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.