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Changing Minds: Advocates Reshape How We Think About Autism 

Wednesday, Oct 31 2012

Illustration by Andrew J. Nilsen.

The protesters call themselves "autistic people." Members of the organization they're protesting call them "people with autism." While this may seem like another blip in the mostly inconsequential static of political correctness, the simple act of naming is tied up in the perception of whether autism is an epidemic disease or a developing culture.

On a sidewalk in Sacramento, the nine protesters are holding signs and handing out fliers in the path of an annual fundraising walk for Autism Speaks, the most visible autism organization in the United States. It acts as a clearinghouse for families on various subjects: daily life, bullying, legislation. It offers a way to connect. Comments on the Autism Speaks website reflect support and pride for autistic people, which explains how nationwide Walk Now for Autism Speaks events alone raised $30 million in 2011. That's not counting the millions of dollars in major gifts, the $3 million raised by Toys "R" Us, Inc., and the $300 million worth of donated advertising. The ads may be the way in which Autism Speaks is most influential — and most objectionable to the autistic protesters. Autism Speaks, founded in 2005, has influenced public discourse about autism by declaring a mission to researching the "causes, treatments and prevention" of this "disease." But if your condition is a part of your identity that you don't want cured or prevented, an organization like Autism Speaks and its supporters, however good their intentions, are going to seem, as Andy Voss, leader of the protest, says: "misguided — dangerously misguided."

Which is why how the autistic community refers to itself is more than just PC flap. Organizations like Autism Speaks use the term "person with autism" to reinforce the idea that underneath that condition, however debilitating, is a person who deserves to be loved and respected. That's "person-first thinking." Autistic self-advocates like the protesters, though, think "person with autism" implies that autism is something separate and bad and hopefully removable. That's why these self-advocates use the term "autistic person" — called "identity-first" thinking — connoting that autism is essential to who they are.

You can understand why a parent might bristle at the thought of their child being an "autistic person." To them, it's like calling someone a "cancer person." But, say the self-advocates, cancer can kill, while autism is a way of life.

It's worth noting that the blind and deaf cultures, like the protesters, also reject person-first thinking for marginalizing a condition that is fundamental to their community. "Cure," "disease," whether a person "is" something or "is with" something: These raise serious questions of how meaning is shaped, and it's appropriate that a group of people whose condition affects their interpersonal communication is shaping a conversation with society at large.

These are supremely tricky issues.

Certainly some of the thousands of walkers — parents and siblings and friends of people with autism — seem a bit perplexed at this small band on the sidewalk with their signs that read: "There is no 'cure' for autism. We're fine the way we are." "Autism Speaks doesn't speak for me." Or by their fliers: One says that the majority of money raised is being used for "causation and 'prevention'" rather than improving the lives of autistic people, and that there are no autistic people among Autism Speaks's leadership; the other flier, a list of autistic people murdered by family members.

The protesters, black and white, male and female, quiet, eccentric, otherwise, aren't protesting the walkers per se. They're protesting Autism Speaks, which is, in the words of one protester, "brainwashing everyone."

Up at Raley Field, the Autism Speaks gathering is festive. Young families, team T-shirts, wagons; a happy event focused on the kids who have a condition that is, despite decades of research, still mysterious. We know that there are many forms of autism caused by a variety of genetic and environmental causes. We know it can cause mental impairment, anxiety, speech problems, social disorder. It also often results in intense focus, creativity, memory, insight, high intelligence. We don't know what causes it or even, really, how to diagnose it. The latest figures have one in 88 kids being diagnosed with one form of autism or another, yet there's no sense of people resenting that an epidemic has brought them here. Polio never looked this fun. Still, for an organization whose stated goal is to cure a condition that others are proud of, well, it's going to get contentious.

Which is how groups like the Autistic Self Advocacy Network (ASAN) come about. ASAN's co-founder and president, Ari Ne'eman, an autism-rights activist in Washington, D.C., has seen how all those kids grow up and look for something else. "Autism Speaks tends to rely on bringing in younger families by stressing the idea that by donating money to them, their children can be made normal," he writes. "As parents begin to realize that their autistic children will become autistic adults, they often start to look for more disability rights-oriented organizations and solutions."

It's ASAN's Sacramento branch that gathers now in the shade of big trees overlooking the Sacramento River. They're discussing the success of the protest, what they should do differently next year, the fact that the walkers seemed more receptive than at last year's protest. No one told the protesters to jump off a cliff this year, says Voss, a 22-year-old student at California State University, Sacramento and co-founder with Zachary Miller of ASAN Sacramento. Voss was diagnosed with Asperger's at an early age, and taught himself to be social and gregarious because he knew that was the way to get along in neurotypical society.

"Neurotypicals" are the non-autistic, the cognitive majority. The others — autistic, intellectually disabled, schizophrenic, ADHD, bipolar — are part of the self-identified "neurodiversity" movement, which began coalescing in the early '90s and suggests that having a different kind of brain is a right rather than a curse. Here's Harvey Blume in a 1998 piece for the Atlantic: "With so much going on in a brain, the argument goes, the occasional bug is inevitable: hence autism and other departures from the neurological norm. ... Neurodiversity may be every bit as crucial for the human race as biodiversity is for life in general. Who can say what form of wiring will prove best at any given moment?"

Off to one side, a woman in the group sits on a low wall, rocking softly and flapping her hands, a phenomenon called by the medical establishment "stimming," for self-stimulation — a term which the autistic community has by all accounts enthusiastically adopted. It's a response to the flow of sensory stimuli, either an arousing or soothing way of riding out the experience of the world. One could imagine it like wind filling a sail.

Anyone who's taken psychedelics and gone to an unmellow place will appreciate the feeling of being overwhelmed by light and noise and people unless you get the hell out of there already. This is a gross oversimplification of the autistic experience, certainly, but gets at the idea that autistic people have different sensory filters and, often, an inability to communicate their discomfort.

So one can perhaps understand why school or jobs or home-life might become an unpleasant and difficult-to-manage experience for the autistic person, and why they might be annoyed and resentful at an entire civilization as loud and blinky as a Vegas casino.

Then there's a man named Bear. Long-bearded, overall-ed, with a business card that says his name and, simply, "Math." He's got a little drum slung on a cord under his arm, and thinks we've all evolved the ability to look right through protests ("It's not even a message anymore," he says. "I think we should just carry drums"). Fliers and messages and the incantations of proper terminology don't seem to impress him much. But he has a request.

"If there's only one thing I want to see in your story," he says, "It's that we're people."

Autism is so little understood in the world at large that practically nobody's ever heard of one of its commonest forms. It's called fragile X syndrome, and while it's not well known, it is pretty well understood by science.

A disorder affecting about one in 3,600 boys and one in 5,000 girls, fragile X syndrome is responsible for about 5 percent of all autism diagnoses. Fragile X is, genetically speaking, simple enough: It's caused by a mutation on a single gene on the X chromosome. The mutation shuts down production of a protein important in the development of synapses, the 100 trillion connections between brain cells that wire and rewire themselves throughout life. How important that gene is to the development of behavior, personality, and maybe even consciousness is still being researched, but it gets into squishy philosophical territory.

What's happening inside the skull when organisms are going around and learning and storing memories and accruing experiences is basically a dialogue between the macroscopic world and the microscopic one. Experiences — learning a language, figuring out how to walk or run or do fractions, storing images and voices — all those familiar things are being encoded from one brain cell to another across the synapses, the gap, the absence where everything happens. Faces and languages and memories aren't actually stored in the brain in pictures or words, but in the patterns the neurons develop. But those neurons by themselves are no more the self than a chessboard is a chess game. The self isn't a product; it's a process.

Think of those old-timey telephone switchboards with the women in big glasses, plugs going in and out. Des Moines, you've got Cleveland on the line. The shape of an apple traces one pathway, a lullaby traces another. Special proteins hanging out in brain cells are making and breaking those connections. Into this environment comes that fragile X protein to regulate these interactions, the operator with the biggest glasses.

This protein is called the Fragile X Mental Retardation Protein, or FMRP. While it would seem by its name that the protein causes fragile X syndrome, in fact it is the absence of this important regulating protein that causes the disorder. The absence of FMRP in boys can cause mental impairment, autism, anxiety, hypersensitivity, epilepsy. It's less severe in girls, who have another X chromosome to offset these effects. Still, girls with fragile X can have learning disabilities, depression, and reproductive issues. Carriers of fragile X may not display these extreme qualities, but can be affected by physical and mental problems later in life. Anecdotally, another symptom of fragile X kids is a good, if weird, sense of humor.

In the last decade, the discovery of how this protein works has led to the development of drug treatments that may be revolutionary in that they don't just dull the unpleasant symptoms of autism, like previous drugs, but may actually help restore proper brain function, improving the ability to learn and communicate. Randi Hagerman, medical director at UC Davis' MIND Institute, has studied fragile X for three decades and is its foremost expert. She thinks FMRP may be "perhaps the most important protein for human cognition."

Down at the cellular level, FMRP controls a whole cascade of molecular interactions which work on those synaptic connections. One of these molecular receptors is linked to cognition, mood, and anxiety. A new drug restores function to this receptor.

A study just published by the MIND Institute and Chicago's Rush University, two of the top fragile X research centers in the world, concluded that kids treated with the drug, called arbaclofen, showed improvements in sociability and reductions in anxiety.

The mothers of kids who were on the drug describe a child they knew was in there, emerging more fully.

"He seems to be more aware of everything around him, good and bad," says Cari Wheeler of her 11-year-old son, Max, who's been on arbaclofen for about a year. The family lives near Madera, and they have been bringing Max to the MIND Institute since he was a baby. "He's putting sentences together and saying stuff on his own, which he wasn't doing before." Wheeler credits arbaclofen for the improvement in Max's language skills, which have made him more willful and independent.

She also notices now that he's sad sometimes, which could be a consequence of growing self-awareness from the drug, or a sign that he's expressing what was once locked inside. Either way, it highlights a kind of strange risk of developing drugs that take essentially happy people who live in their own worlds and usher them into the wider one. When asked whether she'd opt for a hypothetical magic-pill-type cure for Max, given the risk of what might be lost, Wheeler says, "I kind of look at Max and he's so innocent and so sweet that I would hate to lose those qualities. But I want him to have the most functional life."

Janet Rivera in Whittier doesn't worry that a drug will change her son Kenny into somebody else. "Kenny will be Kenny," she says.

Rivera says her 12-year-old son, who's been on arbaclofen for a few years, had behavior problems and, like Max, began talking more after starting the medication. He's still got issues with anxiety, but she looks forward to further improvements.

"It's gonna enhance him, help him learn a little bit better." she says. "It'll help him more with his life, I think."

Rivera's opinion on fragile X is typical of parents of disabled children: They see the kids as separate from the condition. She can say "I don't know if fragile X will ever be gone. I hope one day it will be," without suggesting that her son is worthless. It's person-first thinking, and it's hard to see it as other than good and decent. For Janet Rivera, like many, finding viable treatments now may mean that her child will be able to take care of himself after she's gone.

Mark Bear, the researcher at Massachusetts Institute of Technology whose discovery of the protein's function in 2003 led to the current crop of drugs, sees this one little-known type of autism potentially affecting other forms of autism. "I'll be extremely pleased if 'all' we've accomplished is helping people with fragile X," he says. "There is the hope that maybe a lot of individuals with autism may respond to treatments that are effective in fragile X."

Since there is a constellation of autisms out there with a variety of causes — combinations of genes and environments — no one drug will likely affect all kinds. But the possibilities of big changes are such that both Roche (a partner with Seaside Pharmaceuticals, which Bear co-founded) and Novartis, two of the largest pharmaceutical companies in the world, are rushing to develop these new treatments for fragile X and other forms of autism. It's potentially a very lucrative market.

This is where ASAN's Ne'eman gets nervous. Ne'eman, who was named by President Obama to the National Council on Disability, agrees with using drugs to help autistic people, but worries that genetic research is heading toward engineering autism, and by extension autistic people, out of the gene pool. "If there's one thing that America's horrid experimentation with the 20th century eugenics movement should have taught us, it's that it should always be a problem when we talk about eliminating a segment of the population," he writes. "To us, saying that autism should disappear from the world is the same as saying that autistic people should disappear from the world. The way our brains work can't be held at arm's length from ourselves."

This might seem like slippery-slope hogwash, but for a few facts. One: Prenatal testing has led to the termination of at least 50 percent and perhaps as much as 90 percent of Down Syndrome fetuses. And two: In a 2011 study in which 108 mothers of fragile X children across the country were polled about their future reproductive decisions, 77 percent said they wouldn't have any more children. With a new blood test for newborns, mothers are able to learn whether they and their child carry fragile X before any symptoms even show up, and can make those reproductive decisions earlier. So while engineering babies for hair color and tennis aptitude may be decades away (emphasis on "may"), we are shaping the human genome here, now, by omission. This is why the perception of autism is so important. Is it a disease to be scrubbed from the system? Or a valid and growing culture? If the population of the world is about 7.075 billion and one in 88 of those is autistic, that's about 80 million autistic people in the world, just less than the population of Vietnam. So if we regard the autistic culture as valid, is it an act of genocide to eliminate them from the gene pool?

In the interest of journalistic transparency, I should reveal a bias here. Like you, I might be unfamiliar with the vagaries of autism and fragile X syndrome, if not for the existence of my brother, who is fragile X, or has fragile X, depending. Three decades of hand-flapping and weird humor and apocalyptic fits and the occasional shoe thrown from a school bus window have shaped me as much as it has him. To say I am unaffected by fragile X syndrome is both true and not. I got my mother's unaffected X chromosome, and my brother got the other one, the fragile one. But we influence one another just as adjacent brain cells wire one another. The synapses are between us, so to speak. Since it was only a coin toss that separated us (it could be his byline up there), I continue to appreciate how much rides on that molecular game of chance we play as non-beings. We're all in that bright casino, really.

Just up from the cable-car turnaround at Powell Street is a radio station. It's TradioV, a newly launched station that live-streams its broadcasts on the Internet. Robert Miller, executive director of the National Fragile X Foundation (NFXF) in Walnut Creek, is waiting to go on a show about disabilities. NFXF is a sort of holistic middle ground between the families and the research organizations. It's a hub of information for fragile X families on everything from daily living skills to discovering new treatments. It pushes for new legislation. Fragile X has benefited funding-wise from the increased interest in autism over the last few decades, and while the organization is heavily involved in research, it is sensitive enough to the needs of fragile X people that ASAN works closely with it.

Miller brings to his organization a certain philosophical consideration. He's a wise and balanced guy who recognizes the peril and the promise of new drugs. These medications stand to improve lives and functionality, but what if they cause other problems? What if someone improves just enough to recognize his limitations? Miller sees a cycle-of-life aspect: Younger families tend to focus more on cures, while families with older fragile X members tend to want their loved ones to be provided for, to be supported and comfortable and have whatever version of "the best life possible" makes sense. But he supports where this line of drug inquiry is going.

"Some medications might address learning, some memory, some anxiety," he says. "So, the more the better."

The host of the show, Tracey Ricard-Barber, walks in and greets Miller. Ricard-Barber is from a fragile X family, with affected nieces and uncles and grandparents spreading all along the family tree and back into her ancestry. One scientist says that the fragile X mutation can move through a line for a hundred generations — 2,000 years. Ricard-Barber's got eight in her immediate family, including two daughters, one of whom is moderately affected. Her show, "Friends Without Benefits," only 2 months old, covers disability issues for the intellectually disabled, veterans, and the elderly. She, like a lot of parents, believes that there is promise in these new drugs; though she's never liked drugs for her daughter, she is considering arbaclofen.

There was a brief period where the family gave anti-anxiety drugs to their daughter Mikayla. "It would knock her out," Ricard-Barber says. But she's optimistic about drugs to help autistic and fragile X people combat the anxiety and depression she sees in her own daughter. She hopes new medication will help them "function better ... to allow their real personality to come out even more." But she's in favor of medication only insofar as it helps the person feel better — "not to change them, but to enhance them."

This attitude echoes something ASAN's Ne'eman says is fundamental to determining the value of any good treatment, pharmacological or otherwise: It should help the autistic person, not just subdue them so that they're easier for everybody else to deal with. Prescribing drugs that just sedate the person is, he says, oppression.

Ricard-Barber agrees: "It's to improve their quality of life. We shouldn't worry about the public too much; they need to change anyway."

She thinks society needs to work harder to find opportunities for the disabled. When her daughters were in school in Napa, where the family lives, Ricard-Barber started a program to open school stores, selling food and school supplies, designed to employ the autistic and disabled alongside their non-autistic peers, a kind of business mainstreaming that she wants to see adopted widely.

After the show, out where the cable car spins on its turntable, Miller talks about how integration brought enlightenment to race issues. He hopes mainstreaming will have the same effect. "We're all the same and we're all different," he says. To be able to hold those two truths at the same time and not have to choose one — to me that's the difference."

Perceiving things differently: For Nick Walker that is both professional mission and mental orientation. Walker is a number of things: aikido sensei at his dojo in Berkeley; doctoral student studying neurodiversity; former special ed student and teacher; autistic. He's fascinated by movement, by the interaction of moving bodies, which makes sense in the context of aikido, which is about how to "look at conflict as opportunities for grace." Using an opponent's energy to flow off and around them, to turn it against them if necessary. In his airy studio, watching him work with his students, it seems like the most evolved (or at least formidable) kind of stimming there is.

"I'm the most advanced autistic martial artist in the world, as far as I know," he says later at a café. He vetoed an earlier place because he didn't like the light and the noise, but here seems more relaxed. Underneath his calm, he is a fierce activist.

"There is no non-autistic person trapped beneath the autism just like there's no straight person trapped beneath the gay," he says. Sussing out how the narrative of autism evolves is a part of his work. He sees parallels in everything from colonial Africa to 20th-century feminism to the gay rights movement, and parallels in repression.

"If we didn't have value in hunter-gatherer society, we wouldn't still be around," he says, reflecting research that argues that the autistic mind — visual, spatial, logical — has been necessary to push the species along. From creating the perfect spear-point onward, there has been a line of unconventional thinking in the species that, some scientists say, points to the prevalence of autism throughout time.

But just how, or why, is autism still around, if it causes so many problems? How are autistic people reproducing enough to push that constellation of genes down the line? One thought is that those genes that code for autism are related to intelligence. Dr. Hagerman and others believe the fragile X protein, for one, is deeply involved in cognition. That having more of the protein makes you smarter, able to learn more efficiently. Maybe autism is a natural consequence of the evolutionary experiment in human intelligence.

Whatever the case, says Walker, autism has been a permanent feature of the species. "We're part of the gene pool," he says. "And we're part of it for a reason."

To understand one another better, it may take both activism and science to find common ground.

As Cari Wheeler says about Max, who with this new drug seems to express himself better and demonstrates emotions she never saw before, maybe it was something he'd been feeling all along, "but we would've never known it. He's kind of in our world now."

Which works both ways: Back in the café, Walker is explaining how he experiences the world. He's synaesthetic, his senses blending so that light, color, smells all blur and merge. He very much enjoyed hallucinogenic drugs. But he really enjoyed taking drugs with his neurotypical friends. "I love non-autistic people when they're on acid," he says, because they can, finally, "come and play in my world with me."

About The Author

Brandon R. Reynolds


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