Autism is complicated. With a slew of symptoms that affect each patient differently and at various levels, treatment has never been straightforward. Patients and their caretakers often try a variety of approaches—usually in tandem: from behavior modification therapies and anti-psychotic medications to special diets, but there is no "one" true cure. According to the UK's National Autistic Society, "Autistic people see, hear and feel the world differently to other people. If you are autistic, you are autistic for life; autism is not an illness or disease and cannot be 'cured'. Often people feel being autistic is a fundamental aspect of their identity."
Cannabis, as a medicine, is similarly complex; while there's a lot we understand, there is still more that researchers are trying to comprehend about the endocannabinoid system, or how the compounds found in cannabis—it isn't just THC and CBD—support healing for people with various conditions. MMJ, or medical marijuana, has been used in the treatment of a variety of diseases and conditions, including easing anxiety, treating glaucoma, and easing the severity and number of seizures in those with epilepsy.
Many are also finding cannabis, in one form or another, effective in easing symptoms of a variety of conditions that have not yet been thoroughly researched; autism is one of these, with many getting legal access to medical cannabis—or sourcing it illegally—and using it to treat those with the most severe symptoms. Bringing the two, cannabis and autism, together, was never going to be an easy or straightforward endeavor. However, parents of severely autistic children who have exhausted all other options have described medical cannabis as a "life changing" therapy.
Three mothers have organized with the help of an Israeli researcher to build a global database with the goal of learning more about how different strains of cannabis, as well as different dosages and methods of use, affect dozens of patients already legally using medical cannabis to treat autism. Their objective is to improve understanding of how these medicines affect various symptoms present in people on the autism spectrum, and to have a better idea of what guidance they can provide for parents and caregivers looking to try medical cannabis therapies for autism, and on a larger scale, advocate for policy and educate policy makers.
One of these women, Abigail Dar, an Israeli advocate for people on the autism spectrum who works with the non-profit Kvutzat Hashavim, has been pushing for autism to become a qualifying condition for medical cannabis in Israel. She is also the mother of Yuval, an autistic 23-year-old. "When he was 16, he started having seizures and along with them came behaviors that make the difference between being able to live and take care of your child and giving up, hospitalizing or institutionalizing him. We lived through six terrible years where I had to use my husband and my other two boys as 'bodyguards'—never knowing when Yuval would have an outburst." She tells me about the misery and guilt Yuval would feel as a result of his actions—saying they came from somewhere that was "not him."
In October of 2015, Dar was finally able to access medical cannabis for Yuval after appealing for "mercy"—autism is still not a qualifying condition in Israel. Since then, Dar says her day-to-day is much different, with less than a handful of violent outbursts in the 18 months since Yuval began treatment. "He is so much more calm, smiling, attentive, [and] communicative," she says.
Dar says that she had to determine the best methods and strains to use without much guidance, but she did have one starting point: Israelis were already treating epilepsy, which is often present in people with severe autism, with high-CBD strains that are thought to be safer; the idea being that CBD isn't psychoactive in the way THC is. Therefore, it's less "risky" with patients who have difficulty communicating.
After some challenging trial and error, Yuval found relief through the right balance of strains and dose timing. Despite this success, she still needs to make changes in dosage and strain from time to time as Yuval develops resistance.
In early 2016, Dar's story was featured on a Hebrew news show. After the segment aired, dozens of parents reached out looking for guidance. "We started gathering data and managed to get access for over 100 [people]," she says. Other families began to see the same benefits: "Every day there is a parent telling me about dramatic changes—he slept the whole night, he didn't [have an] outburst, he stopped hitting and biting himself, answered 'yes' to my questions," she says. "Maybe small or irrelevant things to a normal parent, but it's [a huge relief] for us and our kids."
Sharon Imberman, one of Dar's collaborators on the data gathering project, has been advocating for medical marijuana in Israel as well, personally guiding more than 300 families who are using cannabis to treat children with seizures. Imberman's son, Bar, is autistic and also has pharmaceutical-resistant epilepsy. Bar used to have to sleep in a room with his parents in case of a seizure, but after trying cannabis oil, he can now sleep through the night on his own, Imberman tells me. She estimates that adding vaporizing alongside the oils eased his symptoms by about 80 percent.
But Imberman and Dar knew they needed more research to support their claims—not just anecdotal evidence—to achieve a qualifying condition title, which allows legal access to weed. Thankfully, Israel is among the leaders in medical cannabis research, beginning with the isolation of CBD in 1963 and the isolation of THC the following year, so they were uniquely positioned to find a researcher to collaborate with.
In their search, they found Adi Aran, who already had a research proposal and had started using cannabis oil from high CBD strains sourced from three Israeli growers as part of a pre-trial. Dar tells me that through this group of kids and adults (found through the psychiatrist that originally recommended Yuval try MMJ), "we gathered more understanding regarding what was and wasn't working for kids with behavioral issues. It was clear to Sharon [Imberman] and myself that high CBD strains or 'clean 98 percent CBD' like the ones chosen by Dr. Aran, weren't necessarily working for those [with behavioral issues]. We found greater success with other strains."
As pointed out in Haaretz coverage of the study, officials and medical professionals alike are still hesitant to prescribe cannabinoids, "even after their intoxicating qualities are neutralized." Imberman, who does more of the hands-on work with helping families treating their children for both epilepsy and autism with medical cannabis, also stresses the individuality of each case, that there is no one strain or cure but instead a combination.
"We have our vast knowledge and experience with seizures, added to treating, guiding, and data gathering with over 100 Israeli kids and adults with severe autism. Treating [these] patients made it very clear to us that high CBD strains, in many cases, cause the opposite results, even worsening symptoms," says Imberman.
Being concerned that the clinical study would do more harm than good, they decided to try and raise the funds needed for a clinical study in order to influence the study design and strains given in a way that their experience made them feel was better for the long-term well-being of the people taking part in the study.
They then reached out to Mieko Hester-Perez, an American medical cannabis advocate who's been vocal about using it to treat her son, Joey, for autism. Dar had seen a 2009 clip online of Hester-Perez being interviewed on Good Morning America, where she had also mentioned that a clinical study was necessary to gain legitimacy of the treatment, which was incredibly controversial at the time. Hester-Perez was an ideal third addition to support their goals and bring international interest to the need for a clinical study.
Ultimately, the three women were unable to raise enough money to support a new study, but they set aside the $11,000 raised to help benefit future research. As a result of their efforts, they met Dedi Meiri, an Israeli researcher at the Laboratory of Cancer Biology and Cannabinoid Research who is at the forefront of studying medical marijuana. Meiri had already been gathering data from people treating other conditions with medical cannabis, and is now tracking more than 70 people using it to treat autism in Israel.
They're hoping with the help of fundraising to bring their data collecting global, which would allow them to take samples of medicines people are utilizing—strains and medicines vary greatly in their makeup, even within one locality—and track the results for people with a variety of symptoms in a condition that varies greatly from person to person. This will allow them to better guide individuals hoping to use medical cannabis to treat Autism, as well as provide information to researchers and show effects to medical professionals and policy makers, and help bridge the gap between anecdotal evidence and a formal clinical study.
As they continue to recruit more people and gather more information, Hester-Perez believes the data will help support physicians who diagnose autism. "It's one of the most groundbreaking and unconventional treatment options for families," she says. "And it's becoming the treatment of choice—with or without a physician's guidance.
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