Why I Give My
He has autism and a medical marijuana license.
Marie Myung-Ok Lee teaches at Brown University and is the author of the novel Somebody’s Daughter, and is a winner of the Richard Margolis award for social justice reporting.
Question: why are we giving our nine-year-old a marijuana cookie?
Answer: because he can’t figure out how to use a bong.
My son J has autism. He’s also had two serious surgeries for a spinal cord tumor and has an inflammatory bowel condition, all of which may be causing him pain, if he could tell us. He can say words, but many of them—”duck in the water, duck in the water”—don’t convey what he means. For a time, anti-inflammatory medication seemed to control his pain. But in the last year, it stopped working. He began to bite and to smack the glasses off my face. If you were in that much pain, you’d probably want to hit someone, too.
J’s school called my husband and me in for a meeting about J’s tantrums, which were affecting his ability to learn. The teachers were wearing tae kwon do arm pads to protect themselves against his biting. Their solution was to hand us a list of child psychiatrists. Since autistic children like J can’t exactly do talk therapy, this meant sedating, antipsychotic drugs like Risperdal—Thorazine for kids.
Last year, Risperdal was prescribed for more than 389,000 children—240,000 of them under the age of 12—for bipolar disorder, ADHD, autism, and other disorders. Yet the drug has never been tested for long-term safety in children and carries a severe warning of side effects. From 2000 to 2004, 45 pediatric deaths were attributed to Risperdal and five other popular drugs also classified as “atypical antipsychotics,” according to a review of FDA data by USA Today. When I canvassed parents of autistic children who take Risperdal, I didn’t hear a single story of an improvement that seemed worth the risks. A 2002 study specifically looking at the use of Risperdal for autism, in the New England Journal of Medicine, showed moderate improvements in “autistic irritation”—but if you read more closely, the study followed only 49 children over eight weeks, which, researchers admitted, “limits inferences about adverse effects.”
We met with J’s doctor, who’d read the studies and agreed: No Risperdal or its kin.
The school called us in again. What were we going to do, they asked. As a sometimes health writer and blogger, I was intrigued when a homeopath suggested medical marijuana. Cannabis has long-documented effects as an analgesic and an anxiety modulator. Best of all, it is safe. The homeopath referred me to a publication by the Autism Research Institute describing cases of reduced aggression, with no permanent side effects. Rats given 40 times the psychoactive level merely fall sleep. Dr. Lester Grinspoon, an emeritus professor of psychiatry at Harvard Medical School who has been researching cannabis for 40 years, says he has yet to encounter a case of marijuana causing a death, even from lung cancer.
A prescription drug called Marinol, which contains a synthetic cannabinoid, seemed mainstream enough to bring up with J’s doctor. I cannot say that with a few little pills, everything turned around. But after about a week of playing around with the dosage, J began garnering a few glowing school reports: “J was a pleasure have in speech class,” instead of “J had 300 aggressions today.”
But J tends to build tolerance to synthetics, and in a few months, we could see the aggressive behavior coming back. One night, I went to the meeting of a medical marijuana patient advocacy group on the campus of the college where I teach. The patients told me that Marinol couldn’t compare to marijuana, the plant, which has at least 60 cannabinoids to Marinol’s one.
Rhode Island, where we live, is one of 13 states where the use of medical marijuana is legal. But I was resistant. My late father was an anesthesiologist, and compared with the precise drugs he worked with, I know he would think marijuana to be ridiculously imprecise and unscientific. I looked at my son’s tie-dye socks (his avowed favorite). At his school, I was already the weirdo mom who packed lunches with organic kale and kimchi and wouldn’t let him eat any “fun” foods with artificial dyes. Now, I’d be the mom who shunned the standard operating procedure and gave her kid pot instead.
But then I thought back to when J was 18 months old. We were vacationing on the Cape, and, while he just had the slightest hitch in his gait, I was sure there was something wrong. His pediatrician laughed. I called back repeatedly until a different doctor agreed to see us. J was taken into emergency surgery, to remove a tumor that was on the verge of inflicting irreparable damage. Sometimes, you just have to go with your gut.
And yet, I still hesitated. The Marinol had been disorienting enough—no protocol to follow, just trying varying numbers of pills and hoping for the best. Now we were dealing with an illegal drug, one for which few evidence-based scientific studies existed precisely because it is an illegal drug. But when I sent J’s doctor the physician’s form that is mandatory for medical marijuana licensing, it came back signed. We underwent a background check with the Rhode Island Bureau of Criminal Identification, and J became the state’s youngest licensee.
Having a license, however, is different from having access to marijuana. While California has a network of “compassion centers,” basically pharmacy-like storefronts that provide quality product from registered growers, Rhode Island’s Republican governor has consistently vetoed that idea, in spite of the local stories of frail patients being mugged in downtown Providence as they go in search of pot. We weren’t about to purchase street marijuana, which could be contaminated with other drugs, so we looked into growing the pot ourselves. But by law, medical marijuana must be grown indoors, and it requires a separate room with a complex system of hydroponics, fans, and precise lighting schedules. (This made me wonder how much THC was actually in the spindly plants the high school goofballs I knew grew in their closets).
The coordinator of our patient group introduced us to a licensed grower. A recent horticulture school graduate, he’d figured out how to cultivate marijuana using a custom organic soil mix. His e-mail signature even quoted Rudolph Steiner. The grower arrived at our house with a knapsack containing jars of herbs. We opened the jars to sniff the different strains of “bud”—Blueberry, which did smell fleetingly of wild blueberries, and Sour Diesel, which had a rich, winey scent. The grower also had cured some leaves for tea, and he brought a glycerine tincture, a marijuana distillate in olive oil (yes, organic), cookies (ditto), and a strange machine that looked, fittingly, like a lava lamp. Basically an almost-bong, this vaporizer heated the cannabis without producing carcinogenic smoke.
For most adults, the vaporizer is the delivery method of choice, as it allows the patient to feel the effects immediately and adjust the dose precisely. J gamely put his mouth on the valve and let us squeeze a little smoke into him. It shot right back out his nose. He looked like Puff the Magic Dragon.
The grower left us with a month’s worth of marijuana tea, glycerine, and olive oil—and a cookie recipe. No buds. We paid $80. (Granted, we haven’t checked up on how much a nickel bag costs these days.)
We made the cookies with the marijuana olive oil, starting J off with half a small cookie, eaten after dinner. J normally goes to bed around 7:30 p.m.; by 6:30 he declared he was tired and conked out. We checked on him hourly. As we anxiously peeked in, half-expecting some red-eyed ogre from Reefer Madness to come leaping out at us, we saw instead that he was sleeping peacefully. Usually, his sleep is shallow and restless. J also woke up happy.
But in a few days, J decided he didn’t like the cookie anymore and smashed it with his fist. We brewed him the tea, which smelled funky and grassy. He slurped it down, but without much effect. Many of the psychoactive compounds in marijuana are fat soluble, so I added a dropperful of the oil that we used in the cookies. That made him sleepy-looking but still aggressive. It became clear that when J ingested pot orally, it took two hours to see the results, and by then there wasn’t much we could do to dial the dose up or down. The grower visited us again to give J another try at the bong, with little success.
But it was also possible that J needed a little time to get off the Marinol. After two weeks, we noticed a slight but consistent lessening of aggression. And he wasn’t nervously chewing holes in his shirts.
We are now a month or so into this, and it’s still too early to know if we can find a dose and mode of delivery that gives us consistent results. Even if J could learn to use the vaporizer, it costs $600, and would leave the house reeking of pot. And we don’t want to get too dependent, because of the inherent limitations. Though we’d love to calm J with pot so that he can visit his grandmother in Minnesota, bringing a controlled substance on the plane isn’t the best idea.
But since we started him on his “special tea,” J’s little face, which is sometimes a mask of pain, has softened. He smiles more. For the last year, his individual education plan at his special-needs school was full of blanks, recording “no progress” because he spent his whole day an irritated, frustrated mess. Now, April’s report shows real progress, including “two community outings with the absence of aggressions.”
The big test, so far, has been a visit from Grandma. The last time she came, over Christmas, J hit her during a tantrum. This time, we gave him his tea, mixing it with goji berries to mask any odor, although it occurs to me that my mother, a Korean immigrant, probably doesn’t even know what pot smells like (and it actually smells a lot like ssuk, a Korean medicinal herb). She remarked that J seems calmer. As we were preparing for a trip to the park, J disappeared, and we wondered if he was going to throw one of his tantrums. Instead, he returned with Grandma’s shoes, laying them in front of her, even carefully adjusting them so that they were parallel and easy to step into. He looked into her face, and smiled.
When I think of the embarrassment I may feel if my colleagues see this article, or teachers or parents at J’s school, or his less open-minded doctors, I pause. Although I occasionally smoked pot as a teenager (believe me, in northern Minnesota, there was not much else to do), now that I’m a law-abiding adult, all the scary anti-drug messages are flashing in my brain. But when I researched cannabis the way I did conventional drugs, it seemed clear to me that marijuana at the very least wouldn’t harm J, and might help. It’s strange, I’ve come to think, that the virtues of such a useful and harmless botanical have been so clouded by stigma. Even the limited studies that have been done suggest marijuana’s potential as an adjunctive therapy for cancer. Marijuana, you need some rebranding. Maybe a cool new name.
Meanwhile, in treating J with pot, we are following the law—and the Hippocratic oath: primum, non nocere. First, do no harm. The drugs that our insurance would pay for—and that the people around us would support without question—pose real risks to children. For now, we’re sticking with the weed.
Why I Give My 9-Year-Old Pot, Part II
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.
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