Self-advocates reject the term disease; seek accommodations instead.
by Greg Marx
Posted June 26, 2009
Ari Ne’eman likes Thai food. He especially likes nua-num-tok and pad Thai with beef, which he orders every time he comes to his favorite Thai restaurant on First Street in Washington, D.C., not far from the Library of Congress. Ne’eman makes this minor revelation shortly after we meet for the first time, then watches me pick up my pen. “You’re writing that down, aren’t you?” he asks.
Ne’eman, a graduate of East Brunswick High School, can be sensitive about how he is portrayed, and not without reason. As a teenager, after being diagnosed with the autism spectrum disorder Asperger syndrome, he had to fight to be included in a mainstream classroom rather than a segregated special-education environment. Now, at the age of 21, he is one of the most visible figures in a movement of “self-advocates” who are challenging the way autism is perceived, researched, and treated. Their claim: The brains of autistic individuals work differently than other people’s, and that can pose challenges as they make their way through a world designed for so-called “neurotypicals.” But autism is not a disease, say the self-advocates, and it does not require cure or prevention—approaches that self-advocates say amount to a eugenicist impulse to eliminate a strand of human experience.
Instead, they say the condition calls for support, accommodation, and acceptance of difference. (Support can include alternative means of communication, residential options, and counseling in social skills.) And while autism policy has traditionally been established by either parents or professionals, the people who are best-equipped to define their needs, they argue, are autistic individuals themselves. “Some possibility of self-advocacy, some possibility of self-determination, I believe exists for everyone,” Ne’eman says. However, Ne’eman does “acknowlege and defend” autism’s consideration as a disability.
Ne’eman advances this line of thinking from his post as president of the Washington-based Autistic Self-Advocacy Network (ASAN), which he founded in 2006. (A senior at the University of Maryland, Baltimore County, Ne’eman spends much of his time in the nation’s capital.) The organization grew out of an autistic culture movement that has been building for two decades, and is part of a larger effort to promote “neurodiversity”—the concept that differences in neurological orientation are just as legitimate as other variations in the human condition. ASAN has become, in short order, a leading advocate for a policy platform that includes alternatives to institutionalization, greater investment in communication support, and a de-emphasis on genetic research. It amounts to, Ne’eman says, nothing less than a new civil rights struggle.
In many respects, ASAN has been startlingly successful. In 2007, the organization led a successful effort against the New York University Child Study Center’s “Ransom Notes” campaign, which equated an autism diagnosis with kidnapping. A bill that would enact one of the group’s top current policy objectives – shifting people with developmental disabilities from state institutions to community housing – has been introduced in both houses of the New Jersey Legislature. And, increasingly, mainstream autism organizations are incorporating the views of people with autism.
Marguerite Colston, a spokeswoman for the Autism Society of America, notes that her organization has three autistic adults on its board of directors. “I basically report to people with autism,” she says. “They set the policies we use.” Similarly, Autism New Jersey, a statewide advocacy and services group based in Ewing, has a person with autism on its board and plans to establish a separate self-advocate advisory board made up of people on the autism spectrum, according to its executive director, Linda Meyer.
Ne’eman’s skill and savvy have been key drivers of much of this change. “I love watching him make a recommendation, because he’s making it at the same high level of understanding of policy that the state folks are,” says Leslie Long, public policy director for Autism New Jersey, who served alongside Ne’eman on the New Jersey Adults with Autism Task Force. “He makes you look at yourself in the mirror.” But Ne’eman’s talent—and the effectiveness of other ASAN officers like vice president Scott Robertson, a Wayne native who diagnosed himself with Asperger syndrome (it was confirmed by a professional) and is now pursuing a Ph.D. at Penn State—is in some ways a challenge for the movement he represents.
Though Ne’eman has always struggled with social and non-verbal communication—encountering a complex social situation like a party, he says, can be “somewhat akin to walking through a minefield with a blindfold on”—it would be hard to argue that he should not have as much autonomy as anybody else, with whatever support is needed to make that possible. But ASAN is not only calling for better services, more dignified treatment, and greater attention to the words of autistic individuals who can speak for themselves. It is also pushing back against what Ne’eman, with rising anger in his voice, calls “the cure agenda”: the effort to find a cure for autism or, more feasibly, to identify ways to prevent it.
These points sometimes put self-advocates into conflict with researchers and parents, who may look at a “high-functioning” autistic person and think: I’m glad you are doing well, but the things you are talking about don’t bear much relation to my child.
One chilly evening late last fall, I paid a visit to the home of Joel and Lila Redmount, on a quiet street in Scotch Plains across from the local elementary school. Joel, an advertising executive and a board member of Autism New Jersey, and Lila, a social worker, have four children. The oldest, Logan, was diagnosed at age 2 with “severe autism,” including serious communication impairments and broader developmental disabilities.
When Logan was 6, the Redmounts moved to New Jersey, where Logan entered a school that used an early intervention protocol known as applied behavior analysis and learned snatches of sign language: drink, bathroom, help, more, thank you. More importantly, Lila says, “what Logan learned was to live with us.” (ABA, though endorsed by many researchers and autism organizations, is controversial within the self-advocacy community. Asked about ASAN’s position, Ne’eman says, “We have a great deal of concerns around how the field has focused on normalization above skills-building and the prevalance of abusive practices …. amongst many practitioners within the field.”)
Though her eldest son still does not speak or read and rarely initiates communication, Lila says, he is “absolutely attached” to his 9-year-old brother, Nathaniel; her face lights up as she describes them playing on the trampoline together in the family’s backyard. Now 22, Logan can no longer attend school, but after a bumpy transition he “seems to have adjusted well” to sheltered employment, Lila says. “He comes out with a smile on his face.”
Many of the Redmounts’ concerns overlap with ASAN’s. Both want better residential options for adults, more support services, and a society that does not stigmatize unusual behaviors. But their relationship to autism, and their idea of what it means to be an advocate, is very different. “For us, as a family, Logan doesn’t have a voice—we have a voice,” Lila says. And while he understands the anti-cure argument, and came to terms long ago with the fact that his own son would never be cured, Joel says, “If we could cure Logan’s autism by tomorrow, we would certainly do it.”
As for Logan’s ability to advocate for himself, Joel says, “I have trouble equating self-determination with Logan.”
According to Peter Mundy, a developmental psychologist and Berkeley Heights native who now serves as director of educational research at the M.I.N.D. Institute at the University of California-Davis, one of the key issues surrounding the debate is IQ. A Center for Disease Control study, drawing on data collected in 2000, concluded that about 40 percent to 60 percent of individuals with autism have intelligence that falls within the normal range. “The vast majority of people with autism today have great potential,” Mundy says. But he adds, “When you start getting below 50, in terms of IQ, in combination with autism, that becomes very, very problematic for nearly all affected people.” And while the ideal of self-determination is commendable, “in some cases, inclusion or self-advocacy either isn’t practical or isn’t optimal for the health and development of the individual,” Mundy concludes.
Acceptance of the different philosophies about autism has very tangible consequences. A strategic plan for autism research recently prepared by a federal advisory body, for example, recommended hundreds of millions of dollars for biological research, with a comparatively scant amount to study services and support. In the eyes of many self-advocates, the balance should be shifted substantially.
Still, it’s possible to overstate the significance of the divide. For one thing, the different camps may use competing language to talk about the same goal. Ne’eman, for example, would likely see Logan Redmount’s smile at the end of the day as an act of self-determination, while Alison Singer, former executive vice president of Autism Speaks, says that “when my daughter is able to function at the level that [Ne’eman] is, I will consider her cured— that’s the goal.” For another, the split is far from absolute: Plenty of family members adopt the neurodiversity perspective, while Ne’eman is at pains to say that the self-advocacy movement is not about “dictating to parents,” and that it needs to remain vigilant about being accessible to people with intellectual or communication disabilities.
Walking off that pad Thai after lunch, Ne’eman reflects on the movement he is a part of. The goal, he says, is to create “better quality of life and better services for autistic people across the spectrum. As long as that’s what guides us, I think we’re moving in the right direction.”
Greg Marx is a Jersey-City-based freelance writer. He was recently named an assistant editor of the Columbia Journalism Review.