For two years now, my husband and I have been using medical cannabis—legally—to help soothe our autistic son’s gastrointestinal pain and decrease his concomitant violent behaviors. As I’ve been chronicling in a series of columns for DoubleX, pot has allowed us to bypass the powerful psychotropic drugs that are often used to dull such aggressive outbursts but have a host of serious potential side effects—including permanent tics, diabetes, and death—and did nothing to address J’s pain.
Some of the responses to these columns suggest that I will not be up for Mother of the Year any time soon. “No poor child deserves to be attacked by marijuana when it is SUPPOSED to be protected!” read one such response on the parenting site Babble.com. But I’ve received vociferous support from parents who say that, were they in my situation, they would do the same thing in a heartbeat. I’ve also heard from parents who’ve started using cannabis for their own autistic children, with mostly good results and no serious side effects.
In our case, I would call our experiment a qualified success. Not because cannabis has cured J, who’s now 11, or anything near it. But it’s alleviated some of his severest symptoms so that he, my husband, and I can actually enjoy each other, rather than being held hostage by his autism in a house full of screams, destruction, and three very unhappy people.
Over the years, we’ve experimented with dozens of marijuana strains to find the ones that work best for J, and we continue to fine-tune the formula. Our grower has figured out how to extract the plants’ active properties into an olive oil tincture, which we can administer in precise amounts from a dropper. With more experience, we’ve learned to finesse the dose: more when J appears to be in a lot of pain, less when he’s okay. When the dosing is perfect, J spends three or four hours much more relaxed and engaged than he was before; at night, he sleeps peacefully.
What is most exhilarating—and frightening—about this venture is the feeling that I have to reinvent the wheel for my son, and often have to re-reinvent it every day. Certainly no one is saying, “Pot for your kid, what a great idea!” There is no cannabis-autism doctor-expert, no book, no protocol for me to follow. The best I can do is get tips from J’s grower, who has helped other patients, and puzzle out the biochemical aspects with help from J’s neurologist.
Early on, we found a doctor who suggested that many of J’s destructive behaviors could be due to the pain from an autoimmune gut condition. There is still much disagreement in the autism community over whether autism is purely psychiatric or involves other bodily systems, as well—but as a parent with a child in such obvious distress, it’s tough to wait for a consensus that might never come. We are seeing hints of a paradigm shift, in which people may be willing to rethink some longstanding assumptions about autism and its connection to other bodily ailments: Last month, for example, Robert MacNeil did a story for PBS’ NewsHourabout his autistic grandson, who has “serious physical illness” in his digestive system. MacNeil’s daughter ended up working with Timothy Buie of Massachusetts General Hospital, the gastroenterologist we worked with as well. In the segment, Buie notes that it’s hard to assess pain in children with autism, since impaired communication is one of the hallmarks of the disease—but that “part of the problem with that is that we’ve accepted that [increased agitation and hyperstimulation] are behaviors that we often see in children with autism, and we’ve written it off to their autism.”
J used to bang his head really hard, every day; on the wall, on the floor, on the edge of our cast-iron bathtub. When we started him on a Buie-prescribed course of pharmaceutical anti-inflammatories—which have no known psychotropic side effects—J stopped the head banging, leading us to believe that he was, in fact, acting out of pain. Unfortunately, the therapy did not work long-term, as J developed both tolerances and side effects. The cannabis, though, has quelled those aggressive behaviors for two years now.
Because my husband and I still battle with the day-to-day challenges of autism (like a recent regression to diapers), it’s sometimes hard to remember how far J has come. The pica that had him literally eating clothing, and which plagued and worried us for so long, stopped completely after his first dose of cannabis, though no one seems to understand why.
J recently had his first “well-child” checkup in two years. (He’s closely monitored by his neurologist, so we often go long stretches of time between routine doctor visits, so as not to subject the practice—and ourselves—to the trauma of dragging him in, kicking and screaming, just to have him weighed.) During the pre-exam discussion, J’s pediatrician was both taken aback and a bit skeptical to hear about his new cannabis “therapy.” But when I brought J into the examination room, she saw that he didn’t look the least bit stoned, which had been her big fear. Instead, he said “Hi” to her and patiently (for him) allowed her do the exam, which was a first—usually he can’t bear be to be touched, especially around his head. But this time, J even let her stick the tickly otoscope in his ears and shine a light in his eyes. He said “Ah” on command. Last time, she couldn’t listen to his heart because he kept grabbing the stethoscope off her head. This time—after he had a listen first—he handed the stethoscope back to her and let her finish the exam. He stepped compliantly on the scale to be weighed and measured. She had to admit that he was much more relaxed, especially compared to a visit four years ago, when we were treating his gut pain only with Pentasa, an ulcerative colitis drug Buie had prescribed. Then, he was lethargic, irritable, and sickly from irregular eating, and when the drug wore off during our appointment, our doctor was treated to the kind of violent tantrum my husband and I were seeing daily at home. Still, she stopped short of endorsing our course of action, though she was relieved to hear that J’s neurologist, well respected in his field, had been convinced enough to write the necessary prescription for J to become a licensed user of medical marijuana.
At the end of our visit, J started to cry and melt down a bit—clearly, he’d had enough. I was upset because he was upset, but then the doctor commented, despite herself, that she couldn’t believe how much better he was doing—and I was reminded, again, how far he’s come.
Two years ago, I wanted so badly for J to learn how to ride a bike. After my husband and I bought him a bike with training wheels, he would sometimes sit on it for a minute or two, try to pedal, and then have a tantrum, hurling the bike in frustration. His classroom bike-riding lessons weren’t going any better. At a school meeting, the consensus among his teachers and other professionals was that independent bike riding was something he’d probably never learn.
But cannabis not only mitigates J’s pain, it also seems to help him to focus. In the modern world, we are constantly bombarded by sensory stimuli, but marijuana’s effect on short-term memory allows a user to focus intently on a single sensation (that “Whooooaaaa, man … look at that flower” feeling). One feature of autism is a heightened, disordered, nondiscriminating sensitivity, so that autistics seem to see and feel and hear and smell everything at the same time. They’re overloaded with information, both relevant and irrelevant. How scary that must be—and then, in J’s case, to possibly have unremitting pain on top of that. No wonder he uses aggression as an escape, while other autistics may do things to withdraw, like rocking in a corner. But with cannabis (which also regulates anxiety and stress), I noticed that J had a much higher tolerance for activities that involve multiple steps, like unloading the dishwasher.
Bicycling, when you think about it, involves myriad functions: coordination of gross motor movement with the vestibular, visual, and proprioceptive systems that regulate balance. On a nice weekend I brought J, his bike, his helmet, and a wrench to a nearby private school that has a bunch of wide, paved paths. I removed the training wheels from his bike, put him on it, and gave him a push, figuring that once he realized how good it felt to bike—to move along on his own power—he was going to love it. He pedaled and immediately tipped over, laughing, as he was expecting the training wheels to be there holding him up. But after a few tries, he started to get it. And before the afternoon was over, he was biking independently.
A few weeks later, the clinician in charge of J’s afterschool therapy came for his monthly visit. I told him that I wanted to show him something. We walked over to the private school, which was abuzz with afterschool activity. J, unfazed, mounted his bike and started pedaling. The clinician was agog as he watched J, incredibly graceful as he maneuvered the bike around a long, paved oval.
“He looks—wow. I mean, most autistic kids just ride the bike straight into a wall, but he’s looking and steering and saying hi to us. I mean, you can hardly tell—”
“Run with me!” J called, and the clinician broke into a lumbering jog alongside him. J playfully skidded out by riding on his brakes—exactly the thing this man’s neurotypical sons do.
“How’d you get the idea to do this?” he asked, panting. I tried not to audibly sigh.
I know many people in J’s life mean well and work hard for him, but expectations tend to be low. And while this may merely be an attempt to be realistic, to avert disappointment, it also pains me. I am aware that no one thought he would ever have the concentration to manage the complex physical coordination necessary to ride a bike. But it’s true: If you want something done right, sometimes you have to do it yourself. No one cares about or knows our son as well as my husband and I do, and if I have to risk being thought of as the pot-pushing mom with a nontraditional bicycle-learning protocol who often won’t listen to expert advice, then so be it. The experts don’t live in my house, nor do they get to reap the rewards, like this morning, when J woke up, smiled, and wanted a hug—the boy who formerly woke us with a scream of pain. The boy who, since he was 3 years old, never gave us hugs or let himself be hugged, because he couldn’t bear to be touched. (Fittingly, the next person he bestowed a hug to was Organic Guy, his grower.) Now, when he’s proud of something, like his awesome bike riding skills, he glances to find my face, to make sure I’m looking.
We are still incredibly limited in the things we can do as a family. For now we can forget about getting on a plane to see Grandma in Minneapolis. But we’ve made successful trips to the beach, the farmers’ market, the zoo, and we’ve even gone on family bike rides. A friend, who happened to see us while we were out riding one day, commented that she’d never seen J (or us) looking so happy. I’m grateful medical cannabis is legal in our state and that I didn’t have to become an outlaw just to procure medicine for my son. I may never get that Mother of the Year award, but that’s okay, because J knows that I’ll do whatever it takes to get him what he needs. When he gets on the school bus in the morning, he wants reassurance, and before he boards these days, he often looks at me and asks, “Everything will be all right? Promise?” And I promise.