The Readers' Forum contribution concerning autism and detoxification of mercury (September 2006) helped me realize how much both my personal views and treatment of this neurodevelopmental disorder have changed during the last 10 years. In 1996, my 14-month-old son displayed all the features of severe regressive autism: loss of all language skills, gaze avoidance, and a maddening insistence on routine.
That year we had little evidence-based research pertaining to autism, and conventional medicine offered little to parents. There was, however, a growing cohort of children, who, like our son, had parents seeking help for this peculiar developmental malady-the prevalence of which had been described to me during my residency as "one or two cases a career." As a parent, I wanted help; yet, if I was ill-prepared to treat autism, how could I expect help from my colleagues? I became a primary care physician and part-time autism researcher.
During the past 10 years, the accepted term pervasive developmental disorder morphed into autistic spectrum disorder, classic or high functioning autism with apraxia, and now, semantic-pragmatic and nonverbal learning disorders. The recognition of a spectrum of neurodevelopmental and comorbid problems, a regressive subtype of autism, prenatal and postnatal environmental variables that may influence manifestations of the disorder, have, along with genetic syndromes associated with autism, helped create the myriad theories that confuse both parents and researchers.
Physicians associated with Defeat Autism Now (DAN) are popular, and provide many nonreimbursable services such as chelation therapy for mercury poisoning, prescribe antibiotics and supplements to help cleanse the gut, and offer weekly vitamin B13 injections to improve a child's ability to detoxify. Conventional medicine offers no similarly intriguing magic bullets, and so helping parents decide on a course of treatment-evidence-based or alternative-is a delicate balance.
So many questions, and possibilities, tempt parents to try complementary and alternative therapies. A mother recently told me that her autistic 8-year-old son had been cured through nonconventional therapies. And yet, during my examination, her son continued to exhibit extreme deficits in social interaction and significant language delay. This mother's meticulous records revealed that her son's treatments have cost the family $1.35 million. Autism has created this vulnerable population.
My advice to parents is grounded in the fact that, since the age of 2 years, my son has followed the bland, evidence-based diet of applied behavioral analysis that is constantly modified based on conversation with his teachers and therapists. We challenge him when we think we can, and provide support systems as necessary. He has grown into a loving, awkward boy who fights with his two sisters and, for the most part, acts like a neurotypical 11-year-old. My wife and I remain focused on supplying a variety of educational, social, and behavioral opportunities through our family and friends, creating our own "medical home" for our son.
At present, I provide pediatric care to more than 85 children and families with autistic spectrum disorders in my private practice. Many parents seek my advice concerning medical care, or to validate their next step. Often I just review their story, usually with many parallels to my own, and then provide feedback to help improve behaviors or advance developmental milestones. When counseling parents, I express greater concern about the well-being of the family unit than about the intervention they are currently trying. I focus on family dynamics, making sure that the marriage, siblings, and family are on solid footing. I provide the type of insight that was not available to my family 10 years ago.
Your sensitivity to the stressful environment of a family dealing with autism will help you preserve your needed place, and presence, in their child's supportive and nurturing medical home. I believe our role is to guide families in creating and following educational and treatment plans, facilitating communication among providers, and teaching behavioral therapy as a mix of unconditional, stubborn love. These tools will ultimately provide lasting gains in the management of autism-more so than an overnight miracle discovery touted on television, or through a Web site.
John W. Harrington, MDValhalla, N.Y.