Parker Beck, now 5, seemed normal when he was born, say his parents, Victoria and Gary Beck of New Hampshire, who run an educational-products business out of their home. He grew, learned a few words, did all the usual “toddler things.”
Then, at 15 months, he suddenly stopped speaking. He developed chronic diarrhea. Most bizarrely, he began spinning in circles.
He had brain scans, allergy assessments, blood work. The Becks suspected autism, a disorder once deemed rare but now known to be common, affecting 1 to 2 in every 1,000 people.
But first they needed to rule out a digestive disorder, because of the diarrhea. So Parker had an endoscopy, a test for which he was given Secretin, a drug approved to help diagnose pancreatic cancer.
Afterward, he began speaking again and had “incredible leaps of development,” says his mom, whose scientific sleuthing — all done on her own — rivals that in the film, “Lorenzo”s Oil,” the 1992 film in which parents search for a treatment for a son with a rare genetic disease.
Was it the Secretin that helped Parker Beck? The Becks began begging researchers to find out. They spread the word to other parents, read medical books, and even wrote a book.
Soon, the Internet crackled with questions from parents, like Eileen and Sean Martin of Salisbury, who are 31 and spend five hours a day on line seeking help for their two autistic children.
Recently, after a story about Secretin aired on national TV, the Becks got 800 calls in two days and thousands of letters.
“I can’t answer them,” Victoria says. “I’m a regular mom with two kids.”
But she’s also at the center of a maelstrom in the desperate world of autism.
Years ago, autism — a developmental disorder characterized by language problems, social withdrawal, learning disabilities and repetitive behavior — was presumed to be caused by bad mothering.
Now, researchers think the disorder — which affects 400,000 Americans, four times as many males as females — may be linked to a complex array of problems, including defects in anywhere from two to seven genes, environmental factors like viruses, exposure to chemicals or vaccines, an autoimmune abnormality or some combination of these.
Some children develop a type of autism if they get an extra piece of chromosome 15 from their mothers, but not an extra piece from their fathers, says Dr. Edwin Cook, director of developmental neuroscience at the University of Chicago.
Autistic children are not retarded; in fact, autism can strike people of normal or high intelligence, says Marie Bristol-Power, a specialist at the National Institute of Child Health and Human Development in Bethesda, Md.
It affects several areas of the brain, including the cerebellum, which helps maintain attention; the amygdala, which is important for memory and emotions; and the hippocampus, a crucial component in memory.
Though some children aren’t diagnosed until age three — and some, like Parker Beck, develop language and other skills only to lose them — autopsy studies suggest the initial damage may occur before birth, before the 30th week of pregnancy, possibly preventing key brain areas from maturing normally.
Even babies who appear normal at birth may not be, say researchers who’ve looked at videotapes of first-birthday parties of kids later diagnosed with autism and found subtle clues that others missed — poor eye contact, or a child not reaching to be picked up or not recognizing a family member.
Those who think a virus is the cause note that years ago, before vaccines dramatically reduced the incidence of rubella (German measles), autism rates were high among children born to women who had rubella during pregnancy.
But some people blame the vaccines themselves. Parker Beck’s cognitive skills regressed soon after his immunization at 15 months against measles, mumps and rubella, his mother says.
So far, there’s “no strong scientific evidence that would cause you to say there’s a link” between autism and vaccines, “but there are enough scientific questions remaining that you also cannot say there is none,” says Kathleen Stratton, a pharmacologist at the Institute of Medicine in Washington who has held workshops on the issue.
There is no cure for autism. But 30 years of research supports the efficacy of applied behavioral analysis, a painstaking method by which a tutor teaches a child one skill at a time. To learn how to wash his hands, for instance, a child is taught to pick up the soap, turn on the water, rub his hands together, one step at a time, a process that can take weeks.
And drugs, especially antidepressants known as SSRIs or selective serotonin re-uptake inhibitors, can also help, especially in children and adults who are anxious and frustrated.
And earlier this year, researchers showed an anti-psychotic drug called Risperidone reduced aggressiveness in autistic adults. Trials are now under way to see if it works in children, too.
Some researchers think vitamin B6 supplements may also help.
But the big buzz is over Secretin, a hormone made by Ferring Pharmaceuticals in Tarrytown, N.Y. Because it is FDA-approved — as a single dose to help diagnose pancreatic problems — it is not illegal for doctors to prescribe it “off-label” for other purposes. And many do, with desperate parents and willing doctors often hooking up through the Internet.
By Victoria Beck’s estimate, 1,000 autistic kids have been given Secretin, many more than once.
In fact, there’s been such a run on the drug that the manufacturer says it will be in “short supply” into 1999. (The Becks are seeking a “new use” patent for Secretin and plan to donate proceeds to research.)
The child health institute has received so many questions it has posted a statement on the web (www.nih.gov/nichd) — saying it has no position on Secretin because there’s so little data.
In fact, the only published research was a report in January by the University of Maryland researchers who treated Parker Beck. They found that Secretin did appear linked to a “dramatic improvement” in behavior, eye contact, language, and alertness in Parker and in two other children.
That’s not exactly overwhelming evidence, and even Victoria Beck guesses that Secretin may help less than 50 percent of the time.
There’s no obvious reason why a drug that boosts pancreatic juices might combat autism, although the “gut-brain” theory of autism suggests a link between cognitive and digestive problems. Nor is it clear whether Secretin has bad side effects, though none have surfaced so far.
So it’s no wonder that some families, like the Martins of Salisbury, remain “wary” about giving Secretin to their autistic children. And others, like Joan Fallon, a 39-year-old Marshfield woman who has 36-year-old twin brothers with autism, worry about Secretin”s safety and efficacy in autistic adults.
The answers will only come with clinical research, and several researchers, including psychiatrist Cook of Chicago, are about to begin careful placebo-controlled, double-blind studies.
“I understand the desperation fueled by this disorder, . . . and that desperation should fuel our devotion to developing cures that are proven,” says Cook, who had an autistic brother and has spent his career trying to understand the disease. But until those data are in, “it is cruel to wave the flag of cure before there’s more certainty.”
True, but that could be months or years. In the meantime, the families of autistic patients can at least raise the issue with doctors — and learn all they can from those who’ve tried it.
- National Alliance for Autism Research, 1-888-777-6227 (On the web, www.naar.org)
- Autism Society of America, 1-800-328-8476 (On the web, www.autism-society.org/
- Cure Autism Now, 1-213-549 0500. (CAN has started a gene bank for families with more than one member affected by autism. If you want to participate, call this number.) On the web, www.canfoundation.org.
- Autism Research Institute, 1-619-281-7165, which has compiled information on Secretin.
- The Giving Back Fund, which manages the Doug Flutie, Jr. Foundation for Autism, 1-617-556-2820. (This fund, established by the Buffalo Bills and former Boston College quarterback whose son is afflicted, helps low income families of children with autism.)
- Language and Cognitive Development Center in Boston, a school for children with autism, 1-617-522-5434 or 1-800-218 5232. (web site: www.millermethod.org)
- National Institute of Child Health and Human Development, 1-800-370-2943
- National Autism Hotline, 1-304-525-8014.
- National Organization for Rare Disorders, 1-800-999-6673. (web site, www.rarediseases.org)
- The Option Institute, 1-800-714-2779 or on the web, www.option.org
“Unlocking the Potential of Secretin,” a book by Gary and Victoria Beck, is available for $15 through the Autism Research Institute. Proceeds go to the institute. Send check to: Autism Research Institute, 4182 Adams Ave., San Diego, CA 92116, or fax credit card order to: 619-563-6840.