When children are diagnosed with attention deficit hyperactivity disorder, stimulant medications like Ritalin or Adderall are usually the first line of treatment.
The American Academy of Pediatrics issued new guidelines on Monday that uphold the central role of medication, accompanied by behavioral therapy, in ADHD treatment.
However, some parents, doctors and researchers who study kids with ADHD say they are disappointed that the new guidelines don’t recommend behavioral treatment first for more children, as some recent research has suggested might lead to better outcomes.
When 6-year-old Brody Knapp of Kansas City, Mo., was diagnosed with ADHD last year, his father, Brett, was skeptical. Brett didn’t want his son taking pills.
“You hear of losing your child’s personality, and they become a shell of themselves, and they’re not that sparkling little kid that you love,” Brett says. “I didn’t want to lose that with Brody, because he’s an amazing kid.”
Brody’s mother, Ashley, had other ideas. She’s a school principal and has ADHD herself.
“I was all for stimulants at the very, very beginning,” Ashley says, “just because I know what they can do to help a neurological issue such as ADHD.”
More and more families have been facing the same dilemma. The prevalence of diagnosed ADHD has shot up in the U.S. in the past two decades; 1 in 10 children now has that diagnosis.
The updated guidelines from the AAP recommend that children with ADHD should also be screened for other conditions, and monitored closely. But the treatment recommendations regarding medication are essentially unchanged from the previous guidelines, which were published in 2011.
Anyone age 6 and older should start taking medication and get behavioral therapy as soon as they are diagnosed, the AAP says. Children 5 and under should start with behavioral treatment before taking any medications.
Still, many researchers and clinicians who study or specialize in treating kids with ADHD worry that the role of medication in treatment is too large.
“I think it’s a huge disservice to not just the children that we’re trying to treat, but also to the parent who would prefer to have behavioral interventions,” says Erika Coles, a psychologist at Florida International University who studies the effectiveness of such treatments.
Behavioral intervention can range from cognitive therapy to in-school supports, which might include special training for teachers or making accommodations for children in the classroom. Changes at home can help, too, including something as simple as helping parents set up a system of expectations that they reinforce with rewards or mild punishments.
These interventions are designed to teach children strategies they can use on a daily basis to stay focused and to reinforce social skills that may fail to develop in children who struggle to concentrate.
After school, Ashley uses behavioral techniques to keep Brody on track with his chores; for example, when Brody swears in frustration at one point, his mother has him give up one of his marbles.
Ashley says this is supposed to help him internalize the discipline and “grit” needed to complete difficult tasks, but it can feel to her like micromanaging.
“I don’t like the idea that I have to tell my kids or anybody what to do,” Ashley says. “I want them to be able to think for themselves and make those safe choices. But at this point, that’s just not possible yet for Brody.”
Still, she says, the coaching she is giving him for his behavior is helping.
While the AAP guidelines advise a combination of meds and behavioral treatment, the research backing this combination is problematic, according to Coles, because the two approaches weren’t evaluated separately.
“If you look at studies that did the combined treatment of both medication and behavioral interventions, you can’t disentangle what leads to the best outcome,” Coles says.
A 2016 study published in the Journal of Clinical Child & Adolescent Psychology explored the sequencing of treatment methods and showed that kids between the ages of 5 and 12 with ADHD who were given behavioral treatment before starting pills had fewer behavioral problems than kids who started with pills right away.
A new study co-authored by Coles took it even further. It found that children between the ages of 5 and 13 with ADHD who got therapy first, before being put on medication, often needed less of the medicine later on.
And 37% of the children who got therapy first didn’t end up needing to take pills at all.
“Really, what it’s suggesting is that if we use behavioral intervention as the first line of treatment, we can reduce or eliminate the need for medication in children with ADHD,” Coles says.
Fewer meds also means fewer side effects. Some kids have trouble sleeping, lose their appetite or even experience personality changes while on medication, and there’s not much research or scientific evidence on what it means to stay on these drugs for years, especially for someone who is still growing.
Meanwhile, the studies backing “therapy first” are promising and compelling, but they are small. Coles’ research looked at 127 children, while the 2016 study by researchers from a number of different institutions across the U.S. evaluated 146.
A spokesperson for the American Academy of Pediatrics’ ADHD Clinical Practice Guidelines Subcommittee says the group reviewed the recent “behavior first” research but didn’t find the evidence strong enough to warrant a change in the guidelines.
However, both the academy and its critics agree that not enough children are currently getting adequate behavioral treatment.
“It’s certainly true that when you watch TV, you’re not going to see a lot of commercials about behavioral treatments, but you very well may see some new ones about medication,” says Carla Allan, a psychologist and ADHD specialist at Children’s Mercy in Kansas City, Mo., and a member of the ADHD Clinical Practice Guidelines Subcommittee at the AAP.
Allan is Brody Knapp’s therapist, and she had a role in drafting the latest guidelines. While she wants to see more ADHD patients receive behavioral treatment, she concurs with the AAP’s decision to hold steady on the current recommendations about medication.
In a 2018 study published in the Journal of Pediatrics, only about 60% of kids diagnosed with ADHD in the U.S. have ever had any behavioral interventions other than in school, while 90% have received medication.
Many mental health advocates, including representatives of the National Alliance on Mental Illness, say there are not enough trained therapists to meet the need. Plus the interventions can be time-consuming for families, and many families can’t afford it.
Initially, Brody’s family avoided medication and relied only on behavioral therapy to treat his ADHD. But after four months of that approach, Brody had a violent tantrum at home, so, in consultation with his pediatrician, his parents decided to add medication to his treatment as well. He now takes daily doses of the ADHD drug Concerta.
Brett Knapp says he is OK with that now. He says that starting with behavioral therapy, before turning to meds, gave him insight.
“It’s not necessarily for the child,” Brett says of the parental training he received as part of the therapy. “It really is for the parent — to realize what an ADHD kid looks like. And for the perspective, I think it helped out greatly to, kind of, realize how I need to interact and how I need to talk and how I need to work with my child.”
This story comes from NPR’s reporting partnership with KCUR and Kaiser Health News.