When Sarah’s child was diagnosed with autism, Sarah snapped into action. “We spent hours and thousands of dollars on different therapies,” she says. “Occupational therapy, speech therapy, play therapy, ABA [applied behavioral analysis] therapy. We did 26 months of elimination diets for a number of reasons, to identify triggers, allergies, sensitivities.” Nothing worked, so she looked for new options.
“Right off the bat, I asked what was at the forefront of autism treatment? What was at the cutting edge — that is not bleach, shots of gold, or hyperbaric treatments that we couldn’t afford?”
She kept finding the same answer: medical marijuana. She was curious, but not ready, even as her child became more and more difficult to handle. She remembers him flinging himself off the second floor of the house, eating things that weren’t food, and smashing lightbulbs. A child that had been easy and mellow as a baby and toddler, who had been able to say “uh-oh” after falling off a tricycle and to exclaim “it’s good!” while eating a popsicle, could no longer communicate.
“He lost all that language,” she says. “All of it.”
By the time her child was in elementary school, Sarah no longer felt comfortable taking a shower without another adult in the house. Her child would climb cabinets in the family’s home, sailing off the kitchen counter in search of the sensory reward of flying. His diagnosis includes obsessive-compulsive disorder and pica, an eating disorder that involves craving and ingesting inedible things like hair or dirt. Sarah had to have eyes on him at all times.
“Or else,” she says, “I’ll walk into a room and catch a flying child.”
Finally, she tried “the green bottle”: a small vial of THC oil, a distilled version of the psychoactive compound found in the cannabis plant. When combined with CBD oil, which differs from THC because it has no psychoactive effects, it helped her child calm down and even use a few words. She noticed no negative side effects, but because she lived in a state where autism was not yet a qualifying condition for medical cannabis, the treatment that helped her child was illegal. Forced to choose between breaking the law and buying the green bottle — the only thing that helped her child and, in turn, her family — Sarah went underground, and she never looked back.
In the last decade, parents like Sarah — who, like all of the parents quoted here, was granted anonymity so that she could tell her story without fear of prosecution — began to connect and mobilize. Medical cannabis was typically the last resort, following an array of other interventions that simply did not work. These parents are willing to risk everything for a treatment they believe can help their children. They do not view medical marijuana as a cure for autism, but rather as a safe way to reduce challenging or even dangerous behaviors. In disability language, it is more of an accommodation than a treatment — a tool to enable their kids to live fuller lives.
These children are not the quirky, clever savants often depicted in pop culture portrayals of autism. Their behaviors are complex, varying greatly from child to child. Some are physically aggressive toward others or themselves. Others are nonverbal, having few or no words with which to communicate hard-to-handle emotions. For some of these children, medical cannabis has been the only approach that seems to provide relief.
What can parents do when the only thing they believe helps their child is legally out of reach? Many of these so-called “marijuana mamas” turn to underground channels, wagering that if they are careful they won’t get caught. In most states, their activities are illicit, if not outright illegal, and their tendency toward public activism puts them at an increased risk of being caught and prosecuted. These women are rich and poor, conservative and liberal, united by their fearlessness in the face of the law — and their willingness to do anything to help their children.
At first, CBD oil — taken from the hemp plant, which was recently removed from the federal government’s list of controlled substances — by itself was enough to soothe Sarah’s child. But those positive effects soon diminished. Her child began waking up in the middle of the night and resuming the same behavioral problems that had previously turned her family’s life upside down. She needed something more powerful.
“My child was in distress,” she says.
While at a disability event, a stranger overheard her talking about her child and suggested that they might have something that could help. The next day, they came to her house with the green bottle of THC, which had been bought legally in another state but was firmly outlawed where Sarah lived. Sarah saw no other option. Her child had already been prescribed a buffet of pharmaceuticals, including anticonvulsants and amphetamines, and she refused to return to them.
“Harm is coming your way if you give your children those drugs,” she says. “It’s not an ‘if’ — it’s a question of at what point.” So she tried the THC.
It worked, calming her child like never before and making life livable again. The green bottle quickly became an essential part of their routine.
Parents who are not lucky enough to stumble across this kind of THC connection sometimes take a more aggressive approach.
“You find a drug dealer and you ask him,” explains Maria, a suburban mom from another state. “And he’ll ask somebody who knows somebody, and then you can get oils and extracts.”
She makes it sound easy, but she had not been around marijuana for two decades when she began seeking it for her child. Marijuana extract helped her child maintain eye contact and communicate with her, and it also caused a decrease in violent behavior and aggression.
“We saw gains within three or four days,” she says. But they also saw side effects, including hyperactivity. She began experimenting with different formulations and incorporated THC extract into the mix. It was easy to find, since people knew her from her activism and would approach her — whether at events or online — to offer help procuring different products. And, as she says, “THC is easy to get on the black market.” After months of trying different mixtures and formulations, she found a CBD oil that worked best for her child. She received it through the mail from a contact in a state with legal access to marijuana.
Medical marijuana changed her family’s daily life in ways large and small. It wasn’t just the increased eye contact and language. Her child danced better, more fluidly. He stopped touching people inappropriately. He was more engaged in his social world, and the family felt it.
“We’re just seeing expansion. It’s so subtle and I don’t know how to put it,” she says. “But I’m relaxed.”
She quickly became fluent in the language of underground medical marijuana. Less than a year after starting her child on it, she can rattle off the varying strengths and formulations she has tried, discuss the state of medical marijuana in localities around the country, and deftly navigate the world of drug dealers and smugglers. And yet, she remains a respectable, conservative, suburban mom.
“I’m a card-carrying Republican,” she mentions casually. “A hard-core Republican.” She paused. “I know, that blows everyone’s mind.”
Although they may seem to be at odds, her personal politics weave seamlessly into her life as a marijuana mom. The criminalization of marijuana is at odds with her libertarian philosophy, and she has found conservative meetings to be excellent places to make a connection.
“I’d go to meetings for Republicans opposed to marijuana prohibition,” she says, “and afterward they’d be like, ‘Hey, if you need something … ’”
Organized parent advocacy for medical cannabis and autism dates back to 2014, when two moms from Austin, Texas, got together and launched a Facebook page. They called themselves MAMMA, or Mothers Advocating Medical Marijuana for Autism. Co-founders AmyLou Fawell and Thalia Michelle both have children with autism and connected through a church group for parents of children with disabilities. The group’s mission was simple: they advocated for the safe, legal use of medical cannabis to help people with autism. It was an optimistic endeavor focused on possible futures and potential interventions, and it was completely separate — intentionally so — from the underground scene. MAMMA offered a haven for parents who wanted legal access in the future, but were not willing to go rogue in the present. It caught on quickly. Once launched, MAMMA began expanding immediately at the local, state and ultimately national level.
“It grew much faster than we were ready to handle,” says Fawell.
The Facebook page for MAMMA USA, or “Big MAMMA,” as Fawell calls it, now has more than 18,000 followers. Their Facebook page features an American flag with blue text proclaiming “… Because Medical Cannabis Helps Autism.” A second photograph shows a young child in a field, along with these words: “God gave us cannabis for autism.” The group’s mission is highly specific: advocating for the legal use of medical cannabis for autism. They do not drift outside of autism, simply because it is not their focus. And, more important, they do not provide any information on how to procure or use medical marijuana.
The MAMMA co-founders are self-described conservative Christian moms. Religion and politics are central to the group’s history, but in ways that might surprise.
“I think what happened and why MAMMA is making a difference in Texas,” says Fawell, “is that we knew intuitively that the people we needed to win over were our people.”
The MAMMAs sensed from the beginning — perhaps correctly — that Democrats would likely support their efforts, but that bipartisan support would be crucial to forging real success. They have focused their advocacy efforts on converting Republicans, and they have found supporters on both sides of the aisle, including Democratic Representative Beto O’Rourke. And, in a move that gained national attention, delegates at the Republican Party of Texas Convention in 2018 overwhelmingly endorsed pro-marijuana measures, including decriminalization, industrial hemp and medical marijuana use.
When they started the organization, no state included autism as a qualifying condition for medical marijuana. That changed in 2015, when Delaware added autism to its medical marijuana programs. Seven other states now list autism as a qualifying condition and an additional five are considered autism-friendly. MAMMA has been involved in some capacity in almost all of the states that allow these treatments for individuals with autism. They show no sign of stopping.
MAMMA continues to support similar efforts across the country by providing ideas, research and a model for advocacy. Fawell likens the group to a think tank with a laser focus. Eventually, she hopes they will no longer be needed.
“We’re trying to get the job done and become obsolete. We just want to go away and take care of our kids.”
When her green bottle ran out, Sarah turned to a trusted friend in a state where THC was legal and asked her to start mailing her the product.
“As long as you’re not mailing ‘flower,’ as they like to call it — if you’re mailing oil or edibles — it’s really so simple,” she says. “You just send it in the mail.”
She keeps most of each shipment of oils for herself, but she gives some to friends in similar circumstances — becoming what the law would call a drug dealer.
She does not share the product with strangers. If a parent reaches out to her, she will give advice about how to purchase medical cannabis in another state but will offer no help beyond that. These tightly guarded networks have formed across the country, and despite their secrecy, it has never been easier for people to obtain medical marijuana for their own family’s use.
Marijuana mamas walk a strange line. They are a vocal activist movement centered on activities that are underground and somewhat accepted, yet still illegal. Sarah spoke of doctors making children provide urine samples or calling child protective services after learning that a young patient was receiving medical cannabis. When asked if she worried about the potential risks, she replied, “Every day. I’d be a fool to just tra-la-la on that one.” She has the names of several attorneys who could help in a crisis. Even Fawell, MAMMA co-founder and president, spoke matter-of-factly about the potential risks for parents.
“The climate is favorable, but it’s still something that is highly illegal,” she says.
“The level of risk associated with medicating a child will keep you up at night,” Sarah told me. Yet she and a growing number of others are willing to take that risk. For now, they see no alternative, so they tell their stories. Despite the risks, these parents maintain storytelling as a central aspect of their activism. They tell their stories to help their children. To show others they are not alone. And the stories keep coming.
“I know a lot of parents who are super, super fearful right now,” said another mother. “This interview would trip some of my friends out. They’d be like, ‘What are you doing? Shut up and quit talking to people!’”
“How far am I willing to take this?” she mused aloud. “We’ll see.”
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