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Hannah Furfaro was a writer at Spectrum News from 2017 to 2019. She previously worked at The Wall Street Journal, The Fresno Bee, and the Associated Press; her work has also appeared in The Guardian and Audubon Magazine.

This story originally featured on Spectrum News.

Even as a toddler, Jaymes Lesovoy was violent. He hit and bit his parents, and he tore apart his and his sisters’ toys. At 18 months of age, he was diagnosed with autism.

Jaymes’ pediatrician suggested behavioral and speech therapy, but neither approach reined in the boy’s aggression. In 2006, when Jaymes was 2, the doctor prescribed risperidone—an antipsychotic medication that had been approved earlier that year to treat irritability in autistic children aged 5 and older. A few years later, he added a second medication to the mix—the seizure drug valproic acid—although Jaymes does not have seizures.

Still, Jaymes acted out at home and at school, and continued to do so for years. When he was 10, another doctor suggested Jaymes try a different antipsychotic: aripiprazole. That drug had been approved in 2009 to treat irritability in autistic children aged 6 and older.

Jaymes’ mother, Amber Lesovoy, was familiar with aripiprazole. She had taken the medication herself a year earlier for her own autism and bipolar disorder, and she had experienced an unusual side effect: trouble urinating, which disappeared after she stopped taking the drug. She worried Jaymes might also experience side effects but felt she had few choices left. “I was a teen mom,” she says. “I didn’t have a lot of life experience, so all I knew to do was what the professionals told me.”

Jaymes was underweight when he started taking aripiprazole, but within a few weeks, he was always hungry: “He would sneak food; he would eat huge amounts at mealtimes. Any change he got to get food, he would take it,” Lesovoy says. The pounds started to pile on.

There were other, more disturbing changes. When he started with aripiprazole, his mother says, he began to flail his arms, kick his legs and scrunch up his face without warning—severe involuntary muscle spasms called tardive dyskinesia. (Jaymes was later diagnosed with Tourette syndrome, which his doctors say explains the leg-kicking.) After a year on the drug, Jaymes had gained 50 pounds. He had fewer angry outbursts, but Lesovoy decided the side effects were not worth it. Of all the drugs Jaymes had been prescribed, aripiprazole was “one of the worst,” she says.

It has been 11 years since the U.S. Food and Drug Administration (FDA) approved aripiprazole for children with autism. The drug, marketed as Abilify, initially had a reputation of having fewer side effects than risperidone, its only competitor in this population. But a decade’s worth of data suggest that is untrue. As with many antipsychotic medications, long-term use of aripiprazole can lead to tardive dyskinesia, as it did for Jaymes. It might also be linked to heart problems in autistic children. And perhaps most concerning, aripiprazole appears to cause just as much weight gain as risperidone, compounding a problem many children with autism already have.

“The weight gain is not subtle,” says Eric London, director of autism treatment research at the New York State Institute for Basic Research in Developmental Disabilities. He says he has discontinued the drug’s use in 15 to 20 percent of the autistic people he treats, one or two of whom have gained more than 100 pounds.

A string of lawsuits over the past several years have charged that aripiprazole’s developers, the pharmaceutical companies Otsuka Pharmaceutical and Bristol-Myers Squibb, did not adequately warn users of the drug’s potential side effects—including compulsive behaviors such as gambling, sex addiction, and excessive shopping. Other lawsuits alleged that the companies marketed the drug illegally for conditions it may not help. Most doctors interviewed for this story were aware of the risks. One described aripiprazole as a “last resort” in his treatment arsenal—a drug intended only for children who harm themselves or others. Still, a few say they consider aripiprazole a cure-all that can ease minor behavioral problems such as general agitation. Many clinicians say they prescribe the drug for a year or longer. Unlike risperidone, though, aripiprazole has not been shown to work long term in children with autism. Neither Otsuka nor Bristol-Myers Squibb responded to repeated requests from Spectrum for comment.

From 2014 to 2016, more than 500,000 children were prescribed aripiprazole in the US. And among children with autism, the number taking antipsychotic medications overall is about one in six, according to one 2016 study. “That is concerning and suggests possible over-prescription or overuse,” says Matthew Siegel, director of the Developmental Disorders Inpatient Research Collaborative at Spring Harbor Hospital in Westbrook, Maine. “Those are our most powerful, potentially most problematic drugs. Should that really be the most common [type of] drug we use?

Adverse events related to aripiprazole use
The most common adverse events reported in autistic children who took aripiprazole, according to data collected by the U.S. Food and Drug Administration. The agency does not verify these reports, and many other adverse events may go unreported.
Self-injurySleep problemsAtypical behaviorMood problemsAnxietyBehavior problemsMental impairmentDystoniasTremorHeadacheNeurologicalproblemsChanges inconsciousnessMovementconditionsMuscle-relatedproblemsMusculoskeletalconditionsAtypical muscle toneOther hyperglycemicconditionsDiabetesAppetite conditionsWeight gainFatigueGastrointestinalproblemsNausea andvomitingPsychiatricPsychiatricNeurologicalNeurologicalMusculoskeletalMusculoskeletalMetabolicMetabolicGeneralGeneralGastrointestinalGastrointestinal