A guest post by science journalist Kaitlin Bell Barnett
If you’ve followed much of the media coverage and commentary about ADHD medications in recent years, you might well assume that kids – some of them allegedly not even meeting the criteria for ADHD – were being drugged by parents, doctors and schools eager for a “quick fix” for disruptive behaviors and sub-par academic performance.
Since prescription of ADHD medications began to take off in the late 1980s, critics have been quick to point to the many potential harms – physical, psychological, developmental – that medications may cause kids.
Shockingly absent from the debate is any discussion of how the kids themselves feel about their meds. Academic research on the subject is sparse, and often not limited to ADHD medications in particular.
Other accounts rely on retrospective reports from young adults, like those in last year’s Remembering Ritalin, a book by pediatrician and ADHD pundit Lawrence Diller, in which he interviewed his former patients about their experiences with medication.
So a report out this week on how kids with ADHD feel about their diagnoses and their treatment is a long-overdue addition to this overheated debate. Conducted by bioethicist Ilina Singh, of King’s College London, the so-called VOICES report provides valuable qualitative data collected from in-depth interviews with children ages 9 to 14.
The report is notable not just because of its findings, but because of its premise – that children “are not passive victims of their behaviors, or of ADHD diagnosis and stimulant drug treatments.” Rather, Singh contends, children’s opinions and perceptions are important and valuable, even if they’re limited by kids’ developmental stage and their ADHD symptoms.
As Emily Willingham over at Forbes points out, the report isn’t peer-reviewed; it does, though, seem to have been carefully conducted, interviewing both parents and children and gathering detailed socioeconomic and demographic data to put the findings in context.
Singh and her assistants interviewed 151 children in the U.S. and U.K. Some had been diagnosed with ADHD and were taking stimulants, others had been diagnosed but not medicated, and a third group had no ADHD diagnosis or medication treatment.
What they found in talking to the kids who had taken medication is strikingly at odds with common concerns about how the drugs impact kids.
Stimulants and Identity
Responding to widespread ethical concerns about how medications that change thoughts and behavior might negatively affect children’s developing sense of self, the project’s interviewers asked children whether they the stimulant made them into “a different person.” Most kids in the study said they thought the medications changed their behavior – but not their personalities. A 13-year-old boy from the United States, for example, told his interviewer that “[On and off the medication] they’re both me.”
Most kids didn’t say that medication fundamentally altered their identity, even when their parents made statements to interviewers such as, “he’s a different person on medication.” The report’s authors took this divide as evidence that children have “a resilient sense of self” and, at a certain age, anyway, are more influenced by their peers than their parents.
One small group of kids did think the medication made them into someone different – those who experienced severe side effects from the drugs.
To my mind, this isn’t a reason to categorically oppose stimulant use in kids. But it is a reason for parents and doctors to have frequent, in-depth discussions with children about their medication and its side effects. Adults should to try to understand what the side effects mean to the young people who are actually experiencing them – and to take seriously the possibility that side effects can threaten or undermine children’s sense of their own identities.
Kids’ Moral Agency Over Their Thoughts, Decisions and Behavior
An oft-cited concern about medications that control impulsive behavior is that they deprive kids of the chance to learn how to make moral decisions.
But the VOICES report found that most kids in the study reported that they still experienced internal moral conflicts while taking medication. They appreciated that medication allowed them to “stop and think” before acting. Rather than behaving impulsively, they could make a reasoned decision.
One 10-year-old American boy described ADHD as acting “like a blocker” to prohibit him from making certain decisions. Medication, he said, “opens the blockers so that you can go [the right] way. But you still have the choice of going the wrong way.” He added, “It’s not like [on medication] you’re a robot.”
Notably, the report found that these “stop and think” decisions in children whose ADHD manifested mostly as behavior problems often involved fighting back in response to bullying or aggression – especially when the child’s friend or family member had been insulted. Parents and doctors, the report notes, might take this as evidence that medication isn’t working. But in fact it’s doing what it should: giving kids time and space to consider their actions and likely repercussions.
Adults may not approve of such behavior. But the answer isn’t a new medication, the report suggests. It’s an intervention that addresses the aggressive, bullying environment and helps the teach the child why they should make different choices.
Where medication treatment is failing
Both parents and doctors often worry about the stigma associated with ADHD. The VOICES report found this concern was most prevalent in families that treated ADHD primarily as a disorder of academic performance, as opposed to a behavior problem.
These families, who were more likely to come from the United States than from the UK, often told kids to keep their diagnoses secret, in an attempt to protect them from stigma. Sometimes, the adults said they feared being stigmatized themselves for giving their kids medication.
But many of these secret-keeping families gave the children medications without effectively communicating to the children why they were taking the drugs in the first place. This resulted in some very confused kids.
“ADHD is kind of like a cancer disease but you’re not going to die from it,” an 11-year-old girl from the United States who was taking medication reported. “I don’t know what it [ADHD] stands for, but I know if means lying and being nosy,” a 10-year-old American boy told interviewers. A third child, 11 years old and also from the U.S, had never heard of the condition, despite taking medication for it.
Parents weren’t the only ones failing to talk to kids about their medication. Children in the VOICES study reporting having few meaningful interactions with their doctors. Follow-up visits mostly focused on ticking off lists of side effects, rather than discussing ADHD or how the medications were or were not working.
Giving kids stimulants without explaining the need for the drugs strikes me as a recipe for a conflicted, contentious and unproductive experience with medication. Drugs don’t work in a vacuum. As the placebo effect demonstrates, attitudes and expectations about medications’ effects matter a great deal, especially when it comes to drugs that work on thoughts, emotions and behaviors.
In my recent book, Dosed: The Medication Generation Grows Up, about young adults who began taking psychotropic medications as children and teens, I found that those who received feedback, guidance and support about their meds from parents, doctors and even siblings and peers had overall more positive experiences with medication. A body of social science research by social workers and anthropologists has come to similar conclusions.
Indeed, one of the chief concerns kids in the VOICES report raised was whether they would be able to stop taking their medication one day. This didn’t mean they necessarily resented the drugs, the report argues – just that they hoped someday to be able to control their behavior themselves.
That’s a reasonable – and a noble – aspiration. And I wholeheartedly agree with the authors of the report that parents, doctors and other caregivers should work with ADHD children to help them develop the behavioral, time-management and decision-making skills that can help bolster them, on medications or off them.
The VOICES study demonstrates that kids find stimulant medications very helpful for controlling many symptoms of ADHD. But it also shows that viewing stimulants as a “quick fix” is misguided, ignoring both the reality, as well as the richness and complexity, of children’s actual experiences with medication.
Kaitlin Bell Barnett is a science journalist and blogger based in Brooklyn. Her first book, Dosed: The Medication Generation Grows Up, came out in April from Beacon Press. It examines the experiences of young adults who came of age taking psychiatric meds. She also blogs on the subject at PsychCentral. Her work has appeared in Salon, The New York Observer, Parents, The Huffington Post, Gastronomica, Prevention, The Boston Globe, among other publications.