“This is our dream space,” says Brooke Goodspeed, her voice echoing through the empty storefront. Once a mainstay of Narberth’s Haverford Avenue, the former Mapes 5&10 has been stripped to its bones, leaving crumbling brick, webs of wires and floors made of plywood. It’s tough to see why Goodspeed is so excited. Then again, Goodspeed’s 7-year-old son is autistic and has Down syndrome, so she often sees potential where others see only problems.
Together, Goodspeed and Erica Daniels are turning the vacated Mapes into Great Expectations Together, a nonprofit community center created for and staffed by special-needs kids and adults. GET will have a coffee shop, a sensory-friendly play space, an arts area, a library, and other features. If they can raise the money needed to renovate the building, Daniels and Goodspeed could open GET before the end of 2018. “This is going to be fantastic,” says Daniels, whose 13-year-old son has severe autism.
GET should get a warm welcome in Narberth, even if the moms are doing something controversial. Since 2016, the year Pennsylvania legalized medical marijuana, they’ve been treating their sons’ autism symptoms with cannabis. The marijuana they use contains both CBD and THC, the psychoactive ingredient that makes people high. In people with autism, THC seems to have the opposite effect, calming excitability, reducing time spent on self-stimulating behaviors and limiting the number of meltdowns, which can last for hours. It seems to work the same way stimulants like Ritalin calm those with ADHD. THC appears to soothe autistic brains, making them better able to engage with the outside world.
Alas, there’s almost no clinical research proving any of that. Instead, there are the stories of trial, error and success shared between families impacted by autism. Daniels gained notoriety outside the region when she allowed a national news program, Viceland’s Weediquette, to document her son’s experience with cannabis and the process of acquiring it from a grower/processor in Colorado. The episode aired in April 2017, after which Daniels was dubbed the “canna-mom.”
Marijuana wasn’t the first choice for Daniels or Goodspeed. They investigated all kinds of treatments—pharmaceuticals, homeopathy, diets, private schools and various therapies—before trying cannabis. Daniels even wrote Cooking With Leo: An Allergen-Free Autism Family Cookbook. It wasn’t enough. “Most autism moms scrutinize every traditional and nontraditional therapy available,” Goodspeed says.
For Daniels and Goodspeed, medical marijuana is kid-tested and mother approved. They meticulously tracked their sons’ dosages and reactions, creating journals worthy of clinical trials. They saw positive results within 30 minutes of giving their sons tiny drops of cannabis oil. Both kids became calm and stayed that way, and their symptoms have continued to improve over time. Before cannabis, Daniels’ son had epic meltdowns. “He’d throw himself on the floor, cry and scream for two to three hours,” she says. “That happened almost every day.”
After two years of cannabis use, says Daniels, his meltdowns have reduced to only a few per month.
Daniels and Goodspeed have largely immunized themselves against mommy shaming, deciding to go public about their use of marijuana so they can share their hard-earned knowledge with other parents. Through her nonprofit, Hope Grows for Autism, Daniels has educated caregivers around the world about medical marijuana and autism. Access remains a primary problem. In Pennsylvania and elsewhere, dispensaries aren’t stocking the organic, THC-CBD strains that work best on autism symptoms. “A lot of it is about money and what’s selling best,” says Daniels. “When you have a medical marijuana market that is 90 percent focused on chronic pain, that’s what will be grown first.”
Daniels and Goodspeed are working with the local cannabis business owners to get autism-friendly products into dispensaries. They also partnered with Releaf, an app created by Philadelphia’s Greenhouse Ventures. Releaf helps cannabis users track medical marijuana’s effects on their medical symptoms. Using a special code, Hope Grows for Autism will collect observational data to see what formulations and cannabinoids works best for autism. That anecdotal evidence will be a big boon to research on autism and cannabis.
“My son is not just a 7-year-old—he’s a 7-year-old with severe autism who has a life expectancy of 45 and a disorder that has no cure,” says Goodspeed. “The average autism mom giving cannabis to her kid has read the research, compared it to other drugs and made a decision based on what’s best for her child.”