Unknowns abound at UF autism talks

Published: Saturday, January 17, 2004 at 6:01 a.m.
Last Modified: Saturday, January 17, 2004 at 1:03 a.m.
They came in groups of one or two, armed with notebooks, until more than 100 parents and teachers, college students and professionals were gathered in the auditorium of the McKnight Brain Institute at the University of Florida on Friday for the fifth annual conference on autism.
They came with questions for the seven-member panel, and each question revealed a glimpse of the challenges posed by living with an autistic child.
"How can I take my 4-year-old niece to Disney World?" one woman asked, knowing that any change in routine could start a meltdown.
Dr. Bryan King, director of child and adolescent services at Dartmouth College in New Hampshire, warned that for an autistic child, the excitement and change encountered at Disney would make it far from the happiest place on earth.
Most children with autism have tremendous difficulty learning to engage in the give-and-take of everyday human interaction, King and the other panelists emphasized. That makes it particularly difficult for a parent, teacher or others to connect with them.
Autism is a complex developmental disability that typically appears during the first three years of life. The result of a neurological disorder that affects the functioning of the brain, autism and its associated behaviors have been estimated to occur in as many as two to six in 1,000 individuals, according to the Centers for Disease Control. That means as many as 1.5 million Americans today are living with some form of autism.
Assessing the incidence of autism is difficult, although most groups that track its occurrence would agree that the rate is climbing.
"It's a complicated question," Ronita Wisniewski of the Autism Society of America said Friday. "We don't really have good figures from any source. The latest estimate from the Department of Health and Human Services is that one in every 250 births involves an autism spectrum disorder."
Autism is four times more prevalent in boys than girls and knows no racial, ethnic or social boundaries. And with no unifying theory for what causes autism, there are myriad of approaches to therapy.
One mother of two autistic boys said that just eating a peanut butter-filled cookie will trigger a crying jag in her son that can last all night. She wanted to know what the link was between diet and behavior.
Jennifer Elder, a UF researcher who studies the father-child communication in homes with autistic children, said that many of these youngsters have a very restrictive food repertoire - eating only one kind of noodles, for example - and researchers don't conclusively know why.
Nor do they understand why some diets, such as one restricting the gluten and casein found in grains and milk products, seem to help some children.
UF researchers are compiling data on a small experimental study that matched a group of autistic children on a gluten-free, casein-free (GFCF) diet against a group on a placebo diet.
"Our initial findings show no significant differences, although some children (on the special diet) responded better in some areas," Elder indicated.
Dr. Charles Williams pointed to Dr. Robert Cade's studies of the GFCF diet at UF, which he said have attracted an international following of families with autistic children.
"It's not uncommon for these families to go all out, and there will be some apparent responders," Williams said. "But over five years, only a minority will sustain the effort, so I'm not sure whether any of this is really helpful."
Methodical studies of all the various dietary supplements and behavioral interventions now being applied in cases of autism are sorely needed, the panelists agreed.
In testing any new approach, "as parents, you must weigh the expense, the time, the inconvenience involved and make a decision to suit your family," Elder said.
FYI: Autism resources
  • Autism Society of America, on the Web at www.autism-society.org
  • University of Florida's Autism Program, directed by Dr. Jodi Star. Call 352-392-8373 for more information.
  • CARD UF: The Center for Autism and Related Disabilities provides resources for families. Call 846-2761 or (800) 754-5891 or visit the Web site at www.card.ufl.edu
  • Reader comments posted to this article may be published in our print edition. All rights reserved. This copyrighted material may not be re-published without permission. Links are encouraged.

    Comments are currently unavailable on this article

    ▲ Return to Top