Maine parents embrace controversial treatment model for autistic children
By Meg Haskell
Riley was a healthy baby and a cheerful, active toddler. At 18 months, he trundled purposefully from one room to another, played with his bright-colored toys, used an inventive vocabulary and engaged winningly with any and all.
But sometime before his second birthday, he changed.
“He stopped making eye contact with us,” Riley’s mother, Laura Plourde, recalled recently. “He stopped talking and waving. He wouldn’t smile.”
He began sitting still for long stretches, rolling his fingers around in his lap. He began making “finger puppets” – Plourde demonstrated, moving her own hands slowly in front of her face as her fingers wiggled madly. Riley, she said, would gaze at his finger puppets endlessly, with no sign of pleasure or even interest.
His play activity deteriorated to compulsively lining up his toys. He became increasingly withdrawn and unresponsive to his parents, his older brother, other family members and friends.
The family’s pediatrician examined the little boy and initially pronounced him normal. But in response to Plourde’s continued concerns, when Riley was about 3 years old the doctor made a referral to a children’s mental health provider, who diagnosed him with autism.
“I almost fell off my chair,” Plourde said. “I decided the minute I walked out of that office that Riley might be autistic that day, but he wasn’t going to stay that way.”
The DAN! approach
Children with autism appear to live in a world of their own, withdrawn from normal activities and interactions with their families. Long regarded as a mysterious disorder with no known cause and no known cure, autism and a range of related conditions are typically considered lifetime disorders, best treated with behavioral therapies, special educational interventions, and, often, psychoactive medications.
But Plourde, who lives in Cumberland and has family in the Bangor area, is among a number of concerned Maine parents who are challenging this mainstream view.
They believe – fiercely, passionately, and in the face of conventional medical wisdom – that their children’s neurological symptoms are triggered by physiologic assaults to their small systems in the form of antibiotics, vaccines, fluoridated water and heavy-metal contaminants such as mercury, lead and uranium. They believe related digestive difficulties make the problem worse.
And despite skepticism, negativity and outright hostility from the medical mainstream, they believe their children can recover.
They subscribe to a treatment system known as Defeat Autism Now! – or DAN! – that offers them the hope of a cure. Mainstream doctors and others in the field say it’s a false hope – fraudulent, even – but parents like Laura Plourde say it’s a gamble they’re willing to take.
According to the Web site of the Autism Research Institute, the DAN! approach grew out of a 1995 meeting in Dallas of medical specialists and scientists from the United States and Europe who shared a passionate interest in autism.
Their DAN! protocols are based on the premise that autism develops in individuals with a genetically heightened intolerance of certain foods and common environmental toxins.
In these individuals, the theory suggests, prenatal exposure through the mother’s diet, medications, dental fillings and other sources, combined with the onslaught of vaccines, antibiotics and other substances commonly experienced by babies and young children, set off a self-perpetuating metabolic storm. The result is the range of neurological symptoms and behavior associated with autism-related disorders.
DAN! practitioners believe that by interrupting this storm and eliminating the substances that triggered it, individuals can regain their neurological health. The special diets, supplements and other remedies DAN! practitioners prescribe are designed to accomplish this.
Many parents who subscribe to the DAN! treatments also make use of other interventions, including Applied Behavioral Analysis and special education programs in their public schools.
Some parents say these approaches are of limited value and have become unnecessary after DAN! treatment is implemented; others say their children’s ability to benefit from such behavioral and educational strategies is enhanced.
It’s not uncommon for families to spend $10,000 to $12,000 or more for each of the two years it typically takes to treat a child with the DAN! interventions, including visits to a certified practitioner, purchasing special foods, nutritional supplements and other materials, and paying for laboratory testing. Most costs are not covered by insurance.
The DAN! approach has attracted hundreds of licensed practitioners – including osteopaths, chiropractors, naturopaths, nurse practitioners, and some medical doctors – who have been certified to use the DAN! protocols in their practices.
DAN! in Maine
Naturopath Fredric Shotz is one of a handful of certified DAN! practitioners in Maine. Shotz is a retired commercial pilot and a 2004 graduate of Bastyr University Naturopathic Medical School in Washington state.
His Portland practice, Maine Integrative Wellness, offers a range of health care services, including “holistic family medicine,” “advanced natural medicine,” “holistic mental health services” and a “detoxification center.”
In a recent interview, Shotz said he is currently treating about 37 Maine children for autism spectrum disorders.
“Without qualification, I can say that autism is due to the toxic loads kids get through various environmental sources,” Shotz asserted.
He pointed to the growing number of vaccinations recommended for babies and young children, many of which contain, or used to contain, mercury as a preservative.
But lead from old paint, mercury from silver dental fillings, radon gas from Maine’s granite underpinnings, excessive use of antibiotics at an early age, and prenatal exposure to such substances through the mother, can also set the stage for autism, he said.
Many children show marked improvement with temporary diet changes alone, Shotz said. Others require a process called chelation to help extract stored metals from their body tissues.
Some children profit from time spent in a special oxygen-rich environment, he noted. Every child is different, and every family has a different level of trust in the DAN! approach and the practitioners who employ it.
Does he tell parents he can cure their child’s autism?
“I tell them I have no idea what the results will be, but that these are the best interventions we have available and many children have lost their diagnosis,” Shotz said.
Success, he said, is largely dependent on the parents’ level of commitment to the hard day-to-day work of the DAN! protocols, including purchasing and preparing the ingredients of the specialized diet for a year or longer and administering the dozens of supplements – tablets, liquids, creams and suppositories – to their balky children.
“There are parents who just don’t have it in them to persist,” Shotz said. “But the ones who are really with the program virtually all make progress. For people to deny this works is absurdity.”
Among conventional medical practitioners and others in the field, the DAN! approach is at least controversial and often divisive.
“Anyone who’s talking ‘cure’ is talking fraud,” said Vincent Strully, founder and executive director of the New England Center for Children in Southborough, Mass.
In a recent telephone interview, Strully said parents who elect to follow the DAN! protocols are gambling with their children’s future by investing time, energy and money in an unproven treatment that builds false hope and is based on “voodoo science.”
Despite its endorsement by some well-intentioned medical professionals, Strully said, DAN! is just one of a number of short-lived pseudoscientific fads developed in recent years to capitalize on parents’ desperation.
Parents who wish to enroll their autistic children in his ABA-based education and research program must specifically agree not to dabble in such treatments.
Dr. Don Burgess, president of the Maine Chapter of the American Academy of Pediatrics, is more conciliatory. Burgess, who practices in Kennebunk, emphasized that a link between autism and vaccines has never been proven, and that even though most vaccines no longer contain mercury, rates of autism continue to climb.
The lack of well-designed research studies on the safety and effectiveness of DAN! and similar approaches is disturbing, Burgess said, but he understands parents’ need to explore alternatives for their autistic children.
Dietary changes overseen by a physician or nutritionist are unlikely to hurt children and may even prove helpful, Burgess allowed.
But chelation is potentially dangerous and should be avoided except in cases where a child’s blood level of mercury or lead is extremely high, he said.
From up in Aroostook County, Deb Lipsky says DAN! is “a bunch of bunk.” Diagnosed with high-functioning autism just 1Â½ years ago, Lipsky, 45, has emerged as a popular national speaker and first-hand expert on living with autism. She also facilitates a Bangor support group for parents and others affected by the disorder.
Lipsky, who lives in Linneus, said ABA and other behavioral models “work beautifully” for many children and adults with autism. The group she runs is accepting and supportive of whichever treatments parents explore, she said, but will not tolerate fanaticism.
Parents who embrace DAN! don’t see themselves as fanatics – just truth-tellers.
“We need to get the message out that autism is a treatable illness,” declared Belfast resident and DAN! mother Tina Frank.
Frank leads a local support group for mothers who, like her, follow the DAN! protocols. The group is called MIMRAC – Moms in Maine Recovering Autistic Children. Laura Plourde, who now works for Fredric Shotz in Portland, is a regular visitor to the Belfast meeting and also runs a similar group in Portland.
Frank’s 5-year-old son, Jeffrey, was diagnosed with autism when he was 3 but is now “nearly cured,” she said, thanks to the intensive interventions prescribed and monitored by Shotz.
She and the other mothers in the Belfast group are undaunted by the lack of double-blind studies or peer-reviewed articles about DAN! in mainstream medical journals.
Some parents may approach DAN! with skepticism, Frank acknowledged. But they become believers “when you start reading the literature and filling out the questionnaires, and you see every one of your child’s problems described accurately, and you start doing the treatments and they work.”
At a recent meeting, eight group members shared stories about their children – infants through school-age – and the progress they’ve made. Several said their children have stopped or measurably decreased their strange, self-stimulating behavior, such as head-banging, spinning around in circles and making finger puppets.
The children don’t experience intense emotional meltdowns when their routines are disrupted. They are regaining lost language skills. They’re more focused, functioning better in school and interacting more appropriately with friends and family. Their digestive systems have normalized. They sleep better at night.
Laura Plourde told the other mothers that Riley, after just about a year of treatment, is now “a typical child in many ways.” He pesters his brother to play games with him and initiates conversations with strangers.
“We – his doctor and his parents – expect full recovery within the next year, after the remaining lead is removed from his body,” she said.
Riley’s response to the DAN! protocols is typical, according to Frank.
“Mothers come to these meetings, and they go back to their doctors with the books and the literature and they say, ‘I just want to try this; please help me.’ And most doctors, who are supposed to help people, turn away from it. I have a real problem with that,” Frank said.
“Doctors need to be educated about these protocols,” she said firmly. “This is not witchcraft; these are time-tested medical interventions, and they work.”