Rob Gorski believes in science and and the power of modern medicine. Despite his research, Gorski still wrestled with the idea of medicating his then 6-year-old autistic son, Gavin. What it ultimately took, Gorski said, was a leap of faith.
For parents like Gorski, a resident of Canton, Ohio, the choice to medicate a child is a difficult one, and as the father of three boys with autism spectrum disorder, he should know.
The gap between parents who do medicate their children and parents who don't is growing wider, thanks to new research about the uncertain future of mediating autistic children published in Pediatrics, the official journal of the American Academy of Pediatrics.
The study found that a large percentage of children are being treated with psychotropic drugs or mood-altering drugs like stimulants or antidepressants.
According to the study that examined insurance records of 33,000 children on the autism spectrum from 2001 to 2009, 64 percent had been prescribed and filled a mood-altering, or psychotropic drug.
The concern behind prescribing drugs like this is a simple one: experts don't know what the drugs do. There is no evidence for the safety and effectiveness of these drugs, according to the study.
The retrospective research, released last month, also found 35 percent of the sample had been prescribed and filled two mood-altering drugs from different classes.
Psychotropic drugs are categorized into classes because of their widespread use in the mental health field. They are categorized into stimulants, antidepressants, antipsychotics, mood-stabilizers and anxiolytics.
The same study showed that 15 percent of autistic children in the sample had been prescribed and filled prescriptions from three classes.
Perhaps more concerning is that even less research exists about the effects of prescribing multiple psychotropic drugs, according to the study.
Treating the symptoms
Why then would doctors prescribe psychotropic drugs to children, some under age 6?
For starters, these medications are not as a treatment for autism.
Currently, no drug exists that will cure autism or treat the core symptoms. However, doctors will prescribe psychotropic drugs to help manage a child on the spectrum who suffers from inattention, depression, seizures or high energy levels, according to the Center for Disease Control and Prevention.
The only psychotropic drugs approved by the U.S. Food and Drug Administration are risperidone and aripiprazole, which are used to treat symptoms of irritability and agression, according to the study.
But the use of psychotropic drugs are far more common. Doctors may also perscribe other medications "off-label" to children as a "trial-and-error" type of approach to help remedy the child's symptoms.
"Since autism is not a disorder that responds to medication, the only time I would medicate a child with autism is if they had another treatable diagnosis that was significantly impacting their ability to function," said Kari Herrmann, clinical director of pediatric services at Utah State Hospital.
And for Gorski, medications — on or off label — could be the only hope for his son.
Gavin was originally diagnosed with Aspberger's syndrome in 2005. That diagnosis has since been changed to autism. But Gavin is special because in addition to his developmental setbacks, he has what Gorski calls a laundry list of other medical conditions.
"Without medication, (Gavin) couldn't exist," said Gorski, who has become a sought after expert on autism disorder. He writes about his experiences for Sharecare, a website for the Dr. Oz Show and has his own blog on dealing with autism.
Gavin, now 14, has been diagnosed with Schizoaffective Disorder, PICA, Epilepsy, Dysautonomia, Primary Immunodeficiency, ADHD and an undefined degenerative neurological disorder, to name a few, leaving him on nearly eight medications, two of which help to treat symptoms of his autism.
Elliot, another of Gorski's sons also on the autism spectrum, was recently prescribed medication for anxiety. For Elliot and Gavin the medication choice was made to improve the quality of life.
For the Gorski boys, their symptoms were outweighing their chance for a functioning life.
Trial and error
In America, one in 88 children is diagnosed with an Autism Spectrum Disorder. A 2012 sample study from the National Institute of Mental Health found that 56 percent of children on the spectrum are taking at least one psychotropic medicine.
According to the study, the most commonly combined classes of drugs were antidepressants and ADD medications, antipsychotics and ADD medications, antipsychotics and antidepressants, and a combination of all three.
Antidepressants like Prozac or Zoloft are used primarily to treat depression and anxiety, but can also be used to reduce repetitive behaviors in children on the spectrum. Research has yet to confirm the usefulness of these drugs, according to the National institute of Mental Health.
Stimulants, like Ritalin, treat ADD and ADHD disorders, however the minority of children on the spectrum respond to the drugs, and many show more side effects than children diagnosed with ADHD, according to the NIMH.
Antipsychotoics are primarily used to treat schizophrenia, and reduce aggression and other serious behavior problems, according to the NIMH.
"Psychotropic medications are not well studied in children," Herrmann said. "And combinations of medications are even less studied. There is little empiric evidence that they are helpful."
Gorski recalled a turning point with Gavin that ultimately influenced his decision to place his son on medication.
When Gavin was 6, he wasn't sleeping. According to Gorski, the "Lego Boss" would wake Gavin up every night and make him do "pretend shows." Gavin wouldn't sleep for days on end, haunted by the "Lego Boss" and monsters, one of which he called the "rat face."
Eventually, this progressed and Gavin started hearing voices and Gorski decided it was time to medicate.
Gorski and his wife began talking with Gavin's doctor about the medication route, double- and triple-checking different medications and potential side effects, he said.
"Before we agreed to anything we would ask our doctors, 'What would you do if he were your child? What medication would you choose?' This helped to calm our nerves," Gorski said.
And according to Herrmann, a lot of parents are like Gorski.
"Most parents are really reasonable. They love their kids, they want the best from them now and in the future, and would like to avoid using psychotropic medications, if at all possible," she said.
But she also wants parents and professionals to look at the facts.
Other treatments for autism spectrum disorders are effective because they include early intervention, but commonly are expensive, intense and can be hard to come by. This is a reason many children are medicated, and often times, with multiple drugs, according to the study.
"(Doctors) have to be very careful and use great judgement when trying to balance the need for a reduction in very disabling symptoms and the desire to provide relief with the little evidence that multiple medications for autism is going to help them," Herrmann said.
Lessons in parenting
Finding a medication for children like Gavin can be just as challenging as the decision to medicate itself. He is taking lithium and clozapine, the latter being one of the most highly controlled medications in the country, Gorski said.
The two-year process of getting Gavin prescribed clozapine, most commonly used in the treat schizophrenia and off-label treatment of bi-polar disorder, required blood work from Gavin every seven days.
"It was a tough choice," Gorski said. "It was banned in other countries. In Gavin's case, it was the only anti-psychotic medicine he hadn't been on."
While research on the drug indicated instances of death as a side effect, Gorski and his wife made the difficult decision to try it with Gavin.
"It's done wonders for him," he said. "He's been going on it for two years and the results have been largely positive."
But the decision never comes without heavy criticism, Gorski said.
"As much as you hate that you have to (medicate your child), you have to do it. And you have to stand behind it," Gorski said.
And even Gorski said he had his doubts.
"My gut instinct is that we are taking the easy way out. Like we are not doing enough as parents to helm them through this without the medicine, but you have to get over that," Gorski said.
Because in the end, one of the hardest lessons this father has learned is doing what's best for his child.
"If it's medications, that's what we do. If the situation changes, we can remove them. We are always reevaluating, going to follow ups and making necessary changes."
Quality of life
Since starting the clozapine, Gavin has had what Gorski said is every conceivable test to determine how he is reacting to the medication. While Gavin still struggles with other health issues, none of his current symptoms are because of the medications he is taking.
Herrmann said it is very difficult to know what medication is doing what especially when taking as many as Gavin, but Gorski he said trusts his doctors and the vast amount of research he and his wife have done.
"Because when it comes down to it, you have to do what's best for the kids," Gorski said.
And Gavin's quality of life has drastically improved since being on medication, his father said.
"Medication is most appropriate when it helps a child function at home and at school and with friends and family," Herrmann said. "It should not be used out of convenience but to reduce symptoms of specific disorders so the child can have the fullest life possible."