Less than a year ago, Erica Daniels, a Horsham mother of two, did what once upon a time she would have considered unthinkable. She gave her autistic son, Leo, now 12, a dose of cannabis oil – marijuana.
Medical researchers generally argue that evidence for the drug's effectiveness in treating autism is lacking and its safety unproven.
But Daniels had heard promising stories told by other parents. Still, after 10 years of seeing her son grapple with severe anxiety, temper tantrums, and obsessive behavior that too often left him seeming like an unhappy boy, she was unprepared for what happened next.
“The change was dramatic,” Daniels recalled. “We sat down and watched Where the Wild Things Are. Before, he would be jumping up and down and stimming" — self-stimulating behavior common with autism — "and watching Elmo. Only Elmo.”
Since then, she, Leo, and his sister have been able to do things together that other families take for granted: going out to eat together, shopping, snuggling, even taking — and enjoying — a trip to Disney World. She recently published Cooking With Leo: An Allergen-Free Autism Family Cookbook.
Along the way, Daniels, 43, has become what she calls a “#Cannamom,” a medical marijuana activist who believes that cannabis may the answer for untold numbers of people with autism.
An estimated one in 68 children is on the autism disorder spectrum, which can range from individuals with high intellectual functioning to those who harm themselves and cannot communicate verbally. Typically, people with the disorder have difficulty with social interactions and communication, and tend to engage in repetitive behaviors.
Daniels, who shared her family's story in an episode of the Viceland cable channel's Weediquette series Wednesday night, considers herself fortunate to live in one of a handful of states that recognize autism as an automatic qualifying condition for medical marijuana. Delaware is another, although only for adults. New Jersey's Department of Health is considering adding the condition. Other states will make exceptions under certain circumstances.
Daniels is one of more than 200 caregivers to whom the Commonwealth of Pennsylvania has granted "Safe Harbor," allowing her to administer medical marijuana to her child. The special legal status is limited to children. Since there are no medical marijuana dispensaries yet in Pennsylvania, parents such as Daniels still risk arrest transporting cannabis products home from states where they are now sold.
While she and other parents say they are willing to take that risk for the benefits they believe cannabis brings to their children, many doctors and others in the medical community argue that the safety of marijuana's active components has not been established.
And the evidence so far is anecdotal — reports that would not persuade federal regulators to approve any other treatment.
“There is every reason to exercise extreme caution with this drug,” said Emanuel DiCicco-Bloom, a physician and a neuroscience professor at Robert Wood Johnson Medical School of Rutgers University, who studies autism and has followed what little research exists.
DiCicco-Bloom, like others in the field, said he was concerned about the potential for harm from long-term exposure to cannabis, especially for children whose brains are still developing. He said further study is needed.
So does Charles Pollack, director of the Lambert Center for the Study of Medicinal Cannabis and Hemp at Thomas Jefferson University.
“The thing that worries me is, we have no data,” Pollack said.
Pollack said he understands the desires of parents for hope and behavior-changing therapies. But he said too little is known about the toxicity of regular marijuana use.
Christian Bogner, a Michigan-based ob/gyn often cited by parents who believe in the benefits of medical cannabis to treat autism, is a distinct outlier. He noted that patients already are prescribed medications that can have significant side effects.
Additional research is “fine," Bogner said. "Just don’t take away this option from these parents.”
Leo's mother is well aware of the mainstream medical community's objections. She views cannabis as a “natural” substance. More important, she said, is the change she sees in her son:
“He’s just happy now.”