One November afternoon inside a raised ranch in Rhode Island, Kristal and Chris’ 13-year-old son had just arrived home from school.
“How’s School?” his father, Chris said.
“Bad,’’ Dylan said.
He’s a skinny kid with glasses, still small enough for his mom to wrap him in a bear hug if he gets out of control. He’s had a lot of bad days. His parents review the daily reports his school sends home.
“So on this particularly day he had 27 instances of property destruction. He had 25 incidences of aggression,’’ his mother said. “He had only one self-injurious behavior so that’s pretty low. They just recently started tracking swearing, because that’s an issue.”
Their son, Dylan, has an autism spectrum disorder. And his symptoms seem to defy treatment with traditional medicines. (To protect their son's privacy, we’re not using the family’s last name.)
He’s tried 16 different drugs including Ritalin, Klonopin and Abilify.
“You would think a lot of the medications he’s been on would tranquilize a horse,’’ his mother said.
They’ve also tried special diets: gluten-free and dairy-free. “We gave him hundreds of dollars of berries and oils…’’
Last winter, Dylan’s behavior became so out-of-control he was hospitalized for nearly five weeks. But Kristal and her husband are finding reasons to be hopeful in on-line posts from other parents of autistic children.
“Had to share this behavior chart,’’ Kristal said, reading from another mother’s Facebook post about her autistic child’s experience with medical marijuana. “The high marks are from last summer – crazy, awful behaviors. He always regresses in the summer. The circled area highlights the major drop in behaviors. The difference between then and every single summer in the past and now: medical marijuana.”
The members-only Facebook group, Whole Plant Access for Autism Support, boasts more than 10,700 members.
On a recent morning, inside Dr. Todd Levine’s office in Providence, Kristal discussed with him what she’d learned from the website.
Dylan started to get agitated, so she tried to sooth him with a hug.
Levine, a psychiatrist at Women & Infants Hospital, specializes in working with autistic children. And said he’s open to seeing if medical marijuana can help Dylan.
“In some ways I think about it like cancer care,’’ Levine said. “If your kid has cancer and you’re failing chemotherapy and someone at NIH says we have an experimental drug, you’ll go. “
But that’s what worries David G. Amaral, a psychologist and research director of the M.I.N.D. Institute at UC Davis in California. (M.I.N.D stands for Medical Investigation of Neurodevelopmental Disorders.)
“The research basis for a lot of the hopes for using medical marijuana for autism - it’s really minimal,’’ he said. “I mean there’s very meager clinical evidence for effectiveness.”
Meager evidence because there have been no large clinical trials to determine whether marijuana or its compounds are effective -- or safe -- in treating children with autism. Some research has linked a chemical in marijuana that gets you high -- known as THC -- to an increased risk of developing psychotic disorders like schizophrenia. That’s one reason why New York doesn’t allow medical marijuana to treat psychiatric disorders.
“Unless there’s a clinical trial done in the right way and showing the safety, No. 1, of the drug and then the benefit of it,’’ Amaral said, “it may be that families are wasting their time -- and maybe exposing their family members to a potentially dangerous situation.”
That’s not to say that marijuana doesn’t hold promise for autism treatment. In fact, the first large-scale clinical trial in the U.S. is underway at The Albert Einstein College of Medicine in New York. Dr. Eric Hollander, a psychiatrist and director of Autism and Obsessive Compulsive Spectrum Program at Montefiore Medical Center and the Albert Einstein College of Medicine, is examining whether a specific compound in marijuana could be effective in treating symptoms of autism in children.
The trial, funded with a $1.3 million grant from the U.S. Department of Defense, will examine the effects of a non-psychoactive compound in marijuana known as CBDV (which stands for Cannabidivarin) on 100 participants, ages 5 to 18, with autism spectrum disorders. Patients in the study will be randomly selected to receive either the CBDV or a placebo. Randomized controlled trials are considered the gold standard of scientific testing the efficacy and safety of experimental drugs. Participants’ moods and behaviors will be measured before and after treatments. The trial will take about 12 weeks; the study is expected to be completed in 2021.
But parents like Kristal and Chris aren’t waiting. In their kitchen, Kristal shakes a medicine bottle filled with homemade marijuana oil.
“Do your medicine real quick?” Kristal said.
“No!” Dylan screamed and swore.
His parents ignored his outburst, which quickly passed. Kristal plunged a plastic dosing syringe into a small bottle, drew out 25 milligrams of homemade cannabis-infused olive oil, and squirted it into Dylan’s open mouth.
And already, after barely a week of using the oil, his dad, Chris, said, they feel like it’s working.
“I notice in the morning he’s been a little easier to get along with,’’ Chris said. “He’s not as angry. He’s not waking up angry, he’s waking up and, and you know just getting ready and doing his thing. And asking to get dressed and asking for breakfast. Whereas it was a lot of yelling and swearing and I hate you and this and that.”
These reports from parents – along with input from local doctors and a review of the medical literature -- helped persuade Rhode Island health officials to add autism as a qualifying condition for medical marijuana.
Dr. Nicole Alexander-Scott is director of the health department.
“Severe autism, in particular, is not a curable disease and there are very few treatment options,’’ said Rhode Island’s health director, Dr. Nicole Alexander-Scott. “So there’s a compassionate care element to this.”
Rhode Island’s new regulations require doctors to first try the FDA-approved medications -- and consult with a child psychiatrist or pediatric neurologist -- before approving children for medical marijuana.
Besides Rhode Island, at least six other states have added autism to the list debilitating conditions that can qualify patients – including children – for medical marijuana. They include Delaware, Georgia, Louisiana, Michigan, Minnesota and Pennsylvania.