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The challenges faced by parents of children with autism can be overwhelming. Their children are often unresponsive and disconnected from reality. Other symptoms include dramatic behavioral disturbances, including self-abusive or violent acts and the inability to sleep, speak, or have appropriate social interaction. Effective solutions offered to parents of children with autism have been few.
Erica Daniels, a single mother from Narberth, Pennsylvania, understands the rigors of parenting a child with autism. Born in 2007, her son Leo struggled with chronic health issues beginning at roughly 19 months of age. Leo became withdrawn and agitated. When he was diagnosed with autism at 21 months, Daniels was three months pregnant with her second child. She recalls this period as a time when “a light seemed to go out” in her son, and it never ignited again.
Daniels began consulting with experts, enrolling Leo in therapy, trialing ineffective medications and managing the side effects, and performing extensive research in an attempt to reach her son and improve his quality of life.
With a degree from Syracuse University and a career in advertising, Daniels didn’t know anyone with a child with autism and had little clinical insight to help her cope with Leo’s constant motion, unpredictable behaviors, nonfunctional vocalizing, and anxiety. Seven years ago, her marriage dissolved and, alone, she has faced the unique challenges of caring for one child with autism and another child—her daughter, Scarlett—without.
Children with autism are at a greater risk of suffering from one or more chronic gastrointestinal disorders. Leo suffers from severe food allergies and sensitivities. Feeding him a healthy diet that was agreeable to his system became essential.
Unexpectedly, Leo was interested in being in the kitchen with his mother. While Daniels experimented with new recipes, Leo would engage with her. Despite poor motor skills, he sought to complete small tasks such as cracking eggs and gathering ingredients. Mother and son cultivated a vital connection over food. In 2017, Daniels published Cooking With Leo: An Allergen-Free Autism Family Cookbook to help other families.
Empowered by nurturing Leo’s health through his diet, Daniels gained a sense of purpose by serving the autism community.
She then learned about cannabis. “I only heard about autism and cannabis after the law [allowing medicinal cannabis] was passed in Pennsylvania. I began to research and talk to other parents,” Daniels says.
She eventually gave Leo medical cannabis, administered as a sublingual spray. The results were both positive and dramatic. His daily “meltdowns” decreased, his anxiety lessened, and his speech improved, with the effect lasting for hours. Over time, Leo has continued to respond well to cannabis and has had some reduction in symptoms.
“My personal experience tells me that cannabis may likely be the most effective frontline treatment for symptoms associated with autism. It has been that for my son. After 12 years of trying different treatments, cannabis has been the most effective treatment for Leo. There are little to no side effects, and it is natural,” Daniels says.
Research supports her experience. According to a study published in Neuron in 2013, symptoms of autism may be caused by inhibited endocannabinoid signaling due to mutations in neuroligins and neurexins.1 And a groundbreaking study that followed 188 children with autism spectrum disorder (ASD) over six months in Israel, where cannabis research was approved in 2007, showed remarkable results in relieving symptoms of “restlessness, rage attacks, agitation, speech impairment, cognitive impairment, anxiety, incontinence, depression, and more.”2 The researchers concluded that medical cannabis treatment in ASD patients appeared to be a “well-tolerated, safe, and effective option.”
Studies suggest doses are unique to each patient. Daniels says, “Leo’s dose has increased over time as his tolerance increases, which is very typical with cannabis medicine. During more stressful times, more THC is typically needed. Overall, the formulations Leo uses are fairly consistent and at the lowest effective dose. Determining an individual’s lowest effective dose can take some time and commitment but is well worth it in my opinion.”
Leo takes a cannabis tincture sublingually four times each day.
“The hardest thing for parents to overcome is finding medical community support and educational information, which is why I founded the nonprofit, Hope Grows for Autism, in 2016,” Daniels says.
The Hope Grows community of families and caregivers now has more than 1,000 members in Pennsylvania. Among the issues about which members seek support are difficulties in working with their children’s schools. “Pennsylvania’s Department of Health has done a good job giving parents the right to give cannabis meds at school themselves. There is no requirement to disclose medical cannabis patient status to anyone. It is a private health matter like anything else; however, many parents choose to share about it because of the benefits they are seeing,” Daniels says.
One of Daniels’ aims for this year is to create clinically based online educational videos for physicians, caregivers, and dispensaries. “There is no specific autism and cannabis clinical website,” she notes. “The end contact is the dispensary, and often they do not know how to successfully treat autism patients.”
It’s been a tremendous challenge. “Responding personally to each family became overwhelming and impossible,” Daniels acknowledges. “To keep up with helping as many families as possible, I needed to disseminate the information into broader forums and access. Creating tools such as books, online educational resources, cannabis medicines, and other products is the best way for me to reach as many families as possible with an actual solution.”
But those efforts, she says, will only take things so far. “I can provide all the educational information in the world, but if there’s no access to appropriate cannabis medicines, families are still lost, wasting time and money and hope,” Daniels says.
In 2014, Daniels founded Autism Advisors LLC, a research and advisory firm providing strategic solutions to health care professionals, product manufacturers, and universities, empowering them to make better, data-based decisions involving autism. Daniels succeeded in partnering with a lab, Ilera, to create an appropriate medicine for autism patients, which was released in 2019.
The goal is that HOPE will soon be available in other markets. “The development of Ilera HOPE is an example of consistent conversations and expressing the needs of the patients,” Daniels says. Autism Advisors conducts surveys to measure the effectiveness of treatment and guide new development. Initial survey data look promising, indicating that almost 70% of Ilera HOPE users reported improvement in quality of life.
Daniels also was instrumental in uniting Zelda Therapeutics, an Australian company, with Children’s Hospital of Philadelphia for the United States’ first upcoming observational study of medical cannabis and autism.
Despite grass-roots research efforts and documented game-changing results from cannabis, a strong stigma exists. “It amazes me that existing research does show improvement of symptoms of autism, yet still some members of the medical community and lawmakers actively prevent patients from accessing medical cannabis for autism. [For example,] Ohio recently denied autism as a qualifying condition,” Daniels says. “And it amazes me that researchers are stuck on high-CBD or CBD-only research when patient experience shows THC plays an important role in cannabis treatment for severe autism.”
What she finds equally astounding—and hopeful—is “how many families, including my own, have been able to avoid residential treatment facilities for their loved ones by using medical cannabis.”
Leo is now a teenager. The severity of his symptoms suggests that he will need supervision, support, and autism care for the remainder of his life. Despite more than $175 billion spent annually in the United States for adult services, the Centers for Disease Control and Prevention reports that in the absence of more-effective interventions, the cost of caring for adults with autism is anticipated to rise to $461 billion by 2025.
Daniels trusts physicians will partner with patients for better outcomes. “I strongly believe that it is the responsibility of physicians who treat autism patients to know about medical cannabis and other complementary treatments,” she says. “Parents are using these treatments anyway; they are often afraid to tell their doctors for fear of judgment, or worse. When you have a condition such as autism—with no cure in sight—you need to think outside the box for your patients.”
— Michele Deppe is a freelance writer based in Seattle.