9:31, 03.Aug 2018
Parents of children with severe autism spectrum disorder are looking more and more to medical marijuana as a potential treatment. But the issue raises tricky legal and ethical questions.
Even some experts remain conflicted.
Stories and anecdotal reports of medical marijuana’s ability to treat severe ASD frequently pop up in the media. You can read about the parents of Dylan, a child from Rhode Island (one of a handful of states that recognizes ASD as an indication for medical marijuana), who after trying every treatment for their son — from Ritalin to gluten and dairy free diets — arrived at cannabis.
According to an interview with NPR, Dylan’s behavior often causes problems both at school and at home. After beginning the regimen of cannabis oil, his behavior appears to improve. He’s easier to get along with and less angry.
Similar anecdotes to Dylan’s have appeared in the Chicago Tribune and other national news outlets. Grassroots organizations like Mothers Advocating Medical Marijuana for Autism have formed, and groups of parents have banded together across social media — all for the sake of doing what is best for their children.
Despite anecdotal reports of marijuana’s ability to treat the most severe of ASD symptoms, the scientific evidence hasn’t clearly reached the same conclusion. Nor has it been demonstrated that giving medical cannabis to kids is safe.
But many families raising children with severe autism are desperate to look at every possible option.
“Autism is a devastating diagnosis. Families that have a child especially with a severe type of ASD are severely impacted and these parents are desperate looking for solutions, and I think that we have to be very cautious in what we recommend to them,” Dr.John Rogers Knight, founder and director emeritus of the Center for Adolescent Substance Use and Addiction Research at Boston Children’s Hospital, told Healthline.
“When anything comes along and we start getting anecdotal reports of miraculous improvement, it’s going to be very appealing to people,” he said.
New studies and skeptical experts
While early research seems promising, experts remain concerned that it is too early to determine if treatments are safe. In a few small studies in recent years, cannabis oil has been found to help some children with autism.
A new small study from Israel, where medical cannabis is federally recognized and approved for a variety of conditions, found that cannabis oil was “safe and effective” for the treatment of symptoms of ASD. The observational study collected data on behavior via parental self-reporting before and after treatment to examine quality of life and mood changes in 188 teens diagnosed with ASD.
After 6 months of treatment, 30 percent of patients reported significant improvement in symptoms, and more than 50 percent reported moderate improvement.
Knight raises numerous concerns about the study, however. Most notably that the study is supported by, and several of the authors are employees of Tikun Olam, the largest national provider of medical cannabis in Israeli.
Additionally, he says that the study doesn’t do enough to answer questions about safety.
“My major reservation with this report is they are reporting outcomes for side effects up to six months and I’m not concerned about short-term side effects of THC… Over the long term, I have grave concerns about what the outcomes might be,” he said.
Despite criticism, the findings are similar and appear to support similar conclusions from other studies from Israel.
One such study of cannabis treatment in 60 children with ASD found that behavioral outbreaks were improved in more than 60 percent of the patients.
Nonetheless, rigorous, large-scale, placebo-controlled trials are lacking — though one is slated to begin later this year in the United States.
Is cannabis safe for ASD?
In a literature review from 2015 of medical marijuana for use in pediatric and behavioral problems such as ASD and ADHD, Knight concluded that “cannabis cannot be safely recommended.” He says that the most recent studies haven’t changed his mind either, although he understands the parents’ motivation.
“I have no criticism for any family that decides to try anything to help their child,” said Knight.
However, medical marijuana supporters say that grassroots support for cannabis treatment of ASD, is indicative of a historic trend in the United States.
Paul Armentano, deputy director of National Organization for the Reform of Marijuana Laws (NORML), said that, in part because ASD parents had anecdotal evidence about the benefits of medical marijuana, the scientific community has taken an interest in exploring these drugs.
“It is because of their advocacy that the scientific community is just now beginning to substantiate the patient community’s claims,” Armentano told Healthline. “As is often the case with issues surrounding cannabis, both science and the law are playing ‘catch up.'”
The dilemma for parents
But the lack of high-quality evidence and the legal status of marijuana in the United States, which varies from state to state, puts parents of children with severe ASD in a difficult position, and one that is potentially outside the law.
It remains illegal on a federal level.
Currently, the American Academy of Pediatricians opposes the legalization of marijuana for recreational or medical use, although they do support further research. However, the organization has updated their policy to include a “compassionate use” clause, which specifies that some children with life-limiting or debilitating diseases may benefit from cannabinoids and cannot wait through a “meticulous and lengthy research process.”
Susanne Duvall, PhD, a neuropsychologist and assistant professor of pediatrics at Oregon Health and Science University, has studied some of the ethical problems surrounding medical marijuana treatment for children with ASD.
She says that parents and primary doctors or pediatricians need to be able to have open conversations about medical marijuana, even if it means informing parents that it could be illegal.
“I would argue that I’d rather have a patient comfortable enough that they are able to ask me these questions or ask their prescribing provider those questions so you can have an honest conversation about what’s known in the research, possible risks and benefits, what’s not known, in the case of this question, so that the information is on the table as opposed to it being a taboo subject,” she told Healthline.
And treating children with ASD also raises other important issues related to care.
“Something that’s important to consider is that a lot of these children with more severe presentations are nonverbal, so there are additional challenges any time you are making medical decisions for somebody who might struggle to communicate side effects or reactions that are happening,” said Duvall.
Roughly 1 in 59 children have ASD, according to the Centers for Disease Control and Prevention, and that number has been increasing. In severe cases symptoms can include rage or aggression, and self-injurious behavior. It is in these most extreme cases, where medical marijuana is often sought out.
The general consensus is that there simply needs to be more research on whether medical marijuana is a safe and effective treatment for ASD.
“It’s really hard to inform and advise parents in the absence of any hard evidence to go on. That’s a main structural barrier that potentially could help provide some more empirical evidence either way,” said Duvall.