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Changing Minds: Advocates Reshape How We Think About Autism 

Wednesday, Oct 31 2012
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Page 3 of 5

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.

About The Author

Brandon R. Reynolds

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