth considering that a person whose brain is wired a little different may have an inherent ability to solve certain problems that a dozen more typical peers find intractable. They don’t solve those problems because they are smarter or better; they do so simply because they think differently. Even if they are disabled most of the time when compared to their typical peers, they are gifted at those moments of triumph. Some say that’s why neurodiverse people evolved.
Most neurodiverse people – if they think about it – have that mix. A poor ability to read other people’s body language may be counterbalanced by a keen mind for numbers. Difficulty reading the newspaper may be offset by a great gift solving pattern puzzles. The more exceptional the person’s traits, the more striking these combinations may be.
Now that we are becoming aware of neurodiversity, we see calls for action all around us. Is the philosophy of neurodiversity compatible with psychiatry? What should a college neurodiversity initiative do? What about neurodiversity in the workforce, or in the family?
Some people talk about a neurodiversity movement, but neurodiversity is not a movement. It’s a fact of life. Any movement – if there is one - is what we do in response to newfound awareness of that reality. Others suggest that embracing neurodiversity trivializes real disability associated with the neurodiverse conditions. Nothing could be farther from the truth. Neurodiversity is the recognition of many broad continuums, each with total disability on one end and exceptional functionality on the other. The concept of neurodiversity says nothing about any particular individual.
People who care for neurodiverse people who are unable to communicate for themselves often say, “that’s not enough!” They ask where the so-called gifts are, for the people in their care. Without knowledge of the individuals, I cannot answer that. But I can say with confidence that acceptance of human difference, and respect for everyone regardless of that difference should be a universal goal. As the same time we should work to find ways to help people communicate and relieve their distress. That too should be a universal goal. The fact that some people seem extremely disabled and others do not, is not a commentary on either.
How should you respond to this new knowledge? It’s easy to see what to do, if you are a moral person with a reasonable foundation of knowledge and an awareness of neurodiversity. You can compare neurodiversity to any other kind of human diversity, and ask how they are the same, and how they are different. Contrast height and autism, for example.
There is a broad range of heights that are considered typical. When you’re in the midrange, your height confers little gift or disability in most things. The closer one gets to the extremes of short or tall, the more one is optimized for specialist professions (like basketball.) The closer one is to the edge, the more one is simultaneously gifted and disadvantaged by exceptional stature. At some point, a person moves from being short or tall to “dwarfism” or “giantism” that’s attributed to disease or disorder. Suddenly the person is at risk for their exceptional build, or their build is a sign of an underlying condition that puts them at risk. Doctors are sought out; treatment options are discussed.
Even if they were born that way, individuals outside the typical ranges are often described as abnormal or sick. That raises an interesting ethical question. Are they deemed “sick” just by virtue of height? Or are they extraordinarily tall for a reason that’s attributable to a specific diagnosable disorder, as opposed to simple natural variation?
The first answer is becoming increasingly unacceptable in American society; the second answer still is and will likely remain so, as long as the condition identified continues to have recognized health risks.
Autism is much the same. A person who’s lightly touched by autism and gifted with a good intellect may have an extraordinary and capable mind. No treatment is needed, beyond perhaps counseling to help him or her learn to fit into a neurotypical-dominated world. He may be the mental equivalent of the basketball superstar. But too much of a good thing can push him over the edge, and he may then be disabled.
Neurodiverse people with medical and psychiatric challenges need and deserve help. Respect for difference and recognition of gift do not in any way preclude the need for medical treatment in other areas.
Then there is the social side. A neurodiverse person may say he is not disabled, yet behave in a way that is incompatible with the society in which he lives. What’s our duty to accommodate such “societal disability?” That’s a good question for ethicists, particularly in light of the gifts associated with neurological difference. Once again we have a societal benefit and a cost.
What else can we say about that? People of all heights and autistic affect are equally deserving of respect and accommodation by society. Autistic people and giants were freaks fifty years ago; today our more evolved society owes both a fair measure of respect.
The observation that all people deserve equal opportunity and respect is compatible with another idea: A progressive society should do its best to relieve suffering and disability among its people. Those of us who are at or beyond the edges of “normal” by any human measure may suffer for our exceptionality even as some of us bring great gifts to society. In my opinion, relief of our suffering is the price society owes for the benefits our gifts confer.
I don’t express this view as a neurodiverse person. Rather, I express it as a human, one with some traits that are “at or beyond the edge of typical.” I speak as a human who experiences suffering and would like relief, but who does his best to use his gifts to contribute to society too. The societal obligation to relieve suffering applies to all people. The neurodiverse are not unique in that regard. They are different in that we don’t currently know how to relieve much of the suffering and disability attributable to the neurodiverse conditions.
Some will say that it’s ridiculous to compare neurological variation to height variation. In my opinion, it’s a very reasonable comparison, precisely because of the seeming incongruity. Different neurology is just as ubiquitous as different height. It’s just that the public perceives height as an ordinary variation, where neurodiversity is seen as abnormal.
Here’s an interesting fact: Studies show that 20% of high school students are in some way neurodiverse. That makes neurodiversity (in total) more common that being six feet tall, or having red hair. Common as it is, it can't be all disorder and dysfunction as some would have us believe.
And when we consider disability . . . perhaps two percent of the working age American population is cognitively disabled (by the standards of the US government) by virtue of neurodiversity. That suggests most of those neurodiverse high school students do not grow into cognitively disabled adults. In total, 20% of the American population reports themselves disabled (from all causes), and 10% report themselves severely disabled. So neurodiversity is but one source among many, when it comes to disability. At the same time, it’s a significant source of exceptionality.
So what’s the takeaway for schools and business? Neurodiversity is reality, and integrating the population into schools and workplaces is wise whenever you want the maximum benefit of human intellect. It’s also more common than most people know, so efforts at accommodation make good sense.
What’s a medical person to do? First and most important – relieve and minimize suffering. Study and identify health risks faced by the neurodiverse as they age. Consider working to remediate the major medical challenges that accompany neurodiverse conditions. There is no shortage of medical research and treatment opportunities in the neurodiverse world.
Any advice for mental health professionals? Learn to help where needed, but also learn to identify and appreciate gifts. Your greatest contribution may be in helping others see how to contrinbute themselves. Learn to respect another’s normal even when it’s strange to you. Recognize that many people at one end of the normal range – for many human traits – will perceive those at the opposite end as “disabled.” Sometimes disability is universal; other times it is in the eye of the beholder, or the rules of society.
John Elder Robison is an autistic adult and advocate for people with neurological differences. He's the author of Look Me in the Eye, Be Different, Raising Cubby, and the forthcoming Switched On. He's served on the Interagency Autism Coordinating Committee of the US Dept of Health and Human Services and many other autism-related boards. He's co-founder of the TCS Auto Program (A school for teens with developmental challenges) and he’s the Neurodiversity Scholar in Residence at the College of William & Mary in Williamsburg, Virginia. The opinions expressed here are his own. There is no warranty expressed or implied. While reading this essay may give you food for thought, actually printing and eating it may make you sick.