Cause of Autism Remains Unknown, More Cases Diagnosed

St. Patrick's Cathedral was particularly quiet and solemn just after the consecration at a recent Sunday morning Mass when Scott Gammage became aware that his 11-year-old son, Nicolas, was growing restless.

I decided it was time to go, and we were slipping out the back when Nicolas suddenly turned around, waved real big and shouted, very clearly,Bye, God! See you tomorrow!''

The outburst surprised parishioners, and some chuckled, but Gammage says most of them were probably wondering why a child as old as Nicolas was not better behaved in church.

Gammage no longer asks why.

He and his wife, Alison Blass, have been dealing with unusual outbursts from their son ever since Nicolas finally started talking a little, when he was almost 5 years old - two years after autism was diagnosed.

Autism is a neurologically based developmental disorder that affects verbal, social, emotional and motor skills. It is a spectrum disorder, meaning that there are various levels of impairment. Some children with autism seldom or never speak. Most seem focused inward, unaware of their surroundings. Some have seizures and/or tantrums. They may be aggressive and destroy property or injure themselves. Often they repetitively rock their bodies back and forth or flap their arms or rake their knuckles across their foreheads.

Nicolas ``doesn't do conversation,'' his father says, but he often responds to direct questions with appropriate one- or two-word answers. He has calluses on his knuckles from raking them across his forehead. On a recent visit, he was sulky and angry because he wanted to go to the store and buy a balloon. But then he volunteered an angelic smile and a stiff-armed hug when this reporter was leaving.

We always knew Nicolas would be developmentally delayed because he was a preemie, but we were not prepared for him to start running around the house, knocking things over and tearing the blinds off, like a little tornado, before he could put two words together,'' Gammage says.Our first concern was how to keep him from destroying the house and hurting himself.''

Nicolas suffered a stroke before he was born, when he weighed just 2 pounds, 5 ounces. He underwent brain surgery when he was six days old and spent the first three months of life in a neonatal intensive care unit.

Still, no one knows what caused autism.

``For me it's more about what to do, not why. What needs to happen for him?'' says Gammage, president of the Autism Society of Greater Tarrant County, which has about 800 families on its mailing list.

Debate over the cause or causes of autism has heated up in recent months with a growing awareness that the incidence rate is increasing.

Estimates of the prevalency rate for autism range from 1 in 1,000 to 1 in 250 live births, according to the 2003 report to Congress from the Interagency Autism Coordinating Committee, which oversees autism research funded by the National Institutes of Health.

Recently there have been reports of increases in the numbers of children receiving a diagnosis of autism or receiving public services for autism,'' the report states.Data from California shows that autism has increased substantially among children in that state, from 44 cases per 100,000 in 1980 to 208 cases per 100,000 in 1994.''

Experts agree that one or more genes are likely involved, along with some environmental factor such as a virus, toxin or trauma at or near birth.

Many parents blame thimerosal, the mercury-based preservative used in some vaccines, but ``current scientific evidence does not support the hypothesis that measles-mumps-rubella (MMR) vaccine or any combination of vaccines causes the development of any type of autism,'' says information from the Autism Information Center, maintained by the CDC.

Possible links have been extensively reviewed in numerous studies, including, most recently, a study that involved all 537,303 children born in Denmark from January 1991 through December 1998.

That data, published in the September 2003 issue of ``Pediatrics,'' concluded there was no association between the age at time of vaccination, the amount of time that had passed since vaccination or the date of vaccination and the development of any autistic disorder. A study of more than 140,000 children in the United States published in the December issue of the same journal also found little evidence to support a link.

``The data is just not there to support any connection between immunizations and the risk of autism,'' says Dr. Joyce Mauk, medical director of the Fort Worth Child Study Center, where about one-fourth of the 5,000 children seen each year have autism, often in conjunction with other disabilities such as Down syndrome or hyperactivity disorder.

Mauk attributes a big part of the increase to changes in diagnostic methods and improved identification of children with autism but says there is probably a real increase in numbers as well, and no one knows why.

With more treatment and services available, people are more anxious to get a diagnosis so they can get help,'' the doctor says.When I was in training, autism was the worst diagnosis you could get because there was nothing to help it. It is more accepted now that we have better medications and therapy for it.''

Although there are still no medications to directly treat autism, there are many medications to treat the troubling symptoms that co-exist with it, such as self-injurious, disruptive and aggressive behavior.

The antidepressants, stimulants, tranquilizers and other psychoactive drugs available today for use by children are far superior to those approved for children even five years ago, Mauk says.

In addition, many autistic children respond to applied behavior analysis, a type of reinforcement or conditioning treatment in which good behavior is immediately and consistently rewarded.

The idea with ABA is to find the buttons that work for an individual child and push the right ones to improve learning,'' Mauk says.An autistic child might not respond to promises to go to the park next Saturday but might respond to lots of kisses, immediately. It's very individual - which child responds to what.''

The definition of autism is broader than in the past.

``More are included under the umbrella of what we call pervasive developmental disorders, which include very severe autism as well as those with Asperger disorder on the other end of the spectrum,'' says Mauk, a developmental pediatrician.

Children with Asperger are much higher-functioning and usually go unnoticed until they reach a school setting and stand out as a little odd among others their age. In particular, they may use stilted language and act like little professors, lecturing on everything they know about a particular toy rather than playing with it.

True savants, who are gifted with outstanding ability in a particular area, such as music or art, or who can remember what page a particular name is on in a phone directory after paging through the directory once, are very, very rare, but it's not so unusual for someone with autism to have a splinter skill that seems unusually superior, especially in contrast to the same child's other abilities, Mauk says.

In response to growing public-health concerns regarding rising rates of autism, the U.S. Department of Health and Human Services and the U.S. Department of Education will host a joint summit to develop a national agenda on autism Nov. 19-20 in Washington, D.C.

The summit will focus on scientific research, early diagnosis, causes, treatment and providing autism services throughout the lifespan of all who have autism.

A recent cover story in ``Newsweek,'' which explored why four out of five autistic children are male, upset a lot of people in the autism community, Gammage says.

The article hinges on a new book, The Essential Difference'' by Simon Baron-Cohen (Perseus Publishing, $26), which proposes that autism is an extreme version of normalmale intelligence,'' which relies primarily on systemizing.

It makes autism sound like a nuisance,'' Gammage says.We are talking about a great number of kids who never, ever talk and maybe only eat two foods and pull their hair out. Some kids just sit in a corner. Sometimes the media wants to show a 3-year-old playing a violin, and that's great, but he may not be able to talk. He may not be able to see or use the bathroom by himself - but he can play the violin or the piano like a pro or remember every phone number he has ever heard. He may tell you immediately what 580 times 67 is but not be able to dress himself. All our kids are different.''

Nicolas has attended five Fort Worth schools and currently is enrolled at Boulevard Heights, a special-education program for children who are mentally retarded or autistic and also have severe behavioral problems.

``The thing about my son is, he has taught me more than I will ever be able to teach him. He's got a lot to offer. Just the way he gets up and gets through the day with very few people understanding him is amazing. He's really such a sweet kid, but he can throw a wing-ding fit anywhere, and he may do it at Kroger because the air conditioner comes on suddenly or a light starts to flicker, and he will fall out, and it just looks terrible. Something sets him off, and I usually don't know what it is. Nothing seems a big problem to me now. Life is simple.''

Is Gammage hopeful about the future?

Hope comes and goes,'' he says.I am fully aware my wife and I will be responsible for our son for a long, long time. Some people with autism live independently beautifully, but the majority have difficulties day to day.'' Carolyn Poirot, (817) 390-7687 cpoirot@star-telegram.com

The five most common concerns parents describe before diagnosis of autism, according to a survey by Families for Early Autism Treatment, include:

1. Child lacks speech and/or had words and lost them.

2. Child seems deaf.

3. Child does not make eye contact with parent or caregiver.

4. Child has unusual behaviors, including severe tantrums. The child may also be self-injurious and difficult to control and may engage in self-stimulation.

5. Child ignores or does not play with other children. Source: Association for Science in Autism Treatment.

There are many Web sites dealing with autism. Among the most helpful are the Association for Science in Autism Treatment (www.asatonline.org), Autistic Kids (www.autistickids.org) and the Centers for Disease Control and Prevention (www.cdc.gov).

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c.2003 Fort Worth Star-Telegram