He has autism and terrible pain. Marijuana is taming his demons.
Last spring, I wrote about applying for a medical marijuana license for my autistic, allergic 9-year-old son, J., in hopes of soothing his gut pain and anxiety, the roots of the behavioral demons that caused him to lash out at others and himself. After reading studies of how cannabis can ease pain and worry, and in consultation with his doctor, we decided to give it a try. A month into daily cannabis tea and mj-oil cookies (my husband discovered his inner baker), I reported, we both felt that J. seemed happier. But it was hard to tell. He’d have a good morning, then at dinner he’d throw his food. Still, we did notice that when he came home from school with stomach pain (he wasn’t getting any supplemental cannabis there), he’d run to the kitchen and demand his tea and cookie. As if he knew this was the stuff that dulled the hellish gut pangs.
How is J. doing now, four months into our cannabis experiment? Well, one day recently, he came home from school, and I noticed something really different: He had a whole shirt on.
Pre-pot, J. ate things that weren’t food. There’s a name for this: pica. (Pregnant women are known to pica on chalk and laundry starch.) J. chewed the collar of his T-shirts while stealthily deconstructing them from the bottom up, teasing apart and then swallowing the threads. By the time I picked him up from the bus stop after school, the front half of his shirt was gone. His pica become so uncontrollable we couldn’t let him sleep with a pajama top (it would be gone by morning) or a pillow (ditto the case and the stuffing). An antique family quilt was reduced to fabric strips, and he even managed to eat holes in a fleece blanket—so much for his organic diet. I started dressing him only in organic cotton shirts, but we couldn’t support the cost of a new one every day. The worst part was watching him scream in pain on the toilet, when what went in had to come out. I had nightmares about long threads knotting in digestive organs. (TMI? Welcome to our life!)
Almost immediately after we started the cannabis, the pica stopped. Just stopped. J. now sleeps with his organic wool-and-cotton, hypoallergenic, temptingly chewable comforter. He pulls it up to his chin at night and declares, “I’m cozy!”
Next, we started seeing changes in J.’s school reports. His curriculum is based on a therapy called Applied Behavioral Analysis, which involves, as the name implies, meticulous analysis of data. At one parent meeting in August (J. is on an extended school year), his teacher excitedly presented his June-July “aggression” chart. An aggression is defined as any attempt or instance of hitting, kicking, biting, or pinching another person. For the past year, he’d consistently had 30 to 50 aggressions in a school day, with a one-time high of 300. The charts for June through July, by contrast, showed he was actually having days—sometimes one after another—with zero aggressions.
More evidence: the bus. For the last few years, the arrival of J.’s school bus had been the most traumatic and unpredictable moment of our day. J. has run onto the bus and hit the driver in the face. He has scuffled with the aides and tried to bite them. His behavior brought out the worst in people: One bus monitor (we joked that her personality better suited her for a job at the local prison) seemed to dislike all the kids but treated him with particular contempt, even calling him names, once in front of us.
But the summer brought a new set of aides and driver. It hit me that these folks knew only “Cannabis J.”—a sparkly-eyed boy who says hi to them each morning, goes quietly to his seat, even tries to help put his snap-on harness on.
One day, J.’s regular aide was sick, and a lady with a wacky smile lovingly escorted J. off the bus. There was something familiar about her; once I superimposed a hateful frown on her face, I burst out to my husband, as the bus snorted away, “It was her, wasn’t it?” We laughed as J. looked on. “Funny!” he said.
There’s a twist to the happy marijuana story, though. While the cannabis has eased J.’s most overwhelming problem, his autism has become more distinct. As the school data show, his aggressive behavior is far less frequent, but his outbursts—vocalizations that include screams, barking, yips of happiness—remain. When J. was in his dark phase, we spent our time out of sight, out of mind, inside our house with a screeching, violent, food-and-dish-flinging J. The sounds were contained by double-paned windows (when they weren’t broken). Now, within our family, we’ve reached a lovely homeostasis: household goods unbroken, our arms and J.’s face unscratched. But as we venture outside to play in the yard, take after-dinner walks, or ride with J. on our tandem bike, we can see that the people in the neighborhood know our family is different, and that this is not always to their liking.
Our closest neighbors (on one side, we could probably pass them a pie from our kitchen) have always been understanding. But on the next street, a man stops playing ball with his son when he sees us, and pushes his boy into the house as we approach, turning his back on J.’s cheery “hel-llooo!” He is the man we suspect yells at us—from behind other houses, so we can’t see him—when J. sometimes vocalizes a bit loudly outside. Then there’s the mom with the son about J.’s age (who, incidentally, sounds exactly like J. when he screams). She won’t make eye contact when we pass, and pointedly ignored a party invitation from us. I’ve also heard, from behind a fence of a family who stares at us but never says hi, “Oh, that’s J.”
And so sometimes we feel a bit the victims of a 21st-century shunning. In the larger context, however, these are small annoyances from small people. The chair of my department invites J. to her yard so he can play in her outdoor pool and lets him vocalize to her neighbors, who do not complain. A mini-gang of too-cool teen boys walks by our short fence after school and always greets J. sincerely, as he calls out adoringly, “Hi, hi, HIIIIIIIIII!” I am grateful that the cannabis has given J. the chance to get out and experience life. If it sometimes punches him back, it also offers him flowers.
I don’t consider marijuana a miracle cure for autism. But as an amateur herbalist, I do consider it a wonderful, safe botanical that allows J. to participate more fully in life without the dangers and sometimes permanent side effects of pharmaceutical drugs; now that we have a good dose and a good strain. (“White Russian”—a favorite of cancer patients, who also need relief from extreme pain). Free from pain, J. can go to school and learn. And his violent behavior won’t put him in the local children’s psychiatric hospital—a scenario all too common among his peers.
A friend whose child was once diagnosed with autism, but no longer (he attends school at his grade level and had three developmental assessments showing he no longer merits the diagnosis), wanted to embark on a kind of karmic mission to help other children. After extensive research, she landed on cannabis the way I had. “It has dramatic implications for the autism community,” she says, and it’s true. We have pictures of J. from a year ago when he would actually claw at his own face. None of the experts had a clue what to do. That little child with the horrifically bleeding and scabbed face looks to us now like a visitor from another world. The J. we know now doesn’t look stoned. He just looks like a happy little boy.
And cannabis still can surprise us. We worried that “the munchies” would severely aggravate J.’s problems with overeating in response to his stomach pangs. Instead, the marijuana seems to have modulated these symptoms. Perhaps the pain signals from his stomach were coming through as hunger. J. still can get overexcited if he likes a food too much, so sometimes when he’s eating my husband and I leave the room to minimize distractions. The other day, we dared to experiment with doenjang, a fermented tofu soup that he used to love as a baby. The last time we tried it, a year ago, he’d frisbeed the bowl against a tile wall. (Oh, smelly doenjang soup and the million ways it can make a mess.)
We left J. in the kitchen with his steamy bowl and went to the adjoining room. We waited. We heard the spoon ding against the bowl. Satisfied slurpy noises. Then a strange noise that we couldn’t identify. A chkka chkka chkkka bsssshhht doinnng! We returned to the kitchen, half expecting to see the walls painted with doenjang. Everything was clean. The bowl and spoon, however, were gone.
J. had taken his dishes to the sink, rinsed them, and put them in the dishwasher—something we’d never shown him how to do, though he must have watched us do it a million times. In four months, he’d gone from a boy we couldn’t feed to a boy who could feed himself and clean up after. The sight of the bowl, not quite rinsed, but almost, was one of the sweetest sights of my parental life. I expect more to come.
By Marie Myung-Ok Lee
October 5, 2009