Marie Myung-Ok Lee, a New Yorker whose son was diagnosed with a painful gastrointestinal disease and severe autism when he was three years old, spoke to ATTN: about integrating cannabis into her son’s treatment regimen.
“The cannabis has been one of the biggest changes in his life and has kept him out of an institution,” Lee said.
Autism is a complex developmental disorder that affects social and cognitive functions to varying degrees. In the case of Lee’s son, symptoms include violent rages characterized by punching, scratching, food-throwing, and self-harm, episodes that happen up to 300 times a day at its worst. Traditional medications did little to mitigate these symptoms, forcing Lee to pursue alternative treatment options.
Lee found cannabis, her son becoming, at the age of nine, the youngest medical marijuana patient in Rhode Island.
Though there is limited scientific information about the effects of cannabis on autistic patients, anecdotal evidence proved compelling. In a recent editorial for The Washington Post, Lee described the barriers parents of autistic children face: “This subterfuge, the stigma, the fear and the work required to find a steady supply of the right plant prevent more families with kids in crisis from trying medical marijuana. Even parents sent along by our son’s neurologist, who has been amazed by his transformation, have concluded that it’s all too much for them.”
Lee was also assured by Dr. Lester Grinspoon, a professor emeritus at Harvard Medical School’s psychiatry department, that “the worst we could do was make our son fall asleep.”
“I knew that the drug could help curb wild behavior, impulsive behavior, so I suggested that they try this,” Grinspoon told ATTN:. “I would never have done this with any other drug. I knew they were not get into trouble.”
After some trial and error, and using oil tinctures to measure the doses, Lee found the right stain of cannabis for her son’s condition. Medical marijuana appeared to work; it “left him clear-eyed and alert, without the constant pain-furrow in his brow or the off-the-wall rages,” she wrote.
Access to cannabis for autism is seriously lacking in the U.S. There are only two states, Delaware and Pennsylvania, where autism explicitly qualifies patients for a medical marijuana recommendation, and four additional states that will grant them for “debilitating medical conditions” generally, leaving it up to the doctor’s discretion, according to the group Mothers Advocating Medical Marijuana for Autism. That could change pending further research into the effects of cannabis on autism, but as it stands, only one study is currently underway in Israel to investigate how CBD, a non-psychoactive ingredient in cannabis, treats the disorder.
Regardless of the emerging science and trend away from the total prohibition of marijuana, a major stigma is still attached to parents who use the substance to treat their kids. One Post reader claimed that Lee’s son would have to be “doped up for the rest of his life” as a result of his treatment, for example. Parents in Colorado who used cannabis to treat their kids with epilepsy told ATTN: they heard similar complaints. But, as these parents note, there are non-psychoactive forms of cannabis — and the legal drugs pharmacists give to treat severe autism or epilepsy in children can leave them zombie-like, with a reduced quality of life.
STOCKSY/MIHAEL BLIKSHTEYN – STOCKSY.COM
But one of the greatest barriers to treatment and research is the fact marijuana remains federally prohibited — a Schedule 1 drug, the most restrictive category, under the Controlled Substances Act. Lee said that since sharing her story, readers have advised her to pack up and move her family to Colorado, where marijuana is legal for medical and recreational use.
“I think they’re missing the point,” Lee said. “As long as it’s on Schedule 1, you are always in danger of being prosecuted federally.”