Today, autism is the second leading cause of disability in children, behind mental retardation. According to the Autism Society of America, as many as one out of every 166 children born today is autistic. The condition affects up to 1.5 million people nationwide and is the fastest-growing developmental disability; in the ’90s alone, instances of autism rose 172 percent.
Mary Grace Mauney leans back and stretches her legs out toward the sky. The squeaky chains get louder as she pushes forward, and her long, dark strands of hair blow past her haunting blue eyes. For a moment, her backside leaves the yellow seat of the swing as she lifts off into the air. She methodically pulls her splayed legs back, flexing her hamstrings, and her body follows, swaying past the wooden bars. Her forearms wrap around the chains. She revs up her legs again and continues to soar.
IN MOTION: Mary Grace is soothed by the flight of a swing.
The constant back and forth motion soothes her. It’s a motion she can control, unlike some of her other thoughts and actions. Sometimes she likes to sway slowly, her heels grazing the bottom of the matted dirt in her back yard. She can twirl, too, twisting her knees back and forth. Other times, she’ll just sit — grasping the chains and slowly rocking. But when she gets the swing going, really going, it’s like she’s vaulting over the treetops and leaving earth, until gravity pulls her back down.
Mary Grace, who is 16, has been swinging on the set as long as she can remember. It’s been reinforced four times as she’s grown from child to teenager. It’s her place to think, to get so deep inside herself that the world seems to disappear. It doesn’t matter if the temperature is 20 degrees or 90 degrees. Mary Grace swings almost every day to think about things, or else to forget about things and just get lost in the motion. She can reach the sky as many times as she wants. Sometimes she’ll swing for hours before her feet gently touch the dirt and she comes to a halt. It’s time to return to reality.
Much of Mary Grace’s life is defined by the fact that she suffers from autism. When she was born, about one in 2,000 children developed the disorder. Today, autism is the second leading cause of disability in children, behind mental retardation. According to the Autism Society of America, as many as one out of every 166 children born today is autistic. The condition affects up to 1.5 million people nationwide and is the fastest-growing developmental disability; in the ’90s alone, instances of autism rose 172 percent.
Autism impairs a person’s ability to interact and communicate effectively. It carries a variety of symptoms, with no one-size-fits-all diagnosis. Autistic individuals often appear to be in their own world. They exhibit bizarre behaviors and usually have a secondary disability, such as mental retardation or epilepsy, that further muddles the signs of the disorder. Some, like Mary Grace, suffer from a lesser variation known as Asperger’s disorder and can learn to function in society. Others need round-the-clock care. And most individuals with autism are somewhere in between.
What’s frightening is that scientists don’t know what causes the disease, or why the number of autistic children has spiked so dramatically over the past 20 years. "Research is pointing to a combination of genetic and environmental factors," says Jose Cordero, director of the National Center on Birth Defects and Developmental Disabilities. "Finding the cause is our highest priority."
The explosion in autism affects every corner of society. The increase has stressed social services, and caused government and community providers to scramble to catch up with the needs of a growing disabled population. It’s put a strain on public school systems vying for dollars to support such kids. It’s placed a burden on taxpayers, which will only become greater. The estimated annual cost of autism nationwide is $90 billion, with 90 percent of that amount coming from adult services. And that number is expected to rise to as much as $400 billion over the next 10 years.
It’s also caused tension in the disability advocate community as providers try to find ways to engage autistic people or find them a job as they reach adulthood.
"The adult world presumes kids are ready to go once they leave school," says Sheila Wagner, assistant director of the Emory Autism Center in Atlanta. "Yet people with autism need continued education and support. And there’s not a level of services and options for what they need."
Especially as the autistic population soars.
Claire Dees sensed something was wrong when her son, Blake, was an infant. People would coo at him, and he’d stare off in a different direction. Claire and her husband, Mark, already had two other children. They knew kids loved that kind of attention and that they reacted to it. And their other two children had learned to crawl at six months; Blake had yet to even try at the same age.
SELF PROTECTION: Blake’s autism is so severe that he often must wear mitts and a helmet to protect him, and others, from himself.
Doctors told Claire and Mark that Blake would come around, that he was a typical youngest child, a late bloomer. But Claire knew something wasn’t right. When Blake did begin to crawl, he’d sometimes search for the tiniest speck of dust on the rug and put it in his mouth. Other times, he’d sit on his knees and rock silently with an empty gaze. "He seemed to be a little dull, not real alert," Claire says.
At the age of 2-and-a-half, when Blake had yet to begin talking, he was diagnosed with autism and mental retardation. Nothing had prepared Claire and Mark for a child who was so severely autistic, who lived such a separate life.
They had to watch Blake closely when he was outside to make sure he didn’t pop cigarette butts, fire ants or broken glass into his mouth. They had to apologize to a geneticist after Blake grabbed the doctor’s tie at his throat. They had to call physicians ahead of time to ask them to move the plants in the lobby so Blake wouldn’t eat the leaves.
In elementary school, Blake was so disruptive and destructive that teachers had to strap him to a chair. At home, Claire and Mark had to dress their son in a leotard each day to prevent him from reaching into his diapers to eat his own feces. After he started to lurch at the steering wheel as they drove, they had to purchase a five-point harness to strap him to the car seat.
Because Blake had to be watched constantly, Claire and Mark learned to alternate nights at their daughter’s school play or their son’s basketball games. The attention Blake required meant less time for their other two children. "They understand why, but it’s frustrating for them," Claire says.
But it’s just as frustrating for Claire and Mark. Having an autistic child both binds their marriage and strains it. Going out to eat or see a movie was such a major production that they seldom tried it. The couple took salsa dancing at their church once, but could never join the other couples for a drink after class. And after a sleepless night of restraining Blake from slamming his head on the hardwood floor or into the sheetrock walls, it was too easy to take out their frustrations on one another. They’d yell over nothing or argue over who’s turn it was to take care of him. "It’s hard for us not to be able to do things together," Claire says. "We didn’t take a vacation, the two of us together, for 14 years."
They just wanted to protect their son, prevent him from hurting himself, give him the love a normal child would receive. More than once, it seemed a hopeless battle. One day, Mark was so depressed as he drove Blake home from school that he stopped his car by a cell phone tower near their home in a northern Atlanta suburb. For a few minutes, he sat there and contemplated how much easier it would be for both of them if he took Blake and climbed to the top of the tower and jumped.
Mark finally shook himself, let the thought pass and drove home.
Blake, now 18, still doesn’t speak. He bites and pinches and grabs to communicate. He suffers from an eating disorder known as "pica," which makes him eat non-edible objects. He chews through his father’s shirts, leaving holes the size of a dinner plate. He rips out clumps of his brother’s hair when he gets frustrated. And he bites his mother’s toes — once so hard that she got a staph infection from the chomp.
At night, Claire and Mark place large white mitts and a plastic helmet recommended by his behavioral therapists on Blake to keep him from biting himself or pinching himself so hard that he splits his skin.
MOTHERLY CARE: Blake was taught how to use utensils to feed himself, but often forgets how to do it.
Claire and Mark, both 49, own a property management company, which gives them the financial ability to take care of Blake. They spend about $2,000 a month on their son, on everything from diapers to encasing car windows so he won’t break them to fixing holes he’s made in the walls with his head or fists. And that doesn’t include the cost of the caretakers who stay with Blake during the week.
Claire and Mark know they’re lucky because they can afford to take care of their son at home. Other families must work with what the government offers — on average, families receive $128 a day in aid for a disabled child and there’s a long waiting list to qualify — or try to go at it alone or place their child in a state institution.
For Claire and Mark, institutionalizing Blake isn’t an option. "He’s our child, so he’s our responsibility," Claire says. "Ultimately, we have to be the ones to help him."
Mary Grace refused to take off the plaid dress with a smock picturing a cat.
As a 3-year-old living in South Carolina, she wore it for days and even slept in it at night. Mary Grace would walk across a parking lot with her mother, then suddenly bend down and place her nose close to the asphalt to smell it and rub the rough surface.
The family moved to Georgia when Mary Grace was in elementary school, and that’s when even more signs that something was off-kilter began to surface.
At school, Mary Grace was quiet and well-behaved. She was so exceptionally smart that her teachers regularly relied on her to update them on the latest educational programming she watched on PBS or the Discovery Channel on dinosaurs and amphibians.
But when she closed her books at school and returned home, she unleashed the rage that she’d apparently bottled up during the day. She’d kick her mother, trash her room and pull her younger sister’s hair.
"If her sister breathed, Mary Grace would get upset," her mother, Maureen Mauney, says.
When Maureen talked with school counselors and teachers about her daughter, they looked at her as though she was crazy. After all, Mary Grace had won the Young Georgia Authors’ Writing Competition at the age of 8. Her winning entry was called "Lightning Lucy," a fable about a cowgirl who rides an Aztec-winged serpent god instead of a horse. And she’d clocked an IQ of 138 (the average is around 100).
When Maureen asked why she had so few friends, the counselor said it was because the other kids were way below her intellectual level.
But the bad behavior eventually spilled into the classroom. Mary Grace began to get into fights and even ran away from school. Therapists told her mother not to worry, that Mary Grace was just sensitive and creative and intense.
But by third grade, Mary Grace felt helpless. She knew she was different, and didn’t understand why. While other kids her age played with dolls, Mary Grace would sit out on her window sill at night, thinking about jumping into the air and killing herself. One time, she swallowed a straight pin.
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Finally, at the end of third grade, she was diagnosed with Asperger’s disorder, a high-functioning form of autism. The diagnosis was a relief, simply because it explained her peculiar behaviors. "It was like ‘Oh, now we know what we’re dealing with,’" Maureen says. "It was so hard before that. It was a guessing game."
That summer, Mary Grace began to take Prozac to help her depression. She enrolled in a social skills camp because the cordials that came naturally to most people seemed foreign to her. Mary Grace was taught how to look people in the eye, how to hold a fluid conversation and even how to joke with her parents.
By middle school, there were so many children with autism in Mary Grace’s county that the school system started a program for kids with Asperger’s disorder at her middle school. For Mary Grace, it was her saving grace. She would start each day in a homeroom with other students who had Asperger’s before they ventured to regular classrooms. Whenever she felt she was on the verge of a meltdown, she could return to her homeroom. She could eat lunch there or go to relax.
Her social interactions slowly started to improve and she even began to befriend some of her "normal" classmates. "I saw how these other kids [in her homeroom] were behaving and that made me want to become normal," Mary Grace says. "It was seeing my own behavior in other kids and saying [to myself]: This is how other people see me, good lord."
She developed her own therapy by riding horses at a local horse farm. She also collected rats and hamsters as pets. Learning to care for animals soothed her, and she told her mother not to waste any more money on traditional therapists. So long as she had her pets, her horses and her swing, she would be fine.
It’s tough to find a cure for something when no one knows what causes it.
The chief suspect for causing autism in the minds of many parents and some doctors is Thimerosal, a preservative that contains mercury that was once used in most vaccines. There is substantial anecdotal evidence that young children who appeared normal suddenly developed autism after they received vaccinations.
For every study that seems to suggest autism is linked to high levels of mercury, another one suggests there is no connection. A study from Israel released earlier this month found that autism rates rise as fathers get older. Dads in their 40s, the study said, are six times more likely to have children with autism than men under 30.
The fact is, no one knows for sure. The only given is that, in the last 20 years, something has triggered a disturbing increase in the number of children born with autism.
And with it comes social costs. In Florida, funding for the Agency for Persons with Disabilities (ADP) has increased by $800 million in the last 8 years. While none of that has been earmarked specifically for autism –the agency does not divide its budget amongst disabilities — it allows the agency to provide services for 1,791 autistic children and 608 autistic adults.
But the agency’s $1.3 billion budget isn’t enough to cover everyone. Demand still exceeds supply, leaving 1,721 people with autism on a waitlist for ADP services. And after a recent decision by the Florida legislature to refuse ADP the funding it asked for, the agency will not be able to shorten the waitlist much this year. The ADP says it only has the money to enroll "crisis cases" — autistic children about to age out of foster care, for example — into its system.
"I do see higher expectations than I did 16 years ago," says Nila Benito, vice-chair of the Florida Developmental Disabilities Council and a former staff member at USF’s Center for Autism and Related Disorders (CARD). "However, there still needs to be more resources and attention paid to everyone involved with supporting the needs of individuals with autism and their families."
GIANT STEPS: Mary Grace has learned to integrate herself into society.
Benito, who has two sons with autism, says Florida’s education department is improving its services to the 9,603 children diagnosed with autism in its system, if slowly. "As a mom," she says, "it’s always been hard to get the support my boys need. And that’s the school system. There’s clearly a lot of counties that have extremely dedicated educators that work in a system where the needs of students with significant disabilities are not a priority."
As for the ADP, Benito says it took almost seven years to get her boys off the waitlist. And once they were approved for services or "on the waiver," the system still wasn’t perfect. "I can tell you from experience," she says, "that just because your child is on the waiver, it doesn’t mean he’s going to get what he needs. It’s systemic, it’s not just money. Money’s good, but it’s not the answer."
Luckily, some of the burden is eased by nonprofits like CARD and Lakeland’s Central Florida Autism Institute, and schools like the Pinnacle Academy in Lakewood Ranch, which focuses exclusively on 70 autistic students. In Atlanta, the Emory Autism Center and the Marcus Institute play that role. Since it was founded in 1991, more than 20,000 children with severe disabilities have gone to Marcus for academic classes and behavioral therapy that will hopefully enable them to attend mainstream schools and survive in society.
It’s the place Blake calls home five days a week.
The door from the garage creaks open after dusk. Blake ambles through, flanked by two caregivers who hold him by his elbows. Claire and Mark jump up from the couch and greet their son as he enters the living room. Blake’s damp, dark bangs stick to his ashen forehead. Bruises and scars cover his arms and parts of his face. He softly groans.
"How is he?" Claire asks as she walks to her son, who has the body of an adult and the mind of an infant. As she reaches him, she grabs his elbows as a safety precaution and pecks him on the cheek.
"Good, just a bit tired," a caregiver responds. "He’s been flicking."
"Why don’t we put the helmet and mitts on then," Claire says.
She moves aside as Blake’s dad, Mark, embraces his son. He nuzzles up to Blake’s ear, and in a loud whisper with a "Mr. T" low growl says, "Hey, Blake. I’m gonna git you, boy."
Blake giggles and a wide smile breaks across his face.
It’s not every day that Blake giggles, much less smiles. Some days, he’s agitated and flicks his cheekbone with his fingers until his flesh breaks open and blood trickles down his face. Other days, if he’s really upset and someone tries to quell his self-mutilation, he’ll go after the person.
He doesn’t mean to hurt them, but he can’t help it when he’s feeling bad. Sometimes it’s because of a headache or stomachache, but he can’t talk so he can’t tell his parents what’s wrong. Instead, he groans and destroys anything in his path.
Today, Blake is fairly calm. He spent his day at the Marcus Institute learning to pop popcorn in the microwave and load his own laundry. His education has been an arduous process. It took Blake more than 400 tries to learn how to pull a shirt over his head. He knows how to use a fork, but doesn’t often use it. His parents still have to help him grasp or hold utensils.
Blake’s lessons are geared toward helping him learn to live on his own with assistance. The greatest fear for his parents is that he’ll have no one to care for him when they die. "If something happened to us tomorrow," Claire says, "there would be no choice but to put him in an institutional setting because his needs are so high."
It’s a lofty goal considering Blake requires the help of 10 caregivers each week. Though expensive, they have taken the burden off Mark and Claire. They get him in and out of the car. They take him to a local pond where he’ll feed the ducks. And one of them spends the night with him to help him sleep and make sure he doesn’t hurt himself.
The best times for Blake are when he is in the water. His favorite spot is his hot tub. Blake even eats his breakfast there in the morning before he’s off to school. He can sit in there for hours because the whirling water soothes him. Sometimes, sitting in the water even makes him smile. It always calms him.
Mary Grace presses her stomach against the light blue rug in her bedroom.
Her legs stretch out parallel to her bed and she grasps a No. 2 pencil. One of the Harry Potter books on tape plays in the background. It’s around midnight, but she’s just getting started. She slowly sketches a round head, but decides it doesn’t match the body so she erases it and starts all over. She’s at work on an illustrated story she calls "Sessions with Charity." One of the characters, Lightning Catherine O’Brian, suffers from a mild form of Asperger’s — a character that represents Mary Grace’s complicated and brilliant mind.
When her eyelids start to flutter an hour later, she puts down her pencil and crawls into bed.
Though Mary Grace no longer throws tantrums, kicks her mother or runs away from school, she still gets flustered when she’s with other people. She’s keenly aware that she’s different. But she’s also determined to fit in with society. She wants to go to Georgia State and live in Atlanta but doesn’t want to get a driver’s license because she’s afraid she won’t be able to find her way around downtown.
When she starts to think of all this, her head spins, and sometimes it seems impossible to sort it all out. But she understands that she just needs silence and a little time to figure things out.
That’s when she ventures to her back yard, sits on the yellow seat and begins to swing.