Out of options and out of time, a conservative but desperate mother turns to medical cannabis to help her son. The experience turns her into a national advocate.
Nate on his third day of cannabis, in June 2015. A genuine smile, in Joshua Tree, California.
By Jenni Mai
“Are you looking for indica?”
That was one of the first questions thrown at me when I made my maiden voyage into a California medical cannabis dispensary in 2015. I remember looking at the girl who was waiting on us and thinking, “I don’t know who this ‘Indica’ is, but if she can help me figure all of this out, please send her my way!”
I was desperate, scared, completely ignorant, and admittedly… I even felt a little dirty.
I am a married mother of three! From a pretty conservative family from the Midwest! What will people think of me? What am I doing in here… with my son?
After taking a deep breath, I remembered that my son needed me to figure this out. We were out of options and out of time.
“He’s just too aggressive”
Three months before this scene we were living in Missouri, where my family, Wisconsin natives, moved due to a career advancement opportunity for my husband. We thought this relocation 450 miles down I-55 would be great for our family, but it turned into a nightmare.
All three of my sons are on the autism spectrum. Nate, my guy in the middle, is by far the most severely impacted of the three. He’s nonverbal and had a long history of extreme aggression and self-injurious behaviors. We made countless (failed) attempts to get any sort of short-term inpatient treatment to keep him and our family safe. We soon found out the only thing available to him was more and more pharmaceuticals and less actual mental health or social service help.
His high school decided he was not a candidate for the transition program that should have been available to him until he turned 22. Instead, they handed me his diploma when he was 18 and sent us on our way to nowhere. A day program that reluctantly took him in ended up sending him home early on an almost daily basis because they also apparently could not handle his level of need.
Just a few months after starting, they wrote him off for good. He’s just too aggressive. Then things got worse.
During this constant battle of trying to help my son, I came across a news clip about a family on the west coast that started treating their son’s extreme behaviors with cannabis. I saw that young boy’s badly bruised and bloodied face peering out from under the bright red protective padding of his wrestling headgear and I watched his parents speak about his self-inflicted harm. They shared how an “oil” of some sort was greatly reducing these behaviors. I had never felt more perplexed in my life as I watched the story over and over.
Holy cow - they’re giving that little kid WEED?! What kind of par-… wait… he stopped punching himself? He’s sitting calmly and smiling? Come on now, Is this really a thing? Seriously?
Right around this time, we were looking to relocate again. Missouri clearly turned out to be a bad situation for us and we needed to go someplace that offered Nate more than just a lifetime of monster doses of antipsychotics and benzodiazepines. We knew that going home to Wisconsin wasn’t going to make anything better. California came up as an option and I saw that they had medical cannabis.
This is it. We have to try it. If this doesn’t work, we will have to find alternative placement as soon as possible. He’s not safe. We’re not safe. We cannot keep doing this the way we are. It’s just not working. At that point, we have nothing left to lose…except for my son.
The move to California
Nate on our way to California in March 2015.
After we got our California residency, schools, and services started, I quickly turned my focus back to what I felt was our Hail Mary. I searched the internet for cannabis doctors and found one nearby. While he was such a nice guy (and I consider him a dear friend to this day and instrumental in saving my son), he was barred from giving me anything beyond the written medical cannabis recommendation due to the federal law that threatens physicians’ medical licenses if they “prescribe” it.
Extremely confused, Nate and I walked out of his office and started heading to a dispensary that I had seen near my home, complete with a flickering neon Green Cross and blacked-out windows that were flanked by four burly security guards. My head was spinning and to say I felt overwhelmed is an understatement. Did I mention that I felt a little dirty walking in there?
But my dear indica. You had me at hello.
At the dispensary, I was given a 10mg THC edible and a vape pen. I was a bit hesitant about encouraging my son to inhale cannabis from a cartridge and battery that resembled an e-cigarette, but desperate times called for me to model it for him and hope he would follow my lead. Because of the shape and size of the vaporizer, the first thing I thought of was to compare it to drinking through a straw. I put a straw in a glass and said “drink!” while I took a sip. I then gave him the glass and straw and said “drink!” again. He complied. Next, I pulled out the vaporizer, held it up in front of him, said the word “drink!” and I inhaled from it. Then I held the vaporizer up to his mouth, once again said “drink!” and he immediately copied what I did. Within 10 minutes of giving my son his first dose, I could see a calmness I hadn’t seen in a long time.
On day three, we took a drive out to Joshua Tree National Park. I gave him a dose before we left the house and he spotted me taking pictures of the beautiful landscape. My son, who rarely smiled for a photo, plunked down and gave me the most beautiful grin I had ever seen without me even prompting any of it. It wasn’t the typical distant, vacant stare I normally got from him; it was a real smile. Genuine happiness. A “presence” I may have never seen in his almost 20 years. He cannot tell me how he feels, but I can see it. It is crystal clear that he is in a much better place.
Seven months after starting cannabis, Nate no longer needed any of his psychotropic pharmaceuticals (never attempt to reduce or remove medications on your own – you must be under the guidance of a medical professional and similar results are not guaranteed). He went from 18 pills a day to zero. ZERO! He’s safe. We’re safe. We were all living happily together under the same roof and enjoying life. He even started going to a day program again, where he enjoys spending time with his peers.
We have adjusted Nate’s cannabis intake up and down over the years. We have found many variables that have determined how much he would likely need. While Nate was weaning from all of the pharmaceuticals under a doctor’s guidance, he needed his cannabis intake increased over time to not only compensate for the medications, but to help mitigate withdrawal symptoms as well. His doses of THC were quite large for a period of time but have since greatly decreased.
Onward to advocacy
At a local community autism group early in our cannabis journey I met my future business partner and fellow autism mom, Rhonda Moeller. She’s got a young daughter on the spectrum and had also begun to look at cannabis to treat some of Maliyah’s symptoms before heading down the pharmaceutical path. We decided to form a support group on the same social media platform where we met.
Rhonda’s background as a biochemist became an invaluable asset to not only me, but to the handful of other families who voiced their cannabis curiosity. The handful grew to a few hundred, then a few thousand, and today we have nearly 14,000 members in our online community. As we grew, we read their pleas for help and we began looking for ways to offer as much educational assistance as we could.
In early 2018, we were granted a 501(c)(3) tax exemption and officially became the nonprofit organization WPA4A, Inc., more commonly known as Whole Plant Access for Autism. While we are not doctors, we are able to help educate families about medical cannabis. We collect information from every study we can find and explain the researchers’ findings to our members. We also collect a variety of anecdotal data from our own members and Rhonda creates beautiful graphs to help everyone see the different ways our families feel that it helps their children.
We also work with another nonprofit organization, MAMMA (Mothers Advocating Medical Marijuana for Autism), and connect our families to them when they want to help get autism added to the list of qualifying medical conditions in their states. Currently eleven states recognize autism as a qualifying condition, another handful where adding autism is currently being discussed, a few others with broadly-encompassing “debilitating” or “neurological” conditions, and finally, many that list common co-morbid conditions that may qualify many of the children of our members.
Based on the surveys we take in our support group, we have seen parents report that positive effects greatly outweigh negative responses. The following WPA4A graph shows our families’ self-reported results of three of the major cannabinoids: THC, CBD, and CBG.
WPA4A works to educate our families on everything from the most basic cannabis information (I’m looking at you again, indica) to more complex scientific information and studies, which helps our families become as informed as possible so they can navigate the cannabis maze as safely and confidently as they can, while they hopefully can shorten any trial-and-error period. While there is no magic bullet and no one-size-fits-all, there are countless cannabis options to try if one is so inclined. From better sleep to less aggression and lower pharmaceutical doses for some of our families, you can read some family testimonials here.
Based on reports to us, families seem to have the most success with tinctures, cannabis-infused oils, vaping, and plant matter capsules. Pre-made gummies and other edibles tend to be hit-or-miss because they generally do not include strain information, which could make a significant difference in success or failure. Topical creams and lotions do not appear to be very effective for symptoms like behavioral issues but could work well for skin conditions or localized pain.
Always consult a doctor before trying any new medical treatment. With cannabis becoming increasingly legalized and more widely accepted by the medical community, doctors are beginning to see more families asking about it as an option. While less pharmaceutical usage may be appealing to some, you must work with your doctor to see if that would be an option for your particular situation. Never attempt to start, change, or stop a medication without discussing it with a medical professional who is familiar with the patient. WPA4A does not provide medical guidance; we simply provide cannabis education, so our members have information to discuss with their doctors.
Depending on the laws of your state, you may need to seek specific cannabis doctors in order to become legal patients and/or cannabis caregivers for your loved ones. We can be reached at info@wpa4a.org if you would like help locating a cannabis doctor in your area. Even if you live in a “legal” state with recreational/adult use access, anyone under the age of 21 must be a part of the state’s medical cannabis program in order to use it legally. If you do not have a medical cannabis program in your state or if you are unsure of your laws, please reach out to our friends at MAMMA in order to find out more about that topic.
There is hope.
Jenni Mai is the President and co-founder of WPA4A, Inc. She lives in Southern California with her family and is a graduate student at Louisiana State University, Shreveport, pursuing her Master of Science in Nonprofit Administration. She can be reached at jennimai@wpa4a.org.
Dr. Orrin Devinsky
Editor’s note: You can learn more about the question of cannabis for autism in this video featuring Dr. Orrin Devinsky at the 2018 Autism Science Foundation Day of Learning in NYC.
Disclaimer: The information provided is intended for your general knowledge only and is not a substitute for professional medical advice or treatment for specific medical conditions. You should not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. NCSA has not yet taken any position with regard to medical cannabis.