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.
jdeardorff@tribune.com