Katelyn Castleberry’s two sons, 8 and 9, were surprisingly quiet as she spoke on the telephone for well over an hour. That’s because one of them is mostly non-verbal and the other loves taking things apart.
“We call him the reverse engineer. You wouldn’t believe what my house looks like right now,” said Castleberry in a telephone interview with Marijuana.com.
Both of her boys have autism spectrum disorder (ASD), a set of complex neurodevelopmental disorders that affect brain development, communication, social interaction, language acquisition, and more.
Based on a new estimate released by the US Centers for Disease Control and Prevention (CDC) in April 2018, one in 59 children in the U.S. have been diagnosed with ASD — up from one in 150 as noted in the year 2000.
Castleberry, who lives in New Orleans with her husband and two sons, thinks the increase could be due to environmental issues, but more likely because experts are better at spotting it. “In the past, children were lumped into one group and all referred to as ‘retarded.’”
“There are a lot of theories out there about this complex syndrome,” Castleberry said in a lilting southern accent. “One of the mysteries to me is this: when there’s a plant that can help with autism’s symptoms and behaviors, why isn’t it accessible to everyone who needs it?”
Castleberry is state chapter coordinator for Mothers Advocating Medical Marijuana for Autism (MAMMA), a grassroots group of mostly moms advocating for therapeutic cannabis as a safe, affordable and effective medical option for ASD.
“The argument about ‘giving dope to kids’ doesn’t wash anymore,” Castleberry said. “There’s too much science out there confirming that cannabis helps treat autism.”
Dr. Seth Ammerman, clinical professor in the Department of Pediatrics at Stanford University, however, believes parents should be cautious.
“The big issue is that there is no formal research or clinical trials on the use of cannabis for ASD. And without evidence, there’s still a lot of trial and error involved in dosing and strains as well.”
Ammerman told Marijuana.com that the medical community was looking forward to the results of cannabis-related autism research currently underway in Israel.
“It’s very exciting,” he said. “We wish we could do the same here but under the current situation, it doesn’t look like much is going to change.”
MAMMA keeps a list of 10 states, along with Washington, D.C., that permit cannabis as an ASD remedy. Only six have listed autism as a qualifying condition and allow access to the whole plant: Delaware, Georgia, Louisiana, Michigan, Minnesota and Pennsylvania. Another four states — California, Florida, Oregon, Massachusetts — and Washington, D.C., allow it to fall under the classification of debilitating or neurological conditions. Some, such as Georgia, cap the THC content at 5 percent.
Founded in 2014, MAMMA keeps track of published studies, as well as research and clinical trials going on around the world, on its website. Currently there are active MAMMA chapters in Arizona, Colorado, Louisiana, Ohio, New York. and Texas.
Tiffany Carwile, 27, is a founding member of the Ohio MAMMA chapter.
Her 4-year-old son, Jaxsyn, has violent outbursts, seizures, chronic pain, and is prone to post-traumatic stress and Tourette syndrome — all co-morbid conditions, many of which are qualifying conditions in various medical marijuana states.
“The worst symptoms all rolled into one. It’s mind-blowing that autism, as a condition of its own, is not on the top of medical marijuana lists in every state,” Carwile told Marijuana.com in a phone interview from her home in Bryan, a town of fewer than 9,000 people in northwestern Ohio.
Carwile does not give Jaxsyn any pharmaceutical medications. He loves singing, although he is otherwise almost non-verbal.
“Pharma drugs turn him into a zombie. I can’t do that to him,” said Carwile. “He needs medicinal cannabis, and that’s what I’m fighting for.”
She’s currently writing a petition to give to Ohio’s Republican Gov. John Kasich.
“I’m explaining that pharmaceutical drugs don’t treat the core of autism or target the behaviors that occur in the chronic side of the spectrum,” she said. “It’s complex, but there’s growing evidence that cannabis is a viable treatment.”
Carwile said that if the pro-legalization movement for recreational cannabis focused on medical cannabis, “we’d get marijuana off Schedule I in no time… by a landslide.”
“We want the plant to enrich all of our lives … those who want it and those who need it,” she said.