Imagine finding out that your 3-yearold child has a chronic disease that may affect her speech and social skills for the rest of her life. Next, imagine realizing that there is no known cure. For children who have disorders on the autism spectrum, there is no magic bullet. In the past decade, however, medical researchers have discovered treatments that go beyond the traditional behavioral and educational therapies to help treat some of the symptoms of autism.
"Methyl B12 therapy is one of the best treatment options for kids in the spectrum," Dr. Sidney Baker, who has a private practice in Sag Harbor, said. "By best, I mean quick, cheap and safe."
Baker received his undergraduate and medical degrees from Yale, where he was also a faculty member for 20 years. In collaboration with Dr. James Neubrander and several other colleagues, he discovered Methyl B12 therapy as a treatment for autism in 2003. The treatment involves giving your child a small, "painless" shot. Hearing this might scare off some parents, but it actually isn’t as bad as it sounds.
"Learning to give a shot is not rocket science," said Baker. The shot itself is very small— about a 10th of a milliliter, or two drops in a syringe. "It’s really tiny. So, with a small, sharp needle you can even give it to your kid while they’re asleep. But it’s an easy thing for creating a bad impression because people don’t understand it."
Like the act of giving a child a regular shot, many facets of autism are misunderstood. For decades, people believed that autism was a psychological disease caused by bad parenting. Now, some people mistakenly believe that the cause of autism can be linked to the MMR vaccine. The medical community has soundly rejected both of these theories.
Considering the very low risks of B12 therapy, Baker said its potential benefits outweigh the possible side effects. In his experience, one in 10 kids experiences an "OMG effect," which is extreme success—a child starts talking for the very first time, is able to make eye contact or there’s a massive change in communication. It only takes a few doses to figure out whether a child is responsive to the treatment. "If we had to wait a year, it might be another question, but in three or four shots, you can tell if it’s working," he said.
Baker claims only about one in 10 patients don’t find the treatment beneficial. But some parents decide that the side effects are not tolerable—these include hyperactivity, inability to sleep and, in rare cases, tingling in the mouth and tongue. "We don’t have a good understanding of why some kids are harder to recover than others," he said.
Hyperbaric oxygen therapy is a second, newer treatment. It involves placing a child in a high-pressure, oxygen-filled chamber, to reduce inflammation in the brain. But HBOT is not as established as B12 therapy. "It’s still controversial, and it’s not reimbursed [by health insurance providers], which is a big issue," said Baker. "There are a lot of economics and politics that affect which options people have."
Daniel Szulkin, principal of Birch Family Services Mill Basin Early Childhood Center, said that none of his students have tried the B12 or oxygen therapies. "We have had children try the gluten-free diets, to mixed results," he said.
According to Szulkin and Mill Basin teacher Debra Robinson, while some alternative therapies may have some positive effects, a combination of behavioral and social-emotional approaches is often what is most helpful.
Fly Away, Janet Grillo’s feature film directorial debut, is a personal film derived from her own experience
"As the mother of a child with disabilities, I was immediately thrust into the challenge every parent must face at some point: meeting the needs of your child when it is at great cost to yourself," Janet Grillo explained about Fly Away. "Perhaps the very measure of love is what and how much we are willing to sacrifice. Although parenting someone with autism is particular, the primal drive to do the best for one’s child is universal. Fly Away tells this story."
Fly Away premiered as an official selection at the 2011 SXSW Film Festival, followed by official entries in the 2011 Palm Beach International Film Festival and Arizona International Film Festival. The film—which tells the story of a single mother of a teenage daughter severely impacted by autism—opens in New York April 15 at Village East Cinema. The film will be available April 26 on VOD and DVD, through which 10 percent of proceeds from DVD sales and 15 percent of proceeds from VOD rentals will be donated to Autism Speaks.
"As I have journeyed with other parents of children with special needs, I’ve witnessed great pain and extraordinary passion," Grillo went on to explain. "I’ve also watched parents unable to place their children in fulltime therapeutic residences, when it was clearly needed. While such placement is not best for all or even most children on the spectrum, it’s tragic when parents are too plagued with fear and guilt to make the choice when it is. If Fly Away eases the pain of even one parent’s torturous decision, or if it expands the heart of even one person untouched by autism to accept our children and appreciate our struggles, it will have been well worth making. The authenticity of our story will provide insight and hope. Truth often does."
Autism Speaks is North America’s largest autism science and advocacy organization.
Since its inception only five short years ago, Autism Speaks has made enormous strides, committing over $142.5 million to research and developing innovative new resources for families through 2014. The organization is dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. To learn more about Autism Speaks, please visit autismspeaks.org.