Just six months ago her son, Joey, a 10-year-old with severe autism, weighed just 46 pounds. He stopped eating after the medications he had been taking to control his behavior took away his appetite, according to the Orange County, Calif., mom.
“You could see the bones in his chest and in his arms and legs,” Hester-Perez says. “He had stopped walking and he would bruise very easily.”
But it was medical marijuana, an unorthodox treatment for autism that’s been the center of debate recently, which got her child eating again and changed his life for the better, she says. It was not a decision she made lightly. “I decided to try medical marijuana truly after I exhausted every other treatment,” Hester-Perez says.
About five years ago Joey began exhibiting behaviors typical of children with severe autism—he would hit himself, bang on walls, and throw anything he could get his hands on. “He was very unpredictable,” she says, so much so that she shied away from inviting company over or taking Joey to someone else’s house. “I could no longer socialize with friends or family due to his behavior.”
Hester-Perez tried behavior modification, a gluten-free, casein-free diet, and over 13 different medications with limited success, she says. While some of the medicines managed to reduce Joey’s outbursts, the results were fleeting, according to the mother. “The effects of the medication were temporary. It seems like every three weeks we were either changing the doses or changing the medication, which is normal, but that took a toll on his body,” she says.
All of the medicines—including Ritalin, Focalin and Risperdal—had serious physical side effects on Joey. Thee were facial ticks, seizures and liver damage, but worst of all, a lack of appetite that left Joey emaciated and weak, his mother says.
As grim as the situation was, it was a light-hearted moment with friends that clued Hester-Perez in on the possible benefits of marijuana. “I was sitting around with friends and it started as a joke,” she says. “We were talking about how marijuana users eat, they sit down, they’re very calm, and they’re pleasant to be around.”
Later that night she typed “autism and medical marijuana” into an internet search engine and the name Dr. Bernard Rimland popped up. Rimland is a former director of the Autism Research Institute who wrote about using medical marijuana to treat autism.
“I’m not pro-drug, but I am very much pro-safe and effective treatment, especially in cases when an autistic individual’s behaviors are devastating and do not respond to other interventions,” Rimland once wrote. “Early evidence suggests that medical marijuana may be an effective treatment for autism, as well as being safer than the drugs that doctors routinely prescribe.”
According to the Autism Research Institute, some of the symptoms marijuana has improved in children with autism include anxiety, aggression, panic disorder, tantrums and self-injurious behavior. Though Rimland died in 2006, his ideas continue to draw interest from parents with children on the spectrum.
California is one of 14 states that now allow the use of medical marijuana with a doctor’s prescription. After consulting with Joey’s pediatrician, Hester-Perez began administering it to her child by baking it into brownies.
The mother says she noticed an improvement immediately. “Joey was mellow,” she says. “He wanted to sit in his room and play with his toys. Autistic kids don’t want to play with toys. We noticed that he wasn’t on edge as much.”
For the past seven months Joey has been taking one marijuana brownie—about the size of a 50-cent piece—every two to three days. “The other meds I was giving to Joey he would take three times a day and they were not having the same effect as the medical marijuana,” Hester-Perez says.
The improvements continue to be evident, she says, as Joey is now smiling and even attempting to talk—things he never did before. Having appeared on Good Morning America and other media outlets, Hester-Perez is spreading the word about medical marijuana and autism. She has even started her own website, uf4a.org. “There are definitely other parents who are using it but I’m just the only parent that’s gone public,” she says.
And though she lives in a conservative county in California, the response to her grassroots campaign has been overwhelmingly positive, she says. “The positive feedback has far outweighed the negative feedback,” she says. “After I was on Good Morning America, I received over 700 e-mails from parents asking all kinds of questions. I heard from a mother in Texas who had a child with autism die of malnutrition and she said she would have moved to California if she’d known about medical marijuana.”
The mother is hoping her crusade will result in the California state legislature including autism as one of the treatable conditions under its medical marijuana law, which passed in 1996. AIDS, cancer, glaucoma, and arthritis are among the illnesses currently included. Although autism is not explicitly mentioned in the bill, doctors can prescribe marijuana for any other illness that it might provide relief.
“The medical community must start acknowledging the benefits of cannabis for our children with these symptoms. Finding a medical marijuana doctor to see a child is difficult – they fear the risk of losing their license,” Hester-Perez says. “I called several doctors before I found a doctor for Joey that I thought was morally in line with why we were turning to cannabis. For those who have exhausted all other treatments medical marijuana provides one more option that does not lead to death, liver damage and seizures.”
Hester-Perez isn’t the only parent who has admitted to giving her child medical marijuana. Marie Myung-Ok Lee, an author and professor at Brown University, has a 9-year-old child with autism who is taking marijuana to treat his behavior. Though the mother declined an interview with Spectrum, she has blogged about the experience online.
In the last year the teachers at her child’s school began inquiring about his behavior, even having to wear protective pads because his biting had become so severe, Lee writes. She didn’t like the idea of putting her child on Risperdal, as its long term effects have never been studied in children, and became intrigued when a homeopath suggested medicinal marijuana.
“But I was resistant. My late father was an anesthesiologist, and compared with the precise drugs he worked with, I know he would think marijuana to be ridiculously imprecise and unscientific,” she writes. “At his school, I was already the weirdo mom who packed lunches with organic kale and kimchi and wouldn’t let him eat any ‘fun’ foods with artificial dyes. Now, I’d be the mom who shunned the standard operating procedure and gave her kid pot instead.”
Lee’s doctor put her child on the prescription drug Marinol, a synthetic form of cannabis, and her son showed a marked improvement in behavior, she writes. After he developed a tolerance to the synthetic drug, however, his aggressive behavior returned.
Since her state, Rhode Island, allows medicinal marijuana, Lee filed the paperwork and her doctor consented, making her son the youngest person in the state to be prescribed pot. She says she’s seen a steady improvement in his behavior.
The Carpinteria, Calif., mom says her son Kevin’s behavior spiraled out of control when he reached puberty. “He had really withdrawn into himself and at that time he was almost non-verbal, even though he had been very verbal,” she says.
Hosseini put her child on traditional medication to reduce his outbursts, but like other parents, she was concerned about the long-term effects they might have. Since starting her son on medical marijuana Hosseini has noticed positive changes.
“Kevin calms down within five minutes of receiving it,” Hosseini said. “He is more responsive and verbal, asking more thoughtful questions. He sleeps through the night and doesn’t wake up. He has a good appetite. He is less resistant and more manageable and cooperative.”
On the downside, the mother says the child is sleepier in the day and requires a nap. She’s also noticed he’s become more self-centered. “At a Mexican restaurant (recently), he yelled to the waitress twice to bring him chips,” she says. “I mean yelled. Everyone was looking at us.”
Hosseini says she plans to continue giving Kevin medical marijuana, while closely monitoring his progress.
Though Kansas does not allow the use of medical marijuana, D’Ette Spurgeon, a mother from Topeka, swears her son’s recreational use of the drug helped him focus and develop empathy and social skills.
Spurgeon’s son, Louis, now 20, was diagnosed with pervasive developmental disorder not otherwise specified when he was 13. He had significant cognitive delays and limited social skills, his mother says. “He was very impulsive and had no understanding of consequences,” Spurgeon says. “He never seemed to understand emotions or facial expression. He would answer questions but couldn’t just sit down and share ideas of his own or carry on detailed conversations. At 16, his reading level was about third grade and his writing ability was about first or second grade.”
After entering high school, Louis fell in with the wrong crowd, his mother says, and began smoking marijuana. Though Spurgeon protested his use at first, she noticed a marked improvement in his behavior while on the drug.
“He was sitting in my living room and he had been smoking and he was watching a documentary on the History Channel on UFOs,” she says. “I watched it with him. After the show was over I sat down with him and we talked about it. It was the first real conversation I ever had with my son. Tears came down my (face). I cried. I had never had a conversation like that with him in my life.”
Louis no longer takes the medication he has been on since his childhood to control his behavior. Instead he smokes marijuana once a day. “He has since explained that it slows his mind down without all the side effects of the medicine he was prescribed that never did anything but sedate him,” Spurgeon says. “He can now sit still through a movie and understand the story without having to watch it several times. His vocabulary has grown. He still has some tics but not to the degree he had when he was younger. He can handle being touched and will even offer hugs to people he cares for.”
Some 150,000 patients have received medical marijuana through Medicann, an Oakland clinic, since Dr. Jean Talleyrand founded it in 2004, including four with autism. “All four patients have had very good results,” Talleyrand says. “Because I only have four patients, I’m not quite sure what combination of ingredients are affecting the children.”
Article by: Nick Buglione