Cases of child autism have increased 850 percent in Missouri

The smell of burning flesh made Tammila Miller turn around. The Grassy, Mo., mom was on the phone in the kitchen waiting for her oven to preheat. She whirled around to find her autistic son, Michael, gripping the hot baking rack in the oven.

Michael, now 7 years old, suffered third-degree burns on his palms but never cried or showed any sign of pain during the ordeal.

There are more than 2,800 children in Missouri diagnosed by schools as autistic, an 850 percent increase since 1991. That's 2,800 children who may, for no apparent reason, bolt toward a busy highway. That's 2,800 children who may get so frustrated at their inability to communicate that they punch themselves in the face or bang their heads against a wall.

The skyrocketing numbers of autistic children across the United States are starting to test society's ability to treat them. The demand for services has outpaced the supply of therapists as parents waste critical months on a waiting list just to get diagnosed.

Autistic children wait a year to have their first music therapy lesson because there is only one part-time music therapist in a 100-mile region. Schools are having to pay more to educate autistic children. Parents are going broke because insurance companies refuse to pay for services.

The United States spends $90 billion per year to provide care for the country's 1.5 million autistic children and adults. The Autism Society of America estimates that cost could balloon to $200 billion to $400 billion by 2013.

To make matters worse, scientific research offers conflicting and inconclusive explanations as to why autism is growing more like an infectious disease than a genetic neurological disorder.

The rate of children being diagnosed with autism is now as high as one in 166. Ten years ago it was one in 2,500, according to the American Academy of Pediatrics and the Centers for Disease Control and Prevention.

The actual number of autistic Missourians -- children and adults -- is unknown because some children diagnosed by medical authorities as autistic aren't recognized as such by the Missouri Department of Elementary and Secondary Education -- the only government-sanctioned census of autistic children in the state.

DESE currently identifies 2,801 children between the ages of 3 and 21 as autistic, up from 294 children in 1991. Some parents believe there are actually many more.

Whatever the numbers are, the medical establishment hasn't been able to agree on the cause of the huge increase over the past decade.

"Before too long it's going to become a public health issue," said Dr. David Crowe, a Cape Girardeau orthodontist whose son was diagnosed with autism in 1985. "It's like a ticking time bomb, because the cost of providing the needed care and therapy is astronomical."

National explosion

Other states are seeing similar explosions in the number of children diagnosed as autistic. The Autism Society of America, an advocacy organization in Bethesda, Md., estimates that every day 50 children in the United States are diagnosed with a form of autism.

"We are seeing more diagnoses, and there doesn't seem to be one good reason why," said Julia Kaufmann, director of children's services with the Missouri Department of Mental Health. "It could be a number of things. We're open to looking at all causes."

The Department of Mental Health, in conjunction with lawmakers, state agencies and universities, has formed the Missouri Autism Research and Response Agenda to look at the possible causes of autism and improve support services for individuals with the disorder. The agenda group is putting together a statewide database with information on autism to aid research in the growing field.

The words "epidemic" and "autism" are being paired in hushed tones in the country's medical community.

Dr. Mark Geier, a Maryland geneticist and vaccinologist, and his research partner and son, David Geier, estimate the lifetime cost of caring for an autistic person at between $5 million and $10 million.

"It's the greatest catastrophe to fall on this country," said David Geier. "We've looked at it backwards, forwards, upside down. It won't go away. This thing is absolutely going to damage the country."

The father-son team are part of a growing number of scientists, physicians and parents who believe the increase in autism during the 1990s was caused by the mercury-containing preservative thimerosal, which was added to vaccines 70 years ago.

During the past decade, the amount of thimerosal children received increased as the United States expanded its immunization program. At the same time, the country's autism population began to grow significantly.

Autism origins

The word autism is derived from the Greek word "autos," which means self. It was first defined as a specific condition in 1943.

Originally, the medical community believed autism to be a psychological disturbance caused by uncaring, detached mothers. Those suffering from it often were institutionalized. In the 1960s, a new theory developed that labeled autism as a biological problem. Recent research classifies it as a genetic disorder.

Autism is referred to as a spectrum disorder because of the wide range of characteristics and effects it can have on people. Signs usually appear by age 3. It's more prevalent in boys than girls.

Although diagnoses and definitions may vary from one physician to another, the autism spectrum is generally broken down into five different categories, which all fall under the general term pervasive developmental disorder:

autism

Asperger's syndrome

childhood disintegrative disorder

Rett's disorder

pervasive developmental disorder -- not otherwise specified

The "not otherwise specified" category includes those with autism symptoms that do not fall clearly into the other four categories.

Autism's only predictable symptom is unpredictability. Symptoms are different with every child.

Autistic children often have a high tolerance for pain but can be overly sensitive to certain lights, odors, sounds and textures. These sensitivities have been a big adjustment for Karen Manning of Perryville, Mo., whose son, Darin, was diagnosed as autistic at age 4.

The Mannings no longer take family photos. To Darin, the camera's flash looks more like the first daylight after a long stay in a black room.

Karen Manning no longer dresses her son in blue jeans. To Darin, the denim feels like coarse sandpaper, causing him to curl up and cry.

"It's a feeling like you've been burglarized, like somebody came in and stole my son's mind," Manning said.

In addition to sensory sensitivity, autistic children may not have a sense of danger or feel pain. They may have a hard time staying focused and may flap their hands or engage in other repetitive movements.

Communication block

But the lack of communication and social skills are perhaps the most telltale characteristics of autism.

Some autistic children, like Nicholas Clark of Parma, Mo., stop speaking entirely.

Nicholas, now 7 years old, developed normally until age 2, when he began losing his vocabulary and exhibiting other signs of autism. Eventually, he regressed into complete silence.

"We didn't know if he would ever talk," said Melinda Clark, Nicholas' mother. "He's in his own world, and we have to give him as much incentive as possible to come into our world."

Poor voluntary control of speech muscles, a condition called verbal apraxia, is common among autistic children, says Dr. Carol Ludwig, a Jackson speech pathologist.

"Being autistic is like hearing a foreign language," Ludwig said. "The words don't make any sense."

Within each of the autism disorders, symptoms and degree can range from mild to severe. Doctors look for specific symptoms in communication and social impairments to diagnose autism. Doctors look for an inability to make friends, a lack of eye contact, an inability to express spontaneous joy and a failure to connect emotionally with others.

Autism is widely regarded as a genetic disorder because of its heritability; however, most researchers agree that there is no single cause. Many autistic people also have genetic syndromes or chromosome disorders, but there's little scientific explanation for how or why autism occurs.

The April issue of the American Journal of Psychiatry includes a new study identifying two variants of a single gene that may raise a child's risk of autism by twofold or more, the Associated Press reported.

Those variants, however, aren't enough to cause autism by themselves. Researchers involved in the new study believe it takes between five and 10 genes working together to produce autism.

Similar genetic research is taking place at the Autism Center and Clinic at the University of Missouri-Columbia. Dr. Judith Miles, a geneticist and director of the autism center, has been bombarded by an increase in patients.

"Certainly we're seeing an explosion in the number of cases," Miles said. "We know that autism is highly genetic, but genes don't have epidemics, so that's why people are looking at environmental factors, such as vaccines."

Staff writer Bob Miller contributed to this report.

cclark@semissourian.com

335-6611, extension 128

Characteristics of an autistic child

Has difficulty mixing with other children

Acts as if deaf, visually impaired or blind

Resists learning

Shows no fear of real danger

Resists changes in routine

Lacks use of gestures

Laughs inappropriately

Is not cuddly

Engages in physical overactivity

Makes little eye contact

Makes inappropriate attachments to objects

Spins objects

Engages in sustained odd play

Has a stand-offish manner

Source: The Missouri Families for Effective Treatment of Autism, 2002