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 is 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 is 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 in to 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 5 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 and evening dose when he got in to middle school and the academic challenges increased- had 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.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.
Early Childhood Adversity (abuse, neglect, etc.) is a huge component largely overlooked but starting to get more attention.
For me, the bigger question is replacing “ADHD” with any of the DSM labels.
So, “How Should We Understand the Link Between “Schizophrenia” and Early Death?” “Bi-polar” “Depression” etc.
And when will we see more and more studies showing the correlation between early use (5-6 years of age) of psychotropic drugs and premature death?
Thanks for the piece Dr.
I agree. John Read’s research implies adverse childhood experiences or child abuse is the most likely cause of “schizophrenia,” too.
And trauma or abuse are not brain diseases, so should not be medicated. Yet Dr. Read’s other research shows that 77% of child abuse victims presented to hospitals are diagnosed as “psychotic,” but only 10% of non abused children are so diagnosed. And these “psychosis” claims are based on no actual medical tests, but do result in a neuroleptic prescription.
And the antipsychotics / neuroleptic drugs are known to cause both the negative and positive symptoms of “schizophrenia,” via neuroleptic induced deficit syndrome:
“Neuroleptic induced deficit syndrome is principally characterized by the same symptoms that constitute the negative symptoms of schizophrenia—emotional blunting, apathy, hypobulia, difficulty in thinking, difficulty or total inability in concentrating, attention deficits, and desocialization. This can easily lead to misdiagnosis and mistreatment. Instead of decreasing the antipsychotic, the doctor may increase their dose to try to “improve” what he perceives to be negative symptoms of schizophrenia, rather than antipsychotic side effects.”
And the central symptoms of neuroleptic induced anticholinergic intoxication syndrome:
“neuroleptics … may result in … the anticholinergic intoxication syndrome … Central symptoms may include memory loss, disorientation, incoherence, hallucinations, psychosis, delirium, hyperactivity, twitching or jerking movements, stereotypy, and seizures.”
Thank you for speaking out about the problem of psychiatric drugging of children suffering from adverse childhood experiences, Dr. Gold. Putting children on amphetamines or speed is not appropriate behavior. Neither is putting children on the antipsychotics.
I think you are right that the real link is between a higher dose of adverse childhood experiences and early death. The adhd phantom gets slapped on a lot of people who have more of these real risk factors than the general population. Since Adhd is a fictitious pseudo-organization to begin with, it has nothing to do with causing early death.
Great article. There seems to be a thread of justification for drug use and or excuses for drug use in this story. I have to wonder how Max’s story would have turned out had he never been put on ADHD medication. We diminish his life if we don’t advocate for no drugs for the vary reasons ACE may contribute or exacerbate this environment.
What can we expect from this fast-food style of mental health?
This study is very typical, actually. “Mentally ill” people are studied, people who are drugged for many years, and when there are adverse consequences, these consequences are blamed on their “illness.”
It is a very simple, and essentially murderous, situation. We have to figure out how to get the public to see this.
If Max had been born into a family of male children, instead of having sisters, the scenario would be different. Boys are generally are late bloomers and are not obedient little followers. I had high achievement expectations, too, for my sons. They were all low achievers. I always heard that boys don’t “get it” academically, until they are about age sixteen. I wonder if Max’s mother was from an all girl family. Max would have seemed like he was from another planet. This is a real tragedy.
This post is also applicable beyond ADHD and early deaths. The stats for other major “mental” disorders all point to early death, and I think early deaths have more to say about how parents and siblings fail to handle their relative’s problems. I often go on about parents putting too much trust in the medical model to “sort things out” for their relative. When the problems don’t get sorted, then the family tries to farm out the problem to the social welfare system. When the problem is not sorted out there, then the person is often on the streets or dead from the effects of too much wrong intervention. Nobody has told the family that problems can be sorted out within the structure and dynamics of the family. I am grateful that there is now help available to families online, such as Krista McKinnon’s course associated with The Family Outreach & Response Program. http://familymentalhealthrecovery.org/families-healing-together-online-recovery-education
Great comment Rossa!
Never mind that ADHD drugs are Class II Controlled Substances that happen to be amphetamines. When recreational drug user’s die of early deaths nobody even questions it: of course it was the drugs. But call those same drugs (those SAME EXACT drugs!) “medications” and then all the sudden… at the very least, it’s this bigger picture, “whole story”, everything plays a role, underlying problems unaddressed, complicated dilemma sort of thing.