A road to recovery?

Questions abound—including whether it is even treatable

By Julie Deardorff

May 11, 2008

One of my greatest fears is that autism will break into my house and steal my son. It may be irrational, but it's there: He'll wake up one morning and vacantly look through me. He'll lose his words, open and close doors for three hours, or begin screaming, as if in pain.

Then, bam! The child I know and desperately love will disappear into a mysterious world where I can't reach him.

To some parents, kidnapping is a near-perfect metaphor to describe the agony of autism. Last year, the Child Study Center at New York University even seized on it for "The Ransom Note" campaign, which tried to raise awareness about autism and other disorders, including depression, bulimia and attention deficit disorder.

"We have your son," read the ominous ransom note, signed by "autism." "We will make sure he will no longer be able to care for himself or interact socially as long as he lives."

The ad, however, was quickly pulled because it generated so much outrage. Though everyone believes a kidnapped child should be returned, a fierce debate is raging over whether autistic children can—and should—"be recovered."

The controversy is baffling and distressing to many parents who understand that there is no "cure" for autism but have found treatments that seem to alleviate some of the physical symptoms and suffering. If your child had leukemia, they think, why on earth wouldn't you try to treat it?

But recovery presumes that autism is something you aren't just born with. Instead, this line of thought goes, you can "get" it, perhaps from vaccines, another controversial notion because mainstream science refutes any link between the ingredients in vaccines—or the number of shots—and autism.

For high-functioning autistics, such as those with Asperger's syndrome, "recovery" is an upsetting concept because it implies they have something to recover from; it's a loss of identity. And for parents, the intoxicating idea that autistic children can get better often adds to the heartbreak. If there's a cure, they're obligated to find it, regardless of the physical, emotional or financial toll on the family.

Regardless, the recovery movement is stronger than ever, in part because actress, model and author Jenny McCarthy went public with her own sobering journey after her son, Evan, was diagnosed as being autistic.

In her best-selling memoir "Louder Than Words," McCarthy describes how she pulled her son from the abyss by using a variety of alternative methods, including using vitamins, minerals and switching to a diet free of gluten, wheat and yeast.

McCarthy then became the national spokeswoman for the parent training and support group Talk About Curing Autism (TACA), which recently launched a Chicago chapter. The famously outspoken former Playboy Playmate of the Year promoted recovery—and questioned the safety of vaccines—on "The Oprah Winfrey Show," "Larry King" and "The Today Show." "Recovery is like a car accident, where some individuals may die and some receive different wounds," said TACA founder Lisa Ackerman, who met McCarthy through the Los Angeles autism community. "You can't be cured, but you can recover through treatment and time to heal."

Ackerman stressed that there's no one-size-fits-all approach because autism likely encompasses different diseases, pathologies, symptoms and treatments. "But all children should have a chance for a 'normal' life," she said.

But what if children on the autism spectrum don't want the so-called normal life that their parents envision, with hugs, noisy birthday parties and Little League games? What if they prefer to be alone in a back room, creating inventions or working on computers?

The fledgling neurodiversity movement argues that autism is not a disorder—it's a unique way of thinking and viewing the world, and one that should be embraced, not "cured." To them, recovery sounds as if someone wants to mess with their brain wiring, rather than the side effects.

"Even by improving our ability to cope in the world, we will always identify as autistic," said Alexander Plank, founder of WrongPlanet.net, a Web site for the autistic community, in whom Asperger's has been diagnosed. "Autism is not something that comes in and takes away a person but is an inherent wiring of the brain that is part of an individual's genetics."

Plank has a point, but he also is a functioning member of society. A film and video major at George Mason University in Virginia, Plank speaks on neurodiversity at conferences. He has a girlfriend and friends. His interests include computers, writing and acting.

Autism, however, encompasses a range of individuals, from quirky, socially awkward geniuses to those such as Ben Royko, who is still not completely toilet trained at 14, has to live in a residential school setting, has very limited functional language and will never be able to live independently.

"Sure, a high-functioning autistic Aspergerian who is able to lead a satisfying, relatively unimpaired life might not want to 'recover' because, to them, there's nothing to recover from," said Ben's father, David Royko of Deerfield.

"But anyone who would try to tell me that Ben would not, given a choice, opt to 'recover' and lead a fuller life of far fewer restrictions, a life in which he could communicate pain, sorrow, frustration, love, hunger or almost any of the thoughts now locked inside of him—I would say simply, you are very, very wrong," said Royko, the son of the late Chicago Tribune columnist Mike Royko.

One day we may learn whether autism is a permanent psychiatric disorder, a medical problem that is preventable and treatable, or a combination.

In the meantime, perhaps the key to "recovery" lies with some of the very people who oppose it: the high-functioning Aspergerians, who can communicate the way their brains work.

Debbie Ward of San Rafael, Calif., joined autistic chat rooms and read every autistic blog and book she could find after her now 10-year-old son was diagnosed with Asperger's. Although she believes the term "recovery" should be dropped because it implies the mind can be changed, she's convinced that her son is a window to autism, that his mind holds lessons that can be used to reach more severely affected children.

"There is much to be learned from the more functioning children who do allow us to look inside, and who can tell us that it was the presence of a dog in the park, for example, that caused a panic attack upon arrival," she wrote on my blog, Julie's Health Club.

The medical community also can look to one other growing population for answers and insights: children once diagnosed as autistic who have made stunning improvements.

If you don't believe McCarthy, just attend a TACA meeting where you might find moms such as Christina Blakey of Oak Park, Sara DiFucci of Lake in the Hills or Laura Cellini of Springfield.

Or ask Cellini's son, Jonathan, who was once diagnosed with autism but now is a mainstreamed 3rd grader. He was once non-verbal, but he recently told his mother he always thought he was talking.

"I just couldn't understand why you guys couldn't hear me," he told her.