Alarming headlines, based on a recent study, declare that diagnosis with ADHD doubles the risk of early death. Psychiatrist Stephen Faraone, commenting on the original study published in the Lancet, concludes that: “for clinicians early diagnosis and treatment should become the rule rather than the exception.” This conclusion represents a false assumption that the deaths occurred in cases that were not treated.
The large cohort study in Denmark, that looked at records of 2 million individuals, identified over 32,000 who had been diagnosed with ADHD and then calculated the “all cause mortality rate.” There is no data available about whether or not they were treated. As ADHD is commonly treated with stimulant medication, it is unlikely that all of these cases were untreated. It is more likely that many, if not most, were treated with medication. If that were the case, the conclusion could be the exact opposite: Namely, that diagnosis and treatment with stimulant medication are associated with increased risk of early death. In that case, careful re-assessment of the way we conceptualize and treat problems of attention would be in order.
If diagnosis and treatment with stimulants are associated with increased risk of early death, how would we make sense of this finding? The following story offers an example.
Max, whose life was cut short at 17, alone behind the wheel of his car with a blood alcohol level of well over .08, had been treated for many years for ADHD. I met his mother, Sally, when she was taking a long hard look at her son’s history and trying to make sense of his descent into substance abuse with this tragic demise.
Max was the youngest of three. Where his two older sisters excelled in school, he was “flighty.” Even as young as three, the rest of the family would get frustrated with him when he got easily distracted when asked to do a simple task like put on his shoes. In a busy household, there was a lot of negative attention directed at Max.
But in this time of careful and at times agonizing reflection, Sally acknowledged that Max had been very curious and creative as well. He “noticed everything.” At age five he was uncharacteristically quiet and attentive at a classical music concert, surprising his parents by identifying the individual instruments. But in a family of high academic achievers, when in first grade he lagged behind in learning to read, they took him to the pediatrician, who diagnosed inattentive ADHD and put him on stimulant medication.
Her doctors had seen it as a straightforward problem, no different from food allergies or diabetes. Max “had “ ADHD, so they gave him medication to treat it. The medication did have a remarkable effect on his ability to focus, from the first dose. But as the demands of school increased, the visits to the doctor consisted of changing dosages and formulations.
Sally’s heart ached as she recalled visits to the pediatrician where she spoke openly in front of Max about him as “unmotivated” or even “lazy.” Sally wondered if the exclusive focus on Max’s dose of medication and his ability to get his homework done; they had added an evening dose when he got into middle school and the academic challenges increased — and distracted them from seeing Max’s true nature. In a soft voice that belied cries of agony, she wondered if the firm, demanding parenting style that had been so effective with their first two, was perhaps not ideal for Max.
Once she felt comfortable telling me her story, other relevant information emerged. When Max, an unplanned third child, was young, Sally had struggled with postpartum depression. During those early years, she had not been able to give this active, sensitive toddler the attention he needed. In contrast, the two older girls had been a source of help and support. Her time and attention gravitated naturally to them. When Max was evaluated for ADHD by her pediatrician, this part of the story, a difficult chapter they all wished to forget, never came up. Now Sally wondered if Max’s “problem behavior” had been at least in part, an effort to connect, to get his mother’s attention. She had heard people speak of ADHD as a deficit, not of the child’s ability to pay attention, but of the parents’ attention to their child.
She had been doing her best for Max. But perhaps she, the rest of the family, as well as the doctors who had treated Max, hadn’t really been listening to Max. The focus of visits to the doctor became almost exclusively on the dose of medication and his academic performance.
As his older sisters continued to thrive, Max attempted to distinguish himself through sports, an effort that was sadly derailed when in 11th grade he suffered a significant knee injury. His grades plummeted. Still the focus was on finding the correct regimen of ADHD medication.
Reluctantly Sally shared with me a longstanding family history of substance abuse. She suspected that this knee injury was “the beginning of the end.” Max began drinking, though, in keeping with the family tradition, he was able to keep this fact well hidden from his parents.
While medication may have a role to play, when individuals are diagnosed with ADHD and treated with medication in a system of care that does not offer space and time to listen to the story, to discover meaning in behavior, underlying problems are not addressed.
Perhaps the true association between diagnosis with ADHD and early death can be found in another large study, a long-term collaborative study sponsored by the Center for Disease Control, the Adverse Childhood Experiences or ACES study. This study offers extensive evidence of a high correlation between adverse childhood experiences (ACES) and a range of negative long-term health outcomes, including early death. ACES include not only abuse and neglect but also the more ubiquitous problems of parental mental illness, substance abuse and divorce.
What we call ADHD is a collection of symptoms of that represents problems of regulation of attention, behavior, and emotion. A biological vulnerability may be part of that story. But it is usually not the whole story.
The appropriate conclusion from this study, seen in light of Max’s story and the ACES study, should be that starting from an early age, space and time to tell the story is essential. The risk lies in diagnosing and medicating without understanding the whole story. In a safe, non-judgmental environment, when families have an opportunity be heard, to appreciate the often-complex meaning in a child’s behavior, as Sally was sadly doing after Max’s death, the path to healing becomes clear.