A 2013 study published in the journal Research in Autism Spectrum Disorders reported that 53 percent of autistic children suffer from violent behaviors. Although antipsychotics like Risperdal are commonly prescribed to aggressive and self-injurious autistic children, many kids fail to improve, which is why parents have followed so closely the accounts of Marie Myung-OK Lee and Mieko Hester Perez, who have both spoken very publicly about how well medical marijuana controls the dangerous behaviors of their autistic sons. Other success stories are shared quietly, in private Facebook groups, by moms who aren’t interested in the media spotlight but who want to help other families struggling to manage these behaviors in their own children. One mother reported that marijuana given for medicinal uses helped immensely.
But anecdotal reports are easily dismissed. Where are the double-blind, placebo-controlled studies? Don’t expect them any time soon warns Rick Doblin, PhD, executive director of the Multidisciplinary Association for Psychedelic Studies (MAPS), who has been fighting with the National Institute on Drug Abuse (NIDA) and the Drug Enforcement Agency (DEA) for years to pursue privately funded studies that were already approved by the Food and Drug Administration (FDA). “There’s been enormous government obstruction,” said Doblin. “We had two medical marijuana studies approved by the FDA, one looking at AIDS wasting and the other on migraines, that were killed because NIDA refused to sell us the marijuana. Now we have another study on PTSD in vets that was approved by the FDA about four years ago and NIDA still can’t say when they’ll be able to get us the strains we need or how much they will cost. We could get them right now in Colorado or California and other states but the DEA refuses to authorize any other growers. State-legal marijuana is still illegal federally.” Few researchers, Doblin points out, can afford to spend five years trying to get a study off the ground.
Which is too bad because, although Grinspoon believes that cannabis “will be the medicine used for these kids in the future,” even those parents who have access to legal medical marijuana have many questions about how to maximize the therapeutic benefits. Karen Echols, whose autistic son Alex became the face of the debate after the family reported dramatic improvements to his severe self-injury with cannabis, told me they were unable to get consistent, stable results from marijuana and ultimately had to send Alex across the country for a six month hospitalization. Echols attributes the variable response to a lack of information. “The problem in Oregon at the time was that there were no dispensaries. You were given your card and left to your own devices. We had just the raw plant, and then we had to figure out how to make it into an actual medicine. In some other states, you can go into a dispensary and get advice about strains and preparations and dosing. But it was complete guesswork on our part.” Echols hopes to try cannabis again with Alex in the future, calling it “the best success we ever had.”
So medical marijuana remains trapped in a vicious cycle. Federal restrictions will never be lifted without randomized, placebo-controlled trials supporting its efficacy but those studies can’t be done until the federal restrictions are lifted. The need for these studies remains the least controversial element of the entire issue. Even doctors cautious about administering marijuana to children acknowledge that more information is needed. John Williams, MD, a child psychiatrist and President-elect of the Academy of Cognitive Therapy, has treated enough adolescents whose recreational marijuana use triggered psychotic episodes to wonder if THC may, in certain subpopulations, be “neurotoxic,” a theory that has been espoused by segments of the medical community for the past decade. Nevertheless, he says, “What I’d like to see are peer reviewed, randomized-controlled trials that examine whether marijuana has clinical benefit for certain conditions. Let’s get the data published in reputable journals, not on the internet. I wouldn’t be opposed to doing these investigations as long as they were done in a scientifically appropriate way.”
But the Obama administration remains opposed, refusing to lift federal obstructions despite appeals from parents, doctors, and 30 members of the U.S. House of Representatives, who wrote letters to Health and Human Services Secretary Sylvia Burwell asking her to do so. Meanwhile, thousands of families hopeful that marijuana might help their autistic children the way it helps those of Lee, Perez and others wait for answers.