Disorder or Identity? Do “neurodiverse” kids need curing—or a culture of their own?

by Juliette Guilbert

When my daughter was six years old and couldn’t spell her own first name or count five balloons on a math worksheet, my friends said soothing things.
“It will come,” they said. “She’ll be fine. She’s clearly so bright.”
A year later, when Aurora was desperately struggling in school and newly diagnosed with attention-deficit hyperactivity disorder (moderate-to-severe), dyslexia (mild-to-moderate), fine motor delays (severe), and auditory processing issues (indeterminate), some helpful types were still determined to think positive.
“You just have to find her gift,” they said. “That will build her self-esteem. Then she’ll be fine.”
“Yes, of course, all children have gifts,” I repeated dully, choking back the retort that no matter how gifted a person is at music or macramé, she has to know how to read and do long division in order to be “fine.”
Only to my closest friends did I voice my darkest, most secret thought: that in no area did my adored child show the least sign of any gift, talent, or even average degree of competence. Hopelessly uncoordinated, with “soft neurological signs,” she failed spectacularly at sports. She couldn’t read. Fine motor problems ruled out art as a path to self-esteem. She loved to listen to music, but coordination and attention problems got in the way of learning to make it. She couldn’t clap a simple 4/4 rhythm, and her piano teacher fired her for being hyper and unfocused. She couldn’t do puzzles, build with blocks, color inside the lines, or play a board game. She was being bullied because she couldn’t read other kids’ nonverbal social cues. And getting her ready for school in the morning was a tear-stained, operatic drama.
But we weren’t yet ready to embrace a medical diagnosis (ADHD was the invention of drug-pushing Big Pharma, right?). So we put her in a mellow hippie school where nobody gave her demerits when she couldn’t sit still, and waited for the gifts to emerge. We tried countless alternative remedies and maintained our nonconformist skepticism about the status of ADHD as a legitimate disability. But I think the real reason behind our skepticism, other than native cussedness, was that to call our child disabled would be to condemn her to a lifetime of hardship. If her situation were a kind of temporary disease state, correctable if she consumed enough fish oil, or jumped up and down on a trampoline while reciting the alphabet, or ate not one molecule of artificial color or flavor, she might get better. She might become merely quirky or exuberant, not impaired.
But before long, it became pretty clear that the problem was not going to simply fade away. Toward the end of her first-grade year, we were working on math homework together at the dining room table. The problem was 0 + 1. Aurora couldn’t produce the answer on her own, so I got out a Lego.
“Now, sweetie,” I said. “How many Legos are there on the table right now?”
“Zero,” she said.
“Okay, good.” I put the Lego on the table in front of her. “Now how many Legos are on the table?”
“Zero!” she crowed happily, looking at a spot on the wall somewhere above my head.
There was a time when I might have screamed at her to snap out of it, to pay attention and get with the program—not out of anger, but out of fear. Or at least the anger that comes from fear. But suddenly, I was struck by the realization that she really, truly couldn’t help it. She could not focus well enough even to understand what she was being asked to do. And even if she one day developed a knack for Model U.N. or playing the accordion, this child was going to need help—serious help, years of help, thousands of dollars’ worth of help—to learn the basic math and reading skills that would allow her to function as an adult. Sitting there at the dining room table with a seven-year-old who, despite documented high intelligence, could not successfully count one Lego, I accepted the label: My kid had a disability.

I got down to business, pursuing treatments and therapies aimed at mitigating that disability. I told her teachers she was ADHD and had dyslexia and possibly other learning disabilities (as if they were surprised). And when she started asking awkward questions like “Mom, am I dumb?” I answered honestly: “No, you have a disability that makes some things harder for you to do. Just like how having cerebral palsy made it harder for your friend Grace to walk.”
It was the label that got Aurora what she needed in order to learn to read, count Legos, sit still long enough to draw a picture, and refrain from spitting on her desk and running up to horrified children at recess to give them great big hugs. And it was the label—not the vague promise of unnamed “gifts”—that allowed her to salvage something of her self-esteem when she was struggling to keep up with the lowest reading group, the lowest math group, and unable to kick a ball or make sense of her classmates’ social interactions. I still expected her to try her best, but when she simply couldn’t hack it, she believed me when I told her it was because she was disabled, not stupid, lazy, naughty, or weird.
By this past fall, the start of third grade—after nearly two years of living with the label—she was doing somewhat better. During the course of second grade, an intensive program for dyslexics got her reading. She was making friends, participating in class, getting excited about Mesopotamia and optical illusions. But there were still major issues with spelling, math, and handwriting. Her confidence was better, but school and homework still created a good deal of anxiety. I geared up for another round of neuropsych testing, hired a math tutor, met with teachers, drilled with flash cards. Helping Aurora was kind of like having a second job, but we were making progress and I felt, if not wholly optimistic, at least not entirely despairing. The idea of “gifts” had been pushed out of my mind, but at least now she could spell her name—first, last, and (sometimes) middle.
Then I happened to speak to an old friend, Martin, whose son Sam had recently been diagnosed with Asperger’s syndrome, a disorder on the milder end of the autism “spectrum.” (Names have been changed.) Martin’s experience was similar to mine: wondering what was wrong through the preschool years; inconclusive tests and failed hypotheses; and then an official diagnosis that gave rise to a plan of action. Martin started Sam on an intensive program of behavioral therapy called Applied Behavior Analysis, or ABA, aimed at improving Sam’s social skills and—Martin hoped—helping him overcome the cognitive deficits that had already become apparent. Sam was technically the best reader in his first-grade class—hyperlexia is a common Asperger’s trait—but he was unable to comprehend the plot of a simple story or Bugs Bunny cartoon. ABA is a widely used approach, based on the behaviorist school of psychology, that many parents of autistics credit with bringing about great improvements in their children’s ability to function more normally. ABA therapists break down desired “behaviors” into small steps and teach them by means of prompting and positive reinforcement. A typical program requires twenty to forty hours a week of therapy; Sam will do eighty hours a month for at least two years.
“But some people think you shouldn’t do this sort of thing,” Martin said.
“Really?” I was astonished. “Who?”
“There’s a movement in autism circles that would say we’re just trying to change him for our own selfish reasons,” he said. “That you shouldn’t treat autism, that it’s an identity, not a disorder, and you should just accept it and love the kid for who he is.”
I went online and soon found that he was right. And it isn’t just autism: An identity politics had also been growing up around dyslexia, ADHD, and other developmental and learning disabilities, springboarding off the disability rights and deaf culture movements. In the same way that many deaf community activists reject the notion of deafness as a deficit and speak against cochlear implants on the grounds that they enact “cultural genocide” on deaf culture, the “neurodiversity” movement denies that cognitive differences are disabilities, revisioning them as part of the grand continuum of human neurological variation, with strengths as well as deficits (in other words, gifts). In its more radical manifestation, the movement is steeped in the rhetoric of identity politics, staking out territories of “autistic culture” and “LD pride,” poking fun at “neurotypicals” or “NTs” (a term coined in the autism rights community to describe non-autistics). These new neurodiversity radicals make the bold claim that rather than trying to “fix” them, society should simply accept (and accommodate) them.
It was a shock to discover a subculture intent not on denying my child’s impairment, as I had initially done, but on celebrating it, redefining it as a benign “difference,” analogous to being an ethnic or sexual minority. It was a shock because my child (and Martin’s child) seemed so clearly impaired. It was a shock because not so long ago, people who couldn’t learn the usual things in the usual ways were subjected not to therapy and medication but to humiliation and abuse.
My father, who was born in 1930, had a very similar cognitive profile to Aurora’s. He had terrible trouble in school and was always on the verge of being held back. Like Aurora, he didn’t learn to tie his shoes until he was seven—and in the 1930s, they did not have Velcro. His teachers knew he was bright, so they called him lazy. His report cards came home stamped “Shows little effort” so frequently that his parents nicknamed him “Little Effort.” He dropped out of high school, joined the Army, and didn’t graduate from college until he was forty. (He then went on to become an aeronautical engineer and worked on the first lunar landing and Space Shuttle projects, as I am fond of telling my currently math-challenged daughter.) Compared to “Little Effort,” calling Aurora disabled seemed like a step toward a more humane, compassionate understanding of cognitive difference.
But now, after just a couple of decades of the medical model of learning problems, a major backlash seemed to have developed. That backlash demonizes “NT” parents and scientists as destroyers of identity and self-esteem. Mainstream autism advocates and parents trying to help their kids are labeled with their own disparaging moniker: curebies.
I wondered if one day Aurora would vilify me as a “curebie” who ruined her childhood with treatments aimed at altering her very being, and who saddled her with a soul-destroying sense of her own defectiveness. At the very least, it seemed that the neurodiversity movement could make excellent fodder for adolescent rebellion. But I had to ask myself: Did they have a point? I had practically killed myself for three years trying to help my daughter by fixing her. Was I going about this all wrong?

The special-needs parenting section at the bookstore is full of titles like The Gift of Dyslexia, The Gift of ADHD, and Autism and the God Connection—books that argue that these conditions are not pathologies, but neurological variations that produce people who are more creative, more intuitive, more visual, more able to “think outside the box,” or more spiritual. Many argue that conventional education and the medical management of these conditions can be more devastating than the conditions themselves, blunting the gifts and producing a self-fulfilling prophecy of misbehavior and failure.
They often trot out famous geniuses supposedly afflicted with one or more of these conditions: Einstein is claimed by autism, dyslexia, and ADHD. Other (speculative) favorites include Thomas Edison (ADHD), Benjamin Franklin (ADHD), Thomas Jefferson (Asperger’s), and Steven Spielberg (Asperger’s). Some New Agers claim that ADHD and autistic kids have simply evolved to a higher spiritual plane and possess psychic powers; UFO enthusiasts speculate that they are alien hybrids. To read some of these books, you would think the inability to learn to read, add, and subtract were the greatest thing that ever happened to my kid.
Dr. Edward Hallowell was one of the originators of the notion that ADHD may not be entirely a bad thing. A psychiatrist in Sudbury, Massachusetts, and New York City specializing in the condition, he had a major role in introducing it to the popular consciousness, coauthoring several books on it (including Driven to Distraction, 1994) and founding the Hallowell Center, a chain of clinics that use a “strengths-based” approach to diagnosing and treating ADHD and LD.
While Hallowell doesn’t deny that ADHD can cause a person some pretty major problems—he makes his living treating the condition as a disorder—he also has one foot firmly in the “gifts” camp. His website states, “We see ADD, dyslexia, and other learning issues as potential gifts that can be difficult to unwrap.” I decided it was time to open my mind to this concept. After all, the idea of ADHD/LD as entirely a disability had helped Aurora, but we weren’t exactly home free. So I called up Hallowell to see if I could get some clarification on what her gifts might be, and how to unwrap them.
When he tells a young patient he has ADHD, Hallowell told me, he doesn’t present it as a sickness or a defect. “I tell them I have great news, that they have a Ferrari brain,” he said. “I tell them that they are going to win a lot of races, but that the one problem is that they have Chevrolet brakes. And I tell them that I am a brake specialist. They leave my office saying, ‘I’ve got a gift, this incredible brain.’ ”
Hallowell acknowledged that the Ferrari metaphor may not stand up in the court of scientific evidence. But he assured me that it’s not just empty, self esteem-boosting rhetoric. “I don’t bullshit kids,” he said. “I believe it with all my heart and soul. A lot of experts in the field quibble that there is no data to prove that ADHD people are more creative. I say, fine, go count your beans. That’s not my job. The point is not can we prove this, but that we will give these people much better treatment if we approach them this way. I have been treating ADD for twenty-five years, and my clinical experience is worth something, and I happen to believe that people with ADD are more creative, intuitive and enthusiastic.”
But is it a disability or a “difference”? Hallowell himself has both ADHD and dyslexia, and pointed out that while he has faced hardship because of these conditions and remains a slow reader, he makes his living writing books. “I don’t like this either/or way of looking at it,” he said. “I say it’s a way of being that has advantages and disadvantages. The prisons are full of people with untreated ADD. Obviously if it’s not treated right it’s a curse. But if it’s handled right you end up like David Neeleman, the CEO of JetBlue airlines.” Neeleman likes to say that if he could take a “magic pill” to get rid of his ADHD, he wouldn’t do it: He credits the disorder with giving him the originality it took to invent the paperless airplane ticket.
A skeptical bean counter might say that there’s little reason to believe that Neeleman’s ADHD and his creativity are necessarily linked. Joel Nigg, a professor of psychology at Michigan State University and the author of What Causes ADHD? Understanding What Goes Wrong and Why, is not dismissive of the notion that those diagnosed with ADHD and autism might have gifts, but he said that most studies have failed to find any.
“The most typical thing people want to say related to ADHD is creativity,” Nigg said. “There is very little literature on that, and there really isn’t any good evidence of it. There’s lots of speculation. A study came out this year that found a little more creativity in the ADHD group, but the kids couldn’t apply it. They could recognize more solutions but didn’t have the mental control to apply those solutions.”
Indeed, where evidence of a link between creativity and ADHD symptoms has been found, that relationship has been complex. A 2006 study by researchers at New Zealand’s University of Canterbury found that forty percent of a sample of highly creative children displayed mild ADHD symptoms—a much higher percentage than would be found in the general population—but none met the full criteria for ADHD. According to questionnaires filled out by their parents and teachers, none was impaired by their symptoms. (Significant impairment is one of the official criteria for diagnosing ADHD.) It seems quite possible that elevated inattentiveness may be a characteristic of some restlessly creative minds but that ADHD as a pathology is something else altogether.
Similar research aims to pin down the cognitive strengths of autistics. In 2007, Laurent Mottron, a professor of psychiatry at the University of Montreal, led a group of American and Canadian researchers who gave autistic and normal children two of the most common IQ tests: the Wechsler scales, which is heavily language-based, and Raven’s Progressive Matrices, which asks subjects to complete complex visual patterns in a wholly nonverbal format. The non-autistic kids had similar scores on both tests. But while no autistic child scored in the “high intelligence” range of Wechsler, one-third did on Raven’s. Similarly, one-third of autistics scored in the mentally retarded range on Wechsler, but only one in twenty did on Raven’s. The researchers were able to reproduce the results with a group of autistic and normal adults. The implications are startling: At least some autistic people previously considered intellectually deficient may, in fact, be in the normal or even gifted range when it comes to abilities such as memory and abstract reasoning. One autistic subject who was deemed mentally retarded by the Wechsler scored in the 94 th percentile on Raven’s.

Mottron has credited Michelle Dawson, an autistic colleague with a high school education, with bringing about a paradigm shift in his research. A former postal worker, Dawson began working with Mottron as a research partner after the two met on a film project about autism; he was astonished to find that she could present cogent (and scathing) critiques of his research methodology and conclusions.
Dawson has become a controversial figure in mainstream autism circles because of her anti-ABA activism. For her, evidence of autistics’ cognitive strengths fuels a fierce animus against any therapy aimed at making them less autistic. She has challenged ABA on ethical as well as scientific grounds. In 2006, she submitted testimony to the Supreme Court of Canada in a lawsuit brought by parents intent on forcing the government to pay for their children’s therapy. Dawson argued that since children cannot consent to behavioral therapy, a rigorous ethical review of ABA’s goals and practices—with input from autistics as well as scientists, ethicists, and legal scholars—must be undertaken before the Canadian government can endorse it. When it ruled against the families, the court cited Dawson’s testimony.
To be sure, ABA does have something of a checkered past. Its originator, clinical psychologist Ole Ivar Lovaas, originally used “aversives”—shouting, striking, or electric shock—in tandem with positive reinforcement to produce desired behavior in autistic children. Aversives have been largely abandoned, but later researchers have found that Lovaas’ landmark 1987 study on ABA, which claimed that a significant proportion of his autistic subjects had become “indistinguishable” from their non-autistic peers, overstated the technique’s efficacy. (Nonetheless, a 2005 study found ABA more effective than other approaches for improving autistic children’s cognitive, language, and social skills.)
Anti-ABA activists like Dawson contend that a successful ABA graduate has simply been taught to suppress his natural modes of learning about and interacting with the world—behaviors such as self-stimulation, or “stimming” (rocking, flapping, etc.), and obsessive interest in arcane topics, seemingly pointless actions to neurotypicals. “While this lacks a bit of nuance, Raven can be said to measure the ability of a person to learn,” Dawson told me in an e-mail. “Clearly, as evidenced by our study and many others, autistics can learn well, and sometimes exceptionally, in ways not only distant from the practices in A.B.A. programs but actively discouraged or extinguished [in them].”
While Dawson’s ability to master scientific discourse would seem to be further proof of her claims about autistic intelligence, her intellectual achievements have also caused parents of autistics to question her autistic status—and her right to make pronouncements about their severely impaired children. These parents argue that acceptance and accommodation may make sense for high-functioning autistics with largely social problems, but not for kids who can’t use the toilet, who injure themselves or others, or who may not be able to live independently as adults.
Dawson’s supporters retort that it can be difficult to determine a person’s degree of autistic impairment by reading his or her written communications. Three (unnamed) site administrators at autistics.org, a hub of radical autistic self-advocacy, collectively posted a response to Dawson’s critics in which they asserted that (despite their ability to write coherent prose and maintain a website) all three have been called things like “low-functioning,” “mentally retarded,” or “unsalveagable” by professionals. All have communicative speech problems, none is fully toilet-trained, and all are visibly autistic. “We flap, finger-flick, rock, twist, rub, clap, bounce, squeal, hum, scream, hiss, and tic,” they wrote. “Two of us don’t even believe in the distinction between high- and low-functioning, and neither does Michelle Dawson.”
Even if you accept that low-functioning autistics may have special cognitive powers, or ADDers more creativity, it’s reasonable to argue that they may still need a lot of help—perhaps even medication or behaviorism—to be able to use their skills and make their way in the world. Parents charge that while the neurodiversity movement is ready with criticisms of available therapies, it offers little in the way of practical solutions to help them and their children cope with life.

There remains the compelling insight that even the most impaired-seeming person may have abilities, perceptions, and feelings “normal” people can scarcely imagine. Indeed, through the use of computer technology, nonverbal, low-functioning autistics who might have been institutionalized in an earlier era have found the means to convey their awareness and intelligence to the world. One, Amanda Baggs, became an Internet sensation last year after posting a short film on YouTube titled “In My Language,” which depicts her routine stimming behavior, accompanied by her own written commentary voiced by a computer. Although Baggs cannot speak, her typed communication reveals her to be an aware, intelligent, and witty person. She later guest-blogged for Anderson Cooper.
For Baggs and others like her, it’s all about the environment: When she has access to a keyboard, she’s viewed as intelligent. Without one, she appears to be mentally retarded. She does not make eye contact with others but has said that when she is “talking” (via computer) to her autistic friends, she feels “totally normal.”
According to some ADHD iconoclasts, a different social or educational environment could provide a similar sense of normality for ADDers. In addition, in some environments, a behavior that appears to be a deficit (extreme impulsiveness, for instance) could be an asset. In his book The Edison Gene: ADHD and the Gift of the Hunter Child (2003), Thom Hartmann, the liberal talk show host and author, argues that ADHD represents the genetic traces of hunter-gatherer civilization, left over in the human genome after the transition to agricultural civilization. He came up with the idea, he writes, as a metaphor for understanding the way ADHD minds work: Unlike the steady, methodical, team-playing “farmers” (neurotypicals), “hunters” are independent, visual, tireless, impulsive and risk-taking, and constantly “scanning” their surroundings for prey and enemies.
With the discovery of a specific gene variation linked to a large proportion of ADHD cases, though, the metaphor took on scientific substance: Hartmann contends that there is now genetic evidence that ADHD could be an adaptive (evolutionarily good) rather than a maladaptive trait. He cites a 2002 study by researchers at the University of California-Irvine that found that the allele, which makes brain receptors for dopamine, arose as a spontaneous mutation between 10,000 and 40,000 years ago. This mutation may have provided ancient hunter-gatherers with an evolutionary advantage that subjected it to positive selection—an advantage that may have persisted, in certain circumstances, even to the present day, thus accounting for its continued frequency. (One recent study found that the prevalence of ADHD among eight- to fifteen-year-olds was 8.7 percent.)
An appealing idea—except for one small problem: When I read the book, Hartmann’s list of “hunter” traits seemed to have little to do with the reality of my ADHD child. More than one mainstream ADHD expert has joked that he would not want to go hunting with any of his patients, and I was inclined to agree with them. Aurora’s inattentiveness and hyperactivity has caused me minor physical injury on more than one occasion (and that’s without putting a spear in her hands). She might be constantly scanning her environment, but she also has poor working memory and terrible motor skills (common in people with ADHD), traits that would make her easy prey for a saber-toothed tiger. And while, as Hartmann notes, some people with ADHD have the ability to “hyperfocus” in certain highly stimulating situations, such as a mastodon hunt, my daughter does not appear to possess this potentially useful trait.
On the other hand, I could tell from reading the book that Hartmann was a ferociously intelligent Renaissance man (he’s also written books on global warming, Thomas Jefferson, and the war on the middle class), and I liked the idea of a smart, iconoclastic layman challenging the conventional scientific wisdom on ADHD. I also appreciated his humane attitude toward children with “issues,” born of much personal experience: He has a son with ADHD, and in fact has it himself and failed spectacularly in a conventional school environment. The book’s practical recommendations are sensible enough—among them, little or no television, plenty of play and exercise, essential fatty acids, a school environment tolerant of and tailored to your child’s special needs.
The only problem was that I’d already observed most of them since Aurora was a baby, to little avail. One recommendation from Hartmann I hadn’t yet tried, though, was to provide her with a positive-spin narrative of her condition.
“Instead of thinking of an Edison gene child as having a genetic mental problem or ‘disorder,’ ” he writes, “tell her—and yourself—that she is the descendant of the explorers who moved across the world discovering and populating new lands and of people like Thomas Edison, who invented all sorts of ways to make life better, healthier, or easier. … Point out the positives of his genetic trait: energy, enthusiasm, creativity, the ability to think on your feet, fearlessness.” By pointing out my child’s kinship with geniuses like Edison and Ben Franklin, both of whom were expelled from grammar school, Hartmann contends, I could give her the self-confidence necessary to keep her going in the face of adversity. I found Hartmann’s formulation a bit more suited to my child than Hallowell’s “Ferrari brain,” which seems more appropriate for the classic “acts as if driven by a motor” ADHD boy.
Before I laid this fable on my child, though, I wanted to unpack it a bit. After all, for every Edison or Franklin who got kicked out of school for being a pain in the ass and went on to achieve greatness, there were probably thousands of otherwise bright people who ended up drunken ne’er-do-wells. And if we couldn’t yet be sure that ADHD did come with benefits like creativity and fearlessness, wouldn’t comparing my child to Edison be a risky falsehood, setting her up with expectations of greatness that might never be realized?
I put the question to Hartmann. He agreed that not all hunters turn out to be geniuses. “And if Edison and Franklin had been poor or African-American, their outcomes would have been very different,” he said. Still, he maintained that although firm scientific proof for the Edison/hunter gene story hadn’t yet been found, it was still worth telling my kid.
“It is absolutely irrefutable that one of the major variables that predicts adult success is the level of self-esteem held by that person as a child,” he asserted. “And I believe that these exceptional stories, the Franklins and Edisons, are useful metaphors for explaining to our children their differences, even if those children are never going to be Franklins or Einsteins, if it enhances their self-esteem, even if it’s not scientifically justifiable.”
Fair enough. We also tell them that their finger paintings are exquisite. So I left out the hunter bit, but I told Aurora all about the Franklins and Einsteins and how they had a hard time in school, and how they went on to become great people (it would have been nice to have some women in the mix, but oh well). She seemed pretty interested, and what could it hurt? It did seem a useful way to underscore the fact that even if ADHD weren’t a “gift,” it didn’t make you stupid.
As for the science, though, the jury is still out. Some theories about why mental and cognitive disorders (from schizophrenia to ADHD) persist in the human genome do speculate that they may once have been adaptive traits. Joel Nigg described a possible scenario that would encompass both the idea of ADHD as beneficial and ADHD as harmful, drawing a comparison to other genetic disorders like sickle-cell disease. If you have one sickle-cell gene—if you’re a carrier—you get resistance to malaria along with it, an adaptive trait. If you have two genes, though, you are sick: maladaptive. It’s possible that some genetically linked cognitive disorders work in a similar fashion. Some researchers have even suggested that the recent rise in autism diagnoses could be due to an increase in people with mild autism-like traits—e.g., two brilliant, nerdy computer programmers—meeting and having children.
In any case, the hunter theory may not hold up under the glare of Aurora’s developing awareness of her struggles. While a third-grader who still believes in Santa Claus might take comfort from such a story, somehow I don’t think I’ll get as much mileage out of it as she gets older, especially if she continues to flounder in school or at some point she crashes and burns, as happens to so many ADHD kids when they hit middle school.

If Hartmann is right, kids like Aurora would have been considered normal in the Pleistocene epoch. But the question remains: Where do these children belong in the modern world? If we can’t—or shouldn’t—“fix” them, what about fixing that world? Perhaps, rather than trying to cure them, we should be placing them in environments that allow them better access to their gifts.
That’s precisely what many neurodiversity radicals are arguing for. The founder of aspergia.com, a somewhat mysterious figure known only as “Edan,” published an essay on the site called “The Aspergian Mythos and Ethos.” The essay imagines and describes a lost civilization of Aspergia, whose citizens were distinguished by their solitary, passionate devotion to the cultivation of their Aspie-style special interests (called “gifts”). Other autistic pride advocates would take this sort of mythos creation one step further. On aspiesforfreedom.com, there is a discussion thread devoted to founding a literal Aspergia, an all-autistic island community that would serve as “a place to escape from NT society for a while or permanently.”
But while that island oasis remains in the drawing-board stage, desperate parents have founded what, for now, best approximates Aspergia and its ADHD equivalent: special schools intended to celebrate and work with, rather than quash, special-needs kids’ cognitive quirks, and along the way to give them a sense of belonging to a community of others like them.
The Hunter School, in Rumney, New Hampshire, was co-founded by Thom Hartmann for ADHD kids. The kindergarten-to-eighth-grade curriculum is based on the principles outlined in his book: that given the right educational environment, kids with ADHD can feel normal and even excel. According to Nicole Bushaw, the Hunter School’s lead teacher, the school’s student-teacher ratio of about five to one allows for learning plans tailored to the needs of kids with ADHD. The environment is multisensory, with lots of hands-on instruction and bouncy exercise balls for fidgety kids to sit on. There is an emphasis on structure but also an effort to find unconventional modes of instruction to get through to hard-to-teach kids. “If we’re doing spelling, instead of having the kids sit inside and write the words three times each, we might let them go outside and yell the letters,” Bushaw said. “They’re hearing it, speaking it, and also getting that excess energy out.”
I asked Bushaw if she thought ADHD was a disability. She said she didn’t consider it one, and that in her experience, kids with ADHD had consistent strengths. “They are very creative, because they’re already thinking outside that box. They’ll think of things before I think of them. When you can get them into something that they’re really passionate about, they’ll really make it grow, and they flourish in that area.”
At the Open School for Autism, a new school for autistic children set to open soon in upstate New York, the ideals of self-advocacy shape the curriculum. Its co-founder, Valerie Paradiz, found help in her struggle to understand her Aspie son at Autreat, a yearly “by-us-for-us” conference organized by Autism Network International, the original autism self-advocacy group. According to its website, the conference focuses on “positive living with autism, NOT on causes, cures, or ways to make us more normal”; participants wear color-coded badges indicating whether or not they are open to social interaction.
“The basic educational philosophy at the Open School is that autism is a way of life,” Paradiz said. “To begin with, we have a smaller class size, a school environment that’s not overstimulating, with lots of natural light and no fluorescent lights. We have a very structured setting, so that kids know what the day is like, and things are visually posted and clear. We have a sensory curriculum, where you’re actually learning about your own differences; it’s part of the self-advocacy curriculum I’ve developed. And there’s actually discussion about stimming, eye contact, and behaviors where you kind of make a choice as a self-advocate.”
The program encourages discussion of such behaviors—behaviors that often make the neurotypical world uncomfortable—to help students determine when they are acceptable. (This can vary according to the individual autistic person’s goals and comfort level.) The students also do research projects on autistic culture and history, Paradiz says, which gives them a sense of self-worth.
Paradiz claims that mainstreaming is furthered by a period of separatism and insulation from the NT world’s condemning gaze. “When you bring kids on the spectrum together for the first time, if they have never had meaningful, authentic friendships before, they are very likely to have them with fellow Aspies,” she said. “And that experience is so life-altering that they begin to actually grow together and move beyond those relationships.”
But neither Paradiz nor Bushaw advocates just leaving these kids’ deficits alone—and it is here they part company with the Aspergia-type radicals. Unlike those who would want to break away from mainstream culture, these schools work to give students the skills to survive in the NT world. Despite the bad press that ABA-style programs have received in some quarters, Paradiz said she is not opposed to them—her son benefited from one as a young child—if they are administered with kindness and respect for the individual. A cornerstone of the Hunter program—and probably the element that allows it to take on kids with extreme behavioral issues, something most private schools are not equipped to do—is the structured behavior plan that all students must follow.
“They each have eighteen things they work on every half hour, like gaining attention appropriately or staying in their assigned area,” Bushaw said. “We put in a point if they’ve made it, or leave it blank if they have not met the goal.” Points are added up for rewards, such as shopping in the student store or going on outings. As a system grounded in behaviorism, this program would appear to have more in common with ABA than with hunting mastodons on the frozen tundra.
I think I can safely speak for nearly all parents of special-needs children when I say that I applaud any effort to place such children in accepting environments. But once again—as with Dawson’s critique of ABA—I have to wonder where low-functioning kids fit in. As a movement, neurodiversity’s parallels with other identity politics tend to break down in the face of severe impairment—sometimes in ways that can seem distressingly callous.
In a seminal 1993 essay titled “Don’t Mourn for Us,” Jim Sinclair, a founder of Autism Network International and Autreat, castigates parents of autistics who experience their children’s autism as tragedy. “When parents say, ‘I wish my child did not have autism,’ what they’re really saying is, ‘I wish the autistic child I have did not exist, and I had a different (non-autistic) child,” he writes.
Unsurprisingly, while some parents of autistic children have embraced Sinclair’s view, many react to this manifesto—and to other activists’ equating efforts to cure autism with previous generations’ efforts to cure homosexuality or even left-handedness—with outrage. It makes sense to say that for a gay child to flourish, all that really needs to happen is societal change. But with cognitive disabilities, even strengths-based programs such as the Hunter School and the Open School necessarily contain elements aimed at changing the child. And while autistic adults may know what it’s like to be autistic, they may not have had the experience of providing round-the-clock care to a severely autistic child, which is exhausting and stressful in the extreme.
My friend Martin is deeply sympathetic to the notion that society should make a place for autistics. He and his wife have already made the decision to transfer Sam to a school that is more accepting of his differences, and they encourage his special interests by incorporating them into family outings and vacations. They hope that by the time he grows up, more colleges and businesses will be providing services and support for Aspies, and that society on the whole will be more tolerant of them. But as accepting as he is of his son’s difference, Martin believes that Sam will need a good deal of intervention in order to survive out in the world.
“Asperger’s has strengths that come along with it, like a good memory and a passion for certain topics,” Martin said. “But the tradeoff is a lot of qualities that would make anyone’s life difficult, like knowing whether someone is trustworthy or not. Most kids, by the second grade, already have a kind of radar for creepy people, being able to tell if someone is kidding, if someone wants something from you. These kids just don’t have that, and it makes them really vulnerable. It also makes kids very lonely. Just because they don’t socialize well, and in some ways don’t feel the need to socialize as much as other kids do, that doesn’t mean that many of them don’t end up lonely as adults.”
Talking with Martin, it didn’t appear to me that he was mourning the loss of a “normal” child that never existed. He was mourning, in advance, the hardship that he foresees in his actual child’s future. I recognized this, because I do it myself.

While parents with cognitively disabled kids may view the neurodiversity movement with trepidation, it continues to develop, expanding to include disabilities other than autism, drawing rhetoric from the discourse of disability rights, queer theory, and deaf culture. It’s possible that by the time Aurora and Sam are adults, they will be encouraged to consider themselves “cognitive minorities,” with a politics and culture all their own.
Jonathan Mooney is working to create a political umbrella that would cover Sam, Aurora, and other neurological oddballs, and to develop a kind of politics of eccentricity around it. After flunking out of sixth grade because of severe dyslexia and attention problems (he did not learn to read until he was twelve), Mooney went on to become an Ivy League graduate and a national finalist for a Rhodes Scholarship. When he was twenty-three, he co-wrote Learning Outside the Lines, a book on alternative study skills for LD kids. He then co-founded Project Eye to Eye, a mentoring program that pairs LD kids with LD adults, and wrote another book, The Short Bus, which chronicles his road trip across the country in a special-ed bus meeting other “abnormal” people, including a young woman with Down syndrome, a transgender Maine lobsterman, and a severely hyperactive performance artist.
Contrary to the uplifting jacket copy (“Mooney’s search to learn from others once labeled abnormal who have learned to live in beautifully original ways”), I found the book engaging but not especially cheering. The performance artist’s ADHD has rendered him more or less a failure, despite his brilliantly original comic sensibility. The lobsterman is being harassed by developers intent on turning his town into a resort community. The girl with Down syndrome gets fired from her part-time job at McDonald’s. But I was intrigued by Mooney’s effort to unite disparate misfits with the battle cry “Normal people suck.” Along with autism rights activists, he takes society to task for pathologizing what may be normal human variation, expanding the umbrella to claim kinship with an eight-year-old deaf-blind girl and a teenager with cerebral palsy. The book’s apotheosis comes when his eccentric uncle reveals to him that he has suffered from mental illness and then advises him, “Normal is so much bigger than we think.”
As appreciative as I was of embracing difference and flipping the bird to the (neurotypical) Man, I wondered if a sense of rebellious group membership with everyone who either wouldn’t or couldn’t conform—from depressive uncles to the deaf-blind—would help Aurora find her way when the childish afterglow of morale-boosting Edison stories wears off. Other than telling normal people that they suck, what is this movement going to do, and how is it going to do it?
“I think in the first place, normal people suck,” Mooney said genially when I put the question to him in a phone interview. The phrase is more tongue-in-cheek than hostile, but with it, Mooney seeks to solidify an oppositional group identity in much the same way any minority does when it pokes fun at the oppressor. “The first thing to understand is that there is a force we are all struggling against, the imperative to be normal,” he said. “This connects me as a dyslexic to somebody with Asperger’s, ADD, autism.”
Mooney went on to tell me that the goals of the movement he envisions are twofold: that every human being has the right to “build an asset-based paradigm” for himself (a self-concept based in an individual’s strengths rather than his societally defined deficits) and that rather than “fixing people,” we should be “fixing systems” of education and employment. “It’s about a core change away from an individual remediation model to a systemic change, a lowering barriers model,” he said.
As much as I believe in self-determination—the right to be different—for adults with cognitive disabilities, it may be unrealistic to ask parents of severely impaired kids to refrain from trying to “fix” them. But lowering barriers? There’s a battle cry that parents and self-advocates should be able to all get behind. If you can just keep a kid going, helping her over the rough patches, giving extra help where it’s needed, and seizing on anything that looks like a strength or a competence—okay, a gift—that kid might surprise you one day. After all, my father, the math failure, ended up working with matrix theory for a living. Michelle Dawson does high-level scientific research. Jonathan Mooney wrote two books and tours the nation giving talks. Imagine what they might have done with an “asset-based paradigm.”
Just when I think I’ve got my Special Child figured out, she surprises me. Not long ago, an artist friend was visiting us, and my kids wanted an art lesson. Yu Ping gave them an assignment to draw a picture of our family having fun in the back yard. I expected her to exclaim over the work of my younger daughter, who has excellent fine motor skills, no disabilities, and draws very well. But to my intense delight, she singled out Aurora’s picture, saying it showed signs of an unusual sensibility, possibly worthy of cultivating. “Her execution is immature and makes it look like she’s the younger one,” Yu Ping said. “But her way of visualizing is very original. You should have her do more art and see what develops.”
As much as reporting on the neurodiversity movement sometimes made me want to punch a wall, I did end up having my consciousness raised by talking to people like Michelle Dawson and Jonathan Mooney. I’m not giving up on “fixing,” but I did start looking for ways of lowering barriers for Aurora, and decided that handwriting was an easily removable obstacle to her learning. The struggle to form letters on a page threatened to derail the development of her ideas, vocabulary, and syntax. So I got permission to take dictation on writing-heavy homework assignments, and to get her started on keyboarding. The result? She writes more complex sentences, it takes a quarter of the time, and rather than viewing me as a homework enforcer, she sees me as an ally and a helpmeet.