(Some) Maine Parents of Children with Autism Embrace DAN Treatment Protocol

The Bangor Daily News is reporting on Maine parents of autistic children who have embraced the DAN protocol for treating their autistic children. The article provides testimonials from parents who endorse the DAN treatment protocol and quotes and references from authorities which describe the DAN protocol as “voo doo” science. The article is a balanced presentation of a controversial autism subject and is accompanied by a companion article reporting on the 1 in 150 prevalence figure and the mainstream recommendations for ABA treatment with judicious use of pharmaceutical applications.

http://bangornews.com/news/t/news.aspx?articleid=147858&zoneid=500

http://bangordailynews.com/news/t/news.aspx?articleid=147862&zoneid=500

Maine parents embrace controversial treatment model for autistic children

By Meg Haskell

Saturday, March 24, 2007 – Bangor Daily News

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.

…

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 1½ 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.

True believers

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.