Sondheim Scholar Ari Ne’eman has plunged headlong into the maelstrom of controversy over autism. His goal? To give autistics – including himself – a significant voice in the debate.
Staring over a plate of Crispy Beef, Ari Ne’eman is contemplating extinction. Not only his own extinction, but that of everyone just like him.
Spectrum StormsPulitzer Prize-winning journalist Joel N. Shurkin examines the wide range of opinions surrounding autism. Read more. |
Everyone with autism.
Ne’eman is dead serious. So much so that he created the Autistic Self Advocacy Network (ASAN) to take on the medical establishment’s thinking about one of the most complex and contentious diagnostic categories in contemporary medicine.
“We’re willing to spend millions to ‘cure’ autism,” says Ne’eman, who started ASAN as a freshman at UMBC. “There’s a high possibility this research will lead to pre-natal tests and selective abortions.” To back up his assertion, he cites studies showing that 90 percent of pregnancies are terminated when the pre-natal fetuses test positive for Down’s syndrome, Spina Bifida, and other developmental conditions.
Now a junior at the university, Ne’eman has built his network into a prominent voice in the autism wars. Too often, he says, the voices of those with autism are supplanted or diminished by those who do not have it. Ne’eman is especially troubled by those who argue that autism is a disorder to be eradicated – and not a culture to be embraced.
“Nothing about us without us,” is ASAN’s motto. And it is a message that Ne’eman has taken nationwide with an evangelistic fervor that has surprised his mentors and administrators.
“He’s incredibly impressive,” says Carolyn Forestiere, an assistant professor of political science at UMBC. “It feels like every other week, Ari’s in some magazine or on a news program. I’m not talking local; I’m talking national coverage.”
Indeed, Ne’eman’s activism has him flying around the country appearing before educators, legislators…anyone whom he feels needs to hear his message. And National Public Radio, the Canadian Broadcasting Corporation, and New York magazine are among the news organizations that have provided a forum for a young man they’ve described as being at the forefront of the autism advocacy movement.
Ne’eman, 21, says he is compelled to speak so often to so many for a simple reason: He knows what it’s like to have been spoken for.
It doesn’t work.
Exile from Mainstream
By the time he was 14 years-old, Ari Ne’eman came to a realization: If he didn’t start advocating for himself, he recalls, he was “going to rot.”
Ne’eman recounts his story in a nearly deserted Chinese restaurant on Frederick Road that is edging towards closing time. Though his voice is quiet and measured, his matter-of-fact recitation only seems to amplify the pain woven into his tale.
In 2000, Ne’eman was diagnosed with Asperger’s Syndrome. It was a term relatively new to the established autistic spectrum at that time. Unlike so-called ‘high functioning’ autistics, who are often diagnosed as toddlers, many individuals with Asperger’s often are identified much later in their development. (In Ari’s case, the diagnosis did not come until he was nearly out of elementary school.)
Clumsiness is one tip-off to Aspberger’s. The ability to speak well, and yet still perform below par in school, is another. And the social dysfunction that accompanies it, though not nearly as marked as it is in so-called “low functioning” autistic children – many of whom shriek constantly and can be uncontrollable – can still be disabling without extensive assistance and therapy.
Such classifications may help clinicians and therapists, but Ne’eman and many others with autism find such labels problematic.
“I never like the terms ‘high’ and ‘low’ functioning,” he says. “If you state that the ‘high functioning’ people are better than the ‘low functioning’ people, then the implicit message is that the ‘normal’ people are better than all of them.”
The most profound consequence of the Aspberger’s diagnosis for Ari was a three-hour roundtrip journey each day to a New Jersey public high school populated by kids with every emotional and mental diagnosis under the sun.
Ari’s mother, Rina Ne’eman, says that the decision to send her son to that particular school – which emphasized social skills over academics – was agonizing. Her son was struggling tremendously in a mainstreamed high school, and extensive research on Rina’s part to find a better environment for Ari came down to two no-win alternatives.
“It became rapidly apparent that it was next to impossible to find a placement that could cater to Ari’s social needs and his outstanding academic intellect,” she recalls. “We had to make a choice. It was unfortunate.” She observes that Ari’s deficiencies in recognizing non-verbal communication were akin to the problem that dyslexic children have processing written language. “Dyslexic children have to work extra hard to learn language cues. Kids with Asperger’s have to do the same with social cues.”
In retrospect, Ari says he did get obtain some benefit from the school. But at the time, he saw it as nothing short of a dumping ground for kids for whom the system’s highest goal was “normalization.” One look at his classmates, kids who never quite ‘fit’ the norm, and he felt the subtext of the place pulse through his bones like dissonant tympani: Forget your own wants, your own desires and dreams; we’re here to teach you how to stay the heck out of the way.
Staying out of the way – or fitting in – had always been hard. As a small boy in private school, his laser-like and inquisitive mind was already light-years ahead of his mates. But Ari was operating in only two dimensions, and his as-yet unrecognized autism wreaked havoc on his social and emotional development.
“He was horribly bullied,” recalls Rina Ne’eman.
Compounding Ari’s problems were a hodgepodge of misdiagnoses common to autistics –including attention deficit disorder – that left him confused and frustrated and carrying a bulls-eye on his back in the schoolyard.
“I was ostracized. I didn’t understand why,” he says. But time has given him some perspective on his young classmates. “To be fair, my interests were vastly different than theirs,” he says. “I wanted to talk about paleontology. It was one of my earliest perseverations. I brought a newspaper to school. In the first grade. They just wanted to talk about when they had seen on TV last night.”
Ne’eman felt himself slowly being pulled away from mainstream education. When the Jewish day school he attended couldn’t easily provide the full range of speech, occupational, and psychological services that can help autistic students realize their potential, Ne’eman moved into public junior high schools.
Much was promised to Ari and his concerned and involved parents in the way of services and support. “Ari was given an aide who shadowed him his first year, helping him in social situations,” says Rina Ne’eman. But it soon became apparent that a shadow wasn’t a substitute for an integrative supportive program. In truth, his public school administrators were insuring that Ne’eman was on his way to becoming, in author Douglas Adams’ insightful acronym, an S.E.P.: Somebody Else’s Problem.
Ari’s transfer to the special-ed high school two years later only confirmed his suspicions that he was being academically exiled. “I was moved into an environment that wasn’t designed to help me,” says Ne’eman. “We were being written off because of what society expects of people with disabilities. It becomes a self-fulfilling prophecy. The assumption was ‘these are special education students; they’re not going to be able to achieve at the same level so we’re not going to provide them with access to the same kind of opportunities academically. We’re going to focus on teaching them how to act normal, using a heavy social skills curriculum.’ In reality, it amounted more to day care than a real education.”
A Way Back In
If the system was attempting to put Ari into check, it underestimated its opponent. In the end, his masterful manipulation of the pieces available to him—his teachers, case workers, and administrators—got him back in the academic game.
Playing various professionals in his educational ecosystem off against each other, Ne’eman and his parents had two case managers dismissed until landing a more sympathetic manager.
Then Ari plead his case to school officials to take just one class at the mainstream high school near his home. In the face of his determination, officials acquiesced.
With one foot in the door of that high school, Ari arranged for his mainstream class to be the last one of the day. Thus, he could quietly slip into extracurricular activities including Model U.N, the economics team, and other academic competitions. Soon the faculty advisors to these clubs were wondering who this wunderkind was. And, better yet, would Ari like to take regular classes with them?
“Sure,” answered Ne’eman, coyly adding that it would sure be helpful if the teachers would pass their request directly to his case manager.
By the 11th grade, Ne’eman was fully mainstreamed again. Almost. His advisors felt it was unrealistic for a special education student to take any Advanced Placement courses. But he argued in his way into two such classes and studied three more on his own, scoring five out of five in a menu of A.P. courses including comparative politics, European and American history, and English Literature.
At the same time, Ari became more adept at negotiating social conventions. Soon, he felt comfortable enough to take his first steps as an activist. Ne’eman’s parents hired a consultant to help him transition back into the mainstream. The consultant was planning to attend an educational conference on special education reform at the College of New Jersey, and knowing Ari’s erudition, he invited Ne’eman to sit on a panel and address the attendees.
“I was nervous, but I knew what I wanted to say,” recalls Ne’eman. “I wrote out a speech before hand but I kept making revisions. At the last minute I tossed it out and just spoke for fifteen minutes off the cuff, and it worked out really well.”
That’s an understatement. Ari left the conference with a Blackberry full of speaking engagements and a path to his eventual appointment by New Jersey’s governor, Jon Corzine, to the New Jersey Special Education Review Commission.
But as his mother picked him from the conference, they had a more immediate journey in mind. They were heading down I-95 that evening, to visit a university that had caught Ari’s eye.
They were headed to Catonsville. There, the offer of a Sondheim Scholarship, a political science/public policy education, and the chance to publish research as an undergraduate was an irresistible lure, a place—perhaps the place–that would allow his activism to blossom.
Ari Ne’eman knew that at UMBC, his voice would be heard.
Debating Difference
“I am abnormal,” admits Ari Ne’eman, between sips of green tea at the restaurant. “I don’t have a problem with that.”
How abnormal Ne’eman and others with Asperger’s Syndrome are is the cause of considerable debate. (See “Stormy Spectrum.”) But he argues that such debate misses the point entirely.
Some medical professionals feel that Asperger’s is closer to a social learning disorder than it is to the sensory hypersensitivity and language issues more aligned with classic autism. But talking to Ne’eman over dinner, it becomes clear that the diagnostic lines are fuzzy.
It is not that Ari sounds or acts differently than—and here’s that subjective word again—”normal” folk, but he’s had to work at it. On the sensory side, he observes that certain random input used to drive him to utter distraction. As a kid, for instance, the fabric on the roof of the interior of his dad’s car used to make him cringe, but he was unable to ignore it.
“It drove me nuts,” he says. “I hated riding in that car.”
Other issues dealt more with language interpretation. Extreme literalism is an Asperger’s trait, and though Ne’eman can laugh about it now, certain idioms used to baffle him.
“It’s common for many of us. When I was younger, I found the phrase ‘raining cats and dogs’ an extremely bizarre expression,” says Ari. “One time I read in a TV magazine the phrase ‘Rumor has it that a character will disappear during the next season.’ So I thought that a villain named ‘Rumor’ was going to make this other guy disappear.’ It was a problem at the time.”
That it isn’t a problem now is at the heart of Ne’eman’s proselytizing for what he calls neuro-diversity. In short, neuro-diversity advocates argue that instead of trying to medically eliminate autism (and, by proxy, Asperger’s itself), resources and research should be redirected towards providing education, therapy, skills, and services, regardless of where someone is found along the autism spectrum.
Given his druthers, Ari would replace labels and restrictive systems with integrated medical, technological and academic support that lets people with autism dictate their career and life paths. Instead of ranking people, says Ne’eman, “I’d rather put forth a model where we assess people on the basis of their objective traits and their needs.
Not surprisingly, there is a vast chasm between Ne’eman and other neuro-diversity advocates and the parents of children so severely affected by autism that the family’s waking life consists of endless shrieking tantrums, relentless hyperactivity, and an almost-complete disconnect from the world.
When asked why scientists shouldn’t devise methods to prevent this kind of disorder in developing children, Ne’eman deflects the question away from prevention and toward his own concern for those who have already been diagnosed – and who may be diagnosed before they are even born. While people with autism do have high rates of mood disorders, he says, the answer is to treat those symptoms, not eliminate the patient.
“We think there’s value in addressing how many of us are more likely to be severely depressed, [and/or] suffer from tremendous anxiety,” argues Ne’eman. “But the way to address that isn’t in saying: “Well, we’re going to take a certain class of people and prevent them from existing. These things don’t come out of nowhere. There’s a susceptibility because of biochemistry, but also we’re anxious because of the significant number of communication issues and social rules that we’re expected to perceive and follow.”
Ne’eman places great faith in advances in communication technology that may redefine the capabilities of people with autism. He points out that across the autism spectrum, keyboard-oriented communication devices have allowed non-verbal people with autism to prove that lack of verbal skills does not equal impaired intelligence. Such results have compelled educators to reassess what disabled people are capable of achieving, he says.
“A friend of mine with autism, up until age 12, was assumed to be… the term then was ‘mentally retarded,'” he says. “That evolved into ‘has mental retardation.’ That evolved into ‘has an intellectual disability.'”
Ne’eman breaks into a smile. “Now he’s graduated from Syracuse University. He’s expressed his ability by being able to communicate.”
Clear parallels between the autistic and deaf communities also intrigue Ne’eman. To those looking in from the outside, both groups appear to be laboring under severe handicaps. Yet many in the deaf community consider themselves not to be disabled, but rather part of a unique culture with its own form of complete communication. (In the deaf community’s case, American Sign Language.) Wipe out their disability, they claim, and you’ve committed the medical equivalent of genocide.
Neuro-diversity proponents make a similar contention. People with autism have much to offer the world just as they are, these advocates insist. The spotlight should be on helping them to communicate their unique ideas, creativity, and viewpoints.
There’s little doubt that Ne’eman has succeeded in getting his message out. Ari chose UMBC over schools such as New York University, he says, because he was convinced that his outside advocacy work could flourish while he studied the intricacies of public policy and government.
His instincts were correct: In his role as president of the Autistic Self Advocacy Network, Ne’eman has been interviewed and featured in numerous media outlets: ABC’s Good Morning America, Salon, Education Week and in a Canadian Broadcasting Corporation documentary titled Positively Autistic.
Ne’eman’s closest mentors at UMBC see him as an amazing intellect – and as a work in progress. “He’s one of the brightest students we’ve ever seen. Uncommonly prepared,” says Carolyn Forestiere, with whom Ari conducted comparative politics research as a freshman.
He’s since presented his own position papers on autism at several educational forums. His article on how popular culture portrays people with autism will soon be published in the International Journal of Inclusive Education.
Listening to Ne’eman is much like being in the presence of a tenured professor capable of deftly marshalling facts to support his position. And his assurance in the rightness of that position can be fierce and unyielding to the point of impatience with alternative arguments.
When a talk show host openly wondered why Ne’eman wouldn’t take a pill if he could to cure his autism, Ne’eman could hardly hide his disgust. “That’s an unfortunate perspective,” Ne’eman told the host. “(Autism is) part of who we are. I think there’s something deeply unethical and very troubling with rewiring the fundamental aspects of how somebody thinks and perceives the world.”
“He doesn’t suffer those he considers to be fools gladly,” says mentor Simon Stacey of UMBC’s Honors College. Stacey points specifically to Ne’eman’s dismissal of many parents who claim that their infants developed autism as a result of childhood vaccinations. While almost all medical evidence rules out a link between the two, Ari cuts little slack to parents who still seek to establish such a connection.
“If you get him started on [these parents’ concerns], he’s really quite vitriolic, almost,” says Stacey. “He needs to temper his comments a little bit. This is a big movement that he needs to get on his side and behind him.”
Ne’eman acknowledges he’s gradually becoming more politic as he progresses toward his degree and life after college. But he is no less focused on his future goals. He has just received an appointment to Maryland governor Martin O’Malley’s Maryland Youth Advisory Council, and he is beginning to look to his post-UMBC career. Law school, applying for a Rhodes Scholarship, post-grad work in International Relations…all are possibilities.
What is definite is Ari’s desire to remain what he calls ‘a change agent’ – someone helping to redefine the face and the future of people with autism.
“I feel like I’ve set up a good foundation,” says Ne’eman, of both his advocacy and his education. “As long as I stick to my ideals, the core values that I hold, I’ll be able to continue to make a difference. That’s really what I’ve always aimed to do.
“I think that’s one of the most important things anyone can do in this world.”
Mat Edelson is a national award-winning freelance medical and investigative journalist based in Fells Point. His current book, with Chef Rebecca Katz, is One Bite at a Time: Nourishing Recipes for People with Cancer, Survivors, and Their Caregivers (Second Edition, Ten Speed Press).
Tags: Winter 2009
