Thalia Michelle cried after taking her kids to see The Lego Batman Movie last year. It was the first time her 13-year-old son Lance had been able to sit through an entire feature film in public without tantrums, without screaming, without hitting.
Lance has autism. When he was diagnosed just shy of his third birthday in 2008, he was nonverbal. He didn't potty train until he was six and he often smeared food on the wall. He was also extremely aggressive, often hitting, pulling hair, or hurting himself.
“My life was hell. I didn’t sleep…In 2012, I was pretty suicidal even,” Michelle tells me. “I did everything [for him] short of any hardcore pharmaceuticals—[Lance did not get] psychotropics or benzos or anything. I stayed away from SSRIs. I used to say, if we could just get rid of the aggression, if he would just stop hitting people…”
Then in 2014, the self-described conservative Christian mother from Dripping Springs, Texas, discovered cannabidiol, or CBD, a compound extracted from cannabis plants. It cannot get you high, unlike THC, the more famous cousin of CBD.
The difference CBD oil made for Lance was almost immediate, Michelle says. “I'd say that first year of using CBD, his aggression went down probably 60 to 70 percent. In the subsequent years, we've been able to get it down even further.”
Encouraged by these results, that same year, Michelle helped co-found MAMMA, or Mothers Advocating Medical Marijuana for Autism. The non-profit group’s goal is for parents across the country to be legally able to procure cannabis extracts for their kids, and to achieve this, they’re helping rewrite state legislation across the country. MAMMA is part of a growing wave of support for giving cannabis oil (typically high-CBD, low-THC formulations) to kids with autism. Parents say it helps their children regulate their emotions, sleep better, and manage other co-occurring conditions including epilepsy.
But giving CBD oil to kids has sometimes led to Child Protective Services stepping in and threatening parents, even in states like California where CBD is legal. These stories have further motivated groups to lobby for protective legislation.
Watch: Undercover Cop Tricks Autistic Student into Selling Him Weed
In 2018 alone, at least eight states have enacted legislation either promoting or banning the use of marijuana for autism specifically. Arizona and Colorado have passed laws against its use, while Delaware, Louisiana, Michigan, Minnesota, Rhode Island and, most recently, Utah, have enacted measures permitting it.
Other states, such as Texas and Colorado again, are setting their sights on similar legislation. Iowa's Board of Medicine is currently considering whether to add severe pediatric autism to its list of qualifying conditions for medical marijuana. MAMMA chapters have been involved in many of these campaigns or shared resources with groups that have lobbied for the passage of these laws, Michelle says.
“We're just autism moms sitting at a table. We don't go out seeking which states are next,” Michelle explains. “As states roll in and as other moms want to sit at their kitchen table and do what we're doing, we say yes. And we give them [access to] our Dropbox and we tell them what we’ve done and we hold their hand and [we’re] just all trying to do it together.”
States that have previously enacted pro-cannabis laws for people with autism include Georgia, Oregon, and Pennsylvania, plus Puerto Rico. Other places like Massachusetts, California, and Washington, DC, don’t explicitly allow it, but they have lax enough medical marijuana laws that doctors can still prescribe marijuana for the condition.
The Food and Drug Administration (FDA) doesn’t endorse CBD or any form of cannabis for the treatment of autism. At the time of publication, Autism Speaks and Autism Society of America hadn't responded to multiple emailed requests for comment about using CBD for autism. A recent commentary in the journal Global Pediatric Health provided guidelines for doctors whose patients may be using CBD for autism, noting “CBD and similar products remain a promising yet unproven intervention in the treatment of children with ASD.”
And while a small but growing body of research has examined the evidence behind the anecdotes, there still haven’t been any clinical trials of cannabis extracts for autism tested against placebos.
A 2017 study from Chile gave 21 patients with autism oral cannabis extracts that included CBD and THC, and found they were “dramatically more effective than conventional medicines,” with approximately 67 percent of patients showing improvements in their symptoms. A 2018 study from Shaare Zedek Medical Center in Jerusalem gave 60 kids a 20:1 mixture of CBD and THC, and 61 percent of them saw improvements in behavioral disturbances. It’s worth noting, however, that neither study had control groups of people who received no treatment as a comparison, though the authors of the 2018 study have launched a placebo-controlled clinical trial based on their results. Researchers from UC San Diego are also seeking approval for a trial comparing CBD to placebos.
Still, a recent review, published by a team from Tel Aviv University, found “no convincing pre-clinical or clinical data” for the efficacy or safety of medical cannabis, including CBD, for autism. So what’s going on—can cannabis help or not?
First, let’s define autism. It’s a broad spectrum of developmental disorders characterized by deficits in communication and social interaction. Autistic people sometimes struggle with speech and nonverbal communication, may perform repetitive behaviors, and many are sensitive to certain sounds or visuals. Aggressive behavior, including self-harm, is also common.
The cause isn’t fully understood, but autism is more frequently identified today due to more thorough diagnostic criteria. As many as 1 in 59 children fall on the autism spectrum, according to the most recent data from the Centers for Disease Control and Prevention. However, a recently released study in the journal Pediatrics put the rate even higher—1 in 40 or 2.5 percent of the population.
Yet only two FDA-approved medications for managing autism symptoms exist on the market, and they leave much to be desired, Michelle says. Both drugs are only prescribed for irritability in autism, don’t address many of the other symptoms, and they have FDA black box warnings indicating death as a possible side effect. (However, another drug, balovaptan, was given “breakthrough” status by the FDA this year and may become available soon.)
The first, risperidone (Risperdal), is an antipsychotic with a long list of side effects including sudden death in patients with dementia and causing young boys to grow breasts due to hormone imbalances. The other drug, aripiprazole (Abilify), can cause sedation, uncontrolled movements and spasms, incontinence and poor impulse control, and, more rarely, seizures, and death in the elderly. The FDA warning for aripiprazole also cites an increased risk of suicidal thoughts and behaviors in children, adolescents, and young adults taking antidepressants.
Yet, when Colorado governor John Hickenlooper justified rejecting a cannabis autism bill last summer, he cited the drug’s potential side effects, such as young people developing schizophrenia from cannabis use. “I vetoed it just because [the bill] went to all levels of the autism spectrum and my medical advisors said that they were concerned with people at the far end,” Hickenlooper said in an interview with Salon. He did, however, order the state to invest $1.35 million USD into randomized, controlled trials using CBD to treat irritability from autism.
But Michelle says the parents she knows are far more worried about aggressive autistic kids hurting someone, being institutionalized, ending up in jail, or worse. “Some of these kids die, okay?” she says. “We know a child that died from self-injurious behaviors. Other kids wander and end up in ponds, dead. These are the kinds of things our parents are worried about.”
Michelle adds, “When I sit down with a legislator and they want to start talking to me about how long-term effects on the brain are dangerous for pediatric [cannabis] use, you know, it’s almost laughable when you put it up against what the FDA has said is okay [referring to aripiprazole and risperidone]. On top of that we have Adderall, which is amphetamine, and that’s okay to give the kid.”
This year, the FDA approved the first plant-based cannabis drug for two rare, difficult-to-treat forms of epilepsy. Called Epidiolex, the drug is 98 percent CBD, but the remaining 2 percent is a company secret. There are some major differences between the pharmaceutical version of a drug that many people buy online or from smoke shops: Epidiolex has more stringent quality controls than some over-the-counter cannabis oil products, however, many patients swear by certain brand-specific formulations. (It’s worth noting that GW Pharmaceuticals, the maker of Epidiolex, is investigating the use of cannabinoids to treat autism spectrum disorders.)
Some parents insist that their kids need THC, not just CBD, in order to function, but a number of state laws, such as in Texas where Michelle lives, forbid THC concentrations above 0.3 percent. Furthermore, Epidiolex’s recent move into the CBD market has sparked fears that access to cannabis oil may soon become limited to one formulation that costs about $32,500 a year, although insurance may cover most of it.
“I don't trust the pharmaceutical industry because they have pushed so many drugs through so quickly that have caused harm. They’ve also done a lot of good, though,” Michelle says. “It’s hard not to be wary and wonder what is the end game here. I am worried Epidiolex could create problems [with availability of other oils].”
Because Epidiolex is now Schedule V under the Controlled Substances Act, that means doctors can technically prescribe the drug for off-label use, including for autism spectrum disorder. But just because they can, does it mean they should?
The Israeli researchers from Tel Aviv University conclude probably not, citing a lack of rigorous trials, but note that cannabinoids like CBD are “relatively safe.” One of the greatest remaining risks is product contamination, which can be avoided with strong regulation. One study author, Abraham Weizman, declined an interview.
Used alone or with other drugs, CBD may help with concurrent symptoms of autism spectrum disorder, including sleep disorders, ADHD, anxiety, and seizures, the researchers note. But for other conditions, such as psychosis, addictive behavior, mood or cognitive disorders and aggressiveness, the level of evidence is low.
But another team of Israeli researchers have found promising results. Israel is the medical marijuana research capitol of the world and a decent amount of research on cannabis and autism specifically is coming from the small Middle Eastern nation.
Israel’s first and largest medical marijuana supplier, Tikun Olam (Hebrew for “repair the world"), has helped more than 700 autistic children reduce anxiety and aggression, according to Ma'ayan Weisberg, the company’s head of international relations. Results from a prospective cohort study (meaning it was not randomized or controlled) involving 93 autism patients is expected to be published in the coming weeks and soon the company also plans to begin a double-blind controlled trial on the effects of high CBD oil.
But Weisberg cautions that cannabis is not effective for all children, and the oil does have some side effects, such as fatigue or diarrhea, so it’s not accurate to tout CBD as a “miracle” drug. “To say that something that you put into your body doesn't have side effects is not speaking the truth,” Weisberg says. “Going around saying, ‘Oh, this is like the perfect thing and it helps everything,’ can have a bad effect of the future of this industry.”
It’s not yet clear what metabolic pathway cannabis oil might be acting on to get these benefits or how it may interact with other drugs, so more research is needed. There is some evidence in rodents that increasing the amount of anandamide, a cannabinoid that occurs naturally in humans, can improve autism symptoms. However, this hasn’t been demonstrated in people and if and how cannabis oil may help people with autism is still open to debate.
Medical marijuana may be more popular these days—polling pegs its support among American adults at around 85 percent—yet when it comes to kids with autism, it’s still quite controversial. But desperate families like Michelle’s may see few options for their children, and as popularity for CBD rises, the issue is likely to spark more debate.
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This article originally appeared on VICE US.