autism

I’ve got a golden ticket form the Pennsylvania Department of Health. It permits me to possess and use medicinal marijuana to treat my son Leo’s autism.

autismPennsylvania is one of the first states to include autism as a qualifying condition in its medical marijuana program (which Governor Tom Wolf signed into law in April), and is offering special protection for parents and caregivers who procure cannabis from outside the state until local dispensaries open in 2017. It’s the only permission granted by any state, in writing, to import cannabis.

However, making the round trip to Colorado or other legal states to secure the best medicine I’ve found for autism—cannabis oil—is an obstacle course. Once we leave Pennsylvania, we enter hostile territory where we have to fend for ourselves in order to make it back home with liberty intact and medicine for our children in our hands.

Pennsylvania’s Safe Harbor Act was created in a good-faith effort to quickly facilitate the procurement of medical cannabis for children who desperately need it. Campaign4Compassion and state legislators—particularly State Representative Russ Diamond—pushed hard to make autism a qualifying condition.

But the danger is in the journey. If we’re caught with cannabis outside of Pennsylvania, the Golden Ticket is just another piece of paper. If we’re pulled over in Oklahoma or caught inside an airport, we could be treated like anyone else with weed in non-legal states—like a criminal.

Welcome, autism parents, to the War on Drugs, where the absurd concoction of laws standing between a plant and our kids’ better future is darker than any fiction. In many states where medical marijuana laws have passed, people living with autism still risk arrest and prosecution.

There are more children with autism than ever before. M.I.T. senior research scientist Stephanie Seneff has woefully predicted that by 2025 half of American children could have an autism spectrum diagnosis if the incidence of autism— now one in 68 children, according to the CDC—continues to increase at the current rate. All Americans, not just caregivers, will feel the impact of autism over the next 10 years.

Autism is a disability that often requires lifelong care at a cost of millions of dollars per individual. For all of the awareness and energy put into the Zika virus and other trending health threats, autism is a much more pressing problem. But, as with climate change, many people fail to realize autism’s true danger and massive impact.

Those of us who care for autistic people have witnessed the real benefits of cannabis. We know that it works—just like we know when other therapies are successful. This is not the wishful thinking of a parent without enough sleep; preclinical research and voluminous anecdotal evidence strongly suggests that medicinal cannabis decreases the immediate symptoms of autism while working long-term to repair neurologic pathways.

In his groundbreaking 2015 research, “The Endocannabinoid System as it Relates to Autism,” Dr. Christian Bogner postulates that a damaged endocannabinoid system in children with autism could be the cause of their illness, and that whole-plant cannabis both treats the symptoms and repairs the underlying pathways of autism with limited intoxicating effects. Cannabis medicine may be the missing link and the most cost-effective way to treat the growing population of patients suffering from autism; families and state agencies could see a drastic reduction of expenditures after the implementation of appropriate cannabis treatment programs.

Pennsylvania’s Department of Public Welfare 2014 Census Update identified more than 300,000 patients in the Keystone State with an autism spectrum disorder (ASD) diagnosis. Many could be helped by cannabis. I know this because it’s had a positive effect on my son.

cookingwithleoLeo suffers from debilitating anxiety, obsessions and compulsions, and severe hyperactivity. The first day that I gave him his cannabis medicine (in the form of oil or tincture), we sat on the couch together and watched a movie, and he snuggled with me for the first time ever. Cannabis helps ease autism symptoms immediately, and is likely working to repair overall neurologic function. It’s the perfect addition to our natural healthy diet treatment philosophy.

Parents of autistic kids are already subject to society’s judgment and Child Protective Services visits for the behaviors our children sometimes engage in, like wandering and aggression, and shouldn’t have to bear the additional burden of traveling to a legal state to procure medicine. I can’t help but wonder, when I go to other states, if the caregivers there are supplying us with cannabis products that are actually safe and appropriate for our children—or are they just black-market drug dealers trying to capitalize on our desperation and naiveté?

As caregivers, we have no way to legally purchase actual medical marijuana in another state. The few states that offer reciprocity only do it for registered patients; my Pennsylvania Safe Harbor letter doesn’t count. Licensed growers and caregivers in Colorado—and everywhere else—risk their own permits if they supply me with anything they know I’m going to travel with. Technically, if I tell them I’m taking the marijuana home, they can’t sell it to me.

Since the letter says Leo’s cannabis has to be “lawfully obtained,” I need to get a receipt. That means walking into an adult-use retail store in Colorado, Washington, Oregon or Alaska. Otherwise, who’s to say I didn’t just score it on the street?

Also, I have to shop for Leo without him there. It’s not the best situation. Frankly, it feels a lot like seeing my old pot dealer, or walking into a head shop and having to say “water pipe” instead of “bong” for fear of getting kicked out.

I wish my Pennsylvania Golden Ticket offered real prospects of obtaining the cannabis products that Leo really needs. I also wish we could get police escorts from airports to our homes. And if some other law enforcement entity catches us, I would hope Pennsylvania would help out.

Women, as mothers and caregivers, are on the front lines of this war on cannabis every day. Our fears, concerns and stress are compounded if we have to imagine being separated from our children. Still, we take those risks to do whatever is necessary to heal our loved ones.

Next year, cannabis oil will be sold in Pennsylvania. Until then, me and about 100 other Pennsylvania moms will be putting everything on the line.

Erica Daniels’ book, Cooking with Leo: An Allergen-Free Autism Family Cookbook, is available here.

 

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About Erica Daniels

Erica Daniels lives outside Philadelphia with her two children. Her book, Cooking With Leo, will be released in January.

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