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One November afternoon on an elevated ranch in Rhode Island, Kristal and Chris's 13-year-old son had just returned home from school.
"How is the school?" Chris says.
"Wrong!" Said Dylan. It's a skinny kid with glasses – still small enough that his mother wraps him in a bear hug when he becomes uncontrollable.
He had a lot of bad days. Dylan's parents examine the daily reports his school sends home.
"So, on this particular day, there were 27 cases of property destruction," said Kristal. "He has had 25 incidents of aggression, he has only one self-harm behavior, so it's pretty weak."
Their son, Dylan, has a spectrum disorder of autism. And his symptoms seem to defy treatment with traditional medicine. (To protect the privacy of their son, we do not use the family name.)
"One would think that many of the medications that he took could calm a horse," says Kristal, who listed a list of 16 drugs he's tried, including Ritalin, Klonopin, and Abilify.
They also tried special diets: gluten-free and dairy-free.
Last winter, Dylan's behavior became so uncontrollable that he was hospitalized for nearly five weeks.
So, a week before Thanksgiving – courtesy of Rhode Island health officials and support from Dylan's psychiatrist – Kristal and Chris started experimenting with giving Dylan marijuana for medical purposes.
Rhode Island is one of a small but growing number of states that allow marijuana for medical purposes for the treatment of severe forms of autism.
The decision raises hope for some parents of autistic children. But there is little scientific evidence on the benefits – and risks – of marijuana use among these children.
"The research base for many hopes of using marijuana for medical purposes for autism – it's really minimal," said David G. Amaral, psychologist and research director of the MIND Institute of the University of California, Davis. (M.I.N.D. is synonymous with medical investigation of neurodevelopmental disorders.) "I mean there is very little clinical evidence of its effectiveness."
Meager evidence because there have not been any major clinical trials to determine whether marijuana or its compounds are effective – or safe – in the treatment of autistic children.
"Unless a clinical trial is done correctly and shows the safety, # 1, of the drug," says Amaral, "and then the benefit of this product … it may be that families lose their time – and possibly exposing family members to a potentially dangerous situation. "
This is not to say that marijuana is not promising for the treatment of autism. In fact, the first large-scale clinical trial in the United States to test the idea is just beginning at Montefiore Medical Center in New York.
The trial, funded by a $ 1.3 million grant from the US Department of Defense, will examine the effectiveness of a cannabis-based compound called CBDV (cannabidivarin) on irritability and repetitive behaviors in children with autism spectrum disorders.
Dr. Eric Hollander, principal investigator of the study, is leading the Compulsive Spectrum Program for Autism and the Obsessive at the Montefiore Medical Center and the Albert Einstein College of Medicine. The trial should include about 100 patients and end in 2021.
But parents like Kristal and Chris do not wait.
They are looking at the online publications of other parents of autistic children about their experiences with marijuana for medical purposes. Kristal reads aloud the post of another mother:
"I had to share this behavioral chart … The good notes are from last summer – crazy and awful behaviors, it always regresses in summer.The encircled area highlights the important decrease in behavior. then and every past and now: medical marijuana. "
"In a way, I think of it as a cure for cancer," says Dr. Todd Levine, a psychiatrist who specializes in working with children with autism at the Women & Infants Hospital in Toronto. Rhode Island, Providence. "If your child has cancer and you fail chemotherapy and someone from the NIH says we have an experimental drug, you will leave."
Levine, who cares for Dylan, supports her parents' decision to see if marijuana for medical purposes can help their son.
In their kitchen, Kristal shakes a medicine bottle filled with homemade marijuana oil.
"Are your medications really fast?" she tells Dylan.
He shouts, "No!" and swear.
His parents have learned to ignore these explosions. Dylan paces and then settles down.
Kristal uses a plastic dosing syringe to extract 25 milligrams of homemade cannabis-infused olive oil and gushes it into Dylan's open mouth.
And already, Chris says, they feel like it works.
"I noticed that it was a little easier to get along with him in the morning," Chris says. "He's not so angry, he does not wake up angry, he wakes up and, and you know, he's getting ready and doing his thing, he's asking to get dressed and ask the little one -lunch."
These reports from parents – along with comments from local doctors and a medical literature review – helped persuade Rhode Island health officials to add Autism as a qualifying condition for marijuana to medical purposes.
"Serious autism, in particular, is not a curable condition and treatment options are very rare," says Dr. Nicole Alexander-Scott, director of the Rhode Island Health Department. "So, there is an element of compassion in that."
Under Rhode Island's new regulations, doctors must first try drugs approved by the Food and Drug Administration – and consult a child psychiatrist or pediatric neurologist – before allowing children to consume marijuana for medical purposes.
In addition to Rhode Island, at least six other states have added autism to the list of debilitating conditions that allow patients – including children – to qualify for marijuana for medical purposes.
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