In the dark, Christy Zartler plucks a pair of jeans and a T-shirt from the closet and lays them on the bed. She opens the blinds, and sunlight fills the pink bedroom on a quiet Richardson street.
“Hey, girl,” she sings. “Guess what? It’s Friday! Friday means fun day!”
Kara, 17, sits up and stares in her mother’s eyes. Then she brings her palm to her ear, poised to start doing what, by now, more than 70 million people have seen her do on Facebook.
“No,” her mother says.
Kara starts smashing the base of her palm against her ear. Over and over.
Kara, a 98-pound girl with gray-blue eyes and short brown hair, has severe autism and cerebral palsy. The blows are a symptom of her autism, though no one knows what triggers them. Right now, she’s not hitting that hard. At her most intense, though, she makes herself bleed and breaks her own bones. It takes two people to restrain her while a third person grabs her “rescue” meds. If she’s able to wriggle free, she fights back. She’s bitten into the bone of her mother’s finger. Her school has documented her hitting herself 3,000 times in one day.
The family has tried prescription drugs, but the only remedy they have found that soothes Kara quickly and effectively is marijuana.
Her father, Mark Zartler, gives it to her using a vaporizer attached to a medical mask. Just owning the drug is a crime punishable by six months in jail.
Can marijuana help?
The Zartlers want Texas lawmakers to pass a bill, currently on file in Austin, that would legalize marijuana for autism patients under a doctor’s care. Such a bill is unlikely to pass in the Republican-controlled Legislature, where many conservatives remain unconvinced the unproven treatment is a good idea.
To persuade lawmakers, Mark and Christy decided to make a video last month about their struggle — despite the possibilities of getting in trouble with the police or Child Protective Services.
The video shows Kara punching herself and yelling. Mark places a clear-plastic medical mask over Kara’s nose and mouth and fills it with marijuana vapor. Within minutes, Kara is calm.
Mark posted the video to his Facebook page. It went viral and made national news.
“Somebody has to be the poster child,” Mark Zartler said earlier this month while sitting at the family’s kitchen table, next to a cross on the wall. “This is the only medicine that will calm her down when she’s aggressive. It’s certainly safer than her punching herself in the face. It’s certainly safer than her autism drugs.”
Mark knows he may go to jail over his advocacy. He has tried to limit his criminal exposure by getting rid of pot brownies, cookies and oils — which he says are effective for Kara, but could be considered felonies. He keeps only a small amount of marijuana in the house, with the understanding that anything less than 2 ounces is a Class B misdemeanor.
The parents want lawmakers to see the dilemma they face: If they allow Kara to hit herself, they’re negligent. But the best method they have to get her to stop makes them criminals.
Neither parent has a criminal record, except for the time Mark was arrested for drinking in college.
Two weeks ago, a woman working for CPS knocked on the Zartlers’ door, and Mark showed her his marijuana vaporizer. Now, the worker wants the parents to take drug tests and meet with her supervisor. The Zartlers have hired an attorney.
Mark, a software engineer, and Christy, a pediatric nurse, married in 1994. Christy hoped she’d get pregnant right away. But five years went by, and it didn’t happen. She grew depressed. Every Mother’s Day stung.
The couple eventually spent $25,000 on in vitro fertilization. Christy became pregnant on the first try with identical twins. They felt it was a blessing from God.
The baby girls — Keeley and Kara — were born three months premature. Keeley developed healthily, but at 15 months, Kara was diagnosed with cerebral palsy. Still, she grew well for the first three years of her life. She sang along to music. She called to her mom “Mama,” and said “bubbles” when she got in the tub. Her parents logged the number of words she spoke: 68.
But around age 3, Kara stopped speaking. She made less eye contact. She started hitting other kids. By 4, she was punching herself in the head. Her fits would come daily or weekly — without notice — and sometimes last for hours. Her parents took turns holding her arms back for 30 minutes at a time.
“Autism took her,” Christy said. “She’s no longer a person that can talk and tell me how she feels. You feel grief for the child that’s living right in front of you.”
One in 68 American children has autism, and self-injury affects about 28 percent of children with autism disorders, according to the U.S. Centers for Disease Control and Prevention. However, Kara’s parents say her symptoms are more severe than her peers’.
Kara started taking Risperidone, an antipsychotic medication typically used for schizophrenia, at age 6, and it helped. Over time, though, she needed a higher and higher dosage as her body built up a tolerance.
When Kara was 9, Christy recalled, a pharmacist was shocked at the dosage.
“This is what I’d give a 2,000-pound horse,” she remembered him saying. “I’d never give this to a 49-pound girl.”
Risperidone turned Kara into a “zombie,” her parents said. She drooled and had less interest in her surroundings.
Kara’s self-punching fits continued. She broke her nose and, another time, her eye socket. In one instance, she ended up in an emergency room and was given morphine. Even that drug couldn’t stop her.
Now she has “cauliflower ears,” swollen and deformed, like those of a boxer.
When Kara was 11, the Zartlers’ pot-smoking neighbor asked if the family had ever given her marijuana. Mark and Christy looked at each other and laughed.
Even so, they accepted his offer of a weed brownie. A few weeks later, they gave Kara a piece of the brownie before a family trip to Galveston.
Usually those trips were filled with Kara punching herself and yelling. But this time, she was calm the entire five-hour ride. She made more eye contact and took an interest in looking out the window.
“We were euphoric,” Christy said. “The cannabis helps her leave her autistic traits and enter this world of communication and existence.”
Over the past six years, Mark and Christy said, cannabis has proved to be the only medicine that works every time. Kara’s doctors told the family it is good they found something that works, but the doctors could not recommend breaking the law.
The Zartlers considered moving to Colorado — or another of the 28 states where medical marijuana is legal. But both Mark and Christy take care of their elderly parents here.
In the past 12 months, the Zartlers said, Kara has developed faster than she had in the past nine years.
Kara makes eye contact more often. She can pull her pants up and take them off. She can flip a light switch. Some days, she can go to the bathroom by herself. She can use a fork.
Also, her parents said, her personality has emerged. She’s started rolling her eyes more. When Christy joked that Kara, who loves food, was going to “eat us out of this house,” Kara looked over and laughed.
“Oh, my God,” Christy said. “I’ve never known my girl. This is the first time I’ve gotten to really meet her and meet her personality. She’s sassy.”
They attribute these gains to cutting back her Risperidone and giving her regular doses of a cannabis oil called CBD, which is legal and creates no high because of its low levels of THC, the psychoactive compound in marijuana. The family uses ground-up marijuana leaves, which are illegal and contain high levels of THC, as Kara’s emergency “rescue.”
The Zartlers had never been activists. But they thought it was cruel that they could be arrested just for helping their child. They wanted the law to change so Kara could someday live in a group home and still receive the medicine she needs. And they wanted to help other families who care for children with severe autism.
Mark pondered making a video for months before deciding to do it. If people saw the Zartlers’ reality for themselves, maybe they would understand, he thought. This could be Kara’s purpose. This could be why God gave her to them.
Mark let his dad know about his idea.
You need to stay quiet, his dad said. You’ll get arrested.
But Mark was tired of being quiet.
Advocating for pot
“Frankly, this is an uphill battle,” said Sen. José Menéndez, D-San Antonio, who authored the Senate bill. “In a state where we value people’s independence and we value professional medical advice, it should be easy to say doctors know what’s best, but … politically, some people are afraid of being seen as being pro-pot, if you will.”
During spring break in March, the Zartlers dropped off Kara at a weeklong camp and headed to Austin with Keeley to lobby Republican lawmakers who control both chambers.
They met in the Capitol cafeteria with their group, Mothers Advocating for Medical Marijuana for Autism. MAMMA was started in Texas in 2014 and now has 300 member families in the state. A dozen of the moms wore black-and-red T-shirts. Some brought their autistic children.
Many wore crosses and described themselves as conservative Christian Republicans. Like Mark and Christy, they never imagined they’d lobby on behalf of marijuana legalization until they saw it helped their kids.
In a stairwell outside the House floor, the Zartlers met with Rep. James White, a Woodville Republican. Nearby, a historic flag hung, inscribed with the words LIBERTY OR DEATH.
White said he’d seen Kara’s video and was interested in what the research showed.
“If we had validated, peer-reviewed research, obviously, yes, I will support this,” White said. “Why would I not support it?”
Mark, a Republican himself, understood why a guy like White would be hesitant to back them. He explained that doctors and researchers are in a “catch-22.” They want to study marijuana, but their hands are tied because it’s illegal.
“We came out, and now CPS is coming after us,” Mark said. “If they come out and support it, they’re taking a career risk.”
Still, White agreed to sign on as a co-author of the House bill.
A mom in the group hugged White. The Zartlers teared up.
Mark and Christy spent the day hustling from one legislator’s office to another, passing through portrait-lined halls filled with tourists and schoolchildren. Over and over, staffers told the family they were moved while watching Kara’s video.
“If you’re not feeling it, you’re not living,” said Terry Franks, chief of staff for Rep. Jason Isaac, R-Dripping Springs, who also sponsored the House bill.
But not all lawmakers were encouraging.
The Zartlers met with a staffer for Rep. Stephanie Klick, R-Fort Worth, a former nurse who championed a law last session that legalized CBD, a cannabis extract that creates no high, for epileptic patients. In her office, a gold frame encased a photo of her and the words: “FORMER FETUS.”
Mark told the aide about his situation with CPS. He was worried about what could happen.
“All of a sudden, I’m a horrible criminal,” he said. “They’re gonna make me move out of the house because I’m an abusive father. It makes no sense.”
The staffer, who permitted a reporter to observe the exchange on condition that he not be named, was sympathetic but said his boss wasn’t ready to support their cause.
“At some point, they’re gonna figure out why it’s working,” Mark said. “But until that point, we’ve already figured out that it is working.”
Outside, none of the parents smiled as they flipped through their notes for their next meeting.
“It’s politics,” Mark shrugged.
He looked at his cellphone and saw he missed a call from CPS.
The political landscape
The portion of Texans who believe marijuana should remain illegal for both recreational and medical uses has dropped in the past two years, from 24 percent to 17 percent. And 41 percent of Texas Republicans would legalize marijuana for recreational use, according to a February poll by The Texas Tribune and the University of Texas.
Broad segments of the Texas GOP’s base want legalization of some sort. Among them are libertarians and military veterans. About 1,400 veterans signed a petition asking Gov. Greg Abbott to let them use marijuana for post-traumatic stress disorder. A conservative Houston woman in her 80s, Ann Lee, founded Republicans Against Marijuana Prohibition after her son became paraplegic in an accident and she saw how marijuana relieved his nerve pain.
In the current session, Republican politicians have been hesitant to openly oppose the medical marijuana bills.
Neither Abbott’s spokesman nor Lt. Gov. Dan Patrick’s responded to requests for comment. Texas Values and the Eagle Forum, two of the state’s most conservative policy advocacy groups, also declined.
This year, the Republican Party of Texas called for allowing “doctors to determine the appropriate use of cannabis to prescribed patients.”
Even so, the party opposes the House and Senate bills because they would enable people to get high — unlike the current cannabis extract that’s legal because it is low in THC.
“Legalizing drugs is not the answer,” said Michael Joyce, spokesman for the Republican Party of Texas.
The Texas Sheriffs Association’s legislative chair, Jackson County Sheriff A.J. Louderback, pointed to research that he said showed rises in emergency room visits, traffic crashes and unemployment in Colorado since legalization.
“We’re not unmindful of” families like the Zartlers, Louderback said. “But as Texas sheriffs, we see the ability to abuse this is huge.”
A lack of research
Doctors say the link between marijuana and autism needs further study.
“There is a lot of anecdotal evidence from parents like this,” said Dr. Gregory Barnes, the director of the University of Louisville Autism Center. “Unfortunately, there’s not really any research at all in autism that you could hang your hat on, in humans, that would validate those parents’ observations.”
He said the part of the brain that controls self-aggression is filled with cannabinoid receptors, suggesting cannabis compounds could work in those areas. In animal studies, researchers have found such compounds reduced obsessive-compulsive behaviors, Barnes said — but animals don’t hurt themselves the way humans do.
However, Barnes cautioned that THC, especially in high levels, could be “very toxic” and could cause brain lesions in children.
Because the federal government considers marijuana illegal, Barnes said, researchers must spend years and lots of money navigating regulations to study it. The result: Lawmakers don’t want to legalize a drug that isn’t fully researched. But science is delayed by the plant’s illegality.
The American Academy of Pediatrics issued a statement in March 2015 opposing medical marijuana for kids except for “children with life-limiting or severely debilitating conditions and for whom current therapies are inadequate.”
Dr. Seth Ammerman, the statement’s lead author and a Stanford University pediatrician, said the Zartlers are a prime example of why the use of marijuana for autistic children needs to be studied further.
“We certainly need more science,” Ammerman said. “This is a compassionate use issue for families like this. They’ve tried everything and it hasn’t worked. They’re not doing this to neglect or abuse their child — they’re doing it to help their child.”
Kara’s fits come without warning, sometimes several a day, sometimes a few a week. She’s most stable when following a routine, so her parents take pains to stick to a schedule. Weekends are tough.
On a recent Saturday morning, Mark and Christy are at home with their daughters. Kara’s doing one of her favorite things — she kneels on her bed, wraps a yellow blanket around her head and body, and rocks back and forth. Her head hits a pillow her parents have put against the wall to protect her.
Her parents try to get Kara to stop so she can take her medicines. She keeps rocking. Finally, they coax her up. She starts slamming her palm into the side of her head.
Mark and Christy try to calm her. They hug her and whisper to her.
She keeps hitting.
They give her medicine for her allergies and stomach pains. No effect.
In the living room, sitting in a black leather armchair, Kara screams and cries. She pulls her hair and strikes her cheeks and ears.
Kara becomes more agitated. Her cheeks are red and swollen. Scabs on her ears are about to break open and bleed. Mark and Christy decide she needs a marijuana “rescue.”
In the kitchen, Mark grinds the soft green leaves. He measures out a small spoonful and heats it in a vaporizer. Christy fastens a pink helmet onto Kara’s head, and Kara punches her cheeks. Christy places her hands over Kara’s face.
“Yeah, just hit your helmet,” Christy says gently.
Mark arrives with the plastic bag filled with marijuana vapor and attaches it to a medical mask he places over Kara’s mouth and nose.
“Twinkle twinkle, little star,” Christy sings while holding Kara’s hands back as she inhales the vapor.
Mark puts Kara on his lap as he sits in the chair, rocking, with his arms wrapped around her in a bear hug.
After three minutes, Kara is calm. Her fists have loosened. Her frenzied breath has slowed.
“There we go,” Mark says. “Are you good to be on your own now? Let’s let Daddy get up and you sit down.”
She sits in the chair and rocks herself and hums. After a minute, she walks to a spot on the kitchen counter where her parents have placed a tupperware bucket filled with raw rice and red beans. Kara runs her hands through the grains, picking them up and bringing them to her face. She repeats the motion over and over.
A smile grows on Kara’s face as she plays. She’s calm for the rest of the day.