Much of this enthusiasm stemmed from the widespread media coverage in 2013 of Charlotte’s Web, a marijuana strain with high levels of CBD. The strain reportedly helped its namesake, Charlotte—a young girl with a form of epilepsy called Dravet syndrome—go from having hundreds of seizures a week to being practically seizure-free. Perhaps because epilepsy frequently accompanies autism, parents soon began giving marijuana to their children with autism, and reporting great successes. Medical societies warned that these claims were only anecdotal. But to some parents, marijuana was no worse than the conventional drugs that didn’t work and triggered terrible side effects.
Around that time, Karlee was at her wits’ end. A visit to doctors had yielded only a prescription for Risperdal (risperidone), which Spencer, then 11, had tried before. That and similar drugs had “put a wet blanket” over her son and had done little to help him. Spencer tried behavioral therapy, but driving to the closest clinic took Karlee more than three hours each way. So after reading the article about marijuana, she drove to Seattle, nearly 300 miles away, in search of a doctor willing to prescribe it for a child. Even though Washington’s approved indications for marijuana use don't include autism, it does allow use for severe gastrointestinal issues, which Spencer has in abundance.
Giving her son marijuana was not an easy decision for Karlee. “Growing up, it was: ‘Drugs are bad, drugs are bad, marijuana is terrible, it’s a gateway drug for heroin and meth and so on,’” she says. “I still have that wrestle in my head thinking, 'Oh my gosh, you’re doing it to get him high.’” Ultimately, she says, she realized that if she didn’t give him marijuana, she’d end up giving him something even more dangerous.
With her prescription in hand, Karlee was able to visit a for-profit medical dispensary that sells marijuana oils and tinctures—marijuana extracts steeped in alcohol. At these dispensaries, customers are greeted by a bewildering variety of choices. Marijuana includes a mix of hundreds of bioactive compounds, and plant breeders have created hundreds of strains, each of which harbors a different proportion of these chemicals.
Tetrahydrocannabinol (THC), the chemical that creates the high, is the best-known compound. It acts on the CB1 receptor in brain cells that regulate pain, mood and appetite. By contrast, CBD does not lead to a high and has been well studied in animal models for its anti-seizure properties. Unlike THC, it binds to multiple receptors, but it’s unclear which of these pathways mediates its effect on seizures.
Families must choose a strain based mainly on the dispensaries’ advice or on internet lore—a fact that makes some researchers extremely nervous. “I worry a lot about a physician sending a child, or a child’s parents, to a dispensary to have a conversation about what type and dose and route of administration of cannabis should be given to a kid,” says Ryan Vandrey, associate professor of behavioral sciences at Johns Hopkins University in Baltimore. “To me, that’s completely backwards,” he says. Vandrey studies the effects of marijuana exposure on adults.