Nov. 23, 2009— -- Given the many challenges involved in raising an autistic child, parents are willing to try a variety of potential remedies, many of which are controversial and unproven.
But one potential treatment that has gained attention recently is one that was controversial well before its first mention in connection with autism.
"At first I did some research, and I found a doctor who actually had a protocol for medical marijuana in children diagnosed with autism," Mieko Hester-Perez of Fountain Valley, Calif., told "Good Morning America."
Hester-Perez made her decision to try giving her 10-year-old son, Joey Perez, medical marijuana after his weight had become dangerously low due to his unwillingness to eat. She said that at the time she began the approach, he weighed only 46 pounds.
"You could see the bones in his chest. He was going to die," she said.
"The marijuana balanced my son," said Hester-Perez, noting that she has never used marijuana herself. "My son had self-injurious behaviors. He was extremely aggressive, he would run out of our house... he was a danger to himself and others."
But just hours after she gave him one of the pot-infused brownies, she said she could see a change -- both in his appetite and demeanor.
"Within hours, he requested foods we had never seen him eat before," said Hester-Perez.
She added that her son used to take a cocktail of medications, three times every day, for his condition. He now takes only three, and he has a marijuana brownie once every two or three days. He still cannot communicate verbally.
"I saved my son's life, and marijuana saved my son's life... When a mother hears that her son is knocking on death's door, you will do anything to save his life," said Hester-Perez.
Allen St. Pierre, executive director for the National Organization for the Reform of Marijuana Laws, said that marijuana for children is something that draws concern even from parents within his advocacy organization.
"While there have been some people within NORML's ranks who remain put off by this, I think speaks to just how fearful some are [of marijuana]," he said.
And this reaction remains out of proportion to the possible risks from the drug, he said, noting that, just as some children are given doses of medical marijuana in more regulated settings, children can be given controlled doses of strong drugs such as amphetamines or opioids without drawing as much opposition.
"They probably wouldn't raise an eyebrow," St. Pierre said of parents' responses, "but because reefer madness has been so profound in the United States, that's one of the only things that makes it notable."
But some opposition to this type of treatment is medical concern.
"He is intoxicated. He's stoned," said Dr. Sharon Hirsch, a child psychiatrist at the University of Chicago. "It means that he's under the influence of a drug and may have an addiction. It can cause psychosis, may lead to schizophrenia. [There's] no evidence at all at this time and no reason to prescribe any kind of marijuana for a child with autism."
Pot and Consequences
Because of a lack of research on marijuana and autism, the effect of actions like Hester-Perez's are unclear.
"The data on early exposure and long-term exposure in kids, at least one study suggests small decreases in IQ long term," said Mitch Earleywine, a psychologist and associate professor at the University at Albany who has researched marijuana and currently serves on the advisory board for NORML.
"My only concerns are based on those data of deviant brain development or loss of IQ points, but again, we're talking about someone who is autistic, so I'm not sure how nuts to go about that," he said.
Noting that he only infrequently hears about parents using it for their children's autism, Earleywine said, "My friends who are big in autism treatment, this is not reaching them at all. The news doesn't reach them and they think little of this approach," he said, explaining that many doctors who work with autistic children prefer to use behavioral therapy instead of pharmaceutical intervention.
"I prefer to see people really go with the behavioral treatments as the first line," he said. However, he understands why a parent might choose to give a child marijuana to treat autism symptoms.
"The day to day life with an autistic kid is really difficult to understand," he said. "Having some kind of intervention like this can mean the different between someone's going inpatient or not."
Referring to a Rhode Island mother who wrote about her experience with pot in the online magazine Double X, Earleywine said, "I hope other folks don't give her too much trouble until they've walked a mile in her shoes."
When There's No Smoke
By giving the marijuana to the child in food, parents may avoid some of the negative side effects of smoking, said Earleywine. And while marijuana may be available in pill form, he explained that that is probably not an appealing option.
For one thing, he explained, the pharmaceutical forms of THC -- an active component of marijuana -- available may not have all the benefits that marijuana itself does, and the pills can be expensive as a treatment, since they can range, Earleywine said, from $4 to $11 each, with a child needing three per day.
Meanwhile, he said, it seems a child's dose from growing the drug in-home was probably around $1 per day.
While some parents who have used marijuana for autism may swear by it, it remains rare and unstudied, at least on any significant scale.
"I'm not aware of any research on the efficacy of marijuana on the treatment of autism," said Stephen M. Edelson, director of the Autism Research Institute, which collects information from parents on alternative treatments they try. "That doesn't mean it doesn't work, it just means there's not scientific documentation that it does work."
"We still hear reports from parents who have tried it. I cannot say that everyone who tries it sees a change," he said.
"As far as research, no there isn't and I would think there should be," said Edelson. "That could be one of the few options to treat children who have these very severe behaviors."
But while parents have tried a variety of treatments for autism, the common thread may be the calming effects these treatments have, rather than anything about the treatment itself.
"If medical marijuana calms down some children with autism it may work in the same way that massage or swinging therapies do. These things feel good and that could have a settling effect on kids that are prone to be hyperactive," said Becky Estepp, mother of a child with autism and a spokeswoman for autism advocacy group Talk About Curing Autism.
Marijuana Research In America
St. Pierre said one of the primary problems with marijuana research has been that government funding policies have not allowed research into possible medical benefits, only potential harms. His statement appears supported by a search of the database of clinical trials funded by the government, showing trials of
"One of the big concerns we've had for over 30 years is that the federal government has a series of skewed funding priorities," he said. "If the government allowed researchers to move more naturally…we would see more studies on cannabis and autism."
"[The National Institute on Drug Abuse] would not fund a trial of marijuana as a treatment of autism," said Earleywine.
And he said that is unlikely to change even under a more liberal administration.
"It's a competitive time to get those research dollars," said Earleywine. "I think it's unlikely, even thought the attitudes are less conservative."
Email Mieko at email@example.com or email Ted Cromwell, the head of the Unconventional Foundation for Autism, at firstname.lastname@example.org.
For more information on autism, visit the American Academy of Pediatrics at www.aap.org.