Michelle Singh Gori still remembers watching Ryan convulse on the floor, eyes rolled back into his head, foaming at the mouth. She still remembers the severe seizures that would grip her nine-year-old autistic son.
“As a mom, I’ve never felt so helpless. All you can do is stand there are pray that it ends,” said Singh Gori, of Danville, California.
Ryan’s mother said she was desperate for a solution. But she was still shocked when Ryan’s doctor recommended a controversial treatment for her son: medical marijuana.
“Cannabis? What do you mean, Pot? I just thought the man was crazy. I mean I thought he had really lost it,” said Singh Gori. “I’ve never even been stoned. To me, it went against everything that I was raised to believe.”
But, despite her reservations, she said she got a prescription for medical marijuana and sought out a dispensary. Even though she perhaps doesn’t look like she would possess the know-how—she is petite with long blonde hair—she started distilling marijuana essential oil on the windowsill of her kitchen.
And she said ever since she gave Ryan that first dose, she has never looked back.
“From that first day, of all the therapies we’ve ever tried on him, this one was the most instant in how it helped him,” said Singh Gori.
Where once Ryan clung to a routine with the constant threat of meltdowns, Singh Gori said within hours he was focused, calm and seizure-free.
“There was a moment that evening, and every mom knows what I’m talking about, when I was reading Ryan a book and two of the pages stuck together and they ripped. I was just bracing myself for the meltdown,” said Singh Gori. “Typically he would be saying ‘Tape please, fix it please, we need to fix it please!’ But he very calmly smoothed his hand over the page, and continued reading. I was just amazed.”
For the past year Ryan has received a very small dose of marijuana every two days— two or three drops of marijuana essential oil in a capsule. But despite the small size, his mother said she sees miraculous results.
Dr. Lynne Mielke, who specializes in the treatment of autism in Northern California, said it makes medical sense that marijuana would help autistic children.
“This is an herb that has medicinal qualities,” said Mielke. “Medical marijuana, in some of these cases, will help a child to be calmer, less aggressive, easier to live with and can make a huge difference in the quality of life for some families.”
Dr. Mielke said there are many prescription drugs used to treat autism, such as anti-psychotics like Risperdol or Zyprexa, which can be very effective. However, they often have a price.
“There are many FDA approved drugs out there to help with autism, but many of them come with very severe side effects,” said Mielke.
Ryan’s seizures were a side effect of the drug Zoloft, prescribed to treat his crippling anxiety. But his mother said that since Ryan has started using marijuana, there is only one side effect she has noticed.
“After the first dose, he was in the backseat stuffing his mouth with popcorn and I said, “Hey Ryan, you got the munchies?” said Singh Gori. “I thought, okay, if it’s the only side effect, compared to seizures, I’m fine with that.”
Ryan may have “the munchies,” but his mother and stepfather insist they are not getting Ryan stoned.
Ryan’s stepfather, George Gori, has been a supervisor in law enforcement for 21 years—his broad-shouldered gait and matter-of-fact attitude give that away almost immediately. He said he sees people in his line of work who are under the influence of drugs “all of the time,” but that Ryan doesn’t fit into that category.
“There is no comparison,” said Gori. “When I look at him after he’s taken his medication, it’s just very calming for him. I look at his eyes, his countenance, his body language—he’s not under the influence at all. It’s just enough to keep him calm and to alleviate his anxiety.”
A Darker Side of Marijuana?
But groups like the Drug Free American Foundation, Inc. have said that the perception that marijuana is side effect-free is a dangerous one—and one that is far from the truth. The group also said the growing number of parents seeking marijuana for their autistic children is a serious cause for concern.
“There is a lot of propaganda out that glorifies the use of marijuana and portrays it as harmless and even helpful,” said Calvina Fay, Executive Director of the Drug Free America Foundation. “I would imagine that many of these parents simply do not know the facts about the issue and are simply desperate to find help for their children. Current research shows that there are significant detrimental consequences that result from chronic use of marijuana, especially by children.”
Although there has been little to no research done on the specific effect of marijuana on autistic children, other research on marijuana use on children has been mixed. The research Fay refers to includes studies indicating that marijuana use can affect memory, attention and general executive functioning in children. Other research shows that marijuana may make individuals twice as likely to experience a psychotic episode, including schizophrenia, hallucinations, or delusions.
The Autism Research Institute (ARI), an organization widely considered to be at the forefront of autism research, has released information on using medical marijuana to treat autism. ARI shared one letter from a parent of a violent autistic son who started using marijuana baked into brownies to help calm his aggression. The letter reads:
“At times, I had to lock myself in the bathroom; otherwise he would attack me. We gave him many medications, but nothing worked. Soon after he ate the brownie, my son’s anxiety disappeared, and his sweet loving behavior returned. He shows no signs of being under the influence of a drug…This has clearly saved my child’s life and my family’s life.”
Dr. Bernard Rimland, founder of the Autism Society of America and the former Director of the ARI, wrote this after the letter: “While I am not ‘pro-drug,’ I am very much ‘pro-safe and effective treatment,’ especially in cases where an autistic individual’s behaviors are dangerous or destructive. Early evidence suggests that in such cases, medical marijuana may be a beneficial treatment, as well as being less harmful than the drugs that doctors routinely prescribe.”
However, Fay and others believe that anecdotal evidence like this letter is simply not enough to justify using cannabis.
“Why create more challenges for autistic children? Those affected with autism deserve the best medicines available, not a harmful toxic weed,” said Fay. “Until sufficient examination has clarified safety and developmental issues associated with marijuana, using crude marijuana for treatment of autistic children should be avoided.”
One Mother Takes the Cause Into Her Own Hands
Frustrated by this lack of research in the area of marijuana and autism, one Orange County mother started a campaign and a foundation to help raise awareness and funds.
Mieko Hester Perez said the issue of cannabis in the treatment of autism lies close to her heart—she said she almost lost her twelve-year-old autistic son Joey, before she discovered medical marijuana two years ago.
“He was on a combination of thirteen different prescription drugs, and his weight dropped down to 46 pounds. He was diagnosed with anorexia and malnutrition, second to his autism,” said Perez. “Ultimately, his doctors gave him six months to live. I was devastated. And I was determined I would figure out a way to extend his life.”
She maintains, unequivocally, that discovering marijuana and introducing it to her son has saved his life.
“The immediate change I saw was eye contact. He gained over 40 pounds, he’s happier and better behaved,” she said.
The next step for Perez was to found the Unconventional Foundation for Autism to provide support to families and to help raise money for research into alternative therapies for autism, like medical marijuana. So far, the foundation has worked with University of California, Irvine to offer a medical marijuana symposium on how autism and related symptoms can be treated with medical cannabis, especially in the cases of children.
But Perez’s long journey with Joey and his autism has taken a sudden turn, and now, cannabis is playing a larger role in his life than ever before.
Six months ago, Joey was diagnosed with a terminal illness in addition to his autism: Duchenne Muscular Dystrophy. It’s a disease of rapidly progressing muscle weakness—by the age of 12 most children are confined to wheelchairs, and very few live past the age of 16.
Perez said she is still dealing with perhaps only having months left with her little boy. The day before our interview she spent 13 hours at the hospital with him.
“Yesterday, Joey lost the ability to feed himself,” said Perez, through tears, “so we know it’s already in the middle of his chest. It’s been hard. But I have to keep a smile on my face.”
A smile may be on her face, but research is on her mind. Perez found that some studies suggest marijuana may have a protective effect on muscles. She said it is an effect she is counting on.
“At the end of the day, the cannabis is keeping him alive,” said Perez. “Cannabis has helped extend my sons life and at the same time it’s given my son the best quality of life.”
And after Joey is gone, she said the foundation will continue his legacy.
“Before cannabis, the dark place that I was in with Joey was a horrible place. I wouldn’t want any other family to go through that,” said Perez. “Cannabis has forever changed my life. And I know that Joey has changed the way people look at cannabis when treating autism.”
Perez has probably been the most vocal parent in the recent media-storm of interest surrounding medical marijuana and autism—she has appeared on multiple Southern California stations and on Good Morning America defending cannabis as a valid treatment. She said she doesn’t know exactly how many other parents like her are out there, but the numbers are large and growing.
“After I was on Good Morning America, I received over 700 emails from parents asking questions,” said Perez. “I really think there’s a mother like me and a child like Joey in every city and every state in this country. There are definitely other parents using it, I’m just the only parent that has gone public.”
The Internet: Most Parents’ Protocol
“Going public” with information about treatment of autism with marijuana is not something that most doctors seem keen on doing. As a result, there is no publicized set protocol for treating autism with cannabis, and it is precisely this lack of set protocol that some critics find most troubling. In fact, many parents learn how to dose their child with marijuana online, where other parents share tips and advice.
The Internet taught Singh-Gori how to distill marijuana essential oil in a jar in the sun. Another couple, who asked not to be named for fear of losing their jobs in the field of education, learned to grow their own marijuana plants in their backyard that they harvest for their 11-year-old. And other parents write online about baking marijuana into cookies—parents like Marie Myung-Ok Lee.
Myung-Ok Lee is a published author and teaches at Brown University. She blogged about giving her nine-year-old autistic son marijuana-laced baked goods after his biting became so violent, the teachers at his school began wearing protective padding.
“J’s little face, which is sometimes a mask of pain, has softened,” wrote Myung-Ok Lee. “He smiles more. For the last year, his individual education plan at his special-needs school was full of blanks, recording “no progress” because he spent his whole day an irritated, frustrated mess. Now, April’s report shows real progress, including “two community outings with the absence of aggressions.”
Stigma and Stress
Myung-Ok Lee’s blog posts were met with a small amount of praise, and a heaping dose of censure.
“No poor child deserves to be attacked by marijuana when it is SUPPOSED to be protected!” reads one comment. Others are more severe, accusing her of being a bad parent, of being a lazy mother.
This accusation of “irresponsible parenting” is an opinion echoed by the Drug Free America Foundation.
“The purpose of raising a child is to prepare them for the stress and added responsibilities of adulthood. Parents who resort to giving marijuana to their child risk great harm to their child as well as risk of raising a child addicted and ill prepared for adulthood,” said Fay. “This is particularly risky for autistic children since they already struggle with problems in socially relating to others, qualitative impairments in communicating and restrictive repetitive, stereotyped patterns of behavior.”
But some parents of autistic children, like Perez, do not take kindly to the criticism.
“[Fay] obviously doesn’t have a child diagnosed with autism, and she obviously doesn’t have a child who is dying,” said Perez. “Regardless of your title, not until you’ve walked in our shoes will your judgment matter—or else it really falls on deaf ears for me.”
Dr. Mielke said many who are unaffected by autism do not understand the stress of being a parent of an autistic child. She said that for the family, coping with autism can take its toll, and can often push parents to the edge.
“Raising an autistic child is much more difficult than raising a child with Down syndrome or mental retardation, for example, because of the serious nature of the behaviors that these children have,” said Mielke. “They are so difficult, that studies have shown these mothers have the same stress levels in their blood as combat war soldiers.”
Singh Gori remembers this stress well.
I used to ask God, ‘Why me? Why me?’” said Singh Gori, wiping away tears. “But I get it now. He’s an amazing little boy, he has taught me more about life than I can ever teach him”
She said she gives her son marijuana precisely because she is a good mother.
“I want him to be happy. I don’t want him in any pain, I want him to be fulfilled in life, and have the things he wants to achieve,” said Singh Gori.
She pulled out the photographs from her wedding to show me. One shows her in a long white dress with Ryan at her side, looking dapper with his hair combed back. She said medical marijuana enabled Ryan to be her ring bearer that day, and that he was very happy. He looks it—in the photos he is smiling, his mouth open in mid-laugh.
Her conservative upbringing may have taught her that, “pot is bad.” But now?
“I see it as a gift,” said Singh Gori. “I really do.”
By Natasha Zouves January 2012