Autism is on the rise in America.
The federal government says autism strikes one in every 166 children, but a movement that started in the Northwest says contrary to popular belief, autism can be cured, not just treated.
At three-and-a-half, Maisie Glock of Woodinville acts like a normal child.
To her parents, that’s a miracle.
You’ll understand why when you learn about their heart-wrenching journey and the controversial new treatment they believe saved their daughter.
Until age one, Maisie hit every developmental milestone, but after one, her parents noticed a regression. She lost the dozen words she knew, she lost interest in her big sister, the family cat – nearly everything.
She liked to go to her room, turn off the lights and just sit there in the dark.
“I was really worried. I thought there something horribly wrong,” said Melanie Glock, her mother.
A stack of medical records is evidence of a mother’s search for answers. Some doctors said nothing was wrong, but Melanie didn’t believe it.
A test at Children’s Hospital confirmed that Maisie didn’t play or pretend like most 2-year-olds.
Finally, her parents got the diagnosis they suspected and feared: autism.
“We were told at the time… her only hope and best outcome would be living in a group and having a menial labor job bagging groceries,” said Melanie.
Melanie could have been content with Maisie’s educational therapy, but she is the proactive type, so she researched everything she could about autism and discovered a little-known movement that started in the Northwest called DAN – “Defeat Autism Now” – which believes autism can be permanently cured.
The key is what goes into Maisie’s body and what should come out.
What goes in are foods without wheat or dairy, and mega doses of vitamin B6 and supplements.
“Wheat-free, gluten-free dairy, egg, nut, soy-free chicken nuggets,” said Melanie.
What comes out are heavy metals through detoxification or chelation therapy.
“The first week that we had her on the diet, she started talking. It was amazing,” said Melanie. “And all of a sudden, she started playing with her sister… and she started chasing the cat around the house, like she had when she was a baby.”
Six months later, the test results astonished Maisie’s parents. She no longer was autistic.
But is it a miracle cure for autism?
The University of Washington’s Autism Research Center declined comment.
Dr. Charles Cowan, a developmental pediatrician at Children’s Hospital, says there haven’t been good studies on the “Defeat Autism Now” treatments. He says heavy metal detoxification is risky and he worries that families who do the DAN treatments won’t do the more difficult or expensive conventional educational treatments.
He doesn’t believe it’s a magic bullet.
“People like to find easy, relatively simple solutions to difficult problems. I believe it’s human nature,” he said.
But when we gathered other families whose kids are on the DAN treatments, some said they have seen huge improvements.
“Within two weeks, I was just sure that the diet was making a pretty big difference,” said Amy Ohta.
“Dramatically significant for us,” said Signe Beck.
Others saw little or no change.
So, was Maisie’s recovery the result of only the DAN diet and detoxification or was she barely on the autism spectrum to begin with?
Her parents have no doubt, but whatever you believe, one thing is certain: What many parents want, more than anything, is hope.
Only a few doctors in the Seattle area acknowledge the DAN movement. Mainstream autism experts are at best skeptical. They often point to the “placebo effect,” meaning if you believe something works, then it’ll seem to work, but that is no proof.
Risperdal, an anti-psychotic drug, has just been approved by the Food and Drug Administration to treat the symptoms of autism in children and adolescents ages 5 to 16.
It’s the first time the FDA has approved any drug to treat behaviors such as aggression, deliberate self-injury and severe temper tantrums associated with autism in children. [1001 Great Ideas for Teaching and Raising Children with Autism Spectrum Disorders]
“This approval should benefit many autistic children as well as their parents and caregivers,” said Dr. Steven Galson, director of the FDA’s Center for Drug Evaluation and Research. He calls Risperdal “a welcome addition” with “an appropriate risk-benefit profile when tested in children.”
According to Peter Bell, president and chief executive of Cure Autism Now, a national organization committed to accelerating the pace of autism research, the approval is “an extremely positive sign.”
A call for caution
It signals, Bell said, that the pharmaceutical industry is looking at autism as a future market.
“Risperdal is not going to cure every child, and it’s not going be appropriate for all,” Bell said, “but when used appropriately it could make a significant difference in a child’s life.”
But others are sounding more cautious notes.
Some doctors warn that the drug should be used only after other treatments are tried that don’t involve medication. And the National Autism Association, an advocacy group for families of autistic children, has serious concerns about Risperdal.
Wendy Fournier, the association’s president, said medications such as Risperdal mask symptoms. She likened its use to prescribing pills for a headache without addressing the cause of the headache.
The association is particularly concerned about the side effects of Risperdal, which can include drowsiness, fatigue, constipation and weight gain. There also are rare reactions, such as extreme weight gain, the seeping of a milklike substance from nipples in both girls and boys, and a neurological disorder causing involuntary movements, which according to the drug manufacturer can sometimes be permanent.
“The choices parents of autistic children have to make regarding medications are very difficult and very important. We don’t fault any parents for doing what they need to do for their kids. But this particular drug appears to have some very serious side effects. It’s a nightmare,” said Rita Shreffler, executive director of the association.
Risperdal, which is manufactured by Janssen, a subsidiary of Johnson & Johnson, has been around for more than a decade. It’s been used since 1993 to treat adults with schizophrenia and since 2003 to treat adults with bipolar disorder. The drug exceeded $3 billion in sales in 2005.
The FDA’s new approval for the use of Risperdal for autistic children comes after two eight-week placebo-controlled trials in 156 patients ages 5 to 16, 90 percent of whom were ages 5 to 12.
Autism is a neurodevelopmental disorder that usually begins before age 3. It manifests itself in a variety of ways, which may include impaired social interaction; diminished communication skills; rigid, repetitive patterns of behavior and self-abuse. The cause is not known, and there is no known cure. According to the association, it affects 1 in 166 children. Others say that number is more like 1 in 250 and that it depends on how broadly one defines autism. Risperdal will do nothing to eliminate the underlying condition, doctors say.
Dr. Andrew Adesman, chief of developmental and behavioral pediatrics at Schneider Children’s Hospital in New Hyde Park, agrees medication should not be part of any initial treatment plan for autistic children. [Let Me Hear Your Voice: A Family’s Triumph over Autism]
“Far and away, the interest is in avoiding medications with this group if possible,” Adesman said. “There is a concern here that people will reach too quickly for the drug and not provide other treatment services. Risperdal should be used reservedly and not as the first line of treatment.”
Intervening to thwart injury
He said, however, if intervention without medication is not successful in changing the child’s behavior and if the child is doing such things as banging his head or biting himself, then “maybe there is a place for pharmacologic intervention.” It has to be “a balanced approach,” Adesman said.
Adesman said doctors should have a “healthy respect” for the side effects of Risperdal, but, he added, the severe side effects are rare. He said that when a child’s behavior does pose a threat to himself or others, people should not focus on the side effects while ignoring the benefits of the medication.
“These are heart-wrenching cases, and you want to help in any way possible,” Adesman said, “but you have to avoid the temptation to reach for what somebody sees as an easy answer.”
The association’s Shreffler said her worry is that some doctors will give in to that temptation. “The scary possibility is that since the FDA has said it’s OK to use with children, doctors across the country may well say ‘We’ll just try this and see what happens,'” she said.
“It’s frightening,” she added, “because a lot of these kids are getting better through treatments [without drugs] that address what’s underlying these behaviors rather than masking them with psychotropic drugs.”